June 3, 2012
Jalane told me to call on Thursday to get the results of Lucy’s last bone marrow aspiration. So, when the caller id indicated the hospital number on WEDNESDAY evening, my heart stopped. Since Bruce was out of town, I was hustling to get the kids ready for a babysitter in an attempt to attend the 5th grade graduation at my school. When I saw that number, a hot panic came over me that quickly brought to life all of the thoughts that I had somehow managed to dismiss for a few minutes. I found my breath and answered, “Hello. Is everything ok?” Great news! The answer was YES! Everything from Lucy’s last tests came back clear, cancer-free. Her results are good and she is just required to complete this last round. It is official. After June 11th (her last day of this final round) she will not only be cancer free, but chemo-free too! Two days later, on June 13th, Lucy will have surgery to have her port removed. What an exciting time! Words cannot express how blessed and grateful we feel to have survived this obstacle with the support of our friends and family.
Sometime after Lucy’s surgery, our family is planning on hosting a “thank you” party. There is no way we could have pulled through this journey without our friends and family. We have so much to celebrate! We will keep you posted about the party details once we get it all organized.
May 26, 2012
Although many days have passed since I last updated, hardly an hour has gone by where Bruce and I did not count our blessings for our friends and family. The images of the gathering at IW Marks and the Lucy Walk in Katy are forever engraved in our minds and have carried us through many days and nights. That support and many answered prayers have taken us a long way. Lucy has trucked through the past months of treatment with no major hiccups. She experienced a few medicine changes and fever scares, but all in all she has tolerated her daily chemo pills, biweekly clinic visits, and treatments. She has been able to enjoy each day. We are blessed!
Today Lucy had her LAST official treatment at the Texas Children’s. She had her regularly scheduled spinal tap and a final bone marrow aspiration (yes, that said FINAL!) as well. That would allow her to get the spinal tap under a heavier anesthetic at the same time. The bone marrow aspiration is a procedure where the doctors collect (through her hip) and examine Lucy’s bone marrow to assure that it is now completely healthy and cancer free. After that is determined, Lucy will complete her treatment at home via the continuation of chemo pills until June 11. She will then continue to go into the hospital for monthly blood counts and physical exams only. She will have to take some of the maintenance drugs for about a year, until her immune system can handle things and her body recovers. The doctor told me to call back next Thursday to get the results from the bone marrow and to talk about setting a date to have her port removed. Without the port we won’t have to worry about fevers or infections anymore. That will be great!
Lucy was amazing today! She is so comfortable there and just makes it all looks easy. I, of course, felt my typical yucky, sleepless-night-before treatment anxiety, but took great comfort in knowing that this is HER LAST ONE, the very last time that I have to watch her go through all of this wishing every second that I could take it all away and make it all stop. She made it though! They ARE going to stop and she IS going to be ok. Bruce and I are so proud of her. We are so happy to be the parents of such a tough little girl and oh so grateful for her strength.
Some other news:
We welcomed our new little addition, Regis Townes Schuler, to our family on February 28th. He is a true bundle of joy and none of us can get enough of him. However, if I tried to measure, his biggest fan might be Julia. I can’t keep her away.
Preston Winslow (4 years old), who was diagnosed briefly before Lucy, lost his battle with cancer and earned his angel wings this week. He will be missed, but NEVER EVER forgotten! God bless you little man and your awesome family!
September 20, 2011
It is hard to believe that another summer is over. I looked so forward to spending ALL this time with the kids and catching up on some home projects; but as I prepared to go back to school, I was not sure where ALL that time went. It certainly was not on home projects! We did have a lot of fun and made some great memories together. However, once again, the time just passed way too fast.
For the most part, Lucy has stuck to her normal maintenance routine. Her blood counts (namely ANC) have remained in the range expected. One of her medicines was increased slightly, but otherwise, she remains on about fifty percent of the doses initially prescribed. Although some weeks her blood counts appear high, they drop right back down on the next visit. Her current dose remains to be about all her body can take. I continue to pray that it will be just enough to keep this nasty cancer away for good. Speaking of away for good… she is projected to complete her treatments next summer. I can’t believe that she is just months away from being cancer AND chemo free. It will be new world for us for sure. From there, she will continue to be a clinic patient for five years beyond her last treatment, but her visits will be more like a typical doctor’s check-up. She will have monthly blood screens and check-ups that will gradually space out after a few years. Sounds great to me!
She had a spinal tap and treatment on Friday. Once again, she handled it like a pro. She was a little upset when she was coming out of her anesthetic, but doesn’t recall any of it. She even mentioned on the way out that it was a good thing that she did not cry like the other children around her that day. I just smiled; agreed and told her what a good job she did…Miracle Drugs!
Lucy just dances through life happily. Although I have no idea what she feels like internally, I honestly think that she doesn’t know what she is supposed to feel like. She doesn’t know what it would feel like to be completely healthy and chemo-free, so she just keeps going with a smile.
She had an incredible summer and really didn’t miss a beat. She had a ball at Disney World! She caught the flu a few days after we were there and ended up spending part of one day in the hospital. Fortunately, her blood counts appeared high enough then that with a little help from Theraflu; she was released to fight it off on her own. She really only missed one day in the park and was up and ready to go again the next day. We all had such an awesome time! It truly was an unforgettable trip for our whole family!
She spent a couple weekends at the Frio River, visited Galveston a few times, participated in the Houston Zoo day camp, got to visit GG and Papa in Tulsa, played a little tennis, went to the park, library story times and swam a bunch. It was so wonderful to see her partake in all of these things… so different then last summer. I feel like I can make plans for her without wondering if she will actually be healthy enough to attend. I feel so blessed!
Well, school has started now and she has put her best foot forward in pre-kindergarten. She and Ross (in Kindergarten) are going to a dual language program at the school where I teach. I am really enjoying having them there. Being a teacher myself, I have seldom been able to volunteer in any of my own children’s classrooms. Having them at the same school as me, I feel like I am able to have some insight and I can participate more in their learning.
She and Ross have had a great start. Ross is excited to have a little bit of homework and eagerly completes it in my classroom after school (for now anyway). Lucy makes her own. She diligently practices writing all of her letters and numbers and loves to copy my student’s names and any other words that she sees in my room. She is really into behavior charts too and even keeps a running tally on Julia’s progress. Julia has earned her way to Lucy’s “prize box” a few times, but I am sorry to report that she has earned a few sad faces too: knocking over bubba’s fort, eating the top to the black marker, being way too rough with the hermit crabs, putting noodles and chocolate cookies in her nose, and running away with Lucy’s prized billfold to name a few… She does keep us on our toes, but she also earns a lots of smiley faces on Lucy’s chart just for making us laugh. In fact, I think that was our inspiration to expand our family once more. Just before school started, we learned that a new addition would be joining our family around the first week of March. We are not sure how this new little person will change the dynamics of things, but nonetheless, we are excited!
Please keep our friend Mya in your prayers. She is at St. Jude now and is scheduled for her second bone marrow transplant on October 1st.
Thanks for being there for us, thinking about Lucy, and becoming more aware of pediatric cancer.
June 20, 2011
Lucy and the rest of us are having a great start to our summer. Outside of her scheduled treatment visits, Lucy has avoided the hospital. Her port surgery was a success and she handled the whole experience like a pro. She received treatment the following day without any problems. She was de accessed and left to heal after that. Her blood counts have been in the “normal range” (for a kid on chemo anyway). Just to be safe though, Nana kept Lucy at her house for that last week of school. Lucy absolutely LOVES any time with Nana and had fun spending a bit with her cousins, Austin, Lily and baby Katalina, who live across the street. I worried a lot less about her getting sick again from being exposed to so many people at school.
Despite her more average looking blood counts, Lucy is still prescribed only 50% of the typical amount of daily chemo. Her weekly Friday dose and spinal tap amounts remained the same as the Methotrexate is not dependant on her blood counts. I am expecting the doctors to gradually start to increase her dose soon since she has been smooth sailing for the past few weeks.
We’ve stayed busy over the first few weeks of summer. On June 7, Lucy was invited by Dr. Thompson to help shave the heads of some of the Houston Dynamo soccer players for a “Bald is Beautiful” event. Our family met Dr. Thompson, other cancer warrior friends, and some hairy soccer players at their stadium. Lucy hit it off well with Tally Hall (the team’s awesome goalie) and boy, did he have a lot of useless hair! Lucy and Ross helped to make him much more aerodynamic. It was so fun to watch! Here are a few pictures that were posted on their website: http://www.houstondynamo.com/june-7-head-shaving and blog: http://insider.houstondynamo.com/blog/bobby-boswell/post/57/Best-Prize-Ever-Meet-Me-Bobby-Boswell . There is no doubt that these are some incredibly bighearted men!
We enjoyed a warm weekend at the Frio River with friends, the Moore Family. Ross had tons of fun catching things (frogs, bugs, crawfish… whatever moved) while Lucy and Julia enjoyed splashing around in the little bit of cool river water. Man, do we need the rain! This past week, Lucy was able to attend day camp at the Houston Zoo with Ross. They both learned a lot and enjoyed being together. They know lots of animal facts now… I am not sure they are always accurate though. Lucy told me that a shark’s tooth could grow as big as an adult thumb, Ross then followed with “yea… actually, they could grow the size of your head Mom!” Humm, now who do you think was listening? They both brought cameras along too. Their pictures, taken from a child’s perspective, are great. Lucy took tons of all of the interpretative signs, monkeys and birds and Ross’ were close ups of funny faces (kids and teachers) or reptiles. While they were there, I got to spend a few hours alone with Julia (swimming, hanging out at the zoo or park, or grocery shopping) and that was nice too. She has a wonderful sense of humor and does such silly things. She really makes me smile (and a little bit crazy too!)
On Saturday, we have planned a big family trip to Disney World. My parents arranged the vacation through their timeshare exchange points a very long time ago. My parents, sister’s family, and family friend, Rory, are all going. Unfortunately, my brother Tommy and his family are not able to make it on account of their new daughter. We will really miss them. Our kids are so excited! We’ve watched videos of the park and made scrapbooks for the characters to sign. We even have plans to have breakfast with the Cinderella! I think that flying on an airplane is going to be a pretty big thrill too… I am just praying that Julia behaves herself! Lucy has treatment and a spinal tap (initiating her next round) scheduled for Wednesday this week. She will start steroids that same day. The medicine typically causes her to be more dramatic and much more sensitive to stimulation. I am a little concerned about dealing with these side effects while at Disney World… but, I guess we just have to roll with the punches. I am praying that she will feel good enough to enjoy some of it. She just has to keep on trucking forward. The Lord is our Shepherd!
May 23, 2011
I am sorry that it has been so long since I posted. Lucy is doing well and for the most part, she has stayed healthy since she was last discharged... busy too. She did have a chance to perform in her spring show at school- adorable! She also had an absolute blast at her 4th birthday party and was so happy to spend the afternoon with her friends. Since her birthday was on Easter, we organized a “fairy party” at the park the week after that. Luckily, she was discharged right on time for it. All of the girls had wings and flower headpieces. They looked so cute! The Snow dog Ice-cream truck did a drive-by too. Lucy and her friends took over the truck for a while, bells and all! It was an awesome and unforgettable day! She was completely exhausted that afternoon, but slept with sweet dreams in her own bed. That Sunday we celebrated a late Easter at Nana and Papa’s house. It was a fun-filled weekend for sure.
Thanks to the Sunshine Kids, we spent the Mother’s Day weekend at the Schlitterbahn in New Braunfels. We had such a wonderful time together and thoroughly enjoyed the break from the day to day stresses. The kids loved all the water activities and the rides and Bruce and I loved the get-away with them. Lucy and Ross also finished up their t-ball season with the Rivercats, the team that they played on together. This was Lucy’s first year to play. She picked the game up pretty quick and was even awarded the game ball once for her first RBI. GG Emma, a ball player herself, was her biggest fan and Lucy was always so proud to play for her. It was fun to watch!
Lucy is now receiving 50% of her chemo. The doctors are allowing her to slowly climb her way back up to her prescribed dosages. They are also working to find out why her blood counts have taken some recent dives. Studies are being conducted to find out how her body metabolizes various forms of chemo. For now, she is scheduled to have her port put back in this morning. It is an out-patient surgery. The doctors plan on leaving her accessed through the night so that she will be able to get treatment on Wednesday. Thursday she goes back for a preventive medicine.
Earlier this week, Lucy did not seem to feel well. I suspected that her counts were dipping, so Bruce and I were not totally shocked to find that she sprung a fever on Saturday evening. We quickly made our way to the ER. I dreaded having to face this visit without a port. Her veins are so weak now and it always takes a few sticks to get a good line in. Additionally, I felt like she had already paid her dues and did not deserve any more nights there. I also feared that she would not make the cuts to have her surgery scheduled for Tuesday AND I was scared, wondering why this keeps happening. She was treated with some IV antibiotics and much to my relief, sent home (at 1:30am). Her counts looked good enough to handle whatever it was she had. Yesterday she was fever free and after a quick clinic visit we found out that her ANC counts met the bar. Dr. Kamdar said that we could proceed. So with a new port in place after today and half way to her goal treatment dosage, we are hoping to keep the progress going to kick cancer’s booty! We have a few warrior friends that need some very special prayers- Preston (who is anticipating his bone marrow in the upcoming days) and Mya (who just found out that her fight is not finished… for the 4th time). These are some incredible kids and families! We appreciate your support more then I can explain.
April 28, 2011
Home again, home again jiggity jig! Lucy’s final days of treatment and antibiotics went smoothly and she was finally discharged around 6pm tonight. She could hardly contain herself in her car seat while we waited the near 20 minutes outside the pharmacy drive through on the way home from the hospital. It feels so good to be together again. I could not stop smiling and neither could she. We got home just in time for a nice bath and her bedtime. No blood pressure checks or medicines to take through the night, no tubes coming out of her arms or legs, no pole to lug around, no early morning sticks. It feels so good to be together again! It seems that kids will be kids no matter where they are. The halls were often filled with tears, but laughter and giggles were common sounds too. Lucy certainly made herself at home and the kids and parents there really helped to lift each other up. Although by the time we left, Lucy would roam the halls of the 9th floor independently, looking for friends to play with, her favorite nurses, to see if the play room was open or who might be in the family room; she still really missed her brother and sister and her own cozy bed. It is great to be home!
April 24, 2011
Happy Easter! Lucy and all of our family had a wonderful weekend celebrating Easter and her birthday together. Yesterday, Aunt Diane, Uncle Mark, Sam and Kelly came up and played. Then Ross stayed to have a sleepover with Daddy and Lucy at the hospital. We were not really sure if the bunny would find all of us this morning. He came through though! I think that he was waiting for us to get together; because shortly after I brought Julia up there this morning, the bunny dropped off their baskets and Lucy’s hospital room was littered with eggs! We were all so excited and had a great time collecting them all and playing with the little Easter toys in the baskets. My heart sang when Lucy said it was “the best day ever”. At lunchtime we celebrated Lucy’s birthday with Nana, Aunt Niki and Cousins Nick, Ben and Danielle. We all had cake together in the Ronald McDonald family room. Kevin Kline and his wife (a.k.a The Easter Bunny), the founders of the Snowdrop Foundation and recipient of the “pay it forward” donation made by Kilpatrick Elementary, came up with some other volunteers that afternoon. They hid tons of eggs around the 9th floor and gave all of the kids an Easter basket, hat and picture with the bunny. Ross, Lucy and Crazy Julia got in on this floor wide hunt. They were all running around like mad. It was awesome to see almost ALL of the kids out hunting eggs. I was so moved by these generous people and the volunteer working tirelessly to keep the McDonald room stocked and clean. They gave up Easters with their own families to come and make ours special. Never am I reminded more of GOD’S sacrifices then when I see the efforts of these people out of altruism. It truly amazes me and really fills my heart with happiness. We are so grateful!
Lucy’s surgery went well yesterday. She was on the add-on list for the surgery schedule and had orders not to eat or drink anything after midnight the night prior. She did not end up being called for surgery until around 6:30pm. We occupied time without food or drink by visiting the beauty salon on the 16th floor (you should have seen her hair!), reading, playing with other kids on our floor and taking a long nap. She tolerated the extended wait far better than I would have! When it was time for surgery, the anesthesiologist asked if she would need a little something to help her separate from me. She was a little tired from the lack of food, but I figured that she would do fine. When the doctor returned to take her to the operating room, she grabbed her blankie and jumped on her IV pole for a ride beyond the double doors. She looked back, smiled and waved goodbye to me before entering. She was excited about the strawberry banana flavoring of the anesthetic mask. Why is that so much more difficult on me?! After the surgery, she was a little nauseous and concerned that her saloon hairdo might be messed up, but otherwise she was fine. The doctor removed her portacath and put in three new IV lines to continue antibiotic administration. Lucy’s veins have been weakened from the chemo and finding an IV sight is often difficult, so having three lines will allow for some flexibility if one live decides not to work this week.
On Wednesday, another new (“fresh”) line will be put in so she can get vincristine (chemo). I am really praying that this administration goes smoothly without her port in. Her ANC (immunity) has improved over the last few days and the nurses have been “unhooking” her from her pole in between infusions. Thursday, when she completes her prescribed antibiotics, she should be able to go home and enjoy her birthday party scheduled for Saturday. She has talked about this fairy party for MONTHS and is so looking forward to celebrating with her girl classmates and friends. It will be a great day for sure. Her school spring show, which she missed out on last year, is also scheduled for Friday. I know that she would LOVE to participate in it. She rehearses her class songs quite a bit. I am not saying much or reminding her about this, but will get a doctor’s opinion on participation for sure. I would love to see her there!
In the upcoming weeks, Lucy will get another port put in and then brush herself off and get back on the chemo train again. Let’s get this ride over with!
April 21, 2011
Lucy did avoid the mouth sores. She started back to school and proceeded to take half of the originally prescribed chemotherapy at home. Additionally, she was taken off of bactrim (a maintenance antibiotic that she took several days each week) and put on pentamidine (a medicine that has to be inhaled in clinic once a month) in hopes that this would help improve her counts. No luck yet. My mom and dad took her to clinic last Friday for counts and found out that she was neutropenic (low ANC) again. She was once again put on a chemo hold. She appeared to be feeling fine and Bruce and I decided to allow her to enjoy the neighborhood Easter egg hunt on Saturday morning. Ross, Julia and Lucy had so much fun! As Lucy filled her basket, she would drop eggs in other kid’s baskets too. On the way there, I reminded her that she participated in this egg hunt last year, but was not feeling well. She told us that her legs hurt and that she could not run very fast. I told her that this year her leukemia is gone and reminded her that she has her “fast back”. She certainly took advantage. It was a fun day!
Sunday we were laying low and just hung out with her around the house. When Ross got home from Sunday school we all walked down to the bayou to pick berries. She loves this. When we got home, Lucy plopped down on the couch looking exhausted. She came to the table for lunch, but said she did not want to eat. Bruce took her temperature and discovered the 102 fever. We were off to the ER.I called them when we were on our way there to give them a heads up. Fortunately this seemed to help and she was seen immediately. After a nurse took her vitals she was whisked to an urgent care room where they started her on major fluids and heavy antibiotics. Doctors were concerned that her heart rate was faster then what her fever would account for. Because it took her an excessive amount of time to stabilize, the doctor sent her to the ICU. While we were there, her infection was confirmed as bacterial. By Monday afternoon, she appeared to be feeling much better and was transported to the oncology floor. By then, the type of bacteria (bacillus) was discovered. We were told that it was a weak bacteria, but a “sticky one”; meaning it likes to stick to plastic ports. After discussing and ruling out any other options, Dr. Kamdar told us that her port has to come out.
Lucy has surgery scheduled tomorrow to have her port removed. She will continue to receive IV antibiotics for 5 to 9 more days. We may be able to arrange to do the antibiotics at home during some of these days. The infectious disease team and the oncology team are going to meet tomorrow to come up with a plan for this. She WAS also scheduled to have IV chemo treatment (including a week of steroids) tomorrow. Her treatment will likely be pushed back to next Friday. Unfortunately, she will probably not have a new port in yet. As I was discussing this with Dr. Kamdar, I was recalling all of the burn and collapsed vein issues that Lucy had with the vincristine (chemo drug) before she had her port. I do not want her to have to battle this again, even for one more time! It looks like the Easter bunny is going to have to find Lucy at the hospital again this year. Her birthday falls on Sunday too, so we will have to celebrate big here. I am disappointed that things did not work out like I intended (Eater plans, birthday plans, TAKS testing at school next week…). However, I know and am reminded especially during this Easter season, that it is not MY intentions that matter; it is HIS. I trust God to get us through this rocky patch and continue to hold Lucy's hands tightly now, tomorrow and always. Thanks for keeping us in your prayers. Happy Easter!
March 28, 2011
Lucy and all of our family had a wonderful spring break together. We stayed in Houston and enjoyed some time visiting with some friends and family.
Lucy is doing fine, but seems to be having a few hiccups. After returning to school for the week after spring break, Lucy and I took Friday off for her treatment, a spinal tap and chemo via her port. Aunt Niki met us there for a little added bonus AND we got to see our friend Addison (who, LET ME ADD, was receiving her last consolidation treatment and will officially enter maintenance with Lucy!)
When her labs were drawn prior to her treatment, I was shocked to learn that her ANC counts were at rock bottom again. The NP suspected one of the meds that she is on. Anyway, no chemo, maintenance drugs (other than what they gave her on Friday) or public for this week. She will continue on steroids through Wednesday. The NP called after we got home Friday evening and said that her liver levels appeared elevated too and she wanted to get a little more blood from her (for testing) when she returns on Friday. If her ANC levels are back to where they should be, the NP said that they will most likely start her back on 1/2 the doses for a while. I think her little body is telling us that she needs a break, but I am not sure what the elevated liver levels signify in the medical realm.
She appears to be feeling ok with only a few minor complaints. We went for a walk along the bayou on Sunday and she kept saying how happy she was to be there with all of the flowers and Julia kept yelling "fower!" The bluebonnets are in full bloom!
My sister, Niki, kept her today and my mom is going to help out with her for the rest of the week. Thank God for Mom and Niki!! Lucy is having the time of her life getting Niki and then Nana all to herself!
Sunday she was complaining that her mouth was hurting and I am PRAYING that she does not develop mouth sores this week (one of the symptoms of the methotrexate). So far, so good. Hopefully, she'll be back on the chemo train next week.
I hope your week is a great one and that you can take some time to notice God's spring beauty.
March 17, 2011
After school on Friday, I took Lucy to the clinic to get her blood counts checked. I guess that the regular speedy oncology lab was closed for the day and they had to send her blood to be counted at the general hospital lab. It is a pretty fast procedure normally. The clinic has this transport system set up in the wall. Really, it works just like the vacuum tubes at a drive-in bank. So normally the nurses draw blood, send it down the chute and hand us a print out of results about 20 minutes later. Impressive considering various blood cells are actually being examined and counted. I have an image of a bunch of Umpa Lumpas in the hospital basement slaving away. J Well, about four hours later we found out that she is back in the treatment game. Her ANC counts are still low, but they are where they should be as long as she is receiving chemo and it is doing its job. I had brought her medicine with me, so we wasted no time. It was kind of nice not having to keep track of any medicine for a few days, but I am always a little concerned about diverting from the protocol too much… I want to make sure we get rid of leukemia for good! Lucy’s isolation restrictions have also been lifted, so we have been able to really enjoy our spring break together- visiting cousins, going to the rodeo, and just enjoying time together without the pressures of having to be somewhere. I took the kids fishing yesterday evening and they caught no fish, but a little red eared turtle. They named him “Turty”. J We decided to let him “vacation” at our house over the break. I am sure that Turty’s mom is anxiously waiting for his return… if we can keep Julia from eating him! Kenzie Stanfield, a writer for Katy Magazine, e-mailed me a few weeks ago regarding an article about how we have benefited from the Lucy Walk that Niki and Tommy organized. I was excited about an opportunity to thank everyone who supported us in that effort. She met us at the park for an interview and here are the results published in the spring issue of Katy Magazine: http://www.katymagazine.com/articles/2011/spring/Katy-Texas-Lucy-Schuler-Katy-TX.pdf
I hope the start of spring has been a good one for you. Thanks again for being a friend!
March 7, 2011
Yea! Lucy was discharged this afternoon. When the nurse told her that she could leave her room because her isolation precautions had been lifted, she jumped out of bed with a huge smile on her face. No growth was found on her cultures, but her blood counts are still really low. She is not to go to school or any other public place until we get counts again on Friday. Her spring break is starting a little early. Additionally, she is not taking ANY medicine until Friday. I can’t believe it. She has not had a break from chemo and other meds in months. Although I did not like her being sick, I am glad that her little body will have some drug-free recovery time. Friday she will get her counts and if she meets the mark, she will start daily oral chemotherapies again. Two weeks after that she is scheduled for her next spinal tap. Hard to believe that she has made it through a year of this!
She was glad to get home today and is looking forward to giving Bubba all the little things she got for him along the way. Anytime she would get a sticker or had an opportunity to choose a snack off the snack cart when it wheeled by, she ALWAYS asked if she could get something for Ross too. It is like she has been away on a long trip. When they reunite, she tells him all the details of her time away and gives him all the goodies she collected. It is fun to watch. They truly are the best of friends… ok, when they are not the worst of friends. J I can’t wait to be together again. It was a long weekend.
March 6, 2011
Hi there! I have lesson plans to pull together for tomorrow and it is late, so I am going to try to make this a quick one.
Thursday night Lucy and Ross had a chance to go to the Houston Livestock Show and Rodeo and participate in a Little Rustler’s event via the Leukemia and Lymphoma Society. They were so excited about this and had been counting down the days until it was finally Thursday. I picked the kids up from school to head there. On the drive, Lucy complained of her ear hurting. As the night progressed, the pain appeared to worsen. Bruce and I were disappointed that she was not able to enjoy the night to the fullest. Even the rodeo clown, Stripes, had a hard time making her smile. Bruce stuck around with Ross and I headed home early with Lucy. She did get a chance to participate in the rodeo events with a real (handsome… oops! Did I type that?) Texas Ranger named Pete AND ride in a carriage in the grand entry parade. It was an awesome experience! I felt terrible that she was feeling bad and not able to enjoy it as much.
Anyway, she started running a fever that night and we checked into the ER early Friday morning. I was sure (yes, again) that they would just give her an antibiotic and send us on our way. But NO… her blood counts came back really low and that apparently is grounds for an overnight or two. Unfortunately, there were no beds available that day. Lucy and I hung out in the ER until around midnight when she was finally moved upstairs to the oncology until. She talked constantly that day about the rodeo and all of the details of the whole event. She even reenacted the Stripe the Clown's rope tricks. So, I guess that she did get a lot more out of it then we thought. That’s great!
It is Sunday night and we are still here. Lucy’s blood counts have consistently dropped. I am not sure why? Her fever is gone though and she looks great. She reminds the doctors of this too. They are waiting on results from blood cultures. So far, there is no evidence of bacterial growth. Hopefully, there won’t be anything growing tomorrow either and even though she is neutropenic, they will send her home. She has been in isolation here, so she cannot have contact with any other patients. Yesterday, she had a few of her cancer friends standing outside her door while she played flash cards with them from a distance. Our friend Preston is here getting a few more rounds of chemo before he comes back for his bone marrow transplant. Ryan, our neighbor, is here getting his chemo too. Lucy has really wanted to go out of her room to play. Today she was begging Bruce to ride a bike in her room. Yes- she does this while he chases behind her with her IV pole. She is being pumped full of antibiotics. She had a reaction to one the last time we were here, so they give her Benadryl beforehand. It really knocks her out for a while, so her nap schedule has been pretty off. We were up playing beauty spa until 11p tonight. I am exhausted, but she looks gorgeous!
I am pretty sure that Ross and Julia have driven my mom and dad crazy. They kept them for us this weekend. We are really missing them now. Hopefully, tomorrow we will be back to our usual crazy routine.
February 16, 2011
I hope you all had a wonderful Valentine’s Day.
I am writing to tell you that my heart broke today when I learned that an angel earned her wings. I feel so honored to have had an opportunity to have met our friend, Sarah Chidgey-Hughes. She has been instrumental in changing my outlook on life and strengthening my relationship with God. As Eric, her beloved husband stated, “Sarah's light has shown so bright that this earth can no longer contain it. It's time for her to go to the true source of that light, to stop being the lone lantern shining into the darkness, but to join the grand symphony of radiance.” I know that I am just one of many lives she has touched. Her sweet and energetic spirit will live on in my heart and the hearts of many others. Please pray for her family and friends as they find the courage to go on without her.
Shine bright firefly, shine bright!
February 11, 2011
I wrote that last update a few weeks ago, but didn’t post it. Right before I was going to update, I found out that Mya, another little cancer warrior and friend of ours had relapsed after more than one hundred days of being cancer free. My heart broke and I became filled with a vicious fear that I somehow keep tame most of the time. The next morning, I received an e-mail from my friend Celeste, Preston’s mom. Preston was being called back to the battle field too. After months of chemo-free living, he was directed back after a routine blood count visit. Preston’s next treatment plan will include a bone marrow transplant. Luckily, with the help of donors, a bone marrow match was found for both Preston and Mya and they will be victorious again. This time taking the awful beast down for good!!
So, I moved slowly through the past few weeks with a very heavy heart, feeling as if I had crawled even deeper into my “cancer cave”. I prayed a lot and tried to be a good listener. Sunday, Father Clint began his sermon by asking the congregation how they were doing. People called out “greats” and “terrifics”. Then, he responded by saying “Really?” He said that we should take a closer look at the world around us and may be reconsider our answer. He went on to say that we should not close our eyes to the dreadful things in our environment. Turn on the news, look and pay attention… and then, take it all to Him. The ability to take action will then come from sharing these heavy weights. This was the reminder that I needed- continue to have faith and let Him take care of the hard stuff. Well, if Father Clint inspired you to listen and act, then I have an opportunity for you. There are lots of people with leukemia and lymphomas waiting on bone marrow matches. Please join (if you are between 18 and 60) the National Marrow Donor Program registry (http://www.marrow.org/index.html?src=tabhome). It is a very simple process and you have an opportunity to truly save a life. Preston’s donor should be getting a call this week. Mya received a transplant from her hero donor (Bill) a year ago. She will kick cancer’s booty this time with some of his cells that were frozen. See? Life Saving! I know that God is taking care of us… it is through you. Our family has certainly experienced your action or good deeds first hand. Thus, I am brought right back to Father Clint’s point. Thanks again for being there for us!
Mom and Niki are taking Lucy for blood counts tomorrow. She is thrilled to get to spend some time with them and has been counting down sleeps all week. I promise to post some new pictures of her fuzzy head soon.
January 30, 2011
Lucy had treatment at the clinic on Friday afternoon. She moved a little bit when the nurse was “plugging her in” and acted like it was more painful than normal. Lucy’s nurse, Paula, gave her a small container of play dough when she was finished and all was good again. Since we are not going as frequently to clinic, I think that she has become less comfortable with needles and has developed a greater fear. Her blood counts looked great and her treatment went well. While we were waiting for her chemo in the transfusion room, another little boy sitting across from Lucy was being “unplugged”. With all of the tape and tubing, a disconnect can take a few minutes. Lucy, who was holding her small container of play dough, watched the boy with a concerned look on her face. Then, she walked over to him to show him her play dough; totally trying to distract him from what the nurse was doing. The boy spoke Spanish and his mom, who was holding him down, was translating over his crying what Lucy was saying. Although Lucy’s words were about the play dough, her actions were saying “we are in this together… it’s going to be ok”. What a sweet girl!
Lucy and I had planned on visiting my friend Sarah, who is in MD Anderson for radiation on some tumors that are impairing her ability to walk. We were going to stop by the hospital gift shop to pick up some flowers on our way over there. Before we left, as Lucy was being “unplugged”, we met another new friend; a beautiful three year old girl who has kidney cancer. She was crying and yelling at her mom. She wanted another purple sucker! Her mom, telling me that was all she had eaten today, was giving in. She trekked with us down to the gift shop in another wing of the hospital to find anything close to a purple sucker for her sweet princess. I was reminded of what a long way Lucy has come and explained to the anxious mom that rays of light would begin to shine in her cave. I tried to relay Lucy’s message “we are in this together… it’s going to be ok”.
I saw you all of you at the Lucy Walk and I have frozen that image in my head. Your support is what keeps me going. Yet, I still sometimes feel like I am living in a cave, a kind of cancer cave. I just have so many unanswered questions. The night before Lucy’s appointment, I learned that my friend Sarah would soon have an opportunity to ring the golden bell at MD Anderson. Ringing the bell of hope signifies a patient’s last chemo treatment. Sarah’s body did not respond well to the chemo, so she is going to live life without those nasty side effects. It was so wonderful to be able to share a few minutes with her, see her beautiful smile and feel her warm and hope-filled spirit.
This morning we went to cheer our friend Casey on as he raced 26 miles in the Houston marathon. What a huge accomplishment! The kids had so much fun cheering the mass of runners on as we kept our eyes out for our friend. We were also able to yell a thank you to runners sporting purple Team Leukemia shirts. It felt good! More rays of light were peering in my cave.
Lucy started steroids again on Saturday. She cycles on and off of them for a week at a time during this phase of treatment. It seems like the side effects take a day or two to catch up and then Bruce and I only see fragments of our Lucy girl for a week or so. We are certainly adjusting to the rhythm of this round and know better what to expect from month to month, day to day. Also, Lucy has had some sleeping issues since she started treatments. She would frequently wake up with tummy aches or needing to use the restroom. Every night, she takes a chemo pill on an empty stomach before bed. That seemed to be the culprit. Lucy’s nurse practitioner recommended a medicine at her last appointment that has really seemed to make a difference. Yea for more sleep!
Thanks again for being there for us!
January 20, 2011
Just a quick update….I guess that I should have knocked on that wood a little harder, because just a few days following my last post Lucy developed a little cough. After a sleepless Saturday night with the cough and a “tummy ache”, Lucy met Sunday morning with a low fever. By the time Ross and I got home from church, it was a bit higher and after nap hit the 102 mark. Bruce and I followed our at-home leukemia guidelines and contacted the oncology doctor on call. He sent us to the Texas Children’s ER.
So, I took Lucy to the hospital Sunday afternoon around 4p. She was evaluated, x-rayed and pumped full of antibiotics. She had a pretty severe reaction called “red man’s syndrome” to one of the antibiotics she was given. In the emergency room, I noticed Lucy becoming more lethargic and her skin color changing as the medicine flowed into her. I called a nurse and the doctor hurried in to slow down the administration. The reaction subsided and the next time Lucy was given that medicine, it was run on a slower IV push, and she was given Benadryl beforehand. Her blood work came back good, so I was hopeful that it would be determined that she had a viral infection. I thought we might be sent back home. That was not the case though. Since bacteria can take a few days to grow, the doctors wanted to keep her until they were certain that they could rule out a bacterial infection. Additionally, they seemed concerned that her high fever would not go away. So we stayed in isolated room and entertained each other for a few nights. Aunt Niki came up for a visit and played with us for a while. Lucy and I had a lot of fun on her ipad and swiped it from her for the next a few days.
After various antibiotics, tons of IV fluids and even a cooling blanket, Lucy’s fever finally broke Monday night. The doctors determined that she sounded like she had a bit of pneumonia and sent us home with more antibiotics (yes, in addition to the ones that she is regularly on) for the next ten days. Luckily, Monday (thank you Martin Luther King) was a holiday for me, so I only had to miss one day of work. Even luckier, Super Nana came to the rescue and kept Julia (she had a bit of congestion too) home on Tuesday while Lucy and I were still at the hospital. GG Emma also stepped in when Nana had a dentist appointment on Tuesday morning. Nana kept both girls on Wednesday and today (Thursday). Bruce and I feel so blessed that our kids get to spend that time with their Nana and we don’t have the stress of missing work days. I know that they are so loved by her, and it just makes my heart sing to think that my kids get to share some special time with her. I know that they are both loving her attention and creative and fun ways.
It is good to have everyone back home tonight. I am really looking forward spending our weekend together. I hope yours will be filled with big smiles too!
January 12, 2011
Merry Christmas and Happy, Happy New Year!
I am totally embarrassed that it has taken me this long to give you an update on Lucy. The days are moving along at the speed of lightening and most of the time I am lagging somewhere behind. Just out of college, I once complained to my dad about the rapid passing of time. He told me that it only speeds up. My dad said that time is relative. As you get older and experience more time, a day becomes a smaller fraction of your being. While when you are young (say three years old) and have experienced less time, a day is still a pretty big part of your life. Looking at time like that makes me appreciate the minutes (their long ones and my short ones) with my children even more!
I feel at least 100 years old, because I blinked and the holidays were done and gone. They were wonderful though and we are left with tons of happy memories... well, mostly happy.
Let me fill you in on a few…
Bruce jokes with Lucy that she got her hair for Christmas. It is on its way back. She has a very soft and fuzzy head and looks pretty adorable if I must say so myself.
Lucy has continued to do well in this maintenance round of treatment. She gets treatment daily at home via pills and continues to go into the clinic at TCH every other week. My parents have been taking her once a month so that Bruce and I don’t have to take as many days off of work. She really enjoys the time with them and loves showing Nana and Papa around “her clinic”. She is also scheduled to continue spinal taps on a three month schedule. Although no leukemia has been found in her central nervous system, the doctors continue to put chemo in her spinal fluid as a precaution. Apparently, that nasty cancer has a tendency to sneak its way in if untreated. Unfortunately, this will be a part of our schedule for the next two years. Her treatments have all gone well and her blood counts have been sort of bouncy. I was told that this is common as her body gets acquainted with the new maintenance doses of the chemo. Even though she has had a few declines in her immunity (ANC), the doctor did not tell us to pull her out of school. Miraculously, the girl has not been sick at all. That was one of my big fears as we were released back into the public in the midst of cold and flu season. But, so far, so good! Knock! Knock!
She had a spinal tap the day before New Years. Cousin Nick, home from college, spent the night and went to the hospital with us early the next morning. I was a little worried about getting him moving for our 7am appointment, but he made it out and didn’t even complain. Lucy and I loved having him along. She wanted to put a beauty spa mask on him, but I spared him and we occupied our time with books and games. Lucy was given a heavier amount of sedative (a new protocol) and had a difficult time after the procedure. She was really fussy and irritable and had a really hard time laying still. She complained of hunger. So, as soon as she was able to eat, I heated up some of the lunch that I brought her. While we waited a few minutes for it to heat up she fell into a deep sleep. So Nick and I gobbled down the lunch and got her home into her bed. When she woke up, we sat around the table and had a snack. She leaned over and whispered in my ear, “Mom, will you ask Nick if he thinks that I was brave?” I said, “Why don’t you ask him? He is right there.” She shook her head no. I think that she remembered crying and fussing and was worried that she had disappointed Nick. I asked him if he thought she was brave. He replied, “Heck ya! I am going to tell all of my friends about you.” She smiled from ear to ear! It was good to be able to spend a little bit of time with him.
Here’s another great memory… Niki’s neighbor, Amber Dugosh, is a kindergarten teacher at Kilpatrick Odessa Elementary in Katy. Her school conducts a “pay it forward” program every year where each grade level is given $100 to somehow pay forward and serve their community. Amber suggested that the kindergarten do a “Kids Walking for Kids” walk-a-thon fundraiser for the Snowdrop Foundation in Lucy’s honor. It was a HUGE success! The kindergarten students and teachers raised $4,612 for Texas Children’s cancer research and scholarships and invited us to attend the presentation of the check to Kevin and Trish Kline (Snowdrop founders). In addition, they surprised us with a poinsettia filled with gift cards. It was truly an awesome event and our family felt so honored to be a part of it! These are amazing people and an incredible Kindergarten team!
Here’s a not so great…The week before the holidays Bruce severely cut his pinky and ring finger on his left hand while cleaning a hanging deer at his friend Dan’s place in Conroe. We met with a hand surgeon in Houston that Sunday night and he had surgery the next day. He is still recovering and has very limited use of his left hand. It has been frustrating for him to not be able to do simple things that were taken for granted before… like buttoning his pants. We are praying that the time he is spending in hand therapy will pay off and that he will eventually gain full use of his left hand again. In the meanwhile, with a little Velcro, Lucy and I have had fun making hand puppets out of his felt casts.
Another great …The Stuff the Sleigh event in Katy- We had received an invitation to this event at the clinic and I thought it would be a fun opportunity for the kids to see Santa. It was perfect! Santa was so personable and even had two of his hardest working elves with him. The kids LOVED it and still talk about things that Santa told them. The only not so good memory was when Santa explained to the children that he really likes cold milk when he is in Texas, Ross raised his hand and told him that his friend once left a cold beer out for him and he drank it. I just tried to act like he belonged to someone else for a while. Although, I guess it could have been worse, he could have started by saying “At my house…” Santa also did some shopping and gave the kids the most perfect gifts. We packed them in the car and saved them for Christmas morning. It was really a great surprise! Those presents, the kid’s excitement and all of our many blessings really made Christmas morning magical. Bruce and I had so much fun watching the kids open all of their presents and really loved being together with our families. We were able to spend Christmas Eve with Bruce’s sister and brother-in-law, their girls (Sam and Kelly) and GG and Papa from Tulsa. Then we celebrated with my family on Christmas day. I love getting together with everyone!
I so enjoyed being with Bruce and the kids over the holidays. But, dad was right. My minutes have turned into seconds and we are all back at work and school now. I am totally drained at the end of each day and forgot how difficult it is to work and be a mom. I just try to appreciate all of the minutes, long or short, and hope that you are too. I can’t close without telling you that weighing heavy on my heart and soul has been thoughts of Sarah Chidgey, my friend and teaching companion from Meadow Wood (my old school). While God has put his healing hands on Lucy, it appears that He is guiding Sarah down another path right now. This experience with Lucy has blessed me with a dramatically different outlook on every aspect of the world. I value even the speediest of minutes and hate the thought of my friend not being able to enjoy them because of pain or sickness. Please keep Sarah in your prayers. One more thing- someone told me that they hoped this year is a better one for our family. While 2010 had some downfalls, I have to tell you that I feel that we have been incredibly blessed. God has guided us through the year and introduced us to so many wonderful angles that we did not even realize we had. Thank you for caring about us and making our year so wonderful!
Happy, happy New Year!
November 27, 2010
Happy Happy Thanksgiving! I waited way too long to sit down and write an update. I have so many things that I think about writing, but the days just keep zipping by before I sit down to do it. First and foremost, I have to begin with a huge THANK YOU! My awesome sister Niki, brother Tommy and parents organized the most spectacular “I Love Lucy” walk. The support and love show by our friends and family have lifted our spirits to indescribable highs. It was sincerely a perfect day- from the blue skies and seventy degree weather, the Girl Scouts and Boy Scouts passing out water donated by HEB, the signs displaying Lucy’s pictures to the sea of good friends in pink “I love Lucy” t-shirts. It was just perfect! I frequently replay that day in my mind as it is one that we will NEVER forget. Thank you so, so, so very much to everyone who participated in any way. You are truly amazing and we are so grateful to have you in our lives!
We have adapted to the routine of maintenance, the final round of Lucy’s treatment that will last at least two years. I asked Dr. Kamdar for a monthly print out of her medications because I am not comfortable enough to fill her pill box each week without that as a guide. Lucy takes quite a few pills and even though the medicines and doses follow a pattern each month, I still fear that I will forget something or mix things up with the absent mindedness I sometimes display. Most of her treatment is done at home now. She goes into the clinic twice a month on Fridays. One time she only has to get her blood counts checked and the other monthly visit is for chemotherapy through her port. She will get spinal taps a lot less frequently now, every three months. At her treatment the Friday before the “I Love Lucy” walk, Lucy was officially released to go back to school. The extension on my leave of absence from teaching expired that same week. So, we were destined to start back together. I have to tell you that after basically being quarantined for the past six months, it was a scary feeling. Lucy and Julia, who has also started daycare, met their teachers on the Thursday prior to their official start. I had prepared Lucy for the day by telling her that she would have some old friends (from her previous class) and some new friends in her class. I even taught her an old Girl Scout song that I remembered: “Make new friends, but keep the old. One is silver, the other is gold.”On meet the teacher day, we dropped Julia off in her classroom and then walked together to her room. Her class was having circle time. Mrs. Kit (Lucy’s teacher) signaled for Lucy to join her. She put her arm around Lucy as she stood in front of all of her classmates. I watched Lucy's eyes scan their faces, none of them familiar. Then I saw tears pour down her cheeks. From the doorway, I explained to her teacher that I had told her that she would see some “old friends” and I told Lucy that it would be ok; she will have a lot of new friends. So, she was introduced to her class that day and it has not taken long at all for those silver friends to turn to gold. She started school on the following Monday never looked back….
I did though. In the week prior to Lucy meeting her teacher, while picking up Ross from school, the director of the daycare, Stacy Burkhart-Brezina, excitedly met me in the hallway. She told me that they were looking forward to Lucy’s return and had prepared Lucy’s peers by sharing a book with them called The Lemonade Club by Patricia Polacco. She said that the book was a little too old for the kids, but Mrs. Kit was planning on sharing the pictures and relaying the general ideas. Although I was familiar with that author, I had not seen that book before. I asked to borrow it for the evening to share with Lucy. The story is about a young girl who is diagnosed with leukemia. Like Lucy, she gets pretty sick from the chemo and is banned from public for a while. Upon her return to school, she finds that her teacher and all her fifth grade classmates have shaved their heads. Anyway, that is just part of the story. I read it to Lucy and Ross that night. I tried not to, but I cried when I read the words. Lucy kept looking at the pages and then back up at my face. I would reassure her and keep reading. Before we were half way through the book, Lucy asked “Please can we read it again tonight Mom?” She really wanted to digest it all. We did read it again and then she requested it again in the morning before we had to return it. It is a great story and I thought it was so wonderful that Mrs. Burkhart and Ms. Kit went out of their way to welcome Lucy and make her feel so accepted.
Well, it did not end there. Monday morning, Lucy officially started back for the full day. She was dressed in a pick outfit and wore a cute knitted brown hat to cover her soft fuzzy head. I walked her into the building and saw Ms. Kit in the hallway. She was wearing a pretty flowered gardening hat. Of course, I commented “Oh, look there is Ms. Kit and she is wearing such a pretty flower hat today”. As Ms. Kit walked us to were the rest of the class was sitting in the hallway, she explained that they were ALL wearing hats today… for Lucy. Sure enough, the girls and boys in Lucy’s class were all sporting an assortment of hats. Baseball caps, stocking caps or other floppy hats were on every head. I am pretty sure that is when those new friends quickly turned golden. Lucy waved goodbye and I turned away and walked out the door- sobbing. It was a bittersweet event for sure.
I sure miss spending the days with my girls (and Ross when I could). I feel so fortunate for every minute, every second that I was able to be with them and take care of them. I am so glad that I got to do it! Spring Branch ISD has reassigned me to a new position at a new school. I dreaded having to leave Meadow Wood Elementary. The community there has been so supportive. It felt so much like home and I really thought that I had acquired a grasp on the medically fragile position. However, like Lucy, I am making new friends and learning new things. I am now a resource teacher at Sherwood Elementary. I am really enjoying my students and get to work with one of my fellow college classmates. Additionally, the school is not far from where the kids go to daycare. The only challenging thing for "Little Miss Night Owl" here is the 7:30am start… meaning that I have to have the dogs taken care of and the kids dropped off at daycare in time to get to work at 7:15am every morning. The weeks that Bruce is out of town, I really scramble. We look like a three ring circus, but I am getting better at it. Tucking Ross into bed one night he asked me why I always say “Everyone in the car!” in the mornings. I explained to him that I had to be at work at a certain time and that if I was late, my boss may think that I am not a very good worker and may want someone else for the job. The next morning, Ross yelled, “Go Mom Go! We don’t want you to lose your job.” I just love Ross and yes I AM extremely grateful to have a job AND one that I take pleasure in!
Lucy is really enjoying being back at school. My mom and dad picked her up early on Friday and took her to clinic to get her blood counts so that Bruce or I would not have to miss work. Her ANC (immune system) counts were low, but Doctor Kamdar did not seem concerned and just told us to keep practicing good hygiene and hand washing.
On Monday, Bruce brought a live turkey to Ross and Lucy’s school to show the kids before the holiday. I told Bruce that he had to translate Tom’s “gobble, gobble” as “eat fish, eat fish”. I’m not sure if he did, but I think that Bruce and the kids really enjoyed seeing a real turkey up close and hopefully not too many kids were traumatized on Thanksgiving Day when they sat down to dinner. We were all happy to have the time off to spend together over the Thanksgiving holiday. Lucy and all of our family had a wonderful time together. Our family and neighbors, the Johnsons (who we consider family) had our annual Turkey Golf Scramble and then shared a delicious feast together at Nana and Papa’s. At dinner, Niki pointed out a few of the year’s highlights for each of our families. Starting colleges, new babies, engagements and our health were just a few. It has been a good year and although Niki just shared a few of our blessings, we are well aware that the gifts we have received from Him are far too many to count. Our God is good!
This morning, Lucy and I got the Christmas decorations down from the attic and finally put away the lingering Halloween stuff. My neighbors Christmas lights across the street were really making our ghost flag and the flying witch in our window look bad. May be Lucy was a little worried that Santa may be scared away too. At dinner tonight we were talking about all of our Christmas decorations. I told the kids that we even hung the mistletoe by the front door. I jokingly added that when someone knocked, I would invite them in and plant a big wet kiss on them. After dinner, Lucy asked me to show her where that foot thing was. She got very frustrated when Bruce and I admitted that we did not know what in the world she was talking about. Then she clarified herself… “you know, that foot thing that makes you kiss!” Ohhhh! The mistleTOE- tee, hee, hee!
One last thing- IW Marks, the jewelry shop that hosted the auction for Lucy in June, is having a holiday party/benefit for Camp for All on Thursday, December 2nd from 6-9pm at their store. There will be a raffle and silent auction where all proceeds will go directly to the camp. You can RSVP at 713-880-3387 or tc@yousquaredmedia.com. Looks like fun!
Thank you for caring and thank you being such a strong hand holding Lucy up! We are blessed! Happy Happy Thanksgiving!
October 19, 2010
Just a quick post...
Niki asked me to tell you that the t-shirt deadline has been changed to October 26th.
Therefore, if you want a pink “I love Lucy” t-shirt, you have to place your order before October 26th via www.ilovelucywalk.com.
Thanks so much for all of your efforts with this walk. I really can't believe it!
Lucy is doing great and has finished her first round of steroids for maintenance. The side effects are not as severe as they were when she was initially on the steroids, but it is always a good thing when she is finished with them. She seems to be having minimal side effects with all of the other medicines so far and I think that I see a little bit of fuzz on her head.
In the grocery store today as we were checking out she was doing her part to try to add a few dollars to our bill by picking up random things and asking “Can we get this?”
I would just blindly reply “no!” Then she held up a little hair brush and stared at it for a second and laughed. “Mom, I was about to ask you if I could get this, but I don’t even have hair! Ha, ha, ha!” Then, a few seconds later… “Could we get it for Julia?” Me-“No!” She is so funny.
Thanks for being there for us!!
October 10, 2010
It is Sunday night and I am totally worn out, but delightfully so. We had a full weekend and everyone was included… even Lucy!
Treatment Friday went well. Lucy was scheduled for a spinal tap and had to fast for the procedure. She hadn’t eaten since dinner Thursday night and was starving by her 10:15am appointment. Luckily, we were called back fairly quickly for her labs (blood work), so I was encouraged that things would move swiftly. They did not. There was a problem with the lab and it took a few hours before all of her counts came back. That was ok. We entertained ourselves by playing beauty salon with some spa like stuff that I brought from home. Ms. Dana, the Childlife Specialist came in when I was trying to find some relaxing spa music on my phone and told us that she had a portable “bubble machine” that had relaxing music. So, a few minutes later she rolls in a portable sensory station. It was so cool and reminded me of the motor sensory lab in my Meadow Wood Medically Fragile class. Lucy loved it! The relaxing cd and sensory lights were the perfect effects for our spa. We had a lot of fun and really kept our minds off of the long wait for Lucy’s results and medicines. By the time the nurse came in to start her spinal tap at 2:00pm we were both feeling calm and refreshed. (See the attached video for beauty proof.)
When Lucy’s blood counts came in, Jalane came into our room to share the results and welcome us to maintenance. Ok- she did not really make a big deal about it, but I certainly felt like celebrating. We are moving into the next AND FINAL round out of this mess! It last two years and comes with A LOT of pills, but on June 11, 2012 Lucy will no longer need treatment! Yes we have a real end date. This will be over! In the meanwhile, Lucy will continue to go into clinic at TCH every two weeks- alternating one week for blood counts and one week for treatment. She will continue to need spinal taps, but only every three months. All of the other chemotherapy will be done orally at home. Jalane wrote the prescriptions and made me a calendar for our new daily routine of drugs. It seems like so much right now, but I suppose that in a few weeks, we will be accustomed to it all. Thank God Lucy passed that pill swallowing class!
The nurse asked that Lucy use the restroom before the procedure because of the amount of IV fluids that she had. Well… on the way out of the bathroom we trip over the line and pull her IV out of her port again! Ugh! She was such a good sport about the re-accessing. Our fabulous nurse, Pat, got everything put back in place pretty quickly and the spinal tap procedure went by without a hitch. Lucy did of course have a bit of a hard time remaining still for 30 minutes afterwards. She kept asking me when all the doctors were going to come in. I HATE that part of it. I know that she is so confused and uncomfortable. I try to fill her in and comfort her as I watch the minutes tick away on the machine on her IV pole, praying that they would just go a little faster. When her time was up, we had a feast in her bed. She sat up and gobbled down bits and pieces from the lunch I packed. She was famished. While she was eating, the nurse came in and completed her treatment by administering more chemo through her port and de-accessing her. It was time to go home. I stopped by the pharmacy to pick up the medicine that Lucy was scheduled to start. They had two of the prescribed pills, but not the one she needed to take that night. The pharmacist called several other pharmacies and had no luck finding the drug. Finally, Bruce called the TCH doctor on call and arranged to pick up enough of the medicine at the emergency room pharmacy to hold us off through the weekend.
With approval and good looking ANC counts, I started our busy weekend that night by taking Lucy and Ross to the opening of the new pirate exhibit at the museum. It was a late night for them, but we had a blast and really enjoyed the exhibit and activities. Saturday morning we rode our bikes to Ross’ soccer game and watched him score his first goal. The rest of the day was spent playing outside and having a family movie night. Sunday was packed with Sunday school, a visit to GG Emma’s place and the seeing Aunt Niki and Nick at the Katy Rice Harvest Festival. It was certainly a fun filled weekend and Lucy was thrilled to be included in everything.
Thanks for keeping up with us and sending all of the prayers. God is so good!
October 4, 2010
Do you believe in miracles?
Lucy developed a cough Thursday night and started running a fever Friday morning. I was changing Julia when Lucy came up behind me and hugged the back of my legs. I could feel the heat off her body through my pajama pants and my heart sunk.
My mom was planning on coming over early that morning to watch Julia in hopes that I could get in to see my doctor before Lucy’s appointment that morning. Lucy’s clinic appointment was not scheduled until 9:45am, but we left early and went straight there, my issue would wait. I told the receptionist that she felt warm. They drew her blood for labs and called us back fairly quick. Once the nurse took her vital signs and announced her fever, she directed me, with a regretful look on her face, to take Lucy down to the ER to be admitted. What did she think would happen next? She told me that they would most likely take culture samples and give Lucy IV antibiotics. After more questioning and discussion, Robyn, the nurse, arranged for the antibiotic to be given and cultures drawn there in the clinic. Thank God! She walked us back to an isolated room off of the main transfusion room. Lucy commented that it looked like a “sleepy medicine” room. The area did include all of the same medical devices as a procedure room where she gets her spinal taps. It also had a sliding glass door and curtains that you could shut to mute some of the transfusion room noise.
A wonderful nurse came in to access Lucy’s port and administer fluids and an antibiotic. The nurses and doctors “watched her” as her temperature and heart rate fluctuated over the next several hours. Her vital signs had to be at specific numbers before they would discharge us for the day. Finally, at about 3:30pm she met the criteria. Jalane suspected that Lucy had a virus of some sort and sent us home. However, she told me that she called the oncology doctor who was on call this weekend and told him to be on the lookout for us. Jalane apparently did not expect this fever to disappear. Our rules were clear, Lucy could not have any medicines to suppress a fever after 9:00am the next day and if the symptoms progressed, we should return via ER.
I was so relieved to be going home, but guessed that we would probably be spending the rest of the weekend there. At 7:00am this morning, I was feeding Julia in the rocking chair. Lucy followed her normal morning ritual. With her tattered blankie in hand and thumb in her mouth, she came in our room and nestled her bald head up in between Julia and me. No heat. She actually felt kind of cold. Of course, I took her temperature a few times to be sure it was normal. It was- No fever!
It is such a beautiful weekend, and Lucy really appeared to be feeling pretty good. She was eating and had a lot of energy for the most part. We went for a long walk and played outside. Cousins Sam and Kelly and Aunt Diane came over to play and we made our own pizzas for dinner. Lucy had a great day, and I cannot tell you how totally blessed Bruce and I feel to have had the opportunity to be together as a family.
I volunteered at Texas Children’s Hospital for several years before I had children. I worked mostly in the teen rooms and playroom in the bone marrow transplant unit. The children on that floor are totally isolated, and the hospital had very strict guidelines about who may be admitted to that unit only after they scrubbed in. I would ride my bike home after my shift down the tree lined University Street. Frequently, I cried on the ride home. I hated the thought of those children not being able to experience the beautiful outside and being separated from their families. Never in a million years did I think that my child might be restricted like that. God is good and I thank Him for every moment we have together.
I think that Lucy being allowed to spend this day at home was truly a miracle- all thanks to your prayers and support! In fact, I believe that God has enabled us to avoid many difficulties during this journey. We are so fortunate! Sunday- no fever, Monday- no fever…
If we can make it to Friday fever-free and her blood counts stay high enough, she will get another spinal tap and chemo to start the maintenance round of therapy. This round will last for the next two years. The chemo will be administered in lower doses. So, her blood counts and immune system should improve and stabilize a bit. Hopefully, we can join the public world again soon.I do believe in miracles! Thank you guys!!!One more really AWESOME thing…Niki, my sister has organized a fun walk in Lucy’s honor. We are really looking forward to it! Tommy, my brother, created a website where you can register: www.ilovelucywalk.com and get one of those oh so cute pink “I Love Lucy” t-shirts. “You guys are the best!” – Lucy
Thank you!
September 26, 2010
Lucy is doing great! She looks good (lots of color) and spends most of her time away from “her spot” on the couch. Her clinic visit went very well on Friday. Jalane, the nurse practioner, was a little bit concerned about Lucy’s continuous weight loss. She has gradually lost a few pounds each round. Although she is eating some food, it is not enough for the energy that she is expending. It was suggested that we continue to try protein shakes or an Enfamil type drink. Luckily, her appetite has slowly reappeared this week and she is increasingly eating more. I am a master eater and have been working with her daily. J
She was scheduled for another blood transfusion Friday, but according to the results of the blood counts, she did not need one. Her ANC (which gauges her ability to fight off sickness) however, is bottomed out. Bruce and I were told the low ANC is normal and expected at this point. Lucy is “grounded” again this week.
She has been so good about this state of isolation. On the weekends, Bruce and I divide and conquer… at least that’s what we call it. One of us stays here with Lucy and the other one does the weekend run around- to soccer games, birthday parties, grocery store, church, etc. Recently, two birthday parties were for friends in our neighborhood. Lucy asked if she could just walk Ross down and have a peek at the cake. We allowed her to do this. In both cases, she walked back home without fussing or complaining about not being allowed to stay. She seems so mature sometimes and has developed such and understanding for what is going on. We were both so surprised and proud of her.
She is taking this whole process with such grace and stride. For example, I thought the loss of her hair would be a much bigger deal then it was. Normally we all sort of forget about it as she does not seem to miss the hair at all. In fact, Lucy has come up with a slew of reasons why it is better to be bald. Here they are:
Lucy’s 10 Best Things About Being Bald
1. No hair washing
2. It is a lot cooler
3. Julia does not pull it
4. Ross can’t make funny shapes with it in the bathtub
5. It does not get in my face when I do a summersault
6. Hats fit better
7. No haircuts
8. No combing or fixing it
9. Mom does not get hair in her mouth when she kisses my head
10. You can rub it when you don’t feel good cause’ it is so soft
Oh, how I love that girl!
Well, from here we are basically waiting for her to hit the bottom (with her blood counts) and then bounce back up. She had A LOT of medicines over the last couple of weeks and her body is processing all of that now. For the next two weeks, she is just scheduled for check-ups (including blood work) and possible transfusions. Jalane told us that we should just watch her this week for any signs that she needs blood (pasty skin, bleeding gums, bruising and/or fatigue), but otherwise she is off the hook until next Friday.
So far, I see absolutely no signs of any sort. This morning, she was sliding down the side on a towel in an effort to go faster. She practiced soccer with Ross in the yard, went on walks, played in the sprinkler and wading pool and preformed perfect summersaults, without getting hair in her face. She even ate a donut with sprinkles! Every day is a little closer to maintenance.
The rest of the crew is keeping us busy too. Julia “Wild Woman” Schuler is walking. She stands up, takes a few wobbly steps and plops down. Then she does it all over again until she reaches her destination. She has learned a few more new tricks including waving goodbye, raising her arms over her head and groaning when I ask her how big she is, smacking her lips together when it is time to eat, making panting sounds for a dog, a high pitched squeal for a cat and she has a small vocabulary of one syllable words. She is hilarious to watch and keeps our whole family on our toes. Ross is loving school and is exhausted by the time we pick him up. Last week his Pre-K class learned about the color word green. So, he brought a toad to school on Tuesday and a green Japanese beetle to class on Thursday. They were green…
Thank you for keeping up with Lucy and keeping her in your prayers. Your support has removed so much of the pain from this process. I don’t know what we would do without you.
We love you!
September 18, 2010
Lucy’s had a hot ride to clinic yesterday... and I mean HOT! Nana showed up at our house at around 9:00am to go with us to Lucy’s 11:00am check-up and chemo administration appointment. Lucy wanted to take Julia along with us to show her off to the staff there. She is such a proud big sister. Thinking it was going to be a shorter day at the hospital, I went along with it. Julia can be quite the handful these days- I’m serious! Shortly after Nana came we heard some sweet sounding honks coming from outside. Aunt Niki and Wendy made a surprise visit… in a black convertible Lexus! Niki had the top up and when she rolled it down several purple balloons flew out. Lucy was stunned and just had the silliest smile on her face. Niki asked if she wanted a ride. Lucy hopped in and they rode around the block. From there, Nana, Julia and I followed them (in my Minivan) to brunch at Dry Creek and then off to treatment. What an awesome start to the day! Niki bought the weekend with the Lexus in the IW Marks auction. We were so glad she shared it; and of course we bragged to all of the nurses about it! Thanks so much for letting us be a part of that Niki!
Well, once again we ended up shutting the clinic down. It was another long day. We waited more than two hours before we were called back to a room. While we waited, we fed Julia in the lobby. She had green baby food everywhere and looked like a little swamp monster. We had a super nice nurse who “plugged Lucy in” and took her blood samples. Just when I thought that we were finally moving along… her counts came back. She needed blood. I was a bit surprised. She was kind of quiet and lethargic that morning, but the day before she seemed to be so full of energy. She wanted to go to the park and played on almost every piece of equipment there.
Needing blood meant the afternoon would be at least another 3-4 hours long. You have to wait for the blood to be ordered and then the long IV administration. Thank God Nana was there to help keep us occupied and tame the swamp monster (Julia). Lucy was given her chemo first and then her blood. Hopefully that go go juice will get us through the week. She is still taking the special oral chemo at home daily. I give it to her at night because it has to be taken on an empty stomach. She has not wanted to eat much, so I am afraid to give it to her during the day and limit an opportunity where she may feel like eating something. Additionally, Doctor Daddy (Bruce) and I will be giving her chemo through her port for the next three days. A home health nurse will come and deaccess her on Monday again. I think that this week will go smooth for us now that we know the ropes. Lucy will have a check-up again next Friday. The nurse told us that we should anticipate her needing more blood. I don’t think that we will be bringing Julia. J GG Emma- we are so blessed to have you in our lives! I would be one REALLY crazy mama if we were showing Julia off at every treatment. The good news is: after the round of treatment this week we just have to wait for her counts to go back up to qualify us for maintenance. (You can’t hear me, but I am singing the word MAINTENANCE!) Please pray that Lucy stays healthy over the upcoming weeks as her counts drop again. The mother of Lauren Ross, another young cancer warrior (9 years old), posted a quote on her Carepage that I don’t want to forget and felt obligated to share- “Don't tell our God how big your storm is.....TELL THE STORM HOW BIG OUR GOD IS".
Thank you for being the wind beneath our wings! Lots of Love!
The Schuler's
September 15, 2010
Several syringes of Cytarabine sit right next to the butter in our refrigerator and a red hazardous material container is on our counter. It is so weird! This whole thing is really so weird. We may have a new normal, but it is a bizarre new normal. I still have a hard time believing it is ours. When I returned home from a long trip as a kid, I can always remember sitting on the stairs in my parent’s house and the stairs seeming much larger than before I left. After a day or so of being home, everything looked right again, and I could return to skipping up and down them blindfolded. I had that same peculiar feeling when I left the hospital for the first time with my newborn babies and when I returned home the afternoon that Lucy was diagnosed. Oddly though, after that event, I STILL feel a little bit like things aren’t right. This time however, it is not limited to my house. The whole world looks different to me. I keep wondering when the old ways will return - maybe when the doctor tells me that she is finished with her treatments and that there is NO chance of the leukemia returning. I hope it comes soon. In the meanwhile, I guess that I am claiming this as our new normal. Lucy’s blood and ANC counts were high enough for treatment last Friday, September 10th. I was happy to get the show back on the road again. Mom, Lucy and I arrived at the hospital at 7:15am. After taking blood samples and seeing good results, Kara, the nurse practitioner, laid out the week’s medicine regimen. I fought back tears and took deep breaths as she ran down the long list of some of the major side effects and then explained to me my duties for the day. I had to set up home health care and go to a special pharmacy down the street (as it is not typically stocked elsewhere) to pick up a new oral chemo that she would be starting that night.
We waited a while for Lucy’s medicines to be prepared. Since she was unable to eat because of the anesthetic, she was a little irritable. Luckily, the childlife specialist, Dana, popped her head in and told us about a party in the lobby hosted by the Periwinkle Foundation. We were all over that! Lucy was a little limited in time, but she got her face painted and made a cute picture frame. When the time came, she was given her “sleepy medicine” (it actually just causes her to forget the event) and curled up like a good kitty for her spinal tap. Using an epidural type needle, Kara exchanged some of Lucy’s spinal fluid for chemo. The challenging part was getting her to lie still for thirty minutes after the exchange. After five or ten minutes, the anesthetic began to wear off, and she attempted to understand her surroundings and figure out what she missed. She would study the movie on her DVD player and look at Nana and me with lost eyes. Then, frustrated she would ask me to rewind the movie stating that she had missed a part. This continued for most of the thirty minutes. I can only imagine her confusion and aggravation. Lucy did ask Ms. Kara if she could pick a prize out of the box after she “tapped her on her back.” So once she was sober enough, she selected a light up super bouncy ball with an light up eye in it. Yikes! After the spinal tap, she got a quick push of cytarabine and an hour IV drip of cyclophosphamide followed by four hours of IV fluids. The IV fluids were given in an effort to prevent any bladder problems. That nasty chemo drug eats away at the bladder lining and can cause bleeding. So… needless to say, it was a long day. Of course, we found a way to make it a little longer. With about 45 more minutes of fluid to go, Lucy tripped on her line and pulled it out while playing hide and seek with the nurse. She had to be re-accessed (without good ol’ numbing cream this time). Looking forward to the opportunity to pick another prize out of the prize box, she did not complain much. At about 7:15 pm she finished her IV fluids and we closed the place down and headed home.
That night after getting everyone off to bed, Bruce and I sat in the living room exhausted. Then, at 10:30 pm our doorbell rings. We weren’t expecting any visitors and could not imagine who it could be. We opened the door to find a delivery man holding a big bag of medical supplies and chemo drugs. Bruce took the bag and together we read the receipt and verified that everything was in there. These were the supplies the home health nurse would be using the next day. It seemed funny. I figured that the nurse would come with supplies.
Shortly after the nighttime delivery, Lucy woke up with a fever. I took it many times in both ears and it did not seem to be changing. I called the doctor on call and was told to bring her into the ER. Although I knew that the fever was probably a side effect of all of the drugs she was given that day and that she could potentially pick up some other nasty illnesses in the ER, I worried that something else might be wrong. Bruce thumbed through the pages of medicine descriptions and their side effects and talked me into waiting. I continued to watch her fever through the night and tried to keep her head cool. It gradually went back down, and I was glad that we did not have to return to the hospital that day. I was so excited when my mom told me that she was organizing a team (our family) to walk in the Candlelighter’s Fun Walk on Saturday. Niki, my sister, had the most adorable pink “I Love Lucy” t-shirts made for everyone. With Lucy being fever free Saturday morning, Ross, Julia and I left her in daddy’s hands and joined the walk. It was a great day and I cannot begin to tell you how blessed I felt that all of my family came together to support Candlelighters Childhood Cancer Foundation for Lucy! It gave me such motivation to see my dad looking oh so cute in that pink “I Love Lucy” shirt! Uncle Tommy and Aunt Gloria made the day even better by surprising everyone with the news of their expected third arrival - a new cousin! What an awesome family! I love you guys more then you will ever know! Thank you for lifting us up!
While we were out walking, Lucy was getting yet another treatment. The doctors had left her line in from the day before. A nurse (Mr. Jessie) came to our house that morning to administer Lucy’s chemo and to teach Bruce the ins and outs of the process. Mr. Jessie informed Bruce that we (Bruce and I) would be administering Lucy’s treatment (via IV) over the next two days. He would return on Monday to remove her line. (Do you see what I mean about things not being normal?) It all worked out. Bruce and I played doctor for a few days, and Nurse Jessie did come back to remove her line Monday afternoon. Lucy was relieved to get it out. Previously, she had a little anxiety about it bothering her. Since her treatment was delayed a week, she had some time to think about it and was concerned that she would have problems sleeping because she would roll over on it or that her little sister would pull it out. The time passed quickly and most of it was not spent on anything concerning her line. She did great! Lucy has had headaches and nausea since her treatments started again. Between bouts of queasiness, she tolerates a few games or some time outside. The crazy kid is still requesting spins on the tire swing! Nana brought Cousin Danielle over Saturday night. Nana babysat the whole bunch while Bruce and I went to a wedding. I think that having her cousin there to play with for a while was a great distraction for her.
She does not have much of an appetite but will ask for a glass of milk a few times a day. I tried mixing a high calorie vanilla protein powder in it today. She raved about how good it was and drank a few sips, but she lost interest quickly. She even turned down shaved ham (one of her favorites). During meals she will sit down at the table with us but offers her food to everyone else. What a roller coaster! She has gone from one extreme (eating us out of our house) to another (rejecting everything). She talks about her school frequently and remembers her classmates in great detail. She always asks me if she can get out of the car when we pick up Ross. She loves to peek in the classrooms and see all of the kids. She seems to be really looking forward to starting school again. Yesterday, I allowed her to peek in the window of her old class. She loved it and really observed who was in there and what they were doing. Going back to school in a real motivation for both of us, and I think that Lucy completely comprehends that she just has to get through these next few tough weeks.
Thank you so much for your continued love and support. Every note, card, call, message, gesture, thought is so appreciated! We feel completely blessed! All these things, these outpouring of good things, have contributed to the changed way that I see the world (the new normal). It IS different, but I see so much good. It is wonderful and I can’t wait to return it!
September 3, 2010
We had an unexpected surprise today. Lucy was unable to get her scheduled treatments because her (ANC) absolute neutrophil count has not picked back up. ANC is the real number of white blood cells that are neutrophils. Her blood and platelet counts met the criteria, but her immune system is depressed and did not meet the required marks, putting her at high risk for infections. Additionally, she was beginning to show some signs of mouth sores (due to the low ANC). The doctors “unplugged” her and told us to return next week. Dr. Kamdar wanted Lucy to have seven good days to rebuild her counts before the second part of this phase. We will take it! I did not know if I should laugh or cry. Of course, I do not want to delay this get well process at all, but it is awfully hard to turn down a break. It seems like she just started feeling a little bit better. We will have a restful week and be ready to tackle the world next Friday. Papa and Nana brought over a delicious rib dinner last night. Lucy and Papa had a rib eating contest and Lucy won hands down! It was a good night, but I could not get this treatment off of my mind. Now I can relax a little and know that she will be stronger and more prepared for it all next week.
Love,
The Schuler Family
August 26, 2010
The hair fairy came. This happens all the time… I boast a little or open my big mouth when I should be listening and it backfires on me. The day after I bragged about Lucy’s remaining blonde locks, they disappeared. Handfuls were found on her pillow before lunch, and by the time Bruce got home from work, she was basically left with just a few fuzzy clumps. The remaining bits washed away in the bath. That afternoon I lifted her up to the mirror in the bathroom. I didn’t want her to be surprised when she caught a glimpse of herself. She stared at her beautiful reflection for a few minutes and then rested her head on my shoulder as if to say “oh, well”. Later that day after dinner, she was on the couch and looked at Bruce and said, “Definitely can’t do a pony tail now.” It seems to make no difference to her what-so-ever. The next day she went for a ride in the bike trailer, played a few games, read a couple of books, and had a visit from our friend Marci. That afternoon, Lucy, Julia and I went to pick up Ross from Pre-K. When we returned home, Lucy immediately crawled up into her “nest” on the couch and requested a book. Just as I was reaching to open the bookcase, I noticed a package wrapped in pink paper and a silky pink bow behind her pillow. I asked her what it was and she shrugged. I asked Bruce and Ross if they knew where it came from. No one seemed to know… Ross and Lucy worked to open a decorative little treasure box with a dancing fairy inside. It plays music when you wind it and open the box. There was a note inside from the “Hair Fairy”. She told Lucy that she was beautiful (with or without hair) and brave. Amazing! We had no idea that there was such a Fairy! Lucy’s eyes twinkled and a proud smile swept across her face as I read the note. It was like Christmas for me! It is moments like these that I realize how well paid we are as parents.
Shortly after we discovered the “Hair Fairy” gift, we sat down to dinner. Ross put his hand on his head and said, “You know, I believe in God and I believe in Santa… but I am just not sure about this Hair Fairy. I guess I just have to see him or something.” Without laughing (only a little smile creeping out), I explained to him that most people probably don’t know about the “Hair Fairy” because most people do not lose their hair. It is pretty rare and he probably does not have a whole lot of work. Lucy announced that she thought that the Hair Fairy was a girl because the present looks like it was girly and wondered how the fairy knew her hair fell out. I thought that she probably hangs around Texas Children’s because there are lots of friends there without hair. I am not sure if she is prettier with or without it? Lucy has not felt well this week, but we are defiantly making the best out of the moments that she does. Julia and I are pretty good at distracting her. She has a check-up and blood work scheduled for tomorrow and will have her next treatment on September 3rd if her blood counts are back up. A few other new things: Ross can now ride his bike without training wheels. It only took a few practice runs. Every time he saw that I had let go of the back of his bike, he would panic and crash. We both ended up with a few mouth full’s of grass. It just took a little boost of confidence. Julia is a monster (a friendly one). She pulls herself up on everything and attempts to climb things while grunting sweet nothings. She is very strong and very funny.
Finally, there is a Candlelighters Childhood Cancer Family Alliance 3-mile Fun Walk on Saturday, September 11 at 9:00am (registration is at 8:00am). I really, really, really wanted to put together a team for Lucy. She is going through a rough part of treatment, and I thought that this would be a great way to support her. However, it appears that she will be getting treatment that day and I cannot envision myself leaving her. Team Lucy will have to wait until next year. If I get any different news from the doctors tomorrow I will let you know. In the meanwhile, feel free to participate on your own. It sounds like a fun family event. You can register online at www.candle.org.
We are so blessed! Thanks for continuing to keep us in your thoughts and prayers!
August 18, 2010
I walked into Hobby Lobby the other day and immediately noticed the scarecrows and decorative pumpkins near the doorway. Under normal circumstances, I would have been a little bothered by this; upset that retailers are robbing us of our last few days of summer. They seem to rush the next season on us before we have a chance to fully enjoy the current one. However, that day my outlook was different. The overeager retailer caused me to smile. I thought to myself, “Yep, fall IS just around the corner. People should really be prepared.” If fact, I was very tempted to drag my own fall decorations down from the attic when I got home. The thought of climbing up in our 200 plus degree oven of an attic kept me from doing that, but I am very much looking forward to October and the end of this Delayed Intensification round of treatment.
We made it to Tulsa without a hitch. The Wednesday before we departed, Ross and I went with Lucy to get an echocardiogram to make sure that her heart was in good working order before she started this next round of drugs. Apparently, the chemo drugs can wreak havoc on the cardio system. All was clear and Lucy’s heart is starting out in good shape. That Friday, she had chemo, but no spinal tap. My mom and Ross went with us to that appointment. Immediately after, we picked up Julia, said goodbye to Nana and headed to Dallas. Luckily, Lucy did great in the car. She was so excited about the trip to see Daddy in Dallas that nausea was not even on her mind. She really enjoyed staying at the hotel in Dallas- eating pizza in bed (although she did not really eat any- she loved the idea) and swimming until it was dark outside. The usually long drive to Tulsa seemed a lot easier broken up like that.
We had a wonderful time visiting GG and PaPa in Tulsa. We spent every day at the pool and cherished every minute of it. It felt like we were at a vacation resort! We all enjoyed the rest and relaxation away from our daily chores and all of the days far away from doctors. The night before we left GG and PaPa took us to bingo night at their club. Ross and Lucy were both winners. Ross came home with $70.00 burning a hole in his pocket. We made a Bucky’s stop on the drive back where they both blew a little on candy. We told Ross that he won enough money to pay for the gas back to Houston, and he proudly offered it up when we stopped to fill up. He cracks us up - Love him! Those kids were pretty proud winners and really loved spending time with GG and PaPa.
We spent the rest of our break between rounds doing fun Houston summer things: watched an outdoor children’s play at Miller, went to the circus, Downtown Aquarium, final tennis tournament at Memorial Park, library, and Ross did Vacation Bible School and art class. We stayed busy and enjoyed every minute of our little break from doctors.
Lucy started this DI (Delayed Intensification) round on Friday, August 6 with a spinal tap (where chemo was injected into her spinal fluid) and some new ingredients added to her chemo cocktail through her port (doxorubicin, methotrexate, and vincristine). She also started back on steroids that day. She is taking a heavier dose then she took at the beginning of her treatment, but will be cycled on and off of it weekly during this DI phase. My Uncle Rich, Uncle Denny, Aunt Betty, Aunt Connie, Cousins Janel, Christian, and their daughter Aldanna were all in town visiting (from St. Louis and France), and my parents had everyone over for dinner. After a good nap from her treatment that day, Lucy claimed that she was game to go. She was fine and had a ball playing with all her cousins and my Aunts and Uncles. I was so glad that we were all able to go together. I love being together.
The following Tuesday (August 10th) Lucy had a dose a PEG-Asparaginase delivered via injection into the muscle in her thigh. She has not had this drug since we were in the hospital, and it has an extremely high allergy risk. In fact, I had to pick up an epi-pen from the pharmacy before this appointment and was trained in its use before they delivered the shot. Lucy had to be monitored for two hours after the dose was administered before we were released. She did beautifully! No reaction what so ever… well, other than not liking the shot in her leg. Something funny- After her shot, the nurse told her that she could choose a prize out of the prize box. She loves this and generally looks forward to it each appointment. The week before, I saw a whoopee cushion and tried to talk her into it. She, however, had her heart set on these Minnie Mouse sippy cups. This week, she went straight to the whoopee cushion though. I was so proud and couldn’t believe that it was still there! Having a little experience with these things, I quickly showed her how it works… on the head nurse’s chair. Needless to say, Lucy and I entertained ourselves for the following hours while the nurses monitored her. We whoopeed any unsuspecting looking person we found. One little patient that we “whoopeed” shared with us (and all the other people around that area) that his grandmother let out a “real loud one” in the ice cream section at the grocery store. His granny (who he was sitting next too) nearly feel out of her seat with embarrassment. I could not stop laughing. When we got home, Ross (always eager to know what prize Lucy got) thought it was a great prize too! It is especially funny when we whoopee Julia! Just watch out if the kids direct you to a “special spot” to sit when you come over.
On Friday, August 13th, Lucy had another treatment. This time she was only given chemo through her port. No spinal tap. J This was the first appointment that I was unable to make. It completely broke my heart not to be there with her.
The Thursday prior to her appointment, I began to feel sick. I was nauseous and had a fever and chills. I had experienced these symptoms off and on since the day we had left Tulsa. I chalked it up as a combination of anxiety over the start of this round of treatment and lack of sleep. I just figured that my body was acting out. However, Thursday, I felt like a real slug. My mom talked me into making a doctor appointment for myself for Friday morning. Walking into my ten o’clock appointment, I insisted that I had to be out of there by eleven in order to get Lucy to her treatment. When the doctor saw my fever, he put me on an antibiotic and sent me down the hall for some tests (blood, urine, chest x-ray). I was totally torn up knowing that I was in no condition to take Lucy to her treatment. Bruce left work early.
My mom and Bruce took her and they all did just fine. They came home with a funny story of a cowboy friend that they met in clinic. Bruce said that after this 5 or 6 year old little friend tamed all the wild hobby horses in the infusion room, he offered Bruce a cold beer. I hope that Lucy wasn’t taking notes! After dinner and bath, my mom ended up taking the girls (Julia and Lucy) home with her for a few nights. I missed them SO much, but was able to get a few nights of good solid rest and a lot of house work done while they were out. I am feeling much better now and none of my test results showed anything significant. My doctor thought that I may have had a virus that was hanging on. Thank God it stopped with me!
The day that I started to feel really ill, I was swamped with some sad news. I found out that a teacher who I worked with at Meadow Wood, Sarah Chidgey, was diagnosed with a soft tissue sarcoma (started on her arm) that spread through her body. She is being treated at MD Anderson and started chemotherapy last week.
I only worked at Meadow Wood for one school year and part of that time I was on maternity leave with Julia. There was just not a lot of time to get to know people as well as I would have liked to. However, from the little time that I was able to spend with Sarah, I did learn that she is an outstanding teacher, totally passionate about her work, her students and colleagues. We did not get to talk daily and never really e-mailed personal messages, but on the day that I took Lucy for her MRI on her leg, Sarah sent me an e-mail saying that I was on her heart that day. She did not know that I had taken that afternoon off to take Lucy to the doctor. I e-mailed back a “Thanks! Have a great weekend.” and just thought that the gesture was a nice one. Little did I know that my world would completely change that afternoon when the doctor would call and tell me to drive back to the hospital. Lucy had cancer.
When I stopped by Meadow Wood to pick up some paperwork a few weeks after Lucy was diagnosed, I approached Sarah about the e-mail and asked why she had sent that? She replied that something told her to pray for Kelly on her way to work that day. Sarah has a gift in this special instinct and relationship she has with God. I know that it will be her strength as she battles this cancer beast. I know too that one can’t have enough prayers. She started a blog when she was first diagnosed and I am sure that she would love any support: http://www.sarahchidgey.blogspot.com/. She is a constant in our prayers.
Well, with Mom’s help, I began to feel like a new person after the weekend. Mom came and helped with the kids last week some too. Bruce was out of town and I was able to tackle some of the insurance, benefits, and bills issues. These things have somehow turned into a full time job.
Lucy had treatment again on Friday, August 20th. I was so glad to be able to take her again. Mom went with us and everything went smoothly. Jalane (PNP) explained to us that Lucy would only have blood work and a check up next week (Friday, August 27th). September 3rd she would start the second half of this round with a slew of new medicines (if her blood counts are back up). She will get another spinal tap and will get chemo through her port for four consecutive days. Lucy will get the first dose in clinic. Then, a nurse will come to our house to administer her chemo for the following three days. We will do this for two consecutive weeks. But then… But then… Maintenance. Ahhh Maintenance. Lucy’s appointments will be spaced out a bit more and she will eventually be able to return to school and the good ol’ outside world of family and friends!
So far, Lucy has had an incredible response to her treatments and guess what? She still has some hair too. It is pretty thin, but it is there. We were told that whatever was left would probably drift away during this phase, but those blond strands just do not want to go!
She has been sick for the few days following her treatment, but then tends to regain her energy. As the treatments progress, it is taking her longer to recover. She wants to swim and ride her bike but tires quickly. She will ask me to spin her fast on the tire swing outside and a few minutes later to hold her in her reclaimed spot on the couch.
We do see the effects of the steroids setting in. She has pretty dramatic mood swings from one extreme to the other in a matter of seconds. She is sometimes oversensitive to noise and other stimulation (a.k.a. her brother). The good news is that Bruce and I know to expect this and can stay calm and help her get through it or remove the stimulus J. Her diet has not been very consistent. I think that the steroids are making her feel hungry, but she still appears to be battling some nausea. She is eating though and with a little coaxing, her diet does have some variety, so I am not complaining. When she does eat, she typically goes for meats and dairy.
There is a website called Caring Bridge that is used by a lot of patients at TCH. The advantage of this site is that it will notify you via e-mail when an update has been posted. I have created a Caring Bridge page for Lucy and will sign in there whenever I update this site. So, if you are interested in being notified when an update to this site is posted, please log onto Lucy’s CaringBridge site and request to be notified of updates. (I hope that makes sense.)
Visit Lucille (Lucy)’s Caring Bridge website in two easy ways:
1. Visit the CaringBridge website by clicking the link below.
http://www.caringbridge.org/visit/lucillelorraine
2. Enter the website name, lucillelorraine, at www.CaringBridge.org.
When you visit you’ll be asked to log in, because I’ve chosen to keep the site private
Thank you for all of your thoughts, prayers and support. We are so blessed and could not have made it through this without you! Thanks!
July 18, 2010
I am sorry that I let so much time lapse between the last update and this one. The days are moving faster than I can keep up with. I guess that is a good thing right now as I am anxiously awaiting reaching the “maintenance” phase of her treatment in October. A lot happened in these first few weeks of July. Tommy, my younger brother, was able to record the radio interview that aired the morning of Sunday, June 27th. Love him! If you weren’t moving that early in the morning, you should be able to hear it by cutting and pasting this link: http://apps.facebook.com/divshare/?page=download&file=11828016-35b.The fundraiser hosted by IW Marks on July 1st was incredible! It was truly an unforgettable evening for us that made a HUGE impact on our lives. Bruce and I are astonished by the generosity of our family, friends, and community. I had no idea what to expect from the event. The kids and I prepared for it by doing what we do best - the kids painted posters and I made a big batch of Grandma Voss’ chocolate chip cookies. I was pretty nervous about the event on the days prior to it and having a batch of Grandma Voss’ cookies tucked under my arms always makes me feel more comfortable. It was raining cats and dogs outside that day but inside was certainly cozy! Neither Bruce, I, or Lucy had ever been to the IW Marks store. It was stunning! The displays and décor were beautiful, and we were immediately greeted by the Marks family. This was the first time that Bruce and I had met or spoke to Mr. and Mrs. Marks. It was so nice to be able to thank them in person. Lucy was at the end of one of her treatments. So feeling good, she wasted no time starting the party. Before our introductions were over, she was sporting more diamonds than a movie star on the red carpet! Jerry, a well dressed, soft spoken salesman at IW Marks asked Lucy if she would like to see anything in the cases. Oh Yea, would she! Lucy whipped her pointer finger out and directed him to some necklaces that I seriously have only seen in museums! Within minutes the kid was draped in diamonds and had a big fancy watch hanging off of her wrist. She strutted around in the jewels for a while, but in the end, she exchanged all of her treasures for a leather IW Marks watch that Brad Marks gave her and a bottle cap necklace that read “It’s all about me” from her Aunt Niki. So fitting, the evening really was all about her and she loved every minute of it! Two radio stations (106.9 The Point and 107.5 The Eagle) broadcasted live at the far end of the store and waiters walked around the displays with great appetizers from Del Friscos- Yummy! As our family and friends filed in, Bruce and I counted our blessings! We had so much fun and never guessed that something so wonderful could come out of something, well, not so wonderful. The knowledge that someday our family will give back, has made accepting all of this support a little less difficult. We look forward to days when we can be the helping hands for someone else. We are so, so, so very grateful to everyone who was there that night. Your support is our glue right now, and I think it is super glue, extra strength! Thank you! What an awesome night!
Lucy is doing great! She is like the Energizer bunny and just keeps moving past any barriers that she encounters. Her 4th of July weekend was definitely filled with fun! The rain held off for Lake Conroe’s annual 4th of July parade. On the 3rd, we drove up to the lake for the day. The kids really enjoyed seeing the parade and getting a little swim time in before the thunder clouds rolled in. The next day, she and Ross decorated their bike and trailer and spun around our neighborhood park with their friends at the 4th of July social. Between the ice cream, fire truck tours, and swimming, their 4th of July cups were brimming! Lucy was fast asleep when the Houston firework show was going on that night. Ross and I rode the bike down the bayou to catch a glimpse. After the 4th, our days have been filled with taking Ross to tennis and spending time at our neighbor’s (Mr. and Mrs. Brodie’s) pool. We all really enjoy swimming together. Lucy has become quite the little mermaid. She tells me to scoot back… farther… one, two, three, four, ready, set, go… and with her goggles squeezed onto her face, she dives under. She wiggles her body, paddles her arms and kicks super fast until she reaches me completely out of breath. I laugh every time! Lucy pretty much does this from the time we get there until it is time to go. She just wears herself out. So cute! Ross is becoming more independent each day. We are still going to tennis lessons every day and he is improving. He can now drop the ball and hit it, and sometimes he can hit a ball back to you. Last week at lessons, he found a few baby frogs on the court. He scooped them up and walked them over to Lucy and me, let them go in the grass and went back to playing. I almost had a heart attack! I could not believe that Ross left the frogs to go back to his lesson by himself (without me hollering- “get back out there!”). The second week in July, he had the opportunity to go to ABC Camp from 9 am - 1 pm at my old school, Regis. He loved it and I felt so lucky that he had an opportunity to get a little taste of the pre-k teachers there. Mrs. Peterson and Mrs. Russell are the best! Julia is now crawling all over the house and will try to eat anything that she can catch. She absolutely LOVES being in her brother or sister’s rooms! When she in not playing (a.k.a.- drooling on all their toys) in their room, she spends most of her time finding me and sitting by my feet blowing raspberries. Oh, I don’t know how I forgot how much I love this age! We are starting to see a clear pattern in Lucy’s post treatment behaviors. She has been a little sick and tired for a few days following treatments, but then regains her energy. She rarely says no to participate in anything, so I have to remind myself not to run her ragged. I can usually gauge things by her appetite. She eats very little for the days following her treatment. But, just as I start to become worried, she turns a corner and becomes my hungry little girl again. She has definitely lost all of that steroid weight and then some. Her appearance seems to change daily. The amount of medicine (chemo) that she is getting has increased with each visit this round. That is good as each dosage is dependent on her blood counts. So far she has not had any setbacks and her counts have been high enough to accept more medicine each time. I have mixed feelings about this. I am so glad that she is able to dish out what they are giving her and her counts are staying up, however, I hate the thought of more chemo. As the dosage has gradually increased, we are noticing more side effects. She is frequently nauseous and has achy joints. She complains of her neck, hips and legs hurting. I imagine that it feels like arthritis. When we give her medicine to counter these symptoms, it doesn’t always stay down due to nausea and an empty tummy. Rub downs seem to help a little. The good news is we are almost finished with this round. She has one more treatment scheduled for Thursday (July 22) and then she gets an almost two week break. Woooh Hoo! Additionally, we got the okay from the nurse practitioner, Jalane, to take a short trip to Tulsa to visit GG and PaPa (Bruce’s mom and dad). I am going to take the kids to Dallas right after Lucy’s appointment. We are planning on spending the night there with Bruce and then heading on to Tulsa for the weekend together. We are all looking forward to a little get-away and some time with GG and Papa.
After her appointment on July 22, she will begin her 4th round of treatment called Delayed Intensification. (Personally, I don’t like that name very much.) The “Intensification” part of it means that she will get heavy doses of chemo drugs. Some of them she has already been introduced to, but some of the medicines in this round will be new for her. She will also have to go back on steroids. YITES!!! It will also be heavier doses then she had in the first Induction round, but she will be cycled on and off of them.
I am really going to try to enjoy our brief break from medicines and not think too much about this challenging upcoming time. I know that she will get through this and it will only be a matter of time before she is in Maintenance phase. Most days just zip right by for me, so I am sure that October will be here before we can blink.
June 25, 2010
Lucy received her second, increased dose of chemotherapy on Monday. She is handling the medications fairly well. Her energy level surprises me. She can still make it around the block on her bike and has even attempted tennis lessons in the mornings with her brother. The City of Houston offers FREE lessons in various neighborhood parks for eight weeks in the summer. So, as long as Lucy can take being outside for a while, we are in! Can’t beat that great way to wear them out! She does run out of gas a little earlier then she did a few weeks ago. She is not eating very much at all, and I attribute her lack of gusto to that. She will eat a little bit of yogurt or drink some milk but does not want too much else. If things don’t improve, I am going to try some high calorie protein shakes this weekend. Hum… I never envisioned saying that a few months ago when I thought that I would have to buy a lock for our fridge!
A lot has happened over the last few weeks. Julia leaned to crawl, Ross learned to swim, and Lucy and I got to take a field trip to the radio station! The same marketing person (Tracey Cleckler) that organized the IW Marks auction event called us to ask if we would be interested in doing a radio interview to inform Houstonians about leukemia and Texas Children’s Hospital. Four different radio stations wanted to do an informative show on this topic. Between many e-mails and phone calls, we worked together to try to get a doctor to participate but were unsuccessful. A doctor could not commit on such short notice. The COX Station public affairs director, Mike Mollett, interviewed me and Bradley Marks, the owner and president of IW Marks on Wednesday. I brought Lucy with me, but they did not end up interviewing her. She had to wait in the lobby, but Tracey kept her occupied. The interview was really directed at talking about leukemia and promoting the auction on July 1st. It is scheduled to air on Sunday at 6am on 97.1 and 106.9 and then again at 6:30am on 93Q and 107.5. You would have to be up and going pretty darn early on a Sunday morning to catch it. Anyway, Bradley Marks was really a great guy and the visit to the radio station was unforgettable too. I seriously feel SOOOO blessed and am still in a bit of a state of shock!
Bruce and I are going to be at the auction on Thursday with Lucy. I think that it is going to be a lot of fun. We would love to see our friends and family there, if you can make it.
Love,
Kelly, Bruce, Ross, Lucy and Julia
June 17, 2010
Something wonderful…
Prior to the start of the Spring Show at Ross and Lucy’s Spring Branch pre-school, the school director announced that there was a bake sale in the hallway benefiting Lucy. Bruce and I were so incredibly touched by this and found out later that the teachers had contributed the baked goods. WOW! In the midst of everything else they had going on, we could not believe that they did this for us!
A few weeks after the Spring Show, we received a call from the marketing director of IW Marks explaining that the owners learned about Lucy at the show and wanted to help. She told me that they wanted to organize a silent auction benefiting Lucy. We are so amazed by the generosity!
Here is a copy of the advertisement from the IW Marks website. They also have information about the event on Facebook.
I cannot even begin to explain how grateful we are.
Love,
The Schuler Family
Silent Auction
I W Marks Jewelers Hosts Silent Auction Benefiting 3-year-old Diagnosed with Acute Lymphoblastic Leukemia
3841 Bellaire Blvd. (July 1st, 2010) – I W Marks Jewelers will host a live auction on Thursday, July 1st from 5pm-7pm at I W Marks; located at 3841 Bellaire Blvd. in Houston. While most families make summer plans and look forward to exciting trips, the Schuler family of Houston is anticipating a long road of a different sort. Lucy, their 3-year-old daughter will endure spinal taps, chemotherapy, and other treatments aimed at saving her life. The treatment process is costly and will last 2 ½ years. 100% of all donations and money from the auction will be given to Lucy’s family to directly assist with payment of costly Chemotherapy and additional treatments. During the auction KHPT-FM (106.9 The Point) and KGLK-FM (107.5 The Eagle) will broadcast live and invite listeners to participate in the auction. Appetizers and beverages will generously be provided by Del Frisco’s.
Here are a list of items of for auction:
Candle Warehouse Gift Basket
Lasik Eye Surgery from Berkley Eye Center (Value at $5,000)
Sam Houston Race Park Gift Certificate Including Dinner for 4 (Valued at $150)
(Set of TWO) Family 4-pack Astros Tickets- Doug Out Seats + Parking Pass (Valued at $500)
James Coney Island (5) $10 Gift Cards
El Tiempo Dinner (Valued at $100)
Gilbert & Sullivan 4 tickets to "Patience" + gift card (Valued at $194)
Two Houston Symphony Tickets/ Vouchers (Valued at $230)
Two Alley Theatre Tickets/ Vouchers + Dinner at Birraporetti's $50 Gift Card
Bread & Bagels for One Year from Panera Brad (Valued at $200 +)
Two Wing Parties at Hooters (Valued at $400 +)
Two Massage/ Spa Packages From Memorial Park Dental Spa (Valued at $375 each)
Foundation Room Membership through the House of Blues (Valued at $2,250)
The Schuler family has had a difficult time. Bruce Schuler, Lucy’s dad, was laid off for 14 months. Shortly after Bruce went back to work, the family started to notice changes in little Lucy. She was more lethargic and irritable. She complained of leg pain and developed a limp. On April 2nd of this year, Lucy was diagnosed with Acute Lymphoblastic Leukemia and admitted to Texas Children’s Hospital. (ALL) is a fast-growing cancer of the white blood cells. With proper treatment there is hope. Kelly, Lucy's mom, has taken a leave of absence to be with Lucy during her treatment. Kelly loves teaching but is unsure about when she will be able to return to work. Help us help Lucy so she can become the vibrant little girl she is meant to be. Join us at I W Marks on July 1st from 5pm-7pm and help us help Lucy so she too can enjoy future summers with her family.
June 12, 2010
To celebrate the first official Monday of summer in our house, Lucy and Ross begged us to have a slumber party Sunday night… with each other. They wanted to sleep together in the same room. Bruce and I have had a little experience with this cohabitation arrangement when we have traveled with the kids, and it’s never really worked out that well (for us). They talk, play, laugh, and get out of their beds to meet lots of bathroom and potty needs until the wee hours of the night. So with this in mind, I allowed them to have their slumber party with some restrictions. I would give them a few minutes to talk and then the room would turn into a “sleeping room.” Otherwise, it would be back to their own beds. Lucy asked if they might be able to have another slumber party at nap time the following day. I told her that I would see how the night arrangement worked out first. She assured me that she was going to do very well and, motivated to do it again, they actually did for the most part. During the night, I took advantage of Lucy’s room being empty and rearranged the furniture in there. I have high hopes of someday moving Julia’s crib into Lucy’s girl room and out of our bedroom. I pushed Lucy’s bed up against a wall and moved a dresser/cabinet piece next to it under the window.
At nap time on Monday when their slumber party was busted, I realized that she now had easy access to all of the little trinkets on her dresser/cabinet that I had pushed up next to her bed. When I peeked in on her at nap time, she was sitting up in bed holding a cross with Jesus that I intend to hang over her door. I told her to put it away and go to sleep. She responded by asking me “Why did those people dead Jesus? Why were they mean?” I told her that they thought he was bad. “How did he come back alive?” Oh, man, I thought to myself, “Take a nap and we will talk about it when you wake up.” “Will you show me a picture of Him on the cross?” Yes, I will. Now go to sleep. The rest of the day, Lucy was filled with questions about Jesus. “Why can’t we see Him? When we get to Heaven does He come out of our hearts so that we can see him?” Before bed that night, I read her some Bible verses in an effort to make the story a little more understandable. I explained that ordinary people that die don’t come back to life, only Jesus had this gift. “I don’t want to die.” Oh, I said, you won’t for a very, very, very long time. This last conversation with Lucy before bed brought a lot of peace to me. That Monday evening had been an eventful one and well, leave it to Lucy to remind me about what is truly import in life.
Over the weekend, Bruce had been experiencing some pains under his arm and across the front of his chest. He did not remember injuring himself, and the odd sensation was getting worse. Since he was scheduled to go out of town at the end of the week, he made an appointment with the doctor Monday afternoon. He called me at 4 pm to tell me that he had been diagnosed with shingles. Lucy’s nurse advised Bruce to keep the area covered well and avoid physical contact with Lucy. She also mentioned that shingles are typically pretty painful. Yikes! We have to be careful to limit this one to Daddy only! Bruce started himself on the recommended medicines right away. I, trying to live up Lucy’s feeling good moments, spent a good part of the day at a neighbor’s pool with the kids. At 5 pm we headed home for dinner. I started a load of wash and prepared dinner. After supper, Bruce noticed water pouring out of the bottom of our washing machine. Bruce worked with a neighbor on the sewage line outside to try to fix it while I bathed the kids. Ross was not acting himself and asked if he could go read books alone in his bed. When I went to check in on him a few minutes later, he had fallen asleep. Not normal. I grabbed the thermometer off the counter. 103.4! Oh no! I called the pediatrician on call and told her that Bruce had shingles and thought that Ross’ fever may be related. She did not have any answers for me that night but told me to bring him into the office in the morning. Did I think that she was going to call in some “get better quick” prescription so that we could get on with our very brief period of freedom from sickness? Yes. That is exactly what I wanted to happen. All I could think about is that he and Lucy had been slumber partying and playing together in close contact all night and afternoon.
Once we got the kids off to bed, Bruce said , “It looks like the wheels are coming off the bus.” Um, I thought that we had been driving without wheels for a while now. In fact, I am pretty sure that we lost the rims too and are in park hanging off a ledge! I need to keep my faith. With all of Lucy’s inquisitions earlier that day, she pointed out that this was not the case, if I had listened to her, I would know that we had been flying first class on a jet plane. Bruce and Jeff (our neighbor) fixed the plumbing problem. Bruce’s shingle issue will clear-up with time, and tomorrow, I will take Ross into the doctor to try to figure out what is going on with him. Niki, my sister, volunteered to stay with the girls. God is good.
Lucy’s counts were high at her previous checkup, and she has been feeling good. In an attempt to escape catching whatever Ross had during her brief chemo-free period, Niki offered to keep Lucy for a night. Lucy had so much fun that it turned into two nights. It was great for her to be able to dodge the sickies and have some fun. Aunt Niki spoiled her with lots of play time with her cousins, visits to the donut shop, nail salon, and Danielle’s dance recital. She came back one happy camper anxious to show off her freshly painted pink polka dot toenails and bubblegum flavored lip gloss! She was in heaven!
Before that crazy Monday, Bruce and I planned to take advantage of what we thought was going to be a break and get a babysitter one evening. We had planned a date night on Tuesday to a cooking class. We were both really excited about it. I was pretty sure that I was going to have to cancel our evening out after what Monday looked like, but since Niki took Lucy and Ross appeared to be feeling a little better, we reluctantly went for it. I was glad we did. I am not sure that I gained much knowledge about cooking, but the escape for a few hours was a good one for both of us. On Friday, Bruce and I took Lucy to her first day of this new phase of treatment. She was happy to go and see all of her hospital friends and show off her polka dot toes and bubble gum lip gloss. Her blood counts were great, and she once again assisted with all of her treatments. This time she got two types of chemo (methotrexate and vincristine) directly into her port. While she waited for the medicine to be made and for the infusion, she played memory with a handful of other kids in the waiting room and twirled around to the music played by friends from the Purple Music Can Fly radio team. She had requested a fast song. The appointment was over by noon. We stopped at a deli for lunch on the way home. We sat at a table with two older women. Lucy promptly asked them for their names and struck up a conversation with them. Betty shared with Lucy that she had 2 year old triplets in her family and told her that she was a twin. In fact, she said that she was born in 1915. The governor of Texas, recognizing her as the first set of twins born in Texas, sent her daddy 10 dollars towards her college education. Bruce quickly calculated and said “your 95!” I told Lucy that means that Betty is a VERY smart woman and has had a lot of birthdays! Lucy announced that she was going to have 96 birthdays. Sounds good to me! Before leaving, Betty pointed out her shinny red Cadillac THAT SHE DRIVES. Lucy jumped out of her seat, followed her to the door and waved to her as she pulled out in it. Betty gave her a honk, honk!
We have 9 days before Lucy’s next treatment. If her blood counts are good and she is tolerating the medication, the doses will increase each time.
Thanks for all your support. We are grateful!
May 28, 2010
Lucy is coming to the end of her consolidation phase. Overall, it has been a good month for her. She has responded well to the weekly spinal taps and the chemo medicine that we take at home. However, her diet has definitely taken a plunge. She takes her medicine in the afternoon and typically has an upset stomach for much of the evening and morning. She usually wants to eat but changes her mind when it is put in front of her. We offer her bland foods throughout the day in an effort to get her to eat little bits. Her blood counts have dropped steadily over the past two weeks, but her energy level has remained good. She loves to ride her bike (“really fast”) and is able to tolerate swinging, playing on the fort outside, and teasing Ross. We even ventured to Lake Conroe last weekend to visit some friends and Nana and Papa. She had so much fun swimming a few times too. We are enjoying every minute that she is feeling good. Generally, when we go for treatment she is initially seen on one floor (clinic) and then goes to another floor (PACU) for her spinal taps and/or bone marrow aspiration. Since she is only getting spinal taps this month and now has a port-a-cath, the nurses suggested that we try the spinal tap procedure in clinic under general anesthesia. This in-clinic method would potentially save us hours of waiting for an anesthesiologist and surgery on another floor. So, for the last two appointments the nurses accessed her port to take blood and start an IV as usual and then preformed the spinal tap procedure there. Before her first procedure a Child Life Specialist came in and asked Lucy if she could curl up like a kitty cat. Lucy told her that she did not want to right now and explained to the lady that she had never seen a cat all curled up…because they are usually running from her. The Child Life Specialist said that she did not have to curl up now but told her that she will have to for the spinal tap procedure. A little later, a pain medication and another medicine to make her drowsy and have a bit of amnesia were administered. Believe it or not, both times, Lucy helped the nurse push the “sleepy medications” into her line herself and then looked at me with glazed over eyes. The nurse curled her little body up into a ball and the spinal tap was performed while I read her a book or she watched a movie.
Both times she was very still and did great for the procedure but had a difficult time lying flat for thirty minutes afterwards. This wait period is ordered to prevent headaches. I can’t imagine how the medicine and the procedure make her feel. She looks lost and confused, and I think she wants to sit up to help her decipher her surroundings. After the first in clinic procedure when we were eating dinner at home Lucy said, “Her told me that I was going to have to curl up like a cat, but I didn’t. I guess my legs weren’t working or something.” I think that she knew that she had missed something but could not quite figure it out. Youth surely has its perks! I recognized some of the advantages of being young when we were leaving the clinic last week. I watched a few thin, bald teenagers in wheel chairs checking in. I can only imagine the challenges that those kids and their families must face!
Lucy is blessed to be three! First, there is the good response she has to the treatments. The doctors told us that this leukemia responds to therapy differently in older children; it is a different monster. Secondly, there is her innocence. If Julia is awake, Lucy is near. She loves her little baby sister so much. When I am holding Julia or nursing her, Lucy stands next to her head and talks and sings to her. Every once in a while, Julia will glance up and smile and touch Lucy’s face or hair. A few days ago, Julia reached out and touched Lucy’s bangs as she was leaning over her. Lucy was already singing a little lullaby to her, but added some new lyrics to the song… “It is ok if you pull my hair. It will fall out an-y-way. Then it will grow back when I am finished taking my med-i-cine. So it is oooo-kay!” I did not even know that she had given any thought to the hair issue. We had not talked about it since those first weeks of treatment. I suppose that she sees all of the other bald kids at clinic and keeps this thought in the back of her mind. She mentioned it again the day after our weekend at the lake. In the car she asked “Mom, is all my hair going to fall out?” “Yes”, I said, “but it will grow back.” “Then I will be bald like Ella’s daddy or like Jim, Ben’s Jim.” Funny, I had not even noticed that Jim was bald. “Then they can spend the night at our house and we can have a bumbo party! He, he, he!” What is a bumbo party anyway? She cracks herself up with these silly ideas. I am relieved to know that she has a positive outlook about the hair thing. Third is her lack of or slightly skewed memory. I have memory issues too but don’t really see it as a benefit. She asked me the other day when she could go back to that “pole doctor.” Pole doctor I thought… what pole doctor? The only pole associated with a doctor that I could think of was an IV pole. “Do you mean the hospital where all the kids had poles?” I asked her. “Yes, Mama. I liked that doctor. They didn’t give shots there.” “They didn’t?” I asked. Hum…. all of the Easter goodies and Mommy and Daddy attention must have skewed her memory. I am glad that SHE thought it was fun! Lots of advantages for sure! Today was her last spinal tap for a few weeks. They are giving her back a break! Additionally, she will stop taking her daily chemo pill on Sunday as we complete this consolidation phase of treatment. We are expecting to see her immunity counts bottom out again at the end of the week as a result of today’s treatment and the toll of the month’s. But, she is scheduled for a check-up (blood work, etc.) ONLY on Friday and will be virtually drug free (other than a few maintenance medicines) for a week. YA HOO! On Friday, June 11 she will begin the third phase of treatment, Interim Maintenance. This next phase last 57 days or until her blood count parameters are met. She will be receiving vincristine and methotrexate through her IV, and the methotrexate will be given in increased increments every ten days, if her counts are sufficient. She will get another spinal tap on the 31st day.
I am praying that her blood counts improve quickly and that we can enjoy a few days of good health before we start this next round.
We thank God every day for everyone's thoughts and prayers. Thank you!
05/12/2010
We have watched Lucy’s energy level improve daily since her port surgery and treatment last week. Her appearance has changed pretty dramatically (there is much more of her to love), but our little silly Lucy is back! She asked me to watch her yesterday as she quickly hobbled to the hallway wall and back to the kitchen. “Mom, I got my fast back!” she told me. I am glad that you think THAT was fast, I thought, but really glad that you are feeling good enough to walk around again. She can tolerate noises (aka, her brother) much better now. She and Ross are back playing together every minute that they are not yelling at each other. Since Lucy has now mastered the art of playing doctor, she spent the morning showing Ross how to draw blood and tape an IV onto her dolls. Then, she allowed him to practice on her. They had a whole clinic set up in our living room. Ross even examined the “blood products” under a microscope. Well, really it was a bug magnifier, but it worked. I am amazed by how observant Lucy is during her appointments. She recalls such details like the color of the equipment pieces that the nurses use or the names of all the staff and people we see in the waiting area. Like me, I think that she is also becoming more comfortable with the whole process.
Bruce and I met with Dr. Kamdar on Friday afternoon. She verified that Lucy falls into the standard risk low category. The cytogenetic results, the study that looks closely at the function and makeup of the leukemia cells, showed that Lucy’s leukemia is a special type that is more prone to be weakened by the chemo treatments. Additionally, because no leukemia was found in her CNS initially and zero blasts were discovered in her marrow at the end of the first month, she qualifies for this standard risk low category. Basically, she is allowed to move on with her therapy since her body is responding so well to the initial treatments.
Dr. Kamdar gave us the low down on the next 2 ½ or so years of treatments. The process is broken down into five phases called Induction, Consolidation, Interim Maintenance, Delayed Intensification, and finally Maintenance. We have completed our first phase, Induction, (whoo-hoo!) and are now in Consolidation. Each phase has varying amounts of clinic visits and medicines to be taken at home or at the hospital. Phases generally last one or two months until maintenance, which will be the longest phase of her treatment. She described the next five months as pretty intense and briefed us on the 11+ pages of drugs and side effects, each one appearing nastier then the one before it.
Dr. Kamdar also gave us the option to enroll Lucy in a “study group” or to withdraw. She explained that to remain part of this experimental group, Lucy may be given an additional four doses of PEG-Asparaginase during her upcoming months of treatment. This is a drug that she has already received and even under the standard protocol will receive once again. It is injected directly into her muscle via shots in her thighs and is known to cause allergic reactions. Patients are monitored closely after administration and the medicine is not given without the parents having an Epi-pen in hand. Since it is a “study”, Bruce and I had a hard time weighing the pros and cons of our decision. There is so much unknown, such as long-term side effects, short-term side effects, and the percentage that these additional medicines would keep her in remission. We decided to go with the standard treatment protocol. May be Lucy will thank us later for saving her from 8 more shots. We know that there is a high cure rate for ALL with the standard treatment regimen, and we are praying that this is what Lucy needs to keep the cancer away. Lucy had treatment on Monday. She got chemo via IV in her new port-a-cath and also received chemo by a spinal tap. This was the first day of port-a-cath access. The nurses applied a little numbing cream to the port spot before they accessed it and told me that it is often tender the first time. The nurse allowed Lucy to feel a little cold spray on her finger and offered that to her too. She took it. Wham! Bam! One lady sprayed and the other got her IV started. Lucy hardly flinched. She assisted the nurses in taking her blood by helping them connect the tubes and remove and shake them after they filled. The staff was shocked to see this in a “first timer”. I was proud of her and relieved. She is certainly getting the hang of our new routine. We moved on through the remainder of our appointments. She did not complain much about being hungry but was very uncomfortable when she woke up from her spinal tap. Some of the other people in the recovery room can verify this. After escaping that place, Mom, Lucy and I filled up on Star Pizza instead of Luby’s this time. She perked up after a little food and Nana company. Those clinic days are long ones for all of us!
During this Consolidation phase of treatment, Lucy will take a new chemo medicine at home daily and will continue to get the spinal taps in clinic for the next three weeks. The nurse practitioner told us that patients typically respond well to this phase of treatment. She said that while her blood counts may be low, they are not expected to bottom out this month. Lucy may even continue to have some energy to play. We are all enjoying that! With signs of new Lucy life, Bruce has to remind me not to overdo it with her. Since being outside is typically okay for her, we spent a lot of our weekend outdoors. She watched Ross’ t-ball game on Saturday and then went to a little festival held at our neighborhood park. We spent Sunday at Conroe with Nana, Papa, Aunt Niki, and cousins, Ben, Danielle and Nick and friends Hayden and Hyder. Watching her waddle along the pool side laughing brought the biggest smile to my face! It was a good Mother’s Day spent with my mom and seeing our kids so happy! Stay tuned for pics!
Thanks for all of your care and support!
Kelly and Bruce
05/06/2010
Yea! We made it through our first month of treatment! Lucy’s procedures went well last week. She had surgery on Thursday and now has a port-a-cath high on the left side of her chest. Aside from keeping the nurses from digging for veins in her arms, hands and feet, her new semi-permanent access point will allow the medicines to be distributed throughout the body faster. Her port is placed in a vein with direct access to her heart. We had an opportunity to experience how her new piece of equipment worked on Friday. A needle was left in the port after her surgery on Thursday. The nurses used that needle to draw blood, receive a blood transfusion (because her platelet counts were too low to do the bone marrow aspiration and spinal tap), and deliver her medicines before her bone marrow and spinal tap procedures. Bruce and I took her to the hospital on Thursday, and my sister, Niki, went with us on Friday. I was really worried about the toll the two days of surgery would take on her. The doctor ordered her not to eat anything after midnight before her surgeries. Funny thing but I worried as much about her fasting in preparation for the surgeries as I did about the actual surgery. Her appetite is pretty intense these days and food is a big focus for her. I was anticipating a very hungry Lucy! I did everything I could in the days prior to our appointments to get the two days of procedures scheduled together. Since I was unsuccessful, I just decided to deal with the situation the best I can. Lucy is waking up frequently through the night (5-6 times). She is usually very sweaty and asks to go to the restroom. So, when Lucy woke up at 11:40pm to go to the bathroom, I asked if she would like a “snack”. Why YES Mama! She feasted on leftover pizza, yogurt, and fruit until she was full and happy. I explained to her that she could ONLY get a special midnight snack on doctor days. She went back to bed full and happy. I repeated our new ritual the next night too. She was hungry and irritable during the surgery days, but I am crediting her midnight snack for buying us a little more time. Thursday, the first day of surgery, they gassed her with a bubble gum smelling sleeping gas. Texas Children’s goes all out - she was allowed to select her smelly flavor prior to the procedure. Really- a lady came in with a tray full of smells. Since they did not have “pot roast” or “pepperoni pizza”, she settled for bubble gum.
The anesthesia certainly made the appointment a lot easier than I anticipated. She was sound asleep to the sweet smell of bubble gum before they even started the IV or put her port in. She woke up hungry and quickly talked Bruce and I into taking her to the nearby (thank God) Luby’s. She intently devoured a serving of fish and mac and cheese and a few other snacks that I had brought along. The next day Niki met us at our house at 6:30am for her 7am appointment. This day was full of various procedures and a lot of waiting. I was so glad to have Aunt Niki along. She certainly kept Lucy occupied, and we both did our best to keep her mind off of her discomfort. We made it through the day and hit Luby’s again!
Nothing really magical happened at the end of the first month, but I did notice some gradual changes. I am defiantly more comfortable with the regular clinic/treatment visits. We have become well acquainted with the nurses, doctors, and other staff at the hospital. We even made friends with some of the regulars in the “infusion room”. My new comfort level was brought to attention when Lucy pointed out a new family snuggled up in one of the blankets that Spring Branch Girl Scout troop 18024 sent along with us to donate. The blankets were distributed by the social worker there. I know the blanket made this family feel a little better, but they looked scared, tired, and very uncomfortable. Bruce asked me if I talked to them, but I didn’t. If they felt anything like I did, no words really seemed to comfort me at that point in time. I just did not want to be there! I still don’t, but I guess I now accept the circumstances and appreciate what we have.
Since Lucy’s port surgery and treatments, she had a rough weekend, but we have seen her health improve daily. She does not have another treatment scheduled until Monday morning. This is her longest break so far. She was able to stop taking the steroids on Saturday, and I think that this really contributed to the changes. Every day she is acting more like herself. She is talking more, whining less, and able to get around better too. Yesterday, Lucy was so different. I almost forgot what she is really like. She was being silly and went outside to play with bubba by herself. When we got home I came in and said "I think bubba is waiting for you Lucy". She hopped right up and yelled "I'm comin’ Bubba!" I could not believe it! They played outside with magic sand and bugs that they found until dinner time. She gave Bruce a big hug when he got home from work. Bruce just looked at me in disbelief with tears in his eyes and a big smile on his face. Later, Ross and Lucy played robot. Ross was the robot, and Lucy programmed him (pushed buttons on his nipples and back). He ran crazy around the house, and she thought that was awesome! She was laughing between bites when she was finishing her dinner. Bruce and I missed her so much over the past weeks! Glad our little girl is back!
The Gulf Coast Blood drives were a HUGE success! Bruce and my parents were able to attend the drive at Wildcat Way (Lucy had a treatment that day), and my mom and I came to the drive at my sister’s school. I could not believe the turnout! We are so appreciative of the support from everyone! Bianca and Niki, thank you so much for organizing these. What an incredible effort! We are also thankful for the administrators and supervisors, Robye, Stacey, Niki, and all the other awesome bosses, who allowed everyone to come. Thank you so much to all of you who donated or tried to donate. Lucy and a lot of other people needing transfusions are sincerely grateful! I told her that you “took a poke for her”. She asked if you all were brave. “Very,” I said. I hope you were and that it wasn’t too bad. Thanks for all of your time and efforts. We were blessed yet again on Wednesday! Bruce and I have an appointment to meet with Lucy’s team of doctors on Friday afternoon. They are going to discuss the results of her last (day 28) bone marrow aspiration (taken last Friday) and her “road map” of treatment for the next 2 1/2 years. I have had quite a bit of anxiety over this visit. Yesterday, as I was getting ready to go to the blood drive, Ms. Theis, the nurse practitioner, called to tell us that Lucy had 0% blast cells found in her bone marrow and is now considered to be IN REMISSION. I was speechless! She did say that the MRD (minimal residual disease) results were not in yet. Still, I set the phone down and cried. Lucy just stared at me as to ask “well, what did she say?” I told her that the bad leukemia is gone. They got it! She just stared at me. Then why are you crying? I told her it is ok, Mama is just really happy, really, really happy! I shared this news with my family and met my mom and sister for a quick lunch before the blood drive. Just as we were packing up to head out, my cell phone rang. It was Texas Children’s again. I took a quick breath and answered. Lucy has low minimal residual disease (MRD) too! She qualifies for a “low risk” category. Her body is responding really well to the chemo treatments. Say it again, say it again! I could not believe it! Thank you God!
Lucy’s treatment will not stop at this point. Historically, when treatment was stopped here with other patients, the Leukemia always returned. So, the plan now is to continue treatments, which we will learn more about on Friday. We can do it!
Love and thanks to you all!-Kelly and Bruce
04/28/10
Lucy had a great birthday. Thanks for all the "Happy Birthdays" in the guestbook. I think she thoroughly enjoyed the “follow the Lucy” day. We picked berries at the bayou, opened presents, played “vet”, decorated cupcakes, and put lots of make-up on Bubba. Best of all she got to select breakfast, lunch and dinner that day. Bruce and I laughed at how proud she looked as she sang “happy birthday” with us and blew out her candles. I always joke with her that I don’t want her to have anymore birthdays. I want her to stay little. She told me before she went to bed that she didn’t want to be four. I told her not to worry. She is going to be three for a very long time.
Life, I know, is totally orchestrated by God. I left Lucy’s appointment last week feeling very depressed. I worried a lot about our upcoming port surgery and treatment procedures. I had encountered a few negative leukemia stories and for the first time since our ALL diagnosis, I felt very scared. I know that every case is very different, but I allowed myself to think of the “what if’s”. One story hit when Mom, Lucy and I came in for her treatment last week. I met parents who were rewarding the hospital with grant money that they raised in memory of their son who died of ALL two years earlier. It was his birthday, and his parents had decided to celebrate in this way each year. Lucy’s birthday was the next day. The second story came when a real estate agent came walking out of our neighbor’s house and told me about another neighbor whose son was diagnosed with leukemia. He told me what house they lived in, and I knocked on their door that afternoon. Although they were not home, I had the opportunity to meet them the next day when Lucy, Julia and I were out walking. Niki and her 6 year old son, Ryan, were out playing catch in the street. I introduced myself, and Niki told me that Ryan had been treated for two years and relapsed in January. Boy, I thought, why did I knock? She had been through many of the same experiences and knew the doctors and nursing staff at Texas Children’s well. She spoke with confidence and the cancer lingo was her first language. I listened and reminded myself that Lucy is different. I was disappointed when I walked away; not because I met them, but because the idea of relapse had not even crossed my mind. I try my best to take one day at a time, think positive, and enjoy every moment. Since Lucy’s counts were higher, she seemed to have a little more energy this week. I took advantage of this yesterday and took her up to Lake Conroe to visit Nana and Papa. They were so glad to see her and Lucy was so glad to see all of their good snacks! Papa took her on a boat ride to the McDonald’s on the lake. She drove all the way there and slept (at the wheel) on the way back. Although Lucy was not very talkative, I really think she enjoyed getting out of the house as much as Julia and I did. We all always love spending time with Nana and Papa.
After a great day at the lake together, my spirits were lifted for sure. Today (between snacks) we took a long walk, planted some plants, colored, read books, and even watched Ross’ t-ball game. I decided that this whole deal is in God’s hands, and I am just going to enjoy and appreciate what we have. I sat down tonight to write a little about our trip to the lake and her birthday when I saw headlights in our driveway. I walked out the front door to see a woman and a little boy get out of the car. It was Niki, my neighbor, and her son Ryan. She asked if she could come in for a minute. Of course. She held up a pink book bag with Lucy’s name on the top of it. She told me that she knew that Lucy had some big appointments tomorrow and Friday and that she wanted us to have this before then. She opened the bag to show me all of the things that she found to be essential in her new life. She had constructed a hospital binder for us, bought a night and day pill box, thermometer, numbing cream and special cream bandages, face masks and even a mini screwdriver (for the many times that she had needed one to open toys to change batteries in the hospital). She explained how and when she used everything. She added how fortunate she felt that Ryan’s relapse was caught so early with new machinery that was unavailable just two years ago. He is able to undergo more chemo treatments as opposed to a bone marrow transplant to recover. It almost felt like she had been waiting for us. I feel so blessed to have met them. I know that we are in Good Hands. Lucy quote on Sunday morning, the day AFTER her birthday with big tears running down her now very puffy cheeks: “Mama, Bubba said it wasn’t my birthday anymore!” Honestly, I think that she was mostly disappointed because she knew that we were not going to let her select all of our meals again. J She cheered right up when she found out that there were leftovers from her birthday. I do love her!
Thanks for keeping us in your prayers.
04/24/10
Lucy quote: “Mom, when I get better can we go to Luby’s? They have great macaroni and cheese and fish!”We had another clinic visit yesterday. Mom (Nana) went with us again. Lucy was only scheduled for blood work, chemo, and a visit from the doctor. She did not have to do a spinal tap or bone marrow aspirate, so she was allowed to eat. J Although I thought it was going to be an “easy” visit, I was proven wrong. Hum… I don’t know if there is an “easy” treatment day. Lucy’s week between treatments has been a tough one. I have spent my days trying to find a balance between satisfying her needs and not creating a totally needy child in the future. She is exhibiting more side effects of the chemo. When she is not eating at the kitchen table, she wants to spend her time nestled up in the corner of the couch with her blankie. Her appetite has continued to increase, so she is at the kitchen table A LOT. Since she generally eats the entire day, she now refers to every meal as a “snack” and makes every snack a meal. She still prefers meats and cheese, but I can usually bribe her to eat a few bites of the green things on her plate too. Her nights are restless as she wakes several times asking to go to the restroom and to tell me that she is hungry and really wants a snack. (I am pretty sure that is due to the steroids, not genetics.) During the day, she prefers not to participate in activities when I ask or offer, but she does get involved and perk up a bit if I just pull her into it or bring it to her. She likes sitting in the kitchen to help me cook or do dishes, feeding Julia, reading books, coloring, and games. She does not like much stimulation and prefers no music or TV. Our house has been pretty quiet during the day and too much stimulation is only a problem when Ross arrives home. His middle name is STIMULATION! Although he drives her crazy, Lucy loves being around him and exerts any energy she has playing with or correcting him (“Bubba, sit in your seat!”).
In addition to being pretty lethargic, Lucy has also developed neuropathy as a result of her chemo. She is having difficulty walking and her left foot is beginning to turn inward. The nurse practitioner made us an appointment with a physical therapist to take a closer look at this. She said that this is a symptom that may go away on its own or may need some PT help to recover. On Wednesday, Lucy complained that the catheter spot on her hand was hurting. The next day I noticed some bruising in the area and attributed it to her low blood counts. I worried about possible infection but knew that the doctor would see it on Friday. The mark, now covering a good part of the back of her hand is thought to be a chemical burn from the vincristine she received through the vein in her hand at her last appointment. I was told that these burns can take a few days to show up. These chemicals are designed to kill cancer cells, and when they leak out of a vein they kill everything they touch. The nurses go to great lengths to make sure that they get good blood return at any entry point where this medicine is being administered and that the administration point (IV) is not near a joint or bone. I am not sure how this happened, but we worry about any further damage that might happen with yesterday’s dose.
This “not so easy” appointment was primarily due to very tired veins and an out of commission hand. After one nurse dug around in a few spots, back-up reinforcements were called. A place was finally found to draw some blood, and two other options were marked as possibilities for the vincristine. The nurse applied some numbing lotion to these areas while we were sent to another room to meet with the nurse practitioner. Since we typically have some down time between procedures, I thought it was safe to run down for some lunch. (Lucy had eaten all the snacks that I packed before we even made it to the hospital.) I came back with some Chick-fil-A from the third floor dining area. Nana, Lucy and I spread our feast on the exam table. Of course there was no waiting this time, just a few bites into our meal the nurse practitioner, Ms. Theis, walked in. She declined our lunch invite, so I moved Louie down to the cleaner end of the table for her exam.
Ms. Theis decided that due to Lucy’s worn out veins she should have a port put in before her next treatment. I was told to call surgery next Wednesday to schedule a time for her port operation on Thursday. A port is a subcutaneous catheter that will be put in her chest to give the doctors and nurses direct access to her veins without having to start an IV each time. The port should prevent pain and fear of being stuck each time and eliminate leakage into tissues around the IV site. I was told that accessing the port in the days preceding the surgery can be extremely painful. Therefore, they are going to put a needle in at surgery and leave it in for her treatment the following day, which is next Friday. I know that these are all steps to recovery and that they will truly benefit her in the long haul of this battle, but I am totally dreading it! The idea of Lucy being any more uncomfortable than she already is AND the idea of her having to fast while on steroids to prepare for surgeries two days in a row makes me sick! At the end of the appointment, a nurse took us to another room where she chose one of the pre-numbed spots to administer the vincristine. Luckily, she struck gold… or red, we had blood return. The vincristine was administered, and we headed for home.
Lucy is three years old today. Happy Birthday! We made cupcakes yesterday - chocolate with chocolate icing - her choice. Yesterday I asked her if she wanted to bring one to the doctor. She wanted to bring all of them. She LOVES to give things out, and I think the doctors and nurses liked it too. I was hoping that they would somehow not make it hurt as badly if they had some sweets. J We made some more vanilla ones when we got home. Bruce and I decided that we will make her birthday all about her. Mommy, Daddy, Ross, and Julia will do and play whatever the birthday girl wants. So far, she has requested hide and seek. She told me that she will have prizes for everyone and that she will be in charge of blowing out her candles. It will be macaroni and cheese and hotdogs for dinner (but then she also added fish, tacos, hamburgers, cheese sticks…). Oh, I so love her! Today will be fun! Her neutrophil counts are higher this week, so it is safe to venture out with caution.
Thanks for being there for us!
04/23/10
Blood Drive Information
Many have asked how they can help. Leukemia and other oncology patients need transfusions of blood and platelets during their treatment so giving blood is one way to help. We are so fortunate to have such a great support network, and two schools are hosting Gulf Coast Regional Blood Center blood drives for Lucy and others in need.
The first is Friday, April 30th from 11 am to 5 pm at Wildcat Way Campus in Spring Branch ISD (12750 Kimberly Lane, Houston, 77024). This is where Lucy was in daycare before summer started early. Thanks to Ms. Mela, Ms. Tracie, Ms. Yessenia, Ms. Lyndsei, Nurse Ellen, and all her classmates for the well wishes, pictures, and love being sent our way.
The second blood drive is Wednesday, May 5th from 12 pm to 6 pm at Katy's Early Childhood Enrichment Center (25403 Kingsland Blvd, Katy, 77494). Kelly’s sister, Niki, owns this great daycare and has been there to help us from day one. Thank you Niki.
One of us will do our best to be at each drive for as long as we can. Thanks again!
04/15/10
I will never underestimate the power of what a child can teach me. After a day of what I would classify as pure Hell, I strolled Lucy (her ham sandwich), Julia and our dog Gus around the neighborhood to get some fresh air. After a few quiet blocks, Lucy said to me “I am mad at shots, but they make me feel better.” What intuition!
My mom (Nana) came over at 6:20am this morning to go with us to this week’s clinic appointment. I was anticipating a rough day since 4:30am when Lucy got up for the third time to “go to the bathroom” and tell me that she was hungry. When I reminded her that she was not allowed to eat until after her doctor appointment she cried… loudly! Then, Baby Julia woke up to tell me that she was hungry too. I was certainly anticipating a difficult day ahead. Fortunately, when she woke up, Lucy was thrilled to see her Nana and was happy to have her join us for her doctor visit. She really perked up when I told her that Nana brought us beef stroganoff and a meatloaf (for the freezer). She has a one tracked mind these days (thanks to the steroids) and it is all about food. So, from the minute she woke up, she was discussing her post visit order- “sandwich, cheese stick, meatloaf, chicken nuggets, hamburger, fries, apples, and milk from Mc Donald’s ...” I am not kidding!
Despite my predictions, she held up fairly well. She did frequently complain of hunger during the long hours of waiting, and she did cry and fuss when she got her IV catheter started and blood drawn. But, she made it through it all. Despite her fussing and whining she still took her deep breathes for the stethoscope, opened her mouth for lights, and held her arms out for the blood pressure cuffs and the sticks and pricks of the needles. Unfortunately, she had a few more then what is normally necessary. When the nurse announced that she could not get the blood to draw back from her IV, I knew we were in for another poke. The kind of chemo she has to get requires a vein with blood feedback. Man! The nurse instructed us to head downstairs to have her bone marrow procedure done and then to come back up to get the chemo. Since an anesthetic was used to put her to sleep during the procedure she was unable to eat until we completed the bone marrow part. I figured things may go a bit smoother once we got some food in her, so it sounded like a swell idea. As soon as she went into the doctor’s care for the procedure, I headed for the Mc Donald’s across the street to fulfill part of her massive order. It was raining! I came back a little wet with a fist full of Mc Donald’s bags to find Nana with her in the recovery room. Lucy was still sleeping soundly. About fifteen minutes later, I was wishing that she would have stayed that way for a little longer. The recovery nurse reminded us of what the doctor told us earlier that morning- the anesthetic and/or the steroids could have multiple effects ranging from severe headaches to vicious random tantrums (“alien child”). (Hum- you mean to tell me that I can blame those on steroids now?) Nana and I saw one of those. May be not vicious, but she was pretty mad when she woke up.
Between the crying and complaining, we made it out to a little family waiting room and she somehow scarfed down a good part of her “buffet” lunch. By the time we made it back downstairs to schedule the next four appointments and get the final chemo via “butterfly IV” we were all ready to have random tantrums! Lucy took the chemo like a champ and we hurried down to the car and raced home to make it back to that favorite spot on the couch. Nana cozied up next to her, and Lucy told her all about her upcoming meal requests and about her cooking talents. She is a great pizza and cookie maker! She asked Nana if she thought the beef stroganoff would taste good mixed WITH the meatloaf. I told her from the kitchen that the meatloaf was in the freezer. Nana and I saw another steroid side effect. The tantrum stopped when she remembered that there was some leftover fish. Ok- we will have meatloaf tomorrow.
Most important information: As we were entering our neighborhood after the long clinic visit, the nurse practitioner called with the test results from today’s procedure and the bone marrow lab results from our initial diagnosis visit. Wonderful news! The aim of this first induction phase is to rapidly kill most mutated cells and get Lucy into remission. This is defined as the presence of less than 5% leukemic blasts in the bone marrow. Lucy qualified. Additionally, the nurse said that although the complete lab results were not in, it appeared that Lucy’s leukemia might fall into a lower risk category. She said that we would have more news about this after her next bone marrow procedure on the 30th. THANK YOU, THANK YOU, THANK YOU GOD!
So, when Lucy said, “I am mad at shots, but they make me feel better.” I knew that she was right! They are working! Our next week will be spent at home. Dr. said that we are "grounded" for the week. Her neutrophil count is at 320. Generally, anything below 1,000 is a red flag- very prone to infections. We marked another treatment off the calendar! Thanks again for helping through the week!
-Kelly and Bruce
04/14/10
Our days at home have been uneventful and manageable so far. Ross is still going to daycare and GG Emma who babysat Baby Julia at our house has been here to help. Between Julia’s feedings, Lucy and I have had lots of togetherness. I feel so lucky for that!
A good part of her day is spent curled up on a favorite spot she claimed on one end of the couch. We have read tons of books, played memory a few times (she cheats), and played a few kid’s games on the computer there. When we tire of those things, I can usually talk her into a walk. I push her in the stroller all around the neighborhood and even got her to ride in the bike seat once. She seems to really enjoy strolling and talking. She has also kept busy taking care of her baby sister. Julia recently started eating solids. Lucy helps me prepare her food and feed her. I love to see this! Lucy says “Now JuJu- don’t pit it out sweetie! Good girl!” She is such a good little mommy!
I think that the high volume of steroids must have triggered her appetite because she has started to think just like me. While she is still eating one meal, she is planning her next one! On Sunday around 3:30 pm, she followed Bruce around letting him know that there was macaroni and cheese in the pantry. I am thrilled that she is eating or even thinking about food, so I have been making every attempt to fulfill her request- ham, pizza, cheese, meatballs, fish, pepperoni, more ham, more cheese… I try to sneak in a few fruits and veggies each time, but her focus is clearly on meat and cheese. It must sound better then it all tastes because she usually only takes a few bites and then is ready to rest again. However, she will still tell you what she would really like to eat next.
In the midst of a big hug, Julia grabbed a handful of her sister’s hair on Sunday. One slight tug and Julia’s tiny hand was full of a large clump of blonde hair. I was a little shocked. I think that a little piece of my heart came out too. Lucy did not even know it happened. I know that hair loss is going to be part of the process; I just was not sure when or how it happens. A grandmother who I met in the hospital suggested to me that I cut it short to make the transition a little easier and attractive. I don’t think the transition is going to be a difficult one for Lucy. Another advantage of being only two years! She was never really a huge fan of bows and ribbons anyway.
Our next clinic appointment is on Thursday. This is pretty much a whole day event as she will be getting the same workup she got on Friday. I haven’t talked about it much. I am just trying to enjoy the days without doctors. When we were in the hospital, an experienced nurse told me “just get through the first 28 days”. I was not sure what that meant until we were given a calendar of the first 28 days of treatment called the induction phase. I suppose it takes about that long to adjust to the new routines in your life. Lucy takes her medicines, and we mark the days off. Day 12- finished. We are nearly half way through this phase already. We look forward to the bone marrow results, in spite of the process, and hope for a big reduction in Leukemia cells.
Thanks again for all of your prayers!
April 10, 2010
Yesterday was our first visit to “clinic”. We got a taste of what will soon become our new normal. Bruce, Lucy, Ross and I checked in and waited in the seats not far from the entrance. We all had empty stomachs. We were told not to give Lucy anything to eat or drink past midnight. I did not want anyone to eat in front of her, so we slipped Ross a few snacks. I told Bruce that he could grab some breakfast with Ross after we got Lucy checked in. A Child Life Specialist came out and introduced herself to us. I had made an appointment with her to meet with Ross. She and Ross sat together at a small table and used a box of Spiderman colors, paper, and a fabric bone stuffed with different colored cells to explain what was happening to his sister. He appeared interested and kept reaching in the stuffed bone to pull out more cells. Shortly after his leukemia lesson, we were called back to have the catheter put in.
Since Lucy knew what to expect this time, she was not quite as cooperative. Additionally, most of her veins were used during our hospital stay a few days ago. The Child Life Specialist came in to help Lucy through the process. She and Ross tried to distract her with a cool little oil drip toy. The nurses started her IV, took some blood and led us to another room to meet our doctor. Dr. Kamdar was very nice and made us all feel comfortable. She explained that a team of doctors would be working with Lucy, but that she would be our main go to person.
After meeting our doctor, Bruce walked Ross downstairs to spend the rest of his day with Heather and Bea while Lucy and I were lead into the infusion room where children receive IV medicines. Many of the kids already being infused were engaged in game boys, cartoons on television, or other toys. Lucy sat in my lap and scanned the room. We saw a few children that we recognized from our stay in the hospital. After about 20 minutes, a musician entered with a guitar playing upbeat reggae sounding music. I swayed her back and forth in my lap, but she had no interest. She told me that she wanted him to stop. At that point a nurse and a social worker had come to talk to Bruce and me. Lucy, with an empty stomach and aggravated by all the activity, had enough. She had a major melt down. I excused us from the waiting room and pushed her in the stroller into a hall way. We walked up and down the halls looking at the children’s art work crying. I wanted to push the elevator button going down and run away from there. I know that she did too. I finally stopped in front of the window and knelt down in front of her. I told her that I know that she did not like the music and that next time she just needs to ask me for a break. I told her that it is hard to go to the doctor a lot of times, but we are going to do it to make her better. I told her that she only has two more things to do - her chemo and her sleep medicine. She said “o ta”. We strolled back in, she got her chemo, and we went down to another floor for her bone marrow and spinal tap procedure. She complained a few times of hunger, so I made a Mc Donald’s promise and let her hold onto a Mc Donald’s gift card that I had in my purse. Thanks Mr. and Mrs. Yates! All went well with the rest of the appointment and as soon as she woke up we hit the Micky D’s in the hospital across the street. All the steroids must be kicking in…the girl ate a ton. We had to run back in and buy more chicken nuggets. The always thoughtful Lu even said that Bubba could have her dragon kid’s meal toy.
Last night, when we got home, Ross gave Lucy a leukemia lesson. He drew a vein and lots of little cells and told her about the good ones and bad ones. Although he called it eczema, I think she learned a little. As he settled himself under the covers when Bruce and I tucked him in, he asked us to tell him more about Lucy’s sickness. I explained a little more and then he looked at Bruce and said “OK Dad, now your turn…” He is really trying to figure out what is going on… so are we.
Thanks for hanging in there with us.
04/08/10
We are nervous about Lucy’s first outpatient chemo treatment. At the same time, we are anxious to meet our doctor, Dr. Kamdar, who will be overseeing our treatments and clinic visits.
We enjoy reading the comments left for Lucy on her Guestbook. She likes hearing them too! The amount of support, caring and, love that exists for Lucy and our family gives us strength, and we are grateful.
Many have expressed an interest in preparing meals for us. We know that it would be a great help, but our doctor’s issued a word of caution regarding the practice and eating out too. Lucy’s severely compromised immunity will make her vulnerable to any type of food born bacteria or contamination. We both love to cook and certainly know how much of a sign of caring it shows, but we would hate to not fully utilize such a gracious sign of your love for us. Any other time, we would be all over it. We are afraid of everything right now and may need your help with meals in the future. Right now, instead of preparing something or take-out from a restaurant, we would prefer some time to get more feedback from our outpatient doctor or a gift card to Central Market or other major grocery store.
Lucy was so excited to see her Bubba when he came home tonight. They really missed each other and jumped right back into their silly playful routine - digging in the garden and climbing on the fort together. They filled each other in on the highlights of their time away from each other. Ross taught Lucy the Spiderman and Wolverine hand signs that he learned at Nana and Papa's, and Lucy told him that she learned how to eat pills. Both were impressed! Bruce and I talked to them about how we are like a team and when one of us is not feeling well, we will have to work together to help that person feel better. They loved this team idea... until bedtime when Lucy refused to tell Ross goodnight. He kicked her off the team. :)
Another touching Lucy moment came when she asked if Bubba would be there with her until she got her shot tomorrow. Later she asked if dad could hold her hand tight tomorrow and then added that we could all hold hands when she gets her shot. She’s certainly thinking about it but has not seemed too worried.
Until, we get tomorrow's treatment under our belt, Mom and Dad are keeping Julia one more night. She is in Nana heaven, but we are missing her dearly. It will be busier but great to have a full house again!
04/06/10
We received more good news today. Leukemia cells were not found in Lucy’s central nervous system. That means a few less spinal taps/chemotherapy treatments for Lucy! It is hard to believe that we may be going home soon. Lucy is scheduled for another round of chemotherapy at 4:00 pm. The doctors will monitor her for a few hours after that and if she is able to tolerate it, we will be discharged. I told Lucy that I had some good news for her…”we may be going home AND that big IV pole does not fit in the minivan.” The girl laughed and did a little happy jig. She is so cute!
I am happy to be able to take her home, but extremely nervous. I know that taking care of her is going to be a full time operation, and I am praying for the strength to do the job.
We are scheduled for another bone marrow sample, spinal tap, and chemotherapy treatment on Friday in a clinic here at Texas Children’s. We will be making this trip once a week for this first month. After this month, we will have a customized treatment schedule based on what type of ALL she has.
Lucy is displaying more side effects of the medications every day. It is so difficult to watch. I hate the fact that I am helping to give her medicine that is making her sicker. Not being a medicine taker myself, I am having a very difficult time pumping my baby girl with poisons. I just keep telling myself that it IS medicine and that it WILL make her better. She has several oral medicines, and most of them are not very tasty. The doctors and nurses here have been very impressed by the way she moans a little bit, but then just sucks it down. Bruce and I were relieved to know that two of her medications are available in pill form. Surely we thought that would take some of the stress off of the medicine taking. After the nurse informed us of a pill swallowing class, we signed Louie up. I took her to another building to where a lady took her into a small room set up with two cups of water, napkins and a several various sized sugar pills. I was told to say goodbye and wait in the lobby. About twenty minutes later, I was called back to see the progress. I am not sure what happened in there, but Lucy gulped down a small pill and then a bigger pill and then looked up and smiled. She was pretty proud of herself. “I know how to swallow pills!” YES!
The staff is preparing us to head home and informing us of all the things we need to know to take care of her. They have stressed that this is one of the most critical months of her treatment. Most of the leukemia will be out of her body by the end of the month. However, many of the good cells will be gone too. She will be at very high risk of getting sick throughout her whole treatment, but especially when her blood counts are low. As much as we love getting out and being with all of our friends and family, we are going to have to sacrifice our typical play routines for a while in order to keep Louie healthy. The doctors will give us the clear when we are most able to have visitors. We will learn more about her ability over time. Until then please call before you come over and know that we love all of your support via e-mails and phone calls. I cannot even begin to tell you how blessed we feel!
Thanks for your support and love! Kelly and Bruce
04/03/10
Let us start by saying that we are blessed with an amazing network of family and friends. We draw our strength from our foundations and “always there for you” support from everyone. Now to the update. We were more than blessed to receive the news she has A.L.L. Currently, her blood work is very normal with strong counts across the board, which is a good place to start. Late this afternoon Lucy received her third catheter. Now, she has two in her left arm and one in her left ankle. Redundancy is important in order to have options in case a vein or catheter goes out of service. The third catheter was for the introduction of her first chemotherapy medicines into her body versus her spinal fluid, where the first chemo was administered yesterday. We will now begin to see the side effects – nausea, moodiness, hair loss, increased susceptibility to infection, and others. Our doctors during the admission and in-patient periods have been and continue to be great and have reassured us that most of the coming side effects can be managed. If all goes well we may be done with this treatment and home before the end of next week. Lucy is doing an amazing job. She has warmed up to the doctors, nurses, and other patients and their families. She spent her day playing with Bubba, Julia, and Aunt Niki and riding through the halls on her IV pole. She told Ned that the doctors found out what was wrong with her, which makes us feel good that she knows she is going to get better. We have to keep reminding each other of that too.
A “Lucy-being –Lucy” story: Out of the blue, she told us, “If you ever need anything, I will be here. When I get big you can just call Dr. Lucy. I will take care of you… and not just mommy either, both of you.” Have to love this kid!
We are waiting for the results of the survey of her spinal fluid, which determine the number of leukemia cells that may be in her central nervous system, and the genetic studies on her leukemia. Results of these two will be in next week and help refine therapy after the first month or so.
Happy Easter! Thanks for keeping us in your thoughts and checking in on us when you can by phone, e-mail, or this great website!
04/02/10
Updates to follow, Thank You