After a bit of a delay, results are in, and Lucy’s blood shows 100% donor cells! Lucy’s little veins wouldn’t cooperate in KC, after several very upsetting attempts, so we made another plan. After a few weeks to settle/heal, our nurses in STL got the Lucy blood, and results are all excellent. No sign of disease, 100% donor, and recovering blood counts are the absolute best we could ask for. By now, it has actually been almost 19 months since her transplant, I’ll take every day I can get! Thank you for your thoughts and prayers for our girl – she is thriving!
Lucy and family are having a great summer of 2017! We are keeping so busy, thanks to friends/play dates and NO restrictions for Lucy. Every day feels like vacation and I am so thankful to Josh for supporting our family so we can have such a wonderful, relaxing, fun, busy summer break. This is the life!!
In a few weeks Lucy will have her 18 month post transplant tests in Kansas City, we are grateful for your prayers!
We are so proud of Josh for riding his bike 100 miles, around Lake Tahoe, to raise money for the leukemia and lymphoma society. The whole weekend was an amazing experience. This year, Dadddy was on”Lucy’s bicycle team”.
Lucy is playing tball this summer! We think she is a natural.
We have a huge list of summer fun activities. We are lucky to be able to enjoy this all with friends. Play dates are so amazing!! This was an impromptu trip to city garden/keiner plaza.
Circus flora is one of my favorite things! I was so happy to be able to enjoy withthe entire family and friends. The performers are amazing and generous.
Lucy’s 15 month post transplant check up was all good in KC a few weeks ago. Her endocrinology doctor was pleased with her progress; Lucy is is still on the growth charts so no need to worry about growth deficiencies from radiation (yet!). Dr. R is so kind and was thrilled to see Lucy looking so healthy and happy. Lucy’s blood work also looked good, and her blood allergy tests came back much improved. Her IGE levels for egg (which was the one that was dangerously high 6 months ago) came back very close to normal range, so we will probably soon be able to do a food challenge. When it comes to dairy, I have been testing her little by little, on my own, and have noticed significant improvement, almost as soon as she stopped taking the tacrolimus, so I wasn’t too surprised by the blood results. Still, it was very comforting to confirm this improvement. No more epi pen! Lucy also had her port and g tube removed, after a very long delay, during which she was amazingly patient. It still feels so strange, physically, that Lucy has no medical equipment on/in her body. Since she was 5 months old, with the exception of a few months before her relapse, she has had some kind of central line. Three different broviac lines, four or five PICC Lines, one port, one g tube, two extremely breif NG tubes and countless peripheral IV lines. It’s weird not to choose her clothes based on medical device placement; her chest and belly are finally wonderfully smooth and empty. The best news came a few days later from Dr. M – Lucy’s bone marrow results came back 100% donor cells with no evidence of disease!
Lucy was NPO since the night before for a scheduled noon procedure time, which ended up being 3:30 PM instead. All day, she had nothing to eat or even drink, and she didnt have a fit or cry at all! She wasn’t happy about it, but she is old enough now to understand. We give it to her straight because she is just too smart!
Just out of surgery, no more tubes!
Having fun at the cardinals game. Lucy got to push the button to open the roof at Ballpark Village.
Super fun birthday party with cousins – pancakes and pajamas! Lucy loves her new bike.
Dr. Sisters. Lucy has caught the play doctor bug now too. It’s almost like she is now processing it all, as she gets older. Her dolls are getting daily pokes and blood draws. Violet actually seems to be growing out of this phase, so I’m left to the assist Dr./nurse Lucy. Why couldn’t these two go through this obsession at the same time?
It has been a week of birthday celebrations at our house! Lucy is doing fantastic. She is happy, energetic, and charming as can be. Today she turned four years old, and celebrated by going to preschool in the morning, then to a movie, in a crowded theater. We couldn’t even imagine this six months ago. What a blessing!!!
Next week Lucy and I will go to KC for her 15 month post transplant check up, which will include the standard blood and bone marrow testing, as well as a check in with endocrinology and hopefully some allergy testing. Lucy’s food allergies have simmered down significantly. I hope to have blood tests for IGE levels to see how far things are settling, officially, since she is so far off ALL mediations now! At this point, her BMT doctor in KC has approved/requested that she have her port and g tube removed!! Perfect timing for t ball coming up this summer. Lucy has been doing so well, another big change had already happened … she has been seeing a regular pediatrician!! She has started vaccinations, finally, and actually had to go in for an ear infection recently. I’m sure I seemed like a lunatic because I was positively giddy about taking Lucy to the REGULAR pediatrician for some SIMPLE amoxicillin for an ear infection! Even Lucy was like “that’s it?”. We practically skipped out of there!
In anticipation of Lucy’s g tube removal we shipped back most of her feeding tube supplies. This pole was left behind and Lucy thought it was the BEST toy! She has no recollection of how much we hated being tethered to a pole!
Many folks will remember January 20, 2017 as an infamous US presidential Inauguration Day, but we will remember it as Lucy’s first day of school! And she loves it! No fear, no tears (from Lucy anyway), and barely a wave goodbye to mom and dad on her first day. She only goes to preschool one day a week, half day, but I still don’t know what to do with myself those few hours! We are incredibly grateful to HCA for literally squeezing Lucy into a preschool class, at a totally random time. Of course we didn’t technically register her last year, but the preschool director told me she would have a spot for Lucy. And the teachers were just as excited as we were to welcome her to school! Violet loves going to school, so of course Lucy wanted to go too! I was convinced Lucy would be terrified and upset by the separation because her life has been so guarded. Hospital time = serious one on one time. Lucy has spent a huge chunk of her life in the same room, often the same bed as me or Josh. I didn’t think she would understand being dropped off somewhere without a parent/family member. I think I’ll always worry about her being behind her peers, but then her teacher said the most glorious thing to me after her second week: “she is so independent”. After all the medical crap she has endured so bravely, I don’t know that I’ve ever felt so proud of her!
The remaing four days of our school/work week are filled with Lucy asking if it’s her school day yet, and trying to keep her busy. It’s much harder than it used to be, but a lot more fun too. This week we go to Glennon for a port flush and labs. Next month Lucy is due back in KC for a BMA, labs, and follow up visit with endocrinology and maybe allergy. Her food allergies have simmered down significantly, and hopefully will be gone altogether some day. Time will tell. This month she is due to begin vaccinations. She barley got started in the first place, she only made it through her four month shots before being diagnosed, but all stem cell transplant patients have to be re-vaccinated, regardless of age.
Just eating lunch with new found chopsticks, of course. I finally get to take Lucy on play dates. So good for both of us! Lucy manages to borrow something or invite herself to a snack everywhere we go! She really knows how to work the sad face/cute curly head.
This post is a few days overdue thanks to a wide spread nasty stomach virus (that started with Lucy!) and some sad news, but the Lucy news is all GOOD! In fact, the news is great. With every blood draw and bone marrow biopsy comes some anxiety, and this one was big. Dr. M’s words have echoed in my head for months “I’ll feel good about the leukemia after she makes one year”. We are thrilled to report that Lucy’s bone marrow is free and clear of disease and is 100% donor cells! Thank you God! The other one year post transplant tests results were also good. Lucy visited the opthalmologist for the first time (Dr. B said this is due to the radiation she received) and her eyes are healthy, no glasses neccessary! Her EKG and echiocardiogram were also completely normal. Some of the chemotherapy drugs Lucy received over the past three years are known to cause heart damage in the long term, so she will likely repeat these tests annually for some time. Dr. M thinks Lucy’s risk is low, which is always good to hear. One full year, officially in remission feels really good; we continue to pray she is cured.
Lucy felt a little crummy during our Christmas festivities, which was sort of a flashback to last year, but we were still so joyful and overwhelmingly grateful to be all together, not in a hospital, this Christmas. We are very sorry to the nine family members Lucy took down with her stomach bug, but it is kind of a sweet testament to how much she loves to play with her uncles/aunts and vice versa! Right guys? Is it sweet/funny yet?
Our sad news is that our sweet little friend Mariel passed away on Friday, 12/30 after a two year battle against an aggressive, relentless leukemia. She was four years old. Her parents fought tirelessly to give her the absolute best treatment and she endured every treatment option available, many experimental. Her story is the saddest part of medical advancement. Thanks to her brave parents, I’m certain her journey/experiences will mean lives saved in the future but it doesn’t make her loss of life any less devastating. In the words of her mother “Our baby’s suffering came to an end at 11:55 am today. She was in our arms until the end.” They shared this beautiful photo of Mariel, such joy on her sweet face. Our prayers are with her parents, Vincent and Meredith and little sister Scarlett.
It’s hard to believe we are just a few weeks away from Lucy’s first “re-birthday”. The first few weeks post transplant felt like we would never get to the year mark, but these last few weeks and months have gone by so fast, because Lucy’s health has been so great, we don’t even think about it! Lucy has been out and about, joining the rest of the world more in the past few months than ever in her life, and we are so thankful for every minute of it. Lucy hasn’t had to see a doctor in almost two months, but it also feels like her quarterly bone marrow biopsy got her really quick. In addition to a BMA, Lucy will repeat most of the tests she received just before her transplant, like EKG, Echo, hearing. We can’t see any deficiencies in Lucy’s health, and we hope ans pray the tests confirm this. Thanks to Lucy’s NP at CMH in KC all the tests will be coordinated for us over two days, we just worry about our holiday plans. We have been keeping busy in STL!
We received tickets to take the girls to their first Blues game on Hockey Fights Cancer night. Violet loved it, Lucy was terrified of the goal horn. They scored five goals.
Lunch date with mom at IKEA
After two postponements, first parainfluenza, then my virus paranoia when Lucy had the sniffles, Lucy finally had a bone marrow biopsy in Kansas City this week. Lucy went to clinic for labs and sedation for BMA on Wednesday and NOTHING else! It was a smooth, quick day … compared to our last visit (48 hours in the hospital)! Because of her very high risk (VHR – this is an actual category in treatment protocol), Lucy gets more bone marrow biopsies than some other transplant patients. Lucy has been acting and feeling FANTASTIC since ditching the meds, especiall tacrolimus, so we honestly weren’t feeling too worried, but leukemia is sneaky and really, I don’t think you can ever get used to a test to find out if your kid has cancer, again. Our prayers were answered yesterday, Friday, when we got a call from KC that Lucy’s test were all clear! No signs of leukemia and 100% donor!!! We’ve been pretty busy in the meantime …
Did you know we have two blood cancer survivors in our family? Celebrating survivors Amy and Lucy atLight the Night to support the LLS. And below is our KC team supporting Lucy. How luckt is this little girl?!!
Happy birthday Violet! I reveal a pastry chef’s shame – candle in a chicken strip… and don’t care! Just beyond grateful to celebrated this birthday with my girl, at home.
Godzilla has all the right moves at Grants Farm
Lucy was scheduled for her nine month post transplant follow up in KC last week. In addition to a bone marrow biopsy she was scheduled for a stim test with endocrinology to test the function of her adrenal gland, and an appointment with allergy/immunology to get to the bottom of her new food intolerances. It’s a lot to cram into two days but we left Tuesday, planning to return home Thursday hopefully in time to pick up Violet from school. Things did not go as planned.
A few hours after arriving at grandmas on Tuesday Lucy spiked a fever. It was late in the evening so we went to the ER (because she still has a central line, her port, a fever will always mean a trip to the ER or clinic if we were ever lucky enough to spike a fever during the working day!). I grabbed a few things but expected a long night in the ER for blood cultures and IV antibiotics, then back home. I was truly shocked when the resident came back into the room after her labs came back and told me Lucy was neutropenic and would be admitted. Her ANC was 640. She has been in a nice comfortable range of 2,000 – 3,000 since she engrafted her new cells. The following days she dropped even further, 440, then 120, yikes!
I’m sure there are several reasons for counts to drop like this, and I was fairly confident I knew that it was because Lucy had a virus. Violet was sick a few weeks ago and Lucy had started coughing and sneezing that very day. Logically, I knew she must have a simple bug, but a drop that drastic in blood counts could mean relapse. Thankfully, a nose swab in the ER rapidly revealed Lucy had the parainfluenza virus. That made me sleep much better that night … except Lucy was squeezing me out of a narrow hospital bed, so let me take that back. It has been six months since Lucy and I slept in the hospital, a nice run. At least we only spent two nights, and Dr. M got a lot accomplished for Lucy while we were there.
Lucy had a stimulation test to check the function of her adrenal gland. When a person is on steroids for a long time, like Lucy was, the adrenal gland literally quits making cortisol because the body is getting what it needs (steroids). Lucy was on replacement hydrocortisone for a month after stopping steroids then we stopped that cold turkey to convince her adrenal gland to pick up the slack. Before the results of this test Lucy needed a “stress dose” of steroids when her body was in stress, like with fever, vomiting, or surgery. Good news, she passed! One bottle of medicine in the “no use” bucket. Next was a visit with the allergy doctor (which was kind of useless) and blood test of Lucy’s IGE levels of suspected food intolerances (very interesting). Lucy was way off the charts of a “normal” response to eggs and dairy, which were specifically tested for since I reported as making her sick. Dr. M has been reading literature about the possible connection between tacrolimus and food allergies reported in solid organ transplant, with support of potential cases reported at CMH, so he stopped Lucy’s tacro. Her levels were low enough to forgo the wean and just stop. This is the immune suppression drug that also required profolaxsis antibiotics and a magnesium supplement, which we suspected has been causing diarrhea and maybe a touch of nausea affecting her appetite. So now these are gone too, three more meds off her list, wahoo! The day of discharge Lucy ANC was a scary 120 so Dr. M gave her a dose of GCSF to see what he body would do. At clinic the next day (Friday) in KC her ANC shot up, to over 5,000! Dr. Myers said with a huge grin that he felt this response supports his feeling that this is not leukemia, just a body in recovery from a virus. After this artificial boost he expected her counts to drop back down and recover in a week or less. Yesterday (Monday) labs in stl revealed that Lucy’s counts have recovered, completley, with numbers better than we have seen in months! Over the course of a few days we were knocked down low, only to be brought up higher than we have been in months. Always on guard, I wanted to question our docs if this is normal? Is this ok? But instead I will thank you all for your continued prayers for our girl.
Ahhhh, where to begin? As usual, Lucy keeps us all guessing. After several dose increases, her tacro level was back to where it should be. We hoped to settle in for a smooth ride for a while; but what fun would that be?
Lucy’s appetite has been declining since stopping steroids, as expected, but a few weeks ago it got really bad. Several days in a row she barely ate anything (sometimes she would “catch up” after a light day, not this time.) and she was having terrible diarrhea off and on. Her red, dry face and flaky dry scalp was still persistent and she just didn’t look good. I was worried about her weight loss, but it was pretty gradual so not a huge red flag. That week at clinic I talked with the doctors about scrapping the plan to remove her g tube and was going to start giving her food through it again. We also discussed the signs that she was showing of having a milk allergy, for sure, possibly all dairy? We also decided to switch to a new form of magnesium supplement that is less likely to cause GI issues. We left clinic that day with a pretty good plan, and a few hours later I got a call from clinic, with a big red flag. Her tacro level was triple what it should have been. The biggest concern is the effect on her kidneys at this way too high level. Her creatinine level (kidney function, elevated is bad) was still “normal” but a bit high for her, and showed a rising trend. Dr. B didn’t know why this happened, so that was a little scary. Thank God for the g tube, it saved Lucy a long day at clinic, maybe even a hospital stay. Lucy needed fluids to protect her kidneys and bring down her creatinine, and thankfully Dr. B was ok with us giving her water and pedialyte through her g tube overnight. After lots of fluids, lab checks for a few days and decreased tacro dose, her levels were back to normal.
Throughout this mini crisis, another mystery lingered. Dr. B said the fact that Lucy’s face and scalp did not improve at all with a tacro level that high leads her to the conclusion that this reaction is not the result of GVHD. It is somewhat of a relief, but leaves us back at square one. After several adjustments with foods and drugs I think we finally have Lucy’s GI issues under control, and are maybe closing in on some solid theories about her face … But we’re not there yet. We are waiting for an opening with allergy/immunology where I’m hoping for help/testing for food allergies. Dr. M and Dr. B have chatted and decided to wean tacro, no matter what, and see if this helps. They will use a different drug entirely if she flares – good riddance tacro! I suspect her tacro level may be down a bit from her last draw, but we weren’t able to get a blood draw today. Lucy’s skin broke out from a different brand of numbing cream I used on her port today (of course!) so Dr. B didn’t want to stick the needle in just in case it got worse. She said “Lucy’s skin has a mind of it’s own!” That’s for sure.
Whether it is a cold or a stem cell transplant we always want our kids to heal faster and suffer less than their little bodies are capable of, and it can be frustrating and sad. But seriously, Lucy’s current problems are small issues and life goes on, loud and enthusiastic in the Bacott house. We see and hear of the major struggles in some of our cancer parents support groups and feel very lucky right now. Our dear friends here in STL recently celebrated their daughter’s fourth birthday with a long awaited party with friends and days later found out she has relapsed, again, after two transplants and CART therapy. We feel extremely grateful to be dealing with dry skin and poor appetite. Please say a prayer for sweet M and her family as she faces the beast again.
Water balloons were the star of summer 2016
Back to school! Some were happier than others.
“The face”. Lucy pretty much always looks like she just woke up. At least her scalp has cleared up so we don’t load it up with coconut oil as much. She was looking pretty pathetic with greasy hair and red bags under her eyes.