Lucy just had her last appointment at Seattle Children’s Hospital. We are truly sad to end our visits with Dr. G and Heidi. They are both so kind, smart, generous, patient, and fun and it will be weird to not only not see them again, but to be 2,000 miles away! However … we can’t wait to go home!
Lucy’s blood test results were initially discouraging (to us!) but the bone marrow results are better – she had 3% T cells in her marrow. We always knew that at a certain point the T cells would be undetectable in her blood, and their presence would be assumed if there is a lack of B cells – we just hope it’s not happening too soon. The CAR T cells seek and destroy all of Lucy’s B cells, malignant and normal, so if Lucy has no B cells at all then T cells are doing their job. This level of T cells is ok, and so far there have been no B cells in her blood or marrow, so this is all good news! Where do we go from here, besides HOME?
There is still a risk that Lucy’s body could reject these fantastic, miracle T cells. This risk is highest in the first few months, so we have another month to go before any predictions can be made about the success of this treatment. The rate of rejection is much higher than we thought – about 50%. The big question of “how long” do the T cells have to hang around until they kill all the leukemia cells is still unknown, unfortunately. We do know that longer is better, and I don’t think any oncologist would believe that just a few months of T cells working in the body is enough time, so NO rejection is an important goal. We will breathe a big sigh of relief if we get to the end of month two with T cell presenc; BIG prayer request!
There are many “what ifs” in this treatment, and we briefly discussed the options with Dr. G. It is possible that Lucy may need a bone marrow transplant, or she could try another dose of CAR T cells, or she could be cured forever. We are betting on the latter; we choose hope. It is a difficult balance, to enjoy every precious moment with our girls who seem to grow in the blink of an eye, while also mentally crossing off each day as one day closer to a cure, but we are doing our best. We have learned that constant worry and obsession over the what ifs gains nothing. Also, enjoying every moment with no fear and no plan for the worst is really ok.
We were walking around the lake with the girls yesterday when we got a call from the hospital with Lucy’s blood test results that we had been seeking. Unfortunately, it was not so great – she had 0.8% T cells in her blood last week. I say “not great”, but honestly we don’t know what this means. As I mentioned, we won’t get a chance to talk to Dr, G about this until next week. The results of Lucy’s bone marrow aspirate and lumbar puncture today should be back by then too, so more information to interpret and discuss. We remain hopeful and optimistic. Please God, let this be a cure for Lucy!
Though we couldn’t make it to the event last night, we could feel the love and support from Lollapalucy all the way here in Seattle! I think our friend Jeff put it best when he said “you have a lot of cool friends and family”. We couldn’t agree more, and we don’t think we can ever thank you all enough – our hearts are overflowing with gratitude. Josh put together a short video of a glimpse of our experience so far, check it out here (I still, cry a little every time I watch!).
The generous financial support is appreciated so much, and the time is just right, because there has been an interesting twist in our Seattle adventure. We got a call the other day from the doctor telling us thst Lucy could have potentially been exposed to the chicken pox virus at clinic. The team there agreed that Lucy’s risk is very low, but protocol must be followed. First, she received IVIG (no big deal, her monthly dose was due anyway). Second, she has to take antibiotics for three weeks. I almost choked when I picked up these two giant bottles. She needs to take a big dose four times a day. So far it has been going ok, through various methods of mixing and bribing. The third and most unfortuanate result of this “exposure” is that we are kicked out of the Ronald McDonald House! Lucy is being singled out as a little carrier monkey because she has not had the chicken pox vaccine; she has been in treatment since she was 4 months old, so that’s when her vaccinations stopped. The RMH is very sorry to have to give us the boot and has generously offered assistance with other accommodations, and we totally understand and support this rule. We will miss it here for sure, but we are looking forward to our next “home” for a while. Thanks to the very generous support of many, many people, what could have been a stressful situation is a minor inconvenice. We found a cozy little rental across the street from a huge lake and park with tons of space to play and lots of restaurants within walking distance.
Lucy has a pretty light schedule from here on out. Only two more weekly appointments before we get to head home! Next Wednesday, along with her regular doctor visit and bloodwork, she will have a bone marrow biopsy and lumbar puncture to look for T cells in her marrow and spinal fluid. Then one more visit the following Wednesday for bloodwork again, and what will probably be a lengthy Q&A with Dr. G. We have a ton of questions but we need more results before it’s worth having a discussion. We are anxiously awaiting the results of Lucy’s blood test last Wednesday. The percentage of T cells in her blood will be an early indicator of how fast they are depleting in her system. Dr. G would be pleased with 5%; we think our responder can do better! At least this is what we pray for. This is the second huge hurdle to pass for this to be a cure for Lucy. Please stay with Lucy T cells! No fizzle!
We have been floating on air since the good news about Lucy’s T Cells , and suddenly we realized, we have been in Seattle for three weeks! We mentally prepared for Lucy’s post T cell hospital admission to be a week or more, and since it was just 48 hours we find ourselves a little lost, but in a very good way! For 14 days following the infusion Lucy has to be seen at clinic for labs and a visit with a doctor, so this appointment is the main thing we do each day. When the weather is nice we enjoy the five minute walk to the hospital, and I always enjoy a good coffee in one of the three hospital Starbucks. The “research labs” which are sent off to test for T cells will be drawn from Lucy again on Wednesday, which is also the next time we see Dr.Gardner, so we will be able to discuss Lucy’s progress on the trial, and hopefully the bone marrow results. We don’t always get to meet with Dr. G, and not all of the oncologists on the team know the specifics of the PLAT02 trial, so since Lucy was discharged on Friday we have been sort of taking a mental break from it all, and accepting the early success of this amazing treatment with much gratitude.
Though the clinic visits are quick, we are not venturing out on the town just yet; Lucy’s counts are terrible! Her ANC has been under 500 (lockdown threshold) for days! She even flirted with a possible blood transfusion but finally her numbers are creeping up again. The good news is, Lucy continues to feel fantastic, as far as we can tell. She is one funny, sweet and feisty kid! She is always the instigator in the sister wresting matches, while also copying Violet’s every move. We are so grateful every day that we get to be here as a family through this entire process, but I am especially thankful when I watch the girls. I used to groan when Lucy’s counts were low, she would get so crabby, probably sick of seeing just me all day! But with Violet and Daddy around she is a different kid; so happy!
Thank you all for your continued thoughts and prayers!
Praise The Lord, the T cells are here!!
Lucy’s fever got a bit higher and lingered on for about 24 hours. Luckily she suffered only mild discomfort and her vital signs stayed normal. It seemed like pretty good evidence of T cell activity. Dr. Garnder stopped by Lucy’s room yesterday and said blood tests on Monday showed no T cells but that was expected. Labs results from Wednesday and Thursday blood draws would be in soon, and Dr. G said what would be “really be fun” (we love her!) would be to see not only T cell presence but some measured increase. Well, thank you prayer warriors because that is exactly what we got!!
It was a mini storm in Lucy’s body, but it did the job! Just a few hours after we saw her at the hospital, Dr. G called us to report that Wednesday’s blood showed 10% T cells and Thursdays showed 27%, better than Dr. G expected, wow!!! Those glorious little cancer killers are engrafted and dividing, so the risk of rejection has passed (as far as we understand), YES!!! Now we wait and watch over the next several weeks and hope and pray for no “fizzle”. Please stay with Lucy, T cells, for a very long time!
The complete bone marrow results are not in yet, the results should be just as good. At this point most families are hoping and praying to see no leukemia, or in really tough cases even less leukemia would be a reason to celebrate. We almost forgot about the leukemia part … We would expect and hope to see none in Lucy’s marrow.
Lucy is feeling good today! Snuggling and wrestling big sis. A little too wild for a girl hooked to an IV, in our opinion!
I’ve never been so excited to announce that Lucy has a fever! She woke up warm this morning and hovered just below the “official” threshold temperature for the study. We went about our long day at clinic – labs, check up, anesthesia for bone marrow aspirate, and we could tell she was worn down. We even waited a bit to see if a fever would spike, but she kept bouncing back. About an hour after we got home, of course, she spiked. I’m in the ER now, Lucy just got antibiotics and will be admitted. The fever is really low, but it has lasted all day. We hope this is a sign of busy T cells, and pray that her reaction remains mild.
The bone marrow sample and extra blood test today will show if/how well the T cells are working. We hope they are dividing like crazy and invading her body!
We ares till in Seattle, and still waiting on the big fever! Today is day five, and we are starting to get anxious. Still plenty of time, though. Dr. Gardener said that if Lucy doesn’t get a fever by Thursday or Friday that we should expect that she just won’t get one. This doesn’t necessarily mean that the T cells have fizzled out, though. Today was her first blood test looking for T cells; results will be back on a day or two. On Wednesday is an even bigger test – Lucy will have a bone marrow aspirate to test for T cells. We are praying for some T cell presence! If Lucy could still get the benefits of her cancer killing CAR T cells and not have to suffer through a reaction so harsh that it may land her in the PICU, well, that would be ok with us!
The good news from Lucy’s lab results today are her counts. As I think I mentioned, Lucy will go to clinic for labs and a visit with Dr. G everyday, so we have been getting counts everyday. We knew her immune system would be down from the chemo, in fact expected NADIR (lowest point, often zero) on or around day ten; today. Our worry was how fast would counts bounce back? It looks like yesterday was the low and today everything is on the way up! She is no longer neutropenic, great news! We can ease out of seclusion a little bit in the coming days, thank goodness, because Lucy is still full of energy! Both girls are getting a little bored, actually. Luckily the weather has been nice enough to play outside a lot, and we stay in the great playground at the House because we can’t venture too far away on fever watch.
Today is day two and the elation of the T Cell infusion is wearing off and it’s down to serous business. Now we wait and watch very closely for the reaction.
The actual infusion went great! Lucy was premedicated with Tylenol and our good friend IV Benadryl so she slept through the whole production. The process was fascinating! The brilliant scientists who worked on Lucy’s cells in the lab rolled in a large contraption which held a dry ice cylinder that held Lucy’s T cells. They thawed them in a special water bath in just a few minutes and through two separate injections – first 31 million “killers”, then 31 million “helpers” – they infused Lucy with her own modified T Cells! Both girls were very patient for the remainder of the 6 hour post-infusion observation and then we were on our way! The only noticeable side effect was that Lucy smelled like creamed corn for about a day. It is the preservative used when freezing the cells, and it smells awful. Thankfully Lucy was sleeping during the infusion because it can make kids throw up. I can see why, it smells horrible. Lucy didn’t notice.
Now we wait for the T cells to start working. It is expected that this will cause a fever somewhere between day 3 and day 10. Until the fever or reaction of some kind (we are on watch for any signs of “unwell” in Lucy) we will go to clinic every day for labs. They won’t actually test Lucy’s blood for T cells every time. It’s a special blood test that they only do once or twice a week. The first one of these that may start showing T cells is on Monday. Our good friend Jean asked what are we praying for? Well, it’s hard to believe but we are hoping Lucy will get sick! But not too sick. A fever means that those killer T cells are dividing and working in her body, which is what we want! Because she has no detectable disease in her body our fear is that the cells “fizzle” out. So we are praying for fever no fizzle!
Thank you Dennis and Laura! Laura said she worked on this “product” and Lucy’s cells were “happy cells”
Nurse Megan and Heidi doing countless checks before giving the cells. Megan did two T cell infusions that day – a first for the study! We laughed with Megan about how she goes home and talks with her husband about “so, what did you do today?”