Right as I was settled down at our Ronald McDonald House suite to write a post on the eve of the biggest day in Lucy’s 20 months of treatment, I was promptly interrupted by our subject running head first into the corner of the desk, bursting into tears and sending Kenda scrambling to the communal kitchen for ice.
Such is life documenting a kid straddling the line between medical trailblazer and standard issue toddler.
Now that we’ve mitigated the swelling, we have a minute to put the latest incident in context. Tomorrow is Day Zero – clinical trial lingo – in Lucy’s treatment. The first time we even heard about this revolutionary T-cell treatment was via a short video called Fire with Fire and, when I originally watched it, it still carried this distant, mystique to it, like most “medical breakthroughs” we see scattered through the media. Sure, it was fascinating and it certainly was relevant since Lucy had the same disease as the patient featured. But our optimistic side never believed we’d be in a position to want T-cell therapy and our practical side believed that, even if we did have a need for it, there was no way it would be approved by the FDA for widespread use. It was a pipe dream at the time.
And then the dominoes started to fall. We did more research and saw other versions of the T-cell therapy coming to light including Seattle’s Plat-02 study. We interacted with another family in our Facebook Infant Leukemia group whose daughter was receiving this far fetched treatment. Then in January, Lucy relapsed and we were thrown back into the horrors of chemo. Two weeks after re-induction we found out that Seattle was the first to open their trial to kids who hadn’t yet undergone bone marrow transplants. We reached out to Dr. Gardner at Seattle Children’s, but Lucy’s quick remission seemed to squash hopes of entering the trial.
After weeks of stress, we learned we’d been accepted and, from there we navigated through a series of hypothetical pitfalls – what if her T-cells didn’t grow? What if the B-cells that her modified T-cells needed to stimulate action were still wiped out from her two weeks of Blincyto? What if the chemo she took in preparation sparked a rogue fever to delay the whole thing? They were all long shots, but any of them could alter the game plan.
After all that, tomorrow at 10:00 pacific time, Lucy’s genetically modified T-cells will be removed from a freezer and injected into her blood in what is a surprisingly simple procedure. Once they go in, she’s officially a participant in a remarkable advancement in Cancer therapy, but for us, it’s crossing over into a new part of this process. We’ve spent the better part of three months – or twenty months if you go back to her original diagnosis – working to get to this exact point. It’s time to see if immunotherapy is the magic bullet that will put leukemia behind us once and for all. Put up or shut up time for the T-cells.
When we arrive at the clinic tomorrow morning, we’ll just tell the nurses and doctors that the new shiner on Lucy’s right eye is serving as a symbol of the battle it’s been to get her here.
Lucy breezed through her chemo on Saturday and we were back home early Sunday morning. The hospital is pretty amazing. The oncology floor is brand new and state of the art! Though toys and activities for kids were lacking, we really enjoyed the movies on demand.
Now, the downward spiral of Lucy’s immune system begins! It is absolutely impossible to quarantine Lucy to our room, without losing our minds or someone suffering a major injury. We tried to “relax” in our room last night and Lucy was bouncing off the walls, and tackling her sister. She was so wound up! What was in that chemo?! Luckily we have some nice weather today so we will play outside as much as we can. Tomorrow Lucy will go to clinic for labs and then we will meet with Dr. Gardner. If everything looks ok we will proceed as scheduled and Lucy will get her T Cells on Wednesday, at 11:30 am, pacific time.
Lucy finally fell sleep at dinner time on chemo day. I think she was really excited about being in a new place. Violet took advantage of being able to choose the movie. I think we watched the Curious George movie four times.
This is what play time looks like. These girls are crazy with the rough play, and Lucy leads the charge! We have to try to keep Lucy safe while her counts drop, but we are also trying to savor these days where she feels great.
Finally a beautiful SUNNY day! This neighborhood cat is always around the house and Violet is obsessed with him. He is really friendly, unfortunately he likes to climb in MY lap when I sit on the bench. Unfortunate because Violet desperately wants him to snuggle her, and I’m allergic to cats!
We have arrived in Seattle! We are very glad the travel part is over and are settling in at the lovely Ronald McDonald House. We have a cozy little room and very nice shared spaces including kitchen, laundry, living areas and lots of play areas for the girls inside and outside. The volunteers are awesome, making meals and helping with cleaning the common areas, and offering activities like pet therapy. The hospital is just across the street, and they offer free pick up from the RMH, but we walked yesterday and it was no problem, took only a few minutes.
Lucy had her first appointment yesterday. Labs, meet with Dr. Gardner again, then procedures. She had an LP with chemo and bone marrow biopsy. Results are in today, and her marrow is still MRD negative for leukemia! Many people have asked, does this mean she is in remission? That’s an important question, and for leukemia, specifically, the short answer is no. Lucy would not be accepted into this trial if any oncologist believed that there was any chance she could be “cured” right now. But we believe she will be after this treatment!
It’s hard to reconcile our emotions right now, especially with the recent press release from Seattle Children’s hospital boasting a 91% success rate from the PLAT02 triall! We are practically giddy with excitement that Lucy gets to be number 26 in this clinical trial, but it takes my breath away when I stop to really think about why she is here, which leads to to a big prayer request. Lucy’s type of leukemia is particularly aggressive, like all the patients in this trial, but what is unique about hers (and only a few others in the trial) is that it has an MLL rearrangement, which makes it possible for her leukemia to spontaneously switch from ALL to AML, which would not be destroyed by these particular T cells. There is no way to predict this, it’s just a possibility that we need to be aware of. We (this is a big “we” because I can’t even count how many people have been a part of this) have gotten Lucy this this far and are reaching the point where it is out of our hands, and all we can do is pray for the good results that we believe we will get – a cure!
The good news is that as a result of the bone marrow test, Dr. G decided Lucy would only need one dose of cytoxin instead of two. We are always happy about less chemo! Tomorrow Lucy will be admitted for her one dose of chemotherapy. We hope she tolerates it well, and we hope and pray that we can keep her safe when her counts drop. Dr. G told us previously that she didn’t expect this to drop her counts all the way to zero, but she doesn’t have far to go. Her ANC has been steadily dropping in the past week and yesterday’s labs revealed it had dropped again, under 500. It makes communal living kind of scary, but honestly it’s pretty quiet here. We have only seen a few kids, which must mean that they are all inpatient, and their families are with them at the hospital.
We still have a very long way to go, and the hard part is coming up for Lucy, but we just feel so lucky and grateful to be here! See what I mean about reconciling our feelings? It’s easy to be joyful when Lucy is feeling so incredibly fantastic, playing for hours with her sister. We are pretty optimistic that Lucy will not be in the 30%-40% of patients in this trial that has to spend time in the ICU after getting her cells, but it is possible. Hard to believe when we look at this bright happy face!
Big girl in her own seat on the plane!
Violet and her new friend Maggie at pet therapy at Ronald McDonald House
Post sedation meal. We were all starving after a long morning of fasting with Lucy! That sweet soft fuzzy hair is coming in, but unfortunately Lucy’s head will have to start from scratch again after tomorrow’s chemo. Still super cute!
Hello, this Justus Bacott, Lucy’s proud uncle, taking over her website for moment!
As you have read here, Lucy has taken her family on a long trip across the country this week, to Seattle, where they will be for a month or so to receive a revolutionary new T-cell cancer treatment. We hope and pray that this is her final, decisive, victorious battle against this leukemia.
When Lucy’s cancer came back, we fielded inquiries from so many of you as to how you could help.
First, please know that Josh, Kenda, and all of our family have been overwhelmed at the generosity people have shown in helping since the outset of this ordeal. This has been a tremendous blessing to them and to all of us.
Now, with the help of some family and friends, we are putting on an event to help raise financial assistance to help them defray the costs of this extended trip. This is a wonderful way to help, if you can and wish to do so, while having a great time in the process.
Please join us on May 15th for LollapaLucy – A night of art, music and love for Lucy!
I invite you to visit the event page, where you will find the event details and ticket purchase information.
Tickets are $35/person and, due again to the generosity of Lucy’s friends and family, we can assure you that nearly all of the proceeds will go directly to the Bacott/Morado family. Tickets are limited, so please purchase sooner rather than later if you are interested in going. If you cannot attend and still would like to help, consider donating directly to them at https://www.gofund.me/lollapalucy
On behalf of Josh, Kenda and their family thank you again for being there for us!
We got a call from Seattle children’s Hospital last week letting us know that Lucy’s cells were growing “very well” and everything is on track for her infusion, as planned. Great news! Good thing, because our return date is next week. After this call, we booked our flight, and accommodations, putting us at ease a little.
Meanwhile, life has felt surprisingly “normal” at home. We just can’t believe that Lucy still has an aggressive, life threatening disease in her body. Lucy doesn’t look or act sick, so we don’t even think about it, and I think that’s ok. We keep her as safe as we can while having as much fun as we can.
Speaking of safe, Lucy had chemo on Thursday and I took her in to check counts on Monday to find that they have absolutely tanked; like “lockdown” low. I was hoping to get her out a bit for errands, and to see friends before we leave, but we can’t afford for her to get sick before the “Big Show”. The good news is that Lucy seems to be feeling pretty good, just a little tired and clingy, but we can handle that! Speaking of clingy, sweet Violet has crawled back out of her shell. The news of Lucy’s relapse was scary and sad for all of us, especially to Lucy’s best friend, Violet. Now that Lu is feeling good these two are playing so well and so wild together – Sister Therapy!
Easter egg hunt in the back yard
They copy each other’s every move. Sometimes cute, sometimes trouble!
Just an average day at home with me and Lucy. Perfecting her superhero outfit and busted getting into big sister’s lipgloss.
The little blessings continue to shower us as we enjoyed absolutely perfect weather for Lucy’s second birthday on Tuesday. We are very superstitious about planning holidays and events in advance, so with one day’s notice we threw together a play date/celebration at the park. Lucy loves the playground, a rare treat because she is so fearless she needs a constant adult shadow.
The chemo free honeymoon is over and yesterday it was back to clinic for treatment. Lucy had an LP with chemo, vincristine and methotrexate. Sounds like a lot but she is doing well. Unfortunately her blood test revealed that her ANC dropped by half since Monday, yikes! It was still high enough to get chemo, but very near lockdown criteria, so we will be celebrating Easter inside. It is no big deal, we are so happy to be in our home in St. Louis!
We should hear from Seattle by the end of the week about Lucy’s T cells. I will assume, as always, that no news is good news and the cells are well on their way to being “serial killers” … to Lucy’s cancer, that is! We will get a firm return date to Seattle then, but it wil, probably be around three weeks.