It has been two weeks since Lucy and I left St. Louis. We are missing Josh and Violet lots, as well as Papa today, especially, because it also marks what should have been his 68th birthday. I sure did need my Dad’s lifelong example of patience yesterday!
Thanks to the generosity of our family and friends, we are splurging a bit, renting a car for a few weeks, so I pre-scheduled a pick up for noon yesterday. It was good timing because Mondays labs showed that Lucy’s ANC has dropped a LOT. I normally wouldn’t let her out of the house at this number, but our current house is full of people! It will be nice to be able to get away from the crowd, visit some new parks. After waiting all day long and trying not to blow my top from some horrible customer service (really, Enterprise guy, you tried to pick me up in a two seat convertible after I called to confirm the pick up and let you know I will be installing a car seat?) that is almost funny now, we finally have our ride. On our way back Lucy asked where we were going and I told her “McDonald” (she is quick to correct me if I call it “home”). She threw her hands up and said “but Mom, you have a CAR!” Indeed, my little smarty pants. So we drove our Russian friends to one of our favorite parks after dinner. Good idea Lucy!
Most days we just hang out and enjoy the beautiful weather, but tomorrow there will be more action, though not so fun. We will go to clinic for labs, doctor visit, dressing change on her PICC line, and Lucy will have her first bone marrow biopsy in addition to blood drawn to test for T cells. Which reminds me … Lucy’s bone marrow test performed back in St. Louis, that was sent to Seattle came back (through Dr. B in St. Louis). The results are MRD negative, no sign of leukemia! Of course this is great news, however, it may also confirm the theory that these new T cells may have nothing to do and just fizzle right out. Lucy has had a few blood tests so far looking for T cells with results expected later in the week. These results are from very early in the process and Lucy didn’t show anything this early yet last time so no high hopes yet. Today is day +5 and Lucy showed absolutely no signs of anything happening until the big exciting fever of day +8, so I won’t completely panic until then.
Lucy received her T cells yesterday like a champ. The first time she slept through it all, but this time she fought that IV Benadryl with everything she had! She was a pretty groggy, but she stayed awake and was pretty enamored by the whole process. This time she also got to smell and certainly taste the creamed corn aroma for herself. Lucy received a slight increase in dosage due to her increased weight and received 65 million T Cells, half “killers” and half “helpers”, in two infusions, 15 minutes apart. The second dose finally got to her with the smell/taste and she shook her head and scrunched her face in protest. However, two suckers and a roll of smarties later and she was fine. I have major respect for our nurse, Kristen, who is pregnant and didn’t even flinch!
Now we wait. Same as last time, we hope and pray for these T cells to set up camp in her body and make themselves comfortable. A fever would be nice, but I’m not pinning my hopes on it because she could engraft without a major reaction. No one knows what to expect, becaus Lucy is truly one of a kind! Come on T cells, get in my baby!!
Meanwhile, in Seattle, things are good. Lucy is full of energy and I’m in that familiar place of chasing her with hand wipes and begging her to wear a mask while trying to keep her busy/burn off her energy! I’m so grateful that Lucy feels so well! We are so happy to be here at RMH. We have made new friends, reconnected with old friends, learned the Russian words for squirrel and cat, and tried authentic “Eskimo ice cream” with fry bread. Josh and Violet are enjoying the generosity of family and friends in STL through meals and play dates after school. We are both so proud of both our girls!
Lucy breezed through five days of chemo with only a slight decrease in appetite. Today she had her pre T Cell infusion visit with Dr. S and she looks great. Her counts were not as low as I feared, but they will continue to drop for a few more days before climbing back up. Luckily the weather has been nice enough to play outside everyday, no rain!
Tomorrow is the big day. Lucy will get the same dose of CAR T cell “killers” and “helpers” as the first time at 10:30 am PST. Like last time, we stay in clinic for five hours post transfusion for observation then we are on our way. As I have mentioned, all previous re-infusions in this study have shown zero T cell persistence and therefore no side effect/systemic reaction. However, none of the patients received immunosuppressant chemotherapy like Lucy did; she is a trailblazer! Again, we are hoping and praying for our little Responder to get just a little sick.
For I know the plans I have for you, declares The Lord. Plans to prosper you and not to harm you. Plans to give you hope and a future. Jeremiah 29:11
Lucy loves to help the nurses with her “tubie”. She is never afraid at the hospital, she told me today it is where “they take care of me”.
Please also keep our friend Olga in your prayers. What a great blessing that Lucy has met such a kind and patient friend.
Three days of chemo down, two to go! For the most part, Lucy is handling it very well. She won’t have any labs drawn until the day after she finishes chemo so it’s a little unnerving not knowing what her counts are right now. The doctor has said counts will drop on day seven so I’m trying not to worry about it … yet. The only noticeable side effect so far is some “chemo diet”. Lucy seemed to be losing her appetite in the evening, after chemo first thing in the morning, so it’s back to “what Lucy wants, Lucy gets”. Three juice boxes in one day, chips for breakfast … or maybe it’s just me being overindulgent. I gave her an extra dose of anti nausea meds today and her appetite seemed much better, so hopefully that was all she needed.
I admit to giving her whatever she asks for right now too, chemo or not. She is beginning to ask where Dad and “Vi” are. Today I tried to distract her during a dressing change with home videos from my phone and when she saw herself and uncle Jason on the carousel at the St. Louis zoo she was very upset thst I couldn’t take her there (we went several days a week at home!). The weather is nice in Seattle and walking is pleasant so we will get outside as far as we can walk/stroller.
There is one family still here from our last stay at RMH, and it was nice to see a familiar face (and their baby is doing great! She is here now too !). We have started to make new friends already; one huge perk to staying at RMH. Immediately we were drawn to a mom and little girl. Lucy was instantly smitten with Olga even though she is older (ten years old) and speaks no English! Last time we were here people gasped at how far we were from home – we lose the distance award now! Olga and her mom live in Russia and I admire them enormously for their bravery. They are kind and generous and welcoming despite being in a whole new world. After spending the entire evening together I quickly downloaded a translation app on my phone (Olga’s mom already had one) so we could communicate better. After lots of back and forth we discovered both our girls had aggressive leukemia, and Olga is here for T cell therapy! Wow.
Big girl in her own bed. Just four moths ago I downloaded some apps for Violet to play on my phone and iPad. Lucy was not able to do it then – look at her now! She can work the smart phone better than me!
We made it to Seattle! It’s amazing to see how much better Lucy feels right now. She didn’t sleep a wink on the flight, which arrived at 11pm St. Louis time! It was even hard to get her sleep once we got settled. We had to stay at a hotel last night because Ronald McDonald was full, but luckily we got a room today, we are so relieved. The kind staff here welcomed us back and commented how much Lucy has grown. It’s hard to believe we were here just four months ago. Lucy was so excited to be here, begging to play outside and the playroom, running around like crazy. She had fun here last time, for sure, but I remember still carrying her a lot. She is buzzing around like a maniac now. We had a very short night and a long morning, but she was still so full of energy I had to trick her into taking a nap today!
Lucy’s appointments started early with labs, then evaluation with Dr. S, then a quick chemotherapy infusion. This was day one of five chemo infusions. It is low dose, so hopefully side effects will be mild and manageable. The known and desired side effect is that Lucy’s counts will drop. This drug is an immune suppressant typically given in high doses to transplant patients as part of the conditioning process for transplant. No one really knows the exact side effects Lucy may suffer, at this low dose. I just hope to keep her safe and comfortable.
Little girl in a big bed! The hotel had a nice breakfast, but it was a bit too far to walk to the hospital. Three shuttle rides later, we are very glad to be back at RMH tonight.
Lucy had surgery to place her central line today and all went well. We chose a PICC line, which is easily removable and less invasive than a Broviac or Port. She also had a bone marrow biopsy to check for any leukemia.
A few weeks ago something else scary was going on with Lucy – her counts began dropping. A dropping platelet count can be an early sign of relapse (and in hindsight this was true for her relapse) so we were worried. Very worried. She had also recently started a medication known to lower counts and we hoped this was the problem, so we kind of brushed it off. However, when she lost her T cells a few weeks later we were terrified, and Dr. B and I both looked at each other and read each other’s minds “let’s do a biopsy”. She also stopped the medication and we went for several follow up blood tests. I’m happy to report that her counts have been recovering, with today’s being excellent (to me!). I’m glad we got a bone marrow biopsy, but I have to believe that rising counts means her marrow is pumping out healthy cells and there is no leukemia. The sample goes to Seattle (ha!) for MRD results so it will take about a week for results.
Lucy and I will leave for Seattle on Tuesday. Flight is booked, appointments are set and Violet knows. That was really hard. For the most part, Josh and I are feeling hopeful and optimistic right now. Honestly, Lucy feels so great that it’s kind of impossible to be sad or mopey. She also can not understand what is happening, but Vioet can and does understand and she’s very sad. To my (sad) surprise she was more upset that Lucy is beginning treatment again. She could never understand how comlplicated it really is, but she cried because she vividly remembers “mom and Lucy going to the hospital for a long time and Lucy got bald and started throwing up”. So much for “she will never remember this”. Lucy is also older and wiser. I explained that she was getting “tubies” again, and she didn’t like it. She had an infusion today too and when her nurse unhooked the medication Lucy was very upset because she didn’t also ” take the tubie out”.
Dr. B has been as wonderful as we knew she would. She was holding my hand when we got the call from Seattle and immediately asked them (I was too shocked to talk!) how soon could Lucy come back. She said “Lucy is in a class of her own” and encouraged us to try this re infusion. Lucy is, in fact, a unique case. The awesome team in Seattle has a plan just for her. She will receive five days of a low dose chemo prior to the T cell infusion (a first for the trial) in hopes of making “room” for the CAR T cells and perhaps surpressing her immune system to better accept them. We are very hopeful for this plan and pray that Lucy will do her RESPONDER thing and be the first to accept a second dose. It truly is all about Lucy and finding her cure, but we are also so proud of her contribution to this groundbreaking trial. This is the future of cancer treatment and it’s about damn time.
Lucy’s new tubie went to work right away, getting a monthly antibiotic infusion. Back to chemo, and a central line means low counts, lockdown and fever trips to the ER again.
In addition to a frozen yogurt treat Lucy got a fun box of games and toys to keep her entertained. Perfect timing for these special treats at clinic because our expected short day turned into a long one.
We received some very disappointing news from Seattle yesterday – Lucy has lost her T cells. We are nervous with every blood test, but this was truly a shock; last months results were very good and we were told Lucy passed the danger mark. We really, truly, believed that Lucy would keep these cells until she could be declared cured, but now it’s time for plan B and maybe plan C.
Losing T cells this early (this was her four month blood check) is NOT considered long enough persistence for a cure. Despite the fact that Lucy is showing no signs of leukemia right now, everyone involved agrees that she is not cured and we must seek curative treatment. Chemotherapy is not an option because her leukemia is way too aggressive. Seattle is willing to try a second dose of T cells for Lucy, but they have given us little hope for success. Every second infusion they have done has resulted in almost immediate rejection. None have shown persistence of any kind. BUT we are STILL GOING to try. We HOPE that CAR T cells can still be Lucy’s cure. We are asking for every prayer you can spare for this true miracle for Lucy. Success has to start somewhere, please God let it be with Lucy! If this doesn’t work, then Lucy must have a bone marrow transplant, and soon. She is in remission now, and the race against relapse begins now, because she can not have a transplant out of remission. This would be our last resort, but at the same time we are grateful for the option. We will never stop fighting.
Lucy will have surgery next week to have another central line placed. I (Kenda) will take Lucy to Seattle probably the week after next. We believe this will be a short trip, just a few weeks. We post this now because it’s happening fast, and it’s be best way to spread the word that our lives have come to a screeching halt (again), but to anyone who encounters Violet, please don’t mention anything, she does not know yet. She will be so very upset to hear that mom and Lucy will leave for weeks, and we don’t want her to dwell on it any longer than she has to.
A happy, tough, brave Lucy carrying her own infusion pump while she gets her weekly subcutaneous immunoglobulin. Supportive big sis is right by her side! I can’t stand the thought of parting these two.