Lucy and I are back home! We have some very tough decisions to make, but since Lucy is doing well right now, we have been blessed with the luxury of some time to think, research, and consult. Lucy looks great, is eating, sleeping and playing well and showing no signs of illness, not even a sniffle. But still, we know better than to let our guard down, so Lucy is scheduled for a BMA on Wednesday and probably a PICC line replacement since her current line is being finicky.
We will have a plan soon, but first we will enjoy Halloween! Pictures of costumes coming soon, meanwhile some shots of what life looks like at our house. The silly sisters are so glad to be back together, playing, fighting and ganging up on Mom and Dad the way sisters should.
The second dose of T cells did not work, and we have to stay until next week.
Boo! Hiss! I can’t say we are surprised by the official failure report of the T cells. Lucy had no reaction whatsoever. She has a stronger reaction to Benadryl, seriously. We knew his was our Hail Mary pass all along, so now we dust ourselves off and move on. I am disappointed by this failure not just for Lucy but for every kid who needs this trial to work. The plan was new, and good, and I thought it would be super cool if Lucy were the “breakthrough” in achieving persistentence with a second dose. Dr. B has always encouraged us to think not just with our minds but with our hearts and to have no regrets, and we knew we had to try this, so we are still very glad we did.
The Seattle team wants Lucy to stay for day +28 labs/exam next week, and really, in the grand scheme of thigs, we are happy to do it. As I mentioned above, this is a very important clinical trial and we are so proud and honored that Lucy is a part of it. These few extra days in Seattle unfortunately remind me of the ultimate cost of this trip – splitting up our family for so many weeks. However, like Josh and Violet’s trip to visit us in Seattle, I can see the light at the end of the tunnel, and really, it has not been THAT long.
The next chapter in Lucy’s story now weighs a little heavier on Josh and I; we have a lot to discuss with Dr. B and each other (ever try to have any kind of productive phone conversation with a 2 and 5 yo around?). Lucy had a BMA and LP on Wednesday and both came back clean – she is still in remission, by the most sensative test, MRD, so I think we will give ourselves a few days of relaxation time at home, all together, in St. Louis before we think about the Beast (leukemia) again (as if we ever stop!).
Since Lucy’s immune system is out of “lockdown” territory, and she is feeling absolutely great, we have been focusing on enjoying our time in Seattle, and overcoming my unbelievably terrible sense of direction. Thank you smart phone GPS! We went to the Seattle Aquarium, and it just felt so good be to out. We had just gotten a taste of this life in St. Louis before we heard the bad news about T cells. We also have made several connections with new friends in Seattle. I met up with two families from the infant leukemia Facebook page that has been an amazing support group to us through this journey.
By far, the MOST fun was this weekend, was when Josh and Violet came to visit!! We have missed each other so much! It was a short weekend visit, which worried me at first; I thought maybe it would be harder on the girls to say goodbye, again. However, the first few days after Lucy and I left St. Louis, Violet started to cry at the end of every nightly FaceTime. Once the trip was booked, Violet had something to look forward to, and not seeing her burst into tears (at least not as intensely) everyday was worth the price of the plane tickets. Lucy and I dropped them off at the airport today and though they were very upset (Violet) and confused (Lucy) by our short time together, at least we know we will all be back together soon. But when…?
The test results for T cell presence in Lucy’s blood and marrow take a full week. When we are here for just five to six weeks this gets confusing, especially when the end date of our trip depends on test results. If Lucy shows no T cell persistence we may be able to go home this weekend. If she does show some persistence (come on T cells!!) we will go home next week. This feels like the longest rain delay, ever. Lucy and I have been here four weeks, but the latest information we have is the results from day +7 blood and bone marrow. Results are essentially unchanged from that unfortunate August blood draw which revealed that these miracle T cells have essentially left their post and quit. There is a very small presence of T cells, however, B cells are back. This means that the CAR T cells are not doing their job; lazy jerks! Heidi told me not to be discouraged, that day +7 is still very early. The lack of reaction from Lucy has us worried. However, as I mentioned above, I am trying to enjoy our time here. There is literally nothing I can do about this T cell business and Lucy thinks we are on vacation with her BFF Olga, so I will follow her lead.
My fellow toddler parents who know the Bubble Guppies … you know you just sang that line in your head! It is Monday night as I write this, the end of day +12 and there has been no fever, no nothing from Lucy as far as signs of illness. The fever watch is over, it’s just not going to happen this late. None of the tests checking for T cell presence in her blood or marrow are back yet, but it doesn’t look good, based on Lucy’s lack of reaction. We will keep hoping and praying for some T cell presence until we get the official results from the research lab. The “regular” lab results did bring good news about Lucy’s bone marrow – no sings of leukemia!
Last week’s labs also showed that Lucy’s counts were rebounding from the chemo. With counts on the upswing and the likelihood of a T Cell fever diminishing we felt safe venturing out further from the hospital. I wanted to take advantage of the rental car so we hit several parks over the weekend. Lucy and I met our new Seattle friends at an awesome park on Mercer Island – the drive itself was pretty incredible too, no scenery like that in Missouri! Lucy chose the biggest slide and went down it over and over again. Then we took our Russian friends to beautiful Alki beach on the other side of Seattle. They really loved the drive through downtown, there was lots of picture taking from the car as we drove by the skyscrapers.
The subject of this post is quite fitting for the last day of childhood cancer awareness month. I can’t speak for other types of childhood cancer, but for leukemia, sedation is a regular occurrence. Leukemia patients have dozens and dozens (I, personally, don’t keep count) of sedations for lumbar punctures and bone marrow biopsies. Little kids also need to be sedated for other procedures including MRI, CT, and radiation (which is often twice a day for several days in a row). The universal and inflexible rule of anesthesia is that the patient can have no food or drink by mouth for several hours prior to procedure, AKA “NPO”. This displeases Lucy, very much. Every nurse or doctor who sees her on procedure day asks where my little ray of sunshine has gone when they see the scowl on her face and then nod in complete understanding when I say “NPO”. Lucy doesn’t understand it so I can’t reason with her.
A late procedure time had me prepared for a rough day. Lucy had labs, then doctor visit, then procedure right in the middle of nap time – double whammy. Luckily, the IV nurse team was able to coordinate the PICC line dressing change with her sedation. She was still passed out cold, the perfect patient, through the whole thing. Unfortunately, nurses are human too and this one accidentally pulled her PICC line out – significantly. I watched in horror as her pinky finger hooked the line and suddenly it was over twice as long outside her flesh as it should be. I should have seen this coming, the bad luck began earlier; the blood draw did not go well either. Two nurses struggled to get her line to bleed. Lucy was fine, she didn’t feel a thing, but it was nerve wrackingbecause none of us in that room wanted to even think about the alternative – IV poke. So after what was, I’m sure, also a horrifying moment for the nurse doing the dressing change, we gathered our wits and Lucy had about 5 minutes to recover from sedation before I took her down to X-ray. The tech could not have been nicer, even though Lucy screamed and cried the whole way through. What a horrible wake up, poor thing. Back upstairs to wait for the doctor to check out the X-ray, and thank The Lord, the placement is still ok. And thanks Lisette who placed that line in St. Louis with room for error!
Because of the late procedure time (2:00 pm), it’s unlikely the bone marrow results (looking for T cells) will be in this week. I am still hoping and praying for a fever to show us some evidence of T cells. Tomorrow (Thursday) is day +8, when it all went down, “the fever”, five months ago. I consider it good luck that it is also Violet’s birthday.