We are back from Seattle! Overall, everything went perfectly. After Lucy’s initial consultation appointment and first meeting with Dr. Gardner, we had some time to enjoy Seattle. So we did! We spent a lot of time outside, when it wasn’t raining which was kind of a lot. The bulk of the medical miracle part was in the lat few days if the trip, and thank you for the prayers because it all went better than we could have hoped!
Surgery went well on Tuesday. It took a bit longer than expected but the results were good. I had to be called back to recovery to calm my little screamer, but this is typical. Lucy always wakes up very well from anesthesia … very well and very feisty. As every recovery nurse has said – “she is a fighter, that’s good!”. The catheter was a pretty big double lumen place in her neck and exited just below her collarbone. We were terrified to take her home overnight, afraid she would pull at it, but she did amazing! It didn’t even seem to cause her much pain – the tape over her neck and shoulder was the only part that bothered her, and not much.
Thankfully we reported to the hospital bright and early for apherisis. The doctor ordered IV meds to knock her out so she could sleep through the 3 to 5 hour process, but the nurse and I decided to play it by ear, afraid it wouldn’t last and she would wake up too early. She was hooked to a huge machine the whole time and couldn’t leave the bed, so we didn’t want to deal with a groggy/cranky or well rested/rambunctious toddler. Lucy was amazing, again. She charmed all the nurses, being chatty and cooperative and sitting perfectly still on the bed eating cashews and watching Curious George. After about an hour or so she curled up with me and decided to take a long nap. And she slept hard, because it was really loud in the clinic and the nurses running the apherisis had to take a blood sample every 30 minutes. It took about 3 hours and Lucy hopped off the table like nothing happened when it was over. Kids are amazing.
The next and final step for “Seattle part one” was removal of the apherisis line. The doctor who put the line in warned us that this would be awful. It is not done with anesthesia because it isn’t necessarily painful to pull out, but kids do NOT like the process. There are no stitches so he has to hold pressure on the vein (in the neck area!) for 10 minutes; an eternity if the toddler does not want to do it. But again …. Lucy amazed us all. We gave her some pain meds ahead of time and distracted her with the iPad. The doctor was very gentle removing the fresh tape from her neck/chest/shoulder, and let her stay in dad’s arms the whole time. Lucy barely flinched, she was calm, quiet and actually pretty entertaining.
This is it – what they called “the product”. The brilliant scientists at the Ben Towne Center, the lab where Lucy’s T cells were sent, will engineer this stuff into cancer fighting miracle cells!! Thank you brilliant scientists. Grow good T cells!
If Lucy was a rock star then Violet was the opening act that makes you wonder “why not the headliner?”. The last two days were very long and not very fun at the hospital. When Lucy is. NPO (no food/drink) before surgery we are all NPO. We can’t/won’t eat or drink in front of her and actually we can’t even talk about it! Every nurse we met was so nice, but it’s just not the same as cardinal Glennon where all our nurses know Violet’s name and take her off to get Popsicles, snacks and toys. There were some snacks, a Popsicle and really great playroom just for siblings, but it was still not the most fun place for a four year old. Violet was patient (for the most part) and helpful with her sister. I’m sure it was kind of scary at times, but with the exception of the loud apherisis machine, Violet didn’t flinch. She saw a LOT of blood, and a new protrusion from her sister’s body, but as long as we got to go to the beach (several, actually) it was vacation to her!
What a clash of old school and cutting edge … Sometimes old traditions are still the best remedy. It took a simple sucker reward (ok, maybe two) to calm our rambunctious toddler at clinic today. Surgery tomorrow then T cell collection on Wednesday. Here it begins! Dear Lord, please be with our Responder!
Well we made it to Seattle!! The flight went pretty well, actually! Even thought it was well past bedtime in St. Louis, the girls decided to sleep for only the last 20 minute of our four hour flight, wait, 3.5 hours, we got in early! But absolutely no meltdowns, and really that is all we could hope for! Thanks to the kindness of many strangers along the way we managed to wrangle our car seats, luggage and kids through a very busy Seattle airport and to the rental car. Another major blessing; Lucy decided to agree to wear her face mask, for the first time ever!
After a late night we spent most of the day at Seattle Children’s hospital today. We met Dr. G today who is not only doing some amazing, ground breaking things for kids with cancer, but is very nice and down to earth. She also mentioned how great our Dr. B has been in getting Lucy’s medical records to her, so big points there! The visit was easy and quick. Just labs (which were looked great!) and meeting the good doctor. The hospital is huge, but we found our way with little trouble. As soon as we walked in the door after our appointment to our Seattle “home” Josh got a call that we needed to go back. Apparently the ECHO of Lucy’s heart that was done in St. Louis didn’t have the measurements that Seattle wanted so it needed to be done again. We had to rush straight back to make our last minute appointment, so we did. We got the same front row parking space, they called us back right away, and Lucy snuggled up with me and stayed perfectly still for the whole ultrasound which lasted only about 25 minutes instead of a potential 40 minutes. Violet and Josh also sat back and enjoyed the movie that our kind technician put on for us. With the lights out it kind if felt like the family was out at the movies!
We have rented a basement apartment in a private home while we are here, and though it has only been 24 (busy) hours, it is perfect. It’s close to the hospital and our hosts have put a lot of thought into every detail, including toys for kids! We are feeling glad to have such generous friends and family who donated to the fundraisers for Lucy last year and have given to us just as generously again since her relapse. It is so great to have space for the girls to play and a real kitchen to cook in and hold all our snacks! There was that teeny tiny glimmer of doubt in my head just before we left saying “are we really doing this? Dragging our young kids 1,900 miles for a treatment still in trials?”. But then … we received an anonymous donation in the mail from a member of our church … and some very kind friends dropped off a very, very, generous donation for Lucy. And I thought – wow, they believe in us and in Lucy. Heck yeah, we are doing the right thing! And so far, things have gone so smoothly, we are feeling very lucky!
Speaking of luck, it is very fitting that Lucy’s first appointment in this exciting journey happens to be on St. Patricks day. I immediately texted my friend Kelly Pimmle about it. She and her husband Joe lost their sweet, precious baby Jack (who they nicknamed their little leprechaun) to this horrible disease on July 2014. We joined forces with Jack’s Pack (we got your back Jack!) last fall to raise money for our local chapter of the LLS to support this exact type of ground breaking research that we pray will save Lucy’s life. At the time we were thrilled and relieved that Lucy had just finished treatment and hoping we would never need it. So when a friend wished me the “luck of the Irish” on our appointment today I thought “nah it’s Jack!” Kelly and I are excited to support the amazing, ambitious and determined Mari Barringer in her quest for a cure via the LLS Man Woman of the Year campaign. Unfortunately, since Lucy’s relapse, I am really a (very) silent partner in this campaign, but the mission is very, very personal to us. Please, follow the Facebook page Fourth is for Luck, and for goodness sake, fill out a March Madness bracket, you know you have to have to have more than one, and this one is for a great cause – do it here.
As I watched Lucy clutch the Ernie doll that my dad gave her the last time he visited St. Louis last summer before he died from this evil jerk cancer, I know that he (and so many others) is with her too. He was waiting for a clinical trial when the cancer took over and medical science today couldn’t keep up – we just hope and pray that it will for Lucy!
Lucy had a long day at clinic today. She had a lumbar puncture with chemo and bone marrow aspirate under sedation, then back to clinic for IVIG and Pentamadine infusions. I am reminded today of God’s answers to little prayers. We have been asking for some big ones, but despite the long, busy day, it went very smoothly. A big thanks to nurse Brittanie and IV Benadryl!
Lucy got all juiced up for our big trip, I knew Dr. B wouldn’t have it any other way. And it’s a good thing we have taken every precaution that we can because Lucy was denied a medical flight to Seattle, so we will have to fly commercial, eek! We will try our best to make Lucy wear a mask (yeah, right!) and steer clear of visibly sick people. Wish us luck!
Meanwhile, the 24 hour infusion continues at home, and pleasantly I might add. Lucy is doing great with her little backpack, and the only noticeable side effect has been her overwhelming craving for salty snacks. I really hope that when we stop the blinatumomab before our trip she starts eating better. Lucy’s current diet of chips, chips and more chips is beginning to make ME sick, and I love chips!
Next report will be from Seattle! Thanks for all the love, support and prayers!
Lucy is so much more aware of everything that is happening now. She now says “no mehcine (medicine)!”, “no flush!” and “ow!” For anything that she just doesn’t like. Here she is giving “raffy” his “mehcine”.
Lucy has just finished the first 48 hours of this new antibody drug, and so far so good! It was a little rocky the first night, but it’s not clear if it was this drug or the two doses of steroids that she had to take before the infusion began. There have been no major side effects, all her vital signs are good, and we don’t even notice any minor effects, thank God! I was too nervous about the idea of a constant infusion to truly appreciate this – but this is absolutely incredible. This new therapy is replacing some pretty nasty chemotherapies which cause the painful and miserable side effects which lead to more medications and interventions. This is how I wish all cancer treatment was.
A new bag needs to be hung every 48 hours, which is a good thing because this means the bag is small. I was worried about how much weight she would have to drag around at home. Although the infusion cycle is 28 days, Lucy will be stopping early for her trip to Seattle.
We are still waiting for confirmation, but it looks like we will have to be in Seattle for Lucy’s consultation appointment on March 17th and will be able to go home March 26th. The second trip will be much longer, six to eight weeks. Luckily we get to come home for four to six weeks in between, so we will have a bit more time to plan. It looks doubtful that we will be able to get Lucy on a medical flight. Lucy won’t be on the infusion when we travel, but her immune system is very weak following the heavy month of chemo she just had, which is why we hoped she would qualify. Unfortunately almost all of the small charity flights are small airplanes which can not travel as far as Seattle; our wonderful social worker here at Glennon has done days of research on this. Taking her on a long commercial flight is not ideal, but we will do whatever we have to. Seattle here we come!
Just hanging out. Violet can’t come back into this room, because it is under strict isolation for transplant patients. Luckily Lucy is allowed out since she is not on isolation. She had to stay on constant monitors (which means in the room) for the first 24 hours. We are glad that is over.