Our trip to KC was wonderfully uneventful. Lucy’s visit to clinic went well, labs looked great. The g tube button replacement was pretty gross, but went smoothly … at least I’m told that’s they way it is supposed to go (gag!). We are still treating grenuloma tissue at the site but thankfully it isn’t painful to Lucy. We have also been back to clinic here in St. Louis and Lucy has received great lab results there as well. Her numbers all look great! Her port acess is getting harder and harder, though. She is anticipating it now, and, sadly, is scared to go to clinic now because she knows she will get a big stick (that needle is BIG!). Violet really hates this part too; it’s hard for her to be in the room when Lucy is scared and hurting.
When we were in KC Dr. M suggested stopping the water overnight for a few days and see how her labs looked, to make sure she wasn’t getting dehydrated or showing signs of strain on her kidneys or anything. Her labs looked great so we were very glad to move the feeding pump and pole away from her bed and let her sleep with no tubies hooked up! Unfortunately this didn’t last long. Lucy has finished her steroid wean, which means the “excellent appetite” honeymoon is over. In addition to a very noticeable drop in appetite, Lucy has lost weight. Dr. M warned us to expect this when she stopped steroids, and Dr. B agrees that her poor appetite now is much more typical at this poit post-transplant, and she was not concerned yet about her weight loss. I’m doing my best to keep a food diary (not easy to calculate “one bite of egg white”), but as the chef and server of the food and drinks in the house it is obvious thst Lucy is barely eating, and drinking even less than she was when she was on full water feeds overnight. I met with the dietician in STL and we will probably come up with a more specific plan for Lucy next week, but for now I have put her back on water overnight and a few hours of food. It’s not much, because I don’t want to discourage her eating on her own, but I know she is eating only a fraction of the calories she needs, and it’s far from a balanced diet. Lucy has the feeding tube and I have the Liquid Hope, so I’m going to use them. I am also hoping that having something in her stomach with her stack of morning meds might help her feel better. Several mornings she has told me she feels like throwing up. Sometimes I feel like throwing up too when I push all those meds in her g tube! Now that she is off steroids she has started her tacro wean, so other meds will continue to drop off as she comes off the immune suppressants.
Thank you for all your thoughts and prayers, Lucy is feeling great and we are all happy to be home together . Lucy even says it once and a while out of the blue “mom, I’m glad to be at home”. The cabin fever hasn’t even been so bad because we have been very busy unpacking, organizing and cleaning. Josh did his chores and had the house vacuumed, dusted, mopped and scrubbed when we got home (we can’t deep clean with Lucy in the room), but the girls are like tornados of destruction when they play with their toys. They were so happy to see the playroom; it was a disaster in about five minutes.
The day before we left Kansas City, Lucy went into surgery to have her broviac line removed and a bone marrow aspirate. With her dangling tubies gone she has been able to be as wild and rowdy as her sister; actually she is usually the instigator! Lucy still has a central line, it is a port under her skin. With no external parts to it, a port is much better for day to day living, but now Lucy has to get a “pokey” to acess her line for blood draws and infusions, so that part isn’t fun. Great news from the BMA – her marrow showed no evidence of disease, and she is 99% donor blood! We hope getting Lucy off the immunosuppressants will bump that number to 100%, but 99% is still really good. Lucy will step down on her dose of steroids on Friday for one more week, then she is done! After that Dr.M will begin weaning her immunosuppressant, tacrolimus.
The girls and I are off on a road trip to KC tomorrow for Lucy’s appointment at Children’s Mercy. She has been going to clinic here in St. Louis at Cardinal Glennon and it has been fantastic seeing our friends there again! I know our KC friends will be just as pleased with her progress as St. Louis is. Lucy is scheduled to get an infusion of infliximab in KC for her GVHD, but I have to say, her skin looks fantastic! Besides a few small spots, her rash is totally gone! We will also go to the surgery clinic to change her Mic Key button. I have to admit, this creeps me out so bad! Her gastric tube (the Mic Key button) has to be changed every 3 months. I’m told people do this at home but I am freaked at the thought of seeing the hole in her belly! I’m also worried it doesn’t look so great. She has had a bit of grenuloma tissue around her site, which we treated with steroid cream, but it came right back. I’m told it is caused by moisture and movement. The moisture part I do my best to control, but the movement …. impossible! Lucy runs, wrestles, rolls, jumps and bounces around. It’s benefits far outweigh the downfalls so we will do what we have to to keep the g tube in good shape.
Good morning Lucy! These are her morning medications. Most are repeated at night, and a few mid day as well. Thank God for the g tube! With the exception of one, they all go in her “magic button” instead of by mouth, some while she is asleep. She also gets continuous water through her g tube while she sleeps at night to protect her kidneys from all this. Thankful her kidney and liver labs always look great.
It was a tough decision to pull Violet out of school to keep her isolated during Lucy’s transplant and this vulnerable time afterwards, for Lucy’s protection.Violet loves her friends and teachers and I was really worried about keeping her busy at home. So far, however, we are all doing great. The girls play together all day, it is really sweet! There is some bickering, for sure, but now I’m nervous for how sad Lucy will be when Violet goes back to school!
Lucy got a big girl bed! After months away from her crib I think Lucy wondered why we were trying to make her sleep in a cage. Despite having lots of energy during the day, she still needs, and is eager for, her long daily nap. I actually wake her after 2.5 hours.
Yep, that blur is Lucy, a familiar sight in the house.
After just shy of three months spent on the western side of the state, Lucy, Mom and Violet are finally coming home! In fact, by the time most of you read this, they will already be re-acclimating themselves to our little South City castle.
When visiting with Lucy over the past few weekends, she repeatedly told me she wanted to go to St. Louis. And when I asked her what she was most excited to see in St. Louis, she thought about it for a second and responded with “my room!”. During our nightly Facetime sessions, Lucy and Violet’s favorite part was letting me take them on a virtual tour of our house, with the highlight being each of their bedrooms.
It’s not that the girls were unhappy staying at Grandma’s house this past month (and to Grandma we are extremely grateful for serving as our Kansas City extended stay hotel for the last 90 days), and it’s not like there are some flashy, exciting toys waiting for them in St. Louis. It’s just that they both wanted to return to some level of normalcy, even if its as simple as being able to walk into their bedrooms. That such a small thing was a big deal for them was pretty sound evidence that they truly missed home.
So today is undoubtedly a happy day for Lucy and for the whole family. She’s still receiving ample doses of medicine every day, will still be under germaphobic house arrest until we’re safely off immunosuppresants and she will be a regular visitor at Cardinal Glennon’s clinic for the foreseeable future, so we’re not totally back to normal, but at least the whole gang is together in St. Louis. (actually, all of that sounds pretty normal in our house)
Knowing how many people are following Lucy’s treatment and how hard it is to adequately capture the day-to-day experience of a stem cell transplant in the form of blog posts,we put together a video – similar to the one we did for Seattle – documenting the three months she spent in Kansas City. It was finished a week or so ago, but I was afraid to jinx their return home, so we waited until today to let everyone see get a peak into Lucy’s latest adventure…