It has been way too long since I have posted, and I am so happy to say it is because life is so very normal now. I have started emailing Clara at an email address Alan set up for her a while back. I am marking milestones there now, telling her little stories about what she did that day or week, etc. It is my way of keeping a journal now, and it is nice to catalog the nuances of the day without sharing them with the public world.
Alan and I have discussed taking the blog down at some point and sharing it with her one day when she's older - IF she is interested. But for now, I still want to share big milestones with you in her medical developments and big life experiences/moments.
The biggest, most wonderful things have happened lately.
Clara is still having some mild Graft vs Host Disease that look like dry patches on skin and scaly, dry skin on her scalp. The doctors have decided they want that to completely go away before we taper her Prograf. When they first told us this a couple of visits ago (~7 weeks ago), it was really disheartening. We were hoping Clara would be without an NG for Thanksgiving and the baby's arrival. But the Doctor explained a little bit more that if we moved to fast, we would end up taking more steps back, and chronic GvHD would result in her having to take all of these multiple meds for much longer. Clara's GvHD is so minor that they thought we were probably looking at 2-3 months of staying where we are with her meds. They also told us that she is actually doing relatively well considering her high risk for GvHD - most kids are still quite immunosuppressed at this time with worse GvHD symptoms. That discussion helped us realize that 2-3 more months of an NG wasn't really that bad compared to what could end up being another year.
At our most recent visit, last Monday, we were on a high! We had discovered Saturday morning that Clara's NG had fallen out overnight. We were torn about putting it back in because she fell back asleep in our bed and we just couldn't bring ourselves to wake her up to torture her by replacing it. We debated about adjusting her meds schedule a bit so that she could sleep a little bit longer. When she did wake up, Alan decided (without telling me) that he would see if she would take her most critical med (the Prograf) by mouth. I thought he had just gone to change her diaper until he announced she had taken it! She didn't even fuss! So we decided we'd see if she'd take the rest of them and just replace the tube later if she didn't comply. Folks, not only did she take her meds, but by Saturday night, she nodded "yes" when I said it was time for meds and crawled right into Alan's lap to take them. So, our visit to the hospital on Monday - we were beaming with pride and loving seeing Clara's whole face! It no longer mattered that she was going to be on Prograf and all these other PO meds for a couple more months because Clara was happy to take them and, we didn't need the NG!
It was actually our first transitional visit because Clara's Oncology fellow saw her instead of the Bone Marrow Transplant nurse practitioner. After checking Clara physically and looking at her lab results, the fellow consulting the BMT attending to ask if Clara could stop taking one of the meds. The attending admitted there wasn't a strong argument for keeping it on her list of meds as it is normally only given for the first 100 days after transplant. This was the most incredible news! I was almost crying. It meant that instead of Clara having to take 9 meds spaced across 5 times throughout the day, she only has to take 6 meds split into 2 times a day. What an incredible gift to Clara! She was so compliant and now she was going to have to endure so much less! Plus, the med they were taking off (valacyclovir) was the largest of her meds; so, this was effectively reducing her total med volume by 2/3rds!
It has now been almost 9 months since Clara's transplant and almost 8 since she was discharged. Because the doctor's were lifting some of the restrictions on her isolation and taking away some of the meds, I dared to ask if she could go to the hospital for their annual Trick or Treat Trail throughout the hospital and if it was safe for her to go without her mask. The answer was yes! I was so excited for her to be able to enjoy it this year as she was too sick to even wear a costume of any kind last year. I wanted to show her off to the nurses who haven't seen her since she was 10 months old and have never seen her without an NG tube. She loves other kids and calls them "baby!" when she sees them. I just knew she would love all the excitement. We got to see several of our very favorite nurses, most of her doctors, her physical therapist, a fellow patient that is 4 months younger than Clara and diagnosed with leukemia at 2 months of age, lots of kids, and there was so much going on! All the units have tables set out in the hall of every floor and even the maintenance department sets up a haunted house. You should see the costumes the staff wear and even the parents are dressed up. It was a lot of commotion and a lot of fun to be a part of. It was also really scary for Alan and I as we have kept her completely away from ANYTHING REMOTELY crowded for almost her entire life. But, man, did she have fun. Alan put her down for a moment when two of the nurses had come out to see her. She wouldn't stop spinning. She got so many "oh how cute!"s from strangers. We got a couple of pictures, but this video is the best. I intended to take more pictures but keeping her safe and talking with whomever had come out of the unit to see her was quite exhausting. We stayed for about an hour and would have loved to have let her completely run around. The only time we really let her go free was when she decided to run down the hallway which happened to lead out to the car. It was perfect timing and her nurse practitioner and fellow were both running down the hall with her before we all said goodbye. I was so proud. I think we will put the costume on again this evening just because she seems to enjoy it so much.
Lots to be happy about!
