On day 18 post transplant, Nora began grafting. Her ANC began climbing and she is beginning to head on her way to normal-ish. The problem with grafting—which we want— is the fear of graft vs. host disease. GVHD is when the donors cells attack Nora’s body. She has a rash which is covering her entire body and we are very concerned.
She had a skin biopsy and it was confirmed she has acute graft vs. host disease on her skin. We are treating it with steroids and steroid cream. The rash wasn’t only because of the GVHD she also had an allergy to ambisome an antifungal and her body also stopped sweating. Once we took her off ambisome slathered her with steroids and she finally sweat, the rash seems to be under control.
But we have two new issues. First, Nora has extremely high blood pressure most likely from the cyclosporine (immunosuppressant) heparin (blood thinner) lasik (diuretic) and Zofran (anti nausea) which make her electrolytes wonky. Sometimes she loses potassium, sometimes too much, same with magnesium and glucose. The team is working on getting the combination right.
Our other issue is depression. Nora is having a very hard time emotionally. Benedryl if used daily will block your pleasure receptors in your brain. Same with Ativan an anti nausea medicine. We have taken her off the Ativan and have reduced Benedryl to only when she gets blood product (every three days). That should help along with adding an anti nausea medicine that also helps with anxiety to stop her mood swings from angry to sobbing. Hopefully by next week she will be more like herself. She really misses her friends and family.
The good new is that she is making some blood. Her white cells and ANC are both really high and they have stopped the medicine to stimulate their growth. She is doing it on her own. She now needs to raise her red blood and platelets into the normal range so we can begin to discuss when we can leave the hospital and go to the Ronald McDonald house.
The itching has subsided so we hope to begin homeschooling again this week. Her brother Arik is finally allowed to come and visit as long as he wears his isolation gear and is well. That hopefully will brighten her spirits.
We cannot thank enough the good people who take their time to help us and our family. The generous outpouring of love is so overwhelming. So many people give of themselves, their time and money, some we have never even met. It is such a gift to know the world is so full of such warm and giving people. We always had this immature feeling that asking for help is a weakness, but recently have learned that it is truly a blessing. We get to experience this love and because of our “weakness” others are able to give their love. Which is everything! We never truly understood the Beatitudes until experiencing this… The meek surely do inherit the earth… In an outpouring of love. What could be better!
We truly are humbled. Thank you. We love you all.