DAY +52! Can you believe it’s been 52 days since the transplant? It’s also been awhile since I’ve been on my blog with any status updates, but quite frankly it’s difficult to write anything because things change around here daily…sometimes even hourly. I do want to keep track of everything that is happening, so I guess even a one sentence update will help me remember what has transpired. Who knows, if you are a fellow BMT patient/parent reading this, perhaps it will help you as well. No two BMT’s are alike, but you’ll get the gist of a day in the life of a patient and their family.
First off let me tell you that during this stage we are waiting, watching and treating Graft Versus Host Disease (GVHD and/or GVH as I will refer to). Even though the engraftment has occurred and we are at 100% donor cells, JT’s T-cells (a type of white blood cell) still recognize Sydney’s cells as being “foreign” so to speak. When this happens, her newly transplanted cells attack JT’s body. It can show up in multiple areas such as the abdomen, the skin, the eyes, the lungs and the liver. It can cause fever, diarrhea, cramping, vomiting, weight loss, rashes, jaundice, hair loss, dry eyes & mouth, hepatitis, lung disorders and digestive track disorders to name a few.
There are two types of GVH. Acute, this usually happens with in the first 100 days of transplant and Chronic which usually starts more than 3 months after transplant. In the BMT world, we often hear how important it is to make it to Day +100. Rates of GVH vary between 30-40% in JT’s “related donor” category. He continues to receive multiple drugs that suppress his immune system and hopefully reduces the chance (or severity) of GVHD. Our prayer is for JT not to have GVHD, either Acute or Chronic.
The standard course of first line treatment would be to prescribe Prednisone, a steroid, for him and because JT is a Type 1 Diabetic as well, we have experience with the horrible side affects it causes not only physically & mentally, but to his insulin levels as well. In the case of Chronic GVD, you’re talking potentially a lifelong battle using this drug and the immunosuppressive drugs he takes now. These later drugs are what cause him to limit his visitors, wearing a mask outdoors, no restaurant food, no fresh fruits or vegetables, no public school, etc, etc, etc. The all important date of Day +100 is typically when the Doctors will begin to wean him off of these. I suppose, that is, if it does not become Chronic.
Having said all that and referring back to the first paragraph, things change daily…sometimes hourly. In a nut shell, he continues to have “gut” issues and we are watching carefully and treating with various medicines. We were warned that we may have to be admitted this week for a GI scope & biopsy, but managed to postpone any testing since he has been stable this week and warding off the vomiting and constipation. He also complained of some eye pain and is scheduled to have a tear duct test next Wednesday to rule out GVH. Another problem he is experiencing is bone/muscle pain in his legs. Today we were going to see the physical therapist, but when we got his blood cultures back, his ANC counts made a huge jump and we think it may be pain caused by his bone marrow growing and not GVH (thank you Lord). We’ve also made numerous changes to the medicines over the last few weeks based upon his blood results. It’s amazing how fine tuned everything is and we are grateful to have alternatives when something doesn’t quite work they way they want it to. I can’t even imagine what it’s like to get a degree in hematology, but I continue to pretend that I am one myself!
We are extremely blessed to have been able to manage all of this from home over the last three weeks. The majority of transplant patients follow up with an extended stay at the local Ronald McDonald House. We managed to convince everyone how responsible we are (by pretending I’m a Hematologist of course) and they allowed us to come home instead. We began with 3 clinic visits a week and last week we were moved to twice a week, Tuesdays and Fridays. At each visit which lasts 2 to 3 hours, they take his vitals to monitor any changes to blood pressure, weight, things of that nature. Did I mention he is currently on blood pressure medication because that is one of the side effects of the other meds! A vicious circle huh? His weight is holding steady, he has an appetite and is eating which is good (and gives us a good vibe for the potential GVH in the digestive system). During the clinic, they also draw blood through his central line and we generally receive the results within a half hour. Based on blood counts and chemistry panels, the BMT doctor makes changes to his medicine dosages. While at home, we watch for signs of illness and infection. I change his central line dressings weekly and flush his lines with heparin every other day. Any fever would be cause for an emergency along with an overnight stay back in the BMT unit for a hefty dose of antibiotics. Knock on wood, we have not had to go that route yet, but plenty of our “BMT friends” who we’ve remained in contact have…more than once. I imagine fever is quite scary for the parents as infection at this stage can be a very life threatening occurrence. Like I said, we are extremely blessed.
A long but overdue update my friends. I think I will try to write a little something after each clinic visit from now on while it’s still fresh in my mind and keep these entries a little less wordy. As always, we thank each and every one of you who continue to follow our journey and pray for us. We appreciate you more than you will ever know!
xo Sabrina
