And.... It's BA-ACK...

    So I guess I spoke too soon in sharing or celebrating Sam's apparent improved colitis. This week she unfortunately returned to the diarrhea, stomach pains, nausea, and vomiting. We have started her on a new medication and will see on Monday what they say. Unfortunately, it seems this is most likely something we will be living with "off and on" for awhile. The other factor we are considering is her PEG tube is "due" to be replaced. This typically takes place every three months or so. It is complicated because Sam doesn't have the more typical type of tube used today that is more easily replaced. It can technically be down without anesthesia but it is not pleasant for anyone and I think the docs would prefer to "piggy-back" it into another procedure if possible. Her transplant doc mentioned another lower endoscopy in two weeks to one month if the colitis continues, so we will have to factor in the pros and cons to our options with this one like everything else.

     This Monday Sam will be "due" for Pentamadine which is her once per month injection that helps protect her from specific strands of potentially fatal pneumonia. The next week, she will most likely need IVIG which helps boost her passive immunity again. These will both mean longer clinic visits. We will keep her PICC line (central line in her arm) until she no longer needs these sort of injections/transfusions and clinic visits/blood counts are less frequent (1-2 per month instead of weekly). Like everything, this has pros and cons. Her central line allows for no "pricks" and digging around in veins every time she requires IV medication, or labs, but on the other hand it requires daily cleaning and heparin flushing at home and can not ever get wet which obviously poses challenges in bathing and eliminates swimming/water table play etc. It also requires the weekly cap and dressing changes which are very painful for Sam and potentially poses a risk of infection having an open line running to her systemic blood supply. In a way we can't wait for these things to be "out of Sam," but on the other hand, we are terrified of doing it "too soon" only to have a road bump creep up and have to surgically insert new lines if needed.

     Some people have asked me to better explain why Sam still can't do many things until one year post transplant. My best analogy is that she has a "brand new" immune system like a newborn baby that is still learning how to work properly. Only after a minimum year to 18months post transplant, will she will begin the process of complete re-vaccination. This is a VERY complicated process based on what her body can tolerate at the time and which vaccines can safely be given, but overall like a newborn, we will be starting from scratch. The second element in this equation is that Sam will remain on immuno-suppressant medication (cyclosporine) to avoid GVHD and graft rejection that leaves her vulnerable to many common illnesses/infections until at least 12 months post transplant as well.

    The vaccination issue scares me as she will technically be three and ready to start Pre-School before she would be able to be vaccinated. Knowing that today many parents are choosing to not fully vaccinate their children or on a delayed schedule, but not having any right or knowledge of WHO or IF Sam will come into contact with any of these kids will definitely factor into our decision-making. I always pretty much "stayed out" of this debate as we personally decided to fully vaccinate both kids, I felt that each family was entitled to their own decision. While I still feel this way on an intellectual level, on a more emotional one, I have to be honest that I wish that immuno-compromised kids like Sam who have no choice but to rely on "herd immunity" factored into the discussion/debate more overall. I know this Fall, our family's view of the "flu shot" will certainly be different as we will all be vaccinated less for "our own sake" and more for Sam's and all those we see weekly on the 18th floor  of Lurie's Children's hospital fighting a bigger battle just like her.