Aiden is 100%

Another long wait, but it's been a great couple of weeks, for the most part.

We'd like to start with AMAZING news, Aiden is 100% donor marrow. This is the best news possible. Although this provides no guarantees, it does make it less likely for Aiden's original marrow to produce Leukemia. We actually received this news with the results from his bone marrow biopsy at day 30 and neglected to include in our last post.

We spend hours in clinic each week on Tuesdays and Fridays. Always checking labs and still trying to regulate his anti-rejection medicine. Levels remain high, but it's been a safety net as we taper steroids. Higher levels of the anit-rejection medicine helps keep the new marrow controlled, hoping to prevent a heavy onset of Graft vs Host (GVH). The steroids were started when the GVH came on strong day 8 post transplant. He was on a heavy dose for 14 days and has been tapering for the past 2 months. Since the taper, his appetite continues to minimize. In fact, he's barely eating at all these days. The doctors say it's normal and should be what we expect for a while. Unfortunately, it doesn't feel good to see him go an entire day with no form of nutrition.

On Tuesday, 2/05 Aiden had his second of four post-transplant spinal taps. They check the spinal fluid for any signs of Leukemia, and have found none. They also push 1/2 dose chemotherapy into his spine as a precaution. Although Aiden has never tested positive for Leukemia in his spinal fluid, it's a common place for it to hide. So even after transplant it's important to treat with a lower dose to help prevent any new growth.

On Tuesday, 2/12 Aiden developed a fever. This time, a fever that reached 102 quickly. He was sleeping, and to the touch felt extremely warm. Initially, it was a low grade fever. We called the hospital, and just minutes later his fever was elevated. It was after hours, so to the ER we went. Cultures were drawn and a round an antibiotic administered, but after several hours we were sent home. We worried he should be admitted, but they assured us he didn't show signs to be concerned. His doctors called first thing in the morning asking we bring Aiden to clinic so they could put their eyes on him. His fevers were still present, and we expected they would admit for observation. We were right, we spent the next 48 hours in the hospital. Spending holidays in the hospital has become our norm, fortunately Aiden really enjoys being there. With no exposure to the outside world, being admitted is like a mini vacation. In fact, he was heartbroken when they sent us home from the ER, wanting to be admitted.

On Monday, 2/18 we went to clinic a day early. Anti-rejection levels were still high at discharge, and they didn't want to wait the extra day to recheck. We had made several calls to the "Hotline", keeping them abreast of his condition. Aiden had developed many "new" symptoms over the weekend, so there was a lot to report. He'd stopped eating completely, had terrible diarrhea and was vomiting with each round of meds. His doctors believed he had some kind of stomach virus/bacteria, possibly what caused the fevers days before. C-Diff looked like the most likely culprit, but all tests have been negative.

The following day, back to clinic for counts and his third of four post-transplant spinal taps with chemo. The call came late in the day, Aiden's spinal fluid remains free of Leukemia. God is listening, please don't slow your prayers.

Today is day 71, and we spent 5 hours in clinic. Aiden still has a bad case of diarrhea and is experiencing terrible stomach cramps. His medical team asked we come to clinic early today so they could hook him to fluids for a couple of hours. His kidney functions have been elevated and they worried he was showing signs of dehydration from his output. They drew labs and started fluids first thing this morning. Fortunately, his numbers prove he is taking care of himself. His kidney numbers, and all others, were exceptional. They stopped fluids and eliminated the possibility of administering fluids from home for the weekend. He certainly does not feel well, but he IS fighting with all his might.

We will watch and wait through the weekend, tracking his input and output. Unfortunately, these symptoms may be GVH. in his stomach, which will require a biopsy if his condition gets worse.

These days, nothing is black or white. Everything comes in shades of gray, which causes anxiety and doubt. How do we know when it's past the point of observation? Honestly, we don't know. We trust in our gut, and pray long and hard for guidance.

Our hearts are heavy, we miss knowing what he has lost. It's been nearly 8 months since he's played with a child. He misses the simple pleasure of playing outside. He wants to run, but is hesitant to take a few steps. Time and tragedy have taken a toll. He's been confined, in a zip-lock for what seems like forever. He's showing signs of missing his past, and yet smiling through it. We cannot wait until the day comes we can do what most kids wouldn't know is a pleasure. It's right around the corner, and we continue to count the days

For now, please keep praying!

News Channel 2: Aiden's Story