Day +100

Today is day +100. I'm not sure why, but I expected fireworks, marching bands, waves of relief, joy without end ... you get the picture. Well, day +100 was just like any other day. Alex woke up, had his medicine, I nagged him about drinking enough water all day - which he didn't; then he took his medicine again and went to bed.

Alex is off most of his medication. There are three he takes during the week, with a fourth one just on the weekends.

Tacrolimus: We tried to ween him down on this one two weeks ago. He started flaring up with a good-sized Graft-vs-Host Disease rash (GVHD), so we adjusted the levels. Until he is off this medication, he can't go back to school, or be in big crowds. It was disappointing that the first taper did not work, but we just need to be more patient. We will continue to tweak the dosage until his new immune system can tolerate the new body.

Acyclovir: This medication is given for about a year, so we have at least 250 more days of it twice a day. It is an anti-viral medication, all the other "anti" medications are completed (i.e. antibiotic, anti-fungal)

Magnesium: As long as Alex is on Tacrolimus, he will be on a Magnesium supplement (4 *huge* tablets twice a day).

Septra: This antibiotic is given as a preventative measure for a specific type of pneumonia that is common among patients with compromised immune systems. He will be on this medication for at least another six months.

The last Chimera test came back with good results. The lab tests two cell lines in the blood. The first cell line was 100% donor cells (yay!) The second cell line was at 94% donor cells. This is down slightly from last month. The doctors are going to try to see if Alex can tolerate a little bit of GVHD, so that the donor immune system can wipe out the last 6% of his original cells. This is quite common, and nothing to get to concerned over. A bone marrow aspiration was done on last Tuesday to check for leukemic cells in his marrow. The doctors don't expect to find any, and we won't know for sure until next week. The waiting is so hard.

Alex likes to say that there is a battle going on in his body. It is a good analogy. For all of you Doctor Who fans out there, Alex likes to picture himself "regenerating", which to me is the best analogy.

Alex - Regenerating

What day +100 really means, is that the likelihood of major complications statistically drops significantly for patients who make it this far after transplant. I am so happy to be at this point however, one thing that has become crystal clear to me is that statistics are just numbers, and we aren't guaranteed success.

I have had nightmares, of Alex just dropping dead as we walked through a store. These nightmares are awful - I wake up in tears, and go and give my boy a big hug. I have dreams where Alex's birth-mother tells me "why didn't you keep him safe?". I want this to be over. I want to be done. I want the Hickman line in his chest removed. I want his body to work so he can enjoy his life - without the cloud of cancer. Is that too much to ask?

Good News (Day +83)

I have not been very consistent with my posts lately. As an intelligent woman, I understand that coincidences happen but emotionally, it feels like if I post when things are good, something bad will happen.

So, after some intense internal dialogue with myself, I realize that this is silly, and I need to share whether things are good or bad.

Today, Alex had clinic, and his creatinine level (kidney function) was higher than expected, so we need to work with him on drinking more during the day. We have a pump, and fluids that we can give him at night - but we don't want to rely on it.

Alex has always been a "sipper" - he hasn't ever "chugged" anything. Getting him to drink close to 60 ounces a day is honestly exhausting. We have to be on him all day long.

The good news is that the doctors are starting to taper his Tacrolimus (which is the anti-rejection medication)! This means, that if all goes according to plan, in a few months, we can discuss going back to school!

I am beyond excited about this - it is a huge milestone, and to get to it before day +100 is amazing.

Now, I'm off to pester my son about drinking again!

A Rough Day For This Momma (Day +82)

Yesterday, I got up at 6am, and drove to a bread plant. You see, Doerenbecher Children's Hospital Foundation was having a fundraiser. We got 1 hour and 45 minutes to roll out, cut and cook 10lbs of sugar cookie dough. This is my fourth or fifth year attending this event, and it touched my heart deeply.

The previous day, I had heard about a girl up at Doerenbecher who lost her battle with her illness. She was a very sweet young girl, around Alex's age. The news hit me harder than I thought it would, and I ended up having horrible nightmares about Alex succumbing to cancer. It was awful. I think I only ended up sleeping about three hours. This intense sadness wrapped around me, and shook me to my core.

While driving to the Doerenbecher cookie bake, I was listening to the radio. Susan, who is one of the Child-life specialists up at the hospital, was on the radio, talking about another Doerenbecher fundraiser. Hearing her familiar voice flood the inside of my car, had me bursting into tears.

Once I got to the actual event, I looked around at all of the people, and had to choke back tears again. Last year was Alex's first time at the cookie bake. He was done with cancer, having taken his last chemo pill only a few days earlier. We had a blast.

This year, it was just me.

Alex couldn't join me, since he is still on medications that keep him immune system suppressed. He woke up in time to see me leave for the cookie bake, and his sad face at the window was just one more point of sorrow for me.

I decided to only do 5 lbs of dough there, and came home with the rest of the dough to cook with Alex and Tessa. While I was decorating the cookies, Alex looked at me and said "It's ok, I'll go next year - and if my cancer comes back, and I can't go, we'll fight it off again!"

I smiled to hide the tears, kissed his head and held him tight.