Thursday, December 19, 2013

Little by little

It is the season of miracles.

I am still in awe that Xander continues to get better. The fact that he is surviving this bout of GVHD is a miracle. The fact that his kidneys repaired themselves in two days was a miracle. The fact that he can eat right now, is really, a miracle. The fact that I can make him dinner every night, is a miracle. The fact that we actually made it through 11 weeks and counting, is a miracle. The outpouring of support by our family, friends, clients, colleagues, and complete strangers, is a miracle. Your support of our fundraiser is a miracle!! A heartfelt thank you to all who have donated.

Here is the recap of the current situation: 12 weeks ago (thats 3 months!) Xander started having severe stomach pain and diarrhea. In hindsight, we believe that for the first 1-2 days, it was a stomach bug/pathogen of some kind. Then, because of the severe diarrhea, he was not absorbing the medications that he was taking, most importantly the Anti-GVHD meds, Prednisone/Hydricortisone and Tacrolimus. This made the GVHD flare in his body uncontrollably. He was admitted with Acute Kidney Disfunction and was extremely dehydrated and had lost 10 pounds. It took 2 days to get the results of the colonoscopy where they took samples to confirm the onset of GI-GVHD. They rated it off the scale, as extremely severe. This is when the villi in the gut are completely wiped out and the lower GI tract (in his case) becomes like a water pipe, smooth and inflamed. The sever inflammation causes the wasting of the body's water in a bad way... for him 4L a day of stool output (yes, liters). After increasing his Metholprednisone to 60mg (2mg/1kg) per day with no change in output, the Doctors decided he should have rATG to aid in suppressing his immune system. Unfortunately, this drug is very toxic, but he seems to have handled it well thus far, and it indeed has stopped the reaction.

We have had almost every attending physician in the transplant program round on us thus far. Currently we have Dr. Harris who is a bone marrow transplant recipient himself. He is very knowledgeable in the field and has a lot to offer in Xander's care. Just three days ago Xander had a small flare, and went up to 1.2L of output in one day. This was a HUGE change, in the wrong direction. We commend Dr. Harris for watching very closely and giving him a chance to heal on his own without increasing his Metholprednisone. Indeed it looks like he has turned around completely - and quickly! This is great news, so much so that I have to mention he had solid stools today! For those that we talk to on a daily basis, you know that this is like having a new baby! You just want to show it off (Okay, Aaron wants to show it off... but that is besides the point). We are so happy that Xander's gut is indeed healing. Now, to keep it healthy....

Xander receives almost 1 Billion probiotics a day. This is a pharmaceutical grade probiotic called VSL#3. You can read about it here. A shout out to Clark Pharmacy in Ann Arbor for having this every time I need to stock up. He continues to receive all of the "home meds" too. Most notably over the past 3 weeks, he has been receiving large quantities of L-Glutamine powder as a tea-concoction. The gut cannot heal without this amino acid and we are now seeing the huge benefits that this "home med" brings. We use the Vitamin Shoppe brand found here.

I've been wanting to post this fact, not specifically related to gut GVHD, that anyone using Tylenol needs to read this, a recent study about Tylenol and it's potential toxicity. We learned about the interaction of Tylenol on glutathione in the liver before Xander's last transplant, so as a result he has not had any Tylenol this year. A component that has been a very important part of Xander's liver health is that he receives Glutathione gel daily (we get this from Clark Pharmacy locally).

As for the rest of Xander's meds - they are pulling him completely off of Octreotide tomorrow. This is a big step, so we will wait three days without changing anything to see how he holds up. Soon thereafter we will perform an absorption test to attempt to measure how much medication he is absorbing through his gut and how much is passing through. I'll get the details of this when it happens.

In the meantime, we are all getting geared up for Christmas and New Year and Molly is really looking forward to going sledding and ice skating... and so am I. Spending time with Molly is always a joy, no matter what the season!

Xander had a very special gift presented to him this past weekend by his fans at Apple! I know you are out there... THANK YOU ALL so much for the outpouring of support! The new iPad is a true work of art.

Xander has gotten to escape from 7 East a couple of times, of course the only thing he wants to do is play with his dog, Hobbes - can you see those smiles? Makes my heart warm and fuzzy.

Sometimes he doesn't have to go far to get the bird's eye view of the sky. Looking out of the 7 East windows you are bound to see some of these Delta pilots flying by... maybe even in the bird suit!

Just before it snowed while it was still in the upper 30's, Xander got a chance to walk around the grounds and found they had recently put the lights up.

They also made a stop at the gallery:

Peace and Love to all of Xander's followers,



  1. Wonderful news! Thanks for sharing.... makes my holiday a bit brighter to know that Xander is on the mend!

  2. Love you so much Xander!

  3. Xan Man, we love you so much!!! It is so great to see you and speak to you on FaceTime.

    Love ya!