Sunday, December 1, 2013

Executive Chef Xander

Good Evening,

Thanksgiving 2013, thankful to share a meal at home
We hope you all had a lovely Thanksgiving. Ours was lovely, all things considered. Xander was released from the hospital in the afternoon, and all he wanted to do that afternoon was cook us Thanksgiving dinner. He was very happy to be able to make the dinner, and of course he got to eat some of it too.

As I mentioned before, he had been watching the Food Network station when he was unable to eat. This inspired him to want to cook, and Dr. Yanik was so happy to let him go home to be able to Give Back to his family. Dr. Yanik wanted to hear all about the Thanksgiving meal and how it turned out. He told Xander he would be happy to give him a recommendation to an upscale culinary school on the East Coast if he wanted to become a Chef. In addition, Dr. Yanik commented that he was now a "Xander Salsitz Fan" even more than before!

Xander's Thanksgiving Dinner Video

Dr. Yanik has such a nice bedside manner. He takes the time to sit down with Xander and talk about the current condition and plans for moving forward. He told us that he comes in with a fresh mind everyday to learn about Xander's immediate condition and what changes to his medications need to be made. Xander continues to suffer from GvHD of the gut. His gut was so bad when he was admitted that he was Grade IV+ GvHD. During this most previous week when he was down to Grade I GvHD, we were working to get him on more oral medications (oral medications lead to going home). Well, unfortunately, he was not absorbing the medications properly and his skin started to flare with GvHD (for those of you that remember, he had this issue immediately after transplant too).
Dr. Yanik's drawing of Gut GvHD
Xander has 'Intermediate' now

So, one thing leads to another, and he is now back on IV Metholprednisone and Tacrolimus. Both of these drugs are the long term ones that help control the GvHD symptoms and he wasn't absorbing them properly, so he his symptoms and pain got worse again. We are in about the third day of trying to get everything back under control. The Tacrolimus level will be measured about every 3-4 days (a test that is done here at the UofM Lab), so they can adjust the amount he is receiving to make it a therapeutic dose. He is currently at 32mg of Metholprednisone per day, that's about 1mg/kg.

Xander has been eating a very limited diet, but at least it is better than nothing!
Chicken Broth
Rice Crackers
Sweet Potatoes
Hard Boiled Eggs
Decaf Tea

He takes these oral supplements:
Guar Gum (helps to form bowel movements)
L-Glutamine (helps the gut heal)
R-ALA (helps maintain healthy glucose levels)
Fish Oil (helps support the heart and solid organs)
Probiotics (lots of them to help rebuild gut flora)
Vitamin K2 (helps protect the bones)
Vitamin E (helps heal tissues)
Glutathione (helps keep the liver functioning normally)

They have continued to test for all of the viruses that they can, including Cytomeagolvirus (CMV). In the most recent test this week, the level came back as detectable, but not measurable. This is great considering how much Metholprednisone he is receiving daily which suppresses his immune system.

We have been working hard to keep him entertained while sitting day in and day out in his room. The monotony would get to anyone. We try to keep level heads and keep things moving forward, but being in the hospital for this long is like being in a big pressure cooker - at some point, it has to vent! Xander has 3 electronic push buttons in his room - YES, NO and MAYBE (these are like the Staples Easy button). Thanks to the Theriot's, these have become a fun part of Xander's day, always bringing a smile! He loves to play with Lego creations, and even felt nice enough to let Molly play, after much convincing. Sometimes when we can't get together in the same room, we use facetime.

As we move along at what seems like a snail's pace, we are reminded of the last onset of GvHD and the amount of time we had to stay in the hospital. This creates a huge drain on the family unit and the family budget. Thankfully, we have clients that are patient and understand our situation - we can't thank you all enough! We have had such a wonderful community surrounding us and supporting us in many ways, including financially. As we start on the 8th week of admission, our funds are getting tight once again. We have decided to start an online fundraising campaign to support Xander's continued healing and help keep our family unit afloat. Please see the YouCaring site here if Xander's Journey inspires you: (there is also a link on the right side of Xan's website).

A huge thank you for your continued support, prayers and smiles,


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