Wednesday, June 5, 2013

The path is filled with obstacles

Good Evening,

We're on the path. It's a nice wide path. Good gravel base. The very first part of the journey seemed to go smoothly. We celebrated. Then the first major obstacle, then the second, third, etc... Here we are at obstacle number.... I've lost count already. We're only a month in.

Warning: more blood ahead

Today we discovered blood in Xander's urine and stool. First, let's discuss the urine. Looks like BK Virus, smells like BK Virus, every person in the room says it's the right time for BK Virus, it's probably BK Virus. Won't have the results back on that until tomorrow at the earliest. Not really a huge surprise that another virus would flare up, and it can be serious if it gets out of control and it can do that quickly. Not sure at this point what the next steps are, however, we were pleased when the docs went with two of our recommendations today - 1, to do a bolus (in his case, flush large amount of fluid fairly quickly to intentionally flush the kidneys), and 2, to administer IVIG. We'll have to wait to see if this helps. Alright, now the stool. We know that Xander has sigmoid colon hematomas, and everyone agreed when we received this news a couple of weeks ago that it would not be surprising to have this appear. We'll keep our fingers crossed that these will heal as his platelets rise and will not be a huge issue. This is something that he may have to deal with for a while. I'm going to skip all the details here, but trust me we are still taking pictures.

So, the most direct way to fix these issues is to reduce the immune suppressant drugs. Currently, he is on three drugs to suppress his immune system: tacrolimus, prednisone and enebril. The tacro is at a therapeutic dose and is measured weekly. The prednisone is now orally, once a day at 40mg. This morning was the first dose. So far, he handled it okay. It is possible they will pull the enebril. I think that is being evaluated with the stool issue.

We must be careful to watch for the rash to flare up and to constantly ask him if his gut is feeling okay. The first major indication of a problem will most likely be him feeling bad about 1-2 hours after eating something. So far, he has felt great. We ask him a lot.

Today he was NPO until 3pm. He had a visit from the SWAT team (in blue) and was put through a double poke during a "Seventh Floor Treatment Room" bone marrow biopsy. The SWAT team is a very special group of nurses that are trained to administer anesthesia during inpatient stays. This is lieu of being completely sedated. The best part about this group is that they will do anything to help the children. They moved their schedules around to be able to work as a team specifically for Xander. Thank you to Lea and Matt for making Xander's time as enjoyable as possible. You bring sweet hearts and happy thoughts, not only to him, but to us too. Sitting in the room during the procedure makes our hearts melt; you make this time go much more smoothly.

On the other side of life, we experienced our first major UofM computer system failure yesterday. The system was upgraded over the weekend and on Monday morning NONE of the blood work showed up for our nurses. Not just Xander's, but all of the patients. Every person's day on 7East revolves around blood products. This was a major issue! I am not sure what time systems were restored, and what the status is at this point, but I was happy that I didn't have to deal with that system outage!

ECP for the next 3 mornings in a row. They actually have it on the schedule into August now, 2 days a week. I hope to see this work for Xander and he can get off more and more of the meds as soon as possible.

WBC: 10.9
Hemo: 10.6
ANC: 8.9
Platelets: 59

Thanks for the visit today Elli! That was a great way to wrap up a very eventful day.

Peace and love to all of Xander's followers,



  1. We are thinking of you all the time, Xan Man. We're so sorry for this setback, too.

    Love Grandma and Grandpa

  2. Have a sunny day, Xander
    Cousins David, Asher, and Ezra in MA

  3. You are a brave young man Xander. Always know you will beat this, and people you don't know will pray and think of you being better. Stay strong and smiling, a friend. :)

  4. Extra prayers going out for you, Xander! You're my hero...

    From a friend of your grandparents in NC