It has been five weeks since we last posted regarding Xander's journey - OMG five very long weeks. I suppose I should pick someplace to start, so here I go. I will try not to miss any of the juicy details while still honoring the important ones.
The last we checked in with everyone, we were on our way to Minnesota to meet Dr. Arndt at the Mayo Clinic. We were fortunate enough to stay in Minneapolis as opposed to Rochester. Although we drove 1.5 hours each way, Minneapolis was awesome and Rochester was, well, not so awesome. Food and culture abound in Minneapolis and we had a difficult time even finding a breakfast place in Rochester. On the advice of Julia, we ate at Punch Pizza
while in Minneapolis. Yummy!
|Pediatric Clinic at Mayo|
It took two visits to the Mayo Clinic for us to get a solid "NO" from their hyperbaric team. The hemotology/oncology team said they would potentially put Xander in the chamber if he had the same symptoms as last time, but not until such time. They would not agree to use the chamber for preventative or prophylactic purposes. Dr. Arndt (who is on the COG committee), Dr. Bidadi, and Dr. Rodriguez were all great. Dr. Arndt, in particular, was well deserving of her excellent reputation and it was kind of her to spend quite a bit of time with us discussing Xander's case.
|Xander as "Spaceman Spiff"|
While we spent a few days in Minnesota, Oxford Kids Foundation (OKF) arranged for and paid for Xander to continue his HBOT treatments. The Holland Center Autism Therapy and Clinic had monoplace chambers that required Xander to be fit with a helmet that would contain the pure oxygen. Outside of the helmet the chamber did not contain pure oxygen. This is much like multiplace chambers commonly found in hospitals. For all of you Calvin and Hobbes fans, Xander kinda looked like Spaceman Spiff.
While we were away, Dr. Powell from Oxford Kids Foundation (OKF) had conferred with her colleagues at Detroit Medical Center (DMC) to see if she could move the ball forward. After many conversations and much ado, Dr. Wilson and Dr. Sherwin from DMC's HBOT center had agreed to treat Xander during his transplant if we were at Children's Hospital of Michigan. We had already considered Children's and had asked Dr. Connelly to get us a consult with their team.
|Xander & Emilie after meeting Dr. Chu|
Seriously, while driving away from Mayo knowing that the answer was no, we got a call from Dr. Chu at Children's Hospital of Michigan. Dr. Connelly had contacted Dr. Chu and it actually was looking good. I was able to say with great confidence while on the phone with Dr. Chu that the HBOT clinic at DMC had said yes. Dr. Chu was supprised we had this aspect covered. We arranged a face to face consult time for one week later. To say we were excited is an under statement.
The day came and off the adventure continuted to Detroit. Although much closer to home than Mayo, it was still an all day experience. Detroit is a city with so much potential and DMC is right in the middle of the new cultural city center. Our meeting with Dr. Chu went fabulously! Dr. Chu actually said "YES" and he had spoken with Dr. Sherwin and confirmed that he said "YES". Honestly it looked like a "GO". Dr. Chu said that he needed a week to present Xander's case to his team for the final approval and to work out the details. At this point, we were in love with Dr. Chu for his obvious understaning of Xander's case and his compassion. The team was right and all was good! Logistics were all that needed to be settled.
The next week was spent making the final arrangements with the UofM to transfer records and with Blue Cross to make sure all was right in the insurance world. Issues of transfering the living donor via the National Donor Program (NDP) were brought up and addressed. Gabe was in the hospital during this time with suppressed counts from his most recent chemo treatment, so we spent time with him, too. This gave us the perfect opportunity to say goodbye to the nurses we shared love with at the UofM. Everyone was happy and sad at the same time - this was a very bittersweet moment on Xander's journey. It seemed like saying goodbye in some final and absolute way. There were lots of hugs and exchanging of contacts. It didn't last too long, however.
|Super NP Chastity!|
When Dr. Chu contacted us back, he had bad news for us - he was the only BMT doc on his team that would support us continuing with Xander's HBOT regimen through transplant. All of the other doctors were too concerned with "how they would feel" if something went wrong. The issue of logistics now was minor compared to "NO". Unfortunately, the fact that Xander's age adjusted IPSS-R score is 7 would not play any part in their decision. It took for Emilie and me to sleep on it overnight before we were able to focus on the current reality - no matter how much we like Dr. Chu, Xander's prognossis does not improve based on treating at Children's Hospital of Michigan with Dr. Chu. The stress on the family was worth it if we were going to be able to get Xander HBOT during transplant. However, driving 1 hour each way multiple times daily instead of 4 minutes would not serve the family nor Xander once HBOT was off the table.
|Tracy was Xan's favorite nurse on 7East|
although she works in the clinic now
We officially communicated our intention to stay at the University of Michigan
in a letter of thanks and appreciation to all of the caregivers who have participated in our search. Each responded with words of kindness and hope for our family and Xander's outcome.
Next, we needed to be sure that Xander was still a good candidate for transplant. So, two weeks ago, Xander had another bone marrow biopsy and aspirate taken. This past Thursday, we got preliminary bone marrow biopsy results back - there was no signs of AML and blasts were around 8% (1.3% in January) and the marrow was 70-80% cellular thus the need for preconditioning therapy (chemo before chemo) is eliminated (phew!). Additionally, the donor has given a narrow time window for donation - April 29th. This is one day after Xander's tenth birthday.
|Xander and Molly enjoying RoosRoast|
The doctors have requested and the donor has agreed to a direct marrow draw. This means that the donor will be poked 30-60 times in the hip bone to draw out 300 ml of marrow five to ten milliliters per pull. To be clear, they don't remove the needle from the skin for each poke, so the donor won't look like a pincushion but their hip bone will feel like one afterwards. This necessarily sterile surgical procedure obviously requires complete anesthesia. I feel really honored that a 23 year old complete stranger would do this for my son! I know that I would do it for someone as Emilie and I are both HLA typed and listed in the NDP, but someone doing it for me and my family touches my heart and brings tears to my eyes.
Everything from this point forward looks to be a go. We expect by the middle of next week Xander will have had his central lines placed, EKG, pulmonary workup, lung scan and more blood work (of course). At this point the most important task the family has is to keep Xander healthy! Any sickness could potentially delay the transplant months based on the donor's schedule. However, to be blunt, isolating Xander during the last days he is going to feel good, at least for a while, would be against the main principal that we the Salsitz family have stood for. On that note, RSSAA has this week off, so we have some playdates planned with the classmates that Xander misses so much.
|No, your screen is not dirty…the boy and dog are filthy!|
Our most wonderful German Shepherd Dog Hobbes has been an important part of Xander's mental health. Hobbes is like a little brother with jaws that can crush bones. Not only will he protect the kids but he makes such a great playmate. Hobbes has played a major role in keeping Xander physically healthy and bruised. Play nice Hobbes - be gentle!
Looking to the future here's what you can expect from us. First off, we are all committed to blogging everyday. So if you follow us, we will keep you up to date with at least one entry per day. Second, I think we are going to setup a Facebook page for Xander's Journey. Many, many people have asked us about a Facebook page for Xander and we can no longer resist. In the next few days, we will post regarding the new page.
I want to let all that are interested know that the Eighth grade students at RSSAA are holding a fund raiser for Xander on his 10th birthday (April 28th) at the Neutral Zone
in Ann Arbor. They are calling it XanderFest. Everyone including the public is invited. Of course, Xander will NOT be able to attend as he will be finishing his conditioning literally on that day. I know that his friends will have him in their thoughts and prayers.
I also want to let everyone know that Xander will be one of three children highlighted at the Oxford Kids Foundation
Gala on April 21st. We have created a video that will be debuted that evening and then used at the XanderFest, as well.
Peace and love to all of Xander's followers.
It is so good to see Xan looking so "healthy" (on the outside) now. In a month, it will be a different story. We can only hope for the very, very best!ReplyDelete
love you guys.ReplyDelete