Sunday, July 2, 2017

Love and Energy Connection in Germany

Hello to all of Xander's Followers!

We are so blessed to be able to share this exciting news in Xander's Journey ...

On April 28th, 2017 we celebrated Xander's 14th Birthday! This will always be a miracle to us :-)

April 28, 2017

Last month we went back to Clinic for Xander's very first "Survival Clinic" visit. This is really no different than any other visit, However, now he only has to go back once every year! WOW! Xander has grown in all areas this year, and is well into puberty. Of course, it was questionable whether his body would go into puberty, as it is a common side-effect of the treatments for his disease that he would not go into puberty. His metabolic and blood numbers are fantastic, there are no signs of disease. We have had multiple NurtrEval's done over the year, and his body continues to absorb nutrients and he has obviously benefitted from the continued vitamin supplements and probiotics.

As Xander continues to grow physically, he is also growing emotionally. Aaron and I felt that he was ready, so we finally wanted to reach out to his donor. As many of you know, this process is completely anonymous at the outset, and it is up to each family if they want to get to know each other. So we sent a letter of information request to the Bone Marrow Transplant Coordinator at The University of Michigan Mott Children's Hospital to hopefully get in touch. Just about two weeks later, a UPS package arrived on our doorstep and it was the donor's information!

We could not believe our eyes - Xander's donor is German! The cells came all the way from Germany to Xander on April 30, 2013. Thanks to Facebook, we were able to get in touch right away and made plans to visit him in June. His name is Michael Fengler and did this out of the goodness of his heart. Since the donor search is worldwide, our American program is linked to the German program. Actually, Germany has one of the highest percentages of people registered to be bone marrow donors in the world! 

On June 24, 2017, the circle of energy and love was finally complete! We met Michael, and his mother, Pia at the train station in Bonn, Germany. We had a wonderful day in Bonn, seeing the sights, talking politics, and of course, telling Michael how much this meant to us! We also explained the scientific aspect of the transplant, which means that Xander's blood is NOT a product or Aaron and myself, but it is 100% Michael's blood. This reality really hit a soft spot with all of us.

We spent some time deciding what would be the best gift (s) we could take him, here is what we decided:

- University of Michigan, Ann Arbor shirt
- "Hail to the little victors" sweatshirt from Mott
- The Mott stuffed bear that Xander got during his transplant
- One of the strands of cranes from the "1000 cranes" that were folded for Xander by the RSSAA family, along with Sadako and the Thousand Paper Cranes  book 

- We created a memory book with many of the note tags from the tissue paper flowers that were created by the RSSAA family.

- We gifted Pia an RSSAA tile from Motawi Tileworks

Thank you to EVERYONE that helped us make it to this point!

Seriously, we could not have done it without you ALL.

Emilie, Molly, Aaron, Xander, Michael and Pia

Michael, words cannot express how grateful we are to you for your gift of life.

💙  June 24, 2017 💛

Peace and Love,
Emilie, Aaron, Xander, Molly and Hobbes

Friday, January 22, 2016

Enjoying Life

January 21, 2016 - Yesterday marked the 4th anniversary of Xander's MDS diagnosis.

Last Monday he went to clinic for his checkup:

Blood Work - perfect
Metabolic Panel - perfect
No issues to report - oh yah

Focus was on how to bring him off more pharmaceuticals and work on staying healthy. Next appointment, 6 months. Outstanding! Can it be real?

Miracles - I found out a couple of days ago that a friend had prayed for Xander at Maria Esperanza of Betania, Venezuela right at the time as he was getting out of the hospital. I was overcome with emotion and am so grateful for the support of all of those around us whom we see and those we don't.

What more could we ask for? A boy who is enjoying life, school, friends, family, music, theater, his dog and himself. NO emergency or overnight hospital visits in 2015. Thank you to all of our supporters, seriously, we would not be where we are today without you all.

Since our last post on this blog, many things have happened. Most recently, Xander participated in his first public school band performance. (Can't post pictures of other kids here, so no band pic). Technically he was 1st chair clarinet and was selected for the director's band. He also participates in the 6th grade Junior Choir. How exciting!

He also participates in the Community Music School of Ann Arbor's Jazz Ensemble. He has enjoyed the specialized Jazz instruction and has expanded his abilities a lot in this area. He continues to take private lessons from Jennie, who helps him in all areas of his playing.

Let's play catch up:

Xander continued to receive Extracorporeal Photopheresis (ECP) at Mott Children's Hospital from January 2014 - August 2014 to help control the GI-GVHD issues. This worked and when we finally were able to stop going to this treatment, our lives got a lot better. It was 3-4 hours per day, 2-3 times per week. He also continued with Hyperbaric Oxygen Therapy for more than 700 dives!

We did manage to escape for our first family vacation up north in 2 years. Ah... nature.

Soon after that his central line came out (seriously almost on it's own!)

Then the EPIC ADVENTURE that he dreamed about while laying helpless in the hospital bed came true - Cedar Point!

"Today the pigs will fly at Cedar Point! We are so excited to have made it and Xander is ecstatic (along with his 147,000 platelets)!"

They rode the Top Thrill Dragster and were scared out of their minds! Will never forget :-)

Xander was healthy enough to start back up in Martial Arts in September of 2014 and has now been invited to help teach a class!

It's just unbelievable that he can participate in ANY sport at all. He has really loved learning different martial arts and Molly has been great to practice with too.

One of the side effects of the treatments was a condition called erythema nodosum. This is where red bumps appear under the skin and are painful to the touch and also when running or pushing on them in any way. Unfortunately, the doctors said this was a form of chronic GVHD and probably would not go away without immunosuppression. Well, that was the last thing that we wanted to hear, so we immediately took him to treat with Hyperbaric Therapy at the Oxford Recovery Center. With a rigorous treatment schedule, constant application of Oils to the skin, and diving at 3.0, we were able to get the bumps to go away! Unbelievable. What's more unbelievable is that they HAVE NOT RETURNED to this day! This was his only major issue in 2015.

Xander ended the 5th grade school year on a high note - good health! 

Benny Goodman Report at school
A new cousin! First experience with a baby
His wolf drawing

Leaving the Steiner school was a really tough decision on all of us, but ending it in fifth grade was such a way to go out!! The Greek Pentathlon is the big event for 5th graders and one in which NONE of us thought he would ever be able to participate in !! But check this out - he received a crown for "grace and beauty" in his long jump. What an achievement!

Xander's chalk drawing of a Greek Urn


We also got to enjoy Xander's Make-A-Wish trip this past summer! We took an 8 day trip to The Netherlands! Yes, over the pond. Amazing. Incredible. No sickness. Made it back in one piece. LOVE. Thank you Make-A-Wish!!


Garden Maze

The smallest beach in The Netherlands


With the support of Chi Omega Sorority at UofM, Xander was blessed to be granted such a wish!

At the Wing Fling 2015, Xander played his first solo concert. Let's just say that had some tears rolling...  The video is on facebook

Thanks for reading, thanks for your prayers. May the force be with you.

Peace and Love,

Emilie & Aaron

Tuesday, January 21, 2014

MDS - Second Anniversary

Xander's Yggdrasill

January 21, 2014 - Today is the second anniversary of Xander’s MDS diagnosis. OMG, trying to wrap my mind clearly around the past two years boggles my ability for clear thought and makes my heart fill with wild emotions that I hardly have the ability to contain. As I sort throughout my thoughts, I find that one part of the situation resolves quickly and clearly - community.

As a family, we have included you (the reader of Xander’s Journey) in the experience of extremely difficult times along side the times we have shared together in love and brotherhood and you were there. We have invited you to participate in the financial support of our family and you came through for us. You have thrown parties in Xander’s name and you have sponsored our family two years running for Christmas. You have collected change from your piggy banks and you have sent us large gifts of cash at just the right time to help the family not unravel. You continue to provide the medical treatments that insurance does not cover. As Xander’s Dad, I really can not thank YOU enough for the hopeful prayers and loving thoughts that you, your friends, and your family continually send.

Thank You

Now that I have emoted, here’s an update;

Xander has been doing much better with eating. He is finally off of TPN (IV nutrition) and is stepping up his consumption of “real” food. Xander is resisting his restricted diet less and less although we have allowed him to have a couple of risky foods occasionally in order to bribe him (he’s still 10 remember). I know this will sound strange but, we even celebrated the fact he has gas and can kick out a stinky toot or two. This is a wonderful sign that he has solid stools and is digesting food. We still have him float all of his medicine capsules in apple juice for a few minutes before he takes them in order to guarantee absorption.

We have been hooked up with Ms. Tucker in order to keep Xander up to date on the fourth grade main lesson block. He is reading a book on Norse mythology recommended as a substitute for class discussion. Xander made this really great drawing in his main lesson book of Yggdrasill which is the nine worlds for all the creatures to inhabit created from the void. My favorite part of his drawing is the red squirrel named Ratatoskr who is the messenger between the worlds.

Many people would like to know when Xander can return to school. The truth is that we don’t know. The problem is that Xander is still very immune suppressed. The docs tell us that if Xander gets a respiratory infection, it will very likely immediately turn into a situation involving a ventilator and might develop into GVHD of the lungs. Obviously, this is not what anyone wants. However, I do want to point out that we will keep him out of school only as long as the risk outweighs the reward. Xander did go through the third transplant so he COULD return to school.

As for the not-so-good news - We have been dealing with a hematology issue over the past several weeks. Xander’s platelet level has been trending dramatically downwards with a sudden drop (40%) reported today relative to last week. We ran a test to see if it was antibodies he might have picked up with a transfusion - the test was negative for antibodies. Emilie emailed Dr. Connelly today, and we will talk him on Thursday morning. We will post on the blog when we know more, however, it will not be for a few weeks as the genetic test result just takes that long.

--- Peace & Love,

Wednesday, January 1, 2014

A New Year

Happy New Year to all of our family, friends and followers! We are hoping for a much more CALM 2014 than what we had in 2013 and we are off to a great start (I know, it's only the first day, but I'm very optimistic!)

Home! and Hobbes is Happy!

Xander was discharged from the hospital on 12/26, after having a super duper Christmas! Thank you all who helped create the magic of Christmas for our children. With the adopt a family and generous donations from all of you, we had a great day and have been able to keep our family going financially. We calculated that Xander was inpatient for almost 6 out of the last 9 months and it has been a huge financial burden that you all have helped to offset! Thank you. Here is the link to our fundraiser, and we have received many donations not through this site too. I wanted to share this screen shot with you to give you an idea of what this means for medical bills, and please note this is without this most current 3 month inpatient stay.

2013 BCBS Claims - Oy My!

Many of you have asked how we are affected by the Affordable Care Act... we were sent the dreaded letter from Blue Cross that our insurance was going to end. Then they sent the letter again (thought I should act now), and then they even called to find out if we had gotten the letter. I was happy with their follow through. I worked with our agent and got a similar plan to what we have now, however, the deductible/max out of pocket increased over 300%! We are not sure how this is going to pan out for 2014, but thankfully Xander is covered by MIChild state coverage (still have to pay per month), so that helps a ton with the out of pocket hospital charges. Now so that we don't get sick... lots of Wellness Formula and Yoga (need to do lots more of this).

The past few days we have spent getting adjusted to doing all of Xander's care on our own again and getting caught up on our home life. WOOT!  And getting some fresh air...

Currently, Xander is on TPN overnight, on a 10 hour cycle. Typically we hook him up to this when he returns from HBOT treatments at night. We have kept him on TPN for now because it is a guaranteed amount of nutrition that he is receiving via IV. Since his GI absorption is/was really messed up (that's a technical term), we are still unsure of exactly how much of the medication or food he is absorbing. Aaron and I asked to keep him on TPN for another week so that we can make sure he is stable as we add foods and change medications. This has been our mantra throughout the process this time (before we were thinking that he would be able to be "normal" again... but this just isn't the case!). So, now we are taking it very slow, and introducing new foods very carefully. This is a bond that we make to each other so that Xander knows that he is going to get the same answer from both of us. New foods are discussed as adults first, then presented to Xander. Before, we were letting Xander make some of these choices and we don't feel he can do that this time. It is too easy to just eat whatever he wants, rather than what we know works.

His menu now includes: Brown rice in all forms (rice cakes, rice crackers, rice pasta, rice noodles, sprouted rice), eggs (up to 8 per day), parmesan cheese, spinach, carrots, turkey slices, bananas, dark chocolate, blueberries, potatoes and Orgain. We need him to be drinking 3 Orgain per day in order to meet his nutrient requirements daily. This is the highest quality, most caloric dense, organic liquid food that we could find as a supplement. It tastes WAY better than Ensure and is made with high quality ingredients. And, the hospital prescribes it for him (it's $4 per bottle retail). I have been able to make him real dinners from these ingredients - smiles abound!

Xander has really enjoyed cooking his eggs and eating a lot. He has has easily gained 5 pounds since last week and is just simply enjoying the foods he can eat. I have been keeping the cupboard stocked for him. Keeping him up and moving is really important to a speedy recovery and he enjoys his friends a lot!

Walk with George at County Farm Park

We are looking forward to a January filled with being home and not on 7 East. Come on Xan, we know you can do it! 

You all have been absolutely AMAZING to our family - we are so grateful!

Molly and Aunt Katie - we love you!

Peace and Love to all of Xander's followers,


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,


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,


Tuesday, November 26, 2013

Sweet potatoes, bananas, and eggs, oh my

Good Evening,

We are happy to report that Xander has been able to continue to eat some of the foods that he enjoys on a daily basis (sweet potatoes, bananas, and eggs). Over the last two weeks, the docs have been working on getting him on the path to getting out of the hospital. Most importantly, that means moving to oral medications. In order to move to oral medications, his stools have to show that he is actually digesting the food. It appears that he is indeed digesting the food and is also now on probiotics, and other supplements that we want him to be on. This is great news, as he had been off of them for so long!

Over the past two days we had a bit of a set back with the onset of a skin rash (GVHD rash) and the stool output increasing and changing in consistency (I will not post pictures, but let me tell you, we have LOTS and LOTS of stool pictures). We determined that his body was not absorbing the prednisone properly, so we have since moved back to Metholprednisone (IV version). Immediately, we saw a turnaround in his rash and the stool. So, as of today, that is great news.

Xander continues to receive nightly HBOT treatments (thank you to the Oxford Kids Foundation) and is so far without colds or flu. He did get a fever a couple of days ago, but thankfully it resolved very quickly and has not been a problem moving forward.

As we embark on the 7th week in the hospital, you might imagine that we are dealing with the emotional burden that being in this place non-stop brings. Xander has at least 50 interruptions per day. I believe the quietest time of his day is while he is resting peacefully in the HBOT chamber in South Lyon. A huge shout out to Aaron as he definitely gets the Dad of the Year Award. He has stayed almost every night at the hospital with Xander and has kept him on the right track and continues to lead him down the path of healing. Aaron, you are amazing and wonderful in so many ways!

Molly continues to be the best daughter and sister of all time, so to give her a little something special, I took her to see the Young People's Theatre production of Annie this past weekend. It was a surprise for her, and she had an absolutely wonderful time. I hope she remembers it forever. A big shout out to Jasmine and Ruby for a stellar performance!

Xander has many people that come and visit (thank you so much to all of you!) Sometimes, there are unexpected guests...

"Do or do not… there is no try."

Peace and Love to all of Xander's Followers,