Foods on the menu

Good Evening,

It has been a long time since we have reported in on Xander's journey. The changes are happening very slowly, but changes are happening in the right direction!

This starts the sixth week of admission. The walk to the car is getting longer and the camaraderie with the nurses grows, because this is the new normal. The life of having a sick child, the life of the sick child... Down the hall there is a lovely little lady, who is just about one year old. She has been in and out her whole life, each child on 7East has a different story to tell... I continue with the one I know the best.

Xander is continuing to progress out of GVHD IV+ of the GI tract. We believe that with his current output levels maintained for over 2 days, that he is considered GVHD I-II.

Currently, he is allowed to eat the following items:
Homemade chicken broth (no onions or garlic to not push the gut too hard)
Brown Rice crackers (wafers)
Brown Rice & Quinoa breakfast meal (like cream of wheat)
Maple Syrup
Decaf black tea with Guar gum
...Hopefully adding hard boiled eggs soon

Xander will be following a low FODMAP diet (thank you to Dr. Murphy for your introduction to this) for as long as we can keep him on it. When at home, we will most likely have to store foods in a locked room for a while to help him resist the urge to eat other foods. This child does not have the decision making power that he needs to be successful on his own yet. He'll get there, but for now we have to eliminate the options. We are very careful about what we bring in the room, and keep items out of his reach that he can't eat.

To compensate for his inability to eat, he has been watching the Food Network and has become a wanna-be chef! Tonight he told me he was now going to cook for us when he gets home (I can't wait!) but says he will not eat the food (for now).  Nurse Sara thought this was a great idea and I'm sure Kristin would also love to have him! He has really been wanting to cook, so the other day he had a bit of time to hit the kitchen! We had to be quick about it, but he made some scrumptious gluten-free banana walnut muffins that all of us enjoyed (he could not eat them and didn't). Way to go Xan!

Xander's prednisone level has finally been significantly reduced - now down to 20mg per day. Last Monday, Aaron had a gut feeling that Xander was getting way too much steroid (metholprednisone and budesonide are the two he is receiving). The levels finally came back on Thursday (it takes 12 days to get the results) and indeed he was absorbing 50% of the budesonide into his blood stream. The number was so out of whack that the Doctor had to consult the pharmacist to interpret the data properly. Now he is on just 2 budesonide doses per day and the 20mg of Prednisone was a 50% cut. Aaron and I went head to head with the docs about this that Monday afternoon, practically yelling at them to reduce the steroid. He continued on 42mg for days until this data came back. Here is Aaron's overview of Xander's current therapies to control his GVHD.

It is very apparent that Xander wants to get out of the hospital. He is feeling so much better than when he came in. We have had a lot of time at the hospital and one of the things he has done this time is walked laps on the outside loop of 7 East. Each loop is about .07 miles, so he has logged 14 miles since he has been admitted! And to all of you parents out there... this did have some bribery built into it!

Xander has been the recipient of many lego sets and has enjoyed finishing them with all of us, especially including his Uncle Matt while he was home on leave. We all know that Matt loves lego, and once a lego fan, always a lego fan! Thanks for taking time out to visit with us Matt, we wish you all the best in Norfolk.

There are many people in Xander's life that bring him joy in lots of ways and Dr. Gibson is one of those people. Xander had such a big smile after his chiropractic treatment, I wish I would have taken a picture of that! He felt an overall sense of relief and comfort, it was just outstanding for him (and me too!) Thank you for the continued support Dr. Gibson!

Thank you for all of your prayers and support during this struggle. We are praying to continue down this path of healing and to maintain long-term GI health.

Peace and Love to all of Xander's followers,

Emilie

Halloween Surprise

Hello and Happy Halloween!

I am having a bit of difficulty setting the tone of this post, as there are some nice and lovely things that have happened over the past week, but Xander has still not turned the corner.

So, I guess it's better to start with the lovely things, rather than the not so lovely.

Xander has a very special surprise today from a group of friends from class. The experience started out a bit emotional for Xander, but ended on a very great note, including some fun in the gym on the 8th floor. Thank you to all that made the trip this afternoon, what a wonderful time to spend together.

Surprise Halloween Visit from 4th grade

Molly really enjoyed going to school today dressed up. Here is her awesome Rock Star look! She was a bit nervous about wearing the hair, but she kept it on until they had to change later in the day and she ended up loving it.

Xander's HBOT treatments have been going great. He gets disconnected nightly and we have a good routine going with the nurses. He continues to have ECP three times per week, usually early in the morning, so some of his nights have been very short. He is on so much Prednisone, he isn't take many naps and has been pretty wired. He is on day 17 without food. This is causing him serious mental distress. He breaks-down multiple times per day over this situation. Unfortunately, the bowel movements are just not stopping yet. I say yet, because I am optimistic that they will stop SOON. They have to, they just have to.

The new steroid that was added last week is called Budesonide, think of it like hydrocortisone cream for the bowel. This drug is extremely toxic if it gets into the blood stream, so they will check for levels periodically. His bowels have calmed down some since starting this, however, the dose was increased just yesterday to 3 times per day. Technically, Xander now has Chronic GVHD that is currently Acute Steroid Refractory GVHD. This basically means that he didn't respond to the steroid treatment and this is most likely going to be a problem for him for the rest of his life. (insert big sigh here).

Since he is not responding like he needs to be, we added yet another drug to the line up. It has only been used on 1 or 2 pediatric patients, and has been tested extensively on mice. It is a human protein called Alpha-1 Antitripsyn (naturally occurring in our body) and has been shown to significantly reduce inflammation with few side-effects (in mice). Of course, this has not been used in a setting exactly like Xander's, so we are keeping a close eye on potential side-effects. He has had one dose so far and I believe there are many more to come.

He continues to be on TPN and Lipids and is very skinny. He even commented on this tonight, and I believe that it is the skinniest he has been, ever. His pants fall off when he is on his walks. He walks approximately 1.5-2 miles per day around the 7th floor loop. Yes there was some bribing involved, but it is worth it. It keeps him up and moving and gives him focus. Unfortunately, practically every time he is out in the hallway, he smells food, popcorn, pizza, french fries and sees food in other rooms - it is very very difficult for him, but yet again, he made it through another day.

Having friends come by helps the time go by....  thank you to all who have reached out to help.

Working on a very hard 3-D puzzle

Sometimes, he actually gets along with Molly and they can spend a few nice hours together without arguing. 64mg of prednisone makes him pretty ugly sometimes, so here's a shout out to the best sister ever for putting up with Xander and all he can dish out.

Please keep sending prayers and healing energy to Xander; he just has to turn the corner soon.

Peace and Love to all of Xander's Followers,

Emilie

Let the healing begin!

Good Evening,

There has been a huge amount of activity in Xander's room since we arrived. Currently, he has been in for 10 days - but it feels like 3 weeks. He has not been able to consume any food, we are relying 100% on TPN/Lipids to keep him "nourished." He continues to receive 64mg of Prednisone daily and has received 5 consecutive treatments of rATG. Based on his blood numbers, it looks like the lymphocyte population has decreased significantly. He has had three ECP treatments this week and today they are adding another steroid. The problem is that even though he isn't eating, he is still producing a significant amount of stool. Aaron says to think about it like a sunburn of the lower intestine. You can only imagine the irritation, inflammation and pain that he is having. He is on a constant dose of morphine, along with break-through pain button. This is making him a bit irritable (TO SAY THE LEAST).

But through all of this, he is still smiling!

Yesterday, I bought him 10 more packs of gum, and he actually got excited about them! He says, "what else do I have to get excited about?" We don't talk about food at all in his room and have felt guilty about the last couple of meals that we have eaten.  For now, we all agree we ate "soup for dinner" if he asks :-(

He has been staying entertained with a very inappropriate video game and some other very appropriate items, like beeswax, yarn and lego. I was happy when he asked me to bring more yarn up to the room and to not forget the big box of beeswax too. As you might imagine, this "not able to eat" disease is overwhelming and getting his mind off of it is the number one goal. As of now, he hasn't made it very far on his homework, but he wants to keep working on it!

We have been blessed to have a lot of good energy and prayers coming his way... he is on so many prayer lists... these prayers and healing energy are making a huge difference. The barriers to healing are being lifted!

Thank you to Amy and Marcus for your guidance and meditation, Dr. Gibson for his gentle adjustments, Debbie for your ear points, and all of the Moms out there that are gifting milk to our boy. In an amazing turn of events, Dr. Connelly has fully supported and MADE IT POSSIBLE for Xander to get an official release from the hospital to start HBOT treatment tonight! Folks, I can't stress enough how absolutely life changing this is for Xander. HBOT allows the tissues to heal at an amazing pace. He has been out of treatment for a few weeks - he was really looking forward to it! Thank you to Dr. Connelly, Tami, Bruce and the Oxford Kids Foundation for this incredible opportunity.

There have been SO MANY of you that have helped us in so many ways - I'm sorry I can't list you all right now. We THANK YOU and are so grateful to have you in our lives!

Molly has been supported in so many ways also. She is absolutely loving first grade and is really starting to grow up a lot. Tonight the athletes visited the hospital and the 7th floor. Xander was getting an adjustment at the time and wasn't interested in meeting them, but Molly was! She got to speak with a group of them, and took a particular liking to Wes, who is on the Michigan Rowing Team (left side in picture). A lot of you know Molly loves to kayak, so this was pretty cool for her. It was getting late, so Molly and I started to head out to the elevators, and just so happened met up with some of the more well known players that were on the floor (not that Wes on the Rowing Team isn't well known...) When I walked up to the elevator, I knew right away who was there - Devin Gardner!! He had a yellow carnation flower in his jacket (obviously that some patient gave him) and started talking to Molly right away. We all got in the elevator together and Devin went on to tell Molly how beautiful her eyes were and asked her if he could have them (funny, she said no, because then she would be blind!) He was so sweet and gave Molly his carnation. What a fun way to end the day!

Molly looks a little star struck... although at the time I don't think she had a clue as to why!
She'll love this picture in a few years, I'm sure

In the car on the way home, Molly told me that she was actually going to 'row' now when we go kayaking because she wants to be like Wes. 

Peace and Love to all of Xander's followers,

Emilie

Severe GVHD

Good Evening,

The result of the biopsy is back and indeed Xander has a very severe case of GVHD in the lower intestine, more severe than the first time. We do not know why this has happened, only that it is very unfortunate and must be treated aggressively. He has not responded quickly enough to the increased Prednisone (he is up to 64mg per day). The unfortunate part is that he has to receive rATG, the same immune suppressant that he had during both transplants. This basically puts us back at step 0 in regards to immune system recovery. He will not be able to fight off any viruses, and most likely they will start to wake back up in his system. So all of the drugs he received to treat the viruses will most likely need to be used again.

We are trying to stay positive and use a lot of supportive therapies to recover his gut. He needs a lot of prayers and healing energy to get through this. The not being able to eat part is VERY VERY hard for him. He is able to have gum, so I got him 5 varieties to choose from. It didn't bring him much excitement though.

In a positive light, Dr. Connelly wants him in HBOT treatment as soon as possible. If he responds to the ATG over the next couple of days, then he will be able to get back into HBOT nightly because of the support of the Oxford Kids Foundation.

Thank you so much for all of your prayers.

Peace and Love to all of Xander's followers,

Emilie

5 days without food and counting...

Hello to All,

I sit on 7East writing this post to let you all know that Xander is back in the hospital for what started out as "the flu."

Starting two weeks ago, Xander started having flu like symptoms. After a couple of days of lots of diarrhea, he saw Dr. Connelly in clinic. At that time, his kidney numbers were a bit high and he was a bit dehydrated. So, he was put on extra IV fluids at home. He improved overnight and was checked again on Friday and his numbers showed improvement. Over the weekend he progressively got worse. By Monday morning he needed a wheel chair to get up to the 7th floor. He was admitted to the hospital with a horrible kidney situation, his kidney's were in shutdown mode and his kidney markers were extremely high. Dr. Connelly was a bit worried to say the least. All of the nurses worked extra hard to get Xander stable. Kerri got Xander his favorite room on 7 East (big shout out and thank you Kerri!) and he was welcomed to the floor by his primary nurse, Kristin.

Since his admission on Monday he has had to stop eating completely. This is to try and figure out what the situation is with his gut and to get his kidney numbers stable. Now that he is feeling better, this NO EATING situation is causing him to be a bit ornery.

By Wednesday morning Xander's kidneys had completely recovered! Dr. Connelly called it miraculous - thank you to all who prayed and send their healing energy to him - it worked!

So now we are down to just the diarrhea situation. He has had a CT scan and we have completely ruled out lymphoma or solid tumors (thank goodness). Yesterday he had a colonoscopy which shows what they think is some infection. BUT we won't have the results of the infection studies until Monday. They are also testing for GVHD (graft vs. host disease).

Please send lots of loving thoughts and prayers his way. We'll keep you posted.

Peace and love to all of Xander's followers,

Emilie

Complete Remission (a.k.a. - From bone marrow with love)

Xander as Archangel Michael at the Michaelmas play RSSAA

From where I stand
You are home free
The planets align so rare
There's promise in the air
And I'm guiding you


On Thursday, Xander had a GREAT clinic visit with Dr. Connelly and Chastity. We got lots of great news…

Fluorescense In Situ Hybridization (FISH) Analysis Report
Date Collected: 8/20/2013 (yes, it really takes this long to get these test results back)
Indication: Myelodysplastic Syndrome (MDS)
Disease Status: Complete Response (Remission)
Specimen type: Bone marrow aspirate

INTERPRETATION:

No evidence for loss or deletion of chromosome 7

200 cells were examined for this probe set

COMMENTS:

Interphase FISH analysis was performed to determine whether the loss of chromosome 7 known for this patient was present. The signal patterns associated with loss or deletion of chromosome 7 were not observed (0/200 cells 1R1G or 1R2G)

Such great news!!!

In addition to the great genetic report, Dr. Connelly finally is allowing Xander to officially go back to school! 😉  Xander was really weak only 6 weeks ago from muscle wasting from high dose, long term prednisone use. It was so bad at one point, he needed assistance walking up a flight of stairs - we talked about wheelchair seating. Three sessions of PT and lots of "Salsitz boot camp", now he can run, he can jump rope double dutch, he can leap tall buildings in a single bound (not really)… Watch out Grade 4 RSSAA Class of 2022… Xander is back.

Xander is still going to ECP four times a month and is almost, but not quite off of steroids. For those of you in the pharmaceutical know, he is down to biologic levels of prednisone every other day (5mg) with hydrocortisone on off days (15mg). It will take another 2 weeks to be off of the prednisone and 4 more weeks after that for the hydrocortisone. In one more week, Xander will be able to stop taking Valganciclovir as his CMV serum level is less than detectable for three weeks now. At this point he will be off of all antibiotics, antifungals, and antivirals except for his monthly pentamidine treatment to prevent PCP pneumonia.

On the home front:

 

Recently, Grandpa Howie and Grandma Rhondi visited from California. The weather was awesome the whole week. This was very fortunate as Grandpa brought a bug with him from his 50th high school reunion in Parkersburg, WV. As you can see in the picture below, both Grandpa and Grandma were really conscientious of not sharing the bug - they both used hand sanitizer and wore surgical masks while using the facilities within our home. While it was awkward not to hang out inside, the incredible weather really helped as they did not need to wear masks outside. Our efforts were rewarded and no one else came down with the bug.

At school, Xander was Archangel Michael in the Michaelmas play (see picture at top of page). Michaelmas is a very important festival at school and also seems to be very much Xander's story. You see, Michaelmas is celebrated as the festival of strong will. Obviously, Ms. Tucker (Xander's class teacher) chose him as Archangel Michael for symbolic reasons. Ms. Tucker told the Xander's classmates Xander was to be Archangel Michael because he has tamed his dragon.

It was a wonderful play. It was really special to us in a profound way, however. At RSSAA, all the students in Grade 1 through 4 participate in this play. Molly was a Gnome as she is in Grade 1 and was so sticky sweet. It was really incredibly special to us and it was great to have Grandpa Howie and Grandma Rhondi in town to enjoy as well. We are so glad to have two healthy kids again!!!

In the afternoon after the play, there was kite flying - also a Waldorf tradition. Molly and Xander both ran and ran and ran. In our years at RSSAA we have only ever seen one day with enough wind to actually fly the kites and that day was lightning and thunder along with the wind. Of course, this means that the soccer field is covered from end to end with the kids running back and forth trying to get their kites aloft. It is always a great time and good exercise, too.

Thank you to all of Xander's followers and supporters. Xander's strength and Xander's victory over Myelodysplastic Syndrom represents your strength as the villiage that supported our family. Therefore, our victory is your victory - from the bottom of our hearts… thank you for your support ♥

Peace and Love to all of Xander's followers,

Aaron

Looking up

Good Morning,

Day +116

The bone marrow biopsy was completed this week. The initial results indicate Xander's disease is still in remission. There are no signs of blasts or leukemia. The results of the FISH study to determine if there are MDS cells will not be back for about 5-6 weeks, so we patiently await what lies ahead. In the meantime, Xander continues to be blessed with positive momentum and is focusing more on being a kid again. He has a long way to go on many fronts, but we are confident that with the right help, he can reach his goals. Thank you to all that have helped him over the summer. We look forward to continued strength and spending time together as the school year gets underway.

If you have followed Xander's journey, you know that Xander's blood counts have gone up and down significantly (in just days) throughout this process. This weeks results were pretty impressive (given the drugs he is on, especially. They force his counts down):

HGB: 10.8
Platelets: 110  <--- Highest in 2 years!
WBC: 5.0 (normal range)
ANC: 2.5 (normal range)
HCT: 32.6
Albumin: 3.6 (normal range)
Calcium: 8.8 (normal range)


His Epstein Barr Virus situation continues to be under control. The Rituxin doses seem to have beat it out, along with the RIFE treatments at Dr. Kyle's office.

Xander continues HBOT treatments, with our love and thank you's out to the Oxford Kids Foundation for making this part of Xander's daily reality.

And love to our dear Aunt Katie for making these long August days (while the parents work) enjoyable! Here's to happiness in all you do :-)

Looking forward to reconnecting with many of you this weekend!

Peace and Love to all of Xander's followers,

Emilie