Oral Tacro means more time disconnected

I was so elated to see Xander walk out with Aaron this morning when we met up before school. What a  wonderful feeling!

We are happy to report that Xander has moved to oral Tacrolimus. This is such a big step because it removes his "attachment" requirement from the pole significantly. He is also starting to wean from the TPN-Lipids, as he is now starting to consume more food. As we have talked about this is a very slow process. He is currently able to eat crackers, rice crispies, eggs, chicken, rice and broth. Yes, he is already sick of it and asked for Pastrami! We'll hold on that for now :-)

Some of you have received my graphic version of Xander's stools, of which I won't go into detail here. But let me tell you all that I will be really happy to not have to examine poop of any kind for a long time. It's just not my forté. Thank you to all of the nurses out there, you deserve to be paid more.

The second ECP treatment was today, and so far it has gone very smoothly. He has to wear sunglasses for 24 hours post treatment, or be in a dark room. This is a very easy side effect to deal with compared to the side effects of the steroids.

ECP Machine

ECP Shades

He will get another ECP treatment tomorrow and three next week.

We have stopped everyone from mentioning the "D" word. When it comes, it comes. Until then, we are happy that he can call today a good day. Thanks for the visit George!


Peace and Love to all of Xander's followers,

Emilie

Counts

Good Evening,

Xander is on the upswing in regards to energy level, food intake and overall spirit.

Every day we talk about counts, and we receive daily updates of the Hemoglobin, WBC, Platelets and ANC, among others. We continue to monitor his Liver and Enzymes daily. He gets glucose checks post TPN (means a poke). He has everything translated into a number. We are thankful that lowered counts has not been a major issue for Xander at this time (he did have some big drops, but has since recovered nicely).

As of tonight at 7pm:

Hemoglobin: 11.4
WBC: 18.9
Platelets: 95
Hematocrit: 33.2 (>30 for ECP, or needs transfusion)
ANC: 11.7
CMV: 1300 (up from 817, but not alarming)

Tomorrow, Xander's steroid dose will be reduced. Along with ECP, this will be the first step into removing some of the immune suppresents. We hope to keep Xander in the mode of continuing to lower the steroid doses. These have long-term health effects that we can hopefully avoid if he responds to the ECP. In addition, he has to move his TPN-Lipid schedule around so that it can be turned off at different times of the day. This is inconvenient, but will hopefully be short-term as he continues to eat more and more simple foods. However, let me tell you, that Zingerman's broth has been really great and just enough fat-protein to get him feeling a bit better every day.

You can see his enthusiasm here, as he eats yet another spoon of rice.

okay, I'm cleared on rice, let's move on

The whole eating situation has been nothing but a headache and heartache. He is so hungry, yet they say he can only have 32oz in one day, and rice, and just a couple other not so great items. He is getting frustrated and we are getting frustrated as he is doing so well and it is obvious that his stools and gut are cooperating. Mind like water. We'll get there, just a couple more days...

Changing it up again; Dr. Levine comes on tomorrow.

Peace and love to all of Xander's followers,

Emilie

GVHD to be downgraded

Good Evening,

First and foremost, our apologies for taking so long to post these updates!

Here is the latest, to the moment, update and we'll try our best to keep it going on a daily basis again.

Xander's GVHD of the gut will be downgraded tomorrow to grade II. This is great news, as he has been able to meet the guidelines set forth for I's and O's. He has hardly had any water via mouth however, only broth, tea and gatorade. The path to getting him eating 1400 calories is now looking much better. We are slowly and methodically going to get there. Xander is doing a great job managing his hunger, which 2 days ago, he called starvation. He said for once in his life he now knows what it is like to be starving. For real, he did not have any food by mouth for 4 whole days. Indeed he was starving.

To make sure that he wasn't "academically" starving, he has been on TPN-Lipids now for many days. This allows his body to receive the bare minimum to keep running. This will start to taper down in quantity as we move through the upcoming week.

Xander's GVHD of the skin is cleared to just 5% remaining, per Dr. Connelly this morning. His skin looks great compared to a week ago, and is responding to the steroids well. He now has to have very thick moisturizing lotion applied by the tablespoons full. This is to help prevent the drying out and reduce the infection risk. Aaron has a very nice method worked out to apply this lotion, of which I would not be good at after seeing it first hand this morning (there is a bit of torture involved - ha ha).

Xander's CMV count did creep up also during the past few days as everyone expected. When last checked it was at 817. This is very low for you and I, but for him can cause a systemic infection very quickly. Because of his intolerance of Foscarnet, the Docs decided to give him Ganciclovir instead. This drug is also harsh. One of it's major side effects is lowered blood counts - we surely don't want that to happen. So far, so good. But this is literally day by day also. They will use trends, but a trend down in this case is very serious. We are watching and they are watching very closely. If and when they do have to change him off the Ganciclovir, they will move him to IV Foscarent twice a day (ugh). That means bolis' on both sides too. Just hours more of pushing Xander each day if this is the case and helping him get through the nausea and vomiting that he had trouble with last time...

In regards to ECP - called photopheresis for short, will begin on Tuesday. He will undergo three treatments next week and more the following week. We will report on the full details of this adventure as we go through it. It sounds very promising for getting him off the steroids sooner.

We have been talking a lot about stools and ounces in Xander's room. Thank goodness there have been other things too!

We have been blessed by many friends visiting over the past week, most of them playing Minecraft with Xander (which I really stink at so it is good to have someone else play)! This has really helped Xan pull through and has helped the days of starvation go by more quickly. Thank you to all of you (Evan, you are so sweet to shave your head, it makes me smile every time I see you).

Elli and Xan

CC's first ever game of Minecraft (Janice *helping*)

We felt especially blessed to have Calisa and Gary perform with their ukuleles (first ever performance together) "Don't Worry Be Happy" - it was so very sweet and made us cry, too. They will really need to perform this for the whole class soon, it was just lovely.

Gary and Calisa

Thank you to Amy and Markus who have helped Xander center himself and assist him in finding his inner strength to get over these hurdles. All our love to both of you. Thank you!

Dr. Gibson, you always provide relief and this week was no exception! Thank you for bringing him out of the pretzel shape post-op and a much needed follow-up. He would be in much worse shape if it wasn't for your help. Thank you!

ooooo, that hip is 1/2 an inch out (post op)

All of you that have brought us dinner - we have enjoyed them very much - and it seems like the days are perfectly picked as our busiest ones! Thank you!

To those of you that have donated to Xander, this has made our lives much more smooth. It has lowered our stress level significantly. Really. A. Lot. Thank you! Our donation site is doing very well and we are getting very close to our goal.

And, to all of those that aren't in those groups, that have shown their love, compassion, care, prayers, hopes and thoughts - we thank you and are grateful for each and every one of you.

Oh, and you nurses on 7 East - simply put, you're the best.

An original spirograph (no pins though, just putty)

Peace and Love to all of Xander's followers,

Emilie

Grade III GVHD of the gut

We have confirmed via biopsy that Xander does have grade III GVHD of the gut. We have also confirmed that he does NOT have CMV in his gut. GVHD is very serious if not treated, but of course, it is being treated with steroids and enteracept and was being treated before the biopsies came back today. His blood counts are doing fine.

He also has some hematomas in his colon, these are just like blood blisters, seen when a person has low counts for a long time and should heal on their own. Most importantly is to keep everything moving smoothly (which currently is NOT an issue).

So, after all this, today he has been allowed to eat 12 oz of broth only (yes, only 12 oz during 24 hour period). Unfortunately  he has already shown that this is a bit problematic, with a large stool. So, we are literally taking it ounce by ounce and stool by stool. He has had no discomfort or emesis with the eating so far today, so that is good.

This process is like introducing food to a baby... so little by little we will see what he can tolerate.

Dr. Connelly has recommended moving into ECP for treatment of the GVHD. If you are really interested to know more about this you can read about it here - the basic idea involves collecting leukocytes from peripheral blood. These cells are exposed to a photosensitizing agent, 8-methoxypsoralen, and are then treated with ultraviolet (uv) radiation, after which they are re-infused. This procedure, which results in crosslinking of pyrimidine bases in dna, produces massive apoptosis of the treated cells, thus reducing the GVHD reaction. This would likely start next Tuesday or Wednesday and is about 2 times per week.

Thank you all for your prayers,

Emilie

NPO - not exactly

Still NPO, but not exactly. We have the "you must drink this nasty salt water" docs overriding the "you must not drink anything" docs.

Xander will undergo multiple procedures tomorrow, all while under general anestesia. He will have a Esophagoscopy Gastroscopy and Colonoscopy. They will perform biopsies to test for GVHD and CMV. They want to verify that it is GVHD and rule out CMV. Many of those over 50-year olds out there can empathize with the drinking the nasty salt water "stuff."  Side note, we won't get these tests back for 3 days.

Unfortunately, we are in the "gut shutdown" mode, which means longer recovery. We will have to slowly start adding foods back in as soon as his diarrhea is gone completely (still could be another day or two) and wait for his reactions. There is basically a three day window for the GVHD of the gut. So reactions can take up to three days to present... sounds like a very delicate balancing act!

He's on TPN-Lipids now to assist his body in staying alive during this time without food. I am confident that we will be starting food back up VERY soon.

Because of the continued stool issue, Dr. Connelly is moving forward with GVHD treatment, which is Enebril (Enteracept), which is what he was on earlier with the skin that didn't respond (if only we had left him on it!!!!! - I know, that was a lot of exclamation points).

There is just no way in this field to predict what will happen and what child will have what reactions, and to boot, every child is different. Dr. Connelly has talked with us about when they sometimes have to try and INVOKE the body into these types of reactions to get the immune system to fight off the problematic cells (in our case, MDS). Whoever patents how to quantify the GVL effect is going to be a very important part of the future success of bone marrow transplant for curing these diseases.

We have a lot of woods left in front of us.

Peace and Love to all of Xander's followers,

Emilie

Laying Low for a couple days

Good Evening,

The CMV results are back and we are super pleased to report that the CMV is detectable but not quantifiable (zero) - This is exciting news and just what we were hoping for. Unfortunately, we are not going home quite as soon as we would have hoped. That's okay though, third time's a charm!

Dr. Connelly is covering all of the bases in regards to Xander's GI issues. He went NPO at 11am this morning and will stay that way through tomorrow morning. We will see if the diarrhea stops (so far, it has lessened a lot). The goal is to isolate the GI issues as a bug or as GVHD. If he shows significant improvement by tomorrow morning, then we will allow him to drink some water and see how that goes. Otherwise, if the diarrhea persists, they will take him in for an upper and lower intestinal biopsies on Wednesday to determine whether it is GVHD or not. Aaron and I speculate that the gut issues are related to the oral steroid that he was switched to, but this is just our parental feeling. We will see where it goes over the next 24 hours or so.

My boys

These types of symptoms are all part of what we have to work through over the next year as his immune system changes and develops. There will be many more stomach bugs, I'm sure, and each one will probably bring with it a trip into the hospital. At least for this one, we were already here! A big bonus (which I think Aaron mentioned a while ago) is that while we are still inpatient now, we are considered ACTIVE BMT: this means SPECIAL treatment and SPECIAL nurses. Xander likes special treatment and special nurses :-)

Please send Xander lots of loving thoughts and prayers over the next 24 hours, he will need all of that love and energy to nip this one in the bud!

Peace and Love to all of Xander's followers,

Emilie

Gut bug OR immune system training session 1.0

Xander posing in front of Mott Hospital

Xander laid low this weekend. Thank goodness it wasn't because of a setback in his BMT. On the contrary, his cell counts are outstanding! On Sunday morning his white blood cell count was 10.3, platelet count was over 100 and hemoglobin bumped up to 9.8.  Xander continues to be afebrile. The doctors and nurses are amazed - flatly and admittedly amazed! Everyday gets better and better. I am sending a huge shout out to the donor! Thank You!

Even with fluid pouring out of both ends half of Saturday and all day Sunday, Xander managed to keep up on fluid and keep his ins and outs balanced. At first we thought the sickness was from switching from IV to oral predisone at such a high dose, but we don't believe that is the issue any longer. It is a bug of some kind. We know it is not C. Diff. Other cultures are pending. By late Sunday night, Xander was having much less gut pain and the vomiting nearly stopped.

Finally, we managed to get a quart on Zingermans chicken broth in him, but other than that, food has been a non starter. Monday's a new day though. I'll report on the CMV blood work as soon as I know. That means that there will be an additional blog post today as soon as I have test results and blood work back.

Peace and Love,

Aaron

CMV... to go or not to go

Good Afternoon,

Xander has been doing very well over the past 2 days. He is now disconnected from the pole for the majority of the day and hooked up only to receive his medications.

The biggest change since our last post is the onset of acute GVHD (verified by skin biopsy). His rash did not respond as much as they were hoping to the Enebril, so they changed over to giving him Prednisone. This is a normal GVHD course, and his body responded immediately! His fever ceased within the first hour (he is still afebrile over 36 hours later). The steroid will run over approximately 6-8 weeks.

His last big thing... at least at the moment... is Cytomegalovirus (CMV). He has had multiple tests for this virus and the last one came back detectable, but with a count of 0. The one before that came back detectable, also with 0 count. Now we must wait for one more CMV test that they will pull early Monday morning. Hopefully by Monday night we will know the results. IF he does have a count number on Monday, then we will have to stay inpatient for 2 more weeks (at least) while he begins the not-so-fun process of getting foscarnet twice a day.

So, at this time, everyone is hoping and praying for the best and nurses have started the discharge procedures. We have clinic appointments on the schedule for next week, as if we will be home. Let's hope and pray that this is the case and that Xander doesn't get CMV this time! This will be something that we will monitor outpatient every week also.

Xander's counts are doing great (we are expecting the decrease in WBC and ANC due to lack of nupigen and now steroids)!

WBC: 6.3
ANC: 4.3
Hemo: 8.3
Platelets: 50 (WOOT!)

Elli - thank you for the visit and making Xander laugh - you are a great friend!

Peace and Love to all of Xander's followers,

Emilie

Our Rockstar!

Today I had the opportunity to spend lots of time with Xander and want to tell you all that he is indeed a Super Rockstar! I am so impressed by his determination and perseverance  even when feeling bad and crappy and bad and crappy (yes, bad and crappy).

He has had quite a number of emesis' over the past few days, but today - NOT A ONE! WOOT!

For breakfast he had..... wait for it.... wait for it...... eggs florentine! (I was thinking there was no way he was going to eat this since he has been feeling so bad, but yes, I was wrong - yay) He also had beer cheese soup, brownies and Orgain so far this afternoon. Way to go Xander!

He came down with a rash 2 nights/days ago. Yesterday was spent working on what they would do with the rash and how to best treat it (thank you so much to Aaron for asking ALL of the right questions to make sure the study that we enrolled him in was appropriate!). The docs have determined that his skin rash (as much as they can tell) is GVHD in nature (not a virus). This was determined by a skin biopsy that he underwent yesterday.

His rash responds to the steroid cream and does not seem to be getting worse 24 hours post first dose of Etanercept. This is great news.

As for other issues, his CMV level has now come back as 'detectable'... if it reaches a certain level, then he will have to start Foscarnet twice a day until the level goes back down. This is a bummer and we will pray that the level stays down (next test tomorrow).

Some things we have enjoyed.... Molly doing the dishes, a visit from Michael, and lunch outside in the nice warm weather.

His counts are doing great (we are not surprised at a bit of a drop in the WBC and ANC due to the steroid cream) - today is the first day that he has made platelets (even though just a few thousand we still celebrate)!

WBC: 6.5
ANC: 5.8
Hemo: 9.2
Platelets: 36

Peace, Love and Cellular Harmony,

Emilie

Uggg… Great counts crappy fever

Monday (+13) morning blood work:

WBC = 6
ANC = 5.1
Hemoglobin = 10.4
Platelets = 42

Of course, you can believe it… we have had the repetitive experience that every {bleeping} time that  things are on track and a doctor mentions the word "discharge", the situation quickly turns around. It's like a sick Vaudeville act.

Starting at 1 am, Xander kicked off a fever that fluctuates between 100.5° and 103° and has lasted all day (it's actually Tuesday morning as I write this and he is still febrile). Uggg! Of course, along with the 103° engraftment fever, came a very mild GVHD engraftment rash (all over his body) and he has been vomiting throughout the day. Monday kinda sucked.

Although it sounds like things are not going well, in actuality, the fever and rash are par and even are considered to be BMT milestones. They have cultured Xander's blood and urine to be sure that there are no infections. Early results show no infection. Until the final results are back, Xander is on IV cefepime - a very strong antibiotic that has the side effect of killing all of the gut flora that allows for firm stools. Needless to say, Xander hates diarrhea.

Xander slept much of the day since, fortuitously, Monday brought him no "fun" visitors that needed to be canceled due to his feeling bad. Dr. Anderson, our NAET practitioner, came in and did muscle testing in the evening. The results were encouraging - Xander did not show that he needed to be treated for anything. Dr. Anderson specifially tested him for the donor's isolated cells and he did not have a reaction. Dr. Anderson, though through very different methods than used by the allopaths, came to the same conclusion that the fever is fine and his body is handling it well.

Xander, the BOY in the body is still doing well. He has had the most amazing attitude this time in the hospital even when his body's symptoms drag him down. I have seen the positive energy created by having a personal goal in mind. This boy, more than anything else, wants to go back to school and be with his friends. He has tolerated more, tried harder, and been stronger because he is keeping his eye on the prize.

Since I have them while I write this, here is the blood work as of 1 am Tuesday (+14):

WBC = 8.7
ANC = 7
Hemoglobin = 9.4
Platelets = 32

Thank you everyone for keeping Xander in your prayers.

Peace & Love,

Aaron

The "D" word has been spoken…

Shout out to all the wonderful mothers out there:

♥ Happy Mother's Day! ♥

  
As I previously blogged, Thursday morning Xander had his first detectable white blood cell count of 200. It would have be a blessing if on Friday he saw a gain or at least held the level. Well… on Friday Xander's WBC count did go up AND held his hemoglobin. Xander did NOT need to get packed red blood cells on Friday! Dr. Kitko an Dr. Tran declaired that Xander to be engrafting as of Friday ♥.

But wait there is more… and here it is… without any further ado… ;-}

This weekends results are so incredible that you need to be sitting down - don't read the next line while driving… As of day +12 Xander has a white blood cell count (WBC) of 2900 with an absolute neutrophil count (ANC) of 1600 AND his hemoglobin is showing recovery (10.4). Xander has been blessed with no fevers (afebrile) and no symptoms of graft versus host disease (GVHD). Xander did get platelets this morning due to falling below the transfusion threshold, but not because of a big drop. Xander actually has been statistically holding platelets for two days.

Dr. Kitko used the "D" word - DISCHARGE - maybe mid next week after Dr. Connelly rotates on if trends keep up without complications. Dr. Kitco ordered the switch from IV tacrolimus (anti-rejection drug) to oral. The first 24 hours of the switch have been fine. We are still taking it one day at a time but I am so thrilled in every nook and cranny of my being - Xander's future is yet to be determined but I am just excited he may have a future. Still, Emilie and I work hard to enjoy each day and show thanks for what we are blessed with.

The mornings seem to be starting out a little rough but improve by late morning. It is not unexpected that Xander does not feel at the peak of his game in the mornings. With a little more time and no more chemo drugs the overwhelming yucky feeling that he has everyday should begin to subside. Monday morning at 9 Xander will get the last dose of scheduled chemo. In the mean time we will take advantage of the anti-emetics that are available. Dr. Kitko has moved Xander over to oral Kytril from IV phenergan in preparation to go HOME. Xander will still need IV magnesium run every night for a while - even while at home.

Friday afternoon, Xander was asked if it was okay for the Department Director of UofM's BMT program to bring several medical students by to visit and talk about Xander's condition. Dr. James Ferrara first came by alone to make sure that Xander was feeling okay and not doped up. Shortly thereafter, Dr. Ferrara returned with 5 medial students.

Everything was going well… for a bit. Emilie received a huge compliment after accurately talking BMT "shop" when Dr. Ferrara asked if she was studying to be a hematologist oncologist (way to go Emilie). The students were amazed that Xander was so knowledgeable about his disease and was so proactive in his own treatment and recovery. Then something strange happened…something really weird.

You will pass out when I say "pericardial effusion"

While Xander was telling the students about last years events, specifially his pericardial effusion, a student passed out and collapsed. Aunt Katie and Erik were in the room, Dr. Ferrara, and four other students but it was Emilie that saw what was happening and hustled across the room to catch the student. Emilie saved the day… but you say what was so weird about that???? Well…

When Xander and I were doing our interview with the K-12 beat reporter for AnnArbor.com regarding Xanderfest, she collapsed during the same part of the story. Danielle had to leave the room to get a glass of water and passed out and hit her head. We ran to her rescue but the damage was done. I guess talking about draining 410 ml off of a 9 year old kid's heart is overwhelming. I am so thankful to God in Heaven that Xander has had a smooth BMT thus far. WOW!

Last night, Emilie and Molly brought a special treat to the parking lot - ice cream and Admiral Hobbes. Let me tell you, both boy and dog were so happy to be together. Hobbes is such a good dog, he seemed to know that Xander was fragile and did not jump or use his mouth on him - not even one bit. Xander ate his ice cream and played with the dog for a bit and then it was time to go back to the hospital room.

Today Xander's teacher, Ms. Tucker, is coming to learn to play Minecraft. Evidently, she is the last person in the third grade to learn to play :-) Watch out creepers and zombies when Ms. Tucker is in the house!

Not trying to jinx anything, but it looks like we did it. The next big test is on day +30 when Xander will have another bone marrow biopsy that will determine the engraftment percentage (VNTR). Beyond that, the next ninety days will be the most important regarding GVHD symptoms. Thank you all for your prayers - we feel them and it is working.

Peace and love to you all!

Aaron

Welcome back… welcome back… welcome back!

Thursday was super AWESOME!!

Although no one expected Xander to have a White Blood Cell (WBC) count so early… they're here!  Every nurse and every doctor that worked with Xander gave him a "woot" or a knuckle bump or BOTH! We are so excited! We are so thankful! The joy in my heart is overflowing and I really can't stop crying as I write to tell everyone the good news!

Xander, however, is still transfusion dependent. Today he needed platelets as his body is chewing them up very quickly. There are a couple of reasons for this, but at this point, it is par that he is getting transfusions daily and sometimes multiple times daily. We hope and pray that the cell lines continue to reconstitute. Normally, white blood cells come first, then hemoglobin (RBC), and finally platelets. Translated, this means that the next forward motion we expect to see is the WBC count continue to increase while hemoglobin begins to hold levels from day to day ultimately eliminating RBC transfusions altogether.

IT'S HAPPENING AND WE ARE SO THANKFUL.

When Emilie and I went to get Le Dog (best soup on planet), we saw a van decorated with an important message - voteforbre.com. Currently, Bre has 66,000 votes and as we understand, has the most votes going into the second phase of the contest. Bre is a really cool and happy child who gives the most awesome hugs. We met Bre at Oxford Hyperbaric Center where she treats for inflammation reduction and well being. At the Oxford Kids Foundation Gala, Bre sold hugs non-stop - she is filled with love energy you can feel when you hug her as well as see in in her eyes when you meet her. GO BRE GO!

As I was working on Xander to eat his soup (veggie chicken noodle), Gabe and his grandmother Debbie showed up. Gabe was looking a bit groggy and pale when he came in. Come to find out, he had just woken up from anesthesia having just undergone intrathecal delivery of chemo and spinal fluid sample. It wasn't long, however, before he and Xander were laughing, talking and playing. Gabe seemed to forget he had just been sedated! I let Gabe use my computer so he and Xander could play Minecraft together. Gabe really liked the desktop version of Minecraft as the Xbox version is not as comprehensive. Gabe liked the bats very much and thought is was "no-fair" that Xbox doesn't have them. Killing creepers was very enjoyable for Gabe so they played until 4pm when Debbie and Gabe had to leave.

The evening was relatively quiet. Xan decided that he wanted Fettuccine Alfredo with gluten free noodles from Argerios in Ann Arbor. I think that there are somewhere around a million fat grams and calories in each bite of the Alfredo sauce - it is sooooo yummy! As you can see, Xander thinks it is yummy, too. Xander ate an OMG portion as normally we split one order between the three of us.

Later in the evening, Xander, Emilie and I took a long walk in the arb. It was such a beautiful night - even at 10pm the temperture was around 65 degrees. Xander had to rest often and by 11pm, he wasn't feeling the greatest. There was no fever or troubleing symptom, just a general malaise and ill feeling.

When we got back to the room, I kept my end of the bribe bargain as I had agreed to play Minecraft with Xan. We played for only 20 minutes or so before he passed out.

Thank you everyone for you support. Keep your eye on Xander's Facebook page (facebook.com/xandersjourney) for updates throughout the day. For those not on Facebook, I will continue to fold the Facebook updates into the blog.

Peace and Love,

Aaron

A rough start with a smooth finish

Well, today (Wednesday) got off to a scary start. When Xander woke up, he was feeling very bad and his color was not right one bit. Once again, Xander's platelets fell to 4 overnight. His hemoglobin was 8.2 which was over the 8.0 limit and high enough that he did not qualify for getting packed red blood cells. When Emilie arrived at 9ish with an Angelo's special breakfast, Xander was clear he wasn't going for it… instead, he wanted a deli sandwich from Zingerman's. Emilie went out and got the sandwich and a Cinnoman (an oversized cinnamon bun) and Xander still would not eat!

It turns out the major problems was Xander did not want to eat because he had a loose tooth that was really bothering him. Xander later told me that he he decided at that time that the tooth, although not REALLY loose enough to come out, was going down. He said, "I just turned off the pain switch and then I got a good hold and twisted and pulled. It was like scratching a really bad itch." After pulling it out the docs were all really pleased that he clotted up nicely. The tooth itself was a bit bloody and fleshy but it's removal enabled Xander to finally get his appetite back. Xander then proceeded to eat very well the remainder of the day and even got to share Argieros Fettuccine Alfredo (it's the best) with Evan during his visit. After a little convincing Evan that Xander would not eat two adult servings of Alfredo and even though Evan had eaten a full dinner, being almost ten, he found room to eat more.

It took until late morning but the doctors finally decided that Xander needed blood after all and even though his last test for hemoglobin was over 8.0, undoubtedly, he would drop below the transfusion threshold within hours. Thank you docs for getting my boy blood!

It is really amazing watching someone with very low hemoglobin get blood. The scene plays out like some old school Bugs Bunny cartoon where you see the cartoon character swelling to capacity after a hose is attached. In the cartoon plot, a colored fluid of some sort fills them and changes the character's primary color to that of the fluid. Seriously, getting hemoglobin is just like that - you can literally watch and see as Xander turns from greyish to being flush with color. Amazing!

After school, Corbin (a third grade classmate) and his older brother Wilder came to visit and brought Molly with them from school, too. Xander taught his friends to play Pocket Farkel, which is much like Yahtzee, and then took some super fun pictures with Photo Booth on his new computer with his friends. Of course, the laughing and giggling was non-stop as the boys took the funny looking pictures. It was really great that Corbin and Wilder came to visit. The adults enjoyed visiting, too.


In the evening, Dr. Gibson (our family chiropractor) came and adjusted Xander. Xander really needed the visit. Xander is very blessed in so many ways including that he has health practitioners that love him enough to come to the hospital and help. Dr. Gibson was instrumental in Xander's surviving the 96 days we spent at Mott last year and continues to be generous and helpful this transplant. Thanks Dr. Gibson!♥!

Speaking of health practitioners, we would like to send a big shout out to Dr. Anderson, Xander's NAET practitioner and to Amy and Marcus, the energy healers that align and bring helpful energy to Xander's being via crystals and laying on of hands.

The evening brought time off the IV pole and a nice walk through the this side of Nichols Arboretum. Oh yeah, one more thing, Xander topped the evening off with a 20 ounce chocolate cherry malt! If he was missing any fat or calories for the day he made them up with this dessert :-)


Peace & love,

Aaron

Day +7 - Mmm, I'm gonna try with a little help from my friends

Day +7 post transplant had a bit of a rough start. Xander's need for transfusions has increased dramatically. The doctors have started checking his blood counts multiple times daily and transfusing him due to the extremely low levels. Yesterday morning, Xander's platelets were at 4 (thousand) and after receiving five units, bumped to 25 an hour later. Over the next 24 hours, the levels dropped back to 4. This does indicate that he is nearing or is in the lowest point of his transplant fondly called the basement. 

Obviously, compared to the last time, Xander's ride down to the basement has been much smoother. Emilie and I have been working hard to keep Xander's body from unraveling. Mucositis was a big problem last year that led to much of his discomfort. Large doses of glutamine powder dissolved in yoghurt, coconut oil directly consumed, large supplemental doses of glutathione and multiple daily doses of omega fish oil and vitamin E are paying off in spades!!! Even though no one would ever choose this path, so far, it is WAY better than last time regarding his immediate health and comfort.

Xander has really enjoyed visits from his friends. Right before his classmate Elli and her father walked in, Xander was feeling a bit down. IMMEDIATELY upon hearing that Elli was here to visit (even before she opened the door) Xander was feeling no pain! As it turns out, Elli likes to play Minecraft, too. Xander enjoyed showing her the world he has been working on and Elli enjoyed visiting with Xander and seeing the Minecraft sites. As long as friends are super healthy, they are invited to spend time with Xander. Xander is looking forward to other friends visiting, too. 

Schoolwork has enjoyed an increased focus here in room 21. We believe that it IS POSSIBLE to get Xander's immune system up to snuff for the first day of school in September. The doctors say that it is unlikely that he will be "fully baked" by this time but they would like to see him do it, too. Emilie, Molly and I are all commited to getting him healthy and his immune system reconstituted ASAP. We have contacted Dr. Powell at Oxford Hyperbaric Center and she is prepared to treat Xander whenever the docs allow it. Dr. Connelly (primary BMT physician) said that Xan could start HBOT as soon as his white blood cells are over 500 and upward trendin - currently his white blood cells are undetectable.

Xander practicing Rosetta Stone German

One more thing - Xander received a REALLY AWESOME and SPECIAL gift from EVERYONE that has contributed to his cause. You all are responsible as Emilie and I would not have been able on our own to provide such a gift for a ten year old.

This past Saturday, Xander was saddened that, for multiple reasons, he was unable to play Minecraft with Evan over the Internet. This situation was much to do with not having an antiquate computer available. Funded 100% by you - we were able to purchase Xander a new MacBook Pro on Saturday. This has been a game changer. When I say game changer, I mean it - we could not have chosen better timing.

Emilie and I have used the computer that Xander loves as our biggest ever lever ever. We are really nice about it, but we have been able to motivate Xander to take medication, take walks, clean up his body, get up and brush his teeth, and about anything he needs to be doing with this very powerful lever. Breaching the subject of schoolwork has previously brought us a battle of willpower - BUT NO MORE!!! After I loaded Rosetta Stone German on his computer his butt got motivated and Xander has even started doing lessons without being asked - THANK G-D and thank you to everyone who made this possible.

Auf Wiedersehen,

Aaron

Cinco de Mayo

We celebrated Cindo de Mayo with no infections, no fevers and a home-made meal! WOOT!

Things seem to have been on track for Xander over the past 2 days. All of the prayers and healing energy has been working! We have been very happy with his overall attitude and spirit. He is a really great kid, and when Kristin comes back tomorrow, I am sure that she will be impressed with how he is holding up. He is taking all his meds, doing the self care items that are so important and still does not have mucositis.

We have been sending huge amounts of love, prayers, and positive energy to the donor. We are so grateful that a complete stranger would be so willing to help. He has already told us that if we need more cells that he will give more! (We do not know if Xander will need more cells, they just cleared that with him up front).

Xander's GoFundMe Site has really made a huge difference in so many aspects of his and our life! Thank you to all who have donated on the site and have sent donations our way separately. It is difficult for us to comprehend the success that this fundraiser has had! I want to send a big thank you to the amazing ANONYMOUS donors! Since there is no good way of thanking you otherwise, here is a public thank you! Because of this support, our financial burdens have been helped significantly and we have been able to stay very positive and this is beneficial for our entire family.

We had visits from Xander's SWAT team yesterday, very cool, intelligent  caring and understanding nurses that make inpatient procedures WAY more FUN. We are thankful to have you available to help Xander once again. They will get and keep him comfortable during his inpatient bone marrow biopsy in a couple/few weeks.

Enjoying the weather

Xander has been able to get some time off the pole; so therapeutic with the lovely weather! Getting outside and enjoying spring a bit has been extremely beneficial. A lovely visit from Ms. Tucker and Mr. Banks found their way down to the Fairy Garden and Troll Hollow in the Arb. Thank you both so much for the lovely visit and chat with Xander, he really enjoyed it A LOT!

The Fairy Woods and Troll Hollow welcomes new residents

Hobbes got some much needed play time this weekend with our neighbors and friends dogs. One of them is Hobbes' Aunt Kacey She is a Black Magic Shepherd also. (Stella and Kacey are from same litter, Hobbes is from Stella). They both had a great time in our awesome fenced in backyard.

Hobbes and Kacey

Molly had an extraordinary weekend with her teacher and really enjoyed their time together. Mrs. Abate is one of the most caring and loving people we have ever known. Thank you so much for all you do for Molly! She also got to enjoy face painting at a friend's birthday party today. What a lovely day for pinatas, bubbles and fun!

Intricate Dragon Face Painting

Peace and love to all of Xander's followers,

Emilie

Couple of low-key days

Good Evening,

Days +2 and +3 were pretty smooth. Xander enjoyed getting disconnected from the pole and taking walks outside in the beautiful weather. He has to wear his mask even outside, as he is very susceptible to all infections, have no measurable white blood cells. His side-effects so far have been manageable. The headaches have subsided a bit and he had 2 days without emesis. He is eating like a champ! Zingerman's sandwich, cheeseburgers, cheese, coffee, yogurt, L-glutamine powder (amino acid that helps reduce mucositis), Thai deep fried duck, beer-cheese chips, and Orgain drinks have been sustaining thus far.



He enjoyed a visit from Molly, and we were lucky enough to take a walk in the Arb. He was very winded on the walk back, but was able to get his breath back after resting for a bit. He walked at a pretty good clip up hill the whole way back, probably the longest walk since he has been inpatient.

Xander has also been treated by Dr. Anderson. Using the NAET technique (akin to kinesiology), she works on his body's acceptance and intentions of the new cells. He has been treated by Dr. Anderson since July to work on his body's overall health and well being, she has been key in helping keep his immune system able to ward off the nasty infections.

Dr. Sue Anderson

Multiple people (nurses, friends, family) have commented to us on how great Xander looks. Having a wonderful support system throughout this process has shown so far to have helped quite a bit.

We have a really great support system from so many perspectives! One of those has been through our friend, Laura Shope. For almost ONE year she has been helping us by providing opportunities for people to purchase great Shaklee products, all while directly benefitting our family. This resource has raised almost enough to pay for Xander's secondary health plan every month! This is a huge burden off our shoulders knowing that it is covered! Check out Shaklee's product line or contact Laura where sales benefit our family directly. Thank you!

Sunshine and Stars on 7 East

Peace and love to all of Xander's followers,

Emilie

Day +1

Good Evening,

Today Xander has been doing okay. He had a visit from a great friend, got disconnected from the pole and took a walk outside in the beautiful weather! He also received a very cool Birthday present... a Lego mini figure collection and display box - he absolutely loves it!

Xander had his first dose of Methotrexate today, it was technically considered a "micro" dose. Anything that is considered "micro" in the BMT department is good in our book. This is to keep his existing T-cells from attacking the new cells. He will receive 3 or 4 more doses while he is here. He has had a couple headaches, but has been able to get them under control using multiple methods. He had a great visit from our chiropractor  Dr. Gibson - a MUCH needed adjustment after laying in bed for a week. Dr. Gibson uses an "actuator" on him, so it is completely controlled and Xander is able to give very good feedback.

Dr. Gibson

Of course, Xander misses Hobbes VERY much! A little note came his way today, along with a very sweet drawing to keep by his bed.

Hobbes by B.H.

Peace and love to all of Xander's followers,

Emilie