Easy Going Day

Xander and I had a great day spending time together and doing various things.... including air hockey. I lost some more :( but he won :)

His counts are headed in the right direction and he hasn't had to have blood products in 3 days! The Docs were happy to see those numbers. We'll hope and pray for more upward trending numbers tomorrow.

Today he got to learn how to give his own Neupogen shot. He practiced (for hours) on the "practice skin" and was able to use a real needle to do this. He loved making the "practice skin" get a big lump in it and then pop it with the needle. The nurse gave him plenty of time and information for doing the shot himself and he seemed very ready. Long about 2pm... when it was time for the shot, he abruptly decided that since the nurse was a good stick, that she could do it and he would just be fine with that! He did a great job, didn't complain at all - I think it was the best day for this since he started them. We'll see if he wants to do it himself tomorrow.

Oh, and one more thing - he hasn't had to have pain meds in over 48 hours. Yay.

Here's to a good nights sleep and we hope everyone enjoys the weekend.

Peace and Love

They're here…

Little bone marrow stem cells have officially been given their Certificate of Occupancy by Dr. Craig. Xander DID NOT need either red blood cells nor platelets this morning. All blood counts are up or the same, meaning that his new bone marrow stem cells are meeting or exceeding the need filled by natural cell loss. In addition, the past couple of days have seen a lessening of his GVHD (controlled) related skin rash. He still won't eat very much, so a few more days of I.V. nutrition while we work on intake levels.

Here is a video from a few days ago (March 27). This is from his 8 sausage 3 slice of french toast day!

Here's an awesome card that Gabe, an employee at Zingerman's wrote for Xander - sent along with soup from friends who's daughter works for Zingerman's, too.

Funny (or not so funny), Xander has had a slew of student nurses assisting in his care - he tests their skills and quizzes them on the functionality of the Omni 4000 pump or holds his breath to make his blood pressure skyrocket. He always gets a laugh and thankfully, thus far, he has not done this during inappropriate times. Also, Xander has decided that he wants to do his own subcutaneous Neupogen shots - the nurses always do this that or the other that makes it hurt so… well you get the idea. Xander is raising the bar on self-help for eight year old kids.

Peace and lots of love to all of our supporters and followers,
 

7 East Love

After living in the hospital for 21 days (so far), we have to send a HUGE thank you out to the outstanding, wonderful, caring, funny, special and smart nurses on 7 East. They all handle Xander with such care and compassion - they are always on his side. I have hardly heard them say "no"  - except for one time every day.... about 2pm when it is time for Xander's Neupogen shot. He always asks if he can skip it, and they have to say no. This is absolutely his worst time of day, he dreads it. It hurts and is not fun. He has made it through every one though, and every nurse (even if they get the lowest or highest rating in his book) tries to make Xander feel comfortable in any way that they can.

We thank you so much - and it is such a pleasure to get to know all of you outstanding human beings! Our appreciation for who you are and what you do grows more and more every day.

Love,
The Salsitz's

New Cell Growth Confirmed Day +15

Today, the Docs have confirmed that engraftment is happening. It takes a few days... until they see a trend to confirm the suspicion. This is excellent news!

Xander has a LOT of energy today and his talkative and intelligent personality is shining through. We are very excited and continue to hope and pray for the trend to continue.

He started eating again and we just got done with 2 games of air hockey (it's been 8 days since he was last at the table).

He has had a rash, typical of new cell growth, that is now starting to go away. The going away part is very important, as we are watching very closely for transplant rejection or gvhd (graft vs host disease).

As long as he can keep eating, he will come off the TPN+Lipids by the end of the week and we are talking about getting him back on his daily shake (that we eat at home).

Beautiful news for a beautiful day. Picture is of Xan this morning.

WBC: .9 or 900
ANC: .6 or 600

Peace and Love

P.S. Happy Birthday Calvin! Xander misses you very much!

Better Day

Xander didn't have to take pain meds all day and was able to get up and walk out of his room multiple times!

What a big difference in attitude also! He just started the TPN+Lipids (this is electrolytes and fats) I.V. This ironically, when he just started to get his apetite back!

We'll update more tomorrow.

Good Night

Day of Rest +11

Good Evening,

I was with Xander most of the day, Molly and Aaron got some time together. We also had some time all together at the hospital. Molly saw her friend Stephanie in "Child Life."

Xander was in bed all day with a fever, pain meds, and maybe the start of new cell growth. We will see where his counts are at tomorrow. He can't/won't eat, so we will start TPN-Lipids tomorrow (this is expected) and we will keep his GI tract functioning with chicken broth from Zingerman's and some jello/fruit cups. His throat is very sore, so that is where the majority of his discomfort is coming from at this time (besides the whole process of getting a bone marrow transplant, of course!)

He is rocking through it though. Another day, he fought down fevers (ice cold compresses) and took his meds. He is doing it. Like a rock star!

Thank you to the second grade class at RSSAA (actually, a thank you to the whole RSSAA community).

A thank you also to the 2nd, 4th and 5th grade classes at Cameron Elementary in North Carolina - what a beautiful collection of items! Xander has enjoyed them very much and they brightened his days. Thank you.

Looking forward to seeing Xander get out of bed tomorrow and spending some time with Molly.

Dog Day +10

Xander has been blessed with a lot of good days so far, but yesterday was not one of them. All of the issues he did have were expected, however.

Tired, Fever, Vomiting, Pain Meds (bigger dose than before) and hair loss to name a few.

Aaron was there with him all day and night. I got Molly from school and took her to the doc for her strep throat test (negative and will find out culture this a.m.)

I am expecting another not so good day, today... hopefully he'll prove me wrong!

Please keep sending cards and please don't forget about Molly.... there has been a couple of people that have sent cards for Molly (thank you).... maybe a couple happy cards would help her through the week.

These times are hard, but we keep praying that the engraftment will be successful.

BTW - did I mention that Xander is a Rock Star?!

Today, I'm going to make him laugh, even if it means singing and dancing to "Squirrels" by Dr. Demento.

Lego Dreams

Xander is sleepy today. His hemoglobin level is low and therefore he is tired. He woke up this morning starving. I gave hime an hour and a half full body massage using essential oils from Great Lakes Sacred Essences. He was like a puppy getting a scratch all over❤. He proceeded to eat 3 breakfasts (4 sausages, 2 French toast, and two FULL bowls of cereal). Then he passed out as pictured.

Molly was exposed to strep so we have an appointment to get her throat swabbed. If she does not have strep, she will stay with us this weekend.

The other pictures are from two days ago when he got cut loose.

Peace,

Xander and The White House.

Xander is cut loose for the next 1.5 hours. We are going for a walk ❤

Here is a picture of Xander's latest Lego Creation.

Wow, thats really cool...

....I didn't know our I.V. poles went that high! Many Docs, Nurses and other Staff have commented on the cranes. They all get a big smile on their faces.

The heart and soul that went into this is truly amazing! Xander is very proud. He very quickly tells everyone that it is "more than 1000 cranes"

Peace to all of you crane folders. What a beautiful gift! Thank you!

Going strong on Day +6

Xander is doing well. He is eating and keeping his protein levels up. We took a 40 minute walk last night.... and tonight will be very special because he gets disconnected from his IV pole for 2 hours (big shout out to Tracy for advocating on his behalf).

We have been in the hospital for 12 days and we are doing our best to make the most of everyday.

You all help us more than you can imagine.

Peace and Love

Ouch or "Hello Apoptosis"

Xander woke up shouting last night with excruciating bone pain in his legs. He received his first dose of pain meds. Emilie read him a fairy tale and he was able to go back to sleep.

Unfortunately, this is expected and par.

Peace,

Crud…

I got a bug somewhere. I fell asleep later in the morning while Xander was getting 30 minutes on the iPad… 2 hours later I felt bad and Xander was quiet as a mouse - still playing on the iPad. Then, while Xander played air hockey with a volunteer, I slept more. I checked my temp multiple times (98.5) and thought it was the bites of delicious greasy breakfast from Angelo's Xander didn't eat that I did. Well, needless to say, we had to change our plans around.
I will not return to the hospital until 24 hours after my current 100 degree fever breaks. I am mostly feeling better, but not seeing my son for a couple of days makes me sad. I DO have tons of work to get done, however. Ten nights on the pullout makes this dad weary.

I can not thank everyone enough for the awesome love and prayers. Xander is handling himself with courage and intelligence. He impresses me everyday and it fills my heart with pride to be his dad.

One more thing - we finally got Liz today. She is Xander's classmate Hugh's aunt and she is super awesome. Having a connection to the "real" world is important for Xander. He was excited and appreciated her care.

Peace,

Air hockey

I finally tied Xander in air hockey!

That makes me 0-65-1

He is doing well today and eating. Will post more later.

Xander thoughts for the day

It's not as bad as I thought it would be.

10-11minutes after they started the transplant, I felt perfectly fine

2 days later...feel great, already played 3 games of air hockey and won them all!

There are a lot of medications to take

Merri's Great Lakes Sacred Essences really help. My favorite is Miracles.

Love,
Xander

Day +2 has been good

Good Evening,

Xander had a so-so day yesterday, Wednesday. He had multiple episodes of throwing up and felt yucky most of the day. He did let the Docs know that he is a "son of a son of a son of a sailor, so he throws up like a man and handles it fine." This made us crack up and the docs too. What a funny kid!

Today, Thursday has been completely different - he has eaten very well and is in great spirits.

We had an exciting evening in the hospital with the tornado warning. We happened to be playing air hockey when the warning was announced, so we got to stay in that room while all of the other patients were wheeled into the hallways. The warning lasted almost an hour and a half, so we really lucked out!

Hoping for a quiet evening tonight while we wait ever so patiently for the chemo to finish it's job (hair hasn't fallen out yet).... it will be a couple more days until the cells exposed to the chemo have finished their existence in his body.

Your prayers are helping so much.

Peace and Thank you to all that are sending us energy.

--

The daffodils are from Xander's 4th Birthday blooming in our garden.... and this is him today.

Transplant Complete!

The new cells arrived at Noon today. The process of unfreezing them and getting them ready took about 15 minutes or so. At around 12:19 they started the transplant and it took about 11 minutes total!

Xander asked at the very end of it - "was that my bone marrow transplant?"... while Aaron, me and Kristin (nurse) had big sweaty pits!

Xander's White Blood Cell count is 0. This means that he has no ability to fight off any type of infection. We are being UBER careful with everything and everyone he comes in contact with.

We wait and pray that the bone marrow cells are accepted into his body and start to work. It will be 3-6 weeks before we have an idea if the process is working.

Thank you for your prayers and we will keep updating.

First picture is of the blood coming out of the nitrogen tank. Second picture is of Kristin and Kerri injecting the new cells. The third picture is of Xan at the end of the transplant.

Day -1 Almost Complete

Good Evening,

Xander has completed the conditioning treatment for the transplant. He is in good spirits and happy to be off the chemo drugs. He is also done with the little bunnies.... they have hopped away now.

We have met a lot of wonderful people here at Mott and we have an outstanding team of Docs.

One of the main issues so far is getting Xan to eat - he keeps saying that he is not hungry, although we know that if he was under normal circumstances, he would be eating like a horse. We will be logging all of his intake now, just to make sure his nutrition is good. He cannot eat anything raw and cannot have any probiotics. He prefers salty foods at this time and strong food smells make him nauseated. There is a very delicate balance that must be achieved and monitored during this time. Sandy is the BMT nutritionist and is awesome to work with.

Tomorrow is Transplant Day - Also known as Day 0.

The Docs have given us a heads up that it is mostly anti-climatic and lasts about 1/2 hour. They say that the preservative used in the cord blood smells like creamed corn and our room will probably smell that way for a day or two. For those of you who don't know - the transplant is just like a blood transfusion.

Then we wait and help Xan through the "dog days of transplant."

We have received so many compliments on his room - a big shout out to all of you who made that possible. The art work gets a LOT of attention! I even have a request from the Child Life Center (people who keep the kids entertained) to teach them how to make window stars.

Just a quick note in the picture.... the chair is yellow and the light in the background is yellow - but Xan is NOT yellow (yay!).

Your prayers are our strength.

Peace and Love to you all.

Molly

We all really enjoyed having Molly with us yesterday. Xan was able to antagonize Molly a bit too, so that was great for him 😜

Molly has been in great spirits at school and at Grandma Peggy's. She is keeping a good schedule and likes her room there and the polka dot theme.

I took her out to JJ's for dinner (quick note that we don't eat there very often) and while we were in the restaurant, she said "this is a very special treat Mom!" She danced around to the 80s music and made funny faces.

Stay tuned for her next adventure... more details later.

Please keep us all in your prayers.

Peace and Love

May the force be with us

Highlight of my day too!

Saturday went well. No vomiting and some special visitors stopped by!

We also enjoyed a day full of air hockey. This is VERY therapeutic for Xan, he loves it!

Thank you to all of you for your prayers.

Peace and Love

Wascilly Wabbits

Today was the first day of rATG. The dose was started at 1000 and will finish running at 1900 - 30 minutes from now. This morning went okay but he has been feeling worse and worse since noon. This is par and is very expected. After a couple of bouts of puking like an old sailor this afternoon, his fever went up to 104.1 and has been up for an hour. They are going to do a chest x-ray after culturing all three ports for aerobic and anaerobic bacteria. My son, like me loves water and has been begging to take a hot shower. As soon as they unhoo Just realized that they aren't going to unhook him as they are also starting cefapime, at least until the cultures come back. Finally, the kinetics came back and the busulfan was not active enough so the next two days dose will be increased by 90%!

The picture is of Xander feeling pooky, but not too bad. The nurse is Tracy and she is AWESOME!

Feeling good today

First doses of chemo went fine this morning. Lots of blood draws to send off to Seattle for kinetics.

Xander has lots of energy!

Molly had a good start to the morning, thank you to Grandma and Rene M.

T-0H30M

The schedule had been pushed up. Xander just got his blood drawn and the nurse casually dropped that fludarabine will start at 5 & Busulfan at 6.
I let Emilie know so she could move her day up, too.

T-05H40M

Super is sleeping now! He was a total antagonistic spazz today❤ We warned Molly this morning and she said it was okay if he antagonized her. They were at each others throats all day - each trying to get the other's goat. OMG! Way over the top! Of course, both think they "won". ❤

Move in went really well except that I showed up with multiple hand carts of stuff but no patient. Betsy H. met me in the hall and said we were being sought out. The doctors were waiting (not in the plan) so Emilie got Xan here in five minutes. Of course, the doctors didn't rush in - hurry up and wait.

Dianne G. & Kelly H. (David A., too) were AWESOME. I know she will kill me, but packing took all Emilie had to give in this 24 hour period. Fortunately, we put a shout out for some Waldorf inspired decorating help and Dianne and Kelly came to the rescue. For those of you who know these two, the subject of perfection came up… as Dianne was hanging perfect (they ARE better than excellent) hand folded window stars. I'll take some pix tomorrow and post. There is even a watercolor dragon on loan from the art teacher! The room is wicked AWESOME! If anyone drives up the hospital drive at night, it it really easy to pick out the Waldorf kids room on the corner of 7E.

Xan will have his blood draw and weigh-in early (0500) and the the first chemo at 0600 so they can get kinetics from Seattle by the next day's dose.

Thank You everyone for the prayers!

Peace & Love,

A little fun in the sun

Moving in later today.....enjoying 60 degrees now.

T-48H00M THE COUNT HAS RESUMED

********************************
* NOTE: THE NEXT PLANNED HOLD *
* IS AT T-03H00M *
********************************
THIS IS THE RE-ENTRY POINT FOR 24 HOUR SCRUB/TURNAROUND OPERATIONS

XANDER READINESS EVALUATION
ET READY FOR BUSULFAN & FLUDARABINE LOADING
rATG LOADING

MOMENTARILY CYCLE MAIN & REDUNDANT CIRCULATING PUMPS - NOMINAL

INPATIENT CHECK-IN SCHEDULE BENCHMARK 07MAR2012
TIME: TBD

CAPSULE LOCKDOWN SEQUENCE INITIATED - HOUSEKEEPING COMPLETE
HSCT READY ROOM PREPARATIONS NOMINAL

STANDBY FOR FINAL SYSTEMS CHECK AND DECORATING CAPSULE

Just double checking

After Xander said his throat has been really REALLY itchy and driving him crazy, I called Dr. Connelly and Nurse Jenny called back and said to take him to our Pediatrician, Dr. Kucera and get a throat culture. So, here we sit.
Realistically, it is a combination of intubation irritation and the side effects of Vanco - so no worries.

Home and resting

Xander is home and we are happy he is feeling well. We start IV antibiotics at home this evening. Every 8 hours and it takes 3 hours (or so) to complete the dose. He can get up and move around, the bag can be easily transported.

If we stick to the schedule, we'll head back to the hospital on Wednesday to begin treatment.

Balloons from Jasmine ❤

I'm looking forward to going home i am taking my last dose of vancomycin and cefapime at the hospital i will be on them at home in grenades.

Jasmine sent me balloons they really cheered me up❤

Love Xander❤