Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Sunday, December 22, 2013

T+151 BMT Jingle Bells

White Blood Cells, White Blood Cells
Donor Cells all the way
Oh what fun, it’ll be to see
My ANC level today

Red Blood Cells, Red Blood Cells
No infusions for me I pray
Can’t wait to see, what my hemoglobin will be
In my lab bloodstream yet today

GVHD stay away
Oh what fun, to see my skin again

Once all this body hair goes away!

Friday, December 20, 2013

T+149 I'm Dreaming of a BMT Christmas and other BMT Christmas Songs

What  people may not know (although you are all getting familiar with it by now) is that a BMT is not a one day event, or even a 1 week, 1 month or even a 1 year event.  It is a life event that changes you forever, quite literally in fact.  We are nearing our Coleson's 5 month anniversary now and are so fortunate to be celebrating Christmas with him and at home!  Many of our RMH friend's are still there and will be celebrating Christmas there.  From what I hear Santa is very good to all the RMH kiddos -deservedly so!  Though I am sure they would much rather be at home for the holidays.  Coleson's labs this week were all in "range" with the exception of his Hemoglobin which was slightly lower than last weeks and slightly out of range.  We may expect to get another bump of red blood cells if it doesn't turn around.  Even better news came from the cardiologist in that the fluid around his heart seems to be less than it was when we left Minnesota!  Thus they are tapering off the steroids and lasix.  I am looking forward to him being a little less puffy and heavy!  He's getting to be a big boy to carry at 30ish lbs! He is eating like a horse again and has expanded his diet to Oreos, Goldfish crackers, lots of shaved ham and greek yogurt.  (He doesn't know this is actually good for him!) They also lessened the overnight fluids which is helping the overnight diaper changes a little.  Although last night I went to change him and the cool air must off caught him and before I could get the new one on, he had made our bed a waterbed!  People often ask me when I appear to be so happy how do I do it.. well let me tell you first of all, I have no choice.  It's not like I was asked if I wanted a "normal" child or a "special" child.  Second of all, what would happen to Coleson if I did "do it"?  After all, he's the one that is going to have a tough life, why wouldn't I do everything I can to make it even just a little bit easier on him.  Third, not all days are doom and gloom and when we have a "good" day, we need to celebrate it as if it were his last because the reality is, that it could be.  There are a million things that could change on a dime that could take him away from us, he could stop breathing, he could bleed out, his kidneys or liver could start to fail, his heart could become compromised, he could get a fungal, bacterial or viral infection that he won't be able to fight off.  He could come into contact with a kid who has chickenpox or had a live virus immunization.  The list is really endless, so I've learned to appreciate each and every day with my kids.  Also you have to find some time to laugh and make light of the situation, so while some may not appreciate my sense of humor with this...well, they can simply stop reading my blog!  This is my way of dealing with this and if you think it's inappropriate, that's not my problem!  :)  So in the spirit of Christmas, I've put a BMT spin on some classics. Hope you enjoy...

Twas the night of BMT and all through the hospital room
We were all waiting for the bone marrow to turn up soon

The IV lines were connected to his hickman line with care
In the hopes that new marrow would soon be there

Coleson was snuggled all cozy in bed
The rest of us starting to bow are own heads

And Paul in his BMT day shirt and I in mine too
As well as was Peyton and the rest of our crew

When through the door there came a nurse with the marrow
I looked up from my chair and was brought out of my sorrow

To his bedside I flew and picked up this boy of mine
Hugged him as I created him for the very last time

The glow of the light shone down on his eyes
As mine welled up with tears and cries

When suddenly what to my eyes did appear
The bag of O+ blood cells, along with some fear

The nurse hung it and hooked him up quick
I knew in a moment that this was it.

More rapid than enzyme the blood was infused
His body I’m sure must have been confused

Now faster, now quicker, the cells they did flow
Oh cells, oh cells please do start to grow!

To the top of his head to the bottom of his toe
Grow little cells, grow little cells, grow little cells grow!

Then it was over, the last drop of blood ran through his IV line
And spread into his veins like a wild grape vine

So into his body new marrow was there
With the enzyme he needed which made him so rare

And then briefly it was quiet as the crew did go
And left me alone with my new little boy

As I held him close with the look of amazed
I felt him start to tremor and look kind of dazed

He started to get sick and felt really hot
Surely something was wrong was it not?

The nurses I called and sprang into action
I wasn’t prepared for this kind of reaction

They changed him and washed him and gave him some meds
And he soon settled down as he lay in his bed

His body was still, his butt in the air
What he had been through, truly unfair

His little mouth let out a little cry
And mine, well it let out a deep sigh

His hair lay gently on his cute little head
I knew soon it would be gone, this I did dread
He had a broad face, and a little round belly
That shook when he laugh'd, like a bowl full of jelly:

The donor cells went straight to work that night,
And fill'd his body with platelets and cells, red and white

And soon there were would be enough so he could go outside
The chemo, the ERT, we had been on quite a ride

And laying his finger aside of his nose
With his thumb in his mouth he began to dose

And I heard him coo as he fell asleep that night —
Happy rebirth to you son, I know all will be right!

***Our Christmas came early this year on the night of July 24th/25th with the rebirth of our son Coleson via a Bone Marrow Transplant***

On the 12th day of BMT by Doctors gave to me:
12 pre-BMT ERTS
11 nights of vomiting
10 nights on morphine
9 scans/MRIs/EKGs/Echos/X-Rays
8 days of chemo
7 nights with fever
6 nights with blow by
5 IV pumps a pumping
4 intrathecal injections
3 days of campath
2 hickman line surgeries
And a bag of marrow for my BMT

Wednesday, December 11, 2013

T+138 Lights, Friends and Hot Chocolate

Coleson was released from the hospital on Thursday afternoon.  The echo from that morning showed that the fluid had decreased a bit.  We went home on Lasix and Steroids and back to weekly echos.  If the fluid doesn't go away, he most likely will have a "window" put in so that the fluid can drain out into his body and won't be able to accumulate again. Labs on Friday were good but it looked like his White Blood Cells and neutrophil count was trending down and he was really lethargic on Friday so I was still a bit worried going into the weekend.

Despite my worries, we had a nice weekend taking a drive on Friday night to see Christmas lights and did some stuff at our Ranch... (I haven't been there in almost 6 months) and stopped to see Paul's horse before coming home and watching Michigan State (my alma mater) beat Ohio State for the Big Ten Championship and a trip to the Rose bowl.  Unfortunately Arizona State did not fair as well against Stanford so I will not get to see both my alma maters duke it out at the Rose Bowl.

Sunday I woke up early to a cold Arizona morning (It was 56 degrees, some of you might not think this is all too cold for a winter morning), and put on my Coleson's Courage T-shirt for the Hot Chocolate 5k with some of my best friends.  The race benefitted the Ronald McDonald House and we got Hot Chocolate and Chocolate fondue with some tasty treats so it was worth the 5:30 alarm clock.    Then Peyton and I headed to good friend Grant's Firetruck Birthday Party and then to the FIGG Garden Social (FIGG is community garden I am (rather was) treasurer of).  A few of my garden friends designed the Coleson's Courage T-shirt and ran as well.

To my relief, today's labs were much better.  His White Blood Cells and neutrophils were back up, his platelets and Red Blood Cells were back up and though his hemoglobin was just slightly low to range, his reticulyte count was strong which should indicate the hemoglobin will be higher next time.  His next echo is tomorrow and I hope the fluid is continuing to decrease.

It's been a week since Johnny passed away and it was a highly emotional week for those of us close to his family.  Reading the posts and "watching" them from afar go through the grieving process and the funeral arrangements, etc. hits very close to home with me. A BMT is a highly risky procedure but for certain diseases and disorders really the only option available to try to save your child's life.  Though Coleson has reached his second "milestone" of being able to come home, he is and far from being risk free and in fact will never be risk-free.  It won't be until his 1 year mark that they will call it a successful transplant (as long as he's stable) and he will be able to resume some of the activities that he is banned from doing today.

Tuesday, December 3, 2013

T+132 Back in the Hospital Again

So I was a week off last week with the days post transplant.  But my post title was spot on regarding the unpredictability of this thing called a BMT.  It has been a rough past week.  We were fortunate enough to be able to spend Thanksgiving at home and had oh so much to be thankful for this year!  The obvious being that Coleson was able to be home and have this Thanksgiving and for all of you who have made this difficult journey a little less difficult. In so many ways you all have helped us get through this.
We did get news on Saturday that one of Coleson's BMT "Brothers" past away.  We didn't get to spend much time with Johnny before he went into the hospital for his BMT but we did with his loving parents Karen and Mark and his beautiful sister, Molly.  It doesn't take but a day to become "family" with those at the Ronald McDonald house and the Nides family was no exception.  We hurt for their family.
Meanwhile Coleson and I went for his weekly labs Monday morning with mixed results.  Magnesium level still low and more importantly his White Blood Cells and ANC (neutrophiles) were very low.  We had to go back in the afternoon for his echo and they wanted to give him a booster shot of neuprogene also.  So after his echo we went back to clinic to get his shot and when we went back to cardiology they Dr. said he wanted to admit us to the hospital as the fluid around his heart was increasing.  Since it was after 5:00 we had to go through the Emergency Room to get admitted and it took about 3 hrs.  Thankfully the care partner at clinic gave me some cookies crackers and drinks since I was totally unprepared for this. It took another 3 hours to get through all the initial procedures, meds, etc.  They pumped him full of lasix, magnesium and back on steroids in hope to dry the fluid out.  The echo this morning showed very little change but cardiology doesn't want to go in to drain it quite yet.  So we hang out here for a couple more days to see if it starts to decline.  They also gave him more IVIG today for his low counts.
It's been 160 days (including those pre-transplant) of this roller coaster ride and it is starting to wear on me. It is very disheartening to be getting re-admitted this long after transplant.  It seems like every week we have been dealing with one thing or another.  I know others have had similar experiences post transplant and then there are those that didn't even get to see day T+132 and then there are others that have been removed from their homes for well over a year trying to mend their sick child.  So when I think of those families, I am reminded how lucky I am to be holding my little boy and that we are at least in our home town even we are not at home.
On a happier note, a BMT "sister" is going home this week.  Ariauna was one of Peyton's best RMH friend's and Nathalie her mother one of mine.  She has done really well and we are happier for her.  Another RMH friend Karee Jo who endured a grueling 8.5 hr surgery two weeks to remove several tumors also was back at the RMH providing much needed spirit after a tough weekend.  I am very happy for both of these 2 little girls and their families.