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.

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