T+9 The Storm Hit

Right on schedule, the "storm" hit yesterday.  They said the roughest days are T+7  thru T+21 and as if on cue, the mucositis (chemo strips away the lining of mouth and GI track leaving sores and swelling), the drooling, the vomiting, the chills, fevers, shakes.  Yesterday was T+8 but technically, it was only 7 days after transplant considering his transplant got delayed until 1:42am.  His breathing is loud and labored.  He is retaining fluids a bit.  Not his best picture day today.  Good news is that is WBC count went from <0.1 two days ago to 0.1 yesterday and today.  He eventually needs to get into the double digits so you can see how far he has yet to go.  He's not able to do much at this point but cuddle and sleep and watch Umi Zoomi.  Despite all this, the Dr.s say he is doing very well.  It makes me feel for the families who have it worse than us and appreciative and proud of how strong he is. 

Peyton is off with Janna and her grandkids at Como Zoo. We are trying to keep her away from the hospital until brother looks and feels better.  She is having so much fun with the kids at the RMH that I don't think she wants to come anyway. We are planning on going to the Minnesota Zoo on Sunday with Dina.

I was very fortunate to have my 3 best friends from college (Michigan State) here for a quick visit.  The timing was perfect as it gave me a good bump of support right before the hardest part.  Not sure how much I will want to leave him over the next couple weeks.  Though Rachel (our nanny) has been a big help trading off watching Peyton and Coleson.  Paul of course is capable too but he does better at playing with him and right now he needs more cuddles than play time.  It's best to have him stay with Peyton.

T+7 Superstar Coleson

Today the Dr. gave Coleson his Superstar award of the BMT ward.  He really has been doing well; getting out of bed to play everyday and still drinking and eating at least one little thing a day.  Yesterday it was a Cheeto, the day before a gummy bear.  However,  T+7 thru T+21 are also notoriously known to be the hardest days.  The new marrow has not yet engrafted and his own has been depleted.  His white blood cell count is less than 0.1 (normal range is 6.0 - 17), platelets are at 16 (normal is 150 - 450).  Needless to say he is petering out a bit.  He has lots of energy for cuddling but not much more than that however he still managed some play time today.  This is the critical time in the BMT process so we really need your prayers over the next couple weeks. 
My best friends (Emily, Nikki and Jaimee) from home (Michigan) came for a short visit and we pampered Peyton taking her to lunch and her first haircut and mani-pedi.  She wanted a short haircut (but not as short as Coleson's) but I only let them take 2 inches.  Other than that I fear it's the calm before the storm and someday soon we he will start to get more physically sick. 

Bald and Beautiful!

Today we had to shave Coleson's head.  It was his first haircut and he didn't like it at all!  I think he wears it well though!  He's been doing great though a bit more restless the past 2 nights and just seemed a bit more uncomfortable so we upped the Morphine.  We also got a bit of a jolt from our post BMT bliss when his CSA levels came back abnormally high.  CSA is the graft vs. host disease drug cyclosporine.  So they had to redraw labs and try to take a peripheral lab straight from a vein...which is difficult due to his tiny veins and thick skin.  It took about 15  to 20 minutes to due a toe prick and slow drop by drop collection to get 1 ml of blood.  Turns out the lab came back in normal range which means most likely it was a nursing mistake on the original lab draw.  She must have taken it from the line where the meds go through.  I'm so glad I put my son through  20 mins of pain for a nursing mistake!  We had a Skype night tonight with Cathie, the Nelson's, Lauri, Kim, Suzette and kids, and then grandma and grandpa.  Coleson's got all fired up and played hard for an hour!  Who forgot to tell him that he just had a BMT?!

T+3 So good to be on the "+" side of things!

Had some good days since the BMT.  He has slept well and hasn't gotten sick.  He's even gotten up and played a few times and enjoyed some breadsticks and apple juice last night.  We were waiting for him to show us his dinner again last night but he held it down like a champ.  Docs say he is doing well.  It takes about 7 days for the new cells to start growing so they won't even start taking blood cell counts until next Wednesday.  I am so proud of my baby boy. His hair is starting to fall out on his pillow and I know the day will be coming soon that we will have to give him his first hair cut.. I love his hair and hope that it comes back in the same color.  (He could pick up the color of his donor or a a mixture). 

Peyton misses home and all of her friends.  I showed her the BMT day pics of her friends and she got a little sad.  It will be a long 100 days for her.  There are a lot of kids at the RMH but some are only here for short stays, some are in & out of the hospital and some are just not as outgoing and independent as Peyton.  I hope she meets a friend soon that she can look forward to seeing regularly.  We are going to my friend Nicole's house this afternoon to play with her girls and jump in a bounce house that her neighbor is putting up. 

Grandma and Grandpa left late last night.  Things are going to seem a little calmer for them considering they've been with Peyton for the past 4-5 weeks. 

Paul got to play golf yesterday (for work) but it was probably the ugliest day we've had here since arriving.  It was cold and rained off and on all day.  Today has returned to it's sunny self, a bit colder but sunny. 

The support from all of you has been fantastic.  I wish I could bottle up all the prayers and love that all of you are sending and have him drink it down.  He would be the healthiest little boy alive.  Don't be afraid to call us.  If we can't take your call, we'll listen to your voice mail and it will brighten our day.  We're also setting up a few Skype (& facetime) dates with friends. It's a good way to get to see Coleson!

My phone number is 480-321-9473 and Paul's is 602-284-9271 Skype:  PaulandCaraDavid

T=0 and T+1 Our little boy becomes a new man!

At 1:42am (11:42pm Phoenix Time) our little boy became a new man..quite literally (the donor was a 39yr. old male but that is all we know about him).  I'm not sure which "birth" I cried more at and I didn't even take any pain meds for his first birth.   It was a long day of waiting as we were originally told it would be at 1:00pm but by yesterday morning it had changed to 4:00 - 5:00pm.  Then it changed to 7:00 - 8:00pm.  We were getting nervous when they couldn't even verify that the marrow had arrived in Minneapolis.  Due to donor confidentiality the process of donating, transporting and transfusing blood marrow is topic secret.  I don't even think the Government knows the details of these logistics!  So we waited, and waited and waited some more.  Fortunately by the afternoon he was playful and happy again.  Finally at 1:00am they said that they had the blood at the hospital.  It was a very high concentration of blood cells and so they actually were able to store 2 more bags of it that Coleson didn't need and hopefully will not need in the future.  There is a chance they may have to transfuse more if it doesn't engraft but we are praying this will not be the case.  That is the one benefit of marrow vs. cord blood that you can transfuse more if needed.  The transfusion was over by about 2:30am.  He had a rough rest of the night; running a fever, vomiting, bad diapers, and overall just seemed in pain.  They are starting morphine today.  Thank you to all our Coleson Courage Supporters who sent us pictures in your BMT Day T-shirts.  Thank goodness the marrow arrived when it did or those t-shirts would have been outdated!  (We are using Arizona Time). We finally got to hang the medal of honor (The BMT sign) on our door. 

Grandma and Coleson waiting for blood marrow

T-1 and The ABCs of MPS

Tomorrow is the big day @ 1:00pm...  Unlike a surgery, it's a pretty uneventful blood transfusion.  We could use uneventful as the chemo is finally kicking in and he is getting sick multiple times a day. It takes about 7 - 14 days for his body to accept and start reproducing the donor cells (engraftment).  These will be are hardest days so we will need your prayers over the next 2 weeks more than ever. 
He is less active but did rally when he saw his sister for the first time in 3 weeks.  Peyton just brightens the days.  She may be his best medicine!

We have also acquired a new language.. here are our new ABCs: My spelling may not be accurate!

A is for Aldurazyme (The Enzyme Drug)
B is for Bone Marrow & Blood
C is for Chemo (Campath, Cytoxin and Busulfan) & Cyclosprine (Anti-rejection med)
D is for Donor (who we are forever grateful for) and Dressing Changes & DNA (His will change)
E is for Enzyme (what he lacked naturally) & Engraftement
F is for Fluconazole (Antifungal drug) & Flushing (g-tube and Hickman)
G is for Genetics & G-Tube & Graft vs. Host Disease
H is for Hickman line and Hurlers (MPS I) and Hemoglobin
I is for Intrathecal (Spinal injection) & IVs
J is for Juice (specifically apple which Coleson has grown fond of)
K is for Keppra (anti seizure med)
L is for Lysosomal Diseases (storage diseases ~50 rare inherited metabolic disorders)
M is for mucopolysaccarides (MPS) & MRIs
N is for Neuropsych Evaluation (Developmental Specialist)
O is for Orphan Disease (like MPS those that are so rare they do not get a lot of funding) and O+ (His new blood type)
P is for Protonix (Acid reducing med) & Platelets & Paul Orchard (Sr. Dr. of BMTs for MPS)
Q is for quiet (the hallways of the BMT ward since patients are confined to their rooms)
R is for Red Blood Cells & Rare disease
S is for surgeries (I've already lost count and there will be more in the future)
T is for TPN (Feeding through IVs) & Transplant
U is for Ursodiol (Liver protectant drug) & University of Minnesota - Amplatz Childrens  Hospital
V is for Veno-occlusive disease of the liver (Possible complication of Chemo)
W is for White Blood Cells & Wes Miller (our BMT Dr.)
X is for X-rays
Y is for "Y?"
Z if for Zofran (Antibiotic)

T-3 Starting to slow down...just a little

Doses of chemo to date = 17 
Doses of chemo left = 6
BMT in 3 days

Coleson is starting to slow down, just a bit.  He's gotten sick the last 2 days but seems to bounce back afterward and it is usually predicated on something in his stomach, either food or meds.  So he is being a cuddlebug today (which I don't mind) but still smiling and playing as well.  We know the worst is yet to come and it typically is 7 - 14 days after BMT when the new marrow hasn't engrafted yet and he doesn't have his own anymore.  We are kind of anxiously awaiting this day just for it to be behind us.  I am glad though that Peyton will get to see her brother feeling and looking good before she sees him at his worst.  My parents are bringing her "home" tomorrow.  Last night Rachel stayed the night with Coleson and Paul and I stumbled upon fireworks marking the end of the Minneapolis Aquatennial.  We were in the hospital for July 4th so it was nice to get to see them this year, though it is really hard to celebrate much these days.    I skyped with Janice (AZ friend) today which was a nice break from my day.  If anyone else would like to Skype us, we are at PaulandCaraDavid.