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.

Tuesday, November 26, 2013

T+132 The only predictable thing about a BMT is that it is unpredictable!

Am I happy to be home, "yes" for many reasons, is it harder to be home "yes" for many reasons.

I find I am busier at home than I was in Minneapolis. Everything was "contained" in a 2 miles radius there and our nurse coordinator... well "coordinated" everything for us including pharmacy and other doctors appts. Here the hospital is 25 mins away on a good day/time and we have been there multiple times each week including this one.  The first week back wasn't too bad, we had our initial consultation with the BMT Dr.s at Phoenix Children's along with our normal lab work and then had to go back for his weekly echo and repeat labs since some of his numbers were low and we had medication adjustments.  Aggie was here that week with us so it was nice to have her along for those appointments.  The following week we again had our normal Monday morning labs and met with his assigned BMT Dr. but due to low magnesium had immediate IV infusion.  Low magnesium can cause seizures so we also started on overnight magnesium infusions.  I'm such a pro at hooking him up to his IV meds they didn't even need to show me how.  Then again another trip for an echo and repeat labs.  A trip like this is Minneapolis took me an hour tops whereas now it may take 3 - 4 hrs.  Repeat labs still showed low magnesium and now potassium so we added potassium to his nightly infusions.  And we had to follow up with repeat labs on Friday.  Friday's labs showed all his electrolytes were now in alignment (but we still are keeping the nightly infusions of magnesium) but all of his CBC numbers fell; his white blood cells, his red blood cells, his hemoglobin and his platelets.  Not much left in the blood but plasma.  So the Dr. ordered blood and for us to be prepared for infusion on Monday.  This past Monday we had labs, met with the BMT Dr., met with Cardiology for the ongoing pericardial effussion (fluid around his heart) and another echo.  The fluid is still there and maybe slightly increasing but we are done with the steroid treatment so he recommended an ibuprofen regimen along with an increase in Lasix (diurectic). The problem with Lasix is that it has an adverse effect on the kidneys since essentially its purpose is to dry the system out and it also has an adverse effect on the electrolytes.  So can't wait to see what that does to his lab work tomorrow. Actually it is tomorrow already as I did not get this posted yesterday so his numbers are even lower today and he is hooked up.  His blood type has officially switched to donor blood type.  
We will spend 6 hrs getting blood and IVIG, a white blood cell stimulator.   You wouldn't tell from the outside that he is running on such low "fumes" as he is happy and energetic and feisty as ever!  Scratch that, today his breathing is labored and he was restless all night.  He could use lots of prayers today!

 Oh, and I found out when I tried to get his refills at my local CVS, that they are all compounded meds so I have to go to a compounding pharmacy and it took them nearly 3 days to get them refilled, meanwhile he went without a couple of them for a day or so.

I find I miss my RMH family and just being able to talk to the other parents about my day and the challenges and finding comfort in the support that they and that house brings.  We text and keep up on facebook but it's not the same as being with each other in person.  Some of our friends are not doing so well and it's also hard not being there in person to comfort them.  
Paul and I went to the PCH RMH house yesterday to drop off some soda tabs and ask about volunteer needs.  It is much smaller and hotel-like.  Not the "homey" Minneapolis RMH that we were fortunate to stay in.  My Phoenix friends have done a great job at welcoming us home and supporting us here including a mini-welcome home party in our driveway with a sign and balloons, along with organizing a "Take them a Meal" plan, having Peyton over and just simply calling to check in.  Others have helped run errands like grocery shopping and picking up prescriptions, etc.  I don't know how I would do all of it on my own and am grateful for all the wonderful people in my life that continue to help us now that we are home.

Meanwhile, Peyton is having a hard time adjusting to life without 24/7 friends.  She is so social and loves her friends and loves to play (the RMH house was a dream palace for her.. it even had a 2 story indoor castle!) and is constantly asking to go over to friend's house.  The two weekends were pretty packed with Birthday parties including her own (she got roller skates) and visits fortunately but it slowed down this past weekend.  I did get her into a pre-school two mornings a week so that is helping but there are still 8 hrs in her day that she is not with friends.  She blended right in with the other kids at school though.  She had to grow up this past summer much like I had to when i was her age.  She talks about Bone Marrow Transplants, hospitals, X-rays, bones and shots like it is second nature.  She also talks about death and dying and asks what that means.  I learned that the hard way at her age and I hope to spare her the same.

Otherwise we are trying to get our house back in order, we've made to do lists and Paul is doing a good job this week knocking out his items, I am falling short on mine.  We also have lists for when my parents are here next which will keep my Dad busy and happy.  We got our X-mas tree out and up this past weekend and put on the Christmas music!  Normally I don't like to do this prior to Thanksgiving but we have 1 less week between the two holidays this year and it just felt like we could use that extra joy this year.

Lastly, two people close to me lost their own children in the past month (not from the RMH). One who's child went through a similar (but not the same) journey as Coleson and another very unexpectedly. My heart goes out to those parents and families and their loss hits me extremely hard.  I have tried to prepare myself for that possibility, repeatedly every time we face a new challenge, and it really is unimaginable.

This may seem like a somber post but actually I am doing OK.  Is it extremely difficult and tiring, Yes, but I am surrounded by lots of wonderful friends who continue to stand by my side and for that I am grateful.

Wednesday, November 13, 2013

T+112 Ronald McDonald House Donations Doubled on Nov 14th & RMH Video featuring Paul and Cara

I don't know if I shared this Video on my blog with Paul and I talking about how the RMH and their volunteers helped us - both of us holding back tears. There is also several cameos of my family and our new family/friends.  They even used my line to summarize at the end.. It was INVALUABLE.  The RMH Oak street starts about 3:40 mins into it.  

Please see this amazing opportunity to have your donations to RMH Upper Mid-West doubled on Nov 14th.  If you were at all considering donating to this organization Nov 14th is the day to do it!

 Give to the Max on Thursday, November 14

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ronald mcdonald house families are better together

Families are never required to pay for services and thanks to your support, we are there for nearly 5,000 families a year. Read our amazing family stories
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As you may know, this Thursday, November 14 is the annual Give to the Max Day for Minnesota non-profits.
Last year on this day, we raised over $23,000 to help families with sick or injured children focus on what’s important: being together when family matters most. We would love for you to help us do it again.
At the Ronald McDonald House, families are never required to pay for services and with your generous support, we continue to be there for them when they need us most.
You can literally double your donation
Thanks to the generosity of Johnstech International, every dollar you donate on November 14 will be matched (up to $12,500).
Additionally, every donation gives us the chance to win even more money through random drawings and power hour contests throughout the day. 
Schedule your donation
And this year, they’ve made it so easy. You can schedule your donation. Go to our Give to the Max page and look for the checkbox that says "Make this donation count for Give to the Max Day." The donation will be deducted from your credit or debit card at 12am on November 14.
As always, we thank you for your support as we work together to create a caring community of support for families going through the storm of a child’s illness.

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GIVE to the MAX Day

Give to the max 2013

Your donation is doubled!


Thanks to the generosity of Johnstech International, every donation will be doubled (up to $12,500).


This year, it's more convenient than ever. You can schedule your donation before the day. Look for the checkbox that says "Make this donation count for Give to the Max Day."

Friday, November 8, 2013

"We're coming home, We're coming home, tell the world we're coming home!"

We're "Leaving on a jet plane"...

"No time to dilly dally, we got to get a going"!

(quite the combination of song lyrics from 3 very different genres/songs).

Our  journey isn't over by any means, this was just the beginning!

Tuesday, November 5, 2013

T+104 Still here for the snow

Day T+100 came and went and we did not get to go home as expected but we celebrated the day none the less. Coleson got released the Saturday prior to last but the still has some fluid around the heart so the Dr. put him on a month long steroid treatment as well as Lasix (diuretic) to try to try up the fluid.  In addition, he was put on more meds; antibiotics, inhalers, flonase, protonix on top of his existing 8 or so.  I have lost count of the number of meds he gets now.  He is having regular echos which still shows fluid but has remained stable for the past week.  He has another echo tomorrow and if the fluid has not increased Dr. Miller will release us to go home and we will continue our regular weekly follow up, labs and echos at Phoenix Childrens!

Meanwhile we said goodbye to two more families on Sunday who were fortunate enough to go home.  Coleson's BMT day "brother", Caleb was released on his 100th day. They were transplanted on the same day though Caleb has Fanconi Anemia.

 Also a sweet young boy, Eleafar, who has epidermolysis bullosa (otherwise known as Butterfly Kids) was also able to go home as well.  Caleb's family is one we are very close to and Peyton was best buds with Eleafar's brother, Gabo and both families will truly be missed.  I particularly am inspired by Eleafar's mother, Margarita, who has had to take tremendous care of him since he was born (I won't go into the graphic details) and also has 3 other kids. If there was one woman in the world Paul and I could help, it would be her.  She has sacrificed so much of her own life for her boy.  I tell you, if everyone could spend a day at a children's hospital or a Ronald McDonald house visiting and talking with families of seriously sick kids, there would be much more compassion and acceptance in the world...

We had a fun Halloween; Peyton was a kitty cat and Coleson, fittingly, a monkey.  The Cyclosporine makes him "furry" and it is literally everywhere.  He will be on it until his 6 month checkup in January and I can't imagine we will even be able to see skin by then.

Meanwhile we are starting to pack up in anticipation of getting released and trying to keep enough Cheetos and ketchup stocked to keep up with Coleson's appetite. Since he is back on steroids, he is eating morning to night, unfortunately his food of choice is Cheetos and Ketchup.  His hands are literally stained orange.  

Tuesday, October 22, 2013

T+90 Daddy is not allowed to leave any more!

Just like clockwork, Paul is leaving for a business trip and Coleson goes into emergency surgery.  Let me first say that Coleson is such a tough dude.  We are always surprised when we walk into clinic and they hit us with some bad news since most of the time you wouldn't know it from the way he acts.  He had recovered from his last drop in Oxygen sats well, but started to have a dry cough on Saturday.  Back up 2 days earlier and he sounded great in clinic and his sats were still high 90s.  Fortunately we have a very thorough Dr. and he was not merely satisfied with the fact that he sounded good, he wanted to get to the root cause of all his coughing even though at that time it had disappeared.  So Thursday he ordered a more detailed CT scan... which Coleson handled like a pro.  Typically little ones don't stay still in the machine, but he did so good.  I hadn't heard anything by the weekend so was feeling pretty good that nothing remarkable showed up and Peyton and I enjoyed a nice weekend with our old neighbors and her first best friend, Sammy and Bree.  It was a quick visit but we did have time to see Disney's Live Pirates and Princess, courtesy of the RMH on Sunday morning.
So we walked into clinic on Monday at 8:30 and the Dr. told us that the CT scan revealed some fluid around his heart (periocardial effusion) and he ordered an echo for 10:00.  Plus late Friday he had gotten results from his lab work that he tested positive for Adno virus (though not a high cell count of it) and we were scheduled to see a pulmonologist at 10:40.  Well, we never made it to pulmonology because the echo revealed enough fluid around the heart to schedule immediate surgery (Periocardialcentesis) As a side note, I am going to have to re-write the ABC's of MPS as we've added several new words over the past 90 days.
So we got readmitted to the BMT ward, in the same room as our last stay, and prepared for surgery. In the meantime we met with all kinds of Dr.s & Anesthetists to review the procedures, risks, etc.  The cardiac surgeon even said, that he wouldn't know by the way Coleson was jumping and laughing that his heart function was being compromised.  So Coleson went into surgery and Paul left for the airport and waited for me to confirm that everything was OK,  about an hour later I was able to do.  They got 6 ounces of fluid from around his heart and put a drain in there so any additional fluid would be able to drain out.  We've gotten another 6 ounces in the past 24 hrs.  Just to give you a comparison, it takes 9 hrs of his G-Tube feeds to equal 12 ounces.  Needless to say that's a lot of fluid around his little heart!  He's been sleeping pretty soundly for the past few hours so not sure if anymore has built up.  Usually a lot drains when we move him which we try not to do since he's in quite a bit of pain.
We are in wait and see mode now.  We are waiting for the fluid to stop draining, waiting for the adno cultures to come back to determine next steps.  It could be as simple as do nothing if adno comes back negative, or if it comes back positive, to take him off his immuno-suppressent meds early (which is what is used to prevent Graft vs. Host disease) and hope his own immune system can fight off the infection, or put him on an IV anti-viral medication which unfortunately can damage the kidneys, sometimes to the point of requiring dialysis.  I don't like the sound of either option so am hoping the adno virus cultures come back negative and the earlier labs had gotten contaminated.
Meanwhile, my baby boy needs me and I am trying to just focus on being mommy right now and just holding him so he can be as comfortable as possible.  I have been trying to do too much and yesterday scared me back to the reality of this awful disease and the risks associated with it.  He needs me right now more than ever as do I him.  Please keep him in your hopes and prayers.  He needs to feel the love and support from his worldwide family.

Tuesday, October 15, 2013

T+83 My Turn, My Turn

Where do I begin???  A lot can happen around here in 11 days!  First, last Monday, Coleson reminded us why we are all here... His Oxygen level was at 82% when we were in clinic.  After much hesitation, the dr. agreed to not admit him as long as his oxygen levels responded to an Albuterol neb treatment...which it did, although only temporary since Albuterol is only a fast acting, short lived drug.  So after a long day at clinic, we were sent home with 4x daily Albuterol nebs, steroids and azythromycin, yet another antibiotic.  We had to check in daily for oxygen level sats.  On Tuesday, his oxygen was in the mid-80s, by Wednesday low 90s and by Friday mid-90s.  Yesterday it was 98% and his lungs never sounded better,which you would think I would be ecstatic about, and I was, briefly.  However, since he did respond to that treatment, the Dr. Informed me that he is still very cautious right now.  The positive response could be for 1 of 3 reasons: 1. It could be because it actually took care of a lingering virus or bacteria, 2. It is only temporarily "masking" a bacteria since azythromycin can do that or 3. That he could have a localized GVHD (graft vs. Host disease) to the lungs.  It just happens that steroids and azythromycin is the treatment for GVHD of the lungs, with the exception that it is in higher doses and for 6-9 months!    Needless to say, I can't imagine giving him steroids for that long!  So we are on close watch right now and have to take him back on Thursday to check his sats and see how his lungs sound.

Otherwise I had a great week with visits from Brendon and Sandy and we finally got to eat at "The Nook" a famous burger dive.  They all said the burgers were the best!  I scored big time at Bingo ( which I never do) and the best part of my week was when I opened my door on Friday evening to see my AZ friends Kim, Suzette and Stefanie!   They totally surprised me and stole me away for the weekend.  Thank you Brian, Chris and Richard for taking their kids for the weekend and Paul and Rachel for taking mine, so I could shed my mursing and mommy duties and just be a "girl".  I actually enjoyed shopping again.  Also thanks to Laurel who kept up the rouse.  I did suspect something was up, but did not expect to see those 3 at my door.  We went to the Diercks Bentley concert, toured the sculpture garden, shopped at Mall of America and shared some great laughs and some tears too!  

Out return date is still a bit tentative with this new possibility of GVHD but are still hoping to go home on November 1st.  

Sunday, October 6, 2013

T+72 Happy 2nd Birthday (and 72 day re-birthday) Coleson!

Happy Birthday my beautiful baby boy!  You have been through more in your 2 years of life than most in their lifetime.  You have amazing spirit and determination.  I promise to be by your side every day of your life as long you promise to be by mine the rest of my life!

Coleson had the best birthday he could have had.  Not necessarily from a health perspective but from a social perspective.  The Honeywell Minneapolis Law and Contracts team (led by Janna) hosted the RMH dinner Friday night and put on a little birthday party for Coleson complete with an awesome birthday cake and presents for both kids!

I am grateful to at least be in a city with lots of friends near by!  Thanks Laura, Barry, Tim, Jodi, Rebecca, Janna, Debra, Sue and Michelle!  Fittingly, the kids got his and her airplanes along with books and a phone.  

The last week was pretty full.  Just as I feared,  Coleson's congestion and cough returned within days of ending steroids.  He stopped eating so we are back to g-tube feeds and vomiting...  

Sunday we met my friend Nicole and her family at the White Bear Lake Apple Orchard.  We picked pumpkins, went thru a corn maze and on a hay ride thru the orchard,minus the hay.  

Sunday night Telma and Sam stopped by for a quick visit and to drop off some pictures that the kids made for Peyton and Coleson.

Monday I threw out my lower back.   By Tuesday morning it was worse so I went to the Drs.  I swear Paul, Peyton and I have been to the drs. more in the past 4 months than ever..we'll maybe not me.  The dr. Put me on muscle relaxers and it is slowly getting better.  On a side note, after a small adjustment to my pacemaker, it appears that is working just fine.  There was a setting that was limiting my sinus node to beat fast enough to support my running.  

Another Hurler family is here for a couple weeks while their son (6yrs.) is getting knee replacement surgery (I told you this doesn't end with the BMT!).  They have 2 kids with Hurlers, their youngest daughter is 18 months old and is 1 year post transplant.  Since they knew within 2 weeks of birth that she had Hurlers they were able to start her on enzyme right away and she had her BMT at 5months.  boy does it make a big difference!  Not to lessen the hardships she will have in life but hopefully it will prevent her from having as many side effects and surgeries.  Only time will tell.  It seems odd to me that someone who is 6 months younger than Coleson is already celebrating 1 year post BMT.  They are a really nice family and I again appreciate being able to talk with another family..it is so helpful.  Thanks RMH for creating a place where that can happen.

We are within 30 days of going home as long as nothing prevents that from happening.  We are still trying to figure out the logistics.  Coleson hates wearing his mask, though we are trying to use it more and more, so a plane ride seems almost impossible but driving home is too risky for him.  Paul is looking into Angel flights but Peyton would not be able to fly with us.  We'll figure it out cuz winter is coming to Minnesota and I do not want to be here when it hits!  It is a beautiful (but chilly) fall!  

Tuesday, September 24, 2013

T+60 Starting to Count Down

Well we finally are past the half way mark and we are now starting to count down the days until we leave.  As Peyton would say, 40 is less than 50, and 50 is less than 60, and 60 is less than 100!  With the help of the steroids, Coleson's sats are back up into the high 90s.  Though already just 1 day off he is starting to get congested again.  While on steroids he improved every day and was eating like a little linebacker!  We were totally off his G-tube feeds for a few days, however his appetite has slowed down today already so we will probably hook him back up.  As far as the BMT goes, he is doing remarkably well.  He has not had to have any transfusions and is staying in normal ranges.  He is starting to grow the furry hair all over his body...Not even sure he will need the monkey costume I got him for Halloween!  He has been a spitfire on the steroids and talking up a storm.

Peyton has the flu which makes life in this 1 bedroom living area a bit challenging.  I am doing laundry non-stop and spraying Lysol everywhere. Even on Rachel and myself when necessary!  Paul had to go back to Phoenix this week so he is fortunately missing all the fun!  Although he is having his own fun fixing everything that has broken over the course of the last 3 months.  Dead batteries in the car and tractor, broken well, leaking landscape water pipe...   

Peyton continues to crack everyone up around here.  We have had a pretty exciting week. First Rachel's friends Brian and Jenna came for a visit then Grandma and her 3 sisters came and then my friend Christina and her daughter came.  She went to the Mall of America to ride rides 3 days in a row!  She got a bit worried when we put her carseat in Grandmas car.  I had to reassure her that she was not going to grandma's house!  The Timberwolves held a press conference At the RMH announcing ths signing of Ronny Turiaf and we have video of He and Peyton playing ball.  She is enjoying going to gymnastics again though I am afraid we'll have to miss tonight due to her flu.  My co-worker, Dina, has her son In the same class.  We also took Peyton to her first college football game.  The colors were maroon and gold but it wasn't ASU...I can't believe her first game was the golden gophers!  She has said a couple amazing things lately.  First she was telling someone that her brother's curls were all gone.  I thought she meant his hair, though it wasn't curly.  A couple days later she was talking in the car and i realized she was saying "curlers" and what she meant was "hurlers".  It's the first time I've heard her refer to Coleson's "owies" by name.  It's hard for her to understand that he's been in the hospital for so long and isn't all better...for me too.  She also was talking about getting a haircut-yes yet another, her 3rd since the end of July.  She said she wanted to get her hair cut short so Coleson's could come back.  I wish it was that simple.  She is a good big sister!

I have been very busy as always trying to maintain my job, Coleson's schedule, Special time with Peyton and my sanity! Paul and I did get a date night when grandma and aunts were in town.  Though Paul was a bit sick so it wasn't great timing.  I am starting to go stir crazy in this little place and started packing on Sunday.  It's amazing what you accumulate here! And we have been blessed with lots of care packages, cards, stars, etc. along the way.  Good thing we are flying home and Paul is driving home as we will need the extra room in the Xterra for everything.  We hope to be home the first week of November!  Get those flu shots so we can hang out!

Friday, September 13, 2013

T+50 part II Never would have thought...

My mother earned her angel wings 33 years ago after a 3 year battle with cancer.  I never would have thought that on this same day 33 years later, I would be sitting in a hospital room, discussing with doctors and specialists what to do for my son in order to raise his oxygen levels.  Nor would I have thought that any other disease would be even more devastating to me than cancer.   I never would have thought that I would rather be at MRR with the rest of my colleagues as opposed to being here.  
Paul and I were interviewed tonight by the RMH for their yearly promotional video about our journey and staying at the RMH house... I couldn't do it without getting choked up..nor could he!  I did however hold it together to say that fellow Honeywellers were  going to be providing dinner for the RMH on Coleson's birthday, October 4th.  Thanks Janna for organizing.  Please keep RMH in mind when you are considering charitable donations. As I described it, the RMH is "priceless".

Thursday, September 12, 2013

T+50 Still not holding Oxygen

Well, We were back in clinic today and Coleson's Oxygen level is in the 80s...and that's even when he is awake.  They were contemplating whether to re-admit him, just so they can keep a closer eye on him, give him blow by oxygen as needed, etc. They called in a pulmonary specialist to assess him.  He suggested to put him back on steroids for 10 days and Cypro -  some pretty hardcore antibiotics.  I have to stop his g-tube feeds for 3 hrs.  at each dose as it interferes.   They hope by Sunday, he will turn the corner.  If he worsens, they are going to go down his bronchial and clean out his lungs.  I am hoping they won't have to do this as it sounds pretty serious and of course another sedation that in itself is so risky.  Please send us your thoughts, prayers, love or whatever you got!

Monday, September 9, 2013

T+47 Home at last

Well it was a long 12 days but we are finally back home!  On a good note, It did give me a chance to catch up some chic flics!  Peyton and Grandma arrived last Sunday and brought some much needed smiles.  Coleson just lights up when she's around.  Over the past week we were just waiting for Coleson to turn the corner.  He continued to get aerosol treatments and suction isn't ever 4 hrs. Round the clock.  We thought we'd be going home by Friday but he just wasn't holding his oxygen overnight (dropping into the low 80s) relying on blow by air.  They needed to ensure he could hold his own before releasing him.  Finally last night he did.  He dropped this morning but was able to bring it back up on his own.  So now we have 3xs daily nebulizer treatments added to our repertoire!  However we did come off TPN last week so that is a good trade.  His G-Tube rate is 35mls/hr x24 hrs.  He has also eaten a few things over the past few days like French fries, apple slices and juice.  
I think Coleson knows he has to wear his mask now as he didn't fight it all all today or yesterday when we went down for X-rays.  

Peyton and I had some much needed mommy/daughter time this past weekend.  We went to my friend Nicole's cabin in Wisconsin on Saturday and went to a Hopekids carnival at U of Minn on Sunday.  All the gopher athletes worked the event.  Peyton bounced on all different bounce houses, rode ponies, raced cars and met "Goldy the Gopher".  She is glad to be back at Old McDonalds! We started Gymnastics tonight.  Something "Normal" for a change.  

We are over half way done with our stay (hopefully).  We are looking forward to some visitors over the next few weeks.  Rachel's friends are coming next week, grandma and her sisters are coming as well.  Also one of me best friends, Christina, and her daughter are coming late next week.  We also will be saying goodbye to our next door neighbors and their Hurler daughter.  We will be the only Hurler family at the RMH house.

It is the start of flu season so we have to be even more careful.  Anyone who plans on seeing Coleson on thene t year has to get a flu shot.  It's doctors orders.   Another Hurler family who was here in the spring unfortunately did not get to bring their daughter home with them as she caught the flu and could not fight it.   My "Murse" duties call..he's gotten sick 5 times since being home already!

Sunday, September 1, 2013

T+39 Slowly getting better

Well we are still in the hospital although day by day he is getting better. He is getting an albuterol/pulmicort/ativant (Steroids) nebulizer cocktail 4 times a day since Friday. It seems to be opening up the lungs. He also gets deep suctioned after every treatment down the nose and into the back of the throat. I'm amazed at all the sticky goop he regenerates every 4 hrs. As you can imagine neither one of these treatments he enjoys... (who would?!) so we have to hold him down. They tried putting a warm mist high flow nasal cannula on last night but he really wanted nothing to do with it so it came back off. His sats are back up on room air thought we still have the blow by on and near him in case it drops (which is does periodically, especially at night). None of the cultures came b...ack positive for various viruses so they think it is just the common cold, which just proves how fragile BMT kiddos are. A common cold could be life threatening. The fight against the cold led to his lungs getting weak and even more compromised and the capillaries started to close like an asthmatic type of response.
On the positive side, since his vomiting has decreased (only once yesterday morning) I have been upping his g-Tube feeds and I hope we will be able to go home without TPN. Although I still think they rate is way to high. He is gaining weight and getting a bit bloated. I'm hoping the dietician realizes that he never ate this much pre-BMT muck less will eat that much post.
And Peyton comes back today. We could all use a little sunshine in our lives right about now. Coleson especially.

Thursday, August 29, 2013

T+36 New Room - Different View

Coleson was re-admitted to the hospital yesterday as the Doctors were concerned about his Oxygen Saturation level and that he still hasn't fought off this cold. They took X-Rays on Monday and the left lung was clear but the right lung was cloudy, indicating infection. They sent us home on a new antibiotic (Levaquin) with which I had to stop his G-Tube feeds for 2 hrs twice a day so the antibiotic wouldn't bind with the contents. I actually thought he and acted better than he has in the past week yesterday. And he hadn't vomited the past 2 nights and not at all during the day yesterday. However, I also thought it would be a welcome break from "Murse" responsibilities as well and some flow by Oxygen might give his lungs a much needed boost. So we settled into our room - seems a bit bare from his original room.. No big banner on the wall, no pictures on the door, no stars decorating his walls. However, I don't intend to stay long enough to make it homey. This room is on the west side of the ward so I get to overlook downtown Minneapolis. I have a good view of the metrodome where the Vikings are playing their first game tonight. The nurse suctioned out his nose and he sats looked good the rest of the day. He had to have more cultures done and a CT scan done. The CT scan showed basically the same thing as the X-Ray on Monday, which is an infection in the right middle lung (bacterial Pneumonia). They have him on a stronger antibiotic now that can only be given in the hospital so not sure how long we will have to stay. I was hoping it would only be a night but his Ox. Sats were awful last night. The nurse had to come in several times to readjust the flow by cup. He was dropping below 92%... he needs to be registering 97% - 100% to release him. They also are starting albuterol treatments and another antibiotic (the docs just rounded so made this change). So I have a feeling we will be here a couple more nights. I just hope we get home by Sunday when Peyton and Grandma return.

Thanks for letting me have my pity party and for all the words of encouragement.  I am doing much better today as I have to be for Coleson's sake.  It also helped to Skype with Peyton a couple times this week.  She gets a little sad when we Skype as she wants to be with us so we didn't see/talk to her the first week she was gone.

Today is also our 5 year wedding anniversary. I never thought I would spend it in the hospital. Paul has been a rock throughout this process, I don't know how he does it. He has a much more positive attitude than I do. It took me a while to find the right one but going through times like this really makes me appreciate him all the more. He is actually flying back form Arizona today, hopefully he can make it back at through all the traffic that is expected in downtown Minneapolis as the Twins, the Vikings and Gophers all have home games and the State Fair is going on just 5 miles away.

Tuesday, August 27, 2013

T+29 - T+33 Time for a pity party!

Again it's taken me a while to post.   It's hard to keep writing about the ups and downs of this process.  This past week has been a lot of "downs". Coleson can't get rid of his upper respitory infection leading to constant nasal congestion, coughing and vomiting.  He has been put on more meds and we are doing several hot shower "sauna" treatments along with a lot of nasal spray.  He was put on Levaquin yesterday which has it's own side affects and we have to stop g-tube feeds 1 hr. prior and after giving it to him, twice a day.  In addition, his CSA level has dropped which is what fights off GVHD (graft vs. host disease) where the donor cells attack Coleson's immune system, and is horrible to treat and sometimes can't be....
On top of his health, many of our friends have left the RMH to go home.  This is good for them, but sad for us as we are confined to this place pretty much and we rely on the companionship of others to get us through.  With Peyton still in Michigan it made for a quite and lonely weekend.  Paul, Coleson and I took a drive around the surrounding river front neighborhood on Saturday.  I imagined myself living in any one of the Tudor style homes, drinking tea, not having a care in the world.  Then Coleson got sick and it brought me back to reality.  And reality bites!  (Isn't that the name of a movie?  I do my best to stay strong and all your texts, emails, calls, cards, etc. help.  But there are days that I feel sorry for myself and for Paul and for Peyton and most of all for Coleson.  Sunday was one of those days and was the first time I let done my guard to cry since we've been here.  It helps momentarily but not in the long run.  I question and doubt if there is a higher being.  If there is, i wonder why kids and families have to deal with crap like this.  I ask "why me" and "haven't I sacrificed enough."  My mom got cancer before I was 1 and was gone by the time I was 4.  The 3 years in between I barely saw her as she spent most of her days in the hospital.  By age six, my father started dating my step-mom who had a daughter (my step-sister) who has muscular dystrophy and I had a lot of resentment due to how that impacted my life.  (I got over this by the time I left for college).  Then when I was 33 I was diagnosed with complete heart block and now rely on a pacemaker to keep me alive.  And now this.  I feel a little picked on by the big guy.  I know others have had it worse off then my but there are also a lot of people who have not had to deal with shit I've dealt with too!  One of my best friends who also is a special mommy had someone tell her that she will have a nice place in heaven.  It's comforting to think this but at the same time I say screw the afterlife, what about my present life!  I just don't enjoy normal activities like shopping and my time on facebook is mostly spent reading up on other Hurler and BMT families.  And so I found a nice bench to sit on and had myself a pity party.  The party didn't last long as there is not a lot of "free time" in my days and I have to be super mom again.  
Paul left on Monday to go back to AZ for some meetings and I am actually a little jealous.  Not that he has any time to enjoy it, but at least he gets to escape all of the fun here.  It's just been Rachel, Coleson and I.  Now I used to think everything happened for a reason (yet to figure the reason behind Coleson's disease.). But there was a reason why Rachel came to nanny for us when Coleson was born.  She loves my kids and they love her and not many people would disrupt their own life for 4  months and live in the same RMH room without all of us going crazy! she has been a big help and has gotten puked on just as much as I have.  
I hope Coleson's congestion and cough gets better by the time Peyton gets here on Sunday.  He brightens up when we Skype with her and so do I.  It will be good to have her back with us again.    And I hope my pity party ends.   I usually take things in stride but this is a pretty big stride, even for me.  Your support is what agents me through this.

Wednesday, August 21, 2013

T+23 - T+28 "Murse"

Though it's not a title I envisioned ever having, Murse (mom/nurse) is a title I proudly bear.  The time between my previous post and now is indicative of how busy life is being out-patient.  Let me just run through a "typical" (our days are anything but) day.  Warning, the below is not for the weak of stomachs.

Wake up before Coleson, give him first med (anti-nausea).  This entails stopping his G-tube feeding and then restarting it.
Hope he doesn't get sick, draw other meds (started with 13, now down to 8).  
Wait 30 mins.  Start to give more meds - the order changes on the day.  Start/stop G-tube.
Hope he doesn't get sick.  He wakes up.  He gets sick.
Examine vomit to Determine what meds he has thrown up and cause for vomit.
Decide whether any of the meds need to be re-given (possibly call BMT fellow for guidance)
Give more meds.  Hope he doesn't vomit.
Change diaper - analyze contents to determine how "loose" it is.
Unhook TPN feeding.  Flush and Hep lock his line.
Give remaining meds.  
Wash bedding
Go to clinic for blood draws, analysis for med/feeding changes/transfusions (fortunately only enzyme thus far - no blood or platelets needed yet).  Only needing to go twice last week and twice this week so far.
Repeat morning med routine in afternoon.  Inclusive of analyzing "output". Make decisions.o
Get TPN out of fridge to warm up.
Change out G-tube feeds.  Determine what rate to administer it.  He is at 20mls/hr during day and 10 Mls/ hr at night.  Needs to average 20 Mls/hr continuously to stop TPN which I really want to stop.
Repeat morning med routine in the evening.  Analyze output.  Make decisions.
Mix up his TPN.  This needs to be done in sterile environment and includes injecting vitamins into his prepared electrolyte bag and mixing in his lipids.  
Hook him up to TPN.  Take temp prior and 1 hr after.
Sleep a couple hours.  Determine why Coleson is restless. Do a number of things to prevent vomiting: Stop his G-tube feeds, vent his g-tube, drink water, Wait.  re-start G-tube, perhaps Slow down G-tube rate.  Wait.  Repeat stopping/venting/waiting sequence.  
Coughing starts and then vomits.    Clean us up, go back to sleep for a couple hours, repeat previous sequence.  Sleep a little longer and then repeat the day.

Thankfully, Rachel is here to help me with giving meds, taking care of him during days/evenings so I can sprinkle in work time and of course Paul is too.  He helps at night when he vomits.  Coleson developed the coughing/congestion that I have from the RMH and that is primarily the source of vomiting.  The drainage just runs down his throat to his stomach. 

And fortunately, my sisters took Peyton back to Michigan with them after their visit here this weekend.  It was a last minute decision and I hated to see her leave again, but it was the best decision for everyone.  She will have more fun with her cousins and we all need to focus on Taking care of Coleson right now.  I just hate that we are in this position where it his is the case.

Otherwise Coleson's numbers are great at last check and he is his playful, happy self most of the time.  We also got the engraftment results and he is 100% donor cells for the newest produced cells and 90% for the longer living cells - which mean 10% are still his but those will hopefully die off soon enough and be replaced with donor cells.  


Thursday, August 15, 2013

T+22 Farewell Room 4138!

Farewell Room 4138
You really did treat me great
32 days and nights
I gave it my best fight
I really can no longer stay
It's time for me to run and play
With Peyton, my big sis
It is her I truly miss
Thanks to all the nurses & assts., you all were great
For taking good care of me, I really do appreciate
All the diapers, meds, blood and tears
And for putting buttpaste on my rear
And to the PAs, Fellows and Docs
Let me simply say, you all Rock!
Dr.s Orchard, Lund and Miller
This BMT is really killer
Because of you, I am a new man
I promise to do the best I can
To get back in action fast
And to make this new marrow last
Don't forget my personality
Or my love for Umi Zoomi
Don't be sad to see my go
Just remember my warm greeting, "No, no, no"
Room 4138 it's time for me to say goodbye
It's bittersweet, I won't lie
It will be a little scary to go
But it's time to go make these cells grow!
Thank you University of Minnesota - Amplatz Children's staff!

Nurses:  Deb, Linda, Anna, Em, Katie C., Rachel, Tracey, Erin, Ashley, Gretchen (who gave me my donor marrow at 1:42am) to name just a few.  I didn't create a special Care team as you all were great.
Nursing Assts; Sarah, Danielle, Paige, Sartu and others for the baths, dressing changes and everything else you did to make my stay comfortable and safe.  Though you treated me well, I hope I don't see you again.
Chaplain LaDonna for blessing me.
PAs/Fellows/Pharmacists, Dieticians, Social Workers and the others that rounded every day; Sarah, Hillary, Luis, Marie, Maggie I am sure I'll be seeing some of you at the Journey Clinic over the next 78 days.

And of course to the amazing BMT Drs. that specialize in my rare condition, Hurlers; Dr.s Paul Orchard, Troy Lund and Wes Miller.