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, May 22, 2015

Graduations and Celebrations

Not sure any actually made it into his mouth!
Well we pulled off the big surprise by showing up unexpectedly to schools and homes last weekend.  My Grandma looked great for any age, much less 100.  It was a short weekend but packed full of fun, so much so that Peyton with that huge heart of hers, did not want to leave her cousins!  The first time that she was in tears leaving.   It was fortunate (and just coincidental) that my niece Katie was "too sick" to go to school on Friday and when she showed up at Grandma's house in the morning to find us eating breakfast her jaw hit the floor.  She wasn't too sick to spend the day playing with Peyton and Coleson though and so we went to Mooville for some ice cream.  Then we showed up at the High School to surprise my oldest sister and my other niece.  Jaw dropping must run in the family because they both had the same reaction.  Then we headed over my nephew's school to surprise my other sister and the boys.  They didn't necessarily have the same reaction (they are boys and play it a bit cooler) but none the less were happy to see Peyton and Coleson.  All my nieces and nephews are so good with my kids.   They spent the evening schooling Paul at basketball and playing on their scooters.  We also surprised my grandma at her place on Friday as Saturday we predicted would be a bit overwhelming. 
Looking Great at 100!
Saturday was spent playing on the farm and Aunt Lorin's house until Party time.  Lots of people showed up Hope Landing to celebrate both 100 birthdays.  I don't think age is a topic they talk about much at Hope Landing so there were quite a few residents who were equally surprised by the special day.  Saturday night was another basketball schooling and family fun.  Sunday was short as we had to leave for the airport at 11:00. 

Grandma Great and her Greats!

And the with the Grands!

Cool in Daddy's Shades!
Did someone say Cake?!

Coleson's last day of his first year of Pre-school was this week.  Since there are kids moving on to Kindergarten next year they had a graduation and all the kids regardless of age/grade got to attend.  I didn't use to be such a softy but I had tears in my eyes as they played the traditional graduation song and he accepted his diploma!  Which he immediately tore.  Peyton's last day of pre-school was last Thursday.  They didn't have graduation but I too felt sad that she was leaving such a great school, Day Spring, and will be heading off to Kindergarten in the public school system next year.  When we went to enroll her last week, she said she was very nervous about going to her new school.  If I have to be honest, so am I!  Looking forward to the 3 day weekend. 

Coleson's story was featured on the ABC 15 website this past week to promote Be The Match Donor Registry.  http://www.abc15.com/news/be-the-match/blood-transplant-was-phoenix-3-year-olds-only-hope .  I also attended a lecture from a Neuropsychologist sponsored by Genzyme, the company that distributes the Drug (Aldurazyme) that Coleson is infused with weekly.  I got to meet another MPS I mother that I have only emailed with until now.  Her son has the adolescent onset form of the disease and an adult women who has the adult onset form of the disease.  It was good to connect with others in the valley (there are so few of us) that are living with disease.    Well, that was our week!  Hope you all enjoy or enjoyed your holiday weekend.

Wednesday, May 6, 2015

Birthdays, Donor and MPS Awareness Day

Birthdays - Some big ones coming up.  First would have been my Dad's 75th on May 8th.  The year of "firsts" is always hard and this will be no exception.    I made this for Dad when I was in 5th grade.  There were typically school projects for "Mother's Day" and it was convenient that my Dad's Birthday was always the same weekend so I could modify the projects for my Dad's Birthday. (My dad and Aggie didn't marry until I was in 7th grade).  It's hard to read but it say's,
 I Love You Because...

Family Leader
A nice guy
Tough and Always Working
Hoping we will be right
Eager to get the job done
Really interested in what we do

I might not have been a poet at 10 years old but it was pretty accurate.  Still don't believe that he is not here with us to celebrate this milestone birthday....
Speaking of which, my Grandma is turning 100 on May 19th.  We are flying home to surprise her.  It's about the only thing a 100 year old would want on her birthday.  Aggie and my Dad threw her a big party last year just in case she didn't make it to 100.  We never expected it was because my dad wouldn't make it.  My Grandpa's Birthday is on May 9th, though he has been gone for 21 years now.  I think Grandma is really looking forward to the day that they can celebrate their May birthday's together again. And to be honest I hope they are together for it next year.  Not because I don't want my Grandmother here but when you have lost everyone in your immediate family, and you're 100, the days must tick by so slowly. 

On April 1st, almost exactly 2 years after we received Coleson's Diagnosis (April 2nd, 2013), I received his marrow Donor's contact information.  It was the day I had been waiting for since July 24th, 2013.  I was finally able to thank the man who gave my son a new opportunity at life.  His name is Jacob and he's from Wisconsin.  Coincidentally, Coleson's middle name is J.  Just "J."  Originally it was for John (my Dad) and Joyce (Paul's mom) but I can't help but think there was another reason for naming him just "J."  He seems to be a good guy (being a donor take's a special person) with a lovely family full of boys(3). He responded back to me that he felt a special connection as one of his own is Coleson's age.  I hope to thank him in person some day.   

International MPS Awareness Day is on May 15.  Wear purple to spread awareness and help make a difference in the life of a child with MPS or related disease! If anyone is interested in Donating to the National MPS Society, to help find a cure for my son and others with this illness, here is the link:  http://mpssociety.org/

We are making our annual summer trip plans including our week long tour of the Twin Cities Children's Hospitals.  I think we have to go to 4 different ones to see all of his specialists. He may have his heart surgery while we are there and hopefully we will hear that he will not require any other surgeries in the short term. We are also excited to help host the 2nd annual RMH dinner with the help of my Minneapolis based coworkers! On July 24th again as luck would have it!

We held a Kentucky Derby/Fight Night celebration at the Ranch over the weekend.  My dad's truck proved to be one of the more entertaining "toys" to play on.  I think my Dad would be happy that it is bringing so much joy to my husband and my kids! (Which in turn, makes me happy).

 Another bit of bright news in April was that I received a promotion at work.  My new title is Director of Contracts Technical Solutions!  I am so thankful to work for such a great company and a great function and a great team.  I need to finish building out my staff but then hope that to make some significant and exciting achievements.   

Tuesday, March 24, 2015

No News is Good News

Many of you have called to check up on Coleson (and the rest of us J) recently so I am making time to post.  The saying goes, “No news is Good news” and for now, I would say that is pretty accurate. 


We have enjoyed the last few months, being somewhat “normal” enjoying the Arizona winter outdoors and in the pool.  Last weekend we spent most of the weekend in the pool and Coleson, who is fearless around water just like his big sister, is making great progress.  He can swim under water the width of the pool, he can get his head above water briefly and knows to turn and swim to the stairs when he jumps in and yes, he does jump in!    


We are staying healthy for the most part despite the measles outbreak and the flu vaccine not totally hitting the mark.  Both Coleson and Peyton had some bad intestinal issues a couple weeks back and I thought not only did Coleson have a  C.Dif flare up but that Peyton got it too, but his labs came back negative so I think we determined it was due to lemons.  AZ Citrus has had some “bugs” this year and I think we were impacted by it.   I also had quite a scare after Coleson got his second round of DTAP and Prevnar vaccines.  That night he couldn’t walk on one of his legs and really had me concerned. Wouldn’t you know that Paul happened to be on business travel that night.  Thankfully a good friend and neighbor, Teresa a Physical Therapist, was home and she evaluated him.  Without knowing he had had a vaccine, she confirmed it was his right leg that he was favoring and not his back or hip (which I was fearful of).  We gave him some Tylenol and by the next morning he was fine.  He has never had a bad reaction to a vaccine before but he was pretty tense by the second shot which was in his right leg.  I know there is a lot of controversy around vaccines and with both kids I was slow to immunize.  Neither had a negative reaction until now. Unfortunately, Coleson has to get them all over again since his BMT.  We have been to allergists, ENTs, Endocrinology, dentists and others over the past few months.  Contemplating putting tubes in his ears again, since both have fallen out now, watching his thyroid level and determining when to get his PDA (his hole in his heart) fixed.  I’m waiting for University of Minnesota to schedule all of his appts to determine if he will need to be sedated there and if so, probably just wait to do the PDA there in July. 


Coleson is also starting to potty train.  I’ve decided to do the “3 day Challenge” with him but I never have 3 days to devote to doing it.  Last weekend we gave it a strong effort (in between pool time that is) and he seems to have made progress even going on the potty at school twice.  We didn’t have much opportunity this past weekend so we are targeting Easter weekend to give it another solid try. 


I’ve done some travel.  First to Puerto Rico in January to see my team that lives there.  It has been 4 years since I’ve been there and it was very good to do some team building with all my team members (9 in Puerto Rico). I also got to see Pat and Theresa (neighbors from above story) who were there for winter baseball (Pat is a baseball player).   Also, Paul and I took a surprise vacation to Cabo with my sister and brother-in-law in February.  I’m not sure I was ready to “plan” a trip so far away from the kids but this literally just fell into place last minute after Lorin got a call a week before saying they had overbooked her hotel and they were moving her to another hotel.  At first she was skeptical but after talking to some family friends found out it was a 3 bedroom Villa at a 5 start resort.  She called us  and before we knew it, we had nanny coverage for the weekend and our tickets booked.  It was a nice long weekend and this resort was within the same family of resorts we stayed at when I was 6 months pregnant with Peyton (and loved by the way).   Had I had months to think about the trip, I would have found excuses not to go but literally it was too good a deal to pass up. 


Grandma has also visited twice.  The first time she drove my dad’s, “Big Red Truck” down here with a friend to give to Paul.  It was the one thing we asked my dad for prior to him passing and he gladly gave us.  Paul’s truck (F250 King Ranch) was stolen from the Honeywell parking lot 6 years ago (again when I was pregnant with Peyton) and the Honda Accord he got in replacement has not had the same feel.  I know my Dad always wanted Paul to have a truck again and to know his truck is at “The Ranch” I think made my dad happy… and it makes Paul very happy too.  He loves to drive the truck and the kids love to ride in the, “Big Red Truck” too.


Her latest trip was just last week, the normal time she and Dad would come to AZ.  This time a bit more emotional as Dad was traveling with her via vials.   One to be spread at the Ranch and one to be spread in Sedona.  It’s ironic that my dad was not a traveling man, that is not until later in life when Aggie finally got him to go on adventures with her, that he wanted a little bit of him to be spread at his favorite places including The Ranch, Sedona and Tibey Island.  We just felt a bit rushed to try to do this during this visit though and decided to wait until her next visit over Christmas.  So for now, Dad is now watching over us for a while here.


Peyton is doing well, still enjoying gymnastics, swimming, horseback riding and school.  We have now added dance to this mix as well.  Freestyle – which is more suited for her personality.  She is 5 ¼ now as she will tell you and looking forward to going to Kindergarten at Waggoner next year.  She is such a good big sister which Aggie and I got to witness when Coleson went with her to Dance class.  She made sure that Coleson was included in every way.  I think she was more focused on Coleson than herself.  She is so proud of him and I of her.  She often likes to sleep in his room with him (that is when he actually sleeps there himself).  After potty training, these will be the next 2 things we tackle with him. 


Paul did well at the Arabian horse show this year, getting 3rd place in the Novice division overall.  We’ve also been able to spend time with some friends this year (date nights even) as we don’t have to be as protective of Coleson’s health like we were last year.  I’m still experiencing some funny sensations in my heart.. I don’t know if there has ever been a time I have been fully confident that my pacemaker is working as well as I’d like it to.  A close family friend recommended a cardiologist and after a stress test, he thought perhaps my sinus node is starting to give out.  There are 2 “nodes” in the heart and currently my pacemaker is only acting on behave of the AV node (it’s what carries the current from the top heart chambers to the bottom chambers).   I am currently on a 30 day holter and event monitor.  So I am wired up and hoping that it is not my sinus node giving out.  I am fully dependent on the pacemaker now so I don’t know why I am fearful that my sinus node isn’t working, I guess I have a false sense of security with only 1 node being broken.  If for whatever reason my pacemaker gave out though I would be a world of hurt. 


I’m looking back at the pictures from last year that make up my 2015 calendar, I had titled March, “Clowning Around” for the picture of the kids with Ronald at the RMH next to the ambulatory building at PCH. We spent almost 1 full day/week there last year at this time getting his infusions and his weekly checkups.  After 3 months going around in circles with the insurance company and his Physical Therapy and Occupational Therapy providers, I finally closed out ~$2600 in unpaid Physical Therapy bills.    I said this last year but I really hope 2015 is less eventful than 2014.   

Friday, February 6, 2015

BMT Day Video Post - Link

For some reason, the video link did not appear in the email that came out so I am reposting the URL:


Sorry, I'm not an expert on Blogging and YouTube!  :)

Thursday, February 5, 2015

Coleson's BMT Day Video

It's taken me a long time to put this video together of Coleson's BMT day.  It's 9 minutes long and cannot be played via iPhone, so it needs to be viewed from a computer.  The first half is filled with all of our BMT day supporters (friends, family, colleagues) in their Coleson's Courage T-shirts which was organized by one of my best friends, Emily.  I was surprised to start receiving these pictures the day of his BMT and it helped knowing there were so many people lifting us up on that day.  If there is a missing photo of a Coleson supporter, please let me know and I can easily add it to the video.   The second half of the video is the BMT and post-BMT days.  The actual transplant itself is a blood transfusion so though significant, there isn't much to it.  It's the days of Chemo and other protocol leading up to it, its the dark days afterward where his own cells are no longer reproducing yet his new cells aren't either, it's the days, weeks, months, years after BMT that make his one of the most incredible journeys. 

So much has changed since this day, mostly for the better, but as I play it, I see two angels who were with us that day but are not today.  A reminder that life is precious no matter how old you are, no matter what your battle. 

Tuesday, January 27, 2015

Surviving Disney World, MPS Conference and the Holidays

Several of you have mentioned my blog recently and it’s been a while since my last post.  I decided to try to take as real of a vacation as I could this Christmas and that included a vacation from social media, technology, etc.  Most of my vacation time is spent in waiting rooms, Dr.s Office, hospitals, etc. and after the past year (past two years really), I needed to focus on my family and myself. 

I never updated the results of the “Be The Match” run/walk.  Thanks to many of you, I was the second place individual fundraiser with $1245 and Coleson’s Crew came in 4th overall with $2450.  We had a good team of walkers join us during the race including Coleson’s BMT brother Caleb and his family from Illinois.  It was a pretty warm day and Coleson decided he didn’t want to be in the stroller so we carried him the 3.1 miles!  In November my good friends Jenn and Janice along with Sole Sports put on a Ronald McDonald House dinner, (I think that makes 5 RMH dinners in Coleson’s honor in 2014) and Sole Sports wants to be involved in next year’s Be The Match run/walk.  I’m looking forward to their support.      

We had a fairly good November (as I recall it went by so fast).  We started out with the neighborhood garage sale and I finally said good bye to all my infant stuff, a bittersweet event.  Most of it I ended up donating to Maggie's Place, a home for pregnant and new mom's who have no other place to go.  I also donated some of my work clothes as Maggie's place helps them find jobs and they need professional attire.   That same day we had Peyton's 5th Birthday Party @ Pump It Up, a bounce house place that seems to be "The Place" for birthday parties this year.  We've gone to about 6 or 7 in the last 6 months.  I can't believe she's 5 already!  She got to bring "Socko" the class sock monkey home for the weekend and we enjoyed several adventures including quad riding, horse riding, eating out (I posted about that awful day).  We also go to enjoy Thanksgiving with our good friends the Richters.
In December, I did the annual "Hot Chocolate Run/Walk" with some of my good friends.  The run's charity is the Ronald McDonald House so it's another way we are able to "give back" and at the same time have a couple of hours of much needed girl time!  Although we have learned that only $.75 goes of the race fee actually makes it back to the RMH which is a bit disappointing.

Coleson had his 4 top front teeth extracted.  Going through the BMT process and the chemo makes the kiddos teeth weak, thin and prime for cavities.  Through much of the BMT, their gums are swollen such that you can barely see the teeth, much less brush them.  So this Christmas, he really did want his, “two front teeth” plus the next two as well!  Peyton was curious if the tooth fairy was going to come and how much money she was going to leave him.  However, I did not want to take the excitement away from Coleson of losing his first tooth and putting it under the pillow so I told Peyton that I was going to ask the Tooth Fairy to wait until he did lose his first tooth naturally and then we would put all of them under the pillow.  It was funny to watch Coleson explore his gums with his tongue and to watch all the silly faces that resulted from it.  He had a hard time keeping binky in his mouth too so I was hoping we would be able to get rid of it for good.  However, he’s gotten used to the gap now and has found a way to keep binky in, although it does fall out more at night.  He doesn’t look that much different since his teeth were so little and still partially in the gums yet anyway.

He had to have it done at Phoenix Children’s Hospital under sedation and so it was a very nerve wracking procedure for me.  I actually went into the OR room and held him as they masked him which was a bit tough for me.  However, he is starting to remember what is about to happen when the nurse brings out the Purple or blue hospital PJs for him to change into and I hope it comforted him just a little to have me hold him during that scary time.  During the holidays different organizations and groups sponsor and decorate Christmas trees in the hospital.  We were in a different OR than the normal OR and there was only a single sponsored Christmas Tree.  As luck (or fate) would have it, it was the Sole Sports sponsored tree.  It made the process a little easier knowing our friends were “there” with us! 

And then there was Disney World! (And the MPS Conference too.)  We had a great first day at Disney World with the kids.  Peyton got to ride Splash Mtn. and Thunder Mtn.  (but not Space Mtn. since she wasn’t tall enough).  The kids also got to meet Cinderella, Rapunzel and Tinkerbelle (Paul’s favorite) but if you ask Peyton her favorite part was going to Bippity Boppity Boutique where she was made over into a princess.  I don’t know how she sat still through the hair as she doesn’t sit that well for me when I do her hair… She however embraced the part and curtsied thereafter to anyone who spoke to her.  I was feeling like we conquered the first day pretty well and were right on track to make it back to the hotel to check in for the conference on time until she wanted to go on the new 7 Dwarf’s mine ride.  She and Paul left Coleson and I at the Dumbo play structure (a hidden gem we discovered way too late in the day).   1 hr and 15 mins later… needless to say, we were a little late to the dinner and missed getting back out of the hotel for Mickey’s Christmas.

The conference came and went so fast and like Disney world, I think you have to go there once to determine how to get the most out of it in future years.  We got to reconnect in person with some of our MPS friends which being that we are all so far apart was probably the best thing about the conference.  I also enjoyed meeting all the rest of the MPS 1 BMT families that I did not yet know and hearing their stories.  I also enjoyed the talks from the Doctors and Researchers about new trials and advances in the MPS world.  Being an “orphan” disease means MPS does not get a lot of funding and grants and I am sad to hear that much of the research/trial funding is soon to expire.  Donating to the National MPS Conference is one way you can help keep these trials and research alive.   The conference is a very overwhelming and heartbreaking experience at the same time.  Not all of the MPS diseases have treatments, some treatments have just become available for some of them and in general no matter what type of MPS one has, it is a nasty disease.  We are in the lucky group… MPS 1 kids who have BMTs.  (If you can imagine we are lucky).  There are families there who have lost their kids or who are watching their kids regress day by day knowing that one day the regression will stop forever (but not in the positive way).  I too know that Coleson’s time here is shortened than the average person but we have hope that he will make it to his 20s and maybe into his 30s.   Of course we still have hope that it will be much longer than that but we don’t have any evidence that that is possible yet.  So going to an MPS conference comes with mixed emotions. 

Also at the conference the 24 hr stomach flu was going around.  Coleson got it Thursday night but was good to go by noon the next day while Paul got it Saturday morning and couldn’t make it out of bed the entire day.  I took the kids and met my family at Magic Kingdom but by noon I wasn’t feeling so good myself and left Peyton with my family and Coleson and I spent the rest of the day in bed as well.  I didn’t have it as bad as the rest but it made packing for our 5:00am departure time a tremendous task. 

Then we headed to Michigan for Christmas.  The first without my Dad.  And though we carried on just as if he was there, there was obviously a big void.  We made it through without a lot of tears but my sister, Jae, made us memory books of Dad and Aggie had Teddy Bears made out of my Dad’s flannels and overalls for all the grandkids which made holding back the tears pretty difficult.  Included with the bears were pictures of each kid with Grampa wearing the clothing the bear was made from which made the bears extra special. 
We made it back to AZ to enjoy a week’s worth of vacation and I feel like I was able to get a lot of things done that I’ve had to put off over the years.  We were blessed with more gifts from “Coleson’s Friends” which is very helpful when we are approaching the new year and a new set of medical deductibles.  We basically hit the Maximum out-of-pocket costs within the month of January so we are very appreciative of all of Coleson’s Friends, especially O&C who have become our extended family and biggest supporters. 

I realize this blog has gotten too long to include the events of January so I will have to pick this back up in another week or so. 

Thursday, November 13, 2014

My version of a bad day

Just to warn you this is a "venting" post perhaps a rant. You know, I have learned to come to terms with our new "normal", earning frequent "traveler" awards from Phoenix Children's Hospital, the endless Dr. appoints, the mountain high stack of bills and insurance claims, my ear permanently red from all the phone calls scheduling appoints, dealing with the insurance, following up with Dr.s... the list goes on...  And I've adjusted to that normal as stressful as that is but when things with that new normal don't go right, I really struggle with keeping my composure.  

So Coleson gets a weekly Enzyme Replacement Therapy.  It is about a 4-5 hr. infusion of an artificial Enzyme that costs $10,000 a week!  Yes, that is right, the drug alone is over $1/2 million a year. That is why I call him my Million dollar baby.  It's not fun since he has to have a needle stuck in his port and he's hooked up to an IV so he's fairly limited in what he can do.   Typically though he naps for about 2 hrs of it and watches TV once he wakes.   We have been getting them at home since around May.  We had an awesome home health care nurse that gave it to him and she had zero issues.  The only 2 times we have had issues with this is when we've been in Michigan.  The first time, we ended up in the ER because the nurse could not get the heparin in after the infusion (heparin is what prevents clotting in the port).   This was after a few attempts to re-access his port (meaning a few more needle pokes).   The last time we were there for my dad's passing we had to scramble to get things arranged and manged to do so but somehow the pump settings changed during the infusion from ml/hr to mg/hr. So about 2.5 hrs into the infusion, the nurse noticed the bag was still full of drug and it took us a little while to figure out what was wrong.  Again leading to multiple needle pokes.   Yesterday I get a call from a nurse saying she's schedule to do Coleson's infusion today.  She sounded a bit flaky about it so I was already worried about it.  Our regular nurse had not said anything about not coming.  The first thing that went wrong (notice I said the First), was that she forgot to unclamp the line after she accessed him (stuck the needle in him) so she did not get any blood return (indicating she was in fact in the port), so she re-accessed him (a new needle and poke), before she finally figured out what she was doing wrong.  Clamping and unclamping the line should be instinctual for a nurse.  At 5:00ish, I came out of my office to see how close they were to being done when I looked at the drug bag and noticed it was completely full, meaning he had been hooked up for over 4 hours for no reason.  So we tried to troubleshoot why and without knowing the root cause, we re-started the process and kept a close eye on the line to ensure the drug was moving through it.  The initial infusion rate starts at 2 ml/hr which is like watching a snail crawl.  This meant that he would be hooked up for another 4-5 hrs. and we were planning on going out to dinner for Peyton's birthday.  Fortunately our nanny was able to come back to stay with Coleson so Paul and I could take Peyton out still.  When we returned from dinner, I noticed that Coleson's chest was swollen.  This means the fluid is going into his body and not the port (vein).  So I immediately stopped the infusion, told her we were "done" and when she tried to flush his line, the needle practically popped out.  There was no way I was going to allow her to try to put the needle back in so we called the Dr. and he said it should be Ok to leave it until this morning to allow the swelling to go done.  Rachel did tell us after the nurse left that they had already changed his dressing once (the tape that keeps the needle in) which should have been a clear indication to the nurse that the needle was in fact NOT in the port.  At one point I had to play referree b/w Paul and the nurse as Paul cannot tolerate incompetence and the nurse was trying to justify her actions.  Fortunately he does listen to me when I try to diffuse the situation.  So the nurse left, I'm sure she felt awful as well, and I do feel bad for her.  But we just wasted a $10,000 supply of critically important drug and put Coleson through a lot of unnecessary pain and frustration (not to mention me as well).  It's events like these that are to blame for my unusually high blood pressure readings recently.   To top things off, I just ate some apparently bad, though freshly opened, not to expire until December Turkey pepperoni.  There's another $5 down the train for antibiotic free, uncured, turkey pepperoni.  

Thank goodness I have this forum to release my frustrations, my job to keep my mental health in tact, and my friends and all of you to keep me going.