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.

Thursday, May 9, 2013

First ERT at PCH

Today is our second ERT (Enzyme Replacment Therapy) and our first one at Phoenix Children's Hospital.  Coleson is doing great, he fell asleep about 1 hr into the 5 hr. process and slept for 2.5 hrs.  He is the first ERT Hurler's patient here that any of the current staff remembers.  Genzyme (the drug manufacturer) had to put on a special clinic about the drug to the nursing staff.  Needless to say, he is one in a million on so many different levels. The nursing staff was all awaiting for his arrival today.  When he did wake, he roamed the hallways with mom trailing him with his drip line.  He charmed the whole staff.  Here he is enjoying an Oreo.
Yum Yum Oreo Cookie!

We can already see improvement since his first ERT 2 weeks ago.  He seems to be much happier (which could also be due to his new ear tubes), his bowels seem to be working more "normal" and his joints seem to be a little looser, although very minor improvement (it's not expected to have dramatic improvements in this area).  Also, he slept for 9 hrs. straight 2 nights ago...which means I slept 9 hrs. straight 2 nights ago.  I haven't done that in about 2 years!  Last night it wasn't quite a long but he had a late start to his night after a early evening nap with Connie.  

Connie (a good friend's mother) babysat while Peyton and I met up with our meetup friends at the park. Unfortunately Coleson will have to miss out on most meetup playdates for the next year and a half while his immune system is supressed.  I think Peyton has my sense of adventure though as she fell in love with this Zip line playground feature.  Her face doens't show it but she loved it.  At one point I think I pushed her back and forth 20 times non-stop.  She's a strong and tough cookie!

Don't let the face fool ya, she loved this!

Meanwhile I have met (via email) another Hurler mom who's son was diagnosed and treated at about the same age as Coleson.  He too has a big sister.  He is now 8 and has multiple surgeries since his BMT which I expect we will too. His main issues were orthepedic which I assume will be ours as well.  He does have minor hearing loss in both ears with multiple tubes placed.   But overall he is a healthy, happy boy who enjoys golf and basketball.   He seems to be the most "like" Coleson although all of these cases are unique in regards to the impact on the body, the treatment provided etc.   These stories give me so much hope and inspiration.  I just wish there were closer so we could meet.  As far as I know we are the only Hurlers pediatric case in the valley.  Their might be a Hurler adult in the valley but not certain and not certin if he is Hurlers or Schaie or inbetween.  (Hurlers is the severe form, Schaie the more moderate form that onsets later in life).

Many of you have offered to help in so many different ways and believe me when I say I am trying to think of ways for you to help. With that said, this is going to be a life-long process.  It doesn't end with the BMT, it is just the beginning.  As he ages and grows, the affects on the body that have already occured will become more problematic and most likely will result in many other surgeries, doctor visits etc.  Trust me when I say there will be plenty of time for you all to help. 

Regarding financial donations, we are still trying to determine the best "place" for these.  Of course we will have huge medical bills for the rest of his life but I am more concerned with assissting in the research and the Drs. that are devoted to finding treatments/cures/prevention of MPS.  We are doing our own research to figure out what research/Drs. may most likely benefit Coleson specifically. 

In the meantime here are other suggestions:
  • Donating to the National MPS Society (Located in North Carolina)
  • Donating to the Ronald McDonald House (local or the Minneapolis one specifically where we'll stay)
    • This includes saving/dropping off soda and beer pop tabs (I can take any locally collected when we go to Minneapolis)
    • Donations of linens, consumable products, food, kids toys/games, etc.
  Most likely we won't do any bigger fundraising activities until early next spring.

Again, thanks for all the support!  We feel your prayers!