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 23, 2013

4th ERT and 2nd ER visit this week

Today is Coleson's 4th ERT.  He is sleeping soundly now.   He actually slept all night again last night.. that makes it 3 whole nights since his ERT started.  He must have known though that Peyton was going to wake up at 3 AM coughing and crawling into bed with us.  C'est La Vie! 

This week also marked our second trip to the ER.  We actually went a full week without a dressing change over his central line which was good.  However, when we did change it, it was still actively bleeding.  It should have clotted by now and that is somewhat concerning.  Also, he broke out in a rash that looked like Hives.  Unfortunately when you have a sick child, everything requires an ER visit.  We can't even go to urgent care (and we have a brand new one that opened up right across the street).  So we packed it up on Tuesday and headed to PCH ER.  Fortunately there was no one in line so we got right into a room.  I thought it would be a "short' visit however they wanted to take X-rays to ensure his line was still in place.  After 5 hrs, we went home with just the advice to keep an eye on both.  I guess that is a good thing.  His rash has mostly gone away but his central line is still bleeding.  We are waiting for the surgeon to come take another look at it which means we'll need to change the dressing again.  His poor skin is so tender (and sticky) from all the dressing changes. 

Other than that he seems to be doing well with the treatments.  He has gained 1 1/2 lbs since our trip to Minnesota which I take as a good sign.  He is more energetic than ever and displaying typical "boy" like behavior. 

We are still waiting on word that they have confirmed the Bone Marrow Donor.  As of early last week they had found 2 possible matches (8 for 8 choromozones) who had provided blood for the next round of testing.  One female and one male.  It's weird to think he will have someone else's DNA in just a few short months and am thankful already for these 2 individuals to be so selfless.

I also have been in contact with a few other Hurler Mothers over the past week.  Of course they are 1000s of miles and timezones away as there are very few of us that exist.  Regardless we share an instant bond and I appreciate greatly their words of encouragement and advice.

Peyton continues to crack us up.  This week she's added to her vocabularly with, "Down the Hatch", and "That's Interesting"  and she started crossing her legs like a lady when she sits.  She is only 3, right?! 

Well, my boy is waking so it's time to wonder the halls and flirt with the nurses (him not me)!

Wednesday, May 15, 2013

Text to Cure MPS - Today is National MPS Day!

Please join us today in making a difference in the life of my family and with many families like mine, living with MPS and related diseases.  In honor of today, I am personally asking that you to donate $10 or more to fund research for a cure and support for families with MPS, through the use of your mobile phone.  Please do the following:
  •     On your cell phone send a text message to 80888
  •     In your message box type CUREMPS
  •     A message will notify you in less than 30 seconds to confirm your generous donation to the National MPS Society
  •     Follow the directions and reply by typing YES
  •     You will receive another message thanking you on behalf of the National MPS Society for your donation.  You will be billed for this donation through your mobile carrier such as Verizon, Sprint, AT&T, etc. Verizon. Simply use your mobile device to complete the transaction.  

Your donation today makes a huge difference for tomorrow.  Help us remember all the children and adults who suffer from MPS and related diseases.  To learn more about MPS and the National MPS Society and how your dollars really matter– please visit www.mpssociety.org.  Thank you in advance for your support today!

Again – it only takes a few minutes to use the above message to make a huge impact in funding.  Please forward to others you think would want to donate.


Sunday, May 12, 2013

Happy Mother's Day

One of my best friends, Christina, sent this to me:

"my Mama told me sometimes people have to cry out all of their tears to make room for a heart full of smiles"

I personally had some of both today. 

Happy Mother's Day to all you mothers! It it is the toughest and most rewarding job on earth!

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!

Monday, May 6, 2013

Create MPS Awareness with our Legislators

Resolution to Recognize National MPS Awareness Day on May 15th

More awareness may mean lawmakers supporting increased funding for research and new researchers entering the field.  Simply stated, increased awareness is the all important first step towards cures for our diseases.  Each member needs to hear from at least 10 consituents before taking action.  The more congressmen/women we reach the better chance we have  of being heard so pass on to friends from other states.   
One day each year we pause to celebrate and remember all those whose lives have been impacted by MPS and to raise awareness about these devastating diseases.  National MPS Awareness Day is important because it honors everyone who has been diagnosed with MPS and related diseases,  including those who are no longer with us, and to be thankful for the strength and support we both receive and give to each other.   U.S. Senator Lindsey Graham from South Carolina is once again sponsoring a resolution to recognize National MPS Awareness Day on May 15th - and we need your Senators to add their name to the resolution.   This is an important opportunity to increase awareness of MPS.

Thursday, May 2, 2013

First Trip to the Emergency Room

So we experienced our first trip to the ER last night.  The sterile dressing that protects his hickman line keeps coming off.  The way his body is shaped with his Pectus (concave chest) and his protruding belly give him a lot of "curves" and in the 100 degree Arizona weather he is sweating alot.  So instead of changing his dressing 1/week we've have to change it 3 times already.  Tuesday night the home health care nurse changed it and it was a little irritated around the insertion point.  Wednesday the dressing was coming off again so I called Home health care out again.  This time the insertion area looked pretty bad.  So instead of having dinner with friends Lisa and her sons Grant and Deacon,  Coleson and I headed to PCH ER and Lisa watched Peyton for me. (Paul is traveling)

We were in the ER until about 12:30am after taking a CBC and blood and skin cultures.  They sent us home with an oral antibiotic until the cultures come back.  Dr. Aleck and Dr. Orchard think that this is just a skin irritation due to all the dressing changes and sweat but because it could be an infection they do not want to proceed with his ERT tomorrow.  So unfortunately he won't be getting treatment this week and it delays his BMT.

So we are just keeping an eye on his dressing and applying extra tape around the dressing.  As we see the tape coming up, we reapply.   I asked Home Health Care to send us different dressings.  The one we received at the ER last night seems to work better than the others.  I hope this does it as I don't want to delay any more treatments.

Otherwise Coleson seems to be doing good.  No fevers to indicate he has an infection and is generally acting like normal.  Also, thanks to Lisa for being here to take care of Peyton!  Peyton seems to be rolling with the punches pretty well and likes to tell her friends about her brother's owies.