Welcome

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, August 15, 2014

Faces of the Ronald McDonald House - Upper Midwest 2013

How does one express what it's like living at a Ronald McDonald House for 5 months?  If I were on Glee I would do it through song.  But since I don't have a good singing voice, I put together this video from RMH Upper Midwest Summer - Fall 2013 inclusive of many of the amazing kids (patients and siblings) and their equally amazing parents. It's 15 minutes long but how do you condense 5 months into much less than that? I will always appreciate the Ronald McDonald House Upper Midwest and the friends I met while there.  

This video contains music so is not available to be viewed on phones. Sorry, you'll have to use your computers!
 
http://youtu.be/V-GM9mJX6_Q

Monday, August 4, 2014

T+365 +++ Happy Re-Birthday Coleson and our summer Trip


I know you all have been waiting patiently for an update our trip to Minneapolis... I have been pretty sick since we returned home with a Sinus infection and as I am going on day 7 of this crud, I'm only feeling moderately better. I'm even on the z-pack.  What's worse is Coleson has the same thing and even though we are 1 year post transplant I am monitoring him like a hawk.

As I logged on to write this post I realized that I never published my last post from a month ago. So I apologize that it has been 2 months since you've last received an update. 

Well our trip to Minneapolis was a very busy, mostly positive, very emotional one.  We got to spend our first day having lunch with friends Nicole and Kelly and then to Janna and Steve's for a family afternoon and dinner. 


Bright and Early Monday morning kicked off our Jammed pack week of Dr.s visits, procedures and celebrations.  First up with the neuropsych evaluation.  This is never a fun appointment!  After a few hours of testing cognitive, social, speech, fine motor and gross motor skills we were told that Coleson is still testing at the average level for the cognitive, social and speech skills but is slightly below for fine and gross motor skills.   This was to be expected but of course you never want to hear it confirmed by a Dr.  We then went to endocrinology appt. where we heard some average news again.  He did grow in the past year but remained on the same growth curve with is the < 1% compared to kids his age.  We know he will be exceptionally short - hopefully he will make it to the 4 foot range, but I was hoping he has made up some growth as he appears to me to have been growing so fast.  Next we were on to see his Dr. Miller, his BMT Dr. and have an EKG.  This appointment was way too quick.  There are so many questions that I didn't get answered as we were already running behind schedule to get his chest X-rays and to drive to St. Paul to Gillett's Children's hospital to meet with our first orthopedic Dr.  Since he had not had labs drawn yet, this was just a clinical observations but Dr. Miller thought he looked great.  The neurologist quickly assessed him as well though by this time he was sleeping so again, a quick observation/assessment with positive remarks.  We then re-scheduled his chest x-ray and went to St. Paul.  I tell you, it was heartbreaking seeing all the kids with some very serious orthopedic issues.  It was difficult to get a leg X-ray but we managed with both Paul and I holding him.  Dr. Walker said he had typical Hurler hip/leg development with incomplete hip sockets that most likely would need surgery in a couple years to fix.  He is slightly knock kneed but it is too early to tell if this will correct itself or if this too will require surgery in the future.  After an exhausting first day we headed to the RMH for dinner. 

It was great to see the staff and to see some of the renovations that the All-Star organization helped pay for.  We did not expect to see Peyton's friend Coco and Nana to still be there but unfortunately for them, they still were.  We thought they had gotten to go back home to Saudi Arabia (and they thought they were too) but at the last minute, when they pulled Coco's line out, discovered fungus in the line and so she had to stay for treatment.  We also were disappointed to see another family still there... Carter had neuroblastoma and after enduring and surviving what I can only say was a hellish treatment of chemo, radiation and BMT, they had actually gone home, cancer free.  They returned 3 weeks later after he complained of back pain only to find 3 more lumps in his back and were told there was nothing else they could do.  So they were there just for pain management as Carter lived his last days.  The RMH was busy with big families.. more people then were there last year, there was not an empty table for dinner.   Paul unloaded about 25lbs worth of soda tabs that traveled with us from Phoenix.  We filled up half the container.  Thank you to all of you who collected these for us especially Amanda and Charlotte. 

Tuesday was an early morning as Coleson had surgery to repair his hernia and while sedated to get an MRI, EMG (for carpel tunnel) and his chest x-Rays.  I'm not sure it is a good thing when you go back for pre-op and you know the pre-op nurse, the anesthesiologist, both surgeons, etc.  However, it is comforting to have a set of Dr.s who have worked with Coleson before.  After a 4 hr. sedation and procedures, we met back up in Post-op. He was very sore after his hernia surgery and he barely made it up in time for us to make it to his pulmonology appointment at 3:10.  After a painstakingly long appt. which could have been shortened greatly (especially considering what Coleson had been through that day already) we received positive news that his lungs looked good and we could start to wean off the inhalers.  We had a fun dinner with our BMT family (Siegels, Christensens and Bells). 

If you thought our week sounded exhausting already, Wednesday was actually our busiest day.  We kicked it off with an eye exam where again we had slightly positive news in that his nearsightedness and astigmatism mostly canceled each other out so wearing glasses is not necessary, however is good practice if we can get him to put them on occasionally.  We then had Physical Therapy who gave us some recommendations then an echo and cardiology assessment.  It was this appointment that we received the most frustrating news...she wants to fix Coleson's PDA which has been a known issue since before BMT but wasn't worrisome enough to delay BMT.  But now, he should really get it fixed.  Wait, weren't we just in surgery the day before?  I was hoping we were done with surgeries for a while.  And not only would this require 1 surgery but 2 surgeries as he should really get his port removed for this surgery and the replaced after infection risk has passed.  Lovely! 

We then moved on to audiology testing and ENT.  He only lasted so long in the sound booth as by this time he was exhausted.  They observed no change from previous assessments so we need to stick with hearing aids and speech therapy but at least both tubes are still in his ears. 

Finally, we were able to go to the RMH where with the help of our Honeywell family and super boss woman organizer Janna, we pulled off an amazing dinner.  Paul and Jack (Caleb's dad) were the grillers and Cary was the runner with all the chicken and hot dogs.  There were many Honeywellers there to serve and whom made all kinds of salads, beans, cookies, etc.  I am so fortunate to have the support of my work place and to be in a location to have their support.  It was a crazy night for me as I met two new Hurler families that night and we celebrated with our BMT family 4 1 yr. anniversaries (Caleb, Coleson, Lizzie and Ari).  It was a night we had looked forward to for a year and were so appreciative that we got to celebrate it together.  Another Hurler family we are close with was also there that week so we also got to celebrate Braden's 8 year anniversary. 





Thursday was our last day of appointments starting with the Orthopedics for the spine.  We heard fairly positive news thank goodness in that the only issue he really has is the slight kyphosis which is measuring at 42degrees. Otherwise the rest of his spine and neck looked good.  We need to keep him strengthening his back so the kyphosis doesn't worsen and may even get better.  We had our first break in appts so we headed back to the hotel for a nap...and I ran over to the Mall of America for a 2 hr. power shopping.  I only hit 4 stores but it was enough for my credit card company to call me to verify my card had not been stolen!  That tells you how infrequently I shop! 

We finished up our day at the Orthopedics for the wrist where again, we got positive news in that he shows no sign of carpel tunnel or digit trigger issues.  We went back to the RMH to have our last day with our BMT family and to of course to play Bingo! 

Friday Peyton and I went to the water park with the Siegel's and then we all went out to lunch before we said our "see you soon"s.  They will be coming to Phoenix to run the Be the Match 5k in October, a cause so near and dear to us.  (I will posting a blog update on this soon). We made it to Lincoln Nebraska by 9:00 pm and on Saturday to Elizabeth Colorado where Oscar and Charlotte welcomed us into their home for the night with a nice dinner and night of conversation.  Charlotte and Oscar have supported us greatly over the past year in so many ways.  We are so blessed to have them as part of our extended family.
We left Co. at 7:00 am for our longest drive of 12 hrs making a stop at Little Anita's in Albuquerque and then into the up and down of the Northern AZ mountains.  We had amazing weather until we hit ALB and AZ where it down poured and was dark for hours until we hit the valley of the sun.  You would not know we were in the same state.  14 hrs after we piled into the car, we made it home.  Upon which my sinuses started to fill and rendered me fairly useless for most of the week. 

It was an exhausting vacation.. if you can call that a vacation.  I don't know when we will be able to take a real vacation which isn't centered around hospital visits or Coleson's disease.  It was an exhausting year...but we survived it with the support of amazing friends and family. 



Sunday, August 3, 2014

T+331 One Year Ago we arrived in Minneapolis

One year ago today, we arrived in Minneapolis after a 28hr, 1820 mile car ride with stops in Albuquerque, Colorado Springs, Peyton Co., (a special stop just for Peyton) and  Lincoln, NE.  We had no idea what the next 5 months would have in store for us nor did we know if we would be returning with both kids, but we were certain that the bone marrow transplant was Coleson's best chance to extend his life and help stop the progression of his very awful disease. 

A lot has happened since my last post, and this delay in posts means I am simply too busy having fun with my family (not to mention being really busy at work).  The most important event was Coleson's hickman removal and his port placement in mid-may.  This allows him to be submerged in water again and he has thoroughly enjoyed baths and swimming.  Not to mention so has Peyton!  We have been swimming practically every day!  Peyton has been showing him how to swim and even agreed to put on her "hippo" (lifejacket) to show Coleson how he can swim on his own.  He much prefers holding on to mom though!  I think the "hippo" stretches out his shoulders more than he is comfortable with.  He has limited range of motion from the disease.  However, in just a few weeks he has learned to swim (rather jump) from the steps to me standing a couple feet away (underwater of course).  I most enjoy not having to do dressing changes.  I hated how much it hurt him. 


I always hate to send my baby off to surgery(it never gets easier), but he was all smiles and giggles before they took him back and this always helps. 


Peyton has been missing going to school but did go to School camp and Gymnastics camp to help bide her time.  She also started swim lessons.  As mentioned before, she is a little mermaid when it comes to swimming and she could stay in the pool all day long but she needs to learn all actual strokes and kicks.  She is more interested in going down the big slides after swim lessons are over.  Have I mentioned how fearless she is!  She looks like Paul but she is my daughter! 
 
We also have been busy having play dates with friends and I now can take both kids.  There have been too many to mention but some of the favs over the past month have been the butterfly museum, playing with 10 new pups, and most recently seeing Peter Pan The Musical. 
Tinkerbelle and mommy!



Peyton teaching Coleson how to drive
























I finally took Coleson to get his glasses.  Both kids had fun trying on glasses but now that the lenses are prescription strength, he doesn't like them as much.  He much prefers Daddy's aviator sunglasses!   I couldn't get a pic of him fast enough but he is adorable!
By the way, Coleson's hair is getting really curly and long, though thinning out from its thickest point.  I have been tempted to get it cut but want to wait until after we return from his 1 year visit in Minnesota.   Meanwhile the body hair is slowly thinning out as well.  Can't wait until this all goes away!




Lastly, we helped serve dinner at the Ronal McDonald House @ Phoenix Children's hospital this past weekend.  A neighbor organized the dinner in Coleson's honor, Thanks Teresa.  We had lots of food and volunteers. I'm looking forward to serving dinner at the RMH Minneapolis when we are there in July!



 




Monday, May 19, 2014

T+292 Angel Wings come in 3s

Today is a sad day in the MPS I family as two Hurler kids earned their Angel wings.  One actually was an adult but she had had a transplant as a child.  I didn't know of her but she must have been one of the first to have had a transplant.  She was 27 years old.  It gives me hope that the woman made it into her mid-20s but at the same time it is a reminder that the BMT was not a cure, just a life extender.. and for how long, no one knows.  In fact, I don't know how old the "oldest" Hurler kid has lived to be.  She may have been it.  The other ones that I am aware of that are Hurler and had transplants are in their early to mid-20s.  She passed from complications with surgery, I don't know what kind of surgery.  These kids undergo so much trauma in their life from the BMT to multiple surgeries, sedations, etc.  The body can only handle so much.

The other was a 10 month old baby who was 27 days post transplant at University of Minnesota.  Baby Vincent's death hits me particularly hard as it was just 9  months ago that Coleson was at that mark at the same place.  I was in contact with his family in the beginning and was planning on seeing them when we go for Coleson's 1 year in July.  To see pictures of him, in the same hospital PJs, in the same hospital room, with the similar looking facial features is very surreal.  That could have been Coleson.

As you read this, Coleson will be in surgery to remove his Hickman line and get his port.  Please pray he endures yet another sedation, another surgery.  I remember thinking when he got his inguinal hernias repaired at 10 weeks old that I hoped it was his last surgery.  Boy, how I long for just the "simple" surgeries of a hernia repair!  I wear very different glasses now.

They say things happen in "3s" so in other sad news, a colleague's husband passed away last week after what I can only describe as an extraordinary fight with appendix cancer. He was diagnosed soon after Coleson was born.  There should be a picture of Joe Kahler in the Hall of Cancer Fame.  His Courage, strength, determination and his love for family is what I will remember most about Joe.  He put a check next to many items on his bucket list even after diagnosis that many would not have.  

On a positive note, Coleson was weaned off Potassium today and tapered off 1 dose of his BP medicine. He also has been switched to monthly Dr. consults with bi-weekly labs.  This means I only have to go to PCH once/month and get his labs done at the PCH clinic in the east valley making that trip a lot shorter.

Please hug your kids, your spouses, your siblings and other family members today and be thankful every day for what you have.  I know I am!


Tuesday, May 13, 2014

T+286 Wear Purple on May 15th for International MPS Day

This Thursday is International MPS Day.  Wear purple in support of Coleson and all other MPS families.  
Also, today was Coleson's last dressing change. Hooray!  Next Tuesday (5/20) he goes in for his line removal and port placement.  He will finally be able to take a real bath and go for a real swim!

Here is a short You Tube video narrated by Alec Baldwin on lysosmal disorders.

http://youtu.be/61DRmSFgSFA


Here is some info on MPS as provided by another MPS mother.Thanks Amber Mongan

Treatment for MPS I (Hurler syndrome): Successful HSCT (Hematopoietic Stem Cell Transplantation) has been performed for children with Hurler syndrome since 1980. The immediate benefits include correction of the enzyme deficiency and clearance of glycosaminoglycans (GAGs). Long-term benefits include the possibility of long-term survival by protecting the heart, lungs, and brain from the effects of progression of the MPS disorder. Other organs and tissues can also show benefits from the HSCT; these include the eyes and ears, liver, spleen, joints, airway, etc. However, it should be noted that many children are still requiring a variety of orthopedic surgeries despite a successful transplant. While the term “cure” should not be used, HSCT has the longest track record of any effective therapy for Hurler syndrome, including the ability to preserve cognitive function and development in the normal range. 

Brought to you by Be The Match: WWW.BeTheMatch.OrgA bone marrow or cord blood transplant is the only treatment that can stop the effects of Hurler syndrome at this time. A bone marrow or cord blood transplant begins with chemotherapy, with or without radiation, to destroy the diseased cells and marrow. The transplant replaces diseased blood-forming cells with healthy ones.
The type of transplant used for Hurler syndrome is an allogeneic transplant. This type of transplant uses healthy blood-forming cells from a family member, unrelated donor, or umbilical cord blood unit.
For an allogeneic transplant, a patient gets chemotherapy, with or without radiation, prior to transplant to prepare his or her body for the treatment. Then the replacement cells are infused into the patient’s blood stream. From there, the cells find their way into the bone marrow, where they start making healthy red blood cells, white blood cells and platelets. These new cells have the enzyme needed to break down GAG and stop further damage to the body.

It is because of the shortcomings of the current treatments (and the lack of treatments entirely) that organizations such as The National MPS Society, Hunter Syndrome Foundation, Team Sanfillipo, Hunter Syndrome Research Coalition, Ryan Dant Foundation, and numerous other parent based organizations exist. If it were not for the willingness of families to not only say “Something has to change” but also to stand up and do something about it, doctors like Emil Kakkis would have lost funding for research before they were able to bring a treatment to reality for us. These family organizations work not only at funding promising new research, but also at advocating inside of the FDA and congress to educate on MPS, and negotiate the best ways to bring safe and effective treatments through the system as quickly as possible so that families can gain access before it is too late to help their child.
This year International MPS Awareness Day falls on a Thursday (May 15th) so many families will be celebrating with fundraising events today. The success these events translates to saving the lives. It translates to hope. So make sure you ask the MPS Family you love how you can help give them hope today.
“What we needed was one day. Whatever money you could raise in one day, somewhere somebody could use it.” -Mark Dant  MPS I HS Dad

Friday, May 9, 2014

T+283 A Mother's Day Surprise - a Gift from Strangers

I know... you don't hear from me for 3 weeks and now 3 posts in 1 week!  I was just so moved, not once but twice in the past 30 minutes that I couldn't wait to post for fear that I would get too busy again and not share the beautiful gift that Paul and I received today - mostly from strangers!

First a dear colleague of mine (you know who you are) honored me with a donation to the RMH in my name for Mother's day.  It is the best Mother's day gift that I could receive (well, with the exception of a miracle)!

Secondly, an envelope was delivered today and inside several very generous gifts from complete strangers, spearheaded by one of Paul's dearest friends (again, you know who you are!)  I am literally shaking from the generosity of these people who have not met us nor Coleson, but only know us through the stories of our dear friends (and perhaps/hopefully this blog).  And these friends have already done so much for us, in so many different ways.  If those 16 families read this blog, I sincerely thank you, and to O&C, words cannot express how appreciative we are.  You have made this Mother's day, the best I've ever had.

To all you mothers, I hope your special day is/was as good as mine.  I have met some amazing mothers this past year that will stop at nothing (even the US Gov't and health care system) and who sacrifice everything for their children.   And of course, I already was surrounded by amazing mothers both professionally and personally that do the same for their children day in and day out.

Happy Mother's Day!

Thursday, May 8, 2014

T+282 Oh Peyton

It's time I dedicate one of these posts to my other Hurler kid, because when you have one special needs kid, all of your kids have special needs.  You have to work extra hard as a parent to ensure that all of your kids feel like they receive the same amount of attention as the one that requires the special attention.  I have to say, Peyton has been the best daughter and big sister in the world...of course I'm biased! Precocious Peyton, aka Miss P., aka Sweet P, aka.. many other special nicknames, has taken all of our life adjustments in stride. She is curious about all of the medical stuff and loves to go to the hospital, play with the OT, Connie, get her blood pressure taken, her heart rate and all the other medical things that Coleson "gets" to do.  She is sad when she doesn't "get" to do them with Coleson.  
Besides being the best big sister patient ever (and wanting to be a nurse or a doctor), she has become an amazing swimmer, gymnast and horseback rider!  Since heating the pool this winter (knowing this is one thing Coleson will eventually be able to enjoy), she has become a fish!  Or rather a mermaid.  She swims back and forth the length of the pool, under water the short ways and above water the long ways.  She can dive down and get a small key ring off the bottom of the floor as well.  
She has gotten to "ring the bell" at gymnastics a few times recently and her fearlessness enables her to try all the scarier tricks.  You should see her bounce around our house from the balance beam to the back of the couch to the trampoline to the crashpad.  Our house has become a min-gym, mostly to help Coleson's gross motor skills but Peyton obviously loves the new equipment as well!  I think I've already mentioned how she has aced the monkey bars and has the blisters to prove it!
She also is starting to ride her horse, Tony, all by herself; completing turns and stops all on her own, much to Paul's delight!  We don't own Tony but I can predict we'll be buying another horse in our future.  A new horse is nothing to Coleson's yearly medical bills after all!   
And lastly she is just finishing her first year of school where she has made several friends.  She aced all of her objectives and the teacher commented that she is very compassionate.  And I agree.  She always sticks up for her friends (in a nice way) and mediates any disputes.  She shares very well.  She also wears her heart on her sleeve and does get very hurt, "Mommy my heart hurts" when someone says something mean to her or doesn't want to play with her.  She will do anything for her friends.  Her teacher also mentioned what a good story teller she is.  And she is, although she likes to tell stories when she really shouldn't as well.  She does have quite an imagination though.  And the things she says continue to crack me up.  Sometimes I have to laugh before addressing the reason she's upset from some of her comments.  If my memory was better, I'd give you more examples, but it's pretty much turned to mush!  She also sometimes breaks out in a British accent like Peppa Pig.  She always sounds much more polite when she does this!
Thanks for letting me post (Ok, Brag) about Peyton.  Don't get me wrong, she does have her moments, but overall I am so proud of her.  I know how hard it was for me as a little girl to adjust to some of my life's big adjustments and though she does get frustrated with Coleson every now and then (what siblings don't?!), she really has weathered this storm very well.  I hope she continues to do so as the storm ebbs and flows for the rest of Coleson's life.  


I don't condone climbing on play structures!
Everything is subject to climbing!