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.

Saturday, June 22, 2013

Seven Falls and "Peyton"

We woke to a beautiful Colorado Springs morning and headed to see Seven Falls.  Peyton and I walked up the entire set of stairs to the top of the falls.  She even wanted to hike the 1 mile trail but we had left Coleson and Daddy at the bottom so we decided against it.  I don't call her Tenacious P for nothing!  Then we drove through Peyton.  It is a no light little town with a post office and a general store and nothing else.  Peyton thinks this is where she was born!  The rest of the 7.5 hr. drive was pretty boring.  Not much to see in NE Colorado, NW Kansas and Southern Nebraska.  Well unless you count the cows, small towns And fields.  Oh and I can't forget to mention the world's largest prairie dog!  We didn't make that stop.   We plan to make it to Lincoln by 10pm.  The kids are both sleeping now so I am willing to bet we will hear UmiZoomi on the iPads most of the night!  Next stop Minneapolos!

Friday, June 21, 2013

Vegas Baby!

Ok so it's Las Vegas, New Mexico!  A little different than the "other" Vegas.  We spent a beautiful morning in Albuquerque after arriving a little after midnight.  We rode the tram ride up Sandia Peak.  It was a balmy 54 degrees.  A little different than the 110 we left in Phoenix.   Unfortunately we did not make it to the Honeywell site in ABQ as Coleson cashed out after the tram ride and we needed to get as many miles in while we had the chance.  We stopped in Santa Fe and had lunch at a park so the kids could play and then got back in the car for another 5 hrs. of driving.  The kids have been good travelers so far.  Hope to make it to Colorado Springs by 7. Thanks to all who sent us gifts for the kids (& us) for the car ride.  We are following the map from Aunt Em, although a little off course, eating the gummies from Kim, and thankfully have not had to use the dammit doll from Amanda.  We hope to enjoy all our gifts we've received over the course of the next few months.  Oh and thanks for all who collected soda tabs.  We have a couple gallon bags full to give to the RMH.  Lastly, I created a Facebook group called Coleson's Courage for those that are Facebook users.  I traditionally have not been one myself but I find it is a good way to collaborate, especially as now my updates will be daily.  It is a private group so if you want an invite, please email me.

We are on our way!

With about 24 hr. notice we packed up the car and are on our way to Minneapolis.  We are packed in like sardines but managed to even find room for Paul's golf clubs.  Coleson got to say goodbye to his nurses at Phoenix Children's after his treatment today.  Thanks Chris, Allison, Ashley and everyone else for taking such good care of him.  Peyton had her first gymnastics recital after a week of gymnastics camp and I got to say a few quick goodbyes at work today.  We will probably make it to Albuquerque at around midnight.  I didn't get much of a chance to let everyone know that we got the green light.  We will arrive on Sunday and go straight into a week of testing to ensure Coleson is healthy enough to withstand the chemo and transplant.  I'll be posting regularly from here on out as we are in for quite a ride over the next few months.  The sun has just set as we drive eastward, nothing much to look at from here to Albuquerque but highway and 18 wheelers!

Thursday, June 13, 2013

1 Week Til Take Off

Sitting at our second to last ERT at Phoenix Children's.  If the marrow donor's physical goes well tomorrow, we will be starting our travels to Minneapolis after next week's ERT.  We have been busy to say the least preparing for this journey.  We won't get the official "Go" signal until possibly Wednesday next week, which makes it somewhat difficult to arrange all the logistics.  If for some reason something shows up in the donor's physical then it could mean we are delayed until another donor is confirmed (currently one is undergoing first round of tests) or the Dr.s may then opt to use Cord Blood.  He is only matching 5 of 6 chromosones for cord blood whereas the adult marrow donors are matching 8 of 8 so this is still the best option at this time.  

We are still seeing small positive changes in him and are still dealing with small issues with his central line and G-tube.  Just when you solve one problem, another one arises.  This week he is getting blood coming down his central line. This really shouldn't happen unless it is a purposeful blood draw.  So we are having to flush him and change his caps more frequently. 

Last weekend marked a couple milestones for Peyton as well.  She has decided to not wear diapers to bed with somewhat mixed results.  We have had some wet free nights and some not so wet-free nights.  The linens are getting washed frequently!  For now, I am just waking her up in the middle of the night for a potty break.  I'm up with Coleson most nights anyway!

Also, she had her first sleep over.  I was fortunate enough to get to spend a relaxing weekend with my girlfriends last weekend and I found out on Saturday that she spent the night with our neighbors.  Thanks Melissa and Don!  She can't stop talking about it.  She is so grown up!

This next week we will be trying to get all the last minute arrangements made and hopefully getting to see some of our friends before we go.  This will be quite a ride!

Saturday, June 1, 2013

Another week - another worry

Another ERT down, this makes #5.  We continue to see minor improvements with his energy level, his motor skills and even Kim thinks his eyes are clearer (Cornea clouding is common with MPS). 

Last week during his ERT he experienced short episodes of tensing up.  This is a known side effect of the ERT and Nurse Chris stopped his ERT for 15 minutes to let his body settle down and then restarted it.  Everything went well after that.  We also had the surgeon take out the stitches to his Hickman line and it continues to bleed and the surgeon thought it might help to take them out.  Other than that we enjoyed a long weekend with friends at the ranch. 

This week at ERT the same thing occurred and the same protocol followed and it seemed to work again.  This week Peyton went with us to his ERT.  She had fun playing with the toys and I think she enjoyed going to the "Hobstible" with her brother. 

On Friday however a new "complication" occurred.  The area around his G-Tube became swollen and almost looked like the stomach lining was coming out.  I thought Oh no, another ER trip.  After some quick research and a call to my friend Nikki who's daughter has G-Tube, I determined it was granulation tissue, a common occurrence of G-Tubes caused by friction and wetness.   I took him to the pediatrician today who cauterized it and now we know to keep it dry and clean with gauze and polysporin. 

We are 3 weeks away from our travels to MN and the 28 day pre-BMT protocol and countdown.  The original Marrow donor had to back out and permanently withdraw from the registry.  I'm not sure if they "found" something during the blood work but if that is the reason, I'd like to think that Coleson may have possibly saved someone else's life.  We are hoping the backup donor consents soon and that there is nothing wrong with him.  We do know he tested positive for a virus that can be treated with anti-viral meds prior to his donation. 

Otherwise we are trying to pack in as much fun prior to our trip.  This week we rode horses, went to the science center, fed ducks at the park and now Peyton and I are getting ready for a swim play date.   

Oh and Peyton continues to crack us up.  This week it was, "If you don't have bones, you will be a puddle" and when I offered her my corn on the cob, "no, mommy I don't want to eat that, it has your germs"  and then she immediately took a drink from my cup!

Send a letter to your Congress to join the Rare Disease Congressional Caucus

Dear Friends

Please help fight for my son's life.  Rare Diseases do not get the attention or funding that other more common diseases get, therefore the burden is put on parents, friends and families to try to fundraise (Like parents don't have enough on their plates besides putting on fundraising events).

We have a great opportunity to strengthen advocacy for rare diseases on Capitol Hill.  Please take 3 minutes to ask your Members of Congress to join the Rare Disease Caucus.  The Caucus will help bring public and Congressional awareness to the unique needs of the rare disease community – patients, physicians, scientists, and industry, and will create opportunities to address roadblocks in access to and development of crucial treatments.  The Caucus will give a permanent voice to the rare disease community on Capitol Hill.  Working together, we can find solutions that turn hope into treatments.

Click here to send a letter to your Members of Congress!