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:

https://www.youtube.com/watch?v=DJcLoBmFp4o 

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

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. 

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 4^th 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. 

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.  

Bittersweet Anniversary

One year ago, after 138 days in Minneapolis, Coleson was given the green light to come home.  It was a day filled with mixed emotions as we said goodbye to the Doctors that had given him a new/better life and the more than amazing friends we made along the way.  During this time frame I watched my son go from a seemingly healthy boy to being totally dependent on tubes, machines and medicine to keep him alive, to a resilient survivor, 

This year in the same time frame I watched my 74 year old dad go from a seemingly healthy cancer survivor to a courageous face death head-on hero to a peaceful angel.  I’m not sure which was a tougher experience. As a parent, one should never have to watch their child go through what Coleson went through and yet as a child you are never old enough to watch your parent die.   

I don’t know that there is a good way to die, unless you are fortunate enough to have lived a good long life, your days no longer have purpose and you pass away in your sleep.  But my dad did it in about as good a way as you can.  It was unexpected, yes, but not immediate like a car accident or heart attack. He had time to say several goodbyes and take care of many loose ends.  It wasn't drawn out so he had little, if any suffering and we did not have to spend many days watching him digress, listening to his every breath, wondering if today would be “his day”.    Once he was given the prognosis, he took matter into his own hands and I believe was in almost total control up until the very last minute.  He did not want us to go through what he went through with my mother.  He was at peace with his destiny, though of course he wished he could live longer, he wasn’t afraid or mad.  He told me he really will miss not seeing Coleson grow up  and see what he will achieve.  I know that to be true with all of his grandkids, but of course, Coleson is special. I know how hard Coleson’s BMT was on him as well.  You never want to watch your own child and grandchild faced with such challenges.   

He passed very peacefully on Monday, October 6th at around 2:30pm.   He waited until we will all there, making sure Grandma (his mother who is 99) got there so she would be with us when he passed.  She had a chance to say goodbye and give him a kiss as we all had several times throughout the day.  Within 5-10 minutes of us leaving Aggie in the room alone with him giving her time to say her final goodbyes and to tell him that she wanted to spend every last second with him, he took 3 quick and final breaths.  It was quick and peaceful.  It happened to rain that day and there was a bought of thunder just after he passed and of course we took that  as his way of letting us know he was knocking on the heavenly gates.  A rainbow appeared thereafter.  

Of course the following days are really too busy for the immediate family to mourn, making funeral arrangements, writing obituaries, putting together picture boards and a video montage of his life.  As we all went through the years of photos, I couldn’t help to think that we should have been doing this for his 75^th birthday, not his funeral.  I also noticed that my dad rarely took a bad photo.  I wish I could say the same for me.. He had a natural and warm smile and his eyes were bright.  We had a hard time narrowing it down to less than 60.   Here is the video montage John Lewis Video Montage

and the funeral home tribute:

Pray Funeral Home - John Lewis

We had 2 visitations.  I think I already mentioned how he thought no one would show up for his funeral but the line was out the door with friends, family, colleagues, neighbors, church members etc.  What can I say about the funeral itself… I think it’s the most difficult of all the ceremonies, it marks the final goodbye.  A family friend sang a very touching song, The Field Behind the Plow.  www.youtube.com/watch?v=PUM8mXJre1c.  He rode away in an old 1939 Cadillac Hearse, a perfect final ride for him. 

I haven’t had a lot of time to really mourn since but it does find ways to creep in every now and then.  As you know I live a very busy life and we have had several events in the past month including Coleson’s birthday party, the Be the Match race, several friend’s birthday parties, Halloween and preparing for this weekend’s community garage sale and Peyton’s birthday party.  Also tomorrow my friends and Sole Sports are putting on another Ronald McDonald house dinner at Phoenix Children’s hospital.  I think this makes 5 RMH dinner’s this year on behalf of Coleson. 

I want to thank all my friends who sent flowers and plants, cards and gifts, phone calls and texts, and invited me to lunches and dinners.  You are the reason why I am able to continue to face life’s big challenges, you are what keep me going day after day when it life isn’t fair, you are my strength.  Someone asked me how they can help me and it really is little things like these that help me the most.  And just to appreciate life and family and to show compassion for those who are less fortunate.    

Video of our TV Appearance

Well as it goes with TV, we were actually on Sonoran Living at 9:45am.  It was a 5 minute spot.

Coleson was great and I won't comment much on my own appearance other than the start seemed so dramatic that I got teary right away.  It seems that day sitting in the geneticists office was so long ago and the events that took place afterward were so rapid that I forget how devastating it actually was.

http://www.abc15.com/lifestyle/sonoran-living/participate-in-be-the-match-walkrun

I appreciate all the generous donations and support for Coleson's crew.  We are sitting in 4th place as a team at $2085 and I am sitting in 3rd place as an individual at $1005.00.  Friday is the last day to donate.  The money is used to support research and to help offset the medical costs of the uninsured.

Here is my personal link again (this goes against my individual contributor numbers and the team).
Colesons Crew Be The Match Run/Walk

TV Appearance Date

Good News.. thanks to several generous donations yesterday Coleson's Crew is still in 3rd place by a narrow margin for the Be The Match Run/Walk.

Also, It appears I did not provide the date of the TV spot.  It Thursday Oct 23 b/w 8:00am - 9:00am (I suspect in the second half hour but not certain) on ABC 15 in Phoenix.