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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.

Tuesday, January 27, 2015

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 4th 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. 



Thursday, November 13, 2014

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.  

Wednesday, November 5, 2014

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 75th 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:

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.    

Thursday, October 23, 2014

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


Wednesday, October 22, 2014

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.


Monday, October 20, 2014

Be The Match 5K and TV Appearance

As many of you know and most of you probably assumed, my father passed away very peacefully soon after my last blog posting on October 6th.   There is so much more that I want to write about that but my Dad always said, “Life is for the Living” and our life is very busy,  so I will have to find another time to circle back around on that “chapter”….

What is keeping us busy these days is school, birthdays and the Be The Match 5k this Saturday.  First of all, Coleson started pre-school last week.  It was kind of chaotic with us being gone the 2 weeks prior but we managed to get all of the paperwork and IEP done for his first day.  He was a little off the first week on his sleep schedule being on Michigan
time still so the first 2 days he did shed some tears for 20-30 minutes when he was tired. By his 3rd day he only shed tears while dropping off and today was even better.  Drop offs are a bit chaotic and overwhelming so the teacher agreed we could hand him off to an aide who would take him immediately into the classroom so he could start playing  



We also had a joint birthday party for his 3rd and our friend Quinn’s 4th birthday.   We had it at his favorite place, Great Play.  It was amazing to watch him respond to the instructors requests to have the “birthday boys” lead certain activities or to sit in a specific location.  Since part of his developmental needs is in the receptive/responsive communication area, I feel like Great Play is a really good addition to his “therapy” schedule.  He is really thriving.. a far advancement from last year when we were getting admitted back into the hospital for the pleural effusion at this time. 

Lastly, the Be the Match 5k run/walk is this Saturday and Coleson’s Crew is sitting in 3rd place for team fundraising.  I don’t think we’ll reach the number 1 or 2 spot but I am hoping to hold onto 3rd place.  In addition, Be The Match (the bone marrow/cord blood registry organization) is doing a story on Coleson inclusive of a short TV spot on ABC 15.  I’m not sure exactly what time it will air but I think it’s between the 8:00 – 9:00am morning hour on ABC 15, so set your DVRs so you can see us. 

Also, if you are interested in helping us hold on to third place for fundraising, you can donate below:



Or google Coleson's Crew Be The Match.  
(The URL will go to my personal home page which I prefer, google will take you to the team page.)

Monday, October 6, 2014

My First Super Hero

This post is dedicated to the first Super Hero in my life, my Dad.  As I write this, he is fighting his last courageous battle, and soon will raise his white flag.  As with all of my other lost loved ones, Cancer has finally found another unique way to take him.  Three years ago, Bladder Cancer won a battle against my dad, leaving him bladder-less,  but did not win the war.  My dad was wounded but came out victorious. It slowed him down temporarily but he rebounded, changed his life plan and became strong again. Little did we know that Cancer too was re-strategizing.  This time it sent in faster, stronger troops, that could stay undetected for longer, covering more area and had iron clad defense.  They sent in Mesothelioma.  For those of you who are not familiar with Mesothelioma (though you may have seen advertisements on TV for the victims of it), it is a rare form of cancer that is found in the thin lining of the lung, chest and the abdomen and heart, its cause is Asbestos.  It can lay dormant in the body for decades, leaving many of the victims wondering where they might have been exposed to it.  My dad has always been a hard working man and could have been exposed from a variety of sources over his 74 years.  He first passion is farming and he has done so for most of his life.  He held a variety of jobs during his teens and early adult hood including electrical and construction type work.  He spent 34 years as Director of University Services at Michigan State University.  He purchased an old farm in the early 70s and with much love, turned it into our beautiful family home.  The same home where my mom passed from breast cancer 34 years ago and where he too will take his last breath.  I am thankful and I know he is too that he can spend his last days here with all of us as opposed to a hospital.  And I am thankful that we have a chance to say our goodbyes as well.  As so many of his friends have been able to do as well.  The phone has been ringing non-stop and our door barely closes before another friend stops by to deliver food or say their goodbyes.  My dad once joked (modest as he is) that he wasn't sure anyone would come to his funeral so I am glad he knows now just how influential and loved he was.  My dad could be a little rough around the edges, a savvy business man, direct and with little patience but most of all a very hard worker who expected the same of others.  He also was very fair, social and likable guy.  I think this combination of traits earned him a lot of respect.  He was also very smart and wise, wiser than I gave him credit for as a teenager.  I don't think I got away with as much as I thought I did, I think he just picked the times that he thought I needed a little more fatherly direction. In fact some of the stories he shared with us during this past week were some of those times.  One of his favorite stories he has often shared with me was when I was a little girl, perhaps 5 years old, when I said one day, "Daddy, I wish I had a full-time mommy".   While my mother had been sick spending most of my toddler years in the hospital before passing when I had just turned 4, we had several nannies.  How it must have broken his heart to hear me say that.  But it wasn't long after that when my wish came true and he met Aggie. Though they didn't marry until I was 13, she filled that role from the start.  We are all so lucky to have her and I am especially happy that he had 32 wonderful years with her.  I can't and don't want to imagine what it was like for him at the age of 40 left to raise us 3 girls alone.   He always said, "You girls raised me". 
This last battle started for him just before labor day when he went to the ER with chest pains and lack of breath.  He had a Plueral Effusion (fluid around his lung), which they drained over 1 1/2 liters of fluid from only to reveal a mass.  A few days later they took a biopsy of the mass.  A few days later he was released from the hospital but not before seeing the lab diagnosis of the mass as "malignant mesothelioma, sarcomatoid type".  He went home with this information but without being able to talk to an Oncologist.  He had to wait 12 days before seeing his oncologist but in the meantime we had all done some research on Mesothelioma and knew there was not going to be a happy ending but that there may be treatment options including surgery, radiation and chemo.  When he finally got into the Oncologist, they were not certain it was Mesothelioma but rather it could be his bladder cancer had metasticized. Which if this were the case, there was no hope.  They were going to have Mayo take a look at his labs/scans to help confirm the diagnosis.  In the mean time, they had set up an appointment at University of Michigan who were more specialized in Mesothelioma.  That appt was 2 weeks ago Wednesday.  Clarity came with this appt.  They were certain of the diagnosis of Mesothelioma, the rarest, most agressive, most untreatable form... It was too large for surgery or radiation and he wasn't strong enough for chemo.  He was sent home, with the number for hospice care.  
At this point in time he was already weak from his prior hospital stay, but he was finally able to put his mind to rest with the diagnosis and prognosis.  He was at peace with knowing his future and was content with his past.  We didn't know how long he would have but it became clearer every day that it would not be a year.. then it would not be months.. then it would not be weeks and then not even days.  I came home last Tuesday just in time for him to have 2 last days of relatively understandable communication. He was able to talk to all of us girls and be able to say what he wanted to before he went.  The last few days since we have seen him slip away more and more...although did I mention he was stubborn?  He is... and his mind will just not let him go. He still shows us an eye roll or a raised brow when we talk to him.   But it is never easy to watch someone so strong be in pain and not be able to do a whole lot to help.  We have all said our goodbyes and now are just waiting for him to say his.     

This is about all I can write for now.