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.

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.  
 

Monday, September 1, 2014

Lots of "Firsts"

First of all, notice I did not prefix this post title with the days post BMT.  Now that we have surpassed the 1 year mark, it's time to stop living by the number of days post BMT.  It's also time that my baby becomes a little boy and so we've done several little boy things.  First we went to the dentist.  Peyton loved the X-rays of her teeth...she is fascinated with bones...and despite being a little nervous actually enjoyed getting her teeth cleaned.  I think she liked playing with the water gun and suction more than anything.  Coleson did not enjoy the X-rays but we managed to get 1 of his front teeth which revealed a cavity behind his front tooth.  The Dentist said he would not have caught it without the X-ray but it needs to be pulled.  It's either that or a baby root canal which leaves the possibility of infection which we need to avoid at all costs... in this case a missing tooth until his adult one grows in in about 3-4 years. 

 


Then it was his first official hair cut.  The only other hair cut he's had was post-BMT when we had to shave it.  There were lots of tears during that one..both his and mine... but this time it was a much better experience for both of us.  He got to sit in a "car" salon chair and watch a movie.  He looks so handsome with his big boy haircut and for those of you worried that his curls would be forever gone... they're not.  He's still got his curls in the front and on top and already his hair is starting to show curl in the back. 

He also started Gymnastics.  A parent and tot class so that I can ensure he doesn't do anything that would compromise his back and neck.  But those of you who know me, know that I want to encourage as much gross motor skill development as possible, even turning my own house into a mini gym.  I am struggling to find a pediatric developmental physical therapy place that my insurance covers which is within a reasonable distance as we spend a lot of time in the car going to appts.  I have found a rehab/physical therapy place that my neighbor Teresa works at which is not necessarily for pediatric development skills but will give him some stretches. 

Lastly he got a big boy room inclusive of a bunk bed and new wall decals of Cars. His sheets are Thomas the Train and Cars.  I think Peyton is equally as excited to play on his new bed.  Peyton got the queen bed that was in Coleson's room before.  She's not sure if she likes the bigger bed as she really like her full bed. 

He has an allergy apt, a new pediatrician, and a cardiologist apt and a dental surgeon coming up in the next couple weeks so we can determine which surgeries (PDA in his heart, tooth extraction) he needs and when.  Also he will start to get his newborn immunizations. 

Paul and I also had our first get away to Sedona for our anniversary.  It was a quick 24 hrs. but we packed as much fun, exercise and relaxation as we could.  We had an amazing room view and some good hikes and pool/hot tub time.  It sure beats last year's anniversary in the hospital. 


We are getting ready for the Be The Match fundraiser on September 27th and the run on October 25th.  They are going to do an article on Coleson.  More details to come in a separate post.

Lastly the Ronald McDonald House's dog Jerry passed away from Cancer.  He spread so much joy to the families at the RMH and ironically helped heal many cancer patients.  It's another sad loss to those of us who knew him. 

As always it's been very busy 'round here.  I may not post as often as I'd like to but being the mother of a very special boy and girl too, while working full time,  is more challenging