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, 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

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.