Part 2...on the buzz in the mito world

I promised to share any info from the research coordinator at Seattle Childrens regarding the study.

I have to say, I am a little surprised at how much hospital and clinic visits are required. We have participated in other study drugs, and didn't have to be at the hospital nearly as much.
It is all interesting none the less...we certainly wouldn't be heading out of town this summer if he got on it any time soon. I have to trust in God with all of this and the timing.

So I am just pasting her response below for those who are interested...

I think about your family often and I hope you are all doing well. 

Currently the study is still requiring the child to be near end of life which they define as 90 days. As you are aware that is a pretty subjective assessment with children with this diagnosis. 

We hope that the end of life requirement will be removed, but at this time we are not sure it will.

The study initially requires a patient to come in and have a whole day of testing at screening.  There are 2 overnight stays at baseline and week 3 and then an appt in the clinic almost weekly

except week 5, 7, 9, 11 and 12.  After week 13 if a patient continues in the study the visit  is every 3 months. 

Hudson is definitely in our thoughts as potential patient if the inclusion criteria change.  You are correct that there are some positive changes for some of the children.

Please feel free to contact me any time to see if there are any updates or changes.  If anything new becomes available from next week’s Mitochondrial Disease Foundation Meeting in Chicago, I will let you know.

The buzz in the mito world

All of us who have a child with mitochondrial disease, found out last week that the drug that is on trial in a study, announced there would be a change in the criteria to qualify for admission into the study.

This is great news...and a step in the right direction....but there is a lot of conflicting information as to what this means for us, and many other mito families.

I emailed locally a few times...
bless Pam's heart, she answered me with what she knows as of right now, in spite of the bazillion other families that are hounding her too. Seattle Children's is one of the hospitals that has this available in study, and she did say she will be sending out a letter or email to all of Saneto's families so everyone is clear.

So I thought I would share the info I know as of now....

Prior to the announcement last week, the 2 major qualifications were

(1) a child has to have a genetic dx for their mitochondrial disease
(2) a child has to be deemed 90 days from death

So...
they lifted the genetic component,  which would qualify Hudson....
although we have no genetic link, we do know has the electron transport chain deficiency.
Thankfully Hudson is not near death, and so this will continue him to not qualify for the study today.

I was told that the 90 days had not changed.

This week there is a conference for the UMDF in Chicago, where Edison will present the latest information.

Because Hudson was in a study for a drug for I.S. way back when, I know the nurse who runs the trials at Children's, and so I put an email in to her today as well, asking if she knew anything different, and the specifics as to how it works.
I do know part of the study requires the child to get off the "mito cocktail"....I am curious to know how much in-patient is required, as well as how often they have to have clinic visits.

If I hear from the nurse who runs these clinical trials I will update with that information.

You can bet Hudson will be in this study if they lift the 90 days from death!
I think that is so ridiculous....you have to wait to the "very end" to be able to try something that could help your child???

Again....confirmation why we keep Hudson in Seattle...SO grateful for Seattle Children's Hospital, everything they have to offer and their awesome doctors!

I would love to see something help my Hudson, and all the other kids who suffer so at the hands of this disease...please keep this in your prayers, that it becomes available to many and helps our babies who live daily with a disease that has no treatments.

The End....

 of scouts....

 Hunter loved his first year in boy scouts....Thursday was the crossover for all the scouts, and the official end to the scout year.

 He crossed from a Webelos to Webelos 2.

the end of school...

Hunter had the most amazing teacher ever! Mr. L is one who I know left a huge impact on Hunter and 3rd grade will be a year forever etched in his memory.
Hunter was awarded the WWJD (what would Jesus do) Faith Award for demonstrating great faith in everyday situations.

Hailey had a wonderful teacher as well....we were blessed to have Mrs. Givens for both kids 1st grade years.
Hailey loved how funny Mrs. Givens is.
Hailey was awarded Outstanding Student in loving/ peace



I am a very proud mommy...
they are mine and they are such amazing kids.
I honestly would rather have my children excel in their character and faith than in any other area.....all other arenas in the school settings are great, but their faith and love for God is what will carry them through life.
This is what this journey is all about.
One of the most important things I try and teach them, is no matter what life brings....and it will bring a many cycles of good and bad....God is sufficient...God will see you through....God is always with you no matter if you are at the depths of despair....don't ever loose sight of that...he will not abandon you....so always press into him and you will survive!
My prayer for them is that with all the pressures of this world....especially at school age years....they will continue to grow in the strong faith they have today.


the end.....

to Hudson's home based therapy. He did qualify for 8 weeks of ESY for the summer months (pt only) but I am not sure we will be here to use them.

the end....

of work for me. Next week is my last week until the fall session starting at the end of September.

We did nail some dates for Vegas....I had to for vacations prescription purposes. So Paul and I came up with the earliest date for leaving (June 25) and the latest date we would head home (Aug 27)....

So I am  getting the ball rolling....finally....and if we do leave then, well... it is only another 2 weeks!



Let summer begin!  






********




On another note....

my husband got me an i-pad for my birthday...and I love it....but I am wondering what are the good apps that you all other i-pad users use? I could use some suggestions with this...just not sure what I should download....any recommendations for Hudson???? I know many use it in the SN arena.

So many similarities ...

I don't know that my brain will ever fully wrap around recently reuniting with our friends who son had mito and was named Hudson Tyler. (see recent post "Gods Perfect Timing")
It still gives me goose bumps...after several emails Wendy and I finally were able to speak on the phone. As we spoke we realized not only did our boys have the same disease, same first and middle name....we also use the same nicknames, and we realized the boys have so many similar characteristics in very specific areas.....like both boys prefer their right side and lean their head and body to the right,both boys are "mushy" piles of love....unable to hold their bodies up, both boys have similar patterns of seizures and consequently vomiting.....

We talked about the meds, the diet, the struggles, the heartache, the joys, the sorrows.....
We shared stories....We cried....we laughed.....

We have literally walked in each others shoes....and although we are in a different place on the path, I truly know she knows what my every day is...our stories of life with our Hudson's are eerily similar.
The one thing I admire so much about these friends of ours, is their ability to make the best out of any situation....the ability to laugh in the midst of the craziness of having a sick child. When they were living here, we always had a good time and laughed... a lot!!!
In talking to Wendy, I realize none of that changed through their journey....they didn't allow this awful disease to rob them of joy...it didn't rob them of being a family unit, it didn't steal their sense of humor, they found their new normal and did what they wanted, including Hudson...
I think that is key in having any type of sick or special needs kid. Life goes
on, you don't worry what others around you think, you carry on...you learn to live...and DO with your special circumstances without apology.









With permission, I am sharing an example of how this wonderful family did just that WITH their Hudson and WITH their humor. A great lesson of love and just how they embraced their special circumstances.


The following is a Father's Eulogy to his son;



"I had never given much thought to writing and delivering a eulogy.  When Reverend Lee mentioned it after Hudson passed away, I thought what better way to honor him then to share a story.  As you look around at how crowded the chapel is, you will see those who were touched by Hudson’s life.
 
As I sat down to write this, thoughts of giving and receiving or having and sharing crossed my mind.  Hudson did each of these in his own way.  If any of you read the feature article in Tuesday’s edition of the Atlanta Journal Constitution, I said either you Do or you Don’t when people would say they don’t know how Wendy, Jackson and I handle Hudson’s disease and medical needs.  As I told the reporter, it’s always been unequivocally DO for us. 
 
I would like to share a story that definitely falls in the DO category.  In 2008, Jackson wanted to go to Washington DC for our summer vacation.  Hudson was 2 and a half at the time and recently diagnosed with Mitochondrial Disease.  As you can imagine, there was a lot of planning to fly from here to there. 
 
If you’ve ever been to DC, you know there’s a lot to see and we crammed in as much as we could in the 5 days we were there.  Each place was a gamble as Hudson was very unpredictable with seizures which at the time caused him to vomit.  To say he left his mark in DC would be an understatement.  Yes, this is a story about vomit.
 
We went to Arlington National cemetery and visited the grave-site of JFK.  As we approached the eternal flame, sure enough, Hudson caught us off guard, having a seizure causing him to throw up.  Normally, we traveled with a “just in case” cup just in case Hudson threw up, but for some reason, we left the hotel without one.   As we moved Hudson away from the eternal flame to a discreet area to clean him up, I quipped to Wendy “Hudson can’t stomach being so close to a democrat”.  After that incident, we made sure we always had a cup.  
 
A co-worker of mine arranged tours for us of the White House, the Pentagon, the US Capitol, Library of Congress and the National Archives.  After the incident at Arlington, we were a bit nervous.  Once again, Huddy didn’t let us down.  As we were waiting to enter the National Archives, Hudson had a seizure and threw up.  We were ready this time.  100% of it was successfully contained in a plastic Solo cup.  Security at each of the national buildings was extremely tight with guards, metal detectors and x-ray machines.  As we approached the entrance the officer asked me what was in the cup.  I responded matter of factly, “it’s vomit”.  He told me I couldn’t bring the cup in.  I explained to him Hudson had seizures and sometimes this happened and since this was my only cup, the last thing I wanted was for him to throw up on a national document.  The guard agreed with me and declined my offer to put the cup through the x-ray machine.
 
All in all, this was one of the best vacations we ever took.  No matter what life has in store for us, we always have a choice…Do or Don’t.  Hudson taught us you get more when you DO.

Sweet Hudson! You brought so much joy to our hearts!"