December 30, 2011

On this day, Hudson started Epi-743....

that evening, I found out my husband passed away.

Please keep the kids and I in your prayers.

Buying some time...

After calling the mito nurse yesterday, and discussing Hudson's state of being, we decided I needed to reschedule his MRI/MRS.
The bottom line is Hudson is really, really loaded with excessive mucous coming from both his mouth and nose.....STILL....almost 2 weeks later!!!!! Typical for Hudson :(

He has a good cough, but unless I'm right there with the suction machine to catch it when he coughs,he ends up swallowing it which possibly/likely he aspirates and then he still sound gurgly, coarse and works harder to breathe.
Our appointment was set for the 27th at 7:30a.m. Being we live a good 45 minutes from the hospital, and all it entails to get there timely, if he is having these respiratory issues we would likely be sent home as they can't put him under anesthesia like this.

Unfortunately Dr. S and the research study nurse are unavailable, so Pam and I had to make this decision. I do remember the research nurse telling me the MRI was fine to be done after the screening for Epi-743, which is on the 30th. So I tried to get the first week of January... because Dr. S has a specific machine that has to be used, the 9th was the earliest. I'm thinking it should be fine on our timeline (hoping)
Because I never got any date as to when we would start Epi-743 after the screening was complete.

(Clarissa... Do you have a start date?)

So.....time is our friend with mr. gunky boy. Thankfully...no fever, no tummy problems, he's sleeping and wakeful...no unusual behavior...
His little body just can't fight a cold like it should. I'm pretty sure he got this from me....the beginning of Dec. I was pretty sick... horrible cough that hurt my chest followed by lots of mucous... It took me 2 weeks to feel myself again. For Hudson I'm sure I will have to double that number.... Poor kiddo, as if he doesn't go through enough without being sick.

2weeks ago, when Hudson came down with this, we had our appointment and holiday tradition of seeing Santa at Nordstroms in Seattle, walk around, go to dinner. Hudson was running a fever that day and so I left him with my mom and decided to uphold tradition with the other 2. It was so hard on my heart to not have him with us but I knew I had to do what was best for him and consider my other two.
I vowed once he was better I'd take all 3 to get all 3 H's with Santa. Obviously the clock is ticking with Christmas days away.... So this week...

I got all 3 in their Christmas outfits..check!
Hair done....check!
Towel for secretions...check!
Suction machine....check!

And off we went for round two of Santa Clause. I went to our local Nordstrom, which does not have the special accommodations like downtown Seattle. (the Seattle set up is waaay nicer!) thankfully there was no line until after we got our pics and Santa was willing to see our special family....
And I got my picture. Might sound corny but I was teary eyed after it was all said and done...Hunter even noticed and mentioned how emotional I was...

I guess my reality is this...
I don't know how many Christmas's Hudson will have... I don't want a Christmas to go by that all three are not together for our traditions... I want Hunter and Hailey to have the memories of holidays with their baby brother...I need him... and I refuse to let this disease rob us of these memories.

So this year we will have 2 santa pics for 2011....
and I'm sure we will remember this was the year Hudson was sick but not too sick to let it stop tradition and one determined mom

A few more....

Twas the week after Christmas....(and some dear friends)

and all through the house not a creature was stirring not even a mouse...
Why, you may ask?
(I will spare you... my rhyme stops here :)

Because we will all be at Seattle Children's preparing for the start of a new year, new hopes....

Dates are set and I need some serious prayer.
Dr. S wants Hudson to have an MRI/MRS as part of the screening process for Epi-743. His appointment is set for December 27, at 7:30 a.m. He will be under anesthesia, so I need prayer re. that. Hudson has always come out of anesthesia pretty easy, but it still makes me nervous.
His actual day of screening and signing consents to start the trial will be on December 30, at 12 p.m.
This will include a physical exam,electrocardiogram,chest Xray and blood work.
Hudson MUST be at his baseline for both these dates. If not, he won't be able to go under for the MRI, and we need normal results with these labs and chest Xray in order to qualify.
Normally I wouldn't be too worried
BUT....

Hudson is sick.

He started running a fever Saturday.
We are back to "super gunky, snotty boy" slime all over his neck, pillow, face...I was up half the night suctioning and wiping away the goop.
God nudged me...I got him into the pediatrician yesterday and told him what we have upcoming. Hudson started Augmentin last night and has a 20 day rx. So this will get him covered through the end of the month and screenings.
So many prayer requests I know...
but here it is in the short of what you can be praying for.....

* This junk Hudson is battling clears up with antibiotics

* Hudson is at baseline before his MRI date...

*MRI and sedation go smoothly ... Praying no major changes with his brain indicating progression of disease.

* All screening tests look normal and Hudson qualifies for start date in January

* Hunter and Hailey....a lot will be consuming me with Hudson... I need patience and grace, so they don't feel pushed to the side, or less important.

* Results....would love to see positive results for my little buddy with the start of this.




As I write this blog post, so many of our mito kids/families are suffering.

I have stopped blogging throughout this post,several times, to hear other prayer requests of our mito friends...So many are suffering this morning.
I sit here and saturate each one of them in prayer, tears stream as I pray for these mightiest little soldiers of God, fighting a battle that is so unfair... And their amazing parents... The strength and courage as they prepare for what's next, with a pit in their stomachs....

Tricia's boy Calvin... They need answers as they see Dr S today... Increased seizures, regression since surgery, vision problems, labs, unexplainable pain

Jessica's little boy Brent who is so complicated and so sick, and all the bad news they have been receiving this morning as well as her other children being sick too. It is unimaginable!

Heidi and her darling boy Jack... As they head today to yet another appointment at Children's for GI issues.

Krissy and her fighter Talon...
They have been hospitalized for months, and this little boy is such a fighter.... Seizures, breathing issues, coma... although he has improved they made the difficult decision to have a trach placed.....now they begin yet a new normal and learn yet another way they must care for their son.

Jennifer and her little princess Katelyn....who suffers so similarly from Mito like Hudson.

I wish I could link all these families for more info, but I am restricted on my iPad, and am not capable.
The link below is a short video about Katelyn and her Mito.... Our doctor, Dr. Saneto is in it as well. It is near and dear to my heart as I got to meet this family this summer at the guilds mito picnic. Katelyn presents similar to Hudson... Every time I watch this I cry.
This family is so amazing and I so admire there strength together.

So PLEASE, copy and paste this link in your browser... You will see what I mean.



http://www.youtube.com/embed/Xe2VoxodGws

The glory of defeat

I have been on such a whirlwind of emotions over the last week...the first half I felt utterly defeated by several situations...
Which made me feel as if I was swept off my feet (not in a good way)pulling the ground up from under me.

Having Hudson, requires a lot of fight...
I have to be his voice, his strength, his advocate...I am happy to take it all on and more... Because he deserves the very, very best.

For the past several months I have been taking the steps to get the state to look at Hudson, not at our assets, or income... But to look at my son...

My son, who is terminally ill, who requires 24 hour care, who is completely dependent, and helpless.

With love and gratitude, I care for Hudson... Alone... single parenting a catastrophically ill child and 2 other very healthy children, who have the more typical needs and demands...it's a full time jobx3.
But as those who care for their own "Hudson" knows, no amount of money can afford all the needs required to give them all they need.
This is why there is something called a waiver... There are several levels on a waiver... My prayer was once Ms.DDD representative came out and saw Hudson, saw his needs, heard about his epilepsy and mitochondrial disease, heard about why and how I single parent all 3 kids... well...that it would be a no-brainer... and I had hoped when Ms. DDD had tears well up in her eyes as I explained this life I lead...I could see she was not just a state rep, but a mom herself showing me a bit of humanity, and compassion.
So imagine how I felt on Tuesday when I opened the letter, a letter that I have been looking for daily to be in my mailbox since our evaluation, and at the top I read "DENIAL OF WAIVER"

Couldn't believe my eyes... How could Hudson be denied? All I was really in hopes for, was supplemental insurance and respite care. Ms. DDD even asked me in our eval. how many hours a week of respite did I need. Feeling appreciative if I got respite, I had told her I would be grateful for whatever the state would give me.... I have had no help in 4 years and anything would be appreciated.

After reading further, it appears the denial was not based off of Hudson but the fact that the state is not accepting new waivers and funding is lacking...of course!!! So we are put in a database...probably forever will we sit in a database.

I think what I despise the most is how the "system" works in general ......
Your a hard working family, trying to do the very best for your kids... Providing a safe, loving home, holding jobs, paying bills.... DENIED any help, almost feeling like a punishment, for being a functional, responsible member of society.
On the flip side I can think of many scenarios... an addict in recovery, can't keep a job,lazy,don't own a thing, crooks who know how to"work" the system, and voila...the government steps in and provides...
Of course I am generalizing...some states are better than others with providing to families like mine... WA happens to be one of the worst!
Just my luck.

Feeling bad, but didn't know what was to come on Wednesday of last week.
I had no idea I would be overwhelmed with sadness beyond belief.
You see, I decided to make a phone call to our neuro's nurse. I haven't touched base with them in some time and I was curious to find out where they were with the Epi-743 timeline.

After giving the Hudson update, I asked if there was any new news. As a matter of fact there was... they had enrolled a patient into the study, their first one! So many questions whirled through my head.... When did they start this? Why wasn't I contacted? When do WE start?
I wasn't ready to hear the fine details the way they were to play out... I didn't know I would need to brace myself for bad news in such good news. The study drug is now available at Seattle Children's BUT they will only be allowed to enroll 5 patients.
That's right...FIVE... and there are over 100 mito patients under Dr. S.

I had assumed this whole time that I have been pursuing this, that once Epi-743 called Seattle Children's home.... Hudson would be in.
I now knew with only 5 patients having this opportunity our chances were now much slimmer.
I mentioned going to Stanford if we would not get in, but wasn't given much encouragement...I was also reminded of the fact that 2 children that were sent there had passed away while on this study....
I got off the phone and just cried.
I cried most of the day, with the exception of being at work.
The moment I got home...and saw my Hudson lying on the couch, I literally fell to my knees sobbing...praying...sobbing...
I felt utterly defeated in that moment.
What I now realize, which I didn't so much then, was the glory in that moment... Being defeated....feeling lost and helpless...relinquishing the fight...in that moment the only (and greatest) thing I did was falling to my knees, praying, giving it to God...who knows my heart, and knows how all of this would work out. I realize now, God can take our pain and suffering and turn it into victories... It may not happen instantly or the way we envision, but feeling defeated made me ultimately surrender to Him, and trust in His provision.

That night I journaled my feelings... Here is a portion...

"Today has been such a difficult day for me...
After hearing there were only to be 5 children allowed on Epi-743, I had a pit in my stomach.
I have been crying a lot today.
I realize this is not a cure by any means. I realize each child will react differently and there is know way of knowing who will benefit most from this drug. I realize this must be grueling for Dr. S to have the say as to who,out of all his patients, gets to fill 5 slots.
I realize this drug may or may not change the quality of Hudson's life.

What I also know is....that Hudson is so severely impacted by mito. His quality of life is no life at all, every day is a struggle to live. My 4 year old is an infant and is stuck in a body that doesn't work for him. It is absolutely devastating ....and I know Dr.S sees this daily in clinic, as he treats his patients.

Today I was literally on my knees praying over Hudson....praying he would have a chance, praying he might fill one of the 4 spots left, praying and pleading to God to hear and answer my prayer, praying God would lead Dr. S to call on Hudson to have a chance.

If begging would help I would...I would do anything to give Hudson a chance to have something help him, because so far....NOTHING has worked.
I am Hudson's voice, and as that voice I can only advocate and fight for him."









The next day I was still sad but a little better. I realized there was nothing I could do to make Hudson be included as one of the 5...I knew God was there, in my grief.

Plugging through my day with a heavy heart, I got an email from a sweet friend of ours... announcing they got "the call" I was happy for them... I would rather know and be able to follow someone on trial than know nothing at all... I also in the back of my mind couldn't help but think "only 3 spots left"
Minutes after getting my friends email, I got another as I was walking in the house from a busy day...
It was from the research coordinator at children's. I skimmed through the email... She was following up on a call she had made...I looked at my phone and it said "New Voice Mail"....
Shaking, I picked the phone up to listen to the message...
Tears start streaming from my eyes...uncontrollable tears... Hunter and Hailey are staring at me as I stand in disbelief... Phone to my ear....sobbing...

Hudson was chosen to be on the Epi-743... She was emailing the consent, and I was to let her know if I was interested.

Unbelievable....pinch me... Is this real?....
JOY!!!

I have absolutely NO hesitation in participating. We have nothing to loose and everything to gain...
Sign Hudson up!!!!!

I will say, I have had guilty feelings once we were to be included...almost like "survivors guilt" because I know many families that would love this opportunity, and knowing how it felt just the day before... I just feel and know that pain... It is raw and unsettling. All I know and pray for, is that besides Hudsons personal benefit, others may benefit down the road as he is a "ginny pig" as need be for this to have the possibility of being marketed as the first treatment ever for mito.

I know too, from the research coordinator, that they will keep requesting to admit more than 5.

This week I talked to the study coordinator live and got some detailed info on what is to come.
Quick summary...
It is a 12-14 week "emergency" trial (this is not considered a clinical trial)
At the end of December he will go through the screening process... Tests, blood work, etc.
He will have to be off his "mito cocktail" but will remain on his anti epileptic meds.
Come January, we start the drug.
We will come in once a week to have labs drawn,etc.

I will end by saying....

Last Thursday was a wonderful night...I cried alot, but thankfully tears of great joy.
My mom got a small cake, a good bottle of wine, and we had a mini celebration with all 3 H's.

Earlier that day, before the incredible news, I thought about Christmas and Hudson...(more sadness)
That night he got the best Christmas present ever... and so did I...
what timing...a joyful season indeed!