Day 15 In Boston - A Note Written By A Good Friend Who Came To Boston To Help And Witnessed The Intensity First Hand

Erin Solari and Allen M. Tonkin aka "III" September 1982 @ the "La Jolla Beach & Tennis Club".

Erin Solari: Just back from Boston and I know Donnie Brainard will send an update when he can but the recovery and healing process is moment to moment and day to day and sometimes there is just no way to describe that day. And on top of that, being at the hospital around the clock just wears one out so badly that there is no energy for anything else. It is not my place to forward another's info but I will say that by observation the staff at Boston Children's Hospital are some of the best I have seen and all are working together to help India in every way possible.

Also Donnie gets almost zero breaks because he is the only one sometimes who can assess what India is asking for and often the moment he tries to step out briefly to quickly eat or grab clothes from the hotel... He will be instantly called back to the hospital. In a perfect world Donnie would have more support there with him and I know my cousin Allen is there now trying to help but this is a long process and thus if there are other family or friends out there who are able to provide support there or even at home that would surely help. I also realized that while he is there for these months he is not working and that can surely generate its own stresses and challenges. Plus he is away from his wife and other 3 children which I imagine is hard as well. Again this is just my observation and thoughts from my short time there and looking at all the parts of life affected by this delicate situation and trying time for all his family. This after many challenging years before this - I pray for all involved and hope that the clouds of such strain and grimness may clear for all.

I also want to acknowledge all the family members & friends who HAVE already been supporting and helping for many years now. My golly - I admire all parents and all it takes to do it well and how much a parent gives of themselves and then with a disabled child or more than one I can't even fathom how the parents do it so my deepest respect to all the parents and families in this position and the super abundance of love, persistence and patience they all have to muster daily. — with Erin Solari at Boston Children's Hospital.

As a Post Script, Erin Solari is the girl who saved my life on October 3, 1982: http://moomock.blogspot.com/2010/05/global-grande.html

Day 12 In Boston - Post Surgery

India was experiencing a lot of pain this morning.  We increased her pain meds and it made a huge difference.

Part of what is hurting her is the need to regularly shift India to avoid bed sores.

Day 11 In Boston - Traction

It's been another very long night. India is having quite a bit of pain.  Plus her anxiety level is through the roof.  India likes to sleep on her side but can't because of her traction. This frustrates her and she starts to cry, asking me to help. India has the beginning of a bed sore so she has to be constantly shifted which hurts. 

Yesterday evening, she spiked a fever and had to have ice packs placed around her body. Daddy was a little worried for awhile there. No fever since thank God.

Today, I'm going to try to feed her some sushi with extra wasabi (her favorite) followed by a milk shake and daddy/India screening of Willy Wonka.

Day 9 In Boston - Out Of Surgery

India is out of surgery.

It was a marathon session that began at 6:00 am and ended 12 hours later. The doctor said that her femurs were so eroded that there was absolutely no cartilage left. He said it was pure bone on bone advanced arthritis and her pain had to have been excruciating. They didn't have to do a transfusion, her blood loss was minimal. 

India is in major traction and will be for weeks. They've placed large screws into her knees as the connection point for the traction; very intense looking.

Her pain is managed right now and she is resting.

Thank you all for your support, I'm grateful beyond words.

Day 9 In Boston - Still In Surgery

India is still in surgery.  The doctors are now working on her right hip.  We won't know more until 4:30 or 5:00. 

Day 9 In Boston - I DON'T WANT TO WAKE HER UP....

It's time, I need to wake India up so we can go to the hospital. She is going to be frightened and plead with me to let her go to school today to be with her boyfriend Daniel instead.

In a matter of hours I'll hold her as she asks for me to help her as the IV lines are painfully placed in her fragile veins by a group of strangers with blue masks looking down on her. 

My child will yet again be terrified and looking to me to rescue her. India will tightly hold onto my hand saying "daddy help, please".

I've not slept much tonight as I've been anticipating what is about to happen.

In fact, I sit here not able to wake her with my usual smile. I know the dangerous procedure she faces and the pain she will experience.

I want to just cradle her and make it ok.

Nobody deserves this.

Day 8 In Boston - LESS THAN 24 HOURS

Tomorrow is the day…

  

India and I have to be at Harvard Boston Children's Hospital tomorrow at 5:00 am Monday morning; in almost 24 hours.

India has no hip sockets and her femurs are a disaster.  She will be receiving a partial McHale procedure with hip shunts. This will get rid of her arthritic hips. It's an intense and dangerous surgery.

India has had a low dose radiation treatment last week and will again tomorrow at the Dana-Farber Cancer Institute to help eliminate unwanted bone growth post surgery. 

India's surgery will take up to 8 hours. To reduce surgery time because of her medically fragile state, 2 surgeons will be operating; one on each hip. 

The Physicians will be utilizing a process called "Cell Saver" where they recycle India's blood that she loses to reduce risk to my child. 

Post surgery, India will be in skeletal traction for 2 weeks. She will then be sent to a rehab hospital here in Boston for several more weeks.

India is scared and so am I. She keeps asking if she can go to school Monday to see her boyfriend Daniel.

We still need help…

Day 6 In Boston - Pushed It A Little Too Hard

Allen  M. "Moose-Knuckle" Tonkin AKA "III"

So my good friend Allen Tonkin "III" became very ill this week  after flying from Alaska to Boston to help me with India. He is now in the Beth Israel Medical Center for an undetermined timeframe.

Allen was supposed to fly back to Anchorage, Alaska last Friday to host a fundraiser for his film "An Adaptive Backcountry Project".  This after helping me for the past week with India here in Boston.

Allen is in GREAT hands and has a cute nurse which I'm sure he doesn't mind.  

The view from his room looks right down onto our hotel and Harvard Boston Children's Hospital. I do believe I can "moon" him from my hotel room (yes I've tried).

Allen M. Tonkin "III" is stuck here in Boston with India and myself for awhile and I'm "OK" with it. Not only does he get to have the best medical care in the United States but he also gets to continue to bring big smiles to India as he did the other night (long story, involves Allen almost throwing up and India laughing until she turned blue).

I'm grateful beyond words for Allen and all the other people who have stepped up to help us during this painful time.

db

Day 6 In Boston - Update

This week after a very long trip, Indias body not being kind to her and not enough rest for either of us; we've been given no break - except from an old pal (http://moomock.blogspot.com/2014/01/a-friend-indeed.html).

We also happened to be in Boston during a very, very cold weather system where the temperature in this area hit below "zero".

I've had a lot of paperwork to fill out, enough to level a forest. And dozens of calls, texts, im's and emails to respond to that I literally can't find the time for.

To make matters worse, the Dementor has shown absolutely no support in anyway. And in fact, has been on the attack and will NOT stop.  

If you recall, the Dementor attempted to block India's last procedure here at Harvard Boston Children's Hospital, a procedure that changed India's life in the most beautiful ways. 

I realized as I wrote this post that the Dementor has yet to ask how India is doing. I guess Dementors are just terrible narcissists without concern. 

("Dementors are among the foulest creatures that walk this earth. They infest the darkest, filthiest places, they glory in decay and despair, they drain peace, hope, and happiness out of the air around them... Get too near a Dementor and every good feeling, every happy memory will be sucked out of you. If it can, the Dementor will feed on you long enough to reduce you to something like itself...soulless and evil. You will be left with nothing but the worst experiences of your life.") —Remus Lupin to Harry Potter^[src]

So to move on, in the past few days, India has had blood tests, physical exams, detailed questions - over and over. India has also endured oncology radiation at the "Dana Farber Cancer Institute" (http://www.dana-farber.org/mobile/default.aspx) to ensure no rouge bone growths after surgery.

I’m worried about the upcoming surgery but also very hopeful. If everything turns out the way the doctors say it will, India will be pretty comfortable after she heals from this procedure.

And the goal of the medical team is for India to be able to have the ability to "dance", "ski" and enjoy life again.

Vikki and I being India's parents who get up every single morning when the sun rises to stretch her. And do the same after the day is done and India is ready for bed proudly shoulder this honor.

We find ourselves worn out in every way imaginable; beaten down if you may. But we would not for a moment do anything other than what must be done.  These are our shoes and we wear them with love and dedication.

India, Marion, Nikki, Abbie, Gonad the Cat and Carwash the Pigeon are in good hands and loved.

And Monday morning, India is going to receive the best help possible in the world for her condition. 

"Donnie"

P.S. We are still in serious need.  This ranges from moral and spiritual support to financial assistance.  

Day 4 In Boston - We Know The Path We Are Taking.

So we had to get up incredibly early this morning to get to India's pre-surgery appointments; less than zero outside.

Very long day with amazing and dedicated people.

India was a champ beyond words.

Harvard Boston Children's Orthopedic Surgeons today have made well thought out recommendations that I’m going with.

I’m scared but also very hopeful that. everything turns out the way the doctors say it will.

I’m planning on India and me resting in the next few days so we can be prepared for Monday.

Donnie.

Day 2 In Boston - A Day Of Rest

After a long trip yesterday, we spent today resting for another long day with the doctors tomorrow.

My old friend III aka Allen Tonkin is with us.  He flew in from Alaska and arrived early this morning.

Day 1 To Boston - So I can't sleep.... I don't think India can either.

So I can't sleep.... I don't think India can either. I keep hearing her giggling in her bedroom.

I don’t know for sure what she's thinking but I'm pretty sure India’s excited about "Partying Like a Rock Star" on the airplane; we're going to trash the damn thing while we drink Cokes and eat ice cream with impunity.

Maybe India’s giggling because she’s thinking about Daddy and India hanging in a hotel, watching pay per view and eating room service like Eloise does!

And she just might be excited about having the hurt taken away. She knows they did it before and the result among many was my child being so fortunate to fall in love with Daniel.

Daddy is quite nervous however and I’d give my life for any of my children to not experience what India has.

So I’m going to cook some Juevos Rancheros and await my oldNavy friend to come and take us to the airport at 4:45 am.

Goodnight Moon….

- Day 1 To Boston - An Old Pal

It’s Saturday evening January 18, 2014.  India and I leave in a few hours for her surgery in Boston, Massachusetts.  We will be gone for up to a month and to say I’m worried would be the understatement of the century. 

The journey to get her to Harvard Boston Children’s Hospital has been absolutely brutal in so many ways; even as recent as tonight.

But ironically enough, India and I will be getting up at 4:00 am tomorrow morning as I used to in the Navy. And of all people, an old Navy friend from the Aircraft Carrier USS Ranger CV-61 that we served on will be taking me and India to the airport at 4:45 am.

I’ve not seen him in God knows how long and he’s going to meet me at my house before the sun rises to give us a lift to the airport.

For me, here is what is really neat about this story. 

One of the last times I talked to my Navy buddy was in the Persian Gulf in 1989. We were in a “Machine Room” where he had duty; horrible duty. This room was an awful place to have to spend hours upon hours, staring at engines humming, no windows, wearing hearing protection from the deafening sound and enduring 100+ degree heat.

We’d sit in this steel room and just talk (shout) about what we were going to do when we got out of the Navy.  We had fantastic ideas and our homes were going to be surrounded by white picket fences.

The day my pal left the ship, he gave me a book that I still have to this day and display proudly in my dining room.

My friend is now the Principal of “La Cueva High School” in Albuquerque, New Mexico. It’s one of the top rated, if not the #1 in the state of New Mexico.

Thank you Todd.

P.S. Albuquerque High Bulldogs Rule!

- Day 1 To Boston - A Friend Indeed

I have a pal who is the "shit".  When we were younger, life was different for both of us. If you'd asked each of us what we'd thought we'd be doing in 2014, I can guarantee that neither of us would have painted a picture of what our lives are today.

My buddy was injured in a brutal parachuting accident and is now wheelchair bound. Life for him has been unimaginable.  However he's come through it all like a champ and inspires me in ways I'll never be able to convey.

Well, as I've been saying recently, I've realized that "family" has nothing to do with "blood"; it's about "love". It's been a bitter sweet lesson at 45 years of age and in my situation, harsh.

So my good friend who lives in Alaska contacted me tonight and after the conversation he left me speechless.  He is going to fly literally across the United States of America, from Alaska to Massachusetts to spend a week with me and India in Boston. You can imagine how difficult this is for him to get from his home to Anchorage, then all the way to Boston with the stops in between solo in his wheelchair.

in·teg·ri·ty

inˈtegritē/

noun

1. 1.

   the quality of being honest and having strong moral principles; moral uprightness.

   "he is known to be a man of integrity"

   synonyms:

   honesty, probity, rectitude, honor, good character, principle(s), ethics,morals, righteousness, morality, virtue, decency, fairness,scrupulousness, sincerity, truthfulness, trustworthiness "I never doubted his integrity"

in·spir·ing

inˈspīriNG/

adjective

1. 1.

   having the effect of inspiring someone.

   "he was an inspiring teacher"

This is my friend Allen M. Tonkin III

We call him "3"

(And I'm still taller than him!)

So many beautiful people have stepped forward to help; family; life is beautiful.

Any help is greatly appreciated

- Day 2 To Boston - INDIA AND I HAVE DECIDED THAT THIS IS OUR THEME SONG FOR THIS WEEKEND!

“I’M SHIPPING UP TO BOSTON”

http://youtu.be/x-64CaD8GXw