Zach McCulloch Update - 12/18/2009 - No one should have to go through this!

Zachary is in much pain right this minute due to the tumor on his carotid artery. Paula just applied a fentanyl patch and hopefully this will work soon..

His base line for heart rate and breathing has changed and is now lower. This is all part of the body and mind and the change in his deteriorating condition. These days are the most blessed of all as we still have the 6 of us together. Zach is hoping he can make it into the New Year!!!

Helpless does not adequately describe the feeling we have right now.

Please pray for a miracle and if this is not forthcoming please pray that Zachary can go as peacefully as possible. (God's grace one way or the other).

Ashton Miller is going to Paris! What a wonderful gift so many people have given.

Please pray for so many others as well....

Love,
Kevin, Paula, James, Zachary,Gage and Sierra

Zach McCulloch Update - 12/9/2009 - Ashton Miller

Hi Everyone,

Zach wanted to travel but got too sick so if you could check out the site below and perhaps send 1 dollar, 5 dollars or 10 dollars you can help a lovely family try and make a trip of a lifetime. Believe me there is much comfort in any memories that can be made....

Please if you can reach out and help Ashton Miller.

Ashton Miller Site at Caringbridge.org

She too has Rhabdomyosa​rcoma.

Here is the donation site:

Ashton's Angels

Thank You!

Zach McCulloch Update - 12/6/2009 - Sound of Laughter

Right now I am listening to the sound of laughter coming from our home. We have so much to be thankful for...

Zachary is still with us and has done a more than admirable job visiting with his Aunts and Uncles, cousins and friends.

We have such loving neighbors as well where we live. They provided us with a feast for this whole weekend and beyond!! Thank You Karen and Kathleen and of course your families. We appreciate your love and support and for always thinking about us.

Thanks so much to my sisters Heather and Robin, my brother Stan and my brother Don. My brother Don had a massive stroke last Friday November 27th, he is not expected to make it but he is here with us in spirit. He would have loved to have been here with us but is recovering in Michigan to the best of his ability but has decided not to take additional measures to prolong his life. Unfortunately he has lost all of the everyday abilities that we take for granted that give us quality in our day to day life.

Please pray for my brother Don and his wife and 3 sons (miracles and hope are out there....)

Meaningful conversations have been had with God and with each other. Love is an amazing thing…..
Love,
Kevin, Paula, James, Zachary, Gage and Sierra (“A Daughter Is... ...your greatest source of pride and your greatest hope for the future... The happiest moment of your life was the day she was introduced to the world.”)

Zach McCulloch Update - 11/24/2009 - Love will never die.....

Love will never die.....

I was giving Zachary a hug and a kiss goodnight yesterday and there was the look. The same look he gave me when he was 6 and came running up to me with one of his broken Power Ranger toys. The, I know my Daddy can fix this he can fix anything look. My heart just sunk, how do I fix what is broken this time? I cannot purchase a new one, I cannot turn back the hands of time, and I cannot go back to school and major in pediatric oncology. All I can do is be with him and our family during this very rough time. I know that in Zach’s heart the toughest part is leaving all of us behind. His mother, who is the very definition of the word MOM and has been an angel for all of us, brothers and a sister that have had their own childhoods impacted to an extent that has yet to fully reveal itself.

Zach is so frail right now and we continue to do nothing curative just pain and symptom management. Our love will transcend this universe and any others that have yet to be discovered. Yet we still are hanging on that the heavenly father will grant us his grace and give us a miracle that brings Zach from the brink of dying and stops this madness.

Today is a good day because no matter how much this spiral continues, we still are able to look into Zachary’s most handsome face and beautiful blue eyes and see the wonder that we were blessed with that is Zachary and our children. The life sparkle has not gone. It burns as bright as a welder’s torch, it is like the first time you see magnesium burn in a 5th grade science class or the northern star when you are away from the city lights in Northern Michigan.

I do not want to over step my bounds here with respect to how God makes choices but I believe God, knew way before any of us came into being that he would create Zachary with this disease and give him to us. We were deemed special enough to care for him and be his family for whatever amount of time he has been given. Zach has brought us all so much joy with his sense of humor and love for life that it will continue with us until we turn to dust as well. We will not lament for what would have been or should have been, we will celebrate that we have been lucky to have this time together and understand that love will keep us from being bitter and angry. Zach defines the attitude that it not what it is that is happening but what are you going to do about it?

There is not a set time frame for Zachary to leave this world, we just know that the time is drawing near and we will have many family members and friends come to visit to reminisce with Zach and us as well as say their goodbye.

As Thanksgiving approaches, we are thankful for the many blessings we have and will continue to receive through the coming years. We are thankful for family and friends, we are thankful for all of the postings of support that we receive. We are thankful for our core group of friends in Walkers Grove that send their love and prayers and help us keep a somewhat normal mindset. We are thankful that we have a hospice team to make Zachary comfortable and make sure that the quality of time left is worthwhile. Most of all we are thankful for another day that we are together as a family and for the shared experiences, good or bad, that we had together.

Say a prayer for some other families that are distraught and in despair but also say a prayer of thanks for those that have been blessed with good lives and that you are grateful for that (we are).

Love,

Kevin, Paula, James, Zachary, Gage and Sierra (A daughter is one of the most beautiful gifts this world has to give).

Zach McCulloch Update - 11/17/2009 - Where is our Coffey?

Zach is taking the VP 16 but it appears that it is taking its sweet time to provide the desired results. His tumor is growing on his neck and he is coughing more. We are going to the doctor again this Friday and will continue to monitor what seems to be obvious this cancer is not stopping.

I keep thinking about the character from the Green Mile, John Coffey. This was a human miracle that was able to heal a person by sucking the disease out of their body and then throw it up as so much dust in the air and make it disappear. Where is our Coffey? Where is the Coffey for all the other rhabdokids and kids with cancer that die every day way before they have had the full life that we expect them to have. We are on the Green Mile right now....

How do you put into words or paint a picture for those that have never been through it, what it is like to wait and watch and pray for a miracle to heal your child, when you have been told they are going to die. The tumors that have reached his lungs will continue to multiply until he can no longer breathe or the tumors will possibly take over his brain and he will no longer have the capacity to send out the day to day signals to sustain life functions.

We pray for a miracle but are heartbroken. We are at the mercy of this cancer. We want to learn from the life lesson we are being handed (which is being brought to our knees) but it is little comfort at this time that the purpose for Zachary being here, is to get closer to God. This may be the comfort at some point though.

Zachary like most of these cancer kids has never once said to any of us why me or cried about it. Still the morbid thoughts creep in and WE STILL HAVE HIM HERE!!!!!!!!!!

Now we are going to continue to pray the best we can to ask for God’s grace and understand that we are not the ones in control right now.

Please pray for Ashton Miller tonight for clear scans and for some much needed respite from this cancer. The site is http://www.caringbridge.org/visit/ashtonm

Please pray for Vinny at http://www.caringbridge.org/visit/vinnydigerolamo

Please pray for Jeremy Campus, Matt Meiners, Ali, Dylan Turcotte and so many others that have fought and are winning their battles (this is wonderful news).

Jordan Paganelli passed away after his hard fought battle this makes us so sad. http://www.caringbridge.org/visit/jordanpaganelli

Carly at http://www.caringbridge.org/visit/babycarly this beautiful little girl has been fighting so hard!!!

Bella at prayforbella.com

Many others that I may have missed but just pray for them as well.

Oh and please say a prayer for Zachary a miracle may still be out there somewhere!!

Extra special thanks to Larry and Mimi (http://www.carepages.com/carepages/KierstensCarePage) who lost their daughter Kier and Archie Wilson and Family who lost their son Alastair just about one year ago to this awful cancer but continue to provide loving thoughts and support to others even in the face of the own broken hearts.

Love,

Kevin, Paula, James, Zachary, Gage and Sierra (“Her smile beams like sunshine, which fills our hearts with love.”)

Zach McCulloch Update - 11/5/2009 - Im Just A Kid

Zach is in much pain now but still tries to fight through. He started VP 16 yesterday and now we will sit back and see if this gives him any quality moments. Zachary is at an age where he should be off at college or working. He has not had any visitors since August as most all his friends have been busy with their own day to day lives, this is so sad he wants to be with them. When he was going through this as a high schooler there were plenty of people to visit besides his own relatives.

I woke up it was 7
I waited 'till 11
Just to figure out that no one would call
I think i've got a lot of friends but I don't hear from them
What's another night all alone?
When your spending everyday on your own
And here it goes

I'm just a kid and life is a nightmare
I'm just a kid, I know that it's not fair
Nobody cares, cause I'm alone and the world is
Having more fun than me

And maybe when the night is dead, I'll crawl into my bed
staring at these four walls again.
I'll try to think about the last time, I had a good time
Everyone's got somewhere to go
And they're gonna leave me here on my own and here it goes

I'm just a kid and life is a nightmare
I'm just a kid, I know that it's not fair
Nobody cares, cause I'm alone and the world is
Having more fun than me...

What the **** is wrong with me?
Don't fit in with anybody
How did this happen to me?
Wide awake I'm bored and I can't fall asleep
And every night is the worst night ever

I'm just a kid [5 times]

I'm just a kid and life is a nightmare
I'm just a kid, I know that it's not fair
Nobody cares, cause I'm alone and the world is
Nobody wants to be alone in the world.

I'm just a kid and life is a nightmare
I'm just a kid, I know that its not fair
Nobody cares, cause I'm alone and the world is
Nobody wants to be alone in the world
Nobody cares,cause im alone and the world is
having more fun than me tonight

I'm all alone tonight
Nobody cares tonight
Cause I'm just a kid
Tonight...

Zach McCulloch Update - 11/2/2009 - VP 16

This is all so very heartbreaking and happening rapidly. The doctor called today and they want to put Zachary on VP 16.

Here is a brief description of what it is and does:
Oral VP-16 therapy is simple, relatively nontoxic, and does not necessitate hospitalization. The cure rate is small. Given the risk of second malignancy, especially in children with previous exposure to topoisomerase II inhibitors and alkylating agents, this regimen may be used as a palliative treatment or in patients with poor prognosis.

Although we are not giving up (God we will never give up), perhaps the blessing now is that we can buy some more time with our son, cousin, grandson, friend. We are being told that a miracle is what is needed. Zachary is thinking that he has had enough and unless the treatment is something well tolerated he does not want to spend his remaining time confined by the side effects that all of this treatment has rained down upon him. Zach weighs about 125 pounds right now. He is going to try and spend however much time he has left on his own terms. Can we travel? Who knows? Can we try and make sure that he transitions to the kingdom of heaven? Absolutely. Please remember that as tough as this is, love has known no bounds here. I worry about the impact on his brothers and sisters as well as other family members. We will be here no matter what. It is a nightmare that is real….

Thanks for everyone who has supported us through such a rough time we hope we can repay it someday. Everyone of you should be proud of the kind of people you are.
Please pray for the following families as they are going through similar circumstance and they need your prayers and support as well. Just so heartbreaking and so wrong.

Jordan Pagenelli http://www.caringbridge.org/visit/jordanpaganelli
Nick Raitt http://nick-raitt.blogspot.com/

Love,

Kevin, Paula, James, Zachary, Gage and Sierra (“In every girl is a goddess.”)