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.”)

Zach McCulloch Update - 10/30/2009 - My Chemical Romance (3 1/2 years)

My Chemical Romance (3 1/2 years)

Printed without permission

Turn away,
If you could get me a drink
Of water 'cause my lips are chapped and faded
Call my aunt Marie
Help her gather all my things
And bury me in all my favorite colors,
My sisters and my brothers, still,
I will not catch you,
'Cause the hardest part of this is leaving you.

Now turn away,
'Cause I'm awful just to see
'Cause all my hairs abandoned all my body,
Oh, my agony,
Know that I will never marry,
And baby, I'm just soggy from the chemo,
We're counting down the days to go
It just ain't living
And I just hope you know

That if you say (if you say)
Goodbye tonight (goodbye tonight)
I'll ask you to be true (cause I'll ask you to be true)

'Cause the hardest part of this is leaving you
'Cause the hardest part of this is leaving you

Zach McCulloch Update - 10/27/2009 - Blood Tests Came Back...

Update from today's earlier post

Blood test came back and we are good to go (so we have been told). Now it is up to Zach and what his whishes are...

Thanks again everybody for your messages of support......

Zach McCulloch Update - 10/27/2009 - Hurry up and wait

Zach just received some interesting news but not a reprieve from the Governor. We were called at 3:34 CST by Children’s Memorial Hospital today 10-27-09 and told that Zach’s blood results from last week were not back yet. If we do not get clearance regarding certain metrics that need to be met he can’t start the latest trial (Phase 2 Trabectedin) that he signed off on last week. He is to start tomorrow.

2 weeks ago Zach took a whole day to go through various scans so that we had an initial staging, of his disease and what we are trying to treat, a baseline if you will. If he can not start tomorrow then he is being asked to go through this whole process again. Part of the protocol says that scans 2 week old or older are no longer useful. It is not easy on someone who has already set his sights on finally starting a treatment, to help him prolong his life (cure would be the miracle). This call is very last minute and has crushed Zachary to the extent that he may choose to do nothing now. Understand he is now considering doing nothing. How do you think that makes a parent feel? Paula and I will let you know when we feel our hearts beat again. The psyche of someone who has been beaten down by not only the cancer but the system, is very fragile. Getting your hopes up and having them crushed is not fun for anyone but in this case, it is the difference between life and death, literally. So now we have more questions, why would such an important result from the blood test not be completed? I can’t believe that we need to be on top of every detail no matter how small. Assuming that everyone is operating in the most expedient manner and in the best interest of your child has been a hard lesson to learn and one we have tried to not take lightly. Quite frankly institutions mean well particularly in the world of pediatric medicine but they still are overwhelmed and miss some crucial details from time to time. We can only advocate for our son and this makes us quite angry and confused. It adds to the stress level to a degree that I could never fully describe here. Anger is not an emotion that we want to overwhelm us. It breeds a negative attitude in the approach to everything.

So we wait again and know that the cancer continues to grow and possibly spread to other areas. We spend so much of our time telling all our children that life is worth trying to hold on to as long as there is hope and a quality that can be maintained that is good. Zachary has not reached the life is not worth living anymore stage but these series of events is going to expedite this reality if we do not get something going soon.

Hope to post again that he gets to start tomorrow, because his blood work is all good.

Please pray for someone tonight that is having a tougher time than all of us. We pray that others are comforted in their darkest days and will soon begin to see the light.

We have had another great day because we are still all together. Tomorrow has unfolded and holds the promise of being another day that we will be together.
We want to thank everyone but special thanks to Brad King and Mike Vredevoogd (never had better friends).

So we Hurry Up and Wait……….

Love,

Kevin, Paula, James, Zachary, Gage and Sierra (“Be to her virtues very kind,
Be to her faults a little blind”).

Zach McCulloch Update - 10/18/2009 - Quick Update

Zachary was told that the trial he signed off on was closed and he could not partitcipate. He signed the paperwork to participate Tuesday and was told sorry, it was closed (next day Wednesday). Next step was to request the agent for compassionate use and he was denied this as well. The reason given was that the efficacy of this IGFR has not proven to help those with Rhabdomyosarcoma. I asked the oncologist what is the point of placing rhabdo patients into this trial if it does not help. He was as surprised by the compassionate use rejection as we were. Perhaps a blessing why waste time with something that is failing these kids.

Next we have found out that the cancer has spread now to Zachary's lungs and his liver. Now we have a challenge that is becoming greater by the second. We have 2 doctors working on the next course of action. Time seems to be running out so quickly.

We will continue to remain strong and positive (even though it seems Zach just can not get a break). I do not need to tell anyone the toll this takes on a family, spiritually, emotionally, financially and stress.

Thanks for the prayers and we will never give up. It sucks when you can only move so fast and when a decision is made it gets pulled away.

Love,
Kevin, Paula, James, Zachary, Gage and Sierra("A daughter is a miracle that never ceases to be miraculous...full of beauty and forever beautiful...loving and caring and truly amazing").

Zach McCulloch Update - 10/12/2009 - Shelter From The Storm

First please say prayers for the family of Jessica Easley here is the link. http://www.caringbridge.org/visit/jessicaeasley. She has been at home and short of a major miracle she will be with the heavenly father soon. This family is more courageous than you can imagine. The description of the hell they have been going through though is not for the faint of heart.

Well it appears that we have gathering clouds all around us. Gloomy thoughts can really start to invade your consciousness when it appears that the storm could be quite fierce as it focuses its energy to tear through and leave things upside down. Yet there is a glimpse of sunshine and it appears that it is trying to make the clouds part. We have now begun the journey into the world of clinical trials. A trial that we hope Zachary is found innocent. If the cancer finds him guilty then death will be the sentence. I know not the same thing as a trial in the clinical sense but this is how the mind wanders.
Is this going to be our miracle? If we can’t help Zachary, will this help others? Is that the comfort that the mind finds when things appear to be bleak so that we can continue in a positive light no matter what is at stake?

I want to thank Archie Wilson who lost his own son Alastair to this monster and has been a wealth of information and support. He is the definition of a positive attitude. We humbly thank him and his family for sharing their son’s experience. There is no better memorial than how this Father (and family) keeps his son in his heart every moment of every day.

Please say a prayer that Zach's scans come back in our favor for no metastasis. He has been without treatment options for the past 7 weeks and we are frightened that this cancer is relentless.

We enter a phase 2 trial at a new hospital so we have a whole new medical team and facility to learn about. It really is hard to leave what you have been comfortable with but still if we do not push on Zachary may die (which is what they were trying to tell us anyway). Zachary is not going to go away quietly. He has spent these last seven weeks getting into the mindset that treatment begins again. We will know if the treatment is having any effect within 2 months (counting on this long). If it is not working then we will weigh our options again. Radiation is a possibility for decreasing the size of the tumor (who knows maybe it will punch this out) no radiation while in the trial though. They need to see how the treatment is working there are very strict guidelines.

Pray that we get our miracle, please, we still have a chance. We can see the gnat’s **** but we are shooting at it with a bb gun.

Love,

Kevin, Paula, James, Zachary, Gage and Sierra (Look deep and see the garden in her eyes, it is here that you will find where everything is possible).