Zach McCulloch

Zach McCulloch Update - 12/31/2009 - Extra, Extra read all about it!

2009-12-31T18:33:00.002-06:00

I would need the Sunday edition of the New York Times, front to back every section plus the Christmas ads to fully describe all things Zachary. Then I would need a special addtion as well. Instead I have reposted his obituary below as it appeared in The Herald News/Suburban Chicago addtion today and again tomorrow.

Truly amazing stuff. Our neighbors on our street place luminaries all around our street in honor of our son and to show their love for us. I will post pictures later but thanks to all of you............

See, love is the key, for those that figure this out early in life you truly are blessed.

Thanks for the messages of support for our son and our family from our caepages family.

Ashton Miller has had a few hiccups on her trip to Paris but I understand that she is having a fabulous time. Pray that cancer gets wiped from the face of the earth. Many people are heartbroken, sad and need prayers as well. Always someone that has it worse than you even in your darkest hours.

Zachary Donald McCulloch, see you sometime our son. Thank you God for letting him pass in his sleep. I hope that you are keeping after him... He will be the one listening to Eminem, I told him to listen to the edited version from Walmart upon arrival.

Zachary Donald McCulloch, 19, of Plainfield, IL.

Zachary bravely fought a 3 ½ year battle with Rhabdomyosarcoma cancer and peacefully entered his eternal life on December 29, 2009 with his family at his side. He was born April 15, 1990 in Indianapolis, IN. He is survived by his devoted parents, Kevin and Paula McCulloch; his special brothers and sister, James, Gage and Sierra McCulloch; his paternal grandparents, Donald and Shirley McCulloch, and maternal grandparents, Thomas and Virginia Antczak; as well as many loving aunts, uncles, cousins and friends; and his dog, Wishes. Zachary was a proud graduate of the first class from Plainfield North High School. He loved spending time at the family cabin on the Ausable River in Northern Michigan. Music was a big part of his life and he connected with the songs of Sublime, My Chemical Romance, Avenged Sevenfold and Eminem. He enjoyed football and his Chicago Bears. Above all else, Zach loved his family and friends.

A celebration of Zachary's life will be held on Saturday, January 2, 2010 from 3:00 until 7:00 PM at the Overman-Jones Funeral Home, Plainfield and CASUAL ATTIRE IS REQUIRED.

The family would appreciate any memorials being made to the Bear Necessities Pediatric Cancer Foundation, 55 West Wacker Dr, Suite 1100, Chicago, IL 60601 or at www.bearnecessities.org.

Friends are encouraged to bring a copy of a favorite picture(s) of Zachary to share with his family. OVERMAN-JONES FUNERAL HOME Coroner of Routes 30 & 59, Plainfield (815) 436-9221 or www.overman-jones.com

Love,

Kevin, Paula, James, Zachary (Forever 19), Gage and Sierra

In Loving Memory of Zachary Donald McCulloch - Goodbye Celebration - January 2nd, 2010

2009-12-30T14:31:00.000-06:00

A celebration of Zachary's life will be held on January 2nd, 2010 from 3:00p.m - 7:00p.m at the Overman-Jones Funeral Home, Plainfield and CASUAL ATTIRE IS REQUIRED.

Friends are encouraged to bring a copy of a favorite picture (s) of Zachary to share with his family.

Zach McCulloch Update - 12/29/2009 - This journey ends.... A new one begins...

2009-12-29T23:05:00.001-06:00

A Parents Lament

(I can’t believe he is gone)

There is no more dying only one who is dead
Cancer could not take the loving thoughts from his head
The dominion that cancer thought it could own
Has now vanished on the wings that to heaven have flown
The spirit that shone bright will never be gone
For it is the essence of this to which we were drawn
It has penetrated the hearts of loved ones left behind
It echoes with memories in the heart and the mind
The release that came was by your own provision
Cancer did not make the final decision
So rest gentle and long our beautiful son
Know that your purpose on earth was indisputably done
Your story passed on by generations forevermore
For you are the one that we will always adore
From the start we were blessed with unwavering love
For you were given to us from God above

This poem that I have written for our son, brother, cousin, grandson, friend comes from a piece of my heart that is gone forever. I can only measure his time with us by the amount of love that we were blessed with and the amount that will continue. I expect that the remaining part of our hearts will heal and we have learned to not take for granted the many blessings that are still abundant. The truths that we have learned from the experience, we will try to share so that others do not need to have such a life changing event be their wake up call. The Earth will continue to turn, the sun will continue to shine and the wind will blow but maybe just a little colder for awhile.

We will update again when clarity has arrived. In the meantime if anyone was planning on sending flowers please send them to a person who is living and that you cherish. No better tribute could be done then this in Zach’s memory. Flowers are another blessing for us all and should be enjoyed by the living!

We continue to try and understand the lessons that God has for us and know that his plan is one that has no oversight.

Love,

Kevin, Paula, James, Zachary (forever 19), 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 - 12/28/2009 - Holidaze

2009-12-28T13:43:00.001-06:00

Dazed but not confused, we understand completely what is happening in our lives and are trying to make the best of this story yet to unfold. I cannot say what life will be like without Zachary, I can only assume that it will hurt beyond imagination but since that day has not arrived it makes it easier to live in the moments we have now.

We had a nice Christmas together, Zach tried to crawl from his bed and down the stairs to open presents and take pictures but the best he could do was get to the top of the stairs, sit for 15 minutes and then turn around and crawl back to his bed. His brothers and sister carried every present upstairs and we had a fun time watching each other un-wrap their gifts.

Zach went through all of the Sunday ads very carefully and sent me on a shopping spree for his Mother, and brothers and sister. He circled everything out, gave me money and sent me on my way. I must tell you that shopping (especially this time of year) is not one of my favorite things to do but in this case it was a very nice distraction. Every gift picked out was perfect and will be cherished for years to come.

Zach has his pain meds and they seem to be working fine, hospice continues to escalate the dose schedule it seems almost every other day (he is my Mighty Morphine Power Ranger). The main tumor that has grown on his carotid has now grown outside of the ear. His hearing is totally gone on that side. He can barely speak so he is writing many messages which have alleviated the frustration from trying to guess at what was being said. Zach says now would be a good time to play Pictionary!!

We still pray for a miracle that the tumor(s) would disappear but also we pray that if it is God's will to take our son then that it is done in the kindest way possible (I know oxymoron, cancer and kind). We have found ways to say I love you in every minute and second that we have (this is easy as we have always done this).
We all continue to be dazed by this process waiting for a miracle or a loved one to die sure keeps everyone in a holding pattern. There is no handbook (other than the bible maybe) that can prepare you to deal with the minute to minute haze that you operate in. As I will mention though, we still have Zach with us and are trying to live life to the fullest even though we are now confined to his bedroom. Zach still goes on facebook, he still watches his favorite shows on tv, he still reads, he still allows us to kiss him and gently rub our cheeks on his head or his own cheek (hugs are pretty much difficult). His sense of humor still can come through but also there is still the spark for life yet. Zach will make it into the New Year; he is willing himself to do so.

We want to thank everyone for their messages of support; these continue to let us know we are not alone. I especially want to thank James, Gage and Sierra for the love and support they have been giving during this process. I have 4 amazing children and of course 1 amazing wife (and Mom), who I swear, is 15 people with everything she manages to do.

Finally I need to thank God for giving us the source of strength that one needs during such a time.

Love,

Kevin, Paula, James, Zach, Gage and Sierra (“The beauty of a girl cannot be mimicked, fabricated, or created by human means, it only occurs naturally”).

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

2009-12-18T17:31:00.002-06:00

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

2009-12-09T19:53:00.007-06:00

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 Rhabdomyosarcoma.

Here is the donation site:

Ashton's Angels

Thank You!

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

2009-12-06T18:42:00.002-06:00

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.....

2009-11-24T12:39:00.002-06:00

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?

2009-11-17T20:20:00.001-06:00

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

2009-11-05T18:14:00.000-06:00

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

2009-11-02T18:10:00.000-06:00

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)

2009-10-30T17:28:00.000-05:00

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...

2009-10-27T21:25:00.000-05:00

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

2009-10-27T19:00:00.001-05:00

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

2009-10-18T23:00:00.000-05:00

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

2009-10-12T14:55:00.002-05:00

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).

Zach McCulloch Update - 9/14/2009 - Back in the Hospital again

2009-09-14T14:18:00.001-05:00

Back in the Hospital again

Just a quick update….

We checked in early Saturday as Zach was running a fever of 104 degrees. They have spent the last few days giving Zach blood transfusions while trying to ferret out where the infection is coming from. The blood was needed due to low counts with respect to HGB (hemoglobin).

Preliminary x-rays had indicated that he possibly had pneumonia. This was ruled out yesterday afternoon. Now they believe that it may be hiding somewhere in the digestive track. The x-ray also indicated that Zachary’s picc line has entered his right atrium so now they must perform a procedure to pull this back and place it in the proper position. No one seems to know why it is out of position (this has been in place since Valentine’s Day of 2008).

We still are wrestling with the current thought that his treatment options are limited. The idea of his doctor’s just giving him a pill and then saying see ya later is tough to swallow (pun intended). Today we are going to insist that his entire doctor’s team put together a comprehensive case report so that we can build a dossier to send for opinions from the top cancer treatment centers in the U.S. and the World. We have done our best to log a record of all treatments but we are sure that over a 3 and ½ year journey that we are not as comprehensive as the hospital and their staff should be.

The journey from denial to acceptance is going to be a long one as far as we are concerned. Each time I hug Zachary I never want to let go, we are so grateful for any and all time we have together, let’s hope that dreams are not the only place where nothing is impossible.

Thanks to everyone for your messages of support they are so appreciated!!!

Love,

Kevin, Paula, James, Zachary, Gage and Sierra (this girl gives me a view into what my own wife must have been like growing up, I think it is the best look I will ever get into the secret life of girls).

Zach McCulloch Update - 9/1/2009 - Palliative

2009-09-01T14:13:00.001-05:00

Palliative

Palliative: is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than striving to halt, delay, or reverse progression of the disease itself or provide a cure. The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness. Non-hospice palliative care is not dependent on prognosis and is offered in conjunction with curative and all other appropriate forms of medical treatment. It should not be confused with hospice care which delivers palliative care to those at the end of life.

Zachary is not at life end right now. We are trying to maintain the cancer and hope that other options become available.

We have not posted recently as this is a difficult post to write. We are being told that we have time to put together a "bucket list" or as a friend's sister referred us to, a list of 100 things you would like to do before life slips away (check out Buried Life Boys, just Google it).

Zach was basically in the hospital for the whole month of August and this was due to complications from the next "cure". When the cure is worse than the disease you are trying to treat it means take a step back and take another look at what is being accomplished. We agree that this course of treatment needs to stop, after all, the definition of insanity (if not cancer itself) is doing the same thing over and over again and achieving the same results. We have some hope that one round of this chemo may have sent this cancer to its final death. We will know more once we have an MRI and CT of the area.

We are not posting this with heavy heart, indeed just the opposite. We hope to still find a cure while in this holding pattern but we also are going to live life as normal as possible and move up things that we always say we have time for. Isn't this the way we all should live everyday anyway? Perhaps we will be the lucky ones that really get to know each other as a family (with friends) to an extent or depth that we never really imagined. We are not going to be angry because it will consume us. We also would like to not become comfortably numb and understand the situation that this cancer has put us all in but of course mainly Zach.

We do not have a treatment option right now that would be the nuclear bomb, the big gun the coup d’état. We are facing the executioner and its name is cancer. We liken this to be sentenced to death and placed on death row. The difference with this death row is that Zach is not locked down and does have a chance to try and understand what life still holds and the many wonderful things that are here to explore while we spend our time going through this thing called life. Just as there are no bars to keep him down, there is no cancer that will keep him down. So in a sense he has been set free already.

We all are born and from the minute we are born, we are sentenced to die. It is up to us to make the most of what seconds, minutes, days, months and years we have ( insert the song from RENT here, NO DAY BUT TODAY, 525,600 minutes) We take for granted that we have a certain time here on Earth and we live our lives. The potential for losing one of your children or loved ones before this assumed time that we think we have, should sharpen the focus of how we really should live each day to the fullest, like it is our last because it just may be. We hope that we can gauge this time by the amount of Love we maintain. Truly hope we can further define this word Love and show affection, tenderness, passion and friendship that endure time. This is our time and we will not let it just casually or carelessly, allow it to go by.

Please be assured we will try and leave no stone unturned or option explored. We have a cancer that is being uncooperative and stubborn over the last 3 and ½ years.

Please say a prayer for a loved one and then for someone you may have never met or know. We would not trade our circumstance for any other. We are living this life that we have the best we can.

Love,

Kevin, Paula, James, Zachary, Gage and Sierra (A daughter is a bundle of firsts that excite and delight, giggles that come from deep inside and are always contagious, everything wonderful and precious and your love for her knows no bounds.)

Zach McCulloch Update - 8/17/2009 - Latest Chemo

2009-08-17T21:11:00.001-05:00

Latest Chemo

This latest treatment has really kicked Zach's butt!

Zach has basically been in the hospital for the past 13 days and counting. 5 days for the actual treatment and the other 8 days for all the side effects. High fever, low blood counts, nausea. vomiting and shakes. Also this takes Zach and his Mother away from us. We miss them terribly and can never get this time back.

Cancer is a robber, it keeps taking and taking and then searching for more. It takes what would be a minor issue and complicates it exponentially. The questions one asks daily interfere with so many other daily activities that staying focused may be the miracle. There is no schedule with cancer. There is no planing with cancer. Even treatment options are at the mercy of cancer. You never know if it is gone or simply lying in wait for an opportunity to wreak havoc again. It has it's own agenda ubtil it is forced away or completes its job.

Enough complaining though we still have our family (we always will, those that went before, those here now and those still being dreamt of).

We pray that these hospital stays are working to help Zach survive and beat this cancer back.

Love,
Kevin, Paula, James, Zachary, Gage and Sierra (Where shall we see a better daughter or a kinder sister or a truer friend).

Zach McCulloch Update - 7/25/2009 - ICE ICE BABY

2009-07-25T16:50:00.000-05:00

ICE ICE BABY

I wish that this was water that was frozen into a solid state that was going to cure Zachary. Unfortunately we have found out that ICE is an acronym for 3 different types of chemo. Zach will have six 5 day stays in the hospital with a two week intermission if you will, in between each treatment to snuff out the cancer that has remained even after this last round of radiation and surgery. 90 day course of action....

ICE is a combination chemotherapy regimen employing three drugs: ifosfamide (trade name: Ifex), carboplatin (trade name: Paraplatin), and etoposide (trade names: VP-16, VePesid). This regimen is commonly used to treat primary progressive and poor-risk recurrent lymphomas.

Perhaps Vanilla Ice summed it up best with a few liberties taken in the words (Sung to Ice Ice Baby).

Yo Dr’s let's kick it

ICE ICE BABY
ICE ICE BABY
All right stop calibrate and listen
ICE is here and got my attention
Cancer grabs a hold of me tightly
Flow like a harpoon daily and nightly
Will it ever stop yo I don't know
Turn off the lights and let the chemo flow
To the extreme hoping it’s something I can handle
Trying to save my life by burning both ends of a candle
Hoping medicine works to stop impending doom
Keep from killing me off and bring an early tomb
Deadly type of game to play this stuff ain’t friendly
Anything less than the best could cause a faint ending
Love it or leave it I better gain weight
You better hit bull's eye or the kid can’t stay
If there was a problem yo Chemo will solve it
Check out the poison while my DR. dissolves it
ICE ICE BABY
ICE ICE BABY

How do you dance when you just don’t feel like dancing? You just do it!
How do you sing when you can’t find a song in your heart? You just do it!
How do you live when living seems to be so hard some days? You just do it!
How do you survive when survival may mean a life that has never ending health issues and challenges until the Lord calls you home? You just do it and of course keep your faith!

We celebrate our son and the courage that he has shown to keep after this cancer. The cancer will never take Zach and what he means to his family and friends. This will never defeat him or his resolve. Zachary is what a man is and should be. Loving, caring, determined, humble, passionate, kind, humorous, faithful, loyal, devoted etc…. I could fill this page.

While the odds seem to stack up against us and it seems Zach can not catch a break on this journey we still have treatment options (what a blessing this is).

Say a prayer tonight for someone, just a simple prayer to bring comfort and peace of mind for any period of time is a blessing. The heavenly father hears even though it seems he may be concentrating elsewhere.

Much Love,

Kevin, Paula, James, Zachary, Gage and Sierra (A girl without freckles is like a night without stars).

Zach McCulloch Update - 7/11/2009 - Recovery

2009-07-11T11:22:00.000-05:00

Recovery

Posted Jul 11, 2009 8:17am

Hi Everyone,

We have been in Northern Michigan the past 2 and a half weeks. Zachary continues to recover. I must say that this has been a difficult recovery for him as he feels that he is back to square one. We feel that he has progressed just by the shear fact that his final pathology indicated that there were clear margins and went as well as could be expected.

Zach will have reconstructive surgery next month (3rd time) and then a course of chemo will be determined. He has not had any chemo since January. We worry about the status of the rest of his body as this cancer is nasty business.

Sitting in the woods has always brought my wife and me much comfort. We listen to the rushing water of the river and enjoy how peaceful it is without any other human contact. I believe that this is better therapy for all of us than any wellbutrin or zoloft a doctor could prescribe. We do not take any of these and do not mean to offend anyone who needs these sources to help to make it through such an experience.

Anyway the woods at night are something else altogether. Although we never felt something was lurking out there we feel as if there is a monster and it is called cancer. Did we finally send it to the death it deserves or is it merely hibernating to awaken again and become the entity that it is., a source of pure destruction and malevolence. I have been thinking about the word fear as well (see what a few bloody mary's and time will do?)and what it means. I have a few acronyms for fear.

The first is:
F**k
Everything
And
Run

This concept does cross everyone’s mind at some time or another when things disrupt your normal routine and change the world as you know it. Just disappear for whatever time it takes to make a situation better, Inevitably though, when you return nothing has gotten better and probably has gotten exponentially gotten worse. Not a choice when you take a breath and think about it.

I like this one the best:

Fix
Everything
And
Recover

This means stay the course even though it has stretched the bounds of the human spirit and the energy that is needed physically. We have been in this process for 3 and a half years now and know that treatment offers hope. We are blessed that we have been in the North woods again, together warts and all. We are just human beings trying to make sense of where life takes us. What else can you do? At the age of 50, I am asking a different set of questions about life than someone else who is in their teens or early twenties or our parents who are in their 80’s.

As always pray for someone that needs some sort of comfort or guidance. We have our circumstances as does everyone else.

Love,

Kevin, Paula, James, Zach, 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 - 6/20/2009 - Surgery Today 4th Time

2009-06-20T11:15:00.015-05:00

Rhab-doh, Rhab-a-a-doh

Daylight come and me wan' go home
Rhab, me say Rhab, me say Rhab, me say Rhab
Me say Rhab, me say Rhab-a-a-doh
Daylight come and me wan' go home

This has been going through my head all morning with the voice of Harry Belafonte, clearly capturing the nuance of this short word for rhabdomyosarcoma in place of Day-o.

We just sent our son Zachary off for his fourth surgery since diagnosis Rhabdo, at 7:00AM. This one is scheduled for a full 8 hours. They plan to remove any residual tumor(after radiation), remove 6 to 8 teeth (due to chemo and radiation rotting them away), remove most of the bone in his jaw joint, reconstruct the jaw joint with a prosthetic if there is enough bone left to attach. If there is not enough bone they will wire his jaw shut for 4 to 6 weeks and then build a custom approach to his jaw.

The reward is survival for hopefully a long time. After all this is why we do this. Or perhaps we do this because we all need something to believe in and even though the treatments all come with their various outcomes (I could say treat as in TREATment but having a deformity does not seem like a treat) we know that if we do not continue to pursue this aggressively, Zach will not improve his prognosis for a long life.

We simply ask that you pray for us today as well as the surgeons and the staff and that God guides their hands to be excellent and give Zach a better prognosis. We also ask that you pray for other families that face the same circumstance. We ask that you pray for anyone that has a struggle that has turned their world upside down. There seems to be so many things that are happening to so many families job loss, sickness, loss of faith, a loved one passing and just general despair over what is happening in the world. We are facing such despair (for now) but no different from many others.

We do however believe that life is full of more delightful times than horrific times. These life changing events just magnify the fact that life is really good and that we are reminded of what a really magnificent world we have.

Thank you Plainfield, our family and friends, Mikey Corbett Foundation, Bear Necessities, Chicago Bears (Peanut Tillman) Make A Wish, Zabiki family, our friends at Rhabdokids, and anyone else we may have forgotten.

Please see the latest pictures from an outing with Charles Tillman of the Chicago Bears and his Charles Tillman's Cornerstone Foundation.

Love,

Kevin, Paula, James, Zachary, Gage and Sierra (a smile that radiates like sunshine, that fills our hearts with love.)

Zach McCulloch Update - 5/21/2009 - Wow does time fly

2009-05-22T07:19:00.001-05:00

Sorry we have not updated lately.

This will be short.... Not much to report. Zach had radiation almost a month ago and it continues to work on the tumor. He has surgery scheduled for the 11th or 12th of June. Next week an MRI to see how the radiation is working as well as a preliminary roadmap for the surgery.

No decision on chemo yet, just that there will be something.

Zach continues to make the most of everyday and is ready for wherever this course of treatment takes him.

Love,

Kevin, Paula, James, Zach, Gage and Sierra (I see myself but only much better).

Zach McCulloch Update - 4/18/2006 - Birthday Pics and Next Week

2009-04-18T21:17:00.010-05:00

Zach had a wonderful birthday!!

Please see the updated photos and particularly the cake that was sent by the Zabicki's, Roman and Laura. Paula made a great cake but she agrees that what Roman and Laura sent was just out of this world. I would need to get out a thesaurus to enlist in word all the superlatives that this cake deserves. Chicago Bears for Zach all the time....

They also have let us draw on the strength of their son Danny and his "bite me cancer" attitude. Danny could not be defeated by cancer in any way shape or form. He took the lessons instilled in him by his parents and magnified them 100 fold during his all to brief stay with us here outside the eternal kingdom. We know this because they shared their love and heart with more people than you can imagine. Just look at the pictures.

1st phase of treatment for this 3rd treatment regimine starts next week. 5 days of radiation that will hit this tumor hard and send it to where it belongs (dead).

Love,

Kevin, Paula, James, Zachary, Gage and Sierra (Makes you understand that beauty is visible from the outside but sure radiates from within, much like her mother).

Zach McCulloch Update - 4/15/2006 - Happy Birthday Zach!

2009-04-15T18:28:00.000-05:00

Today Zach turned 19 at 11:57 AM.

HAPPY BIRTHDAY SON!!!!!!! WE LOVE YOU!!!!!!!

Will update again soon with some pictures....

Today has been a very good day for us however, there are other families that have been getting some challenging news and need some prayer, Bella, Ty Michael, Nick Brower and Matt Meiners.

Love,

Kevin, Paula, James, Zachary, Gage and Sierra(who reminds me that being the girl is no big deal!!)

Zach McCulloch Update - 4/8/2009 - Update

2009-04-08T22:53:00.003-05:00

Well, we have been through an interesting 4 weeks. It included a 5 day hospital stay for infection, many scans including a pet scan and ultimately a biopsy done via needle and ct guided to determine the pathology.

The pet scan came back negative and the CT and MRI came back positive. The only thing that matters though is the biopsy and this was positive for rhabdo and return of tumor. So now, we have the following course of action.

Radiation, we meet with Zach's radiologist/oncologist tomorrow to determine dose and number of treatments.

Surgery to resect the tumor(again) and hopefully gain control.

Chemotherapy...but this is tough it has not been decided whether Zach will enter a trial in the adult oncology world (more in the next update), Temador (new for Zach) and Irrinotecan (had before) or Cytoxan and Vinorelbine but the addtion of Avastan at some point.

This really sucks that Zach has to go through this again. He has been through 2 long regimines already and we fear a 3rd more than I can ever express. Zach is tough but even this turn of events can test the toughest of us all.

I will try and update more thoroughly later. Right now, we are trying to keep depression outside of our home and be grateful that we are here together (as much as you can be with 4 active teenagers, even one with cancer who still wants to live life as full as he can).

Zachary turns 19 in one more week. The blessing is that we will be able to celebrate another birthday together.

Good Friday is soon here.......

Love,

Kevin, Paula, James, Zachary, Gage and Sierra(a true beauty and smart to boot!!!)

Zach McCulloch Update - 3/11/2009 - 3rd times the charm?

2009-03-11T18:37:00.005-05:00

3rd times the charm?

OK, our tumor is back. It is located at the original site. Not the news we were hoping for but nonetheless it is a reality. We are all of the mind set that it is not what the situation is (because there is nothing that can change it) but what are we going to do about it. We have surgery as an option again and Zach is going to go for it again. The surgery will be as radical as possible to try and eliminate this cancer but we also know there are no guarantees.

No one is saying game over...just more surgery and chemo are on the horizon and we will support Zachary to any degree necessary. We love him more today (as with all our children) than we did the day before. We are confident that we have the best caregivers available ANYWHERE and that we have to follow the plan that the heavenly father has for us and that only he knows.

So, the good news is that we have not run out of options. We are now experts at recovery and can manage Zach's comfort and all our family and friends are here to support us. The cancer has not manifested itself anywhere else in his body and he Zach is if nothing else still young and resilient. He sure is going to go down in flames if need be.

I have tried to keep this a "G" rated update. If anyone would like to insert a few expletives please feel free.

We love you all and pray for all families that are going through their own personal trials in life.

We will keep everyone updated.

Kevin, Paula, James, Zachary, Gage and Sierra ( I believe that some french guy (Maurice Chevalier) sang Thank Heaven For Little Girls)

Please pray that the surgery goes well as it is scheduled for April 6th. We will then celebrate Zach's 19th birthday 9 days later.

Zach McCulloch Update - 2/14/2009 - One year ago today..

2009-02-14T13:42:00.001-06:00

One year ago today..

It is true what they say about what a difference a year makes. One year ago Zachary went through what would be 14 hours of surgery and the beginning of a 47 day hospital stay. How Paula and I long for the days when all our children had to care about on this Valentines Day was the great anticipation of a decorated shoe box soon full of Valentines from their friends and classmates.

Now, they worry about their brother and the battle that continues as he struggles to adjust to his maintenance program. I would not say that it has been as easy as the Doctors may lead you to think. Zach spent 3 days in the hospital last week due to low blood counts which led to neutropenic fever (this was after the first full month of treatment). When fever arrives they do not mess around. Hospitalization happens. They pumped him full of antibiotics and pain meds which did indeed make him better (as they always have). He loses his appetite for 2 days after the vinorelbine is administered but it does come back (of course with help from marinol). I also would mention that he does bounce back much quicker overall and his blood counts were very good going into the start of his second month of treatments.

We are now going to travel to Lockport Illinois to have these done. This should make a difference in how much of the day is taken up for a couple of reasons. First the drive time will be cut down considerably and the wait to get his chemo will be less due to fact that fewer people will be at this satellite office. There is a never ending stream of cancer patients at Loyola and everyone waits their turn to be treated. Most wait times are 2 to 3 hours just to get blood results and the chemo administered at a minimum (often longer) combine that with an hour to an hour and a half commute each way and you really can see how quickly he day is lost.

Zachary does not complain and still does many things you would expect an 18 year old (19 in April) would do. That age sounds pretty sweet when you think we started this journey while Zach was still 15 and many other children have not made it. We continue the hopeful outlook and will report again after Zachary has his 3 month scans net month (we can feel the scanxiety building already).

Last but not least we give praise to the heavenly father whose grace has kept Zachary here with us.

We love our family, friends and community so much. Happy Valentines Day to all of you.

Please remember to pray for others that are having a hard time or have lost their loved ones.

Love,

Kevin, Paula, James, Zachary, Gage and Sierra( thank God for the girl because when it comes to boys, I quote Forrest Gump “Stupid is as stupid does”.

>>>>Most of posts on this blog are written by Kevin McCulloch (Zach's Dad) and copied from http://www.carepages.com/ in an effort to share their thoughts, their hopes, their dreams and their frustrations while they help Zach battle cancer.

Zach McCulloch Update - 1/21/2009 - Kinder gentler poison..

2009-01-21T19:20:00.000-06:00

Hello from the frozen tundra of CHICAGOLAND.....

Zachary started his maintenance program last week. It involves daily doses of Cytoxan (oral) and an intravenouss dose of Vinorelbine each Monday for 3 weeks straight and then a week off from everything. They call this a kinder gentler chemo but in reality it comes with a certain level of toxcicity that has made Zach tired. His blood counts were all good but the expectation is that he will need to take Neulasta shots which is a drug that helps keep his white blood cells at an acceptable level so that he can keep an ability to fight off any other type of sickness that he would be more susceptible to. Zachary will be on this maintenance for at least a year. He also will have MRI of the head every and CT of the chest every three months with complete bone scans every 6 months.

This cancer is really nasty business. We need to stay ever diligent and Zachary has an attitude that will help him stay the course. We are still in the game and grateful even though the poison keeps coming.

Thanks again to everyone this past year for your messages of encouragement. We also want to thank our neighbors and friends. We love you all the meals and support went a long way to helping Zach have a better prognosis and helping us keep our sanity without an abundant use of subscription drugs (none) or alchohol (very little). We also want to thank the heavenly father for his grace last on the list but certainly not least. I suspect the updates will be fewwer as Zach continues to settle in but anyone that would need info on this course of treatment and how Zach is doing please e-mail or leave a message and we will provide info regarding the experience.

The new normal is here and we seem to be used to it (this is a good thing).

Love,

Kevin, Paula, James, Zachary, Gage and Sierra

Zach McCulloch Update - 1/9/2009 - Not much going on

2009-01-09T08:47:00.002-06:00

Hi everyone...

Just a quick update to let you all know that we have been fortunate to have had quiet days.

Zachary continues to heal nicely from his reconstruct and although we always felt he looked beautiful anyway, it is amazing what the Doctor at Loyola and his team have done to piece Zach back together and help with the mental healing process as well as the physical.

Prayers need to go out for to following:

The Miller family and their daughter Ashton. She just went through a lengthy operation to remove this Rhabdo beast which came back after the first round of treatment. We now need to pray that they are able to make the right decisions (which they will) for the next course of action.

Here is the link to their site.

www.caringbridge.org/visit/ashtonm

Jessica LaMere and her son John, have just found out that this young man's Rhabdo has come back as well. Please pray that they find the strength to stay the course and go through the needed treatments once again to finally eliminate this beast.

www.caringbridge.org/visit/johngrable

Devin Reid was a young man who defeated the rhabdo beast at least twice and a secondary leukemia caused from treatment. Devin became a "Rhabdo Angel" on 1-6-09. Please pray that his family gets the strength to heal their broken hearts.

www.caringbridge.org/visit/devinreid

Archie Wilson and family lost their 18yo son Alastair on New Years day to the Rhabdo beast. They are from Sydney Australia. As Archie states, when will this ever end. This cancer is so relentless on so many.

Of course there are many families in various stages of distress/healing with this cancer as well as many other childhood cancers. They stay the course and show so much courage when their worlds have been turned upside down. I hope (more often than not) that I can continue to not sweat the small stuff. My problem is as well as many others is that this cancer scares the living daylights out of you and now you start to lean towards an attitude of indulgence for your kids rather than the proper perspective which I think is usually a heavy dose of no. Love abounds of course and is what remains steadfast in all of this. I wish that these families could have their angels walk through the door but unfortunately we are left behind to make the most of our changed worlds. I can tell you that if you ever need stories of hope and courage that will uplift your spirits please visit any of the sites or blogs that these families use to convey the status of their lives and loved ones.

Here is to 2009 which will unfold before we know it. We are still here and all together, this makes it the best year ever for us and we are thankful and humbled for each day that unfolds that way.

Love,

Kevin, Paula, James, Zachary, Gage and Sierra (thank God for the girl because boys seem to want to kill you slowly where with girls I think it will be much faster).

Zach McCulloch Update - 12/25/2008 - We hate this stuff. What can we say?

2008-12-25T22:34:00.000-06:00

Zachary is doing fine and recovering from his surgery in rapid fashion. We had a very nice Christmas and I think the highlight was Christmas Eve service with all 6 of us together and reaffirming what Christmas is all about. We are all together for the holiday's which only magnifies how lucky we are.

Now for some very sad news. One of the most inspirational rhabdo cases around. Diego Fuentes received his angel wings yesterday. This has subdued our enthusiasm during this holiday. Diego's parents are incredible and Diego could not have asked for anyone better to see him through this short period on earth. He is in the arms of Jesus right now and celebrating his birthday. An invitation we all want but never too soon. Here is his website link. Please, leave prayers: www.caringbridge.org/visit/diegofuentes

This is another example of how relentless this cancer is for children stricken by it.

Love,

Kevin, Paula, James, Zachary, Gage and Sierra

Zach McCulloch Update - 12/10/2008 - Blessings Continue!

2008-12-10T15:45:00.002-06:00

Right now I have Roy Rogers singing "We're Back in the Saddle Again" running through my head. We could not get all of Zachary's scans done until yesterday but we do have the results. The coveted No Evidence of Disease has been offered to us and we feel blessed. God hears everyone's prayers as we feel them as well.

We love sharing this news with everyone BUT (and it is a very big BUT not SIR MIX ALOT big "I can't deny" but big none the less.) This is the second time we have been awarded the coveted No Evidence of Disease or NED for short. We then were awarded the, you have relapsed award thus canceling out the first trophy. We are glad now to have the upper hand and have learned from our first award to forever be on watch. We can never fully relax but we all know that this is what we go through this barbaric process for. It is a tough award to win but needless to say we have done it twice.

Today we are sitting at Loyola Hospital in the surgery waiting area. Zachary is having the reconstruct of his head, neck and stomach done today. This is a happy day. Returning Zach to closer to whole than he has been for what seems like forever. There you go we are blessed again. We know so many of you, nay all of you that follow Zach through this journey rejoice in our news. Right now he has been in surgery for about an hour and everything is going to plan. We pray the God guides the surgeons hand and fills him with the spirit of excellence and purpose.

We pray that this also happens for all the other families that have loved ones that are facing long odds. Lives change no matter what there is no going back to a world that is carefree.

Prayers for everyone and we will update again soon....

Love,

Kevin, Paula, James, Zachary, Gage and Sierra (the one who single handedly keeps 3 goofy brothers in check)

Zach McCulloch Update - 12/1/2008 - Winter is almost here!

2008-12-01T20:12:00.002-06:00

Winter is almost here

We had a wonderful Thanksgiving! We were all together along with other family and friends and it does not get any better than that. Zach continues to eat everything he can in anticipation of his surgery next week. We are trying to fatten him up just like Hansel and Gretel.

Zach has his 3 month scans this Thursday. Of course we will suffer from scanxiety somewhat until we hear results but tomorrow has not unfolded yet so why should we worry about something that is not here yet. CT of the chest, MRI of the head and a complete bone scan.

Please say special prayers for Diego Fuentes, Matthew Meiner, and Jeremy Campus for healing and strength. Clear scans for Ashton Miller. Most of all please say a prayer to the heavenly father for all of the families left behind for now as their loved ones have gone on to become rhabdo angels. I know that prayers for comfort would be heard. There are many that continue to help others who have not lost love ones yet by giving of themselves and their experience.

There is no better way in my mind than to honor their loved ones than continuing to be inspirational to others even though their own hearts have been broken.

Best,

Kevin, Paula, James, Zachary, Gage and Sierra

Zach McCulloch Update - 11/15/2008 - Done (for now)

2008-11-15T11:41:00.003-06:00

Zachary is definitely full of himself right now and rightfully so. We have just finished 53 weeks of chemo since relapse. Zachary has now gone through 2 protocols for treatment (original diagnosis March 2006 and relapse September 2007) numerous surgeries and many radiation treatments. He was in tears last night as it was very emotional for him to have made it through another treatment course. He really hopes that some "normal" will return to his life sometime after the first of the year.

There are only a few weeks rest though, as Zach is scheduled to have reconstructive surgery on December 10th. We expect that he will be laid up for a week in the hospital then continued healing at home after.

Healing will take a long time though. After almost 3 years of treatments one does not just magically recover (if ever). We also will enter some sort of combination oral and IV chemo program at lower doses so that we can hedge our bets against the return of this beast.

We are so proud of you Zachary. Your desire to live and take what life has to offer is truly amazing. I want to thank all family, friends, co-workers and the other rhabdo families for their support and insight.

I also want to thank God for the blessings he has shown. Perhaps the blessing is that Zachary was not taken away from us as many children are that suffer from this awful cancer. We have him with us almost 3 years later. It is much better to live during this time as opposed at the turn of the century where these things were a 99% death sentence. We know there are no guarantees in life for any of us. We have learned to appreciate each day for whatever it has to offer.

Life will never be the same but it still has plenty to offer. We also will have MRIs, CTs and blood tests to help evaluate if we have indeed eliminated this cancer. We have been told there is no cure only remission (that hopefully lasts for another 60 years).

Please see the updated photos from this past Tuesday. Zachary at a concert celebrating this last week of chemo. We actually gave him his irrinotecan in the car on the way home from the venue.

We have much hope for Zach's future as well as our own.

We love everyone and again Plainfield you have our heart (as well as a sizable real estate tax).

Love,

Kevin, Paula, James, Zachary, Gage and Sierra (man is the girl cool).....

Zach McCulloch Update - 11/2/2008 - 2 weeks to go

2008-11-02T20:35:00.001-06:00

We now enter 2 more weeks of vincristine on Mondays followed by irrinotecan for all week long. Not much to say other than we worry like all the cancer families. We know that this is the correct path and have faith that we have made the right decisions. When the monster comes into your room you want to move quickly to get rid of it. So regardless of where we stand during the next round of scans next month we will not be discouraged. We have thrown the foe out of the room and realize that it will try and get back in the room if we do not keep watch.

Halloween was fun, all the kids were here with us.

Thank you family friends and neighbors. We love you Plainfield for your heart.

No day like today....

Love,

Kevin, Paula, James, Zachary, Gage and Sierra

Zach McCulloch Update - 10/26/2008 - 3 Weeks To Go!

2008-10-26T12:38:00.004-05:00

Zach just finished 2 straight weeks of Irrinotecan (with a Vincristine push) Man I tell you what. This man is tough!! He is worn down, but refuses to let it keep him down. You will see Zach out and about in the community almost everyday, even though he feels lousy. Say hi when you see him. He has been at most of the Plainfield North High School football games this year. Sundays are for the Chicago Bears (sorry Zach, bye week, maybe you can put away the lawn furniture).

Zach now has a week off and then will do 2 more weeks of the aforementioned chemotherapy. This is the end of this protocol, as the FRENCH say FINIS (or is cest dommage?).

We look forward with much anticiation for December then. This is when more surgery occurs. This is the reconstruct. I think Zach is gorgeous no matter what but we know that this is necessary.

Not much more to say.

We pray for all the families that have lost their loved ones over these past few weeks. Danny Zabicki http://www.carepages.com/carepages/dannyzab and Elizabeth Doxey http://www.caringbridge.org/visit/elizabethdoxey.

We pray for our pirate buddy Diego Fuentes http://www.caringbridge.org/visit/diegofuentes

We pray for Jakob Aldrichhttp://www.caringbridge.org/visit/jake (who is using the maintenance protocol that Zach starts next year).

Extra special warm wishes this week to Jeremy Campus http://www.carepages.com/carepages/JeremyCampus9 and Team Meiners (Amy & Matt) http://www.carepages.com/carepages/TeamMeiners. These are our Chicagoland heroes that give us hope and inspiration.

We have not forgotten everyone else, there are so many we thank for the strength to keep going.
Thanks to the heavenly father for his guidance and showing us that blessings occur every moment of everyday.

Love,

Kevin, Paula, James, Zachary, Gage and Sierra

Zach McCulloch Update - 10/13/2008 - New week same ol same ol

2008-10-13T16:35:00.002-05:00

Just a quick update. Zach starts chemo this week which begins (we hope) the last 4 weeks of chemo for this protocol. We look forward with much anticipation to having this finish and begin to get Zach back on a path of "normal". We have been told without a doubt that there is no cure only manage the condition and hope for the best.

Considering all the news over this past week of young people dying from this cancer as well as those that look to be with the heavely father soon, we look at this as positive news that we can hopefully "manage" the conditon.

Thanks everyone for your support we would never make it through many days without the acts of kindness and prayers.

Love,

Kevin, Paula, James, Zachary, Gage and Sierra

http://www.carepages.com/carepages/SublimeLBC

All things considered - Zach Update - 10/6/2008

2008-10-06T20:41:00.001-05:00

All things considered

Zach chemo delayed 1 week due to low platelets. We will proceed at home next week. Other than that nothing to report and will update later.

Thanks for all the prayers and messages of support.

Kevin Paula James Zachary Gage Sierra

Zach McCulloch Update - September 20, 2008 - Today is the Greatest

2008-09-20T09:54:00.004-05:00

Today is the Greatest

How can I explain what Zach’s cancer has done to change our perceptions in life? It has helped define love way beyond the scope of comprehension that we had in 2005 BC (before cancer). I Love You has always been part of the language, but it has taken on a deep and profound meaning when you find that someone you love is potentially not going to be here to receive your love or to return it. Love is more than affection, attraction, tenderness or calling someone sweetheart, honey or dear. It is what remains and is constant no matter what the time and place if you make it so. When you see that everything you have in your life could potentially go away then what is left? Love! And when you finally realize that love is what remains, then guess what? You actually realize that Love is enough! Not money, not possessions, not someone else’s life. Stopping and giving of yourself the best that you can do. Love remains forever do not be sad at what might have been, be happy for what is.

Do I HATE? Absolutely! I hate this cancer and what it has done to the emotional and physical well being of our son as well as our family and friends. I loathe this. I see many young children besides Zach, which seem to come wave after wave with their ports and IV poles and their bald heads. We have been privy to a view that we hope no one sees in their lifetime. Parents that have an unoccupied look in their eyes, you know, the I can not believe this is happening to us look. Eventually though, parents realize that they are keeping a prime directive (see ROBOCOP, this really does pop up in your vision) to see their children through when they are scared and protect them. This is the spark that catches on. They spend more time with their loved ones, listen to them when they speak (intently), show a consistency of always being there (Paula has been with Zach every step, he wakes up there is MOM) and finally EVERYDAY tell your family that you love them (this easy go ahead and do it).

Still with all of this going on, I wish that there were more hours in everyday, more days in every week and more months in every year so that we can all be together longer. Zach has a cancer that can not be cured. It can only be beaten back. Remission or the coveted NED (no evidence of disease) is part of what can be managed and then a hope for a cure someday. This is a cold reality yet again love comes into play and is the spark that keeps us going. We still are in the world, we still have our family. Sure we are a bit battered but we have all stood against this fiend and have found that our love has withstood this as well.

Prayers go out to Lynn Doxey and her beautiful daughter Elizabeth our hearts break as we hear the news that this cancer is being relentless. Please pray for them the link below to leave messages of support.

http://www.caringbridge.org/visit/elizabethdoxey

To the Campus, Meiner, Turcotte, Fuentes, and Zabicki families (and many others of course) we send love and prayers your way. Each of your situations we draw strength and hope from.

Love,

Kevin, Paula, James, Zachary, Gage and Sierra (thank God for the girl).

Zach Update - September 15, 2008 - Last Planned Week

2008-09-15T18:14:00.001-05:00

Today Zach goes in for a full week of chemo and Paula will be there with him. According to the schedule associated with the protocol, this will do it for planned hospital stays. Zach has stayed the course and will continue to do so. We are so fortunate that we are still able to go and have this treatment once more on our journey for life. We have great hope for the future but will remain forever on guard. We will work life around this and make the best of everything.

Love to all,

Kevin, Paula, James, Zachary, Gage and Sierra

Zach McCulloch Update - September 4, 2008 - Zach Scans

2008-09-04T18:34:00.003-05:00

Zach Scans

Just a quick update...

As we near the end of this round of treatment we are grateful to the heavenly father for blessing us with excellent results. Zach had 3 scans today and everyone came back with flying colors No Evidence of Disease...

We still have 10 weeks to go but the progress is what one hopes for. This cancer never relents. It's ability to find new ways to manifest itself is truly incredible. We will never fall asleep at the wheel when it comes to keeping this out of our son's body and out of our lives.

Although we have heard this news before during Zach's first battle we are relieved. The difference is that Zach is now going to finish the remaining treatments and then switch to new protocols that involve maintenance of this condition.

Zach wishes he did not have to do anything but we also know that this cancer takes no prisoners and in order to keep it from recurring he will move to taking chemotherapy in low doses via pill, in conjunction with a push (through his picc line but ultimately a port. This means the ability to get back to the new normal after a reconstruct of his head as well as his stomach area that they removed fat and muscle from his last operation which removed the cancer the best they could as well as form an organic seal.

We look at this new phase as being no different than someone that treats diabetes or heart problems. Many need to take medicine to maintain a quality of life. For Zach the hope remains that a cure comes along while dealing with this "chronic" condition. Scans every three months for the foreseeable future.

Anyway we pray for those still facing this battle that they get the type of news we are fortunate to get. We are tempered by the fact that others have lost loved ones or are still having all of the collateral damage continue. This is most draining. We will never be the same again mostly in good ways... This of course is not ever going to be over but rest may be something that can occur.

Love,

Kevin, Paula, James, Zachary, Gage and Sierra

Zach McCulloch Update - August 20, 2008 - Zach on the attack

2008-08-30T09:38:00.002-05:00

Zach on the attack

As we head into another Holiday weekend we are grateful that we still have treatment and hope. Zachary has been having fun with friends and family. This morning we are all going to watch his brother Gage play his first football game for the Plainfield North High School freshmen football team (where does the time go) it seems like only yesterday he started playing the pee wee football. He is hardly pee wee anmore (I am not sure he was pee wee when he was playing pee wee but I digress). What I am saying is what a great day that we have unfolding and as I dare to think about the next few days quite possibly the best Labor Day weekend ever. Sunday we get to gather with many of our favorite friends (we love them all) for a first annual pig roast. The pig does not stand a chance when my boys and I take a crack at it. Not sure how we get to the babyback portion but we will figure it out. Hard to believe how much enjoyment we have gotten out of Arnold on Green Acres, Miss Piggy on Sesame Street and of course the pig called Babe but still, we will eat their distant relative with plenty of barbeque sauce.

Zachary has a full set of scans next week. Mri of the head and neck, CT of the chest and then a bone scan. Please pray that this has not progressed into any other area of his body and that we weather this scanxiety well. Zach was also informed that his chemo treatment will not end in November as we had all originaly hoped for. He is going to go on a maintenance program that could go on for 1, 2 or even 3 years. I can not say that we are thrilled by this message but if it continues to keep this voracious killer at bay and God willing it will extend his life and snuff this out then we will plan to make this part of our daily lives. Zach will get his reconstruction sometime the begining of next year as well.

As the last part of this post I ask that everyone pray for all the cancer kids but right now immediate attention needs to drawn to Danny Zabicki. He needs prayers from as many people as possible to have the heavenly father shine his grace for healing upon him. His page can be read right here at this same site Zach is bloged at. Just put in dannyzab. He has a Bite Me Cancer Army that is easy to become part of just one little prayer and you are in. This kid is really a tough one and an inspiration to all!!! Please send the prayers to the Left coast.... dannyzab is the carepage site

We will post again later...

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

http://www.carepages.com

Zach Update - August 23, 2008 - These are good days...

2008-08-23T17:50:00.003-05:00

These are good days...

Here is a thought:

Happiness is not a destination, you can not buy it, you can not eat it and you certainly can not make it in some lab. Happiness is an experience that comes from knowing that you try and live every hour of everyday expressing your heart that should be filled with gratitude, love, charity and kindness.

Zach has been hanging with friends and continues to operate as if the world is his for the taking. He never complains, takes all the steps that are necessary and hopes that his final outcome will be a long and happy life.

He goes in for chemo again this Monday for an overnight stay. This is the last time that he will have to put up with Doxorubicin "the red devil" as part of this course of treatment. If you wish to see what any patient has as potential side effects and they are numerous, just google the name. This particular chemo always comes back to haunt Zachary the following week (WEAK) and makes him very sick.

Last night he returned to his old High School to watch his brother Gage play fotball (sorry Zach you missed by an hour) with the freshmen class for the annual boosters night/ sports awareness evening. I guess he had a great time as during his senior year he did not get to see any football of any kind and he knew many of the juniors who are now seniors this year as well as a number of the Plainfield community who had not seen him all summer.

What a great week again we are all together still and enjoy each other tremendously even when the kids are making less than spectacular choices sometimes.

We are grateful again for the compassion and concern shown by my co-workers (so many I can not name them all here), our neighbors (thanks again how do we ever give back all that you have given?) family (who knows us the best yet still loves us anyway ha).

And a specal thanks to the rhabdokids members and others that have been on this journey and did not receive the results they wished yet still find some way to fight through their broken hearts to help and support as well as thoose that are still filled with hope right until the end, never giving up.

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

Zach is Back - August 13, 2008

2008-08-13T18:28:00.003-05:00

Zach is Back

Back in the hospital that is.. He had to go to emergency yesterday because on netropenic fever. He has an infection in his throat that they are going to eliminate. He has been given blood and platlets. The red devil strikes but could not take us out.

We have had several talks and decided that the word Cancer is now being changed to (yes I) CAN SIR. This will be trademarked under mcculloch industries read the fine print please when using. This is our threepeat expression (HA HA).

Hope to have Paula and Zach home by Friday. It is disrupting as hell but we understand that this is part of what (yes I) CAN SIR offers.

Love to the whole world.

I plan on reviviing the bedins from the 60s and 70s when this is all done so start singing All we are saying is give Zach a chance!!!

Kevin, Paula, James, Zach, Gage and Sierra (THANK GOODNESS FOR THE GIRL!!!)

Zach Update - August 4, 2008 - 8:30 AM

2008-08-04T10:32:00.002-05:00

Planned Hospital visits down to 3

Zachary and Paula are heading down to the hospital for a one night stay. This chemo is nasty business. Lets just say they call it the red devil and it is most disagreeable for Zach. We will update later in the week.

It was a busy 5 days. We celebrated Sierra turning 12 (what a beauty and smart) and James turning 20. James is our first and it seems just like yesterday that we started our family. He is no longer a teenager. We have much hope for him to lead the way through deed and actions and fulfill the promise of being a wonderful man in his own right. There is so much choice for young adults and it seems he is starting to make some good ones.

Thanks again to all of our friends. You have made something more bearable through your acts of kindness and love. We love all the meals being brought by but want to give a special shout to the Yost family. This weeks meal was wonderful and certainly unexpected that one could grill so perfectly and then deliver the perfection.

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

Zach McCulloch Update - July 26, 2008 at 01:14 PM CDT

2008-07-26T22:04:00.001-05:00

July 26, 2008 at 01:14 PM CDT

Zachary (you are the toughest man I know and have taught me to be the best man I can be)finished 2 straight weeks of irrinotecan with a vincristine push on each Monday. We now have 14 days with only the once a week hospital visits to check blood counts and make sure he is strong for the next chemo on August 11th. We stay the course and hope soars as we still have treatment options available but expect this course to give us our best results which would be NED (no evidence of disease)

This morning the 6 of us went to see the Dark Knight at the theater. These are indeed good days. NO DAY LIKE TODAY! It was 5 bucks a person at 9:30 AM and we really felt like we had our own private screening. We shared a bucket of popcorn between the 6 of us. We were not in the theater longer than 5 minutes when I had to go back out and fill the bucket again. We actually filled some brown bags that we brought (lunch sacks) so we did not need to pass the bucket back and forth. I know it is cheap of us but what can I say. We figure what is the difference they will refill the one bucket all we want and this worked. The staff looked at us like we were some sort of animals when we came out 10 minutes later and the movie had not even started yet. I did get everyone their own soda. Popcorn is the breakfast of champions.Maybe next time we should bring the big brown bags they give you at Kroger or Piggly Wiggly and see how much we could bring home for our neighborhood.

I ask that everyone prays for the Doxey family. They have been in treatment for their young daughter Elizabeth and while in treatment tumors came back in several areas and much larger than what was originally removed and treated. They have not given up hope for a miracle and a grace that we ask the heavenly father to grant. This is the link for their story. The Mom is incredible, LOVE never dies or gives up. We thank them for their strength as well... http://www.caringbridge.org/visit/elizabethdoxey

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

Zach McCulloch Update - July 14, 2008 at 12:02 PM CDT

2008-07-14T20:51:00.001-05:00

July 14, 2008 at 12:02 PM CDT

New chemo week and Zach is up for the challenge. 15 more weeks to go which will put us into the second week of November.

Thanks everyone for their prayers. I want to thank friends, neighbors, Plainfield Community and family of course but want to also thank the company I work for again for supporting us as well.

Zach Update - July 03, 2008 at 09:10 PM CDT

2008-07-03T22:07:00.004-05:00

If it is a holiday then that means Zach will be spending it in the hospital.

Paula and Zach checked in today around 1:00 PM. Zach broke the magic threshold for fever which is a temp of 101 or better (now netreupenic) so we had to admit him. Also feeling very rundown and some unexpected bleeding (that is being fixed as well). He was at the hospital yesterday for his weekly check up and the chemo had not quite caught up with him. Now he is back again and we have a tune up so he can be ready for his next round of chemo which starts on the 14th.

So far they have been pumping him full of antibiotics as well as giving him blood and or platelets. Hopefully we will have Zach feeling like a champ and back home by Sunday night. I also miss Paula already.

Paula hopefully will get to see the fireworks from downtown tonight. I understand that Loyola has a rooftop view that would be considered one of the best as well as mosquito free.

Prayers please for the Sadjeks for their recent loss of a loved one as well as for a brother to heal soon. Prayers to the Kellys as well as they have a loved one that is sick as well.

Wow life catches up with you but it is the difficult times that make us recognize the good moments in life and cherish them even more.

Love to all

Kevin, Paula, James, Zachary, Gage and Sierra

Zachary McCulloch Fund Raiser - Jewel Shop & Share - July 1, July 2

2008-06-30T21:43:00.003-05:00

By shopping at Jewel Food Stores June 30, July 1 and July 2, your donations will go directly to the Zachary McCulloch Benefit Fund which has been set up to assist the family in paying Zach’s medical expenses.

Click here for the flyer:

Zach McCulloch Shop & Share Coupon

Direct donations can be made at National City Bank located on 135th Street in Plainfield.

Zach's Story

Zachary McCulloch, despite his third year in his battle with cancer, graduated from Plainfield North this past month! Zach was stricken with a rare form of cancer called Rhabdomyosarcoma. This cancer is diagnosed in approximately 350 children each year, the majority under 6 years of age. Teenagers and adults would represent about 40 of this total a year (rarest of the rare). Rhabdomyosarcoma is a highly malignant and relentless cancer.

Zachary is now going into his third year of treatment. You can read Zach’s story along with many others by going to http://www.carepages.com/

The family recently reached Zach’s lifetime deductible. However, thanks to the efforts of some co-workers, they found another insurance company to help cover Zach’s continuing medical expenses.Many thanks for sharing this with as many of your friends as possible!

Any other fund raising ideas can be sent to Kathy Lopez at kathylopez@comcast.net.

Zachary McCulloch Fund Raiser - Jewel Shop & Share - June 30, July 1, July 2

2008-06-29T18:47:00.002-05:00

Click here for the flyer:

Zach McCulloch Shop & Share Coupon

Direct donations can be made at National City Bank located on 135th Street in Plainfield.

Zach's Story

Zachary is now going into his third year of treatment. You can read Zach’s story along with many others by going to http://www.carepages.com/

Any other fund raising ideas can be sent to Kathy Lopez at kathylopez@comcast.net.

Zach Update - June 25, 2008 at 08:48 PM CDT

2008-06-25T22:46:00.000-05:00

June 25, 2008 at 08:48 PM CDT

Perhaps a seizure is a blessing? Is that crazy? Because of the seizure yesterday they were running test that were not scheduled until after the last chemo would be administered.

Here is what we know now. Zach does not have any additional tumors or growth in the area where the second surgery was performed (Brain, Head and Neck). This may be the blessing part because it helps relieve the anxious moments that come from wondering if treatment will be for not or if it is truly working. The weight of worry is not a burden that God wants us to have after all, that is a burden that he will take from us to help through this life before the eternal one.

What I like though is the medical staff says that he is as healthy as can be (given the circumstance) but he may have a seizure in the next hour, next day, next week, next year or never again! Can you believe that so when worry creeps back in it is moments like this that make us remember that we can not regret yesterday because it is gone. Stop obsessing and worrying about tomorrow it is not here yet so what can it do to you. Tomorrow holds the same promise that today did and that is another day together with loved ones, friends and community. Zachary will now want to listen to Bob Seizure while driving to Little Seizures for pizza and a seizure salad (I can hear him now).

Right now I am going to go hug my daughter Sierra because I think that she is so beautiful and bright. I think I let her know that but am making sure right now.

Emily Barger passed away today (7 years old) fighting until the last breath was drawn. Another child lost to Rhabdo. Her parents have been an inspiration as well as Emily herself. We pray for comfort during this time of loss and understanding as well as the mending of broken hearts. www.carepages.com page name EmilyBarger

I also do not mean to just post the loss that seems to be going on with a frequency that is too much even when it leads to one life taken. There are many stories of families that have worked and beaten this cancer back. These families like ours could not do it without the support shown over and over again by family and friends but by those also who are part of the Rhabdo community.

I truly believe that the Beatles were right when they sang "And, in the end, the love you take/ Is equal to the love you make.” Giving love and receiving love is really what life is all about. The messages left today (and other days) are incredible and keep our family strong.

Love,

Kevin, Paula, James, Zachary, Gage and Sierra

Zachary McCulloch Fund Raiser - Jewel Shop & Share

2008-06-24T22:44:00.010-05:00

Click here for the flyer:

Zach McCulloch Shop & Share Coupon

Direct donations can be made at National City Bank located on 135th Street in Plainfield.

Zach's Story

Zachary is now going into his third year of treatment. You can read Zach’s story along with many others by going to http://www.carepages.com/

Any other fund raising ideas can be sent to Kathy Lopez at kathylopez@comcast.net.

Zach Update - June 24, 2008 at 08:05 PM CDT

2008-06-24T22:26:00.000-05:00

June 24, 2008 at 08:05 PM CDT

Zachary just had a seizure not more than 40 minutes ago and was non responsive for about a half hour. They are going to move him to a step down unit to monitor him more closely for the next few days as well as give him an MRI tonight. Zach is aware and seems fine but he has an intense headache where they operated so they are going to start to rule things out until hopefully they can find what was the cause. I assume that they will discontinue this round of chemo as well because it has been known to cause seizures.

We will keep you all posted on the results of the MRI. I am sure that I do not need to tell you that we will be very anxious until the results come back. Not only to find out the cause (gee maybe cancer?) but hopefully rule out any additional spread of the cancer at least in the brain, head and neck.

Seems like we are always asking for prayers but a few extra would not hurt.

Paula...thanks for being so strong. Friends, family and co-workers thank you as well.

Love,

Kevin, Paula, James, Zachary, Gage and Sierra

Zach Update - June 22, 2008

2008-06-24T22:25:00.000-05:00

June 22, 2008

It has been a really nice 3 week run since Zach had his last Chemo. He and his mother will be going in for Zach's treatments with Etoposide, Ifosfamide and Mesna. This combined with any other pain medications and antibiotics will be administered all week long. We will miss them during the week but understand that this is part of the plan.

Sleep has become something that seems more difficult rather than easier. With the economy turning so poorly right now and friends and family members losing jobs as well as homes it puts additional stress on the whole community.

I believe that God continues to test all of us so that we continue to recognize blessings that we have as something that should not be taken for granted. We know that we will find a way to finally put this behind us hoping that it is not God's plan to take Zachary from us just yet (but it is in the heavenly fathers hands).

Please pray for those that are having difficult times and especially those that do not know how to navigate some very interesting and troubling times piling on health concerns for a loved one actually ratchets up the pressure so we need for good things to happen to everyone.

Love,

Kevin, Paula, James, Zachary, Gage and Sierra

Zach Update - June 01, 2008

2008-06-24T22:23:00.001-05:00

June 01, 2008

Zachary graduated from Plainfield North High School yesterday. Thank you Stacy, for tutoring Zach at home and encouraging him to work despite being so ill that focusing on something else other than his condition was a tough task his graduation was a milestone set back when he was first diagnosed March of 2006. Pictures soon!!!!

Zachary congrats on the effort that you did to make to have this happen and Paula for being the mother that God gave him. I am amazed at your own tenacity and fierceness to heal this son of ours and keep him whole (thanks).

Thank you so much to Nurses and Doctors at Loyola, Dr. Manera, Gail and Mary Lou, Dr. Zender, Dr, Hemmingway, Dr. Origitano, Dr. Vandevender, Dr. Melian (from a group of compassionate and wonderful doctors that are special you are extra) Dr. Omi and Dr. Bonwit.
Walkers Grove and the families that bring us compassion and hope through food and just being there we love you all.

Prayers are needed all the time but these Rhabdo families need special prayers:

Danny Zabicki with some emergency surgery yesterday. Let’s pray the medical staff was skilful and what they found could be eradicated and of course for quick healing. http://www.carepages.com/dannyzab

Gail and Josh 31 days in the hospital and counting pray that the little things that continue to show healing are truly that and they are on the way to recovery.

Ali and Angie, this beautiful little lady has been through so much we want healing from the surgery and continued eradication of any cancer left.

http://www.caringbridge.org/visit/aliyahlavengood

Diego Fuentes for clean scans http://www.caringbridge.org/visit/diegofuentes

Ashton Miller for clean scans http://www.caringbridge.org/visit/ashtonm

Dylan Turcotte (check him out you will love this guy!) for a skillful surgeon
http://www.caringbridge.org/visit/dylanturcotte

More to come

We have been blessed again by this normal expectation in life and it is all that much sweeter.

Love

Kevin, Paula, James, Zachary, Gage and Sierra

Zach Update - May 26, 2008

2008-06-24T22:22:00.000-05:00

May 26, 2008

Zach is doing as well as can be expected. This last course of treatment did take a lot out of him but he now has a week off until a 1 or 2 night hospital stay the first week of June. The 1st of June will mark the begining of 6 more months of treatment.

We take this as a blessing, 4 other families aproximately the same age as Zach and one other family with a daughter about Zach's age have all passed away over the past 6 weeks. All of these sons and daughters were diagnosed within the same time frame give or take. Zachary almost a full year before 3 of them. This reminds us of how fortunate we are to have our Zachary and that hope continues.

Heavens newest angels are Jordan, Josh, Stephen, Kierston and Michael. I can only tell you that all these children gave and recieved so much love from their families and friends. We know you were here because of this love and you will not be forgotten. Thank you for sharing your hope and healing with all of us.

We leave our troubles at the doorstep and remember that life is joyus and that times like this make the ordinary and good things that much sweeter.

Love to all,

Kevin, Paula, James, Zachary, Gage and Sierra

Zach Update - May 15, 2008

2008-06-24T22:20:00.001-05:00

May 15, 2008

Quick update:

Zach is back in the hospital as the irrinotecan (chemo) has made him very sick. We hope that he will be home this weekend. He went in to the hospital yesterday morning.

I work for the best company ever. Just when we have been told that our insurance has met the life time limit for Zach. The folks that own and run Lang Holdings where I work have found Zachary insurance to continue this journey of treatment and hope. We will be without insurance for a short period and responsible for treatment but I do say it is nothing that can not be worked out and or negotiated. No healthcare provider has indicated that they will stop treatment. My fellow employees also took to various fundraising activities and donated generously of their time, treasure and talents (the biggest of which is opening their hearts) to help Zach as well.

Many families need prayers but these 3 mostly right now.

To Bonnie (Mother) and Brianna (wife) to Jordan who passed a week ago and has been laid to rest. Pray for strength to make sense of it all and carry on plus mend the broken hearts.

Josh Anguiano for a miracle as he waits for something other than to be taken by the heavenly father and for his Mother for the strength to wait and watch.

Stephen and his mother Sheryl who also need a miracle and strength to sort out the news of a prognosis that gives very little hope.

We need a miracle as well.

All of these young men were diagnosed with Rhabdomyosarcoma in the past year and have fought as valiantly as possible. One is our angel now with the heavenly father the other 2 we are holding out hope.

Love

Kevin, Paula, James, Zachary, Gage and Sierra

Zach Update - April 28, 2008

2008-06-24T22:02:00.000-05:00

April 28, 2008

Hi everyone,

Unless something out of the ordinary happens Zachary is not scheduled for any overnight hospital stays until June 23rd. However, we have learned that with cancer there is nothing ordinary. We look forward to continuing the course of treatment whil Zach is at home.

Irrinotecan will be the next round of chemotherapy. Zach will try to continue his schooling this week. He ultimately just hopes to walk with his classmates at the graduation ceremony but knows he has a lot of work to do.

We continue to be amazed by the blessings we recieve from our neighbors, friends and community. We need them and appreciate them.

We pray for others that are worse off than us. No day like today!

Love

Kevin, Paula, James, Zachary, Gage and Sierra

Zach Update - April 21, 2008

2008-06-24T22:00:00.000-05:00

April 21, 2008

Zachary has gone back into the hospital today. This is part of the plan for the continuation of his treatment. Although we did not get to spend the full two weeks between his last chemotherapy and the start of this round totally out of the hospital many wonderful things transpired during this 2 week period. First and foremost was that Zachary was given every opportunity to recover so he could weather this weeks onslaught of ifosfamide IV over 1 hour and etoposide IV over 1 hour for each day with Mesna to try and protect the bladder and liver functions. Hydration, blood draws and heavy doses of antibiotics. We hope to see Paula and Zach this next Saturday morning at home.

There was a fundraiser held at the local Culver's restaurant in Plainfield, IL. All I can say is that it was the first one that we have been a part of for the benefit of Zachary and the response was overwhelming. The owner of Culvers, Brian, said that they were the busiest they have ever been bar none over the 5 hours the benefit was held. People gave generously of their time whether waiting for food (an hour wait for the most part inside and drive thru) or helping to serve the many family and friends that came to support us. Many stories were shared by survivors and of course stories of those that fought courageously and are now our ANGELS on this journey (we cry). We estimate that there was well over a thousand people that attended either inside or drive thru. These people also gave financial resources either through outright cash donations (every penny was so important) or their purchases for some yummy Culvers food.

The number of people to thank is too numerous to type here but let's start with Tiffany, Karen, Kathleen, Laurie and Alice. Dan Sadjak and your generous heart (Walkers Grove FF). My buddies Brad King (never a more honest or lovely individual anywhere anytime) and Mike V (one of my oldest friends and another fine human being). Plainfield North PTSO and your generous gift. Megasports uptown. All of my neighbors in Walkers Grove but most importantly the people of Plainfield. How do I thank you all for this support? The need is still great but even if another dollar was never raised you have taught us much by holding our family in you prayers and in your heart. I am so proud to be part of this community. We are so blessed that Zachary sees that many are on this journey with him and us in the best ways they know how.

This cancer is rare and it is relentless. Treatment offers hope for a long term prognosis better than just salvaging any time we can.

We have our son for this day thank you Plainfield.

Prayers for the rhabdo kids around the world but also anyone suffering from some hardship, financial, emotional, health issue, missing person.....

Love,

Kevin, Paula, James, Zachary, Gage and Sierra

Zach Update - April 15, 2008

2008-06-24T21:59:00.000-05:00

April 15, 2008

HAPPY 18TH BIRTHDAY ZACHARY WHAT MORE CAN BE SAID!!! WE EXPECT MANY MORE BUT OUR GRATEFUL TO CELEBRATE THIS MILESTONE TODAY.

Lines form on my face and hands
Lines form from the ups and downs
I'm in the middle without any plans
I'm a boy and I'm a man
I'm eighteen
and I don't know what I want
Eighteen
I just don't know what I want
Eighteen
I gotta get away
I gotta get out of this place
I'll go runnin in outer space
Oh yeah
I got a
baby's brain and an old man's heart
Took eighteen years to get this far
Don't always know what I'm talkin' about
Feels like I'm livin in the middle of doubt
Cause I'm
Eighteen
I get confused every day
Eighteen
I just don't know what to say
Eighteen
I gotta get away
Lines form on my face and my hands
Lines form on the left and right
I'm in the middle
the middle of life
I'm a boy and I'm a man
I'm eighteen and I LIKE IT
Yes I like it
Oh I like it
Love it
Like it
Love it
Eighteen!
Eighteen!
Eighteen!
Eighteen and I LIKE IT

WE WANT TO THANK FAMILY, FRIENDS, CO-WORKERS AND THE MEDICAL PERSONNEL ESPECIALLY THE NURSES FOR EVERYTHING THAT HAS BEEN DONE TO HEAL AND COMFORT OUR FAMILY.

KIWANIS IN PLAINFIELD SPECIAL THANKS TO YOU AND YOUR GENEROUS DONATION TO THE ZACHARY MCCULLOCH BENEFIT FUND.

TO THE STUDENTS OF PLAINFIELD ACADEMY THANK YOU AS WELL YOU ARE GOING TO BE PART OF A BRIGHT FUTURE FOR AMERICA.

LOVE,

KEVIN, PAULA, JAMES, ZACHARY, GAGE, SIERRA

Zach Update - March 31, 2008

2008-06-24T21:57:00.000-05:00

March 31, 2008

Zachary has done the best that he could to try and recover from his long hospital stay. Although he has not eaten very much the TPN has helped maintain his nutrition levels. He had an MRI of his head and brain this past Saturday as well as an x-ray of his jaw. This will be used as the baseline for all future determinations regarding the status of his tumor that was removed from this specific area. We do not feel that anything has grown back at this point but this cancer is nasty and there must always be a watchful eye for relapse or heaven forbid metastasis. 2 bags of blood on Thursday this past week also helped Zachary feel better. Zach seems to have some searing headaches right now as he weans himself away from the pain meds.

Zachary now enters the hospital for 5 days for chemo treatment with ifosphomide/etoposide/mesna. Just more fancy words for poison. We hope and pray that he has enough strength to continue through to the middle of November with his chemo treatments

Thank you so much for all of the families that have been bringing us dinners on Tuesdays and Thursday. This act of caring means more than you will ever know. We are overwhelmed by the amount of families that wish to show they care and provide strength to us during our rough time.

We also would like to thank Culver's right here in Plainfield, IL and the family that owns and operates these wonderful restaurants for hosting a future event to be held on April 16th as a benefit to help with the medical bills that seem to continually pile up. We have tried our best to go without this financial help but going into our 3rd year of treatment has proven to be a bit tougher than we anticipated. We still feel we are better off than many others as we are still continuing a treatment plan and have much hope for a positive outcome.

National City Bank 135th street branch for hosting an account to receive and hold donations. Plainfield North High School Faculty and students for decorating our house on St. Patrick’s Day and letting Zach know that even though he is not physically with you he is in your thoughts daily.

An article also appeared in the local Plainfield newspaper called the Enterprise. Thank you so much for taking the time to try and put in editorial content Zachary’s plight.

Tiffany and Kathleen 2 angels to call out this week for taking the lead on many support activities and to everyone else, we know who you are and love you so much.

Thank you heavenly father for sending the community to us with an outpouring of love, care. and support

Kevin, Paula, James, Zachary, Gage and Sierra

Zach Update - March 21, 2008

2008-06-24T21:54:00.000-05:00

March 21, 2008

Zachary finally has decided to eat something. Please sing the following to Walk This Way by Aerosmith:

You ain't nothin until you been eatin on a muffin because it sure is to be a changing your ways, she told me to Walk This Way (sorry Steven Tyler took liberty with the words).
Zach ate 4 mini chocolate muffins and we are ecstatic. Liquid nutrition is awesome but...
Zachary is feeling better everyday. We still will have some tough days but the past few have been golden.

Zachary the moments you have given us….

Were We Really There? We remember your first breath, your first smile. We remember the first word and we remember your first steps. The loss of your first tooth and the wonder of the tooth fairy, Easter Bunny and Santa Claus when they came to visit. Your first taste of chocolate, riding a big wheel and then the big day, no training wheels on your bike, the faint but sweet voice that sang Jesus Loves Me This I Know for the Bible Tells Me So, Your first day of kindergarten, your first time on a school bus following your brother James, playing dress up with a brief case to be like Dad or kicking and chopping the other kids because you were a Mighty Morphin Power Ranger. Meeting girls, football, basketball, soccer and swimming. Long Summer days without a care in the world. Your last day of elementary school your first sleep over, your first field trip and your first day of middle school. Your first pet and your first pet dying. Your first dance, your first crush, your first kiss (we were not there). Your first call to the principal’s office. We still hear the whisper Were We Really There?

First day of high school, first high school social, first high school girlfriend. Yearbook picture freshman year that reflects a boy becoming a man. Your first start on the football team. Your first ride in a car with a friend who just received their driver license. Your own drivers license, your first rock concert and sadly your first cancer. Your first CT scan your first diagnosis, your first prognosis Were We really There? Your first surgery, your first chemotherapy your first radiation. Now you are the Mighty Morphine Power Ranger. Jesus still Loves You This I Know! Your first hospital stay, your first night in the ICU or as we know some nights the I Don’t See You! Your realization that you are now a man. Were We Really There? Courage has come to town. Idling away the days has stopped, We Are Really There.

We are honored to be your parents, brothers and sister. We hope that we have not let the days pass us by. Love could not be more abundant and has come from the ordinary moments we remember.

We will remember these things but most of all we dream of the moments yet to come that you will give us…..

Prayers go out for Josh Anguiano and his family tonight. www.carepages.com and enter joshuaanguianojourney

This day that the Lord gave his life so that we may have an eternal one. I pray that we have prepared ourselves, our children and our friends for the eternal life.

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

Zach Update - March 12, 2006

2008-06-24T21:40:00.000-05:00

March 12, 2006

Normal, I have been thinking about this word a lot lately. The dictionary defines it as conforming to the standard or the common type; usual; not abnormal; regular; natural.

I always thought that it was a feeling. Normal, when I look at my wife Paula and my heart skips a beat the same way it did when I first laid eyes upon her. Normal, calling out to Mom and Dad and they answer back. Normal, brothers and sisters that care unconditionally but also can tease me mercilessly. Normal, the friends you find along the way in life that share the many hopes and dreams that you do. Normal, children that are born and become your passion and change the way you view life. Normal, having no worries in life and taking for granted all of the many day to day activities that turn out to be blessings. Normal, I would pull my belief in Jesus out of my pocket when convenient. Normal, bad things do not happen to my family or friends. Normal, as in Illinois the most beautiful city in the world, it is where our daughter Sierra was born. Normal, spending weekends doing yard work, reading the newspaper, catching up with the family with some special plan or just being together before a new week appears and we go about our Normal activities of work and school. Normal, children that trust their parents can protect them no matter the situation. Normal, children exploring the boundaries of their own relationships. Normal, eight hours of sleep.

Normal, driving our son to the hospital for his next chemo, surgery, MRI, x-ray, scan, blood draw, check up, consultation, anxiety over medical results. Normal, seeing my son looks at us to confirm that everything will be alright. Normal, crying at the slightest act of kindness and not believing that you deserve it. Normal, going to church on Wednesdays and Sundays and honoring what truly matters. Normal, worrying that your children may precede you in death and what would a perpetual broken heart be like? Normal, De Nile ain’t just a river in Egypt. Normal, a mail box full of medical bills and having to call insurance companies twice a week to ask why they have denied a claim or not paid enough. Normal, wondering if we truly are paying enough attention to our other children. Normal, appointments with medical professionals that take all day instead of just a few hours. Normal, anxious about every little bump, bruises, headache or fever your children have and reading more into it than you Normally would have.

Normal, 2 hours of sleep each night.

I could make this list go on and on but what we perceive as normal may be the things that are our everyday blessings. Even the new Normal is full of hope to get back to the old Normal.

The best NORMAL, we brought Zachary home from the hospital yesterday (36 days I believe that he now has platinum status and can get 2 nights free at a hospital of his choice) and there are now 6 of us in the house again. This is how we get centered back to the old Normal.

Thank you God for allowing something taken for granted and showing it for the blessing that you have given.

Prayers go out for our military this week. Let’s support the job they do and hope that they can come home when the time is right.

WALKERS GROVE RULES with the city of Plainfield

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