Zach McCulloch Update - 6/20/2009 - Surgery Today 4th Time

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

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

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!

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

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?

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..

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.