This Week

Wednesday morning and the kids are at school. As of yesterday the 3 children have completed the last of their standardized tests for the year. So glad about that, the kids are too!
Jack is completely procedure free this week. I reminded him this morning that he would not have to leave school at all tomorrow, he was very happy about that. Next Thursday the 27th we will start back up on the chemo.
We are less than a week away from our "anniversary" date, one year ago as of April 25, we stood in the doctors office not believing what we were hearing. I pulled out a recap of the last year from the blog....
April 25, 2005
Leave it to me (Sarah) to start an entire blog when I have virtually nothing to write! I have created this blog to be a place to keep church family updated, as well as allow your comments to Rob, Tammy, Jack, Sophie, and DJ to let them know how much we love them and are praying for them. (Thank you Sarah)
April 27, 2005
Jack and Dr. Price are not quite yet out of surgery, but Dr. Price is closing his precious little head up. The nurse reported to Tammy that all seemed to go well.
The tumor appears to be non-malignant. There was a slight disappointment in that there were 4 small pieces of the tumor that Dr. Price was not able to get to because they were attached to the brain stem and "Jack was not tolerating her getting to them". The implications for those 4 pieces can be anything from no further problems and ignore them to needing to treat them as if they were a cancerous tumor. It will all depend on Jack's recovery for weeks and months to come. Jack will be going back to that hospital on a regular basis for a while to be monitored for that.
May 3, 2005
The brain tube is out. We just took Jack for his first wheelchair ride to the front lobby which has a huge train display. He had just been in the treatment room, getting the drain out of his sweet little head. We had 30 minutes before the nurse said he needed to be hooked back up to the feeding tube, so the neuro nurse practitioner, one of Jack's favorite people here, said get this boy off this floor and take him to see the trains. So bloody hair and all we took him down to the lobby. He liked the wheelchair ride, a bit groggy from the morphine due to the procedure, but he liked it we could tell. He will enjoy going back tomorrow. Now that he is not being monitored for brain pressure we can move him around a bit more, and tomorrow the pt will come and help us get him walking.
The neuro nurse practitioner also said that the rep. from the children's rehab facility here in Dallas would be by to speak to us tomorrow. They will evaluate Jack and decide if he can do outpatient therapy for speech or if inpatient therapy would be best. The hospital will keep us here only until Jack's feeding tube can be taken out, when he can eat. Could be another day or two, then we would either come home, or Rob and Elaine would take Jack and I to the rehab where we would live for up to 6 weeks.
This was not easy news for me to hear. As I would love to come home and hug my kids necks, and pick them up from school when they are sick, and help them shop for teacher appreciation gifts...I ofcourse want what is the very best for Jack so it could be a while until we get home. Keep your posts coming.
May 10, 2005 Move to In Patient Rehab Center
(written by Rob) We got moved over to Baylor this morning. It seemed like a very nice place, very different than what we have been used to however. One of the ways God has been taking care of us is that the patient load at the hospital was very low the entire time we were there so we never felt like Jack was being neglected. This place is FULL. Not that I think Jack is going to be neglected, but a very different atmosphere and energy when there is SO much going on.
May 18, 2005
JACK'S BACK!!!!
Jack is talking, Jack is swallowing, Jack is happy and smiling!
His therapy went great, he was swallowing saliva on his own. I was so excited we called daddy to tell him, and Jack started talking to Daddy on the phone!
Then we called Mommer (grandma) and when Elaine answered the phone Jack said, "Hi Mommer this is Jack!"
May 25, 2005
It's Party Time!
As things stand now, Jack's party is planned for Tuesday evening in the fellowship hall at Southern Hills Church of Christ. It is come-and-go from 6:30-8:00. Hope everyone can make it and hug Jack, Tammy, Rob, Sophie, and DJ and tell each of them what a precious light of Christ they each have been -- and that we are SOOOOO glad they are all home!
July 21, 2005
So we do have to go, "there."
My last post I wrote the options about what could happen to Jack's tumor. I didn't even let my mind go "there" but now we have arrived to "that" place.
Jack's mri was yesterday, today was clinic. Our neurosurgeon, Dr. Price, along with an oncologist, Dr. Bowers, came in to tell me that Jack's fragments of tumors left from the surgery are growing at a very fast rate. There was a grouping of abnormal cells (next to the tumor that was for the most part removed back in April), that grouping of cells has turned into a tumor also. So we are looking at starting chemotherapy in the next 2 weeks.
August 2, 2005
Eye Surgery - Check
Port Surgery - Check
We got home an hour or so ago from Fort Worth after the completion of 2 successful procedures. (Jack started chemo a couple of days after this)
January 10 2006
Big Smiles
The visit with Dr. Bowers, Jack's oncologist, went great! He said the tumors have shrunk even more and now they are not even a mass of bulk, but considered more of a plaque, a thin layer of tumor.
April 4, 2006
When Dr. Bowers called us back in for the results after he had received them he said that there had been no change in the tumor size. It has stayed the same over this last course of treatment. So the plan is to continue with chemo and see what happens.
April 13, 2006
I asked Dr. Bowman if he could in his experience forecast into the next 2-3 years and tell us what this will look like, he said that he would guess we would have already done radiation by that point.

Emotions have been all over the map this last year. Thanks be to God for lifting our chins to Him throughout it all. I am blessed to be Jack, Sophie and Derek's mom, and especially blessed by my husband Rob. Jack has inspired those of us close to him, and those far away. His smile is contagious and evokes joy in all who see it. Thank you God for blessing us with Jack.

Comments

Sarah said…
Thanks for the recap -- I don't know how you go back through that. I can't do it. Thank you for sharing your walk with us!
Anonymous said…
I cant believe it has been a year already. Some days it seems longer with all that he has been through. There has been alot of things to happen in a year. We love you and pray for you all often. Hopefully we can come out this summer.

Love you,
Becky
Anonymous said…
I found the blog!!! I am sad you didn't put in the Relay for Life blog that Jack and Rob were interviewed by a famous reporter ;) - I enjoyed our interview today and I will pray about the outcome so I can make it the best possible story. I have not read all of these blogs yet, but I will get to them. Your family is such an inspiration to me. The anniversary will be a time of celebration and such nostalgia. I don't have the same anniversary like you, but as I told you I lost my mother to a heart attack five years ago. Each year the anniversary feels it is only yesterday yet so far down the road of knowledge and growth. I felt so much of what you were saying in the interview. Those kids are so awesome; you have truly been blessed! If you need me or want to keep up in any way my e-mail is jules7adams@hotmail.com. Just so you know I am not some cookie-cutter reporter; I care about my people and I will always think of you.
stephc said…
Wow! what a testimony you are to the peace of Christ. Thank you for sharing your journey with all of us. Still lifting you up!
Anonymous said…
Tammy - I want you to read my rough draft of the story before I put it together for the news. Tell me if everything is accurate or if you do not like any part of it! It gives me chills to read :)... (I put it in television form so there are demands for the director for On Cam and such for Bob & Angela and then Me...)

[ONCAM] BOB & ANGELA:
MILLIONS OF CHILDREN AROUND THE WORLD FIGHT AGGRESSIVE TUMORS ON A DAILY BASIS. ONE SEVEN YEAR OLD IN ABILENE BEGAN HIS BATTLE LAST YEAR AND IS NOW CONQUERING A BRAIN TUMOR. THE MARCELAIN FAMILY SHARED THEIR OWN MEDICAL MIRACLE WITH KTAB'S JULIE ADAMS. JULIE?

[TAKE JULIE AT MONITOR]
THANKS, BOB AND ANGELA. SEVEN YEAR OLD JACK MARCELAIN WAS TREATED FOR FREQUENT HEADACHES AND STOMACHES FOR ABOUT A YEAR AND DOCTORS JUST THOUGHT HE WAS PRONE TO ILLNESS UNTIL ONE DAY ONE OF HIS EYES TURNED IN LEAVING HIS PARENTS TO KNOW THIS WASN'T JUST A BUG. I MET JACK AT RELAY FOR LIFE THEN JOINED THE MARCELAIN FAMILY AT HOME.

[TAKE PACKAGE]
SOPHIE AND JACK MARCELAINE ARE TWINS. ALIKE IN MANY WAYS BUT DIFFERENT AS WELL - SOPHIE IS THE QUIET ONE AND JACK ENJOYS THE SPOTLIGHT - THEY ARE BOTH CLOSE TO PARENTS TAMMY AND ROB AND THEIR BROTHER DEREK, BUT LAST YEAR JACK GOT NEWS THAT WOULD SHAKE THIS WHOLE FAMILY'S FOUNDATION.

JACK MARCELAIN. "TUMOR. WHERE IS IT? IN MY HEAD."
TAMMY MARCELAIN. "YOU JUST DON'T EVER THINK YOUR CHILD WILL GET A BRAIN TUMOR."

THE TUMOR FORCED JACK TO ENDURE SURGERY TWO DAYS AFTER BEING DIAGNOSED, THEN HE FACED POSTERIOS FOSSA SYDROME GIVING HIM NO FACIAL CONTROL MEANING HE COULD NOT LAUGH, SWALLOW OR EVEN OPEN HIS EYES. AFTER BEING IN REHAB FOR A FEW WEEKS JACK SHOWED HIS FAMILY THE SUN WAS GOING TO SHINE THROUGH THIS OBSTACLE.

ROB MARCELAIN. "WE WERE STILL IN DALLAS AND JACK LAUGHED AGAIN - WE WERE ABLE TO BREATHE A SIGH OF RELIEF AND KNOW EVERYTHING WAS GOING TO BE OKAY."

TAMMY MARCELAIN. "HE IS THE BRAVEST SEVEN YEAR OLD BOY EVER AND HE HAS FACED EVERYTHING HEAD ON."

LAUGHTER, STRENGTH AND FAITH THAT HAS BROUGHT THE FAMILY CLOSER TOGETHER.

ELAINE MARCELAIN. "MY GOODNESS, IT WAS A TEST OF OUR FAITH BUT WE HAD THE WHOLE CONGREGATION PRAYING AND WE HAD SO MUCH SUPPORT."

TAMMY MARCELAIN. "THEY TOLD US NOT TO EXPECT ANYTHING EDUCATIONALLY AND HE IS DOING GREAT. HE IS AN AWESOME READER. SOMETIMES IT FEELS LIKE IT WAS JUST YESTERDAY AND SOMETIMES IT FEELS LIKE IT NEVER HAPPENED. IT WAS SO OVERWHELMING AND WE MADE IT THROUGH EACH DAY, EACH MINUTE."

THE MARCELAINS SAY THE PAST YEAR HAS TAUGHT THEM EACH OF THOSE DAYS AND EACH OF THOSE MINUTES IS TRULY FROM GOD.

TAMMY MARCELAIN. "EVERY DAY IS A GIFT. EVERY DAY WE ARE THANKFUL; I AM THANKFUL FOR EACH SMILE ON MY KIDS' FACES AND EACH HUG."

AND FOR THIS LITTLE BALL OF INSPIRATION HE NEVER LET A BRAIN TUMOR GET HIM DOWN - WHEN ASKED IF HE WAS SCARED HE HAS A SIMPLE ANSWER -

JACK MARCELAIN. "HOW DID YOU GET THROUGH IT? I DIDN'T WORRY ABOUT IT."

MAYBE WE SHOULD ALL THINK LIKE YOUNG JACK MARCELAIN - A TRUE SURVIVOR.

[BACK TO JULIE AT MONITOR]
JULIE ADAMS. FOR CANCER MEDICAL MIRACLES I'M JULIE ADAMS.

[BACK TO BOB AND ANGELA]
JACK'S TUMOR IS NOW A THIN LAYER OF PLAQUE, HE WILL CONTINUE CHEMOTHERAPY AND RADIATION FOR TWO MORE YEARS TO ENSURE THE AGGRESSIVE TUMOR DOES NOT GROW.

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