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Zach's Story



Zachary David Martin was born on October 26, 2001.  He was a few days premature - 36 weeks and 5 days - he surprised us by coming 3 weeks early!!!  He seemed to be fine, and we were worried about taking him for his 2 month check up since he would have to have 'well baby' shots (how would he react, would he have a fever, etc.).  All of this was new to us since Zachary is our first child.  The visit seemed fine, but the Nurse Practitioner asked us if his belly was always that big?  We just thought he was getting a 'baby belly' and told her yes.  She finished the exam, and wanted the Pediatrician to take a look at his belly.  Of course, we started getting worried and wanted to know what was going on.  The pediatrician looked at our son, and he said to the practitioner "That feels like his liver!?!".  She responded with "That's what I thought, too."  They got another Pediatrician in there for another opinion, and by this time, we were totally freaked out.  They all agreed we should see a Pediatric Gastro-Intestinal specialist the very next day for an abdominal ultrasound and evalulation by them.  This was on January 8, 2002.  On January 9th, we went off to the GI specialist, and they did the ultrasound.  Our worst nightmares were revealed - there was a hepatic mass (very large) and they were 99% sure it was Hepatoblastoma.  We were so devastated. They admitted him to the hospital (Children's Healthcare of Atlanta - CHOA), which was right across the parking lot from their offices.  They wanted to do a CT scan and bloodwork to see what we were up against.  It was indeed a tumor, and his Alpha Feta Protein (AFP) level was over 395,000 - yet another indicator of Hepatoblastoma.  Zachary stayed in the hospital overnight, and surgery was scheduled for the very next Monday, January 14th. They wanted to do at a minimum, a biopsy, but they hoped they would be able to resect it.  They also wanted to put in his Central Line for chemo drugs that he would have to have regardless.  We went home that Friday and tried to have a normal weekend, but we always wondered if it would be the last weekend with our little boy.  Surgery took what seemed like a lifetime, but they kept us posted on how Zach was doing throughout the process.  They were not able to rescet the tumor (I don't think the surgeons and/or doctors really thought they could, but they wanted to do a biopsy, so they had to 'open him up' the same way regardless).  This was what made Zach's diagnosis Stage III - it had not spread to other organs, but they could not resect it right away.  Right after surgery, he was in ICU for one day.  He was SOOOO swollen and puffy - he didn't look like our little boy lying there with all those IV's and things hooked up to him, and with the bandage across his belly.  (The central line was depressing at first, but later we have really considered it a God-send.)  We were placed on the AFLAC Cancer and Blood Disorder wing at the hospital.  They were so awesome - we really cannot give them enough credit.  We had nurses try to help explain what would be going on and the Oncologist was excellent.  He explained that Zachary would have 6 rounds of chemotherapy.  They wanted to have 4 rounds of chemo, then try surgery to resect it and two follow up rounds.  He would be given Cisplatin, Vincristine and 5FU - all the side effects were explained - short term and long term.  They also told us about Amifostine - did we want to be part of this clinical trial?  We said YES without hesitation - any drug that could potentially help reduce the high frequency hearing loss and kidney damage was welcomed.  Once we said yes, we had a 50/50 chance of the computer selecting us.  I'll never forget Dr. George (the oncologist) coming in and telling us - "We got amifostine!".  So, our chemotherapy journey began two days after his surgery.  Zach got the amifostine first, which made his blood pressure bottom out (expcted reaction, but this only happened the very first time - subsequent doses only made him sick RIGHT after it was given - literally about 15 minutes afterwards, he was sick, then it was over).  Then the Cisplatin, then 20 hours of fluids, and the Vincristine and 5FU were quick 'pushes' through his central line and we went home with our little fighter.  We continued with follow up doses of Vincristine and 5FU in the Oncologist's office to complete round 1 of this process. Days, weeks, months passed, with many visits to the hospital for more CT scans, X-rays, chemotherapy treatments, but we never missed a beat.  We really feel so fortunate - so many times something like this can rip a marriage apart, but it truly seems to have brought us closer together.  We have completely turned it over to God, and know that as long as we do what we are supposed to (doctor visits, follow up scans, tests, etc.), Zachary will be taken care of.  We continued with the Chemotherapy treatments as scheduled.  We were so lucky - Zach had only two or three high temperature visits to the ER during the whole process, and he never got sick with anything else (cold, flu, etc.).  He really didn't seem to have a hard time with the chemo drugs - you could tell some days he just didn't feel great, but who could blame him?   They/we gave him Zofran, which is an anti-nausea medicine - it works wonders!  The follow up scans and tests showed that Zachary was having a great response to the chemotherapy.  They were so pleased and amazed at how his tumor was shrinking.   The second surgery was scheduled for April 19, 2002.  If we thought the first surgery was long - this one took forever!  The surgeon was pleased, and came out looking exhausted.  He told us he felt like he got it all.  The tricky part was that the tumor was 'butting up' against the 'line' between lobes (as well as the limit of liver he could resect) and he felt like he got it all, but that was his only concern.  They ended up removing 2/3 of his liver and his gall bladder.  (The gall bladder is kind of funny because it was not mentioned, and we had a follow up ultrasound and the technician and radiologist asked us if he still had his gall bladder?  We were like - "Yes - they never said anything about removing it - we're 99.9% sure he still has it" - WRONG!  Even the oncologist had to go back and read the surgery notes to be sure - it was something we joked about with the surgeon later on when his central line was removed!!!!)  The ICU visit after this surgery was expected to be like the last - short and sweet, but that was not the case.  Zach was in ICU for 11 days - it was such a nightmare - we were scared to death pneumonia would set in - his lungs were not responding and he had to be on the ventilator for 7 days.  They extubated him and had to re-intubate him not 20 minutes after taking it out - we were crushed.  Ironically, two days later they extubated him again and he was fine.  We joked that it was because he was not 6 months old yet - he turned 6 months old the day in-between the two attempts - he just wasn't old enough!  At least we still had our sense of humor about us!!!  We stayed with him in ICU 24 hours a day, 7 days a week.  He was finally put on the AFLAC floor, and they started his 5th round of chemotherapy before we went home.  That was the longest 2 1/2 weeks of our lives - we went home on May 1st, hopeful this would be the last 'big' surgery he had to have.  We had our last round of chemo at the end of May/beginning of June, and were officially 'off therapy' June 14th.  There was a big celebration at the oncology office, with a huge balloon, beanie baby and picture taking for the "Off Therapy" bulletin board in the office.  We were so happy that he didn't have to have anymore chemotherapy treatments!!!!  The nurses on the AFLAC wing were happy we were not having to come back, but sad they wouldn't see Zachary anymore - it was a 'good' goodbye.  Since then, we've had the central line removed and the scars are healing.  (The central line was a definite learning experience, but we became pretty good at changing the dressing and giving baths that did not get it wet!!)  Zachary is making new strides everyday - his hair has come back and he is such a 'little person' now.  He had his first birthday on October 26, 2002 and we had a huge blowout at a local park here in town.  There were about 80-85 people there and we all celebrated not only his birthday, but his life.  Christmas was nice - it was sort of weird to reflect on how 'this time last year we didn't even know he was sick, and now look at what he's been through and where he's come'.  We have had regular appointments with the oncologist. They do bloodwork and general exams and X-rays every other month. Zach's AFP levels have continued to drop - after the last round of chemo, they started checking it every month - it's been 66, 33, 13, 6, 11, 7, 8, 6 and his last one was 7. We never knew 13 could be such a great number - that was the first count that put us in 'normal' range (0-15).  We always get uneasy before a visit, but we know that God will take care of him, as he has taken care of all of us through this entire journey.  They seem to think that if they got it all, Zachary can be cured of this.  Dr. George said that usually if it is going to come back to the liver, it does so within 6-8 months of being off therapy.  What they are worried most/focusing most on with Zach now is his lungs.  That is usually where it goes next if it is going to spread.  The doctor said it would not be the worst thing in the world, but we'd sure like for it not to happen!!  We just continue to pray and live each day to the fullest.  We are so very lucky to have our little boy - he is such a blessing and a true fighter.  We have also been very lucky to have wonderful family and friends to help support us and pray with (and for) us.  We know we could not have gotten through it all without everyone's continued prayers and support, and for that - we thank you.

 

May God Bless all of you -

Shane, Amiee and Zachary

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