Thank you for visiting Zachary's web page. Zachary was diagnosed with Juvenile myelomonocytic leukemia in May of 2001. This is a very rare cancer and does not respond to conventional therapy (chemo and radiation).He had 2 rounds of chemo and a partial spenectomy to prepare for transplant. Zachary had a matched sibling bone marrow transplant on October 4th. His big brother, Kyle was his donor. As of now, he is in remission. His tests show 100% donor cells and no sign of the JMML. It has been a tough battle, but Zackie is strong.

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Journal

Sunday, December 25, 2005 1:01 AM CST

My pregnancy with Zachary was a tough one. I went into preterm labor at 29 weeks. He managed to hold on until 37 weeks when we realized my water had broken at some point. I was induced and a stubborn 13 hours later, Zachary easily entered the world. He weighed in at a hefty 8 pounds 1 ounce, not bad for three weeks early. Every thing was perfect...for five days. On his fifth day he became very jaundiced and lethargic. We went to have his bilirubin tested and by the time we arrived home, the doctor was on the phone saying his level was critical. Zachary had 3 days of continuous phototherapy. On the day the therapy was discontinued, he had his bris.

When we took Zachary for his 2 week visit, we figured all would be well. He was eating well and gaining weight. The doctor noticed his knees and hips were clicking. He sent him to have an ultrasound. Everything came out normal. During the ultrasound, Zachary gave the tech a hard time. She told me he is quite the "fighter"...little did we know then how true that was.

The next 3 and one half months went very well. Zachary was growing and thriving. The only strange thing about him was he rarely smiled. He seemed happy, but it was very difficult to get him to smile. At 4 months old, Zachary got RSV and bronchiolitis. We had to do round the clock respiratory treatments to get him through. When that wasn't enough to keep his lungs clear, he was put on steroids. Thankfully, that helped him to get over the nasty virus though the recovery was slow.

Over the next 5 months, Zachary was a wild and playful baby. The smile we had waited for was now plentiful and contagious. We moved to a new town which we would now call "home". When he turned 9 months old, the ear infections started and were relentless. We happened to be in Disney during the worst part of it. Antibiotic after antibiotic were tried and failed. The next 3 months were miserable, but Zachary continued to shine.

At Zachary's 1 year doctor's visit, the ear infection was still present. In addition, his spleen was enlarged. A panel of blood work was done and the assumption was EBV or mono. When the results came in the EBV was negative but his white count was elevated and he was anemic. The platelet count was unknown because it had clotted. One day later, on Thanksgiving morning, Zachary woke covered in petechaie (a red rash) and big black bruises. We headed to the local emergency room and found that his platelet count was critically low, 3,000 (normal is 150,000- 400,000). They sent him by ambulance to another hospital that had a pediatric hematologist/oncologist.

Once admitted to the new hospital, the battery of tests began. The doctor noted Zachary’s spleen and liver were grossly enlarged. He also had enlarged lymph nodes. He felt that Zachary had a virus that was affecting his bone marrow. He gave him IVIG and ordered a bone marrow aspirate for the morning. The IVIG did nothing to help his counts. The bone marrow showed many abnormalities but nothing conclusive. A second dose of IVIG was given and a second bone marrow test was done, but this time with biopsy. A few days later Zachary was sent home with the diagnosis of “probable virus”, a low white count and rising platelet count. 24 hours later, Zachary was readmitted with a 105 fever. Not much was done for him and he was sent back home a few days later.
At the advice of the doctor, we headed to the Children’s Hospital of Philadelphia for a consultation. We brought with us all the test results and bone marrow slides. The oncologist reviewed Zachary’s history, examined him, and we went home. The two hospitals at this point discussed his case. When we returned to the original doctor, he told me they concurred this was as result of a virus. Tests were also to be done for other genetic diseases. I felt we were constantly at doctors, scans, and the lab.

Months went by and Zachary continued to get sicker. He was weak and tired all the time, though he tried to continue to play. I felt in my heart and head that this was not a virus…something needed to be done. I challenged the doctors and advocated as best I could. In April, after watching my son struggle to keep up with his brother, I phoned the doctor at CHOP. I believe my message was hysterical because her call back was very quick. I told her that things had not changed since our December visit and he in fact had gotten worse. She had told me that a test for JCML or JMML was supposed to have been done by the original doctor. I guess he had disagreed with her plan, because no test was ever done. In fact, I had no idea what JMML was. She had us come to CHOP.

Once at CHOP, I felt Zachary was in safe hands. Stuart and I will never forget the bald children running and playing, while their parents sat somber and tired. A third bone marrow biopsy was done. The doctor had to call in a pathologist to see if what she had gotten was in fact bone marrow. The marrow was very thin and the bone was soft. The pathologist confirmed it was marrow, but it was unable to be assessed…Zachary’s bone marrow was failing. It would take 3 weeks to get the results of the JMML test. We now learned that JMML stood for Juvenile Myelomonocytic Leukemia…they felt my baby had cancer.

Three weeks later, on May 23rd, 2001, Zachary was officially diagnosed with JMML. His care was placed in the care of Dr. Bunin. The consultation was an experience I would never forget. Stuart and I sat with our mouths hanging open and our hearts on the floor. We learned the prognosis for JMML was poor and our only hope was a bone marrow transplant. There was no chemo drug or radiation strong enough to kill the cancer. It was at this point we chose to put our emotions aside and focus on Zachary and his needs. We decided we would only do as much medically that Zachary could handle.

In June, Zachary had his first round of chemo. This was done to reduce the amount of cancer in his body to prepare him for transplant. I remember the mixed emotions I had when the first drops of chemo reached his body. I was terrified that he was being given poison, but I was glad we were finally doing something to heal him. That hospital stay was rough and the side effects were plentiful. What I didn’t expect, once the side effects let up, was that Zachary would look better and feel better that ever. It was bitter sweet.

Time passed by and Zachary was constantly in the hospital for infections, fevers and then a second round of chemo. Every night I slept with Zachary in my arms. You would think that he would be miserable, but in fact, Zachary was happy and playful. Our time one on one was precious, though I desperately missed Kyle, who was almost 4 years old. August was his last hospitalization pre BMT for his partial splenectomy. The surgery was painful but after a few days Zachary bounced back. Once he was discharged to home, we were hit with the realization that Zachary may not survive BMT and if he did the cancer had a 50 percent chance of returning. We spent the next month holding tight to one another and holding on to each and every moment.

The day of admission for his transplant was a nerve wracking day. We spent hours that day waiting for our room to be ready. Zachary enjoyed playing with a Woody toy at the clinic and taking a stroller ride outside. When the clinic closed, and our room still was not ready, we went to the oncology floor’s playroom. We ate dinner and watched Zachary play. The juke box was off the whole time, but suddenly started playing the song “I’ll say a little prayer for you”. Stuart and I knew at that point we would make it through. That Woody toy never left Zachary’s hand all through transplant.

Transplant day too was bitter sweet and very emotional. The anxiety of having my one son now weak and sick from the intense chemo and my well son under general anesthesia donating the bone marrow needed to save his brother, was overwhelming. I couldn’t breathe until Kyle was out of the OR and awake. Kyle pulled through like a champ and had one last visit with Zachary before Zack’s visiting restriction wouldn’t allow him. He got to watch as his bone marrow was infused into Zachary’s line. I left Zachary in his father’s safe hands for the first time that night and went home with Kyle to help him recover from the bone marrow harvest. I really needed that time with Kyle, but it didn’t stop me from constantly calling Stuart to check on Zachary.

35 days from when Zachary entered the hospital, he was allowed to come home. We walked out those doors leaving behind the memories of transfusions, fevers, vomiting, diarrhea, anaphylactic shock, a big GI bleed, skin breakdown and high blood pressure. I wanted to see a child, that days prior was introverted and sad, smiling and running. He was so cute with his yellow mask. We were sent home on many medications and a NG tube for his feedings.

2 weeks later, a bone marrow test showed Zachary had healthy donor marrow. His broviac line was removed. Zachary spent the next couple of months regaining his strength and finally enjoying being a toddler. Our hectic life filled with doctors and medications changed to a normal life. We watched Zachary’s smile and knew we did right by him regardless of what the future holds.

Zachary is now 6 years old, over 4 years post bone marrow transplant. By looking at him, you would never know what he endured. He has no known late effects from treatment. He continues to deal with ketotic hypoglycemia which is unrelated to the JMML. Zachary is a happy and healthy boy. He continues to amaze us everyday. He has very few memories of his illness but has emerged into a sensitive and caring young man. I pray I will never see his smile disappear again.

Thank you for supporting and praying for Zachary and our family though the past 5 years. I plan to close Zachary’s web page, so I will leave this as my final entry. I will post new pictures too. Please visit www.jmmlfoundation.org and help in any way you can. Continue to pray for those families still fighting and for those whose children didn’t get to grow up. The lyrics below are from the Goo Goo dolls the song "Better Days". This song touches my heart.

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