2008

I decided to create this blog to keep family and friends up to date on the status of Zachary. I will try to keep this updated and give as many facts as I can. Forgive me if my emotions get in the way and please do not pass judgment on me.

On December 26, 2007 Zachary James was admitted to the hospital at 5 weeks old. Z was not gaining weight, losing it in fact. He had reflux, a cough, sunken soft spot and was only eating 10oz a day. We sent him as a direct admit so that he could be tested to find a diagnosis.

His white blood count was high and after 2 days it kept getting higher. We did a bone marrow test on him and the hematolgist suspected Juvenile Myelomonocytic Lukemia or JMML . This disease is so rare, 3 in 1 million! The only cure for this disease is a bone marrow transplant.

As of today, January 1, 2008, Zachary is on low doses of Chemo and it is keeping his WBC down. He is now on a feeding tube and has gained nearly one pd since birth, 7lbs and 12 oz. When admitted he was also diagnosed w/a broken collar bone (YOUCH), pnuemonia, (confirmed) reflux and later H-flu. He is on Pepcid and mylanta and an antibiotic and is currently in the PICU.

He is my little trooper and never complains unless he is unswaddled! He has a central line in so they do not have to poke him for blood. Thank goodness. The pnuemonia is gone and we need to get Z eating 3oz every 3hrs rather than the 1oz every 3hrs. We hope to move him to the main pediatric floor tomorrow.

Jason, Jonathan and I sent off bloodwork yesterday to be tested to see if we are a bone marrow match. My hopes and prayers are that it is Jason or I. I can't imagine both my boys in the hospital. We were informed today that the BMT will take place at Children's hospital here or in Cincinnati or Minnesota. Z can come home once we get the other bone marrow test back and he gains some more weight. We hope in a day or so.

My brother and sister in law banked my nephews cord blood and offered it to us for Z. I am so grateful for this. I am speaking to his hematologist about this and hope to find out more this week.

We are blessed with so much support...family and friends and even strangers. While 2007 was a rough year and I don't think I can handle a repeat of that year, I know we will be okay. God will see too. With my Mother's passing in 2007, I was devastated taht she would never meet Z. Now I realize she is up in heaven and watching over Z and us. I know Mom will see us through this and even though my heart breaks that I can't pick up the phone and call her, I know she is with me.

We are thankful for any prayers that you can send our way.