Meguire S. - Quilt Finished in 2006

Born: October 15, 2000

Illness: Acute Lymphoblastic Leukemia

Meguire S.'s Story

written by mom Christieanne

Meguire was born on October 15th, 2000 after 17½ hours of mom being in labor.  After being cleaned up they took him away and kept asking me if my water had broken sooner and I said "No, the doctor broke my water this morning why?"  They just said that it seemed as if he was a little dry so I thought maybe they were just making sure.  The next day when he was laying in the little like hospital cradle I noticed that he kind of looked like he was jerking like seizure type activity so I called the nurse who right away called the doctor.  They decided to do a CT scan, an EEG, a spinal tap and other tests.  After all that, it just came out that his magnesium was low so he had to get magnesium drops in his formula for 2 weeks.  On top of all this, Meguire was born with Hydrocele which is were the testicles are very swollen and they said that it was common in little boys and that it would go away in about 2 weeks, but that never happened.  So at 3 months old he had a Hydrocele surgery.  When doing the surgery to repair the Hydrocele, they found he also had a hernia, so they repaired that at the same time.

All that done, Meguire grew to become a very happy healthy little baby until he was about 2 years old.  One day when he was at daycare his "daycare mom" called me at work and said that he was having a real hard time going to the bathroom, so I called his pediatrician and they advised to change his diet.  We tried that and it had been 3 days and he still couldn't go to the bathroom, so I called the doctor back and they had me bring him in and gave him prune juice and laxatives.  Still nothing, this poor baby was in so much pain so I called them back again.  This time when I took him in, I noticed that he had a perfect line of bruises straight down his spine, so I asked his daycare mom if he had fallen and she said no, so I showed them to the doctors and they sent us over for blood work because they said the bruising was a sign of Spinal Meningitis.

We went that day to the hospital and had the blood work done.  The next day I called the pediatrician's office and they said that the hospital had screwed up on his blood work and we had to go back and redo it but, they needed me to come to the office and pick up another script for the blood draw so I was pretty mad at that point.  I picked him up from daycare and went to the doctor's office.  It seemed like we sat there forever.  They finally called us and put us in a room.  I was very confused why they put us in a room so we waited a few minutes and the nurse practitioner came in and said they did not screw up on the blood draw... they just didn't want to tell us the results over the phone.  She said Meguire had all the signs of having Leukemia and that we needed to go straight to the hospital.

June 4th, 2003 we were admitted to the hospital for a nine day stay where Meguire had a spinal tap done and they found that he did indeed have Acute Lymphoblastic Leukemia (ALL).  We then had to decide whether we wanted to go on a study protocol or whether we wanted to go with the regular course of treatment. So my husband and I decided to so with the regular treatment it was a lot less invasive and they said there was still a 85% cure rate.

We were going through treatment and everything was going ok.  We had gotten to the maintenance phase and we did have a few delays during treatment, but the doctors assured us that was quite normal.  Meguire had to go in for his first 3 month spinal on his maintenance phase and that went ok and when we got home Meguire took a nap and I went to the store.  When I got home my husband Josh said he had some bad news.  I said "What now??"  He said that the doctors had called and said that when they did his spinal today, it showed that Meguire had Leukemic cells in the spinal fluid.

I called the doctor's office and she said that we needed to start all over again, that they had to do a very aggressive treatment to get his spinal fluid into remission so we started the treatment the next day, more spinals weekly and heavier chemo.  The doctors said they wanted us to go meet with some doctors at Columbus Children's Hospital for a possible Bone Marrow Transplant.  We went a month later and after speaking with them and going over his history, the decision was that his best chance for survival was to have a Bone Marrow Transplant.

On February 2, 2005 Meguire had a Bone marrow transplant and he had some tough times when he had diarrhea and a couple times of vomiting but all in all he did very well.  He didn't get any mouth sores and the Doctors from Columbus Children's hospital said that Meguire did so well he even got out of the Hospital 27 days post his transplant and that is great!  In the beginning they said he would be in at the minimum he would be in 45 days so he did great.  He is now 1 year post his transplant and he is doing wonderful he amazes us everyday at how well a 5 year old child could do with all of this stuff he goes through but we just keep all our faith in God that he will grow up to be a very old man and live a happy healthy life.

Written by Meguire's mom Christieanne