^^Angel^^ Donovan R. - Quilt Finished in 2007

Born: December 9, 2004 - Passed: January 20, 2007

Illness: Infant Acute Lymphoblastic Leukemia, Acute Myelogenous

Leukemia with Mixed Lineage Leukemia

Donovan's story was written back when he was added to MACS as a "Featured Kid of the Month". He passed away on January 20th, 2007. We will update the end of his story as soon as we receive more information from his family.

Donovan's Story

written by mom Melissa

Our beautiful baby boy Donovan was born December 9th, 2004, one day before his scheduled arrival, weighing 7lbs 6oz and measuring 20.5 inches. He arrived with a great tan and lots of brown hair.

Only 4 weeks later, Donovan was rushed to Riley Hospital for Children in Indianapolis, Indiana and was diagnosed with IALL (Infant Acute Lymphoblastic Leukemia) on January 17th (although it took a few days to confirm).

That week I will never forget.

I was still on maternity leave and enjoying a brand new baby when I started to see little bruises on Donovan’s little legs. I thought that was really strange. I thought to myself ,"where on earth did he get those". I then started seeing other oddities. His nose was bleeding; his eye had a big bloody mark like someone had scratched him. We dismissed all these things because he was doing so well. We thought Dylan, our then 2 year old son, scratched him out of curiosity with his eyes. We thought his bloody nose was because we had all had a cold and it was so dry outside. So we turned on the humidifier to get some moisture into the air. But the bruising started to spread.

The first time I called the doctor, the bruising was only on his legs. So the doctor said it probably wasn’t anything to worry about and to call him if it spread, that was on a Saturday. By Sunday night his nose started to bleed and the bruising spread. I don’t know about all of you reading this but I have never seen a tiny baby ever have a bloody nose or severe bruising. He had little bruising all over his head and a couple of spots on his belly. By Monday I began to notice that Donovan's bruising was getting worse; the spots were getting darker in color. I was so scared for my newborn baby. I knew something was terribly wrong and I couldn’t face it.

I picked up the phone immediately and called the doctor. We went in to see the doctor all of us including Darren. The doctor thought Donovan looked great in terms of his weight and growth, but it would take that dreaded blood work to see what was making our precious baby sick. So the doctor ordered a CBC at the nearby hospital.

I got the call about one and a half hour later.

Something was really wrong.

Donovan could possibly have Leukemia.

Leukemia? CANCER? A Baby?

I didn’t know that was possible…

He was so tiny, so vulnerable, and didn’t have any clue as to what was about to happen to him…

His blood levels were really off. His platelets were 8 and normally they should be over 100,000.His White Blood count was over 675,000 and normally is supposed to be 5-15 and his hemoglobin was 5 and normal is 10.5-15. By the time we got to Riley… His white blood cell count was over a million. Yes a million… At that point my life was about to seriously change as well as my family's life.

We were told to get to the Riley Outpatient Clinic ASAP. Donovan spent 6 and half weeks inpatient undergoing extremely high doses of chemotherapy and surgery after surgery. Donovan remained in remission for 7 months.

Well I wish that was the end of the story and Donovan and our family lived happily ever after. Donovan sadly relapsed in his bone marrow, blood and CNS on August 16th 2005 during the most intensive phase of his chemotherapy protocol. The hope then was to get him back into remission. The next step would be to have a Cord Blood Transplant and this would be the only option to save his life. Our family made a very difficult decision and left our home in Indianapolis, IN and traveled 700 miles to Durham, North Carolina so that Donovan could have a cord blood transplant by the woman who had Pioneered it 15 years earlier, Dr. Joanne Kurtzberg.

It took Donovan two different chemotherapy trials to get him back into remission in which he suffered from SEVERE bacterial infections and pneumonia, which we thought were going to halt his ability to get the transplant. Transplant was his only hope.

It took 8 weeks inpatient at Riley Hospital to finally do the trick. Donovan was released October 10th 2005 and we were in North Carolina October 11th to start our intensive two-week testing and pre-treatment for his transplant. A transplant doesn’t work for Leukemia if the patient isn’t in remission. So technically Donovan relapsed 2 times before we got to Duke University.

While we were at Duke, Donovan had sadly relapsed again for the 3rd time. Given Dr. Kurtzberg's experience, she gave him more chemo for five straight days and that put him back into remission and Donovan had a cord blood transplant on November 10th 2005.

In April 2006 barely over 3 months later, Donovan had an isolated relapse in his testicle with leukemia. Donovan underwent surgery to remove his testicle in hopes that we got it all. Due to the relapse, his odds are much greater to relapse again. During the first three months post transplant Donovan had to have surgery for a g-tube to be put in and to have a Nissan surgery. He also suffered from a Pericardial effusion in which the doctors put in a catheter to remove fluid from around his heart.

Unfortunately, Donovan’s story doesn’t end here again..

Donovan sadly relapsed again, after 9 months post cord blood transplant, on August 17th 2006. Donovan had 96,000 white blood cells and 96% blasts in his bone marrow. We don’t know what the next step will be but we are ready to fight. Darren and I agreed to go ahead with the very intensive chemotherapy and radiation with second transplant route for our precious DONOVAN. This will be his chance to beat the odds for the last time. At present, Donovan has finished 13 rounds of Radiation to his brain, spinal chord, testicle, and total body. He also went through 10 days of intense chemotherapy and then conditioning to knock out any bone marrow that maybe left in his body to prepare him for a second transplant. Donovan spent 51 days inpatient with some complications. He is now outpatient going to Clinic every other day.

We have been away from our home in Indianapolis for over a year and will continue to stay in the Durham/Raleigh area for another year in hopes that this time he will have beaten the odds again and we will be on our way to having a healthy baby boy. Due to all of this treatment Donovan won't be like other babies or toddlers his age, he will always have to fight to develop and grow to catch up from all that he has lost.

To this day Donovan cannot crawl or walk…We are hoping that he will eventually acquire these developments and cannot wait… He will be able to play with his big brother and run around like normal toddlers.

Please pray for our precious Baby Donovan, “The Warrior”.