Hatcher Ryan

This is a story about the love of my life, Hatcher Chasiel Ryan. 

During my routine 20 week ultrasound, we found out that our baby boy would have Down Syndrome and have clubbed feet. The DS was confirmed the next day via amnio. At first we were in shock, but by the next day, we realized that he was God's gift to us, and that was that! Everyone was very supportive!

On Tuesday, June 24, 2008, Hatcher bounced into our lives as cute as we knew he would be! By the sweet grace of God, he did not have clubbed feet or any of the other medical problems associated with DS. I counted each and every day as a blessing.

On Monday, November 3, 2008, Hatcher seemed to be feeling ill, but he didn't have a fever and I just thought he might be coming down with a cold. Three days later, Hatcher and I were excited to take his first plane trip to see my BFF in Albany, NY. He was wonderful on the flight and seemed to be feeling better. A couple of days later, after having had a great time shopping during the day, I gave him a bath upon our return home.  During the bath, I noticed he had a rash.  A couple of hours later, Hatcher’s nose started to run, and he developed a fever of 101.6 degrees. As a precaution, I called Old Harding Pediatrics (OHP) in Nashville. This was the first time my baby had gotten sick, and I wanted to make sure that nothing would be different because of the DS.

The next day, Sunday, around noon, a nurse from OHP called back and told me she suspected the "rash" to be something called petechiae: Minute hemorrhagic spots, of pinpoint to pinhead size, which are not blanched by pressure.  The nurse told me to take Hatcher to a doctor immediately, so we went to the ER. Two hours later, I was told by the ER docs in Albany that they suspected Hatcher had spinal meningitis.  They also said it could be pneumonia. We were transferred via ambulance to Albany Medical Center and admitted to that hospital. A resident came by to tell me that Hatcher’s platelets were low, and I immediately ask her if it was leukemia. I knew there was a high risk for leukemia because of the DS. Several hours later, it was confirmed that my sweet baby boy had a definite diagnosis of leukemia.

From that point everything was a blur for days. All I remember was them telling me he needed a bone marrow biopsy, and I knew we need to get back to Nashville.

Dr. Lowas told us that Hatcher had "pre-leukemia." Basically, it meant that he could develop full blown leukemia at anytime. Dr. Lowas estimates that there is a 99% chance he will eventually get this.

After what seemed like a million trips to Vandy, on February 6, 2009, Dr. Lowas called and said that Hatcher had "full blown" leukemia, AML (acute myeloid leukemia.)  Because Hatcher has Down Syndrome, and he was under the age of 4, he had a 95% chance of “full remission.”  I try my best to always see the glass half full, but we were already on the downside of odds.  So, I was going to do the only thing I could do and put it in God’s hands.  Dr. Lowas asked us to come in on February 11th to have a Hickman port (which is needed for the chemo treatments) inserted and go over Hatcher’s plan for chemo.  The plan involved him receiving a cocktail of 3 various chemo drugs.  There would be six treatments, the first five of which would be inpatient for approximately 30-35 days per treatment.  We would be allowed to go home for about a week before having to come back and start another treatment.  The last treatment would be outpatient.

I could not breathe.  Six treatments?!  Were they kidding me?  He was too tiny; he was just a baby!  There was no way that I could leave him!  How would I juggle this, my husband, my other three children and my mom with terminal cancer to be in this hospital for the next SIX months with a sick baby?!  I could no longer think straight.  Overwhelmed was not the word!  Telling my three older children was even worse.  Not only was their brand new baby brother going to be very sick and gone, but Mommy too!

Hatcher's chemo began the morning of February 12, 2009. 

He breezed through his first treatment.  Treatments two and three were horrible, as they induced vomiting, diarrhea, constipation, the croup, and other side effects.  Treatment number four was a breeze, just like the first.  The fifth treatment was the worst!  Hatcher had soars in his mouth and couldn’t eat.  He stopped nursing.  His hair fell out.  The very worst part was that he could not suck his thumb, his pacifier.  He would hold it up to his mouth and cry.  It shattered me!  Being a parent with such a sick baby and being able to do nothing about it is the most helpless feeling ever!  Hatcher’s final treatment took place on October 9, 2009.  God could not have given me a more precious gift! 

As of July 9, 2009, Hatch has been in remission!  He will go for monthly check ups and have bone marrow biopsies randomly to make sure the leukemia stays gone.  However, he will be having surgery for a problem that he was born with called duodenal stenosis.  They will be rerouting his small intestines to create a larger open for his food to digest.  Apparently, he was born with this and all of the symptoms were the same as chemo; vomiting, diarrhea, etc.  The doctors believe that he was able to stay above the growth chart and continue to thrive because of breast milk which he received for fourteen months!  He will be required to spend at least another week in the hospital, but it is fixable! 

By the grace of God, Hatcher will only require physical, speech, occupational and visual therapy at least until the age of 3.  Developmentally, he still can not sit up, so the leukemia has definitely contributed to his developmental delays.  I am hoping the therapists will be able to come to our home to do these.  If not, Hatcher will be required to go to a public facility, so his therapies will be delayed until after flu season.

I do want to share with you that leukemia affects the ENTIRE family, not just the child.  My 10 year old twin daughters, Graycin and Matana, have struggled with having a very sick baby brother, not having my attention, their family falling apart and the loss of their Nana.  (Unfortunately, my husband, Hatcher’s father, could not deal with the stress of a special needs child, must less one that needed constant medical care.  Our divorce will soon be final.  The casualty in all of this was my step son, as I’ve been unable to talk to him since my separation from my husband.)

God is what gets me through every day.  Hatcher, Graycin and Matana are the strongest most resilient children that I know.  I am proud to be their mother!  God will see to it that we are going to be just fine…WE ARE SURVIVORS!

To all of you reading this, please know that there are many ways to help a family with a child with leukemia.  Financial contributions are always appreciated—not only do the medical bills pile up, but you also need gas money for doctors visits, extra diapers and wipes (for babies), co pays, unexpected meals for unexpected hospital stays or prolonged doctors visits!  If you cannot help financially, though, your time is priceless gift!  You can offer to wash clothes, clean house, run errands, mow the lawn, or take the other kids to do something fun!  You can watch the sick child so the parents can do something fun with the other children.  The caregivers need a break, a moment of sanity, a “God wink.”  They will never forget you for it!

In closing remember, we all make time for what we want!  Help in any and every way that you can!

Jennifer Schultz Ryan
Proudest Mommy ever to Hatcher, Graycin & Matana