Hayley

Hayley is one of only 700 people in the world whose body doesn't produce red blood cells. For seven years, she came to Phoenix Children's once every three weeks for a blood transfusion. This past year, her body also stopped producing white blood cells, which meant that Hayley would need a bone marrow transplant. The transplant was performed last October at Phoenix Children's.

How has the disease affected Hayley's life?

Hayley has been transfusion dependent since she was four weeks old. She does not know a different life. Her bone marrow transplant was the first time she ever really had to stay in the hospital and she liked it because she got to have a TV in her room.  I'm not sure she has fully realized that not every kid goes through what she has.  She still has medicine she has to take and still has restrictions on certain activities.

How often does Hayley come to Phoenix Children's?

When she received her bone marrow transplant she was in the hospital for almost six weeks. She is currently going in once a month for follow up visits but has not needed a blood transfusion since October 29, 2007 - almost a year.

What is Hayley's favorite thing about Phoenix Children's?

The nurses and the Child Life specialists.

What has been the most difficult aspect of Hayley's hospitalization and treatment for her and your family?

Being in an isolation room for the transplant and being away from the rest of her family. You only have so much control of the environment you are in.  You can't cook in your own kitchen, go to bed in your own bed, or shower in your own shower.  It is hard to tuck your child in at night in a bed and room that is not theirs.  It just never feels right.

How has your disease affected Hayley's day-to-day life?

Hayley had to stay home for almost a year after her transplant, surrounded by her parents and toddler brother – painful for a 7-year-old. No school, no zoo, no swimming in the pool, no fast food, no restaurants, no play dates with friends, no church.  There were lots of "nos" and yet we had to ask her to do so much – take her medicine, do painful dressing changes everyday, mouth care three times per day, drinking 50 ounces of fluids every day and eating as much food as possible so she did not lose weight.  There were clinic visits two times per week for the first few months and one time per week, and then every other week. 

Is there someone, or some aspect of your care at Phoenix Children's that really stands out in your mind?

When Hayley was two years old, pediatric bone marrow transplant was not available in Phoenix. We were sent to Tucson to meet with a doctor to discuss transplant should she ever need one.  Can you imagine having to leave your home? Leaving our home would have added undue stress to our family emotionally and financially.

Because Phoenix Children's now offers bone marrow transplants, my husband was able to continue working. My son was able to stay in his own environment where he was most comfortable.  I was able to make sure the house was ready for Hayley when she was released from the hospital.  We did not have to worry about traveling back and forth from another city.  Our anxiety was lessened a great deal and we were able to focus on our family's well being.  We were able to spend quality time together never knowing if it would be our last. I had to take them to a facility I felt most comfortable with.

As we have been going to Phoenix Children's Hospital for the last 7 ½ years I was very confident in the quality of care we would receive.  If we had had to leave Phoenix we also would not have had the support of family and friends.  They were instrumental in keeping our family going.  The care we have received means everything.  I have my whole family today because services were available at Phoenix Children's when we needed them. 

Is there something that your illness/injury/disease has changed in your philosophy of life or how you look at things?

Every day is a blessing. Hayley has her days where she is a rotten 8-year-old, and it is so hard to discipline her knowing how sick she was. But it also makes me smile to have life returning to normal.  If Daddy has to discipline you get at least 10 kisses out of it and maybe a couple of cookies.