My Story

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Or contact David Cutler (Claire’s uncle) at

When Claire was about 6 weeks old we had to take her to the ER because she was having a hard time breathing and was looking very pale. When she got there, Claire "coded" and doctors frantically tried to figure out what was wrong. First, they thought she had a bad heart, then internal bleeding, finally, they realized that her problem was her bone marrow/blood. She had very little of it. A couple of hospitals and ambulance rides later we ended up in the infant ICU at Children’s Hospital. After many tests and several transfusions they diagnosed Claire with a very rare condition called Diamond Blackfan Anemia (DBA). Basically, she doesn't create her own red blood cells. So a little Hematology 101. Basically your bone marrow creates 3 types of blood cells. -Platelets-which cause the blood to clot when you get cut. -White blood cells-which help you fight disease -Red Blood Cells (RBC's) which carry oxygen to the body. The way we measure the amount of blood in Claires system is to get a Hematocrit count. A healthy persons Hematocrit level is about 40-45. A patient undergoing chemo and radiation, and therefore has a very low Hematocrit level, could have a level in the teens. When we initially took Claire to the hospital, her Hematocrit was at 6. The doctors are amazed she survived. Typically, the doctors will transfuse Claire when her Hematocrit drops as low as 25. Claires Platelets are fine. Her White Blood Count fluctuates more than it should and is typically lower than normal (a condition called neutropenia). This is the reason we try to minimize her risk of exposure to germs or disease, (thus her (and Debbies) infrequent church attendance). There are two different treatments for DBA. 1)Chronic (ongoing) transfusion therapy-a patient gets transfusions once a month or as dictated by her blood levels, or 2) steroid treatment where the patient is given prednisone in hopes that that will increase/initiate RBC production. Most people use a combination of both. They take the steroid to augment their natural blood production, thereby increasing the amount of time between transfusions; some respond to the steroid well enough that they only have transfusions every few years or more. We have tried two rounds of steroids but Claire didn't respond to them at all. So for now Claire is transfusion dependent. Although Transfusion therapy can be a viable longer term, there are other side effects that make it quite difficult. As people produce RBC's they recycle iron in their system. Since Claire doesn't produce RBC's the iron builds up. We now monitor Claire’s Ferritin level which measures the amount of iron in her system. When that level gets consistently over 1000 we will start a procedure called chelation. Chelation is a daily injection/IV of a chemical that binds itself to the iron in your system and removes it. This process takes quite a bit of time, between 9-15 hours, so is usually done while the patient sleeps. Claire also has had a couple reactions to her transfusions recently. The doctors are not sure what is causing the reactions, but they are taking steps to ensure that those incidents are minimized. In August, Claire underwent an MRI to help understand some developmental delays her doctors and therapists were noticing. They discovered the myelin pattern development in her brain was delayed. Myelin is the sheath that covers the nerves in the brain and spine. Much like insulation on an electrical wire, the myelin improves the signal as it travels down the nerve. This myelin facilitates the brains ability to communicate and control the rest of the body. The good news is the judging by recent progress Claire has made, we think her development, although delayed, is improving. That is a good sign. The biggest challenge with Claire is dealing with the uncertainty. The uncertainty of her diagnosis. The uncertainty of what the treatment would be like. The uncertainty of what the future holds. But we are continually and tremendously grateful for the wonderful joy and happiness that Claire brings to us daily and the outpouring of love and support we continuously receive from family and friends.


Mike and Debbie Calhoun posted a new journal entry, "Lessons Claire has taught me.".

I don't post journal entries very often but since today would be Claire's 9th Birthday I thought I would share some memories and lessons from Claire. ... Read more

Shelley Chapman signed Claire's Guestbook.

Mike and Debbie~I have just read both of your recent posts this morning - beautiful tributes both and a wonderful way to start this day with loving thoughts of Claire.  ... Read more

Melissa Norman signed Claire's Guestbook.

I was just reading to my daughter last night and one of her favorite books is one the Cougar Ridge kids made for me when I was out on maternity leave over 2 years ago.  ... Read more

Mike and Debbie Calhoun posted a new journal entry, "The Year of Angel Claire".

Tuesday, April 15, 2014I’ve tried to write a post many times over the past year, without success.  The thought of sitting down and writing my thoughts about Claire and ... Read more

Mike and Debbie Calhoun posted a new journal entry, "Celebration of Claire".

Tuesday, April 15, 2014I had wanted this to post on the anniversary of Claire's pasing, which was Saturday, April 12th, but due to technical difficulties with ... Read more

Rebecca Bennett signed Claire's Guestbook.

Debbie,I just wanted you to know that I'm still thinking of you and your family and sending lots of love your way. Read more

Ronnie and Jodee Chapman signed Claire's Guestbook.

Not sure why but I needed to see your sweet face today. So I came here. Wish I could see that smile in person and get an awesome hug. Thanks for continuing to give me ... Read more

Vincent Misiti signed Claire's Guestbook.

Dear Claire: Just wanted to let you know that Domenic finished his chemo treatment yesterday (and then promptly woke up with a miserable head cold today...what luck ... Read more

Mike and Debbie Calhoun posted a new journal entry.

I'm purposely sharing quotes, parts of talks, because as of yet, my feelings are too tender to put to words. The strength of others and their thoughtfulness carries us ... Read more

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