NOTE FROM THE MACS STAFF

Jordan's story has NOT been updated yet since he passed away on August 18th, 2004. We will update the end of his story as soon as we receive more information from his family.

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Jordan's Story
written by mom Susan

When Jordan was about 6 months old I noticed a spot on the top of his head. It was round, flat and orange. One month later or so another one developed on his forehead, I thought because of the color I must had been giving him too many carrots so we saw his pediatrician and he referred me to a Dermatologist. The dermatologist did not know what they were so we were sent to the Mayo Clinic in MN.

They did a biopsy right away and said it was Juvenile Xanthogranuloma. Another sign that they look for with this disease are certain light brown birthmarks. Jordan had two and to have this other disease you had to have 5 or more. They said good thing because this other disease wasn’t good and they never told us any more. The disease is called Neurofibromatosis (NF1). They sent us home with paperwork regarding Juvenile Xanthogranuloma (JXG). We read it but trusted the doctors with their diagnosis.

When Jordan turned 2, we put a sandbox outside for him and he began coming inside with what looked like gnat bites. We kept taking him to the doctor and we went to another Dermatologist and diagnosed him with Eczema. The doctors pegged him about his personality so we took the cream and on we went. The cream did work for a while. Then Jordan began bruising a lot but we justified because of the sandbox and the stuff he was playing on. I became pregnant with our second child and Jordan had an ear infection so I took him to the doctor and it was a new doctor that said to me "Did you know that Jordan has a heart murmur?" I said "No, we are in here all of the time and no one has said anything". So we take him to a Cardiologist and found out he indeed had a heart murmur and it was one that he would not grow out of.

By the time Jordan was 28 months old, he had chronic ear infections and seemed to be sick all of the time. He would go to pre-school one day a week and be sick for 3 days. On Christmas we thought he had bronchitis, he was so sick. The doctors sent us home with cough syrup and said it was a “Virus”. Jordan eventually stopped walking up and down the stairs and wanted to be carried. Through this whole time Jordan would NOT gain weight. I had him in all of the time for his weight, I took him to see a nutritionist and nothing helped. He just wouldn’t eat. I justified it because he had been on so many antibiotics that it made him not hungry. Jordan’s pediatrician would justify it by saying, “You aren’t very big either.” Ok, makes sense both my husband and I are small. But, it still bothered me, everything did.

A couple of days before Easter Sunday, Jordan was at school and received at rubber stamp with ink on it. He of course stamped his face and when I washed it off (I used a baby wipe) he had gotten a red rash. And I explained it to the teachers it was his Eczema. Jordan became very sick again, cold, ear infection and through out these months, I asked the doctor, “Does he have RSV?” “ No”, he said every single time. But later towards that week Jordan would cry all night long, so we’d take him for car rides at 2am because of his ear infections. Sometimes I’d rub his back but he had always wanted me to rub his stomach. Somewhere along the line his stomach was getting the toddler stomach look and I was glad about that because that meant he must have been gaining weight. My husband took Jordan to the doctor on Easter Sunday. The doctor noticed the red spots on his face, wasn’t Eczema it was Petechiae which are tiny areas of bleeding under the skin, usually due to low platelets. That was the only thing that prompted them to do a blood test, other wise he would have gone home with more cough medicine.

They did a CBC and found out his platelets were 30 and his WBC’s were 56k. The first thing out of my mouth was "Did the doctor say anything about Leukemia?" Jeff said hotly “NO!” They told us it was probably Meningitis. Later that night slowly the gowns for sterilization came off the nurses and the doctor came in and mentioned Meningitis or Leukemia. Our hearts sank because I knew that it was Leukemia. I had to go home that night and take care of our 3½ month old Mitchell and go back down first thing in the morning. When I got there Jordan’s regular doctor was there and said it was probably leukemia. Jordan was ambulanced down to Iowa City’s Hospitals and Clinics and I had to follow in our van. He was admitted, and they did a bone marrow aspirate and a biopsy. The results took FOREVER. Jeff and I were trying to get our minds around Leukemia. We had a friend that had a daughter with it and she’s doing great.

While we were waiting someone told me that with a WBC count higher than 50k it’s usually a worse Leukemia. We weren’t prepared for the news we received. Jordan was diagnosed with a rare form of Leukemia called Juvenile Myelomonocytic Leukemia. (JMML) It affects about 1% of the children with Leukemia. The only cure for him was a bone marrow transplant and the cure rate would be less than 40%. That’s with a matched sibling donor!! Mitchell ended up being a match and at 5 ½ months he donated as much bone marrow as he could to Jordan. Jordan relapsed 9 months later and Mitchell donated Lymphocytes. This did not work. We went to transplant with in 2 days of one year of the first one. The second Stem Cell Transplant was even worse than the first one. Jordan spent his 5th birthday out of the hospital and had a great summer, but he has relapsed again in September of 2003. We gave a big dose of Lymphocytes and tried a drug called IL2. Didn’t work and now we are using an experimental drug called FTI.

Hindsight: All of the symptoms including JXG, heart murmur because he was so anemic, bruising because of low platelets, his big tummy because of very enlarged spleen and liver, not wanting to walk up and down the stairs because his bones were so full of Leukemia. He DID have RSV at diagnosis and the one thing that bothers me the most was; it states on the papers that I received from the Mayo clinic about JXG and it says usually when kids are diagnosed with JXG they are usually diagnosed with a Leukemia and one of them was JMML.

We are unsure at this point what the prognosis is. He’s using this experimental drug, but the doctors have told us many times that we are running out of options.

Letter we received from Jordan's family after he passed away:

Dear Alexandra and Friends,

Our family would like to extend a very heartfelt thank you for the contribution that you made which helped pay for Jordan's Funeral expenses.

We would also like to thank you for all that you have done for us since we found you in October. Jordan's quilt made by Love Quilts is so beautiful; I wish he was here to appreciate it.

Thank you to all that have read your website and sent Jordan mail. Jordan was always thrilled with the loads of mail that he received, it brought smiles to his face, and Mitchell's every time, which touched my heart quite deeply.

You have a wonderful organization and we appreciate everything that you do for all the children with an illness, it certainly has made a huge difference in Jordan's life and with our whole family.

With love and gratitude,
Susan, Jeff, Angel Jordan, and Mitchell G.