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 within 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 then we tried an experimental drug called FTI. This drug worked wonders on his peripheral blood, but not his bone marrow.

In December of 2003 we were debating whether to attempt another transplant and if so how to get him healthy enough to withstand one. There was also a huge debate in our hospital because a third fully ablative transplant has never been done before or even in the US.

The day before New Year’s Eve, Jordan was clearly getting worse, blasts in his marrow were 78% and as we were discussing our bleak future, our doctor excused himself because he said he had received a phone call from a doctor at MD Anderson and wanted to discuss Jordan’s case. The phone call seemed like hours. When our doctor came in, he said: "There is an experimental chemotherapy that MD Anderson would like to try on Jordan". The problem was that we had to be in Houston in 2 days. With Jordan’s blast count so high and him being neutropenic, we knew we had to drive the long drive to Houston. My husband Jeff informed his employer that we were going and most likely be gone up to two weeks. Jeff’s employer was appalled that we had to drive and they did not want us staying in hotels that could make Jordan worse so they offered to fly us to Houston for Jordan’s safety.

After our first trip to Houston, Jordan’s blast count went from 78% to 30%! We were so thrilled that we went down there two more times. By the time, we got back from our third trip Jordan’s blast count was ZERO-for about 2 weeks. While in Houston, Jordan’s doctor checked both of our DNA to see how well we matched Jordan. The doctors also did an unrelated donor search for Jordan, just in case we did another transplant. We could not use his brother again because their DNA’s were too closely matched, therefore could not get the amount of GvHD that was needed to keep the leukemia away. We did find a matched unrelated donor from Germany and the beginning of Jordan’s transplant regimen started on April 14, 2004. As we were walking into the bone marrow unit with our suitcases in hand, Jordan said, "well, it’s time to puke!" He was so brave!

The transplant went well, but the good fortune did not last long. Jordan became allergic for a lack of a better word to all the medicines that he had before to help him through engraftment and GvHD. Jordan started to get high blood pressure, enough to be put on oral and IV meds to help keep it down, he developed HUS, VOD and mysterious white fluffy spots on his brain after having a grand mall seizure one night that landed him in PICU. Jordan developed Grade 4 GvHD and had to be pheresed several times a week to get the damaging cells out of his body.

Jordan became weaker so we had physical therapy come in and try to get him to walk but he was so tired the therapy was too exhausting for him. We started to notice some neurological changes in him and again found increased numbers of unexplainable fluffy white spots in his brain. The last MRI that we had done was the end of July of 2004. I was told early that morning, that this was most likely fungal infection. Jordan might not live up to six hours because it was located in the brainstem and we needed to sign a DNR (Do Not Resuscitate). I was devastated and completely lost my mind, how could I live without Jordan?

There were a couple of days where I was trying to get Jordan to speak to me again. It was like having an infant and I would say I love you really slow so he could repeat it to me. He did but it was hard for him, I believe those were his last words to me.

Jordan continued to decline to where he could not speak move or open his eyes, he was in a coma. About a week and a half after I was told that he would not live six hours, Mitchell came romping in the room (3 ½ years old at the time), hopped up on the bed and said: "Jordan open your eyes". Jordan did open his eyes; his eyes were as blue and crystal clear. Jordan looked at Mitchell, Jeff, Kathy and me for quite a long time and we were so elated that thought for sure he was going to live. (Now we know it was his way of saying goodbye). I think I skipped out to the nurses desk where Jordan’s PA happened to be and said: "Jordan opened his eyes and it was the most beautiful thing ever, are you sure he’s going to die?". "Yes, Susan he’s going to die" How can that be? He has no more VOD, HUS, GvHD, no blasts, no high blood pressure; everything is great-except for those white fluffy spots that was still said to be fungus. We waited and watched for another 2 ½ more weeks, we continued to play his cat videos over and over, watch his special shows even though his eyes were closed, we hoped that he was able to hear his favorite videos.

One morning I woke up and got into the shower early. Usually I waited for the doctors to do their rounds which was anywhere from 9am to 11am. This morning I thought I should get up and get going. While showering I had a wave of emotion telling me that today was the day, 18 days after they told us he would not live 6 hours. I came out of the shower and told Jeff and he said if you feel that way, then he would shower too. The doctors came in and chit chatted everything was normal with Jordan except he was in a coma. At about 11:30 I decided to pack up Jordan’s CAT trucks and keep the three favorites out of boxes because I knew he would want to be buried with them. I filled two very large boxes with CAT trucks and asked Jeff to help me set them on the floor. He did and after that, I decided to go to Jordan’s bedside to roll him over to prevent sores and just as I rolled him, he let out the biggest sigh ever (this was about 11:50), his mouth opened and his SATS started to drop like a rock. I called Jeff over to hold my hand, we knew what was happening and we pushed the nurse’s button. This time there was no, "Can I help you?" The nurse came in, took one look and ran next door to grab Kathy, Jordan’s favorite child life person in the whole world. Jeff and I stood right by Jordan’s head and Kathy and our nurse were standing close by, watching the SATS completely go to zero, then his heart stopped at exactly noon on August 18, 2004.

I believe in my heart that Jordan was waiting for me to be "OK" with his passing and as soon as I was done packing up his trucks, he knew I would be all right and it was his time to go…

In the end Jordan did not die from a fungal infection, he died of cancer in the brain. Because of this, the doctors learned a valuable lesson that no matter how much GvHD a patient has, does not mean it would automatically kill the leukemia. Jordan also helped approve the chemotherapy drug for Children called Clofarabine, now called Clolar. The first children’s chemotherapy has been approved by the FDA in 20 years. Jordan now has a medical paper written about him and his refractory cancer, and I am very proud to be Jordan Anthony G.’s mom!

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.