So there we were, with our orders to come back to our beloved Iwakuni.
But alas.....a few weeks later we were informed we should be going to Okinawa instead of Iwakuni.
It took a few weeks, and some convincing, and some really good friends (hehehe) but we finally got confirmation it was definitely Iwakuni.
The moment I heard 'Japan', I made an appointment with her pediatric hematologist/oncologist. See, Eden has a condition called Chronic Benign Neutropenia.
We've been clinically following her condition for almost 2 years. It's a sort of nonsense thing. It's a childhood autoimmune condition that resolves itself spontaneously in about 1-2 years. There's no treatment, no medication, no signs or symptoms. It's always caught on accident, looking for something else.
Edens condition was caught because she had hand foot mouth disease at the time she was getting a routine blood draw to check for infant anemia. Because the HFM is a bone marrow suppressing virus, all her blood counts were scary low, and we were rushed to the Walter Reed Clinic to test for Leukemia.
Luckily, all her tests came back negative, and perfectly normal. We were monitored for a few weeks to make sure her blood counts came back up properly after it became very obvious she had a virus during the initial blood draw that triggered the concern. Everything came back up except her neutrophil count, which stayed around 0-200ish. A normal count is 1500.
After some time, and more blood draws, we learned she had antineutrophil antibodies, which helps confirm the diagnosis of chronic benign neutropenia. She had to have a bone marrow sample taken to really nail that diagnosis. And it was confirmed. Her bone marrow is perfectly healthy and making all the blood cells her body needs.
So what does Chronic Benign Neutropenia mean for her? Neutrohpils are the bacteria fighting white blood cells. Her blood draw count is low, because even though her bone marrow is producing and releasing them into her bloodstream, she has the antineutrophil antibodies that are destroying them in her bloodstream. At some point in her first year, she got sick (it might have even been when she got the HFM disease), and her body got confused and began producing these antineutrophil antibodies. It takes a little time, but we know this condition is temporary and the body figures itself out and eventually stops producing the antineutrophil antibodies.
In the past two years, if Eden ever had a fever, we had to bring her to an ER and determine if it was a bacterial or viral infection. Because she is vulnerable to bacterial infections, the concern was that she would get a bacterial infection and it could get out of control quickly. The worst case scenario would be that she would need......antibiotics. That's it. In the past two years, however, she's only had to go three times total, and they were all viral infections that resolved the next day. She hasn't had a fever since last March.
Because we have this long history, and we have blood counts of what her body does when she's sick, our hematology team at Walter Reed was not concerned with her going overseas. In January, she scratched her cornea. We gave her the eye ointment, and her hematologist wanted to see her for the follow up. When we brought her in, he was very impressed with her healing quickly and well. He mentioned corneal abrasions can get bad quickly when the body doesn't heal properly, but she got through it just fine. He was convinced she would pass overseas screening, especially to Japan, a First World Country with excellent medical care. He promised to help us get through it, write anything we need, and be in contact with the overseas screeners if they had questions. It was at this appointment that he let us know the Hematology team at Walter Reed decided she was cleared to discontinue specialty care. He wanted one more blood draw in the late spring as we leave, just to see where she's at, but she was completely done with their care and could continue with routine pediatric care from now on.
Filled with confidence and letters from her hematologist, I got everything ready for the overseas screening process. All the dental appointments, all the medical appointments, any vaccines we needed....everything.
.....And then we were at a standstill.
Greg had to have a five minute phone call to be prescreened. First there was a snowstorm. Then he was on the range. One thing after another happened until we FINALLY got things moving again.
And then everything we had wasn't good enough.
So then we filled out MORE paperwork and forms. Went to the Naval dental clinic because our civilian one wasn't good enough. Asked our doctors to sign MORE papers. Rescheduled the overseas screening appointment.
But finally.....finally.
We got all our overseas paperwork completed, signed, approved to send to the overseas screener in Japan. As far as Edens Chronic Benign Neutropenia, they said not to worry about it because she was not enrolled in EFMP (Exceptional Family Member Program), so her doctors obviously didn't think it was a concern.The letter from her hematologist clearing her from any specialty care should be enough, as well as the note in her medical file from her regular pediatrician confirming she was finished with any special treatment.
And then it was time to wait.
........sort of.
-Happy Sewing!!
Shelley
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