Nora 15

We had a scare this week. Nora was at the clinic and was playing and being her usual self when she suddenly had a sharp pain in her head. She said it was similar to an ice cream freeze that wouldn’t go away. Her hematologist had her transfuse some platelets in-case she had bleeding in her brain to clot it immediately. Light was making her headache worse and she started to feel nauseous and cry. It is not like her to complain, let alone cry, so her hematologist had her admitted to Stony Brook Medical Center for a CAT scan and overnight observation.

Her CAT scan came back normal but her headache wasn’t going anywhere. The doctors were nervous that she caught a bug since Shawn and Arik were both home with fevers and coughs. She was given fluids and nose swabbed to see if she was 1. needing antibiotics or 2. contagious and a danger to the other kids on the floor. Her labs came back and she has no germs at all—which was odd—guess those lymphocytes are killing everything including viruses not just her stem cells!

She still had the headache. So the Drs decided that a whole-blood transfusion was needed since her hemoglobin was at 6, not terribly low for her, (normal is 11-13) but we don’t transfuse until she drops to 5 hoping she will start to make her own red blood cells. But it seemed that she wasn’t getting enough oxygen which was causing the headache. The whole-blood really helped. By mid afternoon she was back to her usual self and we were discharged.

I held it together in the hospital but once we got home and I finished my work, I crawled into bed and slept 12 hours. When I woke up, I had a fever and a headache. Poor Shawn dealt with the kids with a fever and he cleaned and vacuumed! I’ll make him breakfast tomorrow.

Everything is back to normal now and we are doing great with our Swabapalooza hopefully one of the upcoming drives we will find Nora’s match. We most likely will be going to Cohen at L.I.J. in New Hyde Park to decide the next course of action whether its a partial match transplant or if we are starting over the immunosupressive drug therapy. Both have serious risks (partial match transplant she can reject and get graft vs. host disease) or if we are starting over the immunosupressive drug therapy (her kidneys can fail). We are weighing the options very carefully. We will not decide anything until she has another bone marrow biopsy and we can map it in high-resolution through the transplant center. We are still looking for that Perfect Match.

Thank you to everyone sending me information about all doctors, hospitals and transplant centers across the country. We have decided to stay close to home as we have the most wonderful support here. We are truly blessed to be surrounded by so many wonderful family and friends. We love you all so much!

 

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5 thoughts on “Nora 15

  1. Please join Caring Bridge. My son also had VSAA. If you would like valuable info., please visit http://www.caringbridge.org/visit/codymitro. I am sure you have done research, but if we had to do it over again, and we had the correct diagnosis up front (told us he had SAA) we would have let my son ride it out and die peacefully. I thought about this post and truly don’t wish to scare you; however, I would feel guilty if I didn’t. Prayers and thoughts ate with you during this difficult journey.

  2. My 11 year old son Kyle was diagnosed the first week of September with VSAA. They believe his was caused by an untypable hepatitis that he had the first week in August. We arrived in the ER at CHOP labor day weekend. His platelets were 4000- he was covered in bruises and petichia. After two bone marrow biopsies that week we received the news that he had AA. We are very lucky in that he has an identical twin (who was sick in August too) to be his match. He had his Bone marrow transplant on Oct 13, 2011. He is doing well. I cried reading your blog and will pray you get a match. AA is very scary. Kyle and I send all our prayers and good wishes to you. You can follow his journey on The Malmstrom Minute- FB. Keep fighting!! We are all stronger than we think!!

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