Nora at one-year post transplant, two-years post diagnosis

It has been awhile since I sent an update. Nora has been on a roller coaster lately.

She had the flu for nearly 6 weeks starting in February, then she went back to school for one week and it seemed like she had allergies —sore throat, watery eyes— so we kept her out of school. She spiked a fever so we drove into Sloan and it turned out she caught a common cold which made the fever. Luckily we didn’t have to stay in the hospital and the doctors gave her antibiotics and fluids because her jaw hurt and was swollen. They thought it was TMJ or an ear infection…

The next day we went to Stony Brook and they thought because of her puffy cheeks that she had the mumps! Needless to say we were quite stressed. The good news was her numbers were the highest they had been since they started testing her blood—it wasn’t the mumps—and she responded to the antibiotics. Bad news is her platelet numbers have been steadily dropping. She is once again looking grey and covered in bruises. She also has some sort of weird rash on her eye and neck. Hoping it is ringworm and not graft vs. host.

On Thursday, May 23rd she got another bone marrow biopsy/aspiration to see why her numbers are still very low. The doctors are trying to figure out what is going on. We are looking for the chimerism test to show that her marrow is still the donors and she is just experiencing a hiccup from her illnesses. The doctors however are concerned that she may need a stem-cell booster from her donor. If she does, please pray he agrees to give her more.

Her one-year anniversary post transplant was May 24th and she spent it at the Ronald McDonald House with a bandage on her back but around people who understand. Her numbers dropped again on Sunday and her platelets are at 40. We are once again playing the waiting game to see what the tests say. Hopefully we will know more in June. She will be missing the pediatric prom which seems to be upsetting her more than anything else.

She won’t go back to school or having any play-dates until she is well again. Her immunity is like a baby’s. She has no antibodies to anything and has to build them up. If she doesn’t need a second transplant, we should still expect her to get sick a lot this summer. Until she builds up antibodies, gets off her medications, and can get her immunizations again, she is in real danger of contracting chicken pox, measles or polio which would be devastating.

Luckily Shawn has a few jobs lined up and my clients are very understanding. Thank God for everyone who gave and helped us through this, as we head into year 3 we know we would certainly be going into bankruptcy, or on welfare, if not for all the donations, love and prayers of all of you. We can never repay all your kindness and generosity we just love you all so much.

So that’s where we are…on a good note Nora’s first communion was May 4th attached is a picture of her in her dress with her thick wavy brown hair. She was so lucky she was chosen to carry the gifts! She was able to go out on Memorial Day to see the parade. We stayed far from most people and she went without her mask because she was in the fresh air—which was lovely—everyone was so happy to see her about town. : )

We pray for a safe, healthy and happy summer for all of you.

Love the Getchell’s



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