Tuesday, April 1, 2014

Hematology/Oncology 2014

Macy had her Hemonc appt last Friday. The last couple appointments Adam brought her because I wasn't able to (on bedrest with twins, etc). After this visit I think she does better when he brings her for some reason. She was fine until we got in the room. Once it was time to draw her blood she had a hard time. Usually in the past she would get anxious and upset (which is normal and expected for a child whose been poked and prodded so much since birth). But this time she actually physically fought back so she had to be held down. She was screaming "mommy no" over and over as she was crying hysterically. I almost got up and ran out of there with her. Breaks my heart.  Afterward she picked out her poke orange car. I was really surprised she didn't go for the Doc McStuffins puzzle, but she really wanted the car. 

Her blood counts came back better than they've been in about a year. So that's good news!  This is the first time she hasn't gotten sick in between blood draws so that might be why. 
Her hemoglobin looks good compared to what her bone marrow biopsy showed last Sept. She had low iron stores in her marrow. It was recommended we give her an iron supplement. We were weary because too much iron is bad for those with FA. Their bodies don't absorb it properly. After consulting with the experts in Minnesota we decided to try it. Now that her iron stores are back up we can stop the supplement. 

Her platelets at 116,000 is actually up a bit from what it has been in the last 6 months. Normal is over 140,000. Hers will keep going down until she has her bone marrow transplant. 

Her white blood count 8.9 is also better than the last 6 months which has been trending between 5-6. 

Her ANC has always run lower. Even when all her other numbers were in the normal range when she was a baby. Normal is over 1500. In January hers were 400 which is really low. 1070 is more her norm so it's good to see it back over 1000. 

Her next draw is in June. Hopefully we can go another 3 months without getting sick. That would be awesome!  Macy is Turning 4 this fall. I'm really struggling with the decision on whether to send her to preschool. I really want her to be able to have friends and go to school. I know she would love it! But being around all those kids scares me too. The more she gets sick the quicker her bone marrow will fail. It's a tough balance sometimes between letting your child live a 'normal' life and keeping them safe.  I will atleast have her take dance lessons this fall. We can pay extra for a more private class where there are only 2 or 3 other kids in the class. She loves dancing!!!  

The boys are doing great!!  Their reflux is under control now with Prevacid and they are on hypoallergenic formula (Nutramigen) which has helped a lot. It's just really expensive. So many have been so wonderful in sending us their Enfamil coupons. We really appreciate it so much.  It is helping a lot!  THANK YOU!!!

We took our first family walk (all 5 of us---plus the dog) for the first time last weekend. It was finally warm enough (high 40's) to bring the boys outside. So we used our choo choo train wagon and went for a walk. It was nice. Can't wait for warm weather to stay. We've been inside since the boys came home from NICU in November and we are getting a little stir crazy. 

Take care

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