Life is wonderful and difficult... and I am grateful!

Wednesday, November 30, 2011

Angry

Tonight I am angry and sad. I feel ashamed for how mad I am and yet I cannot deny it so I may as well just go with it until I wake tomorrow and start anew.
I posted earlier today about how grateful (oh my goodness, how very grateful!) I whenever we visit the Hematology/Oncology office. What a lucky mommy I am to not have a child who has cancer. I cannot even imagine. Actually, I can because of walking it with friends, but it is much different to imagine it than to be living it yourself. How lucky indeed to not have a child with cancer; I think it each and every time I am there.
I am angry though that we have to be in that office. I am angry today because a third bone marrow aspiration has been scheduled for my Liz. I do not like the words "marrow" or "blasts" or "transfusions" or "leukopenia" or "thrombocytopenia" or "anti" or "failure." And I have decided I now hate the word platelets. At least I have a partner in crime who hates the word too, and it's always better to dislike something with a friend, so I'll take that as a positive. Right, Katie?
I just can't believe that we have to do this again. Even more, I can't believe Liz will make a fourth trip to the OR in just three months.
The bone marrow aspiration is being done for a few reasons. First, her other two bone marrow aspirations (BMA's) showed that she is hypocellular. Not good. Her marrow, based on her age, should be about 85-90% cellular. Hers was 15-20%. Our marrow makes our cells, and she should have a better functioning marrow than she does. So, we have known another sample would need to be taken at some point, we were just thinking it would be further out. Second, she is testing positive now for anti-platelet antibodies. Her last marrow sample should have shown that, and since it didn't, but her blood now does, the Hem/Onc doctors think her marrow may have changed and so they need to know what it is doing now. Along the same line, since she has been so much more sick with infections, it is a good idea to see what her marrow cells are doing. So, she'll have it done on Monday morning.
After she gets out of recovery, she will be taken over to the Infusion "Day Care" to have her first round of IVIG. That will take about 2-3 hours to run it's course and then we'll have to stay for a bit to see how she reacts to the infusion. Frankly, it will be a difficult day for her as she had so much pain after the last BMA and the reactions to IVIG after the first round of treatment are not pleasant.
Some tough stuff.

I got even more angry tonight as I drove past her school. I had the thought "this was the year I said Liz and Kate could walk to school", and it makes me sad that isn't happening. I just want our normalcy back.
I have also been upset because Liz has no social life; no friends it seems. She isn't going to school or Sunday School and she isn't going to ballet. There are no support groups for her diagnosis and when she is hospitalized, she is in isolation so she doesn't talk to other kids there. It just isn't right. Her "best friend" bailed as soon as Liz wasn't able to have play dates anymore. Always Miss Popular, her classmates don't call anymore either. They are only 10 for goodness sake and they can't understand or be as supportive as adult friends are to us.
The other day as we were leaving my sister's house, Liz leaned down to Taylor and said "you are my best friend, right Tay?" Uh, my heart sank. Her four year old cousin should not be her best friend. She wouldn't have been just six months ago.

My sister encouraged me by reminding me how great the IVIG should make her feel and how once her immune system gets a jump things will change. Her body will be better and she can get back to school and church and friends. You all know how much Liz thrives on being social.

Angry is a yucky thing to be..... tomorrow is a new day and I refuse to be angry when I rise. Refuse I can do.

No comments:

Post a Comment