The Haircut

On the morning of March 14th Elizabeth gave me a surprise. I was tired after spending most of the night up with Elizabeth since she was having a hard time sleeping (steroid side effect). When Elizabeth got up I laid in bed longer trying to catch a bit more rest. Elizabeth then came into the room and excitedly asked me how I liked her bed head. Without my glasses on I simply glanced over and said it look great. Elizabeth then came over to my side of the bed and said she did it like mine. I sat up, put on my glasses and saw that she had a small patch of hair hanging unattached.

I felt so devastated!

I then did not react very well as I told her that she is not supposed to cut her hair, and that I would be taking the scissors away. And I did.

I then came back into the room to a sobbing Elizabeth that was telling me that I had broken her heart. Seeing this I went to Elizabeth and gathered her into my arms and apologized to her. I knew that more was going on and started talking to her about what she was feeling when I reacted the way I did. I then asked her about her reasons for cutting her hair.

Oh, my! During our talk I went from feeling so sad and angry to feeling my heart swell with such love and gratitude for Elizabeth.

The reason for Elizabeth cutting her hair was because she has been wanting to cut her hair like I did in the hospital back in July. Her hair had fallen out, but we had cut mine. She wants to do what I do and be like me.

As we talked I found that Elizabeth does not want to cut off all of her hair, and really at this time wants to grow it out with me. But we have made a plan. Elizabeth decided that she wants to grow her hair out until it reaches her wrists, and then cut it off to the length that it is at now. So that is our plan. For now.

I do have to say that it is really hard to see where she cut her hair. I actually have only been able to find the spot twice. Thankfully it wasn't much that she cut off (more like trimmed), and with the way her hair is right now it blends in beautifully.

6MP & Elizabeth

As we went through the craziness of the first phases of Elizabeth chemotherapy treatment, we kept hearing about the final phase (Maintenance) and had envisioned how it would go. Doctor visits once a month, pokies once a month, higher immune system, less concern about Elizabeth being around people, regular church including Elizabeth going to primary like other children her age, lots of play dates, and so on.

Well, we found that it was not to be just yet.

In the fall Elizabeth went to the hospital each month with fevers. Her ANC kept dropping lower than they want it to be during this phase of treatment, and they also saw that her antibodies were really low. So in October we stopped giving her chemo to let her ANC recover, and she got her first IVIG (antibody transfusion).

During this time we learned that when Elizabeth started treatment back in October 2012, the doctors had done some genetic testing and found she has one gene that likes to hold onto the 6MP (the chemo pill she takes every single day). Since she didn't have two it was possible that it wouldn't effect her, but we found that it does. All this does is hold the 6MP in her cells longer than usual. This is probably why her ANC kept going lower than wanted.

When she started chemo again she started at only getting half as much 6MP as she was  (her Methotrexate dose that she gets once a week was also halved). As we figured out how much 6MP Elizabeth's body could handle she needed to get labs checked every other week. They also keep a watch on her antibodies, and she has been needing an IVIG about every other month.

Since the changes Elizabeth has not needed to go to the hospital except for her regular LP's that just has us there for a few hours instead of a few days.

Elizabeth is currently getting 75% of the 6MP and 50% of the Methotrexate. She's been getting this dose for a few months now, and when I asked her doctor last week if she still needed labs checked every other week she said she was okay going to once a month (really it's every four weeks). Yay!