I have to go back a ways to last weekend (almost a week and a half ago). At the end of the first long week by Friday night/Saturday morning Mary developed a bit of a low grade fever. It would come and go but it was enough to make me a bit on edge. Fevers take on such new meaning when your child is undergoing chemotherapy. By Saturday night we decided to call about it. The down side was that I had a cough and had lost my voice so I had to hand the reigns over to David. This was huge for me and my control issues. The doctor felt she needed to be seen and tried to get us lined up at the ER close to home but it just wasn't happening. So David and the girl took off for the hour drive to the hospital that we have become all too familiar with. I tried to send them prepared as I could and tried not to think about the possibility that they might keep her over night. Thank heaven my mom was here to distract me. I waited, sort of not patiently, to hear from them. David was so good to send me texts to let me know what was happening. I had warned him to be nice. He would say things like, "they want to do..." and I would say "yes" or "no!!!!" Unfortunately there were a few "no!!"'s, and me not being there and having not voice made me go a bit crazy. And by "bit" I mean I was besides myself. The ER doctor supposedly had consulted with the oncologist but given the tests they wanted to run, and some they ultimately did (doing a catheter for a urinalysis, so not necessary!), didn't make me feel like they were following along too well with what the oncologist was asking of them. In the end they accessed her port and ran some antibiotics and they were home safe to me by about 3 in the morning. Needless to say none of us slept too well that night. But the antibiotics did the trick, thankfully, and she has been fever free since then.
The following Monday we were there again for the start of week 2. I shared my feelings about their experience in the ER. I really feel like there should be some sort of protocol for these kiddos who are undergoing chemotherapy. It's not your average fever, people. Apparently there is, it just wasn't being followed too closely.
Back to Monday, it was a long day to start our week. As expected her counts were low so after her chemo infusion we headed over to the hospital for a blood transfusion. She, as always, was such a trooper. Her food of choice, for the whole week really, was chips. We would walk into the cancer center and she would start asking for chips. Fortunately they have vending machine with her flavor of choice, nacho Doritos.
By Thursday she had begun to develop a few spots, petechiae, which indicates her platelets are low. They drew some blood and they were low, just not low enough for a transfusion. Since the particular type of chemo they've been giving her during these past two weeks is meant to lower counts, but sometimes not until 7 or so days after, they are anticipating all the lowness and transfusions. Tomorrow morning I will take her for a blood draw, here in town, which may mean another trip for blood or platelets or both.
Aside from her chip consumption her appetite has been so-so and drinking the same. However over the past couple of days her mood as improved greatly. She's back to walking holding one hand, and has started to entertain the idea of taking steps on her own. She's laughing, music to my ears, more and is more chatty.
If her labs look alright (she'll also have a blood draw next week) the first part of February she will begin Maintenance. What that means will have it's own post, once we get there. We've requested that she have another bone marrow biopsy at that time, she will already be sedated at her scheduled lumbar puncture. It's more for our peace of mind than anything else.
From there normal life will almost sort of start again for us. I'm having all kinds of anxiety thinking of it but trying to take deep breaths and focus on one thing at a time.
As always we will keep you posted!
Here's a few shots from the last week or so.
We were waving her bag of chips around to get her to smile, worked like a charm
We celebrated the end of the very long two weeks with a donut run
Sending SuSu back home, it was the perfect week for her to come
Love all the pictures, especially the last one and the happy chip girl.
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