January Week 2

I'm finally taking a moment to play some catch up.
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

January Week 1

We are in the midst of two weeks of crazy, at least that's what I'm calling it.
This week and next week Mary has chemo infusions for days a week.
At the start of this, on Monday, she had a lumbar puncture. We opted to spend the night in the hospital to give us one less day of travel. It was a long day and a long night. I never go to the hospital thinking it will be restful, but still. She had a difficult time settling down. Then somehow her port access became dislodged. The nurse came in and tried to flush it and then pulled the bandage back, it looked ok. She felt the next option was to call IV Therapy (aka not my favorite people). After a few minutes with her fidgeting it fell out, or Mary "helped" it fall out. I held her for a few minutes and she feel right to sleep. Then I went to speak with the charge nurse about just leaving it out until morning. But she reminded me that it wasn't heparin locked so it had to go back in tonight. Otherwise the answer would have been yes. I wasn't even thinking about the heparin (maybe because it was 1 in the morning). Heparin is an anti-coagulant and each time before she is de-accessed, they push some in. This keeps clots from forming in the port. We then discussed some options. I told them, charge nurse plus our nurse, if they were comfortable starting ports than I would prefer them to IV Therapy. They were just fine with that. I had to put the numbing cream on her and then it had to sit for about 30 minutes. Remember, though, that I had just gotten her to sleep? Yeah, that. Of course the accessing part didn't go as smoothly as I'd like (it's kind of wiggly, which some people have struggled with). However I was able to get her to sleep afterward.
Then she was awake before 5. I handed her the iPad, at this point exhaustion was taking it's toll. She played for a little while then handed it back. I was, again, able to get her back to sleep. And she stayed asleep this time for a number of hours. I was able to get a little more rest before the doctor and nurses started coming in to do their morning rounds. The plan was for her to get another infusion of chemo then we could go home.
The two weeks prior to the start of this week she had been having diarrhea, gas and general discomfort. Which made for a very red bottom. I wasn't sure if it was something or if it was just a result of the meds she was on. The week of  Christmas she was on the steroid, which causes all kinds of issues. I realized two days after she was off it though that I hadn't been giving her pepcid, like I was supposed to, during that week. So that, I know, contributed to some of her problems. While we were at the hospital Monday they tested her for C Diff, as soon as the doctor suggested it I knew it was going to be positive. And I was right. After just a day or so of being on the medication for it she was doing so much better in the bowel department. Although as the week has gone on I'm afraid she might be swinging to the opposite end of the spectrum. Fortunately I've got all kinds of things to help with that.
Because of the C Diff and the steroid for a couple of weeks her sleep was, in a word, awful. Again this week her sleep has improved drastically. With all the coming and going she, and I, I think have reached new levels of exhaustion. I'm so grateful to have a few days of a break. And the reinforcements, my mom, will be coming in tonight.
Once we push through next week we have a couple of weeks of a break, just lab draws once a week.
Here's just a few snap shots from our week.

Like I said, we're exhausted!

The big kids had a day off of school on Wednesday (also Brother's birthday) due to the cold 

so they came with us for her appointment. 

It's becoming comical the number of pictures I've taken of her sleeping this week

Until a few days ago hot dogs were the flavor of the week. This is right after 

her lumbar puncture on Monday when she was finally able to eat.