September 6, 2011

3 months, 1 day since diagnosis
day #1 of current hospital stay

We're back at the hospital. We were only one day from going to Boston and Riker spiked her first fever. I don't even know what to say.

She was getting cranky yesterday and woke up often last night. When she woke up it was a full on scream every time. I was pretty sure something was wrong - I knew she didn't feel well. I checked her temperature but nothing was out of the ordinary. Then it happened. Late this morning, her temperature was up to 100.3. I had been packing for Boston and there were clothes everywhere. The house was a mess.

I tried my best not to panic and called the Maine Children's Cancer Program (MCCP) to find out what to do. They told me that the "magic" number I was waiting for was 100.5 and that I should call back. I ran around the house gathering things I knew she and I would need if we were admitted to the hospital. I picked up around the house the best I could. The next time I checked, her temperature had risen to 100.7. The oncologist had decided I should drive her the 40 minutes to Portland and be seen in the ER.

I kept it together surprisingly well but asked my brother to drive me so if I did lose it, I'd have someone else driving. I reminded myself of all the things I had been taught about the ER - I would need to advocate for Riker since they so often do not know how to handle a cancer patient.

When we arrived, I had to request that she be seen immediately. The receptionist directed us to the pediatric area where dozens of apparently sick children were. I reminded them that she has cancer and cannot be around sick people. When we were allowed to be seen right away, sure enough, they requested a rectal temperature. Thankfully, I only had to remind them that she had cancer for them to agree that auxiliary would be the best method. Finally, when they did blood draws, I didn't get any trouble about them using her central line. I most certainly would not have allowed them to pick her.

Surprisingly, Riker did not have what they consider a temperature by the time we got to the hospital. It was high for her but not high enough to indicate any major problem. They did give her a dose of antibiotics, just in case, however. They will also grow cultures to see if she has any infection. Because she is so close to transplant, they admitted her for the night for observation. We will not be going to Boston tomorrow and I am not sure when they'll reschedule us to go.

So here I sit - back in the same room we've grown so accustomed to. Riker is finally calm and resting. I have a feeling it may be a very long night. She has been doing a lot Oddly enough, although it's driving me crazy that we have such a problem right before transplant, I am grateful we have this problem before transplant. All her symptoms might have been attributed to the chemo. Also, her immune system is nearly normal making all of this a whole lot less scarey. Most people go through this with their babies. And, I actually think this all might be her teething. The only time that Valentine had a fever was when she was teething.

With any luck we'll be home tomorrow with a night or two extra to spend as a family. If we're really lucky, Jon will feel better and we can enjoy him, too. I can spend a little quality time with my husband and both my daughters before we head out on this big journey.