Although we are still not sleeping much, we have had a pretty good week. Saoirse has been her happy self, playing and laughing and mostly in good moods. Thursday she was feeling a bit under the weather, and was running a moderate fever, so we went down to the clinic and she got a dose of antibiotic. They didn't find anything in her blood, so she's probably just fighting of a mild virus (or it could be those darned teeth!). She didn't sleep much overnight (I'm pretty sure giving her the Zofran keeps her from sleeping), but she was feeling much better today. We had her pre-op appointment for her central line placement surgery, and all that went very well. Next week will be spent mostly in the hospital. Monday we have her regular clinic day, and then Tuesday morning we go in for her surgery. She will be admitted then and will stay for her 5 days of chemo. We are looking forward to the extra help this round for a couple of reasons. First, it will be my chemo weekend as well, and I will be having my sleepy/blah days over the weekend. Secondly, this will be her first round of the more intensive drugs, and I like that she will be watched for reactions and side effects by the nurses. As much as being inpatient in the hospital is inconvenient for working and comfortability, it is sometimes a relief from having to do everything ourselves at home. I will be talking to the doctors and nurses this round about other methods of side effect management as well. Saoirse seems to be hypersensitive to the oxycodone and zofran, and she needs to be getting more sleep. Depending on what some other options are, I may go a homeopathic route for side effect management for her. She can't not sleep for the duration of her treatment. We are going to need options.
Some of my friends are working on some fundraisers for us. We are so grateful for this. Mike is working as much as he can, but he has to be available for doctor appointments and clinic days, and he will have to be available when she has her transplants done. Needless to say, money has been tight, and all the traveling back and forth into the city, and parking, and doctor co-pays adds up quickly. We are so appreciative of the help we have received so far from family and friends. We are also getting help from some cancer organizations, and have been submitting applications to foundations with the help of Daisy, a resource social worker at Dana Farber. Some mom friends of mine have organized a Diaper Derby Fundraiser for us that will be held at the end of June (for more info click HERE). It sounds like a ton of fun, and I think it was a great idea for a fundraiser. We are truly lucky to have so much great support around us. We feel very loved. Thank you.