We finally managed to break free of the hospital on Tuesday night. The Dr made a comment that she would let us go home that evening if Avery had not spiked a temperature by 7 pm....so of course we were monitoring that like a hawk. I think we took her temperature 52 times between 6:15 and 7:00 and while it wasn't "normal" - it wasn't 101.5 degrees so we were finally able to high tail it out of there. The Resident came in at 7:15 and asked if they had rechecked it and when we told him no but he could do it, he stated the nurse would handle it and then they would make a decision. Little did he know we were packed up and hitting the road no matter what. After almost 2 weeks and nothing growing in her cultures, we had decided that she has a cold and needed a good night's sleep in her own bed. Sure enough, here it is 3 days later and cold is gone. In the mean time, we discovered part of the reason she wasn't eating is because she is teething. 2 teeth appear to be coming in on either side of her mouth making eating a pretty uninviting option. This could also be a factor in the fever, all though all dr's agree that teething doesn't cause fevers. I'm pretty sure I could come up with a huge panel of parents that would disagree, but whatever. I'm not the one with the DR in front of my name. I do however have a pretty important title in front of mine....MOM. I'd like to see anyone argue that I don't know better about my kid.
Went to clinic on Friday to check her labs and told the NP Jen Sullivan, that we'd be very close to 500. She smirked and said "you think so?" -- 45 mins later she was in shock as she told me her ANC was up to 450 -- Um -- no DR, but pretty sure I am that good. I'm really not sure why they don't listen to me more. Seriously. She has C Diff, check it -- oh looky there -- she does! St Jude was really great about that. You always felt like you were a part of the team taking care of your child. Your input matters, and your opinion is important. I think that is the toughest thing about not working with St Jude, CMH just doesn't value what you have to offer as the person with the child 24/7.
Nana left on Wednesday and we were very sad to see her go. She sure keeps us on track and takes care of all the crap work so we can focus on Avery. I keep trying to convince her to move into the house across the street, so far she isn't biting. Avery just has a ball with her. I swear she keeps her so entertained with the most ridiculous of items. How you can play with 2 pennies and a broken eye glass case for 30 mins straight is beyond me, but she just loves it! Not to worry, Nana will be back soon enough. I managed to finagle her into staying an extra 4 days so it was about time I let her go home and sleep in her own bed and see the puppies.
Avery's hair has fallen out again. Not a big deal, but for those of you that have seen her recently, it may come as a shock when you see her. She looks much more the part of the cancer kid without any hair. Good news is it's now winter time....so hats will be a more tolerated accessory on her part when her head starts to freeze! Good thing for me because she will now be able to wear the ridiculous amounts of hats I have spent a small fortune on this year!!
The plan for chemo this week has been delayed. In order for us to start chemo her ANC has to be at least 500 -- that wasn't the case on Thursday due to her cold and all of our in patient stays. The soonest they could schedule us in for chemo is Wednesday of this week (don't even get me started on the scheduling). So Wednesday we will be admitted for fluids and then Chemo will start on Thursday and run through Sunday. Since it requires 24 hours of fluids post treatment, we will be inpatient until sometime on Monday evening. Avery did well with the first round so we don't expect any issues with this round either. Towards the end of the month, we will have another MRI and Lumbar Puncture to see if this chemo has helped at all. Once I have a firm date on that, I will let you all know. In the mean time, prayers for a miracle are still at the top of the list.
Some of you may have already heard about the upcoming fun, but in case you had not you are in for a treat! Some friends are putting together a terrific event for Avery. On November 20th we will be taking part in Avery's Amazing Day! Located at the Fraternal Order of Police in OP, there will be a pancake breakfast starting at 8 am followed by an amazing day of fun for the kids. Rumor has it there will be a Magician, a Moon Walk, A Balloon Artist, a musical guest, and lots of treats! Please join us in giving Avery an Amazing Day - she sure deserves it! Avery is very excited to see all her friends! If you have questions, please contact Nikki or check out FaceBook.