I have FANTASTIC news: I AM FINALLY HOME!!! After spending over a month confined to a single floor of the hospital (because my immune system is so weak, I wasn't allowed to leave the floor at any time throughout the month), it feels INCREDIBLE to breathe in sweet, amazingly fresh fall air! Of course, I will only be home for about a week, depending on how my counts are with regular check-ups back at the hospital. After the week at home, I'll have to go back for another round of chemo, which will last about a month again. Leaving the hospital took FOREVER...doctor after doctor after nurse after social worker had to come see me before I was discharged, not to mention having to get my IV meds and clean everything out of my room. I was incredibly antsy and could barely sit still all morning! After a while, I was actually so overwhelmed and stressed from waiting that I went down to the child life room I blogged about last post and did some coloring to feel better. I was so glad that I went down there, because as my Mom took care of my prescriptions and took the first load of stuff down to the car, I got to meet a couple of other oncology (fancy hospital word for cancer) kids: an adorable little two-year-old boy named Jedediah (Jed for short), and a really sweet 12 year old girl named Jess. The floor we're all on is just a general pediatric (kids) floor, so it's not just for kids with cancer; pretty much every kid who's admitted to the hospital is on our floor. Because of the variety of cases on the floor, us oncology kids definitely have a special bond. We're always back and forth to the hospital for treatment, like chemo, and we all share a lot of the same struggles. It was so great to talk to Jed's dad, Jess, and Jess's mom, and Jess even taught me how to finger knit, which is such a fun activity to make the time pass! I talked to the two families about being discharged, and they both definitely sympathised with how frustrating the waiting process is. I was so relieved to not be thinking about when I would get to leave, and soon enough, the nurse and my Mom came to get me to go over the last set of instructions so I could go! When I stepped out into the amazing autumn air, every second of agitation over waiting vanished. I breathed in as much of it as I could through my mask, and once we got to the car and started driving, I stuck my head out the window a little to get as much air as I could. The trees we saw on the way home were absolutely gorgeous as well! Since it was still summer when I came to the hospital and I was in shorts and flip flops, it was crazy that a new season had come so quickly. I like fall though, so I was smiling almost the whole ride home...even with the traffic. :)
A note about visiting: now that I'm home, I know that a lot of people will probably want to visit, which is so touching! However, I will need to limit visitors because now that I am out of the hospital, it's even more important that I stay away from as many germs as possible. Since I am still recovering from chemo, still on strong meds, and still SEVERELY neutropenic (like I said yesterday, a word that means my immune system is shot), I may not be able to visit with many people depending on how I am feeling. PLEASE still call ahead if you would like to visit and my family will let you know if I am feeling up to visitors on a specific day. IF I am feeling up to it and you can visit, here are some guidelines to help you know how to best help me!
1. Any visitors need to be in absolutely PERFECT HEALTH!!! If you even have a small runny nose or any cold symptoms, visiting unfortunately has to be a no-no. Colds are actually one of the worst illnesses I could get because they can't be treated with antibiotics, and my body has absolutely no way to fight off a cold. So if you even feel just a tiny bit sniffly, let's skype or facebook instead!!
2. Before coming into my room, my Mom will direct you to hand sanitizer for your hands, and we may ask you to wear a mask and gloves. Again, this is just so that any little hidden buggies won't find their way into me!! Also, and this is the very hardest for me since I am basically the biggest hugger in the world :), but hugs may have to be a no-no as well. Germs can hide on clothing and unfortunately I just have to take every precaution I can! My family and I have been doing "hand hugs": holding both hands together.
3. I know I said it above, but just a reminder: please call one of us before visiting!!! If you call my cell and I don't respond, I may be sleeping or just having a rough day and not feel up to visitors. I will do my best to see as many people as I can, but my body is being a little unpredictable at the moment.
This is SO, so hard for me because I honestly want to just have every single friend and family member around me to hug and talk for hours and hours with! If you know me, you know I am a total social butterfly. :) However, part of this fight is being strong enough to make tough choices about when I need to rest and be alone, and even tougher choices about how to adequately control possible germs I could be exposed to. Please know that I still love each and every one of you just as much as I always have, but I have to make my top priority taking care of myself and not catching any illnesses.
I am BEYOND happy to finally be home...yay!!! Time to spend time with family, but as I said before I will have lots more pictures coming soon!
As always, love love and more love!