We have had a super week! We started off the week with the arrival of Miss Angie who was just a blast and brought with all kinds of goodies for both Me and Avery to play with. We "got our craft on" and made some adorable hats and hair clips for Avery....which she will promptly pull off her head, but we don't care!
On Wednesday, we met with the Radiation Oncologist to discuss our plan for radiation that believe it or not, will be starting in just 6 weeks! Dr Merchant and his team were very informative and helpful in helping us understand the process for radiation. At one point in the conversation he indicated that Avery was "going to make it" as she had had her tumor resected entirely and was a viable candidate for the Proton Therapy in Jacksonville. Although we already knew that in our hearts, it was so great to hear it from one of the Dr's a loud. Radiation can also be very similar to chemo in that the short term side effects are the same...hair loss, vomiting, loss of appetite, etc. Long term side effects are also possible and most likely include development issues in someone her age. This is something they will be monitoring for the rest of her childhood and addressing as needed. Overall, we feel really good about the decision to move forward with radiation.
Avery has been on the move much more this week as well. She has been crawling a few steps at a time here and there and we have every reason to believe that she will be crawling all over get out before too long! She is already obsessed with pulling herself up on everything -- the couch, the chairs, the crib. This is just about the most fun she's ever had, all the while giving me a heart attack each time she does so. Her counts are at 300 today, so nuetropenic and no crowds. She absolutely hates her mask...once again I will be making a lot of money some day for my creation of child masks that fit. Since this is the case and Memphis is crawling with allergy inducing air -- we will most likely be spending the weekend indoors! Not to worry though....I have plenty of hat crafts to keep me busy and Jeremy and Avery can practice crawling more.
Next week we await the arrival of Jennifer from MN and then later in the week Aubrie from Des Moines. Both will prove very helpful and entertaining I am certain! Hopefully she will not stay down long and her counts will rebound around mid week next week. We'll see. I anticipate a need for platelets on Sunday and I am sure we will need another Hemomglobin transfusion by Wed so we'll be busy!
The coolest thing we did this past week was meet Patrick Wharburton, the comedic actor on Rules of Engagement and the voice for Buzz Light Year in the cartoon. He plays the big jock-looking guy, who is almost always lacking in intelligence, but we love him. He was at St Jude on Thursday and we listened to him read a story and answer the kids questions. (one kid wanted to know how old he was) We had to giggle when the kids continued to ask him about the movie Toy Story (buzz light year is voiced by Tim Allen in the movies -- Patrick did the cartoon that ran on disney) Over and over again they asked about the movie and talked about the movie and he finally gave up when a kid asked him to autograph his movie. He He He. Avery got her picture with him of course -- he totally had no idea what to do with her but she was comfy and smiling. Today, Dora and the Backyardigans were here - we missed them but that was the talk of the hospital all day. Thankfully Avery doesn't understand those things yet so she wasn't disappointed.
Well, I better get the Munchkin up so all of us can get a decent night sleep tonight -- otherwise she'll be up till midnight again!
Jenn
Oh man...What a lucky girl to be sitting on that man's lap! I think he's so good looking and Rules of Engagement is one of our favorite shows...thata girl Avery...thata girl!
ReplyDeleteAlways thinking of you guys! It is just such a blessing to hear everything is going so well. When you guys get home and settled in KC we can't wait to make a trip down to see you all!
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