Saturday, September 25, 2010

Always Learning Flexibility

This week has been full of fun and family and togetherness. I'd like to say it was all blissful, but there was plenty of crankiness along with the laughter. I suppose we wouldn't be normal if that wasn't the case.

We've just said our goodbyes to Uncle Mitch and Aunt Hilary. We're so grateful for their help around the house, yard, and with the boys. We loved having them here and wish New York wasn't so far away. We had a great time at the baseball game, went to the drive-in movies, ate plenty of ice cream, hit In 'N Out, played Wii, cheered at soccer games, and collasped with exhaustion each night (at least the adults did)!

William has been feeling great. His blood counts continue to remain good enough for surgery. When the social worker asked William on Thursday how he felt about surgery, he answered, "Kinda good and kinda sad. "

SS: "Why is that?"

W: "Good because I'll be getting rid of the tumor. Sad because I'll be losing one of my kidneys and I'll miss it since I've had it all my life!"

We also learned the results of his bone marrow biopsy. One leg is completely clean of cancer cells, but the other has a tiny, tiny amount of cells still hanging out in the marrow. I questioned how that may or may not have affected his stem cell harvest since we obviously don't want infected stem cells transplanted. They explained that cancer cells tend to attach themselves to the marrow and don't mobilize in the blood with the stem cells. I guess I need to do more research about the difference between marrow and stem cells because we've been told they're fairly synonymous. And it's sometimes frustrating when we've asked that question multiple times and this is the first time we've heard this explanation.

We've been putting into place all necessary arrangements for our family while William will be in the hospital. We know that 5-7 days after surgery, assuming his pain is under control, his blood counts remain good, and all appropriate body functions have kicked back in to good working order, his 6th round of chem will begin. Yesterday, we were reminded (yet again) how flexible we must be in this process. We received a call from the surgeon's office to inform us that the surgeon is now on an extended medical leave. Instead, two of his partners will be performing the surgery and will be able to do it during the previously designated time slot, but they want William admitted to the hospital for testing on Tuesday morning instead of Wednesday morning. We had planned to have outpatient lab work on Tuesday and admittance on Wednesday. Now we have an additional 24 hours in the hospital. Ugh.

I've had mixed feelings about getting our surgeon changed because we felt Dr. G was really good, but we obviously don't want him performing surgery if he has medical needs of his own that could affect his ability. I think we've felt adequate peace that the surgery will go as planned, and trust that our oncologists associate with good pediatric surgeons and that Dr. G has very capable partners, but we'll always feel anxiety with any surgery. Who wouldn't? We also have strong faith that God is aware of our prayers, desires, and needs.

6 comments:

  1. Julie, William and your family is in good hands. Sounds like you are working with great doctors and God is definetelly watching over everyone. Just wanted to drop a line to let you know that you are in our prayers and looking foward to the positive results of the surgery. I wish lived close by like we did before so that the boys could hang out at our place to give you a hand. Nevertheles, please know that if you need anything from us, you can count on us. Hugs and lots of love from our family to yours. Cigdem & Serdar Askin Family

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  2. Julie & Ryan - our thots and prayers are with you and especially William and his surgeons. We anticipate a great outcome.

    Love, The Jones

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  3. Grandpa is on his way on Tuesday night- hope that will work out for the new schedule. We continue to pray and are expressing thanks for all that has gone so well so far. Will is amazing, and sounded so good on the phone yesterday!! I love you guys lots.

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  4. Love Williams comment about having the kidney all his life...so cute. Wow this little 8 year old has had to handle so much. Sometimes I think..."this is going to go so well..." William is going to make it through this ordeal and then I think, "Who am I to get that feeling?" I am thinking of all of you and feeling more tired every minute. So many needs, such a finite amount of Mommy and Daddy. I am so grateful for faith and for the Lord and His infinite love and mercy and tenderness. You remain in our prayers each day. We know that Heavenly Father hears our prayers and that the faith of good people - adults and children - can move mountains and heal bodies. Love you dearly....Aunt Linda

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  5. love you dearly too jules. we'll be saying them...

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  6. adequate peace-- i like that concept. i think i need to use that more in my life. :)

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