Thursday April 21, 2011

OK, my turn to take a stab at writing these words. It's not as easy for me to put myself out there emotionally as it is for Dan, but as we keep saying, in our "new normal" so many things are different. So here I am writing a blog for all to see ...

Today was the day that treatment began. First up, blood draw where the results showed, as Shannon said, "I am really completely healthy except for this tumor". Yep. Next appointment was back in hematology oncology with Dr. Khan for a consult and to receive the prescriptions for anti-nausea meds and the chemotherapy drug Temador. Shannon had lost 5 pounds since Friday, so even though she has been attempting to eat healthy to keep her strength up, Dr. Khan said throw in some high calorie foods. Finally, an area I know something about. Shannon can't wait until Sunday - she gave up ice cream for lent, so once it's Easter, packing in the calories gets a whole lot easier!

We also met with a social worker for the first time and Shannon shared some thoughts but also spent plenty of time looking at Mom and Dad to see how we were reacting and protecting us a little, no doubt. We will meet with her weekly and separately which hopefully will give Shannon an outlet. Up to this point, Shannon has had such grace and composure through this all. I want to scream and swear and complain and she keeps it together almost all the time. As my dear friend tells me, our kids are always showing us how to live ...

The next appointment was a first time meeting with the surgeon, Dr. Wetjen. Despite my joke about surgeons (sorry to any of you out there reading this) Dr. Wetjen was actually very nice! But, his news was sobering, even if we had heard it before. No need to biopsy, we know what it is and it's a bad tumor in a bad place. If there was a clinical trial somewhere that gave us a better chance, he would send us, but there isn't. For the first time the thought of coming up with a Make a Wish idea was addressed. I ... can't ... go ... there ... yet.

Lunch time was spent haggling with the insurance companies to get prescriptions approved so that treatment could start today. Taking the chemotherapy pill is suppose to coincide with the radiation. I'll spare you the nuts and bolts of it, but tracking down doctors to re-write prescriptions was no easy task. In the end, the Mayo Pharmacy made it happen, hallelujah! At 3:30, Shannon was off to her first radiation treatment. One of the hockey moms who works in the radiation oncology department was there to walk Shannon through it and put her at ease. I am so grateful for people's kindness. This is a woman whose daughter has never been on Shannon's team and I knew of her daughter, but had never met the woman before Tuesday. Now, here she is answering any questions we have and being with Shannon as if she were her own child. Unbelievable.

By the time we got home, Grandma had handled getting Erin on and off the school bus, made an after school snack, and helped with homework. (Except for that pesky 5th grade math that was a little beyond Grandma) Each of the next 5 Thursdays will look something like today with weekly check ins with each team of doctors, the social worker, blood work and still the daily radiation.

Tonight Shannon was absolutely exhausted, but she did share this funny story. When they made her radiation mask on Tuesday, she was smiling. So now, in order to make the mask fit effectively, she needs to smile through 42 radiation treatments!

We enjoyed a great drop-off dinner by some hockey friends, the Pankows, and we are trying to get our arms around accepting this kind of help. Our friend Ellen Wente is managing this for us. The "new normal" includes letting other people decide what's for dinner.

Now that we have this blog up and running and are ready to share, it's going to be kind of boring for the next few days, we hope. Dan and I both need to find a way to work a little and sleep a little, Shannon will go to school for four hours a day, head to radiation, and then if she's feeling up to it, off to golf practice. Erin is gearing up for the Fireballs first soccer game on Saturday.

The world spins madly on ...