This afternoon we met with Dr. Simpson, the radiation oncologist at Siteman Cancer Center (Barnes). He said the "tumor board" met last evening and decided the only course of treatment they are going to follow is the simultaneous administration of radiation and chemo (Temodar) for 6 weeks followed by an increased (double) dose of chemo taken for the first 5 days of a 28 day cycle for a year or two. He (they) did not agree to follow Dr. Yung's (MD Anderson) treatment plan of just radiation followed by chemo. According to them the chemo and radiation will work synergistically and be more effective.
The radiation method they would be using is called Intensity Modulated Radiation Therapy (IMRT), which is the most state-of-the-art technology for treating brain tumors. It focuses radiation on the tumor bed and the nearby area (margin) using different concentrations of radiation for different aspects of the treatment field.
Probable short-term side effects of radiation include localized temporary hair loss and fatigue. Possible but rare long-term side effects (as stated on the consent form) include brain damage, developing another brain tumor, deafness, blindness, spinal cord injury, decreased pituitary gland function, scar tissue, permanent hair loss, discoloration of skin, and sun sensitivity.
So basically our choices are:
1. Follow the treatment protocol at Barnes. (Barnes has the only appropriate radiation equipment in the area for this type of treatment)
2. Travel to Houston for treatment at MD Anderson, which would mean Kate would live in Houston for 6-8 weeks straight since she would be receiving treatment Monday-Friday. This option seems undesirable from a family perspective and for Kate's support and well-being.
3. Take a completely different (alternative) treatment approach.
We believe it was a good thing to have our case brought before the tumor board for consideration. Could the tumor board's strong stance mean that the Lord is leading us to follow option #1? We aren't exactly sure but we definitely want everyone reading our blog to be praying that we would have clarity and peace about whatever decision we make. We would like to have a firm decision by the end of the week.
On a positive note, Dr. Simpson gave us another bit of information about Benny (Kate's tumor). He said the MRI completed before surgery, using contrast enhancement, showed it did not enhance. This is a good thing and means the tumor did not show signs of branching out into surrounding brain tissue. This has a positive effect on Kate's prognosis, giving her 10+ years (median survival).
As you can imagine, we are growing tired of doctor visits and competing medical opinions, we just want to make a decision and move forward.
Thank you for your many prayers on our behalf and your notes of encouragement on our blog. It really helps to know there are so many who are coming alongside to bear our burdens.
Kate & Dave
7 comments:
Dear our almighty God!!! God of love, mercy, peace, comfort and greatest decision maker of all.
Come before our dear sister and brother in Christ Kate and Dave, please show them the path you have already paved. What an almighty potter you are, we know you will mold this "hard" clay...... Please God make it obvious to them what your plan is for treatment. Thank you God for the technology and options you have blessed Kate with. Sometimes the choices are overwhelming........help Kate and Dave to trust you and not always the human doctors. Amen
kate and Dave,
Hang in there.........God will make it obvious. Kate, so very nice to talk with you last night. I can't believe you were the one making me laugh and smile. You really touched my heart with your darling spirit. Take Care,
In his Grip!!
April Curtis
Gram's most memorable Christmas:
During the recession of the 1980's my husband was dealing with cancer, radiation along with much fatigue. During one of those years by mid December, Kate's younger brother Calvin, age 8 or 9 was worried that there would be no Christmas tree. It was our tradition that we sawed a cedar every year from the farm. However that year the temperatures dropped to dangerous lows with wind chill factors well below 0. Schools in rural areas were called off due to the bitter cold and children waiting for busses.
One particular cold night with Calvin, Jeannie(Aunt Dee Dee) and I home alone, Calvin set out to rescue Christmas. I was stoking up a fire in the stove for the night when I noticed from the living room window that Calvin was walking up the big hill at dusk. This was dangerous with the wind chill factor so low. I waited for awhile and when he did not return I bundled up to prepare to find him. Before I could artic proof myself Calvin came running into the house all excited. Jean and I went to the garage to see what the commotion was all about. There in the garage was the biggest cedar tree we had ever had. I noticed that beside the tree was an old rusty ax. Calvin was beaming from ear to ear. To this day I will never know how he managed to chop that tree down with that ax.
The problem was the tree was far too big for the ceiling. but there was no way to tell a little boy his tree was too big. I found a hand saw and we began to saw off the excess. I remember sawing at least five feet off the bottom and four off the top. Of course it was so massive in the middle it would not stand on it's own. We had to find binder twine from the barn to secure it to the back wall. Needless to say one little boy was completely happy when we finally managed to get it upright and secure.
Shortly after we were fininshed, Kate and her older brother and sister arrived home. The three teens completely stared at the cedar bush. It did not resemble a bonafide Christmas tree. Knowing teens and how they react, I gave the three a zipper the mouth routine from behind Calvin. I announced that Calvin had chopped the tree all by himself and didn't it look nice. They stood there speechless. The only time in Meyer history. So one by one they praised Calvin for the very large tree that engulfed our living room.
There wasn't much for Christmas that year in gifts, but we set the record for the most unusual tree. That night the siblings all decorated together and little brother slept under his tree in a sleeping bag. I don't believe I ever saw a young boy so content.
Good memories can be found in hardship. And the ugliest of things can actually bring contentment.
"And the angel said unto them, Fear not: for, behold I bring you good tidings of great joy, which shall be to all people." Luke 2:10
Gram remembering the best Christmas
I had walked in the door when Kate was talking to the nurse concerning the doctors' board meeting over her specific case. In my pocket was a bar of chocolate free of sugar and aspartime that I didn't know whether Kate could eat--it had to pass Dave's safety inspection. Kate loves her chocolate, so it was a dissapointment for her to discover that she cannot have any refined sugar, which is what most chocolates have as its first ingrediant.
After Kate got off the phone and wrote the blog entry, she received a phone call with the tragic news that a friend's baby had died. Her friend was delivering twins and the little girl didn't survive the delivering. Kate became teary eyed. She said that her situation is nothing compared to losing a child. I thought to myself that Kate's case was just as bad, that my nephews could potentially lose their mother. I selfishly thought, at least Kate's friend has one surviving child.
Upon driving home, I came to the realization that it was wrong of me to think like this, that it is difficult to lose a child at any stage, just as it would be difficult to lose my sister. Despite her own recent tribulations, Kate still keeps things in perspective by puting the pain of others before her own potential tragedy. It has never occured to me to think of Kate as a selfish person. But now, more so than ever and certainly more so than me, she is proving that she is completely selfless. She is willing to make sacrifices, putting her own wants aside, even if that means to throw her beloved chocolate dunkers in the trash can, so as not to be tempted by the sugar. She is literally throwing her cancer in the trash, so her boys can have their mother.
I'm praying for you!
--A friend of a friend
Kate and Dave,
So glad to know that we have an omniscent God. Praying for His perfect wisdom to be revealed to you in this decision.
LeeAnn Gienke
Dear Kate and Dave--
This is a difficult decision to make. When I have a decision to make, sometimes it helps me to "try on" decisions and see how they fit. What I mean by that is to pretend you have decided that going to MD Anderson for their recommended treatment is the best option. Now that you've decided, how is that going to play out? You're going to be away from home for 6-8 weeks--what kind of support system will you have? How will you keep in touch with your family and supporters? What about the expenses? And as you work through the consequences of your decision, what kind of "peace reading" are you getting from you heart? Is this a decision you feel at peace with?
Now, "try on" the decision to stay home and receive treatment at Barnes-Siteman. Go through the same steps. What is your "peace reading?"
Remember, God can work through any treatment protocol--He's not limited by any of them, so in a sense, either one is a good choice. And it doesn't make sense to me that the God we know would say, "Oops, sorry, Kate, you picked the wrong one, so now you won't get better." Pick the treatment that "fits" you and your family best, and then trust Him to work through it for your good.
Love,
Marilyn
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