I had my SRS MRI yesterday at U of M, met with Dr. Hesh (the neurosurgeon), and Dr. Hayman (the radiology oncologist). Upon comparing last Saturday’s MRI to the MRI I had in November, Dr. Heth and Hayman both discovered a new second tumor in my left cerebellum. Go away cancer.
The SRS (Gamma Knife) is scheduled for next week Thursday, March 1. March 1 also happens to be my mom’s birthday. Happy Birthday Mom! 🙂
They will treat both tumors and we will pray that it is again successful.
We’ll be there from morning til night and then I’ll go home. I’ll spare you the details, side effects, and possible risks.
Thank you for thinking, praying and supporting us.
My cancer has been deemed “pokey”. That’s a good thing. While the scans from Saturday show that all the tumors are growing, they are growing slowly or as oncologists call it “slight progression”. They did not find any new cancer. Praise God! What they did find, however, was a slightly enlarged lymph node in my abdominal region, but they’re not concerned about it right now.
Dr. Schott has recommended that I do stereotactic radiosurgery on my brain. This is the as Gamma Knife which I did at Mayo in 2010. She is impressed with how I responded to that surgery and she would like to do it again on the new spot in my brain.
As far as chemo is concerned, she doesn’t see the need to start chemo right now because the spots in my lungs aren’t large enough (thank you pokey cancer). She would prefer to save the chemo options for when I really need it. As you may or may not know, the more chemo drugs a person is exposed to, the more immune the cancer cells become to the drugs, thereby becoming less effective. I hope I’m explaining that right to all you medical people out there.
I’m going back to U of M Monday for a very specific MRI, to meet the neurosurgeon, and to meet the radiation oncologist.
I believe the next step will be the procedure. Just thinking about the procedure puts a great amount of fear in me. Call me a wuss, but having screws turned into your skull while awake isn’t fun. 🙁
We are back from an amazing trip to Florida. As you know, this trip was possible because of Inheritance of Hope (IOH). They’re a non profit organization founded by Kristen and Deric Milligan. Kristen is terminally ill. www.inheritanceofhope.org
To be honest, we went into this trip a little skeptical and not knowing what to expect. We knew they had a tight schedule for our family of five, but we were going to try our best to work with it. We were excited to go to Disney World and see all the characters and ride the rides, but this trip turned out to be so much more.
We were there with 12 other families (four pulled out at the last minute) from all over the country. One of the parents from each family suffered from a terminal illness. IOH is so warm, caring and incredibly detailed we could tell from the moment the volunteers picked us up at the airport hotel that this was going to be a great trip.
When we walked into our hotel room we had a bag of goodies from IOH and T-Shirts. Then we noticed a BIG pile of mail. We were so surprised and touched by the letters and cards you sent us. Thank you Jill and Papa Dale for contacting so many people to do that. We had over 60 cards and letters.
The first night we had a welcoming dinner where all the families ate in a banquet room. Dinner was delicious. At the end of dinner they had announcements and then said there was one more guest that was coming. In walked Mickey Mouse! The kids were so excited. They were calling the families up to meet him in alphabetical order. Being the Dutchies that we are, we were last. Max ran up to Mickey and gave him a HUGE hug. We had many pictures taken with Mickey. We couldn’t believe it.
The next morning the kids went to playgroup and the parents went to parent groups where we met everyone. When we met up with the kids again, Brooklyn said to me “Mom! I met some kids who have sick parents too.” That was her “ah ha” moment. Then we ate lunch, matched up with the best volunteers in the world and went to the Magic Kingdom.
We had two volunteers for the weekend. They were Angie from Atlanta, GA and Mike (Golden Boy) from Mississippi who lives in NYC. Let me say all the volunteers and staff for IOH have the light of Jesus shining in them. They are amazing. Angie and Mike pushed me in a wheelchair, carried water in their backpacks, took pictures, got us a medical pass so we could walk up to any ride or character and be next in line, helped with the kids anytime and anywhere. We were incredibly blessed on this trip. The kids even got to be part of the Lion King show!
The day we left we had closing ceremonies and on the agenda, there was my verse – Jeremiah 25:11. Kristen and Deric were there and had explained how they are usually on all the retreats, but couldn’t make it to this entire retreat. After a very moving message from Kristen, she said when they get home it was time for her to contact Hospice. There wasn’t a dry eye in the room.
When we left, Brooklyn was full of tears because she was going to miss Angie and Michael so much. She has already emailed Angie and wrote Mike a letter. She also declared she’s going someday as a volunteer.
This trip was way more than Disney. I learned so much and will be forever blessed by the IOH volunteers and staff. Thank you to everyone for your prayers, cards, letters and love.
On Saturday I’m going to U of M for an MRI of my brain and CT scans of my chest (lungs) and pelvis. Please pray that they go well for me. I tend to get sick after the CT scan.
Next Tuesday (Valentine’s Day) we go back to U of M for the results and decide what chemo to try next.
Thank you for the kindness and love you’ve shown our family. If you run in marathons and want to run for a non profit, join the IOH marathon team.
Notice:
My hosting company 1&1 recently upgraded the back-end engine that powers this blog. In doing so, they deleted all the existing images on the site. They are not assisting me with replacing the images they deleted, so I will be adding the images back as time allows.
Thank you for your understanding.
