February 25th Well, I finally got around to updating Nicole's page. Well. Actually Nicole keeps asking me why I haven't updated it. I guess no news is good news. Nicole is doing GREAT. Thanks to God and all of your prayers. Of course the doctors had something to do with it too. We are grateful that Nicole is doing as good as she is. She is making progress with catching up at school and she is happy.
March 21st Nicole had her MRI today.
April 2nd Dr Goldman called. He reviewed Nicole's MRI of the brain which shows Stable. Thank God. There is a portion of the spine which is enlarged. They will keep an eye on it but are not too worried about it.
June 5th Nicole saw Dr Erickson today. She is set for Oral surgery on June 28th to remove multiple "extra teeth" from her lower mouth.
June 6th Nicole had a kidney ultrasound, blood works and an appointment with Dr. Cohn today. She is back on her blood pressure meds. But looks good.
June 7th Nicole met her friend Dr Anthony Pollastrini at his office in Saint Charles. He is really nice and we all enjoyed the visit especially Nicole. We took a couple of pictures which, we will post.
June 13th Nicole had her MRI today. The tumor on her brainstem is growing again. Since it is growing slowly and she is not showing any problems, we have time to decide an appropriate plan. Her case will be discussed at the brain tumor board on Thursday 6/21/07. We will update as soon as we know more
June 21st As we expected the best plan is to watch the tumor growth and wait as long as we can before starting chemo again.
June 28th Due to scheduling conflicts, Nicole's oral surgery was postponed.
July 7th Nicole had a blast at One Step at a time Camp She spent two weeks there and As usual, had the time of her life.
August 22nd Nicole is back in school. It is a little different since some of her friends are now attending the new middle school. But she still has plenty of friends.
August 30th Nicole had her oral surgery at Children's Memorial. Dr. Erickson was able to remove 19 teeth, which included 6 wisdom teeth. (Believe it or not she still has a full set of teeth) She did good. Although I could see it was a lot more than she expected. Since the last one was a lot easier. Nicole is a trooper and did not complain much at all. (Dad had plenty of icy snacks for her) This was her second oral surgery to remove extra teeth, during the first surgery they removed 9 teeth.
September 11th Nicole had her post surgical visit to Dr. Erickson in Carol Stream, which was nice because we didn't have to drive so far. Dr Erickson said she was healing up very well. Nicole had her picture taken with Dr. Erickson and his staff. THANK YOU Dr Erickson!!!!!
November 7th Nicole had her MRI today. We were not surprised when we found out that the tumor on Nicole’s brainstem had grown substantially. Nicole saw her Neurosurgeon Dr. Tomita, her Neurologist Dr Keating and her Oncologist Dr Goldman after her scan. Dr Keating did a complete neurological exam and advised that the tumor is now causing some symptoms. All were in agreement that it was time to take action. Dr. Goldman ordered some additional blood tests to prepare for treatment. Melodie and I asked Nicole if she knew what we were talking about and what she thought. She replied, “My tumors are growing again. I want to get better, so LETS DO IT!”
November 8th The Brain tumor board met at Children’s Memorial and discussed Nicole’s case. It was decided that she should start treatment now. Dr Goldman told us about a Phase 2 clinical trial “CC-5013” (Lenalidomide). Lenalidomide is similar to Thalidomide and the drug Nicole took to treat the brainstem tumor last time. The other option is Carboplatin and Vincristine, which are the chemotherapy combination Nicole had for the tumor on her Hypothalamus gland. Both drugs have their risks and benefits. Melodie and I are praying for Divine guidance in choosing the right path. We are grateful to have the team at Children’s Memorial in Chicago by our side. They have really been there for us and helped us through some very scary times. We are equally grateful to the many neighbors, friends and family, who have helped us in many ways. Spiritually, financially and emotionally.
November 20th We discussed our feelings about the potential risks associated with the trial (Heart failure & blood clots) with Dr Goldman. We told him we were not comfortable putting her on that trial and chose the traditional chemotherapy route, which was Carboplatin and Vincristine, even though she had nerve damage from the Vincristine (we felt this was the lesser of two evils). Dr Goldman said he would look into a study of the efficacy of the combination of Carboplatin and Vinblastine. She has had both and tolerated them well. This would keep her from having to take Vincristine, which is very hard on the peripheral nerves. In any case, Dr. Goldman told us he felt we could wait to start until after Christmas. He said he wanted her to enjoy her Christmas. God bless you Dr Goldman.
November 23rd
We had Thanksgiving dinner at Melodies parents house, the kids
had a blast, grandpa had a fight simulation program which he used to keep the
twins busy, Nicole spend Mommy and Grandma time, which she enjoyed and I went
back and forth between them all. I am happy when they are happy. Oh BTW, the
meal was excellent. We have a lot to be thankful for: We have Nicole, who
is happy, not in pain and free of noticeable symptoms. Thank You God.
As always Please keep Nicole in your prayers
They really DO work!
Upcoming events:
November 28th Mom & Dad's 15th wedding anniversary