Well, I was supposed to post an update last night but I failed to do so because…I fell asleep. So sorry. Our meetings yesterday were once again overwhelming and filled with information that John and I will have to chew on for a while before we make a decision. Noah’s neuro-oncologist was very glad to see him doing so well. She had nothing but great things to say about his appearance, how the incision is healing, his energy level, and his speech, everything of that nature. However, she has chosen a course of treatment that she would like for him to try for at least 6 months and possibly for one year. Due to the aggressiveness of this cancer, there is a huge chance it will come back. She is worried that if we do nothing but wait from MRI to MRI, that he will have another recurrence. The two drugs she has chosen (through research and discussion with her colleagues) are Irinotecan (CPT-11), a different chemotherapy drug, and Avastin (bevacizumab), which is not a chemotherapy drug but a fairly new tumor-starving therapy designed to block the VEGF (Vascular Endothelial Growth Factor) protein that is produced by normal cells and overproduced by cancer cells. Because Avastin is a new therapy, long-term side effects are not known. As I understand, this drug has never been used on anyone with Noah’s diagnosis. John and I are still learning about these two drugs and have not made a decision yet.
I believe I have mentioned before about Li-Fraumeni Syndrome, which some of my family members have and Noah and I were assumed to have based on family history. A blood test confirmed that Noah and I do have the syndrome; my sister tested positive for the defect about 2 months ago. With Li-Fraumeni Syndrome there is a defect on a tumor suppressor gene (p53) that will allow tumor cells to grow uncontrollably, whereas someone without this defect is able to recognize the cell growth pattern and destroy most rapidly growing cells. Because of the defect, a person with Li-Fraumeni Syndrome has a much greater chance of developing a tumor/cancer than a person without the defect. Noah, my sister, and I will need to have preventative scans and tests done for the rest of our lives. Women with LFS are almost guaranteed to develop breast cancer before the age of 60. Some even undergo preventive mastectomies to greatly reduce their risk. There are several different cancers that are associated with LFS: brain, breast, and soft tissue sarcomas to name a few. Children with choroid plexus carcinoma are tested for LFS regardless of family history because of the correlation between the two. Noah has brain cancer because of this defect, and for the rest of his life he will be susceptible to forming other cancers, and that is a lot to think about along with my own susceptibility. We have many lifestyle changes to make as cancer can occur from environmental factors as well. We ask for your prayers as we make positive changes and remain confident in God’s will and promises.
Needless to say, when someone asks “how did it go?” regarding our visits yesterday, it’s hard to answer that question with a simple, “good” or “bad.” We are completely blessed that Noah is doing so well right now, but this battle is far from over. I wish I could write to you that Noah is in “remission” and we are stopping treatment. I wish I could guarantee that he will be free from cancer for the rest of his life – but I can’t. I am writing this only to inform and not to foster sympathy or for you to feel sorry for us…but so you know how to pray. God is so good, and this battle is not only ours but His…and in that we find comfort. The Lord can heal Noah through a number of means, but whether that is in this life or eternity we cannot say for sure. We are not promised tomorrow and we don’t know what a day will bring forth (for ANYONE), so we live each day to the fullest and spend as much time together as we can. Over the past 11 months John and I have become very intentional in how we spend our free time and how we view the time we spend together.
I have more to say, but am going to be late for an appointment if I keep writing. Thank you for your continued prayers and encouragement, and I will post more soon, especially as we make decisions regarding Noah’s treatment.
"But may the God of all grace, who has called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect, establish, strengthen, and settle you. To Him be the glory and the dominion forever and ever. Amen." 1 Peter 5:10-11
These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.