We have made it through Noah’s first new treatment. We arrived at the hospital this morning by 8:45 and were in at the clinic before 9. Noah had a very good attitude in the waiting room. Jessica did a great job explaining what was going to happen today last night to Noah before he went to bed. When it came time for his port to be accessed, he did it like a champ – not even a whimper. We were able to stay in one of the exam rooms for the entire time of the treatment. Noah only received 1 chemo drug and one tumor starving therapy treatment today. Before these drugs they gave him Zofran for nausea and Imodium for diarrhea. So far they have worked. While the machine was pushing the drugs in, Noah was able to play in the floor with a few toys, take a nap and play with the ipad. The only side effect we have seen so far is that he made sounds and gestures that he had a bad taste in his mouth, which is common in chemo, and he wouldn’t eat dinner. Jess bought him an m&m cookie and he wouldn’t even eat it. I hope we can make it through the next few days without him throwing up. That would be great.
His doctor is confident that he will not become neutropenic. He will only have his blood checked once next week, and that is a blessing. His treatments will be every two weeks. We should be on our way home as soon as they are in his system. This new way of treatment is a relief to Jessica and I and especially Noah. We have grown accustomed to being home in the last few weeks. I am glad that isn’t going to change (hopefully).
In four days it will mark the one-year anniversary of when we first heard the horrible news about Noah’s condition. It seems like a lifetime ago and it seems like yesterday all in the same thought. So much has happened in his life in the last year. He has been such a champ through it all. I can still remember the day in 1997 when God put it in my heart that I would have a son and that his name should be Noah. The moment Jessica told me she was pregnant I knew it would be a boy. I know that his life, like all of ours, has purpose. He will be a righteous man in an unrighteous generation – that is why I feel like we were to name him Noah. To some I bet that sounds weird or flakey, but it is my reality. I have questioned so much in the last 12 months. I have given into doubt at times and have been angry at God as well. But through it all there has been so much evidence that God's hand is on his life. I can’t explain it all, and don’t want to try, but I know that Noah’s life is in God’s hands and so far He has decided to keep him here. I hope he decides to keep him here for a long, long time.
Please keep him in your prayers. Please specifically pray that this treatment would finish the battle with cancer and that Noah would suffer no long-term effects for the rest of His life.
We take the blessings we have in this life for granted until we are threatened with the possibility of losing them. Hug your children and kiss them goodnight. Make time to spend with them. Take advantage of the time you have now and don’t wait. You aren’t promised and have no guarantee that your loved one will be here tomorrow. Carpe Diem!
I finally made the dreaded call today to Noah's oncology clinic and we are scheduled for Noah to start his treatment this Wednesday (11/17) at 9am. As I mentioned in the last post, this is a different protocol than the previous one. He will receive the treatment about every 2 weeks for the next six to twelve months. The side effects of these new drugs are somewhat similar to the others, but less severe, so we've been told. Of course there are always potential serious side effects with any drug, but the chances of that happening are very low. Dr. Reddy believes that Noah will no longer need to be admitted for fever/neutropenia as he has before since these drugs shouldn't knock his immune system down so much. The treatment on Wednesday will be in clinic; he should be finished before Wednesday afternoon.
Over the next few days please remember Noah in your prayers as John and I begin to explain that he will start getting his "medicine" again, begin his shots again, etc. Pray that his body will not have any negative reaction to the new drugs, that the side effects will be minimal if at all, and that they will WORK. I'm sure you can imagine my biggest fear...but I'm continuing to push that fear aside and believe that through this last surgery and the new treatment Noah will be healed. I've had several people ask me, REALLY ask me, in the past few days - "how are you Jess?" And to be very honest, I am tired. Before Noah's tumor recurrence I had complete confidence that he would have finished treatment before Christmas and wouldn't need any more. I was praying, "Lord just get me through December." Now I've had to change my prayer to, "just get me through this Wednesday." I'm trying not to think about another year of treatment, but just getting from day to day. So if you want to pray for me also, please pray for strength, and peace, and rest. Not just sleep, but emotional rest and freedom from stress. I haven't done a very good job at managing that lately. I didn't mean to get so personal, just thought I would give a quick Noah update. I will post again after Wednesday's treatment, either Wednesday night or Thursday morning. Thank you for continuing to follow us and to God be the glory!
* John preached this past Sunday at our church; if you would like to watch that message you can do so here. I'm very proud to be his wife and I am thankful for the work God does in his life. :)
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
Just a reminder that tomorrow at 8:30am is our meeting with Noah's oncologist. Please be in prayer that Dr. Reddy, John, and I will make the right decision regarding Noah's treatment. We are also meeting with our genetic counselor tomorrow afternoon. We appreciate your prayers for wisdom and discernment and will update tomorrow with the outcome of our meetings. Thanks!
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.