Nathan Charles Norman's Journal
Camp Sunshine & Chemo:)
Written Oct 17, 2013 5:44pmA couple updates: Nathan is still plugging on with his various chemos (Revlimid, Temodar and Etoposide). We still have a few months left for these chemotherapies before he has to stop. He just started back on 21 days of Revlimid on Tuesday, Oct 15. We will go next month for an MRI on Nov 4th and to see his neuro-oncologist, Dr. G. He will also meet another neurosurgeon at Duke and see his neuro-ophthamologist to check that spot in his eye. Since we are coming to an end of chemo we are talking with several other hospitals about what options they may have for Nathan. Some of the hospitals have contacted us back and do not have any other options but we have a few that sound very promising. We had a call today from Cincinatti Children's about a clinical trial for an oral chemotherapy that they believe Nathan would qualify for. Our neurosurgeon, Dr Grant, moved in July to Stanford in California and he is checking with is tumor board to see if Nathan would be a candidate for cyberknife radiation to the two tumor sites. Dana Farber is just waiting for one more piece of medical info from Duke that they mailed out yesterday so hopefully they will be able to meet over the next week or two with their tumor board to see what Nathan may qualify for (i.e. proton beam therapy or any clinical trials). St Jude did not really have any other options and MD Anderson, CHOP, and Sloan Kettering are still evaluating. Please pray for us to have discernment as to what our next option should be. I just have to say that Sarah, Matthew, and Tabitha are such wonderful siblings and such a great support to Nathan in his fight. Bobby and I area so proud to be their parents.
We had the opportunity to go to Camp Sunshine this last week during a brain tumor session. They entire trip was amazing. Camp Sunshine flew us into the Boston, Massachusetts Airport where we were greeted by some of the wonderful police officer friends we had met last December. We were then escorted into Lexington, Mass. to spend the day with more of our Mass. police friends and learn about the history of the area (we are all history buffs:)) and ended the night with a wonderful meal with many of the families. We then spent a great week with many other families who were also battling some form of brain/spinal cord cancer. It was very informative to be with other families. We met some great families and our children developed several friendships with other kids who were either battling cancer or siblings of a child who is/has battled. When we went to fly home on Tuesday we were once again greeted at the airport by more officers that we had the honor of meeting last year and some wonderful TSA agents. Last year we met so many people and it has been wonderful the ones who have continued to be part of our family's life. We are so blessed to have such wonderful friends!!!
Please continue to pray for all the children who battle with cancer or side effects from cancer every day: Nathan T., Cassidy, Carter, Mary Catherine, Ezra, Claire, Ella, Tyler, Ethan, Ella, Emaleigh, Vincent, Stella, Jaxson, Adrianna, Aidan, Sarah, Wesley, Charlotte, Jack, and sooooo many more.
Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
Update on Nathan:)
Written Oct 1, 2013 8:48pmHope everyone is doing well! We want to thank you all for all your continued prayers for our family. Sarah, Matthew, and Tabitha have been doing good. Nathan is still on his 3 week chemo break, so he is feeling pretty good.
We have been busy checking with other hospitals to see if they have any ideas of when treatment ends if the cancer begins to progress what the next step should be. We still pray that God keeps it stable FOREVER, but we also know that every time Nathan ends chemo within 4-6 months the cancer begins to grow again so we want to have a plan in place because once it starts it progresses quickly.
St. Jude said they would not have any options for Nathan based on all the therapies he has already been on. Cincinatti Children's, Dana Farber, MD Anderson, Sloan Kettering, and CHOP are all reviewing his file to see if they have any thoughts. We absolutely LOVE Duke but we just want to make sure that there is not something we are missing that Duke does not offer. Also, we have many reservations about the clinical trial in Pittsburgh. We just want to explore what options we may have. Cincinatti had one possible option but it looks like Nathan's tumor is too high of a grade to be part of that study but the neuro oncologist I spoke with was so nice and she is planning to review Nathan's file and speak with Dr G to brainstorm and see what ideas they have.
I know it may seem silly to some of you that we are checking into this now while he is stable and still on chemo treatments but we know when treatment ends that unless the Lord stops the growth of the tumors they will progress again and so we need to have a plan in place. Better to have a plan and not have to use it than not have a plan and run out of options and time.
Even though pediatric cancer awareness month is over we are still wanting people to be aware of how many children each day are diagnosed and how little funding goes for pediatric cancer research. To learn more and how you can help go to www.hope4tomorrow.org . Our organization has the awesome opportunity of sending half of our funding to research, this time we chose CureSearch to send our funding to and the other half to help families who are in need while battling pediatric cancer. Nathan's journey and his fight will not be in vain. If we can help other families who are battling, if we can be a small part of helping to find a cure...
Please pray for so many other children who are battling cancer or other medical issues right now. Especially pray for Wesley, Carter, Mary Catherine, Nathan T., Campbell, Ezra, Cassidy, Ethan, Stella, Ella, Emaleigh, Vincent, Dylan, Cayden, Cullen, and so many moreIn Live Loved by Max Lucado my devotion the other day just really spoke to my heart:The brevity of life grants power to abide, not an excuse to bail. Fleeting days don’t justify fleeing problems. Fleeting days strengthen us to endure problems. Will your problems pass? No guarantee they will. Will your pain cease? Perhaps. Perhaps not. But heaven gives this promise: “Our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory” (2 Corinthians 4:17).The words “weight of glory” conjure up images of the ancient pan scale. Remember the blindfolded lady of justice? She holds a pan scale—two pans, one on either side of the needle. The weight of a purchase would be determined by placing weights on one side and the purchase on the other.God does the same with your struggles. On one side he stacks all your burdens. Famines. Firings. Parents who forgot you. Bosses who ignored you. Bad breaks, bad health, bad days. Stack them up, and watch one side of the pan scale plummet.Now witness God’s response. Does he remove them? Eliminate the burdens? No, rather than take them, he offsets them. He places an eternal weight of glory on the other side. Endless joy. Measureless peace. An eternity of him.Heavenly Father, you have promised us an eternity of endless joy with you. Knowing this encourages us to stand firm during the difficult times of life. We know that you are balancing our suffering with an eternal weight of glory. May our response to testing in this life bring glory to your name now and through all eternity. Give us the strength and courage to endure faithfully our struggles through your grace and mercy, amen.Yet I will rejoice in the Lord, I will joy in the God of my salvation.Habakkuk 3:18My soul shall be joyful in the Lord; it shall rejoice in His salvation.Psalm 35:9I will greatly rejoice in the Lord, my soul shall be joyful in my God; for He has clothed me with the garments of salvation, He has covered me with the robe of righteousness.Isaiah 61:10
Three week chemo break:)
Written Sep 19, 2013 8:56pmSince last update our family had the opportunity to stay in a villa that some friends own at Hilton Head. It was a great time of much needed relaxation and just some quiet family time together. We enjoyed time with family and friends a couple days while we were there. Then the rest of the time we spent biking, walking or at the beach. It was a nice break for us all. Sarah, Matthew, Nathan and Tabitha enjoyed just having family time each day!
During this week Nathan finished his Temodar and Etoposide for this month so he is now on a three week break. Bobby and I have had a lot of time to talk this week and we have made some decisions regarding Nathan's cancer treatment. First of all, we absolutely LOVE Duke and our drs there. However, with Nathan coming to the end of this course of chemo we both feel like we need to see if there may be another hospital that would have some other ideas. What if there is something out there that will not just stabilize the cancer but actually get rid of it, what if we are missing something. So after much research each night during our vacation we have decided to check with Dana Farber in Boston, MD Anderson in Houston, and CHOP in Philadelphia just to see if they have any other ideas. Nathan has now been fighting brain and spinal cord cancer for 5 years come this upcoming January and he is fighting just as strong today as he was then and we will keep fighting for him. Please pray for our family as we seek discernment from these other hospitals and allow God to show us what He wants us to do.
Please also pray for all of the children and families we list each journal entries. Also add to that list Carter, 5 year old from our area just diagnosed with lymphoma. Also, pray for my mom, Lisa, who has been in the hospital this week.
Thank you all for your prayers and support.
I hold onto these verses:
Romans 8:37-39 "37 No, in all these things we are more than conquerors through him who loved us. 38 For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, 39 nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord."