Nathan Charles Norman's Journal
Unexpected hospital trip
Written Jan 31, 2014 5:50pmNathan woke up this morning with a fever and body aches. He has been having short term memory issues (probably tumor related), nausea and dizziness (tumor or med related), lots more tics, fatigue that seems to be getting worse daily (Dr G said this is from med but Nathan is having to use his wheelchair again because it will just hit him all of a sudden, except today when it never went away). But this morning was different. He came into our room and said he was having trouble with his leg and that his body ached all over. Dr G said to give one dose of Tylenol and see if it subsided but by early afternoon his temp was up to 101.3. We had a chest x ray done that was clear. We saw our dr and they did flu tests which were negative. Then we went to Lynchburg General Hospital peds dept for blood cultures and antibiotics. The nurses and dr were great!!!! They were so nice and followed Dr G's instructions wonderfully. Nathan's temp at the hospital got up to 102.6. We are waiting for his antibiotics now and then they will release us unless anything changes. Dr G wants us to skip his Everolimus for the next two days or until his symptoms subside. Then start back on the medicine and see if this happens again. We pray that it is not the medicine.
I am so thankful that Bobby got off work early today to come get the kids from radiology. He took them home and they all have been cleaning the house and taking care of things there while I've been with Nathan. We have such a great family!
Earlier today we were reading the Bible with the kids and talking about how God has plans for each of our lives (For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. (Jeremiah 29:11 NLT). I asked each child what they thought God's plan may be for them. Tabitha said she thinks God wants her to grow up to be a "cooker" so she can cook good food for people. Matthew thinks God wants him to be a missionary to share the love of Jesus to countries and people that have never heard. Sarah thinks God may want her to be an architect to design homes and building for missionaries and missions use. Nathan said he hopes God heals him here on earth so he can grow up to be a testimony for Him (little does he know that he already is such a great testimony for The Lord).
Pray also for our friends who are battling different medical issues Dylan, Caroline, Allison, Jack, Jackson, Ella, Emaleigh, Nathan T, Ethan, Ezra, Issy, Mia, Micah, Cassidy, Claire, Layla, Charlotte, Arianna, Andrew, Wesley, Kaiden, MacKenzie, Cullen, Ella, Yan, Cayden, MC and so many more. Also, Grandma Lisa, as she is still in the hospital and our adult friends battling: Missy, Jeff, Karla, Lance, Nana and Poppie, etc.
Update on Nathan
Written Jan 28, 2014 8:43pmWe just started off trial Everolimus through Duke last Thursday. Nathan takes it every night. He has good moments and bad. He will be up playing like normal then all of a sudden feel yucky and need to sit down for 20-30 minutes then he will be back up playing. When he feels like playing, we play. When he needs to rest, we rest. Yesterday morning at breakfast we were each praising God for something we were thankful for and Nathan was the first one to say he was thankful for God allowing him to be on a new medicine to fight his cancer. Nathan has been having dizziness, nausea, falling a lot (even off my lap when sitting the other day), and off and on fatigue. We don't know if it is tumor related or the Everolimus. Dr G said for us to keep and eye on it that the MEK trial is opening in a few weeks. We are praying that his body is just trying to adjust to the medicine. Dana Farber is reviewing his case again this week to see what other ideas they may have as well. Also, please pray for my (Dawn's) mom, Lisa, as she is back in the hospital with chronic intestinal problems. We will try to update again later in the week.
Our devotion today was so fitting by Max Lucado. It was speaking about what faith in the Lord is and he said, "[faith is] A conviction that He can and a hope that He will." We know God can heal and we hope and pray he does.
Nathan starting Everolimus Tonight
Written Jan 23, 2014 5:17pmNathan's targeted therapy, Everolimus, arrived today so he will start it tonight. It is an oral medicine he will take at home. He will take the medicine every day for 28 days then go see Dr G for a refill. He will not have any breaks from this medicine but continue to take it daily and go straight from one 28 day cycle to the next. Hopefully he can continue this for a year or two if the cancer does not progress or he doesn't reach the toxicity level of it. He will still go weekly to our local lab to have blood work done because this can cause low white count and platelets. Then monthly when we see Dr G they will check his cholesterol, triglycerides, liver and kidney function. This medicine can elevate all of those levels. It is amazing how God works things out ahead if time though. Just a few weeks ago our family changed our diet (along with most everyone in our Sunday School class) to something called the Daniel Plan which focuses on veggies, fruits, beans, whole grains and lean meats. It removes sugar and preservatives from the food you consume. We have always tried to eat healthy for the most part anyway but the timing of this is impeccable because to help control cholesterol while on this medicine they use diet and medication if needed. So hopefully this will help, God's timing is perfect. We are praying that Nathan does not have any of the above mentioned side effects as well as they said this medicine can cause nausea, headaches, seizures, mouth sores, rash, fatigue, etc. God has preserved his quality of life so far and we pray He continues to. We are so thankful to be starting this medicine tonight and we just ask that you pray that the medicine would be effective in stabilizing the tumors and few side effects.
Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken. -Psalm 62:5-6
Matthew, Sarah and Tabitha are doing great. They were so excited that Nathan would be able to start his medicine and still receive treatment through Duke. They are such wonderful amazing kids!!! Sarah will turn 11 next week so we really want to be able to spend time just celebrating her some this weekend so she knows how special she is. Matthew was so sweet today when he finished his homework he went around the house finding chores he could help me with. Then tonight Tabby and Nathan helped get supper going with me as they "helped" in the kitchen. Bobby and I are so blessed for each day with our sweet babies!
Pray also for our friends Dylan, Caroline, Allison, Jack, Jackson, Ella, Emaleigh, Nathan T, Ethan, Ezra, Issy, Mia, Micah, Cassidy, Claire, Charlotte, Arianna, Andrew, Wesley, Kaiden, Yan, Cayden, MC and so many more.