Nathan Charles Norman's Journal
Written Aug 5, 2013 8:25pm
Nathan had his MRI today. It was the first time he ever did one without ANY sedation and alsowithout his port. So first we went upstairs to oncology where they put the IV in for the contrast. Nathan did not fuss for a second!!! He was so brave. Then we went to MRI where he did it without being put to sleep. It was 2 hours long since it was total brain and spine and he totally rocked it!!!!! We were so proud of him. Since Nathan’s appointment and Tabitha’s appointment were at the same times, I took Nathan back and Bobby went with Tabitha for the ultrasound. My mom (Lisa) and Jessica took care of Sarah and Matthew out in the lobby. They all did so wonderful!!! Sarah and Matthew are such amazingchildren. They are so responsible and compassionate. Bobby said that Tabitha did great during her ultrasound but she cried some with the ultrasound just because she is not use to all these medical procedures. We still do not have any answers on her but hope to over the next day or two. We are thankful for my mom and Jessica going with us to help out.
We saw Dr. G today with Nathan. We were so sad that Dr. Grant has now left for California and then we found out today that his Nurse Practitioner, Melody is going to UNC. Not to mention some of our favorite nurses in Radiology are changing shifts so we will not have them anymore. We told Dr. G that he is not allowed to leave. Thankfully he is not planning to go anywhere. Dr. G said that as of the preliminary scans on Nathan, the brain and spinal tumors looked stable which we are so thankful to the Lord for. Once again, stable means that the cancer is there just not actively growing at this moment. So the plan is since we have been on chemo for a year now to take it month by month with how well Nathan is handling the chemo side effects. We are hoping he can continue until the end of the year or first of next year. He will still be on the same three chemotherapy drugs he has been on – Revlimid (21 days on and 7 days off) and then Temodarand Etoposide (5 days on and 3 weeks off). Once again Dr. G said that once chemo stops, if and when the tumors begin to progress (or grow) again he will send us to Pittsburgh to see if Nathan has the correct tissue type to qualify for the clinical trial of an immunotherapy they have.
As far as Tabitha goes, we hopefully will know more over the next few days regarding the ultrasound on her kidneys. This still doesn’t explain the fevers so we see the rheumatologist for her later this month on that issue. Nathan will also go back to Duke later this month to see the pediatric ophthalmologist and then in October to see hispediatric pulmonologist. His next MRI will be in 3 months but he will continue his chemo in the mean time.
We are so thankful for everyone’s continued prayers and support. So often it can feel like overtime people tend to forget that Nathan is still sick and the cancer is still there and he is still battling every day of his life. 26 out of every 60 days he is on chemo thattakes its toll on his little body. He is having some minor skin reactions to the Revlimid, fatigue when on the Revlimid, some neuropathy from past chemo meds that will never go away, dizziness, nausea, trouble with his speech and words at times, and occasional seizures every couple of months. In saying that, Nathan still does 100 times better than he could be. The Lord’s hand is definitely on him and he is so full of life, joy and faith. Please don’t forget however that he is still battling daily and pray for him and all the other many children who are such brave warriors.
Romans 8:35-39 reminds us, “Can anything ever separate usfrom Christ’s love? Does it mean he no longer loves us if we have trouble or calamity, or are persecuted, or hungry, or destitute, or in danger, orthreatened with death? (As the Scriptures say, “For your sake we are killed every day; we are being slaughtered like sheep.” ) No, despite all these things, overwhelming victory is ours through Christ, who loved us. And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.”
Please pray for other children that are struggling withcancer right now: Hannah I, Dylan F, Mary Catherine B, Ethan, Ella,Charlotte, Stella, Maci, Sarah N, Emaleigh, Ezra, Jackson, Cassidy,Kate, Hannah, Campbell, Momo, Issy, Marcello, Nathan T, Bayleigh, Tyler,Wesley, Edie, Noah, Tate, Jessi S, Abby C, Vincent, Barcus family, and many more. Please also pray for other children who are struggling with other health issues: MacKenzie, Harwoods, Jackson, Aaron, Holden, Corrine,Keira, Cayden, etc. Please also pray for Missy, battling Melanoma. Please also continue to lift up the Sims family in your prayers.
Our non-profit, Hope for Tomorrow (www.hope4tomorrow.org) has a few things planned for September, which is Pediatric Cancer Awareness Month. We are still delivering toys to various hospitals. Hope for Tomorrow is going to CureFest 2013 - this September 1, 2013 in Washington, DC from 2 p.m. to 6 p.m. to help raise awareness for pediatric cancer. Our 1st Annual 5k will beSaturday, September 7, 2013 at 9 am at Peaks View Park in Lynchburg, Va. Registration is $25 and can be done online at www.hope4tomorrow.org. All funds raised will go to cancer research and to support pediatric cancer families in need. For more information and to see many of our different Heroes of Hope who are also battling go to www.hope4tomorrow.org.
MRI Monday, August 5th
Written Jul 30, 2013 8:49pm
Sorry it has been a few weeks since we updated. Nathan has been on his three week break from chemo. He was suppose to start back thisweek but our oncologist wants to wait until his MRI this upcoming Monday,August 5 before we start our next round of Revlimid. Overall Nathan has been doing well. Since he has been on his 3 week break he has had much more energy, good labs, and not nauseated daily. However he has been having many more facial tics, dizziness, and some back pain. Today he was complaining of tingling and pain in his hand so we are wondering if he may have some neuropathy starting like we did before on some other chemo meds he was on. We are going to talk with Dr. G next week about this. But overall he has been feeling pretty good. We were figuring out the other day, Nathan has battled brain and spinal cord cancer since Jan 2009 and is still fighting strong after 6 surgeries, 55 chemo infusions, 165 chemo pills (and counting),200+ labs, 26 port flushes, 25 two hour long total brain and spine MRI's and counting and six different types of chemo. What a warrior!!! He is God’s little warrior because he goes through all this with such love, joy, and faith!
Tabitha went for testing a few weeks ago and ended up seeing infectious disease doctors and oncologists who both ran a battery oftests. The only things that came backwere high Phosphorus levels and enlarged kidneys which they say has nothing to do with the almost daily fevers. So Monday when Nathan has his MRI, Tabitha will be having a kidney ultrasound to determine why her kidneys are enlarged. They do not believe this has anything to do with her fevers so they have referred her to rheumatology, which we will see at the end of the month. They are believing the fevers are either related to joint inflammation of some sort of auto immune disorder so they are continuing to test until we find answers.
Sarah, Matthew, Nathan, and Tabitha started back homeschooling this week. Sarah is in 6th grade, Matthew is in 4th grade, Nathan is in 2nd, and Tabitha is in Pre-K. They have been so excited to get back to the regular school routine. They love learning and I feel so blessed to be able to be here and teach them. Bobby is so supportive in our homeschooling. Sarah is just amazing me daily as she grows into the amazing young lady that is nurturing, leading, and responsible. Matthew keeps asking me if his birthday wish, for Nathan’s cancer to go away, will ever come true. He is so compassionate. We are so blessed with our four precious babies!
Our non-profit, Hope for Tomorrow (www.hope4tomorrow.org) has a few things planned for September, which is Pediatric Cancer Awareness Month. Christmas in July is going great!!!! With the help of many friendswe have been able to deliver over 100 boxes of toys to 5 hospitals so far. There are 3 more planned deliveries for the first of August. We have more toys available so if anyone has a hospital that they would like to pick up toys to deliver to please let us know at email@example.com.
Hope for Tomorrow is going to CureFest 2013 - Help KickOff Childhood Cancer Awareness Month with CureFest, this September 1, 2013 in Washington, DC from 2 p.m. to 6 p.m. This event is by and for the entire childhood cancer community and is a great opportunity for us to speak with OneVoice. CureFest is kid-friendly and will feature games, activities, face painting, moon bounces and more. It is being sponsored by The Truth 365,Arms Open Wide and Journey 4 A Cure. If you would like more info go totheir Facebook Page at www.facebook.com/theTruth365film
The Hope for Tomorrow 1st Annual 5k will beSaturday, September 7, 2013 at 9 am at Peaks View Park in Lynchburg, Va. Registration is $25. All funds raised will go to cancer research and to support pediatric cancer families in need. September is Pediatric Cancer Awareness Month, please help us as we raise awareness and funds to help battlethis dreadful disease! To register for the 5k please go to www.hope4tomorrow.org and click on the 5k link. For those who do not run but want to walk the 5k,we will allow walkers who will just be at the end of the line. Riverside Runners is helping to support this event along with many other businesses and individuals. Starbucks and Panera Bread have already told us they would donate the food and drinks for the race. Check out our website if you are interested in any of these events or to learn more about us. All of the funds raised will be going to pediatric cancer research and to help other families who are fighting.
Please pray for other children that are struggling with cancer right now: Hannah I, Dylan F, Mary Catherine B, Ethan, Ella,Charlotte, Stella, Maci, Sarah N, Emaleigh, Ezra, Jackson, Cassidy,Kate, Hannah, Campbell, Momo, Issy, Marcello, Nathan T, Bayleigh, Tyler,Wesley, Edie, Noah, Tate, Jessi S, Abby C, Barcus family, and many more. Please also pray for other children who are struggling with otherhealth issues: MacKenzie, Harwoods, Jackson, Aaron, Holden, Corrine, Keira,Cayden, etc. Please also pray for Missy, battling Melanoma. Please alsocontinue to lift up the Sims family in your prayers. Please pray for ourneighbor, Linda’s mother, Nancy as she is in hospice care. There is so much sickness and so much hurt that only the Lord can bring His peace to.
In the children’s devotion, Jesus Calling for Kids one of the recent devotions spoke as if it were Jesus talking to you:
“’Be joyful because you have hope. Be patient when trouble comes. Pray at all times.’ - Romans 12:12. Be full of Joy because you have hope – the hope of heaven. You and I (Jesus) are on a journeyTogether. I never leave your side and I never let go of your hand. When the road gets rough, it is hope that helps you look up toward heaven instead of down at your aching feet. When it seems that you are all alone, it is hope that reminds you I am still with you. When you just can’t take another step, it is hope that helps you trust Me to carry you. And when all you can see around you are huge problems, it is hope that gives you the courage to keep going. When you remember that the road we’re traveling on is really a highway to heaven, the roughness or smoothness of the road becomes less important to you. I am training you to keep your focus on My Presence with you and the hope of heaven.”
I don’t know about you, but that is where we find our hope and our joy. We are followers of Jesus Christ and so no matter what happens here on earth we know our eternity in heaven is secure. So even when we grieve and are anxious about tests and results and what next, we can press forward with an everlasting hope that will not fail or falter. Thank you all for your continued prayers for our family. It is hard when you have an ongoing issue. Nathan has been battling cancer for 4 1/2 years and your prayers and support mean so much!
Written Jul 12, 2013 5:36pmUpdate on everyone: Matthew turned 8 years old on July 2nd. He is such a funny, sweet, smart little man. When Matthew blew out his candles we asked him what he wished for and he said for Nathan's cancer to go away. We have four AMAZING kiddos! Sarah has really enjoyed the summer. Sarah, Matthew, and Nathan just finished going to 3 days at horse camp, which the really enjoy. I was so proud of Sarah because while they were at camp during the day she really took care of her brothers and was able to lead a session on tying slip knots. Nathan thinks of her as a little mommy when I am not with him. Sarah has to be the most mature and responsible 10 year old ever! Tabitha has had fun the last few days while the others went to camp during the day. She has had special time with grandma, me and daddy. We will take Tabitha on Monday, July 15 to Duke to see a specialist about her ongoing health issues. Please pray they can determine what is going on with her. We are not very worried about it being anything really bad because the doctors in town have ruled out so much but we would just like an answer so we are hoping Duke can give us that.
Nathan finished his Revlimid the first part of July and is suppose to start his next round of chemo (Temodar and Etoposide) tonight for 5 days. He has been having some issues with headaches and dizziness. Our oncologist, Dr. G, said he may give Nathan a patch that is suppose to help with dizziness. His next MRI is August 5th so we are praying for stability. He has still had a good amount of energy, a little fatigued here and there but the Lord definitely has his hand on him.
Our non-profit, Hope for Tomorrow (www.hope4tomorrow.org) has a few things planned for September, which is Pediatric Cancer Awareness Month. We have started delivering Christmas in July toys and treasure box items to hospitals this week. If you know of any hospitals that would like to have toys to give out to help bring a smile to a child let us know at firstname.lastname@example.org. We have a 5k planned on September 7th here in Lynchburg, Va and we will also be doing a bone marrow registry drive the same day. Check out our website if you are interested in any of these events or to learn more about us. All of the funds raised will be going to pediatric cancer research and to help other families who are fighting.
Please pray for other children that are struggling with cancer right now: Hannah I, Dylan F, Mary Catherine B, Ethan, Ella, Charlotte, Stella, Maci, Sarah N, Emaleigh, Ezra, Jackson, Cassidy, Kate, Hannah, Campbell, Momo, Issy, Marcello, Nathan T, Bayleigh, Tyler, Wesley, Edie, Noah, Tate, Jessi S, Abby C, Barcus family, and many more. Please also pray for other children who are struggling with other health issues: MacKenzie, Harwoods, Jackson, Aaron, Holden, Corrine, Keira, Cayden, etc. Please also pray for Missy, battling Melanoma. Please also continue to lift up the Sims family in your prayers. Please pray specifically for Laura Harwood this week as she has been struggling with many health issues.
"Let us hold unswervingly to the hope we profess, for He who promised is faithful." - Hebrews 10:23
"Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will now grow weary and lose heart." - Hebrews 12:2-3
"But we are not of those who shrink back and are destroyed, but of those who believe and are saved." - Hebrews 10:39