I am so sorry I have not written in so long. I am so sorry if I have worried anyone. We have been busy trying to pick up the pieces to build our new life and trying to enjoy every moment we have together. I have been updating Facebook fairly regularly with quick Nate updates. If you're on Facebook, please "like" his page at www.facebook.com/supernatedinoffria. If you're not on Facebook, no worries, I promise to try and be more consistent with the updates on here. It is very important to me to continue to share Nate's story. To continue to spread awareness of childhood cancer, childhood cancer treatment and the effects it leaves behind. I also want to share the joys and triumphs in Nate's life for those of you who have come to know and love him and especially for the parents of newly diagnosed children. When your child is diagnosed with neuroblastoma, it is virtually impossible to find success stories on the internet. Partly because there are so few, but mostly because parents stop writing when their child is doing well. They are too busy living life, which is awesome, but I want Nate's story to be a beacon of hope to those in the dark days of diagnosis and treatment...until there's a cure.
Nate has been so busy having fun, fun, fun and LIVING life! We were able to delay our annual family San Diego vacation until August and get Nate to the beach...as he had been asking for all year. He loved spending time with his family, digging in the sand, visiting Sea World, and riding bikes and roller coasters.
We came home from our trip to a very special delivery of some very special shoes from Peach's Neet Feet, a spectacular organization started by a remarkable young woman, which hand paints special shoes for children with life threatening illnesses and other conditions. Nate's special shoes have a Super Nate symbol, a rocket, a gold ribbon for childhood cancer and a picture of Softie. He LOVES them and has worn them almost every single day since receiving them.
We got word at the end of August that Nate could have his central line removed, since he was finished with all of his intense IV therapies. It has been such a blessing to not have lines to worry about anymore. No more dressing changes and central line care, no more worries about central line infections, and best of all...swimming and baths!
Nate swam almost every day, from the day after his line was removed until the pool got too cold. He would take a bath at night, and take a shower with Daddy in the morning. We also felt safe to visit splash pads and go camping. Camping! Something else that Nate had been asking to do all year, but we were too worried about dirt and his central line. We managed to sneak in 2 camping trips with our best friends before it got too cold. He played and explored, rolled in dirt and swam in the stream. So much fun!
We have so enjoyed being at home as a family, uninterrupted. Wes and Nate can play for hours, with just their imaginations. When Wes is at school, Nate and Ellie are as thick as thieves. Nate is SUCH a great big brother, he is constantly trying to take care of Ellie, even when she doesn't want the help. One of my best friends nicknamed them Team Wrecking Ball. They can dismantle a room in a matter of seconds. They truly are teaming up against us. Nate climbs up to reach snacks for them both and they lock themselves in a bedroom and eat as fast as they can until Mommy can get the door unlocked. They lock the bathroom door and squirt toothpaste and splash water...somehow so quietly, so I don't know what's happening until it's far too late. They've drawn on each other's arms, then once Ellie let Nate draw all over her arms, legs and face with a red (non-washable) marker...again, so quietly. I can honestly say, after a sigh...and maybe a time out...I genuinely enjoy these moments, even if I don't enjoy cleaning up the mess so much. I hope I always, always remember to enjoy every single moment of their childhoods...messes and all.
Nate has been taking a music class and a gymnastics class. Both classes are so good for him to get to spend some time with teachers and kids his age. A pseudo-preschool experience to replace what he is missing out on this year. He is VERY much looking forward to going to school next year...just like his big brother. The gymnastics class has also been very good for his balance, flexibility and physical confidence. Luckily, he was not left with any major physical deficits...but the small deficits are there and he is working through them and catching up, little by little.
Since Nate's line was removed, he now has to have a needle stick every time we go to clinic, which has been every 2 weeks during his Accutane treatment. He has done very well with these. Of course, it is not his favorite thing, but he is super tough and takes it like such a big boy. Only once did they have trouble getting blood and it was pretty stressful, the other times have been pretty smooth. He has even chosen to do it without numbing cream. He finds having to wear the numbing cream, with plastic wrap over it, for the 30 to 60 minutes before the needle stick to be more irritating than just getting poked without the cream. Really, such a tough kid.
We have been doing bits here and there to raise awareness and dollars for childhood cancer. We still have so much more we want to do. We will dedicate our whole lives to this cause. For now, we are starting small and figuring out where we can make the greatest impact.
Nate has really just enjoyed being a "normal" boy, so much. We are spending as much time with our family and friends as possible, because really, truly, THAT is what life is about. I have no doubt, life is about our human connections and we are trying to make the most of them. Nate has been able to enjoy so many thing that were so difficult for him last year. Parks, birthday parties, family birthdays, amusement parks, trips, "quiet" days at home...he is enjoying it all.
All throughout his treatment, Nate rarely complained. He almost never expressed concern about missing out on things, even though he missed out on so much. Nate only even asked to go home from the hospital a couple times. He just went with the flow, somehow knowing that these treatments were the most important thing. I really didn't think he even knew he missed out on anything, even though it was so hard on me to see him miss out. He knows, though. He knows to make the most out of every moment. He wakes up in the morning and says, "What are we doing today Mommy? Where am I going?". He wants adventure and memories and we are trying hard every day to give that to him. He was SO excited about Halloween, enjoyed absolutely everything Halloween related and had so much fun. Now that Christmas decorations are already showing up all around, he is getting so, so excited...and we are so, so excited for him. He deserves to have absolutely nothing but fun and joy this Christmas season...last Christmas season was so hard.
Nate now has mild to moderate high frequency hearing loss as a result of chemotherapy. It is not quite enough of a deficit to notice. He compensates for it pretty well. Long term, though, it will definitely have an impact on his learning and reading. So, he was fitted for hearing aids in the middle of October. Nate chose his favorite color, super hero red, and has done really well with them. He has no problem wearing them and seems to like his "super ears". When I first asked him if he liked them, he said, "Yeah! Now when I talk, I can hear the words in my mouth.". We'll take it. I think it's his 3 year old way of saying that they are helping him.
Nate finally completed front-line Neuroblastoma treatment on November 5th...after 16 months. The short description of the treatment he went through over the 16 months is...6 rounds of chemo, 2 major abdominal surgeries, a stem cell transplant, 12 doses of radiation, 3 rounds of antibody and 6 rounds of Accutane. Sixteen months ago, I can honestly say, I didn't see an end. It seemed so far away. We are thanking God and are so, so grateful to still have such a happy, healthy, goofy boy at the end of all that.
Unfortunately though, this is not the end for Nate. We will keep updating, but we have chosen to enroll Nate in a 2 year study for Neuroblastoma children in remission. The study uses an oral medication, DFMO, that has shown little to no side effects and they are hoping, will help keep kids in remission. We feel like the timing of this study has kind of fallen in our laps. It will not require any hospital admissions, but will require some travel. We will keep everyone updated as we learn more.
This week is scan week. One of my least favorite things. Tomorrow, Nate and I will spend the whole day at the hospital while he gets kidney and heart tests done. Then, he will be injected with a radioactive marker for scans on Wednesday. Wednesday, Nate will be put under anesthesia for a CT and MIBG scan, and bone marrow biopsies. Thursday, we have an appointment for results. This week sucks. We are acutely aware that by the end of this week, our world could come crashing down again and Nate could be in for a fight for his life. I am praying every moment for the strength to BELIEVE...and to not pass out and/or vomit. Please keep Nate in your prayers this week as we wait for those 3 letters that we love so much, the 3 letters that will allow Nate to continue to live his life to the fullest...NED!
