Hello ya'll and welcome to my blog. (please read the entire post.. details about card drive at bottom)
Today's post is about a lil boy I have recently been acquainted with and would love to share his story with you. He is so brave and his story hits home for me .. again.. (you may remember lil Aiden, he is doing well and started kindergarten only a couple days ago. He LOVES it)
First.. let's give you a little background info on how I came to find out about Nathan...
Well, most of you know about my son Colton. He is diagnosed with Apraxia and doing so well!! Throughout our journey, I found a FB group that was not only informative, but supportive as well. Long story short... there was a lady who has 2 cute little boys who also have Apraxia, among other diagnosis .. and she shared on her FB about one of her little boys getting a pair of cool shoes from Peach's Neet Feet. ( click to find out how YOU can help) Anyways.. I visited Peach's FB page and then her web site and felt I SOOOO had to do something to help. I believe ONE PERSON can make a difference. So, I made a donation. I later got a message about the boys I sponsored shoes for . I went to Nathan's Caring Bridge page and WOW!!! It hit me.. he reminds me of my little active 4 year old. I asked myself so many questions and decided to message him on Face Book (via his mommy and daddy of course). I asked about sharing his story and his mom was totally on board!! She wants everyone to know about Nathan and how his diagnosis came to be.
Here is an excerpt from Nathan's Caring Bridge:
"Hi! I'm Nathan and I'm 4 years old. I have stage IV Neuroblastoma.
A little more about when and HOW : from Nathan's Caring bridge
"Background StoryOn Saturday, April 28th, I had a t-ball tournament. My leg was really bothering me and wouldn't let me run the bases. Momma just thought I might be having some growing pains so we went home after and got lots of rest. Sunday my leg was still hurting and I lounged around at home all day. On Mondays I go to physical therapy for my tip toeing so Dr. Bob looked at my leg and said I probably pulled a hamstring. He taped my leg up and rubbed some feel good cream on it. Tuesday evening I was running a low grade fever and my leg still hurt. Wednesday, May 2nd, we went to see Dr. Morrow. I was feeling so much better and climbing all around and even doing jumping jacks. Dr. Morrow thought I may have had a virus that settled in my joints in my leg. We decided to see how I did the next few days and if it didn't improve to come back on Friday and do an x-ray and blood work. Thursday and Friday I felt great. Then Friday evening and Saturday I had a low grade fever and my tummy was hurting really bad so momma took me to urgent care. They looked me over and gave me levsin for tummy cramps. Sunday I still hurt really bad and had a fever of 101 so momma took me the ER. Daddy met us in the ER since he works on the 8th floor there as a RN. After a long time they decided to do a CT scan to rule out an appedicitis. Momma and daddy were really scared about that possibility. They never expected to find out I had a mass above my right kidney and here the words "possibly cancer". We were then transferred to the oncology floor at OU Children's Hospital. Check my journal entries for what happened next. "
To visit Nathan's Caring Bridge, Click HERE!!!! His site is maintained by donation.. every penny helps. He also has some AWESOME tshirts for sale with a dinosaur on them!! find out how you can order by going through his photos.. you will see the shirt there.
How is Nathan now?
newest journal entry :
Round 3 lingers while round 4 looms...
Written Jul 31, 2012 12:28pmIt has taken me a while to update since the Friday we were supposed to go home. Honestly, I really like to keep these posts positive and it's been hard to stay positive lately. I would start to write out an update and...just couldn't. Things are finally starting to look up!
Picking up where I left off: We were supposed to go home on Friday, but we just didn't feel like Nathan was ready so we decided to go ahead and wait. He was still vomiting at 10:30 pm, but luckily that was the last round for a bit. Saturday was much better! He was finally drinking a little. We were told all day he just needed to drink and then we could go home. So at 4:00pm we got serious. Nathan and I made a sticker chart and drew lines on his cup. Every time he reached a line he got a sticker and when his chart was full he would get a big prize! This worked great. He finished the whole cup and then we were told he had to drink 2 more full cups! Ok, really, he was on 100% maintenance fluids. He wasn't thirsty! However, we did it! Yay, we get to go home! I ran home and traded out the cars and went back to pick up Nathan and John-Henry. Only to be told, nope, Dr. Sexhauer said we can't go home! Ugh! Somehow there was a big miscommunication so Nathan never got his Zofran that night either. Of course, just as Dr. Sexhauer comes in to discharge us, Nathan is throwing up again. His exact words, "this changes everything! He's not going anywhere, he's still barfing!"
After a long and trying day, we did get to go home later that evening. We really just felt like if he could go home he would get better and feel so much better around his own comforts. He didn't. For the next week he stayed in bed and only took nibbles of food here and there. It was a difficult time to say the least. Thursday we went to clinic and he got a blood transfusion. That seemed to help a little and Friday he did start getting out of bed for very small amounts of time.
On his last CT they saw that Nathan has a gallstone. It wasn't really addressed since he had not been having any issues with it, but over the weekend he has been experiencing sporadic stomach pain. We think the gallstone might be the reason. Right now we are giving him pain meds to help as needed. His appetite is finally back and we are so very thankful for that! His counts are low right now and he is neutropenic. So pray for no fevers!! He is supposed to have round 4 Chemo on Monday but they don't expect him to be ready due to his low counts so it will most likely get postponed. We will keep you posted though!"
PLEASE.. say a prayer for Nathan and his family as they fight this!! Prayers go a LONG way!!
I am doing a card drive for Nathan!! Yes.. I'm excited aren't you??
So, what lil boy wouldn't LOVE cards from all over the world?? A few encouraging words as he fights this!! The cards don't have to be fancy!! I'm sure Nathan would LOVE a card from YOUR little person.. heck, a folded piece of paper with a drawing would TOTALLY put a smile on his face!!!
I have been asked about what he likes?? Well, dinosaurs, MARIO (his bday theme this year), and Hot Wheels!! Again, I am sure he would be tickled with whatever you sent him!! I am asking that all cards be sent to me.. and I will send them in a box to Nathan. (for the privacy of the family.. hope you understand)
c/o Tanya Stilwell
P.O. Box 143
Cecilia, KY 42724
Please visit Peach's Neet Feet on Face Book. Madison "Peach" has done amazing work and has put soo many smiles on so many faces!!! Be sure to hit "LIKE" while you are there.
Thank you for stopping by and sorry about the long post. I really couldn't make it any shorter as Nathan's story deserves soooo much more!! I will do updates about Nathan .. PLEASE share this blog post with your friends!!!
I look forward to the awesome mail and can't wait to start shipping to Nathan.
Until next time..
Hug your kids TIGHT.. make sure they know you love them... and say a little prayer for our new friend and his family.