CAMP TIME!!!!!!

Ok this post is a little old but I am finally getting around to posting it.....

Last week (July 16th)we took Kyle to his (well all of ours first) first Camp for NF. We attended a family camp put on by NF Arizona Incorporated. Camp NFirework!!! It was awesome. It was held up in beautiful Prescott! We were able to attend Saturday night-Monday. We already cant wait for next year!

I truly never would have guessed how much a couple days could change so much. The people we met were incredible. What an amazing support group. Everyone was so nice and genuine. We even received several offers for new babysitters (they even gave us all their contact info) Bennett and I are dreaming of possible date nights now!! ha ha

You felt such a connection as you knew of these families were all effected with NF also. They understood the anxiety, the medical procedures and all the doctors appointments. They understand the daily dealing with NF because they have lived it. There is a certain kind of quiet power and peace that comes from knowing that. At times nothing even needs to be said because it is felt.














Kyle made a great friend while there, Jack. Jack and Kyle were inseparable from day one. From the minute they met. Kyle ran up to Jack and showed him his arm. He then asked Jack do you have spots like me? And gave him a big hug!! Jack doesnt have NF but his mom and older brother does. They spent the rest of camp together and sharing their treasures with each other. Kyle loves Glo Sticks, so we had taken up several. Kyle got the green ones (of course) and Jack got all the yellow ones. Kyle still asks for Jack and we are going to get those little buddies together for sure.

























I am so grateful for camps like this and now I am even more excited to send him to camps when he is older and as we continue to attend the family camps. I can not even imagine how much strength, growth and life long friendships that await Kyle at these camps. It truly gives me the chills to think about.

We also received Kyle's acceptance letter into the Prekindergarten program! I am SO excited!!!! I love love school. I have a passion for school and even weirder I have a passion for school supplies!! ha ha No really, ask anyone! I have already gotten Kyle's backpack and some supplies, I cant wait for open house!!! I have been working with him this summer and he can spell his name and spell mom & dad, count to 15, can do simple addition and subtraction, we are working on telling time and even throwing in some science and are working on the body. Kyle is fascinated by the body and his bones, blood, etc. I imagine this comes from all his doctors appointments and procedures. Love that little kid!!!!

That is about all for now. Kyle doesnt have an MRI or eye appointment until October!!! But we will continue to update (especially since ASU Football season is getting ready to kick off in about a month!!!!)

We hope you all have enjoyed a great summer so far!!!

The Oden's

CAMP TIME!!!!!!

Last week we took Kyle to his (well all of ours first) first Camp for NF. We attended a family camp put on by NF Arizona Incorporated. Camp NFirework!!! It was awesome. It was held up in beautiful Prescott! We were able to attend Saturday night-Monday. We already cant wait for next year!

I truly never would have guessed how much a couple days could change so much. The people we met were incredible. What an amazing support group. Everyone was so nice and genuine. We even received several offers for new babysitters (they even gave us all their contact info) Bennett and I are dreaming of possible date nights now!! ha ha

You felt such a connection as you knew of these families were all effected with NF also. They understood the anxiety, the medical procedures and all the doctors appointments. They understand the daily dealing with NF because they have lived it. There is a certain kind of quiet power and peace that comes from knowing that. At times nothing even needs to be said because it is felt.

Kyle made a great friend while there, Jack. Jack and Kyle were inseparable from day one. From the minute they met. Kyle ran up to Jack and showed him his arm. He then asked Jack do you have spots like me? And gave him a big hug!! Jack doesnt have NF but his mom and older brother does. They spent the rest of camp together and sharing their treasures with each other. Kyle loves Glo Sticks, so we had taken up several. Kyle got the green ones (of course) and Jack got all the yellow ones. Kyle still asks for Jack and we are going to get those little buddies together for sure.

I am so grateful for camps like this and now I am even more excited to send him to camps when he is older and as we continue to attend the family camps. I can not even imagine how much strength, growth and life long friendships that await Kyle at these camps. It truly gives me the chills to think about.

We also received Kyle's acceptance letter into the Prekindergarten program! I am SO excited!!!! I love love school. I have a passion for school and even weirder I have a passion for school supplies!! ha ha No really, ask anyone! I have already gotten Kyle's backpack and some supplies, I cant wait for open house!!! I have been working with him this summer and he can spell his name and spell mom & dad, count to 15, can do simple addition and subtraction, we are working on telling time and even throwing in some science and are working on the body. Kyle is fascinated by the body and his bones, blood, etc. I imagine this comes from all his doctors appointments and procedures. Love that little kid!!!!

That is about all for now. Kyle doesnt have an MRI or eye appointment until October!!! But we will continue to update (especially since ASU Football season is getting ready to kick off in about a month!!!!)

We hope you all have enjoyed a great summer so far!!!

The Oden's

Bad eye exams, Birthdays and More....

I know I have been terribly remiss in posting on this blog. So I will try to get caught up here.....

In January Kyle had an eye exam. I was nervous and kind of hating on the Opthamologist. ( I know not his fault, but I NEVER seem to get good news when I go.) Again I had to go by myself, never fun. They did the exam and wanted to dilate his eyes because the vision in his left eye had gotten worse. Talk about fear reaching out and gripping my heart. Why does it seem that those 20 minutes in the waiting room waiting for the dilation always seem like the longest in my life. So many emotions and thoughts were running through my head. Well when we went back they couldn't see anything so our eye doc was going to call and talk to the Oncologist about moving up his MRI. His vision in the left eye went from 20/20 6 months ago to 20/30 in Jan. I know that doesn't seem like much but when the right eye is 20/800 every little bit is hard to take. They moved up his MRI a couple weeks. Kyle did pretty good with the MRI and was talking about how they were going to take pictures of his brain. Such a brave little boy....

We then met with his Oncologist & Geneticist in early Feb. The MRI showed no new growth and that the left optical nerve was clear. So they are chalking it up to him being 3 and just having a bad eye exam. But it change our appointment schedule from every 6 months eye exam to every 3 months eye exam. And for a couple weeks it was really hard. One thing we had noticed was that he was squinting a lot more with his right eye. And seemed to be having problems. So we talked to the Geneticist about this and basically Kyle has just enough vision in his right eye to be causing him focusing problems. He gave us a few things to teach him at home and Kyle had already started doing some of them. But if he continues to have problems the doctor said we might need to patch the bad eye so it wont interfere. I just broke down, just starting sobbing. I have gotten much worse news over the last 2 years and felt a little silly for breaking down at what would appear to be something small. But I guess part of it was that who knows what will continue to happen. I had a concern and come to find out it was valid. It is something else to keep an eye on (no pun intended). If my son needs a patch on top of glasses I will of course do it. But I will not lie I started getting mad, fists clinched, seeing red at the tumor mad. If the tumor had a face I wanted to punch it, I wanted to yell and scream and tell that darn tumor to get out of my sons head. It was kind of weird, I had honestly not had that emotion over the last 2 years. I admit I threw a couple things and did feel better. And then as we have done for 2 years picked up the pieces I could and moved on. What else could I do? Hang on to my anger? Who would that benefit, no one and certainly not my son who needs me. So melodramatics are over and we are doing fine now. :-)

My first fundraiser for Children's Tumor Foundation was this past Saturday. it was Spring For A Cure Family Festival. We had games, petting zoo/pony rides, bouncy houses, food, craft vendors and a balloon garden hosting over 9,000 balloons!!!! And to date have raised $1450 and I still have some checks coming in. I was very happy for my first efforts and I am already working on my next fundraiser!!!!

Today is also Kyle's 4th Birthday!!!! It hardly seems possible that my baby is 4. He informed me today that he is a very big boy now! But he did let me cuddle him for a minute. The above picture was right after we started chemo and he had just turned 2. Here is a picture from Saturday. I cant believe how much he has grown.......

Also after some encouragement from a dear friend I finally was able to finish a poem. I wanted to write something for Kyle, something of our journey. I hope you like it....

I remember it well, it was on that cold January day
the vision is gone and wont come back is all they could say
The Tumor was still there the damage was done
What has happened oh my dear son

We put you through chemo with great hope
You are so young and precious how do I cope
I fight for you, I fight like no other
Because that is what I will do, because I am your mother

There is no cure, the future uncertain
It pains me to think of how you might be hurtin
At times it grips my heart, the unknown, the fear
I hold you close, you are my everything my dear

But the love for life shines in your eyes
And turns the dreary clouds to blue skies
So on this cold January day
I love you forever and ever I say

We will face the uncertain future together
I will fight for you in all kinds of weather
We will fight for a cure one day
Because then over NF we will have the final say

This is Kyle's dad doing the update this time.
ASU football season is over. We are very thankful for FOJ and ASU football for everything.
We had 2 tv interviews one local for Fox Sports AZ and the other for a program called Running with the Pac. A great article from a great new friend Nick. http://arizonastate.rivals.com./content.asp?CID=1160079
Then at the UCLA game fox sports did a half time spot on him. During the UA game Rece Davis gave a "shout out" on him. When we got selected with the team it was not in our wildest dreams for all of this. We are very happy to get FOJ, ASU football, and NF information out there to people who have never heard of it.
Kyle is doing well and enjoys seeing his "Sparky Friends" and running all over the field before the game. Thank you to all the players who took time to come over and play with him at home and on the field.
I now have 3 teams in college football. 1. Texas Aggies. 2. ASU. 3. Whoever plays t.u.
Thank you all for your support and prayers. We are forever thankful for everyone who reads this and enjoys the updates.

My Heart is Full.......

My heart is full today with thoughts of NF. As I reflect on my life and the path NF has taken my family my heart and mind cant help thinking of the amazing people I have met. Amazing women that help lift me and inspire that if it werent for NF would never be in my life.

I have been working my fingers to the bone lately it seems like working on my fundraiser Spring For A Cure. http://www.springforacure.blogspot.com/ some days I feel like I am talking to a wall. Some days I have such fierce passion to help find a cure that I get tears in my eyes and I feel like I am stronger than Wonder Woman. I am Wonder NF Mom!!!

As I reflect on what inspires me and what gives me strength to continue valiently on this fight 3 things come to mind as to where my inspiration comes, what feeds that inner fire in my belly?......

1) First and foremost it is my love and faith in my Heavenly Father. I know he will not give us more than we can handle. And that through our trials he brings great blessings as well. Those blessings (in part) are #2 & #3. I know that he loves me and wants to see me be the person he knows I can be. He knows my full potentional and his trials are to help me reach that potential. He knows the greater picture and even though at times I dont see how good could come from a 2 yr old having a tumor I have faith that he does. And I have faith that through me I can help bring some good about.

2) Kyle. When I think of what he has gone through and how much he loves life and just has fun and is always ready to go I get teary eyed. I dont know if there could be prouder momma out there. He is the greatest blessing in my life. Sometimes I cant believe the lord has trusted him to me. I feel a great weight in being the mom he needs me to be. How can I not fight to make his future brighter? He loves me unconditionally. I will fight for him every inch of the way.

3) NF Moms. NF Moms are some of the most amazing women you will ever meet. Our kids have been diagnosed with a disorder that not many have heard of. Our kids have been diagnosed with a disorder that various from person to person, a disorder that can go from mild to fatal within a short amount of time. NF Moms find time to support other moms when they are crying about the uncertainty of their own children. NF moms will get in NF's face and raise $40K at one fundraiser for research in the name of their daughter, NF moms will talk to total strangers to spread NF awareness. And I say NF moms but dont be fooled there are NF Aunts, Cousins, Sisters that get in and get their hands dirty all to support the ones we love with NF. I have personally received such great strength and support from women across the country. Woman I have never met but I know they are there for me and I hope they know I am always here for them.

There is one NF mom that has been on my mind a lot lately. She is a very dear sweet NF mom that has NF herself. Her son was also diagnosed with NF. He is her life. She lives every minute for him even though it has been almost 2 years since he earned his angels wings. But Noelle is amazing. She took her trial and pain of losing her son and created a foundation in her sons memory, http://www.stuffedanimalministry.org/ . She collects new stuffed animals and sends them to children with NF, also provides them to the Police and even the FBI to give to children in crisis. As of February of this year she has given away over 400 animals.

With NF 3-5% of the cases turn malignant and these brave children/adults can lose the battle with NF. I have met so many amazing families affecting by NF and all cases are so different.

Everyone can do something. One mom is auctioning her daughters drawings, others are are hosting support groups, helping inform the community at booths at community events, others are holding fundraisers. If you dont have time or money to do some of these things, never fear there is something you can do.....Educate!!!!

The single most important thing we can do is educate ourselves and educate others. I have always said "knowledge is power". We dont have to sit back and just accept NF. So please join me and Fight, Fight, Fight against NF!!!

wow......Where have I been?.....

Ok so you might have thought I fell off the face of the earth. And while I wont deny it at times that does sound lovely....I havent.

Kyle had his last chemo treatment on May 17th 2010. And an MRI the end of May and then another August 12th. Both of these MRI's showed the tumor has remained stable even off of chemo. So Kyle is scheduled for surgery September 13, 2010 to remove his port.

It is a weird mix of emotions I have as we face surgery. I am thrilled that a fever will now just become a fever. No Phoenix Children's Emergency Room pulling an all nighter. No worrying about his blood counts. But on the other hand we are done with chemo, his port is coming out but the tumor is still there, his vision is still lost.

The other day Kyle told me he had a black eye. I was thinking what int he world does he know about a black eye and started to tell him he didn't have a black eye. But then something told me to as Kyle where his black eye was. He pointed to his blind eye and said "Here mommy, this is my black eye". It caught me off guard. I guess I didn't think at such a young age he would understand that he had no vision in that eye. Or that he would be able to express it. So I told Bennett and later in the day when Bennett was playing with Kyle he asked him about his black eye. Kyle again showed daddy his "black" eye. Bennett gave him a big hug and told him it was ok. And that even though he had a black eye he could do anything he wanted. Kyle hugged daddy and said "Yeah, its just my yucky eye" and went right back to tackling daddy and playing and if nothing was out of the ordinary.

Kids are so amazing. The are resilient and can teach us so much. These little ones going through such adult sized trials don't even realize it. It is the adults that stress and worry so much. Because of how we think it should be. And while yes kids should never have to suffer the pain and loss many of them do, wouldn't it be wonderful if we all viewed the world through a child's eye a little more.

Stayed tuned for details on my first ever Children's Tumor Foundation fundraiser......

.....More Hospital, please mommy.....

I never thought I would hear my 3 yr old ask for another trip to the hospital. I never thought my 3 year would be in the hospital to want to go back. I never thought my 3 yr old would know about needles, doctors office, stethoscope and could quote you the whole routine we go through. But he did and he does.

(Kyle said the telephone cord was his Stethoscope)

On Monday April 5th right as Kyle's chemo was getting done he had another reaction to his meds. This was his second time. He started shaking, got a fever and high blood pressure dropped. Thankfully this time they had not taken his needle out yet. So they drew more blood for labs and cultures. We thought we would be there a few more extra hours like last time this happened. So I think Bennett and I were in complete shock when the doctor said she was admitting him to Phoenix Children's.

His regular chemo doc was doing rounds in the hospital but came right over once she got the news. All I could keep thinking was we made it so close with no hospital stay. We were 4 treatments away from being done with chemo. We almost made it, but not quite. Our doctor was so nice and reassuring. She thought if all the blood work came back ok we would be out by Wednesday. We ended up waiting 5 hours for a room to open on the Oncology floor at Phoenix Children's.

We finally got settled and I left for home to pack Kyle and Bennett a bag. My dad went back to the hospital and when I got there our Home Teacher Brother Chapman from church was there. I finally got home around 11pm that night. The house was so quite and still. So this would be the way I spent my first night away from my precious boy in his 3 years. Bennett took the first 2 nights. I could see in his eyes that he couldn't leave his boy. He needed to be there to make sure he was ok.

The next day we found out that they had put him on triple antibiotics so that extended our stay at least till Friday. And he would indeed be getting a blood transfusion. Another thing we came close to not needing. But I am glad it happened in the hospital. He did just fine. His red blood cells had dipped to the high 7's. They really like them to be in the 10's or 9's. 8's are ok if the dont have any other symptoms. Both of our work were very understanding. I went in Wednesday to get the critical stuff done. I couldn't wait to get back to the hospital. While I was at work our driver brought me a colored construction paper "book" I found out that his mom works at the daycare Kyle goes to. His class had made him a get well book and all the teachers wrote notes. It brought tears to my eyes. It was the most beautiful book I have ever seen.

We can not say enough wonderful things about Phoenix Children's Hospital! From the moment we made it to the room people were there to make sure we had what we needed. They brought Kyle his very own pillowcase. It was Baseball, boy was he excited!!! The nurses were quick and efficient with everything they needed to do. And then Kathy from Child Life Services came by. They had a playroom and it was open for the evening. Kyle LOVED that place. He would open it up and close it down. More than once we had drag him crying from the playroom. Dad holding Kyle and Mommy pushing the pole behind them. Bennett's birthday was spent in the hospital. Our wonderful social worker Gina arranged for a cake since I had no idea how I was going to sneak out to get one. Annie, Kyle's favorite nurse came to see him. I missed it but I am sure he was thrilled. Bridget and a couple other nice ladies came from HopeKids to see Kyle. He was sleeping but the visit did me a world of good and I got the family next to us introduced to HopeKids. Kyle might even be on TV!! Channel 12 came through filming some kids for a fundraiser for Phoenix Children's.

The little boy next to us (shared room) was Angel. He was 5 1/2 and just had surgery to put his port in. He has Leukemia and will be on chemo for 3 years. His prognosis is good but our hearts go out to the family. We wish Kyle's little roomie and his family all the best. I still think of them often and hope they will be ok.

Kyle was excited to come home as was Bennett and I. It felt weird like we were just going home from a normal treatment. Just as quickly as the ordeal happened it was over. It felt strange. I felt as though I was suffering from Jet lag but I never left the state. I told Bennett "We came, We saw, We conquered. Now lets go home".

They don't know why Kyle is having these reactions. His blood work comes back normal and the cultures dont grow anything. Next time he has chemo they will give him benadryl and hope that helps.

Kyle is doing great! In fact like the title says the other night he asked to go back to the hospital to play. I told him no mommy and daddy wouldn't take him back to the hospital. He started fussing so I told him maybe later. He said "Yater?" I said maybe. That seemed to be enough for him because he ran off to play.

If you ask him about the hospital or the "stethoscope" he will tell you all about it. He will show you were the doctor listens with the stethoscope and what his heart says "Boom, Boom". His favorite part of his weekly exam is when the doctor checks his reflexes.

Things are finally getting back to "chemo" normal life. I keep thinking this time last week we were doing this, or that in the hospital. But it is over now and I conquered 3 fears last week. 2 chemo related, 1 mom related. I conquered Kyle getting a blood transfusion, a hospital stay and spending the night away from him.

I know there were many prayers said on our behalf. We cant tell you how much this means to us and that truly our Saviors love helped us through the hard times last week.

Kyle goes back for chemo on April 26th with only 4 more scheduled chemo appointments at this time. After that we get another MRI and if it shows the tumor is stable we will get the port removed from his chest. At that point we will be on mri's every 3 months for the first year. Sadly the tumor has not shrunk as much as we would have liked. It really hasn't shrunk at all but it is stable and the doctors remain to be happy with it.

This ended up very long and I thank you if have made it all the way through.

We love you all!!

The Odens