Luv My NF Boys

We are the lucky ones.....

2011-10-02T19:34:00.000-07:00

I have recently been working on my fundraiser for Children's Tumor Foundation (CTF) Spring For A Cure 2012. It is our second annual family festival. I have been contacting last years vendors and looking for new ones. One vendor I found was www.squarezpies.com they have a "flavor" on the month and donate $1 of each sale to a charity. After some rescheduling they found themselves on September 28th without an October Charity. That was also the same day I emailed them. So guess who became their October Charity? CTF!!!!! I had one day to write up a blurb to be included in their monthly email.

In writing my blurb on CTF and what they do and what NF is, my mind recalled all the amazing people I have met since starting this journey of being a NF wife and mother. My mind raced with all the different ways NF manifests itself. NF is as different and unique as the individuals that have it. I found myself writing that my husband and I really do consider ourselves one of the lucky ones, it didn't hit home until I actually typed it and verbalized it, that I realized.....YES we are one of the lucky ones.

And I love the supportive NF family you become a part of online through blogs, facebook and if you are lucky even in person. There is an awesome Facebook group called "NF moms rock" they really do rock. Talk about a source of support 24/7. I never have to feel like I need to apologize for my feelings, fears, worries or rejoicing at small victories such as a stable MRI.

And I love the way the news of a family needing support and prayers runs like wild fire through the network of NF families. When we hear of a bad MRI or counts to low for chemo we get out there and we pray and we repost for more prayers from others. We NFers are a force to be reckoned with.

And I love the response I have gotten from organizing Spring For A Cure. The help and the well wishes from complete strangers. One of the vendors thanked me for being an ambassador for NF....ME, I couldn't believe it. I never thought of it that way, none of us moms or dads do. All we know is we are fighting a ticking time bomb with our children's lives to find a cure. And along the way when we lose one of our group to NF we mourn collectively as a family does. Because we are, NF has made us a family. At times my NF family is what has gotten me through one more chemo treatment, one more MRI, etc.

There is power and strength in numbers and it is great to see our NF family grow, because that means we are getting stronger than NF. We are making it to a cure one step, one fundraiser, one chemo appointment, one MRI and one tear at a time.

The awesome feeling that comes from having this on your shoulders can be empowering and overwhelming all at the same time. The Lord has blessed us with this task and so even though I didn't think about I will try to live my life each day to say I AM an ambassador for NF. I do it for my husband, for my son and for everyone else effected with it.

Together we are unstoppable!!!!!!

Watch out NF.....WE WILL ROCK YOU!!!!

Hug a little tighter and more often, say I love you's unceasingly....

2011-09-21T10:34:00.003-07:00

The other day I got a CaringBridge notification for Christopher. A young man I had recently found through another NF moms post on Facebook. He was not doing well. I went to his page and read his story, journal updates, sent a card in answer to a request from his mom and posted comments. (maybe it is just me but I love and find comfort in comments people leave me)

Christopher was Cindy's only child and son. My heart clenched when I read that. Kyle also my only child and a son I felt an immediate connection with Cindy. Every time I got a notification over the last month I feared the worse for sweet Cindy and the rest of Christopher's family.

That final notice came a few days ago. Sunday the 18th, sweet Christopher passed away. His mother writes such lovely updates. You can read his story http://www.caringbridge.org/visit/chrismcclaskey. Christopher was diagnosed with a brain tumor due to a complication of NF about 3 1/2 years ago. And fought a courageous battle since.

As I read this Monday I cried, sobbed, tried not to think of all the what if's our own uncertain future brings. Monday I hugged Kyle and kissed him every moment I could all the while trying to hide the tears forming in my eyes. I caught myself fussing at Kyle Monday night and felt so guilty. Thinking Cindy would love one more chance to "fuss" at Christopher, to then immediately hold him tight.

This is the 3rd person in the 2 1/2 years since Kyle's diagnoses that I have "met" someone in the online NF community to pass from NF. They have ALL been to young! Ages ranging 14-23, to soon. I think, at least for me when I hear of someone in the NF community passing away my heart seizes up at the fear that grips me. And then I get fighting mad! ha ha I push forward, raising awareness, offering support where and when I can. And then I hold Kyle a little longer, a little tighter. Wishing with all my heart I could bottle up these moments so that I never forget. Wishing I could somehow hang on to the feeling of him in my arms, his little arms around my neck hugging me tight. Saying "Mom, you are my biggest friend".

I cant believe Kyle is already 4 1/2. Where has the time gone? As I tried to cuddle/rock him like I did when he was a baby I told him to stop growing up. He looked at me puzzled and asked why. I told him cause I missed my baby Kyle. He patted my shoulder and said its ok mom! Oh to have the quick reassurance that he has.

It has been said before, time is precious, or you don't know what you have until it is gone. That is so true and on one hand I hate that those of us in the NF community are reminded often that we cant take anything for granted. And on the other hand how great is it to be reminded so often that we hug our little ones so often and comfort others in need.

This week I have been pondering on this a lot. I can not change the future with fruitless worry. I can not control how long Kyle is here on this earth only God can. All I can do is treasure every moment like it is more precious than gold because it is, all I can do is fight the hardest I ever have for him, all I can do is love him, plan for a long and healthy life and take comfort in knowing he is mine fore eternity.

Kyle mom loves you more than you will ever know. I think I love you more than even I will ever know. Some days my heart is so full of love and pride (you know the good kind) that I feel it will burst. I am so happy and filled with joy it is dizzying and I have to catch my breath. You bring nothing but joy where ever you go, whatever you do and to whom ever you come in contact with. I cant imagine life without you and feel so blessed that I get to call you son.

Sneaky NF

2011-09-13T15:18:00.001-07:00

You sneak in here
You sneak in there
Why NF do you sneak in everywhere

I have talked before about being a mom with a child who has special needs. We get the priviliedg of worry even more over our precious children.

One thing that has been on my mind lately (after a discussion with Kyle's teacher) is that with NF many times it is not obvious to others that anything is out of the ordinary. I should say depending on how NF effects you that is. We have all certainly heard the stories about the visible tumors that make it hard to be mobile, the ones you cant cover up and the ones that others can still under the clothes due to their size. But when NF effects you internally others do not know. After we stopped chemo I kind of felt like some "forgot" Kyle had a brain tumor. Since he had no outward signs they felt life should be smooth sailing.

But I know he still has a brain tumor, I know he is still blind in one eye. I can see the struggle he has going up and down stairs. I know it isnt age appropriate for him to turn and crawl down stairs. But others do not know that my boy cant see out of one eye. They see his cute glasses and call him the Jerry Maquire kid. (yeah we get that a lot! ha ha)

In the beginning of 2011 I started noticing some little things that were becoming more difficult for Kyle. Nothing kept him down that is for sure and he figured out a way around things. And most people wouldnt have even noticed. But I did, I am his mom, I know. I asked his Oncology team in the spring if they thought we needed to get him evaluated. I wasnt sure if all 4 year olds are still unstable on their feet and having problems with depth perception. We had him evaluated by the Arizona Foundation For The Blind when he was 2 and we started chemo. At that time he amazed everyone and they couldnt believe he was blind in one eye. So since his team in the Spring said just keep an eye on it I figured it must be normal.

The Kyle started school in August. As fate would have it he was assigned to the classroom with stairs and not the one with a ramp. Almost immediately I noticed the difficulty he was having going up and down and then it was cemented when I saw the other kids running up and down then, no holding on now crawling or hesitation. I know it was time to get him evaluated.

I first emailed my good friend Diane S. who has worked for years as an Certified Occupational Therapist Assistant. She is someone I look up to, admire, value and respect her opinion. I hoped she would give me some things to do at home and that he should be fine. But she encouraged me to do what I knew I really needed to do. Contact the school district and get him evaluated. So I spoke with his teacher and got the number to call. She didnt know he was blind in one eye. Pretty sure I wrote that in all the registration forms. But it was nice that she didnt know anything was wrong. (again with no one being able to tell something was different)

So I called the number she gave me and I dont know who I thought would answer but it kind of took me back when they answered Special Education Department. It is weird because I know by definiation I have a son with special needs but Kyle acts so normally that even I sometimes briefly forget he would be considered special needs. So we made an appointment for October, he is also up for another MRI in October.

So I anxiously wait for the evaluation, eye exam, MRI and meeting with the Oncologist/Geneticist all in one month. Its going to be a busy month!! ha ha

I am still putting off trying to learn Braille. I still feel I need to do it. But man oh man it seems so overwhelming. Such a monumental task. I started reading up on it a little a few months ago. I know I just need to dive in feet first, just the way Kyle would do it!! That boy has a love of learning, a love of life that is catching.

CAMP TIME!!!!!!

2011-08-30T17:05:00.000-07:00

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!!!!!!

2011-07-26T10:03:00.000-07:00

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....

2011-03-09T09:56:00.000-07:00

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

2010-12-05T10:02:00.000-07:00

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.......

2010-10-24T20:13:00.000-07:00

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?.....

2010-08-25T11:42:00.000-07:00

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.....

2010-04-15T19:49:00.001-07:00

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

NF and What Ifs

2010-02-22T14:17:00.001-07:00

In the life of NF there are a lot of What Ifs. I imagine when dealing with any disorder you would have a lot of what ifs certainly more than you normally would if these challenges didn't exist in your life. But these challenges do exist. They are a very real part of our day. They are very real for any parent dealing with NF.

The last few weeks have been increasingly hard, for me anyway. Normally I try not to think or dwell on the what ifs. But here is a brutally honest post about how I am feeling and the what ifs I deal with daily. They might not always be on the uppermost part of my mind but they are always there lurking ready to jump forth.

So here are some of my what ifs (In no particular order).......

1) What if the tumor starts to grow again
2) What if we end up back in chemo
3) What if it moves to the left eye
4) What if kids are mean in school
5) What if he develops learning disability
6) What if more tumors grow
7) What if he cant do what he wants when he gets older because of his disability
8) What if he doesn't like himself
9) What if no one wants to marry him
10)What if he or his wife don't have kids because of NF
11)What if his dad and I aren't strong enough
12)What if I fail him
13)What if I cant be strong enough for more chemo
14)What if we lose him
15)What if the tumors turn malignant

I know there are positive antidotes to every what if on my list and many more that I have had or will have. My rational mind is well aware that you cant live in what ifs and that everything will work out. But my heart and my mommy mind sometimes needs to cry out. I have my faith and I know God wont give us more than we can handle. I know we are truly never alone that our loving Saviour is there every step of the way. But again I am human and sometimes the pain and what ifs seem to much to bare.

I started this post several weeks ago. I am doing better now and am feeling much stronger. I started to not post this but I needed to let go of my what ifs for now and send it out there. I think in part to help me but also because I started this blog to help raise awareness and to help others through their challenges. Sometimes I get down reading various blogs where everything is picture perfect. It is very hard for me to let go, bare my soul and let anyone see the real me, even those who are close to me. But when I think of how my trials might help another parent I cant be selfish and hold on to my feelings. Plus I think by writing down my true feelings it will help me learn and grow. It will help me make sense of a disorder that makes no sense.

Overdue update on Kyle's vision.....

2010-02-12T19:58:00.000-07:00

We had an appointment with the eye doc back in January and I am just now making myself sit down and write about it.......

We finally had an appointment with the Ophthalmologist to check on Kyle’s vision yesterday. Kyle has had no change in his vision from last year. In his right eye his vision is 20/800. The doc said that basically the nerve is dead and his vision wont come back in that eye.Little Kyle though is very ingenious I tell you! The doc put tape over the good eye to make him try and use the bad one. Kyle would turn his head to look at the images differently becuase you see there was a little place over th top of his nose that the tape didnt stick so he was adjusting to use his good eye. He was so sly we almost didnt catch it. But once the doctor sealed that gap up Kyle was not very happy. Well neither would you if your vision had been cut off and some man was telling you to name shapes! ha ha

He prescribed glasses for Kyle to protect the left eye. There is no prescription in the left side it is simply for protection for the eye, because obviously we need to make sure to protect his left eye. Well we have since ordered Kyle's glasses. He loves them and does really well with them. We let him pick out the color. He likes to say he is like mommy and daddy now (we both wear glasses).

Many have thought since there is no improvement to the vision that we can stop chemo. Well unfortunately this is not the case. The chemo was never really about his vision and was more about stabilizing the tumor for several reasons, the main ones being 1) to relieve the pressure the tumor was causing on the optic nerve and his little eyeball 2) to keep the tumor from growing and moving to the left side. We were very hopeful that Kyle's vision would have improved but that just wasnt meant to be for him. He has adapted very well and you would never know that he is blind in one eye at all. Our Oncologists talked to the Geneticist and they decided since the baseline was the same that we should continue with the rest of chemo.

Since his tumor has been stable since September (sigh of inner bummer) our Oncologist is pretty confident that if it remains that way we will be done in May and the port should come out sometime the end of May/beginning of June.

Check out Kyle's fundraiser site

2010-01-28T06:35:00.000-07:00

We are having a fundraiser for Kyle. I have set up a blog for that and you can check it out at www.chemoforkyle.blogspot.com I will be posting some fun giveaways so check often to learn how you can be enetered!! We have already had so many wonderful people help donate items. Thank you all!

I know how to be a chemo mom.....

2010-01-20T15:44:00.000-07:00

A couple weeks ago we discussed the end of chemo with our doctor. For the last year my life has been focused on just making it to May 2010. Then I thought life can get back to normal (or somewhat) I knew we would probably have yearly MRI's to keep an eye on Kyle. But now at the beginning of a new year I realize how close May is and how the end of May wont bring the magical change I had been hanging on to. The doctors are happy with the tumor being stable. Of course as you can imagine Bennett and I as parents were hoping for a little more shrinkage. If Kyle's MRI's continue to show that the tumor is stable the Oncologist says we will be done in May and get the port out as soon as we can.

Well of course so many emotions have been flowing through me like water flowing through a meandering river. Bennett is elated to get that pesky port out of our little boys chest (as am I) Bennett keeps wanting to know if we get to keep it! Ewww gross!!!

I know how to be a chemo mom with a son that has NF. But I don't know how to be just an NF mom in the wait and see phase. I have met so many amazing parents that are in the wait and see phase. Before I was outside looking through the window to that phase. Happy to be window shopping as it were. Well now I find myself with that door open and I am waiting on the threshold. I am not sure I want to go in that store. The store next door has shinny things in the window. Lets go there! ha ha But no, this is the store that is waiting for me and Bennett. We appear to have reservations without knowing how they got made. We will have MRI's every 3 months once chemo is done.

I wrote up a letter a few months ago about Kyle's journey. The closing line on that went something like "...as we continue on Kyle’s journey and see where he takes us!" I reread that last night as I updated the letter with the results of Kyle's eye appointment (another post to come). I realized one thing, it doesn't matter that I don't know how to be a "wait and see NF mom" kyle will teach me, I will continue to reach out to others that have been there. I will continue to educate myself and be able to help those that follow after me. The Lord has helped me be a "chemo mom" he will help me be the best "wait and see NF mom" I can be. I will try to remember that as long as it is enough for Kyle then it will be good enough for me.

And once again I close a letter about Kyle with...

Thank you for your kindness as we continue on Kyle’s journey and see where he takes us!

Be Brave Daddy

2009-12-13T10:58:00.000-07:00

In the beginning of treatment our nurse Annie gave us some gloves and a little plastic syringe to bring home and let Kyle play with and become comfortable with. At first he didnt want anything to do with them. They were put aside and forgotten. Then one day he found them and put the gloves on to wash mommy's or daddy's owie but when we tried "kyles" turn he would rip the gloves off and run to the trash. Bennett will bring gloves home from work occasionally in his pockets. Again Kyle finds them and we go through the routine or Kyle washing mommy's or daddy's but never Kyle. Well this morning Kyle came up and washed mommoy's owie and went to the bedroom to do daddy's. So I went to check on my boys because I heard daddy being upset about the owie. By the time I got there Kyle was actually letting daddy wash Kyle's owie!!! He started to fuss and daddy told him "be brave". So then Kyle showed mommy how he washed daddy's owie and Kyle soothed daddy and told him "be brave" It was such a wonderful moment and I hope that this means it will get easier for Kyle.

Daddy and Kyle are alike?.......

2009-11-19T18:07:00.000-07:00

A couple weeks ago Kyle discovered his Cafe Au La spots on his tummy. He came to mommy and wanted me to kiss his owie better. What a wonderful teaching opportunity Bennett and I were presented with. We told Kyle that he didn't have an owie but that those were his Cafe Au Lait (cafe-o-lay) spots and that daddy had them to. So Bennett showed Kyle his. Kyle's eyes lit up and you could see the connection as he said "daddy spots?", he then turned to me and asked "Mommy spot?" No we told Kyle not mommy only Daddy and Kyle. Daddy and Kyle match, they are the same. Again Kyle's eyes lit up as he exclaimed "daddy and Kyle Match!" and gave daddy a hug. He spent the next few minutes checking out daddy's spots. Having Daddy raise his shirt so he could see them. Then he kept shaking his head like he was sad for me "mommy, no spots. Daddy & Kyle match!" I was so thankful for the wonderful opportunity Heavenly Father gave us to begin introducing NF to Kyle. That is was a beautiful thing and made one little 2 yr old happy to "match" his daddy. I pray for many more positive experiences to teach Kyle about NF.

NF Awareness bracelets

2009-10-28T18:23:00.000-07:00

We ordered NF awareness bracelets for Kyle. The bracelets are a bright green, the NF awareness color. They are made out of silicon like the Lance Armstrong bracelets. Each one is debossed with the phrase "NF Awareness 4 Kyle" (if you click on the picture you can see the wording better). This is the best method of putting a message on these bracelets and last longer. If you want to buy one to help out Kyle and to help raise NF awareness they are $2/ea. You can email me at chemo 4 kyle at yahoo dot com with instructions, quantity etc. Kyle also has a paypal account for his fundraising efforts. It is the same chemo4kyle email. If you have any questions please let me know. We appreciate all the love and support and we are excited to help bring awareness to the NF community!!

Welcome....

2009-10-26T09:17:00.000-07:00

I created this blog to sort of journal my journey as a wife and mother to the wonderful men in my life. I hope to raise awareness to a disorder that is more prevalent than Cystic Fibrosis, Hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs Syndrome combined. Yet not many people have heard of it or understand what it is. NF is either hereditary or spontaneous. In our family it is hereditary. If you have any questions or would like to learn more read this blog, check out the links on the side or please feel free to ask questions. The single most thing we can do to help is to educate ourselves. Knowledge is power. I hope to help shed some light on NF, help other parents on their journey and most importantly be there for my own NF boys.

I fell in love...

2009-10-26T08:33:00.000-07:00

Like many people I had never heard of Neurofibromatosis or NF. It all happened one day when I fell in love with this wonderful man several states away. He would write me poems everyday, we would talk for hours on the phone or instant messaging. We got engaged after only seeing each other once. We both just knew it was right and the other person was the person we wanted to spend forever with. Bennett told me he had NF 1 when we were engaged. He told me that begnin tumors would grow in his nerves and that he had a few removed. He told me that it was genetic and that his dad and grandfather also had it. So I knew there was a chance if we had a son he would have it. Well it didn't change the way I felt about him.

We got married a few months later. And we started on our first journey together to have a family. Only it turned out that I had problems I didn't know about. After 4 years of unexplained infertility I was finally diagnosed with PCOS. We went to a reproductive endocrinologist and within a few months we were ecstatic to find out it finally worked and we were pregnant. Even more over joyed when we learned it was twins. But we were cautioned twin b might not make it. It turns out that Heavenly Father had other plans for us and for tator, what we had called twin b. We lost tator at 8 weeks. But thankfully delivered a very healthy baby boy March 9, 2007. Kyle Bennett Oden was born at 38 weeks weighing in at 9lbs 3oz and 20 inches. It was the happiest moment in our life. Bennett noticed the cafe au la spots right away. So we discussed it with Kyle's pediatrician at his first appointment when he was only a few days old. Our doctor knew about NF and said we would keep an eye on it. Having cafe au la spots doesn't mean you have NF it is just an ear marker. Kyle was always very healthy never had an problems.

Fast forward almost 2 years. in Dec 08/Jan 09 a couple friends asked if Kyle had a lazy eye. I didn't think so but we checked it out and thought there might be something wrong with his right eye. I called and got an appointment with a children's eye doc. We went in on Feb 11th. Bennett had just started a new job and I didn't think much of it so I just took Kyle by myself. They doc came in and examined his eyes and then decided to dilate them. He didn't like the way the right eye looked. It did protrude out farther than it should. The doc asked me about family history. I didn't even think of the NF. Once the eyes were dilated he saw signs of hemorrhaging on the optical nerve and confirmed Kyle had no vision in his right eye. He can only tell the difference between light and dark. On Feb 13th we were in at Phoenix Children's having an CT Scan. It showed a mass on the optical nerve. The next Wednesday we were back at PCH having an MRI with confirmed Kyle had an optical pathway glioma on his right optical nerve, or in nonmedical jargon he had a tumor. We met with a pediatric neurosurgeon, a geneticist to confirm NF and finally met with an oncologist. In March Kyle had a port placed in his chest and in April we started a 13 month regimen on chemo to shrink the tumor. The doctors were hopeful that we caught it early and that Kyle should regain most if not all of his vision. We did 10 weeks straight of chemo every Friday as an induction period. Than we had 2 weeks off where Kyle got another MRI. It showed the tumor was stable. Bennett and I hoped for something better because Kyle's eye had gone back in the socket. We did find out that the tumor was causing so much pressure that there was a lot of swelling. So with the chemo it alleviated the pressure and so the swelling went down. We are now on maintenance which means we have 4 weeks of chemo and 2 week break. Kyle had another MRI on September 21 and it showed the tumor had shrunk slightly. We were overjoyed that we seemed to be going in the right direction. We took Kyle out for pizza and arcade games the day we got the news. We are set for another MRI in December and hope for more improvement. No matter how small as long as we are heading in the right direction.