.....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

NF and What Ifs

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.....

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

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.....

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

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?.......

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.