Glowing Performance

Some of our friends from church (thanks Linda and Terry ) have been faithful to send Kagan cards and pray for him during this journey along with many others.   This week however the card he got from the Smith's really touched me. 

You're facing a GIANT - mean, ugly and unfair.

It looks impossible-

but looks are deciving.

God is on your side and he doesn't just stand by

& cheer you on - he rushes into battle

TO FIGHT FOR YOU! 

This week has been very odd. My son goes off to school, I pick him up to get him radiation treatment, he bounces in and out and then back to school so that he does not get behind in his honors classes.  He just does it....he never (okay rarely never) complains and almost every single day he touches someone new.   This can only be with the power of God fighting that he just does not get down.

Have you ever raised a teen?

They get moody because the sky is the wrong color of blue or because their best friend did not like their comment on facebook or because their boy/girlfriend did not snub someone they hate or because they did not have time to straighten their hair, or because ..... the list goes on and on.

The ONLY reason that Kagan is making it thru unlike many with a positive attitude is because of EXACTLY what that card said.  GOD has rushed in and is fighting for him. It is NOT easy for him and at times is very frustrating but he puts smile on his face, respects his doctors, thinks about others and focuses on everyone else because this is NOT just his fight!   He has God right in his corner.  He has prayer warriors in our family and friends daily (many times a day) lifting him up to the throne of grace.  That is HOW.

Now, this brings to me the WHY?

Kaleb and I have been talking a lot about this.  I wanted to bring this to you, those who read my blog:

Do you think that God might be using Kagan's fight to help you remember to hug your little ones a little more at night?  

Maybe you thought to go to the doctor for that test to check up on something that was not quite right (this happened to me)? 

Could it be possible that there is something just not in focus in your life and when you have heard Kagan's story you were tempted to sort it out?   Call a loved one that you don't talk to...Forgive a friend that hurt you...Focus your attention to a worthy cause....  ( I mean if he was facing the possibility of death at 15 do you really have enough time to get everything sorted out the you want to before you are faced with that possibility...or reality?)

Maybe he is using Kagan to tug at your heart that you have never surrendered to Christ and that you know that just being a good person is not enough but you aren't sure what to do?

If you love my son, which so many of you do, please know how much it would mean to our family to know that our son's journey is not in vain.  God is teaching us so much during this journey and we hope that you can learn from the outside before this (or something else) shows up in your life as BOMB that forces change.  

Kagan's glowing performance of letting GOD radiate thru him is surely as important as the radiation going in.

He has been marked, tattooed and scarred during the fight but one way or the other the battle will be WON!  EVEN if Kagan went to heaven, he would not have lost.   He made that decision many years as a young boy and every day grows stronger in his faith to know his victory is in GOD alone. (No, I don't think that will happen but it is a possibility we had to face -- a whole other blog). 

It is a thought no mom wants to have, no dad wants to consider....we would be devastated.  We would be heart broken, we would be shattered.... but the battle would still be WON!  

In our heart of hearts, we believe he will get better and live a strong healthy life full of many successes and use this story.  At that the battle with cancer will be WON too in the way we pray for!  We look forward to watching his grow into the man who has built so much character and grace before he even turned 16. 

He has inspired us to be a stronger family and redirect us.   It is unfortunate the path to get here but how blessed we are that we get to battle with the mighty strength of a GOD who makes it look like we know we are doing!

I pray this peace for you and your family too as it is the only way to know a calm during a storm.

Coded Messages

This afternoon, right before 5, I got a call from the doctor's office confirming Kagan's appointment  for his first radiation treatment for Tuesday.  After we confirmed the appointment, the lady on the other end asked me if this time would work for all his appointments because the doctor had let her know that I was doing my best to work around Kagan's school schedule.   (So sweet that she took the time to remember this request that we had made.)  I answered her by saying that since it was only 8 treatments, we were willing to be as flexible as we needed to be.

Her next words were:

Well, no we should find a time that works because there is a possibility that you will need more appointments and that is why the doctor wants to come early Tuesday to talk to her about the treatment plan.

LONG PAUSE. MENTAL OVERLOAD.  DON'T FREAK OUT MODE. Silence.....

I said "Oh, okay.  Well, I know that you cannot tell me anything for certain (I am learning that nurses can't tell you anything without the doctor having told you first.); but are you telling me that we may have more treatments?

I can't tell you anything for certain until you talk to the doctor but I would say that you should plan accordingly as to be able to do more treatments.

 I answered with the pleasantries of thanking her for her time and reaffirming that we would be there on time to see the doctor.

I look up to Kagan who was sitting at the bar across from me with his head dropped down.  He shook his head slightly with a look that I have came all to familiar with.  The look of WHAT NOW?   He asked me about the conversation and I repeated back the specifics to him. (Ha....I mean the non-specifics that I knew!)  

Now, we wait.....

I am not a big fan of coded messages.   

I know that by now they have worked out their plans,  they have reviewed the newest CT scan done last week and went over Kagan's medical charts more in depth and it appear something has changed.  I just hate that now I have the weekend to come up with my version of what they are going to say.    Yet, there is nothing that can be done but WAIT!

Radiation Casting

Today was the second time back to the Radiation clinic to prepare for the radiation treatments that Kagan is about to begin.  Everyone was so sweet, kind and gentle today and once again put me at ease with their care for my son.

Kagan was asked to change into a gown and then we were shown the procedures that will follow during the next few weeks.  An induction, if you will, to yet another part of the behind the scene cancer world. 

We signed papers and were given lots of literature to read to learn more about what the radiation will do, how it works and so forth.  (I have now read it twice and have my list of questions ready to go!)

Next, the nurse took us into the room where Kagan laid on a CT scan table.   They used a foamy pillow material underneath him to position him on the table.  Once they had him set, they took a compressor and took out the air in the foam beneath him leaving a cast of his exact position.   This will allow them to position him in the same place for each treatment to be as accurate as possible.

Next, they found Kagan's center of gravity and marked him with x's and lines all over his side and chest.   The nurse told us today that if we did not object they intend to tattoo him at the next appointment to keep a permanent mark.  (Sounding a little fishy with all this center of gravity stuff, isn't it?)  Lastly, they took photos of him from both sides and over top to provide a visual record of his position and newly given marks.

We were surprised that they followed his casting with another CT scan.   My mom said today that they can see him from Texas glowing! (ha)   I believe this about his 15th CT scan since May.  That is an awful lot of scanning going on.   The hospital surely knows him inside and out by now.

We then went back to our newly assigned parking spot with a promise that we will hear back from the doctors within 5 business days to give us our schedule of treatments.   We anticipate starting later this week or first part of next week!

Next Stop:  Remission 

Bull Riding

On Saturday, the Children's Cancer Center arranged for Kagan to go the Professional Bull Riding event as a VIP.   Our entire family was treated to a great evening out and a behind the scenes tour and meeting the bull riders up close and personal.  Since we were given bright orange t-shirts to wear we were not easily missed and everyone was really kind to us the entire evening.

We toured the arena, the locker rooms, the bull pens, the loading docks and went into the chutes.   When we got to the bulls we got to see them get a little rowdy in the pen and I for one was thankful that we were not getting on them. 

I later reflected that the bull riding was a great example of what this journey has been for our family.  The bull riders were mostly pretty young cowboys who were beaten up, bruised and scarred for life.  They chose to continue to get up on those bulls each week to win the title knowing full well what MIGHT happen if things did not go according to plan --- they even prepare for it.  They do however have the rewards of MILLIONS of dollars that they have made doing it.  One guy had made 4 million in two years!  

Just like those bull riders- Kagan has been scarred for life with surgery scars, has temporary bruises (and that cute bald head) from shots, IV's and PICC lines, and yet he still has to keep going to win the title of SURVIVOR even though the treatments and test can do as much harm along the way.  (Gotta love that Texas boy heart!)

The evening began with the 2004 PBR champ praying with us.  I simply stated that is why you have to love a cowboy!   Later I found out he was from Texas and then smiled thinking - there really is nothing like a Texas cowboy!  Mike Lee, whom we cheered for all night, quickly came up to us and introduced himself.  He had a true sense of care and concern for this group and it showed. 

I also enjoyed the reminders of home.   Several businesses from my hometown, Prieferts and Big Tex, were sponsors of the event and were mentioned every where we turned.  Funny it would do that; but it did.The good part was though that I was surrounded by my world - Kaleb and the kids - so even the few moments of being homesick were taken over knowing that they are my home. 

Random Thoughts....

The other day in the car, Kagan was driving us somewhere.  As were approaching the stop sign he said casually, " I think it was a good thing that I got cancer mom because if not you would have not had surgery and taken care of yourself". 

My heart sank, my tears leaked and well...... I smiled.

As much as it pained me to say it, yes, Kagan getting cancer has brought about good things for our family. 

I felt guilty.  I felt ashamed.  Why did my son have to get sick for me to realize so many important things?

I also felt relieved that it was a CHANCE too now make those changes.  A chance to make positive changes that when and if we ever face another challenge we will have grown from this and Kagan's illness would not have gone in vain.  (Do you hear the after school special music tune playing in your head now? HA)

So here are my random thoughts.....

1.  I love to have a clean house.   I HATE (I mean like really hate) to clean but I sure do love the smell of Pine-sol, chemicals and candles.    Since his release of the hospital I challenged myself to get our house organized and clean in a way that I have not done in years.  There is even a schedule.

2.  I love calendars.  (Not a big surprise!)   The control of a paper calendar gives me a feeling of control that may or may not be true - but that is how I feel.

3.  I missed cooking for my family.  I still hate grocery shopping but I love to have a hot cooked meal on the table for them when they come home.  I am starting to plan meals and COUPON again so I can at least make it a game to get me to the grocery store.

4.  My kids' have some awesome friends.  I forget how important friends are to teens.  Yet, when I think back to those days I cannot imagine my life without some of the friends who were very important me (and some who I wish I had never met but that is another story!)   I want to invest in their  friendships because I can see how important friends are more now that ever.

5.  I adore my husband.  I cherish all that he has given me from the days of "split ends" to now.   He gives me butterflies knowing that he will always take care of me anyway he can.  I will take our love story over any other!

6.  I have let people take advantage of me and my time.  I thought I had learned my lesson but NOPE it followed me into adulthood.  It is sad that you only see it when you need them to be there and they abandon you.  In their heart you know they must think it but you wonder how an adult could do this.

7.  My kids can see right thru me.   Scary.

8.  I forgot how much I love to read.  I have devoured book after book in the past few months and I am mad that some of the series that I have read are over.  Seriously, don't authors know that just stopping a series cannot be tolerated!

9.  If I ever run away from my life I want to run away to Kaleb's Aunt Kathy's house.   Their entire commune of people crack me up!   I think that they could have their own reality show over there :0)

10.   There will never be anyone in the world who makes me feel as safe as my Daddy.  My mom is the person who I lean on the most and whom I love but when my Daddy says something there is just something so matter-a-fact about it that I know it is going to be okay.  

11.   I love picking up my kids from school.  You learn all kids of things in the car line!

12.  I can have anything I want to have if I want it bad enough.  The problem now is making sure that what I want is what I need.

13.  I love to pay bills on a monthly basis.   I get tickled to get a bill that has a negative balance on it because I paid it before it was mailed out.   (Truly, this gives me such a grin like I made them waste almost 50 cents to tell me I don't owe them anything)

14.  The thing I want most in the world (material wise) is a chair that is my mind that I cannot find.  I have said this before but I can't find the perfect chair.

15.  Taking care of myself is crucial to take care of my family.  Lesson learned.   Changes are coming....

So, yes Kagan having cancer SUCKS!  It is not fair to him at all; but I will make sure that it a point where change occurs for good.

Lastly, I have learned that God is so faithful.  I am comforted in a way that I have never been before because I know that God has a plan.   It is NOT random that God chose Kagan and that is a thought that makes me smile.  

What is on the horizon?

I want to be faithful to this blog but sometimes I get a little forgetful and don't post.   About the time I remember I need to post something I start getting emails asking me if Kagan is okay from people around the world who are praying for Kagan and are following his blog.

In the world I am living in right now radio silence can mean bad things.   You can see a bubbly young little girl one day and find out the next that she is now hospitalized and not expected to make it thru the night.  

Luckily, my lack of post has been just the business of life this past few weeks.

During the last post, Kagan was having his PET and CAT scans to see if the cancer was gone.  Unfortunately, the results of those test did not come back as positive as we had hoped.  The chemo had been successful to shrink the cancer but for some reason the cancer was not gone and it had now invaded the thyroid.   It is still small amounts of cancer (about 1/4 of what he started with) that are present but it can grow so quickly and for me ANY cancer is TOO MUCH CANCER. 

So, we have to be more aggressive and Kagan has to fight this thing a little longer. 

Last Friday, Kagan had his neck operated on again!   This is the forth procedure on that ugly culprit but I am happy to say that is GONE!   No more bumpy on the side of the neck.  There is a scar several inches long that reaches around the entire left side of his neck but I will take that over that stupid culprit poking out any day!   Dr. Grissoni, as always, took really good care of Kagan.

We did find out that he will have some permanent nerve damage from the surgery.  After he has healed though we are once again blessed to find that this meant a little numbness in his neck area but nothing serious. 

Now, we start the road of radiation.  

Dr. Calkins is her name and I really am confident in her.  She made me like her even more when we showed up for our appointment yesterday and she had a broken arm.  On the sling was a picture of her dog and and little index card that pointed to her dog saying "It is his fault".  So cute.)

She said that both she and Dr. Panchoosing (as you know I really value his opinion and care of Kagan too) had several meetings go over Kagan's prognosis and need for radiation.   After several conversations, they both felt confident that radiation would be a good next step.

Dr. Calkins explained to both Kagan and I why they are trying to stop doing radiation on children.  She also explained in detail (and I mean a lot of scary details) the side effects of radiation.   She about had me in a panic and then she said "But, for Kagan he will only have to have 8 treatments".  Since I had prepared myself for 6 months of radiation, I am beyond happy to hear this news.  She also eased Kagan's mind by saying that since he is 16 and on such a short time that he should not have any of those side effects.   She shared with us that Kagan will not feel any pain, that he will not get sick that the chemo would due, his immune system will not be depleted and that he will be able maintain normalcy to his life.

So much was talked about, including his future responsibilities to keep care of his health, that I felt comforted once again that we had a doctor who was willing to talk in terms of Kagan's well being and not just the "treatment" at hand.  

Next week, they will due scans and make a cast for Kagan so that all treatments are done in the exact area each time.  Then we will start radiation.  

We are still believing and trusting that God has a plan!  No doubt about it!  

Results.....

As most of my family and friends know, Kagan had his PET and CAT scan test this past week.   In between those test we also had other doctor's appointments to round out our week.

While waiting for the PET scan Kagan got comfy with his music and got in a little rest.  I snapped a photo of him during his little nap.   He is still the cutest and most precious boy (even though he is 16!)

He doesn't read the blog often so it will be a little bit before I get a "Oh mom, why did you put that up?"   :)

I had to notify the kids, the grandparents and etc. before I could give everyone an update on Kagan's test results.  Sorry I did not return calls but it was a a whirlwind of events and since I am still medicated, I ended up in a nap myself for a few hours.

Kagan did not reach remission.  The cancer is still shrinking but he still has active tumor and it has spread into the thyroid.  The thyroid is a new place so we will have to watch it to see what is happening there in the next few months.

For now, this is what we know.

Next week he will be having surgery to remove the culprit completely.  Dr. Grizzoni's office will call us on Monday to schedule which day it will be.   It will then take two-three days for the biopsy results of that entire removed lymph node section to be available for review.  We will then see the oncologist to get the results next week.

The following week, we will go to the radiation oncologist to get the treatment plan for the radiation.  It is my understanding we will be focusing just on the affected areas to limit the amount of radiation he has to have.   It will be 5 days a weeks for months. 

In about 4 months (depending on radiation cycles) he will do another check of the areas with another PET scan.   In the meantime, his regular oncologist will be seeing him to check his blood work and all that to make sure that things are going smoothly.

He also is going to have to go to a doctor for suspicious freckle/mole on his belly.  His regular doctor and the oncologist both say it is very suspecious and since skin cancer is a common second cancer to the treatment Kagan has they will be taking a very close look to map his skin and determine if any areas need to be treated now. 

The area is in the lung is still noted but no change in size or metabolic activity.  They will continue to wait to deal with anything on the lung at this time and hope it is just a scarred nodule.  We will watch it closely however.

So, we continue to ask for your prayers.  Kagan really has taken this all with such a good attitude and I so wanted him to get the results he wanted today.  Unfortunately since this did not happen we are going to once again lay it in God's hands knowing there is a reason for this and cure in the future.

On the upside, the doctor gave him the green light to go ahead and go to Rock the Universe tonight.  It is at Universal Studios with our youth group.  It is a nice treat before the next parts of this process start.  I am glad he gets to go and have some fun because there is not a kid that deserves it more (says his mom :0) )

We will keep everyone updated as we move forward.