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.

School Time

Today Kagan, Kade and Kenadee started back to school.  Kagan in the 10th, Kade the 9th, and Kenadaee the 7th.   It is so hard to believe how quickly they grow up and move on. 

We had a decision to help Kagan do homebound school, virtual school or regular school.   We decided that we would opt for regular school until we wait to see what comes next.  Obviously, he will have some more stuff to go through but the school has assured me that they will work with us around this. 

I thought it was best for Kagan to begin to get some normalcy into life.  

He will officially have all his test re-ran on September 4th.   It will be such a relief to see what is happening and to be able to make plans.  Until then,I will be patient.

Support Systems

This week I got some literature from the SuperSibs! program that really got me to thinking. 

SuperSibs is a program that offers literature and support to the siblings of kids with cancer.  Obviously, as most people know, the whole family is impacted by dealing with any illness that causes all the attention to be focused in one direction.   Rightfully so, the child dealing with the illness needs extra attention, parent's time at the hospital and resources from the family.  It is a great program and I can see where cases that are more severe than our families it must be a lifeline for those children.

We struggled to keep Kade and Kenadee's lives as normal as possible during Kagan's journey.  The day he went to the hospital I decided that everything was going to remain the same for them and I am so glad that I did.  It took much effort from Kaleb, our family and friends to keep things going but everyone offered to pitch in and help.    Luckily we were able to manage most of it on our own but the outpouring of love towards the kids and offers to help with them gave us a peace of mind.

So that brings me to what I was reading in the SuperSibs! packet.  The literature reminded me how lucky I am that Kade and Kenadee are who they are too.  These two kiddos helped me out so much with picking up extra chores at home, taking more turns with walking dogs, making phone calls for me and then the one part that was even harder - they relayed the news of their brother to Kagan's friends, teachers, church friends, cousins, etc.   I thank them both for the never ending support of their brother and for taking on that burden that this blog was suppose to alleviate for them somewhat.

I read this packet of information right before Thursday and Friday's open houses.   We had teachers, students and school officials all come up and offer support and their concern for our family.  Kenadee's culinary class teacher last year made meals for our family this summer and has offered concern for Kenadee on several occassions.  (Thank you very much Mr. Artz and Culinary Club!).     I realized at this point that as they go back to school all three kids have a burden of answers to carry back with them.

I appreciate people who invested time with Kade and Kenadee.   They both have some very good friends with great parents who will never know how much their stepping up with my kids have meant to me.

Simply, put I know that I have talked about how the support of my parents (who again I will tell you are just the most awesome people in the world) and Kaleb's mom (who is such a blessing to all of us), our friends and Kagan's support group of friends.  I just know that I have yet to thank all those who stood up to be there for Kade and Kenadee and it felt like time.

Thank you God for support systems that make us stronger than we are!   

Birthday Boy!

I type...

I erase...

I type again.

Today is a day that I am full of emotions that I am attempting to put into words.   We celebrated Kagan's 16 birthday today and my heart is overflowing with words and emotions but my mind can't seem to make a coherent statement on this page.

Turning 16 is a milestone in everyone's life. I remember turning 16 like it was yesterday. It is when you know that adulthood is right around the corner because it is the next big milestone ahead.   This caused a few tears for me today but also a few big smiles thinking about all that Kagan has ahead of him.

We discovered today the interesting facts of things that happened on August 15th!  The start of Woodstock, the discovery that there was a solar system other than ours, the release of the Crisco by Proctor and Gamble and the dentist chair.    Yet, I know that on August 15th that the birth of Kagan Ray Moss was a blessing beyond all discoveries of that day.

We did not get Kagan a car.  It was a very (VERY) hard decision not to.  There are several reasons why we didn't but mainly it would have been irresponsible of us to go into any debt when the future still holds a lot of unknowns.   (This is me being very reasonable and mature and I hate it.) The only comfort is that he will not actually have a driver's licenses for another month and for the foreseeable future he will not be out driving without me anyways. 

So it is something he can look forward to in the future.

These little things are the hardest part for me.  Was getting Kagan car really that important?  No, it was not.  It is lavish and not a necessary at this point.  It is just one of those things that cancer stopped and I get really angry when those things come up.  

I also was tearful that when we woke up that stupid culprit decided to grow from a jelly bean back into a large shooter marble!   There is some other areas that seem to be swelling on the neck but we will hold our breath and wait until tomorrow to see what is up with that when go to the doctor.

So for Kagan's birthday here are my 16 thoughts for you.

1.  Kagan, I wish that the rest of your life from 16 forward is lived with the knowledge that life is precious. Unwrap the gift of each day full of expectation of joy, laughter and contentment.

2.  Always know that YOU are worthy for EVERYTHING that your heart desires.  I know this is true because your heart is pure and good and therefore all things that you heart is set on is within your reach.

3.  Begin each day with prayer and end each day with prayer.  Surrender the day to what God will bring and then each night thank Him for what He did. 

4.  Know that true love is never created.  It is found and then nurtured to blossom into what it will be.

5.  Never be afraid to fight for what is right.   You will feel it in the depths of yourself and when you know it right you will never regret the bruises or pain it brings.

6.  Aspire to be anything you want.   Don't put a boundary on your dreams for your future for it is yours to live.

7.  Don't ever live in fear!   If you can be afraid of it then you can also conquer it.

8.  Build bonds with your brother and sister every day because there will be one day when they will be the only ones who can understand exactly where you have come from.

9.  Fill your life full of people but make sure that your most in depth thoughts and personal life are shared only with a few precious ones. 

10.   It is your story to tell but you get to tell it when you are ready.  No a second more or less.  Never feel ashamed to say when is the right time.

11.  Know that cancer may have stolen this summer but Chemo gifted you being able to have many more.

12.  For every negative you have make sure that you think of five positives. 

13.  SMILE! 

14.  Dig into God's word.  Listen to wise teachers, us, pastors but know that God has written the word for YOU and there are treasures within the pages that only you can find.  It is not a text book.  It is God's love letter to you.

15.  Give people a chance to know the real you.  You might be surprised who they turn out to be when you give them an opportunity to show their real selves to you.

16.  You are loved and cherished.  I am sorry for the times I am wrong or when I don't know what to do.  I am sorry when you deserve more than I can be.  Yet, I can promise you that everyday in the past and each day in the future I will continue to strive to be the best mom you can have.  When you need me, I will be there.     For today I have to be your mom but I can't wait for the days to be your friend too!   

Jelly Bean

"The Culprit" is getting down to the size of a jelly bean!  It is still changing sizes and the infection is still hanging on there but we are praying that it is just infection and no cancer.   I hate that little thing so much!     Now that Kagan is finished with the antibiotic we will watch it the next few days to see how it reacts without the medicine being taken each day.

On the light side cancer jokes are quite the common thing in our house these days.  It is odd how you begin to laugh at things that you can't otherwise change.  I am sure that it will warp my children (and me) but the laughter is worth it these days. 

We have decided that Kagan is going to do his very best to begin back to school next week.  This decision has been made with a heavy heart and also with lots of emotions.  I know that it will be good for him but it is getting harder each day that it becomes closer.   If it does not work, we have a Plan B and Plan C already in place.

Today was a hard day.  I just had a lot of emotions that I had not dealt with.  I was thankful for Kaleb to come to my rescue.  He just showed up and rescued me from a day of gloom and doom.  Thank you, my love!

Mission: Chemo Complete

The last few days I have not published my post because I have decided that the post written while in the hospital and first night home are pretty much too raw and make me sound like more of  a lunatic than I want to be.   I will maybe post them someday for those who follow my blog because they too have a loved one that is going thru what Kagan is. For them, they will find it normal but for others maybe not.


Emotions at this time are running very high.   Basically though we are getting to the point where Kagan is going to get busy living the life that he fought so valiantly to live.   


The next few weeks will be hard, I will not lie.   I spent most of yesterday trying to put my thoughts around what is next and how to sort out the next steps.   Oddly, the chemo treatments had become the normal and after this week we leave the comfort of that "road map" that told us what comes next.  After Thursdays chemo - the next parts are unknown! 


What we know is yet to come is  - more testings, more appointments, more testings and then in about a month ANSWERS!



As the days have passed, I will tell you that our parents have made such a big difference in our journey.  I don't think I will ever get to old to need my parents with me.  Thank you Momma and Daddy from the bottom of my heart for being where I could land to get strength to to hold up my family.  You both will NEVER know how much I love you both for everything you have done.  Thank you to my mother-in-law (Jeanne) for pretty much rearranging her whole life to be where I needed her to be when I needed her to be.   I am very fortunate to have a mother-in-law who loves my kids so much and  who I can always depend on.  I love you very much! Thank you to Kaleb's dad for reaching out at the right time and sharing your concern.  It meant more than you will ever know.  Thank you all for loving your grandson so much and giving him love!

Last Longterm Hospital Admission

This is the LAST long term hospital admission for Kagan under this protocol.  In our prayers, it is the last forever!  It seems just like yesterday was May 23rd and it was our first admission. I can't even begin to tell you how the emotions have changed from that date to this date. 

From day 1 to now has been:

77 days
2 months and 16 days
110,880 minutes
6,652,800 seconds

.... and I can assure that for the first time in my life each of those seconds have been counted and I have been thankful to God for allowing me to live them!

Kagan had his THIRD PICC line inserted today.  It went in so smoothly and without any complications.   As usual there was the bedside X-RAY to check it's placement.    He wasn't even phased as the process of a PICC insertion is kinda just the normal routine of what has happened at each admission.

We were in ROOM 106 when we first got admitted today.  That room was THE ROOM where we first sat anxiously learning the process.  It was kinda eerie going back there.  For some reason the nurses asked us if we wanted to move to one of the larger rooms so we did.   It was kinda nice to walk out of ROOM 106 in a different manner than the tearful and scared process that happened last time. 

Today there was also some reassurance from the doctor that had been giving us a really hard time.  I think she finally realized what I was concerned with and today for the first time she acted TOTALLY different.  I feel better now that the neck thing being treated and the PICC line being fixed that she realized there were problems and hopefully will listen to us better in the future.

Kagan was also asked to participate in a ceremony at the hospital for the Pediatric cancer patients.  The grant from Hyundai was $75,000 to the St. Joseph's to support children's care AFTER they are in remission.  To better help support children as they grow into adulthood to be able to better coordinate their care for any future issues and to have access to their records for coordinating with other physicians.  They had a car that is traveling around the country and on it the kids place their handprints.   The story can be read here:  Hope on Wheels.

Kagan's handprint is the red one to the right of the logo on the car.   Isn't that the cutest handprint ever?  I can't tell you how many lives he has touched and how his print on life has blessed me more than my words can say!

 Now we sit here at 10:29 waiting for the urine test to come back to okay Kagan to begin chemo.  It has been a long stay but hoping we get to the start the chemo before too long.   Tonight is the rough night because he has to take many chemo medicines that last over 6 hours.  Yet, the good thing is that he will likely sleep (as much as possible) during the chemo and therefore not be quite as difficult unless he get sick.  Nurse just walked in and said it went UP (which is the wrong way) so we are going to try and get Kagan to drink a picture of water to help!   (I am sure that he will love that I shared this whole part of the story)

I am hoping THE CULPRIT is beat the rest of the way down this chemo. It is still about the size of a shooter marble but I am praying that it will just go away after this chemo treatment.    It would be such a mental relief to see it gone.

I got some really sweet emails from people this week that have kids with cancer that have been reading my blog.  They sit where I did months ago and told me that knowing our story has made it easier.   There is no two cancer stories alike but there is one hope that is universal - HOPE!  I am thankful Kagan lets me share his journey for just this purpose.
  
 We will keep everyone updated as we move forward to CHEMO GRAD day! 

Sleep Over

So there is little news over the weekend.  All I do know is that the plan is to take out the drain from Kagan's neck on Sunday. 

The preliminary cultures for organisms and fungus came back negative but the other cultures have yet to come back.   Therefore, no news is good news type thing.  For now Kagan is on IV antibiotics every 6 hours.  

Still no news as to when the chemo will start.  It could be that we stay here and go straight into chemo later next week or they could send us home for a week after this stay ends and then start chemo. Who knows?

Kagan is feeling well.  Such a different kind of stay than when he gets chemo.  

Kenadee spent the night last night.   She said that it wasn't really hard to sleep here because she slept just fine.  That girl could sleep thru a freight train.

This morning she snuggled up in the bed with her big brother to watch some tv together. 

I feel so lucky to have such amazing kiddos.   Kade will be here to sleepover tonight. Kagan really enjoys having them with him.

FRANKENSTEIN

Well, the culprit has a new nickname - Frakenstein! 

(Yucky,  I know but it is interesting to a teenage boy?)

So as soon as he came out of surgery I said, "It looks like Frankenstein".    He did not laugh, but seriously look:

Today's outcome was that there was tons of puss in the there.  The surgeons both said that it really needed to be done and they are so glad that we got it done because it poured out.  It is now out for pathology to see exactly what we are dealing with!

The doctor said Kagan will likely be on the IV antibiotics for a week and we may be in the hospital for the entire IV cycle unless it responds very well and can then be given as a pill.  It just depends on how the body fights here.   Then the same game plan is to start chemo afterwards.

The really good news was the surgeon did NOT see any new tumor via his visual of the area during the surgery.  That is absolutely the best of news to me.   Doctor warned me still aren't 100% sure but not near the alarm that we had yesterday.  He told me today he was actually very worried that the cancer had spread rapidly in that area.

So our plan of yesterday is a little altered but again Kagan did great.  NO PAIN MEDICINE at all after surgery!   The nursed keep telling him he has morphine ordered but he is like "No, I am fine"!

This morning  Nurse G (now named Nurse Vampire) got the IV working this morning after a number of sticks but they replaced it again during surgery.  When he come out we saw that they had poked him several times under sedation and now it is sitting very oddly on the side of his wrist.  He does not like the position but again - no complaint.

Every day God just amazes me when the beginning of the day we see a mountain to climb and by the end of the day we are resting at the peak!  If you are going to be on a roller coaster ride might as well be on the amazing ride that God designed because there is never a point where the dips and curves don't leave you with a awe inspiring feeling of what a great ride life can be.

When Kagan got back on the floor all the nurses welcomed him back.  One of the absolute sweetest and FUNNIEST nurses Mrs. Desa was giving him sugars because she said he might not let her do it once he was awake.  Such a sweet and caring nurse who makes this journey just a little easier.

So, for the rest of the night we are just watching a little tv and then hoping to get some sleep early.

Thank you God for each sweet dream and answered prayer! 

Round 4 - TIME OUT!

We checked into the doctor's office today fully expecting to be admitted to the hospital for chemotherapy today.   It is our normal admission date so we were packed and ready for the stay.

This last week Kagan has dealt with the healing of chemo sores in his mouth, a broke PICC line,  a low blood count and being a little more sleepy.  Then a two days ago he started saying that his neck was sore, like maybe he had slept on it wrong.

I began checking the culprit CONSTANTLY and noticed it was getting larger and puffier.  When I would touch it I could feel fever in it but Kagan was not running any fever.  Obviously, the doctor's knew we were coming in on Wednesday so we were to have it checked that day.  When we were on our way, I noticed that the culprit had a white dot (looked like a pimple) in the center of it with even more red around it.  It is about double the size then when the doctor last measured it a week ago.

 So, we were already put on hold for chemo until the new PFT test could be done on Kagan's lungs.  If he does not pass the test and there is an issue there could be a change in the chemo drugs because it means they are having and adverse action on his lungs and ability to breathe. 

Then as soon as Dr. Panchoosingh looked at Kagan's neck he immediately began to take action.  He said upon looking at it that there was no way this thing was staying in Kagan past this weekend!  (Kagan not so happy but I am so glad to see this thing being aggressively beat down!)

Let me introduce you to the two doctors that I just adore for all their attention to Kagan and the absolute extraordinary care that they are giving them.   I will be getting a photo with Kagan and them soon but I just pulled off their photos from their pages so that my Mom and Dad can put a face to the names of who I keep talking about.  

THESE MEN ARE REAL HEROES TO  ME!

Within the next hour we were admitted to the hospital, IV inserted, antibiotics being given, had an X-Ray and ultrasound!   The surgeon and the two nurse practitioners were in to consult and to make a plan.   They immediately scheduled Kagan for surgery tomorrow morning.  


Our understanding is that they will put in a drain to get rid of the infection while also doing a biopsy to get some more tissue to send the pathologist.  In a few days, Kagan will undergo another surgery to completely remove this area of lymph nodes once the report comes back so that they know exactly what they are dealing with here.  (All subject to change :-))


As far as chemo the tentative plan is to get a PICC line back in after the infection goes away followed by chemo started. We are just praying that the timing does not require that Kagan be on Chemo during his birthday in just two weeks.  It is the BIG 16!

We also learned today that there appears to be a manufactorer issue with the lot of Kagan's PICC line.  They have been pulled from the hospital and they found his and sent it back to the manufactorer to see what happened with it.  Great to know that we knew something wasn't right and for the amazing IV team for being on top of it.  (Thanks to Stephanie, Wendy and Mani)

To pass the time I did allow him to sneak off in the wheel chair while waiting for the x-ray.  Not sure it was allowed but hey the kid needed some fun for the day!   

Even after the rough start to the day he had several friends (Janine, Abby and Sean) come to spend the afternoon/evening with him.  Sure it made passing the time go by a little bit and not be so borrowed.  Kaleb, Kade and Kenadee came up after Kaleb got off work. 

Kaleb is off tomorrow so that he can be here for Kagan's procedures and hear what the doctors are saying.  I am so very thankful for his company, bosses and their process to allow him to be a dad when it is important. 

All and all, we have a busy day ahead of us tomorrow.  We appreciate all the prayers that are being said for a safe surgery. 

Testing Results - Update

I am not sure how all cancer treatments go but I know that Kagan's cycles of 21 days is a fairly quick turnaround.  The way it was explained to me is that he receives very high doses of chemo in a short time to get an aggressive treatment on the lymph nodes. I guess this is why we seem like we are always at the doctor.  It is a week of chemo, a week of checks to prepare for chemo and a week of test to see how everything worked.    Fills up a calendar quick.

We had the echocardiogram and EKG.  We don't have any results back from those test but the tech certainly did not give us any indication to worry.

We had an audiogram today because one of the drugs can cause hearing problems.  The test was a little more high tech than that of the doctor's office with the beeping in the ear and holding up your hand.  He was taken to a sound booth where he was given several type of test.  Then the doctor left the room and did a more technical version of the beeping test was preformed.

When the test was over the doctor asked me how much Kagan used his ipod and ear buds.  I said "EVERYDAY".  She followed up with saying that she is so surprised because his hearing was beyond excellent!   She said most teens have damaged their hearing by his age and his was off the charts great!   (We caught a break!!)  She was very nice and explained everything to us about what to do to protect Kagan's hearing.  We will see her again in a few months for follow up to check and make sure no changes due to the chemo drugs.

Interesting fact:  The doctor said that if you stand with your hand out to your side and rest on a persons shoulder next to you that you should not be able to hear their music from their ear buds.   Kade, this means YOU!!!

We then went to the busiest office in Tampa, I think. The Pulmonary doctor's office was absolutely crazy.  I guess a lot of kids deal with issues with asthma and other breathing/lung issues but I would have never thought so many would have been at the doctor's office.

Kagan had to take a few test in the breathing chamber to test his lung volume, the exchange of gases and so forth. We really liked the doctor and his office staff today.  He went over everything with us.  Kagan's test shows some reduction in his ability to exchange gasses when he exhales.  The doctor is going to follow up with having his retake the test at the hospital this week to ensure that it is just not a variance between their equipment and that of the hospital.

On the prescription for the test he gave orders for the nurses to call him immediately once the test was completed so that he can come and go over the results with us while we are at the hospital.   LOVE THAT ATTENTION TO NOT LETTING ME WORRY!   He said once he had it we can talk about what else needs to be done to ensure that we do what we need to.

The doctor also reviewed my binder and the previous CAT and PET scans to look at the nodule on his lung.  He said that we would keep an eye on and determine if a biopsy of the lung is needed.  He did not want to send him for this test until chemo was over and wants to make sure that there is no cancer present there, if possible. 

Then Kagan and I enjoyed a lunch together in between appointments.  It was a nice time to talk to him.  He is getting really weary of talking about cancer, going back to school and all that is cancer related. I mean he is upbeat about it but he is just tired of everything being about cancer.  I totally get it; but at the same time he knows we have to talk about it.

The next big talk is going to be about if he can go back to school or not when school resumes.  Such a precious time in his life that I hate to see him miss out on 10th grade.   We will be using all the resources available to us to make the right decision when the time comes.

Kade is still doing football everyday.  He is really loving it.   Two-A-Days are suppose to start August 6th.  Today they got their football equipment and he is ready to hit the field in pads next week.  Then the following week is already time to go pick up his freshman schedule.  Crazy that summer is almost here.  Kade is not gonna know what to do when his social life gets cut into with school and he has to wake up at 6:15 a.m.

Kenadee is done with all her camps and just spending time at the gym and cheer practice.  Her back handspring tuck is great!  I am so proud of her.  She is working really hard to get ready for her busy cheerleading schedule that is up and coming.  They have choreography in a few weeks and them will keep practicing three days a week!   She is really ready to go back to school.  She will be in Junior High without any of her brothers this year as a 7th grader.

Daily Dose

The best thing about life is change.  The worse thing about life is change.  Ironic, huh?    I guess it just depends on the acceptance of the change that makes it a good or bad thing.   


For us, we are learning to be even more accepting of change than we were.  We are accepting that we can't control some things but with change we can at least alter how we feel about it.


Today we went to the hospital for a battery of test to be done to check on Kagan's progression and to check to see if while the chemo is treating the cancer that it is not causing any of the long list of side effects that can be almost as brutal as the chemo.   


The hospital was soooo busy today with news crews, parties, arts and crafts and etc. for the Christmas in July toy drive.  It was so heart warming to see how many people that go out of their way to give to children so that they can bless children during the year.   We even got to see Santa (even though Kagan refused to go "meet" him).  


After we got thru with the test that were scheduled in the children's hospital we went to the medical arts building to finish up.  After some scrambling they determined that they had rescheduled those test for Monday!   

Monday is already full of a battery of test at some doctor's office who are seeing Kagan so now we have the juggle in these test back at the hospital as well.  

Normally, I get frustrated by things like this but today I was just like "Okay, I will see you Monday!" I think this is a good sign that I am adjusting to last minute changes.  

We got home and then it was time to flush the PICC line.  The dang thing did not work again!  I hate this particular PICC line.   Luckily, Kagna was able to bend his arm and put his hand on the top of his head to make a L shape of his arm and it worked just fine.   Not optimal but it worked and that is a good thing.  I had to call the clinic and they told me some things to be on the look out for but did not have us come in quite yet.  Just praying that it will be okay until Monday.   

He is still struggling with all the sores in his mouth. It looks painful and is still giving him a hard time talking, eating and swallowing.  Poor thing, I think this has been the most uncomfortable thing he has to go thru.  

Yet, the stinker sent me photos of his mouth along with an article about mouth cancer.  Is he trying to give me a heart attack?   Funny thing is that his humor about it is still there and I am learning to accept that this is his way of dealing with it.  Can you say BIG CHANGE?  




This week we have also learned that I have gall stones, kidney stones, an ulcer, an infection in my stomach and few other minor ailments.  Fun stuff.  So much of what is going one with me is pinpointed to have a lot to do with STRESS!  Maybe learning to roll with the punches and accept change will help me get better.  I will be seeing the doctors and talking about surgery after Kagan's next round of chemo.   Who would have thought in the middle of all this, I would be having all this going on at the same time?  

Thank you so much to all who have been praying and keeping up with our family.  We most certainly feel your warm thoughts in our heart and could not be more comforted.   

Sick Day

Well, today we had to go to the doctor for a dressing change on the PICC line.  Yet, this time we also had to have our first "sick visit".  

Kagan has sores all along the inside of his mouth along his tongue on each side.  This is making it quite difficult for him to talk and/or eat.  Dr. Rossbauch said it was definately a sign of being neutropenic.  Luckily, they did give him a prescription for some medicine that will help him get rid of the hurting in a few days.  

We did Kagan's CBC and his ANC was at 126 which is the lowest his counts have ever been.  We are going to do some GCSF shots to increase his counts so that he can qualify for chemo next Wednesday.

He did come home and laid down to take a nap.  It is nice to see him getting some rest since I know he has to be completely wore out from today.  

Dreams

I keep having dreams about the day that we found out that Kagan had cancer.  It is like a never ending series of events that seems to play in my head over and over again.  During hours that I am awake it less vivid and revolves around the rush of the day but during the night it is all about 15 minutes of time that covers hours of my slumber.

We had already been to the peditrician many times, had ultrasounds, blood test and x-rays determining what Kagan was going through.  Then the peditrician scheduled us with an appointment with the ENT doctor. 

When we arrived at the doctor's office we waited for a little over a hour before we got to go to see the doctor.  Since our doctor had called to squeeze us into this appointment that day we were just worked into the schedule. The office was quite large and included a play room with an on staff "babysitter" to play with the children during the wait. Kagan and I just sat and chatted and watched the Disney channel together as we were tired from all the running around that had happened earlier in the day since we had been to a few other offices in the early part of the day.

The doctor was named Peter Orbello.   He entered the room wearing one of those head mirrors that you see on the Bugs Bunny cartoons.  Since we had not spent much time at the ENT's we were not quite accustomed to what I know learn is very common in the standard equipment for such a doctor.

The doctor checked Kagan over and said that what was going on was not normal.  He sat back down at the little desk area beside the chair I was sitting on.   He opened the file and noticed they had just received the faxes from the peditrician's office with the results of the earlier xrays and ultrasound.  On the reports read "POSSIBLE LYMPHOMA".  He rollled his chair a few inches towards me and said "Have you seen this?"  I said "No, I have not."  He said " We need to get you to see an oncologist today give me a few minutes to go and make a few calls.".

He left the room and I remember looking up at Kagan's face and seeing the worry on his face.  I stood up to go over to him to talk to him and the doctor ushered in a nurse and said that we needed to go see Dr. Rossbauch leaving me no time to speak with Kagan but I was able to put my arm around him.

Now at this point is where my fifteen minutes of terror comes in during my dreams.

As we were being checked out on a late Friday afternoon, several nurses came out whispering about what was happening with Kagan.   Then one nurse said " Dr. Orbello got him into the oncologist today and they are headed there now.".

I stood with Kagan at the counter of the doctor's office waiting on the referral slip holding Kagan's hand.  No one had told him what was going on at this point.  He had just heard that we needed to go to an oncologist and everything in my being was praying he had no idea what type of doctor that was.  I wanted to tell him BEFORE he knew.

As we stood there for what seemed hours (actually only 2-3 minutes), two nurses came over and patted me on the back and said "It is gonna be okay mom".  Yet, their fear for me was evident and I held my high and tried to hold back any emotion.

Tears began to roll down both mine and Kagan's eyes.  No words said, just me there holding my son's hand and attempting to be strong.  THIS MOMENT haunts my drams!

Another nurse handed us some kleenex ( a whole box to be exact) as now 5-6 people stood there and watched us.  Just like the spectators or looky lous at an accident they stayed back a few feet but we could still hear the faint chatter of their voices.

We left the doctor's office and I started to explain what I THOUGHT was going on without causing fear to Kagan.   I mean, afterall, I really did not know what but in my heart I knew this was not going to be good.   Strangely enough, he knew too!

Before we heard the words aloud they screamed within my heart.  I knew at that moment my son had cancer and I was not prepared for what we were about to learn.  I was also not prepared for what reactions that Kagan might have.

Each night the dream seems to challenge myself to relive this moment. I have heard you can't have the same dream twice but who ever says that is clueless because somehow this dream happens over and over. 

We are very fortunate that Kagan's prognosis is such a good one.  I am speechless as to how well he has taken this whole thing.   It is even a blessing that August 8th will be the milestone that we are waiting on to see what happens next.  Just a few months ago that seemed like forever  and now it is less than a month away.


The lessons learned are that even though the thoughts still invade my sleep the reality is that Kagan is doing better each day.  That in itself affords new dreams and I will be happy to dream them soon.

Just Because

Kagan and I 

This is now but so much has happened in between.  No matter how old he gets or how tall he grows - he will always be my baby boy!  

Round 3, Day 8 - Chemo Day

Kagan went for Chemo again today.   Luckily, one of the doctors that I really love was the doctor that was seeing Kagan today.   He checked Kagan over and his blood counts were 6660 today!     Since they only have to be over 500 for chemo he was qualified.

We did have another ultrasound to check the PICC line.  All looked much better today!  

"The Culprit" got remeasured again today.  It keeps changing sizes.  It is smaller but now it has grown again since the last measurement in it's length and shrunk on it's width.   Dr. Rossbauch said we will just keep an eye on it and later determine if surgery is needed.  Basically they will use the PET and CAT scan results that Kagan will have in August to make that call.


We got home and Kagan is doing well today. 

This month has just been crazy as far as doctors have been concerned with our family.  I mean the doctor appointments that Kagan has had has been almost daily between chemo, labs, test, dressing changes and etc.   Then on top of it this past 30 days we have had:

- Kade to the doctor to get his football physical.
- Kenadee to the urgent care for being sick and suspected strep throat.  (Luckily negative)
- Kaleb to dentist to get wisdom teeth pulled.
- Annual eye exams for the whole family.
- Kaleb to urgent care for being sick and we must make sure that it isn't anything Kagan can catch. (It wasn't)
- Kenadee to peditrician to get 7th grade shots.
- Me having some issues and had to go the doctor yesterday.  The result was a whole bunch of lab test ordered plus a cat scan being done on Thursday.   No idea what the follow up will be until I hear of results from Doctor in a few days. 
- All three kids going to dentist for their annual exam this week.

I bet our insurance company is loving this. 

So, really hoping that once we get thru August we eat an orchard of apples and keep the doctors away! 

Above and beyond!

This morning as I was cleaning the house and getting ready for the day to start my cell phone rang.  I almost missed the call but with a giant leap and some pretty impressive acrobats for this old body, I grabbed it just in time.  On the other end of the phone was the IV team nurse that has been so wonderful to Kagan.

She was calling to follow up on Kagan's PICC line because she just did not feel right about the way that we were dismissed and that there were no test done on Kagan's line.  We talked for a long while and went over everything about the events.   Then she empowered by saying what so many have been saying "It is your child and you should never for one second not feel comfortable to make sure that he is okay...Period!"  I needed that.

Since she was just not my support system of friends and family but actually one of the individuals in the mix of things she KNEW I felt justified to feel the way that I did.  She even felt that way for Kagan herself.

I made a call to the doctor to let them know that he was having pain in his under arm area and that it was still very tender.  The same doctor that said no immediately ordered us to get some test done to see what was going on.   To her defense she did tell me today that she did not realize that I was worried about his dismissal the other day and that if I felt that strongly I should have been more vocal.  ( I don't believe her but I will give her credit for saying that and I WILL take her up on it from here on out!)

We had an ultrasound and the technician was really great.  She had to call someone else into the room to look at what was going on because they could not see a blood clot but there was most definitely a problem with the blood flow.   They had places where it was problematic but by manipulating the arm they could get the flow to work.   Not idea but also not fatal! 

The compression of the veins from the wrist to the chest area was fine and I learned that when there is a clot that there is nothing they can do to even make it compress.  (Sigh of relief for one less thing to worry about!)

All afternoon I just could not help but think about the kindheartedness and tenderness showed by the nursing staff in general.  Then to top it off, we have a nurse that calls us at home to make sure we are okay and to calm my fears!   What a top notch and amazing example of what a caregiver should be.

I learned an important lesson today!   There are times in life when you can just silently feel someones pain and then there are times when you can share in the pain and offer your expertise, opinion and/or view.  You may never know how much your 2 cents are worth to the person on the receiving in. 

Today, Wendy's 2 cents were worth millions to this mom!  

All and all, we think that everything is going to be fine and we know what to watch out for now.  We also saw that the blood flow problem is a reason for the constricted blood return and likely the cause of most of it.  I will be able to see the written radiologist report tomorrow to see his view of the situation since today all the doctor had was his verbal  stat report. 

Tonight will be a better nights sleep!  

When you disagree with doctor?

For some reason this last hospital trip just wore me out.   Mainly the beeping of Kagan's IV pump going off every 15 minutes because of the PICC line kept me up most of the night the last night.  I keep closing my eyes and hearing that beeping sound in my head even at home.  So today, I napped over half the day and finally am feeling at little more refreshed.

I am having a real issue with one of Kagan's doctors.  I just don't trust her at all.  I am sure she is a fine doctor but her style of caring for Kagan compared to the other doctors is so different.  To me she seems cold and distant.  When I ask questions she makes me feel like a kid in kindergarten asking questions about physics.

Our group of oncology doctors has three doctors.  I feel very comfortable, confident and that Kagan is in good hands with two of them.  I mean when they tell me something I feel like they are doing what is best for him.   When she says something I just feel like she is just going down a list with no real attention to the particulars of Kagan's case.

I have heard some patients say they really like her; but on doctor rating cites she is the only one of three who does not have a "five star rating" (or whatever the highest is in on any particular website).  I can't see she has done anything wrong but I don't hear words of anything that she has done right.

I am really struggling because I don't want to deal with her any longer.  I am just wondering can you ask that a doctor in a group not see your child?  Am I going to become that mother, the one who made waves?

Again, I am sure that she is a fine doctor but she does not make me feel fine.   I don't want to go as far as to complain that she has done anything wrong but when we left the hospital I was as mad as firecracker at her.   If the same circumstances would have been with the other doctors I would have trusted them but her, I was mad.   I don't think I should feel this way towards the person caring for my son.

Basically, Kagan has had some trouble with this new PICC line flushing and giving blood return.  Since it is a new PICC line this should not be happening.  Several of the nurses were baffled by it's fickleness.  We already done the TPA (same medicine they give to stroke patients) for the blood clot.  He got cleared of that because the line started to work but something keeps happening and we are not sure what.   When the nurse went to discharge us she unhooked Kagan from the fluids he was getting.  When she went to flush the line and hepornize it, there was once again the block and no flush would flow thru.   I asked the nurse if I could try to do it so I would know what she was talking about for when I do it at home.  When I pushed it, it would not move. Then I pushed it again and it gave a little bit and Kagan yelled "Ouch".  I about died! He said "That Hurt".  The nurse and I both asked him where and he said as he motioned to the area of his heart, "Here". Heart beats a zillon times a second in mom's heart at this point. 

The nurse immediately went and got another nurse.   They called the IV team to come look.  Upon looking they did get the flush to go through but still suggested something wasn't right.  They called the doctor to get an approval (at the IV team's suggestion) for  an x-ray and test of the clotting of the blood.   When they called the doctor said "NO, just let them go home".   Really?  Are you kidding me?

Her reason was to not keep us in the hospital an extra day if it was nothing.   My reason is keep him the hospital an extra day to confirm it is nothing.   The nurses did as ordered and tried to calm my fears by saying it would be okay and what to do if something went wrong.  They backed up the doctor but I could see their faces like "um, okay this will be okay".

Earlier in the day the surgeon and her had disagreed on the need for the aspiration of "the culprit".  Her reason was just wait and see and his was we are going to see for sure and not take any chances.  I took the surgeon's advice.  I think she got her panties in a wad.

So, after my nap and really thinking about it I am trying to decide what to do.  I did flush Kagan's line and it was A-okay.   So, she is right at this exact point but I hate the feeling of being worried when she could have taken this worry away from me with an xray to confirm that the PICC line was right where it needed to be.  The nurses weren't sure, the IV nurse (who placed the line) wasn't sure but I am glad she could so easily make that call OVER THE PHONE!

Let's just say I hope she is right in her call.  If not, well....   

I can tell you again that I have been so impressed with the doctors that we have and the amazing nurses staff that we have. They have been absolutely AMAZING!   I hate this feeling of just complete un-trust and unsettling feeling but I feel like this is my job to be protective.   Even with the the excellent staff I cannot tell you how many times I have had to correct the doctors or nurses on the medicines that Kagan is on, be the one to the provide the test results or whatever to make sure that they know what is going on with Kagan. At times, I know more than they do with what is particular to Kagan all while knowing they know a zillion times more than I about what to do with the information that I have.

On a positive note, the doctors are saying things are looking really good.  We have a whole battery of test lined up for next few weeks.   As long as things go well, we will be doing everything outpatient with some more chemo this week in the clinic and then readmitted back to the hospital on August 1st.

"Because I said so"

I don't care who you are there has been a time in your life where someones answer to you on WHY was "Because I said so".  It was rarely a good enough explanation BUT because of the authority of that person (usually parental) you have no choice but just to do what they said.   You don't really like it but hopefully you are because ultimately trust the person who said those words.

Today was one of the hardest "because I said so's" that I have ever uttered in my life.  It was done with a heavy heart but none the less it was what I thought was best.   I turned out to be partially right and partially wrong. 

The doctors had different views when they talked to me.  It was partly no one was right and no one was wrong but ultimately it was up to me to decide WHAT was needed to be done.   The decision was on rather they would aspirate/biopsy "The Culprit".   The ultimate decision was yes.

The same surgeon that did the original biopsy  did the procedure bedside today.  He is such a kind hearted doctor.  He came in, sat down and talked with us about the procedure.  Before leaving he gave both Kagan and I a hug.  I love doctors like this that know the value of hug is almost as good as anything medically that they can do.

Even though Kagan really likes the doctor he was not really wanting to do the procedure.  He was willing to take a more "wait and see"approach and I wanted to take a more active approach to rule out anything bad.  He trusted me to let us go ahead but it was really under the "because I said so" rule more than his decision.   I HATED this. 

I know Kagan trust me and he is so sweet about it in many ways however I know the teenager in him wants to do it his way.

The IV team came and looked at the PICC.  The TPA treatment worked and there was nothing else that needed to be done with the blood clot.  We will watch over the next few days and the dressing and so forth will be changed on Wednesday of next week.

Kagan is now sleeping from the morphine that they gave him and his chemo started at 5pm this evening.  Once this bag of chemo is done then we get to call this hospital stays procedures done. 

Round 3 caused Kagan to get hit with a few left hooks but ultimately Kagan was the winner of this round.