Monday, July 30, 2012

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.

Friday, July 27, 2012

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.   

Wednesday, July 25, 2012

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.  


Sunday, July 22, 2012

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.

Thursday, July 19, 2012

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!  


Wednesday, July 18, 2012

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! 

Monday, July 16, 2012

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!  


Saturday, July 14, 2012

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.








Friday, July 13, 2012

"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. 




Round 3, Day 3

Last night Kagan did his second round of chemo.  This night always makes him feel a little more yucky.  He did good through out the night but is back to sleeping this morning.  Between the toll the chemo takes and the drugs he is typically wiped out all day after these rounds.

The nurse could not get blood return from the PICC line this morning.  She did some test and they are administering medicine for a blood clot.  This is not unusual with a line such as this but we had been fortunate to not have to deal with this so far.   They have closed off the PICC line and marked it as unusable for the meantime.  

We are not sure if the medicine will work.  The nurse said that if it did not work then they would have to pull the PICC and place into the other arm.   Praying this will not happen! 

We have a consult with the surgeon today to do an assessment on "the culprit" on Kagan's neck.   They did all the needed test yesterday and the doctor had a chance to review the scans and test results from last week.   At some point he will come in to talk to us about what he thinks should be done.

So now we are unsure of if we have to stay longer in the hospital than expected due to the clot.  Obviously the chemo can not be administered today until this is resolved.  Then we have the unknown determination of what the surgeon is going to say and what will happen.

Our normal doctor should be in some time to talk to us this morning too.  However last time we were in on a Friday it was closer to 3 in the afternoon before we saw the doctor so who knows! 




Wednesday, July 11, 2012

Round Three - Day 1

Well, here we are.  Back in the hospital and ready for Round 3!  

Can I tell you how much I love St. Joseph's Children's Hospital?  Seriously, I am so impressed with the love, compassion and concern that the nurses, staff and all give to us when we are here.  As soon as we approach they know Kagan by name.  They remember what he likes, his stories, things about our family and etc.  It is not the kind of stuff that is charted in records but carried in the hearts of the great people who we are lucky to have caring for Kagan.

They make it possible to feel comfortable and at peace even while at the hospital.  That is a tall order.

I did get the test results back.  I think that I have now translated them to english from the medical jargon they are written in.  I feel confident that the chemo is working.  The doctors verbal is minimal at this point but all looking good. 

There is still the question of the mass in the lung, the continued presence of "the culprit" on the neck and some abnormal findings in the colon.  They will compare these to the next test before making any conclusive suggestions regarding these. No alarms but concerns.

We started back with the same treatment and holding off on radiation until after next round before making any decisions on that.  Obviously this is a change to what we were expecting so we will continue to be patient and allow the chemo to work and see where we are.  We at least have a plan for the next 21 days.  (Until the change it that is!)

Kagan did have to get the PICC line re-inserted today but only with one lumen this time.  Let's hope no more!   I LOVE the IV team nurse that has done the PICC line insertion.  Her name is Wendy and she is fantastic.  Both she and the other IV team nurse Stephanie (love her too) were both here today to get the process started and we could not have been in better hands.  

She had to make two incisions today.  She let me snap this photo during the procedure for Kagan.  She even posed and made monster sounds.  You can tell she is pedi-nurse!  

All sterile and using the ultrasound to find the catheter and making sure that it is working well.  

I went to down the cafeteria to get some lunch and they had some big smiley face cookies.  I brought one for Kagan and it was almost the size of his head.   I hope this few days flies by for him and leaves some smiley faces for him without a cookie.
 


We will keep you posted as time goes on and let you know how he is doing.  For now, fluids started and we hope to begin chemo between 6pm-8pm tonight.  We will see how it works out but if I was a betting person I would say that it was going to be after shift change this evening. 


Tuesday, July 10, 2012

Prayers Working!

The last few days, I have been discouraged about the progress of Kagan's chemo.  The doctors, the nurses, the technicians all talk in circles at times and it is hard to determine if they are speculating, encouraging or just being random.   I still knew things would be okay but their cloudy responses sometimes gave me fear as to what was to come.

Today, I got a chance to talk to Dr. Panchoosingh about the results of Kagan's test.  It was a quick conversation that  pretty much  just let me know that the cancer had not spread and that the chemo was working!    It was a pretty quick conversation and there was not too much detail but to hear his voice and his confidence that things are going as planned was great news.  Hearing that the cancer had not spread beyond the places it already was an answer to prayers.

It is funny because Dr. Panchoosigh has become one of my favorite doctors ever.  He is pretty much shoot from the hip and sugar coats nothing.   So, when his initial review of things today was positive I was elated. 

We are to be admitted back to the hospital tomorrow for more chemo.  This time it is with more anticipation and more hope of what is to come.  We also will get a chance to talk to the doctors in more detail, get a copy of the reports from the test and so forth in order to fill in the blanks with the answers to the many questions that have swirled in our minds for the past few days. 

I am 100% convinced that things were not going well last week and then God stepped in and showed his mercy due to the many prayers that are being lifted in Kagan's name and here we are today!  Thank you so much for all that have prayed!

Today, Kagan had to go and take his finals that he missed at the end of the year.  I just sat in a chair and worked on some thank you notes and so forth that I had neglected getting done.   He said the test were pretty easy.  He is officially now done with his 9th grade year!  YEAH!

Sitting there listening to the rhetoric about the staff, the few other students that were about the campus and SMELL reminded me that I do not miss high school at all.  Everything has a season and that one has come and gone for me!



As Kagan was taking his test I was sitting in the background and snapped this shot.  Some kids would have just accepted that they had already passed but Kagan was determined to take his test to protect the GPA that he had worked on all year long!  

Thanks again to all those who have prayed.  All the kind words and all the encouragement!   It has made the difference more than words can say.  Lots of love to all!




Sunday, July 8, 2012

Crossroads


Just a few months ago it seemed that our family had it together!

We were beginning to see the glimpses of the life that we had always worked towards.  Our kids were happy, our marriage was strong, our faith was unyielding and professionally Kaleb and I both were flourishing.  We were getting closer and closer to making some giant leaps within our family.  


The daily talk in our home was about the future of Kaleb's new venture, travels abroad and within the US, cheerleading, football, school, colleges and cars!   Our late night conversations were about dreams and desires for the future and rarely about the day to day of life.


Things Change....

The daily talk is no longer about the same things. The planning is more about the present rather than the desires of our dreams.  The reality of the daily to-do's and priorities become the focus point of what time Kaleb and I have together. Unfortunately, our kids are even forced to be a part of this "reality" even though Kaleb and I try to not have them be.

Things Get Worse....

I am not certain if I am ready to share some of what is heavy on my heart.  Actually, I am quite assured that my feelings on some things aren't even known by me now.  There are some hurts that are so deep that I am not even ready to begin to do anything more than bandage the wound. 

Things Get Better...

There are some amazing people that have we have been blessed to be encouraged by and loved by that I am not sure that we would ever known if it were not for this journey. 

There are feelings that I have towards Kaleb that I never had in the same way.  He has become the only other person in the world who can feel exactly what I feel.  His hurts are my hurts.  My heart is even more a haven for his pains and his for mine. 


Whatever Happens....

I am not sure where we go from here.   Even once Kagan beats this thing there are changes that have been made from choices made.  There are differences that will always exist from this point forward.  Many changes will be positive for us and there are some that will ultimately be negative.    It is just the juggling of what is worthy and what is not.

I feel like I have come to a crossroads.   From this point, I have known a knew reality.  Life can't just happen from this point.    We must live intentionally and full of heart.     It is certainly a change for the better at such a high cost to learn.






Saturday, July 7, 2012

Psalm 25

I was reading one of my favorite blogs today and came across a challenge to memorize scripture that when I read it pretty much brought me to tears.  It was the perfect scripture that I needed for this week. 

The blog I was reading was Beth Moore's blog.   She is my all time favorite bible study teacher and she brings so much enrichment to my walk.  The blog post was  here:  http://blog.lproof.org/2012/07/big-sisters-and-little-sisters.html

The challenge was to memorize Psalm 25.   

Psalm 25[a]

Of David.

In you, Lord my God,
    I put my trust.
I trust in you;
    do not let me be put to shame,
    nor let my enemies triumph over me.
No one who hopes in you
    will ever be put to shame,
but shame will come on those
    who are treacherous without cause.
Show me your ways, Lord,
    teach me your paths.
Guide me in your truth and teach me,
    for you are God my Savior,
    and my hope is in you all day long.
Remember, Lord, your great mercy and love,
    for they are from of old.
Do not remember the sins of my youth
    and my rebellious ways;
according to your love remember me,
    for you, Lord, are good.
Good and upright is the Lord;
    therefore he instructs sinners in his ways.
He guides the humble in what is right
    and teaches them his way.
10 All the ways of the Lord are loving and faithful
    toward those who keep the demands of his covenant.
11 For the sake of your name, Lord,
    forgive my iniquity, though it is great.
12 Who, then, are those who fear the Lord?
    He will instruct them in the ways they should choose.[b]
13 They will spend their days in prosperity,
    and their descendants will inherit the land.
14 The Lord confides in those who fear him;
    he makes his covenant known to them.
15 My eyes are ever on the Lord,
    for only he will release my feet from the snare.
16 Turn to me and be gracious to me,
    for I am lonely and afflicted.
17 Relieve the troubles of my heart
    and free me from my anguish.
18 Look on my affliction and my distress
    and take away all my sins.
19 See how numerous are my enemies
    and how fiercely they hate me!
20 Guard my life and rescue me;
    do not let me be put to shame,
    for I take refuge in you.
21 May integrity and uprightness protect me,
    because my hope, Lord,[c] is in you.
22 Deliver Israel, O God,
    from all their troubles!

This is for those that stumble upon my page because they are dealing with the mothering of a child that is dealing with cancer.  Can't think of a better part of scripture to speak to the heart of how we feel.   

I will cling to these words as God's promise to be my HOPE!

Kenadee's Home!

Kenadee had a really good time at Lake Aurora.  She did tell me that I am never again to send her to Hillside again and that from now on it's Lakeside cabins for her.  So funny how much the kids seem to love those 50 plus year cabins over the cabins that have been built in the last few years.  I think they just feel more like "camp"!

My sweet girl did come home with this little raspy voice and complaining of her throat hurting.  So, after a call to the doctors involved, we had to get her to the After Hours pediatrician to get her checked out because Kagan's counts are going down each day before his next chemo treatment.

Let me just say that this was NOT a fun experience.  Whether it was because Kenadee was so tired from camp or not feeling well she did not do well with the whole strep throat swabbing of the throat.   After I told her that she had to get it done because Kagan had to know I felt a little bad.  I mean, it was to make sure she was okay but at the same time it was to make sure Kagan was okay.   The nurses (yep a few of them) had to do a little extra TLC with her to even get the test done.  Let's hope we never have to do that again.

I did not want to compare to her to Kagan.  I mean he has all kinds of things going on and is taking them as such a champ.  But there was my little girl crying and so sad that my heart melted (and my patience - :-). 

This morning she and I were talking and it was just a big reminder of how different all three of my kiddos are.  I don't want any of them to live in the other child's shadow or have to do things just because the other did it this way or that way.  I want to personalize my love for them, my care for them, my expectations of them each individually.  It is just sometimes hard.

Today Kenadee has felt a little better in her throat.  I think camp just about did her in and she really needed some rest.   Brownie (our cockers paniel) was happy to get to just cuddle up with her as she napped this afternoon.  (Her little mask is just as cute as can be!)







Friday, July 6, 2012

Unexpected Twist

The plan yesterday was to have Kagan's PICC line changed when he went into the hospital next week for his next round of chemo drugs.  A plan that lasted for about 12 hours before being changed.

Today, we were running a little late to our appointment because Kaleb got up and made me homemade french toast (my favorite) before we left for the hospital.  I took time to enjoy his efforts for being so sweet so we were not right on time.

As soon as walked out of the parking garage I heard a " We have been looking for you!" came across the parking lot.   It was one of the sweetest oncology nurses, Sabine, walking towards us.  Her next words were that they had decided to remove Kagan's PICC line TODAY!   Kagan was like "No, that is not today".  She gently placed her arm around him and said that yes it was going to have to be today because they needed it removed before the PET scan.   He did resist a few times but she smiled gently towards him with her arm around his shoulder and begin to tell him all the great things about having it out for a weekend.  She is PRO!

Well, sure enough, as she escorted him into a room in the clinic things started hopping pretty fast. We were the only ones there today as the clinic only sees emergency and irregular scheduled appointments on Fridays so it was pretty laid back.

The ladies rushed to get him and get his IV inserted for the procedure.   The nurse in the office today,  AKA "G", came in and did a little vein searching.  She swabbed for quite sometime and then said she was going to give the IV one try.   1...2...3  - It was IN!   This is not normal as typically the nurses have a really hard time getting an IV started for Kagan because his veins are small and deep.



It was 11:01 and our PET Scan was scheduled for 11:00.   We rushed out of the clinic and made our way around the hospital to the Medical Arts building for the outpatient procedure to be done.  We begin to get registered to find out that our PET had been moved to 1:00 !  Erg...  I was suppose to leave the hospital to go get Kenadee at camp so now I was in a pickle.

Fortunately, a lady from our church was already at Lake Aurora and I was able to call her and get her to pick up Kenadee with the other kids she was bringing back today.  Whew... something went right but Kagan was disappointed not to get to take the drive out to Lake Aurora. Thanks Christine!

 So, we had to go back to the clinic now to get the  PICC line removed. 

That is what the PICC line looks like.   It was extremely long as they pulled it out.   Good news was that there was no clotting at the end or any signs of infection at the tips.

Then he gets a fancy new bandage filled with stuff to help prevent infection over the next few days.




Off back to the PET scan at the other end of the hospital just about three hours late.    It takes a little over 2 hours to get the PET scan completed.   With all the information, waiting for the radio active materials to get into the system and get the scan it is very boring.  Then Kagan has to sit in this position for about 45 minutes completely still and without talking.


We also were not able to get any results today as the nurse said they would read the CAT and the PET and other test all together.  This would allow them to give us an accurate report.  They said they would see us next week and if there is anything urgent the doctor will call us.  Now we wait.....

Thursday, July 5, 2012

The Dark Side

I know that I have been telling everyone how wonderful Kagan is doing and it is true.  He is really doing well and keeping a good attitude about almost everything except maybe IV's, PICC lines and drinking contrast.  Those things he is not my sweet baby but his evil twin. 

Today, when they changed the dressing on Kagan's PICC line the IV nurse said that she thought that it was looking a little infected and really wanted to change it.  She opted to do it during his next hospital stay that is coming up next week.   He was NOT happy.  I mean he is the kid who declared that he would just keep this PICC line in for the remainder of his life as to never have to have one put in again.

He was/is not scared of the pain, that part didn't really bother him.  What bothered him was the fact that the line is right on (in) his heart.   He just said he doesn't trust someone that much to have that much control over his heart.  (Words that a mom LOVES to hear that her son is protecting his heart!)   I kidded him saying that I was pretty sure that was not what God meant in Proverbs. 

Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life.
Photo Credit - Cancer Help UK

Then we come to the whole IV issue.  We were told that Kagan could continue to have everything done in his PICC line.  Well apparently "everything" does not mean certain scans that require dye or radio active materials.  Therefore, he was suppose to have an IV inserted for his CAT scans and the PET Scan.  Joy, Joy....

That brings me to the contrast.   Let me just say that I might begin to use this stuff as punishment in the future because he hated it that much.  I am sure that he will never leave a chore undone again if the result is to drink the contrast.

The jolly nurse came out to the waiting room and presented Kagan with TWO bottle of contrast that he needed to drink within a fairly short time frame.  It was "vanilla shake flavor".  I will let the pictures speak for themselves.








Today we did get back his blood test and his counts have skyrocketed again.  We have taken a break on the shots that boost his immune system until next week.  He was happy about that part of today's events.

I was encouraged today in that there was nothing that seemed overly alarming.   The nurse said if there was anything urgent that the doctor would call us this afternoon.  I can't tell you how relieved I am that no calls came.

All and all, it is just a roller coaster of trying to anticipate what the doctors are going to say or do.   Attempting to prepare myself for the worst and the best.  It is odd because sometimes the "do nothing" is almost as scary as what the doing something is in the event of things being wrong.    



Wednesday, July 4, 2012

Dreams Really Do Come True.

When this all started happening with Kagan,  the social worker came into our room with a packet of papers for us to fill out and told Kagan about the fact that his diagnosis qualified him for a dream of his very own.   She said that they would be contacting us to set up an interview for him to see what kind of dream he would want.

As Kagan processed this information on that first day his first response was that he wanted to donate his dream to our church to upgrade the sound equipment or something that would help the church.   He asked both our Senior minister and our Youth minister what he could do with his dream to help out.  
 
He gets a dream and his first response is to give it away?  


I cried my eyes out several times as he offered up this "dream" because it was something he could give.  I cried because I saw his generosity.  I cried because he counted himself as not worthy to have such an extravagent wish from someone.  I also cried because I saw that he was more willing to give than to receive. I cried because I am not sure that my first response would have been the same.

Well, the dream fund told him that they could not "give away" his dream and encouraged him to really think about what he would like.  Would he like to meet a celebrity?  Would he live to travel?  Would he want to go on a shopping spree?  What ever his dream was, within reason, they were there to help make that a  possibility. 

This week, Kagan had his interview with a very sweet lady named Kim who talked to Kagan about what he wanted.  They narrowed down somethings and started the process of determining what kind of dream was right for Kagan.  We will keep you updated as his dream comes true.

That conversation has stuck with me the rest of this week.

You see, Kagan didn't really have big dream that he wanted just right off the bat.  He really had to think about it.  He had to listen to her talk about what other kids had done, what options there were and then he asked for more time to think about it.    He was not quick to answer and to ask for something without fully thinking it out for the future as much as for the present.  Well, unless it was a car and then he would have been golden.


It got me thinking of things like:

- Do I really have a big dream that someone could fulfill?
- Is it an injustice for myself in not having lofty enough dreams?
- Am I content because it easy or because I am satisfied?
- Who would have ever thought that having a dream granted would be at such a big cost?
- What dreams do my children have that I can help them prepare for achieving?
-  What are my husband's dreams that I can help make come true?

“If you can dream it, you can do it. Always remember that this whole thing was started with a dream and a mouse.” Walt Disney
 I want to dream big enough to allow my husband and kids to have every dream  of theirs come true.  That would be my dream. Now I must get busy making that happen.

Monday, July 2, 2012

Being Prepared for the "What If's"

I spent about 5 years as a cub scout leader and cubmaster for my boy's Cub Scout group.  It was a lot of fun but I am thinking I did not take the "Be Prepared" motto serious enough when it comes to what to do if your kids get sick.

Kagan has cancer but I know that many other families have situations where their children or grandchildren have been hospitalized for other illness and diseases.  We just got that scary "C word"; but I know that other people have walked in our shoes for other reasons.   Yet, no one really ever told me how to get prepared for your kid getting sick.  I assume they just don't want to think about it or wish it on someone so it is just a Taboo subject of sorts. 

In all that we are doing, we are taking a fast track course of becoming prepared and learning the ropes of what needs to be done to stay on top of everything. So I thought that I would share with you a few things that we have learned in this process that might help someone in the same situation to be prepared before you need it. 

Hospital Bag

I love my husband but he is not a packer under pressure when it comes to hospital bags!  When we went to the hospital I never left and had to rely on him to pack me a bag and bring it to me.   I got 5 night gowns (never wore a night gown in hospital one day) and then some clothes that I had not worn in almost two years.  He then just opened random drawers and pulled out anything that he thought that Kagan and I would need.  Let's just leave it at he did not need to bring me the kitchen sink but it might have been put into that bag.

I have seen this packing skill once before when I left work late on the way to a ladies retreat and Kaleb had to pack me a bag and bring it to me at the office so that I would not be late.  Well, I had a few gowns then to for an over night stay and no clothes.  Luckily on that trip I got to go on a mini-shopping spree.

That is when I decided to make Kaleb a packing list of things to bring me when/if we ever went to the hospital again without advanced notice.  I have even sectioned off a place in my close where he could just pull from "approved outfits" that would work during a hospital stay.

This will take some stress off of him and allow me to walk down the hospital corridor with some dignity of sorts!   I am pretty sure non-patients walking around in a gown (even without the hiney showing) is not favored! 

The list looks something like this:

x pairs of comfortable pants
x t-shirts
1 pair flip flops
socks (hospital rooms get cold)
1 sleeping pant/shirt
x pairs of panties
Jacket (it really gets cold)
small blanket
Make-Up Bag  ( I have it packed all the time)
Toiletry Bag (packed with smaller sizes of shampoo, soaps, deodarant, etc. - I will be sprucing up this bag for a on the go bag that stays always packed).
Personal items - like paper, pen, bible, computer, etc. 

Common sense stuff but things you just don't think of once you are rushing to a hospital.

Tape the list to the back of your closet door and anyone can pack a bag for you, if needed.

Fun Things

If you are going to be in the hospital for awhile there is definately the need for some things for boredom breakers.  Card games, yahtzee dice and score pad, 10,000 dice, skip-bo,etc

At our hospital you can also bring your PS3 or game station.  One of our friends, Justin, brought Kagan his during his first hospital stay.  I would say it was the best thing Kagan could have had brought to him. I would have just never known you could  so it is nice to know you can.

You can bring ANYTHING that makes you feel comfortable for your kids.  If they want it, they can likely have it and the nursing staff will go out of their way to help you get it done if needed. 

I just wish I knew this the first time so that I was not so reluctant to ask the nurses.

I got a very cute Thirty-One utility bag from my friend Heather that has been perfect for loading up with these "fun things" to make the hospital stay a little more bearable on the next trips.

MEDICAL BOOK

I wish that someone would have encouraged me to keep my kids medical records in a binder.  I mean I kept everything when they were infants and toddlers but then it just kinda gets away from you.  I will forever keep everything in once place from now on. 

It is surprising how much information is needed that can be answered from these records. 

DON'T FORGET TO ASK FOR EVERY RECORD!!!

Medical Binder

I never knew you could get a copy of every single record the hospital, doctor or etc. has on your kids.  As soon as CAT scan is completed, tell them you want a copy of the radiologist report.    If your kid has blood test, get a copy of the results.  You can get a pathology final report, test report, doctor's report, etc.  All written and the very words that the next doctor or nurse is going to look at when they see your child.

We have already corrected and found mistakes that had I not had my book with me we would have not been able to tell the doctor.  

Our book was given to us at the hospital called a Hope Binder.  It was great because it was already set up with things related to Kagan's situation but I am making one for Kade and Kenadee.  I prayer I NEVER need them with regards to an urgent situation but if I do, I have everything right there.



This binder also has pages of business card holders. Everyone you meet with gives you a business card. A nice place for when you are calling them, need address for insurance companies, etc. 




Lastly, ours is broken down into tabs. Nice way to organize and you can add more when/if you need it.

AFLAC

If you don't have it, get it.  Anyone can get it and it does not have to be something your employer offers.  By far the best proactive decision I made.

This is one of those you can't do later things but if you have before hand it will be a great help.

http://www.aflac.com/


SCRIPTURE

Find a scripture and hold on to dear life for God's promise to you!  It amazes me how no matter how many times that you have read the bible when you are in a situation a new scripture pops onto your heart with a new meaning.  It is God's whisper into the storm that gives you a life boat to carry yourself thru the storm with.

 DON'T MAKE ANY DECISIONS RIGHT AWAY


There are so many things coming your way that you are having to decide.  If it is something that has to be dealt with that can wait (unlike medical decisions) then wait.  I found that several things I made quick decisions on were things that I might have changed if I had waited a little time to react.

I am sure there are many other things that I could say but these are just a few things that really have been so important to me that I wanted to share.  A little bit of preparedness now might go a long way later.