Monday, February 18, 2013

The final entry - February 18th, 2005

This is the last one I'll share -

Finally we were told:  it was cancer.  Our surgeon stopped by this afternoon to tell us that news.  He said we should expect to see the oncologist that evening, or over the weekend, and we could start planning treatment.  Cancer is something you never ever think your child will get.  Isn't it just for old people or smokers?  Not your everyday average four year old.  We had a lot of decisions to make.  We had been told by so many people that St. Jude Children's Research Hospital was the best place to go.  We were told by our local hospital that they could do anything St. Jude could do.  What we were never told was what that was exactly.  The oncologist never came to see us and tell us what our options were.  We waited and waited.  We mentioned this to the doctors who made morning rounds day after day.  We met one who was very concerned about this and encouraged us to go over the oncologist head for answers.  We eventually took this as a sign.  This sign would be one more thing pointed us to our final desitination

We sat down with our family one night and asked everyone's opinion.  We waited and listened to what everyone thought.  I had already discussed at length leaving home and going somewhere else for treatment with on of the nurses who had done just that with her child years before.  When it really came down to a decision - there wasn't one to be made.  St Jude was the best at treating childhood cancer.  As my dad said "why go to someone who can do the same as someone else, when you can go directly to the source?"  So, that's what we did.

We made plans for someone to take care of our house and yard.  We forwarded our mail to my parent's house.  They very generously offered to take care of our bills so we could both go to Memphis and be there together with Cole.  We were amazed at their generosity, as well as the kindness of strangers.  So many people were doing things for us to lend their support.

Less than one month after finding out about the tumor, we dropped out of school, turned in our notice to our jobs and packed up our band new van with everything we thought we could need for 8 weeks and left town.  We left our family and friends and headed into uncharted territory.  What we would find was the best place in the world!  We would find doctors and nurses who would love and care for Cole as if he were their own.  We found friends that will last a life time.  We found hope, courage, strength and community.

I wouldn't wish this experience on anyone in the world.  I certainly wish this it had never happened to us, but looking back, I wouldn't give anything for the experiences we had during this time.  The lessons learned will continue to educate us for the rest of our lives.


Just wanted to add, at the time, our hospital in Mobile had one oncologist - only one.  They hadn't had a brain tumor kid there in at least ten years.  I feel like they did the best they could with what they had.  The oncologist finally came to see us but it was the night before we were scheduled to be transported by ambulance, with the van following, to Memphis.  Memphis will forever hold a large piece of my heart.  The city loves those kids - there aren't tons of funny looks when you are wheeling through Target with your bald kid.  No one stared when you quickly left a restaurant because your sweet bald baby boy just threw up on the table.  Chick fil a would cook fresh chicken when Cole showed up.  So many nice people cared for us there and loved Cole.  One day I hope we can give back more than we've done so far.  One day, I want to teach there and have Cole there volunteering and playing with kids.  I want to be one of those people loving on those sweet babies, hanging out with the teens and painting the girls nails.  I want to be there.

It's still a little sad when we go back for check ups - always worried if something will come back - always worried about test results.  But it makes me happy at the same time, if that makes sense.  We have friends that don't go for check ups because their babies earned their wings and are looking down on us now.  I'm so very thankful that's not us, and I'll remember those babies forever.

We were lucky, blessed and fortunate.  I'll never take that for granted!!!

Thanks for reading along - if you made it all the way through!!


Monday, February 11, 2013

February 11th and 13th, 2005 - we've come so far since then!

This is what I wrote about Cole's birthday, eight years ago.

Happy Birthday Cole!  Finally we're in a regular room, things got much better for all of us.  We were all sleeping in the same room, when we could sleep, that is.  Somehow, Jason and I had been sleeping together in one of those tiny fold out chairs.  Cole was able to get out of bed and ride around in a wagon or play in the playroom and eventually, was able to get down in the floor and play.  There were improvements each day.  But still we waited and waited to hear the results of the tumor.

In the meantime, several follow up MRI's were done to ensure that no cells remained.  We were relieved to hear good results.  It was indeed totally resected and there were no additional tumors anywhere else.  We had the same technician each time that we had the first time.  At this point, after surgery and once we knew the tumor was really gone, we were much  more at ease and even able to tease the technician a little about working on his poker face.  I can't imagine how hard it is for the medical staff to know things are bad and hide it from the patient and families.

While waiting for one MRI to finish up, I was talking with the surgeon in the hallway.  We told him that, thanks to my dad, we had read about this new pinpoint radiation St. Jude was doing.  It limits the amount of overall radiation to the brain.  This is a huge development when you think about shooting something at your child's brain that could possibly harm his learning later in life.  I recall the conversation ending with the doctor saying "you can't have your cake and eat it, too."  This was his response when I told him that we expected Cole to develop, physically and cognitively, like any other child and that we would base our decisions for treatment on what would give us that result.

During this time, I was diligently searching for information and came across a message board for parents of children with brain tumors.  They became my support system while we were in Mobile.  Many moms told me who their doctors where and most suggested we get to St. Jude.  We continued to have this in the back of our heads, but wanted to find out what the results were first.  In the meantime, we contacted St. Jude, just to see what it was all about.  

February 13th

We decided to have a huge birthday party for Cole today.  We already had a cake my mom had made and all the things ready for his party at home.  We just brought the celebration to our giant hospital room and celebrated away.  Cole was able to sit with his Daddy and unwrap his gifts.  We planned a Wiggly birthday party, but it quickly turned into a Thomas the Tank party.  I think he ended up with every Thomas toy available in Mobile.

**** Cole's turning twelve today and eight years ago, I never gave a thought to what this day would look like.  I'm hoping it's everything he wants it to be and more.  I pray each of his days are always the best!


Wednesday, February 6, 2013

February 6th, 2005 through the 9th

A little more coming at you...........

Just six days after brain surgery, Cole was sent home.  I was scared to death.  I didn't think he should be sent home yet.  He was still of steroids and still having problems just turning his head.  The doctor on call assured us that everything was ok and Cole would do better at home.  So home we went.

Cole did seem to improve slowly over the next day or so.  He was very swollen from steroids when we left the hospital and we saw improvements soon after being home.  He even rolled over in his bed on his own. February 8th was Fat Tuesday.  Cole celebrated it by sleeping, and sleeping and sleeping some more. One whole day.  We would wake him up to eat and he would immediately fall right back to sleep.  He had a low fever which the nurse said was ok and not a big deal. 

The next morning, we woke up to a 105 temperature  It was indeed a big deal now.  We rushed to the emergency room.  They determined Cole had an infection of some sort, possibly staff, and maybe meningitis.  We were more scared at that moment than any other in the weeks before.  We watched a doctor and nurse insert an IV in each of his little hands and proceed to do a spinal tap.  Cole didn't even cry.  He barely flinched for each needle.  Later we realized what a miraculous thing that was.  He's had so many spinal taps, or lumbar punctures since then that we lost count.  Each time after that, he would have to be sedated for the procedure.  It was very rare for a child to be awake during such a thing. 

Once the antibiotics were flowing and the temperature was down, things got much better.  Cole was back to his new self.  He was trying to move around in the bed and talking and laughing.  By that afternoon, we felt relief once again.  We went back to ICU and would remain there for several more nights.

The pediatric oncologist visited with us many times and let us know that they sent tumor tissue to other hospitals for second and third opinions.  We asked for a fourth - St Jude Children's Research Hospital.  In this day of technology, you can't search for pediatric cancer on the internet and not find a link to this hospital, so we thought they should be checking on Cole, as well.

*** Those days seems so long, buy my thoughts about them just a year later were much shorter that I expected.  I haven't read this is a very long time - but I'll never forget!!


Tuesday, February 5, 2013

February 5th, 2005

A little more of Cole's journey - this is what I wrote about February 5th, eight years ago.

As a result of not being able to move around, Cole was very stiff.  He would cry in pain when we tried to move him to his right side instead of the left he had been on for so long.  Once we got him to lie on the right side, this helped the stiffness, but we noticed how weak the left side was now.  This was nerve damage from the surgery.

Days later, we were moved out of ICU and into a small room on the regular floor.  Unfortunately, we still had the baby crib though.  A neurologist came to see us and talk about the future.  His idea of Cole's future and ours didn't go well together.  He was very discouraging.  This was the first time we had every been faced with a doctor that told us so bluntly what to expect.  We would later realize that he was giving us the worst case scenario and that wasn't acceptable to the three of us.  Later, Cole would prove this to be true and he continued to fight so hard to be a typical little boy!

***I remember being so worried about Cole not ever being able to use his left hand again, being able to walk, etc.  Later we were told to get used to a walker, or even a wheelchair.  Well, Cole showed them!!  Thank God for that!!


Thursday, January 31, 2013

January 31st, 2005

This is it - THE day! 

We tried to keep Cole occupied with toys and treats and movies until surgery Monday morning.  This is when his addiction to puzzles began.  We had a few before this, but suddenly that's all he wanted to do.  Each time someone left and returned for a visit, they had another puzzle.  I think by the time we got out of the hospital in Mobile, we had about 40 puzzles.

Once the big day came, we didn't know what to expect.  The hospital was wonderful to us.  They had a very large room available for Jason and I, along with all our friends and family.  We took Cole down for his surgery and waited for the team of nurses to take him back, once again.  Just a few minutes before it was time for him to be taken back, he fell asleep.  Our prayers were answered a second time.

Finally, surgery was over and the doctor came to see us.  He told us everything went well.  He was able to remove the entire tumor.  This is about the time when that terrible word was mentioned - cancer.  We would have to wait to get results of the tumor, to know if it was cancerous or not.  This is where the numbers came in to the equation.  75% of this type of tumor are cancerous.  It's the best type of brain tumor to have.  Right, you're saying - there's a good brain tumor?  If 75% are cancerous, that means 25% aren't, and that's got to be us.  The doctor liked that we were optimistic, but continued to handle the situation as if we were the 75%.  He told us the pediatric oncologist would come see us and give us some books and pamphlets and as soon as they had the word, they would let us know if it was cancer or not.

We knew that there could be complications from surgery.  We knew that he would have a lot of stitches.  We knew that he might not be able to focus and see us well that first day, since his eyes may have some nerve damage.  What we didn't know is that he would barely be able to move.  The drain was in place again and Cole had to lie in a certain position for that to work properly. This meant we couldn't pick him up and hold him for a few days. 

Since he had to lie in a certain position, he just laid in his hospital bed in the ICU, listening to his favorite movies.  He couldn't focus to see the television, but he could hear every word.  He knew five seconds before the movie was over that it was the end and would quickly request the next movie.

***It seems like I had more to say leading up to this day than on this day.
Again, thanks for reading and letting me share!!


Monday, January 28, 2013

January 28th, 2005

Continuing on Cole's story - here's what I wrote on January 28th, 2005:

We went to the hospital this morning packed for the weekend.  Before we left, we took a picture of Cole standing by the front door, ready to go.  It was the last picture of the old Cole we would have.  We stopped at WalMart for a toy, some snacks, possibly peace of mind that some part of the world was still normal.

The first procedure was to place a temporary shunt in Cole's head to drain the fluid that was causing so much pressure.  We headed to surgery where we would be with Cole until they were ready for him.  The plan was that a nurse would take him back to surgery but we could be with his while they did a little paper work and got everything ready.  This was very scary since Cole would be awake and have to leave us with some strange nurse he didn't know.  We prayed and prayed that Cole would fall asleep before they took him.  Just in time, our prayers were answered.

This was a fairly quick procedure that left Cole with a shaved head and bandaged head.  He was so brave and strong, we were amazed.  When he woke up, he was very upset and scared.  He immediately wanted his daddy.  Cole was normally a Mommy's baby, so to want Daddy was strange for me.  In one way, I was sad he wanted someone else, in another relieved because I was scared to pick him up and possibly hurt anything.  He was hooked up to so many wires and tubes.  Jason say in recovery holding Cole, praying, crying and gaining strength he would need for this journey.  Later, he told me that this was a journey from him and Cole.  He felt like several things had happened to him recently that prepared him for this.  I didn't ask for an explanation.  I knew that it probably wasn't something he could put into words.  I was so proud of him for being the wonderful father that he is, but I was heartbroken at the same time.  Cole didn't need me at a time when I desperately needed him!

The weekend was filled with many visitors and prayers for our baby, while he was in ICU.  We were overwhelmed by the outpouring of love and care for us and Cole.  The thing that surprised me the most was how brave Cole was.  He simply adapted to this new situation with such ease.  His bandage on his head was larger than necessary to keep him from touching the incision.  The end of the bandage was tied into several knots and Cole decided that he had a tail just like Eeyore.  He told everyone around that he had a tail like Eeyore.  He loved it.  He also asked everyone for a toy when they came to visit.  So the spoiling would begin.

In ICU he was in a hospital baby crib.  It was terrible for us not to be able to snuggle up there with him.  But with the spoiling came lots of cuddly soft stuffed animals that kept him company.  He also snuggled a ton with his baby blanket, which was mine when I was a baby.

Again, WOW - I'm so amazed by Cole, each and every day!!

Sunday, January 27, 2013

Eight years ago

This is something I wrote in 2006 about this day, eight years ago.  I just wanted to share here. Be prepared, it's long!!! (many more entries to follow in the coming weeks)

January 27th, 2005

We were pretty nervous about the MRI and didn't really explain to Cole what would happen.  We got to the hospital bright and early on Thursday morning and waited for our turn.  the radiologist came to speak with us and explain the MRI and the possibilities of IV and complications that could occur.  The radiologist told us about contrast and that they use this occasionally to get a more detailed scan.  He said it was rare that this was even needed.  This was one less thing for us to worry about.  We hated the thought of an IV in his little hand. Right after Cole received his sleepy medicine, Maw Maw, Paw Paw and Grandma showed up to be there with us.  We had a hard time getting Cole to settle down and fall asleep for the MRI, even with the sedation medicine.  When this finally happened, we went into the MRI room and watched him get placed on the table and hooked up to monitors.  We were able to stay in the room with him during the enter MRI.  It was so loud they gave us ear plugs.  I'm not sure how he could sleep through it, even with the sleepy medicine.

Just when we thought they should be finished, the technician came in.  We asked if there was a problem and he said "Oh, we're just running contrast."  We instantly knew.  Neither of us mentioned what this meant, but we knew.  I will never forget the look on the technician's face.  He knew, too.

Around 10:00 am the MRI was finally finished and we headed home.  Cole was begging to stop at the book store, his favorite place.  He was still so out of it, we really wanted to go home and wait for him to wake up a bit more.

We were turning into our neighborhood when Jason's cell phone rang.  He had an urgent message at work from our pediatrician.  He returned his call right away.  The doctor didn't ask where we were or the normal "are you sitting down?" that you would expect.  He just said we suspect your son has a brain tumor.  I think Jason almost took out three different mailboxes.  What a call to receive while driving down the road.

The doctor told us we had an appointment with a brain surgeon at 2:00 pm that very afternoon.  We had several hours to wait and just didn't know what to do with ourselves.  A large amount of emotions were pouring through us.  We made a few phone calls to family and tried to keep Cole entertained and shield him from our tears at the same time.  Meanwhile, Cole is begging for the book store and the "Thomas the Tank" table.  We finally headed to the bookstore and were met by the familiar sites we always loved:  books, lots of books and that wonderful train table.

Jason's mom, dad and grandma were still with us and now his brother was on the way, too.  As soon as he got the call from his mom, he left work and he and his wife checked their son out of school.  Time seemed to be of the essence.  They met us at the bookstore and tried to comfort us while we were at a loss for words.  Jason played with Cole while the parents drank coffee and looked from one to another.  Being the mom I am, I was looking for brain tumor books.  As a whole, we get used to looking up anything on the internet and find answers.  I actually asking the bookstore girl if they had any books on brain tumors.  Little did I know what a broad topic I would be dealing with.  They didn't have anything at all.

At two o'clock in the afternoon, on a beautiful sunny day, we entered the doctor's office.  We being me, Jason, Cole, Grandma Jean, Maw Maw, Paw Paw, Uncle D, Jamie and Michael.  We asked for the biggest room they had.  We were our of luck.  The only place we could all fit was the waiting room.  The doctor was stuck at the hospital in surgery so we weren't sure how long our wait would be.  After waiting in an exam room for hours to see him, we were really nervous and anxious.  The rest of the family was still sitting in the waiting room, just as anxious and nervous as we were.

Once the doctor finally arrived, he gave us the results.  It was a brain tumor.  They suspected medulloblastoma, which is a brain tumor located in the back of the brain.  This certainly explained all the symptoms.  The tumor was putting pressure on the part of the brain that causes the vomiting reflex, and also stopped the flow of the cerebral fluid, therefore, giving him headaches.  The crossing was a direct result of the location of the tumor, as well.

Within fifteen minutes of shaking the very hand that would save my sons life, I was at ease.  Later, I realized I was also very naive.  In my memories of that day, cancer was never mentioned, although Jason swears it was.  Long term side effects were not spoken of.  Just strictly here's the problem, here's the solution.  The doctor told us that they could do a small procedure to relieve the pressure from the fluid build up and then do surgery.  We asked when and he said tomorrow.  I didn't think anything would happen this quickly.  It all seemed so cut and dry.

We asked the doctor how many times he had done this surgery and what would happen.  He said he has performed brain surgery 100's of times.  He had moved to Mobile just the month before.  Had we been diagnosed any earlier, he wouldn't have been available.  We would have had to leave the comfort and security of our home and travel without out family to some strange place to have Cole taken care of.  As must as we would have loved to not have Cole sick for those six previous months, we realized how lucky we were that the tumor was found when it was.  This was out second encounter with luck now.  The doctor informed us that he would follow Cole forever to ensure this would never return again.  He also said he would pray for Cole.  That said more to me than anything else.

We all headed to McDonald's afterwards, for a happy meal for Cole and then went home.  We made phone calls and explained what would happen to everyone we knew.  What a mouthful of information to understand.  We were sad and we were tired.  Our family stayed with us for a while, playing with Cole and running to go get dinner no one could eat.  I returned to my cozy bedroom to lie down.  There's just something about feeling bad, emotionally or physically, that a soft cozy bed can fix.  I had been feeling so sick to my stomach since finding out.  Jason found me huddled under the electric blanket and joined me.  We tried to talk about it, but were at a loss.  We had looked up this type of tumor on the internet, but found no website that said your child will be fine, don't worry.  It was a very long restless night.  In the meantime, Cole had been playing and enjoying being with his family, having no clue what would lie ahead for him.

WOW, just typing it out makes me remember each  moment, movement and thought from that day.

I thank God that Cole is here and doing well!! He's our little miracle!

If you made it to the end, thanks for reading!!

Saturday, January 19, 2013

Book update

So, I mentioned that I wanted to read more this year. Thirty five books sounds like a lot but in reality I may read more than that in a year. I have no clue!  Regardless, I'm going to track my books this year. I've already read Safe Haven by Nicholas Sparks and I've finished Ali's Pretty Lies by Sara Shephard. I started Burned by Sara Shephard this past week.  So third week in January and I'm on my third book. Not too bad!!

What are you reading?  Give me some suggestions!


Friday, January 4, 2013

Books, books and more books

So, I've been thinking about goals for 2013.  I have promised myself that I'm going to scrapbook again.  I'm going to try to do Project Life this year, but not a photo each day, more a summary of the week.  Maybe three photos for each week?  I haven't decided yet.

My other goal is that I really want to read more - although I read a lot already.  I'm thinking of setting a goal to read 35 books this year.  I'm not sure how many I usually read, but I've already finished one this year.  So, here's to 35 books in 2013.

I'm going to start making a list of what all I want to read.  I don't want to just read fiction either - which is all I really ever read - so I'm hoping to work in some non-fiction stuff, as well!

So, what are you working toward in 2013?


Tuesday, January 1, 2013

One Little Word 2013

So, it's that time again.  This year my word is create. It's time to create again.  Create craftiness for fun.  Create memories and document them. Create more opportunities to show what I'm capable of at work.  Create better relationships/friendships.

My BFF moved several hours away in September. It's still sad to me. I miss her just dropping by to tell me if my outfit is okay.  I miss texting her random crap for no reason.  I can still do that but I don't. She could be busy.  I feel like she's so far now, I shouldn't bother her. I need to create that relationship again.  Distance shouldn't matter.

Cole is changing so much. Growing up right before our eyes. I've pinned tons of things about mothers and sons. It's time to create moments for those things. Mother/son dates that don't involve running to Walmart. Things like that.

It's just time to create more. Live with less crap and clutter and create more things that are meaningful.

I'm going to do it!

What are you going to work on this year? Do you make resolutions?


Happy New Year

Well, I just went back and read my blog post this time last year and wow! I failed at lots of things I wanted to accomplish.  I didn't take more pictures. I didn't make it past the first month of Project Life.  I'm not sure I was present enough. At least not as present as I thought I would be once I picked my One Little Word for 2012.

So what I'd I do?  Well, I got a job. I started working in a self contained classroom as an aide with a wonderful teacher, another aide and some great kids. I really didn't think the special Ed or exceptional Ed world was for me.  Until I was in it.  I'm not sure if I ever talked about this here or not but I was scared to death of special/exceptional Ed when I was in college. I had a teacher that was very 'worst case scenario' all the time. She had me believing I'd have a kid in my room that had a full time nurse and they would be hooked up to ivs and feeding tubes during class! WHAT? I was scared. The next semester I spent numerous days in the doctors office with Cole while he was sick.  Months later a cancer diagnosis would answer all our questions and even our prayers. Yes, I said that. But only in the sense that we had answers. And we could fix the problem finally.  So God picked me up out of my safe little world and dropped me smack into the world of wheel chairs, ivs, never ending medical procedures and feeding tubes. I guess he showed me.

I wish I'd had the ability to pay a little more attention to the nudge from above.

We survived cancer and were made stronger because of it. We learned a lot. We went through a lot together. We tried to return to normal life but it did take a while. It was hard to leave behind the security of the hospital. I mean, St. Jude was the DisneyWorld of hospitals. Not much to worry about there. Thy took care of us. I spent so much time not worrying about the day to day stuff and just focused on keeping Cole happy. I never paid attention to the nudge.

Back to 2012.  I loved the job I had and was told it was mine as long as I wanted it or until the principal found another place better suited for me. Then the summer sped along and I helped get our room ready. I love that part of teaching - creating a safe haven for the students. Something welcoming and warm. Somewhere they will love!  Then the principal called. He had another plan. Sadly, it still wasn't a classroom. There was a classroom but he felt it wasn't the place for me. I trusted that and have been shown time and time again that he was right. I was right to trust him.  Anyway, another position was available that he felt was more suited to what I'm trained to do. I was excited but sad at the same time. I would miss my kids. And I do miss them even though I see them each week in the halls at school. Quick little hugs are great!

This new position was a lateral move. Same title, same pay, different kids. I'm in nine if fervent classrooms now working with exceptional Ed kids. Kids that just need a little more help. Kids like Cole. I actually get to work with Cole a little and I live it.

The nudge is more present now.  Almost like a shove. Why didn't I get a degree in ex Ed? Why did I not feel the nudge until recently?  I just choose to ignore it I guess?  Just pushed it aside. Don't worry, I'm not going back to school for ex Ed. But I do wish I'd made another choice. I may be employed full time already had I done ex Ed. But that's nothing I can change now. Not quickly anyway.

So, while I didn't scrapbook or photograph Cole more or document our life enough or be present in e dry situation I did get a job. I did learn what I can do. I did learn that by being so present at school, I got somewhere. My foot isn't just barely in the door anymore. My whole body is there. I'm on payroll. I'm paying into retirement. I have sick days. Well, not anymore because I had the flu the last week of school.

I was present somewhere. And it counted. I worked.

While my new word for 2013 will be from a different perspective, I still want to live in the present, be present!!!

How was your 2012?  What was your best accomplishment?

(No spell check or proofing. I'm typing on my new iPad that I won!!!! Sorry or not reading over my words)


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