I want to thank you for thinking of me as the honorary caregiver this year.  To me that isn’t what I was…. I was a mom taking care of her child.  I also couldn’t have travelled this path alone.  Ron, Josh, Jamie and my family kept everything going at home while Jen & I were spending our time at hospitals and on the road. 

My journey as caregiver started shortly before Easter when Jennifer was complaining that her knee ached.  It woke her up in the night a few times.  We didn’t really think much about it, growing pains – volleyball.  It was when she was sitting on the floor and she said she couldn’t get up and had tears.  That was enough.   We said ok time to go in.  We went in and had an x-ray done.   The following day they wanted her to come back in for a MRI.  So we did and before we got home the doctor had called 3 times.  When I talked to him he said Jennifer has osteosarcoma.  Ok what is that…Bone cancer.  Oh boy!  He said he had already contacted the Mayo Clinic and they were arranging for her to be there on Monday.  Jen was supposed to read at the Maudy Thursday services at church that night…didn’t happen.   

They said her cancer was rare.  It was in 3 different sites in her body.  They told us she had a 35% survival rate after 5 years.  The plan of attack was to hit her hard with chemo then have her first surgery in September.  So she had her first chemo in May.  The nurse told her that Methotrexate was the easiest chemo on her regime.  It darned near killed her.  The chemo wouldn’t leave her body.  They flew in some experimental drug from New York.  That was a 3 week hospital stay.  They took that drug off of her regime.   

The rest of the summer was go to Rochester for a 3 – 5 day round of chemo, come home for a couple of days and then go to Marshall to get her blood drawn to check her counts.  After the first 2 rounds we knew to have our bags packed because we would then have to go straight to Sioux Falls for a few days to get her counts back up.  We would go home for a couple of days then head back to Rochester for another round.  The days we got to be home were precious! 

Her first surgery was a biggie.  They took the ball of her left hip all the way down to the middle of her shin and removed the bone and replaced it with titanium.  This is going to sound gross but we saw pictures from her surgery and they filleted her like a fish.  They said the surgeon was in the top 5 in the world to be able to perform that surgery and her surgery will be in future medical books.  This surgery was a 2 month hospital stay.  After that they put her through a few more rounds of chemo and some grueling physical therapy.   

Her next big surgery was New Year’s Eve day.  They removed a huge chunk of her pelvis on the right side.  After she kind of recovered from that they threw in a couple more rounds of chemo.   In February they removed a good portion of her right lung.    

It got to the point where the surgery on her pelvis area wasn’t healing.  That turned into a 3 week hospital stay on an air sand bed.  It was a really cool bed but that was a hard stay because she felt good and did not want to be there. 

After 20 plus surgeries and a rigorous chemo routine, her body was beat up.  They stopped the chemo treatments and in mid – May they said…. “I am sorry Jennifer but we cannot heal you” 

As her mother / care giver I cherish the times we had.  She was an amazing young lady.  She was wise beyond her years.  She never wished this dreaded disease onto anyone else.  She said, “Who would I give it too?”  It was one heck of a emotional roller coaster ride.  When her hair started to fall out, she called me downstairs and said look as she held a handful of her hair in hand.  After she got on the bus – I cried.  She was adamant that she was going to graduate with her class.  She had wonderful tutors both at Rochester and at home.   During Christmas break we all were home and the other kids went outside to ride snowmobile.  She didn’t ask to go outside but by the look on her face you could tell she wanted to do it too.  Ron looked at her and said go put your big brace on.   We will somehow get you a snowmobile ride.  We got her on but we had to tie her leg to the steering wheel.  I said dear god Jennifer whatever you do drive nice cause if you crash you will be in a world of hurt.  The look of sheer joy was on her face…priceless!  When we mentioned to the surgeon about the ride, he was NOT happy!  She also wanted to get her driver’s license.  What 16 year old doesn’t?  She would give up her pain pills so she could drive.  She wanted to go to a concert by Tonic Sulfa with her friends.  Mind you she can’t walk and is in a wheelchair and she wants to take the car by herself to Hendricks.  Thank goodness she had some pretty awesome friends that helped her on that end!  She loved playing 500, holding babies, riding her golf cart and hanging out with family and friends. 

After we got the news that they couldn’t fix Jennifer she didn’t want to do any trials that would require her to stay in Rochester.  She wanted to go home.  The doctor was not impressed…don’t you want to help out other people.  Nope she wanted to go home.  When we got home she started feeling better and her body was healing and she was going to school, her hair was coming back, we were going to physical therapy several times a week.  Life felt good even though there was a dark cloud hovering over us.  The cancer was growing too fast to do radiation for pain control.  We were faced with tough decisions.  Jennifer was put on hospice.  They said she could be transferred to the nursing home.  Her face had a pleading look like mom you aren’t going to send me there are you…please let me stay here!!  My Jennifer was not going to go to a nursing home.  Then we were asked about resuscitation.  She said well of course you are going to do everything to keep me alive.  I explained what some of that might entail and she said do NOT bring me back.   

Then we were onto planning for her funeral.  She planned a lot of it herself.  The only thing she really didn’t pick out was the bible verses and her casket.   We called Dennis Leibfried and asked if he could come out with some photos or something for her to look at to pick out a headstone.  It bothered both a lot to do this.  After a few minutes it was like Jen this is your headstone, design it the way you want.  If you leave it up to your dad and me we will probably argue over it.  So she started flipping through the photos saying can I have this and this and this and everything she asked for Dennis gave a yep sure can yep sure can!!  They did a fine job!  

In July we did family pictures at our home.  By this time Jen was in a lot of pain and on oxygen full time.  She preferred just Ron and me to move her.  When we were getting her up she said she was never getting out of bed again.  She would take the oxygen off for the pics put it back on for next pose.  We had pizza afterwards, she wouldn’t eat first.  She made sure everyone was taken care of first.  She was right about one thing that day.  She never did get out of bed again.  She always said she was waiting for her miracle…Ron told her that her miracle was coming but not in the form that she was probably looking for.  She asked me one time if it was wrong for her to wish she wasn’t here so she didn’t hurt anymore.   As soon as she said it the look on her face was like I didn’t just say that.   

Her biggest fear was being forgotten.  I told her she wouldn’t be.  She said of course you are not going to forget…you are my mom.   

We knew she couldn’t stay.  It was not right the amount of pain she endured.  If she would have been my dog or my horse I would have put them down.  I remember praying please just take her home! 

This journey that Jennifer went on taught me a lot.  Her faith, her strength, her will power, her courage… it amazed me!  Cancer stole my little girl.  It angers me and I want it gone for good!  I don’t want another person/family to deal with what we went through.  I want to finish this fight!  Forever Jen