Thursday, January 5, 2012

Have I mentioned cancer sucks lately?

Well, it does.  Back in August Cole had his check up at St. Jude - all was well, it was an easy visit.  We were told we were on our last 6 month check up and now he only has MRI's once a year.  Such a relief.  We were able to get out a little and do a few things while we were there.  We went to hang out at The Target House one night for an event they were having.  We just really wanted to see what had changed there - we lived there for five months, so it was our home.  Cole loves to go back and check it all out.  Many things had changed - rooms updated, playgrounds updated - they always take care of the families there!!

We were standing in line to meet the Target Team drivers (Nascar, Indy car) and Jason started talking to a family in front of us.  Their sweet boy had Cole's scar.  He looked to be about Cole's age at diagnosis.  His name is Justin.  He wouldn't talk to us or Cole but we knew that was normal for the situation.  He wanted to go back to the room because it was loud.  His dad held him the whole time we were there.  It was all so familiar.  We talked for a long time, made it through the line, took our pictures with the racing guys and then talked a bit more.  We swapped email and CaringBridge sites and chatted a little about what things we be like later.  They were excited to see that Cole was fine - walking, talking - interested in most normal little boy things.  We talked about how hard it is when it's all over, how hard it is to leave your new family and return home.  How hard it is so leave the comforts of St. Jude - the people that know exactly what boat your in.  The people who know how you can't sleep at night and worry over every cough, every time they can't go to the bathroom, every test, every bite they can't eat - all of it.  We talked about how nice it will be to sleep in your own bed, and how you'd sleep all night again.  I remember Justin's dad looking at Jason like those were all such magical words.  We were both moved to tell them it was all going to be okay.

It's not okay.

Justin finished treatment and was released to go home in November.  They had a great Thanksgiving.  They began homeschooling and things were going well.  Christmas was coming and they were doing fine.  Justin was excited!!  Then they didn't update their page for a week.  When they updated, they had just found out that he had two tumors in his brain - not in the same location as the previous tumor.  It was back.  At the time, Justin wouldn't talk to them, he was very sick.  He couldn't focus on anyone.  He wasn't himself at all and it looked really bad.  I've been praying that things would change.  That he'd get a miracle.  Yes, a miracle.  They happen - they really do. 

They  had discussed surgery with the surgeon in Memphis.  After talking it through, they decided against it and returned home.  Hospice came and set everything up to keep him comfortable.

Things started to change once again.  Justin started playing, reaching for people, giving kisses.  He's still not talking, but able to focus and play Mario!!  They decided to rescan, to see if anything had changed.  The tumors were full of blood on the first scan, so I think, since he seemed to be improving, they thought the bleeding had stopped.  My thoughts were maybe the tumors weren't as bad once the bleeding stopped.  I was praying for a miracle.  Praying the tumors would just be gone.  Stranger things have happened.

I have been stalking their site since yesterday morning.  Checking my phone during class to see if there had been an update.  Nothing.

Finally this afternoon, I got my email notification.  Sadly, there are no changes.  Justin's mom feels like they've just been given this opportunity to spend this time with him.  Happy time when he's feeling okay and knows who they are and that they love him.  I just cannot imagine how hard this is.

If you have the time, please pray for them.

I really can't imagine what they are going through.  I wish I had words of wisdom, well, no I don't - I don't want any wisdom in dealing with what they are dealing with.  But I wish I had words of comfort.  That's what we thought we were giving them in August.  We thought things really would be okay.  I hate that they aren't.

We only spent a short amount of time with them and don't really know them, but still - my heart is breaking.  You can read their site to see how things are going.  He's getting a wish tomorrow from Make-a-Wish.  He deserves so much more than that.

We are so so so very blessed!!!


erin said...

Thank you for posting this Lisa! My girlfriend lost her son to his 2 year battle 2 years ago…always hope, always hope though! Blessings!

erin said...

thank you for posting this, Lisa! thank you! theres always hope there always is! my girlfriend lost her son 2 years ago…at the tender age of 4, but friends of ours daughter is in remission. Blessings!


Blog Widget by LinkWithin