Hiatus

Kait:  I want to preface this post by saying that Jake has been doing really well.  We've had a lot of fun together during his hiatus from chemo, and Jake's personality has returned.  He has a loud cackle that makes everyone in the room laugh too.  His infectious smile is on display most of the time and his appetite has returned full force.  We took the family to the Big Apple circus, LEGOLAND, mini-golfing, the mall, horseback riding, golfing, the playground, Chuck E. Cheese's, and Toys R Us.  Basically, anything they wanted to do, we did.  Don't get me wrong, we had a ton of fun, but, there was no way to keep the sad thoughts from creeping in.  The elephant was always sitting in the corner telling us not to get too comfortable.  I would see him laughing and think "in a few days he is going to be in pain again."  I would see other healthy children playing and feel sad that Jake wasn't able to play to the fullest because he is tired, or just doesn't feel like himself.  This week gave us a small glimpse at how life will be after he completes chemo and we hate that he has to jump right back in just 16 days after surgery, after he has had a taste of life without constant pain, medicine, and doctors.
I am nervous about his surgery.  I am afraid to tell him what is going to happen because he knows enough now to not want to go to the hospital no matter what it's for.  I took both Ethan and Jake to his clinic appointment last Thursday and Ethan spent time talking with Layne (the child life specialist) while Jake got his blood counts checked.  Layne explained the surgery to Ethan and made him feel involved and special.  Jake's counts were perfect, confirming that his surgery will go as scheduled on 2/26/13. 
  I wanted to explain Jake's surgery in case anyone is wondering.  His surgeon said that he is an excellent candidate for an allograft which is the replacement of a bone with a cadaver bone.  Jake's tumor is very big- it is almost the size of his entire left tibia.  Thank God, it doesn't effect either growth plate.  The surgeon will make an incision from just below his knee down to above his ankle and remove the tumor.  The tumor is his tibia from below the top growth plate to about an inch above his bottom growth plate.  Like I said, it is big.  The surgeon has to remove a lot to be sure to get a good amount of healthy bone and tissue surrounding as well.  This is called removing with good margins and is important for removing tumors.  He will then place a tibia from a cadaver in the empty space and secure it with plates and screws.  He'll stitch him back up and be off to recovery.  We won't know if he'll be just bandaged or in a cast until he comes out of surgery because it will depend on how secure they are able to make the new bone.  The whole surgery should only take about two hours since he is so small.  He will be in a wheel chair for several weeks until he is cleared to start some weight bearing, but it will be nine months before the bone is heeled completely.  His tibia will continue to grow as normal because bones grow from the growth plates out. 
 
Something that I haven't spent much time thinking about is the cadaver.  It's been in the back of my mind ever since we were told he would be getting this surgery, but I haven't confronted my feelings on it before.  I know that it is possible for Jake to get a new bone because another child died and his or her parents consented for their child to be an organ donor.  A pair of broken hearts have generously given a priceless gift so that my baby will be able to walk and run and play for the rest of his life.  No one and I mean NO ONE wants to consider that they may be in the position to make that decision...ever.  But, I now know what our decision would be.  Sigh...every single piece of this journey is so hard and painful, stressful and depressing.  I am trying so hard to be strong and keep it together.  I try not to think too hard about things because all I need is a little crack and I'll fall to pieces.  I hate hearing my little boy cry and I know that is my future for the next step.  Yet, this step is absolutely necessary for his recovery.  I just want it done with so I can know what to expect and can take care of him without the mystery of how our life will be post-surgery. 

I talk about Ethan and Aubrey a little bit but a lot of people have been asking how they are doing so I thought I would share a little bit.  Ethan was nicknamed the "class encyclopedia" in his pre-K class and he still loves to share information.  He is so sweet, smart, and funny, and he has a heart of gold.  I call him my angel.  I'm not sure if it's because he's five or because his little brother has cancer, but Ethan has been acting out.  He has been very angry with me and he hates when I have to be in the hospital with Jake.  He calls me several times a day asking me to come home.  How do I explain to a five year old that Jake needs me just a tiny bit more?  I feel like a terrible mom for even saying that because I know Ethan needs me too.  When I am home I spend extra time with him and shower him with love and attention but he still has outbursts and I've found that he just needs a good cry now and then.  Don't we all. 

Thankfully, Aubrey is not old enough to know what's going on.  She doesn't cry when I leave but she is very happy to see me when I am home again.  My Mom (Grams) takes care of her when Jake is in the hospital during the 5 day stays so I don't have to worry about her or Ethan.   I have no idea what I would do without her and am so thankful that my Dad insists that she come even though it means that he is alone for a week at a time.  I say it a lot, but if we didn't have the support from our family and friends that we have this would be next to impossible.  

As I type this, Randy tells me that Ethan said he is sad that Jake has to go back to the hospital.  He doesn't want him to have to go anymore and he misses him.  I am mad that he has to go through this and honestly it's just not fair, and the phrase "no one said life would be fair," is bullshit.  Telling myself that doesn't make it hurt any less.  I wanted to be a Mom my whole life and I have the three beautiful children that I always dreamed of.  Cancer wasn't supposed to be a part of it.  I think positively 99% of the time but there is that 1% of my brain that lets a thought in that cracks my shell.  What if he doesn't beat this?  I know, I know, I know, that he has to beat this but I can't help but let that thought in once in a while.  If I never had those thoughts I would not be human. And, because I can't imagine life without Jake, it gives me the drive to fight the cancer even harder.

Hug your kids a little tighter tonight.