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. 

The Roller Coaster

Randy:  Saturday started our first day of our short time of "normal" with Jake.  We went to the mall and played mini golf, ate dinner, and let the boys ride the train.  We got up Sunday morning and went to the Big Apple Circus, where the kids had a blast.  After that we went down to Phipps and Legoland Discovery, which Ethan had been asking about almost daily since he learned it existed.  When we arrived we were disappointed to learn that all tickets for the day had been sold, but Kait spoke with the manager and explained our situation, and an exception was made.  I can't thank the manager there enough for allowing us to go through anyway, it would have really ruined the day.  The kids had a great time playing with the build a race car lego area and we left for dinner at On the Border.  

I try to remain positive and hide any fears or anxiety I may have.  Between school, the shop, and this I really don't have time to get too focused on one thing for a while.  Tonight as we kept the circus under control at dinner I began to come to the realization that Jake wasn't going to just go back to the way he was.  All day he was quiet, shy, almost scared to have much fun.  Sure he did some laughing, but not the way he did before November 5th.  As I watched him eat dinner and noticed the people staring around the restaurant, I realized that this next 10 days was as normal as it would get for the next year.  Our lives pre-November 5th were completely gone, and we would never know that life again.

It really got me bummed, and I took it out on Kait on the way home as we had a pretty nasty spat.
We spent the last 30 minutes of the drive in silence while the kids slept in the back of the van.  I had this numb sort of anger going through me, and I couldn't pinpoint why.  As we approached the house I realized that I was wrong and apologized (way too late, but I at least made the effort).  I took my own emotions that I couldn't get out and turned them into a fight with the one person that always has my back.  The reality of what is happening is...

I am mad.

I am tired of being a sideshow when we're in public.
I am tired of seeing parents treat their children like shit.
I am tired of seeing parents act like their children are a burden.
I am tired of not knowing who Jake is day to day.
I am tired of seeing this take its toll on Ethan and seeing him act out.
I want my little boy back, and to be "normal" again.

We got home as we got them out of the car it hit me...all of it...I wasn't even able to get the kids out of the car before it got me.  I had to walk away and as I stepped out of our garage and around the house it came over me like a tsunami.  Hurt...anger...fear....all rolled into one.

I cried for 15 minutes, uncontrollably.  I went to my knees in the grass and almost threw up.  It just kept coming.  I couldn't turn it off no matter how hard I tried.  I finally got it together and came inside and as I got Ethan into bed he had a weird look on his face.  I asked him what was wrong and he said "nothing".  I told him that it looked like something was on his mind and he reached up, hugged me and whispered in my ear, "Daddy, I just love you so much."

How does a 5 year old come up with that, at that moment?  He had been fast asleep as I unloaded the contents of my mind in the grass outside of the garage....how could he tell that something was wrong?  Of course after choking out, "I love you too," I left the room and buried my head in Kait's shoulder, and after another 10 minutes of bawling my eyes out again I think I finally "got it out".  Admitting this on a blog to friends and complete strangers seems a little strange.  In one day I experienced excitement, joy, pride, anger, frustration, remorse, and sorrow.

Maybe this is what "normal" is now?

I dare you

Read this and you can begin to understand how we feel.

Read this and you can begin to understand what we're going through.

Read this and let it make you mad enough to help us do something like this mom has. And, if you feel like spending the day crying and wallowing in heartache,then read through the whole blog. That is not something I can do right now..

http://rockstarronan.com/2012/10/02/breaking-news-childhood-cancer-is-not-rainbows-and-buckets-of-sunshine/

Hope

Kait: After a very long wait for Jake's PET scan on 2/4, he was discharged from the hospital, so Randy brought him home. We immediately piled into the car to go to Wendy's where the fundraiser was being held for us. We drove up and saw the sign with Jake's name on it and and we were excited for him to be feeling well so he could enjoy the night. We had a great time and had some delicious food!

Jake's oncologist reviewed his PET scan with Randy and he was very pleased with the results. The tumor is no longer lighting up on the scan like it was before. This means the chemotherapy is working. It's one thing to hear it but it's another to see the proof! We are very excited from this news and hope to continue on the path to recovery.

Jake went to school the next day but didn't feel up to going on Wednesday. He started feeling a little sluggish but not too bad. Friday afternoon he started running a little bit of a temperature but not enough to warrant a call to the hospital. He slept terribly that night and I was worried so I took him to the ER at Egelston to be checked out. They did an X-ray of his belly because he was complaining of pain and they found that he had a large amount of poop built up causing his intestines to distend. He was admitted and they started him on lactulose and an antibiotic (just in case). It was discovered that he also had a urinary tract infection. He spiked a fever that night and whenever that happens he has to stay in the hospital for a few more days. Plus his red blood counts went down overnight so he is getting a transfusion today. Ugh. I really didn't want to be here! So now it's Sunday and nothing has changed, except that he hasn't had a fever again. He can't be discharged until he is fever free for 24 hours, his white blood counts go up at a significant rate, and his blood cultures remain negative for bacteria for 72 hours. The white blood counts can jump miraculously overnight but the other two things we have to wait and see.

Randy took Ethan and Aubrey to the circus today and we found out that they will exchange the remaining two tickets for a different show date! Depending on how things go we may go to the circus next weekend instead. We also have a lot of things planned to do once jake is feeling better. The kids are going to choose whatever fun activities they want and we are going to spend a lot of time together before Jake's surgery on the 26th. My emotions have been going up and down lately even though we got the news of his chemo working. Don't get me wrong, it is good news, but I just want to be done with this. I want it to be gone and I want to close the door on this chapter. Unfortunately, this chapter will never be completely finished because once you have cancer you don't ever forget. There will always be follow up scans to worry about and long term effects of treatment that we won't know until he gets older.

This is really a pessimistic thing, but I saw it on Facebook today and I wanted to quote it because I have been all too guilty of it. If you have been guilty too, don't feel bad, just get even. Help us make a difference!

"What, children with cancer? I'd rather just turn my head the other way and pretend that doesn't really happen, said way too many people."

Up and Downs

Kait:  After my last post, Jake continued to be in pain from the mucositis so I called his nurse to see if we could take him to a hospital closer to home and get his blood counts checked.  I took him first thing on Wednesday morning and the results were what we suspected- very low.  So low that he actually needed to get a transfusion rather than get chemo the next day.  I must have called his nurse, Nan, 6 times throughout the day trying to figure out if I should take him that day instead of waiting until Thursday, but, in the end decided to wait it out.  Once again our plans were being changed and we had to roll with it because there is no other choice.  I was disappointed that he wouldn't be able to stay on track for his chemo and worried that he wouldn't be able to go to the Big Apple Circus on the 10th.  We had bought tickets and were hoping to surprise the kids.  I keep telling myself to go with the flow, but as I had told Randy, I wasn't feeling very good, kind of down.  I was tired of Jake not feeling good.  I had spent every minute trying to do what the doctors and nurses told me to do to prevent mucositis, which is to keep him hydrated and try to get him to eat.  The more he eats the faster his counts recover, and the more hydrated he is the better his G.I. tract will feel.  As I type it out it doesn't seem like it would be that emotionally exhausting, but it really is.  It is just awful to have your child be in pain and you are helpless to fix it. 

Even though his counts were low, I thought he might be recovering because he said he was hungry and was asking for food.  Arby's roast beef, specifically.  Our nearest Arby's is about 15 minutes away but I am always willing to get him what he wants.  Especially when he hasn't been eating much.  I got the sandwich and was on the way to Sonic for a slush drink when he started screaming about it hurting to eat it.  Before I could pull over he had balled up the sandwich and shaken it back and forth before throwing it on the floor.  We have an old minivan with bench seats and I can promise you that there are pieces of bread and beef in every square inch of it now.  Although I am not a fan of cleaning up food crumbs all over the car, I am glad that this incident happened.  I finally realized that Jake was not just in pain, but he was angry.  He was hungry and wanted to eat that sandwich and he couldn't.  He was mad.  Once I asked him if he was mad he calmed down.  His emotion was understood and validated and I think it made him feel a little better.  After that we worked together- me breaking off little pieces of food and him placing them on his tongue.  This allowed him to avoid having to bite into it and hurt his gums.  It makes me sad that he is having to spend this year of his life learning about himself and growing up while fighting cancer.  He has been transitioning from toddler to kid for a while now.  It just sucks that he learns how to vocalize anger from these experiences rather than something normal like having a toy taken from him at school. 

I took him the next morning, his scheduled chemo day, to get the blood his body needed to feel better quicker.  The low counts were making his heart work harder and made him feel tired and week.  The nurse took a blood sample to check his counts and went ahead and accessed his port.  He is getting so much better with that, it is amazing.  Now I don't have to hold him down at all.  He still cries and screams but he knows to hold still.  He has recently told us that he doesn't like to be held down when getting his daily shot and afterwards he tells us that he is very brave and that he did a great job.  His blood count results came back and we were shocked to see that they had gone from 900 to over 4000 overnight.  It is incredible what medicine, prayer, and the miracle of the human body can accomplish.  Instead of all of our schedules being turned upside down we were back on track for chemo and to be admitted that day.  He did still need a transfusion but that didn't effect the parts of his blood that are count specific for receiving chemo.  Jake has spent the past few days at the hospital getting his daily chemo and doing an excellent job eating and playing.  He had an echocardiogram which showed that his heart is doing great.  He is scheduled for a PET/CT scan tomorrow morning and we will pray for it to be clear once again.  Tomorrow night the Wendy's in Grayson is having a fundraiser for our family and we are excited to be able to be there to see friends and meet new ones. 

I wanted to end this post with a request for you to look through this website: https://www.1million4anna.org/  or at least watch this video about Anna:


I have been aware that funding for pediatric cancer research is very low since we found out that Jake has cancer.  Until reading through Anna's page I had never been angry about it.  Now I am.  I am angry that these beautiful children are suffering, fighting, and in a lot of cases, dying because the scientists are not receiving the funding that they need to find better treatments.  I don't know why, but Anna has touched me and made me understand that nothing will change if we don't step up and make it happen.  The Basso family has lost their daughter and are still helping the world and I am so inspired by them.  We have to do something about this.