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. 

On the ride

Kait:  When we first met Jake's oncologist, Dr. Katzenstein, he warned us that searching google can be a bad idea.  So what do I do?  I search on google.  At first I was looking to find a kid Jake's age with Ewings sarcoma, dark blonde hair, brown eyes, wears size 9 shoe...(you get the picture) and I wanted to read that he tolerated treatment, had a successful surgery, and was declared cancer free.  Obviously there is not a kid in the world that meets this exact criteria.  I was never going to find the storybook tale because there are no two situations alike.  I can find a boy with a solid tumor in his tibia but he's 17.  Or a 3 year old with a tumor in her heel.  Or an adult who beat it as a child with flying colors.  It finally dawned on me that all of us who are parents of cancer fighting heroes are doing this without a manual, and while another child's fight may be similar, no two are the same.  That realization is not a comforting one to me.  So, now my google searches consist of finding blogs like ours, of people strapped to a roller coaster with no way to get off.  I guess in a way it makes me feel better to know that we're not the only ones who think we are not handling things too well.  Sometimes I find some great advice too.  One thing I read was from an oncology nurse and she said that in her 20+ years as a nurse, in most cases the parents and family got hammered...the kids did fine.  Every day is hell for a while but to a kid it's just a short time and they go on about their business.  So maybe Jake won't be emotionally scarred from this.  It's entirely possible that I will be the one who is scarred, and I'm hoping to use my scars to raise awareness, raise money, and volunteer.  There is no way that my life will ever be the same or that I will ever be able to forget everything that we're going through. 

What a small world we live in.  I was given a gift certificate to get my hair done (a donation coordinated by Jake's teacher) and I used it this past Friday.  After I told Alicia at Utopia Hair Salon all about Jake, she told me that her cousin's young son is fighting a brain tumor.  It is unbelievable that there are so many children fighting cancer and I never knew it!  These kids live in our cities, towns, and neighborhoods.  Did you ever think you would know a kid with cancer?  Now that my own son has it I see it all the time.  My eyes have been opened to a world that I didn't want to be a part of.  A world full of unimaginable heartache, love, stress, tenderness, pain, togetherness, confusion, and support.  See the roller coaster?  With every negative there seems to be a positive right behind it.  I love reading all of the comments posted on here and on Facebook.  It makes me feel so good that we have all of this support, and I am proud to be the Mom of a boy who has touched so many hearts.  The other day Jake said "You know what, Mommy?  I am very brave."  Yes, yes you are sweet pea.

Jake had been doing very well since his last treatment until two days ago.  He started showing signs of mucositis again and has been in mild to severe pain because of it.  He has not had a fever which means as long as we can manage his pain we don't have to take him to the hospital.  Lortab and fluids are about the only things we can do to help him which makes it really hard.  Mucositis is described as having a sunburn inside your mouth and throat and, in Jake's case, can affect the entire gastrointestinal tract.  If he's just sitting watching cartoons he is fine.  If he touches a sore with his tongue, swallows, or passes gas he is in agonizing pain.  Think of your worst sunburn and imagine someone slapping you on it a few times and you can get the idea of how it feels for him.  He is still drinking a little so I'm hoping he is on the uphill slope.

We have an update about Jake's surgery.  It was supposed to be on 2/12/13 but Dr. Katzenstein was worried that his body won't have enough time to recover from his next chemo treatment.  So we have postponed the surgery to 2/26/13 instead.  This will give him a well deserved break from chemo and pokes and give his body enough time to be healthy for surgery.   That way he will have the best chance at recovering from surgery quickly so that chemo can resume.  As of right now his 6th round of chemo is scheduled for 1/31 (this Thursday) and he will be admitted for 5 days.  Thanks for praying for us and for loving our brave boy!

Taking a day off

We knew that Jake would be having a follow-up MRI while we were in the hospital but we didn't know when.  So at 6:30am on Friday morning we were awoken and told to head down to radiology because they were ready for Jake.  Talk about waking up on the wrong side of the bed!  Jake was so cranky all the way until he was sedated.  It took about an hour and then he came back to me where he said "I did a great job."  After sedation he is very tipsy so the nurse brought a Jake sized wheelchair so that I wouldn't have to carry him.  I'm not sure why, but he hates riding in a wheelchair.  He screamed the whole way back to our room and was back to being cranky for the better part of the day. 

The oncologist making rounds came by to see how Jake was doing, and to play with him for a bit.  I asked about the MRI from that morning and he brought in his computer and did an in depth comparison between the first MRI and this one.  The first MRI showed a soft tissue tumor surrounding the tibia, lots of splotchy shading up and down the bone, and hair-like cracks extending from the inside of the bone out (which were pushing the "skin" of the bone out).  The MRI from that morning showed that the soft tissue tumor was gone, the cracks were gone, the tumor was a little shorter (up and down), and the tumor itself is essentially liquefied.  This is what the doctors want to see happening and it means that the tumor is responding well to treatment.  This also means that Jake is an ideal candidate for segmental resection and allograft reconstruction without sacrifice of the growth plates or knee joint.  This means take out the ruined bone and replace it with a cadaver bone.  His leg will grow normally.  So, we got wonderful news and we are really happy.  All the terrible and hard things about this feel better now that we know it's working.  We are so thankful for all of you who have been tirelessly and faithfully thinking of and praying for us! 

Two other cool things:  we got the pictures back from his photo shoot at the hospital and they are awesome.  Here are a few:

 Secondly,  our family was chosen by Lighthouse Family Retreat to go on a beach vacation in Florida with other families going through similar situations.  We are really excited to get to go on a vacation this year when we had thought that that wasn't going to be possible. 

With treatment 5 under our belts and a very calm past few days, we are breathing a little easier.  Jake has been eating (a ton) and has been feeling good.  His teacher, Lisa, said that he was more like his old self: shouting out answers, tattling on other kids...etc.  (LOL) The norm for a 3-year-old.  At home he has been playing and laughing with Ethan, taking his medicine with minimal complaints, and just being more like Jake.  I have hope and faith that we will get through this and get our little Jakers back! 

"How's Jake?"

In most of our blog posts we have shared updates about our lives, and some insight into how we feel.  It has been a little therapeutic for us to share our world, and more importantly we can open up our world to our friends and family.  It helps to see comments and "likes" on Facebook because we know that people care.  We see that people now take time out of their day to check on our little man and our family's progress.  We've decided that on Facebook we will stick to brief updates and positivity, but on the blog we want to be free to explore our emotions.  We need this as an outlet for our grief, and it is a LOT easier to type these things than to say them out loud.  If you have advice, a prayer, a thought, anything...please share it with us. 

Randy:  In all of this we have still remained a little bit guarded, even with some of our more emotional blog posts.  When I'm at the shop and people ask, "How's Jake?", I usually say quickly "He's good", and then a few lines where I talk about his upcoming treatment or surgery.  I don't make it seem like puppy dog tails and sunshine, but I definitely don't dig down very far to find my answer.  This situation is so unique, so rare, and so terrible that I often hide reality.  If I did open up and explain how I REALLY felt, I would sound like a pretty unhappy person.  I could almost guarantee that you wouldn't want to ask "How's Jake?" again for fear of having to be trapped in that conversation.  I don't want to be "that" guy.

The reality is....this is utter hell.  I hardly know my son anymore.  He's a different boy than the one that was running in the street on October 16th when he collided with Desmond and got hurt.  He is nowhere CLOSE to the same, and only once in a while do we catch a glimpse of how he used to be.  Kait and I have to administer medicine to him every day in the form of a shot that never goes without one of us holding him down screaming his little head off.  He has to drink awful tasting medicine twice a day on the weekend.  He screams and we have to hold him down to get him to drink it and sometimes he just throws it back up.  This medicine will prevent him from catching a nasty form of pneumonia, so he has to drink it.  The rest of the days he take anti-nausea medicine every six hours and pain medicine because the shots make his bones ache.  He's 3 and can't be reasoned with.  He doesn't understand that without all of this medicine his story doesn't have a chance at a happy ending.

Quite a few friends have said "call me if you need to talk"....but what do I tell them?  What do you say when you know that there is no advice.  There is nothing anyone can say that will change these realities.  We are living out our worst nightmares, every parent's worst fear.  We have been thrown into a world that we're trapped in, and there is no exit door. I even hesitate opening up to Kait for fear that it will drag her down even more.

Kait:  I have a lot of anxiety.  I look into Jake's eyes and see fear, pain, uncertainty, and confusion.  I spend the days trying to make him happy while trying not to create a spoiled monster.  I spend lots of time, money, and gas driving to restaurants and buying food for him that he thinks he wants.  Most of the time it doesn't taste right to him and is a waste.  But, I have to try to get him to eat.  He is frail and thin.  Sometimes he stares off into space and I think the emotion on his face is depression, but he doesn't know what that word means.  I think it has to be what he is feeling when he wants to eat something he loved and discovers it isn't good anymore, or he goes outside to ride his scooter only to feel too tired after a couple minutes.  I wonder if the changes in his personality will be permanent...and if they are, how will we know if he is the person he was supposed to be before he went through hell, or the person he became because of it?  Does it matter?  Is it one and the same?

I worry about his upcoming surgery.  What and how much do we tell him?  Should he just go to sleep and wake up not being able to walk and not knowing why?  Will this fact cause emotional problems or trust issues for him in the future?  I hope that since he is only 3 that he won't remember most of this.  I worry that what he does remember is that Mommy held him down when people were hurting him and forced terrible things down his throat.  I googled "how to handle stress when your 3-year-old has cancer, you have a kindergartener, and a baby, and your husband goes to school and works." Even if I break those thoughts up to try for a better result, I still can't find what I'm looking for.  How are you people doing this?  Randy and I both no longer meet strangers eye to eye because we know why they are looking at us.  Why do we care if they look?  I used to be the person that smiled to let strangers know it's okay, to make them feel more comfortable.  I hate to say that I would rather just look down or at my kids instead.  What if I don't have the strength to hold it together?  There is no telling what would set the tears flowing.  And once they start it takes a good while to stop. 

I know there are many people who are in much worse situations than ours.  I can't imagine how hard it must be for them if it's this hard for us.  We said to each other from the start that we were going to share our story, good and bad, to help raise awareness.  When times were rough we were going to be open, even if it meant people thinking less of us.  We are doing the best we can with what we have, and hopefully that will be enough.  Even though this post has not been the most positive, please don't give up on our story.  Please don't read into this blog as us saying our friends aren't helping, because that's not at all what we're saying.  We love all of our friends and family, and you guys are helping us in more ways than we can express here.  Sometimes there just isn't anything you can say or do.....

Plans

We met with Jake's surgeon today to discuss plans for surgery. We thought it would be a quick visit but it ended up taking all afternoon. Jake had new x-rays and then we talked with Dr. Oskouei for a while. He said that from the x-ray it looks like the tumor is responding well to chemotherapy and he is confident that he can remove the entire tumor. He will do an allograft, which is replacing the affected area with a cadaver bone and he will use screws and a plate to attach it to the remaining bone. The doctor left the room to check the schedule for surgery and we spent the next several minutes freaking out a bit. For one thing, the tumor is not the size we thought it was. Not that we ever asked, but we assumed from the first x-rays that it was about 2 inches of his tibia just up from the middle. The tumor is actually most of his tibia and in the bone marrow of the tibia! So now instead of picturing that he would remove a couple inches of bone he will be removing all of the bone from one dotted line to the other. (see picture)  The dark circle is where a piece of bone was removed in the biopsy.  All of the white shaded area is the tumor. 

He will have a scar from below the knee to his ankle. Then Randy said "he won't be able to play contact sports," and I just about lost it. He is (was) such an active kid and loves sports so I was really sad thinking about having to keep him away from those activities. The doctor came back in so we could ask more questions and he said "Of course he can play sports. He can sky dive for all I care! He can completely resume normal activity after it heals (in about 9 months)." We assumed that the cadaver bone would act as a rod or a placeholder but it will actually become his bone with blood flow and will act just like it was always his. It will also not effect his growth since the growth plates will not be harmed in the surgery. As in everything having to do with this journey, we were on a bit of a roller coaster worrying about what would happen and how Jake's life would be. But, from today's consultation we are feeling a bit better and we think that the outcome will be a good one. After that, we just continue to kick this cancer's butt! Jake has to get through two more rounds of chemo and provided that there are no setbacks, surgery will be on 2/12/13. Thank you to everyone who has been praying for Jake and for us. We know it's helping and God is listening.

Here's to 2013

So, as you know we didn't celebrate Christmas the way that we had planned.  Jake was still in the hospital feeling completely miserable and quite possibly didn't even know Christmas had come.  Randy and I had planned to trade off on the evening of Christmas so the rest of us drove to Egelston to have dinner together.  Jake would hardly swallow his own saliva, let alone eat, drink, or talk.  But, he did want to open presents.  We weren't expecting him to be interested in that so we only brought a couple of his presents with us and once they were open he wanted more!  He only stayed in the hospital for two more days and was able to finish opening his presents when he got home that Thursday.  We would like to take this opportunity to thank each and every one of you who helped make this Christmas a great one for us.  You know who you are, and we thank you from the bottom of our hearts.

The next day, Aubrey started throwing up and it proved to be a stomach virus when I started on the same path that Saturday.  Unfortunately, Jake, Ethan, Randy, my Mom, and Randy's Mom all followed.  Poor Jake had hardly eaten a thing for 10 days straight and it showed.  He lost a lot of weight in that short amount of time.  He started to feel like eating again on Tuesday and has been doing a good job since.  He was admitted for his 5 day chemotherapy treatment (#4) on Thursday (1/3/13) and his weight loss triggered a nutritionist to come check on him.  Even though he had been doing better, she changed his diet plan to a high calorie diet, 5 meals a day with snacks in between.  I am basically giving him food every 30 minutes all day long...my new full-time job, at least for the next couple days.  So far this chemo treatment has been a breeze, and I'm happy to report that accessing his port was actually a tiny bit easier this time. 

Randy and I have both been struggling a bit with Jake's appearance.  We are so saddened to see him looking so weak and frail.  I watched a video of him from his birthday this past June and he looks completely different now.  He was such a little boy with a round face and chubby cheeks.  He used to be so independent, adventurous, and confident and now he relies on us for everything.  What a difference a few months can make.  I am trying really hard to find the balance between comforting and babying and I've found that it's a difficult thing to do.  In the hospital it is comforting to me to snuggle with him, play with him, watch movies, and give treats to him.  At home, I want/have to try to get things back to normal.  I can't give him all of my attention without neglecting Ethan and Aubrey and sometimes it's loud in our house with all of the kids crying at once.  They are all so young and most of the time only Mommy or Daddy will do. 

The new normal is there is no normal.  I keep telling myself that.  The boy who only wanted to eat Hershey Kisses every day no longer likes Hershey Kisses.  The boy who used to climb and then jump off of everything doesn't even want to walk down the hallway without holding our hands.   The boy who is smarter than most 3 year olds now whines or talks in "baby talk" a lot of the time.  What can I do to get my Jakers back?

I apologize for writing such a disjointed post, but my mind has been jumping all over the place tonight.  Another year come and gone and I have a feeling that this will be the longest and shortest year of our lives.  We are looking forward to meeting with Jake's surgeon next week to discuss plans for surgery.  He'll be getting new scans done soon to check on his progress and to help determine what type of surgery he'll be facing.  For now, here's to a happy, yet tumultuous, new year!