Treatment number 11

Kait:
Jake is being admitted today for treatment number 11. This is the last time that he will get doxorubicin, the "red devil" that causes mucusitis and heart damage. Because it can cause heart damage, Jake will have an echocardiogram before they start chemo today. I'm guessing that if there is anything wrong with his heart that they won't give him dox today. He has had echocardiograms before with clear results so we are hoping for the same today.
We are sitting in a clinic room watching Thomas the tank engine while we wait for an inpatient room. Admit day is the longest day of waiting. We got here at 10am for his appointment, signed consent forms, got labs and vitals, waited for the lab results, and got some juice. His EMLA cream is on his port and we are ready to get the port accessed and start his fluids.
Now it's 12:00 and he has just had his port accessed. He screamed "no no no no don't do it. Please no," over and over. The nurse is very quick so it's done within a few minutes and now he's back to watching his movie. He did ask for an extra piece of tape on his tube so that "mommy won't pull it out and hurt me." Kids have such great memories. Ugh.
Once he gets a bag of fluids in him he can give a urine sample and then the chemo can be ordered from the pharmacy. Although, not before the echo. So that is an added thing to wait for today.

Tomorrow is Ethan's last day of school and he is so excited to celebrate his birthday at school. Randy is going to bring cupcakes at lunch and I am not happy to be missing it. At least this is only a two day treatment so we can be home tomorrow afternoon and then celebrate his birthday on Saturday. We are hoping he will feel happy, special, and loved. We are trying to make his day extra special because he feels the effects of Jake's cancer too and he deserves to be the center of attention.

This past week, Jake has started physical therapy. He is to go twice a week for 8 weeks. They are mostly doing strength training for his arms and right leg plus stretching and massage on his left leg since he isn't allowed to walk. He loves it and it's so nice to take him to an appointment where he doesn't cry about going. This summer is going to be a challenge because Jake wants to do everything that Ethan does and doesn't understand why not. He wants us to be his legs to play tag and hide and seek. Of course we can do this sometimes but not all the time. I mean, he is heavy! Plus we have Aubrey to chase after as well. And, her favorite thing to do outside is run away. Hopefully, Jake will be able to learn to maneuver better in his wheelchair so that he can have a little more independence while simultaneously saving my aching back.

One other piece of news is that Jake's oncologist is leaving for a position at Vanderbilt in two months. We like him a lot so this was sad news for us. We are thankful that he is his doctor for the majority if his treatment and we know there are wonderful doctors who will take over for him.
It's a scatterbrained post like usual! Thanks for all of the well wishes, thoughts, and prayers for our whole family and for following our journey.

The cast is off...now what?

Kait: I have been worrying about Jake's follow up appointment with the surgeon, Dr. Fletcher off and on for weeks. It's been in the back of my head and pops up here and there, like when Jake asks if he can play soccer. I am looking forward to him playing but more importantly I want him to walk. I realize I am complaining, but Jake is almost four and he's getting heavy. We have to carry him to and from the bathroom, to the table, to get dressed, basically anywhere he needs to go within the house. Maybe I'm just getting weaker. He has his little wheelchair which was designed by someone with a sense of humor. The handles for us to push are as short as the chair...back breaker! We get him to practice wheeling himself but he gets tired easily and from what I hear its not an easy thing to do.

Eleven weeks have gone by since surgery. What should we expect for the next eleven? We arrived at Jakes's appointment and first thing was to remove the cast. He started screaming and yelling "no, don't do it!" I asked if he was worried that they would cut his skin and he said yes. We explained, once again, that the saw cannot cut his skin and from then on he just watched. He cried (in pain, confusion, discomfort?) once the cast came off and refused to set his leg down on the table.

We were sent back to the waiting room to wait for x-rays next. Jake cried for Randy to carry him while holding his foot or leg in the air. I guess after having it in some sort of cast for so long it feels very strange to have it breathe. He completed the X-ray and then we waited for the surgeon to come discuss them with us. The X-rays look very similar to the ones from the day of the surgery. His two plates and fifteen screws are still in place and exactly how they were put in that day. Dr. Fletcher is concerned with two things at this point: that the plates and screws are not bent and that his growth plates are not closed. If his growth plates close for some reason then his leg would stop growing and would be cause for further surgery and decisions down the road. Thank God that both of these things are exactly how the Dr wants them to be! From the X-ray is doesn't appear that his bone is fusing with donor bone yet, which is to be expected. This type of surgery takes a very long time to heal, especially since the size of the bone they removed was so large.  I was hoping that Jake would be allowed to start weight bearing sooner than the original projection of November, but after this visit no such luck.  We go back in three months for more X-rays and hopefully then we'll see some progress.  Jake is to begin gentle physical therapy twice a week for eight weeks.  He is allowed to take off the boot to bathe and swim, but otherwise it should be on.  There is a possibility of his Achilles tendon tightening up too much without help of the boot and PT.  We were told that sometimes surgery is needed to fix the problem but not to worry about that because it is a minor surgery in comparison to what he's been through already. 

His skin is very thick and peely, but the incision looks good

We waited for Jake to be fitted with his boot and then we were headed home.  He is very happy with his boot that looks GIANT on his tiny leg :)  I feel like I did after his surgery...worried about hurting him or carrying him wrong.  I assume that in a few days I'll feel more comfortable.  Until then I'll keep faking it.  Show no fear!  

Jake is our superman.  He goes through so much and still keeps smiling.  We are so lucky to have our three wonderful children, and that through undesirable circumstances we are able to share them with the world.  We will make it through this and we'll be closer and stronger because of it. 

©K&C Photography

 

Graduation...and one more hurdle

Today was a great day for Jake as he got to graduate from preschool at Monroe High School as part of the Little Learners program.  From day one he has loved going and meeting new friends, and the students that teach have been absolutely fantastic.  We learned tonight just how bright our future is with these high school students that plan on being educators, they are truly special for all that they do.  The entire program is lead by Lisa Sizemore, who we could fill the blog with adjectives describing how wonderful she has been to our son and our family from the very beginning.  The entire program has gone out of its way to accommodate Jake's condition and have been so supportive in including him in every activity possible.

Tonight he received his diploma after a very cool presentation full of music and a video recapping the year with the Little Learners.  It would be nice to say it was all smiles, but there were some emotional parts when we saw Jake's pictures from early in the school year.  He was so innocent and healthy, having no clue of the monster that lurked in the shadows.  It was also an emotional moment when he got his diploma.  One of his favorite students Zach pushed him across the stage to a great round of applause from the audience.  Anyways it was a great night full of laughs, playing, food, and getting to be around the kids that have been so kind to our little man this year.  Mrs. Sizemore has a great group of students and we are so thankful Jake was able to be a part of the program.

Tomorrow is really the last real unknown or hurdle we will face before the final chapter.  We will meet with the talented Dr. Fletcher to determine how well Jake's leg has healed and if he is ready to start with some light physical therapy and have his cast taken off.  We hope that everything is healing well, as Jake has said little to nothing since the first two weeks after the surgery.  Hopefully the news is good and we can take one more step towards our little fighter going back to being a little boy again.

After the results tomorrow night we'll post another update and let everyone know what Jake's next steps are.

The Gorilla in the Room



Randy:  There haven't been that many posts from us the past few weeks, and there are a couple of reasons for that.  I guess both of us feel like we haven't had much new happening and so we assume the other has something to blog about.  Anyways here we are, 2 days home from treatment number 10.  We're past the halfway point....time flies when you're having fun....RIGHT?...(crickets).  I have come to grips with what brought some of the anger and emotion in the last blog out.  You see since this all started in October we have had a constant barrage of dates and deadlines to look forward to.  Since November 5th when Jake was diagnosed there has been a gorilla in the room that we were distracted from, which is his mortality, and our future as a family.  We didn't realize it but we are at the point in the treatment plan when we start to wait.  I mean there are plenty of chemo treatments left, but those are things we've dealt with, old news.  The next new and excited chapter in this story is the ending.  We find out next that either Jake beats this and goes on to live a normal life or......the other ending.  That has been a tough reality to face, and to put it in other terms is the gorilla just stood up and introduced himself.  We realize this has led to a lot of tension internally, and it has spilled into our relationships with each other, our friends, and anyone else close to us over the past few weeks.

Kait had been taking Jake to all of his 2 day treatments because I have school on Thursdays and work both nights, but this time I offered to take him and close the shop because Ethan had an art show at school.  I have been to Egleston many times, and it has a weird "home" feeling now, but I hadn't been with him during a clinic admission yet, so this was new territory for me.  It started simple enough but quickly went downhill as he pooped his pants just after getting into a clinic room.  Now I need to say that Jake is completely potty trained, but since his nasty mucositis he is very scared to poop, so he holds it......for more than a week at a time.  This is important because when "it" happens....IT HAPPENS.  I had to take him to the lobby bathroom and it was down his legs, so his pants had to be cut off (can't get cast wet), all over his wheelchair.  I finally got him back into the room with some shorts on and we waited.  About 10 minutes later he informs me that he needs to pee, so I carry him to the triage station bathroom....

and the day got much worse...

As I picked him up I didn't realize that his tube was caught under the base of his IV pole and it pulled it out.....completely.  Fluids were already running so it bled like a head wound.  It was down his legs, on his sock, all over me, and the only thing I could do was pull the emergency help tether on the wall.  About 6 nurses came to help and get the access needle completely removed.  I took him back to the room and he calmed down after a while.  Of course then he had to have his port accessed again so he had to deal with that a second time (his least favorite part of the hospital).  This has happened two other times, once by each of us, but this was apparently the worst because every time I went to pick him up or move him the rest of the day or Friday he would whimper and say "Please don't hurt me daddy".....ouch.

Anyways the rest of the stay was pretty uneventful, as Jake met some new friends in the playroom and I met some more parents to share stories with.  When in the room he watched Team Umizoomi and Toy Story 3.  This was a lighter chemo load as the "red devil" (doxorubicin) was not on the schedule this time so we were discharged by lunchtime on Friday.  Jake takes everything in stride and smiles no matter what.  This quote seems fitting for his predisposition to everything:

A piece written for Jonathan Agin, CKN Editor

Fundraising and Advocacy

Randy:

Before November 5th, 2012 childhood cancer wasn’t on my radar, or anywhere close to the front of my mind.  That morning it all changed when our son was diagnosed with Ewing’s Sarcoma.  We went through all of the normal (if there is such a thing) thoughts and feelings that anyone else would in that situation.  They were all present; from denial to acceptance, grief to feeling numb, and helplessness to anger.  As we started to settle down it was natural to do some reading.  Now I want to be clear that we tried to avoid reading about survival rates and prognosis, more about the community in general.  The internet is a dangerous place where you can read not only anything you want to see, but anything you DON’T want to see as well.

We started to learn about the world of childhood cancer, and its extreme lack of funding.  We realized that our government will spend more annually on aid to Bangladesh than on all childhood cancers combined here at home.  Learning how archaic the treatments are, and that the real advances come in administering existing medications more effectively, rarely in new drugs being introduced.  Some childhood cancers have little to no treatment at all, and some have absolutely zero drugs that have been developed for them, just some others that seem to work a little.  These things left us with a burning question:

“What can we do to change this?”

Anytime you tackle awareness on an issue you need an audience.  If you don’t have an audience that is somehow tied to your cause the attention will be minimal.  If you have a child diagnosed with cancer, your audience is your friends, coworkers, relatives, church members, bowling league, customers, and anyone else you contact on a regular basis, and if they know you, they are captive.  Now I’m not saying you should grab every person you know and tell them to donate money to a cause (you would find yourself with fewer friends), what I am saying is that if you choose to walk this path, you can make an impact by just telling your story.

Advocacy is simply defined as public support or recommendation of a cause or policy (credit: dictionary.com).  By simply telling your story and putting them in contact with people that can make a difference, you are advocating.  Everyone’s level of involvement will be different.  I personally found it my battle cry and have tried to make a difference whenever possible.  I have used it as an outlet for my frustration with the situation, and every dollar I raise helps me feel that we are one more tick closer to ending this fight.  Other people are less comfortable and just dealing with their child’s sickness can be enough to keep their plate more than full, and there is NOTHING wrong with that.  You have to choose the level of involvement that suits your lifestyle and comfort level.  The last thing you want to do when dealing with the Super Bowl of family crisis is to add more to your plate than you can handle.  If you do choose to pick up a sword and join the fight, the best weapon you have is your honesty and your story.  I think people too often think about cute bald kids that are happy and smiling when they think of childhood cancers.  They don’t know the horrors that those of us that have lived it have seen the REAL world of childhood cancer.  By telling your story through social media and being open with people that ask, you can be the voice that raises awareness.  

I can’t stress enough though that this has to be what is best for you and more importantly, your family, and everyone has to be on board.  My wife was a little slower to pick up a sword and join the fight, and at no point did I ever think less of her or think she was doing anything wrong.  Everyone will deal with an emotional trauma like this in different ways, and most of those ways are totally acceptable.  There is a great network of parents out there that can help, don’t be afraid to ask.  If you’re new to this, we have stood in your spot and felt how you feel.  We are taught as adults to be autonomous and handle things internally (especially men), but this is a road that you almost can’t walk alone.  Don’t be afraid to ask for advice, and if you’re up to it, pick up a sword and join the fight.

Tired...and a little jaded

I have to apologize...I realize that most of the time my blog posts are bitch sessions....if that bothers you....best thing to do would be to hit "back on your browser".  

Randy: I wish I never knew about pediatric cancer. I mean that...I really do at this point. On October 15th we were shown the door...and it looked scary enough just peering inside for a few seconds....then on November 5th we were shoved through and the door was locked behind us. I've learned more about myself, our society, and people in the 5 months since that day than the 33 years that preceded it. These have been both good and bad lessons, seeing the best of us that I talked about back in December, and seeing some less than desirable behaviors. People being incredibly generous, both with assistance and more importantly time. People willing to put their own lives on hold to help our family enjoy some slivers of normalcy. I've also seen people withdraw from us, whether because the friendship wasn't very strong to begin with, or the fear of not knowing what to say or do.

I can give a piece of advice....not knowing what to say and saying the wrong thing is WAAAAYYYYY better than disappearing when your friend needs you.

 I wish we had never been shoved through this door. I wish I could go back to October 14th....and be ignorant to this world. I wish Jake had just simply broken his leg....how great that sounds now. I remember thinking that Saturday night "wow how awful if our little boy fractured his leg?"....lol...yeah that would be horrible now. Now I get to watch Jake, Ethan, and Aubrey get robbed of a normal childhood on a daily basis. Jake now has completely irrational anger, Ethan is acting out, and Aubrey is just too young to say "hey why the hell is my brother always crying?"....but I'm sure she is thinking it.

 I used to cry a lot....it helped. When I felt the need I had some things that would bring the emotion out. The song by Phillip Phillips "Home" was my first outlet. As time has passed I learned the story of Anna Basso, who courageously fought Ewing's only to succumb to this piece of shit disease before her life could really get going. Her favorite was "Float On" by Modest Mouse. That is my favorite song to run to, and it was the song I chose to have playing when I finished the half marathon in March. None of these work now....I honestly feel like I need a good "release" on a regular basis...but the emotions just won't come out anymore.

I want to yell....but nothing comes out....

This is taking its toll on me...my marriage....my ability to concentrate....my health. I don't eat well anymore...I drink more than I should....I don't sleep enough....Running used to be my outlet...but I can't seem to stay healthy long enough to keep that hobby up. I get angry way too fast now....I threw eggs all over the kitchen and then promptly put my fist through a wall this morning......really? Am I fucking 14 years old...? How pathetic do you have to be to take your anger out like that??

I know that which does not kill us makes us stronger...maybe this is killing me? Is it okay to feel angry...? Okay then....FUCK YOU CANCER!!!!

Under the weather

Kait: Jake wasn't feeling well on Friday so he wasn't able to come to The Color Run with us on Saturday. He has had some pain in his bottom but didn't have a fever until today. He woke up with a fever of 101.8 which is very dangerous for him. He is considered "high risk" so they put him in a room at the emergency room right away. Kind of like an ER VIP. They did a chest X-ray because he has a little cough and swabbed him for strep. Both the test and the X-ray came back normal so we aren't sure why he had the fever this morning. They have given him two antibiotics, one of which targets the intestinal tract so that if he has a tear in there he will be covered. He is being cross matched right now to receive a transfusion. His white blood count was .34 this morning, platelets were 6.7 and ANC was 320. All of those numbers are low. They aren't as low as times before when he has been admitted so they said we might get to go home on Wednesday. If his counts recover enough then he could possibly still get chemo on schedule this Thursday, but that is a wait and see how it goes type of thing. I wouldn't want to be in the hospital for a week straight, but I also don't want to delay his treatment. So, like usual, we are at the mercy of this cancer...more specifically of the treatment. There are so many fundraisers and charities working hard to raise money and donate for research, it just gives me hope that there has to be better treatments on the horizon. I know not for Jake, but for the countless others who will be diagnosed after him. Hopefully in the future the treatment for Ewing's will be just an inconvenience instead of a life changer.

There are two things I want to mention, one of each coming from my Dad and from my Mom and both are related to faith. Two days before Jakes's limb salvage surgery we went out to eat at my favorite restaurant. We wanted to enjoy a relaxing dinner together before our worlds would change once again. Sometimes I can't think of anything to say. My brain is tired and I often just sit and stare into space. Apparently I was doing just that and must have had a certain look on my face. Dad got up (visibly upset) and went to get some fresh air. He went out front where a man stopped him. The conversation went as follows:

The man: "sir, is everything alright?"
Dad: "no, it's not".
The man: "what can we do to make it better?"
Dad: "nothing. Actually, you can pray for my grandson."
The man: "then I'll do that"

Dad began to walk away and turned to look back at the man but he was gone. Nowhere in site. Only now Randy was walking toward him. The story gives us chills. How often does a total stranger stop another person to offer comfort? And the fact that he just disappeared? A guardian angel, perhaps?

I mentioned in a previous post that I keep reading the stories of other children who have lost their lives. I was following one particular story about a baby named Heaven. She was diagnosed with PNET when she was about 8 months old and fought it hard. At 12 months she was struggling and put in hospice care. The family went for days, maybe weeks expecting her to die at any moment but she kept fighting on. Finally at 13 months old she passed away. She was barely older than Aubrey. I was telling my Mom about Heaven and asked her why God would put her family through the heart wrenching days leading up to her death? Why would God let her suffer that way, let alone her family? Why prolong the pain and misery? Mom said "it was explained to me best that life is like a tapestry. But we are living on the other side of the tapestry- it isn't beautiful, there are strings in knots and out of place. We can't see or understand the masterpiece on the other side." Maybe these hard things happen so we can learn something. Maybe so that we will come closer to and trust in God. Maybe we aren't meant to know the why. Every time I read about a child who is losing their battle I think of the tapestry. I hold onto that idea because I can't handle the thought that all of these beautiful lives lost are for nothing.