Dear 5-year-old Jake

Dear Jake,

How in the world did five years go by so quickly? You have grown so much in the last year and it's very exciting to think about who you will be when you grow up. You have always been mature for your age and you handle the toughest things better than most grown-ups. When I think about your 4th birthday, I can't believe what a difference a year makes. You were bald, pale, and couldn't walk. Fast forward to your 5th birthday and you have a head full of hair, are healthy with sun kissed skin, and can run wild. No matter what, you always have that infectious laugh. You are adventurous, gentle, hilarious, thoughtful, and smart. 

You want to be just like your big brother, Ethan, and you are a wonderful friend to him. You often say the most random things and you make us all laugh. We were taking a walk one day and in the middle of normal conversation you asked, "But, how strong do you have to be to carry a house?" You are really into Superman, Star Wars, golf, and baseball. Your favorite movies (right now) are Tangled, Frozen, and The Lego Movie. Your favorite TV show is Paw Patrol.

 You try your best at everything and you understand that doing your best is winning. But, even if you don't win you are always a good sport. Really, your good qualities are countless but even you have your moments. You aren't mean, but you can get mad and do some screaming. It's interesting because sometimes you're just upset because you think you're in trouble and you're worried that we won't forgive you. Sweet boy, everyone makes a bad choice now and then, even my perfect boy, and we will always forgive you.

 You start kindergarten this Fall and you are counting down the days. I hope you're excitement for learning never fades. Happy 5th birthday, Jakers. You will always be my "littlest" boy.

Love, Mommy

Can "If" become "When"?

Kait:

We start sentences with the word "if" all throughout the day.  If it isn't raining we can go outside...if you do your homework you can watch tv...if I eat healthy at lunch I can have dessert...if if if.  In our house we have all of those "ifs" plus the ones that are not so normal.  First, the one hiding in the back of our minds- If Jake beats cancer ______(insert tearful sentiment here).  And the current one- If Jake's counts are high enough then he can get chemo.  Unfortunately, that "if" didn't pan out this week.  His platelets were 23 and they needed to be 75.  His hemoglobin was 5.9 so he needed a transfusion.  What was supposed to be his last inpatient treatment turned out to be just a day spent in the clinic receiving blood.  (Donate blood if you can!)  Disappointing to say the least.  I try so hard to go with the flow but it is so frustrating when there is nothing I can do to control the situation.  I'm so ready to be done with chemo that I can taste it.  The finish line is just out of reach, we can almost touch it!  For now I will have to control myself by not let this setback cloud my emotions.  Jake, however, was ecstatic to get to go home earlier than planned.


Green popsicles (hence the green teeth) keep him happy

 His oncologist postponed chemo for a week to let his body recover and hopefully this means he will be able to handle this last round with no problem.  Once he completes the 17th round he will have one more clinic appointment where his port will be accessed and he'll receive vincristine (chemo) for the last time.  That tentative date is September 5, 2013.  Two weeks after that, on September 19, 2013, he will have all of his scans.  Provided his scans are clear, we will schedule his port removal.  We are planning to have a party to celebrate and will share the details once he completes round 17.  I am a big believer in not celebrating too early so we want to make sure he is able to receive chemo next week before we share details. 

I want to stop the ifs.  I want to feel comfortable saying when.  When Jake finishes chemo...when Jake beats cancer.  Unfortunately with this type of cancer there is no remission so we won't know if he beat it for many many years down the road.  You either got rid of all of the cancer cells or you didn't.  And they can lay dormant for an undeterminable amount of time.  At the five year mark we can start to relax a little.  Until then we can walk on eggshells or we can make the choice to live positively and accept that our "when" is finally here.  It won't be easy but I don't want to live my life in fear. 

A few things

1.  We have talked about some guys running across the country for sarcoma research...Miles2Give...well Sunday is a pretty special day for us...for them...and for Jake. You see Sunday is Jake's 4th birthday, and on that day Miles2Give will be running in Jake's honor. It's awesome that these guys are running for our hero...for our hero! But, I want us to make a difference for the future.
...
Sarcomas are the forgotten cancer...there are 40+ types and most have very little research money devoted to them. As a matter of fact last year the National Cancer Institute devoted a measly $40 million to research all of them....that's it. They have very tough protocols for treatment and some types have low survival rates.

Ewing's Sarcoma has a 10 year survival of 50%....yep....that's right....Jake has a 50% chance of making it to high school. If he had been diagnosed as metastic....that would be more like 10%. There are others....some with lower survival rates.

We can change this....by donating just a little....

Do it in Jake's honor....do it for the people that will be devastated by these cancers.....do it for those that will lose their fights this year from these monsters. We can make a difference....one dollar at a time!

2.  Here is an update about Jake's story in list form.   Just to catch anyone up who is new to our blog :)

11/5/12- A biopsy confirmed that Jake has Ewing's Sarcoma, localized to his left tibia.
2/26/13- After 6 rounds of chemotherapy, Jake had limb salvage surgery with an allograft 9 (cadaver bone)

, two plates, and fifteen screws. He is not allowed to bear weight (a.k.a. walk) for nine months. That takes us to around Thanksgiving 2013.
3/11/13- On Jake's Mom's birthday, we received the news that his tumor had 100% necrosis, meaning that chemo killed it and there was no evidence of disease in the leg.
6/7/13- A CT scan of the chest reveals no heart or lung damage from chemo, as well as no evidence of cancer!
He is projected to complete chemotherapy by September 2013.

Jake is being treated at Children's Healthcare of Atlanta, Egelston, at the AFLAC Cancer Center.

 There is a donation account set up for him under "Jacob J. Russell Donation Fund" at Wells Fargo Bank, as well as an online fundraiser at http://www.youcaring.com/medical-fundraiser/help-jake-fight-ewing-s-/49239  All fund raised are used toward travel and other treatment related expenses. 
Jake loves getting mail and can receive mail at 817 Lopez Ln, Monroe, GA 30655
Kait:
Jake is receiving chemo as I type this.  It is day 3 and he's doing great.  I found out something amazing yesterday while we were talking about riding bikes.  I said "Remember last summer you used to ride so fast down the hill on your tricycle?  Then you got sick and you haven't been able to in a while."  Jake said, "sick??"  He had a very puzzled look on his face and I realized that he doesn't even know he's sick.  I guess it never crossed his mind to question everything he has gone through, and it never occurred to him that it was because he got sick.  In some ways I am very glad about this, and I hope that cancer is just a distant memory for him.  Mostly, I am just so proud of him. 

Jake meeting Atlanta Braves pitcher, Tim Hudson

Pressing on

Kait:  We are working hard to keep Jake hydrated and eating after his 11th treatment last week.  He went in last Thursday for his day 8 vincristine (chemo drug) push and he did okay.  He was very nervous about this appointment and therefore there was a bit more crying than usual.  Since then he has complained of some throat pain and "fuzziness" in his arms and hands, and has had many many bouts with rage.  The fuzziness is neuropathy caused by the vincristine and will hopefully go away once chemo is over.  In the meantime it is hard to hear him cry because he can't hold his spoon or play Mario Cart without his hands hurting.  He has had 5 physical therapy visits so far and is doing great with it.  He is scheduled for his 12th chemo treatment, which is 5 days inpatient on 5/31/13.  During that stay he will have x-rays of his leg as well as a chest CT scan which I'm told is routine and not something to worry about.  It's funny though because as soon as they say "don't worry" the scanxiety kicks in.  There shouldn't be anything to worry about but it's almost impossible not to worry.  Speaking of worry, we took Jake's sister Aubrey for her 15 month check up and found that she has a heart murmur.  Her pediatrician referred us to a pediatric cardiologist to have it checked out.  Better safe than sorry is our motto!  She doesn't think it is something to worry about (there's that word again!) so we're trying hard not to. 

 

Jake's brother, Ethan, had a fantastic 6th birthday last weekend and we hope to make Jake's upcoming 4th birthday on June 9th just as wonderful.  Here is Jake's 1st year video and if you didn't already know, he was a big baby.  12lbs, 6.9oz, 22.5 inches

 

Make a video - it's fun, easy and free!
www.onetruemedia.com

 

As of 5/26/13:

11 rounds of inpatient chemotherapy, 4 ER admits for chemo related illness, 3 surgeries (biopsy, port placement/bone marrow aspiration/radical resection of the tibia), 2 EKGs, 3 echocardiograms, 5 x-rays, 3 blood transfusions, an MRI, and 2 CT/PET scans.  You have been sedated 3 times and put under general anesthesia 3 times.  Your port has been accessed 24 times

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.

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.