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

 

Countdown

Kait: Jake's doing great. The past treatment reminds me of his first treatment. Very little side effects, still playing and eating. Don't get me wrong, I've been loving having my sweetie pie laugh and be himself, but I always have the worry in the back of my mind. My mom came today which means that we will be in the hospital for 5 days straight. I dread telling him that we have to go...hearing him scream "no" as I put his EMLA (numbing) cream on his port. He will cry at least part of the way there and then scream again before the finger prick. He will need to be held down, like in the beginning, when they access his port. He has regressed a little in his bravery since the break from chemo. Including this treatment he has 10 left, so I assume he'll get used to it again. I wish he didn't have to get used to it! I don't know why, but I am more emotional now than I have ever been along this journey. I noticed today that his hair is getting even thinner and his eyebrows are almost gone. Soon people will know right off the bat that he has cancer and I won't get the chance to bypass the questions of passerby's once in a while. I contradict myself quite a bit on this subject and I assume it depends on my mood.  Sometimes I sort of wish that I could just grocery shop in peace, without the stares.  Other times I welcome the chance to talk about it.  People ask "Did he break his leg?" I say "No, he had a bone tumor that had to be removed." I am not afraid to tell people about his diagnosis, but when it is with someone I've never met it turns into a long conversation about how we found it, what the surgery was like, and believe it or not, is he going to be okay? What are things not to ask the mom of a cancer patient for $1000, Alex? I know that people care and are curious, but it would be nice not to ask a mom if their son is going to live. The reality is that I know I have to be open and welcome questions so that people (like us) can see that cancer happens to kids and normal families that live in their town. 

I know that Jake has a really decent shot at beating this. So what is my problem? Well, one of my problems is that I read things on Facebook too much. There are a few pages that I have "liked" that pop up on my feed and they are doing an amazing job of raising awareness. So today one of them is about a teenage boy diagnosed with the same thing as Jake. I think, "Oh, good this will be nice to read." I get to the end of the paragraph and the story concludes with funeral arrangements, or he got his wings, or he lost his fight. These stories are posted daily...and it hurts. I don't even know these people but it hurts to read it. That's why I always have it in the back of my mind that our son could succumb to the same evil. I pray and I hope and I wish constantly that this will not be the case. I remain positive and it's so hard to describe to someone who hasn't had a relative with cancer. But, believe me, it is just so depressing, all the time.  From what I have found from other parent's experiences is that the fear and anxiety is always there, but once you get to the 5 year mark you can start to breath a little easier.

I had a break down last week because I felt inadequate compared to my husband. Trust me, he assures me otherwise. He has yet to blog about it, but he did an amazing job raising money and awareness for both a St. Baldrick's event and The Rally Foundation, and ran his first half marathon besides. Proud doesn't begin to describe how we all feel. I feel like a terrible person putting this out in the open, but I felt like I'm not doing enough and I let my insecurities overshadow the good Randy is doing. (Sorry Randy) This isn't about me, but as a Mom you want to fix everything for your children and I can't fix this for him. All I can do is walk to path with him and help the best I can.  Sometimes that translates to me feeling helpless.  I have found that all of my emotions are heightened, including the ones I'm told are ridiculous. I guess it was time for my biweekly emotional breakdown. ;)

Logistics and treatment-wise, this is what we have coming up: Jake will have two 5-day treatments in a row (admit on 3/28 and 4/11) and then two 2-day treatments in a row (admit on 4/25 and 5/9) provided there are no setbacks. He will then resume alternating between 5 and 2 day treatments until he has completed all 17. Let the countdown begin!

Here is Randy's speech from the Rally Foundation's pasta dinner:

 

 

Post-op

Kait:  I forgot to write after Jake's post-op appointment with his surgeon!  The surgeon's assistant removed the very thick bandage from Jake's leg and we were pleasantly surprised by how it looked.  I was expecting a gruesome sight, but it actually looks pretty clean.

Jake sat up and we watched his little brain process what he was seeing.  His face changed from surprise to confusion.  He asked "why is there a crack in my leg?"  The worst part of the appointment was removing the stitches.  Jake was almost hyperventilating because he was crying so hard and had red splotches all over his face.  Randy had to hold him down so that he wouldn't kick.  Jake chose green (of course) for his cast color and we had to move him to a sitting position with his legs dangling to get the cast set properly.  This was also uncomfortable for him. 

Once the cast was dry we waited for the surgeon to come talk to us.  We had questions because we needed some clarification about Jake's overall outcome.  If you remember in the beginning, Dr. Oskouei told us that Jake would be able to do anything he wanted to do after his bone healed.  Well, this might not be the case any longer.  Dr. Oskouei admitted that he lost sleep over Jake's case worrying about getting the cadaver bone to fit without ruining his growth plates.  He was able to complete the surgery successfully, but Jake's left leg will never be as strong as his right.  And, we don't actually know what Jake will be able to do with his left leg until we get further into his recovery.  Once we can see how well his bone grows into the cadaver bone we'll get a better idea.  Our next appointment for x-rays will be on 5/8/13.  Please pray that Jake's leg heals properly.