Walking along and...Slap!

Kait:
We're moving along in life, enjoying a beautiful day and, believe it or not, the fact that Jake had cancer is fading to the background.  Can it be possible to not think about cancer every second of every day?  Well, apparently it is possible to move forward with everyday tasks and activities.  We can actually go out in public without being stared at with "sad eyes".  Like today for instance, the kids are out of school for President's Day so we slept in, ate breakfast, and played a little.  Jake had a physical therapy appointment at 11am and we grabbed some lunch after at a new Mexican restaurant in town.  It's just me and the three kids since Randy, unfortunately, did not get the day off school.  Our kids are 2, 4, and 6 years old so you can imagine we are like a traveling circus everywhere we go.  Aubrey refused to sit in the highchair so a good compromise was to let her sit next to me in the booth.  To her this means jumping up and down and singing at the top of her lungs.  Jake ordered chicken nuggets...yes, at the Mexican restaurant.  He refuses to touch them and proceeds to eat cheese dip likes its water.  Ethan, the oldest, inhales eats his taco like a good boy.  In the midst of normal conversation, Ethan says, "Well, it's almost time for Jake to go to the hospital again.  The doctor said he has to go back every three months and March will be three months since he's been."  And there cancer goes, slapping me in the face again.  Yes, Jake is due for his six month post treatment scans on March 6, 2014, this is not news to me.  However, it is shocking to me that a six year old would be keeping track of this.  Instead of thinking about the next holiday or birthday he is thinking about his brother having to go to the hospital.  It makes me so mad that cancer keeps rearing its ugly head.  I want to scream, "Get out of our lives!  Get our of our minds!  You are not welcome here."  People tell me that it gets easier as time goes by, but I honestly feel that cancer will always be a part of our lives in one way or another.  I hope that eventually I will not be so emotional about it.  As of now everything I see about childhood cancer brings me to tears.  Doesn't matter if it's good, like a Make-a-Wish being granted or bad, like a child dying.  Everything that has to do with cancer is emotional.  Cancer is so evil, I can actually imagine it having a face with a look of malice.  Always trying to cause pain. 

Anyway, I have to get over the fact that I can't protect my kids from everything.  It's probably best to involve Ethan in Jake's appointments rather than hoping he'll be in ignorant bliss.  Obviously, he knows what's up and he is far from ignorant.  As far as Jake's healing progress, he is doing amazingly well.  We saw his surgeon on 2/4/14 and he was so pleased.  He said that we couldn't ask for better and that Jake is free to do any activities he would like.   He can be an active little boy again!  Jake's tibia has grown enough on both ends that if he were to break a screw or have a complication, the Dr would be able to fix it.  We know that there's a good chance Jake might break something in that leg someday and we are okay with it.  We refuse to limit him - we will never tell him "you can't" when he's been given this second chance at life.  At physical therapy, his wonderful PTs have been working hard to help Jake walk straight and without a limp.  He is gaining strength and is really starting to trust his left leg.  When he walks slowly you wouldn't even know that he had major surgery. 

[Click below to see a video of Jake walking.]

Post by Jake's fight against Ewing's sarcoma.

Randy is going to run his first marathon in March and is raising money in Jake's name for the Rally Foundation for childhood cancer research.  If you have even a dollar to spare, would you consider donating?

https://www.rallyfoundation.org/run/half-marathon-training/publix-georgia-half-marathon-marathon/rally-for-jake-randy-Russell
 

I am very thankful for where we are in life, but, most of the time it is hard to believe that this is our life.  I was thinking the other day that I wish I could go back to when Ethan was a baby so I could know what it felt like to hold him once again.  Then I thought to myself, would I be willing to relive the past year and a half just to experience holding my first born again?  God forgive me, but nothing would be worth going through cancer treatment again.  N.o.t.h.i.n.g. 

I know that there will be times like today where cancer and Jake's journey will jump to the forefront of my mind.  I will accept whatever comes our way, help others as we can, raise awareness for childhood cancer, and thank God every single day that our traveling circus is as noisy as ever. 

Jake's Journey video

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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. 

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.

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.