Interview clip

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. 

Things you don't want to hear

From Randy:

I can't tell you how tired I am of these monsters....sure you're sick of me bitching about it...but you need to read this. Tonight I went with Ethan to visit Jake and Kait at Egleston....everything was okay while we visited. On the way out the room across the hall I could hear the child in there SCREAMING in pain....screaming for someone to help him (he is 10 years old)....Kait said he had been ...pretty much vomiting since they got there Thursday afternoon. We stopped and said hi to Colton (another Ewings fighter) and his wonderful parents Scott and Kristi. He has been in the hospital for over a week now with a blood infection and it in ICU (sedated and on a ventilator). He just got moved to the oncology wing today.  He pretty much spent his birthday half sedated, and is currently just trying to keep his head up and hold things in his stomach.

We can't sit back and just "like" statuses and pray....we have to do something. We can help end this cycle of pain. We can stop these kids' suffering....there has to be a better way. They are being treated with drugs that originated when Nixon was in office. Do you realize how insane it is that in a society where technology is moving at the speed of light that we HAVE ONLY ONE NEW DRUG to show for the past 25 years of research in pediatric cancers?

I want to scream sometimes...and get angry as f**k...tonight it took everything in my soul to not cry my eyes out when I got to the car...but I didn't want Ethan to see me like that. It's hard enough to know that he heard and saw the same things that I did tonight...and he's old enough to understand that it wasn't normal.

Why is this normal for treatment of these diseases....why do we accept these barbaric treatments for our children? Why is it okay to inject our kids with drugs that originated as parts of mustard gas (see origins of Doxorubicin)?

CHILDHOOD CANCER ISN'T CUTE BALD KIDS HOLDING BALLOONS....

I'm so angry right now.....

From Kait:  I am so glad that this is the last night of Jake's 5-day chemo.  5 days is a long time to hear sounds of crying, throwing up, screaming, and pain- and they aren't even coming from my kid!  I am so thankful that this time Jake is only crying is when he has to drink his medicine.  Of course he will cry in pain and fear when it is time to de-access his port tomorrow.  If all goes as planned Jake will only have his port accessed two more times...EVER!  I can't wait for Jake's healing to be complete.  Then maybe Randy and I can start healing our hearts from the agony we have been living for the past 10 months. 

 

We are watching a lot of movies, going to the playroom, and visiting the gift shop to pass the time and he is in a pretty good mood.  He keeps asking when Thanksgiving is because that is tentatively when he will be cleared to start walking again.  He says he is tired of crawling and doesn't like hopping on his walker because he isn't fast enough to play with his brother.  We are asking for prayers to keep the cancer away and specifically for complete healing in his leg so that he can walk in November.  We know there is a chance that it won't heal like it needs to, but we are remaining optimistic.  Jake says "hi!"‪