Last day of chemo!

Just a short post to let everyone know that Jake received his last chemo infusion today!  It only took a few minutes and now he is done!  Oh happy day!

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!"‪

If the boot fits...

Jake had an appointment to see his surgeon this morning to get a new boot for his leg. He has x-rays to make sure that the screws and plates are still intact, and everything looks "as expected". There hasn't been much healing yet and I guess there won't be much until he finishes chemo.  Unfortunately, the chemo stunts the rate of healing.   
He didn't have to get a new boot, but they did make some adjustments to his to try to make it more comfortable for him. Jake still wanted to take it off on the ride home so I guess it's just going to be something we struggle with until he can walk (sometime in November).
Jake is feeling pretty well today and we are thankful for that. Please keep praying for our baby...we know it's helping.

Last night, there was a fundraiser for us at Classic Bowl in Rome, GA.  Jake's counts were high enough for us to be able to attend and we had a blast.  Great family and friends were there to support Jake in his fight, as well as to bowl!  Here is a link to the blog that the photographer posted last night. 
http://aprilingramphotography.blogspot.com/2013/07/a-benefit-for-jakejakes-fight-against.html

Didn't she do an awesome job?  In spite of all the bad we are still making good memories to last a lifetime.  Take that cancer!

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.