Stormy weekend-busy week (radiation #15)

It's been a stormy weekend. We lost power all day Saturday before it finally came back on at 11:30pm. Sunday we had power but no internet. So, sorry for not updating Ben's site. The internet just came back on now.

Ben has been coping well with the treatments so far. He's had 14 sessions of radiation to his head (it's difficult even to type this). The left side of his head is where they aim the radiation and it is becoming more and more red from the exposure. His hair is starting to fall out but very slowly and not too noticeably. When he was undergoing treatment for leukemia, his hair would fall out in bog clumps. Much digerent this time.

This week, Ben has his daily radiation treatment again starting with Monday at 8:30am. The inhaling pentamidine that I mentioned for last week was actually for this week on Tuesday. We'll see how that goes. He gets tired sometimes but so far seems to be tolerating the chemo and radiation well. I always wonder if he doesn't react negatively to this treatment, does that mean it's not working? No. I think he's just a fighter and is able to take all these things that are being thrown at him. I remember when he was 4 yrs old, he had to have methotrexate, a strong chemo drug, go through his veins on a

regular basis but you know the IV bags they use are usually small. He had a 2 litre bag go through his little body in less than an hour. And this would happen very often. Not to mention all the other chemo etc that he endured. How he's doing it all over again but adding the 33 sessions of radiation to his head. When I had his old website up during his leukemia, the amount of needles he had received by the end of the treatment was up to 412. He had also had over 40 bone marrow biopsies. That's over 40 times the doctors had to dig into his hip bone to remove some of the marrow to test it for leukemia. If that's not being a warrior, I don't know what is. He really has been through so much and now he's doing it again.

Staying positive is something we've learned from him. He does not like to see anyone around him be sad or stressed so he does what he can to calm everyone. Mais qui s'occupe de ce petit prince? He must have a strong inner peace to be able to calm those around him while maintaining calm for himself.

Living one day at a time is something we've all done for way too long and is actually diffcult to do, especially under these circumstances. But, we don't have a choice so we push on.

Tomorrow, Ben wants to see the vice principal of his school to see about going to school and how things could work since he will have to go to radiation everyday. Ben's #1 concern is continuing his life normally. He wants to go to school, see his friends and be a regular teenager. I don't blame him at all.

MERCI everyone!!

picked some apples from the tree today

8 Comments

ROSE

8/30/2015 06:23:38 pm

Crazy stormy weekend, but you managed to get all those apples today! What will you make?

Ben, you are almost halfway with the radiation treatments! Continued positive thoughts for you and the family as the days continue and many more normal days ahead for you all. xoxo

FRANÇOISE

8/30/2015 06:58:51 pm

Bonne semaine, Michel, Pam, Ben et Stéphanie.

Yummy looking apples ! Perfect school snack. It sometimes feels unreal that Ben's body has to go through so much again. It will be nice when those 33 sessions are over. Hopefully, Ben will be allowed to be at school as much as possible with the treatment. People around the globe are praying for him. Lots and lots of love and big, big hugs.

XOXOXOXO

MARTINE

8/31/2015 08:19:53 am

Good weekend to stay home and enjoy the candle light. Thanks for the apples !! The animals and I are loving them ! I wounder if you should make something before Ben eats them all :)

It is hard to believe, and even harder to accept , that Ben has to do this again. He is such a sweet happy go lucky guy. He stays strong for the family, but it has to tough inside.

You are the toughest kid I've ever known Ben. You never wanted this, but you handling what you are stuck with, with such courage!!

I love you mister !

HAILEY AND LORI

8/31/2015 03:40:57 pm

Hailey and I read your blog every day to see how you are doing. Your strength and courage are so inspiring and we are praying every day that you get better. You have lots of people sending good vibes your way and an amazing family. Keep ]ghting, Bon courage xo

COLLEEN

8/31/2015 05:15:57 pm

Ben, you are so brave and strong. Such an inspiration! Your family too. We are praying so hard for healing and peace. These kids lead us and we follow.

FRANÇOISE

9/2/2015 12:07:11 am

Happy Tuesday and good morning, Michel, Pam, Ben and Stephanie : I pray everything goes well with the inhalation of pentamidine and that it does a good job of protecting Ben's lungs. Lots of love and big hugs. XOXOXOXO