Monday, March 23, 2009

A full medical update (another YEAR of chemo).... a special thank you to Steve and team (i miss you guys so much) and thanks to Jordi's family!


12th March 2009


Hi all,

Yesterday was such a busy day, radiation went very well.

Ray and I then went to see Professor Janet Poole at the JHB General Hospital. The mission to get to the children's oncology is awful. We waited 25 minutes for the lift up to the fifth floor, then had to fight our way to the next lift through the crowds of people, and then follow the yellow/orange line, up to the 9th floor. In total it took about 35 mins from time of parking to arrival at oncology. The drive was about an hour and fifteen minutes.... the walls are yellow like an old chain smokers bedroom - the kind where you picture a painting being moved and THAT spot is white - it is old and dirty (not oncology the rest of the place). Then you walk into HELL, about 14 little beds in a row with tiny little people laying sick on drips, with no hair, the walk up is a pleasure compared to what you see at arrival. Let's just say I hate going to the JHB General Hospital and guess what, I GET TO GO FOR A WHOLE YEAR!!!!! We discussed the following with Dr Poole:

What is the next step after this round of 6 weeks of chemo and radiation:

It is a year of chemo at the JHB GENERAL HOSPITAL. That decision is ours, mmmm, to think that we have a choice. The type of chemo is VINCRISTINE AND CARBOPLATINUM. The reason why it has to be at the Gen is because Dr Poole works daily out of the Gen and that is the only place she will see Jed daily. We could go to Donald Gordan but then we will see her only every 7 weeks as 7 doctors take turns there. As Jed has such a rare cancer and the treatment is not used very often we need to be near her. Jed will be treated as an outpatient and I will travel in and out daily. It will be about 10 days on and then a couple of days break and then 10 on again.... she will confirm later how it will work. Jed will have an operation to insert a port into his chest, this will be for the chemo drip (i'm told by Jordi's mom and Soccer Gwan that this is not a big deal and only takes about 30 mins). This thought sickens me but like Jordi's mom said to me, Dr Poole is fighting with you. She really is an amazing professor; she actually spoke to the doctors in America (the ones I stalked) and took their advise on the treatment plan. I still have to work out the drive in and out, and how I will manage if Jed is vomiting. I will look into choc houses or hire someone to help me etc.

We then asked about the Quantronics machine:

She told me it was a load of rubbish. We may still think about it but at this stage Ray and I will listen to Dr Poole. As she said Jed's tumor is in 3 nods and we need to fight it aggressively.

We asked about the Brain Swelling:

She explained that the symptoms of brain swelling is the same as when the tumor is at full size, leg and arm paralyzed with terrible headaches in the morning and vomiting constantly. Jed does not have this (thank you Lord) Basically Jed does not have internal swelling; his is just his head that is swollen on the outside from the radiation (like bad sun burn).

We asked about the constipation and the vomiting:

She prescribed Lactose twice a day and increased the nausea medication.

We asked about diet:

Basically a balanced diet is best, Jed has lost 400 grams in the two weeks and she advised us to use pedisure three times a day and try get him to eat little bits. He loves the pedisure so that is great. As for food well he eats VERY little now. She advised us to stay away from salt and chips. Mostly cancer related to diet is not relevant for children under 5 years old.

I asked once again, what caused this (nag nag nag) ?

She said there is no answer, 2% of these tumours are hereditary and the rest are just out of our control. Not diet related, no fall could have caused it, environment, stress is not relevant!!! So we will never know the answer.

I'd like to end this mail with some positive updates. We received a lovely gift from my boss, Steve and the CPT team. I was so touched by this. Jed loves the Ben10 jacket! On the way home from the hospital Jed had the jacket on and just before we got home he started screaming for me to take it off, I couldn't understand and thought that maybe he didn't like it.... so I took it off and just in time, he vomited all over the car, mess every where, and then he said, "okay mom put my jacket back on now!"... so cute! He slept in the jacket. The Ben10 bag is also so cool.. and thank you for thinking of me... I now have at least ONE reason to bath (don't even dare comment on that!)

Then to Auntie Gen, Uncle Mike, Shane, Jordi's mom and dad, I don't know how to thank you all for the love and support you continuously provide to Jed and I. Your own plates are so full with Jordi's cancer yet you still find energy to visit and surprise my little man with the awesome motorbike. He was overjoyed and he can't stop talking about it. He is a huge Auntie Gen fan and can't stop asking me if he can play with "that girl who bought me my bike".... I ran behind the bike most of today and it was wonderful to see him outdoors and having so much fun. It is so cool as it is battery operated so even when he is exhausted from treatment he can still ride it. I thank you from the bottom of my heart!

With lots of love and a request as always for prayers for Jed, Jordi, the Gwans (Soccer Gwans liver tumours have shrunk - praise God), and for all the precious little ones at the JHB General Hospital.

How life will change for me over the next year, it scares me and breaks my heart so please pray for strength, faith and persistence for this broken mom. It is so strange as no matter how often I hear the facts of Jed's cancer I still believed that this was almost over and life would maybe return to semi normal. I pictured myself in a little half day job, in my own little place with friends around me and going to kiddies parties... well bla bla bla bla.... this fight continues....!

Attached is Ben10 the biker dude (new Jacket and bike!)

Love always
Bon and Jed x x x

6 comments:

  1. Hi Princess,

    Im thinking of you and Jed. Im saying a preyer for boh of you. I will be donating R300 towards little man's madication and please you can spoil him all you want princess.

    I wish you strength and continued faith in God because only he knows and has full controll of Jed and your's recovery.

    I wish you days of sunshine in your heart and a full recovery, My heart is with you all the way. May God be with you in this journey.

    Love always
    Princess Hazel

    ReplyDelete
  2. I am in fact thankful to the owner of this site who has shared this fantastic piece
    of writing at at this place.

    Feel free to surf to my homepage - http://provillusofficial.blog.Com/

    ReplyDelete
  3. Thank you for the auspicious writeup. It in fact was a amusement account it.
    Look advanced to more added agreeable from you!
    However, how could we communicate?

    Feel free to surf to my homepage; www.xfire.com

    ReplyDelete
  4. Good day! This is kind of off topic but I need some help from an established
    blog. Is it hard to set up your own blog? I'm not very techincal but I can figure things out pretty fast. I'm thinking about setting up my own but I'm not sure where to start. Do you have any points or suggestions? Many thanks

    Feel free to surf to my webpage ... http://www.storylink.com/blogentry/160887

    ReplyDelete
  5. Currently it sounds like Movable Type is the top blogging platform out there right now.

    (from what I've read) Is that what you are using on your blog?

    my blog post: http://thuvuwwa.skyrock.com

    ReplyDelete
  6. I used to be able to find good info from your blog posts.


    Here is my web-site - hoidtreatment.webs.com

    ReplyDelete