Sean Admitted

June 5, 2007 in Uncategorized by Sean's Journey | 6 comments

 

Thank you for your messages for Lexi’s family, I told Catherine of them, as she has flown down to Wellington for Lexi’s funeral today.

 

We spent much of yesterday (Queens Birthday Monday) with our friends the Pearce’s, leaving Cameron with them for two nights.   Catherine, Sean and I went and found a Sushi Train for dinner (guess who asked for that!)   Catherine took Sean up to the ward to be admitted just before 8pm.   All going well, his next night out of Ward 27B will be about 5 weeks away.

 

Sean started his TBI (total body) radiotherapy today with two sessions and another four to come over the next two days.   He has to lie on his back, straight and flat, with his arms in exactly the right position without moving for about half an hour on his own in a big room with a large machine making noises.   Anyone out there understand the challenge?   One of the lady therapists said she wouldn’t be able to lie still for that long and I think she was serious!   He did very well.   He really did.   At the morning session he was crying a fair bit and Catherine read him a story (“Horrid Henry”) over the intercom, but for the afternoon session he just took it in his stride and I think he went to sleep for a while, although he says he didn’t (we can see him on monitors).   I also read Horrid Henry, although half way through (when Sean has to be rotated) we realised that the intercom was no longer working and he had not been able to hear me at all.   The four lady therapists in attendance all said they had enjoyed the story though!

 

So, here we are back in Starship at the beginning of a challenging month. From this point on the drug toxicities increase as they seek to totally suppress his immune system and permanently destroy his bone marrow.   We are expecting his blood counts to drop rapidly.   About 5pm he suddenly started crying and complaining of a painful mouth.   Fast reactions from the nurses with panadol and he quietened and is sleeping now.   We have morphine charted and ready to go.   It’s 7:40pm.  It’s started.

 

Be awesome,

 

Mark

 

PS – It’s actually good to meet up with the nurses and staff here again, people we remember from when Sean was really sick last year.   We are very fortunate to have such good people around us.

 

Here he is on his TBI bench, almost ready to go.

1. 

   Sean's Journey on June 6, 2007 at 5:58 am

   Hi to the Edwards, well we're not really experts, but if you are looking for great Japanese, then Umi in thr Viaduct Basin is excellent (not cheap though). The Sushi Train I mentioned in the blog is also in the Viaduct area, just opposite the Tepid Baths. That place has very nice sushi, served on a train. Have you experiences a train before?

   Mark

2. 

   Liz Austin on June 5, 2007 at 6:43 pm

   What lies before us and what lies behind us are tiny compared to what lies within us….Emerson

   Keep Smiling
   
   Liz

3. 

   The Porters of NY on June 5, 2007 at 3:56 pm

   That must be very hard to lay still for that long but it's nice that your parents will read to you while it's going on. We're praying for you throughout your next two days of TBI.

   In Christ's Love,
   
   Aidan, Traci & Michael Porter
   
   Canisteo, NY

4. 

   Kristy on June 5, 2007 at 10:11 am

   Having to stay still that long would be pure torture for me. The thought of that makes me feel sooooooo clausterphobic (sp?). What a brave kid he is, my heart just goes out to him.

   Kristy

5. 

   Dianne on June 5, 2007 at 4:01 am

   Been thinking of you guys all day. Did you manage to get Sean some lego bases? If not, I'm hoping to come visit on Thursday and thought perhaps he could borrow what we've got (I think we've got 3 or 4). Sean you are a very very brave boy and extremely cute! Hope to see you on Thursday. We're praying for you all the time. Thanks for keeping us in touch. Lots of luv from the McCrowds! xxxooo

   PS. Really sorry to hear about Lexi. From photo's, she looks like a gorgeous little girl. Pleased that Cath could make it for the funeral.

6. 

   Edwards' family on June 5, 2007 at 3:20 am

   Glad you all had a great family and friends weekend, thinking of you ALL – in our prayers especially with this big month ahead. By the way..any favourite pics for Japanese in the city? Sam loves Japanese food, but we don't know much about good food beyond the North shore..
   
   Kim, Philip,Sam,Alex, Isaac.

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