Seth

Seth

Monday, August 20, 2012

Radiation over with and transplant tomorrow

We arrived at hospital last Tuesday for admission. Sienna was required to come along just for a check up. We managed to get settled into our room by around 5:30pm. The following day Seth began radiation. It was an early start at the adults hospital were he was laid down in what resembles a Perspex fish tank with the ends missing. They then put sensors over his body to measure the amount of radiation he was about to receive. They then added sand bags around his shoulders and chocked him up with foam blocks to help keep him motionless. Once this was done, they lined him up with the beam and put another Perspex tank next to him. This tank had Perspex blocks of different thickness wedged in alongside each other. This is what the measuring was all about earlier in the year. The purpose of this is so that each part of his body regardless of the size gets the same amount of radiation. Once he was settled with a DVD playing we moved out of the room and watched him on a little monitor. They had one person at all times watching him for any movements. If he moved too much they turned off the beam. All in all if he laid fairly still it would take about 10 minutes for one side. They then stopped, went in and turned the tank around so the other side of his body caught the beam and they started again for another 10 minutes.  Seth had to do this routine twice a day for 3 days straight. Seth suffered from nausea, tiredness, leg pain, an aching jaw and itchy skin. He was dosed up on pain meds and anti nausea drugs so it was bearable for him and he got through all six in remarkably good shape. This took us through to Friday and then Saturday he was given some very strong chemotherapy called Etoposide which went through in four hours. By the end of the infusion he was feeling quite nauseas and looked awful. Once again they just upped his anti nausea drugs and he picked up again. Sunday they started him on a 24 hour infusion of an antirejection drug. Which is still going through right now. He had a bad night last night with vomiting and diarrhea and is quite tired today. He has stopped eating most things now and is very reliant on his feeding tube to keep his nutrition up. He is in a positive mood and is in good spirits for the most part. He is sewing a cushion, playing games, listening to stories, watching movies and even participating in school lessons. I have been really surprised at how well he has remained throughout some of the worst treatments possible. The radiation as I understand it has now killed off his body's ability to make new bone marrow cells. It has killed off cells where chemo can't reach. The chemo he had after radiation was to clear out whatever cells were remaining in his marrow. The anti rejection drug called cyclosporine is now suppressing his immune system so that he won't reject Siennas bone marrow. He is now officially incapable of fighting off any kind of sickness. He has no cells to fight and what little fight he has left has been suppressed. 
Tomorrow is the big day and Sienna is starting to get really nervous. She talks alot when she is nervous about what is going to happen. She told me last night on the phone that she was feeling scared. She has been kept home from school all week just to keep her safe from catching anything as she too had caught a cold. Sienna is required to come in very early tomorrow to get things underway. The marrow will need to stay in the lab a bit longer as they are different blood types so they want Sienna to be done first thing. Seth will receive the cells by the afternoon. 
Seth has a rest day today which basically means that he doesn't get any chemo. He seems well prepared for tomorrow and just glad it has finally come as am I. 
Taylah will be joining us tomorrow at the hospital as we don't want her worrying all day at school. She will be able to spend time with Seth beforehand and we don't want her to feel left out of what is a big event for our family. She has been much happier since we made the decision to have her with us at transplant and I feel it was the right choice to make. I will update again after Tuesday is over with. 

13 comments:

  1. We're praying for all you all, and hope that God's love and care will continue to carry you through each day. The way that you face the many challenges that come your way every day is humbling and inspiring - we are with you all, especially Seth.

    With much love,

    Luke, Julia, Eva and Liam Barger-Bos
    (juliabb@optusnet.com.au)

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  2. Thinking of you all for tomorrow x Love Joel, Margy and kids xxxxxx

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  3. Sending you lots of love and praying for all your family Peter and Michelle Boon and family xx

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  4. Thank you so much for your updates Ali! All my love and prayers for your entire family! Sending lots of love and hugs xoxoxox Katie Sawell

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  5. May Our loving Father give you the strength, support and courage that you all need at this important time in your lives.
    May the hands of the medical staff work efficiently and correctly with Seth. To help heal him and cure his pain. For Sienna, we hope that she has been healthy, May God be with her as well. For Taylah the big sister, watching all this take place, who also needs a cuddle as her brother and sister prepare for one another health.

    With love to you all
    Irene so

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  6. Thoughts and prayers for your lovely family for tomorrow Ali, Love from Jem, Rose, Harry, Jack and Lily Stone xoxox

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  7. All our thoughts and prayers are with you all for tomorrow. What a battle, but the soldiers have been well prepared. Fight on loved ones! Rhonda and Gary

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  8. Love to you all and praying tomorrow goes well xxoo

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  9. Our thoughts & prayers are with all your family for tomorrow especially Superhero Seth <3 hoping & praying all goes well for Sienna too! What a gift to give her brother :) May our God keep you all in the palm of His hand. Much love, Wendy xxoo

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  10. Praying with all our might. xxx

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  11. Thinking of you all and praying that God gives you the strength to get through this and that the transplant goes well. Lots of love from Ari, Ingrid, Candace, Milly, Acacia and Chloe ~xxxxxx~

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  12. Thinking of you all today and hoping that the transplant is progressing smoothly. Praying for a successful outcome and quick recovery for your very brave children. Much love Adrian, Julie and family xxx

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  13. Our thoughts and prayers are constantly with Seth and your family, especially today. God bless, love, Darren, Linda, Jessica, Caleb, Micah & Caitlin Brown xx

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