We are still home and loving it. We have been back to the hospital for check up visits. Seth was supposed to get chemo on Thursday last week but it didn't happen. The doctors were waiting on approval from the people conducting the study that Seth is on. Approval only happened Thursday morning so they were unable to get the chemo organised in time. We returned to hospital on Monday(yesterday) and while we were sitting waiting to begin, Seth came out in a blistery rash on one side of his head down his neck at the back and on the front of his neck. His oncologist came to see it and thought it may be shingles. He sent us home without chemo with instructions to call if the rash continued to increase. This morning, it had doubled in size so we will have to go into hospital tomorrow for the doctor to have another look and to advise us where we go from here and what it means for Seth's future transplant. I have no answers at the moment about how shingles will affect him or how they will treat them. I only hope they don't have to delay his transplant any further.
I would like to once again thank everyone who sends cards, letters, gifts to Seth and our family. I unfortunately have been unable to keep up with the thankyou's so I would like to express our gratefulness on this blog. We receive on average 1 - 2 letters, cards or packages a day. They are from as far away as Canada, England, Africa and India and of course all across Australia. They are from people we have never met and from people we know. They cross all generations from the very young to the elderly. They include photo's of families and letters about those families and gifts for our children and Seth. I cannot express how grateful we are to everyone who has taken the time out of their busy lives to let us know just how much Seth is in their thoughts and prayers. Our family is so very blessed to have so many rally around us. It gives us strength to continue this battle. Please know that every letter received is read by all of us and is kept in a keepsake box for Seth to look back on. Every letter is precious to us. Thank you one and all.
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| A bit of fun when all he would eat was twiggy sticks |
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| His favourite trick to play on nurses |
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| paint fight gone wrong with a mate |
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| sleepy after ng tube inserted |
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| A picture of mucositis on his lips |
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| Green wee after blue smurf drug |
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| You can do so much with a bald head |
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| Getting ready for Riboviran under his tent |
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| A face only a mother would love |
I have to laugh and cry at your post, and the amazing pics of our brave little boy, always with his amazing smile and sense of humour. Such awful news about the shingles, hope that all goes well tomorrow. All our love always xoxo
ReplyDeleteMum & Dad M
Thank you for the updates Ali, yes I along with Cheryl, I cry and smile my heart aches for you all. (I wonder how much the elastic will stretch). God knows why - we (me ) dont understand why but we must endure until the end is accomplished. We hope that it is not shingles and just a mild rash. May there be healing in the wings soon for you all.
ReplyDeleteWith love
Aunty Irene xo
My thoughts are always with you all, especially Seth, I love all your funny photos, especially the SPIDER on your head. Can I please post that photo on my Facebook Page and say something about Seth? I love scary things and have two rubber spiders above our front door to scare visitors. They work well, I've named them Seth One & Seth Two. I hope your mouth has cleared up for you, and know that's not a trick photo, thanks for the update, and the many photos of our big Super-Hero.
ReplyDeleteLove to you all,
David & Sue xx
Seth would be happy to share his spider photo. It was one of his favorite tricks to play on the nurses.
ReplyDeleteWhat a brave little man... I don't know what else to say, other than our thoughts, prayers and love are with you and your beautiful brave little Super-Hero!
ReplyDeleteLots of love,
Matt & Jess Kidston xxxxx