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Yes...this is ALL about me, and mine. Marvellously self indulgent, feel free to tell me how splendid I am, leave comments, nice ones please, I have little kids and teenagers who can do the rude stuff. I am a grandma, to the glorious Joshua, I'm allowed to look frazzled and weary, I earned it. The older I get, the more I see that hanging on and being patient is worth it! They ( whoever 'they' are) are so right when they say you never know what is around the corner, it isn't always an articulated truck! It is vital to make the time for making memories, friends are the greatest treasure, I love mine. I am rich!

Saturday, September 20, 2008

So you think you're tough?

Sometimes, when we feel as though we're pretty good, doing well, standing tall, something comes along to show us just how far behind the real heroes we are.
Meet Seth, not my Seth, this is baby Seth who is just over a year old. When he was 11 months old his mum, Sara, took him to the G.P because he kept throwing up, he was generally unhappy and this had been going on too long, so she took him to find out if he had a bug, or an allergy or something. What they found was that he had a 10cm tumour in his liver. Cancer.
That word sends the terrors through most of us, the mere mention of the word will cause us to hold our breath and pray.
Seth has cancer, Hepatoblastoma to be precise.
Sara and Seth are home at the moment, though that is a precious treat lately, Seth has to travel to Exeter, Bristol and sometimes Birmingham for treatment.
Sara and her husband Andy have 4 children, Jack, Amber, Aimee and Seth and in 12 weeks a new baby girl will join them. So Sara is 28 weeks pregnant with baby number 5 and is travelling the country with Seth and often the other children in tow, sometimes they live in the Ronald MacDonald house in Bristol, when Seth is an inpatient for his chemo.
He has had chemo ( 2 rounds so far I believe) and 11 days ago he went to Birmingham for surgery, the tumour showed it had shrunk and so they went to remove the remainder of the tumour. When they opened him they found that the extent of the tumour had not shown clearly on the scans and 70% of his liver had tumour in it. So 11 days ago this baby had 70% of his liver removed.....





He has amazed everyone from the very beginning of his journey with cancer, when I went to his house today he was drinking a bottle and then crawling and behaving just like a regular 14 month old baby....this was taken yesterday ( I think!)

Look at that boy!!
He still has such a journey to travel, still has chemo and endless treatment, he is a star.
I asked Sara how she copes, being pregnant and all the driving the appointments, the other kids, the every day stuff and then...well then the emotions ... I never ever want to know how she feels, I hope that I only ever have to imagine and sympathise and feel useless.
She said that tiny things send her over the edge and she is pretty sure that when she hears he is OK, when they get the all clear, when her new baby is born in 12 weeks ( or sooner because she has been known to pop those babies out unexpectedly a little early I think) when life is able to just happen, that's when she'll be sad, that's when she will allow herself to think how absolutely horrific all this is.
Last week, after another appointment, she went back to her car and saw a traffic warden writing her a parking ticket....she said that made her lose it ( as it would all of us!)
In the UK we don't have to worry about medical bills, what a huge blessing not to have to think about how much that operation would cost, how much the chemo, the IVs the drugs, the various doctors. They don't have to worry about that but they do have to pay the extortionate petrol costs, Sara has a car like my old minivan, a 7 seater that is not new, that is heavy and necessary to carry her family. I am pretty sure that every time she goes to Bristol, if her car drinks petrol like mine did, it costs her £50-£60.
I went over today and she said that they pretty much live on cereal because everyone is just too tired to cook, who has time to run to Asda and buy dinner? Who can even think of what to eat when you are worrying about your baby having most of his liver removed ( and his gall bladder at the same time) He now can't take more than a drop of tylenol for his pain because he has no liver to process it....he was having less that 2mls of tylenol / parecetamol after his surgery, he now has a new Hickman line in and can have some heavier meds but everything is still very precise, if his liver can't deal with it, he can't have it. To see him crawling and pulling himself up, laughing and playing is incredible, I looked at his scars and his tiny body is just covered in holes and scars, the big one is almost healed already, he is amazing.
I wonder how an adult would be coping with what this baby has already been through, I am sure the recovery would be slower and more painful, babies bounce back so well, he is particularly incredible.
Sarah, I meant it when I said that if you need me, just call ( and I also sort of meant it when I said but please don't ask me to have the kids!! If you need that though I will do it, I may weep because I am so old and they are so young and I love them but being able to find which house was yours now you have moved by standing in the street, listening and then following the noise ......well you know, and I do appreciate that you had 3 extra little boys there as well...are you CRAZY??)
If you want me to come and babysit one evening in your 3 weeks off before new baby arrives and if you trust me with Seth and all his tubes and pipes....I can do that.
I will bring dinner and try not to spill it in my car on the way over.
I will read Seth's FB page and most of all I will keep praying for him and you and Andy and those other beautiful little people you have.

Seth has a facebook page where you can be his friend, see his pictures and keep up with his journey, I think Sara should put a paypal button on there so we can pay for dinner or a DVD for the little ones to watch and be quiet, maybe help out with petrol costs and parking fees. Love and support is fantastic but sometimes people need a bit more than that and I would say this is one of those times.
The facebook is open to anyone who wants to join, the more the merrier.
I'm sure that there are many more people like me, who can't imagine what this must be like for you and your family, I am sure that many of us are praying for Seth and thanking the Lord that we don't know how you feel and I know many people feel as helpless as me, put a paypal button on your FB page ( is that possible?) and I hope that if you do, people like me can make a difference in a practical way, even if it's a couple of £s to buy some colouring books or a takeaway instead of cereal.
Little boys like this can make us see just how insignificant we are. How much we rely on others, how much we need faith and help from others. I hope that Sara, Andy and Seth never feel without support and love from every corner of the earth.
We're all watching this baby and cheering his every new step and we're watching his mum and dad and are ready to sit and let them have a damn good cry as soon as they hear that this baby is OK, because I am pretty sure he will be.






Blogger justLacey said...

Well, I am so happy that Seth I recovering so well and quickly. Also the liver regenerates doesn't it, so he won't always have to worry about what he can and can't take will he? He is a beautiful little boy and hopefully in time this will all only be a distant memory. I can still remember being worried sick before Nick was born. What was I to expect? In the end, it was all ok and I only think of it periodically now. Usually when he does something so normal and I think of how it could have been so different. Also when I read of someone else going through what I did. It brings it all back.
Get well baby boy and grow big and let your mom have only a distant memory of all this.

9:46 am  
Blogger Lost in a Secret Garden said...

What a sweet little thing, I'm so glad everything went well and hope he continues to recover well. Keep us updated, he & his family are in my prayers.

4:59 pm  
Blogger Jenn said...

There are no words. He is a tough little trooper - Chuck Norris has nothing on him!! And his mum - well, she's a pretty tough cookie too. The only thing worse than going through it, is watching your most precious child having to endure it, and not being able to take that pain upon yourself to protect them!
She is in my prayers, as is that wee Seth. Bless them all, those pictures had me in tears.

8:19 pm  
Blogger LosingSanity said...

A tough little guy indeed. I hope and pray that he continues to heal and get better and that the family is able to look forward to brighter days!

3:07 am  
Blogger G said...

Jenn said it best...the worst is watching your precious child go through something so awful. I cannot imagine and pray I never have to what she is going through.

He is an inspiration. To fight. Keep fighting. To That smile is room-brightening.

7:38 pm  
Blogger Michelle-Ann said...

Just when you are thinking you are having a bad day....whew...

What a sweet child. I will pray for his recovery, as I will also pray for his Mom, Dad and 3 siblings. This has to be sooo hard on them all.

My hugs to all of them!

11:42 pm  

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