Monday, 16 July 2012

Stem Cells and the Dreaded High Dose Aftermath

We knew it was going to be bad, but had to wait until it happened to know just HOW bad. And we certainly know now. Oscar is suffering terribly - I actually want to spare you some of the more gruesome details, you just shouldn't hear about kids experiencing stuff like this. It is still all within the limits of "normal" side effects for this type of treatment, which is the one thing we have to be thankful for, but it is difficult to be thankful for anything looking at the distress our poor wee man is in these days.  You can see his deterioration in the pictures that follow...

Frozen stem cells emerge from the container
Oscar receiving stem cell infusion
Oscar received his stem cells on Monday 9th July afternoon, and was sick that evening. Up until this he had been well, really well, full of fun and cheeky smiles.  Here he is doing the very important job of punching holes in paper for Valerie...
"Mummy, I'm busy!" - when I tried to take this photo of him (Monday 9th AM)
He received more stem cells on Tuesday morning, and got just a little bit sicker...
Tuesday 10th July
Thursday 12th July
When we got up on Wednesday morning Oscar was like a completely different boy. Feeling very poorly, lying around, not talking or eating. He was getting codeine for his pain, paracetamol for his temperatures, anti-sickness medications, several antibiotics and TPN (nutrition straight into his bloodstream). Things went downhill until Friday, we had to move from codeine to oral morphine for the pain he was in. You probably all know that chemo kills "fast dividing cells" which targets the cancer, but other fast dividing cells include your hair follicles, skin, and inside of your mouth and tongue right down through your digestive tract to your bottom. So the inside of Oscar's mouth has broken down, it is red raw, which goes right the way down through his stomach to his bottom. His stomach is swollen with gas and mucous, and he is having awful cramps, diarhoea and vomiting. 
Saturday 14th July
Things hit a new low on Saturday - we had been removing the mucous etc from his stomach using a syringe attached to his feeding tube (which was bad enough) - but this turned to pure blood. He has mucositis, which is "the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy". He is drooling - thick mucous - which can only be compared to egg white. His insides are so raw and broken down that they are bleeding, and we are having to remove this blood from his stomach, while still administering liver medication on its own straight in. I just cannot imagine the state of his little insides, never mind the PAIN our poor Oscar is experiencing. He spent most of Saturday crying and staring at us with big wide frightened eyes - HORRENDOUS. Sunday was more of the same - a total nightmare.

Monday 16th July
Today (Monday) we moved from oral morphine to a continuous slow infusion of morphine, 24 hrs/day. I really hoped this would be the end of the significant pain, but I don't think we are quite there yet. He still seems uncomfortable, and his sleep is very restless. He seems agitated and is whimpering. He is starting to look quite swollen, with all the fluid he is retaining.  Stephen and I discuss the possibility of this being the worst day over, at the end of every day. We hope each morning that we get up that we see signs of him turning that corner. So come on stem cells, do your job and make tomorrow that day!


  1. Stay strong wee Oscar. I'm ten times your age and I'm gonna be getting a stem-cell transplant later this year and I hope that I can be as brave as you.
    Sending you and your mummy and daddy and your wee sister lots of love, huge and smiles.
    AilĂ­s Corey xxx

  2. Get well soon wee man see your face every morning on my way to work and often think of you. Had a word with him upstairs and stem cell is gonna work you will turn the corner soon and be a happy pain free little boy again. XXXX

  3. what a champion. reading that makes you see how silly and insignificant life's "issues" can be.

    You're going to be one spoiled wee mucker when this is over kid.


  4. Get well soon Oscar.My thoughts are with you and your family. All the best from the North Coast.

  5. All thinking of the wee man. Legend. Hopefully the pain and gain are directly proportional in this case.

  6. Please God he'll turn a corner soon. My thoughts and prayers are with you all, Emmaxxxx

  7. Think of what you, your mummy, your daddy and Isy are going through every day. Very humbling to read this - it makes you realise that the small things that we all get hung up about from day to day mean absolutely nothing at all.

    Get well wee man, you've got the world on your side. May God help you beat this terrible disease. xx

  8. I'm hoping as I write this that today is the turning point. God bless you all.

  9. Praying for all of you you at this difficult time God Bless xx

  10. Reading this is bringing tears to my eyes totally.i hope wee Oscar turns a corner and comes through..I wish you's all the best with this.
    Poor wee man shouldn't have to go through all this pain but I really hope he gets better..

  11. Hopefully tomorrow is a better day guys, thinking of you all- stay strong and keep smiling Oscar xxx
    Aidy and Cathy

  12. Get well again soon Oscar you are an inspiration

    god Bless you and all your family and friends

    Kerr smiling wee man xxx

    Jim in Glasgow