We had a nice week with Aaron here with us and it did Josh the world of good to see his brother. We didn't get to do much as a family due to Josh's pain and fatigue but we made several trips to Granny's and Grandma's to visit (where Josh could lie down as soon as we got there). The pain is really impacting badly on our family now and we haven't gone anywhere with all of us now for over a week. Peter took Aaron and Anika to the pool twice and we both took them to the beach for a swim when Joshy had a sleepover at Grannys on Wednesday. He has been rising sometimes at 5pm and often not getting out of bed at all. It is impossible to describe to anyone how hard it is to see your child in such agony and know the only relief they will ever get from it now is through death. I hope things do not get any worse for Josh as he doesn't want to be moved or have a bath and even wearing clothes can be too painful for him to bear now.
His pain relief has gone up to 100mcgm of Fentanyl and his breakthrough pain was being managed with 6mL of Oxycodone but now I an supposed to give him 30mL!!! How on earth am I supposed to get him to take that?! On top of the 35mL a day of laxatives that is! Yesterday I had to give Joshy a suppository to help him poop. No luck so this morning lucky Josh had me give him and enema which has also had no effect as yet. The next step is a trip to hospital and possibly surgery to remove the impaction. Something to be avioded at all costs. I have also got a script filled for Dexamethasone which may help him to be less drowsy and to enhance his feeling of wellbeing. Josh tells me just like before his original diagnosis "Mummy I don't feel good", it breaks my heart.
Anika also surprised me yesterday by saying "Mummy, I don't want Josh to die and I don't want him to go to heaven. I want him to stay here with me." So do I darling, so do I. We had a long talk about Josh not feeling pain anymore or being sick and how he would always be looking after her and how we could still see him in our hearts and in our dreams. Yesterday was all in all pretty crap!
We had a visit from my Dad and his friend Jan which the kids enjoyed. It was nice to see them and I know Josh really appreciates the effort people take to come and visit him when they can from so far away. Joshy also got a beautiful parcel from his special cousins in Jersey, Molly and George. He was so pleased and kept saying over and over "my cousins love me very much and I love them too", how sweet of you all Sarah, Rich, Molly and George, we love you too!
Smiles are quite rare now and we cherish every single one. Thankfully Fudge has been such a boon for us. Josh gets so much comfort from having him close and being loved by that little ball of fur gives him more happiness than anything we can do for him just now.
I would just like to take a second to reinforce what I am hoping for for Josh's Celebration of Life. I would really appreciate if everyone dresses brightly, it is a celebration of our lovely little man, not just a mourning of his death so no black please. Also we are asking for no flowers as they too will wither and die, instead help us save the lives of other kids by donating what you would spend on flowers to our Everyday Heroes Page so that Josh's legacy can live on in the kids who win this battle.
All our love to you all. Check out the scan I did of the articles in the papers for those of you not in Albany.----------->
Hannah
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