Tuesday, April 28, 2009

Not Sure What to Say

I really can't think of a way to summarise the diverse week we have had. The most outstanding feature would have to be the extremely special visit we had from one of Josh's favourite people in the world. In fact, I would have to say one of all of our favourite people in the world. This very very special friend knows who they are and (I hope) how much they mean to our family and we are deeply touched by the lengths they went to to be there for us at this time. From the bottom of our hearts, thank you and we will love you always for what you are to Josh and what you do in this world.

I also need to thank everyone for their support and caring, especially to the other families who are living in this nightmare themselves but still take the time to think of us, check how we are doing and remember good times with our boy. I was so touched to get a message from beautiful Vanya to offer her support and check in on us. For those of you who do not know, Vanya's incredibly beautiflu and brave boy James became the most lovely angel not long ago so for her to be thinking of us is just amazing. Thank you, what a lady!

We are feeling very frustrated right now with how things keep piling up on poor Josh in spite of our efforts to alleviate his symptoms. He has just gone on to 125mcgm of Fentanyl patches to help the pain and we have tried to use some tablet form laxatives to replace some of the 55-65mL of oily liquid he has to take daily. His reflux seems to be worsening and he is sleeping more and more with very little activity in between. There is no dire issue right now but it is not hard to see Josh is suffering and it is unbelievably hard to watch.

Other than that, we are just feeling so grateful for all the help, love and support we have been offered in the last year. I have to say that the first year was so terribly lonely but now I feel like part of a much larger family. We are approaching Josh's second year since diagnosis on 16th May. In some respects, I think there is something keeping Josh with us just long enough to see the anniversary out and of course it would be very nice to have one last Mothers Day with him. The original diagnosis came the day after we spent Mothers Day 2007 with a desperately ill boy just adjusting to our second day at Hotel PMH. Last Mothers Day 2008 I was overwhelmed with how lucky we were to have Josh in remission and almost finished his Accutane treatment and watching the kids play on the beach as dolphins played in the bay. I hope this year I am not without Josh, the centre of my world.

Lastly I need to say a very big well done and Happy Birthday to the hilarious Miss Immie who just turned five! She is such a sweetheart and her family are just superstars. Love U Fee! Give "the bean" a kiss from me...maybe Jas had better do that for you Fee?!

Love to you all and trust me, if anything happens you need to know about, you will know.


1 comment:

Anonymous said...

My heart goes out to your family and Josh. I have just come accross your blog site and would like to let you know how touching Josh's progress is. We have probably crossed paths om Ward 3b as my daughter Jaime was there last year having treatment.