Wednesday, July 16, 2008

One step forwards and a whopping great thump back down!

Well, all in all it has been a shocking week. As many of you may by now know, the news from Josh's scans was completely not what we were hoping for or what we expected. There is a "hot-spot" (medical term for and area of contrast uptake ie. Neuroblastoma) in Josh's lumbar spine and in some soft tissue around the area. This is a new site, believe it or not there actually was a couple of parts of his body not filled with NB apparently!

I was so shocked as I though it would all just be routine although that annoying little voice in the back of my mind told me otherwise. Peter and Anika drove up that night (Wednesday) and we all crammed into our RMH room. The next morning Joshy and I had to be up at the hospital to get admitted at 7am for his Myringoplasty (replacing ear drum) and it was so hard to go through with it after the news the day before. The op was fine but Josh did not wake up for a good 24hrs afterwards and hit oxygen sats were VERY low so he was on oxygen until that night. He also spiked a temp of 38.5 which as all 3B families know is a bad thing. It righted itself after a stint on the drip and some pain relief and was probably related to the cold he had caught a few days prior.

I spent a horrible night listening to all the other kids in the room in pain and having procedures done while Josh slept completely oblivious to it all! I slept in bed with him which was actually really nice (if a tad squashy). He woke up and ate brekky once he'd had some Oxycodone and we took him back over to RMH at about 11.30. He then announced he needed a Maccas fix so we headed to the nearest McDonalds to gorge and panic as he sped around like a lunatic on drugs and coughed like an old smoker in the freezing playground. All rugged up we let him have 10mins to be a kid before we bundled him home. Later on in between downpour, we went for a walk to the park.

Saturday morning we headed to AQWA as we had never been and as we suspected. the kids LOVED it! Of course the main attraction was the cafe and the kids had a blast sitting on the travel belt in the underwater tank eating chips and ooohing and aaahing at all the "sharkeys and stingways!" They had a great day but still fought non stop!!!

Sunday morning after a very long night of nightmares for Josh, he was sleeping upstairs with Pete watching him and Anika and I were downstairs eating brekky when a very familiar and very beautiful face popped up! There outside the door was Laura!!! This may not sound too amazing except that she had started the five hour drive to see us at 3.30am and was prepared to turn around if we wanted family time! What an amazing friend. We were SOOOOOOOOOOO happy to see her, I was just too overwhelmed! After packing our things, we headed off to the zoo on the way home where, as usual, the kids were completely in their element. They loved having Laura with us and it was so special to share that time with her (thanks darling and you too Laught). Finally we left Perth at 4pm and began the long drive home! All in bed by 11.30pm and on to the next challenge the next day!

Aaron arrived on Monday morning and the kids are so excited to see him although they all bicker constantly. None of the kids is aware of what is going on and we are awaiting the next lot of scans to confirm things before we tell Aaron. Josh I think has guessed what is going on but true to our word, there will be no more chemo, no more NG tube or broviac and no more hair falling out. He will be here as long as he is meant to be and we will not try to prolong his life to make us happy. That is the beauty of the situation, there is no hard and fast rules, you do what is right for your child and your family. Other kids probably cope mentally with the chemo better so it would make more sense. I think we have made the right choice for Josh.

Josh starts school on Tuesday and it will be such a milestone for us all! Anika feels very indignant that she isn't heading off to kindy too, but her time will come all too soon!!!

Thank you to everyone who has been so wonderful and supportive, I am very grateful to have such warm and loving people around us at this confusing and difficult time for our family. We are looking forward to having a huge birthday party for Anika in five weeks and an enormous one for Josh in November god willing.

Love and magic to all of you. Hug your family just a little tighter and a little longer and NEVER be afraid to tell people how much you love them, I have learnt this from the wisest four year old I have ever met who tells his mummy every day how much he loves her. I am so lucky he is mine!


1 comment:

Colleen - Kaitlyn's mum said...

What a beautiful little boy.

Thinking of your family at this devastating time.

Colleen - Kaitlyn's mum