Scott & Sunny

Scott & Sunny

Thursday, March 6, 2008

Puff the magic dragon

Another Thursday and you guessed it another day at the clinic. Scott's counts were good, he had an anc over 8000 due to the steroids, platelets and hgb both within normal range and a higher than normal white blood count. This has me a little spooked but nurse Vikki told me not to worry. His biliruben is also a little high again, hopefully it will come down within the next two weeks or we will, once again, be facing the dreaded 'half dose'.

He also had Pentadamine, the breathing treatment which should protect his lungs against a particularly nasty form of pneumonia.

Here he is, looking mighty pissed off, puffing up his breathing bong ...

He is definately out of sorts today, thoroughly fed up with this whole cancer experience, moody, withdrawn, tired, aching from chemo and just mad at the world.

Sadly one of our little friends is in intensive care right now. Little Kaylie had only just finished an aggressive protocol for infant ALL when she was taken ill with a severe allergic reaction, probably Stevens-Johnsons Syndrome, and likely caused by the drug Bactrim. She may also have aspergillus, a type of fungal pneumonia which can be difficult to treat. She is a beautiful little girl and her Mom and Nana were the first people we met when Scott was diagnosed. So we spent some time with them up in intensive care, it's heartbreaking to see Kaylie on a ventilator and so ill, I know Scott found it a little scary, but still, we needed to see Kaylie and her family and Im so glad we did. Hopefully the next time we see her she'll be making big steps in the right direction. Get well soon Kaylie!

Also our good friends Susan and Taylor dropped by to see us which was wonderful. You might remember me talking about them before, Taylor was diagnosed the same day as Scott with lymphoma. Well believe me, you would never know it! She looked a picture of punky loveliness, all radiant and glowy with lots of multi-coloured hair, which matched her tartan mini skirt just perfectly. She gave Scott a Valentines 'Shining Star' dog and he could hardly make eye contact with her without blushing. SO cute! It now has pride of place on top of his playstation. Thank you Susan and Taylor. We love you to bits!

Well must go now and try to cheer Scott up a little, and please, keep Kaylie in your thoughts.

Thank you.


christine said...

It's no wonder Scott gets 'out of sorts' sometimes - who wouldn't? He's had to put up with such a lot - and lots more to come - enjoy things when he's feeling good and help him through it when he's not - it's what parents are for.
lots of love

christine said...

And yes we'll be thinking of Kaylie and her family - send them our love - and hope shes out of intensive care very very soon.

Tisha said...

Stephanie and David,

Thank you for coming to see Kaylie today. Your visit meant a lot to us. It was nice to be able to talk to someone other than doctors and nurses for a change. The food was great and Kaylie is sleeping with her pig under her arm. We hope Scott gets to feeling more like himself very soon. It's nice to have good friends like you guys during this time. Thanks again.

Patti, Tisha & Kaylie

Anissa Mayhew said...

I'm sorry to hear that all the crap is catching up with Scott. It's stuff no kid should have to deal with, but even with the grumpies and frustrations of it all Scott remains an amazing young man. I hope that I can convince you to let me come steal you away again next week. Want to watch a bunch of crazy women get tattoos next Monday??

We are praying for Kaylie too, it's devestating to know how she is struggling. Thank you for the update on them.


christine said...

That picture of Kaylie came in after my last responses and I just have to say what a beauty she is - I really hope she pulls through very quickly. I will parya for the whole family.

Laura said...

I will definitely keep Kaylie in my thoughts and prayers and hope for a quick recovery.

I'm thinking of Scott too - what a day for him! I hope today is a better one.

Sending Smiles, Angel Laura