FRIDAY, JUNE 6, 2008

I really don't know what to think anymore. Mr. T has always bounced back from his chemo treatments but not this time. It's been a constant struggle trying to get him to eat. Finally one of the mothers here told me to try Boost drinks. As soon as the Dr. came with the team...I suggested it...and they think its a great idea. (Why haven't they suggested this?) This way he would get all his nutrients in a drink...and it comes in 3 flavors. So at lunchtime he drank at least half of one. I'm very shocked and so is the staff. They all know that Mr. T can out eat anyone. He's a veritable eating machine...so are most boys his age. But not this time...he is just not interested in food at all. They stopped the Nabilone..but that didn't help.

Here he is going down for an MRI with his favorite afghan.

Since Monday he was complaining about his left leg. Since he got the last chemo treatment in the big muscle of his thigh...(Asperiginase) he's been getting morphine for the pain. Wednesday his leg was red and inflamed a bit....so his Dr. had an X-ray done....it seemed to be worse on Thursday...so we went for an ultra-sound. The results showed an infection so an antibiotic was ordered.

This morning I noticed his leg seemed to be redder and very hot to the touch. As soon as I informed the Dr...they sent us for an MRI.

When we got back to our room....all hell broke loose. His oncologist was here...then we had a visit from the infectious disease doctors. It seems there is an infection in the muscle under the skin....and they were very worried about it. They are afraid if it spreads they will have to do surgery! They really scared me when they used the term...'flesh-eating disease'!

The surgeon then came and checked his leg...and circled it with ink...ordered a different antibiotic and told me we will keep a constant watch on his leg. If the infection spreads or the redness...he will be rushed to surgery so they can cut open his leg and clean the infection. This flesh-eating disease could be caused by a low immune system as well as chemo drugs. The surgeon also said no food or drink because he may go to surgery! (He's fine with that!)

The first circle was drawn on Wednesday....the outer circle was drawn today. I sure hope it doesn't spread. He doesn't need anymore complications.

On top of that when he fell asleep his blood pressure went from 120 to 170/76. Whoa there!

Right away the nurse gave him Fenofibrate and his b.p. came down.

Then we got him up in a wheelchair...his leg is too sore to walk on...and weighed him.

Since yesterday he lost 6 lbs! That's impossible!

He hasn't been eating or drinking. This is a real cause for concern!

In the past...when he took Vancomycin it had caused damage to his liver and kidneys and he needed dialysis & a catheter!

He has been urinating a lot....so thats another thing we need to watch closely! How can anyone lose 6 lbs in one day?? No wonder he doesn't want to eat or play his games.

Also in September...they were supposed to put a broviac in his chest. Someone got confused and they put in a port instead. I remember when he came out of the operating room....I remarked....where's the broviac? and the Dr. after looking at the order had said...'Oops'. Well...what was done was done! Mistakes do happen!
Now they tell me that when his neutro-polys are up to 0.20 he has to get the port out and the broviac put in. The doctor at Toronto Sick Kids insists that they need a broviac in order to give him the medication he will need there. So...there will be no swimming whenever we get to go home.

This is a port. Once it is in your chest you don't see it at all. The nurses have to feel with their fingers where it is in order to access it. Most kids don't like it...as it sometimes moves and is on a slant...so it may take 3 or 4 tries before a nurse gets the needle in....and much screaming on the patients part. You can go swimming with this port or take a shower.

This is a broviac. It has 2 lines that come out of your chest. This is easier to access or to give chemotherapy or any medication. You can't take a shower or swim with a broviac. Kids like it because it is easily accessed without causing any pain to the patient.

Someone sent me an email last week wondering what do the parents 'do' here....they must be awfully bored??

Let me assure you.....the parents are never bored! We are home-sick, heart-sick, sad, lonely, confused, frustrated, angry, hopeful, fearful.....one day we're up and the next day we're down. We support each other, we share in each others hopes, we encourage each other, babysit each other's kids to let someone go for a coffee or cigarette or maybe lunch, share our pain with each other and our successes.......but No....we're never bored!

We wait on doctors, pharmacists, dieticians, etc...and rush our kids to dental, x-ray, ultra-sound, radiation, MRI's. We try and make sense of the mounds of paperwork we receive. We keep notes on our childs health status from day to day....their b.p., blood counts,sugars and try to keep our children fed and comfortable. We order their food and make their beds...we run to get them treats or movies they want from the playroom. We play games with our children, try to keep them entertained and happy and try to stay in a positive frame of mind regardless of how we really feel.

We eat when we can and sleep when we can.....but No...we are never bored!