FRIDAY MAY 30, 2008

Today wasn't any better! Mr. T woke up with a fever....pain in his leg...nausea and so the day went! He slept all day long hooked up to one drug or another.

The nurse had to wake him up to take his oral meds and do his stats but thats about it.

He wouldn't wake up or watch television or play games. He's just too sick.

Tonight they are trying another medication called Nabilone.

'Nabilone is chemically related to marijuana and belongs to the class of medications called cannabinoids. It is used to treat severe nausea & vomiting in people undergoing cancer chemotherapy. It works in centers of the brain to reduce nausea & cause sedation. Maybe it will get him to eat tomorrow. I understand it is also a big help to anorexics, Aids patients and other delibitating diseases.



Actually its better known as 'medical marijuana'. If it relieves his nausea and stimulates his appetite....I'm in favor of it!

I can't even eat in front of him......just the smell of food will make him puke...so I run to eat lunch for 5 minutes and hurry back....so when the machines beep I can buzz the nurses as he doesn't hear the machines. He's knocked out on Benadryl & Morphine & so many other pills.



He also had platelets today because his platelets are low and yesterday he had a bad nosebleed.

Hopefully we both can get some rest tonight.

THURSDAY....MAY 29, 2008

Today will be exactly a week since Mr. T stopped eating. He had a boiled egg last Thursday morning. I've been trying to get him to eat but to no avail. I am not allowed to use the 'f' word in front of him...and I mean 'Food'.
The Drs want to see him start eating but he's just too sick to even try. He continues to need gravol and ondanestron for his stomach....and doesn't even want to play x-box or watch television.
Today they are starting his last chemo treatment and I'm excited about that. It will start today and end on Saturday....then we wait for his counts to come up.

When someone gets chemo it wipes out all your counts....everything will hit bottom....and then you wait for the counts to come up again!

Right now...his counts are:
Hemoglobin is 86*
Platelets are 57*
Neutro-polys are 0.46*

But his neutro-polys will take a dive after this chemo treatment.....go right down to 0.00 and very slowly they are expected to come up again.

They tell us that when his neutro-polys are 0.20.......we can stay at Ronald Mcdonald House.....and go back and forth for blood work......and when they hit 0.50........WE CAN GO HOME!!
Well....just for a little break before we head to Toronto for 7 to 8 weeks.
We are really looking forward to going home even if its only for 4 or 5 days....that would be Heaven!
Today is our 60th day here!
Mr. T is well aware that even if he will get to go home for a break, he can't go anywhere...and we have to limit the number of people that come over.
But he can have his best friends over....he can swim with them or game with them...have a few of his friends sleep-over (if they are not sick & if they don't have anyone sick at home) and have BBQ's every day.
This is all providing that his counts come up and there are no complications along the way!

The hospital gave us 'tentative' dates for Toronto. Admission will be July 7th....and Bone Marrow Transplant will be July 11th...providing everything goes well. Now...if we can just get through this last chemo session. I'm hoping it will go better than last weekend!

HAPPY BIRTHDAY SWEET THIRTEEN!!

It's been a horrible night....fevers, diarrhea, puking and hallucinating! Not a very great way to start your birthday! The nurses were really sweet...they all marched in this morning at 7....singing 'Happy Birthday' to Mr. T...they did get a smile out of him with their carrying on and dancing around the room!

There will be no birthday cake...he doesn't want one..and I can't even mention the word 'food'...it seems to trigger his stomach. How much bile can a person actually throw up?

He woke up with fever but by noon-time his fever broke and he was able to sit up when his Uncle came in...and open his presents!

I was hoping to take some pics of him...but when he spotted the camera....he got upset with me...and warned me...'NO PICS NANNY'!...so I had to respect his wishes.

When a teenager is sick...they sure don't want you taking their picture and posting it...and I can understand that!

His Uncle gave him a 'Grand Theft Auto' lock box with key...and the game ProStreet Need for Speed for the X-box....and a mini mouse for his laptop which is really cute. It changes colors and has a retractable cord.

I got him the Ironman game for the X-box.

Also...his Uncle had gone shopping a few days prior with a lovely lady from the Wish Foundation...and they picked him out a Shamano Fishing Rod (most expensive in the store) as well as a Shamano Reel...a huge tackle box with the latest lure's, and a large net and also a special bag to pack his lunch when he goes fishing....and 2 really expensive sleeping bags for camping out.

All of this stuff was bought at Le Baron which is one of the biggest 'Hunting & Fishing' Sports shops in Ottawa.

And to top it all off.......he received $550 dollars of gift certificates to be spent on anything he wants at Le Baron whenever he's well enough to go shopping with his Uncle. Was he ever impressed! He was grinning from ear to ear....just thinking of all the stuff he could get for that amount!

Ronald Mcdonald house gave Mr. T a '6 in 1' game set...so we can play Backgammon or Checkers here at the hospital. Mr. T knows that when we finally get home...we will celebrate his birthday with a BBQ and have all his friends over.

Yesterday when I was in the middle of this post.....we lost the internet for the rest of the day...so I'm posting late.

Today is Tuesday and Mr. T has not eaten or drank anything since last Thursday. I'm hoping his appetite comes back soon.

I hope he never goes through another weekend like the last one. I slept sitting up in the chair (I used to think that was impossible) because I was afraid with high fevers and hallucinating that he would rip his lines out.

I'm really glad to see he's feeling much better.

IT JUST KEEPS GETTING WORSE....

They gave Mr. T his last chemo for this week around 11 a.m....and right away he got much worse. He started getting chest pain...his oxygen dropped so he needed an oxygen mask, temperature skyrocketed to 40.9 and his blood pressure dropped really low. Right away they moved out the other child in his room and isolated him. The SPOT team rushed in....and started doing tests on him....checking his heart and oxygen and doing more culture's.

For 2 hours we had a team in the room....checking everything and finally they did x-rays of his chest and stomach. All they can give him for the fever is Tylenol but only every 4 hours. Now he has diarrhea as well.

Because he hasn't eaten in more than 24 hrs...he's puking up bile. They sent his culture's to the lab...then they gave him blood transfusions as his hemoglobin is too low.

The tylenol helps a little....his temperature goes down to 39.7 and within the hour its back up to 40....and we have to wait for 4 hrs for more Tylenol.

He has so many bags attached to him...he's getting bolus's..and antibiotics like Vancomycin which they have to watch carefully so that he doesn't get renal failure....oh boy...he is in such misery.

He'll have the chills and minutes later..he'll be burning up. I've never seen his temperature go up to 40.9...ever. This is a 1st.

They say the fevers are the cause of the chemo....the 'cytarabine'...but I'm thinking that maybe his counts were too low to start the 2nd cycle of chemo...but what do I know?

They are giving him everything they can for the nausea....Gravol...they're pushing it into his line...they give him Benadryl and Odanestron....and still, nothing seems to help.

The SPOT team will be back later to check on him.

He was just raving while he was wide awake....talking about dangerous snakes, duels and asking for ketchup. I know that's because of the fevers........and now they tell me that it takes a couple of DAYS for the antibiotics to work! I was hoping the fevers would break real soon so we all could get some sleep!

Mr. T asked me if he was going to die.......and I told him....'No...don't plan on it...you've got a lot of living to do yet...tomorrow will be a better day...we just have to get through this, and we will!'.......That's a tough question to answer when you see him suffering so much.

Rubbing his back seems to help a bit, cold cloths on his forehead too when he's burning up....and warm blankets when he's freezing!

I know that God will get him through this ordeal....I just don't understand why kids have to suffer!

So many people out there are 'living to die' and these kids are 'dying to live'! Where's the justice?

I hope Mr. T has a good night and a better day tomorrow....his Birthday!

MAY 24, 2008

Chemo is horrible. Actually...it's a poison. The problem with the medication is in order to kill the bad cells....it also kills the good cells.

The side effects of cytaribine are fevers and nausea. Last night his fever went up to 40.3. He really should be isolated in a private room....but there is no rooms available. There is a shortage of everything here...including pillows!

Mr. T is so sick with chills and fever and puking...that he finds it very hard to tolerate the little boy in his room. The child is only 3 yrs old....but the mother reads children stories in a squeaky loud voice.....and when she's not...the little lad is watching Disney movies. I'm ready to choke the Wigglies....the chipmunks...Barney...and Sponge Bob crappy pants! Over and over all day long! At the same time...the mother is on her cell phone constantly!

Mr. T keeps putting the pillow over his head....and I tell him to just be patient. It's very difficult to be kind & understanding when all you want is sleep and quiet! Okay....I'll stop the whining now!

Since yesterday....Mr. T won't eat or drink anything!

I'm really hoping that tomorrow will be a better day.......because it's a very SPECIAL DAY!

Mr. T's birthday is tomorrow.......and you're only THIRTEEN once!

I have a few surprises in store for him! Let you know tomorrow!

YAHOO....

We are back at Cheo. Although Mr. T's counts are not over 1.00....they are only 0.74....they called us to come in. They want to go ahead with the 2nd cycle of chemotherapy....his counts have taken too long to come up. The sooner we get this done....the better!
Today he will start his chemo....hopefully everything will go well! We are getting Mr. T's sugars under control. Since Friday...they have been between 5 & 7...and that's where the endocrinologist wants it. Smaller portions and healthier choices.
And I'm glad to be back here...as I will have access to high-speed in our hospital room.....so both of us can have our laptops on.
If everything goes as planned....Mr. T's chemo will take 2 weeks...then 2 weeks for his counts to come up again....and hopefully we can go home for a few days before we head to Toronto! So...bring it on!!

MAY 18, 2008

I haven't been able to post all week! We were sent to Ronald Mcdonald House because there is a shortage of beds....and Mr. T's counts are not high enough to start his 2nd cycle of chemo....but his counts are too low to go home for a break. His neutro-polys are up to 0.38* and they need to be 1.00* in order to start the 2nd round of chemo.

There is a lot of construction going on at Ronald Mcdonald House...they are putting in all new heaters and air-conditioners in the rooms...so the internet is down.

It is boring for Tayten here...as there is no kids his age to play with...so his days are spent playing games or watching television by himself.

He still walks over to Cheo for school....and for blood work and to see the endocrinologist. We haven't had much good news there.

Mr. T is now DIABETIC. His triglycerides should be between 0.4 - 1.4 and they are 17.69....and no that is not a typo. That number is way over the top. Friday we spent all afternoon with the endocrinologist, a diabetic nurse and a diabetic dietician. Mr. T now has a OneStep glucose meter to check his blood twice a day. He was shown how to do it himself so he could take part in monitoring his own blood sugars. He checks his blood 1st thing in the morning and before supper and enters the number into a book. Also he is on Metformin and another medication to adjust his blood sugars....as well as a special diet which he's not too happy about.

All these problems stem from his immune system which is compromised. We're hoping that with medication and diet we can get his blood sugars under control.

Mr. T hasn't complained about no pop drinks....as long as he can have Crystal Lite in his water...he's okay with that.

We have to watch the fat content and sugars in all his food...which means reading Labels constantly. Also we have to watch portion control! That doesn't make for a very 'happy camper'.

He hasn't complained about switching to brown bread, or having 2 strips of turkey bacon instead of the real thing...but he does miss chips and icecream. There is a no-sugar icecream available but its high in fat. This week I will go to Loblaw's and check out their diabetic section and try t0 make his diet a little more fun. I know they do have diabetic jams and cookie's. Now if only someone can come up with diabetic chips...life would be grand!