APRIL 28, 2008

Good day today! The doctors allowed Mr. T out of his room so he went to the playroom and played Rock Band with other kids. Although he is still in isolation they want him to move around....walk around the unit or go to the playroom....if not...they worry he may get clots. And we don't need anymore problems!

We are still waiting for his counts to come up. Today he ate well. He had a good breakfast and dinner that I bought from the cafeteria....as he still refuses to eat off the free menu. You can get very tired of cheeseburgers and fries, hotdogs, & poutines. Mr. T has always had a good appetite. I don't worry when he doesn't eat for a few days. He makes up for it real fast. In the past month he has only lost 6 pounds.

They are trying to find a new anti-fungal medication for him to take. When he takes Amphoteracine-b.....it affects his kidney's.......then they tried Ceftazidine....but it affects his liver.....
He has to have an anti-fungal medication which keeps away the fevers. This is absolutely necessary when your immune system is compromised. Let's hope they find one that doesn't have severe side effects.

Today:
Hemoglobin is 89*
Platelets are 41*
Neutro-polys are 0.00*

APRIL 26, 2008

Food is not staying down! Everything seems to come up. Mr. T will feel better once his counts come up.

That's what we are waiting for. Still no appetite!



Hemoglobin is 86*

Platelets are 13*

Neutro-polys are 0.00*



Today he received platelets.

APRIL 23, 2008

We are still in isolation..and waiting for his counts to come up.

Hemoglobin is 88*

Platelets are 15*

Neutro-polys are still 0.00*

Mr. T doesn't want to eat.......he continues to feel nauseous. He has ondanestron and gravol all day long. He's refusing to let the nurses put the blood pressure cuff on him because of pain in his arm muscles. They have been putting the cuff on his leg but that doesn't give an accurate reading. This could be due to a low calcium level. Today they did another ultra-sound to see if there is any change in his kidneys.

Mr. T just wants to sleep.....he's not interested in television or his games. Hopefully he will feel better when his counts start coming up.

SORRY!!!

For those of you who have left a comment.......I'M SORRY! I didn't realize that I had to allow 'comments'.....and I'm not at home to get the emails.

I corrected that! Now you can leave a comment if you wish!

I truly appreciate all the warm thoughts and prayers coming our way! Thank You!

APRIL 20, 2008

The past 2 days have been very difficult. Mr. T has had a lot of bone pain in his arms and legs....caused by the chemo....high potassium levels....and nausea. He's had a lot of terrible medications.....like vancomysin, ondanesetron, benadryl, tylenol, gravol, 'shake n bake' and more!
They noticed that the 'amphoteracin b' was causing kidney damage......so they stopped it.....and now they give him a new antibiotic called 'ceftazidime' and a new anti-fungal medication called 'caspofungin' which doesn't have severe side effects.
Mr. T's Uncle came up Friday night and gave him a buzz cut....as his hair was falling out from the chemo. Hair was getting into his food and drink and the pillowslips were covered in hair. I will post a pic when he is feeling better.
We have to wait till his blood counts are up in order to get the 2nd cycle of chemo treatment.

Hemoglobin is 81*
Platelets are 12* - yesterday he got 2 units of blood and platelets
Neutro polys are still 0.00* - platelets today as well

His Uncle also brought him the game Devil May Cry for his Xbox 360....which he will enjoy when he's feeling better.
Monday....a physio therapist will come in the morning.....as the Doctor is concerned that if he doesn't move his legs (too painful).....he will get blood clots.

APRIL 18, 2008

The past 2 days have been horrible. The medication amphoteracine b is horrible. Not only did Mr. T get chills and fever...but also terrible nosebleeds. Yesterday the first nose bleed was for 50 minutes. Then the nurse has to order platelets.....and that can take awhile. His 2nd nosebleed of the day was for an hour and a half. There was a constant flow of blood in the bowl...although Mr. T as well as the nurse took turns holding his nose firmly to stop the flow (which didn't work) and ice on his neck. At the same time.....Mr. T was suctioning the blood out of his throat with a suction tube that looks like something a dentist would use.

Of course Mr.T. didn't want me taking pictures of him with a nosebleed...but I did manage to take a picture of the suction cup full of blood attached to the wall. This is the blood he suctioned from his throat.......it says 1,000 ml....and he also filled up 2 blue basins with blood. That's a lot of blood! At the same time he was getting the rigors (shaking) from that horrible drug. What a mess! Blood all over the blankets....bloody facecloths, bowls of blood and him shaking uncontrollably........while we wait forever it seems for them to deliver platelets. Later he had a fever of 38.9.

At that point he had 2 doses of demerol, benadryl, tylenol........and later morphine. The morphine helps with the aches and pains he has in his arms and legs from the chemo. It is such a relief to see him sleep without shaking or bleeding or puking!

Hemoglobin is 81*

Platelets are 18*

Neutro-polys are 0.00*

No....we are definitely not having fun!

SHAKE 'N BAKE.........

Today they are starting this antibiotic on Mr. T.......and I am not looking forward to it! It's a horrible drug. The reason they are giving it to him....is because the antibiotic he is now taking is not working.....he continues to get fevers every evening. 2 years ago Mr. T ended up in ICU with kidney damage because of this drug. It doesn't matter if I brought him tons of warm blankets...he would still shake so bad complaining of fever and chills.

Amphotericin-B
Amphotericin-B (AM-fo-TER-eh-sin Bee)[Fungizone/Bristol-Myers Squibb]: - an antibiotic drug derived from chemical byproducts of the soil bacterium Streptomyces nodosus. Amphotericin-B has for some years been the standard treatment drug for only the most serious fungal opportunistic infections seen in AIDS, especially against diseases such as cryptococcal meningitis or aspergillosis. Ampho-B is generally given intravenously, by slow IV drip, and though it is usually extremely effective against these deadly fungal infections, it is also incredibly toxic, its terrible, almost legendary, side effects of chills and fever earning it the moniker "shake and bake" among People with AIDS. Other side effects of IV Ampho-B include kidney damage, anemia (low red blood cell counts), disturbance of the blood's balance of electrolytes, severe nausea, vomiting, and occasional phlebitis (pain/inflammation of the vein at the injection site). Premedication regimens (using Benadryl, Tylenol, Demerol, and one of the corticosteroid drugs) may reduce some of these side effects, but cannot eliminate them entirely.

Oh what a night he had! He shook so bad even with so many blankets on....but that's the drug! And still he had a fever of 38.8. They had given him more benadryl and gravol.

It may be hard to see but he actually had 7 bags hanging from the I.V. pole. He had to have a bolus as well for his kidneys. With the amphoteracine b....they have to watch his kidneys....make sure he is well hydrated.

He also had platelets before they started this terrible drug.

His hair is starting to fall out and it really bugs him....especially when you get a hair in your drink or in your food....or up your nose! This weekend his Uncle will come up and shave his head. When you lose your hair from chemo....it usually falls out in clumps. Most of the kids shave their heads so that it doesn't look too terrible when it falls out.

To think he will have this drug for 2 more nights. They just gave him ondanestron to counter the nausea....but still he threw up everything he had all day. I dumped out the first bowl and had to get him another one.

Hemoglobin is 78*

Platelets are 18*

Neutro-polys are 0.00*

Hopefully he can get some sleep tonight.

APRIL 14, 2008

Great day today! Not only was the sun shining for a change....but Mr. T was feeling Okay!



After not eating much for the past few days....he woke up with an appetite and had boiled eggs, sausages, bacon, toast and chocolate milk!

Today he had an ultra-sound done so the doctors can see his kidney, liver and pancreas. Mr. T also had a sinus x-ray done. It was nice getting out of the room for awhile....even if it was only for tests.

Later we played cards and Battleship....I must work on my strategy a little more. I really enjoy playing! We both won 4 games each! Then we watched Walt Disney's 'Underdog'! Good comedy!








Hemoglobin is 81*


Platelets are 24* - as he received platelets yesterday


Neutro-polys are still 0.00*

APRIL 12, 2008

We did play Crazy 8's last night for half an hour! Mr. T won 3 drinks from me...which means I buy him a Brisk Iced Tea for the next 3 days!

Today he didn't feel good at all....refused to eat anything.

By afternoon he asked for a Haagan-Daz icecream bar and I ran to get it. At least he ate something. He just wanted to sleep.....no movies or games.

Hemoglobin is 88*

Platelets are 20*

Neutro-polys are 0.01*

The numbers are low and so is his energy. Sometimes our bodies just need sleep to recuperate.

With the massive doses of chemo that he has been getting along with all the medication...no wonder he's so tired and has no energy. There will be better days ahead.

APRIL 11, 2008

Mr. T likes being alone in his room. Sometimes when you have a room-mate...and they can't sleep at night...then they must sleep in the day. Yesterday, he had to play his games on Mute as he didn't want to disturb his room-mate. Now he can play his games or watch television with the volume up!



Today his counts are lower:
Hemoglobin is 86*
Platelets are 25*
Neutro-polys are 0.02*



For the next 3 days...Mr. T..will receive Vancomycin. Vancomycin is indicated for the treatment of serious, life-threatening infections by Gram-positive bacteria which are unresponsive to other less toxic antibiotics.


So far today...Mr. T has received Ondansetron to stop or reduce nausea...Gravol several times in his I.V...for the same thing....and Tylenol for pain. He is aching all over and doesn't feel good.



He made an attempt at eating a cold-cut sub that I made him....with turkey, ham, salami and swiss cheese...but managed to eat only one bite...he felt too sick to continue.


Hopefully later...he will feel better later and we can play cards.

He asked me to go to the 'Gift Shop' and get him some chocolate-covered pretzels! Hmmmm! Don't they look good??

He managed to eat 2 pretzels! Maybe tomorrow will be a better day!

APRIL 10, 2008

Tonight they started Mr. T. on anti-biotics as he has a fever. Now that he is neutro-penic..he won't be able to leave his room. No leaving the room or visitors without a mask. They are moving the little boy next to him out of the room...so that Mr. T can have the room to himself.

Although he is not feeling well...he continues to be in good spirits! This is to be expected. He will have to get worse before he gets better!

I can always get him to laugh by telling him a Michael Jackson joke! Did you hear that Michael Jackson was seen at Wal-mart? He heard little boy's pants were half off!

APRIL 10, 2008

Not a good day! Mr. T slept most of the day....feeling very nauseous. Temperature was 38.2.....gravol and tylenol all day.

Hemoglobin is 88*
Platelets are 40*
Neutro-polys are 0.07

He managed to go to the playroom for half an hour...all he wants to do is sleep.

Hopefully tomorrow is a better day!

APRIL 8, 2008

Today Mr. T received chemo again and also platelets...but he felt well enough to go to the play room with his room-mate. They enjoyed 'Rock Band' for a few hours.......something like Guitar Hero...he played guitar and his pal played drums.

Later he watched 'Mr. Woodcock'....a very funny movie!

I'm very glad Mr. T is having a good day. The good days will be rare as we get closer to the day when he will get a bone marrow transplant. Life is too short....enjoy every moment!

Hemoglobin is 98*

platelets are 15.3*

Neutro-polys are 0.22*

MORE CHEMO!

APRIL 7, 2008
Today...Mr. T started more chemotherapy. You can see the Cytarabine on his I.V. pole. Mr. T is not paying attention....he's too busy playing Lost Planet on his X-box.
It's nice to see him feeling better!



Hemoglobin is 69*
Platelets are 32*
Neutro-polys are 0.23*


3 hours later...he received 785 ml of blood as his hemoglobin was low....and he slept right through that.





Mr. T has lost 2 lbs in thepast week...the chemo drugs can make you sick to your stomach...and cause you to lose your appetite.

NOT A HAPPY CAMPER!

APRIL 6, 2008

Today was such a beautiful sunny day...that Dr. K gave Mr. T a day pass so he could get out a bit in the sun. The nurse unhooked him from his I.V. pole. Mr. T asked if we could go to St. Laurent Mall (he wanted a game) and the Doc said NO!!!! Mr. T begged.... but it was still NO! Dr. K..said...we have just given you massive doses of chemo....your blood counts are low.....you can't go to crowded places...it would be dangerous for you.

Instead...we walked over to Ronald Mcdonald Manor very slowly. It's only a block away...but Mr. T was getting chest pains...and out of breath...so when we got there...he laid on the couch and watched television.

He hasn't been eating very well...so when he begged me to get him Chinese food...I gave in! He managed to eat 3 chicken balls and 2 spoons of rice! In Mr. T's words....HOSPITAL FOOD SUCKS!

On the way back to Cheo tonight...we took a pic of the first rabbit we've seen this year. There are many rabbits around Cheo.

Tonight the counts are:

Hemoglobin is 75

Platelets are 43*

Neutro Polys are 0.37*

APRIL 5, 2008

During the night.....Mr. T had a nose-bleed that lasted 1 hr. 15 minutes so he was given platelets again....and gravol & benadryl because he has a reaction to blood products.

At 8 p.m....I told the nurse that after feeling his forehead...I thought he was getting a fever. She took his temp but it was only 37.1.....but she said she would keep an eye on it.

Sure enough it went up to 37.8 a few hours later. Doctor's & nurse's are starting to pay attention to what parents think (some of them).....they realize that we know our child/grandchild best.....so when we 'think' they are getting a fever....they are! Parents do know best!

Because Mr. T. received platelets....today his blood work has improved:

Hemoglobin 75

Platelets 56*

Neutro-polys .55*

Tonight with his mini DVD player...he was watching a movie in bed. He started laughing so hard...I just had to see what he was watching! 'DEUCE BIGALOW'...European Gigolo??? Hey...that's not a kid's movie!! It's rated 'R'! and he got that from the Child Care Specialist in the 4North Playroom! Hmmm! I guess I'll have to watch it later....mind you...only to review it of course!

WE WANT YOUR BLOOD!!

50 billion mosquito's can't be wrong!

It only takes half an hour or so to donate your blood! And it doesn't cost a thing!

WHY SHOULD YOU GIVE BLOOD??

Giving blood doesn't just benefit recipients. Regardless of age, donating blood offers many benefits for donors. It lets you:
Make a difference in your community by helping others.
Develop a sense of commitment to and connection with your local community.
Be assured that adequate supplies of blood are available for you, as well as your family and others.
Check your blood pressure, temperature, hemoglobin and pulse rate every time you give.
Join a group of special volunteers.

The demand for blood never lets up. Every day, thousands of people need donations to live. Before they can receive it, donated blood must go through time-consuming tests. Then, it must be used relatively quickly or it will perish - whole blood, for instance, is no longer usable after 42 days. As a result, maintaining an adequate blood supply is a challenge - especially when a disaster occurs, which may cause the need for blood to soar. The only way to meet demand is to have regular donations from healthy volunteers.

GIVE THE MR. T'S OF THIS WORLD....A TOMORROW...BY GIVING BLOOD TODAY!

2 years ago....when Mr. T spent 6 months in the hospital....he received 38 units of blood & 47 units of platelets.

One year...when I lived in Montreal...we planned a family day! All the adults got together and went and gave blood at the local bank. Not only did we have a great time....it was a good excuse to get together....and we felt great just knowing that we were giving the 'gift of life'!

YUCKY DAY!

APRIL 4, 2008

Mr T is not feeling well today. Sick to his stomach. The nurse kept giving him Ondansetron (reduces nausea) and gravol throughout the day.

He managed to eat half a bowl of chicken noodle soup & a few crackers.

Hemoglobin is 72*

Platelets are 16*

Neutro-polys are 17*

With those counts...no wonder he doesn't feel well. His Uncle G & Aunt came for a visit and brought Maggie...so that cheered him up. Uncle G brought his Xbox and games...earphones and he also burned him 25 movies. When they left...he watched Alvin & the Chipmunks and really enjoyed it. Mr. T has the kind of laugh that once you hear it.....you're laughing as well....and everyone comes to see what he's laughing about it. I love to see him laugh!

Hopefully tomorrow will be a better day....

APRIL 3, 2008

Today was a good day! After not eating for 2 days...Mr. T's appetite is back in full force.

Today he had 2 bagels with cream cheese...pears in the afternoon and later I bought him a 12" cold-cut submarine sandwich...and jello!

Hemoglobin is 77

Platelets are 21*

Neutro-polys are 0.29*

His counts will continue to go down before they can go up again! He is still not able to go to the playroom...but the child-care workers bring him any movie he requests..and of course he enjoys his Playstation games.

The nurses are great...when they have the time...they sit & chat with Mr. T...he's getting to be a real flirt! Even the maintenance workers talk 'gaming' with him. This is a very child-oriented hospital.

A nurse he knows well...remarked.."You're so good with gaming...who showed you how?"

He replied..."My Uncle G..taught me when I was 2 yrs old." And my dad taught me to watch cartoons."

Putting in my 2 cents...I said. "And who taught you to fish? Papa?" and he said.."No..he taught me how to find the porn channels!"

Good Lord! The nurse just laughed! When she left I said.."Tee...you know that's not true!" and he replied....."Well I found them on my own.....a few times when I walked in...Papa changed the channels fast...but I saw what he was watching!"

Somebody needs a good talking to!

APRIL 2, 2008

During the night Mr. T received the last bag of Cytarabine. He is still very nauseous! This afternoon, his nurse gave him an injection in his thigh...it's called L-asparaginase which is an anti-leukemic. He tried watching a movie and playing a game...but gave up after 5 minutes and asked me to tuck his afghan around him.

I just want everyone to know how much these kids love the comfort of their afghans when they are sick and needy. It's definitely a 'gift of love'....a 'super-hug' crocheted with love and compassion by more than 40 pairs of loving hands. How can you beat that?? Mr. T also insists on having his afghan when they take him down for x-rays or other tests. Never underestimate the power of an afghan. I think what made this afghan very important to Mr. T...was because everyone who made a square had included their name and where they lived. As Mr. T studied each and every card...he marvelled at all the places all over the world where each square was made. That is truly awesome!

Shelly @ THIS ECLECTIC LIFE gave my grandson the very 1st afghan that was made. She has almost reached her goal of making 140 afghans for kids with cancer. Please visit her and give her a 'thumbs up'!

Here he is getting a shot of Asparaginase into his thigh muscle.

Although he has been receiving Ondansetron (which is used to reduce nausea & vomiting) all along with the chemo drugs...he still needs gravol.

Now I have to figure out this camera..I find my shots are hazy.

APRIL 1, 2008

Finally we're admitted to 4North which is the Oncology floor. Mr. T has a double room. It seems that we have a full-house here. Every room is full......from babies to teens. Every child has some form of cancer.

Again today...Mr. T is still on Cytarabine..and gravol. He lost his appetite and refuses to eat anything or drink. The nurse said this is quite normal. I'm not too worried as he is a big boy for 12.
All the nurses on 4North came in to visit Mr. T. They all had to feel his dark, silky curls...they just couldn't believe the thick head of hair he has. I think he looks much better with a nice short hair-cut...but what do I know? He was planning to let his hair grow so he can have dreads!!
They couldn't believe how much Mr. T has grown in the past 2 years!
The nurses are great here...they come in constantly to see if Mr. T needs anything. He just wants to sleep with his comfy afghan!

1st CHEMO TREATMENT....

March 31/08

We arrived today at 8 a.m. Right away they gave Mr. T. platelets as his blood counts were extremely low. This afternoon they started the chemo. Over the next few days he will be receiving Cytarabine 100 mg. They also give him eyedrops at the same time to prevent conjuncvitus.
Hemoglobin is 95*
Platelets are 18*
neutro-polys are 1.01
Throughout the day Mr. T ate well.....just in the evening he started feeling nauseous...so they gave him gravol.
Seems I'm having difficulty posting...everytime I try.... I get a message saying Internet explorer will shut down...so I am saving each post till Younger Son comes to vist...as I forgot a necessary wire as well to put pics on laptop.
Will try again tomorrow.