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.