WEDNESDAY, JUNE 25, 2008

Another good day! The neutro-polys are at 0.03 today....so they are coming up....slow but sure!

Mr. T was very happy today. His best friend Jacob came to see him. Wednesday morning's they have a parent-support group here where you can have coffee, muffins or fruit and get to know the other parents and just relax.

So I left the boys to their games and relaxed with the other parents. There is much to do in preparation for Toronto...so its nice to take a break and talk to adults for a change., compare notes, share ideas & support each other. I have learned more from the other parents than I have from the medical staff!

His counts for today are:

Hemoglobin is 98*

Platelets are 35*

Neutro-polys are 0.03*

TUESDAY, JUNE 24, 2008

Today has been a good day! Finally we have one little neutro-poly. It's been such a long wait....but this is the start! Hopefully they will zoom up so we can manage to get home for a few days!

Today is our 86th day here...and Mr. T is losing patience. He has been very cranky lately. Teens like to have some control...so when the drs tell him to do something, or the dietician suggests something....he refuses. And if I agree with them....well he thinks I'm on their side. It's very difficult to be here for a long time and in isolation...so I understand well how he feels.

It seems all the parents of teens have been having a hard time with their kids. And of course when the kids don't feel well...and are good and tired of being poked and prodded constantly...well who do you think gets the worst of it??

I've seen parents cry in the hallway.....after being told by their child to 'get lost' or 'I don't need you'...or 'I hate you'......it can be very difficult.

When Mr. T is having a bad day.......I tell him I'm leaving and I'll be back later......this helps to diffuse the situation. He has time to calm down and think and I will go over to Ronald Mcdonald house and use the treadmill or read.

When I come back...Mr. T apologizes...asks for a hug......and everything is fine. We all need to vent...and he has every right to be angry or sad or lonely. But he has no right to take it out on me or the nurses.

You really can't take it personal...if you did...you'd be a basket case. We all have bad days and moreso if you're in the hospital.

His glucose levels are under control. We manage to keep them between 5 & 7 and he still manages to have pizza & low-fat Pringles chips.



Hemoglobin is 94*

Platelets is 37*

Neutro Polys are 0.01* Yahoo!

STANLEY CUP....

Ottawa's greatest treasure....the Stanley Cup came to visit the children at Cheo Hospital and Ronald Mcdonald house today. The kids who were in isolation....like Mr. T.....got to hold the cup in their room.

It was very impressive. It is 116 years old...it's almost 3 feet tall and weighs 35 lbs.

You can touch it or kiss it...but you can't carry it! (in case you drop it).

Even the handler...the guy who brings the cup to the hospital, schools and centers wears white gloves. The cup is stored in a special travelling case on wheels to protect it. Everybody was excited to see it...the kids, the nurses, the parents and staff. Canadians love their hockey! Nothing compares to Hockey Night in Canada!

The Stanley Cup (French: La Coupe Stanley) is an ice hockey club championship trophy, awarded annually to the National Hockey League (NHL) playoffs champion. It is commonly referred to as The Cup, The Holy Grail, or facetiously (chiefly by sportswriters) as Lord Stanley's Mug.[1] The Stanley Cup is surrounded by numerous legends and traditions, the oldest of which is the celebratory drinking of champagne out of the cup by the winning team. Unlike the trophies awarded by the other three major professional sports leagues of North America, a new Stanley Cup is not made each year; Cup winners keep it until a new champion is crowned. It is the only trophy in professional sports that has the name of the winning players, coaches, management, and club staff engraved on it.[2] The original bowl was made of silver and has a dimension of 18.5 centimeters (7.28 inches) in height and 29 centimeters (11.42 inches) in diameter. The current Stanley Cup is made of silver and nickel alloy. Today, it has a height of 89.54 centimeters (35.25 inches) and weighs 15.5 kilograms (34.5 lb).[3]
The Stanley Cup is the oldest professional sports trophy in North America.

FRIDAY, JUNE 20, 2008

82 DAYS and his neutro-polys haven't come up yet! Mr. T has been going through many tests getting ready for transplant. This morning he had a GFR which is Glomerular Filtration Rate which is done to see if his kidneys are functioning well.

This afternoon he also had a PFT which is a Pulmonary Function Test done to check his lungs.

He will also get platelets as well as he is very low. So far his mood and attitude is very good. The doctors told me that if his neutro-polys don't come up....we may not get to go home. We may go straight to Toronto....but I haven't told him yet. He would be really disappointed. They can't put off the date of the bone marrow transplant....well they could if they had to...but not for a visit home. There is so much planning involved in setting up a date for a transplant.

Today his counts are:

Hemoglobin is 90*

Platelets are 13*

Neutro-polys are 0.00*

WEDNESDAY, JUNE 18, 2008

We are patiently waiting! Today is our 80th day here! They tell me that each time Mr. T has chemo it takes longer for his neutro-polys to come up again. Every day I ask for his counts and hope that today is the day! The nurses tell us that we have to do a 'neutro-poly dance' in order for them to come up. We are singing and dancing here in the hope of jogging those stubborn polys! We are more than ready to move on & out!

The minute his neutro-polys are 0.2 Mr. T can get the port out and the broviac in......then he will get whatever dental care he needs. Once he gets the bone marrow transplant...he can't get any dental care for a year...so we need to take care of that here. Then we can go across the street to Ronald Mcdonald house till his counts go up to 0.5............and then HOME SWEET HOME! for a little break till our admitting date in Toronto....which was changed to July 6th.

Today we went for an ecocardiogram just to check that everything is fine for the broviac implant. It's just like an ultra-sound of the heart. You can actually see the blood flushing the heart....like a heart on fire. It's really neat!

Today his counts are:

Hemoglobin is 85*

Platelets are 29*

Neutro-polys are 0.00*

Mr. T's appetite is back in full force. I'm really happy about that. I've been told he won't be eating much in Toronto....so I'm glad he's building up his strength now.

SATURDAY, JUNE 10, 2008

Mr. T. is doing much better. He's been eating for the past few days! He's gained 1 lb..and his appetite is coming back. He is now eating cereal for breakfast with fruit....but I have to order his lunch and supper. He refuses to eat the hospital food or freezer meals.

Last night his sister came for the weekend. He was happy to see her....he gave her a stuffed white shi-tzu for graduation (that he received as a gift from the playroom)...she has wanted a real one for the longest time...but that will have to wait a year after his Bone Marrow Transplant. She loves it...she slept with it last night and today she's carrying it around with her. When Mr. T went to the computer she rushed and got clean sheets, pillow slips and made his bed fresh for him. Right now she is in the playroom, working on some project for her brother. You can see she misses him terribly.

It's too bad Mr. T can't get a day pass! Today from 3 p.m. to 7 p.m....the Thrillusionists (a magic show) will put on a magic show for the families at Ronald Mcdonald house....as well, Jason Spezza of the Ottawa Senators will be there.........and 3 chefs from Boston Pizza will prepare the snacks and the supper for all the residents. Yes I will take pics....and get an autograph from Jason Spezza for T. & for other kids on the unit who are neutro-penic....and I'll bring him back some pizza as well.

We are very patiently waiting for his counts to come up. The doctor told us anyday now!

Mr. T is usually always in a good mood. But Thursday he was feeling really down. Nothing I could say or do could change that! The nurses even tried to boost his spirits but he was having none of it.

Then....one of his buddies....Brianna called him and they talked for awhile and suddenly he was back to his old self again. It was great hearing him laugh about his friends latest exploits. I know it involved spitballs!

As soon as his counts come up a bit...I am trying to get other boys his age come into his room to play games...as he has 2 controller's...and I'll tactfully disappear.

Kids.....sorry..'Teens' need to be alone (hang or is it chill) with their peers once in awhile to feel normal without their Nanny around.

I'm going to be multi-lingual when I finally get home. I'm learning computer jargon, medical jargon, & teen talk. So far...teen talk is the toughest....as it changes 'radically dude'!

FINALLY......

For the past 2 days...Mr. T has been eating! 2 Boosts in the morning with a boiled egg. Lunch is jello...another Boost. And each night I have been ordering chicken from St. Huberts BBQ. He has 1/4 chicken breast with fries....another Boost in the evening and a handful of almonds.

When we were admitted he was 179 lbs...now he is 162. It's good to lose weight but not the way he's been doing it. They need to build him up for the ordeal ahead. There is nothing like a tube down your nose to make you see the light. I understand how difficult it must be to eat when you have no hunger whatsoever....but slowly & surely his appetite will come back.

His dietician brought him Carnation Strawberry in a can...and he seems to prefer those to Boost....but she wants him to eat protein as well as carbs to get enough calories in him. I don't care if it maxes me out....I'll get him whatever he wants to eat...as much as he wants. Right now they are not too concerned with his sugars...they just want to see him eat.....but of course I can't buy him chocolate bars, icecream or bags of candy.

We are still waiting for his counts to come up in order for him to get his broviac in....dental work done....and hopefully get home for a break. It's so nice to see him eating again. At least he is making an effort.

Today his counts are:

Hemoglobin is 105*

Platelets are 17* (he's been getting platelets every day)

Neutro-polys are still 0.00*

UP YOUR NOSE.........

For several days now...Mr. T has made a light-hearted attempt to drink Boost. The 1st day he had 2 bottles which equal to 500 calories and the next day he had only one. Nobody can live on 250 calories. They say a boy his age needs at least 2500 calories. They are trying to build him up for the bone marrow transplant coming up.

After 15 days of fasting...your brain no longer gets the message that you're hungry....you just don't want to eat or drink.

So after many warnings...the Oncology Team and the dietician ordered that the tube be inserted.

To say Mr. T. put up a fight is putting it mildly. He let them know 'loud and clear' that they should all go work in a prison....seeing that they were so good at torturing people....and he was having none of it.

They all took turns pleading their case...the doctor, the nurses., and the dietician. They explained that they didn't want to do this...but they had to...that it was imperative to build up his strength for the bone marrow transplant.

After much pleading....okay bribery....(I promised him a game)...assuring him that the tube was just a temporary measure till his appetite started kicking in....then he agreed!

Of course he had to let them all know that I told him horror stories about the feeding tube...and I admit...I did! I'm ashamed of myself!

After several weeks of begging him to eat...I told him in no uncertain terms....."Listen..you have a small nose...and they have a big hose! You know the saying...up your nose with a rubber hose? Well where do you think they got that saying?"

Yes...I told him that.....in order to get him to eat...and instead it back-fired on me.

I told him I exaggerated as usual...and the nurse brought the tube in and showed him how thin it was...and how exactly it would be inserted...and this would take the stress off of him. We were game to go!

Tube feeding provides nutrition to patients who are unable or unwilling to eat food. Conditions where tube feeding is considered include protein-energy malnutrition, liver or kidney failure, coma, or in patients who cannot chew or swallow (dysphagia) due to stroke, brain tumor, or head injury. Patients who are receiving radiation therapy or chemotherapy treatments for cancer may also be candidates for tube feedings.

I didn't know till later...that the nurses had picked a straw to see who would do it...nobody likes to insert a tube in a child.

The 1st attempt wasn't good. Mr. T was calm...I was ready with the water and straw...as she inserted the tube....he was to drink and swallow enabling the tube to go down his throat to his stomach.

Then the volatile puking started...and with vomit down his chest...on his p.j.'s..and all over the sheets...he continued to sip and swallow...and the nurse continued trying to insert the tube....and still the 'spewing' didn't stop. When the nurse saw this wasn't working...she pulled it out.

This is not what they intended. He can't afford to be throwing up like that. Some kids can accept the tube well....and some can't.

Once the nurse told the doctor what happened....they all came in to apologize to Mr. T....they all felt so bad that he had such a hard time. It was not their intention to cause him pain.

While Mr. T washed and changed into fresh clothes....I changed his bedding.

Finally his dietician came in.......and he promised her that tomorrow he would do his best to start eating properly.

She would like to see him have at least 3 cans of Boost...interspersed with protein or healthy snacks and I'm to write down everything he eats and drinks.

A feeding tube can be a sure-fire incentive to eat. Let's see how he does tomorrow!

Oh...by the way....he did not forget that I promised him a game! Thank Goodness he only wants 'Saints Row' for the xbox 360 which is only $20. at Toys R Us! Yes...I will get it for him....I feel guilty enough scaring him with rubber hose stories! How mature is that??

SUNDAY, JUNE 8, 2008

Some good news! His leg is getting better so there will be no need for surgery. They continue to keep a close eye on it. They have his blood pressure stable. The doctors don't know why Mr. T lost 6 lbs in one day...they say there is nothing wrong with his kidneys...but they will weigh him every day.

Today he refuses the Boost...he will not drink or eat....so I'm sure by tomorrow they will put in a tube...he's got to get his nutrients in somehow.

No amount of begging, bribing or threatening helps. Extremely frustrating.

He continues to get platelets every day as his are very low.

I suppose with all the medications in his system....he's just not hungry....and he continues to throw up, so they give him gravol.

His counts today are:

Hemoglobin is 84*

Platelets are 24*

Neutro-polys are 0.00*

I'm hoping tomorrow will be a better day for Mr. T.

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!

WEDNESDAY, JUNE 4, 2008.

I have tried everything under the sun to get Mr. T to eat...but he has no appetite whatsoever. This is very frustrating. We have never had this problem before. You would think that the Nabilone would give him the munchies. His Dr tells him that if she doesn't see him start to eat properly...she has no choice but to feed him by tube. So far we got him to eat cereal once a day...but thats not enough.

Because of the chemo...everything has a metallic taste and he refuses to eat.

I ran to get him a simple egg-salad sandwich...and he said it was disgusting.

Then he agreed to eat peanut butter on toast......the kitchen said because of allergies...no peanut butter. The nurse ran to see if there was any in the nurse's kitchen....but no.

I took the bus to the mall and got him a jar....I was desperate for him to eat some protein. When I got back and spread it on his toast....he said it wasn't peanut butter and refused to eat it. Then he agreed to waffles & syrup....same thing, it went in the garbage.

I even bought his favorite....meatball sub and pizza.....in the garbage!

Finally I went and bought him 2 Bionical kits.......and told him he couldn't have them till he ate!

These are kits of ugly creatures you put together.....and hospital gift stores charge an arm and a leg! But it worked!

He then agreed to have chocolate milk, blueberry muffin, pancakes and a rice krispie square. The doctors tell us this is not enough...he needs real food and protein in order to build himself up for the bone marrow transplant that comes next month. I understand its difficult to eat when you don't feel good...but he has to...or he will be force-fed, and thats not good. They also won't let us go home for a break unless he's eating normally.

So, it's a constant battle of wills. At the same time...they don't want him eating junk food because of his sugars & triglycerides.

I have been begging, whining, pleading, bribing, arguing, demanding, reasoning.........did I say begging???? I can't afford the bribery every day either.

It really is a battle of wills. I have told him repeatedly that we will never go home unless he starts eating to build himself up. They will not let him go home with a tube down his throat....and they will have to do this to make sure he is getting the nutrients he needs!

Everybody tells me that Nabilone (medecinal marijuana) gives you the munchies....well it hasn't worked for him. Maybe we should give him the real thing....and give me the Nabilone!

Okay...I'll stop whining now!

66 days (but who's counting)

Hemoglobin is 74*

Platelets are 36*

Neutro-Polys are 0.01

(they have to hit 0.00 and then they will start to go up)

SUNDAY JUNE 1, 2008

The Nabilone is working! No more puking...but Mr. T hasn't started eating yet. This is his 10th day of fasting.

Yesterday he got his last chemo treatment....Asperaginase in the large muscle of his leg. He has been having fevers though..up to 40.7 which they have been treating with Tylenol. He is so medicated that all he does is sleep....while I do crosswords or read and try to make sure he's comfortable. Yesterday he received 750 ml of blood and more platelets.

Today he received more platelets and they started him on Voriconazole which is an anti-fungal drug.

Finally tonight he had a small box of Fruit Loops......I had to beg him to eat, as I know darn well that they will put a tube down his nose if he doesn't. Hopefully he can keep that down.

He is finally watching a litte bit of television which is a big improvement compared to the past week.

His counts haven't fully dropped yet....but they will.

Today his counts are:

Hemoglobin is 76*

Platelets are 17*

Neutro-polys are 0.46*

And he's starting to eat. That's a good sign!