Wednesday, July 30, 2008

ARE YOU MAN ENOUGH????



Don't you just love that advertisement? I saw it on the following website on Men & Nursing.




We need more men in this wonderful profession. Men have so much to offer and male nurses have been getting a bad rap for a long time. This is not a profession that is just for females...it takes guts & courage & strength to do this job. I know that Mr. T loves the male nurses at Cheo....he will listen to them more than he does the females. I think that has a lot to do with him missing & needing a male mentor in his life.
The same applies here at Toronto Sick Kids. Thank God for Francis & others. They have a wonderful rapport with the kids. The kids really need to have a good relationship with the nurses, as they are hospitalized for long periods.
Don't get me wrong.....the female nurses are great too! Mr. T gets along with all of them, some better than others. Age has nothing to do with it. You can have some young nurses who act very old...........and some older nurses who are very young at heart.
I'd be fibbing if I said I never had a run-in with a nurse or doctor....but fortunately those experiences are very few.

In every profession....you will meet someone who doesn't like their job....or shouldn't be working with kids....and unfortunately I have met a few....and Unfortunately...they met me! (Both Dr's & Nurses).

I'd better stop now before I put my foot in my mouth. Enough said!


Let me say though....that the majority of nurses I've met....like 99%.... are wonderful, caring, compassionate, hard-working, inspiring, funny, thoughtful,giving,intelligent people that I am very proud to know!

Tuesday, July 29, 2008

A LOT OF MEDICATION...

No wonder Mr. T is tired. This is a list of medication that Mr. T is taking...and this can change momentarily.
Antibiotics: vancomycin, tazocin, ciprocoxacin and metronidazole (flagyl).
He also takes Tacro which is an immune suppressant as well as benadryl, gravol and ativan as needed in his line. He takes nifedipine for high blood pressure and pantoprazole which is a high-class antacid. Then he gets hydromorphone to control pain (pump)...insulin and TPN & Lipids. All these medications...although needed have serious side effects & some have long-term side effects.
Mr. T's favorite DOC (drug of choice) is gravol. It calms his stomach & always helps him sleep. Some of the nurses tried to tell him that gravol & benedryl are the same....and he will argue with them. He prefers gravol........and when he takes it.......it ALWAYS makes me feel better too!


He gets platelets as well as blood every 2nd day or as needed.


GREAT BALLS OF FIRE!


Would you look at the size of that meatball? next to my cellphone? That was my lunch! I have never seen a meatball that big! Only $2.69 but very filling.
I bought it at the deli counter at the Dominion Store which is open 24 hrs a day.
It was really good! The sign said 'Greek Meatballs'. They are a mixture of meat and rice & very tender! Only thing missing is the chilies!
I can't wait till Mr. T can eat again....Toronto has so many wonderful foods to try.

DAY PLUS 12 - JULY 29, 2008


Mr. T's WBC (white blood counts) went down. They are 0.1 today.
He has been throwing up all day....and sleeping! He keeps throwing up blood....they think its a bleeding ulcer....what's next? They want to start a new medication to stop him from throwing up blood....but he doesn't want to take it. He told them in no uncertain terms to get lost....he wasn't going to be poked with anything else!! I told them to let him sleep...perhaps after a nap he would be in a better frame of mind. There is nothing I can say or do to make him feel better. Some days are like that...and yes cancer sucks, chemo sucks and it sucks to be him! Right now it sucks to be me too!
Now I'll stop whining!

Monday, July 28, 2008

REST....REPLENISH & RECOVER - DAY PLUS 11

Dr. D came by this morning while Mr. T slept....and he said this is the time to rest, replenish & recover. He also said that Mr. T 'just may be in the process of engraftment' as the white cells are 0.2??? Can that be possible...or is it a false reading?? they don't really know....but that would be really great though! It would be quite early as we are only Day Plus 11...but anything is possible! He will come by later and let me know if his neutropolys are up as well. There are people here who are a week ahead of us...and they have no counts whatsoever! The team keep reminding me that 'no 2 kids are alike' & that everyone is different. And yes...I will clutch that straw as tentative as it is!

Also he is no longer retaining fluid on board. Liver enzymes are slightly elevated...so they will keep a close eye on his liver.
The other day when he was peeing blood I called the night doctor on call to check Mr. T....and she had told me it was from the mucositis. This Dr. does work on all the floors not just Bone Marrow...so maybe that's why she wasn't too informed.
Well...I have always believed that nurses know best. Today a nurse told me in detail...that mucositis affects the gastric system....in other words...from the mouth to the butt. It cannot affect the penis or urine.
Mr. T's urine was brassy red from blood in his kidneys.....and he pukes up red which is the mucositis. Hopefully they can clear that up soon!

Sunday, July 27, 2008

DAY PLUS 10 - JULY 27, 2008

Today they tell me that it's not a 'low-grade infection' he has. His urea level is higher than normal. It's a SERIOUS infection....so they will do an ultra-sound later today in his room as they are worried about his kidneys! I have been telling them that in the past whenever Vancomysin was given...there was damage done to his kidneys...we ended up in ICU & Mr. T was on dialysis.....but what do I know eh???

Also after doing urine and blood tests......it's NOT the mucositis in his urine or penis. They say that the blood showing is from the kidneys....so more tests will have to be done today. No wonder he feels crappy & tired!

His kidney's are retaining fluid. They can tell this by his weight. He is not peeing out as much as he takes in. The nurse says he may have an extra quart of fluid on board??
They will give Mr. T more platelets today. He receives them every 2nd day.
He is taking 3 different antibiotics now....vancomycin every 18 hours...Tazocin every 8 hrs...and Ceprofloxacin every 12 hours.
He won't eat or drink....his mouth sore's and throat sores are bothering him. I can't even eat in front of him....just the smell of food will make him throw up. I have to go to the parents lounge to eat.
He has been sleeping a lot...and he passes the time either watching movies, painting or sketching and organizing his chaotic cards into a binder.
We could have had a video phone set up so that family could call us and see us in our room at Sick Kids and we could see them. After speaking to other parents...I decided not to. It may be a benefit for some...but not for others....especially the teenagers.
I know if his Papa spoke to him about fishing & hunting...or his dad or Uncle were there...Mr. T would be so homesick...he would cry & feel more lonesome than normal. Ignorance is bliss....sometimes!
Our waiting game continues....one day at a time!

Saturday, July 26, 2008

DAY PLUS 9 - JULY 26, 2008

Last night Mr. T threw up several times during the night and again this morning. They started him on Vancomysin...an antibiotic, as he has a low-grade infection. Last night while he bathed himself...he noticed blood around his penis....so I called the doctor. They said its mucositis as it can spread throughout your body....and suggested he drink a lot of liquids????? He's not drinking at all....he gets all his fluids through I.V.

Yesterday I had bought Mr. T the game cards he wanted called Chaotic. Today...while he slept...I went and got more cards and a binder w/pockets so he can keep his cards clean & organized. 401 Games is 2 blocks down on Yonge and has everything for gamers. I should be getting a discount with all the stuff I have bought there! You can find anything you want in Toronto. It's a wonderful big city that hardly ever sleeps.
This afternoon....Mr. T woke up and worked on his cards....organizing them and putting them in his album....but then he went back to sleep. He is taking a lot of medication right now...so sleep is the best cure! Hopefully...he will feel better tomorrow!

Friday, July 25, 2008

DAY PLUS 8 - JULY 25, 2008

What a crazy week! I'm so glad it's Friday....the mouth sore's continue to get worse each day. Now its difficult for Mr. T to drink anything even water....and you'd better believe when Mr. T can't eat or drink......he's not a Happy Camper!
They tell us that once his counts come back...the mouth sore's will disappear. Till then he controls the pain with the morphine pump. We continue with the foot soaks...mouth rinses & lots of morphine.
I had asked the Child care Specialist for Paint by Numbers for him. Sometimes when you do something like that...it can take your mind off your body...and the different aches & pains you're going through. Right now he's totally absorbed in the painting & much calmer.

DAY PLUS 7 - JULY 24, 2008

The mouth sore's are worse today...some in his throat which makes it difficult to swallow. Mood swings are worse too......so bad that I've been taking a lot of walks lately. Mr. T doesn't understand what's happening. He snaps at people...then cries because he hurt their feelings. Even when we assure him that we understand and it's okay...he feels so bad for mistreating or yelling at anyone. The nurses here are very patient & understanding & they encourage me to go for a coffee or take a break when Mr. T is acting in a difficult way. I've been to the Eaton Centre several times....as well as the huge Sears store there. Also...a few blocks away they have the World's Biggest Bookstore....(I'm in heaven)...this book store is a block long and 2 stories tall. You can browse there for hours!



Mr. T has a recurring infection in his big toe....so he has many foot soaks with saline...every 3 hours...followed with Polysporin & gauze.

Today Mr. T's mood lifted quite a bit. His Uncle had downloaded him a lot of good movies....and he really enjoyed THE LOVE GURU. He watched it 3 times....and laughed so much....I had to watch it too. Get ready to laugh your socks off!

DAY PLUS 6 - JULY 23, 2008

Mr. T is very crabby today. Crabby, cranky, angry, weepy & sleepy. Anything at all can cause him to cry and then he gets angry. No win situation. Even opening the light can cause him to yell that we startled him. These steroids play havoc with a person's moods and behavior. There is nothing positive to say about it. When Mr. T flies off the handle...I quietly leave the room and go for a walk or a coffee. We are just taking it one day at a time.

Wednesday, July 23, 2008

MUCOSITIS - JULY 22, 2008

Mr. T got mucositis today. We were expecting the mouth sores to start. He was very lucky so far. All you can do is follow good hygiene....and use mouth-rinses 4 to 6 times a day. Morphine is used for pain....and nothing else you can do about them. In time...when his counts start to rise...the mouth sores will go away on their own.




Cancer patients undergoing chemotherapy usually become symptomatic four to five days after beginning treatment, reaching a peak at around day 10, and then slowly improving over the course of a few weeks. Mucositis associated with radiotherapy usually appears at the end of the second week of treatment and may last for six to eight weeks.
As a result of cell death in reaction to chemo- or radio-therapy, the mucosal lining of the mouth becomes thin, may slough off and then become red, inflamed and ulcerated. The ulcers may become covered by a yellowish white fibrin clot called a pseudomembrane. Peripheral erythema is usually present. Ulcers may range from 0.5 cm to greater than 4 cm. Oral mucositis can be severely painful. The degree of pain is usually related to the extent of the tissue damage. Pain is often described as a burning sensation accompanied by reddening. Due to pain, the patient may experience trouble speaking, eating, or even opening the mouth.
Dysgeusia, or an alteration in taste perception, is common, especially for those who are receiving concomitant radiation therapy to the neck and mouth area. "Taste blindness," or an altered sense of taste, is a temporary condition that occurs because of effects on taste buds that are mostly located in the tongue. Sometimes, only partial recovery of taste occurs. Common complaints are of food tasting too sweet or too bitter or of a continuous metallic taste.

[edit] Diagnosis
Diagnosis is based on the symptoms the patient is experiencing and the appearance of the tissues of the mouth following chemotherapy, bone marrow transplants or radiotherapy. Red burn-like sores or ulcers throughout the mouth is enough to diagnose mucositis.

[edit] Treatment
Treatment of mucositis is mainly supportive. Oral hygiene is the mainstay of treatment; patients are encouraged to clean their mouth every four hours and at bedtime, more often if the mucositis becomes worse. Water-soluble jellies can be used to lubricate the mouth. Salt mouthwash can soothe the pain and keep food particles clear so as to avoid infection. Patients are also encouraged to drink plenty of liquids, at least three liters a day, and avoid alcohol. Citrus fruits, alcohol, and foods that are hot are all known to aggravate mucositis lesions. Medicinal mouthwashes may be used such as Chlorhexidine gluconate and viscous Lidocain for relief of pain. Palifermin, brand name "Kepivance", is a human KGF (keratinocyte growth factor) that has shown to enhance epithelial cell proliferation, differentiation, and migration. Experimental therapies have been reported, including the use of cytokines and other modifiers of inflammation (eg, IL-1, IL-11, TGF-beta3), amino acid supplementation (eg, glutamine), vitamins, colony-stimulating factors, cryotherapy, and laser therapy. Symptomatic relief of the pain of oral mucositis is provided by barrier protection agents such as "Gelclair." This viscous oral gel can be diluted and used as an oral rinse. The film forming agents within Gelclair coat the oral mucosa shielding ulcerated tissues and protecting exposed nerve endings.

[edit] Complications
Sores or ulcerations can become infected by virus, bacteria or fungus. Pain and loss of taste perception makes it more difficult to eat, which leads to weight loss. Ulcers may act as a site for local infection and a portal of entry for oral flora that, in some instances, may cause septicemia (especially in immunosuppressed patients). Approximately half of all patients who receive chemotherapy develop such severe OM that it becomes dose-limiting such that the patient's cancer treatment must be modified, compromising the prognosis.

Tuesday, July 22, 2008

DAY PLUS 5 - JULY 22, 2008

Today...Mr. T's platelets were 15...so the nurse gave him more platelets. Also his neutropolys are now at ZERO. When the neutropolys rise...I will know that the engraftment process starts...they tell me that could take a long time.

He was so itchy today - they say that's one of the side effects of the morphine. They gave him benadryl and that works instantly.
His mouth sores are bothering him. Using mouthwash helps a little and good oral hygiene as well.

Monday, July 21, 2008

DAY PLUS 4 - JULY 21, 2008

Today...the nurses installed a morphine pump...so that Mr. T can control it himself. He's happy about that. Now he no longer has to call a nurse and wait for the medication.
It was a good day! He still has some diarrhea...but its getting better. No fevers...means no infections. Right now...Infection is the enemy...we don't want or need any infections now.
His glucose is under control & he has no appetite while he is on TPN.
The day was spent watching movies and cartoons. Mr. T remains in good spirits.

DAY PLUS 3 - JULY 20, 2008

This is the smallest room I've ever seen. I think the main reason is that its much easier to control the air in a small room. In these isolation rooms...the air changes 500 times per hour. I sit in that black chair all day long...and at night I remove the chair..so that I can set up a cot in that space. It's a very tight squeeze. Then you have to lay on the cot in order to put a sheet on it...and if you need to go down the hall to a washroom...you have to scoot to the end of the bed in order to get out of the room. Oh and you also have to sleep in a hospital gown over your pajama's as well.

Although Mr. T still has diarrhea...he did eat some beef jerky today and a few sour candies.
They continue to give him morphine, gravol, ondanestrone, methotrexate, tacro, insulin and some chemo to offset the Graft versus Host.
Mr T is too tired to play his games...but he does watch television & sleeps a lot.

DAY PLUS 2 - JULY 19, 2008

Mr. T monitors his own sugar glucose. He has his own 'One Step' glucose meter and pokes himself 4 or 5 times a day. His glucose goal is between 6 & 12...and so far it's good. This way they know how to adjust his insulin levels.
Today he started having diarrhea. I expected this to happen...that's why they told us to bring triple underwear. They have given him Ativan in his line to help with the cramps. He also bathes himself everyday. There is no washroom in this small isolation room...only a potty chair.
After bathing...I change his sheets daily. He sleeps on a very comfortable mattress. It's a RIK mattress used for patients in long-term...extremely heavy but very comfortable.
So far...no fever or infections and for that I'm thankful. The first 2 to 3 weeks are critical. They also give him a bit of chemo for Graft versus Host disease as well as anti-rejection drugs. They tell me Mr. T is a very good patient. He co-operates, does his blood sugars when asked and keeps his body as clean as possible, washing well after using the potty, using toothettes to clean his mouth as well as doing his mouth rinses many times a day to safeguard against mucositis... mouth sores.
He cannot use his own toothbrush or toothpaste here...as a toothbrush can cause his gums to bleed. Even toilet paper can be rough....I had to buy wipes at Shoppers Drug Mart....they are softer and will keep the area cleaner. All these routine chore's does help to pass the time.
His neutropolys haven't hit bottom yet...but they will.....and then it will take quite a long time for them to come up once again. One day at a time!

DAY PLUS ONE - JULY 18, 2008

Today they started Mr. T on anti-rejection drugs like Methotrexate. As soon as he received it...he got sinus headache's, pain in his nose and eye's...which they gave him morphine for.


Although he is on tpn as well....he still has his appetite. He had waffle's today and Crystal Lite...otherwise he just wants to sleep. All these drugs and chemo cause him to be very tired. They monitor his sugar glucose every day as well as his weight. Since March 31st he has only lost 25 lbs which is very good. He still weighs 73k.

This is the vitamins he receives. It does look very yellow.











And this is the food. It looks like a thick white paste.

Saturday, July 19, 2008

DAY ZERO- JULY 17, 2008

It was a very busy day today. The nurse showed me how to wash up before I could enter the isolation room, clean nails, wash hands & put on a gown...each & everytime I walk in the room. I also had to wipe down all his games, play systems & personal things.

He received his bone marrow transplant at 2:40 p.m. I sat at Mr. T's bedside and we held hands and said a prayer...thanking the anonymous bone marrow donor for donating their marrow in the hopes that a child could live. Somewhere there is a donor with a sore hip...they are well aware that their bone marrow is going to a child somewhere. I would just like them to know how very thankful we are....without this marrow...Mr. T wouldn't have a chance. Now he has a very good chance....and for that I thank them from the bottom of my heart. I won't be able to know who that person is until Mr. T is cancer free....and that's 5 years. Then it will be up to them if they want to meet with Mr. T.


He received 5 bags of bone marrow.....875ml and it took exactly 4 hours. Along with that he received anti-rejection drugs. Everything went really well. The nurse monitored his blood pressure constantly as well as his vitals. When it was over...he ordered 9 toasts with peanut butter and milk....and I thought he wouldn't be able to eat? Every child is different...there are no 2 alike....and neither is the way they respond to a transplant.






Thursday, July 17, 2008

BONE MARROW TRANSPLANT DAY! JULY 17, 2008 - DAY ZERO.


THE TRANSPLANT
A day or two following the chemotherapy and/or radiation treatment, the transplant will occur. The bone marrow is infused into the patient intravenously in much the same way that any blood product is given. The transplant is not a surgical procedure. It takes place in the patient's room, not an operating room.
Patients are checked frequently for signs of fever, chills, hives and chest pains while the bone marrow is being infused. When the transplant is completed, the days and weeks of waiting begin.

ENGRAFTMENT
The two to four weeks immediately following transplant are the most critical. The high-dose chemotherapy and/or radiation given to the patient during conditioning will have destroyed the patient's bone marrow, crippling the body's "immune" or defense system. As the patient waits for the transplanted bone marrow to migrate to the cavities of the large bones, set up housekeeping or "engraft," and begin producing normal blood cells, he or she will be very susceptible to infection and excessive bleeding. Multiple antibiotics and blood transfusions will be administered to the patient to help prevent and fight infection. Transfusions of platelets will be given to prevent bleeding. Allogeneic patients will receive additional medications to prevent and control graft-versus-host disease.
Extraordinary precautions will be taken to minimize the patient's exposure to viruses and bacteria. Visitors and hospital personnel will wash their hands with antiseptic soap and, in some cases, wear protective gowns, gloves and/or masks while in the patient's room. Fresh fruits, vegetables, plants and cut flowers will be prohibited in the patient's room since they often carry fungi and bacteria that pose a risk of infection. When leaving the room, the patient may wear a mask, gown and gloves as a barrier against bacteria and virus, and as a reminder to others that he or she is susceptible to infection. Blood samples will be taken daily to determine whether or not engraftment has occurred and to monitor organ function. When the transplanted bone marrow finally engrafts and begins producing normal blood cells, the patient will gradually be taken off the antibiotics, and blood and platelet transfusions will generally no longer be required. once the bone marrow is producing a sufficient number of healthy red blood cells, white blood cells and platelets, the patient will be discharged from the hospital, provided no other complications have developed. BMT patients typically spend four to eight weeks in the hospital.
WHAT A PATIENT FEELS DURING THE TRANSPLANT
A bone marrow transplant is a physically, emotionally, and psychologically taxing procedure for both the patient and family. A patient needs and should seek as much help as possible to cope with the experience. "Toughing it out" on your own is not the smartest way to cope with the transplant experience.
The bone marrow transplant is a debilitating experience. Imagine the symptoms of a severe case of the flu - nausea, vomiting, fever, diarrhea, extreme weakness. Now imagine what it's like to cope with the symptoms not just for several days, but for several weeks. That approximates what a BMT patient experiences during hospitalization.

During this period the patient will feel very sick and weak. Walking, sitting up in bed for long periods of time, reading books, talking on the phone, visiting with friends or even watching TV may require more energy than the patient has to spare.
Complications can develop after a bone marrow transplant such as infection, bleeding, graft-versus-host disease, or liver disease, which can create additional discomfort. The pain, however, is usually controllable by medication. In addition, mouth sores can develop that make eating and swallowing uncomfortable. Temporary mental confusion sometimes occurs and can be quite frightening for the patient who may not realize it's only temporary. The medical staff will help the patient deal with these problems.
HANDLING EMOTIONAL STRESS
In addition to the physical discomfort associated with the transplant experiance there is emotional and psychological discomfort as well. Some patients find the emotional and psychological stress more problematic than the physical discomfort.
The psychological and emotional stress stems from several factors. First, patients undergoing transplants are already traumatized by the news that they have a life-threatening disease. While the transplant offers hope for their recovery, the prospect of undergoing a long, arduous medical procedure is still not pleasant and there's no guarantee of success.
Second, patients undergoing a transplant can feel quite isolated. The special precautions taken to guard against infection while the immune system is impaired can leave a patient feeling detached from the rest of the world and cut off from normal human contact. The patient is housed in a private room, sometimes with special air-filtering equipment to purify the air. The number of visitors is restricted and visitors are asked to wear gloves, masks and/or other protective clothing to inhibit the spread of bacteria and virus while visiting the patient. When the patient leaves the room, he or she may be required to wear a protective mask, gown and/or gloves as a barrier against infection. This feeling of isolation comes at the very time in a patient's life when familiar surroundings and close physical contact with family and friends are most needed.
'Helplessness" is also a common feeling among bone marrow transplant patients, which can breed further feelings of anger or resentment. For many, it's unnerveing to be totally dependent on strangers for survival, no matter how competent they may be. The fact that most patients are unfamiliar with the medical jargon used to describe the transplant procedure compounds the feeling of helplessness. Some also find it embarrassing to be dependent on strangers for help with basic daily functions such as using the washroom.

The long weeks of waiting for the transplanted marrow to engraft, for blood counts to return to safe levels, and for side effects to disappear increase the emotional trauma. Recovery can be like a roller coaster ride: one day a patient may feel much better, only to awake the next day feeling as sick as ever.
LEAVING THE HOSPITAL
After being discharged from the hospital, a patient continues recovery at home (or at lodging near the transplant center if the patient is from out of town) for two to four months. Though patients will be well enough to leave the hospital, their recovery will be far from over. For the first several weeks the patient may be too weak to do much more than sleep, sit up, and walk a bit around the house. Frequent visits to the hospital or associated clinic will be required to monitor the patient's progress, and to administer any medications and/or blood products needed. It can take six months or more from the day of transplant before a patient is ready to fully resume normal activities.
During this period, the patient's white blood cell counts are often too low to provide normal protection against the viruses and bacteria encountered in everyday life. Contact with the general public is therefore restricted. Crowded movie theaters, grocery stores, department stores, etc. are places recovering BMT patients avoid during their recuperation. Often patients will wear protective masks when venturing outside the home.
A patient will return to the hospital or clinic as an outpatient several times a week for monitoring, blood transfusions, and administration of other drugs as needed. Eventually, the patient becomes strong enough to resume a normal routine and to look forward to a productive, healthy life.
LIFE AFTER TRANSPLANT
It can take as long as a year for the new bone marrow to function normally. Patients are closely monitored during this time to identify any infections or complications that may develop.

Life after transplant can be both exhilarating and worrisome. On the one hand, it's exciting to be alive after being so close to death. Most patients find their quality of life improved after transplant.
Nonetheless, there is always the worry that relapse will occur. Furthermore, innocent statements or events can sometimes conjure up unpleasant memories of the transplant experience long after the patient has recovered. It can take a long time for the patient to come to grips with these difficulties.
IS IT WORTH IT?
Yes! For most patients contemplating a bone marrow transplant, the alternative is near-certain death. Despite the fact that the transplant can be a trying experience, most find that the pleasure that comes from being alive and healthy after the transplant is well worth the effort.

Wednesday, July 16, 2008

WEDNESDAY - JUNE 16, 2008

Today Mr. T was sad. When I asked him if he was nervous about tomorrow and the transplant...he started to cry. I told him that it wouldn't hurt at all...it's just like getting blood or platelets through your line. That's not the scary part at all....the worst part is in the recovery...and the waiting to see if his body will accept the new bone marrow. I'm nervous as well...but I don't show it. I have complete faith in these doctors. They know what they're doing. They will move us by noon tomorrow to an isolation room...as it will take 4 to 5 hrs to give him the bone marrow transplant through his line.
I will post more information about the bone marrow transplant later. Right now I have some packing to do...and storing what I can in the locker they loaned me. We won't be able to take all our things into the isolation room.
I want to thank everyone who has been praying for Mr. T. We appreciate each and everyone of you who have given us strength & hope on his journey. Thank you.

TUESDAY - JUNE 15, 2008


This is the last day for the chemo! For the past 2 days Mr. T has not eaten much, and he has lost weight as well. They make sure he urinates every 2 hours whether he wants to or not...as this chemo can cause a lot of harm to his kidneys. He is very cranky and short-tempered. When he's like that I go for a walk & have a coffee. I imagine I'd be very cranky as well if I had to go through just half of what he has been through in the past 4 months.
He is also very tired from the effects of chemo. Tomorrow is a day of rest....he won't get any medication or insulin.

Tuesday, July 15, 2008

SUNDAY - JULY 13, 2008

Not a very good day. Mr. T did eat several times...but it didn't stay down for long. That is wicked stuff. He only gets the chemo once a day but it sure isn't pleasant. The steroid he is getting also causes mood swings...from angry to cranky and back. Hopefully this will be over soon.

SATURDAY - JULY 12, 2008 'NASTY CHEMO'

Today Mr. T starts the nasty chemo called 'cyclophosphamide'. He will get this drug once a day for 4 days. There is nothing nice to say about this drug...it's a poison...but it's necessary. It's a very strong chemo drug...meant to destroy his immune system in preparation for his bone marrow transplant. Along with this drug...Mr. T will also take Dexamethasone which is a steroid.
Many people taking cyclophosphamide do not have serious side effects. Side-effects include chemotherapy-induced nausea and vomiting (CINV), bone marrow suppression, stomach ache, diarrhea, darkening of the skin/nails, alopecia (hair loss), changes in color and texture of the hair, and lethargy. Hemorrhagic cystitis is a frequent complication, but this is prevented by adequate fluid intake and Mesna (sodium 2-mercaptoethane sulfonate). Mesna is a sulfhydryl donor and binds acrolein.
Cyclophosphamide is itself carcinogenic, potentially causing transitional cell carcinoma of the bladder as a long-term complication. It can lower the body's ability to fight an infection. It can cause temporary or (rarely) permanent sterility. Although it is used to treat cancer, it may increase the risk of developing another form of cancer, sometimes months to years after treatment.
Other (serious) side effects include:
pink/bloody urine,
unusual decrease in the amount of urine,
mouth sores,
unusual tiredness or weakness,
joint pain,
easy bruising/bleeding,
stopping of menstrual periods,
existing wounds that are slow healing.


Today Mr. T ordered breakfast from the menu...then he had a small pepperoni pizza followed by a 6 inch meatball sub & later he had 2 hotdogs from the vendor. Right after he threw up everything! They gave him gravol...and then morphine.

Later he asked me to get him Timbits which he kept down. I had thought or believed that he would be a lot sicker...but so far...so good! Every kid is different. Some kids are very sick when they are on this drug...and others seem to sail through it. You just never know!

GIRL'S NIGHT OUT........

Today my neice Jo & her daughter...came to see us. I met them at the Westin Hotel at 6:30. It's been 2 years since I saw them last. She had asked if this was a good time to visit and I told her that actually...this was the best time. Mr. T will get his bone marrow transplant on the 17th...where they will move us to an isolation room...and he won't be leaving that room till he is well....perhaps a month...maybe longer. That goes the same for me....I will be in isolation with him. If he is not well, I won't be leaving him alone. Right now he hasn't started the nasty chemo yet....he's eating & playing his games...so its the perfect time for company. Also when he enters that room...his immune system will be wiped clean from the chemo....and it won't be a good idea for me to have company & take a chance on bringing in any germs or colds.
I will have a room at the Westin Hotel till August 3rd....or until I can get a room at Ronald Mcdonald House up the street. There is a long waiting list at Ronald Mcdonald for a room there. They have 28 rooms and all of them are booked solid. Every day you have to call and let them know that you are still on the waiting list. If you don't call.....they will assume you made other arrangements.
You 'have' to have a room while you are here for the 3 months. After being here for a week...you do want to have a good nights sleep and shower...and you need a place to store your clothing and bathroom stuff.
Once Mr. T goes into an isolation room on the 17th...there will be no room for my stuff. That's one of the reasons why you need to have a room while you are here.
We slept at the Westin the 1st night we arrived in Toronto....and I stayed there with my neice & grand-neice when they arrived as well. Otherwise I stay with Mr. T in his room.

My neice took me to the 'Old Spaghetti Factory' to eat. We had wine and pasta...and I enjoyed every bit of it. It was so nice seeing her and her daughter again. I would post a pic...but I don't think she would appreciate it. We had a great time 'catching up'...a lot of laughs and girl talk. Later we walked for miles before calling it a night. At the Westin we ended up talking till we fell asleep.


Early Friday we had breakfast at Sick Kids...and visited Mr. T. My neice was allowed to visit him as I had her name on the visitor's list....but her daughter wasn't allowed on the unit. Mr. T was allowed to go and see his cousin though in the Parents Lounge at the end of the hall. They just don't want kids on the unit itself. He really enjoyed their visit...he didn't want the visit to end. My neice went and bought him a double whopper at Burger King....and we talked & laughed for awhile. Mr. T was in a great mood...and happy to get company.
Later when Mr. T was playing his games on the computer....we walked over to the Eaton Centre. My grand-neice is 13 (going on 16) so she had some serious shopping to do. She had saved up her baby-sitting money and needed summer clothes. Right across from the Eaton Center is a store called 'Forever 21' ...great clothes at cheap prices. The store was packed with teenage girls.
I bought a dress and a skirt for my granddaughter....and my grand-neice bought herself some very nice clothes. She has great taste for her age.
Later we stopped at Mr. Green Jeans to eat. I had to try the 'edamame' appetizer. Hot soybeans with seasalt...and then had a sirloin burger. Great food. I remember going there 16 yrs ago.
My neice gave me a $100 gift certificate to Chapters....and it didn't take me long to spend it. I bought 4 books of Jodi Picoult's that I haven't read yet. Once you read one of her books...you are hooked. I bought Mr. T some art books and my neice got him sketching pencils, sketch books and erasors at Currys art store on Yonge street. We must have walked for miles and miles that day...and we all have blisters to prove it.
We went back to Sick Kids and spent more time with Mr. T and gave him the gifts we bought. He likes to sketch his gaming hero's as well as Manga characters...and now is the time for it while he sits in isolation.
Later we went back to the Westin to drop off our things....and then decided to enjoy the night life. Again we walked for miles....and we ate at the International Food Festival & visited all the vendor booths there. Next time I'll wear my sneakers. Although it was quite late...there were crowds of people everywhere. Toronto is a tourist mecca.....there is so much going on all the time...we saw mime's, and street musicians all over...vendor's and food at every corner. I'm sure we burned off everything we ate and more.
But what a great time I had....I haven't had a girls night out in ages. I was sorry to see my neice & grandneice leave the next day...but I know I'll be seeing them again soon. My granddaughter will be going to stay with my neice Jo next weekend. She'll be staying with them for 6 weeks...going to daycamp with her cousin...and enjoying her summer. My neice will also bring the girls to see me & Mr. T every 2nd or 3rd week...as she only lives an hour away. There will be more 'Girl's nights out' coming up. I hear the Caribana is coming to town early August and I hope I get to see it....people come from all over the world for the Caribana parade.
Everything depends on the success of Mr. T's bone marrow transplant. Let's hope he sails smoothly through this ordeal with little or no complications. Then we'll have something to celebrate!

THURSDAY - JULY 10, 2008


Mr. T feels much better today. He is getting used to the medication and so far...he's not sick. He still has pain in his jaw from the extraction and fillings last week...and he gets codeine for that.
Today he had a good day! The male nurse came and played Halo 3 with him several times today...so Mr. T is starting to enjoy himself.
When I saw he was busy with his game....I went to do the laundry. The interlink nurse at Cheo had arranged for the parents here to do their laundry at The Residence, which is a hotel across the street from Sick Kids. There is no laundry facility here at Sick Kids.
As long as you have a 'Parent Pass' from Sick Kids...they will let you do your laundry there. It is not very expensive. It costs $2.25 to wash and $1.75 to dry your clothes...and the dryer lasts an hr.
Mr. T is eating well and sleeping well. It's a good thing the machine's beep loud.....as I have to wake up and use the call-bell to let the nurse know. Mr. T can sleep through anything..but of course...he's a teenager now!

TUESDAY - JULY 8, 2008

It's only our 3rd day here...and Mr. T is homesick. He has been away from home for more than 100 days now...and he doesn't like it here. He doesn't want to do anything but stay in bed.
Although he is on the Bone Marrow Unit...he can walk the halls...go to the playroom when its open or watch a movie. But he doesn't want to. He wants to stay in bed with the computer & watch television at the same time. He says the only good thing about this hospital is the food.

I think he's worried about the bone marrow transplant. I have assured him that everything will work out...but I know its normal to worry.

At Cheo...he didn't like the kid's menu...there weren't too many choices....but here at Sick Kids they have a great menu as well as restaurants to choose from. There are so many choices....it's hard to make up your mind.
While we are in Room 70 in the step-down room...he can eat anything he wants. Once he has his bone marrow on the 17th...he won't be able to. He will only eat what is on the menu. I won't be able to bring him in food and he won't be allowed take-out or hot-dogs because of bacteria.
I took picture's of the menu so you can see the choices he has. He can eat off this menu 'Only' from the 17th of July on....


















Mr. T knows that he can't have restaurant food after the 17th so he is taking advantage of it. The first day he ordered tortilla's on the menu....and made his own tortilla's with scrambled egg and ham and bacon. He also had 'make your own taco's'. They send up whatever you order and you can make it yourself. They also have 'make your own pizza, and pasta. I will bring back a copy of this menu to Cheo...as they are looking into changing their menu.

Mr. T loves BurgerKing as well. I've been going down every day to get him a double whopper combo or a triple whopper. He may as well enjoy the food while he can.

Also I think it's a law in Toronto that once you visit you must have a hotdog or Italian Sausage at a vendor. They have these carts everywhere in Toronto. You can get a footlong hotdog for $2.50 and a sausage is $3.00.
Don't bother telling us what the ingredients are...they are great!

You can be sure when Mr. T is not having Whoppers...he's having hotdogs.
















Toronto is definitely a 'foodies' heaven. Everywhere you look are restaurants & vendors. People walk the streets eating or drinking & talking on cell phones. This is fast-food paradise...and fitness centers everywhere as well. I think they're trying to tell us something. You want to eat - you have to pay the price!

MONDAY - JULY 7, 2008

Today Mr. T starts treatment.
He was given Busulfan as well as Phenytoin.
Busulfan is a chemotherapy drug that is a cell cycle non-specific alkylating agent (slows the growth of cancer cells). More specifically it belongs to a subclass of alkylating agents known as alkyl sulfonates. Currently, its main uses are in bone marrow transplantation, especially in chronic myelogenous leukemia (CML), where it is used as a conditioning drug. Busulfan can control tumor burden but cannot prevent transformation or correct cytogenic abnormalities. Though not as common, it may also be used for Chronic Lymphocytic Leukemia (CLL).
He will be receiving Busulfan for 4 days. So far the medication is not making him sick.
Mr. T has a wonderful appetite....and although he is homesick & wants to go back to Cheo...he is still enjoying his X-box as well as the computer games., and of course the food.

WE MEET THE TEAM & GET INTERNET...

Early Monday we met the team. Dr. G is the primary doctor on the bone marrow transplant team. I had already spoken to him at Cheo when I had a tele-conference meeting a few weeks ago....he inspires confidence & takes the time to answer any & all questions. Now I got to meet him in person as well as the other doctors on the team, and various other specialists from Endocrinology and Infectious diseases. It's difficult to remember everyone's name...but in time, I'm sure I will. We also met a few people from the Child care specialists who try and make a child's stay here at Sick Kids as stress-free as possible. One of them took Mr. T on a tour so he could see the Starlight Room on the 9th floor. This is a safe play area where kids can go on-line or play X-box with other kids or do 'Arts & Crafts'. He can also borrow movies and books as needed.

They also have 'music therapy' here. What is it? Music therapy is the use of music to promote, maintain & restore psychological, physical, emotional & spiritual health. It is a recognized professional discipline in over 70 countries worldwide. Ruth Roberts is an accredited music therapist at Sick Kids. She plays the guitar, piano & flute. Any child here can benefit from music therapy. Activities may include singing, songwriting, playing instruments, story-telling, improvising, listening, drawing or moving to music. During the session, a care-giver can take a much-needed break, go for a walk or do their laundry. As soon as Ruth heard that Mr. T is interested in guitar lessons...she loaned him a guitar to practice with. Mr. T is quite good so far. He did take guitar in Junior High for a few months and I can see he has natural talent for it.

When I told the Child Care Specialist that Mr. T enjoyed sketching...she brought him a sketch pad so he can draw while he's here. Everyone is bending backwards to make Mr. T's stay here as comfortable as possible. He keeps comparing Toronto Sick Kids to Cheo as that's the only hospital he's ever been at. Hopefully in a few days he will change his mind and see that this is a very nice hospital...only bigger.

At first it was difficult to get hi-speed internet...but it's very important to have it while you are here. While away from home...it is the cheapest way to keep in touch with loved one's and friends. Rogers was too expensive...they charged a set-up fee as well as a package deal, and so was Distributel. Opening a new account with Bell would be too expensive. I would have to open a new account as well as take a package deal.

Also Mr. T has a couple of computer games that he enjoys which cost me $60 for a year membership and from time to time we upgrade his game with new characters or weapons.

We finally found a cheaper alternative. Toronto Hydro has a site called onezone.ca that charges $30 a month for high-speed, with no set-up fee or contract. Yippee!

So far so good! One day at a time!

MONDAY - JULY 7, 2008 - ROOM WITH A VIEW...















This is our room at Toronto Sick Kids. As you can see it's quite a big room. Mr. T has a television set, X-box and DVD player as well as a ton of the latest games., and of course his laptop. Candlelighter's is an organization in Ottawa that helps families with kids that have cancer. They have loaned Mr. T a Dell laptop while he is in treatment. He can use the laptop till he is able to attend school full-time. He loves it. Right now he spends more time on his laptop than gaming. He talks to friends & family on MSN as well as play interactive games on-line.
And the cot I sleep on is very comfortable compared to the bed-chair at Cheo. It goes to prove that you can sleep just about anywhere if you're really tired.
On the left is the view from Cheo when we were on 4North for many months. We had a view of the rooftops!!! Finally...(at right) this is the view from Toronto Sick kids on the 8th floor. I can look out for hours just watching the traffic and people coming & going. There are many hospitals in this area. The Toronto General is right across and just down the street is the Mount Sinai Hospital.

JULY 6, 2008 - TORONTO SICK KIDS.

Toronto Sick Kids is a huge hospital compared to Cheo. The grandkids were amazed at the sheer size of it. On the main floor they have a large cafeteria, The Terrace... where you can choose to eat from many different restaurants. They also have Starbucks, Tim Horton's, BurgerKing & a soup & sandwich restaurant.
The elevators in the Atrium are made of glass so as you go up to different levels you can see below you. It's modern, kid-friendly and very clean.
We decided to have breakfast before admitting Mr. T.
Mr. T refused to eat. He decided at first glance that he was having none of this hospital. We begged & pleaded & nagged....but nothing doing. I think Mr. T was afraid...and I don't blame him. The size alone of Sick Kids can be intimidating for someone coming from a small hospital. Finally we let him sit at the terrace, while we went to get breakfast. When we got back with our food...Mr. T was just sitting there looking so alone and sad. He wanted to go back to Cheo.
His Uncle assured him that this was just another step on his journey to good health. He explained to him that this transplant was necessary for Mr. T to have in order for him to live a long, healthy life.
I told my grandson...that I was well aware of his feelings of sadness & anger...and that he had every right to feel that way...but we were a team...and the plan was to get Mr. T well and get him home....and we needed him as the primary team member to co-operate & help us get the plan on the road. I told him this could be a wonderful experience or a dreadful one...depending on our attitude. Is our glass half-empty or half-full? It didn't take long for Mr. T to decide. He was back in good spirits in no time at all.
As soon as we got up to 8B - the Bone Marrow Unit....they were expecting us. Right away they showed us to our room. And we're in Room 70! At Cheo...we had Room 7...and at Ronald Mcdonald House we had Room 7. It seems the number 7 keeps coming up! They call this a 'step-down' room. We will be in this room till he has the bone marrow transplant on July 17th.
I am able to sleep in this room. They have a steel built-in cot with a mattress for me to sleep on...and drawers underneath for storage. He also has a bathroom which I can't use...because when you are receiving chemo....your urine is very strong...and it could be dangerous to use the same facilities. There is a shower & bathroom in the hallway for parents & caregivers to use.
My son & his wife are allowed on the Unit...but sadly...Mr. T's sister wasn't. She had to wait outside the Unit while T's uncle set up his X-box and games. Only people on the visiting list are allowed to enter the unit...no children under 18. They feel it might compromise the health of the children here. After all Mr. T has been through....we wouldn't want to endanger his health at this point. We're on our way....to new beginnings!

JULY 5, 2008 - TORONTO

I woke up at 6 a.m., to clean our room at Ronald Mcdonald House and pack the rest of our things. Again we had to say good-bye to the wonderful parents I had spent a lot of time with at RMH and the friendly staff here all wishing us success in Toronto.
Mr. T's uncle & aunt came to pick us up at 11 a.m with Mr. T's sister of course. I wanted his sister to come along with us so she could see where we would be living for the next 3 months.
We managed to stuff 3 months of living in his trunk & of course I had to leave some books behind. It was a gorgeous day. I sat in back with my 2 grandkids and we enjoyed the long drive to Toronto. Half-way there we stopped at Denny's to eat & use the facilities. After 3 months at Cheo...it was so nice to see people & traffic everywhere.
Because we stopped several times along the way...we arrived about 7 p.m. and spent the night at the Westin Harbourfront Hotel in Toronto. What a beautiful hotel...right on the waterfront.
We had pizza and later took a walk along the Queen's Quay and watched the boats come and go....and later had ice cream cones. Along the boardwalk we saw mime's and vendors & musicians entertaining the crowds of people. The grandkids enjoyed it immensely as they never really spent much time in a city.
Everybody was hot & tired...after we took our shower....it didn't take us long to fall asleep in an air-conditioned hotel room. Tomorrow we get to see Toronto Sick Kids for the 1st time.

JULY 4, 2008 - LAST DAY AT CHEO.


It's our last day today! We have been here at Cheo for 96 days. Mr. T is sad as he doesn't want to leave....he likes it here & wishes he could have his bone marrow transplant here, but they don't do transplants. There is a good possibility that we will come back here after his transplant.
The nurses gave him blood to make sure his levels are high enough to travel.
We are going over to Ronald Mcdonald House later today.
It's always sad saying good-bye. Mr. T has known the nurses here since he was 10 yrs old...to many children here...Cheo is like a 2nd home. When you stay at a hospital for any extended time...you get to know the nurses really well. They have been great! There is a wonderful rapport between the kids and the nurses & doctors that you don't see anywhere else!

Thursday, July 3, 2008

JULY 3, 2008


Mr. T was starving today. He had to fast from midnight till 1 p.m today till they brought him down to surgery. He was in surgery till 4 p.m....and they brought him to his room at 4:45. He had a bone marrow aspiration done and then had some cavities filled and one extraction. The nurses told him soft foods only for 2 days but at 6 he had 2 double cheeseburgers and fries from Mcdonald's and he ate everything. You just can't keep a hungry boy down! I'll know the results of his bone marrow test tomorrow. As far as I know...if the results are good.....we can go to Ronald Mcdonald House for a day....and leave from there and go to Toronto on Saturday.
They tell me his counts are normal...or they are to be expected:
Hemoglobin is 74*
Platelets are 93*
Neutro-polys are 13*
Did u notice his neutro-polys were 0.55 yesterday and today they are only 0.13*. What's with that? I'll have to speak to his Dr. tomorrow.
Today is our 95th day here......and we are anxious to move on.

JULY 2, 2008


Mr. T just wants to sleep all day! He wasn't a very Happy Camper when he found out they had 3 tests arranged for him. In the morning we went down for an ultrasound of his abdomen. Later in the afternoon he had another echo-cardiogram done as well as an ECG. All these tests have to be current before we can leave this week.
I can understand how he feels sometimes. He just wants all this to end. I keep telling him we're half-way there...you can't give up now! He's extremely sore in the chest area, and does not like being prodded and poked constantly. There are some mornings I wish I could sleep in as well!
Wow! His neutro-polys are flying!
Today's counts are:
Hemoglobin is 77*
Platelets are 102*
Neutro-polys are 0.55*

Wednesday, July 2, 2008

CANADA DAY....JULY 1, 2008


Today is Canada Day...and the weather is beautiful. Lately it's been raining every single day in Ottawa. I swear the weather is fixed....and we know who's fixing it. Mr. T is not in a party mood. He is suffering more today than yesterday. You can't go near him.... if a nurse touches him...he's screaming in pain and hollering for morphine.
And we have a VERY GOOD REASON TO CELEBRATE! His neutro-polys went from 0.15 to 0.69 OVERNIGHT!
Now that's a very good reason to sing and dance....but Mr. T couldn't care less.
He really did kick up a fuss when they insisted that he had to go for sinus x-rays. He didn't even want to go by wheelchair or leave his bed at all. I really don't blame him.....but there is so much to do and so little time left.
His counts for today are:
Hemoglobin is 79*
Platelets are 67*
Neutro-polys are 0.69
At least I have a reason to celebrate CANADA DAY!

MONDAY. JUNE 30, 2008

Today.....although his neutro-polys were only 0.15....they went ahead and took out his port and put in a broviac. Guess they didn't want to wait till it was 0.2 We don't have much time left before we go to Toronto...and they want to make sure he heals well. Mr. T went into surgery at 10 a.m. and didn't come out till after 2 p.m. I was wondering what was taking him so long....when Dr. Ruben had told me it should only take an hour and a half.
Apparently when his Port came out...he tried unsuccessfully to put in the Broviac on the same side...but he couldn't. Some blood vessels had collapsed so he had to put the Broviac into the right side of his chest.
Mr. T was extremely sore and on morphine all day. His chest was all bandaged up on both sides...and he refused to eat or drink.
He slept all day on his back.
Today his counts were:
Hemoglobin is 85*
Platelets are 53*
Neutro-polys are 0.15*
It's going to be a rough night!

SUNDAY, JUNE 29, 2008

Neutro-polys are doubling. Today they are 0.10. That is great! Hopefully they will be high enough this week to get his broviac in before we leave for Toronto.

Today his counts are:
Hemoglobin is 85*
Platelets are 40*
Neutro-polys are 0.10
Today we are here 91 days......and Mr. T is not a Happy Camper at all! He was really hoping to get some time home before our admitting date. Well...that's not going to happen. We will leave straight from here on Saturday the 5th...in order to be admitted at Toronto Sick Kids on July 6th.
No.....Mr. T is not taking it well. After 3 months here mainly in isolation....he knows he will have to go through another 3 months there in isolation, barring all complications. And the Oncology team 'insists' that he knows what he will be going through..and it won't be fun. He knows he will have to get much sicker in order to get better. He is not looking forward to the trip or the stay at Sick Kids. I don't blame him. He has the right to his pain and anger & frustrations. No child should go through this....but unfortunately....many of them do. After this bone marrow ordeal....I hope & pray that Mr. T has many great years ahead of him.

Tuesday, July 1, 2008

FRIDAY, JUNE 27, 2008


Today...his neutro-polys are 0.05
This is going really slow. Not much to do but wait and hope.
Hemoglobin is 92*
Platelets are 30
Neutro Polys are 0.05*
Mr. T's appetite is still good...and his glucose is under control.