On the Positive

I found this site on the internet today. I think I've seen it before but I've never stopped to take a look before. It's managed by a long time survivor of retinoblastoma and she wanted to dedicate a site to the positive things that have come in her life from a vision impairment and retinoblastoma. We found it helpful today.

http://retinoblastomafocus.com/

We're Going To Disney World!!

We've heard back from Make a Wish and we get to go to Disney World in March!! This was our first choice of dates. Hopefully Gracie will be cancer free by then and this will be a celebratory wish trip. The girls are all super excited, our son (being only 15 months) seems rather indifferent.

As Gracie's counts are so good today she got to come to church for the first hour. Usually James and I take turns taking the 2 oldest girls. It gets really lonely not being a complete family at church, so on the odd day when we can all go together it's a really wonderful experience. 

The more sober news from this week is that we've been trying to figure out how well Gracie is able to see out of her right eye. It seems the vision has definitely deteriorated since she began treatments. A few days ago I didn't think it was really functioning at all any more. I now don't think that's the case, but I still think it's more impaired now than it was 3 months ago before she started treatments. My concern is that if the vision is already toast in her right eye why are we going to put her through the pain of having another subtenon injection. We have a lot to discuss with both Dr. O here and Dr. P in Houston. I want to talk to both of her ophthalmologists before we make any decisions, but because it's been a holiday week I haven't been able to get a hold of anyone. Really a lot depends on what is seen in her EUA on Thursday morning. But if there is no change again this Thursday we think we'll consider enucleation (removal of the eye) rather than putting her through another subtenon injection. It's just so painful. She will continue to get 3 more months of systemic  chemotherapy regardless of what our decision is. We don't want to do radiation as it increases her odds of developing further cancers. She's already got a 50% chance of getting cancer again, we don't want to make it a sure thing. 

We love our little girl. I can't imagine loving her more than I do, yet at the same time I know that God does. He won't make her go through anything that isn't in her best interest. I know he's capable of performing any miracle, regardless of how big or little it is. He can do anything. He can take this cancer away from her, if that's what is best for Gracie. It's hard sometimes to keep an eternal perspective, but in it there is peace. God has a plan and someday this will all make sense, and we'll be grateful that God knows the end from the beginning and helps us through our shortsightedness. 

"Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths." Proverbs 3:5-6

Stephanie

Yesterday's counts

TW (total White) - 6.4

Hgb - 8.7

Platelets - 130

ANC - 1216

The counts came up quite a bit! She is almost to the normal range now!

Transfusion day

OK- I know this is out of order a bit but I just uploaded the pictures from my camera. So below are some pictures from Gracie on November 20, 2008 when she was at the cancer clinic and received a transfusion of 1 unit of platelets (whatever that really means). In these pictures her eye is more swollen than it had been at any other time during this round of chemotherapy. Likely because her blood counts are low.Claudia (the child life specialist at the clinic) and Gracie. Gracie adores Claudia and asks her to get the Sammie doll every time we enter. Claudia is wonderful at helping the kids whenever they are going to get poked or prodded or just need a friendly smile!

Gracie loves her courage beads and was so proud to start wearing them.

She is especially proud of the butterfly and the sun beads. These are special beads for the two injections she has received in her eye. She was able to chose from a whole bunch of different pictures for that event. The rest of the beads are a specific color for the specific procedure that has been done. She has lots of black and silver for all of her pokes!

This is Gracie having lunch at the clinic. Apparently the mac and cheese is wonderful! She seems to be enjoying her popsicle too! The mac and cheese is made by a lady whose daughter had used the cancer clinic. The lady now owns a bakery and donates mac and cheese to the cancer unit for the patients and their families. Stephanie said it was pretty good and Gracie ate it all up so we are grateful for this lady's generosity!

Thanksgivings almost here!

Gracie likes to talk on the phone! This is last Saturday (two days after her transfusion).
Isn't she cute! It made me sad though to see the milky area in her right eye. The reminder of such a terrible disease is never a welcome sight.
Gracie and her gorgeous mom!
This is Gracie with her courage beads. She loves to wear them but has learned that the necklace can break!

Well, things have been fairly calm since Gracie's transfusion on Thursday last week. I have been pretty busy with school and work and Stephanie and the kids have been on holidays and getting ready for Christmas. I know it is a bit early but our kids found some Christmas decorations in the garage and it kind of snowballed from there. Now our tree is up and Christmas music is playing all of the time! It is kind of exciting!

The fact that Gracie was suppose to get blood work done on Monday morning and we all forgot, is indicative of how "normal" things have been. Gracie has been feeling great and back to her normal 3 year old self. Her sisters are treating her just like any other sisters would, so often trauma ensues in our home. Today I took Gracie to get her blood work done this morning. She took her piggy ball (the one she was given on the day of her first transfusion) to entertain herself. She ended up entertaining everyone in the waiting room for the 15 minutes we were there. She would back up as far as she could from my chair and throw the ball all the way across the room to me and want me to throw it back. Occasionally she would be off the mark and have to crawl under someone's chair to find the ball. She was very happy to be there until they called her back. Then she cried and said, "I don't like a little poke," over and over again. Our good friend and lab technician, Kerry, was there. She is really good to Gracie and got it done really quickly. We have not got the results but I guess we have stopped expecting them the same day now.

We are grateful for the wonderful care that Gracie continues to receive and for the many blessings that we have been given. I am reminded everyday about how much Gracie is loved and how fortunate we are to be here to receive the best care that we could ask for!

A Rather Off Topic Post On Health Care Misconceptions (or Adam Smith is Stupid)

Yes, you can all gasp now. But before I go on to further explain let me say that Gracie is doing really well. Her eye hemorrhaged again, so it's all red, but other than that she seems to be doing well. We've noticed no adverse reactions from the platelets transfusion and she continues to bounce and run and scream and basically be far too energetic. My how that anemia hits her hard.

 Now onto the title of my post. Being Canadians living in the USA during this past election there are a few of phrases we hear quite often, some of them include "Aren't you glad you are down here and can get good health care?",  "Is Canadian health care as horrible as they say it is?" and "I'm told you get what you pay for". 

First off I must say that the majority of Canadians LOVE our health care system (67% in 2006). It has been something I've felt passionately about for several years now, since I was taking a political science class on health care in university. Second I must add that I can't really get into highly intelligent debate as I'm  not exactly a scholar on the economics of health care, nor is this the place to do it if I was. This is a blog about Gracie and retinoblastoma. This is not a political forum nor will it ever be. I'm just frustrated with all the misconceptions I've heard about Canadian health care and if I hear it once more I think I'll scream. As such I'm going to vent for a little bit, but only for this one post. Then it will be back to the good old We Love Gracie.  Most of my opinions come from first hand experience of both the Canadian and US systems. Really I think I'm quite intimate with both of them now. I lived for 28 years in Canada  and was a health care provider either as a PCA, student nurse or registered nurse for 6 years. My mother has been a registered nurse working in Canada for 35 years and in the USA for 8 or 9 years now. My sister is an RN specializing in emergency care and has worked in the USA and Canada as well for about 10 years total. We've discussed and compared the health care delivery between the two nations at great length. My experience with the US system is solely as a recipient. I've never worked down here. But in the year and a half we've been here my son has gone through extensive physical therapy since he was 4 months old. He has gone through testing to determine if he had a progressive neuromuscular disease (which he doesn't) and he continues to be tested for metabolic disorders to determine why he has global hypotonia.  Gracie as you well know has been receiving cancer treatment for the past 3 and a half months.  The most common misconceptions that I hear are about long wait times and quality of care.

Quality of Care

The Canadian and US health care systems both provide excellent care with highly educated physicians, nurses and other providers. I've had to put aside one of my own misconceptions when I moved down here. I know a number of people (I can think of at least 5 off the top of my head) who were not able to get into medical school or dental school in Canada so went to the USA to get in.  It's just easier to get into med/dental school down here. As a result I was honestly worried about the education of my doctors when I came down here. When I voiced that concern to my sister she told me that I was silly and almost all of the doctors she'd worked with were very good. I must agree I really like most of the doctors we've had down here. Perhaps Canada should learn something from this. Perhaps by requiring such a high GPA for students to get into medical school we're turning away a lot of candidates that could be excellent doctors. The staff I've dealt with down here have been really really good for the most part. But the staff I've worked with in Canada have been really really good too. The technology we have in Canada is also really high. We are far from a developing nation.  In fact when they do the genetic testing for retinoblastoma they send it from here to Canada as the lab in Canada has the most sensitive testing and they don't give up if they can't find a mutation. In such a case they keep the sample to test later with future methods so that they can determine the mutation. 

Wait Times

I'll have to admit there are longer wait times for some things in Canada. I'm too lazy to actually research and compare what they are. However we triage in Canada. So often if it's an elective procedure you're going to wait, but that's mostly because you're being bumped by life threatening procedures. A few years ago my brother did sit and wait in the ER with appendicitis, but that's because the OR's were stuffed full of people from multiple traumas that night. His condition was potentially life threatening, but theirs were imminently life threatening. (This isn't an every day occurance, it was just a bad night to have appendicitis). Being a family member of someone who had to wait I must say I'm 100% okay with that, because if it was my brother in the trauma I'd be really grateful. My dad has had to wait for knee replacements, but you don't have to wait to start cancer treatments. I've talked with the retinoblastoma people in Canada. We would have been in a week earlier there than we were here. I've talked to another family in the last couple of days that said the exact same thing about another health treatment. They actually went to Canada for the treatments because they'd receive it quicker there than they would have here. For the most part you only wait if you can afford to wait (ie medically stable). Plus if you've got a doctor worth their salt then they can anticipate most elective procedures (ie hip & knee replacements which are the ones with legendary waits) and get you on the waiting list before it's causing too much discomfort. That way when you actually need the replacement it's your time to get it any way. Truthfully we would have had to have waited longer for my sons procedures in Canada than we did here. He has had an electromyography and a muscle biopsy as well as several blood tests for metabolic disorders. That waiting would have been hard because it would have been not knowing, but there wouldn't have been a rush for anything other than emotional reasons to find out what his condition was. In Canada they probably would have done blood tests to determine if he was a candidate for muscular dystrophy or spinal muscular atrophy and the major metabolic disorders (outside the ones screened at birth) and when those came back negative they wouldn't have been worried as much and they would have ended the push for the diagnosis. They would have taken more of a let's wait and see approach. Down here they have pushed harder for the diagnosis which we still haven't received. So either way we would end up in the same boat we're in now, he's progressing forward we don't know what's wrong, let's wait and see how he does (and he's doing really well). Now there may be the odd factual horror story of people not receiving urgent medical care in Canada because of long wait times with disastrous results. This would not be a phenomenon unique to Canada. Since being here I know of at least one case that has made the news of a lady who died in the US while waiting in the ER. There may be more, but I don't actually follow the news too carefully so I really can't say.  In any of these cases I'd say that the individuals providing the care actually need to take some responsibility in these cases. If I tell someone having chest pain to wait in the lobby and they die of an MI while waiting it's not the systems fault, it's their inept triage nurse. I was talking to a mother in the cancer center on Thursday who told me that her 9 month old daughter was vomiting blood and her stools were black for a full week all the while her doctors told her it was just a virus. Finally the mother insisted that blood work be done and it was determined that this little girl was in renal failure due to acute myeloid leukemia. She ended up being airlifted to Austin where she was admitted to the PICU and proceeded to have a 7 month inpatient stay. An unacceptable wait for emergent care right here in the USA. But it's not the health care systems fault, it's a "What on earth was this doctor thinking" problem.  Triage people, TRIAGE! It may be inconvenient to wait for relatively minor things, but if it's you who's life is on the line you'd be awfully glad that's the way it works. 

Insurance Companies

Really I'm thoroughly annoyed with insurance companies. We've had to fight with them to cover the surgery to put in Gracie's port as the only pediatric surgeons in Austin were not covered by them. They've tried to say Gracie's zofran (nausea medicine) is not medically necessary. Now they've got issues with covering genetic testing to determine if any of our other children have the retinoblastoma mutation. Why is it them deciding what Gracie needs and not her doctors. I hate having to worry about insurance.  Insurance companies are far too powerful. And while I'm talking about this I might as well add how frustrating it is that hospitals and doctors overbill for services. I really don't think that the hospital should be able to charge $15 000 for a 1 hour procedure. And this doesn't include the doctors, drugs, or any thing else (trust me their nurses aren't getting paid enough to justify these costs either). That is simply the hospital fee. Yes, our insurance paid most of this fee but it simply shouldn't have been that high to begin with. There is no way it costs that much. By making health care a capitalist business hospitals, doctors, insurance companies and everyone else involved are all trying to make as big a profit as possible and it's insane. As a friend said, they're like the Roman fire fighters that would negotiate the price of putting out a fire right there while a house was burning down. You kind of have to pay what they tell you to pay. If you need it, you need it. And then you have to worry about price in the aftermath. I thought the idea was that the consumer was supposed to drive the market. Well I'm sorry, the consumer isn't driving anything. They're utterly powerless. I think it's sad that when  people find out Gracie has cancer one of the common responses we hear is "Oh, I hope you have insurance". What if we were self employed and couldn't afford insurance? We'd have debt that we wouldn't be able to climb out of in our life time. These are peoples lives we are talking about, not just another great way to make a profit. It can ruin lives. People are worried in socialized medicine that it would be abused. I'd far rather have several people abuse it than have even one person who needs it not be able to receive it. Plus if you don't think the US health care system is abused, talk to an ER doctor or nurse, they see it all the time. 

Universality

One of the key principles of the Canadian Health Act is that it is universal.  Canadians are entitled to health care no matter where you are and how much money you make. And you don't get lesser care because you can't afford it. Some people complain about how much money they have to pay in taxes to provide for universal health care. We've learned that we pay FAR MORE money in insurance premiums down here than we ever paid in taxes in Canada. And then when you go to the doctor down here you still have deductibles and copays to pay on top of insurance premiums. An unexpected illness in Canada will not leave you penniless, whereas it's the leading cause of bankruptcy down here. As for the theory that you can shop around and have more choice in health care in the American system. I find that down right laughable. Your "choices" are limited to whoever is in network with your insurance company. Your "choice" in insurance company in edicted by whoever your employer has contracted insurance with. Of course you may be self employed. If that's the case good luck in actually being able to afford the insurance premiums for any descent coverage without an employer paying part of it. 

Portability

Anywhere you go in Canada you have health care coverage. You don't have to check to see if the hospital you go to is in network with your insurance. You don't have to worry that your in network hospital has shipped your blood they drew to an out of network lab and that you'll be slapped with the whole bill as a result. It's ALL covered EVERYWHERE.

Fear Mongering

 While in my political science class I watched news coverage from back when they were moving the Canadian health care system into a more socialized system. It was highly comical decades later to see the irrational fears people had about what would happen if we moved to socialized health care. The government would know all about your health. PLEASE! Do people really think the government cares that you had a vasectomy last year, or what your cholesterol level is. I think they've got more important things to do with their time. They were prophesying the decline of the quality of care that would come as a result. Their fears were irrational, but they would simply stir each other into a frenzy about the horrors that would ensue if we moved to a socialized system. And look here we are 40 years later and like I said mostly we Canadians are really pleased with the result of what was so vehemently opposed initially. I find those news clips even more humorous now as I'm watching the exact same fear mongering occur now. When I was talking to our case manager from insurance she mentioned that we shouldn't ever move back to Canada as they just don't have the ability to care for us there. She mentioned that they only had 10 MRI's in the whole country. I was completely shocked that an intelligent being really believed this. This is simply not true and I told her so. Most of the horror stories that you'll hear about Canadian health care are just that, stories. Where they come from, I'm not exactly sure. Our case manager claims they came from a Canadian doctor she knew. Well, I'd take with a grain of salt any story that comes from disgruntled Canadian doctors (or any other person), they may not be entirely unbiased or accurate. Even in the non embellished  stories one bad experience does not reflect of the quality of the entire system. 

I found that this quote (which I got from wikipedia) sums up my opinion nicely. In a letter to the Wall Street Journal, Robert S. Bell, M.D., President and CEO of University Health Network, Toronto, said that Michael Moore's film Sicko "exaggerated the performance of the Canadian health system — there is no doubt that too many patients still stay in our emergency departments waiting for admission to scarce hospital beds." However, "Canadians spend about 55% of what Americans spend on health care and have longer life expectancy, and lower infant mortality rates. Many Americans have access to quality health care. All Canadians have access to similar care at a considerably lower cost."

So what do I say when people ask me if Canadian health care is really as horrible as they say. I simply say that I LOVE IT! Is it perfect, absolutely not it still has a long way to go and I hope we keep trying to improve it to make it as good as we can. But it's pretty darn good, and Tommy Douglas is one of my heros. In regards to the recent election I might not agree with everything Mr. Obama had proposed, truthfully I didn't pay much attention as I can't vote here any way. But I did pay some heed to health care, and in my opinion the only one who proposed a better health care plan than Obama did was Hilary Clinton. So there you have it. You don't have to agree with me. The vast majority of you will strongly disagree with me I'm sure. And like I said I have no intentions of debating it, because I've never claimed to be an expert on these matters. It won't be mentioned again, definitely not on this blog. But these are my opinions and now you'll know the next time I get asked about the Canadian health care system and I roll my eyes what I'm really thinking. And this concludes my venting. 

p.s. The bit about Adam Smith is just because James laughs every time I say that. Really I haven't read the Wealth of Nations or any of his other works so I'm not sure what I think about him. I only have a high school education on that subject. James points out that although I say I'm in favour of socialized health care this may not be entirely accurate. I definitely am in favour of universal health care, but I'm not entirely sure I'm using the correct terminology to describe my beliefs, or for that matter what exactly my beliefs are. One of my goal for 2009 is to embark on a study of economics so that I can become more knowledgeable on the subject. Maybe then I can discuss it and feel somewhat intelligent while doing so. 

2nd Transfusion

We scheduled an appointment for 0845 on Thursday at the cancer clinic. Really by the time we'd dropped our other kids off at friends homes and took our oldest daughter to school we didn't get there until 0900. But no one seemed too put out by it. Before they accessed Gracie's port they did a finger poke CBC, just in case she wasn't too low.

Hgb - 8.2

ANC - 830

Platelets - 6

 On Thursday (day 14) last round her platelets were 14 and it wasn't until day 15 (which would be today) that they dropped to 3 and she finally got her transfusion. So if on day 14 they were already at 6 this round and they were still dropping, they would have been nonexistent today. Not that there is really a difference between 3 and 0, or 6 even for that matter. Either way you simply won't clot. Needless to say she got her transfusion of platelets. It was an all day waiting thing, but we knew that going in to it. They actually had the platelets earlier, but because it was in too much volume they had to separate the plasma from the platelets. This takes a couple of hours. By the time they got to them there was hardly any volume at all to transfuse. They were just super concentrated. She did well with the transfusion. We briefly considered a red cell transfusion also as her hgb is kind of borderline, but as her energy level is so high we decided against it. She is pale though, but that's a constant thing now. Her ANC is going up again, so that's a good thing. We also drew blood for genetic karotyping to determine if she has chromosome 13 deletion. We think it's probably an under diagnosed condition so it was something worth looking into. 

I was able to talk to Dr. L. about Gracie not losing her hair. She's supposed to have lost it already and hasn't. Dr. L has been an oncologist for a long time and she's never seen a child keep hair like this. Sometimes they keep some of it, but there is always a severe thinning at the least.  My concern is that if the hair is resistant to the chemo, why wouldn't the cancer be too. I'd feel better if ALL of her fast dividing cells would show that the chemo is working, not just her blood. Dr. L didn't really have any good answers because this just doesn't happen. Etoposide simply makes you lose your hair, and Gracie still has a full head of it. It's a little thinner, but not much. Every time I brush her hair I hope it's just going to clump out, but it never does. It's a little unnerving. Sorry to all of you who have given us hats, we'd really like to have need of them. Maybe today will be the day. But they're really cute hats, even with hair. 

Claudia is the child life specialist at the cancer clinic and she's just amazing. Gracie is absolutely thrilled to see her whenever we go there. She loves the doll Sammie that she gets to do medical play with. Sammie has a port that Gracie can access and give medicine too. She has so much fun with it. Claudia also gave Grace her courage beads yesterday which were a HUGE hit. She gets a bead for every thing they do to her and different beads represent different procedures. A red bead is a blood transfusion. A white bead is for a day of chemo. A black bead with silver stripes is for a poke (she's got lots of those). A lime green one represents her fever. A yellow bead is for each day in the hospital. I could go on but you get the general idea. It's a wonderful idea that several cancer centers do. It's kind of like giving medals to soldiers. I guess that's why they're called courage beads. These kids do have courage and the beads represent all the tough stuff they had to do and I'm glad she has something to honour those accomplishments. She's very proud of her necklace. Not that she really gets what they're for, but she will someday and I'm sure she'll always treasure them. I do already. 

Stephanie

More Pictures

This picture was taken one day after her chemotherapy. She is pretty happy and back to her normal 3 year old self.
Isn't she just so cute!
These final four pictures are from today (Nov 19, 2008). Gracie is my little darling!
Gracie is just being herself and smiling big for the camera here in the PJs sent from a friend in Canada!
This picture kind of shows the red that is coming back into her eye. With her platelets so low the swelling and bruising increase (this happened last time at the 10-14 day window after the chemotherapy as well).
This is our happy little girl!

Hospital pictures

Gracie is playing with the balloon that some anonymous individual dropped off at her hospital door for her. She loved the balloon. Especially here where she is about to be discharged.
This is a few hours before discharge. Gracie is coloring a picture and smiling big for the camera.
Gracie finally started enjoying food on Saturday. She does not look really happy here but soon after she was wanting to run around and play. You can see her Miss Piggy (Mr. Pig- as she calls it) behind her. She received it as a gift from Make-A-Wish foundation and everyone seems to think it is the best doll ever. Apparently Miss Piggy is a real hit!
I put this picture in because you can see how swollen her right eye is. This is about 36 hours after the carboplatin injection.
She was very tired for the first 48 hours after surgery. This is on Friday (the 7th of November) and she is just resting. We liked this a lot better than the October round because it indicates she is not in the same amount of pain.

Today's Counts

Note how I'm posting YESTERDAYS counts TODAY!! Imagine how impressed I am.

Hgb - 8.7

Platelets - 36

ANC - 586

Houston told me to go ahead and see about scheduling a transfusion for Wednesday or Thursday as we know her counts are still going to be dropping for a few days. They think she'll probably need blood and platelets this time as her hemoglobin is already getting low. She's also considered moderately neutropenic so it's time to be extra cautious about where she goes as her immune system is down.