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.

Chemo Aftermath and The World's Best Sister

Gracie just hasn't been doing as well after this round of chemo. It's not that she's doing horribly, I'd still say she's doing quite well with all things considered. It's just that she's acting more like you'd expect someone to after such an ordeal. She's done so well in the weeks following chemo in the past (once the pain of the injection was gone after round 2) that we just figured it would be all smooth sailing. She continues to do well, but we definitely have a grumpier version of the cheerful little girl we know. One time she was acting particularly grumpy, but denied any pain or nausea. I decided to give her some zofran (for nausea) any way - just in case. Wouldn't you know it a half an hour later our chipper little Gracie returned to us. After that experience we decided to give her some zofran more regularly. It seems she just doesn't know how to express what she's feeling and as such she just acts grouchy. 

This week my sister gave me a wonderful idea. Throughout the past months some days have been better for me than others. There have been a couple of nights when it was very late and I just kind of break down. It doesn't happen too often, but it has on occasion. Usually James and I can talk and he gives me a lot of strength. However, there has been a time or two when it's happened and James either hasn't been home or he's already asleep. Thank heavens I have the best sister in the whole world (and a rather understanding brother in law). On those nights, when it's very late (even in Idaho where she lives) I can call her up and we can just cry together. I only have the one sister. We always shared a room. Even in university we were roommates and shared a room. It made for A LOT of fights, but I can't imagine feeling closer to a sister than I do to her. We are so much a like, we think on the same lines. As such sometimes she's just the absolutely best person to talk to.  A couple of nights ago my sister and I had one of these late night conversations. The conversation we had is going to sound very negative, and you'll have to forgive me for that. I choose to be optimistic about our future and know that I am one of the most blessed people to ever walk the face of this earth (I've got James!!!!...and 4 beautiful children!!!!!), but every now and then I fall into despair - especially when I'm tired. I was lamenting about all the uncertainties ahead of us, all the difficulties that cancer has brought into our life. I was lamenting about the decreasing odds of being able to save her eye. I was wondering if we need to enucleate that eye if she'll understand how hard that decision was for us? Will she know we only did what was best for her? How many prayers were uttered and tears were shed during those days?  I was lamenting that cancer will always be a part of our life now. The only thing that will take it away from us is if they can find a 100% cure for every type of cancer that exists. Gracie is the point mutation for a genetic cancer. So she didn't inherit it from anyone (we think), but the mutation is in every cell of her body and she can pass it on. Also she has a 51% chance of developing future cancers herself. So even if we were to remove the cancer from both of her eyes and it was to never come back there she has a high risk for developing bone cancer, skin cancer, and really any of the sarcomas as well as an increased risk for any other type of cancer. I watch her run around and have so much fun and it's hard to think that she will never escape cancer. Each of her children has a 50% chance of carrying this same mutation. She'll have to have cancer testing done on each of her babies, immediately after birth if not in utero. She'll most likely have to go through this same ordeal with her children. I will with my grandchildren. So much health that I have just taken for granted in the past will no longer be able to be taken for granted. Our lives will always include oncologists. 

As I was crying to my sister she helped me remember some things. There is still a 49% chance that Gracie will never have cancer again. Six months ago I wouldn't have been impressed with these stats, but it's a whole lot better than a lot of kids have so we'll readily embrace that. Also Gracie will be able to help her children better than we are because she's gone through it. She'll truly know what it is like. She'll be able to provide strength for her children that we're not able to because we lack that experience. Now we're coming to my sisters wonderful idea. She suggested that we print off the blog so that Gracie would have a record of our experiences. Because although she might understand what it's like to be a child with cancer, we understand what it's like to be parents of a child with cancer. James and I will be there to offer our support and our records can help her too. She will know exactly how much thought, prayers and even tears went into every decision we made on her behalf.  Hopefully she'll beat the odds and never have to deal with her children having cancer, but if not we'll be prepared. So I spent some time moving the blog into a word document that eventually when things have settled down we can have printed and made into a book. 

So we have some more challenges in our life than we did before. I could think of so much worse than this (I have a rather vivid imagination). Reading through our blog and all the comments on it reminded me of how many people love us and pray for us. We have more than most people could even imagine. We are so grateful for this. We are so very, very blessed. Gracie is very blessed. And hopefully her sisters will be as good to her as mine is to me. Thank you Kir.

Stephanie

Today's Counts

Hg - 9.6

ANC - 960

Platelets - 106

Her counts are on the way down. They are expected to nadir (reach their lowest point) 10 - 14 days after chemo. If she's going to need a transfusion it will be next Thursday or Friday. So Tuesday or Wednesday is when we're planning to go donate platelets to make sure the blood bank has them.

The Monday after round 3

After the hospital located the drugs needed to send us home on Saturday (which took a couple of hours), we headed home. Gracie slept much of the way and has been tired much of the time since then. However, she is doing quite well and goes through periods where she is her normal bouncy self. The swelling in her eye is minimal (particularly compared to last time). She does not like the drops that she needs but tolerates them. We are continually grateful for the love and support that has been shown by friends, family and neighbors. It is nice to know that people care so much for Gracie and our family.
Gracie had an appointment today to undergo some badly needed dental procedures (she has had dental problems for a while and the chemotherapy is not helping with that either). I just got a phone call from Stephanie explaining that Gracie did not allow the dentist to stick anything near her mouth. She refused to let the dentist work even while her mom was right beside her. So they need to schedule an OR visit to do the procedure under anesthesia. She had already received a bunch of medication this morning to treat for potential bacterial infections during the dental work and she had received the pain killers for the procedure so I think she will be out for the morning at least. It is sad that everything could not get done today and that Gracie has to go the hospital again near her next chemotherapy appointment (it has to be when her blood counts are high).
We continue to hope and pray that Gracie will keep both her eyes throughout all of this. She is such a strong little girl and we love her dearly!

Day 3- Round 3

Last night went extremely well. Stephanie was up with Gracie twice after her chemo was completed at about 10PM. Gracie seemed to sleep well and has not had any pain killing medication since yesterday morning. Gracie and I spent a large chunk of yesterday afternoon painting and playing in the games room. She was happy to be up and literally bounced back to her room at 6PM to start receiving fluids to prepare for chemotherapy at 8PM.
The only major hiccup today was that the needle into her port-a-cath got clogged and so they had to reinsert her port. This is the first time that we have let them access the port prior to the EUA procedure. Gracie hates it when it needs to be accessed so we thought that it would be better when she was asleep already, however, in the past, the nurses in the operating room did not seem terribly confident working with the port so we had just waited until the cancer unit to access the port. It is probably just a coincidence that the port got clogged the first time that an OR nurse accessed it but it was still frustrating to see that it had to be reaccessed.
It is just after 10:30AM and the doctor just came in to do the final assessment before we can be discharged, so hopefully we will be on our way shortly. Gracie is really excited about everything right now and convinced the volunteers to give her all of their orange markers. She told them it was her favorite color. They only had two packages with orange in them. When they asked which set she wanted she told them both. Now she is coloring and telling the doctor about Disneyworld.
It is great to see her so happy!
Thanks again for your love and support!

Day 2- Round 3

Gracie's night was OK. She slept most of the night. The chemotherapy was completed at about 10:30PM last night and so we all were able to lay down at a reasonable hour. I was up with her every couple of hours for her to use the bathroom and sometimes I woke up when a nurse came in to check her vital signs but it was not as bad as it could have been. Gracie has not experienced the severe pain that she did last time so we are really pleased. The swelling in her eye is making it difficult for her to open her eye by herself but the swelling is far less then last round!
Yesterday, in talking to Dr. P (our pediatric ophthalmologist) we found out that Gracie is her first patient on this treatment regime so she is learning about how a patient reacts to the subtenon injections along with us. Dr. P is really good at explaining why they are doing things but I also wanted to speak to our pediatric oncologist, Dr. M, because he is involved on a national team of doctors working on new treatments in retinoblastoma. Dr. M did come and speak with us this morning. It was nice to get his perspective. He basically said the same things as Dr. P had said but emphasized that it was a very good sign that the tumors in the right eye were not growing. He reiterated that the it was difficult to assess at this point if the visceral seeds were going to be effectively destroyed by the treatment but they had seen some calcification on the seeds and that was a good sign (there is just not as much calcification as we had hoped).
Dr. M also explained a little further about how the tumors on the retina of the right eye appeared to be more mature. It is difficult to tell at this point, but they may have stopped growing long ago. If it is true they are benign (not growing anymore), that would explain why the treatment has not caused them to shrink either. Dr. M emphasized that because Gracie has such good vision in both eyes, they are trying to do all they can to preserve the eye. However, if the tumors (particularily the visceral seeds) cannot be controlled and the right eye is removed, then Gracie will still have very good vision from her left eye. The possibility exists that, if the visceral seeds are successfully treated and the tumors on the retina are thought to be completely benign, then Gracie could continue without removing the tumors and be constantly monitored to make sure that the tumors do not start growing again. This course of action carries some risk as one of the tumors is still right adjacent to the optic nerve. If the tumor were to grow onto the nerve then the cancer would have access to Gracie's entire body and be very difficult to treat. Dr. M assured us that there is no risk while she is undergoing chemotherapy and that there are too many unknowns at this point to make any decisions about future treatment, however he was kind enough to answer our questions and explain several potential options.
We continue to receive wonderful care from the healthcare workers and appreciate their efforts. As always we hope and pray for Gracie's full recovery from this round of treatments and that she may keep both of her eyes. Thank you all for your support and concern especially while Gracie is in Houston these few days.

Day 1 Round 3

Gracie waiting for her chemotherapy drugs tonight.

Gracie waiting for her procedure with her dad.

Gracie in the hotel last night after she had been playing around during supper and in the hotel room.

Last night was perhaps one of the longest nights of my life. I was so worried that I could hardly sleep. At 0130 I finally gave up and pulled out my scriptures and started reading. At 0330 I tried to sleep again. This time I dozed off and on until 0530. Then we woke up and got ready. We arrived at Texas Children's at 7am. Gracie was taken into the OR at 0940. She was in for over an hour. At that time we were called into the consult time to talk with Dr. P. Her left eye has improved significantly. So much so that the one tumor is almost nonexistant and the other is about half gone. Unfortunately there is very little change in her right eye. (The right eye is the one that is class D) The vitreous seeding may have calcified a little, but that's about all that's changed. The tumor right next to the optic nerve has not shrunk at all, neither have any of the other large ones that are attached to the retina. This was a very hard thing to hear as the possibility of saving the eye has significantly decreased because of the lack of progress seen. Remember we were only given a 50% chance to begin with. I asked if we should continue with the treatments, or if the prognosis was pretty much set in stone now so there was no point. Dr. P. strongly suggests that we stay the course and complete all 3 carboplatin injections. Although she was very straightforward with us about the decreased chances of saving that eye, which we appreciated. At least this way there won't be any what-ifs.

The good news is that the swelling and pain is significantly better than last time. She's only had to have two doses of morphine and the swelling is probably only a quarter of what it was before. Gracie has been sleeping most of the day since coming out of anesthesia. She's not really interested in eating or drinking, but she wasn't last round either. She's kind of finicky with what parent she wants with her when she's awake. Sometimes she wakes up and asks for James, and then other times it has to be me. One time she woke up and James was laying beside her. She said "Daddy, you're making me sad" When James asked why she said "Because I want mommy to sleep with me". She's done the same type of thing with the opposite request for daddy. It's nice to have things be so much more comfortable for her. We got a bed on the cancer unit just after 4:30 pm and we are all much more comfortable. Prior to that we were in a recovery room. There Gracie had a bed but the rest of us had hard chairs and we were all together in a large room with other recovery patients.

OK- prior to this Stephanie was writing and now we have switched off so this is James.

Gracie is just about to receive the chemotherapy drugs. It is 8PM and she is still sleeping. She has only woke up for brief moments since her procedure this morning. I think that the morphine has helped with the pain as well as kept her asleep. We are very happy with how well Gracie is doing following the injections this round. We hope and pray that the injections will be effective is shrinking the tumors on the retina as well as the visceral seeds. However, we know that Gracie will be fine, even if her right eye must be removed.

Thank you all for your prayers and concern. We continue to be amazed by the strength that our family and friends have provided us.

Getting Ready for Round 3

I have never been this worried to go start a round of chemo. For round 1 I was just anxious to get things started and kill those tumors. Round 1 went so well that I didn't really worry about round 2. But round 2 was such a horrible experience that I get literally ill when I think about having to repeat that again. It is so difficult to watch your child hurt that badly. Also her eye looked awful. I had no idea that an eye could swell that badly.  All in all it was a highly traumatic experience. So I'm dreading round 3.  James' mom flies in Tuesday to man the fort. We leave for Houston Wednesday afternoon (hopefully Grace will have enough time to swim at the hotel before going to bed).  Thursday morning Gracie is scheduled for her EUA and second subtenon injection of carboplatin (only one more after this).  That evening she can start infusions (if we get a bed). For those of you looking for specific things to pray for here is my current list.

1. That these treatments will be effective and Gracie will be able to keep BOTH eyes (always at the top of my list)

2. That she won't have to suffer the same pain and swelling she did during round 2

3. That if she does have to have that pain and swelling again that it won't all be in vain and that it means that the treatments are working

4. That we can get a bed on the cancer unit early on Thursday so that it'll be easier to manage Gracie for pain and swelling after the injection

5. That her mommy can be tough and not lose it through all of this

Although I'm dreading this, I'm also looking forward to getting it over with. After round 3 we'll be half way done treatments. After round 3 there is only one more subtenon injection left. There are a lot of things that we'll be celebrating after round 3.