Sometimes I feel like its all a dream. Like I'll wake up and it will have just been a horrible nightmare that I won't have to remember for more than a day. I keep wishing that real life was like a Lifetime movie, where you are shown the consequences of a choice and then go back and can make a change. I feel like if we had known just a sliver of what we know now about her disease just a month earlier than we did, we could have changed something.
I know I shouldn't get stuck in the what ifs, but its so hard. If she had never been clear, if we had never heard NED, I think it wouldn't be as heart wrenching. I feel like we missed our chance; like we had our open door and we let it shut in front of us. This is the feeling that haunts me. This is what made the holidays so hard.
I can't let this happen to another family. I have to start getting this information together to help other families. We need to get parent advocates in every hospital for every disease - someone who has been there and can help sort through the information right at the beginning. Someone who can help by sharing the information that is out there and point that family in a direction that is right for them and their child. Doctors need to be more forthcoming in the information that they share with patients, and not pussyfoot around issues that are "hard" to talk about. They also need to be willing to work with other doctors and hospitals to design care plans that are more individualized for their patients, and less "cookie cutter." Some diseases, like Hodgkin's, have a tendency to do the same thing most of the time, but Neuroblastoma is not one of those diseases. If we don't share individual experiences with others, there is no way that each doctor will see the many mutations and courses that this disease can take. Rather than competing for patients, consortiums and oncology groups need to work with each other to tailor treatments for the patients they see, using all the resources available, not just the ones at their hospital.
Here is my example. Recently, I spoke to a woman from Connecticut who also lost her little girl to this horrible disease at the beginning of December. I was glad to talk to her, as I felt like I needed to share my feelings with someone going through the same things. Sadly, her story is almost identical to Saoirse's, and towards the end, they experienced very similar, inaccurate "symptom management" from their doctors. While Saoirse's doctors were telling us that her disease was not looking like anything they had seen Neuroblastoma do before, there was a little girl in CT who had just lost her battle in the exact same course of events just weeks before. Now, you may say that there is no way that this could have been put out to the world of doctors in time to save Saoirse, or to even help in her treatment in any way, but I challenge the fact in the advent of social media and the internet. If particularly difficult and abnormal cases were presented on something like a Facebook group for NB doctors, there could have been a connection made as soon as a post was read.
There might be a benefit to the fact that only 600 - 700 kids a year are diagnosed with this disease - social networking would not take all the time of a doctor or advocate to sift through the individual situations. And if parents gave the early symptoms that they experienced with their child, pediatricians could more easily find and learn what to look for in their patients and do the early testing (yes, there is a URINE test for NB!) that might help to diagnose these kids earlier and give them a much better chance at survival.
With all the advancements in cancer treatment over the last 40 years, it is sad that more and more kids seem to be diagnosed each year. We should find out more about these kids and how they are developing these diseases, and work to find the answer to why they get a disease and other kids don't. I'm not happy with the "we don't know the cause" answer so readily given out by doctors. There has to be something, and with all the technology out there today, I think we should be able to figure out what in our environment is making these kids develop this evil inside of them. I, for one, am going to be throwing away our cleaning chemicals, and starting to eat organic and less processed.
That's my rant for the day. I suppose I have found a direction for some of my frustrations, and now i'll have a place to direct my efforts.
Tuesday, December 27, 2011
Wednesday, December 21, 2011
Ashes, Ashes, We All Fall Down
The past week has been rough. After 18 months of 24/7 baby care, to wake up on my own, without having to get up when the baby wanted, is a strange feeling. I spent so long wanting and waiting to be a mom. I felt like it was my calling, my destiny, my dream job! Even with all the though days and the stresses, the sleepless nights and the tears, I knew it was what I was supposed to do. All I had to do was look into her eyes, and I knew that I was doing a good job. Now I just feel lost. I lost my job, my purpose, my motivation. I feel like I failed - not as a mom, but as an "employee." My job was to care for and protect her; give her all that she needed, and help her be a good person. But I couldn't keep up with the evil that was inside her.
I feel like there were so many mistakes made since the end of her induction chemo. When we started informing ourselves of our other options, we were so overwhelmed. It was hard to focus in on the next thing to do. We thought we were ok, that we would be able to take a deep breath and have time to make an educated decision. If we had only known then what we know after doing so much research. I think this is the most upsetting. If we had started informing ourselves just a little earlier, started researching the options and the treatments available just one cycle before, we may have been able to make a decision that could have changed her course of treatment completely. I feel so responsible for not pushing harder and faster and staying up nights reading at the beginning. I know that there is no way of knowing if it would have made any difference, and that her disease was so aggressive that it may have changed nothing, but I can't get past that felling.
We are told to trust doctors, that they know what they are doing. We are told that there is a standard treatment, and that's what you do. Everything is immediate, and nothing is optional. I have found that this is not true in the world of cancer. There are "standard treatments," but they are not the only option. I wish that we had been told that there were other places out there that did other things to treat this disease. Especially at the very beginning a little direction would have been so appreciated. If we had known to look farther than our own backyard then, we may have chosen different treatment, or we may not have; it may have changed everything, or nothing; but at least we would have felt like we had made a more informed decision.
I am a true believer that everything happens for a reason. I know that someday, we will look back and say "that's why she went through what she did, to get us here." Nothing happens by chance; decisions that are made have a course. And, although I feel that I have a lot of luck in my life, I know that, in time, everything leads up to something bigger.
But right now I'm feeling purposeless. I don't have a baby to feed or diapers to change; no doctors appointments or treatments to schedule. I don't have to plan around nap and bed times; I don't have to pack up a diaper bag and food to leave the house. I can pick up a purse and keys and go out at 9pm, leaving only the dog at home. Its a strange feeling. It feels as if I've gone back in time to before Saoirse came into the world, before I was pregnant, but I have the knowledge of the past 18 months haunting me. I had my dream, my baby girl; so strong, so independent, so happy, and it was all taken away too soon. Now its waiting. Waiting for answers, waiting for the next project, waiting for that aha moment when everything lines up again. I hate waiting. I feel myself longing to see friends with babies so I can play with them. Watching the kids at the mall is joy and torture all at the same time. I saw some women arguing in the parking lot over how one of them parked their car (it was crazy, I'm surprised there weren't punches being thrown) and all I wanted to do was walk over and tell them to appreciate that they still had their children and grandchildren with them this Christmas. There is such a hole in my heart.
And so many other moms are having their next kid. Granted popping out another one is not the answer to our problems, but it would have been nice to have the option. Because of the treatments that I've been through, I have to wait at least two years from diagnosis to think about getting pregnant. It's more of a precaution than anything else. If I were to relapse while pregnant, it would be enormously tough to decide what to do. There is always the risk, especially since I had pregnancy onset Hodgkin's, but after the two year mark, my oncologist says it will be less of a risk. Back to waiting.
Time to reboot. To give ourselves a break from the "real" world, and focus on us for a change. Then we will take on the world. Show everyone that Saoirse meant something, and that she will change the way the world sees childhood cancer. Maybe I'll become a parent advocate and help other parents sort through the wash of information at the time of diagnosis. Hmmmm.....that might be a good place to start.
I feel like there were so many mistakes made since the end of her induction chemo. When we started informing ourselves of our other options, we were so overwhelmed. It was hard to focus in on the next thing to do. We thought we were ok, that we would be able to take a deep breath and have time to make an educated decision. If we had only known then what we know after doing so much research. I think this is the most upsetting. If we had started informing ourselves just a little earlier, started researching the options and the treatments available just one cycle before, we may have been able to make a decision that could have changed her course of treatment completely. I feel so responsible for not pushing harder and faster and staying up nights reading at the beginning. I know that there is no way of knowing if it would have made any difference, and that her disease was so aggressive that it may have changed nothing, but I can't get past that felling.
We are told to trust doctors, that they know what they are doing. We are told that there is a standard treatment, and that's what you do. Everything is immediate, and nothing is optional. I have found that this is not true in the world of cancer. There are "standard treatments," but they are not the only option. I wish that we had been told that there were other places out there that did other things to treat this disease. Especially at the very beginning a little direction would have been so appreciated. If we had known to look farther than our own backyard then, we may have chosen different treatment, or we may not have; it may have changed everything, or nothing; but at least we would have felt like we had made a more informed decision.
I am a true believer that everything happens for a reason. I know that someday, we will look back and say "that's why she went through what she did, to get us here." Nothing happens by chance; decisions that are made have a course. And, although I feel that I have a lot of luck in my life, I know that, in time, everything leads up to something bigger.
But right now I'm feeling purposeless. I don't have a baby to feed or diapers to change; no doctors appointments or treatments to schedule. I don't have to plan around nap and bed times; I don't have to pack up a diaper bag and food to leave the house. I can pick up a purse and keys and go out at 9pm, leaving only the dog at home. Its a strange feeling. It feels as if I've gone back in time to before Saoirse came into the world, before I was pregnant, but I have the knowledge of the past 18 months haunting me. I had my dream, my baby girl; so strong, so independent, so happy, and it was all taken away too soon. Now its waiting. Waiting for answers, waiting for the next project, waiting for that aha moment when everything lines up again. I hate waiting. I feel myself longing to see friends with babies so I can play with them. Watching the kids at the mall is joy and torture all at the same time. I saw some women arguing in the parking lot over how one of them parked their car (it was crazy, I'm surprised there weren't punches being thrown) and all I wanted to do was walk over and tell them to appreciate that they still had their children and grandchildren with them this Christmas. There is such a hole in my heart.
And so many other moms are having their next kid. Granted popping out another one is not the answer to our problems, but it would have been nice to have the option. Because of the treatments that I've been through, I have to wait at least two years from diagnosis to think about getting pregnant. It's more of a precaution than anything else. If I were to relapse while pregnant, it would be enormously tough to decide what to do. There is always the risk, especially since I had pregnancy onset Hodgkin's, but after the two year mark, my oncologist says it will be less of a risk. Back to waiting.
Time to reboot. To give ourselves a break from the "real" world, and focus on us for a change. Then we will take on the world. Show everyone that Saoirse meant something, and that she will change the way the world sees childhood cancer. Maybe I'll become a parent advocate and help other parents sort through the wash of information at the time of diagnosis. Hmmmm.....that might be a good place to start.
Saturday, December 17, 2011
Free at last
Saoirse Craig Fitzgerald lost he battle with Neuroblastoma on Monday morning, December 13, 2011. She fought for almost 8, long months, fighting back harder and more vigorously each time she had a setback. In the end, her little body couldn't take the strain, and she was too tired to keep working so hard.
For now, I will hold back, as I don't feel ready to discuss her final days. But I will say that, as hard as she fought and as much as she wanted to keep going, she knew that she was too tired and she just wanted to sleep.
We are holding a memorial service to celebrate her bright life, and invite you all to join us in celebrating her courage and spirit. Today, Saturday December 17th, we will gather at Cuffe-McGinn funeral home at 157 Maple Street in Lynn, MA at 5 pm. Please celebrate her bright personality by wearing bright colors and miss matched socks. We will be sharing her love of life and her infectious laughter, and remembering her courage.
For more information please visit www.cuffemcginn.com
Thursday, December 8, 2011
I was never a runner...
It's been a long time since I have posted. Some of it is time, but some of it is that I haven't had the heart to write. This has been a time of ups and downs, wins and losses, giggles and tears. We are riding a roller coaster and while the ups are so exciting, the downs can make you sick to your stomach.
Saoirse handled radiation like a champ. She finished it out, and everyone could see the major improvement in her head and eye tumors. She was eating and playing, even though she was sleepy. We finally felt like we were making some headway. She was visibly getting better, and we were glad to start to see our little girl come back to us.
Then we had a turn. She went into clinic and her electrolytes were all off. Her Sodium was low, her potassium was low and she was constipated. We were back in. This was rough because Mikes parents were in town, and I felt horrible that they were going to miss so many days with her. They gave her IV boluses and she started to perk up. She ate, pooped, played, pooped, and ate some more. Her levels went up, and they took her off of her hydration and she was truly Saoirse for six glorious hours! We had our baby back! She was running, and giggling and playing and laughing out loud, and talking and interacting. It was amazing and i was so excited to see her like that. I spent practically the whole time upset at the doctors and nurses and didn't enjoy it as much as I should have. It was short lived.
After her nap, she was miserable again. They checked her labs and her sodium had dropped. They waited it out a bit longer to see if she would rebound, but she stopped eating, stopped playing, stopped pooping, and it was back to lying on the floor and force feeding. With a later lab check, her sodium had dropped, and they put her back on fluid and started to work on a new plan.
Admittedly this was the worst night for me. I was frustrated, upset, angry, sad, defeated... the list could go on. She is so fragile, and I just want her to feel better. I am sick of the hospital stays and the unexpected changes. The unknown is so hard to deal with, and right now, that's all we have. There is no plan, its wait and see. I'm sick of waiting, and "seeing" never seems to pan out to anything good. I felt like I wanted to give up, to stop torturing her with the treatments and the hospital stays, and the poking and prodding. But she didn't deserve that either. I talked to the doctor, and she explained the plan, and I felt much better about how they were going to handle her treatment. She came home with us the next day, on a new plan, and I was hopeful that she would start to perk up in a couple days. We had a few glimpses of her playful side, and she seemed to maybe be turning around. But it didn't last.
She was having constipation issues, and we tried and tried to reduce her bloating. By Monday, she seemed so full of gas, that we thought she might have a true obstruction. We were worried that it would be toxic if she didn't move it quickly. We called and asked to see a gastroenterologist, and we were sent for an ultrasound at the peabody children's location. They saw that her liver was enlarged, and that one of her veins was narrowed and causing her to retain fluid. They said they didn't see any masses, but that it was concerning that her liver was so large. We were called in for a CT the next morning, and lab work in the afternoon.
More hurry up and wait. We were frustrated that we had to initiate the scans and that the doctors hadn't expressed any concern for her large belly on Monday when we were in clinic all day. If its not one thing its another, and we are just tired of all the back and forth and waiting for catastrophic events to happen in order to starting looking at her more closely. The CT showed the enlarged liver, but again no obvious tumors. Still no answers. We went for an additional ultrasound to see if there was any evidence of a clot anywhere that would be restricting the blood flow through her liver. They didn't find one. Still, no answers. Her condition was obviously precarious, and she needed to be watched. We were admitted.
There was a lot going on, and we were feeling the crunch. We were nervous that with the week coming to an end, and a lot of things not available over the weekend, we were going to miss the opportunity to get a leg up on what was going on. There were two possibilities - one is that the neuroblastoma is throughout her liver and that the cells have caused it to become enlarged, and the second is VOD (veno-occlusive disease) which is a side effect of chemo therapy. The only completely conclusive test would be a liver biopsy, but the doctors were not sure that she would be stable enough for one to be done. We had to go to bed that night knowing that we would not know answers right away. This was hard, but we knew that they were working on a plan, and that the plan would be complicated and involve a lot of new and different doctors.
All day today we didn't have many answers. We asked a lot of questions, answered the doctors questions, had a lot of examinations, and started to try and piece things together. They gave her some lasics to try and release some of the fluid from her legs and belly (she is up in weight over 5 lbs), and they gave her some red blood cells because she was quite low. Over the course of the day we met some of the different doctors, and waited to hear if she would be able to have a biopsy or not. They got her MIBG scan scheduled, and managed to get the marker to the hospital (which is a feat with twelve hours notice!), and she was injected for a scan on Friday. We were so glad to be able to have this happen. We really think that it will help to see what is going on sooner and safer than some of the other options. She will also have planning done for radiation so that if it is NB, she will be able to start radiation immediately. We are encouraged by the response in her skull from the last round of radiation, and we are hoping that if it turns out to be NB, it will respond as well to radiation. More waiting, but at least we have a plan.
Right now we feel like we are chasing her disease. We can't seem to get ahead of it, and it is taking turns that the doctors don't even know how to look for. It seems to not want to follow any of the things that are readily available, and it seems like it's got a head up on what we are going to throw at it (maybe its a little bit psychic). We are hoping that soon we can finally get ahead of it, and kick it down once and for all. Right now, we just need to figure out what's going on in her enormous liver.
Saoirse handled radiation like a champ. She finished it out, and everyone could see the major improvement in her head and eye tumors. She was eating and playing, even though she was sleepy. We finally felt like we were making some headway. She was visibly getting better, and we were glad to start to see our little girl come back to us.
Then we had a turn. She went into clinic and her electrolytes were all off. Her Sodium was low, her potassium was low and she was constipated. We were back in. This was rough because Mikes parents were in town, and I felt horrible that they were going to miss so many days with her. They gave her IV boluses and she started to perk up. She ate, pooped, played, pooped, and ate some more. Her levels went up, and they took her off of her hydration and she was truly Saoirse for six glorious hours! We had our baby back! She was running, and giggling and playing and laughing out loud, and talking and interacting. It was amazing and i was so excited to see her like that. I spent practically the whole time upset at the doctors and nurses and didn't enjoy it as much as I should have. It was short lived.
After her nap, she was miserable again. They checked her labs and her sodium had dropped. They waited it out a bit longer to see if she would rebound, but she stopped eating, stopped playing, stopped pooping, and it was back to lying on the floor and force feeding. With a later lab check, her sodium had dropped, and they put her back on fluid and started to work on a new plan.
Admittedly this was the worst night for me. I was frustrated, upset, angry, sad, defeated... the list could go on. She is so fragile, and I just want her to feel better. I am sick of the hospital stays and the unexpected changes. The unknown is so hard to deal with, and right now, that's all we have. There is no plan, its wait and see. I'm sick of waiting, and "seeing" never seems to pan out to anything good. I felt like I wanted to give up, to stop torturing her with the treatments and the hospital stays, and the poking and prodding. But she didn't deserve that either. I talked to the doctor, and she explained the plan, and I felt much better about how they were going to handle her treatment. She came home with us the next day, on a new plan, and I was hopeful that she would start to perk up in a couple days. We had a few glimpses of her playful side, and she seemed to maybe be turning around. But it didn't last.
She was having constipation issues, and we tried and tried to reduce her bloating. By Monday, she seemed so full of gas, that we thought she might have a true obstruction. We were worried that it would be toxic if she didn't move it quickly. We called and asked to see a gastroenterologist, and we were sent for an ultrasound at the peabody children's location. They saw that her liver was enlarged, and that one of her veins was narrowed and causing her to retain fluid. They said they didn't see any masses, but that it was concerning that her liver was so large. We were called in for a CT the next morning, and lab work in the afternoon.
More hurry up and wait. We were frustrated that we had to initiate the scans and that the doctors hadn't expressed any concern for her large belly on Monday when we were in clinic all day. If its not one thing its another, and we are just tired of all the back and forth and waiting for catastrophic events to happen in order to starting looking at her more closely. The CT showed the enlarged liver, but again no obvious tumors. Still no answers. We went for an additional ultrasound to see if there was any evidence of a clot anywhere that would be restricting the blood flow through her liver. They didn't find one. Still, no answers. Her condition was obviously precarious, and she needed to be watched. We were admitted.
There was a lot going on, and we were feeling the crunch. We were nervous that with the week coming to an end, and a lot of things not available over the weekend, we were going to miss the opportunity to get a leg up on what was going on. There were two possibilities - one is that the neuroblastoma is throughout her liver and that the cells have caused it to become enlarged, and the second is VOD (veno-occlusive disease) which is a side effect of chemo therapy. The only completely conclusive test would be a liver biopsy, but the doctors were not sure that she would be stable enough for one to be done. We had to go to bed that night knowing that we would not know answers right away. This was hard, but we knew that they were working on a plan, and that the plan would be complicated and involve a lot of new and different doctors.
All day today we didn't have many answers. We asked a lot of questions, answered the doctors questions, had a lot of examinations, and started to try and piece things together. They gave her some lasics to try and release some of the fluid from her legs and belly (she is up in weight over 5 lbs), and they gave her some red blood cells because she was quite low. Over the course of the day we met some of the different doctors, and waited to hear if she would be able to have a biopsy or not. They got her MIBG scan scheduled, and managed to get the marker to the hospital (which is a feat with twelve hours notice!), and she was injected for a scan on Friday. We were so glad to be able to have this happen. We really think that it will help to see what is going on sooner and safer than some of the other options. She will also have planning done for radiation so that if it is NB, she will be able to start radiation immediately. We are encouraged by the response in her skull from the last round of radiation, and we are hoping that if it turns out to be NB, it will respond as well to radiation. More waiting, but at least we have a plan.
Right now we feel like we are chasing her disease. We can't seem to get ahead of it, and it is taking turns that the doctors don't even know how to look for. It seems to not want to follow any of the things that are readily available, and it seems like it's got a head up on what we are going to throw at it (maybe its a little bit psychic). We are hoping that soon we can finally get ahead of it, and kick it down once and for all. Right now, we just need to figure out what's going on in her enormous liver.
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