This week is full of doctors appointments interspersed with tons of fun with the baby. The summer has gone by so fast, but we had a nice labor day weekend, and spent time with family and friends.
I had all my scans done over the weekend, and received my results today. I am officially in remission, and the lymph nodes in my neck have shrunk even more than on the last scans. My body doesn't take up any dye, so I'm in full remission. It's a relief to have the final scans done and to be officially on follow up. And I can eat SUSHI!!!
Saoirse had a regular pediatrician appointment (so calm in comparison), and her surgical consult for her abdominal surgery. She is also having pre-op later this week. The meeting with the surgeon went very well. He came in with good news - the tumors had shrunk about 30% since the last scans, and 60-70% since her diagnosis. Also, the tumors show a lot of calcification, which hopefully means that most of the tissue has died. Most of her tumors had been dead tissue when they did the initial biopsy, but seeing the calcification hopefully means that any living tissue is now dead as well. Seeing the difference in the placement of her other organs is astonishing as well! Her kidneys had been pushed way down towards her pelvis and sort of squished in there, and now they are up where they are supposed to be and actually look like kidneys. The tumors have also shrunk away from some of the main blood supply of her kidneys, which means that there should be less complications during the surgery. Saoirse will loose her right adrenal gland, but the surgeon is hoping to save at least part of her left one. Of course, the goal is to remove all the tumor that can be seen and felt, but we are hoping that she can have as normal a life as possible when this is all over, and saving even just 20% of that gland would make that more possible. It's nerve wracking to have her be in surgery for up to 12 hours, but we know that it is to help her heal, and we just have to grin and bear it. We will hope for the best, and hug her lots when she gets out.
After the surgery, Saoirse will be in the hospital for about 2 weeks, so we are doing as much fun stuff as we can before then. We have had a few play dates, and even went up to a friend's in Maine - which I think is the first time she's been to Maine. We are going to storytime tomorrow, and will (weather permitting) be adventuring to the zoo sometime over the weekend. I was even able to go to "moms' night out" with friends last weekend, and we had a blast! I really think we should make it monthly.
Wednesday, September 7, 2011
Thursday, September 1, 2011
A disposable life
We got a new delivery of medical supplies today. A big handle bag filled with plastic syringes, gloves, and other supplies, each individually wrapped in plastic and packaged in more plastic. Half of the liquid in every syringe is thrown out, and none of it is recyclable. We now go through paper towels and sanitizing wipes like crazy, we use disposable diapers and wipes when she's on chemo (so we don't have to try and wash chemicals out of cloth diapers), and we throw away gobs and gobs of plastic every day! For me, this is so hard to deal with. I've always been a recycle-everything, use-dishtowels, cloth-diaper using mom, so this is a huge stretch for me. I know its important, and that all of this waste helps to keep her safe and infection free, but it doesn't make it any easier to accept. We see tons of waste at the hospital too - for the same reasons, to keep everyone safe and infection free - but I am always thinking that there must be some way to cut down on waste and make things more efficient. But this is a problem that I can't fix. So I will not try. All I can do is accept it for now, and go back to my usual patterns when everything is over.
September is Childhood Cancer Awareness Month! Help spread the word about pediatric cancer and share our story with others that you know. 46 children are diagnosed with cancer every day, and 7 will loose their fight. Approximately 700 kids will be diagnosed with Neuroblastoma this year, and nearly 50% of them will not survive. Most children have advanced disease that has spread by the time they are diagnosed. Pediatricians need to be more aware of what to look for and what the EARLY symptoms are, so that disease can be caught while it is still treatable. Help spread the word, and help a family that has been touched by childhood cancer. A call or a hug can sometimes turn a day around.
September is Childhood Cancer Awareness Month! Help spread the word about pediatric cancer and share our story with others that you know. 46 children are diagnosed with cancer every day, and 7 will loose their fight. Approximately 700 kids will be diagnosed with Neuroblastoma this year, and nearly 50% of them will not survive. Most children have advanced disease that has spread by the time they are diagnosed. Pediatricians need to be more aware of what to look for and what the EARLY symptoms are, so that disease can be caught while it is still treatable. Help spread the word, and help a family that has been touched by childhood cancer. A call or a hug can sometimes turn a day around.
Wednesday, August 31, 2011
Nightmares
We have always been lucky having a happy girl who likes her sleep. Saoirse has actually been sleeping through the night since she was about 10 weeks old (yes weeks!). Mike and I got quite accustomed to our quiet nights, sleeping until 7 or 8 am without interruptions. However, with all the hospital visits, her sleeping habits have been interrupted quite a bit. When we are in the hospital, we have to put her completely to sleep before we put her in the crib so she doesn't tangle her IV tubes. This means that we have to repeat "cry it out" almost every time we come home. Usually it only takes one night, and she goes back to going to sleep on her own easily, but that first night is always a nightmare. She is getting more used to going back and forth, but after the Mucositis stay, she had a rough time.
Since Saoirse started treatments, she has had a few nights here and there when she would wake up. At first we thought a lot of it was nausea, and we would give her more meds and feed her, but eventually we realized that some of it was just repeat waking because of the disturbed sleep at the hospital. So we spent a while weaning her off the night feedings and meds, and we eventually got back to full nights of sleeping, with one minor addition - night screaming. It's rare that Saoirse will full on wake up in the night, but she now has many nights when she screams out. She has a blood curdling scream, and it breaks my heart every time I hear her. We know she's usually not fully awake, because a couple times we have gone into her room, found her still lying down with her eyes closed, and if she did look at us and woke up it disturbed her even more. We no longer go into her room, but occasionally there will be nights when she screams out more than once. I just know that she is having nightmares about what she is going through. She may not understand it, and may not seem to notice while she's awake, but I know that she's dreaming about the pain that she's experienced. I hate that I can't keep her from feeling that pain. I only hope that she will eventually forget everything and the nightmares won't continue for too long after she's done with treatments.
The nights are getting better, and since her last hospital stay, she has had less nightmares. Most days we don't hear from her until 6 or 7 am. However those nights that she does scream out aren't any easier for me or Mike. It's just so hard to realize that she has experienced things that make her scared. As a mom, you want to protect your children as much as you can, especially when they are so young, and you don't want them to experience anything that would cause them pain. But when the thing she is afraid of is saving her life, there is no other choice to be made. All we can do is make the good, fun and loving experiences happen as often as they can, and hopefully that's what she start dreaming about.
Since Saoirse started treatments, she has had a few nights here and there when she would wake up. At first we thought a lot of it was nausea, and we would give her more meds and feed her, but eventually we realized that some of it was just repeat waking because of the disturbed sleep at the hospital. So we spent a while weaning her off the night feedings and meds, and we eventually got back to full nights of sleeping, with one minor addition - night screaming. It's rare that Saoirse will full on wake up in the night, but she now has many nights when she screams out. She has a blood curdling scream, and it breaks my heart every time I hear her. We know she's usually not fully awake, because a couple times we have gone into her room, found her still lying down with her eyes closed, and if she did look at us and woke up it disturbed her even more. We no longer go into her room, but occasionally there will be nights when she screams out more than once. I just know that she is having nightmares about what she is going through. She may not understand it, and may not seem to notice while she's awake, but I know that she's dreaming about the pain that she's experienced. I hate that I can't keep her from feeling that pain. I only hope that she will eventually forget everything and the nightmares won't continue for too long after she's done with treatments.
The nights are getting better, and since her last hospital stay, she has had less nightmares. Most days we don't hear from her until 6 or 7 am. However those nights that she does scream out aren't any easier for me or Mike. It's just so hard to realize that she has experienced things that make her scared. As a mom, you want to protect your children as much as you can, especially when they are so young, and you don't want them to experience anything that would cause them pain. But when the thing she is afraid of is saving her life, there is no other choice to be made. All we can do is make the good, fun and loving experiences happen as often as they can, and hopefully that's what she start dreaming about.
Saturday, August 27, 2011
Force Feeding
We had Saoirse's 5th cycle of chemo this week. With a couple of convenience and comfortability hiccups, everything went smoothly. We went into Jimmy Fund and got started pretty quickly, and made sure that things were rolling over at the hospital so we could go over when she was done with chemo. The floor was full of kids, so we ended up in a double room on the dreaded A side, meaning a very small space and no window. It's a hard spot to be with Saoirse because we try to keep her on a tight schedule, and most other kids don't sleep as much as she does. But, we had no other option, so we made it work, and for the third night, Mike was able to go to an empty room with her and they got a good night's sleep. She took this round like a champ, and even kept eating and drinking through all of it. Whenever we go through chemo, we try to keep food in her stomach to help with the nausea. Sadly, chemo makes all food smell and taste different, and sometimes its hard to get Saoirse to eat willingly. This is where the art "force feeding" comes in.
It's not really forcing, per say. The first bite is the biggest challenge, and then after she gets a taste and remembers what it is, she usually will eat more willingly. There are certain foods she won't eat, the most prominent being eggs (they smell horrible - I spent my whole time on chemo not eating eggs hardly at all), but other than that, most of the time she'll eat a pretty balanced meal throughout the day. Distractions are a great way to get her to eat more than she thinks she's eating. The dog is great for this, as Saoirse will always look to see what the dog is doing (and will most of the time laugh or pant which means an open mouth for food!). games and books will sometimes work, but often times, especially in the hospital, we resort to PBS Kids - especially Curious George. Sometimes it looks like we're tormenting her, but getting her to eat is an important part of her getting better. I know some parents don't want to force their kids to eat, but I know that if she eats she will feel much better over all (this is also why I request that her chemo be run during the day so that she can eat while she's getting it). I can't bear the thought of her getting a feeding tube, and I know that if she doesn't keep food in her stomach, she will be more nauseous and therefor less likely to eat later. We have managed to keep her eating through all of her treatments so far, and she has gained three pounds since she was diagnosed. (This is also a good sign that the cancer is no longer taking so much of her nourishment, and hopefully no longer growing.)
One of Saoirse's favorite foods right now is goldfish, so we always keep them around. Many times, getting a few goldfish in when she is nauseous will make her stomach settle enough to eat something more. As we go along we figure out all sorts of little tricks, and now we are working on a new menu line up. She seems to want to eat more and more solid foods, and finding variety has proven to be hard without some planning. So, we have some items that we're planning on making, and I'm kind of excited about her new food repertoire. I'll post more when I've made some. I think maybe I'll post successful recipes too.
It's not really forcing, per say. The first bite is the biggest challenge, and then after she gets a taste and remembers what it is, she usually will eat more willingly. There are certain foods she won't eat, the most prominent being eggs (they smell horrible - I spent my whole time on chemo not eating eggs hardly at all), but other than that, most of the time she'll eat a pretty balanced meal throughout the day. Distractions are a great way to get her to eat more than she thinks she's eating. The dog is great for this, as Saoirse will always look to see what the dog is doing (and will most of the time laugh or pant which means an open mouth for food!). games and books will sometimes work, but often times, especially in the hospital, we resort to PBS Kids - especially Curious George. Sometimes it looks like we're tormenting her, but getting her to eat is an important part of her getting better. I know some parents don't want to force their kids to eat, but I know that if she eats she will feel much better over all (this is also why I request that her chemo be run during the day so that she can eat while she's getting it). I can't bear the thought of her getting a feeding tube, and I know that if she doesn't keep food in her stomach, she will be more nauseous and therefor less likely to eat later. We have managed to keep her eating through all of her treatments so far, and she has gained three pounds since she was diagnosed. (This is also a good sign that the cancer is no longer taking so much of her nourishment, and hopefully no longer growing.)
One of Saoirse's favorite foods right now is goldfish, so we always keep them around. Many times, getting a few goldfish in when she is nauseous will make her stomach settle enough to eat something more. As we go along we figure out all sorts of little tricks, and now we are working on a new menu line up. She seems to want to eat more and more solid foods, and finding variety has proven to be hard without some planning. So, we have some items that we're planning on making, and I'm kind of excited about her new food repertoire. I'll post more when I've made some. I think maybe I'll post successful recipes too.
Summer Fun
We have managed to get a few fun, summery things in this year, even with all the extra hospital time. We took a short canoe trip down the street from the house. It was short because we got stuck between two beaver dams (oops!) but for a first trip for Saoirse, it went well. She wasn’t too sure about the life vest, it is pretty much the size of her, and makes it pretty uncomfortable to sit. I ended up having to hold her in my lap, but she liked that.
After we got out of the hospital from the mucositis, we went camping. We have been trying to go camping all summer, and it never seemed to work out, so we were very excited to go. We just went a few towns away, to Gloucester, and stayed at a really lovely campground. Saoirse loved playing in the dirt and running around. She wasn’t so sure about the tent at first, but when she figured out how to go in and out, she thought it was a fun game. For the most part we had a very smooth trip, but I’m not sure the other campers appreciated the 1am screaming at the top of her lungs. But other than the lack of sleep, things were great, and we can’t wait to take her again.
We have also been playing outside as much as possible when we are home. We have a few play structures in the yard (the neighbors were getting rid of them), and she loves climbing and sliding on the slides. She also has a swing in a tree that she loves. We have gone to the park a few times to meet the other babies, and that’s always fun, but I’m always leery of the germ thing on the play structures. The park has some animals though, and she loves watching the horses and the sheep. Saoirse loves playing outside, and usually gets her hat and brings me my shoes, before rushing to the back door in the morning. She even pulled me out in the rain one day and loved every minute!
The only thing that I feel we have been missing out on is swimming. Saoirse can’t be submerged because of her central line, and sadly she has a great affinity for the water. She gets quite upset when she is near water and can’t play in it. Even bath time is hard because she just wants to splash and play and we have to keep her from getting too wet. Normally we would have spent a lot of time at the quarry this summer, but we have only been a couple of times, because it’s hard to keep her out of the water. We made the mistake of going to the beach one day. I thought she would like playing in the sand and that it would distract her from the water, but she really wanted to go into the ocean, and wasn’t too interested in the sand. So total flop, but there’s next year. We’ll have to find an indoor pool somewhere once her line comes out so she can learn how to swim.
Even though we haven’t been able to have quite as many adventures this summer as we could have, Saoirse has still been able to experience a lot of what summer has to offer. I’m sure we’ll even add some more before the summer is over, and then comes the lovely fall – when it’s nicer to be outside because it isn’t so hot!
Thursday, August 18, 2011
Things....
Things that don’t happen when you are battling cancer…
Weeding the garden
Picking vegetables before they are overgrown
Mowing the whole lawn
Watering the plants
Vacuuming the house
Washing the dog
Painting the fence
Food shopping before running out of food
Painting the house
Organizing the office (or anything else for that matter)
Miscellaneous home repairs/improvements
Laundry
Date night
Sleeping through the night
Things that happen every day when you are battling cancer…
Love
Hugs
Love
Kisses
Love
Laughing
Love
Sunday, August 14, 2011
The Mom Card was Pulled
It has been a long week, ended with an even longer day. We went into the ER with Saoirse on Tuesday night, and were admitted because of her fever. She was started on antibiotics and some pain medicine. I was so frustrated that I went home, and Mike stayed with her. I had spent the night before at the ER, and I really was just spent - and still breaking out in hives. On Wednesday we regrouped with the doctors, although by then Mike was so exhausted, it was hard to stay focused. She received a blood transfusion and was started on morphine for the suspected mucositis, and blood cultures were taken to see if she had any bacterial infection. She was also started on prophylactic antibiotics. She was just miserably in pain. The mucositis was not visible in her mouth, but they could tell just by how she was acting that it was farther down her throat. I could tell she was hungary, but she just wouldn't eat or swallow.
Although her cultures were not growing anything, Saoirse was still spiking fevers. The doctors weren't too concerned that it was anything other than the mucositis, but it was still hard to see her with so much pain and not much we could do to fix it. The only thing they do for mucositis is to let her heal herself as her counts rebound, and give her morphine for pain. When the counts start to rise, they will go to her mucus membranes first to work on healing the inflammation and sores.
The next few days were spent with fevers spiking farther apart, and with a morphine pump to control her pain. She actually started eating some and drinking lots. And she was back to being playful. Constipation is a battle with morphine, so we tried to stay on top of it, but it was hard to balance all the meds. By Friday she was feeling quite well, and we even were able to take her outside for a little play time in the garden. We were hopeful that she would be going home the next day. Friday night was horrible. She was uncomfortable, so I had the nurse push her morphine pump to give her a little boost. At 1 she was woken up by vitals and wouldn't go back to sleep. She dozed a bit in my arms, but didn't want to lie in her crib. I had her morphine button hit a couple times, and finally some Benadryl to try and get some sleep, but it didn't last long. She was up again at 6:30. Turns out that what was bothering her was more the constipation, which the morphine was only worsening. We gave her some meds to help, and just had to wait for them to work. So after no sleep, and being constipated all night and morning, we were really looking forward to going home. She hadn't had a fever in over 36 hours, and she was happy and eating, albeit cranky and tired. Then, she all of a sudden went up to a 38 degree C temperature and threatened our chances of going home. On top of it, we had been moved out of our room (we were in a private, and there was a transplant patient coming over), and were in no-mans-land of a room because we were expected to be out of there. It was so frustrating. We couldn't get any peace and we were stuck.
I just felt that the temperature was a fluke. Once she finally pooped, she was happy and playing and wanting to run around. She wasn't showing signs of feeling bad, and I was convinced that all she needed was a good night's sleep. We talked to the doctors, and after some hemming and hawing and a few tears, we agreed to see where she was after a nap and a couple hours. More waiting and more limbo. Of course I wanted to take her home no matter what, but Mike was going to make sure that we did what was best for her. Even though she was woken up from her nap, her temp did go down on it's own - it was 37.6 when she woke up. She played and Mike talked to the doctors. They still were leaning towards keeping her overnight to make sure that she was ok, but I still felt that what she really needed was a good night of uninterrupted sleep to start healing, and she wasn't going to get that in the hospital. The doctors agreed to send us home as long as her temp was still going down in an hour (it took that long for prescriptions and discharge anyway), and that we had to watch her like crazy to make sure she didn't show any signs of any kind of infection. I knew it was the best for her, and her temp was down to 37.2 in an hour, and we were on our way out the door. Of course they sent us away with tons of antibiotics and medicines for prevention of any infections, but I was much happier to do that and get her some rest, than to stay another sleepless night.
Saoirse was thrilled to go home. She said bye to all the doctors, and we went on our way. She napped in the car, and we got home in time for some outside play before bed. She was happy and laughing, and other than getting her to take her medicine, it was an easy night. We checked her temp, still around 99 F, before bed, and she conked out! I checked her temp a couple hours later, still going down, and we went to bed. She did wake up when Mike went in to check her temp at 3, but she dozed for a bit, and was up for good around 5 (I'm pretty sure she was just really hungary by then). The good news - her temp was back to normal, and she was eating and drinking better than she had in days. This time, normalcy was the best medicine, and some dog loving. I trust the doctors and their judgement, but sometimes Mom still knows best.
Although her cultures were not growing anything, Saoirse was still spiking fevers. The doctors weren't too concerned that it was anything other than the mucositis, but it was still hard to see her with so much pain and not much we could do to fix it. The only thing they do for mucositis is to let her heal herself as her counts rebound, and give her morphine for pain. When the counts start to rise, they will go to her mucus membranes first to work on healing the inflammation and sores.
The next few days were spent with fevers spiking farther apart, and with a morphine pump to control her pain. She actually started eating some and drinking lots. And she was back to being playful. Constipation is a battle with morphine, so we tried to stay on top of it, but it was hard to balance all the meds. By Friday she was feeling quite well, and we even were able to take her outside for a little play time in the garden. We were hopeful that she would be going home the next day. Friday night was horrible. She was uncomfortable, so I had the nurse push her morphine pump to give her a little boost. At 1 she was woken up by vitals and wouldn't go back to sleep. She dozed a bit in my arms, but didn't want to lie in her crib. I had her morphine button hit a couple times, and finally some Benadryl to try and get some sleep, but it didn't last long. She was up again at 6:30. Turns out that what was bothering her was more the constipation, which the morphine was only worsening. We gave her some meds to help, and just had to wait for them to work. So after no sleep, and being constipated all night and morning, we were really looking forward to going home. She hadn't had a fever in over 36 hours, and she was happy and eating, albeit cranky and tired. Then, she all of a sudden went up to a 38 degree C temperature and threatened our chances of going home. On top of it, we had been moved out of our room (we were in a private, and there was a transplant patient coming over), and were in no-mans-land of a room because we were expected to be out of there. It was so frustrating. We couldn't get any peace and we were stuck.
I just felt that the temperature was a fluke. Once she finally pooped, she was happy and playing and wanting to run around. She wasn't showing signs of feeling bad, and I was convinced that all she needed was a good night's sleep. We talked to the doctors, and after some hemming and hawing and a few tears, we agreed to see where she was after a nap and a couple hours. More waiting and more limbo. Of course I wanted to take her home no matter what, but Mike was going to make sure that we did what was best for her. Even though she was woken up from her nap, her temp did go down on it's own - it was 37.6 when she woke up. She played and Mike talked to the doctors. They still were leaning towards keeping her overnight to make sure that she was ok, but I still felt that what she really needed was a good night of uninterrupted sleep to start healing, and she wasn't going to get that in the hospital. The doctors agreed to send us home as long as her temp was still going down in an hour (it took that long for prescriptions and discharge anyway), and that we had to watch her like crazy to make sure she didn't show any signs of any kind of infection. I knew it was the best for her, and her temp was down to 37.2 in an hour, and we were on our way out the door. Of course they sent us away with tons of antibiotics and medicines for prevention of any infections, but I was much happier to do that and get her some rest, than to stay another sleepless night.
Saoirse was thrilled to go home. She said bye to all the doctors, and we went on our way. She napped in the car, and we got home in time for some outside play before bed. She was happy and laughing, and other than getting her to take her medicine, it was an easy night. We checked her temp, still around 99 F, before bed, and she conked out! I checked her temp a couple hours later, still going down, and we went to bed. She did wake up when Mike went in to check her temp at 3, but she dozed for a bit, and was up for good around 5 (I'm pretty sure she was just really hungary by then). The good news - her temp was back to normal, and she was eating and drinking better than she had in days. This time, normalcy was the best medicine, and some dog loving. I trust the doctors and their judgement, but sometimes Mom still knows best.
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