Amanda is off the steroids. Yeah!!!!!! We get a break for a few weeks. She already slept better last night and is talking and smiling a little bit more. Her appetite is still insane.
Her Friday clinic day was full of angry outbursts and lamenting about starving. This is becoming the norm. The doctor and I just talked over her screaming. They must be used to it too. We discussed the next treatment round, which should begin Wednesday. We are waiting for the results of her bone marrow test. There are three different treatment rounds that have been proposed. We have already been eliminated from the most aggressive one based on her DNA. They are able to detect which DNA malfunctions in the production of leukemia cells. She had the better chromosomes malfunction. It's amazing to me what they know about this disease. I am praying for the less invasive treatment. It is far fewer medications. We also have to choose between the clinical trial and standard treatment. This means having her in a research study that increases certain medications. But I know that it is because of past research studies that the cure rate has increased for Amanda. I have a lot of respect for people that have taken the risk to try new treatments that we are now the benefactors to.
Regardless of what track we are on, she will have about 8 weeks of mostly new medications. These will be the ones that cause the traditional cancer side-effects; hair loss and nausea. We'll see how she reacts. After that, it will be another intensive round with increased medications for up to two months. If all goes well, she goes into long term maintenance, which is generally a two year course of monthly chemo treatments, occasional steroids, and a few other drugs thrown into the mix. It's one treatment round at a time, otherwise, it is very overwhelming to think about.
Saturday, May 30, 2009
Thursday, May 28, 2009
PICKLES
The food cravings are insane! She can eat a full, adult size meal every three hours. She goes into a complete rage when she doesn't get food immediately. And she's smart enough to know when I'm trying to postpone the next meal or ignore her, which makes her even more mad. I grow weary of the bedtime meal, 3 am salty snack food cravings, 6 am full course breakfast demands (bedside snacks are not good enough anymore), second breakfast, brunch....you get the idea. Pickles are the latest greatest thing. She's never liked them before. I think she ate an entire jar in about three days time. Sunday night we were frantically trying to find neighbors that had a jar on hand, only to sing the praises of my food storage efforts when a jar was located in the back of the cold storage room. It gave a whole new meaning to the phrase "emergency preparedness."
All this being said, I don't really recognize my daughter anymore. Physically she looks nine months pregnant and can hardly walk. Imagine having nine months of weight gain happen in three weeks. Her poor muscles just can't keep up. This is triggering a lot of pain in her joints. We find ourselves supporting her to just walk so she doesn't fall. She's loosing the ability to even care for herself because she's too weak.
Emotionally she's grasping how cancer is not a fun thing to deal with. There's been a lot of poor me crying spells. The words "stupid cancer" are muttered many times a day. She does not act anything like her normal talkative self. There's not as much smiling or playing. My days are filled with a lot of tantrums over trivial matters. She gets mad that Erin is even in the same room as her. Amanda knows that she's not acting normally, which makes her get down a lot. I keep reminding her, and myself, that it will not stay this way forever. And as she puts it, May 2009 has just been really bad!
Tomorrow is our last treatment day of our "intensive" month. I am nervous to go into the next phase. There's a lot of anxiety that comes with anticipating the side effects of a new medication regiment. But, I am looking forward to having more of my daughter back as she will not be on this high a dose of steroids again, if all goes well. I keep telling myself that the doctor's said the first month is the hardest. We'll meet with her physician Wednesday to discuss the details of her next treatment round.
All this being said, I don't really recognize my daughter anymore. Physically she looks nine months pregnant and can hardly walk. Imagine having nine months of weight gain happen in three weeks. Her poor muscles just can't keep up. This is triggering a lot of pain in her joints. We find ourselves supporting her to just walk so she doesn't fall. She's loosing the ability to even care for herself because she's too weak.
Emotionally she's grasping how cancer is not a fun thing to deal with. There's been a lot of poor me crying spells. The words "stupid cancer" are muttered many times a day. She does not act anything like her normal talkative self. There's not as much smiling or playing. My days are filled with a lot of tantrums over trivial matters. She gets mad that Erin is even in the same room as her. Amanda knows that she's not acting normally, which makes her get down a lot. I keep reminding her, and myself, that it will not stay this way forever. And as she puts it, May 2009 has just been really bad!
Tomorrow is our last treatment day of our "intensive" month. I am nervous to go into the next phase. There's a lot of anxiety that comes with anticipating the side effects of a new medication regiment. But, I am looking forward to having more of my daughter back as she will not be on this high a dose of steroids again, if all goes well. I keep telling myself that the doctor's said the first month is the hardest. We'll meet with her physician Wednesday to discuss the details of her next treatment round.
Tuesday, May 26, 2009
GOING BALD
The hair loss begins. Sunday night Amanda's hair started coming out. Just brushing her hair filled up the brush in a few strokes. So, I had to sadly say goodbye to her long hair. She has wanted it cut for a while. I told her she had to wait until after her baptism so it could be braided up. But then she got sick and missed her hair appointment, which I am now glad for since it gave us a chance to save a pony tail for her. I've just enjoyed having her pretend to be a puppy dog every time I put it in pig tails. I think as her mom I may miss her long hair more than she will. She will never have it this long again and enjoy being an animal at the same time, at least I hope so.
We sat down and talked about baldness as a side effect of her chemo. She made a face like she'd eaten something sour. Fortunately, Amanda is not very concerned about appearances. As she put it herself, "I'm more the artistic, creative type." I'd like to say she is taking it well, but we will see once it all falls out - most likely within a few weeks, or even days at the rate it is shedding. She did say that she does not want people to think she looks like a boy. She was easily reassured by the discussion of cute bandannas. And, she wants to keep her hair on Grandma's Wii game character. This was a BIG DEAL. She seems to be at a reasonable age to handle it well. For now, I cut her hair in a short bob. It's a good thing she's in isolation because I am not very good at styling my own hair, let alone cutting my daughter's. Who knows, baldness might look better than the cut she's got!
Friday, May 22, 2009
Making Progress
I don't know if there really is such a thing as a "good" clinic day. Nothing about going to clinic is good to Amanda. Watching other healthy kids ride their scooters to school on our way down to Primary's doesn't make it much of a good day for me either. But, we are adjusting to the new routine, we enjoy the great staff at Primary's, and she didn't have to be sedated today which meant she was able to eat before we went. Eating made a BIG difference towards a more pleasant Amanda. She's making progress with handling the anticipation of treatment days and is less frightened as she realizes that the whole process requires virtually no pain. And today's nurse seemed to know what she was doing, which helped.
More importantly, she is making progress medically. The doctor told us that when she was first diagnosed with cancer, her bone marrow was 87% leukemia cells. By day 29 of her treatment the target is to get her to 5%. We are 22 days in and her bone marrow biopsy from last week shows 4%. We are amazed at this great response. Additionally, as of today she is no longer neutropenic. In fact, her blood counts today showed her with a stronger immune system than when she entered the hospital. It is still a very poor immune system that continues to require a lot of caution. But this shows that her own blood cells are functioning better now that they are not as crowed by the cancer. This is what we want.
We can say that it has been two steps forward, one step back. She's getting better medically, but her medication side effects are getting worse. She is struggling to walk, has gained an insane amount of weight that her muscles can barely handle, is starting to have more nerve and joint pain, and she's still very lethargic most the day. Oh and we cannot forget extreme anger and mood problems (Scott has labeled them "roid rage"). But, these are all common side effects. If all continues to go well she will begin a different treatment regiment in June and many of these side effects will decline.
More importantly, she is making progress medically. The doctor told us that when she was first diagnosed with cancer, her bone marrow was 87% leukemia cells. By day 29 of her treatment the target is to get her to 5%. We are 22 days in and her bone marrow biopsy from last week shows 4%. We are amazed at this great response. Additionally, as of today she is no longer neutropenic. In fact, her blood counts today showed her with a stronger immune system than when she entered the hospital. It is still a very poor immune system that continues to require a lot of caution. But this shows that her own blood cells are functioning better now that they are not as crowed by the cancer. This is what we want.
We can say that it has been two steps forward, one step back. She's getting better medically, but her medication side effects are getting worse. She is struggling to walk, has gained an insane amount of weight that her muscles can barely handle, is starting to have more nerve and joint pain, and she's still very lethargic most the day. Oh and we cannot forget extreme anger and mood problems (Scott has labeled them "roid rage"). But, these are all common side effects. If all continues to go well she will begin a different treatment regiment in June and many of these side effects will decline.
Monday, May 18, 2009
NEUTROPENIC
I know many of you are wondering how Amanda is looking through this whole process. We'll update more pictures along the way. Here she is happily doing art projects with her soon to be missed hair.Along with a new picture of her, we'd like to welcome you to the new world of medical terminology that we've had a crash course in. Our vocabulary word for the day is "NEUTROPENIC."
Being neutropenic means that Amanda's white blood count, particularly the cells that fight infection, are too low to work effectively now. Our biggest concern is bacterial infections as they are quickly the most life threatening. A viral infection can turn in to this and would also mean several days in the hospital. So in other words, we are officially in "isolation" for a few weeks as her counts are going to continue to drop during her intense chemo treatments. The doctor warned us that this year's cold and flu has extended longer than usual and that there is a particular virus going around that is proving to be very hard on leukemia patients. Our main job in life is just keeping her safe right now. As such, we've set up some guidelines that we want people to be aware of.
- no people over to our house that have children under the age of five in their home.
- no school age friends or adults of school aged children until school has been out at least a week or two.
- we'd prefer no unexpected visitors. please call first so we can tell you if it's a good day or not to stop by. We will likely stay outside to talk. But don't come if you are sick or have been around sick people.
- We're going to try and keep contacts to a norm for a while to help things settle down. This means we'd prefer family and friends she's used to seeing.
- Erin will be in included in our "isolation" plans. Having her sick means we get it too. We appreciate the babysitting offers, but we'd prefer to not have to ship her off to relatives again from illness. She's way too ornery to readjust again!
Friday, May 15, 2009
Rough Treatment Day
We anticipate mood swings and anxiety the night before treatment days. Amanda did better yesterday as she has a better understanding of what Friday treatment days are all about. But, it still proves to be a very rough parenting day compared to what is normal. So I'm relieved to get her to bed only to be woken at 3:00 am; she's crying that she wants to eat. This goes one for quite a while. 6:00 am; She tantrums about wanting to eat for about 45 minutes until she actually wears herself out back to sleep. Come to find out she's been raiding the pantry before I wake up, so that's why she was so upset. I NEVER expected one of our greatest cancer challenges to be about wanting to eat excessive amounts of food! I would rather this than vomiting though. She lamented most of the trip down to primary's and into the building about not being able to eat and how much she hates cancer. Finally, the child life specialist distracted her and she magically was fine. I was impressed with how brave she was accessing her port. The needle did not seem to bother her much. Once she knows what to expect she seems much better at coping. Things were great until they could not get her line to draw blood, which is part of administering chemo. All the progress we have made about being brave may be destroyed now. The nurse tried for over 30 minutes to get it to work. This involved moving her needle around in an effort to get better access to her vein. I knew it had to be uncomfortable just from watching it. They pulled it out and tried another access needle. Her skin was still slightly numbed, but noticeably red and tender. And she progressively got more annoyed (and hungry). The nurse finally decided getting somebody more experienced was a good idea after 20 minutes (kind of a no brainer to me). The two nurses tried together putting her in different yoga style positions. She was beyond upset, but it finally worked. After that, going to RTU to be put out for a bone marrow aspirate seemed like a piece of cake. She was so happy to get away from the nurses and get her "nap" over with so she could eat. She's now happily doped up on pain medicine and full of processed food craving goodness. I reminded her that it's the longest time before we have to go back. She's now much happier. And the good news for us is that she is progressing well with her treatment. Her levels are dropping (which I'll explain after my fatigued body recovers in a few days). But for now, everything is going to plan with no setbacks - yeah!!!
Thursday, May 14, 2009
A BETTER DAY
Each day is varied. We are noticing a pattern with her steroids. The first 5 hours after she takes them each morning is the worst time for being ornery and having intense food cravings. I complain to Scott that as a typical mom, I get the tough Amanda and he gets the sweet Amanda at night. She spends almost every morning complaining that she does not feel like herself and crying about how she hates cancer. Her last round of chemo seemed to wipe her out more, but yesterday she spent the majority of the day in a good mood. She looked and acted stronger. She felt well enough to do art projects like she's been wanting to all week. She was very talkative and told me what animal she was pretending to be for the day. It was encouraging to see her bounce back to a remnant of her normal self even if it only lasted for a few hours. Tomorrow we'll go through another round of chemo that will start the fatigue cycle again. It is anticipated she will be at her "worst" at the end of the month as the current round of intense chemo slowly destroys the blood cells and helps her bone marrow return to working properly. As such, we are enjoying the better days when we can!
Tuesday, May 12, 2009
not moody, just pregnant
I'm convinced that Amanda is not moody, just pregnant. Her belly looks more pregnant than mine, she has a bigger appetite than I do, I think her hair is getting thicker while mine is falling out and her cravings are getting a out of control. Yesterday was waffles with strawberry sauce and whip cream, both in the morning and night. And today she just about came unglued that the pizza shop doesn't open at 8:00 in the morning and that I'm out of bread sticks, with dipping sauce, ham and pineapple pizza, etc..... It's a good thing she started this process thin because she is not going to stay that way for long.
On the not so humorous side, she is starting to grasp that cancer is a big deal and that it really stinks. She is starting to say how much she hates cancer. Yesterday she was so upset because all she wanted to do was art work and she was too tired to sit at the table to do it. I let her lament, pumped her full of pizza and took her outside to paint rocks with her aunt. The fresh air and sun did her good. I told her that since the flower pot seems to always die each summer, at least it will look pretty with her rocks and I'll let her be in charge of growing some seeds in it. We promise to post some future pictures of her adventures. For now, it's mostly just laying on the couch as she is progressively getting more tired and weak.
And a big thank you must be sent out to her uncle Rick. We're trying to find creative ways to keep her active, but safe at the same time. She still fits in the bike cart and he's agreed to take her on weekly bike rides. He's the only one in shape enough to handle her rapid weight gain. He took her around the neighborhood several times. She had a parade of kids following her as they all seemed excited to finally see her again. It made her day!
On the not so humorous side, she is starting to grasp that cancer is a big deal and that it really stinks. She is starting to say how much she hates cancer. Yesterday she was so upset because all she wanted to do was art work and she was too tired to sit at the table to do it. I let her lament, pumped her full of pizza and took her outside to paint rocks with her aunt. The fresh air and sun did her good. I told her that since the flower pot seems to always die each summer, at least it will look pretty with her rocks and I'll let her be in charge of growing some seeds in it. We promise to post some future pictures of her adventures. For now, it's mostly just laying on the couch as she is progressively getting more tired and weak.
And a big thank you must be sent out to her uncle Rick. We're trying to find creative ways to keep her active, but safe at the same time. She still fits in the bike cart and he's agreed to take her on weekly bike rides. He's the only one in shape enough to handle her rapid weight gain. He took her around the neighborhood several times. She had a parade of kids following her as they all seemed excited to finally see her again. It made her day!
Saturday, May 9, 2009
First day of outpatient
We had our first day of outpatient services yesterday. We know many people are wondering how it went. In taking care of Amanda, Scott and I are pretty run down. The adrenaline finally wore off. After several days of not taking very good care of myself Scott had to remind me that I'm still on a PICC line with IV's and that it was time to just rest and rehydrate. I must have looked pretty bad. After some much needed rest and IV time, I can devote some time to this. So if we are ever behind on updates, know we are just recovering and that things are not necessarily bad.
Amanda dreaded Friday. I think that Thursday evening was likely worse than Friday. Her anxiety was intense. It is always at its highest when we have to approach something new. I keep reverting back to my child psychology training to try and pull out all the tricks, but she would challenge even the most experienced clinician. They have already labeled her as "very anxious and fearful" in her file and have therapists working with her before every new procedure. We just give her the time to talk about what she's scared about, teach her to pray, and help her find activities to keep her mind busy (Thank you Scott for enjoying video games with her!!!). It is working and instead of waking up scared, she woke up hungry. "I want a waffle!!!!!" But it was an RTU day (which means they put her to sleep for some of her procedures) and she couldn't eat. She sulked on her bed and said, "That hospital sure doesn't care about kids like they say they do. They let us poor sick kids not eat. That's not caring!!" Corn dogs and waffles were the craving of the day and I think we heard these words over a 100 times yesterday. She was VERY happy to eat again and made excessive MMMM noises, but that didn't happen until 2:00. I'm not looking forward to future RTU days! She not happy hungry even when she's not on steroids.
As for her anxiety, she had about five minutes of screaming out of fear before they accessed her port, but then she was fine. Overall, she handled it quite well and hopefully next week will go smoother now that she knows what to expect. The port is a small rubber disk surgically implanted in her chest that has an IV line to her heart. This is how she receives her "chemo" medication at the clinic. It is numbed before treatment and a small IV needle is stuck in. This way she doesn't have an IV hanging out of her chest for the next two years, which allows her to look normal and go swimming in the future. She hardly noticed them inserting it and the Chemo (for now) takes less than five minutes. The time down there is largely contributed to health updates and waiting for lab results on her blood work.
The RTU clinic is where she is sedated and bone marrow samples are taken. This will happen occasionally throughout her treatment to determine how well the chemo is working. She also had to have a lumbar puncture. Although she does not have the leukemia in her spinal fluid, they have to prevent it from going there. So she has a chemo drug injected into her spine while she is sedated. This procedure it proving to be the most challenging of her treatments so far and yesterday was a new drug for her (our last new one this month). I get nervous with each new one because I don't know how she will react. This Lumbar puncture (LB) was better than the last as the medication seemed less harsh. But the recovery is a good 24 hours of looking and acting like you would expect a cancer patient to look and act. It triggered a good headache, a lot of back pain, she looked sick, and she slept a lot. But I'm happy to report that today she is quite active and talkative. She is in no way acting like her hyperactive self, but she is happy and starting to play with toys again. And the craving for today is crepes with strawberries. The food cravings are becoming a reassuring way of knowing that she is doing OK, as humorous as they are becoming.
We will have treatment every Friday for this month. RTU days are varied and contingent on her lab results. Her blood work shows that her ability to fight infections is dropping quickly, as expected. We plan to lock down into full germaphobia mode in a week or two. We're starting to modify our lives to accommodate this. I officially requested to home school her and plan to turn our semi finished family room into a temporary school room. Never would I ever imagined myself home schooling! I have a lot of researching to do about this and could use any advise from home schooler's. Aside from us all being quite tired physically and emotionally, we are holding up and adjusting to our quickly adjusting lifestyle.
Amanda dreaded Friday. I think that Thursday evening was likely worse than Friday. Her anxiety was intense. It is always at its highest when we have to approach something new. I keep reverting back to my child psychology training to try and pull out all the tricks, but she would challenge even the most experienced clinician. They have already labeled her as "very anxious and fearful" in her file and have therapists working with her before every new procedure. We just give her the time to talk about what she's scared about, teach her to pray, and help her find activities to keep her mind busy (Thank you Scott for enjoying video games with her!!!). It is working and instead of waking up scared, she woke up hungry. "I want a waffle!!!!!" But it was an RTU day (which means they put her to sleep for some of her procedures) and she couldn't eat. She sulked on her bed and said, "That hospital sure doesn't care about kids like they say they do. They let us poor sick kids not eat. That's not caring!!" Corn dogs and waffles were the craving of the day and I think we heard these words over a 100 times yesterday. She was VERY happy to eat again and made excessive MMMM noises, but that didn't happen until 2:00. I'm not looking forward to future RTU days! She not happy hungry even when she's not on steroids.
As for her anxiety, she had about five minutes of screaming out of fear before they accessed her port, but then she was fine. Overall, she handled it quite well and hopefully next week will go smoother now that she knows what to expect. The port is a small rubber disk surgically implanted in her chest that has an IV line to her heart. This is how she receives her "chemo" medication at the clinic. It is numbed before treatment and a small IV needle is stuck in. This way she doesn't have an IV hanging out of her chest for the next two years, which allows her to look normal and go swimming in the future. She hardly noticed them inserting it and the Chemo (for now) takes less than five minutes. The time down there is largely contributed to health updates and waiting for lab results on her blood work.
The RTU clinic is where she is sedated and bone marrow samples are taken. This will happen occasionally throughout her treatment to determine how well the chemo is working. She also had to have a lumbar puncture. Although she does not have the leukemia in her spinal fluid, they have to prevent it from going there. So she has a chemo drug injected into her spine while she is sedated. This procedure it proving to be the most challenging of her treatments so far and yesterday was a new drug for her (our last new one this month). I get nervous with each new one because I don't know how she will react. This Lumbar puncture (LB) was better than the last as the medication seemed less harsh. But the recovery is a good 24 hours of looking and acting like you would expect a cancer patient to look and act. It triggered a good headache, a lot of back pain, she looked sick, and she slept a lot. But I'm happy to report that today she is quite active and talkative. She is in no way acting like her hyperactive self, but she is happy and starting to play with toys again. And the craving for today is crepes with strawberries. The food cravings are becoming a reassuring way of knowing that she is doing OK, as humorous as they are becoming.
We will have treatment every Friday for this month. RTU days are varied and contingent on her lab results. Her blood work shows that her ability to fight infections is dropping quickly, as expected. We plan to lock down into full germaphobia mode in a week or two. We're starting to modify our lives to accommodate this. I officially requested to home school her and plan to turn our semi finished family room into a temporary school room. Never would I ever imagined myself home schooling! I have a lot of researching to do about this and could use any advise from home schooler's. Aside from us all being quite tired physically and emotionally, we are holding up and adjusting to our quickly adjusting lifestyle.
Wednesday, May 6, 2009
There's no place like home
Amanda is home and is doing well. I can tell by the questions we get from people that there is so much more explaining to do about her health, but I think I'll fill that in on another day. For now I'll just say that she is adjusting well to all the medications. She's a lot more weak and tired, but looks much better to us than when she was admitted to the hospital. I'm happy to have a doctor that keeps reminding us that we brought her in sick, they are making her better. Despite medication side effects, the chemo is working the way we want it to.
For now I'll just let you know how she's emotionally holding up. When I was told her diagnosis my first question to the doctor was, "how sick will she get?" Having been so deathly ill myself the past few months I was very fearful of having to watch my daughter endure the same misery at such a young age. I'm learning that the better question would have been, "how will she hold up mentally." We are going to have days she does not fell well. But we're finding the bigger challenge is helping her to cope. One of the medications she is on causes a lot of moodiness, something Amanda is already very good at. As the doctor put it, "Your daughter is going to have 28 days of the worst PMS ever! She will be demanding like she has PMS, she will crave food like she has PMS, and she will bloat up like she has PMS." This has proven to be very true! Being in the hospital made this much worse. She seems to be calming down now that she is home. But it doesn't help that one of her meds compounds the fact that she is already struggling to cope. She doesn't understand how she went to talk to a doctor and instead they held her captive for over a week and hurt her with needles and strange tests. That sounds scary even for an adult! She spent about three hours yesterday being very, very depressed. It's hard to watch and deal with, but it is understandable and we know that she needs to get those feelings out. She has received so many gifts that I was getting concerned about her getting too spoiled. I'm finding with a traumatized kid that the gifts, cards, and emails represent love and support to her. All the kind gestures have been so helpful and an excellent redirection to get her out of her sad places. A cancer survivor informed us that feeling loved means healing and every kind act reminds her of that. So thank you so much to all of you for your support. And as part of her moodiness, she happily bounced out of her depressive funk yesterday and went about the rest of the day as my shadow, demanding salty snacks and cookies along the way.
Just so you know, in an attempt to help her cope, as few things the child psychologist recommended we not talk about with her yet are the hair loss (should take a few weeks still) and duration of her illness, as she's not ready to handle it yet. I'm also adding the fact that she will be changing schools next fall -- she was recently accepted to a gifted and talented program at Mountain View Elementary. We also are not talking much about my pregnancy with her to try and keep things as focused on her as possible. Eventually she'll be able to adjust to all of these changes, but it's too much for her to comprehend right now.
As for Scott and myself, we're holding up and must thank everybody for the support we are receiving. The ward youth just showed up and did our yard work for us yesterday. Our family deeply sanitized the home for us to come back to (attacking 7 years of neglected dust and grime). All of their efforts easily equaled 50 hours of labor that we just cannot commit to right now. We have already received so much help with my health over the past four months that it is so touching to us that people have more to offer us. We come into this experience already quite weary as a family. I am still struggling with my health and we demand a lot out of Scott in caring for us girls. As a family, we are definitely facing our challenges. We cannot do this alone and know that all of you are going to help us get through this. We have people of so many different faiths praying and fasting for us. It is especially touching to me to have people that don't even know us doing what they can to think of us and support us. We believe so strongly in God and know those thoughts and prayers are helping us. We also know that although we can in no way repay everybody, your lives will be enriched for having faith and doing your best to help another person.
For now I'll just let you know how she's emotionally holding up. When I was told her diagnosis my first question to the doctor was, "how sick will she get?" Having been so deathly ill myself the past few months I was very fearful of having to watch my daughter endure the same misery at such a young age. I'm learning that the better question would have been, "how will she hold up mentally." We are going to have days she does not fell well. But we're finding the bigger challenge is helping her to cope. One of the medications she is on causes a lot of moodiness, something Amanda is already very good at. As the doctor put it, "Your daughter is going to have 28 days of the worst PMS ever! She will be demanding like she has PMS, she will crave food like she has PMS, and she will bloat up like she has PMS." This has proven to be very true! Being in the hospital made this much worse. She seems to be calming down now that she is home. But it doesn't help that one of her meds compounds the fact that she is already struggling to cope. She doesn't understand how she went to talk to a doctor and instead they held her captive for over a week and hurt her with needles and strange tests. That sounds scary even for an adult! She spent about three hours yesterday being very, very depressed. It's hard to watch and deal with, but it is understandable and we know that she needs to get those feelings out. She has received so many gifts that I was getting concerned about her getting too spoiled. I'm finding with a traumatized kid that the gifts, cards, and emails represent love and support to her. All the kind gestures have been so helpful and an excellent redirection to get her out of her sad places. A cancer survivor informed us that feeling loved means healing and every kind act reminds her of that. So thank you so much to all of you for your support. And as part of her moodiness, she happily bounced out of her depressive funk yesterday and went about the rest of the day as my shadow, demanding salty snacks and cookies along the way.
Just so you know, in an attempt to help her cope, as few things the child psychologist recommended we not talk about with her yet are the hair loss (should take a few weeks still) and duration of her illness, as she's not ready to handle it yet. I'm also adding the fact that she will be changing schools next fall -- she was recently accepted to a gifted and talented program at Mountain View Elementary. We also are not talking much about my pregnancy with her to try and keep things as focused on her as possible. Eventually she'll be able to adjust to all of these changes, but it's too much for her to comprehend right now.
As for Scott and myself, we're holding up and must thank everybody for the support we are receiving. The ward youth just showed up and did our yard work for us yesterday. Our family deeply sanitized the home for us to come back to (attacking 7 years of neglected dust and grime). All of their efforts easily equaled 50 hours of labor that we just cannot commit to right now. We have already received so much help with my health over the past four months that it is so touching to us that people have more to offer us. We come into this experience already quite weary as a family. I am still struggling with my health and we demand a lot out of Scott in caring for us girls. As a family, we are definitely facing our challenges. We cannot do this alone and know that all of you are going to help us get through this. We have people of so many different faiths praying and fasting for us. It is especially touching to me to have people that don't even know us doing what they can to think of us and support us. We believe so strongly in God and know those thoughts and prayers are helping us. We also know that although we can in no way repay everybody, your lives will be enriched for having faith and doing your best to help another person.
Tuesday, May 5, 2009
A Quick Thank You
It's late and I should be going to bed. But I wanted to give a big "thank you" out to everyone who has shared their thoughts and support for Amanda and our family. We have been truly blessed with great family, friends, neighbors, nurses, doctors, co-workers, and people we haven't even met yet that have been great. I'll quickly share two things that touched me today and then I'll give an update on Amanda.
First, I was surprised by getting back to work today and finding a gift for Amanda on my desk. The gift was from the competitors a couple of buildings behind our building that had heard about Amanda and wanted to do something nice. They picked her up a Webskins turtle and she absolutely loved it. Amanda loves Webskins and was happy she could get back onto the Webskins website at home since she couldn't get on while at the hospital. I have been touched many times by those who have not even met Amanda or know us very well but have reached out to offer support.
Second, when I came home I arrived at a sight I had never seen before. There were a good 10-20 women and young women working in our yard. They were mowing the lawn, pulling weeds and edging. It was a sight to be seen. I told them they may have put our yard into shock since it usually doesn't get that much care for the entire year. They put a lot of hard work into it and it looks great. When they were done the young men from our ward then showed up and started trimming the trees in the back yard. I am truly grateful to all that have sacrificed their time, efforts and talents for our behalf. It is hard not to be overcome by emotions when we see and feel the support that has been pouring out on us.
Even the number of followers to this blog has exceeded my expectations and is greatly appreciated. I try to keep Amanda updated with what is being put on the blog and show her all the people that have been reading about her and interested in how she is doing. She was happy to be home today but for a while this morning had to deal with the fact that it wasn't all over and she would have to go back to the hospital for more chemo, blood draws, bone marrow draw, etc. on Friday. She will have to deal with the changes a little at a time. She seems to be handling everything so well, so much better than I would have, anyway. She understands that she won't be able to play with others like she used to and we have to come up with other things to keep her mind busy.
One last thing before I go to bed. We've been impressed with how Amanda was able to swallow pills at the hospital and she did very well with them. However, when I went to the pharmacy last night to pick up her meds I wasn't ready for what they handed me. They didn't have the larger dose of one of her meds that she would have to take twice a day. They smaller dose the pharmacy had would mean 6 pills in the morning and 5 at night daily. For a young girl that is not use to swallowing pills that is a bunch. Amanda has taken it like a champ and doesn't really complain. She is even taking them 2 at a time (the smaller ones.)
Again, thank you for following along on Amanda's battle of leukemia. She knows she is loved very much and it is confirmed everyday by all of our family and friends and again, for that we are indeed grateful.
Thank you.
First, I was surprised by getting back to work today and finding a gift for Amanda on my desk. The gift was from the competitors a couple of buildings behind our building that had heard about Amanda and wanted to do something nice. They picked her up a Webskins turtle and she absolutely loved it. Amanda loves Webskins and was happy she could get back onto the Webskins website at home since she couldn't get on while at the hospital. I have been touched many times by those who have not even met Amanda or know us very well but have reached out to offer support.
Second, when I came home I arrived at a sight I had never seen before. There were a good 10-20 women and young women working in our yard. They were mowing the lawn, pulling weeds and edging. It was a sight to be seen. I told them they may have put our yard into shock since it usually doesn't get that much care for the entire year. They put a lot of hard work into it and it looks great. When they were done the young men from our ward then showed up and started trimming the trees in the back yard. I am truly grateful to all that have sacrificed their time, efforts and talents for our behalf. It is hard not to be overcome by emotions when we see and feel the support that has been pouring out on us.
Even the number of followers to this blog has exceeded my expectations and is greatly appreciated. I try to keep Amanda updated with what is being put on the blog and show her all the people that have been reading about her and interested in how she is doing. She was happy to be home today but for a while this morning had to deal with the fact that it wasn't all over and she would have to go back to the hospital for more chemo, blood draws, bone marrow draw, etc. on Friday. She will have to deal with the changes a little at a time. She seems to be handling everything so well, so much better than I would have, anyway. She understands that she won't be able to play with others like she used to and we have to come up with other things to keep her mind busy.
One last thing before I go to bed. We've been impressed with how Amanda was able to swallow pills at the hospital and she did very well with them. However, when I went to the pharmacy last night to pick up her meds I wasn't ready for what they handed me. They didn't have the larger dose of one of her meds that she would have to take twice a day. They smaller dose the pharmacy had would mean 6 pills in the morning and 5 at night daily. For a young girl that is not use to swallowing pills that is a bunch. Amanda has taken it like a champ and doesn't really complain. She is even taking them 2 at a time (the smaller ones.)
Again, thank you for following along on Amanda's battle of leukemia. She knows she is loved very much and it is confirmed everyday by all of our family and friends and again, for that we are indeed grateful.
Thank you.
Monday, May 4, 2009
HOME, HOME, HOME.
The prayers have been answered. After 10 long and painful days in the hospital Amanda's cries have been heard and we were surprised with the news today that she would be discharged later today. Though the journey is only just beginning, the news put a big smile on her face that she would be able to go home and sleep in her own bed. I think she just might miss the room service, the cartoon network, and Xbox. But I know it will pale in comparison to what she won't miss at the hospital, like the constant people barging in to ask questions, listen to her heart, check her blood pressure and oxygen, hook up a Costco sized bag of IV fluid, and the constant beeping from machines by her bed.
We didn't expect to be headed home for a couple more days but the labs all looked really good and the nurses told us she was lined up for discharge later today. The good news even helped ease the pain of the two chemo shots she had to get in her legs at the same time today. It still hurt, but not as much if she didn't know it was getting her closer to going home today.
Mary Ann and I met with the clinic nurse today to go over what the next month will look like for Amanda and the number of time she has to come back down for draws, "back pokes" and chemo. Amanda ended up falling asleep during this part out of being tired and I think part due to not wanting to hear about it. I don't think she fully knows that going home means she will be all better and everything will get back to normal.
For those interested, we will still be limiting visits at home so thank you for your understanding.
She gets to go home. YEAH!!!!!
We didn't expect to be headed home for a couple more days but the labs all looked really good and the nurses told us she was lined up for discharge later today. The good news even helped ease the pain of the two chemo shots she had to get in her legs at the same time today. It still hurt, but not as much if she didn't know it was getting her closer to going home today.
Mary Ann and I met with the clinic nurse today to go over what the next month will look like for Amanda and the number of time she has to come back down for draws, "back pokes" and chemo. Amanda ended up falling asleep during this part out of being tired and I think part due to not wanting to hear about it. I don't think she fully knows that going home means she will be all better and everything will get back to normal.
For those interested, we will still be limiting visits at home so thank you for your understanding.
She gets to go home. YEAH!!!!!
Sunday, May 3, 2009
Day 9 at the Hospital
Today completes day 9 here at Primary Childrens Medical Center.
Each day has its ups and downs. I came in this afternoon to relieve Mary Ann to find a fairly moody and lathargic Amanda. The doctors have warned us of the mood swings and effects of the chemotherapy. During this process Amanda's blood counts are constantly monitored for red blood cell counts, white blood cell counts, and plateletts. Her numbers have looked pretty good but the red blood cells were going down to the point that they decided to give her a blood transfusion today. This is appearantly pretty common.
Amanda couldn't help but fall asleep for a couple of hours tonight. However, when she woke up, she wasn't as pale and seemed to be feeling much better. As parents, we still have a lot of studying from the big binder. Imagine years of higher education medical training wrapped up into a 2" 3 ring binder. All the medical terms and symptoms are wrapped up for our educational purpose. Sometimes just looking at the binder itself is overwhelming.
I probably will overstate this, but just looking into Amanda's eyes when she feels OK makes being at the hospital so much easier. I feel for her every time someone comes in to give her a dose of something, draw blood, or add something to the IV. She is taking it very well with the exception of when there is a needle involved, an injection causes a bad taste in her mouth, or has to see blood. Some of these usually spark an "I want to go home." Being here at the hospital hasn't been easy for her. The cartoons, movies, and Xbox have helped to keep her mind off of how much better it is to be at home.
I admire her strength and endurance through all of this. We continue to pray for her strength to be with her throughout this ordeal. Mainly for selfish reasons, though. Her strength gives us strength.
Each day has its ups and downs. I came in this afternoon to relieve Mary Ann to find a fairly moody and lathargic Amanda. The doctors have warned us of the mood swings and effects of the chemotherapy. During this process Amanda's blood counts are constantly monitored for red blood cell counts, white blood cell counts, and plateletts. Her numbers have looked pretty good but the red blood cells were going down to the point that they decided to give her a blood transfusion today. This is appearantly pretty common.
Amanda couldn't help but fall asleep for a couple of hours tonight. However, when she woke up, she wasn't as pale and seemed to be feeling much better. As parents, we still have a lot of studying from the big binder. Imagine years of higher education medical training wrapped up into a 2" 3 ring binder. All the medical terms and symptoms are wrapped up for our educational purpose. Sometimes just looking at the binder itself is overwhelming.
I probably will overstate this, but just looking into Amanda's eyes when she feels OK makes being at the hospital so much easier. I feel for her every time someone comes in to give her a dose of something, draw blood, or add something to the IV. She is taking it very well with the exception of when there is a needle involved, an injection causes a bad taste in her mouth, or has to see blood. Some of these usually spark an "I want to go home." Being here at the hospital hasn't been easy for her. The cartoons, movies, and Xbox have helped to keep her mind off of how much better it is to be at home.
I admire her strength and endurance through all of this. We continue to pray for her strength to be with her throughout this ordeal. Mainly for selfish reasons, though. Her strength gives us strength.
Saturday, May 2, 2009
The Journey Begins
As a parent, the words "your child has Leukemia" are some of the most fearful and painful words to accept. However, to finally have a diagnosis and treatment plan for our daughter is a terrible, but welcome relief.
Amanda has not been herself for a while. Chronic headaches, fatigue, and changes in her mood caused us concern many months back. She often looked pale and just didn't have that same energetic attitude that we normally can't even keep up with. The day after her baptism the fevers and back pain started. A few doctor's appointments sent us home assuring us it was all viral. But after two months of chronic fevers averaging every other day, we became concerned again. Despite this, doctor's just ran blood tests to pinpoint a viral infection. As a mother, my instincts began to fear something quite serious and I began hounding the doctor's office for help because the fevers got much worse (NEVER second guess your mother's instinct!). We waited for more test results that only told us she wasn't getting better. Finally, an Instacare doctor recognized how ill she was and told us to take her to the emergency room at Primary Children's, something my mothers instinct had already told me.
We have been nothing but impressed with Primary Children's. They immediately suspected cancer, but were smart enough not to scare us. Additionally, the ER doctor's noticed no signs of cancer, but did not rule it out. Five separate tests to detect cancer were negative so she was admitted to try and rule out infectious disease and just about anything else. Five days were spent waiting for tests results and dealing with a very fearful and confused little girl. We lost track of how many times she cried to go home. It was not easy. An oncology doctor finally stepped in to completely rule out cancer since everything else was a dead end. A bone marrow biopsy was done on Thursday, which confirmed Leukemia.
You already have the bad news. She has a condition that only about 2500 kids a year are diagnosed with in the US. We are looking at over two years of treatment (ideally). We are facing a health condition that will forever change our family. And overall we are very scared to watch Amanda go through this challenging process.
The better news: she has Acute Lymphocytic Leukemia (ALL). This is the most common form of Leukemia and the most treatable. In addition to this, we caught it early and it has not spread beyond her bone marrow. The combination of this puts her at an 85% to 95% recovery and long term cure rate. I keep telling the doctor that she seems too hopeful and optimistic. It's hard for us to believe that the treatment is so successful and that the cure rate is so high. But she keeps encouraging us that cancer treatment for this disorder has come a long way and that Amanda is an ideal patient to make a full recovery. We are placing our faith and hope in those that will treat her and are trying to adopt their optimism as it is hard for us to look past the fear. Because her prognosis is so good, she does not require radiation therapy (hopefully that remains the same) and her chemotherapy treatment is not as intense as that of other cancers. She also came in very healthy and is proving to be very resilient. She is adjusting to the diagnosis and learning to accept it as best she can. She also becoming increasingly brave and adjusting to hospital life better.
Amanda began Chemotherapy yesterday. I have to admit, it is not as many intense medications as I feared and the side affects look to be manageable at this point. We are currently in the "intensive treatment phase." This will last for 28 days at which time they will evaluate her progress and determine if she can go on to the next phase of Chemo. So far so good. She is tired and sick. Some hours are tougher than others as she doesn't feel good and is overly tired. But she also is giggling, playing video games, and enjoying the company of others. The good news is that most of her treatments will be outpatient unless she is not doing well. We may be home as early as Tuesday, but plan to make Primary Children's a second home.
We plan to use this blog as a way to communicate to others how she is doing and what her treatment plans are. This will help us to not have to repeat everything that is happening. It will also provide a place for people to offer support to Amanda. The happier she is, the better she will heal. And nothing makes her more happy than knowing that people love her.
Please be aware that as her treatment progress we will become more secluded. Please know that we will do whatever it takes to protect her and help her heal. Please know that there will be times that we must turn good intentions away and turn down offers for help. Although her immune system is reasonably OK now, a single illness means days at the hospital and serious risk to her. We will limit the amount of people around her for several months. For now, she can visit with healthy people, but we plan to use this blog to let people know when an email or blog comment will be much better than a visit.
What we can use are many prayers and all of you to live your life in accordance to good gospel principles. We are hopeful for her, but know that the faith and prayers of others will be both beneficial for her and for you. We are not on this journey alone and cannot do it without support.
Amanda has not been herself for a while. Chronic headaches, fatigue, and changes in her mood caused us concern many months back. She often looked pale and just didn't have that same energetic attitude that we normally can't even keep up with. The day after her baptism the fevers and back pain started. A few doctor's appointments sent us home assuring us it was all viral. But after two months of chronic fevers averaging every other day, we became concerned again. Despite this, doctor's just ran blood tests to pinpoint a viral infection. As a mother, my instincts began to fear something quite serious and I began hounding the doctor's office for help because the fevers got much worse (NEVER second guess your mother's instinct!). We waited for more test results that only told us she wasn't getting better. Finally, an Instacare doctor recognized how ill she was and told us to take her to the emergency room at Primary Children's, something my mothers instinct had already told me.
We have been nothing but impressed with Primary Children's. They immediately suspected cancer, but were smart enough not to scare us. Additionally, the ER doctor's noticed no signs of cancer, but did not rule it out. Five separate tests to detect cancer were negative so she was admitted to try and rule out infectious disease and just about anything else. Five days were spent waiting for tests results and dealing with a very fearful and confused little girl. We lost track of how many times she cried to go home. It was not easy. An oncology doctor finally stepped in to completely rule out cancer since everything else was a dead end. A bone marrow biopsy was done on Thursday, which confirmed Leukemia.
You already have the bad news. She has a condition that only about 2500 kids a year are diagnosed with in the US. We are looking at over two years of treatment (ideally). We are facing a health condition that will forever change our family. And overall we are very scared to watch Amanda go through this challenging process.
The better news: she has Acute Lymphocytic Leukemia (ALL). This is the most common form of Leukemia and the most treatable. In addition to this, we caught it early and it has not spread beyond her bone marrow. The combination of this puts her at an 85% to 95% recovery and long term cure rate. I keep telling the doctor that she seems too hopeful and optimistic. It's hard for us to believe that the treatment is so successful and that the cure rate is so high. But she keeps encouraging us that cancer treatment for this disorder has come a long way and that Amanda is an ideal patient to make a full recovery. We are placing our faith and hope in those that will treat her and are trying to adopt their optimism as it is hard for us to look past the fear. Because her prognosis is so good, she does not require radiation therapy (hopefully that remains the same) and her chemotherapy treatment is not as intense as that of other cancers. She also came in very healthy and is proving to be very resilient. She is adjusting to the diagnosis and learning to accept it as best she can. She also becoming increasingly brave and adjusting to hospital life better.
Amanda began Chemotherapy yesterday. I have to admit, it is not as many intense medications as I feared and the side affects look to be manageable at this point. We are currently in the "intensive treatment phase." This will last for 28 days at which time they will evaluate her progress and determine if she can go on to the next phase of Chemo. So far so good. She is tired and sick. Some hours are tougher than others as she doesn't feel good and is overly tired. But she also is giggling, playing video games, and enjoying the company of others. The good news is that most of her treatments will be outpatient unless she is not doing well. We may be home as early as Tuesday, but plan to make Primary Children's a second home.
We plan to use this blog as a way to communicate to others how she is doing and what her treatment plans are. This will help us to not have to repeat everything that is happening. It will also provide a place for people to offer support to Amanda. The happier she is, the better she will heal. And nothing makes her more happy than knowing that people love her.
Please be aware that as her treatment progress we will become more secluded. Please know that we will do whatever it takes to protect her and help her heal. Please know that there will be times that we must turn good intentions away and turn down offers for help. Although her immune system is reasonably OK now, a single illness means days at the hospital and serious risk to her. We will limit the amount of people around her for several months. For now, she can visit with healthy people, but we plan to use this blog to let people know when an email or blog comment will be much better than a visit.
What we can use are many prayers and all of you to live your life in accordance to good gospel principles. We are hopeful for her, but know that the faith and prayers of others will be both beneficial for her and for you. We are not on this journey alone and cannot do it without support.
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