As we start another new year, I am longing for years gone by. The years when the kids were younger and life seemed much more simple. The years when Aly was a healthy little girl running and biking around the neighborhood with her friends. The years when Tom was still at home all the time.
Today, Tom headed back to school. He's been home for almost a month. It is hard to let him go, again. Tom and I have always been on the same wave length. There have been, probably close to a million times, that we've said the same thing at the same time, or I'll say something and he'll say, "I was just going to say that!" At other times, we can just sit with each other and say nothing. It is hard watching your kids grow up and leave, or not want to spend as much time with you. It is nice when they come home, seemingly more mature and realizing that they've missed being around home and realizing what they are leaving each time the go. I have cherished the hours we have spent together this holiday season.
It is hard to watch Aly continue to struggle with the aftermath of cancer. There are some, actually many, days when I wish she could just somehow take a break from the pills, from the daily hormone shot, from the constant worry that she seems to have. I would give anything for her to have her freedom back. I long for the days where she would go outside, for hours, to play with friends. She continues to struggle to find kids to play with. Somehow, I pray that the kids will figure out how much Aly is hurting. I can't imagine what goes on in her head. Last year, she was like a rock star, with constant attention. Constant companions helping her get through the most difficult time in her life. Now, play dates are like a precious commodity. I don't know what to do for her. I can't help that she's been through a life changer and has become more mature than her peers. I can't change the fact that she is the ultimate caregiver and typically cares more about everyone else than herself. She loves to hang out with adults. Maybe because they understand. Maybe because most adults have been through life changing events. They can relate. When she is around younger kids she doesn't understand why they are so loud and excitable. It's not in her, anymore, to act her age and be a kid. She told me a story, not too long ago, about a kid that was throwing popcorn and she just didn't get it. I said, "well, you should be doing stuff like that too! That's what kids your age do!"
She did have a friend, from the girl's group at school, come over for a few hours today. She worked most of the day, yesterday, and this morning getting things ready for her and this friend to do. She said the friend liked doing crafts, so she took time to organize her craft items. It was so nice to see her excited about something, yet at the same time it made me heavy hearted to know that these visits should not be so few and far between or cause this much excitement. She goes days and sometimes weeks without anyone calling or asking her to play. It breaks my heart. I can't imagine what it is doing to hers.
Aly is going to start counseling this week. I'm not quite sure what that will do for her, other than to have someone to talk to. She doesn't like to talk to Kevin and me about certain things. I don't think it is going to change anything. I'm guessing it is just going to add to the maturity issue as she will be talking , sharing and discussing her thoughts with yet another adult. I still am so surprised that I am struggling to find a cancer group for kids. To me, it seems like it would be so much more helpful to Aly to meet other survivors, her age, that can relate to what she is dealing with. I, personally, feel that she would feel better talking with kids her age. I think it would help her feel more normal, more of a kid again. I've found a few websites for teens, but most of them are for 13 and up. Aly doesn't quite fit there, age wise, anyways. That also isn't face to face. We are still waiting for the yoga classes to start. I'm hoping those will start soon. She is also starting physical therapy this week, to help with the dexterity issues.
We received the bill for her MRI this past week. I seriously don't know what people, without health insurance, do. As I said, we have a large out of pocket deductible to meet, every year. This is the only bill we will see, now, until December comes again. The MRI, which includes the brain and spine, was $13,000. We will only have to pay a portion of that, but we get to see the whole bill as it was the first of the new insurance year and our deductible was not yet met. Well, in one swoop, as I said in the last blog, it is now met. Merry Christmas to us!
I'm sorry I'm not super excited about this new year. I've learned to keep expectations low, so that maybe I will be pleasantly surprised here and there.
I took some of Aly's hair extensions out. The ones on the sides were hanging low, which is a good thing because that means her hair is growing some. But, they just wanted to stick out funny and no amount of styling would calm them. So, we decided they should come out. She's still got some in towards the top of her head where the hair is not growing quickly. Her hair has been another point of contention, but here, again, she doesn't want to spend time fussing with her hair.
The botox treatment is set for Jan. 24th. She has an endocrine appointment in February, physical therapy appointments once a week for the next 6 weeks, counseling will begin if we like the counselor she has a consultation with this week. She also wants to start guitar lessons again and is still swimming with the Sea Devils and yoga is supposed to start this month as well...maybe I shouldn't worry about any free time!
Sunday, January 6, 2013
Saturday, December 22, 2012
Merry Christmas!
The Christmas season has taken over. We have been busy shopping, baking, wrapping and everything else that goes along with Christmas. I took a run to Woodbury, today, to meet a college friend, who lives in Wisconsin. I asked her to use her talents to make something for Tom. She was nice enough to meet me halfway, although she had some Vikings gear to get and said it was hard to come by in Wisconsin! :) Yes, she is one of the few Vikings' fans that is from Wisconsin. Thanks Jane! She is also a teacher and she told me she had a tree decorated, in her classroom, purple and on top, her Viking horns! Awesome! Hopefully, the Vikes will win the next couple of games and continue on to the playoffs.
Anyways, getting back on the Christmas train, we waited until last weekend to get our Christmas tree. Late for us. The weekend we were planning to go, I had called Tom and told him we were going to go. He said, "What? You can't wait a week for me to get home? I thought that was a FAMILY activity." This from the boy who's always complained about going to get our tree. It is our tradition to go and cut a tree down. He has never liked how long it takes me to find the "perfect" tree. We also force him to do the other activities they typically have like the sleigh ride and the place we go usually has a blacksmith working and a spot where you can throw axes at tree stumps. That's always been a highlight for Kevin. Tom liked it the first time when he was quite a bit younger. Not so much anymore. Since we went so late, they were not doing these activities. As a matter of fact, it was also raining, so this year was the quickest search ever. We did take some time to throw a few snowballs and take a couple of pictures. Of course, since it was raining, the pics were a bit blurry. But, memories made nonetheless. It is nice to have Tom back at home for a while.
Well, the week after Aly's MRI, we were supposed to have an appointment with the endocrine doctor. That was two days after the big snow storm. The appointment was to be in Minnetonka, so Aly and I left an hour before the appointment. We live about 3 miles from Hwy 94 and just that short drive took us 15 minutes! It was another 30 minutes to get to Maple Grove. During that drive, there was a sign saying it would be 50 minutes to Hwy 55 which is still about 15 minutes from our final destination. So, at Maple Grove we called it and turned and headed back home. Aly was on time for school and I headed, back to Maple Grove, for work. So, we missed that appointment and January was the next available appointment! We did get lab results. Everything was normal. All hormone levels were good and she is still on track.
Other than that, things continue to be the same. She still has a couple of jaw locks a day. We are going to try the Botox again, a stronger dose, in January. She will also be starting physical therapy to try to help with her dexterity problems. We have signed up to be part of a clinical trial to see how yoga helps recent cancer patients. Even though Aly is a year from treatments, she still qualified for the progam. She is looking forward to that, and I hope she will be meeting other kids she can talk to.
We have met a nice lady, Michelle, whom we found lives nearby. Social media is really helpful sometimes. I had put on the Rally for Aly Facebook page that Aly was being teased about her hair. Michelle got in touch with me, via a friend and she happens to work for a salon that works with people who have hair issues due to illness/treatments. She came and put in some extensions in Aly's hair. On the sides where it is very thin. They are identical, in color, to her hair. It has helped a lot. A couple have come out, but they make her hair look thicker on the sides. Michelle told us the salon she works for has been trying, for years, to get their information into the children's hospitals. The hospitals are under the impression that the salon is trying to drum up more business. They may be, to a point, but she also has very helpful information. I told Aly's cancer doctor about her and she gave me a person to put Michelle in contact with. I hope she will be able to help others. This kind of information would be so helpful. We have struggled to find information on things such as this. It was very helpful to find Michelle and greater that she was close by.
We continue along the path of our new normal. Aly continues to have a couple of appointments every month, but is doing good considering it all. She is a shining star. A strong girl. A mature girl.
We want to wish you all a very merry Christmas and peace, joy and good health in the coming new year!
Anyways, getting back on the Christmas train, we waited until last weekend to get our Christmas tree. Late for us. The weekend we were planning to go, I had called Tom and told him we were going to go. He said, "What? You can't wait a week for me to get home? I thought that was a FAMILY activity." This from the boy who's always complained about going to get our tree. It is our tradition to go and cut a tree down. He has never liked how long it takes me to find the "perfect" tree. We also force him to do the other activities they typically have like the sleigh ride and the place we go usually has a blacksmith working and a spot where you can throw axes at tree stumps. That's always been a highlight for Kevin. Tom liked it the first time when he was quite a bit younger. Not so much anymore. Since we went so late, they were not doing these activities. As a matter of fact, it was also raining, so this year was the quickest search ever. We did take some time to throw a few snowballs and take a couple of pictures. Of course, since it was raining, the pics were a bit blurry. But, memories made nonetheless. It is nice to have Tom back at home for a while.
Well, the week after Aly's MRI, we were supposed to have an appointment with the endocrine doctor. That was two days after the big snow storm. The appointment was to be in Minnetonka, so Aly and I left an hour before the appointment. We live about 3 miles from Hwy 94 and just that short drive took us 15 minutes! It was another 30 minutes to get to Maple Grove. During that drive, there was a sign saying it would be 50 minutes to Hwy 55 which is still about 15 minutes from our final destination. So, at Maple Grove we called it and turned and headed back home. Aly was on time for school and I headed, back to Maple Grove, for work. So, we missed that appointment and January was the next available appointment! We did get lab results. Everything was normal. All hormone levels were good and she is still on track.
Other than that, things continue to be the same. She still has a couple of jaw locks a day. We are going to try the Botox again, a stronger dose, in January. She will also be starting physical therapy to try to help with her dexterity problems. We have signed up to be part of a clinical trial to see how yoga helps recent cancer patients. Even though Aly is a year from treatments, she still qualified for the progam. She is looking forward to that, and I hope she will be meeting other kids she can talk to.
We have met a nice lady, Michelle, whom we found lives nearby. Social media is really helpful sometimes. I had put on the Rally for Aly Facebook page that Aly was being teased about her hair. Michelle got in touch with me, via a friend and she happens to work for a salon that works with people who have hair issues due to illness/treatments. She came and put in some extensions in Aly's hair. On the sides where it is very thin. They are identical, in color, to her hair. It has helped a lot. A couple have come out, but they make her hair look thicker on the sides. Michelle told us the salon she works for has been trying, for years, to get their information into the children's hospitals. The hospitals are under the impression that the salon is trying to drum up more business. They may be, to a point, but she also has very helpful information. I told Aly's cancer doctor about her and she gave me a person to put Michelle in contact with. I hope she will be able to help others. This kind of information would be so helpful. We have struggled to find information on things such as this. It was very helpful to find Michelle and greater that she was close by.
We continue along the path of our new normal. Aly continues to have a couple of appointments every month, but is doing good considering it all. She is a shining star. A strong girl. A mature girl.
We want to wish you all a very merry Christmas and peace, joy and good health in the coming new year!
Tuesday, December 4, 2012
typical doctor day...
First things first...The MRI was CLEAR! Yes! Now we can wait 6 months until the next one! Hooray!
Now, it is 5:15pm and we are just now getting home. We left the house at 9:50am! Yes, long day. I just said to Aly, "I get more exhausted just sitting waiting at the appointments than I do going to work!" I feel worse for Aly. This was a crappy day as far as MRI's go...It was a very reflective kind of day as this clinic is where Aly's first MRI (when they found the tumor) was. Other than the fact that we had awesome results today, it was similar in all other respects...rough going.
We leave the house on time, get to the MRI on time only to have issues. I'm not sure why they say, "arrive at 10:30 for 11:00 MRI." We were there at 10:30, checked in, brought back to the MRI waiting area and the nurse says, "you have about 20 minutes to wait." So, 5 minutes, before the 20 minutes are up, a nurse comes in and says they need to do a urine sample and start an IV as they need to draw blood for lab work and it is also needed for contrast during the MRI. The IV is where it started to go downhill fast...on a toboggan fast. If I were in a court room, I would swear on a bible that this nurse had never stuck a needle in anyone before. She first goes to the typical spot, crease of the arm. She sticks the needle in, VERY slowly mind you, and nothing comes out. She pulls it part way out, pushes back in, repeats this several times while Aly is squirming and squeezing her little monkey friend so hard if he were alive, he would've been strangled. Finally, she says, "yep, this isn't working." I wanted to say, "what was your first clue?" So then she proceeds down the arm towards Aly's wrist. She tries again in this area. It was painful going in. Aly started crying. Again with the in move around, pull back out a little and nothing. Aly is in tears, squeezing her monkey even harder. I wanted to squeeze this woman's neck...still no blood coming out of the arm. So she starts tapping her fingers right above the needle, to which Aly is saying, "it hurts, it hurts." Another nurse came in and asked if this nurse needed help. Why ask? Why not just help? The torturer says, "no, it is just going really slow..." I said, "can we try something else? It should not be this painful, it never has been painful." It took, literally, 10 minutes for them to get enough blood for the lab. I truly am not joking. So, instead of the 11 am start time, it was 11:30. With Aly's MRI's, they scan the brain and spine, so it is typically an hour and a half process. Today, it took 2 hours. I, of course, was worried. Nobody thinks about giving any updates or letting you know why it is taking so long. At exactly the 2 hour mark, Aly and the tech walk in the room. It is now 1:30 and we are supposed to be in Minneapolis to see the doctor at 2pm. The MRI was in Minnetonka! I was planning that we would have about 1 1/2 hour down time in between IF they kept to schedule. So much for that idea! I'm not exactly sure why I worried about getting there on time. We drove through McDonald's, ate in the car and arrived at Children's at 2pm on the dot. Aly's name was not called until 2:20, at which point we were escorted back to the room and sat and waited until 3pm. Seeing Dr. Bendel is worth the wait, but that wait time just seems so very long. Dr. Bendel is very thorough, very nice, very helpful. I came loaded with questions that pile up during the months in between visits. I got lots of information today of which now I have to do more research, more appointments, etc., but at least I feel like I have a starting point for some things.
Aly's labs were pretty normal. Her white blood counts were a bit low. Typically this means your body is fighting something. Aly has had a cold on an off for the past couple of months. Dr. Bendel said it may just be that her immune system is still recovering from treatment and that she has to be exposed, once again, to illnesses in order for the immune system to "catch up" and get stronger.
We also met a social worker, who we were directed to, for some other questions. I told Dr. Bendel that we've been at a loss, for many questions, that have come up post treatment. Things like physical therapy, hair issues, psycho-therapy and so much more. I told her I don't ever know who to ask and we've felt like we've been walking in circles. She was helpful and said anytime we have an issue and don't know who to contact, call her and she will help us find an answer. She said she could work with the school, work to help find answers...why weren't we told this before? It seems to me if you personally don't ask questions, the answers aren't offered. It is like the person who complains loudest gets what they want. I think that the health care system could really use guides for people who are going through a life crisis such as cancer. It would save money on both ends.
I also told Dr. Bendel that we happened to meet a stylist, who lives near us, who works with people who have hair loss due to health issues. The stylist told us that they have been trying, for years, to get their information into hospitals, but the hospitals have not allowed them to do that because the hospitals think they are just trying to make money. In actuality this salon wants to help people. The stylist told us about a shampoo that helps hair grow faster. She is going to visit us, again, and bring some clip in hair extensions for Aly to try and a sample of the shampoo. But, wouldn't it be nice to be given this information during or soon after treatment? Do they not know how much patients (especially girls) could benefit from things such as this? As I've said before, it just seems like, ok, you're done with treatment and you are cancer free, we are done with our job so you are on your own now....what about the after affects? So many little things would greatly improve a patient's experience....
We are now on the path of finding an occupational therapist to help with Aly's weakness and dexterity issues. We are also looking for counseling. I'm on the right track for that, but have been waiting for our insurance deductible to be met, otherwise it is 100% out of pocket for each visit. It's like a bad Christmas present every year as our insurance renews on December 1st, meaning the out of pocket deductible starts over. Today's visit, between the MRI and the clinic, will probably take us over the deductible in one swoop. Then we get to start saving until next December...Amazing....
Sorry, I'm getting long winded! Too much time to think today! Thanks for tuning in and thank you for the prayers and positive thoughts today!
Now, it is 5:15pm and we are just now getting home. We left the house at 9:50am! Yes, long day. I just said to Aly, "I get more exhausted just sitting waiting at the appointments than I do going to work!" I feel worse for Aly. This was a crappy day as far as MRI's go...It was a very reflective kind of day as this clinic is where Aly's first MRI (when they found the tumor) was. Other than the fact that we had awesome results today, it was similar in all other respects...rough going.
We leave the house on time, get to the MRI on time only to have issues. I'm not sure why they say, "arrive at 10:30 for 11:00 MRI." We were there at 10:30, checked in, brought back to the MRI waiting area and the nurse says, "you have about 20 minutes to wait." So, 5 minutes, before the 20 minutes are up, a nurse comes in and says they need to do a urine sample and start an IV as they need to draw blood for lab work and it is also needed for contrast during the MRI. The IV is where it started to go downhill fast...on a toboggan fast. If I were in a court room, I would swear on a bible that this nurse had never stuck a needle in anyone before. She first goes to the typical spot, crease of the arm. She sticks the needle in, VERY slowly mind you, and nothing comes out. She pulls it part way out, pushes back in, repeats this several times while Aly is squirming and squeezing her little monkey friend so hard if he were alive, he would've been strangled. Finally, she says, "yep, this isn't working." I wanted to say, "what was your first clue?" So then she proceeds down the arm towards Aly's wrist. She tries again in this area. It was painful going in. Aly started crying. Again with the in move around, pull back out a little and nothing. Aly is in tears, squeezing her monkey even harder. I wanted to squeeze this woman's neck...still no blood coming out of the arm. So she starts tapping her fingers right above the needle, to which Aly is saying, "it hurts, it hurts." Another nurse came in and asked if this nurse needed help. Why ask? Why not just help? The torturer says, "no, it is just going really slow..." I said, "can we try something else? It should not be this painful, it never has been painful." It took, literally, 10 minutes for them to get enough blood for the lab. I truly am not joking. So, instead of the 11 am start time, it was 11:30. With Aly's MRI's, they scan the brain and spine, so it is typically an hour and a half process. Today, it took 2 hours. I, of course, was worried. Nobody thinks about giving any updates or letting you know why it is taking so long. At exactly the 2 hour mark, Aly and the tech walk in the room. It is now 1:30 and we are supposed to be in Minneapolis to see the doctor at 2pm. The MRI was in Minnetonka! I was planning that we would have about 1 1/2 hour down time in between IF they kept to schedule. So much for that idea! I'm not exactly sure why I worried about getting there on time. We drove through McDonald's, ate in the car and arrived at Children's at 2pm on the dot. Aly's name was not called until 2:20, at which point we were escorted back to the room and sat and waited until 3pm. Seeing Dr. Bendel is worth the wait, but that wait time just seems so very long. Dr. Bendel is very thorough, very nice, very helpful. I came loaded with questions that pile up during the months in between visits. I got lots of information today of which now I have to do more research, more appointments, etc., but at least I feel like I have a starting point for some things.
Aly's labs were pretty normal. Her white blood counts were a bit low. Typically this means your body is fighting something. Aly has had a cold on an off for the past couple of months. Dr. Bendel said it may just be that her immune system is still recovering from treatment and that she has to be exposed, once again, to illnesses in order for the immune system to "catch up" and get stronger.
We also met a social worker, who we were directed to, for some other questions. I told Dr. Bendel that we've been at a loss, for many questions, that have come up post treatment. Things like physical therapy, hair issues, psycho-therapy and so much more. I told her I don't ever know who to ask and we've felt like we've been walking in circles. She was helpful and said anytime we have an issue and don't know who to contact, call her and she will help us find an answer. She said she could work with the school, work to help find answers...why weren't we told this before? It seems to me if you personally don't ask questions, the answers aren't offered. It is like the person who complains loudest gets what they want. I think that the health care system could really use guides for people who are going through a life crisis such as cancer. It would save money on both ends.
I also told Dr. Bendel that we happened to meet a stylist, who lives near us, who works with people who have hair loss due to health issues. The stylist told us that they have been trying, for years, to get their information into hospitals, but the hospitals have not allowed them to do that because the hospitals think they are just trying to make money. In actuality this salon wants to help people. The stylist told us about a shampoo that helps hair grow faster. She is going to visit us, again, and bring some clip in hair extensions for Aly to try and a sample of the shampoo. But, wouldn't it be nice to be given this information during or soon after treatment? Do they not know how much patients (especially girls) could benefit from things such as this? As I've said before, it just seems like, ok, you're done with treatment and you are cancer free, we are done with our job so you are on your own now....what about the after affects? So many little things would greatly improve a patient's experience....
We are now on the path of finding an occupational therapist to help with Aly's weakness and dexterity issues. We are also looking for counseling. I'm on the right track for that, but have been waiting for our insurance deductible to be met, otherwise it is 100% out of pocket for each visit. It's like a bad Christmas present every year as our insurance renews on December 1st, meaning the out of pocket deductible starts over. Today's visit, between the MRI and the clinic, will probably take us over the deductible in one swoop. Then we get to start saving until next December...Amazing....
Sorry, I'm getting long winded! Too much time to think today! Thanks for tuning in and thank you for the prayers and positive thoughts today!
Sunday, December 2, 2012
MRI Time
Tuesday is the day for Aly's MRI appointment. Please send prayers that it will be clear once again. If this one is clear, she will only need to do 2 next year! Even though I called about 6 weeks ago for the MRI appointment, they could not fit us in at Children's where her cancer doctor is. We have to go to Minnetonka for the MRI and then drive to Minneapolis to see her doctor. Joy!
Health wise, things have been pretty normal as they go for Aly. She had what seemed to be a long term cold, but that seems to finally be gone. She has had some trouble falling asleep this week and also had a couple of days where she felt hot all day. We thought it was her thyroid and maybe her medication needed to be adjusted. A blood test was done, and everything is normal there, so we'll have to see if her blood tests on Tuesday show anything. Some of the tests take 5 days to get back, and we haven't gotten all the results from the blood they drew last Wednesday either. It could be other things on her mind too. She had a bit of a stressful week. She had a couple of comments about what her hair looked like. Not good comments. I'm guessing that is on her mind. Kevin and I both suggested that she needs to stand up for herself and let the person/people know that she's been through cancer. The day after the 2nd comment came, she wanted to wear a hat to school. I let her do that, thinking it was ok, although they have a no hat rule at school, they do make exceptions for certain issues. Her school counselor chatted with her that day, and brought up a good point. Something I didn't think of. If she starts wearing her hat again (she was wearing it when she had no hair and was sick), people might start rumors that maybe she is sick again. That would not be good either, so the hat came off.
She got a haircut a couple of weeks ago and it looked really cute when the stylist styled it. It is the typical thing that women have an issue with. The cut looks so cute, but then when you try to duplicate the style at home it is not easy! I've been trying to help her out in the mornings, but I'm no stylist either. She's got a good amount of hair in most places, but the sides are very wispy and along her surgery scar it is rather thin.
The day of the bad comment, she came home and sat by me until I got off the phone. I knew something was bothering her because she will typically start her homework right away, but she sat and waited for me. The first thing she said was, "Mom, I'm thinking I want to get hair extensions." I was wondering where this was coming from. We had talked about extensions awhile back but it really isn't feasible when she is swimming 3 times a week and the cost is outrageous. I asked her what was up and she told me she overheard the comment. This on top of her loving (sarcastic) brother commenting while he was home for Thanksgiving, put her over the edge. Yes, I certainly had a chat with her brother...but Aly did not know the girl that made the comment at school.
There is always something going on here. Never a dull moment. Aly had Friday off. I worked for a little while in the morning and got off early. The sweet girl had cleaned her room, emptied all the garbage cans, straightened up our living space, made my bed, done the dishes and she says, "I was going to clean your bathroom, but I ran out of time!" I hadn't even asked her to do ANY of this! She says, "I've been waiting for someone to do these things, but I figured I'd have to do them myself." ( I think I've said that myself before!) I was so thrilled that she'd take the time to do all this! I told her she was wonderful! She will spend hours in her room, "organizing". Love that girl!
Anyways, Friday afternoon I had to get on the phone, my typical afternoon activity, because we hadn't heard lab results. I had asked if we should get her in right away or wait until MRI day because they have to do labs too. I had called on Tuesday to set up the appointment and the nurse had said, "oh yeah, if she's not sleeping you'll want to get her in right away. We want her to feel good! The results will be back the same day for the thyroid check." So, I got an appointment for Wednesday morning. So much for "right away." No one called, no follow up. Friday rolls around and still no call. It seems it is not THAT important that Aly feels good??? All up to me I guess, the follow up queen! :) It took 2 phone calls, which I sat on hold for both. Then 2 more phone calls, from the nurse's end, before we found out things were normal. I swear, it is unbelievable! Aly was sitting with me, listening. She gets it, she is so sympathetic, such the caregiver. She finds it outrageous too. She is still having trouble falling asleep. I'm adding that to the list of questions for the doctor appointment Tuesday. I currently have 8 questions on my list. Fun, fun! Even after all this, I still feel like we don't know everything about Aly's condition. I am going to have to do more homework in regards to her endocrine (no pituitary function) issues.
One day at a time...one day at a time!
Health wise, things have been pretty normal as they go for Aly. She had what seemed to be a long term cold, but that seems to finally be gone. She has had some trouble falling asleep this week and also had a couple of days where she felt hot all day. We thought it was her thyroid and maybe her medication needed to be adjusted. A blood test was done, and everything is normal there, so we'll have to see if her blood tests on Tuesday show anything. Some of the tests take 5 days to get back, and we haven't gotten all the results from the blood they drew last Wednesday either. It could be other things on her mind too. She had a bit of a stressful week. She had a couple of comments about what her hair looked like. Not good comments. I'm guessing that is on her mind. Kevin and I both suggested that she needs to stand up for herself and let the person/people know that she's been through cancer. The day after the 2nd comment came, she wanted to wear a hat to school. I let her do that, thinking it was ok, although they have a no hat rule at school, they do make exceptions for certain issues. Her school counselor chatted with her that day, and brought up a good point. Something I didn't think of. If she starts wearing her hat again (she was wearing it when she had no hair and was sick), people might start rumors that maybe she is sick again. That would not be good either, so the hat came off.
She got a haircut a couple of weeks ago and it looked really cute when the stylist styled it. It is the typical thing that women have an issue with. The cut looks so cute, but then when you try to duplicate the style at home it is not easy! I've been trying to help her out in the mornings, but I'm no stylist either. She's got a good amount of hair in most places, but the sides are very wispy and along her surgery scar it is rather thin.
The day of the bad comment, she came home and sat by me until I got off the phone. I knew something was bothering her because she will typically start her homework right away, but she sat and waited for me. The first thing she said was, "Mom, I'm thinking I want to get hair extensions." I was wondering where this was coming from. We had talked about extensions awhile back but it really isn't feasible when she is swimming 3 times a week and the cost is outrageous. I asked her what was up and she told me she overheard the comment. This on top of her loving (sarcastic) brother commenting while he was home for Thanksgiving, put her over the edge. Yes, I certainly had a chat with her brother...but Aly did not know the girl that made the comment at school.
There is always something going on here. Never a dull moment. Aly had Friday off. I worked for a little while in the morning and got off early. The sweet girl had cleaned her room, emptied all the garbage cans, straightened up our living space, made my bed, done the dishes and she says, "I was going to clean your bathroom, but I ran out of time!" I hadn't even asked her to do ANY of this! She says, "I've been waiting for someone to do these things, but I figured I'd have to do them myself." ( I think I've said that myself before!) I was so thrilled that she'd take the time to do all this! I told her she was wonderful! She will spend hours in her room, "organizing". Love that girl!
Anyways, Friday afternoon I had to get on the phone, my typical afternoon activity, because we hadn't heard lab results. I had asked if we should get her in right away or wait until MRI day because they have to do labs too. I had called on Tuesday to set up the appointment and the nurse had said, "oh yeah, if she's not sleeping you'll want to get her in right away. We want her to feel good! The results will be back the same day for the thyroid check." So, I got an appointment for Wednesday morning. So much for "right away." No one called, no follow up. Friday rolls around and still no call. It seems it is not THAT important that Aly feels good??? All up to me I guess, the follow up queen! :) It took 2 phone calls, which I sat on hold for both. Then 2 more phone calls, from the nurse's end, before we found out things were normal. I swear, it is unbelievable! Aly was sitting with me, listening. She gets it, she is so sympathetic, such the caregiver. She finds it outrageous too. She is still having trouble falling asleep. I'm adding that to the list of questions for the doctor appointment Tuesday. I currently have 8 questions on my list. Fun, fun! Even after all this, I still feel like we don't know everything about Aly's condition. I am going to have to do more homework in regards to her endocrine (no pituitary function) issues.
One day at a time...one day at a time!
Sunday, November 18, 2012
Friday, November 16, 2012
Celebrations
November is a busy month of celebrations. It seems a lot of family members and friends have birthdays. We also, of course, have Thanksgiving and we have added a new celebration. Last November 17th, Alyona had her first MRI after completing cancer treatments. It was the first clear MRI and she was deemed by doctors to be cancer free. So, we've added a special anniversary date to our calendar. Aly was surprised that I remember the actual date. Well, honestly it is not hard to forget considering it came the day after my birthday, but it is also because it was a blessing to hear the words that there was no cancer to be found. It ranks up there with other life changing events. It was a life changing event! It meant the road back to some normalcy for all of us.
I tried to come up with something special to celebrate this date. I found a couple of cute survivor items that I ordered for her. I was so upset that the t-shirt I ordered came, today, and it was way too small! I ordered a size larger than what Aly normally wears and this one looks like it is 2 sizes smaller! So, I'll have to exchange it. I'm disappointed. I know Aly, the understanding heart, will say, "oh, that's ok," but it will bug me! It also bugs me that the other item won't arrive until Monday! One of these days I will learn to plan better and do things further ahead so I don't run into this situation. We'll have to do something fun tomorrow. She is also planning to have a new friend over to play. Aly has been part of a girl's group at school. The girls work on social interactions. This new friend is also in the group with Aly. I'm hoping a nice friendship will grow from it.
Today, was my birthday. It was a good day. Aly took extra steps to make sure I was happy. She is so giving and tries so hard to please. She called Kevin to tell him to pick up birthday napkins. She also texted Tom to remind him it was my birthday, but he remembered on his own. She texted a couple of others I had not heard from and hinted that it was the 16th. Too funny. I also learned that when she and I went to our favorite antique shop, she bought me something on the sly. I had gone upstairs and she said she was going to stay downstairs and buy a sucker. She did buy a sucker but she also bought a Mickey Mouse watch for me. I didn't even know! I was blessed with all the greetings and well wishes I received today. Kevin and Aly took me out for dinner and to a new cupcake store in Maple Grove. Kevin brought home a headband that had a large cupcake with a candle on top. I was instructed that I had to wear it to dinner. That was embarrassing, but Aly enjoyed it, so I went with it. Many eyes followed me as I walked though the restaurant. One person actually said,"Happy Birthday!". As we sat down, Aly said, "Did you see all those eyes following you? That is what it is like when I use my cane or when you are bald." It is so hard to hear these types of things. Oh, I'm well aware of those eyes staring at Aly. I see them all the time. I constantly bit my tongue for fear of saying,"what are you looking at?" It amazes me, in this day and age that there is still a stigma attached to people who look different or have disabilities. Like everything else, I hope that this only makes Aly stronger and makes her even more of an advocate for others. She is such a caring individual, constantly thinking about others, wanting them to be happy, wanting to help and take care of others. She is a true gift...
Aly continues to have the jaw locks, but they are now only happening when she eats. She hasn't had any, recently, during swim practice or flute practicing. So, maybe the Botox helped in some way but not totally? Maybe there were 2 spots acting up and it helped one but not the other? Or maybe they will somehow go away the same way they came. She also said she didn't have any while she was away on the three day school field trip, but then had them again upon returning home. Maybe it is less stress that makes them go away? I don't get it. The doctor suggested we wait a couple of months and try the Botox again at a higher dosage. It'd be nice if they just disappeared. Keep hoping and praying....
I tried to come up with something special to celebrate this date. I found a couple of cute survivor items that I ordered for her. I was so upset that the t-shirt I ordered came, today, and it was way too small! I ordered a size larger than what Aly normally wears and this one looks like it is 2 sizes smaller! So, I'll have to exchange it. I'm disappointed. I know Aly, the understanding heart, will say, "oh, that's ok," but it will bug me! It also bugs me that the other item won't arrive until Monday! One of these days I will learn to plan better and do things further ahead so I don't run into this situation. We'll have to do something fun tomorrow. She is also planning to have a new friend over to play. Aly has been part of a girl's group at school. The girls work on social interactions. This new friend is also in the group with Aly. I'm hoping a nice friendship will grow from it.
Today, was my birthday. It was a good day. Aly took extra steps to make sure I was happy. She is so giving and tries so hard to please. She called Kevin to tell him to pick up birthday napkins. She also texted Tom to remind him it was my birthday, but he remembered on his own. She texted a couple of others I had not heard from and hinted that it was the 16th. Too funny. I also learned that when she and I went to our favorite antique shop, she bought me something on the sly. I had gone upstairs and she said she was going to stay downstairs and buy a sucker. She did buy a sucker but she also bought a Mickey Mouse watch for me. I didn't even know! I was blessed with all the greetings and well wishes I received today. Kevin and Aly took me out for dinner and to a new cupcake store in Maple Grove. Kevin brought home a headband that had a large cupcake with a candle on top. I was instructed that I had to wear it to dinner. That was embarrassing, but Aly enjoyed it, so I went with it. Many eyes followed me as I walked though the restaurant. One person actually said,"Happy Birthday!". As we sat down, Aly said, "Did you see all those eyes following you? That is what it is like when I use my cane or when you are bald." It is so hard to hear these types of things. Oh, I'm well aware of those eyes staring at Aly. I see them all the time. I constantly bit my tongue for fear of saying,"what are you looking at?" It amazes me, in this day and age that there is still a stigma attached to people who look different or have disabilities. Like everything else, I hope that this only makes Aly stronger and makes her even more of an advocate for others. She is such a caring individual, constantly thinking about others, wanting them to be happy, wanting to help and take care of others. She is a true gift...
Aly continues to have the jaw locks, but they are now only happening when she eats. She hasn't had any, recently, during swim practice or flute practicing. So, maybe the Botox helped in some way but not totally? Maybe there were 2 spots acting up and it helped one but not the other? Or maybe they will somehow go away the same way they came. She also said she didn't have any while she was away on the three day school field trip, but then had them again upon returning home. Maybe it is less stress that makes them go away? I don't get it. The doctor suggested we wait a couple of months and try the Botox again at a higher dosage. It'd be nice if they just disappeared. Keep hoping and praying....
Wednesday, November 7, 2012
November...ALREADY??
Wow, well...as usual I'm struggling to find time to get on my blog. Seems like I'm at work, coming home and getting on the phone, then it is dinner prep, then evening activities! Everyday, I feel like I am still making calls in regards to something about Aly. Doctors, school, whatever it is, one call typically turns into 2 or 3. Never an easy answer, never an immediate yes. I wonder if this is what it will be like always, or if at some point some things will change???
Today, Aly headed on a 3 day school field trip to Long Lake Conservation Center. Tom had the same trip when he was in 6th grade. It must be a good one or I don't think they'd continue to do it. I'm worried that Aly will be ok out in the woods. I wish I didn't have to worry, but one thing could lead to another and yep, I just worry. They return on Friday afternoon. At least winter has held off for these days. It is supposed to be in the 50's for the next couple of days and Saturday may be even warmer, but I just heard that thunderstorms are coming Saturday which may turn our weather to snow on Sunday. Just gotta love Minnesota and the roller coaster weather.
I will admit I am taking full advantage of being kid free for the next couple of days. I'm getting caught up on Jayne time. Today, it was a mammogram and haircut. Tomorrow, maybe some shopping or something fun. Tonight, it is dinner out with my hubby.
Next week, on the 17th, will be the anniversary of Aly's first CLEAR MRI and the lumber puncture which showed no cancer in her system! I'll have to come up with something special I think! I just scheduled Aly's next MRI for December 4th. If this is clear, she will only have to go through 2 MRI's next year! Maybe that will help slow a few things down!
The jaw locks continue. Aly is still having several everyday, although she did not have any during her last swim practice on Monday. So, maybe the Botox is working to a certain degree, but not totally. The doctor's suggestion is to wait a couple of months and then try again with a stronger dose. I am still waiting to hear the opinion of the neurologist. She is the one who suggested the Botox. We'll wait and make a decision until then. We also got the neuro. pscyh. report we've been waiting for since the end of July. We were expecting pretty normal results as the doctor said about that much as we were leaving the appointment, but one interesting thing did come out of it. The treatments have caused dexterity issues. Aly's finger dexterity has been "significantly impaired." I'm not sure why this is or what part of the treatment would cause this, or if the tumor itself was the cause and like everything else, I'm not sure I'd get an answer from anyone. It is just another issue to tackle. The doctor suggested we include that in Aly's education plan, so she is not marked down, in grades, for slowness. She said it would affect things such as typing skills and playing an instrument. Aly plays the flute. She actually has been struggling a bit, especially on faster songs. It has been a point of frustration for her, and to have an actual reason why is actually a relief in a way. I told Aly about this finding and she was actually happy to hear it. She knows, now, that there is a reason for the struggle but at the same time, it is something else that she has to put extra effort and practice into if she wants to continue.
I just keep praying that somehow things will get easier for her....
Today, Aly headed on a 3 day school field trip to Long Lake Conservation Center. Tom had the same trip when he was in 6th grade. It must be a good one or I don't think they'd continue to do it. I'm worried that Aly will be ok out in the woods. I wish I didn't have to worry, but one thing could lead to another and yep, I just worry. They return on Friday afternoon. At least winter has held off for these days. It is supposed to be in the 50's for the next couple of days and Saturday may be even warmer, but I just heard that thunderstorms are coming Saturday which may turn our weather to snow on Sunday. Just gotta love Minnesota and the roller coaster weather.
I will admit I am taking full advantage of being kid free for the next couple of days. I'm getting caught up on Jayne time. Today, it was a mammogram and haircut. Tomorrow, maybe some shopping or something fun. Tonight, it is dinner out with my hubby.
Next week, on the 17th, will be the anniversary of Aly's first CLEAR MRI and the lumber puncture which showed no cancer in her system! I'll have to come up with something special I think! I just scheduled Aly's next MRI for December 4th. If this is clear, she will only have to go through 2 MRI's next year! Maybe that will help slow a few things down!
The jaw locks continue. Aly is still having several everyday, although she did not have any during her last swim practice on Monday. So, maybe the Botox is working to a certain degree, but not totally. The doctor's suggestion is to wait a couple of months and then try again with a stronger dose. I am still waiting to hear the opinion of the neurologist. She is the one who suggested the Botox. We'll wait and make a decision until then. We also got the neuro. pscyh. report we've been waiting for since the end of July. We were expecting pretty normal results as the doctor said about that much as we were leaving the appointment, but one interesting thing did come out of it. The treatments have caused dexterity issues. Aly's finger dexterity has been "significantly impaired." I'm not sure why this is or what part of the treatment would cause this, or if the tumor itself was the cause and like everything else, I'm not sure I'd get an answer from anyone. It is just another issue to tackle. The doctor suggested we include that in Aly's education plan, so she is not marked down, in grades, for slowness. She said it would affect things such as typing skills and playing an instrument. Aly plays the flute. She actually has been struggling a bit, especially on faster songs. It has been a point of frustration for her, and to have an actual reason why is actually a relief in a way. I told Aly about this finding and she was actually happy to hear it. She knows, now, that there is a reason for the struggle but at the same time, it is something else that she has to put extra effort and practice into if she wants to continue.
I just keep praying that somehow things will get easier for her....
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