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!
Saturday, December 22, 2012
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!
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