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!
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....
Sunday, October 28, 2012
jaw locks
Well, the doctor said it would take 3-5 days for the botox to start working. On day 4, Aly went through the day without a single jaw lock. She was thrilled. She had activity night at school so she didn't have a chance to tell Kevin the news before she left for that. She told me to, "make sure you tell Dad I didn't have ANY jaw locks today. I even ate one of those caramels and it didn't do anything." She said she hadn't felt anything in the jaw area. Usually she gets a tight feeling or it just locks, but this day nothing!
However, yesterday she had a jaw lock and just the one. I was doing some cleaning and Aly came in and said, "Mom, my jaw just locked." Oh, you could read the disappointment all over her face. She was ready to cry. I didn't really say anything as I was right in the middle of my cleaning project. I should've stopped and said something or give her a hug. She left the room for a little while. Then she came back and sat on our bed. Kevin was in the room and I was in the adjoining bathroom, still cleaning. I heard Kevin ask her why she looked so upset. She started to explain how she "went through the botox for nothing." Kevin and I both said she has seen improvements and I reminded her that it was day 5 and the doctor said 3-5 days. I encouraged her and said that even an improvement, being less jaw locks, should be worth it. I hope this works. I hope she has more days like she did on Friday, with NO jaw locks. Sometimes I feel like I am giving false hope, or trying to convince myself that these things will work. I hate these disappointments as much as Aly does. I wish a long string of positives would start happening for her!
However, yesterday she had a jaw lock and just the one. I was doing some cleaning and Aly came in and said, "Mom, my jaw just locked." Oh, you could read the disappointment all over her face. She was ready to cry. I didn't really say anything as I was right in the middle of my cleaning project. I should've stopped and said something or give her a hug. She left the room for a little while. Then she came back and sat on our bed. Kevin was in the room and I was in the adjoining bathroom, still cleaning. I heard Kevin ask her why she looked so upset. She started to explain how she "went through the botox for nothing." Kevin and I both said she has seen improvements and I reminded her that it was day 5 and the doctor said 3-5 days. I encouraged her and said that even an improvement, being less jaw locks, should be worth it. I hope this works. I hope she has more days like she did on Friday, with NO jaw locks. Sometimes I feel like I am giving false hope, or trying to convince myself that these things will work. I hate these disappointments as much as Aly does. I wish a long string of positives would start happening for her!
Monday, October 22, 2012
It's almost November!
Time continues to fly and I heard something about possible snow this weekend in the forecast! Yes, that nasty 4 letter word! At least it is nasty to me. I think there should be NO snow allowed before my birthday!
Anyways, one year ago, Aly was just completing radiation treatments in Florida. She was done on October 25th of last year and she was looking forward to being home, just in time for Halloween! So, we are just about to the one year mark of being cancer free! We are blessed that the cancer treatments are becoming more and more a distant memory. We can only continue to pray that the cancer is gone forever and we will never have to experience that again. We will continue to pray for a cancer cure and for better treatment options in the future.
Today, Aly and I ventured to Children's to have them do botox injections into her jaw muscles. She continues to have jaw locks and this may be something that will help. I was under the impression that it could get rid of them all together, for good. After seeing the doctor today, it sounds like it may only be a temporary fix, IF it works. He told us that they are typically done about every 3 months! I'm not sure I like that option. I guess we will have to wait and see if it does work and then figure out what to do. He told us that it typically takes 3-5 days to show proof. I was already optimistic as Aly said her jaw did not lock during lunch or dinner. Only later, did she tell me that she had a caramel which produced a lock. Now, she just returned home from swimming and said it locked during swim practice as well. So, I guess we need some patience. Please let this help her and relieve this annoying affect. We still don't know what is causing it and that is the most frustrating to me. No one will say, it is from the radiation or it is from her brain surgery. No one knows why it happens some times and not others. I still don't understand why everything to do with Aly seems to be such a mystery! I know that she NEVER experienced these before treatments and that they started during the last week of radiation treatment. Nobody wants to take claim. Kind of like certain politicians! (rim shot please...)
Even with it all, Aly continues on the path of being as normal as possible. She went to a friend's for a birthday party sleepover on Friday. She had a swim meet on Saturday and Sunday. The 6th graders are getting ready for a 3 day field trip to Long Lake Conservation Center on November 7th and, recently added, an overnight field trip for student council members on Nov. 1! The council will attend a leadership conference in Alexandria. She is excited and looking forward to both trips!
I will forever wish that there was more we can/could of do(ne) to help with her vision. Her vision loss has seemed to have taken the most away from her. I watch her become more isolated because she can't be as active as she once was. I know it affects her friendships as she is now unable to do many things her friends want to do. They don't come around as much anymore. Aly seems to have to initiate calling or going to doors to ask someone to play. It hurts me to have her tell me she's going out to play and ask what time she should be home...only to return 5 minutes later when no one is able to play. I watched, at the swim meet, as a girl waved at Aly and Aly didn't respond. I asked, "did you see______waving at you?" Her response was, "no." I hope that kids don't think she is standoffish or ignoring their hellos and waves. I almost feel like she needs to wear a t-shirt that says, "you may think I can see you, but I can't" or something like that. Aly functions incredibly well with the lack of vision she has. To look at her and watch her you'd never know. I just want to know, how to put the word out so others know she's not trying to ignore, she just doesn't see. You can be standing next to her waving your arms up and down and she can't see you. She frequently walks right past people because she has no peripheral vision. This summer, she was teased, by Tom, because she ran into the dining table one day. So, I taped up a pair of Aly's swim goggles, to mimic her vision as described to me by the doctor and by Aly. I made Tom wear them for a little while. It is not quite the same, as we can turn our eyes to compensate, but it is still pretty dramatic to put those goggles on. If anyone wants to borrow them, I'd be glad to share! It just pulls at my heart, all the time. I don't know what else I can do. Moms just want their kids to be happy and it is REALLY hard when they aren't!
That's all for now....
Anyways, one year ago, Aly was just completing radiation treatments in Florida. She was done on October 25th of last year and she was looking forward to being home, just in time for Halloween! So, we are just about to the one year mark of being cancer free! We are blessed that the cancer treatments are becoming more and more a distant memory. We can only continue to pray that the cancer is gone forever and we will never have to experience that again. We will continue to pray for a cancer cure and for better treatment options in the future.
Today, Aly and I ventured to Children's to have them do botox injections into her jaw muscles. She continues to have jaw locks and this may be something that will help. I was under the impression that it could get rid of them all together, for good. After seeing the doctor today, it sounds like it may only be a temporary fix, IF it works. He told us that they are typically done about every 3 months! I'm not sure I like that option. I guess we will have to wait and see if it does work and then figure out what to do. He told us that it typically takes 3-5 days to show proof. I was already optimistic as Aly said her jaw did not lock during lunch or dinner. Only later, did she tell me that she had a caramel which produced a lock. Now, she just returned home from swimming and said it locked during swim practice as well. So, I guess we need some patience. Please let this help her and relieve this annoying affect. We still don't know what is causing it and that is the most frustrating to me. No one will say, it is from the radiation or it is from her brain surgery. No one knows why it happens some times and not others. I still don't understand why everything to do with Aly seems to be such a mystery! I know that she NEVER experienced these before treatments and that they started during the last week of radiation treatment. Nobody wants to take claim. Kind of like certain politicians! (rim shot please...)
Even with it all, Aly continues on the path of being as normal as possible. She went to a friend's for a birthday party sleepover on Friday. She had a swim meet on Saturday and Sunday. The 6th graders are getting ready for a 3 day field trip to Long Lake Conservation Center on November 7th and, recently added, an overnight field trip for student council members on Nov. 1! The council will attend a leadership conference in Alexandria. She is excited and looking forward to both trips!
I will forever wish that there was more we can/could of do(ne) to help with her vision. Her vision loss has seemed to have taken the most away from her. I watch her become more isolated because she can't be as active as she once was. I know it affects her friendships as she is now unable to do many things her friends want to do. They don't come around as much anymore. Aly seems to have to initiate calling or going to doors to ask someone to play. It hurts me to have her tell me she's going out to play and ask what time she should be home...only to return 5 minutes later when no one is able to play. I watched, at the swim meet, as a girl waved at Aly and Aly didn't respond. I asked, "did you see______waving at you?" Her response was, "no." I hope that kids don't think she is standoffish or ignoring their hellos and waves. I almost feel like she needs to wear a t-shirt that says, "you may think I can see you, but I can't" or something like that. Aly functions incredibly well with the lack of vision she has. To look at her and watch her you'd never know. I just want to know, how to put the word out so others know she's not trying to ignore, she just doesn't see. You can be standing next to her waving your arms up and down and she can't see you. She frequently walks right past people because she has no peripheral vision. This summer, she was teased, by Tom, because she ran into the dining table one day. So, I taped up a pair of Aly's swim goggles, to mimic her vision as described to me by the doctor and by Aly. I made Tom wear them for a little while. It is not quite the same, as we can turn our eyes to compensate, but it is still pretty dramatic to put those goggles on. If anyone wants to borrow them, I'd be glad to share! It just pulls at my heart, all the time. I don't know what else I can do. Moms just want their kids to be happy and it is REALLY hard when they aren't!
That's all for now....
Wednesday, October 3, 2012
Debate
Soon, the first presidential debate will air. I may have to tape it and watch it. Aly has swim practice tonight. I really want to know who to vote for this year. I consider myself a true independent and typically vote for whomever comes closest to matching the positions on the topics that I feel are important. This year, at this point, I really have no idea who I will vote for and I'm not using this blog to state my political views. I know we can't keep going down the same path, but I also don't think the other side will do much better. If I had a third option I'd be a happy camper. Many have said to me, "well you do have a 3rd option, but then you'd be throwing your vote away." Well, really, what is the difference if I don't want to vote for either candidate? And maybe, there are enough people, like me, that feel the same way?
There are so many topics that you don't hear any discussion about and many aren't addressed until they are experienced first hand. I have been posting on Facebook, for the month of September, facts about pediatric cancer on the Rally 4 Aly page. September was pediatric cancer awareness month. Another mom, who's also had a child with cancer, posted a picture that said something like, for most people September is cancer awareness month, for people experiencing cancer, every month is awareness month. Aly's cancer battle has opened my eyes to so many things, good and bad. I see so many deficits now that I didn't see before. Issues with health care, cancer treatments, patient care. Issues with schools and how there is a major lack of funding to handle special education and children with disabilities and other health issues.
I really wish there was a way that I, just one person, could make a huge difference! I know I'm like so many others, when I look at the obstacles and what it would take to make just a small change, I freak out and think, how does anything ever change?
I had a meeting, last week, at Aly's school. I am going to preface this by saying, they have been outstandingly accommodating to Aly and her needs. I love the staff and I can't say enough good things about all they have done for our family. I think the change needs to come from state funding, or higher up in the chain of command. I saw issues when I worked, for a short time, as a para for special ed., a few years ago, and now that Aly's vision issues have put her in the special ed. category, I see it even more. There is a lack of funding for staff to help with special needs children. It seems that is where the first budget cuts are made. It seems to take months to get your child "qualified" for special education and then once they are the needs aren't easily met. I attempted to see if Aly could get into an adaptive phy. ed. class because she is unable to participate in any sport that has flying objects. Yes, limiting right? So, I was hoping that the meeting would provide a quick solution. Instead, it showed me that options are very limited and very complicated. It is unfortunate. How does one going about changing something like that? It is a minority of children that need these programs and because of that it seems that they lose out.
I sit here and wonder about how viewpoints can be changed. I've seen so many facts, this last month, in relation to how children's cancer research does not get the funding because it is such a small fraction of cancers overall, yet it is one of the leading causes of death in children. I ask myself, am I doing what is necessary to help Aly recover from her cancer experience? No follow up, such as physical therapy or psych help was ever suggested. Yet, I read adult cancer magazines and they say how helpful physical therapy is in recovery....I think about Aly's experiences in the hospital and how much better it could've been. Even after having the treatments at a children's hospital.
I, still, would like to start some type of children's cancer survivor group, but there again, I don't know where to start. It would be nice to have some type of chat session where kids could just get together and talk and share their experiences. I still haven't found anything like that for Aly. It surprises me. I'm still digging....
Ok, I'll get off the soapbox now...Aly had an appointment with our eye doctor this week. As expected, there has been no significant change in her vision. Aly has a very small area, in her right eye, that she can see out of when her left eye is covered. The vision in that area has changed for the better. It is clearer than it was (her last appointment was right after treatments were completed), but it is such a small little area, it doesn't help her function any differently. We asked about any possible medical advances in vision research. He said, "at this point there is not enough concrete evidence to warrant any attempts." He said there has been work done with stem cells, in China, but the numbers don't back up the work. He said the risks far outweigh the potential benefits. He told Aly to wear glasses, at all times, to protect the vision she has left. We need to be thankful that she has some vision and is able to be pretty independent and read, learn, enjoy as much as she can....
There are so many topics that you don't hear any discussion about and many aren't addressed until they are experienced first hand. I have been posting on Facebook, for the month of September, facts about pediatric cancer on the Rally 4 Aly page. September was pediatric cancer awareness month. Another mom, who's also had a child with cancer, posted a picture that said something like, for most people September is cancer awareness month, for people experiencing cancer, every month is awareness month. Aly's cancer battle has opened my eyes to so many things, good and bad. I see so many deficits now that I didn't see before. Issues with health care, cancer treatments, patient care. Issues with schools and how there is a major lack of funding to handle special education and children with disabilities and other health issues.
I really wish there was a way that I, just one person, could make a huge difference! I know I'm like so many others, when I look at the obstacles and what it would take to make just a small change, I freak out and think, how does anything ever change?
I had a meeting, last week, at Aly's school. I am going to preface this by saying, they have been outstandingly accommodating to Aly and her needs. I love the staff and I can't say enough good things about all they have done for our family. I think the change needs to come from state funding, or higher up in the chain of command. I saw issues when I worked, for a short time, as a para for special ed., a few years ago, and now that Aly's vision issues have put her in the special ed. category, I see it even more. There is a lack of funding for staff to help with special needs children. It seems that is where the first budget cuts are made. It seems to take months to get your child "qualified" for special education and then once they are the needs aren't easily met. I attempted to see if Aly could get into an adaptive phy. ed. class because she is unable to participate in any sport that has flying objects. Yes, limiting right? So, I was hoping that the meeting would provide a quick solution. Instead, it showed me that options are very limited and very complicated. It is unfortunate. How does one going about changing something like that? It is a minority of children that need these programs and because of that it seems that they lose out.
I sit here and wonder about how viewpoints can be changed. I've seen so many facts, this last month, in relation to how children's cancer research does not get the funding because it is such a small fraction of cancers overall, yet it is one of the leading causes of death in children. I ask myself, am I doing what is necessary to help Aly recover from her cancer experience? No follow up, such as physical therapy or psych help was ever suggested. Yet, I read adult cancer magazines and they say how helpful physical therapy is in recovery....I think about Aly's experiences in the hospital and how much better it could've been. Even after having the treatments at a children's hospital.
I, still, would like to start some type of children's cancer survivor group, but there again, I don't know where to start. It would be nice to have some type of chat session where kids could just get together and talk and share their experiences. I still haven't found anything like that for Aly. It surprises me. I'm still digging....
Ok, I'll get off the soapbox now...Aly had an appointment with our eye doctor this week. As expected, there has been no significant change in her vision. Aly has a very small area, in her right eye, that she can see out of when her left eye is covered. The vision in that area has changed for the better. It is clearer than it was (her last appointment was right after treatments were completed), but it is such a small little area, it doesn't help her function any differently. We asked about any possible medical advances in vision research. He said, "at this point there is not enough concrete evidence to warrant any attempts." He said there has been work done with stem cells, in China, but the numbers don't back up the work. He said the risks far outweigh the potential benefits. He told Aly to wear glasses, at all times, to protect the vision she has left. We need to be thankful that she has some vision and is able to be pretty independent and read, learn, enjoy as much as she can....
Sunday, September 23, 2012
Conversations with Aly
I think I may change the blog to "Conversations with Aly"...
She is such a mature soul, but still has that childhood innocent thinking that reminds you that she is still a kid. Yesterday, she and I were on the way to my nephew's son's birthday party (Happy Birthday, again, Jack!). A song came on the radio and I said, "I like this song, but I don't like what it is about." Aly asked what I meant and I told her that it sounds like the song is about a girl with a drug problem. It has such a happy beat to it, but the lyrics are sad. Aly goes on to say, "Yeah, I'm never going to mess up my life with drugs. I take enough, but those are there to help me." Then, "I WAS happy to have them in the hospital because they'd help me forget about what was going on." Sometimes I am just flabbergasted and left without words to say when I talk with Aly. This conversation led her back to memories of being in the hospital. One pain medication she took made her see webs, and she started talking about how she couldn't remember why she started calling them "web-ies". She then said she remembered me taking her down to the jacuzzi at the hospital, and she remembered we were laughing at something but she couldn't remember what it was. I reminded her that we had put a little bubble bath in the jacuzzi and how the tub was pretty much overflowing with bubbles because the jets were so strong! That was right after her brain surgery. The first time she felt like getting up to walk. We pretty much bribed her to walk saying, "they have a jacuzzi tub on this floor, that could be your walk for the day." She could never get enough "warm" things. We also talked about "toasty tea". Aly loved the hot tea and how it made her warm inside. She talked about how the nurses thought that was "so cute" when she called it toasty tea. She couldn't figure out why they thought that was so funny and cute! She also talked about how one night she was really chatty and she felt sorry for Kevin because he was trying to sleep, but she couldn't sleep and just wanted to talk. She felt sorry for him because he had to get up and go to work the next day...I am just glad that she seems to remember more good times than bad times from being in that dang hospital! or maybe that is what she chooses to talk about. I don't know! All I know is I was glad it was a 20 minute drive so she could get all this out!
Anyways, things are going pretty smoothly... knock on wood! I'm still totally frustrated with doctors, that will be a never ending thing I'm afraid. At Aly's appointment on 8-31, we were told a person who does yoga with children survivors would call us and give us information about her program. We were told we'd hear from the ENT who was going to do botox injections to see if they'd help Aly's jaw. We were also told we should hear, soon, from the psych people who did the neurology test on Aly. At this point, we have not heard from the yoga instructor, we have not heard from the psych team and it took 2 weeks of phone tag to connect with the ENT doc who told me to call right back for an appointment for the injections. This was last Tuesday. They said their first opening was October 22, a month away! GRRR...I don't get it, never will get it. When Aly went in for the psych testing, the doctor actually said, "I'm not good at getting the reports out on time. If you don't hear from me within 6 weeks, call my office." Really???? Is that my job responsibility, to be your secretary? I'm beginning to think that is my new role, following up on doctors. If only I got paid to do so! I'd be making good money by now! The worst feeling is that I am feeling complacent, like it is ok to wait this long for results. It seems to have become the norm in today's society, so do I just let it be that way or do I hound people like there is no tomorrow? It is just SOOO frustrating.
She is such a mature soul, but still has that childhood innocent thinking that reminds you that she is still a kid. Yesterday, she and I were on the way to my nephew's son's birthday party (Happy Birthday, again, Jack!). A song came on the radio and I said, "I like this song, but I don't like what it is about." Aly asked what I meant and I told her that it sounds like the song is about a girl with a drug problem. It has such a happy beat to it, but the lyrics are sad. Aly goes on to say, "Yeah, I'm never going to mess up my life with drugs. I take enough, but those are there to help me." Then, "I WAS happy to have them in the hospital because they'd help me forget about what was going on." Sometimes I am just flabbergasted and left without words to say when I talk with Aly. This conversation led her back to memories of being in the hospital. One pain medication she took made her see webs, and she started talking about how she couldn't remember why she started calling them "web-ies". She then said she remembered me taking her down to the jacuzzi at the hospital, and she remembered we were laughing at something but she couldn't remember what it was. I reminded her that we had put a little bubble bath in the jacuzzi and how the tub was pretty much overflowing with bubbles because the jets were so strong! That was right after her brain surgery. The first time she felt like getting up to walk. We pretty much bribed her to walk saying, "they have a jacuzzi tub on this floor, that could be your walk for the day." She could never get enough "warm" things. We also talked about "toasty tea". Aly loved the hot tea and how it made her warm inside. She talked about how the nurses thought that was "so cute" when she called it toasty tea. She couldn't figure out why they thought that was so funny and cute! She also talked about how one night she was really chatty and she felt sorry for Kevin because he was trying to sleep, but she couldn't sleep and just wanted to talk. She felt sorry for him because he had to get up and go to work the next day...I am just glad that she seems to remember more good times than bad times from being in that dang hospital! or maybe that is what she chooses to talk about. I don't know! All I know is I was glad it was a 20 minute drive so she could get all this out!
Anyways, things are going pretty smoothly... knock on wood! I'm still totally frustrated with doctors, that will be a never ending thing I'm afraid. At Aly's appointment on 8-31, we were told a person who does yoga with children survivors would call us and give us information about her program. We were told we'd hear from the ENT who was going to do botox injections to see if they'd help Aly's jaw. We were also told we should hear, soon, from the psych people who did the neurology test on Aly. At this point, we have not heard from the yoga instructor, we have not heard from the psych team and it took 2 weeks of phone tag to connect with the ENT doc who told me to call right back for an appointment for the injections. This was last Tuesday. They said their first opening was October 22, a month away! GRRR...I don't get it, never will get it. When Aly went in for the psych testing, the doctor actually said, "I'm not good at getting the reports out on time. If you don't hear from me within 6 weeks, call my office." Really???? Is that my job responsibility, to be your secretary? I'm beginning to think that is my new role, following up on doctors. If only I got paid to do so! I'd be making good money by now! The worst feeling is that I am feeling complacent, like it is ok to wait this long for results. It seems to have become the norm in today's society, so do I just let it be that way or do I hound people like there is no tomorrow? It is just SOOO frustrating.
Tuesday, September 11, 2012
Good Stuff
Well, I should have posted this sooner, I put it on Facebook...Aly is a student council member! She is excited. I'd like to see the short video recording she did. All candidates had to do a little campaign video. I was told that she said the school has done so much for her, she wants to give back. Cool! Her first meeting is tomorrow morning. They get to help decide what dress up days the middle school will have for Homecoming week. Sounds like fun! I should tell her to have an 80's day, with all the fluorescent clothing out during back to school shopping, I felt like it was back to school time for me! I told Aly it all was similar to what we were wearing in high school. She just rolled her eyes at me! Isn't it true though? I saw bright shirts cut short, or off the shoulder style with a tank top underneath, and the bright colored pants that look like they'd glow in the dark and don't forget the shoes...converse high tops and bright laces! Crazy...I guess it's true that fashion follows a 20 year cycle, so what's coming next the 90's with big shoulder pads?? LOL!
Anyways, in other news, Aly had a check up with the Endocrine Dr. today. It went well. She went over the results from labs taken before her most recent MRI. They checked her growth hormone levels. She said they were doing great, even on the lower dosage that Aly is on. The normal range is anywhere from 97-332, with the mean being 194. Before Aly started the hormones, her level was around 40. On the hormone treatment, it is currently at 297. Yeah! That means that we can actually decrease a bit. She is on the higher side of the normal range. That makes me feel better about the whole issue. I wanted to be sure she was getting what she needed, but not have other issues/side affects that she was having on the higher dosage. Aly is glad that she can continue the smaller dose. It doesn't take as long to inject. It also seems to be producing some height! From the time she completed treatments in November 2011 until May 2012 she only grew .95 cm. From May 2012 until today, she has gained 4.26 cm, which is about 1 1/2 inches. Fantastic! It is nice to have some good news and proof that we seem to be on the right track. The Dr. said Aly should continue to grow upwards and develop lean muscle mass as she becomes more active.
Good Day!
Anyways, in other news, Aly had a check up with the Endocrine Dr. today. It went well. She went over the results from labs taken before her most recent MRI. They checked her growth hormone levels. She said they were doing great, even on the lower dosage that Aly is on. The normal range is anywhere from 97-332, with the mean being 194. Before Aly started the hormones, her level was around 40. On the hormone treatment, it is currently at 297. Yeah! That means that we can actually decrease a bit. She is on the higher side of the normal range. That makes me feel better about the whole issue. I wanted to be sure she was getting what she needed, but not have other issues/side affects that she was having on the higher dosage. Aly is glad that she can continue the smaller dose. It doesn't take as long to inject. It also seems to be producing some height! From the time she completed treatments in November 2011 until May 2012 she only grew .95 cm. From May 2012 until today, she has gained 4.26 cm, which is about 1 1/2 inches. Fantastic! It is nice to have some good news and proof that we seem to be on the right track. The Dr. said Aly should continue to grow upwards and develop lean muscle mass as she becomes more active.
Good Day!
Tuesday, September 4, 2012
Back to School!
Today is the first day of school for Aly! Thomas has been in school for 2 weeks! I drop Aly off, in the mornings, on my way to work. On the way to school Aly says, "I'm kind of excited that school is starting." She is happy to be able to attend the first day. Last year, she didn't get to join her classmates until November 1st.
This year she has some big plans, already. She wants to campaign for student council. She spent all evening, last night, coloring a poster that says, "Vote for Aly". So cute. During the open house, she picked up some worksheets that have to be filled out in order to run for council. It had questions to answer. One was, "what makes you a good candidate?" Aly said that going through and surviving cancer has taught that she can do things she didn't think she was capable of. She also said she likes to volunteer her time and help people at home and in her community. Definitely true. I hope she makes it. She would be a great student council member. Anybody who has kids at Middle School East...ask them to vote for Aly! :)
Aly's cancer doctor said that Aly will need to do another MRI in December. If that one is clear, we will go to 2 per year! Yeah! November will be the one year anniversary of being cancer free!
Another reminder to consider a donation to CureSearch as September is Childhood Cancer Awareness Month. All donations are tax deductible and 94.6% of proceeds go to research for finding a cure! We are walking, in St.Paul on Saturday. We have joined Luke Letellier's team for walking. Join us if you'd like!
www.curesearchwalk.org/twincities/teamluke
This year she has some big plans, already. She wants to campaign for student council. She spent all evening, last night, coloring a poster that says, "Vote for Aly". So cute. During the open house, she picked up some worksheets that have to be filled out in order to run for council. It had questions to answer. One was, "what makes you a good candidate?" Aly said that going through and surviving cancer has taught that she can do things she didn't think she was capable of. She also said she likes to volunteer her time and help people at home and in her community. Definitely true. I hope she makes it. She would be a great student council member. Anybody who has kids at Middle School East...ask them to vote for Aly! :)
Aly's cancer doctor said that Aly will need to do another MRI in December. If that one is clear, we will go to 2 per year! Yeah! November will be the one year anniversary of being cancer free!
Another reminder to consider a donation to CureSearch as September is Childhood Cancer Awareness Month. All donations are tax deductible and 94.6% of proceeds go to research for finding a cure! We are walking, in St.Paul on Saturday. We have joined Luke Letellier's team for walking. Join us if you'd like!
www.curesearchwalk.org/twincities/teamluke
Saturday, September 1, 2012
Saturday, August 25, 2012
A Sign...
Have you ever seen a sign that just spoke to you? That you just got a certain feeling from? Well, on our very LONG road trip, this sign spoke to me. Not once, but twice. It is a town in Southern Minnesota, somewhere near the Iowa/Minnesota border. I saw it on the way out of Minnesota. I thought about it, many times, during our trip. The first time I saw it, I wondered what it would be like to live in the city of Hope. Or say, "I'm from Hope." During our trip, I thought, "I hope I see that sign on our way home." I was trying to rack my brain to remember where that city was, yes it was a very long drive and I forgot where it was. I kind of watched for it, off and on, on our way home. Somehow, once again, it stuck out like a sore thumb (do you ever wonder where that saying came from?) Anyways, yes, there it was, just after crossing the border into Minnesota. Not the greatest picture but I got it. I was driving, and well, yes, trying to operate the camera on my iphone at the same time! Naughty, I know, but I just had to snap it. I just thought it would be a cool picture...exit here for Hope! I am planning to frame it and hang it somewhere! :)
Mainly "Hope" kept crossing my mind because it seems to mean so much to Aly. She doesn't talk about it often, but it keeps popping up here and there. When she was first diagnosed, her fourth grade teacher, Mrs. Woods, gave her a stuffed dog. Aly named it Hope. Most recently, we ordered an American Girl Doll for Aly...for those of you not on Facebook, I had posted that AMG FINALLY came out with a bald doll. Aly had to have one. During Aly's fight, I had ordered an accessory for a doll Aly already had and I asked them why they don't have a bald doll and made the suggestion that it would be nice for girls going through cancer or other illnesses that cause balding to have a doll that looked like them. (No, I'm not taking credit for them actually producing these dolls. I'd have to guess they've received MANY requests.)
To get back on track...Aly received the doll and, yes, named this one Hope. I didn't feel like I needed to ask her why. It has been a recurring theme. Every time this word is mentioned, by Aly, it warms my heart. This girl is something so special. She can't stop thinking about hope and hoping for a better future...adults take notice, your kids can teach you things!
Our trip went pretty well. Our first stop was to get Tom settled in his dorm in Lincoln, Nebraska. Yes, I shed some tears. Not too many, knowing that I'd see him a week later for his birthday. But, yes I will admit it. I shed more because he seemed to really want us to leave! He seemed excited for the adventure that was about to begin. Nobody ever told me it would be so hard to let your kids grow up and watch them pull away! Of course I loved getting a text from him, tonight, asking if anything would happen to his white clothes in cold water! Mom is still needed after all, YES!
After leaving Tom, we continued on to Austin, TX to see my brother Jeff and his lovely wife Steffani and their grown up kids. Steffani has been through the college years and she knew exactly what I needed. We arrived late Friday night, and on Saturday morning, I was told I had a "meeting" to go to. Steffani had set up a massage appointment for me. Then she took Aly and I to get manicures. What a treat! Thank you Steffani! You knew! :)
During our trip, Aly came down with an inner ear infection. We ended up taking her to an urgent care because she said she was in so much pain. She was having what she described as a headache and the pain was at the base of her skull and she said, behind her right ear. She was crying and just out of sorts. At some points she was just so dramatic, I couldn't believe there would be that much pain. The doctor took one look in her ear and said, "oh yeah, it's very red in there." He said Aly had, "a doozy of an ear infection." As soon as we heard that there was major relief, mostly from Aly. It was like a switch went off and she was back to her old self, for the most part. She still had some pain and discomfort, but it seemed a lot less than before. She admitted she was extremely worried. Granted, she has every right to be after all she's been through, but it was noticeable that she was overreacting. It is frustrating that something like this would cause her to freak. It wasn't a pleasant thing to see, and it tells me, further, that she would benefit from some type of counseling or group session with other survivors.
Once the diagnosis of the ear infection was taken care of, and antibiotics started, Aly was feeling better and wanted to give our trip to Schlitterbahn's a try. We had to switch our plan from Monday, to Tuesday, but we got it in! Thank you to the Wesloh family who have connections at Schlitterbahn's. We were given free tickets to enjoy the waterpark! It turned out to be a great blessing because we weren't able to stay all day and make the most of the park. Aly wasn't feeling the best, so we took it easy, mainly staying on the lazy river rides. She still had a lot of fun, and said it was everything she wanted! Uncle Jeff attempted to take her on a tube slide, but they ended up waiting about 30 minutes and then the ride broke down! That was the only disappointment! To wait all that time with anticipation only to have it dashed! Aly's ear pain was starting to return as they were waiting, so they gave up and came down from the ride line. It was time to go.
We have also been continuing the increase on the growth hormones. It was increased to .5 dosage this week and right away, the desmopressin to control her urine output stopped working as well. She has now been getting up 2-3 times in the early morning to go. I called the Dr. and, as usual, our doctor was out of the office. Do they ever work? I talked with the Doc on call and was told to drop the dosage back down. This doc said that if we continue on the lower dose Aly will not get the optimal results, so they will have to discuss what to do. Our doc said that some kids whose body is not making any growth hormones can do very well on the small doses. I REALLY don't get the difference in opinions. I will have to wait until Monday and ask our doc AGAIN! Have I said before that I feel like Aly is a lab rat? I have lost so much faith in doctors. It is a sad statement, I know. I need that city of "Hope"...I think!
Wednesday, we drove back to Nebraska. Thursday we spent the afternoon with Tom and took him out for a birthday dinner of his choice. He then asked if we could meet him for a late breakfast between his morning classes on Friday before we left for home. That was a nice treat (his asking). We made it home Friday evening. I am feeling overfed, overly lazy after sitting so much, but the sun, relaxation and fun was much needed!
Today, we volunteered at the Meat Raffle. We met another family going through cancer. The raffle was to raise money to support Devon, a 5 year old boy, with Lukemia, and his family. It seems the circle is getting bigger and bigger. I don't know if it just because we've been through it or if a bigger light is shining on cancer, or if there are truly more cancers diagnosed. We have also signed up to walk in the CURE Search Walk on September 8. We have joined Luke's Team. I asked Aly if we should join Luke's family or start our own team for the walk. She, being the unselfish person that she is, said, "I think we should join Luke's." If you'd like to join us or donate towards the search for the cure please follow the link below!
http://www.curesearchwalk.org/twincities/teamluke
Monday, August 6, 2012
Wow Time Flies!
The growth hormones are going good now that we are starting over. Just to give you an idea, her original dose was 1.5 ml. Now, they started at .1 ml and we are increasing by .1 each week. She is currently at .2 ml. The doctor came back to us and said, "some kids who don't produce ANY growth hormone can get by at a much lower dose." Well, I guess! Sometimes I feel like Aly is the test subject. Why did they start her so high then?? They want us to increase until we get to .6 and see how she's doing at that point. We
Aly continues to have the jaw locks. I've been waiting to hear from the doc, as Aly would like to do something about them, I guess I
The next couple of weeks are going to fly by. We are head to Nebraska next Wednesday. Tom can move in on the 16th. From there, Kevin, Aly and I are going to drive down to Texas to visit Uncle Jeff. It was promised to Aly that she would receive a trip to Schlitterbahn's, the largest water park in the U.S. It is between Austin and San Antonio. We will stay a few days and then stop back in Nebraska to help Tom celebrate #18 on the 23rd.
Upon our return, it will be shopping for school clothes for Aly. Nothing is fitting her anymore. She, right now, is trying on all her clothes and she just came and told me she has 7 shirts that fit. We've been trying to find jeans that fit around her swimmer's legs and newly obtained belly. We've been to 4 stores and no luck. What is with all the skinny jeans? She looks healthy and tanned from the time in the pool! It is wonderful! We are volunteering at Ditto's Meat Raffle on 8/25. The swim team is donating proceeds to a young boy with cancer, so we want to return the favor everyone did for us. Join us if you are looking for something to do. 1:30-5pm on Saturday 8/25.
It will also be MRI time on 8/31. Please say a prayer that it will be clear, AGAIN!
Anyways, just wanted to check in. It's been busy here with getting Tom ready to go, family visiting, and just summertime fun! It is so nice to be able to say we've had some fun this summer! Thank you for your continued support, prayers, thoughts!
Wednesday, July 18, 2012
RIDE FOR KIDS
I just wanted to share a quick note that the Ride for Kids event we went to on Sunday was awesome! This was our first time attending an event like this. Thank you Elaine, Lynn and Amber for participating and riding on Aly's behalf. Thank you to Justin and my grand nephews Austin and Jack for coming out to watch with us. Next year, we will definitely have to have Aly there. She would've loved riding a motorcycle. She is the daredevil of the family! Aly was in North Carolina with Grandma and Grandpa, so she wasn't able to join the festivities.
This ride was a fundraiser to benefit the Pediatric Brain Tumor Foundation. They offer support to family's, aid in research for a
We were told that, everyday, there are 11 children diagnosed with a brain tumor! That is 11 too many! A cure needs to be found!
We will definitely be attending this event next year. I hope that more families will attend too. It didn't seem to be widely advertised and surprisingly we didn't hear about it from any caregivers we've been in contact with. It could be a huge event with a little more push.
Aly is headed home, with Grandma and Grandpa today. They are driving, and are planning to arrive back in MN on Friday. Yeah! We also finally got an answer on fixing the pool. The owner of the company came out, looked at the pool and said, "yes, this is unacceptable." FINALLY! So, now we need to figure out when to have it fixed, again. I think we'll wait until this heat goes away! I'm
One of these days, I'm going to figure out how to put in pics and keep the typing where I want it...sorry for the unorganized blog!
Friday, July 13, 2012
Garage Sale
If you happen to be out and about tomorrow (Saturday, June 14), we are having a garage sale. We will be accepting fundraising donations for the Pediatric Brain Tumor Foundation. My niece-in-law's aunt is riding in the Ride for Kids, on Sunday, in honor of Aly. I am giving wristbands and kids' size Rally for Aly shirts away for any donation over $2.00... 4546 Melina Ave NE, St. Michael
Please follow this link for more information on the foundation...http://www.pbtfus.org/
P.S. - you can write a check to Pediatric Brain Tumor Foundation so you can claim a tax deduction...
Please follow this link for more information on the foundation...http://www.pbtfus.org/
P.S. - you can write a check to Pediatric Brain Tumor Foundation so you can claim a tax deduction...
Monday, July 9, 2012
thoughtful, fun, one inconsiderate...
The title of my post sums up the people Aly and I met on our weekend in Atlanta, Georgia. Aly and I flew down to meet my mom and dad and have some fun for a few days. I flew home, on Sunday, and Aly rode back with my parents to North Carolina. She is spending some time with them and then they will all be driving up to Minnesota for a visit.
Aly was using her white cane, at the airport, as we thought it would help with the crowds. We had printed our boarding passes at home, so we went directly to the security check. Upon arrival there, the man at the entrance saw Aly's cane and proceeded to direct us to the First Class lane so we could get through easily. This is where thoughtful comes in. I thought that was very nice. He didn't have to do that, but he saw someone who he thought needed assistance. It was a kind thing to do. It only took a few minutes for us to get through security. We were on our way to the gate. We were early because I had no idea how long it would take to get through security, but it didn't seem to take long before the plane was ready to board. As I handed our boarding passes to the agent, she saw Aly's cane and said, "just a moment." She too, was a thoughtful person. She took a few moments to get on her computer and we found out she upgraded us (at no charge!) to business class seats that were still open. Wow, was that nice! I felt spoiled, but I thought that was great. We were in the first row of the plane! Another thoughtful person, what a great way to start a travel day!
We made it to Atlanta with no issues. The plane was actually early! I'm thinking I will fly Air Tran again. Anyways, Grandma and Grandpa were there, to greet us, as we got through the baggage claim area. They were both wearing their Rally for Aly shirts. More thoughtful people! :) It was so nice to see them. My Dad had heart surgery on May 1 and I hadn't seen him since early this year, so I was anxious to see him. He looks fabulous and seems to be feeling much healthier. My Mom always looks fabulous! We shared hugs and greetings then proceeded to the car and our hotel.
Atlanta is a crazy driving experience. Most of the city has 6 lanes of traffic in both directions! People speed and there is no Minnesota nice down there! If you have to get over for an exit you'd better be ready to cut in front. It is really hard when you are not familiar with the city and are trying to watch for an exit and realize you need to get over 2 or 3 lanes quickly! It is scary none the less!
We spent Thursday evening - Saturday evening having fun. Friday was spent at the Georgia Aquarium. I didn't think we could spend a whole day there, but we pretty much did. It was awesome. They had a great dolphin show and the exhibits were fabulous. It was all indoors so we didn't have to worry about the heat. We all decided we could spend lots of time just sitting watching the fish. They also had a couple of artists doing caricatures and Aly really wanted one, so she sat for that as well. At the end of the tour we stopped at the aquarium gift shop for a while. This is where the one inconsiderate person was. Aly and I were shopping and I wasn't really paying total attention to people around us, so I heard part of what was said. Aly told me the rest. As you know, Aly's hair is really short still since it is just coming in after treatments. She was dressed in shorts and a t-shirt, girly pink and yellow, mind you. Very cute earrings and her purple glasses. Another girl supposedly walked by and looked at Aly funny and I'm not sure if she pointed or what, but I heard her say, "Hey Mom!" The mom then said, "oh, she's just different." Now, like I said I wasn't paying attention and I certainly didn't think they were talking about Aly, so it took a little time to sink in and then Aly said, "well that was rude." By that time, the people were gone and I hadn't seen what they looked like to begin with. I would've had a nice chat with them if I had had the opportunity! Sometimes I think that I should make Aly a banner, like Miss America wears, that says, "CANCER SURVIVOR" for her to wear. Maybe Aly would get positive comments then. I think I am going to be braver when I see people starring at Aly or when they mistake her for a boy, or say something inconsiderate like, "she's just different." I don't want to be rude, but I'd like to educate them and make them think. Would that be bad? Thank God Aly IS different and is able to shrug these things off. At least that's what she seems to do. I always wonder if she internalizes it at all. We usually talk about things as they happen and I remind her that people just don't know and sometimes don't care. As a parent though, it is hard to let things like that go! I just want her to be happy. She's been through enough!
The rest of our trip was great. We had a grand time at the World of Coke on Saturday. Again, there was a lot to see and do. You can taste (I think 80 some) drinks that Coke makes and sells around the world. You can also concoct your own recipe. That was fun. There was a short 3D movie about Coke's secret recipe. The seats moved and bounced us around in sync with some of the action on the screen. I figured out that Aly is unable to see the figures popping off the screen. I think you need both eyes working in unison to be able to see that through the 3D glasses. This is the first 3D I think we've been to since her vision changes. BOOO... Cancer sucks! After the Coke museum, we had lunch at Hard Rock Cafe and then drove out to Stone Mountain. It was a fun filled couple of days. I was sad to leave!
This summer is going by way too quickly. Since Aly was having issues while being on the growth hormones, we (along with the doctor) decided Aly would quit taking them while she is at my folks. There were just too many variables that would be hard to deal with while she was away from home. We will have to restart when Aly gets back home in a couple of weeks. Hopefully, we'll be able to figure out a dose that will work but not give her more problems. They thought it was a problem with her glucose as the hormones can cause blood sugar variances, but they tested her glucose in the labs they took and it was at a normal level. All I know is that once she stopped the growth hormones, the problems she was having also stopped. Go figure!
If anyone has experience with any cancer survivor support groups or know of support groups for children going/or have gone through cancer please let me know. I think it would be nice for Aly to meet others and share her experiences with kids who understand....I will also be exploring the internet and talking with Aly's childlife coordinator...Thanks!
Aly was using her white cane, at the airport, as we thought it would help with the crowds. We had printed our boarding passes at home, so we went directly to the security check. Upon arrival there, the man at the entrance saw Aly's cane and proceeded to direct us to the First Class lane so we could get through easily. This is where thoughtful comes in. I thought that was very nice. He didn't have to do that, but he saw someone who he thought needed assistance. It was a kind thing to do. It only took a few minutes for us to get through security. We were on our way to the gate. We were early because I had no idea how long it would take to get through security, but it didn't seem to take long before the plane was ready to board. As I handed our boarding passes to the agent, she saw Aly's cane and said, "just a moment." She too, was a thoughtful person. She took a few moments to get on her computer and we found out she upgraded us (at no charge!) to business class seats that were still open. Wow, was that nice! I felt spoiled, but I thought that was great. We were in the first row of the plane! Another thoughtful person, what a great way to start a travel day!
We made it to Atlanta with no issues. The plane was actually early! I'm thinking I will fly Air Tran again. Anyways, Grandma and Grandpa were there, to greet us, as we got through the baggage claim area. They were both wearing their Rally for Aly shirts. More thoughtful people! :) It was so nice to see them. My Dad had heart surgery on May 1 and I hadn't seen him since early this year, so I was anxious to see him. He looks fabulous and seems to be feeling much healthier. My Mom always looks fabulous! We shared hugs and greetings then proceeded to the car and our hotel.
Atlanta is a crazy driving experience. Most of the city has 6 lanes of traffic in both directions! People speed and there is no Minnesota nice down there! If you have to get over for an exit you'd better be ready to cut in front. It is really hard when you are not familiar with the city and are trying to watch for an exit and realize you need to get over 2 or 3 lanes quickly! It is scary none the less!
We spent Thursday evening - Saturday evening having fun. Friday was spent at the Georgia Aquarium. I didn't think we could spend a whole day there, but we pretty much did. It was awesome. They had a great dolphin show and the exhibits were fabulous. It was all indoors so we didn't have to worry about the heat. We all decided we could spend lots of time just sitting watching the fish. They also had a couple of artists doing caricatures and Aly really wanted one, so she sat for that as well. At the end of the tour we stopped at the aquarium gift shop for a while. This is where the one inconsiderate person was. Aly and I were shopping and I wasn't really paying total attention to people around us, so I heard part of what was said. Aly told me the rest. As you know, Aly's hair is really short still since it is just coming in after treatments. She was dressed in shorts and a t-shirt, girly pink and yellow, mind you. Very cute earrings and her purple glasses. Another girl supposedly walked by and looked at Aly funny and I'm not sure if she pointed or what, but I heard her say, "Hey Mom!" The mom then said, "oh, she's just different." Now, like I said I wasn't paying attention and I certainly didn't think they were talking about Aly, so it took a little time to sink in and then Aly said, "well that was rude." By that time, the people were gone and I hadn't seen what they looked like to begin with. I would've had a nice chat with them if I had had the opportunity! Sometimes I think that I should make Aly a banner, like Miss America wears, that says, "CANCER SURVIVOR" for her to wear. Maybe Aly would get positive comments then. I think I am going to be braver when I see people starring at Aly or when they mistake her for a boy, or say something inconsiderate like, "she's just different." I don't want to be rude, but I'd like to educate them and make them think. Would that be bad? Thank God Aly IS different and is able to shrug these things off. At least that's what she seems to do. I always wonder if she internalizes it at all. We usually talk about things as they happen and I remind her that people just don't know and sometimes don't care. As a parent though, it is hard to let things like that go! I just want her to be happy. She's been through enough!
The rest of our trip was great. We had a grand time at the World of Coke on Saturday. Again, there was a lot to see and do. You can taste (I think 80 some) drinks that Coke makes and sells around the world. You can also concoct your own recipe. That was fun. There was a short 3D movie about Coke's secret recipe. The seats moved and bounced us around in sync with some of the action on the screen. I figured out that Aly is unable to see the figures popping off the screen. I think you need both eyes working in unison to be able to see that through the 3D glasses. This is the first 3D I think we've been to since her vision changes. BOOO... Cancer sucks! After the Coke museum, we had lunch at Hard Rock Cafe and then drove out to Stone Mountain. It was a fun filled couple of days. I was sad to leave!
This summer is going by way too quickly. Since Aly was having issues while being on the growth hormones, we (along with the doctor) decided Aly would quit taking them while she is at my folks. There were just too many variables that would be hard to deal with while she was away from home. We will have to restart when Aly gets back home in a couple of weeks. Hopefully, we'll be able to figure out a dose that will work but not give her more problems. They thought it was a problem with her glucose as the hormones can cause blood sugar variances, but they tested her glucose in the labs they took and it was at a normal level. All I know is that once she stopped the growth hormones, the problems she was having also stopped. Go figure!
If anyone has experience with any cancer survivor support groups or know of support groups for children going/or have gone through cancer please let me know. I think it would be nice for Aly to meet others and share her experiences with kids who understand....I will also be exploring the internet and talking with Aly's childlife coordinator...Thanks!
Thursday, June 28, 2012
Doctors
I've come to realize that doctors don't know any more than the average person. With their schooling and training, they may be better at investigation and ruling things out, but from what I see they are in the same boat we are. They don't really know.
I am so frustrated with the lack of availability of doctors and them not showing any concern. We sit and wait for lab results and a possible solution for a few days here, a week there and are no closer to solving a problem.
For 3 weeks now, Aly has been on the growth hormones. For 3 weeks now, Aly has been having to get up, during the night, and (sorry for the lack of a better term) has had to pee 3 or 4 times a night. She is back to where she was before we figured out she had the brain tumor. The medication that is supposed to control this is not working like it was before. I can only assume it is the growth hormones throwing her system off. Everything was going great until then. Yet, the Endocrine doctor wants to run labs to rule things out. So, she sends (via regular snail mail mind you) lab orders to our family clinic so we don't have to drive cross country for a blood draw. Me, being the efficient, gotta get things done now type, gets Aly into the clinic the day after I receive the orders. The clinic says they will fax the doctor the results that same afternoon. No call that day. No call the next day, so I call the doctor's office only to find out she is off for 5 days. I talk with the nurse and she says that the other doctors will probably not be able to help because they don't know Aly's history so I should wait until the dr. comes back. GRRR...in the meantime Aly is not getting sleep at night, is tired all the time (wonder why??) and is in the bathroom constantly. I was waiting to see if I could adjust her med. dosage to see if that helped at all. Well, I went ahead and adjusted it anyways. Imagine my lack of surprise when the increase in dosage helped! It still isn't completely solving the problem, but it decreased her nightly bathroom visits from 3 or 4 to 1 or 2.
Finally, Tuesday rolled around and the apologetic doctor calls. Aly's sodium level was fine. With Aly's diabetes insipidus it can be dangerous for her to pee too much or not enough. If her sodium levels swing too much she could have headaches, even seizures. So, that is what they were checking. Even with the increased dosage there were no issues there. But, now that doesn't really solve the issue. I talk with her and ask what can be done. Of course, she wants to rule out everything else, so more labs were ordered to check Aly's thyroid, hormone levels, and to make sure there is no bladder infection, etc. So, back to the lab we go, yesterday. Now, I'm waiting for another phone call. GRRR...
When Aly started the growth hormones we were told they may affect her medication, but she said it is typically affects people so they don't need as much medication. So, par for the course, Aly is the exception once again! The dr. didn't give any concrete answers.
I hate this. I hate the way it has affected Aly. I hate that she is tired, not getting sleep, not feeling as good as she was 3 weeks ago. The growth hormone was supposed to "give her a better sense of well-being." She seems to be getting the opposite. I hate being helpless and not being able to do something to help her. I hate that she has to go through ANY of this.
On another side, I just read an article in CURE magazine (cancer magazine) about how ALL cancer patients should go through rehabilitation therapy to help them deal with fatigue, strength, etc. and I sit and wonder why nothing like that was offered for Aly. We had to pursue such things related to her vision loss. I had been thinking, prior to reading this article, that it seemed so weird that there isn't any follow up care after all these treatments and seeing how weak Aly was and thinking why isn't more done? It is like they did everything they could to cure the cancer so their work is done. A check up and MRI every 3 months and that is it. Nothing to help her get back to where she was before the diagnosis. Aly is still weak, still tired a lot and I sit here and wonder why. How long should chemo and radiation affect a person? Is it still from that or is it due to all the hormonal drugs she's taking. Is she not getting enough of what she needs? I guess I have more questions to ask. Then it is back to more appointments, more poking, waiting, missing work and Aly missing fun time. Which is worse?
I just don't know....
I am so frustrated with the lack of availability of doctors and them not showing any concern. We sit and wait for lab results and a possible solution for a few days here, a week there and are no closer to solving a problem.
For 3 weeks now, Aly has been on the growth hormones. For 3 weeks now, Aly has been having to get up, during the night, and (sorry for the lack of a better term) has had to pee 3 or 4 times a night. She is back to where she was before we figured out she had the brain tumor. The medication that is supposed to control this is not working like it was before. I can only assume it is the growth hormones throwing her system off. Everything was going great until then. Yet, the Endocrine doctor wants to run labs to rule things out. So, she sends (via regular snail mail mind you) lab orders to our family clinic so we don't have to drive cross country for a blood draw. Me, being the efficient, gotta get things done now type, gets Aly into the clinic the day after I receive the orders. The clinic says they will fax the doctor the results that same afternoon. No call that day. No call the next day, so I call the doctor's office only to find out she is off for 5 days. I talk with the nurse and she says that the other doctors will probably not be able to help because they don't know Aly's history so I should wait until the dr. comes back. GRRR...in the meantime Aly is not getting sleep at night, is tired all the time (wonder why??) and is in the bathroom constantly. I was waiting to see if I could adjust her med. dosage to see if that helped at all. Well, I went ahead and adjusted it anyways. Imagine my lack of surprise when the increase in dosage helped! It still isn't completely solving the problem, but it decreased her nightly bathroom visits from 3 or 4 to 1 or 2.
Finally, Tuesday rolled around and the apologetic doctor calls. Aly's sodium level was fine. With Aly's diabetes insipidus it can be dangerous for her to pee too much or not enough. If her sodium levels swing too much she could have headaches, even seizures. So, that is what they were checking. Even with the increased dosage there were no issues there. But, now that doesn't really solve the issue. I talk with her and ask what can be done. Of course, she wants to rule out everything else, so more labs were ordered to check Aly's thyroid, hormone levels, and to make sure there is no bladder infection, etc. So, back to the lab we go, yesterday. Now, I'm waiting for another phone call. GRRR...
When Aly started the growth hormones we were told they may affect her medication, but she said it is typically affects people so they don't need as much medication. So, par for the course, Aly is the exception once again! The dr. didn't give any concrete answers.
I hate this. I hate the way it has affected Aly. I hate that she is tired, not getting sleep, not feeling as good as she was 3 weeks ago. The growth hormone was supposed to "give her a better sense of well-being." She seems to be getting the opposite. I hate being helpless and not being able to do something to help her. I hate that she has to go through ANY of this.
On another side, I just read an article in CURE magazine (cancer magazine) about how ALL cancer patients should go through rehabilitation therapy to help them deal with fatigue, strength, etc. and I sit and wonder why nothing like that was offered for Aly. We had to pursue such things related to her vision loss. I had been thinking, prior to reading this article, that it seemed so weird that there isn't any follow up care after all these treatments and seeing how weak Aly was and thinking why isn't more done? It is like they did everything they could to cure the cancer so their work is done. A check up and MRI every 3 months and that is it. Nothing to help her get back to where she was before the diagnosis. Aly is still weak, still tired a lot and I sit here and wonder why. How long should chemo and radiation affect a person? Is it still from that or is it due to all the hormonal drugs she's taking. Is she not getting enough of what she needs? I guess I have more questions to ask. Then it is back to more appointments, more poking, waiting, missing work and Aly missing fun time. Which is worse?
I just don't know....
Thursday, June 7, 2012
When it rains, it pours, literally!
I'm sorry to be so neglectful with my blog. We have been busy, for what seems like every minute of every day lately. I'm pretty sure I've mentioned that my baby boy is graduating from high school, tomorrow as a matter of fact! In the midst of party planning, our sump pump decided to give out, during the recent heavy rains, and our basement flooded. Not what we needed at this moment in time! We had (the operative word here is had) a finished basement and Tom's room was down there. Now, Tom has been displaced to our pink guest room (used to be Aly's room) and all the furniture, that was in the basement, is now in our garage where we were planning to host the party! Our carpet is gone. Part of the wall would not dry so they had to take that apart. There are no businesses that install carpet quickly, unless you buy really cheap carpet. We will be moving furniture a few times I guess! The hardest part is losing some precious mementos that we had. Tom had some autographed memorabilia that fell off his wall while they had the blowers going to dry out the walls. I had a photo book from a trip we took to D.C. that was damaged. That kind of stuff is difficult to replace and is hard to lose.
Our lives have consisted of meeting repairmen, shopping for party supplies, trying to repair our yard after the pool installation (not easy when it was raining everyday!), trying to organize and get ride of things that came out of the basement storage, doing paperwork for college entrance, etc., etc., etc.! Let the fun times continue! Also, due to the heavy rains, the pool company needs to come out and fix the pool feet that have sunk down into the fabulous clay soil, that we love. To do this, they will need to come out, drain the pool, move it, regrade underneath, reset the pool and we will have to refill it! Oh, joy! "An easy fix" according to the installer! Can you tell our stress levels are maxed??
Aly started her growth hormone therapy in the midst of all this too. It consists of a shot, before bed, every night. She has been doing it all by herself. They came out to show her how to do it and that night she started. The first time, we could see the apprehension on her face and she actually held her breath while inserting the needle. She finally breathed a sigh of relief when she completed it. She is a brave soul! The system Aly has is great. It is a little pen that holds a cartridge with multiple doses. She has to change the needle everyday, but it is very slick and easy to do. It is the smallest needle I've ever seen and Aly said it just feels like a little pinch. I'm relived for her, but still sad that she has to go through this hassle.
That's all for now! I have to get back to party preparations!
Thursday, May 17, 2012
Busy Week
Last Saturday, Aly swam in her first swim meet since completing her cancer treatments. She was so excited. She did pretty well. She swam in a 100 freestyle relay, 50 freestyle, 50 backstroke and 50 breast stroke. Unfortunately, in every race, except the breast stroke, her jaw locked up
during each race. She was able to continue and finish her races, but it definitely affected her times. There was also some confusion, by the workers near the starting blocks. In her 2nd race, Aly almost missed her heat because she was told to wait. In the next race, they told her to go at the wrong time, so Aly ended up in the wrong heat with 13 year olds. At least she got some experience in and I think she was happy to be back in the races. I wish we could figure out this jaw lock thing. It is so frustrating!
Mother's Day was awesome. The kids and Kevin brought me gifts while I was still in bed. Aly had planted some flower seeds at school. She made me a card. On the front it had a picture of the
earth with crying eyes. It said, "Earth without moms." On the inside it said, "Earth needs moms. We need moms. You are the best mom ever." She also treated me to the wonderful driveway art. Very cute! Tom bought me a sweatshirt from Fox Hollow Golf Club, where he works. He also gave me a great card. It had a picture on the front of a mom squirrel and a little squirrel in a tree house and the little squirrel had acorns all over the "floor". The mom squirrel says, "Look at this room! No wonder you can never find anything in here!" Inside it said, "Happy Mother's Day, from your nutty son." What is he going to do without me nagging him next year?? Kevin bought me a pool float so I can relax in Aly's pool.
Aly had a band concert tonight. The band did very well. It was Aly's first of the year. There was one earlier in the year, but it happened to fall on the same night as senior night for Tom's hockey team. Aly graciously gave her concert up so we could attend the one and only senior night. Anyways, once again, during her special activities, her jaw locked up on her. It hasn't been happening, at all, while playing her flute. Of course, on the one special occasion...BOOO! I'm beginning to wonder if it has something to do with nervousness or maybe clenching her jaw?? I don't know. I just feel sad that it happens at these important events and not at other times. I sometimes think we should pursue some treatments, but I hate to subject her to something if there is no guarantee it will help.
On another note, we are waiting for all the ducks to be put in a row so she can start her growth hormones. It has been approved by our insurance (yeah!), but now we have to wait for them to contact the manufacturer who, I guess, sends out a representative/nurse to show us how to administer it. Everything takes so much time and as usual, it is hurry up and wait. Aly is excited to start, but not excited to have to get a shot every day. We were told it is some kind of pen that has several doses in a cartridge, so at least it will not be the hassle of filling a needle out of a bottle. I believe it will be something like an EpiPen??? Hopefully it won't hurt! I think the benefits will outweigh the needle. The endocrine doctor said it will help her with lean muscle mass, so she will be able to get back in good physical shape. She will obviously start growing upwards, and the dr. said it helps give more of a general sense of well being.
Other than that, we have already been enjoying the pool. We all got in it on Mother's Day, and had some special family time. It was truly a lovely day with just the 4 of us!
Monday, May 7, 2012
Make A Wish...
On Sunday, between rains, our Make a Wish representatives came out to see the completed project (their job is done, but the rain has impeded our yard repairs!). They had a little celebration for Aly. We invited the neighborhood over and had some cake, games and a visit from the fire department who gave the neighborhood kids a ride around the block in the fire truck. AWESOME! Thank you Make A Wish! Now all we need is some warm weather! Temperatures in the 60's is not exactly swimming weather...
Tuesday, May 1, 2012
May Day
As you can see by the pics, the pool is just about complete. A couple of city workers (one was a fireman) came out and hooked up a fire hose to the hydrant, nearby, to complete the fill. We had our hose in there and it ran from early morning until 7pm. It didn't even fill it half way! After these pics, they came out and installed fencing that goes along the top of the pool that will meet city code until we can tackle putting a deck up around the pool. Of course, now that the pool is usable, the weather is miserable. It is supposed to rain most of this week! BOO...
I don't think I posted since the MRI, but Aly is happy that she could discontinue on of the meds she was taking. It was phosphorus. They were 2 huge pills, twice a day, so she is thrilled. She is currently down to taking 3 medications a day. Aly's cancer doctor gave us the go ahead to start the growth hormones, so we have to talk with the Endocrine doctor to see when we can start that. Aly really wants to get growing! Even if it means a shot everyday. I wish there was some other way they could administer those! It sounds like she will have to do these for a VERY long time. When she gets a little older she will also have to start on estrogen replacements as well. This will be interesting. I just hope it goes smoothly.
Knock on wood...she hasn't had any of her facial spasms for a long time now. She is still having her jaw lock up but that too is still decreasing. YEAH! The doctor said we may never know what really caused them, but as long as they go away we are ok with that.
That's what's happening here...
Tuesday, April 24, 2012
Monday, April 23, 2012
Time for an MRI
Aly is scheduled for an MRI tomorrow. Please include her in your prayers today and tomorrow that the MRI will, once again, be clear.
Knock on wood...things have been good. The spring/summer season for the swim team has started and Aly is back swimming. She's almost making it through the whole practice and seems to make it a little longer each time. It is an unbelievable turn around from just a few short months ago. We have also been amazed at how well she's been eating. I can't explain what an amazing difference we've seen. Aly has caught Kevin and I, a few times, looking at each other, smiling, shaking our heads at the dinner table. She'll say, "What?" It is just awesome to see her interested in food again. She's gotten to the point where she is trying new things and now likes many things she didn't ever like before. She also makes suggestions on what to fix for dinner or where to go if we are eating out. I just can't get over this "new" Aly. She has also started golfing with us. She decided she wanted to try golfing, not only because the rest of her family plays, but because her physical activities are limited due to her vision constraints. We all went to play 9 holes yesterday afternoon and I think the rest of us will have some strong competition in a couple of years. Aly hit the ball really well! She's decided she likes golf! Yeah! She asked for some golf lessons for her birthday, believe it or not, so that is on her docket as well.
Her facial episodes are still happening occasionally, but seem to be slowly decreasing in frequency. I have to knock on wood again, because every time I say that, they seem to increase again. I asked her, at breakfast time, the other day if she's had any jaw locks lately because she hadn't mentioned any for a few days. Her answer was, "no, I haven't." Well, just a few minutes later she had one while eating. Kevin called me a jinx!
Aly has been mentioning, for weeks, that she wants to go visit her teachers at Big Woods. It is hard because their school hours start and finish before the Middle School. She likes her sleep, so it is also difficult to get her out of bed earlier in the morning too! We decided that tomorrow would be a good day. We thought we'd head that way before we go to Minneapolis for her appointments.
Other than that, we are still waiting on the pool install. It was supposed to happen last week, but the rain had delayed things. They are now telling us Thursday of this week (of course it is supposed to rain Wednesday), we'll see! We need the warm weather back, again, so we can enjoy it once it is in.
Knock on wood...things have been good. The spring/summer season for the swim team has started and Aly is back swimming. She's almost making it through the whole practice and seems to make it a little longer each time. It is an unbelievable turn around from just a few short months ago. We have also been amazed at how well she's been eating. I can't explain what an amazing difference we've seen. Aly has caught Kevin and I, a few times, looking at each other, smiling, shaking our heads at the dinner table. She'll say, "What?" It is just awesome to see her interested in food again. She's gotten to the point where she is trying new things and now likes many things she didn't ever like before. She also makes suggestions on what to fix for dinner or where to go if we are eating out. I just can't get over this "new" Aly. She has also started golfing with us. She decided she wanted to try golfing, not only because the rest of her family plays, but because her physical activities are limited due to her vision constraints. We all went to play 9 holes yesterday afternoon and I think the rest of us will have some strong competition in a couple of years. Aly hit the ball really well! She's decided she likes golf! Yeah! She asked for some golf lessons for her birthday, believe it or not, so that is on her docket as well.
Her facial episodes are still happening occasionally, but seem to be slowly decreasing in frequency. I have to knock on wood again, because every time I say that, they seem to increase again. I asked her, at breakfast time, the other day if she's had any jaw locks lately because she hadn't mentioned any for a few days. Her answer was, "no, I haven't." Well, just a few minutes later she had one while eating. Kevin called me a jinx!
Aly has been mentioning, for weeks, that she wants to go visit her teachers at Big Woods. It is hard because their school hours start and finish before the Middle School. She likes her sleep, so it is also difficult to get her out of bed earlier in the morning too! We decided that tomorrow would be a good day. We thought we'd head that way before we go to Minneapolis for her appointments.
Other than that, we are still waiting on the pool install. It was supposed to happen last week, but the rain had delayed things. They are now telling us Thursday of this week (of course it is supposed to rain Wednesday), we'll see! We need the warm weather back, again, so we can enjoy it once it is in.
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