Monday, July 18, 2011
Japanese Tradition
I went to pick up a package from the post office today, that we missed delivery on on Saturday. It is from a wonderful Japanese family who used to be our neighbors when we lived in Japan. I am in tears after seeing what was inside. In the Japanese culture it is a tradition to make 1000 origami cranes when you wish for something important to come true. Well, in the box for Aly today, was 1000 origami cranes, made one by one and connected together (see pictures below). It is a wish for Aly to be well again. I am so deeply touched. I can't stop the tears as I think about the time spent making these delicate little birds. Thank you Watanabes for the incredible gift and wish for Aly. I'm looking forward to bringing the gift to hospital, this afternoon, to show her. It is amazing!
Sunday, July 17, 2011
Sunday already!
Once again, I apologize for the delay in updating. I stayed overnight at the hospital last night. It is hard to type out a post on an ipod! Aly's blog site is also blocked by the hospital. I have a special code to get in it, but it was not working today for some reason.
I am home now. Grandma Jan is staying with Aly tonight so Kevin and I can work tomorrow. Kevin has a meeting he can't miss and I have payroll to process by 9 am! :)
Anyways, you aren't reading to know what we are up to. This round is going good for Aly. She had a bit of a bump yesterday. The main reason they do this 5 day session in the intensive care unit is so they can use an i.v. drip of the DDAVP medicine that controls her urine output. They can be more precise on the doses vs. the oral pill she takes at home. These chemo chemicals in the 5 day session are very hard on the bladder, so they have to keep pumping in the fluids so the chemicals don't sit in the bladder too long. It is a tricky balance of keeping her sodium levels even. When she goes too much her sodium levels go high which causes very bad headaches and could cause seizures. When she doesn't go enough, her sodium levels drop which make her very tired. Yesterday her sodium level spiked high at one point and she had an extreme headache which caused some vomiting, similar to a migraine. They gave her a dose of morphine and increased the DDAVP. After she slept for awhile she was doing much better.
Now that they have figured out the best course of action, her sodium levels have stayed even and she hasn't had any other issues. She had a very good night of sleep and slept until 9am this morning. She had a great day today and was feeling really good. No vomiting which is a little unusual for this point, but we'll take what we can get! Aly and I spent the morning and early afternoon together. We found an Old Maid card game in the game cupboard at the hospital so we had a fun time with that. We found it to be a little boring with just the two of us, so after a couple of games we included her monkey, "Tiny" in the game. She thought that was hilarious and she was laughing up a storm when she kept picking the old maid from Tiny's hand. We also took some walks. One around the floor during which we talked about this being her last chemo round. We have to drag the i.v. pumps along during these walks and she was complaining about that. I mentioned that hopefully this will be the last time she'll have to be connected to all that and she said, "oh yeah, I forgot about that." Then she got a big smile on her face. During the other walk, we left the floor to go on a hunt for something that sounded good to eat. That was the major battle today. She didn't want to eat anything. (Yesterday she couldn't get enough. They had given her a steroid medication to help protect her bladder as well, and that made her really hungry.) Today was a different story. We took a walk to the gift store where she found some sour skittles. Then we proceeded to the cafeteria where she decided on some plain vanilla yogurt. After eating a little of the yogurt she decided it didn't taste good. Nothing tastes good to her except sour things. We also watched a movie and she let me watch a little of the British Open Golf and then we watched part of the U.S. soccer team playing in the world cup. It is too bad the U.S. lost, they should've won! That was a good game. Although, I am happy for Japan. Our family has many Japanese friends after living in Japan for a couple of years and it should be a big lift after the tough year Japan has had. At one point during the soccer game Aly told me she felt like she had taken some Benadryl and shortly after she fell asleep for a while. She woke up when Kevin and Grandma Jan came. She was still feeling tired when Kevin and I left, so I'm guessing that chemo is kicking in and the next couple of days may be a little more difficult.
I am home now. Grandma Jan is staying with Aly tonight so Kevin and I can work tomorrow. Kevin has a meeting he can't miss and I have payroll to process by 9 am! :)
Anyways, you aren't reading to know what we are up to. This round is going good for Aly. She had a bit of a bump yesterday. The main reason they do this 5 day session in the intensive care unit is so they can use an i.v. drip of the DDAVP medicine that controls her urine output. They can be more precise on the doses vs. the oral pill she takes at home. These chemo chemicals in the 5 day session are very hard on the bladder, so they have to keep pumping in the fluids so the chemicals don't sit in the bladder too long. It is a tricky balance of keeping her sodium levels even. When she goes too much her sodium levels go high which causes very bad headaches and could cause seizures. When she doesn't go enough, her sodium levels drop which make her very tired. Yesterday her sodium level spiked high at one point and she had an extreme headache which caused some vomiting, similar to a migraine. They gave her a dose of morphine and increased the DDAVP. After she slept for awhile she was doing much better.
Now that they have figured out the best course of action, her sodium levels have stayed even and she hasn't had any other issues. She had a very good night of sleep and slept until 9am this morning. She had a great day today and was feeling really good. No vomiting which is a little unusual for this point, but we'll take what we can get! Aly and I spent the morning and early afternoon together. We found an Old Maid card game in the game cupboard at the hospital so we had a fun time with that. We found it to be a little boring with just the two of us, so after a couple of games we included her monkey, "Tiny" in the game. She thought that was hilarious and she was laughing up a storm when she kept picking the old maid from Tiny's hand. We also took some walks. One around the floor during which we talked about this being her last chemo round. We have to drag the i.v. pumps along during these walks and she was complaining about that. I mentioned that hopefully this will be the last time she'll have to be connected to all that and she said, "oh yeah, I forgot about that." Then she got a big smile on her face. During the other walk, we left the floor to go on a hunt for something that sounded good to eat. That was the major battle today. She didn't want to eat anything. (Yesterday she couldn't get enough. They had given her a steroid medication to help protect her bladder as well, and that made her really hungry.) Today was a different story. We took a walk to the gift store where she found some sour skittles. Then we proceeded to the cafeteria where she decided on some plain vanilla yogurt. After eating a little of the yogurt she decided it didn't taste good. Nothing tastes good to her except sour things. We also watched a movie and she let me watch a little of the British Open Golf and then we watched part of the U.S. soccer team playing in the world cup. It is too bad the U.S. lost, they should've won! That was a good game. Although, I am happy for Japan. Our family has many Japanese friends after living in Japan for a couple of years and it should be a big lift after the tough year Japan has had. At one point during the soccer game Aly told me she felt like she had taken some Benadryl and shortly after she fell asleep for a while. She woke up when Kevin and Grandma Jan came. She was still feeling tired when Kevin and I left, so I'm guessing that chemo is kicking in and the next couple of days may be a little more difficult.
Thursday, July 14, 2011
praying for a miracle
Well, we are all set to start the last round of chemo. I'm trying to think of something special to do to celebrate this being the last round. If anyone has any suggestions let me know! We also wanted to celebrate the fact that Aly said she was hungry today! I can't remember the last time I heard that! She had cereal and raspberries for breakfast. A whole apple with carmel dip, popcorn and a little bit of ham for lunch and buttered spaghetti noodles with garlic toast for dinner! I'm giddy about that! Of course the roller coaster will be going down the big hill tomorrow and it will be back to not eating and vomiting again! Gotta celebrate accomplishments while we can!
We met with the neurosurgeon today. He was a nice, quiet, humble man. He told us he could tell just in the short time he spoke with Aly that she is very mature for her age and very smart. I like him already if he could tell that in the few minutes he spent with her. It is, of course, true. However, I don't like that he was pretty confident that the surgery will be necessary. He was looking at the MRI results they did before the last session of chemo. He feels what remains of the tumor is a different texture (he called it fatty) and typically doesn't respond as well to chemo. I'm hoping he is wrong there. When we first found out about this tumor the doctor said it seemed to be a mix of cells, some more liquid. How they tell by just looking at the scans I don't know, but I do know I'm going to be praying extra hard for the tumor to be nonexistent after this last round of chemo. The surgery sounds scary and because of the location has a lot of risks involved. Not to mention it would increase treatment time as he said Aly would need 2-4 weeks recovery time before the radiation process would begin. I just want Aly to be able to move on with her life and get back to normal activities! Please pray for a miracle. Please keep Aly in your thoughts and prayers this weekend. Five days to go!
We met with the neurosurgeon today. He was a nice, quiet, humble man. He told us he could tell just in the short time he spoke with Aly that she is very mature for her age and very smart. I like him already if he could tell that in the few minutes he spent with her. It is, of course, true. However, I don't like that he was pretty confident that the surgery will be necessary. He was looking at the MRI results they did before the last session of chemo. He feels what remains of the tumor is a different texture (he called it fatty) and typically doesn't respond as well to chemo. I'm hoping he is wrong there. When we first found out about this tumor the doctor said it seemed to be a mix of cells, some more liquid. How they tell by just looking at the scans I don't know, but I do know I'm going to be praying extra hard for the tumor to be nonexistent after this last round of chemo. The surgery sounds scary and because of the location has a lot of risks involved. Not to mention it would increase treatment time as he said Aly would need 2-4 weeks recovery time before the radiation process would begin. I just want Aly to be able to move on with her life and get back to normal activities! Please pray for a miracle. Please keep Aly in your thoughts and prayers this weekend. Five days to go!
Wednesday, July 13, 2011
going smoothly
We had a lot of fun at the meet raffle last Saturday. We won a couple of meat packs. One had a beef roast and a pork roast in it and the other had country ribs. We put the beef roast in the crock pot on Monday with veggies...mmmm...very good! The raffles are a lot of fun, I had never been to one. Don't forget to attend if you are able, every Saturday from 1-5 pm until the end of August. Thank you to our wonderful neighbor ladies, Tiffany, Heather, Rene and Gail for volunteering to sell tickets.
After returning home, Aly had a couple more days of morning vomiting, but since that she has had no vomiting and she is eating! She has been craving popcorn lately, had 2 bags yesterday. She is eating pretty good at meal times too. She is feeling good and wants to be active.
On Monday she had a friend over who she hadn't seen for a while. His name is Mitchell. He was in Aly's 2nd grade class and is also on the swim team. I know Aly will get mad at me if she reads this, but it is too cute not to share. Most days Aly is lazy and likes to stay in her pj's. Well, on Monday she got up and showered, put on a dressy top which she just got, and took the time to put earrings in (which she hasn't worn in months except a cute pair her friend made her one day). We all noticed the extra time she spent getting ready for this visit. Not to mention cleaning her room the night before. She continues to say how they are just friends, but Tom and I had to tease a little. Mitchell and Aly are great conversationalists. When you get those two together it is hard to get them to stop talking. It is really fun to listen to all though I didn't listen long.
Tuesday, Grandpa Jack returned home after staying for a week. Tomorrow, we hopefully meet with the neurosurgeon. He has bumped our appointments twice. We still need to wait until the final MRI is done to determine if Aly will need any surgery, but we are meeting to establish a plan just in case.
An at home care nurse came today to draw blood to check Aly's counts and determine whether or not they are good enough to start her last round of chemo. We won't get results until later this afternoon. She is scheduled to go in on Friday if all is good. It was nice not having to drive all the way to the clinic to have that done. We can have a nurse come to us if it is not necessary to see the doctor. I wish the doctor would come to us once in a while!
After returning home, Aly had a couple more days of morning vomiting, but since that she has had no vomiting and she is eating! She has been craving popcorn lately, had 2 bags yesterday. She is eating pretty good at meal times too. She is feeling good and wants to be active.
On Monday she had a friend over who she hadn't seen for a while. His name is Mitchell. He was in Aly's 2nd grade class and is also on the swim team. I know Aly will get mad at me if she reads this, but it is too cute not to share. Most days Aly is lazy and likes to stay in her pj's. Well, on Monday she got up and showered, put on a dressy top which she just got, and took the time to put earrings in (which she hasn't worn in months except a cute pair her friend made her one day). We all noticed the extra time she spent getting ready for this visit. Not to mention cleaning her room the night before. She continues to say how they are just friends, but Tom and I had to tease a little. Mitchell and Aly are great conversationalists. When you get those two together it is hard to get them to stop talking. It is really fun to listen to all though I didn't listen long.
Tuesday, Grandpa Jack returned home after staying for a week. Tomorrow, we hopefully meet with the neurosurgeon. He has bumped our appointments twice. We still need to wait until the final MRI is done to determine if Aly will need any surgery, but we are meeting to establish a plan just in case.
An at home care nurse came today to draw blood to check Aly's counts and determine whether or not they are good enough to start her last round of chemo. We won't get results until later this afternoon. She is scheduled to go in on Friday if all is good. It was nice not having to drive all the way to the clinic to have that done. We can have a nurse come to us if it is not necessary to see the doctor. I wish the doctor would come to us once in a while!
Friday, July 8, 2011
back home
Sorry I didn't update sooner...I spent the night at the hospital with Aly last night. All of our electronic gadgets were out of battery power so I could not update while there.
Aly is home today. We arrived home around 1pm. She had to get a dose of platelets and a medicine which helps stimulate white blood cell growth before we could leave. It is amazing what a bag of blood, platelets and some antibiotics will do to help make someone feel better. Aly was extremely upset that she didn't get to go home on Thursday. They had told us on Wednesday that it will most likely just be an overnight stay. Then on Thursday they said they wanted to make sure the blood cultures they took were negative for bacteria. So we had to wait. She was not a happy camper when I arrived there in the evening. Grandma and Grandpa tried there best to lift her spirits during the day while Kevin and I were at work. They pushed her to go and visit Maddy who was in for chemo and another patient we found out was a friend of a relative. So, that helped a bit, but Aly was frustrated. When she is frustrated she is stubborn. She didn't want to leave her bed, didn't want to eat, just was in the mood to pout. I talked her into watching Mary Poppins with me. Midway through we took a break and took a walk and took the elevator to a floor that had vending machines. We did a mini raid. She picked out fruit snacks and Grape Crush. She didn't have much of each, but it seemed to make her a little happier to break out of the wing for a little bit.
She felt really good today. Had the color back in her cheeks and wanted to just play today. She also ate quite well. A subway sandwich for lunch and spaghetti noodles without sauce and some bread for dinner. We are thrilled when she wants to eat!
Tomorrow, we are planning to attend part of the meat raffle. Please join us if you are in the Saint Michael area. It is at Ditto's Bar from 1-5pm. We will probably arrive around 2 or 3 pm. Hope to see you there!
Aly is home today. We arrived home around 1pm. She had to get a dose of platelets and a medicine which helps stimulate white blood cell growth before we could leave. It is amazing what a bag of blood, platelets and some antibiotics will do to help make someone feel better. Aly was extremely upset that she didn't get to go home on Thursday. They had told us on Wednesday that it will most likely just be an overnight stay. Then on Thursday they said they wanted to make sure the blood cultures they took were negative for bacteria. So we had to wait. She was not a happy camper when I arrived there in the evening. Grandma and Grandpa tried there best to lift her spirits during the day while Kevin and I were at work. They pushed her to go and visit Maddy who was in for chemo and another patient we found out was a friend of a relative. So, that helped a bit, but Aly was frustrated. When she is frustrated she is stubborn. She didn't want to leave her bed, didn't want to eat, just was in the mood to pout. I talked her into watching Mary Poppins with me. Midway through we took a break and took a walk and took the elevator to a floor that had vending machines. We did a mini raid. She picked out fruit snacks and Grape Crush. She didn't have much of each, but it seemed to make her a little happier to break out of the wing for a little bit.
She felt really good today. Had the color back in her cheeks and wanted to just play today. She also ate quite well. A subway sandwich for lunch and spaghetti noodles without sauce and some bread for dinner. We are thrilled when she wants to eat!
Tomorrow, we are planning to attend part of the meat raffle. Please join us if you are in the Saint Michael area. It is at Ditto's Bar from 1-5pm. We will probably arrive around 2 or 3 pm. Hope to see you there!
Wednesday, July 6, 2011
Where do the days go?
Oh, some of these days go by so quickly, others take forever. When you are sitting at a clinic or down at the hospital it seems to do both at the same time. We took Aly down for her weekly check up today. It brought about a blood transfusion as expected, but for some unknown reason she was really dehydrated today. She also was complaining of stomach pain, similar to what she had after the last chemo round, and she was running a fever. Last time it involved the visits to the E.R. This time it involved a wheel chair ride from the clinic over to the hospital and being admitted for the night. They want to observe and make sure nothing serious is going on. They are running blood cultures again and started another course of antibiotics just in case. They are under the impression that the stomach pain may just be a reaction related to her counts being low. We were told that when counts are low sores may develop and Aly may just get them in the stomach region. She did have some redness around her stomach tube as well. So basically, as usual we just don't know.
All I know is it makes for a long day. My dad joined me on this adventure and we were at the clinic from 12:15 until 4. Then it was on to the hospital until Kevin, Tom and my mom came down about 7pm. Kevin is spending the night with Aly and the rest of us stopped for dinner on the way home and arrived home at 9:30pm. By the time we left Aly was looking and feeling much better. She had completed the blood transfusion, was given IV fluids and a received a "stress" dose of hydrocortisone which is a steroid that just gives a boost when she is feeling awful. I think we would've been better off getting her that transfusion on Monday or Tuesday. She was really sluggish yesterday. I think we've been lucky with the prior rounds and getting her in at the right times. These last two rounds I think our appointments were scheduled a little too late and her counts were way too low. We know what to look for now that she has one round to go!
Long, long days...
All I know is it makes for a long day. My dad joined me on this adventure and we were at the clinic from 12:15 until 4. Then it was on to the hospital until Kevin, Tom and my mom came down about 7pm. Kevin is spending the night with Aly and the rest of us stopped for dinner on the way home and arrived home at 9:30pm. By the time we left Aly was looking and feeling much better. She had completed the blood transfusion, was given IV fluids and a received a "stress" dose of hydrocortisone which is a steroid that just gives a boost when she is feeling awful. I think we would've been better off getting her that transfusion on Monday or Tuesday. She was really sluggish yesterday. I think we've been lucky with the prior rounds and getting her in at the right times. These last two rounds I think our appointments were scheduled a little too late and her counts were way too low. We know what to look for now that she has one round to go!
Long, long days...
Tuesday, July 5, 2011
Busy Weekend
Hi Everyone!
I apologize to all of you who check the blog daily as I have been both lazy and busy. Not sure if any of you are being affected by the Minnesota government shutdown. It affected our holiday plans. We usually go to Canterbury Downs to watch the horse races and fireworks on the 3rd, but the shutdown messed that up. That was about the only thing we had planned for the weekend. So we ended up doing odds and ends. Managed to stay busy most of the weekend. My dad arrived back in town on Sunday afternoon.
Aly is doing pretty good. She is at the point now where her blood counts are the lowest so today, she is lacking energy and is not feeling good. She is complaining of a headache, stomach ache and has not gotten out of her pajamas all day. She had a good weekend. She felt good most of the day yesterday. Played with friends, but was tired by the end of the evening. She is due for a clinic appointment tomorrow to check counts and see if a transfusion is needed. Other than that, we are maintaining the course.
I apologize to all of you who check the blog daily as I have been both lazy and busy. Not sure if any of you are being affected by the Minnesota government shutdown. It affected our holiday plans. We usually go to Canterbury Downs to watch the horse races and fireworks on the 3rd, but the shutdown messed that up. That was about the only thing we had planned for the weekend. So we ended up doing odds and ends. Managed to stay busy most of the weekend. My dad arrived back in town on Sunday afternoon.
Aly is doing pretty good. She is at the point now where her blood counts are the lowest so today, she is lacking energy and is not feeling good. She is complaining of a headache, stomach ache and has not gotten out of her pajamas all day. She had a good weekend. She felt good most of the day yesterday. Played with friends, but was tired by the end of the evening. She is due for a clinic appointment tomorrow to check counts and see if a transfusion is needed. Other than that, we are maintaining the course.
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