We still have MANY kids' "Rally for Aly" shirts in youth medium - youth large as well as a few youth XL. If you need/want any please order through the Weebly site which is listed on the blog on the right side. If you are in the St. Michael area you can pick up from us or I can deliver. Otherwise I will gladly mail as well. We do have a limited number of adult size shirts to. Adult small - 2X. If you have any creative way to help me to deplete the inventory, it would be greatly appreciated!
Aly is doing good. Just got back from the eye specialist. She has dry eyes, which will hopefully be a short term side affect from the radiation. They have really started to bother her now that we are in the dry, cold Minnesota weather. (Another reason to move southward!) Her vision has not improved or gotten worse. She can see 20/20 out of her left eye, but it is limited to the inside half of that eye, so the half closer to her nose. The right eye is bad. She can see a little bit on the right side on the outer side of her eye. The doctor said that it shows more proof of where her tumor was and where the eye nerves cross is what was damaged during surgery.
We went for a short visit at school today. She stayed in her homeroom class while I visited with the nurse and then we came home for a while before the eye appointment. Tomorrow she is planning to do part of a day before going to the cancer clinic in the afternoon. Tonight she is excited for trick or treating!
Monday, October 31, 2011
Saturday, October 29, 2011
We made it home!
Just a quick note to let you all know we made it back to Minnesota safe and sound! It was 2 very long days of driving, but I'm glad we did it quickly! It is nice to have 2 days to unpack (yuck!) and get back into the groove here at home. We made it home on Friday evening about 9 pm. A yard full of "Welcome Home" signs, a scarecrow wearing a Rally for Aly shirt and streamers in our trees greeted us upon arrival. We also found beautiful flowers, balloons, and yummy treats inside our home. Thank you all, so very much, for the warm welcome! We are glad to be home!
Aly is feeling good. She got together with friends today. She also faithfully unpacked and organized her closet with the MANY things she brought home from Florida. She is just now going to bed after watching a movie and eating some popcorn. Somehow, I have to get her on track to get up for school this week! At this point, she is not showing any signs of slowing down, so I hope that continues. We have doctor appointments on Monday and Tuesday afternoon. We are meeting with the middle school on Monday morning and then she is planning to go for part of a day, on Tuesday, before an appointment. Then hopefully we'll try a full school day on Wednesday. That will be a treat! It's been a long time!
She lost 2 teeth yesterday, as well. One she worked on, for a long time, in the car! The other came out when she ate a fruit roll up. So, the tooth fairy had to show up, unexpectedly, for duty last night! Oh, joy!
Aly is feeling good. She got together with friends today. She also faithfully unpacked and organized her closet with the MANY things she brought home from Florida. She is just now going to bed after watching a movie and eating some popcorn. Somehow, I have to get her on track to get up for school this week! At this point, she is not showing any signs of slowing down, so I hope that continues. We have doctor appointments on Monday and Tuesday afternoon. We are meeting with the middle school on Monday morning and then she is planning to go for part of a day, on Tuesday, before an appointment. Then hopefully we'll try a full school day on Wednesday. That will be a treat! It's been a long time!
She lost 2 teeth yesterday, as well. One she worked on, for a long time, in the car! The other came out when she ate a fruit roll up. So, the tooth fairy had to show up, unexpectedly, for duty last night! Oh, joy!
Monday, October 24, 2011
Aly is pretty much packed, I am not!
The "vacation we never had" is almost over. That is what Aly named this trip. She was in and out of the hospital all summer long and feeling pretty miserable for most of it, so this was her warm weather break. I wish I could pack the warm weather, bright blue skies, sunshine and palm trees in my suitcase. I'm dreading the cold that awaits us at home. I could very easily find myself living here in Florida. I'd just need to convince my boys to join Aly and me!
Like anything else in life, this trip has had its ups and downs and there has been a lot to reflect on. I'm so proud of the way Aly has handled her visit here. She continues to be an inspiration. She handled it all with a wisdom beyond her years. The other day she and a boy, named Andrew, who is also getting treatment, started talking about why they were receiving treatments. It just so happened that they have similar issues. Anyways, they were talking in medical terminology about their diagnosis's and medications they take. An adult sitting nearby said, "you kids should not know so many medical terms at your young age." In some instances it is hard to keep in mind she is only a 10 year old. She did not waste time complaining about being away from home and friends. She made the most of every minute. She took in her surroundings and enjoyed the fun times to the fullest. She didn't let the struggles and hard times get her down, instead she continued moving forward. She was not afraid to explore her new surroundings. It, of course, made it easier that Florida offers so much, but nevertheless she jumped right in.
I've got to say that I am also proud of myself. Me, the girl who didn't ever want to travel far from home by myself. The one who never wanted to live alone by myself. I've grown and spread the proverbial wings (a little late in life, but whatever works!). I've enjoyed exploring and navigating on my own down here. I've overcome some fears.
I feel as if Aly and I have become much closer than we were before. For that, I am grateful. We've shared some wonderful experiences, met some wonderful people and I hope these will be treasured memories for her as they are for me.
Some people have asked what Aly's next step is, in this battle. A month or so from now, Aly will have another MRI. For the next 2 years, she will have an MRI every 3 months to make sure this dreaded disease stays away. In the meantime, she will need to just focus on healing from these treatments. We are hoping the tiredness, that we have been told could take place, will not be too overwhelming. We are hoping she can get back to being a pretty "normal" kid and attend school full time. Only time will tell! Other than that, we are hoping our focus will shift from cancer to other aspects of treatment. Typically, they wait about a year after chemo and radiation, to begin growth hormone replacement. She will continue to take medications to replace hormones not being made by her non functioning pituitary gland. Those will be lifelong things. We have an appointment, already scheduled, to see the eye specialist at home. I'm hoping he will have some guidance on helping Aly cope with her vision issues. She occasionally runs into things and always wants me to lead the way. She's got to gain some independence there. I'm hoping he will have ideas.
I want to say "thank you" to everyone for your continued support. Thank you for sending mail to us while we were here. It has meant so much to us! Thank you for the prayers and caring so much. We'll continue this story when we return home to Minnesota! Farewell Florida it has been fun (for the most part).
Like anything else in life, this trip has had its ups and downs and there has been a lot to reflect on. I'm so proud of the way Aly has handled her visit here. She continues to be an inspiration. She handled it all with a wisdom beyond her years. The other day she and a boy, named Andrew, who is also getting treatment, started talking about why they were receiving treatments. It just so happened that they have similar issues. Anyways, they were talking in medical terminology about their diagnosis's and medications they take. An adult sitting nearby said, "you kids should not know so many medical terms at your young age." In some instances it is hard to keep in mind she is only a 10 year old. She did not waste time complaining about being away from home and friends. She made the most of every minute. She took in her surroundings and enjoyed the fun times to the fullest. She didn't let the struggles and hard times get her down, instead she continued moving forward. She was not afraid to explore her new surroundings. It, of course, made it easier that Florida offers so much, but nevertheless she jumped right in.
I've got to say that I am also proud of myself. Me, the girl who didn't ever want to travel far from home by myself. The one who never wanted to live alone by myself. I've grown and spread the proverbial wings (a little late in life, but whatever works!). I've enjoyed exploring and navigating on my own down here. I've overcome some fears.
I feel as if Aly and I have become much closer than we were before. For that, I am grateful. We've shared some wonderful experiences, met some wonderful people and I hope these will be treasured memories for her as they are for me.
Some people have asked what Aly's next step is, in this battle. A month or so from now, Aly will have another MRI. For the next 2 years, she will have an MRI every 3 months to make sure this dreaded disease stays away. In the meantime, she will need to just focus on healing from these treatments. We are hoping the tiredness, that we have been told could take place, will not be too overwhelming. We are hoping she can get back to being a pretty "normal" kid and attend school full time. Only time will tell! Other than that, we are hoping our focus will shift from cancer to other aspects of treatment. Typically, they wait about a year after chemo and radiation, to begin growth hormone replacement. She will continue to take medications to replace hormones not being made by her non functioning pituitary gland. Those will be lifelong things. We have an appointment, already scheduled, to see the eye specialist at home. I'm hoping he will have some guidance on helping Aly cope with her vision issues. She occasionally runs into things and always wants me to lead the way. She's got to gain some independence there. I'm hoping he will have ideas.
I want to say "thank you" to everyone for your continued support. Thank you for sending mail to us while we were here. It has meant so much to us! Thank you for the prayers and caring so much. We'll continue this story when we return home to Minnesota! Farewell Florida it has been fun (for the most part).
Saturday, October 22, 2011
Saying Goodbyes...
Today, Aly and I took, what may be, our last visit to the beach. We stopped at a park that is called Huguenot Park. It is a beach camping area. It is at a spot where the ocean meets a water inlet. There, I got to drive my jeep on the beach. We parked and walked over to the inlet side. There was a huge ship coming into port so we sat and watched that go by. We also saw dolphins for the first time on this trip to Florida! Cool! After spending some time there we went back to our favorite spot, Little Talbot Island. We began our walk, on the beach, by stopping to ask a fisherman what type of fish he catches right off the beach. Unfortunately, I cannot remember what he called the fish. He showed us one that he had caught. It was a large white fish. I think part of the reason I cannot remember is because I was trying to digest what he said to Aly. He asked, "What is being done to her?" Adults can be thoughtless sometimes. We told him Aly was down here for radiation and that she had brain cancer. He asked how old she was and we told him. Then he says, "Well, 10 years old is too young to die." I'm like, "well that's NOT going to happen!" What is up with that?
We continued on down the beach. We came across many more interesting things today. Aly found a nice driftwood stick that we decided would make a good walking stick. We saw what we believed looked like a dead puffer fish. One of those spikey looking fish. We found some more amazing sea shells and just enjoyed listening to the surf on our long walk. On our way back Aly used her stick to trace her trail (dragging it behind her). At one point she wrote "goodbye Florida" on the beach. We continued on and actually came across 2 vultures picking at a dead bird. Yes, I'm talking real, bird type, vultures. I even confirmed it with the park ranger. Vultures are native to Florida. Finally, we came to the path we took from the car to the beach. I stopped to take a last look around. Then I turned to look at what Aly was doing. I guess she had one more message to write with her stick. It said, "No 1 fights alone." We continued on down the boardwalk to the car. Yes, it was a beautiful afternoon...
Thursday, October 20, 2011
Pumpkin Gaga!
Every other Thursday, the Proton Center has family night and tonight was their Halloween theme. They had a pumpkin decorating contest. We were not allowed to do any carving, for liability reasons, and all we could use were the craft items laid out in front of us. We were judged on the title of our pumpkin, the creativity, and overall design. There were about 10 kids with pumpkins. Aly and I were thrilled to win! I think Aly won it for us with her description of our creation. She said, "we named our pumpkin, Pumpkin Gaga, because like Lady Gaga, it is random and you never know what to expect." Proud mom moment! She really spoke well and gave the perfect description (I did not coach her at all!). Then she looks at me and says, "is my face red?" Yes, it was. She hates to speak in front of people which is why I was so impressed she did so well. Oh, that was fun. We won a bag of goodies...cookies, gatorade, goldfish crackers and some Florida Gator cups. It was a fabulous collaboration.
Our win made up for the cold that has gripped northern Florida. Our high today was 68 but there was a cold blustery wind. It is supposed to be the same tomorrow. We had to break out the jeans and sweatshirts! I know, it is not cold in comparison to Minnesota, but it was a shock. Yesterday, it was 80 when we went into the Proton Center. When we came out it had dropped to 68. In just two hours! We were there that long because there was a visiting artist and the kids were working on picture projects.
Other than that, Aly has 3 treatments left! They will be giving her what is called a graduation party, on Tuesday, when treatments are completed. She has requested a blueberry pie instead of cake to celebrate. A kid who doesn't like cake imagine that! Sorry about the font...I don't know what I did and I can't get rid of the highlighting!
Monday, October 17, 2011
Monday...
I forgot to mention on Friday's post that Aly was given the mask she had to wear for the first phase of treatment. I'm not sure why she wants to keep it. The child life person had suggested that she could take it home and decorate it or color it. Hmmm. A technician said he's seen someone put it behind the tire of their car and run it over. That sounds better to me! I wouldn't want a reminder of that.
We really enjoyed St. Augustine. It is a very historic town. I think we could've spent more time there and still not have seen everything it has to offer. While in St. Augustine, we checked out the Ripley's Believe it or Not Museum. A lot of weird artifacts and stories. Aly likes that kind of stuff for some reason. The tickets to Ripley included a ride on one of many of sightseeing trains that tour the city. That is where the picture of Aly blowing a train shaped whistle is from. On the train we decided what else we wanted to check out in the short time we had. We saw the Castillo de San Marco which is an old army fort built by the Spanish. It dates back to 1672 and is the oldest remaining European fort in the U.S. We were there in time to watch a reinactment of a cannon firing. They said that some of the cannons could shoot at a distance of 2-3 miles! I would never have guessed that. After visiting the fort we hopped in the car and drove to the St. Augustine light house. Aly and I tackled the climb of 219 stairs. It was a beautiful view at the top. But I think it took its toll on Aly. She wants to do so many things and wants to be "normal" that I think she pushes herself. It is hard for me to tell that she is feeling tired. I tried to get her to rest after each flight but she wanted to fly up to the top. We sat down after descending the stairs and her legs were trembling. On Sunday, she wasn't feeling good at all. She was complaining of a stomach ache and slept a good portion of the day. By afternoon she was feeling a little better. We attempted a short swim in the pool, but the water has turned colder. The evening temperatures have started to drop lower and with the shorter days, the water isn't warming as well. It was too cold for Aly. Grandpa and I braved it for a little while, but then we gave up. We relaxed the rest of the evening playing Skip Bo.
Grandma and Grandpa are heading home tomorrow. We have enjoyed having them here. We had MANY games of Skip Bo and UNO. Fun, Fun!
We really enjoyed St. Augustine. It is a very historic town. I think we could've spent more time there and still not have seen everything it has to offer. While in St. Augustine, we checked out the Ripley's Believe it or Not Museum. A lot of weird artifacts and stories. Aly likes that kind of stuff for some reason. The tickets to Ripley included a ride on one of many of sightseeing trains that tour the city. That is where the picture of Aly blowing a train shaped whistle is from. On the train we decided what else we wanted to check out in the short time we had. We saw the Castillo de San Marco which is an old army fort built by the Spanish. It dates back to 1672 and is the oldest remaining European fort in the U.S. We were there in time to watch a reinactment of a cannon firing. They said that some of the cannons could shoot at a distance of 2-3 miles! I would never have guessed that. After visiting the fort we hopped in the car and drove to the St. Augustine light house. Aly and I tackled the climb of 219 stairs. It was a beautiful view at the top. But I think it took its toll on Aly. She wants to do so many things and wants to be "normal" that I think she pushes herself. It is hard for me to tell that she is feeling tired. I tried to get her to rest after each flight but she wanted to fly up to the top. We sat down after descending the stairs and her legs were trembling. On Sunday, she wasn't feeling good at all. She was complaining of a stomach ache and slept a good portion of the day. By afternoon she was feeling a little better. We attempted a short swim in the pool, but the water has turned colder. The evening temperatures have started to drop lower and with the shorter days, the water isn't warming as well. It was too cold for Aly. Grandpa and I braved it for a little while, but then we gave up. We relaxed the rest of the evening playing Skip Bo.
Grandma and Grandpa are heading home tomorrow. We have enjoyed having them here. We had MANY games of Skip Bo and UNO. Fun, Fun!
Friday, October 14, 2011
Awesome!
Yesterday was a long day. On top of Aly feeling sick to her stomach on and off, we had a clinic appointment for blood counts, tutor time and her radiation treatment. The proton center called us yesterday afternoon and said they were having technical difficulties. The hard drive on the computer that runs the machines malfunctioned, so they said they had to "rebuild" it. That put everything way behind and we were lucky to be scheduled in last night. Unfortunately, it was a 10 pm appointment! But, it was better to have that than nothing at all. If we didn't get in yesterday, our journey home would be delayed, so Aly, the trooper, put her pj's on and took it in stride.
Grandpa Jack and Grandma Jan arrived on Wednesday for a visit. We have been busy planning what we are going to do this weekend. We are going to head to St. Augustine, on Saturday, which is about 30 minutes away. It is deemed the oldest city in the U.S. We received tickets to the Ripley's Believe it or Not museum from the proton center. There are also many other things to do and explore. A pirates museum, an old army fort, the oldest school house, an alligator farm, etc. We are still deciding what we are going to do and may wait until we get there to figure it out. Sunday may just be relaxation day. We may go back to Talbot Island or another beach location.
Aly and I are starting to look forward to going home. She told me, the other day, that this time has gone by fast. It has. We both have mixed feelings about leaving. Of course, we want to get home to family and friends, but we both said there are things left to do here and it will be hard to leave this fabulous weather. I'm not looking forward to the bare trees and cold weather back home. I'll have to print out pics of palm trees and bright blue skies I've taken and imagine being back here in the sun, I guess!
Sunday, October 9, 2011
I love "good days"...
I love it when Aly says, "today is a good day." We really enjoyed our day today. A little time with nature always does a body good. I've been wanting to go to Little Talbot Island, which is part of a nature preserve and a state park. It is totally undeveloped, pristine beach. Beautiful! It looked very much like a deserted island, with lots of tree trunks, driftwood and shells to check out. It was not the best day weather wise, but I am finding overcast skies make for a pleasant, cool day at the beach. It was, however, a very windy day, about 20-30 mile an hour winds, so swimming was out of the question. The surf was definitely churning. It's been pouring rain here and we got outside while we could. We were lucky to have a couple of hours rain free between the rain bands that have been coming in on shore. We saw approximately 8 other people the whole time we were there. It was so peaceful!
We found lots of things to look at. There were jelly fish washed up on shore and smoothly shaped driftwood. There were shells galore, although not many in one piece. We did score a complete sand dollar though! That was the best. Funny how something like that can create excitement! We also came across a coconut. Yeah, I'm not sure where that came from! A random coconut on the beach. Aly wanted to bring it home and try to crack it open. I was tempted, but I could just imagine some creepy crawlers coming along with us. There was a twisted pile of driftwood that Aly said would make a cool fort. Futher off the beach there were cactus growing and an abundance of palm trees.
On the way home we stopped at McDonald's. Aly ate a burger, there, for the first time in her life. To my shock she enjoyed it! She told me she was going to surprise Kevin by eating one when he comes back down. Sorry Aly, but that was just too funny not to share! We grabbed a Red Box movie afterward and stopped at Winn-Dixie to pick up groceries so we could make pumpkin bread. Mmm...love the smell of pumpkin bread baking! We ate some while watching Diary of a Wimpy Kid this evening. Yes, today was a good day!
Back to the medical stuff tomorrow...BOOOO...I did email Aly's cancer doctor back home. We got more information on the 2nd phase of radiation we are concerned about. She forwarded my email to the radiologist in MN and they both said the level of radiation Aly is set for has lower odds of possible problems. They said they did not agree with the 5% and their percentage is "lower" than 5%. I feel a little better about it, but of course still worry (a lot!). Please keep praying. Pray that this next step goes on without any problems. The only thing Aly can think about is she will finally get to lay on her back. Laying on her stomach, face down in that mask, has been uncomfortable to say the least. The appointments will be much shorter as well. She is not aware of the risks involved, she told us at one point that she doesn't want to know...
Saturday, October 8, 2011
5% Chance
My Facebook friends have already commented on my question of what 5% means to them. Kevin and I are struggling with what 5% means to us, or more specifically Aly. On Wednesday, Aly is to start her 2nd phase of radiation. In the second phase they are targeting the original tumor site. Yesterday, I sat down with the doctor so he could discuss this part of the plan. Aly's tumor was in such a sensitive area you can imagine what the worries are in treating that area with radiation. Being a doctor, he obviously had to share the risks involved. Being a mother, I obviously can only focus on those nasty risks.
There is up to a 5% chance that this treatment could cause paralysis as it is so close to the brain stem. There is up to a 5% chance that it could affect her vision more or cause hearing loss. The hearing loss is seen more in patients that have had chemo that affects hearing, which Aly has not had, so that is less of a worry. Nonetheless, when he first said 5% I didn't really think anything about it. Then, as it sunk in and I started thinking more, (I wish I was a quicker thinker sometimes, so I could ask questions right away!) I began to worry more. If you think of 5% as 1 in 20 people does that change your perspective? 5 out of 100 does not seem too threatening does it? If the weather man was talking about a 5% chance of rain I'd put my swimsuit on and head to the beach! Maybe I'm overthinking this...maybe not.
I don't want to be put in charge of these life changing decisions. I know hindsight is 20/20. It is hard not thinking about the surgery she had to remove the tumor that lessened her vision again. I know they had to know what they were dealing with, but it is still hard thinking about the fact that there was no cancer in what they removed. I wonder what would've happened if...
Anyways, like usual I'm going off track here. All along they have been giving Aly the "standard" treatment for her type of tumor. This standard treatment is based on years of study groups done in the U.S. This treatment is showing a 90% cure rate when this course of treatment is completed. What they don't easily share is what happens if you stray off this path. I wish I could see into the future sometimes. This is a difficult thing to deal with, a very difficult decision to make. We want Aly to be cured of this horrid disease forever, but at the same time we want the best quality of life for her too. UGH! My brain has been on overload for too long.
Yesterday, they also pointed out the red (I call it a racing stripe) that now goes down Aly's back (down her spine). I hadn't noticed it yet. She is also having some reddening on her head. All side effects of the radiation, similar to a sunburn, but they told me it may take up to 6 months to go away. How many times have I said, "I hate this,"?
I asked Aly if I could put her "waffle" face on here, she wants to share and let people know what she's going through as well, so here it is. This is what the mask does to her face and the indentations last for about 2-3 hours afterwards...
There is up to a 5% chance that this treatment could cause paralysis as it is so close to the brain stem. There is up to a 5% chance that it could affect her vision more or cause hearing loss. The hearing loss is seen more in patients that have had chemo that affects hearing, which Aly has not had, so that is less of a worry. Nonetheless, when he first said 5% I didn't really think anything about it. Then, as it sunk in and I started thinking more, (I wish I was a quicker thinker sometimes, so I could ask questions right away!) I began to worry more. If you think of 5% as 1 in 20 people does that change your perspective? 5 out of 100 does not seem too threatening does it? If the weather man was talking about a 5% chance of rain I'd put my swimsuit on and head to the beach! Maybe I'm overthinking this...maybe not.
I don't want to be put in charge of these life changing decisions. I know hindsight is 20/20. It is hard not thinking about the surgery she had to remove the tumor that lessened her vision again. I know they had to know what they were dealing with, but it is still hard thinking about the fact that there was no cancer in what they removed. I wonder what would've happened if...
Anyways, like usual I'm going off track here. All along they have been giving Aly the "standard" treatment for her type of tumor. This standard treatment is based on years of study groups done in the U.S. This treatment is showing a 90% cure rate when this course of treatment is completed. What they don't easily share is what happens if you stray off this path. I wish I could see into the future sometimes. This is a difficult thing to deal with, a very difficult decision to make. We want Aly to be cured of this horrid disease forever, but at the same time we want the best quality of life for her too. UGH! My brain has been on overload for too long.
Yesterday, they also pointed out the red (I call it a racing stripe) that now goes down Aly's back (down her spine). I hadn't noticed it yet. She is also having some reddening on her head. All side effects of the radiation, similar to a sunburn, but they told me it may take up to 6 months to go away. How many times have I said, "I hate this,"?
I asked Aly if I could put her "waffle" face on here, she wants to share and let people know what she's going through as well, so here it is. This is what the mask does to her face and the indentations last for about 2-3 hours afterwards...
Friday, October 7, 2011
nightlife
I've had countless nights of not being able to get to sleep. Yep, it is 12:30 am and I'm still awake, restless, so many thoughts going through my head. I'm not sure what it is that keeps me awake most nights. Maybe a combination of things. I have no distractions after Aly goes to bed. The creaky floors in the apartment above sound like they are in the next room. The lack of tv in the bedroom to put me to sleep. Could be a lot of things, but mainly I think the quiet darkness gives ample time to think. This week I've been thinking about the phrase, "God never gives you more than you can handle." Where did that phrase come from? I've got to admit here, that I am not a very religious person. I do believe there is a higher power and I do pray and believe that prayers are answered in some shape or form. But I've been questioning a lot lately. Not so much because I feel overwhelmed, I think I'm handling things quite well. I think about Aly and what she has had to handle. This week, all the lovely hair that had started to finally grow on Aly's head has fallen out again. This week, she has had days where she is extremely tired. Her blood counts are low and she's had some vomiting and an upset stomach. She's back to not wanting to eat and is loosing the pounds she just gained. I thought we were past all that! The nurse asked her if she has been taking a side of chemo while she's been here. No, it is not normal for her counts to be low although they say her "blood chemistry is good" and they don't feel they need to treat it. It is not typical for a patient to loose all their hair, typically it is just where the beam goes in. So, Aly continues to be the rare beautiful bird we've come to know. She's been the odds breaker all along, having the rare complications, the rare reactions to things. I keep praying that she will somehow have the odds go in her favor on something! It is hard to know how much these things bother her. She doesn't like to share what's on her mind. She gets upset when Kevin and I continue to ask her questions about how she's feeling or what we can do for her. There is a lot of quiet around here lately.
Now, don't get me wrong...Aly and I are also making the most of our time here, when she is feeling up to doing things. We've enjoyed exploring all that NE Florida has to offer. We were talking today about how we don't have a lot of time left here and we still have things we want to do. Unfortunately, the weather is not going to cooperate this week. There is a storm system that is supposed to dump a lot of rain for the next several days. So, we'll have to find activities indoors I think.
All I have to say tonight, (or is it morning)...is CANCER SUCKS. I have been sitting here thinking of a word or phrase for each letter in cancer sucks, yes that is honestly what is going through my head tonight. Just so many thoughts related to the lack of normality in our lives right now.
Please continue to send mail. Aly has been enjoying the visits to the mailbox as have I. Also keep Aly in your thoughts and prayers. Thank you!
Now, don't get me wrong...Aly and I are also making the most of our time here, when she is feeling up to doing things. We've enjoyed exploring all that NE Florida has to offer. We were talking today about how we don't have a lot of time left here and we still have things we want to do. Unfortunately, the weather is not going to cooperate this week. There is a storm system that is supposed to dump a lot of rain for the next several days. So, we'll have to find activities indoors I think.
All I have to say tonight, (or is it morning)...is CANCER SUCKS. I have been sitting here thinking of a word or phrase for each letter in cancer sucks, yes that is honestly what is going through my head tonight. Just so many thoughts related to the lack of normality in our lives right now.
Please continue to send mail. Aly has been enjoying the visits to the mailbox as have I. Also keep Aly in your thoughts and prayers. Thank you!
Monday, October 3, 2011
Another fun weekend
Kevin arrived on time on Thursday. We had time to eat some lunch and then Aly had an appointment with the Oncology team here to make sure everything is going good and check her blood counts. They did tell us on Friday that her blood counts are low. She is showing as being slightly anemic and her white cell count was low. They are not concerned at this point as they said that after receiving such strong chemotherapy it may take a while for your body to adjust and keep things normal. They do want us to have it rechecked this week and then they will make a decision whether or not to treat. They did tell us to give her iron supplements for now.
Aly's radiation treatments have been moved to later afternoons, between 4 and 6pm. It is nice that it is no longer in the middle of the day although traffic is not the best during that time frame. It does allow us to do more things during the day if we want to. The only bummer was that it delayed our trip to Disney. Her appointment on Friday was at 5pm. They are not flexible, at all, with their appointments. We got down to Orlando around 9pm. Aly and Kevin went for a quick swim then we hit the hay in preparation for a big day at Disney. On Saturday, we went to Animal Kingdom and Disney Hollywood Studios. We were given a medical assistance pass which allowed us access to the fast pass lanes. That was so fabulous. We were able to do so many things in a much shorter amount of time. It was very helpful that we did not have to stand in the long lines. I think that would've been too tiring for Aly. The weather also cooperated. It has cooled here a bit. It was in the low 80's all weekend. Perfect, except a little cool to swim in the evenings! Aly loved meeting many of the Disney Characters. She was wishing for more daring rides, but enjoyed it none the less. On Sunday morning we went to the Magic Kingdom. We spent about an hour right inside the front entrance. They have the princesses and Mickey and Minnie in a building close to the gate and they had many characters outside in the square. The highlight of the day was a little time spent with Mary Poppins. Aly had got in the line to meet her and was the last accepted in the line before Mary took a break. Since Aly was the last in line, she got to walk down the street with Mary and chat with her before her break. Mary told Aly that she had tea with Minnie Mouse and Minnie makes a very good cheese cake! After that we saw part of a parade and went on some rides. We tried out Space Mountain and Aly's favorite was Splash Mountain. She loved that Kevin and I were on the outside seats and she was in the middle of us. Kevin and I got WET and Aly did not! For some reason that was hilarious to Aly! :) Anyways, we enjoyed our time. We got back to Jacksonville around 5 last night. We went for a swim in our pool here. It was really quite chilly!
We took Kevin to the airport this morning and he is on his way home now! The time went by way too fast!
Aly's radiation treatments have been moved to later afternoons, between 4 and 6pm. It is nice that it is no longer in the middle of the day although traffic is not the best during that time frame. It does allow us to do more things during the day if we want to. The only bummer was that it delayed our trip to Disney. Her appointment on Friday was at 5pm. They are not flexible, at all, with their appointments. We got down to Orlando around 9pm. Aly and Kevin went for a quick swim then we hit the hay in preparation for a big day at Disney. On Saturday, we went to Animal Kingdom and Disney Hollywood Studios. We were given a medical assistance pass which allowed us access to the fast pass lanes. That was so fabulous. We were able to do so many things in a much shorter amount of time. It was very helpful that we did not have to stand in the long lines. I think that would've been too tiring for Aly. The weather also cooperated. It has cooled here a bit. It was in the low 80's all weekend. Perfect, except a little cool to swim in the evenings! Aly loved meeting many of the Disney Characters. She was wishing for more daring rides, but enjoyed it none the less. On Sunday morning we went to the Magic Kingdom. We spent about an hour right inside the front entrance. They have the princesses and Mickey and Minnie in a building close to the gate and they had many characters outside in the square. The highlight of the day was a little time spent with Mary Poppins. Aly had got in the line to meet her and was the last accepted in the line before Mary took a break. Since Aly was the last in line, she got to walk down the street with Mary and chat with her before her break. Mary told Aly that she had tea with Minnie Mouse and Minnie makes a very good cheese cake! After that we saw part of a parade and went on some rides. We tried out Space Mountain and Aly's favorite was Splash Mountain. She loved that Kevin and I were on the outside seats and she was in the middle of us. Kevin and I got WET and Aly did not! For some reason that was hilarious to Aly! :) Anyways, we enjoyed our time. We got back to Jacksonville around 5 last night. We went for a swim in our pool here. It was really quite chilly!
We took Kevin to the airport this morning and he is on his way home now! The time went by way too fast!
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