Merry Christmas

Wow, how easy it is to get caught up in Christmas preparation!  Actually, I have been caught up in working on one Christmas gift.  Aly's only desire, this year, was a "new" bedroom.  She has had the smallest of our bedrooms and since she couldn't think of anything else she wanted, I have been working to switch her bedroom with our guest bedroom.  I'm still trying to figure out why I didn't say I'd start the project after Christmas!  I'm happy to report I completed the gift last night.  The lower half of the room was a navy blue so with Aly's blessing I put chalkboard paint over that.  The upper half is an aqua color.  All the furniture has been moved and pictures have been successfully hung.  I think she is happy with the results.  She told me she slept good and said how quiet it is in her new room, so I'll take that as a yes.  Her old bedroom was right over our living room so she could always hear the tv and people talking.  The new room is in the front of the house and not over any rooms we always use, so yes it is quieter!  I still have to get a set of chalk so she can try out the walls!
So, now we will move on to other Christmas festivities!  I'm feeling weeks behind now.  We are going to make cookies today.  I have presents to wrap and some last minute shopping to do!  Not to mention what a mess my house is right now!  Hopefully I'll be able to whip it into shape during my days off.
Aly is continuing her road to recovery.  It was Exploratory Day at school, yesterday.  The kids had many activities to choose from.  Aly chose to watch Home Alone, which included activities with duct tape and then the other half of the day was swimming.  I got a call, from the nurses office, about 45 minutes before the end of the day, telling me that Aly was tired and wanted to come home.  I guess she had too much fun! Most days, when she gets home, she seems tired and doesn't want to do much.  I'm still waiting for her to feel better and get back to some activities.  I think it would make her happier.  I've been waiting for her to tell me she's ready to get back into the pool with the swim team.  She just hasn't had the extra energy.
I must say a belated "thank you" to the wonderful Middle School East staff who helped put together t-shirt and wristband sales.  I've placed an order for 141 shirts and about the same number of wristbands.  Thank you to all of the families who have made purchases.  We truly appreciate the support.  I'm hoping to get the shirts distributed before Rally for Aly day in January!
We feel we have received the best Christmas gift possible, Aly's good health reports.  We can only hope and pray that the cancer is gone for good and that Aly will continue to feel better as the days, months, and years go by.  We ask for your continued prayers, not only for Aly, but all who are battling cancer.  Please help support programs and organizations that support kids with cancer.  We have been fortunate to be on the receiving end of such programs and can tell you how important they are.
 
Merry Christmas to you all and may you find peace and joy this coming new year!    

indulging

I hope you will all indulge me a little.  I am missing the writing I was doing during Aly's treatments and all.  Maybe I'll have to start a diary or something that I can write in every day!
Today, I've been in a funky sort of mood.  Maybe because I listened to the KS95 radio-athon for Gillette's Children's Hospital on my way to work.  The story was about a 3 year old boy with a brain tumor, much like Aly's, on his optic nerves with vision loss.  I didn't hear the beginning of the story and for some reason his tumor is inoperable.  He is being treated with radiation to try to keep the tumor under control.  Anyways, it made me sad and brought up all the memories of what Aly has gone through.  I was almost happy that I had to go into work because I think I would've sat in my car and just had a nice cry!  I know my women friends can understand that!  :)
I am so very proud of both my kids.  Aly is such a trooper.  She still has been having days of being tired and it doesn't help that we drag her out to her brother's hockey games, like last night!  She is soooo happy he is a senior this year, so she knows there is an end in sight.  We received her report card, in the mail today, and a couple of her teachers had comments about what a positive role model she is!  She also got a, "great kid".  She sees that and says, "thank you Mr. O, but..."  Then she kind of trailed off on her sentence which gave me the impression she didn't know what that was all about.  So, I had to tell her, "you ARE a great kid!"
I've got to brag about Tom as well.  I know he won't like me doing so, but too bad.  It is a mom's right!  If any of you attend any of the hockey games, take a close look at the back of Tom's helmet.  I had some grey ribbon (brain cancer) stickers sitting around, which I had been using for making cards.  He said he wanted one for his helmet.  Every time I see that sticker on his helmet, my heart is warm.  Not many of you have seen my kids together.  All they do is pick on each other and antagonize each other.  It is a rare occasion when they show love towards one another.  This little sticker means a lot!  I told Aly, the other day, "your brother may pick on you more than anything else, but the fact that he put a sticker on his helmet shows that he cares about you a lot."
Anyways, I hope you are all finding some joy during this holiday season.  Usually you don't have to look too hard even if you are going through difficult times.  Thanks for letting me indulge...

Rally for Aly courtesy of Japan

https://www.facebook.com/photo.php?v=10150583269458852

Hello Everyone!

I am sharing this link, I hope you can all click on it and watch a wonderful video starring our friends in Japan who wrote a song "Rally for Aly".  They work with handicapped people in Japan and they have used Aly as an example of courage and strength in making it through a difficult time.  It is really amazing and touching to know Aly's story has traveled across the world!  Please comment and let me know if you are unable to view it.  I'd like to share it with as many people as possible.

Aly is doing good, by the way!  :)  She had a hard week last week with fatigue and only managed to do half days at school for most of the week.  By Friday, she said she was feeling back to normal.  I'm hoping the fatigue will stay away now, only time will tell!

Happy Thanksgiving!

On this Thanksgiving Eve, I want to take the time to thank all of you who have been following Aly's journey.  We are so thankful for everyone who has supported us through this difficult time in our lives.  Whether you supported us through positive thoughts and prayers, helped us by providing a meal, volunteering your time, or gave gifts, we could not have made it through without you.  We consider you our extended family and we have been very blessed to have you by our side.  

No matter what is going on in your life, currently, I hope you will all take time to be with family and friends, as much as possible, and enjoy the holiday.  Hug your kids and tell them you love them because you never know when a tragedy or life threatening illness will enter your lives.  It is so easy, in this busy world, to forget how precious time is.  

 We so grateful that Aly is back on the healthy list. We will be blessed to be without necessary doctor appointments for a few months now.  We will, however, be meeting with a specialist who will assist Aly with her limited eye sight.  I still need to call and make an appointment, hopefully they won't be too far out in their scheduling.  We received a review of her last eye appointment yesterday.  Below you will find her vision fields, the areas she can see out of each eye.  Very limited, as you can tell.  She is legally blind in the right eye.  I am amazed how well she functions, and sad that it went from bad, to great, to really bad.  I hope they will give us some guidance as to what will be most helpful to her.  

Hope you all have a blessed Thanksgiving!  We are looking forward to seeing most of the immediate family members, on both sides, tomorrow and Friday.  Best Wishes to You and Yours...

LEFT                                                                                 RIGHT

Two down.... Hallelujah!

Just got off the phone with the doctor and the results from the lumbar puncture confirmed that there is no cancer activity! I am so grateful she took the time to call on a Friday night! Very thoughtful! Words cannot express how thrilled we are!

one down, one to go...

Aly's MRI showed an ~~~ALL CLEAR!~~~ today!  Hip, Hip, Hooray!... We will have to wait until Monday for the spinal tap results, but the first hurdle seems to be cleared!

Even with that news, it seemed like an odd moment at the clinic.  I felt like I needed to be pinched or something.  I'm so happy and it is the best birthday gift ever, but at the same time the atmosphere was quiet and seemed so reserved.  Maybe it is like winning the lottery and it needs time to sink in???  It just seemed like thousands of balloons should've been dropped from the ceiling along with confetti.  Aly's doctor is very quiet and from her we just heard a simple, "congratulations."  Aly is much like her doctor and doesn't show emotions easily and maybe I was just a bit shocked because all along it seems we've heard good news and then they've found out they were wrong about something.  Maybe I need the reassurance from the LP results.  Maybe it is just the drain of the emotional roller coaster that I don't remember what normal is anymore!
I know Aly and I were both anxious to get the day over with.  We were there for the MRI at the time requested, 9 am.  The MRI was supposed to start at 9:30.  We were still waiting at 10.  Shortly after 10 they started.  Then, they ended up having to do part of it over so, the MRI wasn't done until 11:30am.  We were late getting over to the clinic for the LP (lumber puncture).  We didn't get out of there until after 1pm.  Aly and I were both saying, "come on, let's go," a lot!  We both felt irritated with the slowness, more so than ever before.  It will be such a HUGE relief to have this put on the back burner for a few months.  We do not need to return to the clinic for 3 months now!  She is still scheduled to have the IV port removed on Tuesday.
We are looking forward to having a good Thanksgiving as we truly have something to be thankful for!

Back to Monday!

Hi Everyone!

I just wanted to let you know Aly continues to feel good and is getting used to the big halls at that big middle school.  She just seems so small to be navigating those halls.  I worry about the fact that other kids don't realize that she cannot see off to her sides.  She seems to be doing ok and it helps that she gets a few extra minutes in the halls.  Kevin and the kids went shopping at Target, over the weekend, and I guess Aly ran into a pole.  She told Kevin she wasn't paying enough attention.  It is hard to see that struggle and I hope in time, with medical advances, maybe they will be able to help her eyesight.  I've been waiting for the eye specialist to contact me with the name of some people who may be able to help Aly adapt better.  I guess I will need to call him first and remind him we are waiting.
We had a good weekend.  Some good friends threw Aly a surprise, belated, welcome home party on Sunday.  She had no idea.  We told her we had to go pick up some things at Pete's house, and she kept saying, "why do I have to come along?"  We walked into their house and everyone was wearing the Rally shirts.  Very fun and very nice to see everyone!  Thank you for your support and the fabulous pasta meal!
After Aly's party, we went to join the crowd at Ditto's to help support Luke's family.  It was so crowded!  It was so fabulous to see the St. Michael/Albertville community at work again!  It is very heartwarming.  It was so busy, we were only able to buy a couple of raffle tickets while we were there.  I'm glad we stayed just long enough to see the Letelliers come in to a standing ovation.  We continue to pray for Luke and his family.  Please include Luke in your thoughts and prayers.  In just the brief time I saw him,  I could see his strength and courage.  I am still amazed at these kids who fight cancer.  They have something extra special about them.  I don't know if it is pure will, pure courage, or just the fact that they still have that kid mentality that believes they are still invincible.  I am just in awe.  They are beautiful kids with beautiful spirits.
Aly goes in for an MRI and spinal tap on Thursday.  Please keep her in your prayers as you go about your day on Thursday.  Please pray for clear scans!  Thank you!  
 

November!

Aly has made it through 2 full days of school without any issues!  YEAH!  I've made it through 2 full days of work without any issues!  YEAH!  It is good to be back in the swing of things.  I hope it continues!  I figured out today that I missed 447 unpaid hours of work during this battle.  I'm not sure how many Kevin has missed, but I was a bit shocked by my total!  I am happy I am back at work and helping contribute to the financials once again.  Definitely helpful!
Aly had a clinic visit on Tuesday.  Her blood counts were good.  They surprised us by taking out her stomach feeding tube during the visit.  There is a little balloon type thing that holds it in place and all they do is deflate the balloon and pull it out!  I had no idea that they just pull it out and let it heal.  The inside heals very quickly.  The outside I'm not sure about.  She's got a hole about the size of a pencil eraser, which I guess will gradually close.  No stitches, no nothing.  Weird!  I posted on Facebook that I have 2 kinds of formula Neocate Jr. Powder and Peptamen Jr. liquid to get rid of.  It is expensive stuff.  I'd love to find someone to give it too.  I have 4 cases of the powder and just about 3 cases of the liquid.  Aly could not tolerate the liquid and we had just ordered the powder right before she started eating well on her own.  Please let me know if you need it or know someone who could use it.  Otherwise I will donate to a food shelf.
On the 17th she will have an MRI and spinal tap to make sure there are no signs of the cancer returning.  Please say your prayers that they will be all clear!  That would be the best birthday present EVER for me!  If they are clear they will also be removing the IV port from her chest the following week.
The doctor also said that Aly's dry eye issue should be temporary, a side affect of the radiation.  She said it usually lasts a couple of weeks.  I hope so!
Please continue praying for all kids who are fighting this disease especially our local St. Michael kids, Luke and Maddy.  As I found out, by reading another mom's blog, September was pediatric cancer awareness month.  I had no idea, did you?  As she said, we've seen plenty of pink in October for breast cancer...we need to do more for the kids!  

t-shirts

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!  

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 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).      

 

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...

Pumpkin Gaga!

Aly and I are flying high after our pumpkin decorating contest win tonight!  Whooo-Hooo!  :) 
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...

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!

  

 

Awesome!

A big, huge thank you goes out to Mr. Huggins, his KORT class and Holly for organizing a mini Rally for Aly day!  Aly skyped into her homeroom class this morning to find all the kids and Mr. Huggins wearing the blue Rally for Aly t-shirts.  She was very surprised.  Thank you!  It means a lot to all of us that you'd take the time to organize it.

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!     

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...   

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...

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! 

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!   

Thursday

So you all know, I added a gadget that lets you track the blog by email.  It will send you an email whenever I put in a new update.  If you look on the right side, under pictures, there is a white box which says submit next to it.  If you enter your email address there you will be ready to go!

Aly and I are looking forward to seeing Kevin today!  He is staying for a long weekend.  I just wish Tom was coming with him too!  Tom is going to stay with a friend while Kevin is gone.  We are hoping to go to Disney, but still waiting on the tickets.  I am hoping to hear about the tickets today.  Otherwise we will have to come up with a plan B, which won't be hard to do, but it sounds like perfect weather is coming our way.  It has still be in the 90's and very humid.  There are thunderstorms on the way this evening and then it is supposed to be a high of 80.  Much better for spending a lot of time outside! 

Aly's treatments are going fine.  On Tuesday, they had a power outage and when the power comes back on they have to run tons of tests, so we sat at the Proton center for a couple of hours.  Before the power went out they had called and asked if we wanted to move our appointment up.  So we got there early just to find out they were running 1 1/2 hours behind!  At least it was the day they have an art lady there to do activities with the kids.  Aly enjoyed making a collage.  Anyways, there are still some days she feels really tired after treatments and some days she feels just fine.  Some days she says she can taste and smell the radiation and other days she says she doesn't.  I'm wondering why that is?  The other day she had sour cream and onion chips.  She ate one and then headed toward the bathroom and got sick.  She said the chip reminded her of the radiation taste.  Poor girl! 

I've got to go get Aly up so she can Skype this morning, then it will be off to the airport to pick up Kevin!  YEAH!

Fun filled weekend

We did a lot this weekend, and maybe over did it a little.  It has been HOT and very humid.  The weather has ended in rain each day this week because of the humidity. We've ended each day with a swim in the pool.
Grandma Jan drove down for a long weekend.  We went for a walk on the beach on Friday morning.  Aly said she didn't want to go in the water, but when we got there she was regretting that decision.  We took Grandma to the art/farmer's market on Saturday morning and then we went to see Spirit of America which is a free show that is touring around the country.  It is put on by the Army.  It tells "the story of our Nation through the eyes of the American Soldier".  It was rather interesting, and several Army bands played which is what we wanted to see.  The music was great.  At the same time it seemed like a recruitment outreach program.
Yesterday we visited Jacksonville Zoo (free tickets from Proton, nice!).  We went earlier in the morning, but still ended up overheated.  It is a very nice zoo, the best part was feeding a giraffe.  They have a deck that is up off the ground so you are at eye level with the giraffes.  We were given lettuce to feed them.  Giraffes have really long tongues! (I think they told us 1 foot!)  They curled those tongues around the lettuce and pulled it in.  Weird and cool.  It was just amazing being that close.  We came home for a swim, had some dinner and then also fit in a movie.  Glad we went on Sunday.  We found out it is $6 movie day on Sundays.  We saw Dolphin Tale.  It was a very good story.  I think we all enjoyed it. 
Today, Aly is tired though.  She didn't want to get up to Skype with her class, even with it being 9:30 here.  I think we'll have to slow down on the activities some, save the energy for Dad/Kevin's visit. 

Better

Aly said, "today is a good day."  I think mainly because after her treatment, the child life lady talked to us about all the tickets they can get for different attractions in Florida.  She is working on getting us FREE Disney passes.  We can also get passes to Universal Studios and there is a Ripley's Believe it or Not museum in St. Augustine.  Aly is thrilled.  Kevin is planning to visit us next week.  I think, if we get the Disney passes in time, we will make another trip to Orlando.  Something fun to look forward to!  Yes, I think we made a good choice in coming to Florida. 
Thankfully, this week she has not been extremely tired after treatments.  She is still a little worn out, but she's been able to stay awake and participate in evening activities, not that we've been doing much.  It is helpful though, that we can at least get out and about if needed.  She had her first visit from the tutor today.  They worked on Science homework.  I've asked them to focus on Science with Aly because she doesn't like science and I was never a fan of it either.  It is a difficult subject to explain at Aly's level so it is better to have someone else do it!  She's been really good about getting some school work done in the mornings, to my surprise.  She is really enjoying doing a power point presentation for social studies.  I still can't believe kids are able to do so much on the computer these days.  I keep telling Aly and Tom I didn't touch a computer until I was in high school and all we used them for was to make up programs to make the computer screen do funny things.  Do you remember that???  I think in college we could finally do some word processing on them.
Anyways, getting off track...We are settling into a routine and the only difficult thing now is getting her appointment time day to day.  We really can't plan any activities and have to be more spontaneous about our activities, so anything that takes more than a couple of hours is now planned for the weekends.

I want to take a moment to thank the STMA Sea Devils for their generosity in donating the proceeds, from the meat raffle, to our family and Maddie's family.  Coach Michelle and Coach Teri stopped by our house the other night.  I wish I was there to hug you both!  I owe you each one!  Thank you to friends, family and the caring STMA community who attended the raffles.  Thank you also to our wonderful neighbors and swim team parents/families who worked the raffles as well.  Please know  your efforts did not go unnoticed and we truly appreciate the financial assistance we've received, not to mention emotional and spiritual support.  Thank you to those who've sent mail to Aly and me, here in Florida, already.  It lifts our spirits each day we go to the mailbox and find cards and good wishes in there!  I know I've said it before, but I can't say it enough...there are many caring, wonderful people in this world.  Thank you so very much!

pretty good weekend

Well, after a shaky start on Saturday, we managed to have some fun this weekend.  Aly wasn't feeling well on Saturday morning.  We were supposed to meet some new friends close to the beach, but she was feeling sick to her stomach.  After a couple of hours she was feeling better.  I didn't want to impose after canceling the beach plans, so we came up with option B.  Jacksonville is a funky little city with lots of things going on.  This farmers market/art fair runs every Saturday during the summer.  It is all under the highway bridge in the pics above...what a cool idea!  Aly was proudly wearing her new "got proton?" t-shirt.  Gotta love that girl!  We had a lady come up to us and tell us the story about her niece that went through proton therapy.  An artist also offered Aly a cool piece of art if she would have her picture taken and be "kid of the day" on his Facebook page.  I will get the link on Facebook when he gets her picture on there.  I think we will need to build an addition on Aly's room for all the special gifts she has received.  We saw lots of cool stuff and enjoyed just walking around.
The weather has turned overcast and it looks like it will be that way for most of this week.  It is still supposed to be in the lower 80's.  Today it was really windy and not so pleasant, so we decided to go to the science and history museum.  For Aly's social studies homework, she is supposed to learn about the native americans that settled in Florida, so I thought that'd be a good place to start.  Of course, once we got back home I asked what she'd learned about them and she kind of shrugged her shoulders.  Good thing I took notes!  :)  Aly said, "there's always the internet."  Kids these days!  If they only knew what research used to mean!  Anyways, she seems to enjoy art and museums.  Her favorite part was a fake dig for dinosaur bones.  There was, what looked like, a sandbox and kids could take paint brushes and brush off fake dinosaur remains.  Aly said she'd like to have a job like that. 
Now we're back to Monday, more treatments and not so much fun.  My goal is to get Aly to do some school work in the mornings...wish me luck!

The good, the bad and the ??

Aly went to bed at 8:30 tonight.  I find myself wasting time on nothing good.  Started to watch tv, nothing good there on Friday nights.  Thought about pulling my scrapbooking stuff out, but then decided I didn't feel like doing that much work.  Lazy, but yet I want something to do!  Got on Facebook, another waste of time and then Kevin Skyped in.  We chatted for awhile.  We both have our frustrations to deal with.  He's trying to get Make a Wish to get a move on.  We are sadly disappointed with that program.  It seems that they should make it as easy as possible on a family going through such h-e-double hockey sticks, but instead it is as if we are doing all the work.  We are about ready to tell them to forget it, but we don't want to disappoint Aly, yet again.  I have a couple of other frustrations in the same, I shouldn't have to do all this, category.  You'd think that when it was confirmed that we were on our way to Florida, that all the paperwork necessary to get a tutor lined up here, would've been done.  The social work people here, just started the paperwork this past week, so we have yet to have anything started.  We were also looking for a possible flute teacher and I am the one having to contact people through calls and emails.  I just feel like by the time we get things set up, it will be time to go home.  I also fear that Aly is not going to feel good enough to do much now.  These treatments are making her really tired.  It takes us about 20 minutes to get home, and by the time we get here all she wants to do is sleep.  They suggested we give her benadryl to help her relax during the treatments.  I'm not sure if it is that, or the treatments or a combination, but she has fallen asleep every day.  I've had to wake her to eat dinner, which she doesn't want to do, then she wants to go to bed early.  We were having so much fun.  Last week she had mentioned this was like, "the summer we never had."  We were doing the things she's wanted to do all summer but hasn't felt well enough to do.  She had also been eating really well.  I mean, REALLY well.  She weighed in at 61.5 pounds on Wednesday.  She has never been 61.5 pounds.  The last time she left the hospital she was 53 pounds and not wanting to eat.  We were giddy that she put on that weight.  Now, these last couple of days, she's back to not wanting to eat.  Oh, I hate that everytime she's back to feeling good and more like the Aly we once knew, something else comes up that knocks her back down.  I would be so grateful if something could go easy, smoothly for once.  I hope she will feel good enough to do some things this weekend.
Aly has been using Skype to have contact with her homeroom, when she feels like it.  Someone in her class asked if she liked Jacksonville or St. Michael better.  She said, "I'd have to say Jacksonville."  She chose Jacksonville because it is warm and there is more to do here.  It has been in the 90's all week.  We have thunderstorms tonight and it is going to cool down to mid 80's!  :)  Sorry Minnesotans! :)    

Why, why, why...

I'm struggling with why today.  This has been a disappointing, trying, demanding day.  We started out at the opthamologist this morning.  We've been anxiously waiting to see an eye doctor in the hopes that they would tell us that Aly's vision would continue to improve and that her eye nerves just had to continue to heal after the surgery.  Well, today we were told that Aly's nerves look gray or white-ish in areas meaning they are damaged beyond repair.  Normal looking nerves should be a healthy pink color.  When they are gray it means the cells or neurons will no longer regenerate themselves.  Aly is back to her very limited field of vision.  They did a field of vision test, in which she looked into a machine with each eye and lights blinked on and off in different areas.  When she saw a light, she was supposed to press a button.  They started with her right eye, which is the worst of the two.  The test started and several moments went by without her hitting the button.  The nurse kept asking me if the lights were blinking, I could see them.  Aly could not.  More time went by and the nurse then asked Aly if she was ok and reminded her to keep blinking.  Soon the test was over and Aly had not pressed the button once!  The left eye was not as bad, but there were still many quiet moments.  She can see out of her right eye, but Aly explains it as "spotty".  The field of vision test showed that she could only see out of half of her left eye, close to her nose.  She has no peripheral vision.  Why?  Why did her eyesight return to near perfect, during chemo, only to have it yanked away again?  I cried and Aly's only comment was, "well that kinda sucks."  After her appointment we stopped for some lunch.  We had a long chat about this finding.  I tried my best to look for any positives.  Aly told me she is tired of hearing the saying, "everything happens for a reason."  She doesn't know why this is happening and I don't either.  The only blessing is that she is still able to read.  I can only keep praying that the radiation will not affect things further.  But it is hard to keep praying when you don't understand why.
After lunch, it was on to proton therapy.  We had a short chat with the doctor.  Once that was done, they took vital signs and then we saw nurse Annie.  Nurse Annie had something for Aly to complete so she could be a part of a long term study group.  The group follows patients who've had radiation so they can see if there are any late side effects down the road.  Anyways, to be part of this study group, Aly had to take a pregnancy test.  Yes, a 10 year old taking a pregnancy test.  I know!  Totally absurd!  You should've seen the look on Aly's face!  All I could say is, "What?"  During her doctor appointment yesterday, she was asked about taking drugs and drinking alcohol as well...When the nurse walked away today, Aly mentioned how she can't believe she's been asked these questions.  Again, Why???
Then finally we moved on to the treatment which was very trying.  They walked us into the radiation room.  I was able to stay while they started to get her situated, but then I was quickly escorted out.  The room was enough to make me cry again.  As you walk in it looks like part of a hollowed out airplane with a table in the middle.  Aly told me later, that the table slowly spins.  I thought it was the machine that was supposed to spin around her!  It was very daunting.  The technician tried to assure me that it looks worse than it actually is.  He said, "it is actually very relaxing."  Hmmm...wonder if he's tried it before?  They let me take a picture and I will get that on here.  They laid Aly on the table, on her stomach and put the mask molds on her face and back of her head.  If you can imagine putting something on your head where it confines you and doesn't let you move your head (at all) and then be told you will have to have it on for about an hour...yeah, I can't imagine it, I'd be going crazy.  Aly had a tough time.  She said her nose started to plug up and she couldn't breath.  Well, she couldn't open her mouth either with the mask on, so she had to grunt to let them know she was having issues.  They took a break, which lengthens the process as she has to be lined up perfectly, so they had to start again.  During the break it sounds like she started to cry and she later told me it was because she missed her dad.  So, what was supposed to be a one hour process, turned into two.  We did not leave the proton center until 3:30.  Why does this sweet girl have to go through this scenario?  Oh, it just boggles my mind.  I was getting nervous that it was taking so long.  At one point they gave me an update, but then another hour went by.  An elderly lady who was waiting for her husband noticed I was getting upset.  She came over and asked if I was all right.  She asked who I was waiting for and I told her a little about Aly's story.  She asked if she could give me a hug and she wiped my tears.  She also bought a teddy bear for Aly.  Apparently, every Wednesday, there is a women who sells apparel that have the proton center name and logo on them.  This time, she also had a teddy bear that had a t-shirt on and this nice elderly lady begged to buy it even after she was told it wasn't for sale.  She brought the bear to me and asked me to give it to Aly.  She said she hoped to meet Aly in the coming days.  There are many lovely, caring people in this world.  That made me want to cry even more!  I did my best to pull it together before Aly was done.  Of course, then she walked out.  The mask she has to wear is like a hard mesh, so she had these terrible indentations on her face.  I'll have to try to picture that as well.  I told her it makes her look lizard like and that she should write a kids book about a super hero lizard.  She is exhausted and complaining of a headache this evening.  Oh, I just hate that she has to endure all this!  WHY???

P.S. -  please add Luke Letellier to your prayers.  He is a teen boy who is also from St. Michael.  He is fighting cancer as well and he and his family did not get good news this week. 

Thanks!

Time Flies...

Hi Everyone!
Once again, I find myself behind on simple tasks.  Aly and I have been busy doing the necessary things to get settled here.  We keep thinking about things we don't have here, necessities or things we've forgotten to bring along and have done a lot of errands.  We also went downtown for the monthly art walk.  It was not as fun as we thought it would be as all the spots they had art were very spread out around downtown.  Much of it was also inside buildings and seemed hard to find.  The theme was about pets, so many people had their dogs along with them.  Aly did get her arm painted.  She didn't want to have her face painted.  She also found a cute hat.  Then Grandma Jan and Grandpa Jack came for a visit.  They arrived on Thursday.  We showed them around our apartment and then we jumped in the car with them and continued on to Sanford, Florida where our Japanese friends, the Watanabe's live.  They greeted us all, wearing Rally 4 Aly shirts.  Their son Kaz is in kindergarten and my folks attended grandparent's day for him as his grandparents live in Japan.  After attending Kaz's school on Friday morning, we continued on to Orlando.  We checked into a hotel near Sea World at about 1:30pm.  We went and had a late lunch and then visited Sea World.  We had a two day pass and I'm glad we did.  On Friday, things were not going our way.  Aly was so looking forward to riding a roller coaster, but she was one inch short of being tall enough!  What a bummer!  Then, at the end of the day, we sat down to watch the Shamu show and as we were waiting, a strong thunderstorm rolled in and just didn't want to budge.  We waited for 1/2 an hour but they canceled the show due to the lightening.  The park closes at 6pm, so that was our last opportunity to see that show on Friday.  On Saturday, things went better.  We made sure to watch the shows first.  We saw the dolphin show, then Shamu.  They also have flamingo shaped paddle boats that we took a spin in.  We finished the day with a water ride that got us wet, and a little souvenirs shopping.  By then, we'd all had enough walking and hot sunshine.  We got in the car and drove back to Jacksonville.  Yesterday, we took Grandma and Grandpa to the beach.  Grandpa helped Aly fly the kite she bought.  Aly also has learned to boogie board, so she showed them how fun that was.  At one point, a lady came up to me and handed me a shark tooth.  She had seen Aly (it is obvious Aly is going through medical issues with her scar on her head, and no hair).  She told me she saw Aly and she prayed that she would find a shark tooth just for her.  She said she then looked down and found one and she brought it to me.  That is the 2nd time while we've been down here that someone has given us a shark tooth.  I'd like to know the trick on finding them on the beach!  But it was very touching.  On Saturday evening, we went for a swim here at the pool, and a couple of men asked Aly what the scar was about.  Aly is an amazing advocate and is not shy to talk about the ordeal she's been through.  She told them she had surgery for a tumor.  They were very impressed and told her she was a very strong girl. 
Anyways, Grandma and Grandpa headed for home this morning.  Aly starts her doctor appointments and starts the radiation treatments on Wednesday.  We are still waiting to set up some tutoring while she is here.  I am anxious to get that going, but we are waiting to hear from others as usual!  Please keep your prayers going.  Please pray that this radiation will not cause adverse side effects.  We are concerned because it is such a delicate area they targeting.  Please also pray for continued healing of her eyesight.  It has not improved at all.  We are seeing an eye doctor on Wednesday.  I can certainly tell that Aly is more hesitant in her activities.  She always wants someone in front of her to help guide her.  She has no vision on the sides.  Yesterday, she had stopped and turned to talk to me and then she started moving again and ran into a post.  It is very hard to watch her struggle.
I'm sure she'd love notes or cards from anyone willing to send mail.  I know she is missing having kids around.  She wanted to call Mitchell today, but remembered it is school time.  It has helped to have the Skype and she has enjoyed talking with those who have it.  Talk to you soon!  Thank you all for the continued support!

Aly and I are slowly getting acclimated to Florida. I'm still glad we chose Jacksonville. It is a somewhat smaller city and it has been pretty easy to navigate even though I've made some wrong turns here and there (as Aly will attest to) it is easy to find your way back. We have been starting to explore the area and are looking forward to doing more. On the first Wednesday of each month they have what is called an Art Walk in downtown Jacksonville. I guess there are several art galleries downtown that open their doors as well as live entertainment like jugglers, musicians, etc. that perform. We are looking forward to checking that out tomorrow. Just a mile away from us is the huge shopping area I mentioned already. Tom called it Arbor Lakes on steriods (for those of you not in MN, that is a shopping complex in Maple Grove not far from our home). I need to go back and at least window shop. They have a Gucci store and many other designer names as well as the typical big stores like Target, Costco, Joann's, and groceries.
Our "home" here is a 2 bedroom apartment condo. It has an open area as you walk in the door which includes an eating area, living area and kitchen. The bedrooms are on opposite sides of the unit and each has its own bathroom. I have a little built in desk area in my bedroom. We are on the 2nd floor of a 3 story building. We had a struggle finding a place available with such short notice. We looked at VRBO.com, sublet.com, corporatesuiteshoppe.com not to mention pages and pages of individual renters which the hospital here gave us. We kept coming up empty handed as most places were rented out for September and October. We had a few places set to tour last Saturday and Sunday. Another obstacle was the holiday weekend! On Friday though, the corporate suite shoppe called us and said they had something available. We had called them several times but they kept telling us they had nothing in our price range. Well, I guess things change when the 1st of the month comes around and you have an apartment sitting empty! Of course, that same day we received 2 or 3 other calls from people telling us they have something available. Funny how that works! I had even talked with a nice guy who wanted to be sure we had found a place. I had called him earlier in the week and his place had been rented already. He had left me a message saying how he has 3 little girls and he wanted to be sure we had a place to stay. He invited Aly and I to join his family when they go to the beaches on the weekends! That reminds me, I need to call him back and thank him.
Anyways, the development here is gated, although I have yet to see the gates closed! There are 8 or nine apartment buildings that surround a small pond. We have a nice pool, a club house and a dog park. I miss my dog! There are many dogs here. There is a sign by the pond that says watch for alligators! We were told that a water mocasin snake lives in it! A walking path circles the pond. As we walk down the path, geckos scurry across the cement. It is kind of creepy yet cool at the same time. Also, at one point the path gets close to the pond. There are small fish in the pond. They have gotten used to being feed by people who live here. As you walk down the path, the fish actually follow you, waiting for you to throw them food. Aly and I fed them some bread today. They look like little piranhas going after the bread!
Aly and I are doing pretty good at keeping busy. The challenge is that there is so much to do, but at the same time we have to keep our expenses low so I am trying to find free activities like the art walk! We've been visiting the pool area almost every day. I'm hoping we'll get to the beaches more now that we are settled. We have figured out how to get the Skype working so Aly now has contact with friends and family and even her homeroom at school. We are planning to Skype into the homeroom when we can and then do some other schoolwork in the mornings. Hopefully that will leave the afternoons for other things. We are still waiting to get her treatment schedule to see what else we will be able to fit in. Today we located a movie theater and saw The Smurfs. It was cute, not my favorite kids movie, but Aly enjoyed it and that is all that matters. My parents are coming for a visit on Thursday. They have some friends they are planning to visit in Orlando, so we are going to go down there with them for the weekend and visit Sea World. I am hoping also, that we will find some kids in this complex that Aly could play with. We saw a couple of girls out playing one day, but we didn't make it out to introduce ourselves. It may be tricky now that school is in session, but that's another reason to keep visiting the pool!
So far things are going smoothly. We did have one minor crisis when I did a big shop at Target for essentials. My check card and credit card were denied. It turns out that our bank put a block my cards as well as Kevin's because we were spending money down here. Apparently, we should've notified the bank that we were traveling to Florida. They told us a lot of fraud takes place in Florida. After wanting to strangle someone for putting us through a lengthy automated system and then ultimately getting disconnected on the phone, we finally cleared it up and they removed the block so I could make my purchase. That is a scary feeling though!

holiday monday

Here is the picture I took of the first mask being made for the front of Aly's face.  They would only let us stay in the room long enough for us to watch this one, then they asked us to leave so they could complete all the other things they needed to do.  I am not used to having to leave.  At Children's we are able to stay with her most of the time. 
As I mentioned in the last post, besides this front mask they also took a mold of the back of her head.  She had to make an impression of her back in a foam piece as well, so she will lay in one position during treatments.  This is crazy stuff!

The boys left for home today.  I'm glad it was a very early morning flight because I was too tired to think about how much I'll miss them.  Although when I got back in the car after saying goodbye, Aly's comment was, "I'm not surprised you are a little teary."  But now, of course, I am thinking about that.  I hate that this is all happening during Tom's senior year.  Of course, I wish none of this was happening at all and Aly was healthy again.  It just seems like our total focus has been on all things medical and I sometimes feel that Tom is getting slighted in the attention department.  I know he is gaining independence and will soon be gone from under our wings so it is difficult to be missing this time away from him even if it is not a long period of time. 
I have the challenge of keeping Aly and myself busy during these weeks.  Aly already asked what we are going to do today.  I'm hoping this challenge won't prove to be too difficult.  At least we have great technologies these days to help us keep in contact with family and friends far away.  This week, before treatments start will be a good opportunity to have Aly Skype into her homeroom.  I'm hoping that will help her feel like she is still a part of the middle school community.  We also received some science homework before we left.  She will have appointments to set up with other doctors as well.  They want to do a baseline of her hearing, vision and cognitive abilities so they can tell if the radiation is affecting her in anyway.  Her vision is still impaired, by the way.  They are still hopeful that it will improve more as healing continues.  I am anxious to see an eye specialist again to get their opinion.  That is one thing we couldn't fit in before we left for Florida.  At the same time I am so worried that radiation will negatively affect things.  I want Aly to have the best quality of life she can.  It is not fair that innocent kids have to go through this horrible disease. 
Ok, enough of that.  We found out our address.  It is a little deceiving as we are not right by the sea.  It sounds like a lovely beach front address, but most addresses are like that down here.

4790 Seascape Way #206
Jacksonville, FL 32224

Now we just have find out where the mailbox actually is in this complex!  :) 

getting settled

Just wondering if this craziness will ever settle down, or if this is our new life as we now know it.  We made it down to Jacksonville in one piece.  I guess we will have a little less than 2 months to get over the drive and get ready to do it again!  We found housing.  It is about halfway between the beaches and the hospital.  It is a nice area.  A huge shopping complex, somewhat like Maple Grove, not too far away.  We also have a nice pool in the complex, a great bonus for Aly.   

We stayed in a hotel on Thursday and Friday night and moved into our new temporary home this morning.  For those of you on Facebook, the picture I posted of the cool bridge and buildings was our view out of the hotel room.  That was downtown Jacksonville on the St. John's River. 

We had initial appointments with the Proton Therapy Center on Thursday and Friday.  On Thursday, we met Dr. Indelicato.  He was a very nice and young looking man.  Kevin teased him that he must get many comments about Doogie Howser, MD.  He discussed with us all the pros and cons of radiation treatment and of course, as usual we had to hear all the things that "could" happen.  The standard of treatment for Aly's type of brain tumor is to radiate the whole brain and spine as well as giving a "boost" to the original tumor sight.  We've heard good stories and bad stories in regards to radiation.  We can only hope for the best and pray that the side effects of the treatment are minimal.  It is difficult that this is yet another battle for Aly to go through.  She was finally getting her energy back and feeling more like herself only to start down another unknown road. 

I will have to take a picture of the proton center.  It looks a lot like a movie or tv set to me.  Inside it seems like some sci-fi experiment.  Thursday included discussions with the Dr. and consent for treatment.  I must say again, thank God for health insurance!  Anyways, on Friday they did several things to get Aly ready for treatment.  I will have to post a picture I took of a mask/mold they were making of Aly's face.  They make mesh like molds of the front and back of Aly's head so that she will be unable to move during the radiation treatment.  She said it felt like they placed a warm wet rag on her face.  It was some type of mesh material that hardened as it cooled.  They also had to give Aly permanent tatoos on her back.  They are tiny and look like freckles but there are 8 or 9 of them.  All to help guide the beams where they need to go.  She said it didn't hurt at all.  It was that choice or having to walk around with big black Sharpie X marks on her back with plastic bandages that we'd have to replace everytime they got wet.  We didn't want to interfere with any swimming she wanted to do, so with Aly's permission we chose the tatoo route.  She is such a brave soul.  It is hard to have to watch her go through all these things.  She also had to sit through a CT scan, again!  The people helping her out told us she was the model patient.  They couldn't believe how she laid so still and took everything in stride.  The actual treatments will start on September 14th.  They will be doing 30 treatments so I am figuring she will be done on October 26th.  Her goal is to be home in time for Halloween.  We already are working on her costume.  I hope she is feeling good enough to enjoy it. 

ready or not, here we go!

I am totally feeling unprepared!  I've never been away from home for 2 months.  In college, even though I lived at the dorms, I was only a short drive away from home.  I don't know what to bring, what we will need.  At least the boys will be at home here and they can send things if we need them.  
We are still trying to finalize a place to live.  I'm hoping it will all come together today!  I'm surprised realtors weren't working on the weekend.  We've been anxiously awaiting calls that never came.  We left several messages with no response.  Very surprising!  It sounds like it is a hot market down in Jacksonville.  We will be lucky to find a nice place under $2000/month with the short notice we received.  Yeah, I know.  This is not for a house by any means!  It is a small apartment condo.  It is however, fully furnished down to the eating utensils and linens for the beds, so we will not have worry about that.  I'm not sure how they expect such a quick turn around!
Today involves last minute details, finish packing, loading the car, etc.  I also need to meet with Aly's principal to firm up some plans regarding school.  We are expecting to be down there until the last week in October!  I need to try to squeeze in a last minute meeting with Tom's counselor as well.  Too much to do!
We wanted to stay long enough for Aly to attend the middle school open house and get her picture taken so she'll be in the yearbook this year.  We will head out bright and early Tuesday morning.  We are planning to make it to Indianapolis Tuesday night, Asheville, North Carolina on Wednesday night and we need to be to Jacksonville by 2pm on Thursday.  Fun, fun!
Aly looked so cute for the big orientation day this morning!  We were greeted at the door by one of the social work staff members.  She was very kind and said she'd make sure Aly was in good hands.