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.