Yet another challenge lies ahead...

We found out, during our clinic visit yesterday, that Aly's radiation treatment will not take place here in Minnesota.  We will have to travel and stay, wherever we decide to go, for 6 weeks.
I happened to ask about the radiation, as it is not too far away and we hadn't yet talked about our options.  There are different techniques and I had questions.  I wasn't aware I was about to open a can of worms I didn't know about yet!  A long stay away from home was never discussed at the beginning of Aly's treatment.
Children's Hospital now sends all brain tumor patients to hospitals that have what is called Proton Beam Therapy.  There are only a handful of hospitals in the U.S. that perform this treatment and unfortunately Mayo is not yet one of them.  They are in Boston, MA, Jacksonville, FL, Houston, TX, Oklahoma City, OK, Bloomington, IN, or Loma Linda, CA.  Our cancer doctor suggested Indiana, Massachusetts or Florida because Children's Hospital has the most experience with those 3.  She then said Boston would be difficult to get into because it is in a highly populated area.  So, now we have to decide where to reside for 6 weeks, who is going to stay with Aly and just an overall agenda!
The benefit of Proton Beam Therapy over regular radiation is there is less chance of long term side effects. With regular radiation, the radiation goes into the body, into the tumor and then exits and "scatters" which could cause harm to areas around the tumor.  With Proton Therapy, the radiation goes into the body, into the tumor and stays there.  It is also a more concentrated beam.  We, of course, are willing to do what is best for Aly.  It is just another unexpected bump in the road.  Aly has 9 weeks (3 sessions) of chemotherapy left and then there is a typical 3-4 week wait until radiation begins.  We are thinking it will be mid August - mid September that we will be traveling.  Just in time to miss the beginning of middle school!  Aly's not too happy about that.
Other than that, Aly is feeling pretty good.  Her blood counts were quite low yesterday, but not terrible.  They want to give her a blood transfusion on Friday morning just to give her a boost before chemo next week.  I'm still hoping she will be able to finish out the school year!

Truly Amazed

So, Aly revisited the eye specialist today and the above diagram pertains to her LE = left eye and RE = right eye.  This is the diagram the doctor created after our first visit, before the tumor was discovered.  I saw it for the first time today.  The shaded portions are where Aly could not see.  The white portions (including the small circle on the right eye) was Aly's field of vision.  How in the world was she able to function?  I am truly amazed!  To think that was all she was seeing.  No peripheral vision on either side and imagine how limited that was.  She knew no different!  She didn't realize that she couldn't see.  How does one's body compensate like that?  It certainly gives an explanation to many things!  

Today, is a totally different story.  We went back to see the eye specialist.  Aly has most all her vision restored.  There are a couple of spots in her peripheral vision that she is still having trouble with, in both eyes on the upper/outer sides of the eyes, but it is a miraculous improvement.  She still needs a little vision correction, but with an updated prescription she will now be able to see 20/20!  Can you say AMAZING?  This is at the halfway point of treatment!  Hallelujah!  May the good news continue!  

All's Quiet!

We are still going good here.  We attended cousin Carl's wedding and reception on Saturday.  It was lovely to see family we haven't seen for quite a while.  The reception was at the Science Museum, which was cool.  Aly wants to go back and revisit the museum.  My brother Jeff, from Texas, was able to coordinate a business trip around the wedding, so he was here and spent the weekend with us as well.
Aly continues to have some stomach issues, just doesn't want to eat and when she does, she tends to get an upset stomach.  We continue to give her formula through her stomach tube.  She lost a few pounds since she was in for her last treatment, so she is having to spend more time hooked up to the formula pump as the goal is to get 2000 calories into her everyday!  They want her gaining weight so she is better able to cope with the chemo.  She really never feels hungry and there is an extremely limited number of things that she says tastes good when she eats.
Other than that, she still feels well enough to attend school.  She doesn't have to go in for her next treatment until June 3rd, so hopefully she will be able to attend for the rest of the year, and enjoy her last day in elementary school!  In St. Michael, 5th graders are at the middle school.
We have an appointment with the eye specialist on Tuesday, as her sight has changed (for the better) and she may need a new prescription.  We have a clinic appointment on Wednesday to see how her blood counts are going.  Busy as usual!

Rally for Aly Day

All of Kevin's co-workers bought a Rally for Aly t-shirt and they are having a Rally for Aly day today.  They are all wearing the t-shirts and are going to have lunch.  How cool is that???

busy being busy

Aly is still going strong this week.  She went to school on Monday and Tuesday.  She is feeling good.  She's been busy playing when she gets home from school and hasn't slowed down.  It is good to see her doing so well after the struggles with the previous rounds of chemo.  Hopefully, it will be a much smoother road from here.  We have a clinic appointment in the morning to check blood counts and for a check up in general.  We are hoping that she will be up to attending cousin Carl's wedding on Saturday.  She has been looking forward to dressing up in a new dress that has been sitting in her closet for months, waiting for a special occasion.  It would be nice to see family members we haven't seen for a long time.

Super Saturday!

Aly is home today!  WOOHOO! WOOHOO!...a "normal" treatment, FINALLY!  We're doing the happy dance!  :)  Now all we need is a little sunshine!

Friday the 13th is all good!

Sorry I couldn't get on here yesterday...the site was undergoing maintenance.  Aly is continuing to do really well this round.  Two days down and one to go.  If she does fine with the last dose of chemo on Saturday morning, she will be coming home Saturday afternoon.  She has been giggling a lot.  It is so good to see that!  She's been so much more like the Aly we used to know.  She was having fun beating me in Uno today.  We actually were able to take a walk down to the hospital gift shop.  Monkeys must be popular because they had a huge selection of different kinds and sizes of monkeys.  She found 2 little Ty beanie monkeys.  One was a sock monkey and one was a little girl monkey with eyelashes and a cute purple flower on her head.  So her little monkey Tiny now has a girlfriend and another friend to play with (in addition to all the monkeys she's received as gifts!).
Before her surgery, to replace her stomach tube, the staff gave her two yellow socks which we turned into a shirt and skirt (which Kevin says is a kilt because Tiny is a boy) for Tiny.  So he now has the blue bootie hat and a yellow outfit.
Aly no longer has the tube that hangs out and drapes all the way across her stomach.  She now has a "button", which Kevin was teasing her about, because it looks like a valve on an inflatable.  He said that may be useful when she swims.  Air could be pumped in so she could float!  :)
Aly also met her fellow swimmer Maddie today.  Hopefully, as they get to know each other, they will have a lot to talk about.  We found out that Maddie has been having food cravings just like Aly.  Yesterday and today, Aly has been wanting bacon.  She's been ordering bacon sandwiches (BLT without L & T) for dinner last night, and lunch today.  For breakfast she just had plain strips of bacon!  The other things she's been wanting is chocolate and chewy, gummy candy.  Nice diet, right?  Good thing she needs as many calories as she can get right now.
The child life program, at the hospital, offered us 4 Twin's tickets, from the Miracles of Mitch Foundation, for the Sunday afternoon game, so our goal is to be at the game and nowhere else!  We haven't been to the new stadium, so that should be awesome!  Is it supposed to warm up at all???

Thankful for free time!

We are so thankful that we've had some wonderfully quiet days at home, no appointments, nothing on the agenda, freedom!  Aly spent most of Saturday hanging out with neighborhood friends.
I had a wonderful mother's day.  I was taken out for brunch and then Tom and I attempted to play some golf.  It started raining on the 2nd hole but we continued on until hole 9.  Yes, I went from sunburn on Saturday to soaking wet on Sunday.  But it was fun!  Aly and Kevin went to see Grandma & Grandpa Juntunen while Tom and I were golfing.  Then we met up to do some errands and when the sun came back out Tom and I finished our round.   On Monday, Aly went to school for the morning and today found me going on a field trip with the 4th graders (so I could keep an eye on Aly) to see Annie at the Children's Theatre.  Aly wanted to stay at school and take the bus home, so I know she's feeling really good.  Tomorrow, we have a clinic appointment and then a Child Life representative, from the hospital, is going to visit Aly's class and show them some things about what it has been like for Aly.  Then Thursday we will return to the hospital for round 3...I feel like this is a boxing match sometimes.  This round should only be 3 days, please pray that is all it will be this time!  She's already ridden the roller coaster.  I made a comment today about how hard it has been so far, and Aly said she didn't really remember much of it, so I am thankful for that.  

good news!

After all the trials and tribulations, finally some good news!  All the prayers and medicines are working!  Aly had an hour and a half long MRI session which showed that her tumor is much smaller than before we started this journey!  THANK YOU to God and all the guardian angels watching over us! And thank you to all of you who have continued to pray for Aly.
We had a very long day today.  We were at the hospital for the MRI at 9:30am.  She had a clinic appointment at 2pm.  During the clinic appointment her blood tests came back quite low.  Her hemoglobin count was around 7 and a normal count should be above 10.  She had also been shivering today, but not because she was cold.  So, they decided to give her a blood transfusion.  That added a couple more hours to our visit and thank God again, that there was no bad reaction this time.  We didn't leave the clinic until 6pm.  By the time we stopped for something to eat, it was after 7pm when we arrived home.  UGH!

Thursday

Yes Gail, no news is good news!  :)

Aly has been enjoying some time at home.  She has been feeling pretty good, tired at times, but wanting to be active at other times.  She has an appointment for an MRI tomorrow morning to see what progress has been made on destroying this tumor.  Then she has a check up appointment at the clinic following the MRI.  If she continues to feel good, we are planning to have her attend school on Monday and join her class for a field trip on Tuesday.
She is scheduled for the next round of chemotherapy starting next Thursday the 12th.  While she is in the hospital, she will be having the "mickey" stomach port put in.  This will take place of the tube coming out of her stomach.  It will sit flush against her stomach and look like a button.  Once this is in, she will be able to swim and hopefully have more freedom than what she has right now.  Aly's had swimming on her mind a lot lately and now wants to ask the Make a Wish Foundation for a swimming pool in our backyard.  It says right in their literature that they will not put in an in ground pool...maybe an above ground?
One of her swimming coaches called today and said that there is another swimmer who had a cancer diagnosis of leukemia.  Her name is Maddy.  Maddy is also getting chemotherapy treatments at Children's and we found out today, that Aly and Maddy will be in the hospital at the same time next week, so we will have to get them together.  That's it from here...  

Home again, home again...

We all made it home today, late this afternoon.  Aly is feeling pretty good, just tired.  Hopefully all will continue to go smoothly and she will be able to be at home for a couple weeks before round 3.