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!