Ally and family had a pretty good weekend. Overall, she still seems to be feeling good. We have come so far in the process. At the clinic on Friday, one of the nurses told us that she should have some new families come talk to us. So that they can see that it DOES get better. We really struggled for about the first 6 weeks, but it is starting to become our new normal. It did get better, like they said it would. I completely struggle with thoughts of it getting worse again. I pray and pray that it won't. They are testing her MRD again around September 1st. I have never been more scared of anything in my whole life. One of the doctors told us if it comes back high, we are looking at a bone marrow transplant. And those are very risky and I don't want to do it. So, my coping mechanism is just to block that thought out. I try not to worry about it until I have to. I have learned that tactic over the last year and a half. I was a major worrier before, and now I am not. If I still behaved like I used to, I would not be capable of running this family. I would probably be locked up somewhere. So I just can't do it, I won't. That's not to say that I am not scared or I don't think about it and I am most definitely saying 101 prayers a day about it. I just can't let it bring me down.
We did a few "normal" family things this weeked. Ally's ANC was pretty high (880) which means she can be more exposed to the public, etc. She had been wanting to go to Build a Bear to use a gift card that she got from Jerad's cousin Jill (thank you so much) so we did that. She absolutely loves that place and it brought huge smiles to her face (and Evan) and it always warms my heart a little bit. I don't want her to grow up. I want her to love her stuffed animals and all the little clothes for them. We also drove about 30 minutes to Centerville to go to our friends the Sidwells new home. It is really weird, but I haven't been to Centerville since mid May. This is a place I would normally go to once a week. I just haven't left the confines of more than a 10-15 minute drive except for the zoo. I am finally feeling comfortable enough to be a little farther from home. It is just so weird how my life has changed. I remember feeling dread if my child were sick for a week. A week used to be so long! Then I remember thinking that Ally had mono, and I was worried she would be stuck in the house for a month. A month! What I would give now to have a sick child for only a month. Now I have two more years staring me down. And that is only if things go as planned. It is a bit exhausting to think about.
I have to say a special thank you to my new friends at Grace Crossing. They arranged to bring us meals everyday last week. Everyday I got the pleasure of meeting a new person and having a meal made for our family. We are really getting back into the groove a little bit, I feel like I could make dinner for sure, but people are wanting to help us so I let them. And getting to the grocery still seems very hard. So thank you. Thank you. A hundred times, thank you.
Finally: NEWS FLASH. I think I have finally got our webpage set up for the Light the Night Walk. The link is below. This is the spot where you will sign up if you are planning on walking with us on the night of October 1. Click on the yellow button that says "Join our Team Now" That way I will know who all is walking with us. This is also how you can submit your fundraising dollars and make sure they are credited to Ally's Army. You can see that we have actually already raised some money, and I have more here to send in. If you do something to try to raise money (and I have talked to lots of people who are doing there own things for her...parties, sales, working for her, etc) you can just submit your donations out here. It will all be reflected on the page and we can see how close we are to our goal as a team. I think if you raise $100 you earn a t-shirt, if you raise $250 by the end of August you get a gas card, etc.
You can also just donate to our team. A flat donation by hitting the red button. You can email it out to friends/family and get donations credited to your name that way too.
http://pages.lightthenight.org/soh/Dayton09/AllysArmy
Even if you have no donations at all, I want as many people as possible to walk on October 1. I don't care! I just want people there to support our little girl. She has no idea the masses of people that are praying for her. I can tell her...but when she sees it with her own eyes...that will make a difference.
Thanks for all those who are walking. Thanks to everyone who faithfully reads about our journey. Thanks to all those who are praying. We are blessed to have an army behind us.
Sunday, August 9, 2009
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Just joined the walk! There will be so many army members there that night!
ReplyDeleteI am heading over to the new site right now. I only wish I could actually walk with
ReplyDeleteyou! Please know we will be there in spirit and let the fundraising begin!
~Love~
Amanda
Janel,
ReplyDeleteThanks for the post- I was hoping it was a good weekend, and am thankful for that. For everyone that isn't close to you- tell them to check out the lightthenight.org website, and they can walk where every they are. Our local one is accross the Brooklyn Bridge on October 15th...I'm going to be one svelt 7 month pregnant woman that night!
I'm really glad that you are able to calm your worrries and not dwell on them. That's a big victory! One day at a time- sometimes, one minute at a time.
Here's to this week's counts staying up.
I believe too that don't worry about it until you have to, it will keep letting you enjoy what is in front of you now.
ReplyDeleteI hope to be able to walk with you, still ironing out details of Bryce's birthday (10/1 also) and when out of town guests will be here.
So glad to hear that Friday finished out okay, did she ever get her soup :)