Monday, October 11, 2010

Day +559: The Fun Continues!

It's day +559 for Max and life is good! He continues to progress well, feel great and love life! At his last checkup, for those of you that know blood counts, his platelets (which are one of the greatest indicators of the strength of his engraftment with Ellee's marrow) were at 394. For a point of reference, when this journey began on January 12, 2009, Max's platelets were only 6! A normal level is anything above about 150. His other blood levels all remain good as well and he has even gone for six months now without receiving IVIG (IV immunoglobulin)!!! That means, also that since his stay for ear issues back in June, Max has not had an IV now in four months! HUGE progress! He did have to get a flu shot a week and a half ago at his monthly checkup and that was very traumatic for him, unfortunately. Besides that, he is just getting peripheral blood draws once a month and his inhaled pentamidine to protect his lungs while he remains on the cyclosporine. Amazing how far he has come already!

Max's miraculous progress leads me to the first reason that I wanted to update today...the walk for Children's Hospital this Saturday with Max's Mighty Mob! We are currently up to about $3,400 raised and about 40 walkers! While this remains far short of our lofty goals based on last year's turnout, we are proud and happy that Max's Mighty Mob is able to contribute this much to CCHMC. Max is soooooo looking forward to the walk on Saturday. He just asked me this morning before school how many people were walking with us. When I told him he responded, "with me right at the front of the pack!!" We cannot wait to see his smiling, happy, joy-filled face walking through Coney Island with the Mob behind him! I know it is going to be a very special and memorable day, once again, for all of us! Last year we could only dream of this day...dreams really do come true! There is still time to register to join us for the walk or to donate to one of our team members. Just click on this link: http://giving.cincinnatichildrens.org/NetCommunity/maxs_mighty_mob As we have said before, we know how valuable your donation is...it literally saves lives!

I also wanted to write today to invite you all to help with a fun, new little project that we have decided to try out with Max's Meals...and More (our new official name now)! We are going to be hosting a Halloween Luncheon for the inpatient families of the Cancer and Blood Diseases Institute and have decided that it would be nice to let each of the families take a treat bag back to their child's room to enjoy together. Thus, we are looking for donations of Halloween or Fall related items to stuff these treat bags with. They can be for any age from infant up through adult. Edible donations cannot be homemade but, must be store-bought and individually packaged (candy, cookies, etc are great). You can also donate toys, games or other fun items but just be sure that they do not include any latex. We typically serve 60 - 70 people at the meals but are looking to put together about 50 treat bags. I will likely do this again for our Christmas Eve Brunch if it is successful so, take that into account with regard to how much you might spend. If you would like to donate items for these treat bags, I will have a basket on my front porch beginning this afternoon that you can drop your donations into by Wednesday, October 27th. We will then gather a small group together on Thursday evening before Halloween (Oct. 28th) to put the bags together. If you are interested in helping to assemble the bags, please email or call me and let me know...we'd love to have you! I hope that this will be another small way to show the families stuck in the hospital on a fun day like Halloween that people are thinking of them and hoping to bring just a tiny bit of sunshine into their day.

Life has been very, very busy around the Meyer homestead lately! We are rejoining the "rat race" of "normalcy" with three young kids. The weeks are pretty crazy between the official launch of Max's Meals...and More, homework, housework, Matt traveling, Alex's soccer, Max's first communion classes and my volunteer work down at the hospital. But, we find lots of time for fun too! We recently visited a local pumpkin patch and took a great hayride (thus the pictures in this post...with cousins Ben and Audrey) and Ellee and I went to see the Disney Princesses on Ice last weekend with Matt's mom. We have been spending lots of time with friends and family, enjoying socializing again and reconnecting with so many people that we didn't get to see over our 18 months of isolation!

Max's Meals...and More is really gaining some momentum recently. We are hard at work on a website which should be launching within the next week or so and have our application for official non-profit status in process, hopefully to be approved within the next few months. I have been talking to several other organizations about potential partnerships and have been coordinating everything with the hospital to be sure they are "on-board" and fully behind us. Things are getting pretty exciting and we are beginning to feel that the potential to help inpatient families may be enormous. We have been strong belivers since the beginning of this venture in letting Max's Meals grow organically. We are always looking for "signs" that we are headed in the right direction and ready to shift directions if necessary. So far, things are pointing us forward and we are really feeling elated that we are able to give back and help others in this way. Lots more to come with regard to Max's Meals...and More!!! Just a reminder too - there are two upcoming fundraising events that we are greatly looking forward to: the golf outing on Oct. 23rd and the vendor fair on Nov. 6th. I have attached flyers for both to the email I sent out with this update. If anyone did not get those flyers and is interested in attending, please email me at kmmaemeyer@yahoo.com.

About three months ago, Max and I were asked to participate in a new program that Children's was trying out to tell our story, similarly to NPR's "Tell Me A Story" segment, for those of you that are familiar. We spent some time one day down at the hospital talking while they recorded our conversation. They also had a professional photographer take pictures of Max, Alex, Ellee and I. The following link is the beautiful production that they created for use on their website, etc: http://www.youtube.com/watch?v=gq-tHxGdU58 We are thrilled with how it turned out, especially that they featured the special story about Max at the end of it. Hope you all enjoy it too.

Thanks for continuing to check in on us through our blog and for your continued support, love and prayers. We continue to be eternally grateful for our blessings and enjoy every moment we have together. Hope to see lots of you at the walk this weekend!

More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.