Tuesday, October 26, 2010

Day +573: Good Stuff!

It’s day +573 for our Max-Man and he continues to do fabulously. He has been battling a cold for the past two weeks or so and we have been on high alert to be sure he is getting through it alright but, so far, so good. He had a nasty cough and a lot of congestion but, he seems to be beating it all on his own!! Yippee!! The interesting thing lately has been that Max and Ellee tend to get sick and Alex does not, or at least not to the extent that Max and Ellee and affected. He has had a tiny bit of a drippy nose and that’s about it. Poor Max and Ellee have both had a rotten cough and tons of snot. Just shows you what an immune system does for you as you grow and it grows along with you. Alex’s immune system garden is in full bloom and knows what to do when a little cold germ comes around. Ellee’s little immune system garden is pumping away in both her body and Max’s and learning how to deal with little cold germs and the like everyday! The miracle continues!

The toughest part for Max about this recent cold has been that he has experienced some skin break-down on his upper lip again. This has happened three or four times now and it is very embarrassing for him. He hates it and asks me constantly when it happens how we can get rid of it. I have talked with the hospital at length about it and they think it may be a bit of graft vs. host disease (GVHD) of the skin that flairs when he is fighting off something. They assure me that we are treating it right and that as long as it is clearing up with our current treatment crèmes, it is alright. For Max, however, the scabs on his lip have been tough to handle at school. I don’t think the kids are saying anything mean. I just think they are asking him why it is happening and he is sensitive about it at this point. I think he doesn’t want to be different in any way anymore from his peers and having to deal with skin issues like that make him different and it’s just tough for him. It’s all part of the adjustment and really, good life lessons in dealing with little things like skin imperfections but, it isn’t easy for Max. Matt and I’s hearts break when he gets upset about it and cries, wanting the skin issues to go away. But, we are ever so grateful that these are the issues that we are facing now. They are so minor in comparison to where we once were with our little boy.

We have had lots and lots and lots of good and fun things going on around here. We have been busy, busy, busy celebrating birthdays as Alex turned 6 on October 13th and Ellee turned 3 this past Sunday, October 24th! Alex had a special little party before afternoon kindergarten on the day of his birthday with three good buddies and Ellee had a fancy princess tea party this past Sunday with four of her little girlfriends. We have also celebrated both Alex and Ellee with our families, of course. So, we have busy birthday’ing!

The walk for Children’s on October 16th was awesome. They had over 8,000 walkers down at Coney Island for the event! It was very inspiring and moving to see so many people motivated to come out and walk for such a great hospital. Max loved every minute of it! He enjoyed walking with all of his buddies that were there and loved riding the rides afterwards and eating the pizza and lunchables for lunch! The weather was perfect and it was just a fantastic day. Our team ended up being right about half of what it was last year with 53 walkers and about $5,000 raised! We were thrilled with that outcome and felt it was a wonderful contribution to CCHMC. Thanks to all of you that walked with us or donated to Max’s Mighty Mob. We plan to do the walk every year so, hopefully you all can join us at one point or another for it. It really is a great day.

In the midst of all of this fun, Max’s Meals…and More has just been exploding! We have had tons of great things going on and really can feel the momentum building behind the organization. We have launched a great new website for the organization at www.maxsmeals.org. Check it out when you get the chance. My brother-in-law, Ben Symon has done a tremendous job pulling it together for us. As you will see when you get there, we have a blog built right into the site as well as an events calendar. I will be updating both of these regularly as well as adding a volunteers page soon to detail opportunities we will have to help in the future so, check in whenever you can if you want to know what is going on with Max’s Meals…and More.

In addition to the website, we have an exciting new partnership to announce. Some of our good friends, Jason and Dena Hipskind, have a non-profit organization called Comfort Food that they started about 4 years ago in Indianapolis, IN after their youngest son, Auggie was treated for a very rare form of cancer. About a year and a half ago, the Hipskinds moved back here to Cincinnati and recently, Dena decided to launch Comfort Food here in Cincy too. Comfort Food's mission is very similar to ours but, the way in which they are fulfilling their mission is quite different. They work with Dream Dinners to hold "prep events" once a month in which volunteers prepare meals which are then flash frozen and distributed to families facing medical crisis through support organizations. In the past she has worked with organizations in Indiana such as The Wellness Community, The Ronald McDonald House and The American Cancer Society's Hope Lodge. Dena recently contacted me to see if Max's Meals...and More would be interested in becoming one of the support organizations that Comfort Food distributed meals through. I saw multiple advantages for us in this relationship - we would get these meals free of charge and would be able to actually take part in the preparation of the meals by volunteering at the Comfort Food prep events. So, I spent time working with the Infection Control department at Children's Hospital to be sure that Dream Dinners food would be acceptable to be served and ultimately got the approval that we needed to make this happen. We will be launching our new partnership with a meal down on A5 soon. If you'd like to learn more about Comfort Food, you can visit their website at http://www.comfortingfamilies.org/.
We are also in discussions with the catering arm of the Freestore, Foodbank (called Cooks Catering) to see if we can work with them to provide some of our meals going forward as well. Cooks Catering is an awesome arm of the Freestore, Foodbank and I think this relationship would be an absolute win-win for everyone involved. If you'd like to learn more about Cooks Catering, visit their site at http://www.cincinnaticookscatering.org/

I had an hour and a half long meeting yesterday with the Business Director for the Cancer and Blood Diseases Institute at CCHMC, the leader of the Social Workers and Child Life folks on A5 and two CCHMC folks from the Department of Development for the hospital. I had asked to meet with these folks so that I could go over the plans that we have been putting in place for Max's Meals...and More and be sure that we had the support of CCHMC moving forward. The meeting was very successful and I am confident that we have CCHMC and the Cancer and Blood Diseases Institute 100% behind us. They loved our mission and all of our goals and were extremely excited about our plans. Overall, it was a very worthwhile, important meeting and I am extremely pleased with the outcome.

The golf outing that Matt's dad, sister, Sarah and friends put together last Saturday was a blast and very successful. I think the outing raised about $1000 for Max's Meals...and More which is fantastic for the first try! I was another beautiful fall day here in Cincy and Max, Alex and Ellee had an absolute ball! The boys got to drive their own golf carts around and loved that, of course. Ellee enjoyed the playground down at Lunken and we all enjoyed the cookout afterwards. We are seriously thinking about doing something like this every year and making it very family oriented. I know the kids are going to be asking when the next Max’s Meals…and More golf outing is!!

We will be serving lunch on A5 this Sunday for Halloween too! The treat bag idea has gone over well also and we have received lots of donations for them. I'm sure they will be a hit with the families. We are assembling them tomorrow night. I’ll be sure to get some pictures of the bags and the lunch onto the Max’s Meals…and More site soon!

Life is good…so good! Incredibly busy and tiring but, so much fun and so exciting! I often still stop myself and marvel at the miracle that is continuing right in front of our eyes. Our little Max is really getting back to being himself and just relishing in every bit of life, thanks to his precious little sister, Ellee. Alex is loving being back to school and hanging with his buddies like 6 year olds should as well. All of us are healing, all of us are moving on and the future for ALL of us is looking brighter and brighter all the time!

Thank you to all of you that continue along on this journey with us. We love it when people tell us that they are still reading the blog and keeping up with the happenings in our lives. One of the greatest gifts to so many of us from this experience is the gift of presence – living in the moment and never taking anything for granted! We hope that by continuing to share our journey with you, you will continue to live life to the fullest, being grateful for your blessings and enjoying every moment you have with those that you love and care for, just as we are!

More soon…

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

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)