Thursday, April 29, 2010

Day +393: One Fantastic Vacation

It's day +393 for Max and we have been back home here in Cincy for just about 24 hours now. We had an absolutely fantastic, memorable vacation. We have over 400 pictures and videos of all of our adventures to share with everyone so, I have posted them to Snapfish and put a link to the right of this post on the blog if you are interested in checking them out. I have included a few of my favorite pictures from the 11 days of fun in this post as well.
I could go into volumes of detail about everything we did but, that would equal the enormous amount of video and photo footage that I have and no one would be able to read it all! So, instead, I'll just cover the highlights:

Give Kids the World Village - an AMAZING, enchanted place filled with things kids love. They have a free putt-putt course, train rides, boats you can drive in a little pond, a sweet basketball court (as the boys put it), a beautiful carousel, free ice cream from dawn til dark (open from 7:30 am til 9:30 pm - yes we did have ice cream for breakfast a few times), a golf cart that delivers breakfast goodies and cookies to your doorstep if you want them, presents secretly delivered to your villa each day, etc. In addition, they have numerous activities and entertainment for the kids each day and evening. We enjoyed visits with Spongebob and Mickey & Minnie, horseback riding, a Winter Wonderland parade and a game show, all at the village. What makes this place the most amazing, however, is that it is almost entirely staffed by volunteers! They have about 140 people that work for the village and over 6000 volunteers that help keep the place running. It was truly a magical place to stay.

Disney - we spent three days visiting three of Disney's fabulous parks - Magic Kingdom, Epcot and Hollywood Studios. The boys favorite ride by far was Test Track in Epcot (a ride created by GM where you become the test dummies in a car they are getting ready to sell). Disney treated Max very well. They gave him a special pass which enabled us to get onto rides as quickly as possible, generally without waiting in line more than about 10 minutes, tops. Because of this pass, Max and Alex rode Test Track 12 times with either Matt or I! You could never accomplish that without this special pass in just 3 days! Most people wait for about an hour to ride it one time! Thus, Max felt very special. We also greatly enjoyed many other things at Disney including Space Mountain, the Tower of Terror, Thunder Mountain Railroad, multiple parades, Ellee and Alex's visit with three princesses, the Country Bear Jamboree, the Stunt Show at Hollywood Studios, etc. We all agreed that Disney is really a top notch place. They just do everything so well and make it really a magical experience for everyone. Matt and I enjoyed our visit as much as the kids did and we all can't wait to go back some day in the future.

Sea World - this is not the park of my childhood! I was quite impressed, to say the least. We went to a dolphin show, a walrus show and the Shamu show during our one day at Sea World and we LOVED it! We thought we would have a quieter day at this park so, we sandwiched it in between our Disney days but, we were quite surprised at how much there was to see and do at Sea World. We could have spent three days there! The shows are really impressive these days. I remember them from when I was a kid and they were great then too but, now they are just amazing. The animals do tricks that are incredible and everything is choreographed to music and other imagery. They were highly entertaining and enjoyable. Sea World also has tons of rides and other animal exhibits too. We only had time for one ride, a combo water flume/rollercoaster called Journey to Atlantis. Max loved it and would have gone on it 12 times if we had time to do it!

Marco Island - we spent the last 5 days of our trip visiting my Grandma in Marco. It was so relaxing and such great quality time with her. She turned 90 in February and is truly a remarkable person. She still lives on her own in a gorgeous home right on a waterway on the island. She drives herself around and is essentially totally independent. Matt and I said to each other several times that, while we have always known that my grandma was an exceptional person, we just could not get over how fabulously she is still doing, at the ripe old age of 90! We enjoyed lots of time with her watching the boys swim in her pool and just visiting. It was a blessing to have that time with her. She really got to know all of the kids again and they got to know her. Before the visit was over, all three of them were hugging her and snuggling with her...even Max, who is our generally non-affectionate family member! The time we spent in Marco was precious. After a tiring, fun-filled 6 days in Orlando, we were thrilled to have some relaxing downtime in Marco with grandma. We also got to visit the beach a few times while we were there, took a boat ride with my Uncle Tom that lives near-by and had a couple of great seafood meals out on the town.

As you can see, our trip was beyond wonderful. We are so grateful to Make A Wish for giving us this very memorable experience. I said to my parents and Matt's mom last night that I felt like we had left as a paranoid, scared family and come home feeling much more normal and ready to re-enter the real world. The trip definitely threw us right back into reality - being in crowded airports and airplanes with Max and then being at Disney World with thousands of people from all over the world. It was a far cry from the quiet life we have been living here at home the past 16 months! I think the trip really got us out of our comfort zone and made us realize that things are going to be ok back in the real world again. We have definitely been baby stepping our way back to full reality for the past few months but, I'm not sure we would have taken the plunge all the way back in without this trip. It was so good for us to get out there again and have a really fun time together. We felt a lot like our old selves on this trip, the five of us together, just having fun, laughing and enjoying life...not thinking about Max's health or what the future might bring. It was much needed and very invigorating. I think we have definitely come back changed, once again and much more ready for our return to reality as a family!

We are busy here at home preparing for this month's continued celebrations. Our blood and marrow drive next week still has lots of openings so, please consider joining us for a donation if you can! Max's Meals is working up our menu for Mother's Day lunch next Sunday. We are also working on the preparations for our giant celebration on May 22nd at Beech Acres and Max's Bash at Ollie's the next morning. We are looking forward to seeing many of you there and enjoying some fun together.

Several of the friends that we met along our journey with Max are continuing to struggle with complications from their bone marrow transplants. We ask your continued prayers especially for Matthew Akin, Brayton Martin and Ethan Alfred and their families at this time. Their difficult journeys continue to remind us how exceedingly blessed we have been with Max's progress to date. We feel helpless when it comes to easing their struggles but, know that all of them appreciate the thoughts and prayers of others, even those they don't know.

We are eternally grateful to Make A Wish and all of the volunteers that made our trip happen, especially the Olsen family who worked extra diligently to raise the funds for Max's trip. They have placed precious, fun memories in all of our heads that I know we will cherish for the rest of our lives. We also believe that when Max looks back on this challenging time in his life, this Make A Wish trip will be at the forefront of his thoughts - exactly why we wanted to give him this opportunity. Thank you to all of you that have ever supported Make A Wish in your lifetime - you are making a huge difference to families like ours!

More soon...enjoy the pictures and videos!

Peace and love,

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

Saturday, April 17, 2010

Wish Granted! Hospital Updates! Max365 Challenge!

Hi all,
This is Aunt Sarah writing for Kristi. She wanted to do an update before they left for Disney, but several events yesterday prohibited her from do so. But we have great news to share!

First, the Meyer's are at Disney! Thanks to the Make-A-Wish Foundation and a local family who helped grant Max's wish, they are hanging with Mickey all week! They are all extremely excited to see Disney and do normal family things together! They woke up at 4:30 this morning, but to their delight, they were picked up by a limo and taken to the airport! Hopefully, we'll have updates as soon as they get back.

Second, after being up all night Thursday with Max getting sick, Kristi and Max headed to the day hospital for their regular treatment, not sure what Dr. Davies would say about Disney since Max was sick. Much to their delight, she said all systems were a go! Max got several IVs of fluids and his IVIG treatment so he is all set. Dr. Davies gave them more great news yesterday! Essentially Max is at a point where he is being minimally immune suppressed with the Cyclosporine (they are doing this so that Ellee's cells will win the fight against his) so, immune-wise, he is similar to a child that has had an organ transplant. Organ transplant recipients are on Cyclosporine for some time, sometimes the rest of their lives at a dose similar to Max's and function largely as normal children. Great news! He can pretty much do everything with cautions (handwashing, wiping down surfaces, etc.) other than swim in a public pool. Great news! Other than hanging out at the swim club, it looks like this summer will be pretty close to normal!

Thirdly, we wanted to share a website with you and invite you to take the max365 challenge! Ryan and I put together this site,, to celebrate Max's 365 day post-transplant. Our goal is to get 365 pledges to help give others a positive outcome from severe aplastic anemia and other blood diseases. Pledge to either give blood, register for the National Bone Marrow Registry, volunteer at CCHMC or the Ronald McDonald house or donate to Dr. Davies research, Make-A-Wish or Max's meals! By choosing to pledge something, you can help others like Max have a positive outcome. There are so many ways to help make a difference so thanks to all of you that have helped over this past year and thanks in advance to those of you who choose to help now too! We appreciate it so much!

Also, check out this great article about Max's Meals and the blood and bone marrow registry drive Kristi and Aunt Monica are having!

Saturday, April 10, 2010

Day +374: Enjoying Life...Ready to Celebrate!

It's day +374 and we have been BUSY!! Good busy, thank God! It seems like Aunt Sarah and Uncle Ryan's wedding was really a turning point for us. We had a BALL celebrating day +365 with our families here at home. I made a special video overview of Max's nearly 16 month journey which we all watched together...even the kids. We all were teary eyed throughout much of it, just witnessing the struggle he went through and then the miracle that has unfolded before our eyes but, it was great to revisit the past 16 months, all the ups and downs together and realize how much we have been through as a family and how far Maxer has come. We also had lots of fun and laughter. We played a few "365" basketball contests and threw 365 poppers on the driveway together. Max loved it, as always.

Easter was fabulous too. I started off bright and early with the sunrise service at church so that I could head down to the hospital with my parents to serve Easter brunch to the families on A5. It was quite a moving experience, once again. We were inpatient last Easter so, it was even more meaningful to me this time to be able to provide this meal to the families. Several kids (ie patients) that were allowed, came in with their families to get some food which was wonderful but, made things more tough for me, honestly. To see them with all their pumps hooked up to their central lines and the paleness of their faces brought back lots of tough memories. But, there were smiles on their faces as they enjoyed a delicious catered meal of scrambled eggs, ham, hashbrowns, sausages, fruit and home baked breads. Every scrap of food was gone by the time the two hours was over. It was thoroughly enjoyed by all and definitely made me feel that what I am trying to do with Max's Meals is important. I KNOW that we have brightened days for numerous families down there with the three meals we have provided so far and that they are so appreciated. I hear it over and over again each time we do this. Thank you, again, to those of you that have supported Max's Meals so far and please consider a donation at anytime to help keep these meals coming! We are already planning to bring both Mother's Day and Father's Day meals to A5.

We really enjoyed the rest of Easter this year too. We were able to attend Matt's mom's families Easter celebration, which we obviously couldn't do last year. It was wonderful to see all the extended family there and celebrate Max's progress to date. We also enjoyed the evening at my parents house with my sister and her family. I got to cuddle quite a bit with Baby Carter and Ellee was enthraled with watching Kim nurse him. Overall, Easter was fabulous.

We got a new addition to our backyard last weekend too. We bought a used trampoline (a really nice one with a basketball hoop and everything) from some people that were looking to get rid of it, as their kids had outgrown it. When we found out that Max wouldn't be able to go to the swimming pool this summer, we decided that we wouldn't renew our swim club membership again this year and told the kids we could use some of the money to get something else that they could enjoy around here this summer. They decided on a trampoline and we were looking for one when we found out that this one was available. Matt had quite a time moving the thing over here as it is 14 feet in diameter and a double trampoline! But, it has been well worth it - the kids LOVE it! You can see them bouncing away with their cousins the other day (Reds opening day here in Cincy, thus their matching t-shirts).

This week was very busy with jumping on the trampoline and planning of several different upcoming celebrations. Hopefully most of you received the Evite for the celebration on Saturday, May 22nd at Beech Acres. If you didn't, I apologize...but, we would still love to have you attend! Just go to the following link and let us know you are coming so that we can plan for the food, etc: We are thrilled that we have come to this point in Max's healing process and so look forward to seeing all of you and being able to thank you for all of the love and support you have shown us throughout this journey. We plan to share the video of Max's journey that I talked about above at this party and have lots of food and drinks for everyone as we enjoy the park too!

Max is also having a special celebration the next morning, May 23rd, at Ollie's Skatepark in Northern Kentucky. We have reserved the entire skatepark for two hours of private skating time for he and his friends! He asked to do this way back when he was in the initial phases of his diagnosis and treatment and we promised that we would make it happen, as soon as he was able to do it! We are working on some special transportation for him to the event - will let you know more about exactly what as we finalize things. I am sure he will be out there bunny hopping and zooming up and down the ramps with one HUGE smile across his face - back in his element!

Monica and I are also busy getting ready for the blood and bone marrow drive on Saturday, May 8th in honor of Max's one year post-transplant anniversary. It will be from 9 am - 3 pm that day at our church, Lutheran Church of the Resurrection. Please consider coming out to donate blood or registering to be a bone marrow donor! Let me know if you would like to donate blood so that we can get you on the schedule. You can stop by anytime that day to register to be a National Bone Marrow Donor.

Tomorrow afternoon, Monica's mother-in-law, Wynne McGrew, is treating Max, Alex, my mom and I and all the Meyer cousins and moms to tickets to Mary Poppins, the musical. She planned it in celebration of Max's progress and we are all excited to enjoy the show together! It will be a first for Max and Alex as they have never been to a live show like this at Aronoff before. I'm sure they will be awed and impressed.

Finally, we are gearing up for our GIANT family celebration that begins next Saturday morning, bright and early! All 5 of us will be picked up by a Make A Wish car at about 5:00 am to head to the airport for our flight to Orlando! We'll be in Orlando by about 9:15 am and will have the day to settle in at the Give Kids the World Village where we will stay with Make A Wish. That evening we will receive tickets to Disney, Universal and Sea World that we can use as we wish throughout the next six days! We have already begun checking out all that there is to do at these three parks so that we have some plans when we get to them and can see the things the kids most want to see. It's surely going to be a fun and exciting adventure in Orlando! We have been told that the Give Kids the World Village is incredible in and of itself. It looks like Candy Land brought to life and they have daily/nightly activities right on site including Disney character visits, horseback riding, a Winter Wonderland parade with Santa and SNOW, etc! I think I will probably need an entirely separate blog just to tell everybody about all our adventures and show you all the pictures after we get back!

After our six days in Orlando, we are heading down for a five day visit with my grandma in Marco Island. We haven't seen her in over two years and she just celebrated her 90th birthday in February so, we are greatly looking forward to spending some time with her. We have very much missed seeing her and can't wait to relax with her at her house and spend some time in her pool and at the beach. I'm sure it will provide us with some much needed recovery time after our whirlwind trip to Orlando!

As you can see, we are ENJOYING life!!! We are busy, as I said but, we are loving the busyness again! I cannot express how amazing it feels to be able to do things together, as a family! Just last night, we had some good friends over for a cookout here and the kids had a ball just running around together. We all said many times how much it felt like old times and how long it seemed since we had been able to have fun together like that. It was so great! This morning, I got to take all three kids out for a special shopping trip to GameStop (the boys favorite video game store) to spend their Easter money and then we all went to lunch together at Skyline while Matt got some things done around here. We all so enjoyed just sitting together at a restaurant again, having lunch.

Max's progress to date is truly a miracle. We are beyond grateful for the many, many blessings that have brought him to this point. While the road ahead is still uncertain and our heads are often filled with worry about Maxer, we have learned that we need to live in the moment, making the most of every second we are given together, enjoying life to the fullest and trusting that things will be alright.

We head down to the hospital next Friday morning for our regular monthly visit and medication infusions. I'll try to post a quick update on things with Max before we leave for the big trip on Saturday. I can tell you that I am anxious to talk to Dr. Davies and be sure that she is certain this trip is safe for Max! She has already told me several times that she approves of it and has signed all the necessary Make A Wish paperwork but, I just need her reassurance one more time! As Matt told me last night, we are never going to stop worrying about Max! NEVER!

Thank you for your continued thoughts, prayers, love and support. Hope to celebrate with all of you in May! More soon...

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