Sunday, January 31, 2010

Day +305: Bored but Happy

Today is day +305 for Max on his post-BMT journey and all remains well. We had a good time quietly celebrating day +300 last Tuesday together. Matt was out of town for work so, I took the kids for donuts in the morning and we actually went in to Dunkin and they got to pick out the ones they wanted (instead of the drive-thru we've been doing for months). There was no one in the store and Max wore his mask and didn't touch anything so, it was perfectly safe, just in case you were worried. :)

We are definitely starting to get a bit braver and venture out a little bit more. Max was actually in seventh heaven on Thursday of this past week as he got to go to Target for the first time in about 13 months! Matt and Alex went to the Xavier basketball game and Max, Ellee and I were sitting around here bored so, we decided to take a trip to Target. It was a bit nerve-wracking for me but, I made Max as safe as possible by making him ride in the back of the double stroller with the sun cover over him, not touch anything and wear his mask. It was not crowded in the store at all since it was about 7:15 pm but, I still made sure to stay far away from all people. We got lots of strange looks but, Max LOVED being there! We went up and down the toy aisles and the video game aisles and he looked at everything before deciding how he wanted to spend the $20 he had saved up. He ended up getting a remote control truck and has really been enjoying it.

We enjoyed a very fun evening on Friday with Matt's cousin, Megan and her husband, Todd. They invited us to their house to watch the Cavs play the Pacers, as Todd is a huge Pacers fan and has enjoyed talking with Max about the NBA. We all had a ball! Todd and Megan treated the boys to a very special evening. They had the house decorated for the game, had trivia prepared to quiz the boys with, had a Nerf hoop hanging on the back of their front door and even had special basketball oriented prizes for them. The boys have already asked several times when we can go back! They treated the boys very specially and I know they will remember that night for a long, long time. Thanks so much, Megan and Todd!

Other than this bit of excitement, things have been very quiet and relatively boring around here, which is ALWAYS a very, very good thing in the BMT world. It was a regular joke when we were inpatient and doesn't change a bit when you are outside the hospital. Boring and uneventful is just the way we like it right now!

Actually, our horizon is brimming with activity after activity and Matt and I are beginning to freak out just a bit. We have lots planned for the relative near future and it still seems somewhat impossible at this point, given the continued relative-isolation that we are living under to keep Max healthy and healing. We finalized our trip to Disney with Make A Wish on Friday. We are scheduled to go from April 17 - 23 and then we are going to tack on a five day trip down to Marco Island to visit my Grandma. She is turning 90 tomorrow and we haven't seen her in over 2 years now! We had a trip planned to see her at the end of February last year which we had to cancel after Max was diagnosed. We are all getting so excited about this trip. Everytime there is a commercial on for Disney, we all stop, listen and clap! We can't wait!

Prior to this huge event, we have Aunt Sarah's (Matt's youngest sister's) wedding on March 27th that we are all a part of. We are so looking forward to that is going to be like our grand "coming-out" party since it will likely be one of the first times we are all together in public places since Max was diagnosed. We can't wait to celebrate with Sarah and Ryan and just enjoy having fun together. We also have a trip to Hilton Head with all of the Meyer family planned in July and 6 weddings for my cousins this summer! So, things are going to swing in the other direction soon and, while it is so exciting and wonderful to think that we will ALL be able to participate in these activities, it is also somewhat terrifying at this point. We know we will be ready when the time comes and that we will all have HUGE smiles pasted on our faces as we enjoy these events together.

Max is due down in Day Hospital on Friday for his monthly check-up and medications. We will definitely have another long list of questions for Dr. Davies, as we are anxious to get her take again on all these upcoming activities. I am certain that Max will receive another good check-up but, I will be sure to post an update as soon as I can after our visit on Friday.

Max's Meals is continuing to truck along. We are in the midst of planning a Valentines Day luncheon for the inpatient families in the BMT and Hem/Oc units at Children's. There is so much more I want to do with Max's Meals but, I find myself continually not getting to do it with the demands of the three kids and the crazy puppy here at home. I know that eventually I will get to it and make more of it but, for now, thank you to all of you that have donated funds already! It is making a difference and, with your help, we are going to be able to closely meet our goal of providing at least one meal a month to the inpatient families this year.

I did have one other bit of excitement this week that I wanted to share with everyone. On Friday, I received an email from Jordan Culbreath's mother, Alma. You all may remember Jordan from an earlier post of mine about Max's heroes (you could find it if you look back - I think it was in October or November). Jordan is a senior at Princeton University and a star football player on their team. He was unfortunately diagnosed with Aplastic Anemia earlier this year and has been battling the disease ever since. The boys pray for him every night with Matt and I (reminding us to include him in our prayers if we somehow forget) and about a month ago, I finally decided to get on his Caring Bridge site and see how he was doing. He is undergoing some of the alternative immune suppression/chemo therapies in hopes of combatting the disease as a suitable bone marrow donor has not yet been found for him. I posted a note on his site to let him know how much my boys admire him and that we are always thinking of him and praying for him. Last week, his mother wrote me back to say that she had found Max's site back in November and they were all very touched by his story. Don't tell Max but, they are sending him an autographed football from Jordan! I am keeping it a surprise because I know how much it will mean to him and how much it will brighten his day when he receives it.

I know how much it will mean because I know how much it meant to me to receive that simple email from Alma. To know that there is someone else out there, especially someone like Jordan, that has been afflicted by this disease and to make a personal connection with them and their family is just awesome. When I read about Jordan back in October, I felt somewhat vindicated in a strange way, knowing what an amazing athlete and picture of health that he is. It helped me to answer some of my questions about Max - how did he get Aplastic Anemia; why did this happen to him? Questions that we will probably never be able to answer. Somehow, it gave me some peace that this disease could strike anyone, at anytime and we really don't yet know why. I so wish that a suitable bone marrow match could be found for Jordan as a successful bone marrow transplant is the only sure cure for Aplastic Anemia [another story to demonstrate how important it is to join the National Marrow Donor Registry ( and to spread the word to others to do the same]. While we don't know Jordan and his family and may never have the chance to meet them in person, there is a connection between us that will be there forever. Our precious sons are fighting for their lives against a rare disease. I know Alma's fears and struggles and those of Jordan's first hand and I wish no one else had to endure them. We pray that Jordan will be cured and go on to live a long and full life, along with our Max.

Thank you for continuing to join us in our journey and for all your thoughts and prayers. More soon...

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

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