Day + 228: Max is Famous!!!

It's day +228 for Max and he is officially famous now! Check out page B6 of the Local Life section of the Cincinnati Enquirer this morning. I'm trying to find a link for those of you out of town and will hopefully have one to post soon. It's a great article and Max was smiles, ear to ear at seeing the picture and reading what they wrote. He is sure that Ocho Cinco is reading it right now (you do know that he does get the Enquirer, right?). :) Anyway, hope you enjoy the article. Max will be giving autographs from 1 - 3 this afternoon. :)

More soon...

Peace and love,

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

Day +221: A Blob Invasion!

Today was day +221 for Max and all remains well. We have had a busy past few days so I thought I'd do an update tonight and let you all in on what's been going on.

We had a LOT of excitement on Wednesday afternoon when the Xavier University Blue Blob showed up in our front yard! The kids were quite surprised. Matt's Aunt Mary Ann brought them all new XU t-shirts so we had tricked them into putting them on before the Blob arrived, just telling them we wanted to take some pictures of them all together with their XU shirts on. They had looks of real shock on their faces as they came out the front door to see the Blob standing there! They all got to meet "it" individually and "it" presented Max with a special gift - a mini stuffed Blob. The kids then proceeded to play a great game of keep away with the Blob for about a half an hour. "It" has a really long tongue which Ellee got a big kick out of especially. She also did a couple of other really funny things. At one point, she went up to the Blob and touched "its" shoes, looked up at "it" and said, "I like your shoes." A few minutes later, she said, "I love the Blue Blob...Go Bengals!" We all got a good kick out of that! Overall, the kids had a wonderful visit with the Blob and it really brightened our day. About an hour after "it" left, Max said to me, "that was really cool having the Blob come here to visit!" Thanks, Mary Ann and the Blue Blob!

On Thursday afternoon, a reporter and photographer from the Cincinnati Enquirer came to the house to get info for their article on Max and the Skyping with his class. To my surprise, they were here for about an hour and a half! They observed Max on Skype with a classmate and then asked us lots of questions. We are hoping the article will show up in the paper soon. I'll be sure to post a link to it if I can, once it's published.

Friday was our scheduled visit to the Day Hospital for Max's bi-weekly medication infusion. It went well. Ellee's little marrow garden is blooming some good cells for Max and continues to grow and flourish within his little bones. His counts (white, red and platelets) have remained very stable for over two months now. While his white and red cells are still just below normal levels, his platelets have been outstanding at a higher than normal count! This has continued to be great news because Dr. Davies reminds me constantly that the platelets are the true indication of the engraftment. They are the last cells to come from the new marrow and the first to go if something is wrong so the fact that they have remained strong and steady has been continually comforting for Matt and I. Conversely, Max's engraftment percentage (the percent of cells being produced by Ellee's marrow vs. the small bit of his that remains) has waivered a bit over the past several weeks. He is currently at 92.8% again, where about 6 weeks ago he had been back up at 99%. The level of immune suppression medication in his body definitely seems to be linked with these fluctuations so, our Nurse Practitioner was going to follow up with Dr. Davies (who was stuck in an airport on Friday and unable to see us) to see if she wants to adjust anything as a result of his current decrease.

Other than that on Friday, we did discuss Alex's potential return to school with Dr. Joshi (one of the BMT outpatient docs that we have seen regularly) and our Nurse Practitioner, Paula. They had some reservations about Alex returning anytime soon, primarily due to the swine flu and some of the other germs that we have heard have been circulating at the preschool (ie chicken pox, strep, etc). They are going to talk about it with Dr. Davies and let me know her thoughts soon. We are trying to decide whether we should pay tuition again for Alex next semester or not. We would definitely like to send him for some part of this year as he will start Kindergarten in the fall and that will be a big change for him if he doesn't get to go to preschool at all this year. I am not at all concerned about him academically and really not even socially. It's more that I need him to be comfortable with being away from me and home again. I know it is going to be a rather large re-adjustment for him.

Saturday morning was busy too with shots all around! Spud had a trip to the vet for his last set of doggy vaccinations and then Matt, Alex, Ellee and I headed over to Norwood for our H1N1 shots. It went off without a hitch and we all got our stick. I must say that the Norwood Health Department deserves a round of applause for the way they handled the clinic. We were in and out of there within 10 minutes and the majority of the time was spent filling out the required release form. I don't know why every clinic in this country couldn't be run this way! They just took appointments for the number of vaccines they had and then we all showed up at our designated time, got them and went on our way. On the shot note, the hospital still does not have any doses for patients! They were barely able to offer the vaccine to all their employees last week. They don't know when they will get it for the patients yet and we are still anxious for it so that Max will have some level of protection within his own body...although we are extremely relieved that the four of us closest to him are on our way to being protected now. Alex and Ellee will need another shot in about a month (hopefully it will be easier to find by them) to round out their immunity to the virus but Matt and I should be all set in about a week to 10 days.

After that busy morning of shots (which no one liked, of course), we had a nice evening last night. Matt and Alex had seats on the floor for XU's exhibition game from a nice friend of ours at church that works for XU (thanks, Greg!). Of course they enjoyed the game and the wonderful view of the players. I didn't want Max to be disappointed that he wasn't able to go so, my mom and I planned a fun night for Max, as well as Ellee. My dad rented Indiana Jones for he and Max to have a special one-on-one movie night together. Since they are both high energy people and not much into sitting and watching entire movies, they fast forwarded to all the good parts and then played basketball in the basement which watching the UC football game. My mom and I took Ellee out to dinner and then to a local children's book store. She LOVED it! It was so cute to see her in the bookstore, enjoying just being somewhere different and all the new things to see. She was pulling books and toys off of shelves left and right. We came home with the Fancy Nancy Splendiferous Christmas book which she has enjoyed immensely today, as well as a few other books for the boys and some for all of us to read together. It was really nice to get out a bit and have a "girls night" of a different sort.

As you can see, the past few days have been busy and filled with fun and mainly good news. Unfortunately, we do have a couple of things causing us a bit of stress right now. Over the past three weeks, Matt has experienced some serious stomach pain three different times which has kept him up half the night, unable to sleep or get comfortable at all. After the second time it happened, I convinced him to go to the doctor and get it checked out. About a week ago, he had a cat scan as the doctor was concerned that maybe something was up with his appendix. However, his cat scan came back normal. Then, last Thursday night he experienced the same pain again with his stomach so, he went back to see the doctor on Friday. The doc now suspects that it may be gallbladder attacks so, he did some bloodwork on Friday and Matt is having an ultrasound tomorrow. We are actually hoping that they find some gallstones as we have learned that they will quickly remove the gallbladder then, which should stop the pain. If they don't, Matt may have to go through some additional testing to determine what is going on. We are hoping to know more tomorrow and promise to keep you all posted. We haven't put anything out on the blog about this yet because we don't want anyone to be alarmed or concerned. We are hoping and praying that it will all turn out to be relatively minor and be able to be rectified quickly and easily.

To add to the fun around here, our garage door opener broke on Friday so it won't go up and down at all without significant intervention (we can see that the spring is broken)! So, I am going to spend tomorrow morning on the phone getting quotes to have someone come out and replace/fix it. Fun! Just what I want to do right now.

Despite these issues, we are doing well overall. We have heard over and over again lately from people about how great Max is looking. People can see, just by looking at pictures of him on the blog, what we see everyday. He is getting better! His eyes have a sparkle and clarity in them again that was missing for some time. They are a beautiful shade of green and they just look gorgeous these days. His hair is adorable. The little curls and wave that came with it when it came back is so cute. We don't know if it will stay as Dr. Davies calls it "Cyclosporine hair" (the immune suppression med he's on) but, we'll take it while it's here...it's great! To add to his cute hair and sparkly eyes, his two top front teeth fell out about a month ago. His toothless grin is darling. We are so proud of him, it's unexplainable. Everytime I look at him, I feel pride for how he has handled himself in this very difficult time. I can hardly think of a time throughout this process when he wasn't smiling, laughing and making the best of things. He is an amazing kid. I often think that I cannot wait to see the kind of adult that he is going to be, given what an incredible person he is at 7 years old! Suffice it to say that I am proud of my little boy.

Of course, we couldn't be prouder of our other two as well. Matt and I have commented several times recently on how awesome the bond between Max and Alex has become. I don't know what they would have done without each other throughout this experience. Alex is absolutely devoted to his brother and the two of them have become inseperable. They sleep together, eat together, get dressed together, play everything together, even go to the bathroom together! Yesterday, Max wanted to play basketball in the morning and Alex had gone down with him to play. I overheard their conversation and heard Max remind Alex that he had to go get his shot soon. After a few minutes, Alex came upstairs and was moping around quite a bit. I quickly realized that he was very apprehensive, understandably, about the shot. Max would not play basketball without him and came upstairs to sit next to him and try to allay his fears. It was a parents dream to see the two of them interacting. Max was doing everything he could to try to make Alex feel better. He had even prayed the night before that the shots wouldn't hurt for all of us. Alex has been there every second for Max throughout this ordeal and Max knows it. He knows that Alex would do anything for him...anything. That's exactly the kind of brother that Alex is. The bond that has now formed between the two of them is priceless.

Ellee is our little miracle, as you all know. We felt very blessed just to have her in our lives before we even knew that she would save Max. She keeps all of us laughing and loving around here everyday. She is a big cuddler and kisser and is regularly heard saying, "come and snuggle me on the couch" to one of us. The boys love her and watch over her already. They treat her

with a special sweetness.

Spud is really fitting right in around here now too. He still has his wild puppy moments, of course, but overall he is finding his place here and bringing us lots of joy. The kids love to play ball with him and to pet him and cuddle with him when he gets a bit tired. One day last week, all three of them were petting him and Max said, "We love you Spuddy. You're the best dog ever."

Things are good around the Meyer house. Challenging, but good. The love is flowing. The bonds are deepening. Lots of good things are coming from this experience.

More soon...

Peace and love,

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

Day +217: Shot Appointments! YIPPEE!

It's day +217 and I just wanted to put a quick update out to thank everybody for their awesome support and help in locating some vaccine for all of us! We got numerous calls and emails with different potential leads and have been able to get an appointment on Saturday with the Norwood Health Department for shots for Matt, Alex, Ellee and I! YIPPEE! I did a happy dance after getting off the phone with them! Never have I been so thrilled to be getting a shot! Never did I ever think I would rejoice at the idea of getting a vaccine! Even Max was smiling! I have HATED needles my whole life...now, I must say, I definitely realize their value and, while I can't say that I love them, I appreciate them tremendously!

Besides that great news, we had a fun day yesterday enjoying the beautiful, crisp fall weather here in Cincy. We went for another hike with Papi at the Nature Center at lunchtime and then came home and played outside with our old friend, Grave Digger (a battery powered monster truck that Max got for Christmas when he was 4). You can see from the picture that we have now figured out how to fit all three of them in for rides at once!

We are expecting some exciting visitors here today and tomorrow. The Blue Blob, one of Xavier University's mascots, is coming for a surprise visit this afternoon (shhhhhhh!). I know the kids will be thrilled. They LOVE XU basketball and normally attend several games each year with Matt. Unfortunately, Max will not be able to go this year so, Matt's Aunt Mary Ann who works at XU was able to secure a surprise visit from the Blob to let Max know that the team appreciates him cheering them on here at home. Tomorrow the Enquirer will be here to get some pics and info for their article. That should be exciting too! Friday we have our regular bi-weekly Day Hospital visit so, I'll write again soon and let you all in on the excitement of things around here - from Blobs to shots! Lots going on!

More soon...

Peace and love,

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

Day +215: Skate Parks, Halloween Fun and Still No Shots!

It's day +215 for Max and he continues to progress well through the lengthy BMT recovery process. I apologize for the lack of an update for almost two weeks now! As I'm sure you can imagine, things are crazy around here and I find myself unable to accomplish much of anything these days! I sit down to type up an update and get interrupted by some little person at least 5 times in the first 5 minutes so, it just becomes impossible! Anyhow, I'm glad to be finally getting around to it. This blog is a HUGE help for me and I have missed pouring out my thoughts in it for all of you to read. It is somewhat of a lifeline for me right now. Things have definitely gotten tougher again lately, just in a different way than they were before.

You've all heard me say that the swine flu has made things extra challenging for us before and that has not changed a bit. If anything, things have gotten more challenging lately, primarily as a result of H1N1 circulating around Cincinnati and Anderson Township. We have still been unable to obtain the vaccine for any of us. The hospital, as unbelieveable as this seems to everyone, still has only a very small amount and all of what they have is the live mist. They are still waiting on vaccine for the doctors and nurses, as many of them, including all of them that work on the Hematology/Oncology floor (the 5th floor where Max is treated) cannot take the live mist because they work with patients with compromised immune systems (like Max). They do not have any yet available for patients or their families. It's quite depressing and completely unbelieveable. Sorry to say it but, the government has really screwed this vaccine distribution up! They totally missed one of the highest risk populations around - kids in or being treated by hospitals!

I talked with Dr. Davies about this situation at our last visit with her (a week ago last Friday). She understands my frustration and appears equally as frustrated. She promised to let us know as soon as she knows that the vaccine is available at Children's. I explained that even though we are very isolated right now and have thus reduced our risk for contracting the virus, we are still no more than one layer removed from it. Matt has had it at his office; it has been in all of my nephew's classrooms; my neighbor’s kids have had it; I'm sure it's walking around in the grocery and other stores that I visit here and there; etc. I told her that I felt it was a matter of time before one of us caught it so the sooner we can get protected, the better. I asked that if we were able to get the vaccine somewhere else, would that be alright with her. She recommended that Matt, Alex, Ellee and I get it wherever we can but that Max wait to get it from them. She does not feel that Max is going to have a “perfect response” to the vaccine, due to his suppressed immune system and thus, it is more urgent that the rest of us get it as soon as we can and safer for Max to just go there to get it where they known how careful to be about germs and I know how to get him in and out safely.

I have heard about several vaccine clinics here in town but, they have been flooded with people and I have not wanted to venture out with Alex and Ellee to stand in line around numerous people and their germs! We are living every minute of our lives in germ-a-phobia…the last thing I want to do is go running around town, exposing them to countless people, trying to hunt down this darn shot! Not to mention that technically, none of us meet the “high priority” list for the vaccine anyway. We are not pregnant, between 6 and 24 years of age or caring for infants less than 6 months. In addition, I can’t get a hold of anyone on a phone at these clinics to find out if they have the inject able version of the vaccine either, since we can’t take the live virus mist version at all.

Alright - enough venting again! I’m not one to sit by and let situations like this get the best of me. Unfortunately, with the three little ones and Max’s compromised immune system, I just feel at a loss for how to solve this issue. Thus, I am just trying to remain patient and calm. I keep thinking that the hospital just has to get it soon…they just have to! It’s crazy.

So, you can probably see why things are a bit extra challenging again now, just in a different way, as I said earlier. Max’s health is really good at the moment, which is hugely wonderful…we just want to keep it that way! That’s what makes this time so much more difficult again. We have entered into “viral season”, as Dr. Davies calls it and without the swine flu vaccine, we are even more hostages in our own home. We are scared to venture out. I went out to run a quick errand yesterday and as I was standing in line to pay, the little girl and her mom behind me started coughing. I tried holding my breath as long as I could and just stared straight ahead, hoping that no germs would get into my mouth or nose! On Halloween night, a group of high school girls came to our front porch Trick or Treating and one of them coughed. As soon as they left, I went in and grabbed a mask and spent the rest of the night handing out candy with it on! I’m sure I scared many of the kids but, I really had no choice. I just can’t let this germ get us!

Speaking of Halloween, the kids had a great time. It was different than usual but they still enjoyed it. Max did not Trick or Treat. Dr. Davies requested that he only go to a couple of houses for a short amount of time but, he was not really interested this year anyhow so, he stayed in with me and watched through the glass door as I handed out the candy. He was very comfy, as you can see in the picture. Spud joined him on his comfy bean bag for a majority of the time and kept him company! Alex and Ellee went out with Matt for about 45 minutes and rounded up a big bunch of treats. Alex was the wild basketball player, Chris Anderson and Ellee was a bumblebee. On their return home, Ellee told me, “I went for a walk with my daddy and I hold his hand. I got lots of canny - lollipops, bubble gums and chocolates. I’m gonna eat it!” She had a ball and has not stopped talking about all the “canny” since! After Trick or Treating, all the Meyer clan came over for a little Halloween party. They definitely made our night. We enjoyed just hanging out and watching the kids have fun together.

Beyond all that, we did have another great adventure last week at Beech Acres Park. Last Wednesday we headed over to Beech Acres to check out Max’s favorite outdoor skate park and take Spud for a walk. We were lucky to hit it at a time when no one was in the skate park so, Max got out there on his scooter for the first time in probably almost a year! He LOVED it! He told me that it felt so good to him to be able to do that again. He just picked up right where he left off. It looked like he had never stopped. I was a little nervous, to say the least - watching him cruise up and down concrete ramps again was a little unnerving. But, I was thrilled to see him doing something that he loved again and enjoying it. I did pause for a minute to realize, again, what a miracle this has all been. How unexpected and yet, how amazing this journey has been this past 10 months. Knowing what he has been through and yet, seeing him out there in that skate park, on his little scooter, cruising up and down those ramps like nothing ever happened, as brave and fearless as ever, was something inspiring and incredible. We went back again on Friday and he had a great time…this time we took his bike too. He is hoping to go back again tomorrow!

Max is Skyping with his class regularly now and enjoying it. I just got a call from the Cincinnati Enquirer a bit ago and they are going to come out on Thursday while he is Skyping to talk to us and take some photos for an article they are going to do about Max and the class interaction through Skype. Pretty exciting! Max smiled ear to ear when I told him they were coming.

Life is definitely different than it was a year ago at this time. I’m not working; Max and Alex are not physically attending school; Ellee is walking and talking like crazy; Max has a central line and appointments at the Hem/Oc Day Hospital every other week; we have a crazy new puppy running around the house, tearing things up; we are not thinking of moving anymore, like we were last year; and our worries are totally different. Life is different - simpler, yet crazier and somehow, more stressful at times. I am here at home with my three little ones 95% of the time, trying to find ways to keep everybody happy and entertained. We are definitely getting creative and, at times, a bit lonely and down in the dumps. Whenever that happens, we do our best to focus on how different next year will be from right now. That makes me realize and remember that I need to cherish these moments and appreciate all this time we have to hang out together. Before we know it, everybody will be back to school and running around with their friends and I know I will somehow long for these days.

The most important thing we have learned from this experience is that all that really matters is the relationships you have in your life and the love that you share. Without a doubt, we are building incredibly strong relationships amongst our family through this time together. For that, we are forever grateful.

More soon…

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

Day +203: All Is Well

It's day +203 for Max and things continue to go well for him, health-wise. We have not needed to make any additional trips down to the hospital for any concerns since our last regularly scheduled appointment 10 days ago, which is always a good thing. Overall, Max seems to feel pretty good most of the time. He does still tire much more easily than he would have before, tends to be pale with dark circles under his eyes, and gets stomach and head aches occasionally. Other than those things, his central line and the 5 medicines that he still takes three times a day, you would almost not even know what he went through just 203 days ago! He is doing well and we are extremely grateful for that!

We have settled into a pretty good routine around here too. Max's tutor comes to the house Monday through Thursday mornings and spends between an hour and hour and a half each time with him (5 hours per week). Max really likes her and is progressing very well with the home schooling. He is staying right on track with his second grade class so far. We have also begun a really cool thing with his class - on Monday morning we Skype (video chat through the computer) with them for their "morning meeting" and on Thursday afternoons, we Skype with them for "writing workshop" where Max gets paired with a partner to write together for an hour or so. It's been an awesome way for him to stay a little bit connected with his class and he seems to really be enjoying it. He has several buddies from last year in his classroom so, they have all been excited to see each other and get a little chance to catch up. We plan to do even more Skyping with them and work up to having Max in a reading group with fellow class members. Isn't technology amazing?!?

Alex is also progressing well through his last year of pre-school, even though it is currently happening here at home! His teacher and I have worked out a great system. She sends work and activities home on Monday for the week and I work through them with Alex and then send them back to her at the end of the week. So far Alex has learned lots about the letters A thru E and the numbers 1 thru 4. He really enjoys learning and works hard on his little assignments. I can just tell how badly he wants to keep up with his older brother. He's a great worker.

Ellee loves to color or play with Playdoh while the boys do their school work. She is famous for looking at me while she is doing this and saying, "I'm makin' a mess!" We end up with about 100 markers, crayons and chunks of Playdoh all over the floor but, it keeps her busy for a bit so that I can work with the boys. She got a new kitchen from my Aunt Laurie's company, Little Tikes, for her birthday and she absolutely loves playing with it. It's in the basement so, several times a day she says, "I wanna go see my kitchen!" and we venture into the basement to have her bake us some cookies and cupcakes. Speaking of her birthday, it is officially this Saturday and she is very excited about it. She keeps saying to people, "My birthdays coming up." and when you ask her how old she is going to be, she replies, "two and terrible." I couldn't believe my ears when she said it the first time, I don't know where she picked it up! So cute!

Besides all that, we spend LOTS of time playing and walking our little buddy, Spud. He is shaping up to be a pretty good little dog so far, although he still has plenty of crazy puppy moments that drive us all a bit nuts! They are all worth it though, as he really motivates us to get up and out of the house, even when it's cold or rainy. I know that is super valuable because we all can tend to get a bit depressed if we sit around inside here too much. Having him to keep us moving and getting fresh air everyday is really important...I think it helps us keep our spirits up.

We have also been able to keep seeing our cousins, Will and Ben (Monica's kids), at least once a week generally and our cousins, Andrew and Jacob every other week or so. The boys LOVE being able to play with them and would be happy to see them everyday but, they are busy with school and sports activities and we are also being extra careful about germs all the time. The darn H1N1 is circulating around both of their schools like crazy so we feel like we are all continuously dodging bullets! We hear regularly about more cases of it with friends and fellow classmates and it's freaking us all out, to say the least. We have all been hoping that the vaccine would make it here in time to spare all of us from the virus and give us some protection and it sounds like it is coming to their schools very soon but, in the meantime, we are having to hold our breath everyday that none of them come down with it. It has definitely added an element of extra challenge to this already tough situation with Max. I ask myself all the time, "why did this have to happen this year?!?"

I know I have no control over that and that we just have to be extra careful and get through this, at least until we can all get vaccinated. But, that has been the other part of the problem that has been so frustrating. I cannot get the vaccine for us (Matt, Max, Alex, Ellee and I) anywhere! It's somewhat unbelieveable but, the hospital does not yet have it, nor does our normal pediatrician. The schools seems to be getting it first, if you can believe that. So, I tried getting us all vaccinated through the school and that was not possible either, due to the restrictions the government has put in place for the school vaccination programs. I can't tell you how frustrating this has been. The hospital does not know when they are going to get them and basically can't tell me much at all. I was absolutely distraught last Friday after watching the local news and seeing seemingly healthy high school kids getting the H1N1 shots in one of the first rounds of school vaccinations around here. I realize that everyone has some level of risk in this situation but, no one can tell me that my son Max, having a bone marrow transplant 203 days ago is in better shape to fight that virus than a high school kid!!!!! I was extremely upset and angry and wanted to get this point across to the government that has put the priority list for dissemination of this vaccine into place so, I wrote a letter to Obama and his administration and sent it to him through his website last Friday. Everyday Max asks me if I have heard back from him - he knew I was upset about the situation and wrote to him. I have yet to hear from him. If anyone has any other ideas about how I can get this message out to the folks in charge of this vaccine, please let me know. Obviously, I am passionate about this and want the government to realize the mistake they have made here. I am hopeful that they care more about lives than economic impact and that is not what drove their priority list!

Now that I'm done venting...the H1N1 situation has made things much more difficult for us and it gets somewhat depressing at times. We were told at our last visit that we could go to the Zoo, just staying outside and away from other visitors, especially school groups. But, I am hesitant to go there right now with this new flu flying around town. I just keep thinking that once we get that vaccine, we will be so much more protected so we should wait. I am also waiting for that vaccine, as well as the regular seasonal flu which I also have not been able to find anywhere for Alex, to send him back to school. I want him to have that level of protection that those two vaccines can provide our family before he is around all those other kids again. These are just two examples of things that are "on hold" while we wait for this protection which hopefully show you how it can get you down. Our lives have already been so turned upside down. Not being able to get these vaccines is just making that worse right now and not allowing us the opportunity to even have a tiny bit more normalcy.

The outlook for Max's future remains promising. We feel that if we can get through this "viral season" well, as Dr. Davies called it, he may be on his way to a return to "normalcy". What continues to weigh heavy on my mind is what "normalcy" will be for us going forward. I think that with time, the concerns over Max's health will hopefully become less and less a part of our lives but, I know that they will never go away. This is not a process that "normal" people go through - I don't know anyone that is my age or my parents age, for that matter, and has had a bone marrow transplant, although I'm sure they're out there. We just can't be sure what the future holds for Max as a result of what he has gone through and I think that is the scary part. I tell myself that no one ever knows what the future holds but that reality is different for us now than it was before. As I've said before, our confidence has now been shaken like it never was prior to this experience. We now really know how fragile life is and how quickly it can all change and that definitely changes your perspective on things.

The other day, as I was taking a shower (usually one of the rare moments of quiet that I have in a day), I thought about Max's future wife for some reason. It's thoughts like this that I totally took for granted before that now make me freeze for a moment and pray that it will happen for him. I imagined the discussion that we will all have to have one day about the fact that he may not be able to have children of his own as a result of this BMT process. Then I imagined this beautiful young woman who is disappointed, yet accepting of that possibility and loves him despite it and how happy that Matt and I were that he had found her. These are the images that I continue to cling to...a future of happiness and endless potential, with all of this nothing but a distant miraculous memory!

More soon...

Peace and love,

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

Day +194: The Tide is Turning

It's day +194 for our Maxer and we have just had a string of events and fabulous news that has made us feel like the tide is finally beginning to turn for all of us! Last Friday we spent the day down at the Day Hospital for our regularly scheduled bi-weekly check-up and infusion of medications. We got to meet with Dr. Davies, Max's head doctor, which we hadn't been able to do in about 6 weeks. I had lots of questions saved up for her and every answer she gave us was so encouraging! She feels that Max's immune system is beginning to respond, based on a couple of different signs. This is obviously huge news and a wonderful sign that things are progressing well for Maxer. It also means that a couple of prior restrictions can be lifted, the largest of which is that Max no longer has to wear his mask when playing outside!!!! Max could not believe his ears when Dr. Davies told us this...he fell back in his bed, pretending to faint and then did a little happy dance. She loved it and got a huge kick out of his reaction. We only need to wear the mask when going to and from the fifth floor at the hospital and in any other situation where Matt or I deem it may be appropriate (obviously if he is going to be around more than one or two people outside, we will probably have him put it on). She said that we still need to be careful and essentially keep to ourselves throughout this viral season (with the exception of a few clean visitors) but that she really felt that Max's immune system was giving him some layer of protection at this point. She believed this so strongly that she shocked me by saying that she wanted him to get both the seasonal and H1N1 flu vaccines! I couldn't believe my ears! She explained that she believed his system would respond at least somewhat to the vaccines and, as a result, give him some level of protection against these viruses. If it didn't, there was no harm done because the virus is not live and it would essentially just amount to the wasting of a shot. So, Max got a seasonal flu shot last Friday while we were at the hospital and will get the H1N1 shot once it is available! Wow! On top of all this, we discussed the possiblity of a return to school sometime post-viral season if all remains well and a trip to Disney with Make A Wish in April or May!!! We also discussed the removal of the central line briefly and she hopes we might be able to get it out before Christmas.

Obviously, all of this news was so elating! I just kept looking at my little boy and thinking, "he is getting better...yes, he is getting better!" It was an amazing feeling for all of us. The first thing Max did once we reached home was to get out of the car and run around the yard without his mask on. It may seem like such a small thing but for Max, this is incredibly liberating. He has endured those darn things for 10 months now outside and I think it feels so great to just be able to open up the door and walk outside! I can tell you for us it feels great too - we can finally open our windows here at home and drive with Max in the car with the windows open! Woo, hoo! We are living big time now!

Needless to say, we were on cloud nine Friday night. We all were just reveling in the excited emotions that progress brings! To top off these elated feelings, Matt, Alex, Ellee and I joined over 100 people on our team, Max's Mighty Mob, at the Cincinnati Walks for Kids event for Children's Hospital on Saturday morning. It was incredible. Everywhere we turned there were more supporters of Max and our family, wearing their "Max's Mighty Mob" t-shirts with pride and marching along with us in thanksgiving and support of the miracle workers at Children's. We could not have asked for a more uplifting and positive event. It was amazing to see all of the people that we know have been behind us for all these months there in person and to be able to hug them and tell them thanks. We even had family members and friends that traveled from a great distance to walk with us. My Aunt Annie and Uncle Garry and cousins, Tim, Bill, Brighty and Molly came all the way from Cleveland along with a couple of their wives and friends. A very special friend of mine from Michigan State, Karen Toovalian, brought her husband, Brian and their three kids, Lia, Stefanie and Paul (7, 5 and 2) all the way 6 1/2 hours from Michigan to join us too! Not only was it touching to have so many friends and family members from Cincy there but it was something extra special to know that these folks made such a HUGE effort to come down here to join us and support us in this way.

We ended up having one of the largest teams of walkers and raising over $10,000 for Children's. It was a day to remember. The only thing that can top it is to have Max at the head of the pack, leading his Mighty Mob next year and for many, many years to follow! We definitely plan to make this an annual family event and hope to recruit more and more Mob members and more funds for Children's every year so, hold on to your t-shirts if you have them!

To top off this string of incredible days, we celebrated Alex's upcoming fifth birthday (tomorrow, 10/13) and Ellee's upcoming 2nd birthday (10/24), along with cousin Willie's 8th birthday and Uncle Mark's ?? birthday last evening here with Matt's family. The kids had a blast playing an official baseball game with the dads on the diamond down the street and then came back here for a special "Fancy Nancy" dinner in honor of Ellee's favorite storybook character. Check out the pics from the walk and the birthday bash both in this post and in the Snapfish Fall Photos link on the side of the Blog home page. We got some great shots! We have spent most of today playing with Alex and Ellee's new gifts and assembling some of them (lucky me). It's been nice to have some new toys in the house - definitely lots of excitement!

We started obedience training with Spud last week and it seems to be really helping. He is settling in around here and beginning to listen to me a bit better! :) He still has his wild puppy moments but, we are all absolutely in love with the little guy and enjoying him the majority of the time. He is growing like a weed - must be at least 3 or 4 times bigger than he was when we got him. The vet says that he will likely far surpass the 40 pounds that the rescue organization thought he might be! Whoops! All the more reason for that obedience training!

All in all, things are great. The light at the end of the tunnel keeps getting brighter and brighter all the time...sometimes it takes big leaps in brightness like it did last Friday. We are so grateful for Max's steady, positive progress and hopeful that time, continued care and vigilance will soon find him ready for the "real world" again. We are struck continuously by the miracle that has occurred within our lives. Many times it is hard for us to really believe all that has transpired in this relatively short amount of time. Just 10 months ago we had three seemingly healthy, beautiful children. Things changed overnight and took our breaths away. We were stunned and quickly called to action to save our child's life. Now, as things begin to slow down again and we are able to reflect on all that has happened, we feel so blessed, over and over again. We want to use this journey to make a difference in people's lives and to make the world even just a little bit better as a result of what Max has had to endure. We cannot think of a better way to return our blessings than to turn this difficulty into something positive and beautiful. The walk this weekend was a great example of this in action and we hope to do more and more things like this as time goes on.

I want to leave you all today with one of my favorite poems. I have always loved this and it seems more and more meaningful and relevant to me as each day passes. Hope you enjoy it too.

Christ Has No Body

By St. Teresa of Avila

Christ has no body now on earth but yours,

No hands but yours,

No feet but yours,

Yours are the eyes through which is to look out Christ’s compassion to the world;

Yours are the feet with which he is to go about doing good;

Yours are the hands with which he is to bless men now.

Peace and love,

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

Day +186: Passed Another Milestone!

It's day +186 and I'm finally finding a few minutes to blog again tonight! Sorry for those of you that we don't get to see here and there...I hope you weren't worried! Things have just been busy and, as I've mentioned in my previous posts, more than a bit tiring! We are taking advantage of just about any opportunity that we get to rest so, blogging has been on the back burner lately.

Anyhow, things remain good with Max and his progress through the BMT marathon. We have not been back down to the hospital since our last regularly scheduled bi-weekly visit almost 10 days ago! No issues have arisen since that visit, thank God, so things have been relatively quiet on the healthcare front the last few weeks. Just truckin' along, keeping Max on track with his daily meds (down to 4 in the morning, 1 in the afternoon and 5 in the evening) and hydration.

Max's energy level continues to increase daily and his desire to do all the things he did before his transplant also continues. It remains a challenge to find ways to keep he, Alex and Ellee entertained while at the same time, safe from germs. The lovely swine flu has made things all the more difficult. We have had to rethink everything that we were doing in light of the fact that it continues to spread and that there have been cases of it popping up here in Anderson more and more frequently. The regular flu would be quiet a challenge for Max's immune system to overcome, so the new swine flu would be all the more difficult for him. Thus, we are buckling down once again. I am trying to keep our circle as small as possible again to keep all three of the kids protected, as well as myself. We are all getting the seasonal flu vaccine (I got mine last Friday...wow, my arm ached for 2 days) and are anxious to get the H1N1 vaccine as soon as possible. I have to say, we are so very thankful that they have already developed one! At least we have some chance of keeping the germ at bay once we have the vaccine. I know that many people have mixed feelings about the vaccine, given the speed with which it was developed and I am not trying to convince anyone to get it or not to get it, I just have an entirely new perspective on vaccines now than I did before. They are true lifesavers! So, I am beating down every door I can to get the four of us (Matt, Alex, Ellee and I) lined up to get it ASAP. Max can't receive any vaccinations until his immune system is back up to full strength (hopefully at about a year post transplant) so we all need to do everything we can to protect him ourselves. Needless to say, I am very happy with the decision that we made to keep Alex out of school still at this point. I would be a basketcase!

As I mentioned, we are doing our best to keep everyone entertained and happy around here. Boredom has set in! We are having to get exremely creative! We did come up with a couple of things this past weekend that got us out and about a bit and enjoying the beautiful fall weather here in Cincy. Matt and his dad took the boys golfing on the local par 3 course on Saturday morning. They LOVED driving the carts (which Matt wiped down with Clorox wipes first) and enjoyed being out of the house for a few hours. Ellee and I met my sister and niece, Audrey, at a local preschool playground (see pics) and had a great time playing together and taking a little walk. Unfortunately, we hit another snag last week with our visits with my sister and Audrey. Kim took Audrey to get the flu mist last Saturday morning. I knew that our immediate family could not get the mist because it is a live virus so when Kim told me that she had taken Audrey, I checked into the precautions that we needed to take if we were going to have Max be around her. We had just gotten permission at our last visit to see Audrey as long as we kept Max and she at a distance from each other when inside. It turns out that Max has to stay away from anyone that has had the flu mist for 21 days! We were quite shocked to learn this! Thus, Max still can't see Audrey! I told Kim yesterday that hopefully we just have 2 more weeks to wait it out and then we can be together like a somewhat normal family again! Ugh!

Overall, while things remain good with Max's progress, life is still tough. We are struggling to stay smiling and happy throughout this recovery period. We did pass another milestone last week - six months post transplant as of October 1st! Matt and I had the chance to enjoy a quiet dinner out together last night (his mom offerred to watch the kids for us so we could get out a bit) and we enjoyed reflecting on this fact. While it seems like just yesterday we were in the hospital, filled with fear and anxiety and holding our breath that everything would go alright for Max, it also seems like an eternity since the last time we walked Max down to the bus stop to head to school last January. The world we knew before is so far removed from us now. We are in an entirely new place and it all happened so quickly. We never could have imagined this would be our life. As wonderful as Max is doing and as bright as his outlook for the future is, this journey remains difficult for us to entirely comprehend and absorb. In my mind, what is most difficult is that my core confidence has been shaken. I never had reason before to think for one second that Max or any of my kids would not be here for as long as I was and much longer. Because of this experience, the realities of life are all too present now...life is fragile...you never know what may happen. I think my greatest struggle at this point remains truly coming to grips with this reality. I hope and pray everyday that I will come to a point where I can accept this fact and not fear it and move forward knowing this and as a result, make more out of every moment of our lives together. I know that ultimately, this is an amazing gift that we have been given through this journey.

A few weeks ago, I told you about a family that lost their son, Andrew and that the same family was in the midst of a bone marrow transplant for their second son, Matthew who was affected with the same condition (HLH). Matthew has had some setbacks on his BMT journey and the family continues to have tough times, to say the least, although I have faith that he will pull through it and go on to live a full life. Kristin and Justin, the boys parents, are amazing and extremely inspiring to Matt and I. We think of and pray for all of them everyday. This past weekend, the Histiocytosis Association of America held the Hike for A Cure up Half Dome in Yosemite. Kristin and Justin had planned to hike together to honor their son, Andrew's life. However, due to the difficulties that Matthew was facing, Kristin was unable to go and instead offerred 18 things (in honor of the 18 miles that the hike covered) that all of us could do to honor her son. I wanted to share them with all of you. If everybody just did one or two of these things, it would make such a difference in so many people's lives. I know that most of you never knew Andrew but, I know that his story and that of his families has touched many of you and that by doing any of these things, you will be honoring them as well as countless other families that have faced this challenging process:

1. Join the National Marrow Donor Program-if you STILL have not! Go to http://www.marrow.org/.

2. If you are already on the registry or are unable then pay for a friend or family member to join.

3. Donate Blood-you might remember from an earlier post I did that 60% of Americans are eligible to donate and only 5% do.

4. Donate Platelets-they have a very short shelf life of 5-7 days thus you cannot stock pile them.

5. Donate Plasma-it too is an important blood product that is always in need.

6. Donate your time-it is the most precious gift we are given. Your local children’s hospital would be a great place to start☺

7. Tell someone about HLH (or Aplastic Anemia) -it is not cancer-and it does not receive any federal funding. It is an immune deficiency that is only cured through a bone marrow transplant.

8. Volunteer at a local bone marrow drive or organize one yourself at your place of employment, church or other civic organization.

9. Make a meal for a family that is living in-patient. Take it from me-home cooked food is a real treat after months of hospital cafeteria and junk!

10. Make an annual donation to the Histiocystosis Association of America (or to the Aplastic Anemia & MDS International Fund) every year on September 5, in honor of Andrew’s life.

11. Keep yourself and your loved ones vaccinated. It is not just important for your safety but for all the immune suppressed kids everywhere.

12. Pray-don’t just say you do it. Make it a priority and really speak to God.

13. Make a plan to spend more quality time with your children. They are really never ours-they came from God and will go back to Him at some point and there is no guarantee when that will be.

14. Laugh more-if Andrew could do it facing chemo, non-stop drugs and back to back to back bone marrow transplants-than I think we can too.

15. Smile more. It is not only good for you but all those around you. We can’t help but feel better when someone sends a genuine smile our way. I suppose that is why so many people loved spending time with Andrew-he was full of smiles to everyone he met.

16. Bring some goodies down to the BMT unit of your local hospital for the nurses and doctors. I cannot begin to count the number of staff that helped Andrew along the way. Working with critically ill children is tough-very tough.

17. Count your blessings-and be grateful for them.

18. Give thanks for the amazing gift we were given in the life of Andrew Preston Akin.

We are continually grateful for all of your love and support and can't wait to walk as Max's Mighty Mob this weekend! I know it is going to be amazing to see so many of you at Coney this weekend and to be able to hug you and rejoice with you in Max's healing. I promise lots of pics and updates next week!

More soon...

Peace and love,

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