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)

Day +177: Tired...Just Tired

It's day +177 for Max and he continues to progress well through the BMT marathon. We were down at the hospital yesterday for our bi-weekly Day Hospital visit and medication infusions and his latest blood counts look good. Based on his counts, progress is continuing in the growth of Ellee's little marrow garden within his body. He is just below normal levels with his red and white cell counts and is doing wonderfully with his platelet count (367 yesterday...as a reminder, it was 6 when we first took him to the doc in January)! The doctors are all pleased with his progress and feel it is just a combination of time, patience and germ protection that we need to get him back to full strength and complete blood counts. All wonderful news. In addition, the cultures of his bumps have all come back negative...no virus, no bacteria and no fungus at this point. So, a dermatologist looked at them yesterday just to be extra safe and we are treating them as if there is some kind of secondary infection but, she thinks that he may just be extra sensitive to bug bites right now. Who knows for sure...we are just thankful that they are nothing more than that! After almost 7 hours at the hospital yesterday, we left feeling tired but, happy and grateful, as usual.

Obviously, things with Max's health are moving along just swimmingly. The difficult part now is that we are all just tired. As I referenced in my post last week, we are all increasingly tired of this lifestyle. We would like the happy times back. We are all doing our best to remain upbeat and positive, knowing this is all temporary but, it is taking its toll on all of us and wearing us down somewhat. As I have said to many people, my life, in particular, was quite difficult before I had a child with a life threatening illness. Having three kids in six years was keeping me busy...now add in the worries and work associated with Max's illness and I am just wiped out. Matt feels the same way. His job has gotten increasingly challenging over the past few years, as has our life at home with the three busy youngsters. Now he is feeling the pressure of the bad economy at work (not to mention that I am not working right now either) and is coming home to three energetic kiddos that have been stuck at home for months! It's a lot to handle for both of us. Then we added Spud into the mix and while he has brought lots of joy to all of us, he is also no picnic! As everyone knows, puppies are work...lots of it! He is great at causing lots of trouble, especially each morning. His favorite thing to do is to steal a paci from Ellee and then run out the dog door so that I have to chase him around on the deck and in the yard to retrieve it. Fun!

To top things off, we have had an extra rough week with Ellee. All kids go through phases and maybe because her second birthday is fast approaching, she is going through some kind of preparation for the terrible twos this week! We aren't sure but suddenly, as of last Monday, she doesn't want to cooperate with us about sleeping. She has cried and thrown a temper tantrum for every nap and bedtime this past week and has been up at least two nights during the middle of the night crying and wanting to "rocky, rocky" in the rocking chair. Last night was the clincher. She woke at 2:56 am and started having one of her fits, screaming and crying for us to "rocky, rocky" or "go downstairs". This went on for two hours, in which she managed to wake up Spud who howled like crazy from his crate down here in the family room. Such fun! Matt and I finally got back to sleep about 5:00 am, only for Max to come in at 6:00 am, ready to go for the day! Needless to say, we are both exhausted today.

Dealing with the normalcies of child rearing right now is extra challenging. Did I mention, that we are tired? We feel like we are also recovering from Max's bone marrow transplant in some way. I think the months of sleepless or restless sleep nights have caught up with both of us these past several weeks and our bodies are now trying to make up for lost rest time. We try so hard everyday to focus on the positives within this situation and to make the best of it. We just have to admit, however, that it's tough and sometimes it just sucks. It's a struggle and the biggest challenge of our lives. We talk all the time about our hopes for the future...a day when this whole experience is just a "line on the resume of our lives", is how we like to think of it. We are confident that time will come and that we are strong enough to get through this challenge. Everyday we become a closer and closer team as a family and we know that will be everlasting.

Max is doing better emotionally with everything. We were discussing the upcoming Holidays on the way home from the hospital yesterday and he asked me if he would be able to play in the snow this year as he couldn't last year because his counts were so low. I told him that he would be able to, which made him very happy. Then he told me that his sickness was the worst present he ever got for Christmas. While he is doing much better in terms of adjustment to his current life, he still struggles with it and wishes it never happened, as do we. Of course we would rather that none of this ever happened but we know that we can't change it and we are doing our best, all of us, to get through it. We all ask ourselves and God "why" and we try to imagine all of the good reasons "why" this had to happen to Max. I found the following on a posting of a fellow BMT mom and I'd like to think this is part of the answer:

THE CHOSEN MOTHERS
By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen? Somehow I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard.” Finally, He passes a name to an angel and says... “Give her a child with a life threatening illness.”

The angel is curious. “Why this one God? She is so happy.”

“Exactly” smiles God. “Could I give a child with an illness to a mother who does not know laughter? That would be cruel”

“But does she have patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has its’ own world. She has to make it live in her world and that’s not going to be easy.”

“But Lord, I don’t think she believes in you”.

“No matter. I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps – “Selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see: ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side”.

“And what about her patron Saint?” asks the Angel. His pen poised in mid-air.
God smiles. “A mirror will suffice”.

Aaaaaaaaaahhhhh...Matt and I (I know it applies to Dads as well) just need to read this everyday right now and know that there is a larger plan in all of this and be grateful for the wonderful things it is teaching us and doing for our family.

We are so thankful for all of your continued support and love. Max's Mighty Mob remains at the top of the fundraising list for the Cincinnati Walks for Kids event with $6,242 raised and 70 walkers! Incredible! I just ordered awesome t-shirts for everyone walking today from a wonderful charity organization here in town, the Aubrey Rose Foundation (http://aubreyrose.org/). Part of our t-shirt costs are also going to a good cause! I'll be sending a note out soon to those of you that have signed up to walk with more details regarding the upcoming big day. If anyone else still wants to join us, please go ahead...we would LOVE to have you.

More soon...

Peace and love,

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

Day + 169: Bump Update

It's day +169 and I thought I'd just post a quick update on the bumps on Max's legs because I figure I have some of you worried like I was. They are greatly improved, thank God! Our Nurse Practitioner, Paula, called yesterday too and so far all of the cultures have shown nothing "life threatening" as she put it. In other words, so far no serious bacteria, viruses or fungi have grown in the lab. Phew!!! Another HUGE sigh of relief. We will still await final results of the tests but at the moment, we are relaxing a bit. We still all feel that it was likely Impetigo as the oral and ointment antibiotics seem to be clearing it up and Paula reminded me that they saw the tell-tale red rings around the bumps, indicating some kind of bacterial infection. But at least at this point it seems to be clearing up nicely and we seem to be getting it under control. Phew, phew, phew.

We are enjoying the absolutely beautiful fall weather here in Cincinnati with our little pup. Have a big day planned of walking in the Nature Center with Grandpa Papi at lunchtime! Of course, we'll be keeping those little legs of Maxers covered up with pants and bug spray to try to avoid any more drama!

More soon...

Peace and love,

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

Day +167: Keeping Things Interesting

Today is day +167 and I can truly say that Max has been keeping things interesting for us throughout this process. Yesterday we headed down to the hospital again because Max began coming down with some unusual spots on his legs as of last Saturday night. They were about dime-sized, clear, raised, fluid filled bumps, for lack of a better explanation and he went from having one on Saturday night to four by yesterday. Dr. Joshi (one of the other BMT docs that has been our primary outpatient doctor, along with Dr. Davies) and our nurse practitioner, Paula, had to break the bumps open and culture them, including using a little needle on one of them so, that was lots of fun for Max! He made it through like a champ, as usual. They are unsure what we are dealing with now but are suspecting some kind of bacterial skin infection - they mentioned the possibility of Impetigo, potentially caused by either a regular staff that lives on the skin or MRSA (methicillin-resistant staph aureus...in other words, medication resistant staff...common in hospitals). Ugh...here we go again! As the doctor and nurse said, Max is keeping things interesting. While this hopefully will become another relatively minor bump in the marathon-long road of the BMT process, it is once again concerning and worrisome. We have already started a new oral antibiotic, Keflax, that should help clear the bumps up if they are Impetigo caused by a non-medication resistant bacteria but, if the Impetigo has been caused by MRSA, we will need a stronger antibiotic that can wreak havoc on the digestive system...ugh! We are also applying antibiotic cream to the bumps at least three times a day. Keeping me busy! We are hoping to have some results from the cultures that they collected yesterday by tomorrow and I'll let you all know as soon as I know. Of course, Impetigo is contagious too so, I am doing my best to protect the rest of us around here by washing my hands even more and wiping down everything even more often. It's a constant battle of one sort or another! Max's weakened immune system makes it much more likely that he could have this problem but it doesn't preclude the rest of us from getting it too. The biggest concern with Impetigo is that it could migrate into the blood stream and cause much larger problems. My hope is that, if this is what it is, we have caught it very early and that things will be stopped long before that could happen but, we'd appreciate any prayers you can provide for that outcome too.

We were down at the hospital last Friday as well for our scheduled Day Hospital visit and got all good news while we were there. Max's blood levels all look relatively good, although his red and white cells continue to be below normal. My brother, Patrick, went with us for our visit, as did Alex. Uncle Patrick was in the Bahamas while Max was hospitalized and wasn't able to get home to visit him during that time so this was an opportunity for him to experience a bit of what BMT Unit hospital life is like. He got a small taste of it (we were only there 3 1/2 hours) and got to meet a few of the doctors and nurses that we have come to know so well. The pictures are from our visit last Friday too...Alex was tired so he snuggled up with Max in the tiny little bed-chair for a bit...pretty cute!

The best news that we received recently came yesterday from our Nurse Practitioner. As of last Friday when the blood sample was drawn, Max was 99% engrafted with Ellee's marrow! This is such wonderful and relieving news to all of us. It means that Ellee is winning the little tug-of-war that was waging inside Max over the past few months between his remaining cells and hers! And, it proves that Dr. Davies was right...not that we doubted her. She had said all along that we just had to find the right balance with his Cyclosporine (immune suppressant) level so that Ellee's marrow could grow and take over without allowing Max's remaining cells to gain any strength. It appears we have found that right balance and things are progressing well within Max's body. Now we just need to find a way to stop him from encountering any more germs so that we don't have to deal with these other little challenges either!

Besides this excitement, things have been fairly quiet around here. Spud is settling in nicely and we are all enjoying him. He seems to be a pretty smart little guy and is getting the hang of the housebreaking more each day. He learned how to go in and out of our dog door the other night and has been letting himself in and out as needed to go potty...although not every time, unfortunately! He is a very sweet little pup and is bringing lots of joy to all of us. He is accomplishing just what I hoped for with the boys too...he is getting them up and off the couch and playing outside lots as well. The video games have hardly been on this past week and a half!

We are continually amazed at our Max's Mighty Mob team progress! At the moment, we are the leading fundraising team with Aunt Sarah Meyer topping the charts in individual fundraising for the entire walk! We have 46 people signed up to walk, including several of my family members that are coming down from Cleveland to join us in the walk...and many of you have told me that you plan to walk and just haven't signed up yet! What an awesome show of support for Max and for the fabulous hospital that has helped save his life. We cannot tell you all how thankful we are for this opportunity to show Dr. Davies and her entire team how much we appreciate them and what they have done for all of us. They are true heroes and deserve to be told that. Unfortunately, it looks like Max may not be able to join us for the walk. When we asked Dr. Davies on Friday, she didn't like the idea, saying that there were just too many people and thus, too much potential for germ exposure. But, I'm going to revisit it with her one more time at our next visit just to be sure it wouldn't work if he stayed in a stroller with a plastic cover over it and had his mask on. Either way, we will make the best of the situation and honor "Max the Magnificent" and his fantastic fight as the Mighty Mob takes to the sidewalks of Coney Island! If he can't be there, we'll take tons of pictures to be sure he knows how much people did for him. He already knows about the team and our current spot in the fundraising effort and he is quite impressed!

On another note, we are switching gears with regard to Max's Wish from the Make A Wish Foundation. We heard from them about two weeks ago as they had begun planning out Max's trip to the NBA All Star game and ran into some trouble. When they spoke to their national office about the game, they found out that the NBA can only accomodate 4 Wish Kids a year at the All Star game. Thus, Max would be unable to go for 3 years!!! He was very disappointed, to say the least, saying that his favorite players would be retired by that point! So, after talking everything through for about a week, he decided to ask to go to Disney instead. We are thrilled with this idea, of course, as we know it will be an incredible family experience and we feel that Alex and Ellee really deserved some special treatment as well. This has definitely been no picnic for the two of them either! We don't know yet when we will be able to make our trip but are hopeful that maybe we can go this spring. We are planning to talk to Dr. Davies about it more at our next appointment. It will definitely be a trip that we look forward to and I'm sure it will be one that we remember forever.

I went to a parent-teacher coffee today at Alex's school and before it started, his teacher asked me if I would briefly explain our situation to the other parents so that they would understand why Alex was not yet in school, in case their child came home talking about this "missing Alex." I have to say that it was weird. I didn't know one other person in this room and it felt like the most out-of-body experience I have had yet in this journey. I just spent about 30 seconds talking about it and I could see the somewhat shocked look on the other parent's faces. I could just imagine them wondering why it happened and thinking how awful it must have been, etc. I've reflected on these brief moments a little bit today and I just keep thinking that this is just our life now. It's just part of who we are and what we have to do. We receive lots of complements from people about how well Matt and I have handled this situation and how we have turned a crisis into a positive. Of course, we are honored to hear those kinds of things and appreciate those comments but, we both have somewhat of a hard time hearing them too. We have just done what we have had to do and have tried to make the best of it. We have been blessed to be surrounded by people in our lives that have taught us to handle things this way. Our belief is that Max is the real hero here. He has handled all of this with an incredible, upbeat attitude and a maturity well beyond his years. I was recently told by a cousin of Matt's who met one of the BMT residents that worked with Max that they call him "Amazing Max." She told Matt's cousin that every time that the doctors went in to see Max while he was in the BMT Unit, he had an amazing attitude and they would leave in awe of him. We like to think of him as Magnificent but, Amazing works too. :)

It's tough seeing your little boy endure something like this, to say the least, and we are tired. It's been a long road and we still have a ways to go before we reach the finish line. We're tired of worrying, of medicine, of hospital visits, of germs, of hand sanitizer, of being confined at home, of missing out on fun things, of not being able to go on vacations or to school or even to the grocery store or church together....but, we are so, so, so grateful. Every minute of every day we are grateful for our many blessings. Our three beautiful children, our adorable new puppy, our comfy house, our marriage, our families, our friends, our church, the constant support and love we have felt throughout this process and still feel now, the list goes on and on. Life is good...and we are making the very best of it and will continue to do so everyday for the rest of it!

Peace and love,

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

Day +161: A Little Ray of Sunshine

It's day +161 and we have an official new addition to the Meyer family! Spud arrived early - we picked him up on Sunday at about 1:30 pm. I think we are all falling in love! He is darling and has a perfect personality. It was definitely worth the wait for the right little guy! He has kept us quite busy the last couple of days, thus the reason that it has taken me this long to get a post up.

I was pretty much up with him the entire first night - he was crying and just heartbroken to be away from his first family. But, I applied some tough love with a crate the last two nights and he has made excellent progress already. He went from 10 pm - 6:15 am last night without a wimper and with no accidents in his crate! I was very pleasantly surprised and hope that it is a trend.

Getting a puppy has so far accomplished exactly what I was hoping it would - and more, to my surprise. We spent most of the last two days outside playing with Spud and just playing together while he sniffed around and enjoyed himself. I was looking for something that would help Max and Alex get up and off the couch a lot more and Spud seems to be doing the trick quite well so far. He is just the little ray of sunshine that we all needed right now. I said to the girl at the rescue organization that we adopted him from on Sunday that the boys really needed a friend right now and that I was sure Spud would be that for them and it is working out perfectly. Max has loved taking him out, feeding him, playing with him and just generally loving on him.

Alex also loves him, somewhat to my surprise. He seemed a bit nervous about getting a dog as he has been a bit more apprehensive about dogs since an incident that occurred a couple of years ago. He was accidentally knocked down on our driveway by a neighbors pup and had to go to the emergency room in an ambulance to have his head checked out because daddy was out of town! Anyone would be a little nervous about dogs after all that! But, we have caught him many times just sitting on the floor next to little Spud, stroking his soft back and talking sweetly to him. He also cried last night because we weren't going to take Spud to his soccer practice with us! Obviously he is bonding with Spud too.

Ellee has taken to him as well. She was playing in her little playhouse on the deck with him on Monday evening, making him some dinner (one of her favorite things to do). He was just following her around as she talked to him and told him all about the dinner she was cooking. It was adorable. She has already nicknamed him and is calling him "Spuddy Buddy".

We are enjoying this new little life. I have probably had to tell him "no" about 50 times while writing this blog as he is picking up toys to chew in here, scratching at the carpet, chewing cords, etc, etc. But, it's worth it. He is bringing a ton of joy to all of us which definitely outweighs the work. I even found Matt cuddling up with him on the couch the other evening!

Spud is the big news around here this week. Other than him, we are starting to get into our new routine. Max has tutoring every day, Monday thru Thursday for an hour to an hour and a half with a great teacher. He really likes her and is enjoying their sessions. I am working with Max's classes room mom's to find ways to get him connected with his class. We are thinking of using Skype regularly and may see if the doctors would allow a visit here or there to the playground at recess or something (probably with gloves and a mask for protection but at least he could see some buddies for a bit). Alex's teacher has started sending things home for me to work on with him until he can attend school and we are enjoying that too.

Max seems to be feeling better this week than last and the adenovirus seems to be almost gone. Here and there he still complains of his stomach a little bit but overall he has done well getting through that virus which brings me some comfort. We haven't been back down to the hospital since last Tuesday and don't have plans to be there until this Friday for our scheduled Day Hospital visit and medication infusion.

After a tough week last week, things are looking up a bit. I can definitely say that the three children that were lost have impacted my life in a positive way. They have reminded me how fragile life is and how we need to live in the moment and appreciate every minute that we have together. I can say that I am taking the extra time just to do that - to slow down and hug or cuddle a bit longer, to listen better, just to be in the moment as much as possible.

Thank you to all of you that have signed up to walk or given one of us a donation! Max's Mighty Mob is growing by the day and the funds keep pilling up for Dr. Davies and the Hematology/Oncology and BMT units at Children's. It brings me so much joy to see this progress and to know that all of you are behind it...helping us to say "thank you" and to show Max the amazing love and support that has surrounded him throughout this journey. If you plan to walk and haven't signed up yet, we would greatly appreciate it if you could sign up by September 18th if possible. I want to place a t-shirt order by then to be sure I have enough for everyone that plans to walk. Just a reminder - to sign up or donate, see my instructions from the blog post on August 27th.

As always, thank you all for your continued thoughts, prayers and support. It means the world to all of us. More soon...

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