Wednesday, October 21, 2009

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)

Monday, October 12, 2009

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)

Sunday, October 4, 2009

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, 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 is 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
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)