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)