Adam's BIG, HUGE Day!

Adam was invited to participate in the "Pilot for a Day" Program with Andrews Air Force Base. We were excited when we learned Adam was the next participant, but we had no idea what crazy fun awaited us. We are still spinning from the experience. Mark posted a synopsis of the day on his family forum so I am not going to try to repeat everything here. I'm just going to copy and paste. He's much better at remembering these kinds of details anyway. (Speaking of which, *Disclaimer*, please forgive us if we got any details wrong. We certainly don't mean to give misinformation. It was just a long day with a lot of details to remember.) All right. Here we go....

Adam with his new best friend, host pilot, Lt. Frank Gilliard

Adam's "Pilot for a Day" actually started on Monday. We met the program coordinator (Lt. Col. Rob Balzano) and Adam's "host pilot" (Lt. Frank Gilliard) for lunch at National National Harbor, where they presented Adam with a real USAF flight suit and jacket, complete with a patch with his name on it. They had also worked with the Gaylord hotel to put us up in a suite for the night and with restaurants to feed us lunch and dinner. The hotel was amazing-- 

We also got to take Adam swimming for the first time in his life that evening, as he just got clearance from his doctors. He had a wonderful time being in that much water. He didn't want to get out.  

We got up Tuesday morning and met Lt. Gilliard in the lobby at 0830 and then we all drove over to Andrews. As we drove around the base, we passed a large LED sign on the main thoroughfare that read "Andrews AFB welcomes our 'Pilot for a Day' Adam Henshaw and his family and friends." Nice.  

We arrived at an office building where they were flying a large sign that said something very similar and we were welcomed by several other pilots from the 89th Airlift Wing, the 459th Air Refueling Wing, and the 113th "Capitol Guardians" Air National Guard wing. They escorted us into a conference room where maybe ten other people were waiting with breakfast. They kicked off the day with an opening ceremony, where the Commanding Officer, 459th, Col. Mike Allman had Adam (dressed in his flight suit) repeat an oath making him an honorary Air Force pilot and putting him under orders to "ask questions, smile a lot and have as much fun as military regulations allow."   

Our first stop on the base tour was the 459th hangar where Adam got to watch the Andrews security team give demonstrations with a bomb-sniffing dog and a German Shepard attack dog. Adam loved the dogs. Immediately after, we got to board a KC-135 Stratotanker. The unit had painted Adam's name under the cockpit window--P.F.D Adam Henshaw. Adam got to sit in the cockpit and Russell spent some quality time in the back lying on his stomach at the refueling boom controls. The KC-135 is a modified Boeing 707 that can carry 200,000 pounds of fuel--enough gas to run a family car for 30 years nonstop. Lt. Gilliard, by the way, is a KC-135 tanker pilot.

Our next stop was at the 113th hangar. The 113th flies F-16 "Fighting Falcons" and is the unit charged with enforcing the airspace restrictions around Washington DC--they were the ones who were in the air on Sept 12, 2001 with orders to shoot down any planes trying to fly into the city. The 113th had an F-16 with Adam's name stenciled on it and we got to take some pictures next to the planes. We didn't get to sit in cockpit of that one, but our next stop was at the 113th training/office facility where Adam and Russell both got to fly an F-16 simulator, put on a real flight helmet, check out a night vision monocle, and see other kinds of pilot gear. One of the F-16 pilots landed while we were there, so he came in dressed in full pilot's gear and talked with Adam and Russell in the hallway.  

Adam at the controls of "Bumblebee"

The next stop was across the base at the hangar's of the 89th Airlift Wing. The 89th is a unit that flies Air Force One, and smaller aircraft to ferry around senior military officers (3- and 4-star generals, admirals, etc) and high ranking government officials (cabinet secretaries, Congressional leadership, etc). On their Tarmac, they had a special surprise for Adam--a medical airlift helicopter like the one that had flown him to the hospital the day he was diagnosed with leukemia came in and landed right in front of us. Adam ran up and gave the flight nurse a hug when she got out, and he got to spend some quality time in the cockpit of that one. Then, the Maryland State Police landed one of their larger medical helicopters and their pilot had another surprise--he offered to give Adam a ride! So Adam, Russell, and Dad got to fly in the helicopter. Adam was in the co-pilot seat while Dad and Russell were in the back. Then, without warning Dad first, the pilot asked Adam if he wanted to fly the helicopter. Adam, of course, said yes and the pilot took his hands off the stick and let Adam move the helicopter around the sky. The pilot then said, "Dad, that's your son flying." Dad was thinking that it was a good thing this was a medical helicopter, as he was about to have a heart attack. 

Adam making his pilot announcement

They landed the helicopter and we all got to eat lunch aboard a Boeing C-40B (a modified, *very* swanky Boeing 737). Then, to get us to our next stop, Adam was asked to be the Captain of the plane while they taxied us across the airfield to the Air Traffic Control Tower. Adam got to make the announcement over the intercom--"This is Adam Henshaw. I will be the pilot on this flight. It might be a bumpy ride. I'll do my best." (Something to that effect). We taxied over, deplaned, and got to climb up to the top of the ATC. While there, we watched some F-16's take off. Once that was finished, our final stop on the tour was the base Fire Department. Adam, Russell, and Mom got to ride around in a real pumper truck, fire the water cannons, and handle other fireman gear. That unit gave Adam a blanked and a real fireman's helmet (used, complete with fire damage).   

Clearly, it's been a long day...

At that point, we were all wearing out pretty good, but we were almost done. They took us back to the 459th conference space for the closing ceremony. Lt. Col. Balzano had put together a slide show of pictures from the tour. Then all of the units that had taken part on the tour gave Adam presents--unit patches, challenge coins, toys (all airplanes, naturally), t-shirts, stickers. The Fisher House Foundation, an organization which provides housing next to hospitals for the military much like the Ronald McDonald House, also participated in the presentation with a very generous gift of about five presents. And to top it all off, Check6 Foundation presented Adam with a very unexpected financial gift to put towards flight lessons when he gets older! After that presentation, we had an informal reception including a cake with Adam's name on it as well as the "Pilot for a Day" logo.

So it was a busy day. I haven't included everything we did and saw, just the highlights. It was an amazing day, and was a great reminder why the US has the best military in the world--it's populated by some of the best people the country has to offer. It was fun to feel the "military is a big family" feeling again and to see how willing the military is to adopt people into that family. 

We really did feel like family by the time we left. It was absolutely incredible to witness the amount of effort that went into creating this day. We had no idea it was going to be this big. I spent a good part of the time desperately fighting back tears. The contrast of Adam in the hospital and Adam in his "very happy place" was sharp. It was especially difficult to hold back the tears (I failed miserably) when the medivac helicopter came. We had spent countless hours, day and night, watching for "Bumblebee" (Adam named his helicopter that because it was yellow and black) while he was sick. It seemed to be the one thing that would take his mind off of therapy. So when that helicopter flew into view and we could tell it was a medivac helicopter much like the one he had adopted as his own, my mother heart burst wide open. It was a gift to my son that no one else will ever understand. It would have been more than enough to have just the one helicopter come in, but shortly after it landed the second one appeared. I'm not certain Adam knew what to do with himself. And I never in a million years expected him to be taken for a ride, much less fly the machine. 


Needless to say, we are deeply touched by this entire experience. It is certainly something we will never forget. To the entire group who put this together, to those who participated in any way, and to Andrews Air Force Base, WE THANK YOU!! A million times over. I didn't think it was possible to experience as much joy and excitement as we've experienced fear and heartache. But you did it. You pulled it off. And we are forever grateful! 

Thank you to Lt. Col. Rob Balzano for providing this slide show.
We love it!

No News Is Good News, Right?

Adam had a blast at the church activity for the kids. It was a water
service day where the kids were able to help wash cars and have
water fun as well. You can see he is soaking wet. He was in Heaven!!!

Actually, I do have news. Good news at that! I will start with the news we've been waiting for. Adam had his one year post transplant aspiration (yep, that's right, one year...post transplant...can you believe it? I can't...). Anyway, he had his one year post transplant bone marrow aspiration last month and his bone marrow came back clean–100% donor cells!!!! This is beyond great news. Adam's doctor said that though there is still a risk of relapse, it is small compared to what it was during the first year after transplant. He gave us permission to exhale. Which is huge. In many ways, HUGE.

Adam is preparing to go to preschool and is so anxious he can't stand it. It's just another way in which we get to move forward and one more thing we can put between us and his treatment. It's seems very strange to finally be switching focus after we've spent so many months completely and wholly concentrating on getting Adam better. The more time that gets between treatment and us, the more we realize just how consuming it really was.

And not only is Adam preparing to go to preschool, he is also preparing to become a big brother sometime in April. This was unexpected, but thrilling to Adam nonetheless. He has always been aware of, and loved, babies. It will be really fun to watch him with his little brother or sister. When I told him I would have to go to the hospital to have the baby, he became very attentive and reassured me very matter-of-fact, "That's okay, Mom. I'll sleep right next to you. I'll take care of you and baby." It was something I would constantly tell him while he was in the hospital, "It's okay, Adam. I'm right here. I'll sleep right next to you."

There are many issues we still have to deal with, but with the one year post transplant milestone met, and a new addition to our family to anticipate, we're finally feeling some excitement for the future. Hopefully, it will be much less eventful than the last two!

We went to the Inner Harbor in Baltimore. It was a lot of fun and the boys wore us out. Here, Adam is peering through
a window over the top of the officers quarters in a ship docked in the harbor. Too much fun!

I LOVE Good News!!

The results from Adam's 9-month bone marrow aspiration are back and they look great! He still has 100% donor cells in both his bone marrow and peripheral blood and his cytogenetics came back normal (which means they didn't find the gene mutation that caused Adam's leukemia in the first place). This is all extraordinarily good news. Now, we continue to focus on reigning in his Graft v. Host Disease and look forward to having a really nice summer...at home...which we haven't had for the last two years. What a blessing!

One Year Ago Today

I simply can't let this day end without commenting on its significance. It was one year ago today that we learned Adam had relapsed. There really aren't any words to express the emotions, particularly fear, we felt when we realized Adam's cancer was back. I remember sitting outside the sedation suite at INOVA Fairfax Hospital, pleading with the Lord not to make Adam go through all of the chemo and subsequent transplant if it wasn't going to work. I couldn't bear the thought of him having to suffer through all of that treatment simply not to make it in the end. It has been a major roller coaster and we are still on the ride, but Adam is here and he is thriving. 

We have been pretty restricted since we were released from the hospital. Adam's GVHD (Graft vs. Host Disease) has required that he be on steroids and imuno-supressant drugs for the majority of the post-transplant period. It's been an intense experience to be stuck at home with a three year-old on steroids. We look forward to the time (hopefully later this summer) when Adam will be steroid-free and we can resume some normal activity. 

One of the things that has kept us busy is our garden. Adam is a self-proclaimed farmer, "just like Grampa." He loves to check the plants and see what new "baby" vegetables are visible. He is especially proud of his baby bell pepper. The first two pictures above are of Adam by the garden. The third is of Adam just outside of Russell's school. 

Now We're Havin' Fun!

Well, it's official. Adam has been put back on Cyclosporin to calm down his GVHD. It's been a real bummer. Not having to take medicine every 12 hours was so nice, but, it was not meant to be...at least not for now. The good news is, Adam's GVHD has responded very well to the meds and it seems to be calming right down. He is not a fan of taking the medication again, and frankly, neither are we. But while being irritated with having to take the meds, we are also very thankful we have them to take, if that makes any sense.

In the meantime, with the warmer weather, we are starting to have some fun. Our family went on a little field trip to the local Rescue Squad. Russell had a great time and Adam, well, he was just in heaven! There were three Ambulances and one Rescue Truck and they were able to get in the cabs and pretend like they were driving. They also got to see the lights flashing and wear the headphones that the first responders use to communicate. They absolutely loved climbing all over the rescue truck and even got to get in a rescue boat! I'm tellin' ya, just too much fun!

After we got home from our visit, Adam ran around the house, twirling circles on his head with his fingers (lights on the firetruck), humming the siren and yelling as he raced by, "Look at me, Mom. I'm fireman Adam. I got to help somebody..." Thank you, Mr. Dan, for sharing your work with us and for taking the time to help create some fantastic memories for our two little boys. We really appreciate it!

The Results Are In...

...and...Adam's bone marrow is still 100% donor cells! Fantastic news, yes indeed. I was a little nervous, admittedly, given we are are in a high-risk-for-relapse period. It is very reassuring to have those numbers back. His counts look great and he seems to be doing very well in that area.

Unfortunately, the good news is overshadowed by the results of Adam's liver function test. For a little while now, I have been worried that the GVHD (Graft vs. Host Disease) was on it's way back. The blood test confirmed my fears. It appears that the graft (donor cells) is attacking Adam's liver. I don't really know how serious this is, but it's bad enough that Adam has been put back on steroids. We have another follow-up visit in a couple of days at which point they will repeat the tests to see if the steroids are working their magic. In my maternal opinion, I think they are. The redness around his eyes is subsiding and he is feeling much better...not nearly so irritable. I don't really know what the next step will be. I'm sure that information will come with the results of the next blood test.

To be honest, I am a little discouraged by the return of Adam's GVHD. Okay, a lot discouraged. It's just one more reminder that we aren't going to be finished with this for a long time. Given that we've been at this for just shy of two years now, it's really overwhelming to think that we are nowhere near the end––if there even is an "end". However, somehow, I seem to find the energy to get up and leave the pity party I've thrown for myself, just long enough to remember that I don't have to look very far to find that our situation could be worse––in many ways.

So, on that note, for the present, we will focus on the fact that Adam feels good and is happy and is able to play. That's reason enough to simply keep fighting.

Our Six Month Milestone

It's really been six months since transplant. I know, I can't believe it either. I'm not a fan of how time can be so warped. But, here we are. Adam had his six month bone marrow aspirate two days ago. He, like always, managed like a champ.

We had to do an Echocardiogram before the aspirate to check on his heart and make sure there aren't any major issues that may have been caused by the chemotherapy. We don't have the results back yet, but soon, I am told. While he was laying on the table with his little bare chest covered in green goop, he looked up at me and said, "I don't like this hospital." To which I would reply, "I don't like any hospital." When the technician opened the little green bag of wipes to clean off the gel, the smell hit me in the face like a belly flop in a swimming pool. The emotional memories that smell brought back were as vivid as if we had just finished transplant yesterday. I was really glad to leave cardiology. Adam wasn't all that disappointed either.

The restrictions placed on Adam are starting to be lifted. With the completion of the Cyclosporin (anti-rejection medication), he is not in as much danger as he was before. We must still remain cautious for a little while longer, but it's nothing compared to what we had to do when we first came home. We are looking forward to summer and can't wait to introduce Adam to the "swimmin' cool." It will be the first experience he can remember (he's only gone swimming once before) and he is really excited about it. We will also be able to go back to Grandma and Grandpa's farm, which will be great fun! Nothing like checking cows with Grandpa and giving hugs to Grandma. But...for now...it really is one day at a time.