Another Adam Update

Oh, hurray the snow is melting! We had the joy of finally going outside for a walk yesterday and were completely surprised to see how much snow had melted. We can actually see grass! The boys have had a lot of fun with the snow, though, so I can't really complain too much. We had six snow days (no school) and one holiday (Presidents Day) which gave Russell a mid-winter vacation of 11 straight days at home (including the weekends). It has all been pretty impressive.  

As for Adam's progress, he continues to do well. We are one week away from being finished with the Cyclosporin (anti-rejection medicine). As exciting as that is, it's over-shadowed by the very slim possibility that his GVHD could return. We are hopeful that his new bone marrow has settled in and won't be anxious to start causing problems again, but we'll only know for sure after he is completely off the medicine. 

We also have his six-month bone marrow aspiration coming up in March and it will be a huge relief once that is over and results are back. If I understand it correctly, Adam's risk of relapse peaks at about six months post transplant and then starts to go down from there. So, until then, we continue to move forward, praying this journey is coming to an end.

It's About Time...Don't Ya Think?

So...I'm thinking it's probably time for an update. You could safely say the last month has gone rather smoothly. We had his central line removed before the end of the year, which has given us back a great deal of freedom. He's also successfully navigated through two follow-up visits and managed the traditional blood draws like a champ! (I was really nervous. One can become very dependent on the central line.) He even insisted on sitting in the chair all by himself while the nurse drew his blood. My baby is growing up! Adam also completed his steroid regimen before the end of the year and now his chubby cheeks are disappearing. Not necessarily a bad thing. Actually, it's a good thing. We just miss kissing those adorable "cheekies". 

Now we are currently tapering Adam's Cyclosporin (anti-rejection medication) and look forward to finishing that by March! It's done a great job doing what it's supposed to do, but to be honest, I will not miss that stuff. With the completion of the Cyclosporin, our opportunities to re-engage in the outside world open way up and hopefully by Summer, we can feel like we are back in the swing of things. 

One more noteworthy event I just have to mention is that Adam came down with a sinus infection and managed to deal with all by himself!! Even his doctors weren't worried. I know it sounds really silly, but I was so stinkin' excited to see Adam could get sick and not have a fever or all the other unpleasantness that he usually would experience. And to add the very sweet cherry on top, we didn't have to go to the hospital. I honestly think that this has been the first time this has happened. Woo Hoo for a working immune system!

Dad took Adam to Tractorpolooza at Claude Moore Park. 

Adam was in heaven with all that farm equipment!

The Magic Number Is 100!

It snowed all day long and we couldn't have asked for a better way to celebrate reaching our magic number. Today is day 100 post transplant. We still have to observe some isolation restrictions, but just the simple fact that we made it this long is huge. Adam had a bone marrow aspirate this last Tuesday and the results came back with 100% donor cells (ba-da-bing) and no sign of Leukemia. He is in high spirits and is very energetic. Hooray for miracles!

Okay, so...back to the snow. We figured after it reached well over 12 inches that we should probably go shovel our driveway. The boys were more than willing to suit up and come join the fun. Russell played hard in the big snow drifts, and Adam was completely content to use his new snow shovel. The boys had a blast! Mark and I didn't enjoy it so much, but I suppose shoveling piles of never ending wet stuff has a tendency to suck the fun out of it. However, even with the pulled muscles and the sore backs, we are so thankful for all of our blessings. What a remarkable day!

Wishing You A Great Thanksgiving Weekend!

It's Day 77 post transplant. Can you believe it? I have to say I am so thankful time has passed quickly. And it feels really good to be closer to the end of the 100 days then closer to the beginning of them.

Adam has been doing really well. He responded nicely to his treatment for GVHD and is currently being weaned from the steroids!! We cannot express enough jubilation about that. Adam has also had his NG Tube removed which brings mixed emotions. It is so wonderful to see our boy without the tube in his nose. It's one step closer to the end. However, it was the handiest thing for giving him his medicine. I really miss it for that one reason. Adam has managed to take his meds by mouth, but it's not without a fight. Oh, and to add a cherry on top of it all, he is potty training!!!!!! Started yesterday morning and has done GREAT. Who saw that coming?

Russell and Adam walk together on the path that encircles the main house at Monticello.

A couple of weeks ago, our family managed a little break and went down to Monticello for a day out of the house. It has been a tradition we have loved ever since Mark and I were married. We missed the last two years for obvious reasons, so it felt really nice to celebrate Adam's successful transplant by resuming our visits. Because of Adam's restrictions (going inside crowed places), we didn't tour the house, but that's okay because our favorite part of Monticello is the Vegetable Garden Terrace anyway. Mark and I could spend hours walking up and down that fantastic garden. Needless to say, the boys loved it too. They could run and play at will and it just felt so good to be outside!

Adam is playing on one of several stair cases that lead from Monticello's vegetable garden down to the orchard and vineyards. Here he is pretending to be "Darth Vader" from Star Wars.

Adam has become quite the chef. He prefers to be in the kitchen whenever we are cooking. He has actually learned to make his own "scrambled eggies". Here, you see him doing just that. The only thing he doesn't do is actually scramble them because that would be getting way to close to the stove!

As for Thanksgiving, we enjoyed the day here at home all by ourselves. I think that has to be the most peaceful holiday I've experienced. Not to say that we don't love spending the holidays with family and friends, but it was kind of nice to have the pressure to be ready at a certain time relieved. The boys enjoyed helping make the rolls and the ice cream (which I think was their favorite part), and Mark and I enjoyed making a fantastic meal and christening our dining room by eating our first meal in there since we moved in two and a half years ago.

It was a remarkable feeling sitting around the table with all of our little family together. We hope you had a wonderful day with family and friends as well. The people we love really are one of the most important blessings we've been given!

With all our love and best wishes for a happy holiday season,

The Henshaws

Be Brave & Shave

Meet Dr. Horn. This wonderful woman was Adam's admit oncologist when he was first diagnosed. She was a remarkable support to us on our journey through treatment. I honor her here with this post for the remarkable work she is doing with our children with cancer. This is a news segment which features Dr. Horn having her head shaved for the "Be Brave and Shave" campaign. We thank you, Dr. Horn, for your tireless efforts in finding a cure for cancer and for giving families like us a chance to hope.

52 Down...48 To Go

Can you believe it? We are actually half way done with our 100 days of isolation and we've almost been home for an entire month. I do have to say, however, that the last for weeks easily rivals Transplant as being the most difficult period of time during Adam's entire treatment, last year included. But, we continue day by day and it seems that we are surviving...barely.

Adam has been progressing very well. His counts have recovered and he is red blood cell and platelet independent (meaning, he doesn't need transfusions). His Graft vs. Host Disease seems to be controlled nicely by the steroids and we are hopeful he won't have to be on those for very long. He has a great deal of energy and a monstrous appetite. We are so thankful that he is doing so well. We are far from being out of the woods, but are so thankful we've been able to come this far without many complications.

All in all, Adam is thriving. He continues to be monitored by his medical team on a weekly basis. Adam looks forward to our trips to the doctor's office. It's usually the only time he gets to go anywhere. Hopefully with the end of isolation, that will all change and he can finally get to explore the world like a three-year-old should!!

He's Home!

Actually, Adam has been home since Tuesday. It took all day to be discharged, but we hit the road about 5:30 PM and made it home about 7:00. On the way home, Adam had to point out things as if he hadn't seen them in years--"Mom! A tree!" and "Mom, look at the fountain" followed by "Mom, there's two buses!!" He was fascinated by the outside world and well he should be. Adam hadn't seen the outside of his four hospital walls for 37 days.

We made it home safely and immediately set about getting his medicine ready for the night and situating sleeping arrangements. I wish I could say we've settled into a routine, but we haven't. Chaos still reigns.

Friday I took him to his first follow-up visit. It was a day long trip. Blood work was done and the doctor examined him and the conclusion was reached that he has developed GVHD (Graft vs. Host Disease). Though a certain diagnosis isn't really made until a skin biopsy is taken and evaluated, Adam's doctor said the GVHD has presented itself in a classic manner. She's pretty certain, even without a skin biopsy, that that's what it is. Adam is covered in a rash from the sides of his head down to the tops of his legs. He has become extremely irritable and just simply feels lousy. The treatment they've chosen for Adam's GVHD is steroids. This is perhaps the most necessary evil I have ever encountered. Adam on steroids is enough to leave me huddled and twitching in a corner. It breaks my heart to see my baby have to go through this, but I am praying this won't have to last every long. We have another follow-up visit on Tuesday, at which time his condition will be re-evaluated and hopefully (keep your fingers crossed), we will have a better idea of how long we have to keep him on the steroids.

It's been a really stressful being home. There are certainly benefits that I am enjoying, like taking a drive in the car, eating our own food, being able to walk to different rooms, etc., but, I have to admit, I really miss the nurses button!