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!

We've Been Waiting For This Day!!!

I think we're still stunned that this day has actually arrived. Adam's ANC has now been over 500 for two days! What does that mean? A lot of things, actually. First, the bone marrow is working (I have to admit, I'm pretty proud of my little stem cells). Second, the risk of infection is slowly decreasing by the day, and third, WE GET TO GO HOME!! We are not certain which day is the big day, but the doctor's told Mark this morning that it's just a matter of coordinating home health care and then they will cut us loose. It is exciting, and I can't wait to have my family back together again, but I am a little nervous. It's somewhat reassuring to know that you have a nurse nearby at all times if something were to happen. Not having that resource at home is going to be the cause of some anxiety. However, I suppose our very frequent office visits will help alleviate some of the stress. It will also be more and more reassuring as each day passes and Adam continues to heal. We will certainly keep you updated as we know more...

This is a snapshot of Adam and Mark during our video conference

this morning. Adam is looking forward to getting "in the car and go(ing) for a ride." So are we Mr. Mighty Man!

Ye-Haw!!

Adam's ANC is FINALLY climbing!! Monday it broke the 100's with 110. Yesterday it skipped up to 140, and today it climbed up to 232. His appetite and energy are returning and with them come the smiles. He is also starting to ask to go outside. Good thing we are almost at 500. He won't have to wait too long.

Well...What'd You Know

...Adam has an ANC! The doctor's said they expected to see something either yesterday or today-- and they were right. I have to admit, I was a little more skeptical, but, here it is. Adam's ANC was 20 yesterday and it's 30 today. His counts are coming back! It's still early to get really excited, but as each day passes and his counts continue to go up, we expect our optimism to grow as well. Hopefully in the next few days, we will have a better idea of what to expect as far as how long we will have to be here. But until then, we take our small victories where we can get 'em!!