On the bright side, Adam is doing well. He is going STIR CRAZY, but you can hardly blame the little two-year old. He hasn't been outside to play for a month and a half. We are very fortunate, however, to have such wonderful nurses and staff who very patiently help entertain him (not to mention giving me and Mark a little reprieve, even if it is only for a few minutes--thank you, ladies!) So, we are just waiting now for his counts to recover. I have heard a little noise from the doctors and it sounds like they are not *planning* on doing a third round. This is the next best thing to my being Adam's donor. However, things can change so we remain cautiously optimistic.
It is day 45 in the hospital and the only way I can describe how we feel is by using the phrase "hitting the wall." I have never had the pleasure of running a marathon, but I am convinced this is what mile 20 must feel like. I woke up this morning and actually had to take a minute to figure out where I was.
Adam just finished his second round of chemo yesterday. This was, hands down, the most difficult one. It was only four days, but it knocked him flat. Two out of the three chemo medicines were ones he had not received before. He also received medicines to manage the side effects, and for the most part, they worked...thank goodness. He was doing much better today and hopefully will continue to feel better now that he's finished. It's back to waiting for his counts to drop to zero and then recover. We still don't know if he will have to undergo a third round before we are transfered downtown. If my understanding is correct, they are waiting to see if this round has put him into a solid remission. We won't know that until they do the bone marrow aspiration after his counts come back up.
On a very significant bright side, we have received confirmation that my HLA typing has come back as a perfect 6 for 6 match for Adam. (This is very interesting since I asked for Mark and myself to be tested just so we could know for sure that we weren't matches.) I still have to get a physical evaluation to see if I am healthy enough to undergo a bone marrow harvest (which would require anesthesia), but if I pass, I will be able to be Adam's bone marrow donor!!!!!
The more I understand about bone marrow transplantation, the more significant my being a match becomes. It is extremely rare for a parent to be a perfect match. I was told by Adam's doctor that they have only seen this when the mother and father were somehow related. Mark and I have a common ancestor on the Mayflower, but that's about it. Our transplant doctor told us that the only way I could be a perfect match for Adam is if Mark and I have some of the same genes. In doing further research, I found that the chances of us having the same genes are something like one in a million. We were also told that the chances of us having a child with an HLA match to one of us is one in one hundred thousand.
It astounds me to sit back and look at this. My faith in God, which has been incredibly strengthened over the course of this experience, allows me to see His hand in all that has happened to us. I thank Him with all my heart, for his active presence in our lives, and for the uninterrupted support that has come from Him.
Adam and Miss Holly. She's our fantastic Child Life Specialist. She makes our life so much easier.
Riding the Big Wheel in the Atrium.
Mark is showing Adam a really cool Spider Man sticker.
Painting in the Playroom.
Watching a movie.
Looking at the helicopter that just landed on the helipad. Very exciting.
"Tubie" is getting flushed with some Heprin so Adam can be free from his IV for a few minutes.
Watching for more helicopters.
Ummmm. Dinner. Apple juice and a bowl of rice.
Playing "Doctor" in the playroom.
Getting some medicine in "Tubie" from one of the many wonderful nurses we have.
Taking a picture of the helicopter.
I'll start with the bad news first. We are not going home for a break and are pretty disappointed. There are good things about going home and there are good things about staying. I am desperately trying to keep focused on the good things about staying. First, the sooner we get started on round two, the sooner we will finish. Second, I don't have to wake up in the middle of the night to hook Adam up to his meds. It really was a bummer, though, especially because of the fact that he really is in remission. That's the good news. They did another bone marrow aspiration this morning to determine his remission status now that his counts have recovered (the first bone marrow aspiration was done before his counts were good). It came back that he is in remission (<5% blasts). This is also good news as it means there is a much greater chance we won't have to do a third round before we are transfered downtown. That cuts a whole month off of treatment. Tomorrow morning, we will start with a intrathecal (in the spinal cord) dose of chemo and then sometime in the afternoon, we will officially start with round two. *deep breath*
We are technically done with round one. Adam's counts have come up nicely and he has been fever-free for about five days now. He is eating very well and he's very anxious to get out of the room. We are just waiting to hear what comes next. The results from his bone marrow aspiration came back and showed that Adam is not yet in remission, but he is close. He has 7% blasts (cancer cells) in his marrow and the doctors want to see 5% or under. We have been keeping our fingers crossed that we will get a break at home for a few days, but they are still trying to decide what the best course of action will be. Hopefully that will include a break at home, but we'll see. On the bright side, Adam is feeling much better and doing well and that's the most important thing.
We had the opportunity to go to Children's National Medical Center where Adam will receive his transplant. It was an interesting experience. We met with Adam's doctor and talked for a long time about the procedure and what to expect. We then met with the nurse coordinator and went on a tour of the unit. We were able to see a patient room on the transplant unit. All in all, it seems very nice. It was interesting to me to note that I actually felt "homesick" for Inova Fairfax Hospital where we have received all of our treatment so far. I am sure we will get to know the nurses and the doctors downtown, too, but I sure will miss everyone here.
It sounds like the transplant will go much like a regular round of chemotherapy. We will receive eight or nine days of chemotherapy that will irreversibly wipe out Adam's ability to fight infection, then one day "off", then the day after that he will receive the bone marrow transplant through his central line just as if they are giving him his usual blood transfusion. Then we wait for counts from the new marrow to recover and hope that we don't have many complications, i.e. Graft vs. Host Disease. We were told this process generally takes about six to eight weeks.
Adam was having a really good run there for a while, but now has come down with the dreaded infection. Two days ago, he developed a fever and results from several different blood cultures have come back positive for Strep and Staph infections. This, unfortunately, is terribly common in neutropenic kids. He is receiving intensive antibiotic treatments to keep everything under control until his counts can recover and take care of the rest of those darn bugs. So far, there is no indication that his counts are on their way back. Today marks day nine at zero. During Round Five of last year, we spent 12 days at zero. So, we most likely have a few more days before we see some action in his counts. All in all, Adam seems to be in good spirits.
The night staff thought I was a *little* weird, but I couldn't help it I was too excited. Anyone who was around last year knows how hard it was on us that Adam would not wear his mask. Lo and behold, one night last week, he told me he wanted to try wearing one. He actually let me put it on and when I let go, he didn't take it off. It may sound really silly when I say I can't remember the last time I felt so liberated. Of course we immediately had to call dad on the computer to show him the cute mask covered face. Mark was just as thrilled as I was. This means no more endless walking in circles around the unit in the plastic covered stroller. This means Adam gets to go with Momma to the Nutrition Center to get food. It also means that he can go outside to the pediatric atrium and play to his hearts content. I simply cannot express what a mile stone this is. Hooray for our mask wearing Adam!!!!!
It's funny to see the contrast between Adam and Russell. Adam desperately wants to get out of the room, and rightly so. It's no fun to be cooped up with nothing to do. Russell on the other hand, cannot wait to go to the hospital. Every room on the floor has a Nintendo Wii and Russell can't get enough. As far as he's concerned, it's Disney World. In the picture below, Russell is concentrating very hard on his game of Wii Golf. Before he started golfing, he was beating me and Mark at Wii Bowling by a good 50+ points. This kid's computer gaming skill set is simply impressive!
On a whole, it's been a good week so far. Adam's counts are still at zero, so we continue to wait until they recover. When they do, he will have another bone marrow aspiration to see if he is in remission. At that point, we will know more about what the next round of chemotherapy has in store.
We are so grateful for all the support we have been receiving. Prayers, thoughts, notes, calls, cards, emails; they are all so encouraging. The Lord has blessed us so much and we are well aware of His blessings that come through you. Please do not underestimate the power of your prayers. We are strengthened on a daily basis because of them. Thank you!