The Plain Jane Diaries

It's been several weeks since I've posted, and many times over those weeks I opened my laptop only to close it minutes later with empty words in my thoughts. Let me start by saying that today, our little N looks as healthy as I could have ever hoped. He laughs heartily, he runs and tumbles without fear, he eats and eats and eats, and best of all, he wakes up smiling, and goes to bed at night laughing with so many things to share about his day that I have to build in an extra 30 min chat period at bedtime. As I think about how far he has come in the past year now, there's no way I can describe the depth of gratitude and relief and utter joy that consumes me at random moments when I look at him. The normalcy of day to day life, something I found so monotonous at one point in my life, now brings color and excitement in my day.  As for me, since I last posted, I have probably reached the most difficult and broken point of my life emotionally especially after realizing that e...

N continues to thrive and be doing well. It's been such a source of joy for us to see a little bit of normalcy for him. He's eating, playing, smiling, and we are able to go out and do things with some caution. He's doing incredibly well, but... what about me? This past week, I had a little bit of a scare. While I was driving I experienced some numbness in my limbs and I of course went into panic mode thinking I must be having some kind of heart attack or stroke. A quick phone call to hubby and he assured me that either one was not the case for me. But since then, I've been battling a number of things internally, mentally, physically, emotionally... I found out that my vitamin D level is very low, so that explained the numbness. But what has really shaken me this week is my response to everything that's been going on since then.  In looking back, when we went through N's first diagnosis, I handled it fine. Almost too fine. It's like I almost didn'...

I am surprised to log on and realize that it's been well over a month since my last post. So much and so little has happened since my last update. N continues to head towards his 100th day mark in good, strong condition.We are almost there! Our biggest hurdle in acclimating back into life at home was initially largely related to his eating and appetite. His body had been through so much that it took his taste buds some time to kickstart again, and when it did, we were dealing with a lot of indigestion and upset stomach issues. Somewhere near Christmas, however, he made a turn for the better and I could see a clear difference day to day in his energy level, the color returning to normal in his face, and he also started to look more relaxed and "normal." On February 1, we are scheduled to run another slew of tests to commemorate his long relay to the 100th day since transplant. I will say, however, that in recent weeks our biggest struggles with N have not been his p...

Greetings! I know it's been a while since our last update. We are essentially on house arrest since N cannot go out into public yet. What does this mean? I'm stuck to him like white on rice with nowhere but the next room to roam to. We do have a nanny that comes for several hours a day, so having her here has allowed me the freedom to step out and catch my breath and run errands as needed. Her being here has probably been my sanity saver! In general, I will say that N has been doing very well. We got confirmation this week that his cells are 100 percent W's at this point. Only his T-cells are 97 percent W's, and we will check progress on that in another month. The team is very happy with how his body is taking the new bone marrow. Little brother did not miss a beat. He was back to normal, roaring and pounding his chest half naked just 4 days after transplant (because that's apparently what the Hulk does). The only evidence of transplant for him are 2 little heroic...

We are day +23 today and going strong! N has only had some issues with chest pains since coming home, which doctors have so far attributed to bad reflux. They explained that though he looks great and has been doing great, transplant nonetheless requires a significant amount of healing. So he may be sensitive to any change in diet from what he was accustomed to in the hospital for the weeks we were in there. I was pretty nervous leaving the hospital, armed with a tight schedule of about a dozen pills I need to give him daily. I double, triple check every bottle and every pill before his doses, I scan his body for any changes, I take his temperature if I think he MIGHT look a little different, and most of the time I'm thinking about how to get him to eat. In N's mind, he is excited to eat foods that he used to enjoy, but at every meal, after one bite I can just see the disappointment sink in on his face. His palette just isn't quite right yet and meal after meal, he gets di...

We are going home today.....!! SURPRISE! Yesterday, the doctors came and saw us and because he has done so well, and because his numbers continue to rise (meaning his bone marrow is taking), and because N asks every day when he can go home, the doctor graciously told us to get out of here and spend the weekend at home. After the doctors left our room, N turned to me, smirked and said, "Well... guess that means I broke the record after all," with some smug satisfaction. He was trying to break the hospital record for shortest transplant stay. Goals. As we pack up and prepare to leave here, I am quite honestly left without words. We have heard nurses and doctors repeatedly say things like, "In my 17 years here, I've never seen anyone fly through transplant like this." And I hold back tears every. time. As N's knowledge of science and medicine deepens in the future, he will in retrospect see God's hand in all of this, and how much prayers sustained him...