The Plain Jane Diaries

We continue now waiting for his blood counts to start going up, which they say would happen around day +14, because that is the "bingo" moment that W's cells have woken up in his system. From that point on, he will have a new immunity courtesy of lil brother. Until then, he has nothing. So we simply need to be vigilant about keeping him free of infections, and then as the new cells graft into his system, the doctors are alert for signs of skin rashes that may irritate him if not tightly controlled. Beyond that, our concern would always be what they call graft v. host disease, a condition where his new cells see the body as a foreign system and starts to attack itself repeatedly. This is something to be concerned with for about a year. The chances of that happening are there, but less likely when you have a perfect sibling match. So the big question: how's he doing? They told us to be prepared for what is to come. They told us rarely do transplant patients do okay ...

We have arrived to 6 days post transplant, and 8 days post chemo... and still... no signs of any sores, infections or complications. His counts have now bottomed out, and he has no immune system whatsoever at this point. We are certainly not in the clear yet as we are still within that crucial window, but the fact that he is doing so well at this point in the transplant is pleasantly surprising to virtually everyone. He has even been maintaining his weight WITHOUT a feeding tube! We never could get him on board to getting that thing in, and I think with the possibility of having to insert a tube up his nose and down his throat looming in front of him, it motivated him to eat. In fact, for the past 4 days he has weighed exactly the same, down to the tenth of a kg. The nurses stand in shock every morning because apparently, they have never had a patient weigh so exactly consistently! Today, one of them turned to him with wide eyes and asked, "Are you a robot?" He smirked, shrug...

Since my last post, I'm happy to report that it has been pretty uneventful! N has mentioned a few times how scared he was the other night, but aside from that his spirits seem to be ok and he is smiling and feeling better. We are now 4 days post transplant and 6 days post chemo. As expected, his counts are now plummeting and so as we enter the 7-10 days post chemo window, we are anticipating the side effects to begin surfacing if they do at all. Given that his appetite has gone down despite feeling ok, we are in discussion about putting a feeding tube in either today or tomorrow while he still feels good. If we wait beyond that, it would be much more painful to get the tube in if he has any sores so now is the time to get that thing in if we plan to do so. If we can get N on board with it, we are likely going to opt to put it in so that we won't have to worry so much about his nutrition. Doctors are funny. On one hand, they say things like, "I want you to be realisticall...

In general, there have always been 2 things in life that have come easy for me- being positive and staying calm in the face of most given situations. In college, I was definitely that annoying roommate who cheerfully pranced around the apartment, chirping along with the birds early in the morning, smiling because being nice is fun. And that, my friends, was before I discovered coffee. Just thinking about that makes me want to slap myself, and call all my old roommates just to say sorry for the early morning cheers. So I have to confess that though many of you may think otherwise based on what you're reading on my blog, I wanted to be transparent and admit that, positivity, what used to come so naturally to me, has been an intentional and conscious effort for me recently, especially in the past week. Though my hubby has been sleeping at the hospital every night, yesterday I sent him home to sleep in a bed and recharge. I took over the evening and night shift with N. Around late ...

Today is D-day. W's procedure this morning was a success! He rolled into that OR happy as a clam, ready to embrace the day. Oh ignorance is indeed bliss at times. He really hadn't fully grasped what he was stepping into, but God created him with an easy going personality that just makes things easier on the rest of us sometimes. And today was certainly no exception. We got a delayed start of about 30 minutes, and he ended up being in the OR for almost 2 hours. During the procedure, they paused to spin his bone marrow to determine if they have enough cells for N. They found that they needed more, so they went in and extracted again from his hips, making his time in the OR slightly longer than anticipated.   The great news is that they got the perfect amount- plenty to give N an extra boost and potentially put him into recovery a day or so faster, but not too much to cause any complications. After our littlest woke up, we wheeled him over to see his big brother in his room. T...

Today is our day of rest! We no longer have chemo (ever again, God willing!). Yesterday we gave him the big chemo that is the culprit for any discomfort he would have here for the next several weeks. As expected, his nausea has worsened since yesterday and we anticipate it continuing to do so for at least another day or 2. Thank God for the plethora of anti-nausea medications at our disposal to alleviate that as much as possible for him! After that, any signs of the sores would start to rear its ugly head around the end of this week at approximately 5-7 days from chemo. It is also when his counts would be tanking. Tomorrow, DAY 0, at 7:30 am, our littlest hero will be wheeled into the OR to save a life. He already knows that he isn't going to school for a few days, but when we talk about how awesome his choice to share his healthy cells with his brother is, he just grins from ear to ear. He probably won't be grinning when I wake him up at 5:15 am to get him to the hospital by...

Now begins the conditioning period leading up to Day 0, which is what they call Transplant Day. Yesterday morning, we put N in the bathtub and shaved his head so that he wouldn't have to watch his hair fall out in the hospital. He stoically stared in the mirror as his dad took off the hair he guarded from us for several months. He has outright refused any sort of trim or cut since July knowing this day would come for him. I had no idea a son of mine could look so much like Bruce Lee... minus the swole physique of course. We tried to keep it as lighthearted as possible, but it was hard to ignore the tears welling up in his eyes as he watched it dwindle down to nothing but the scalp. He stayed strong, though, and kept the tears to himself. I think maybe he was trying to stay strong in front of his brothers, who he lovingly refers to as the VonBooger Twins. It was a struggle getting him out of the house. He knew this stay would be the longest one yet, and so he got very creative y...

As we approach transplant day, I have been asked to provide some specific prayer requests because it's hard to know what exactly N is about to face. So today, I humbly ask for the following requests specific to our time in the hospital that begins on Oct. 18: From what I understand, the side effect that would likely cause the most discomfort for N are mouth sores. These are not the little mouth sores that you and I get when we are tired, but these are excruciating, oversized sores that cover his tongue, mouth, and can run down the lining of his throat and his entire GI tract. These sores can be so painful for him that they may require heavy pain medication in order for him to swallow, and also be so overwhelming that it causes repeated vomiting. Many patients end up having to get a feeding tube of some sort to get them the nutrition they need. So as you can see, this seems to be the big one that the doctors want me to be prepared for. (How does anyone prepare for something like...

2 Corinthians 4:17 For our present troubles are small and won't last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! Clinic yesterday was uneventful, which is always a great thing. We are in countdown phase now as this is the last week of current chemo treatment. As of next Tuesday, we will be giving N a full week of rest from medicine! At this point, I just want to speed time up. It's the looming reality that awaits us and it's like that same feeling you get in the pit of your stomach as the roller coaster slowly inches uphill, knowing that the imminent drop awaits. That's where I'm at right now. On that roller coaster chugging away in anticipation of the drop. I heard a talk many years ago that what humans can endure is largely dependent on one crucial component: hope. If someone experiencing torture knows that it is for a finite time, they draw an enormous amount of strength in the hope of knowing it's only f...