The Plain Jane Diaries

Clinic went as expected today. So many have commented to me recently that you really cannot tell he has any sort of ailment based on the way he looks or acts. This is true for most of the day now. Recently, we had to decrease his dosage on one of his meds. His immune system was getting too weak and so I went from giving him chemo pills at home twice a day, to once a day. Wow, what a difference that change made! He started to get his strength back and was feeling pretty normal aside from some lingering body aches. I will say that I have been amazed at how great he has been feeling recently. It is to the point that I asked the doctor today, "Are we certain we are doing enough?" He assured me that for now, our goal is for the scans scheduled for September 25 to come out clean to confirm remission. We are assuming at that point, however, that while there is no detectable disease left, that there are some undetectable lingering disease cells in his body that the high dosage chem...

As I mentioned in a previous post, ever since we found out that this transplant would be a part of his treatment plan, it has been a constant work in progress for me in grappling with what is to come. Through countless prayers, though, I thought that I had finally reached a place of acceptance, of peace and of gratitude for this opportunity of healing. While my gratitude has not wavered, I found out today that perhaps my peace with it isn't quite there yet. The doctor walked into our room at clinic today and to my surprise, he handed me a sheet of paper with the transplant schedule listed on it. Just like that. Boom. Right into my hands. As I stared at the date reading "October 18," my chest tightened, my heart dropped and I was immediately paralyzed with fear again. Panic set in because now that an official date has been set in motion, it just got real. The transplant nurse came in next and as she was explaining to me in detail what all needs to be done prior to this...

The resilience and strength that kids have never ceases to amaze me. N was first diagnosed when he was a tiny little 6 year old. Even though we spent every one of those 6 years encouraging N that he's a big boy now, the fact is that 6 year olds are... only 6! For N, I certainly believe that because he never fully realized the gravity of his condition at the time, he plowed through and carried forward without doubt and without question. It sucked, it was unfair, but he dealt with it. As his mom, I think I take this for granted at times not fully understanding how experiencing something like this can influence a child at such a young age. When N was a baby and I would take him out in public, strangers worked extremely hard to elicit a smile, a smirk, acknowledgement.. anything! He was pensive from birth, but never expressive. Stoic and cool as a cucumber always. After we finished treatment 1.5 years ago, one of the marked differences I noticed in N was his expressiveness. He was nota...

Every August when the new school year starts, I very quickly come to the conclusion that there just aren't enough hours in a single day. This year, that sentiment seems magnified because on any given day, my longest stretch of time to myself is about 1.5 hours before I have to jump back in the car. I'm certain every mother feels this way, though. Please tell me that at some point, I will wake up one morning and all the people in my tribe will magically do everything for themselves. Is it a unicorn dream? We had clinic today and N's neutrophil counts are back to normal! We had to take a 2 week pause on one of his medications because his immune system was getting compromised too much. You wouldn't have been able to tell that based on the way he looked though. He looked great and acted like any perfectly normal 8 year old boy this week, despite what the science of his body was telling us. This week, I noticed all the times he smiled with his eyes at me, I smirked at all ...

This past week marked the official end of summer vacation and the time of year us moms walk around saying to one another, "Happy new year!" 💁 I had some serious reservations about sending N into a fishbowl of germs aka school, but both the doctor and dear hubby strongly felt that it would be good for him to have some social interaction and a sense of normalcy before entering his period of complete isolation for the many months to come. I had a meeting with his school 2 days before the first day of school, and I was not only comforted but really encouraged and touched beyond expectations at the lengths to which they were willing to go in order to make it the safest place possible for him. Despite being a former teacher, I have a newfound appreciation for teachers now that I'm on the other side of it. I never realized the enormous impact one teacher can have on an entire family, and the depths of great influence a teacher has on my son's day. All 3 of my boys hang ...

Today is a day that we have been anxiously looking forward to for a long time. This morning, we met with the transplant doctor to discuss the plan for the stem cell transplant. Going in to it, we had already confirmed that youngest brother was a perfect match to be his bone marrow donor. The rest of us are not matches, and neither is anyone else in the donor bank. Youngest brother, who was our surprise gift, is now God's hand in saving our family. The exact timeline is not certain, but it looks like the transplant will likely take place at the beginning of November. 1 week prior to transplant day, N will undergo a high dosage chemo blast so we can eliminate any potential remaining cancer cells. This conditioning also enables N's body to essentially rid his own immune system so he can receive his younger brother's immune system as his own without attacking it as a foreign system. The period we are most concerned about is the 2 week period after transplant where he would fe...

One of the morsels of joy about experiencing suffering is that I get to see firsthand how much goodness there is in humanity. So many of you have reached out with such deep desires to help in some way, offering encouraging and uplifting words, verses, prayers... But as time goes on, I understand that it can seem burdensome to text me. That it can seem like a bother to ask the same questions of us. And so I decided to start this blog for several reasons. One, it would be an easy way to keep everyone updated, and two, it serves as a form of therapy for me. A win for you and a win for me! If you're here, then you already know that my sweet N has relapsed and that we confirmed over 4th of July week that his lymphoma is back. ALCL is extremely aggressive, so we were eager to start treatment immediately before it started to overtake his body. On July 12, just hours after wheeling him out of surgery for his catheter line placement in his chest, we started pumping chemo in. It was a long...