Is anyone even reading this anymore? =)

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 physical health. There have been many moments of "I don't feel very good." There have been countless arguments of "I don't want to" and "Why do I have to." So many mornings that I am pushing him out of bed while he cries "I just want to lay here!" You see, my friends, I focused so intently on our son's physical health, that I overlooked and took for granted that a child has mental and emotional needs because.. he's human. His complaints of "I don't feel very good" were confusing because he looked fine, but he didn't seem fine. After a trip to the hospital one day to address the "I don't feel good," I sat in the car listening to him sobbing in the back for no reason and realized that... he's just sad. It's cold outside, we are trapped at home, and he's got the blues. So we discussed it, recognized his sadness, and together we have been trying to be intentional about ways to cheer him up as a family. He's already better because he knows that this, too, shall pass.




Comments

Post a Comment

Popular posts from this blog

Day +16

It looks like his counts are now on the rise! We are waiting for his neutrophil count to reach 500 and steadily remain above that count before getting discharged. Once it stays above that count, the doctors said we can then look back at that first day he reached 500 and say that's the day his brother's cells fully grafted into his system. From that point on, I become a neurotic watchman over him until we reach day +100. After that, I am allowed to become a little ness neurotic for up to a year (because we all know how easy it is to become less neurotic about something). Based on how his numbers are patterning, the doctors have projected that we may be able to get out of these 4 white walls as early as MONDAY!! Freedom will never have tasted so sweet to my little boy. I am certain of that. Today is a special day for us because it is my middle buddy's birthday. We did celebrate as a family a full month early so that we could celebrate it together. Our middle child is funny ...
Read more

Day +6

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...
Read more

Mama's Hero

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...
Read more