Prayer Requests

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 that?) There are some preventative methods like mouth washes and sucking on popsicles when the chemo goes in to constrict the blood vessels in his mouth, so there is hope that the sores won't be so bad for N. Since the beginning I have boldly prayed for no mouth sores. Is it possible not to have the sores? Yes, the doctor says. Is it likely? Probably not.

The other possible side effects include about a week of severe diarrhea, nausea as is typical of any chemo, and of course infections since we are completely depleting his immune system of any defense to his environment. As his blood counts begin to drop and bottom out to zero about 7-10 days after the high dose chemo conditioning, I think that's when he would feel his weakest. It's like having flu like body aches, but with the voltage amped up.

Secondly, and just as important, is of course for W's procedure in the OR to go smoothly without complications, and for him to bounce back and recover as swiftly and with as little discomfort as possible! And for our middle one who rarely gives us reason to worry, that he would have understanding and security in that he is loved and valued.

So I share these things with you today that I have privately been praying for every single day since I found out about the transplant, so that you too can please join me in praying specifically for these concerns that face us ahead, all the while keeping our eyes up on the hope that the price for enduring these things is ultimately a long lifetime of good health filled with many days of endless reasons to smile!

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