SCT #2

First, apologies to those who follow us through this blog, we intend to update more frequently but get caught up in life.

We are inpatient at Johns Hopkins for Lincoln's second Stem Cell Transplant. We have been here for a week and today he received his own stem cells back. This transplant marks the end of chemotherapy for him so we held a small No More Chemo party. While he has a long road ahead of him still, we are thrilled to get past this stage.

Lincoln and his no more chemo cake

Today is considered Day 0 in the transplant world. For the next 100 days, we count up and by day 100 we can breath a little easier. We can't travel more than an hour away from his treating hospital and he's still considered very immune compromised until then.

So far, Lincoln is handling this transplant well, symptoms of mucositis have begun appearing sooner this time. The doctors say this is to be expected since he was on a harsher round of drugs and his system was already at a weakened state from his last transplant.

We are hoping to only be here for another two weeks but only time will tell. Transplants are so scary because it really feels like anything could happen any given day. So we are grateful for the good days, hold our breath on the bad days and push through each day we can.

Thank you to all those who think of us and our guy, whether it's through prayer, good vibes or thoughts, we are so grateful for it all. This is a tough road and it's made a bit easier knowing we've got an army behind us.

xoxo,

Megan

 

Happy Nurse Appreciation Week!

Like many things since Lincoln’s diagnosis, I never fully appreciated nurses until now. I’m sure I still can’t possibly appreciate all that they do; but I am much more aware of their sacrifice, dedication and passion. 

I can’t let this week go by without acknowledging their impact on Lincoln, myself and our family. The nurses in our life have seen both myself and my son on our worst behaviors and cared for us nonetheless. They have cried with me as we hold my precious boy down for yet another painful or difficult procedure. Nurses have humored me as I try to learn everything they’ve spent years training for in a few short weeks. They have taken the time to understand Lincoln (and me) and care for us in the way we require. 

Their patience with both of us and gentleness as they help me understand has allowed us to both be comfortable at a time and in a place where comfort can be impossible. While I wish I never knew this care, I am so grateful that we have it. 

 

xoxo,

Megan

A Quick Catch Up

So Lincoln has been out of the hospital now for a few weeks and seems to be happy to be back home again. He is still going back to the hospital a few times p/week for clinic, checkups, dressing changes, etc.

Lincoln is getting outside a little more, which is also been a relief. We have to keep in mind things like construction, lawn care being done, animals being walked, etc., but being able to be outside on the nice days have been really great. With that being said, we still need to be careful with visitors and sanitation and are taking every precaution to make sure that the environment he is in is as safe as it can be, seeing as how his immune system is still low.

Lincoln and Pete out on an adventure

Lincoln is scheduled to go back into Hopkins for his second Stem Cell Transplant on May 23rd (Day -7). Just like last time, we will be counting down (up?) to Day 0, when he will get the Transplant, then recover from there. I know last time we were there until Day +13, so I am hoping we can be there for that short again this time, especially because Lincoln has a big day coming up...

His 3rd birthday!!!

On June 19th, our little dude turns 3 and, while we have things in place if he is going to still in the hospital, and while we know that even if he isn't in the hospital, he may not being feeling too well or up to full "play" capacity, it would be nice to be able to celebrate with him in the comfort of his own home.

I'll keep this blog post short, but as always, thank you to everyone who has supported Lincoln through everything so far and thank you for all the prayers you have given. The road ahead is still long and full of some scary and challenging things, but our little dude is kicking butt!

Thanks all,
Michael