N.E.D.

No three letters have ever held more significance for us than N.E.D. (No Evidence of Disease). We are thrilled to report that on Friday we received the results from his scan and for the first time, Lincoln was officially declared N.E.D.

A photo of Lincoln holding a rock he painted, it says brave.

Lincoln will start his final frontline treatment course this month, Immunotherapy. He will receive six four week cycles of Immunotherapy. The first five cycles consist of 14 days of GM-CSF shots, after the first three or four days, Lincoln will go inpatient to receive ch.14.18 (this is the actual immunotherapy drug and is incredibly painful) he'll be in patient for 5 days. Then he'll do 14 days of accutane (yes, the same stuff they give teenagers for acne). Accutane causes cells to age so the theory is that it will cause any potential neuroblastoma cells to age into ganglioneuroblastomas. The final and sixth cycle will consists of just accutane every day.

So if things go according to plan, Lincoln will be done his official treatment in February 2020. We are still working out what we might do after his initial treatment - options include the DFMO trial or the vaccine trail. Lincoln's doctor at Hopkins wouldn't recommend either treatment but he was clearly skeptical of DFMO and intrigued by vaccine.  So I don't know where that will lead us, we'll keep asking questions until we're comfortable making a decision.

Thank you for following along even with delayed updates. It's a tough journey and I'm grateful to have so many folks checking in on us.

xoxo,

Megan

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

Stem Cell Transplant Day -7

Today has been one of the toughest days so far in this journey. I'm scared for what is going to happen to my guy and worried about the way the next few weeks are going to go. Lincoln so far has been in pretty good spirits, he thinks it's pretty neat grandma is staying the night with us. For the first three days, Lincoln will be receiving a chemo that requires him to bathe every six hours. Grandma is staying to help with the extra stress and be a great distraction for Lincoln.

Lincoln and Grandma first day of transplant

At 10 pm he had his first bath, it started out ok but it ended with a dressing change and it went down hill. We'll all wake up at 4 am and do it again. I can't wait until Friday at 4 pm! Another unfortunate side effect of the chemo is that Lincoln can't leave his room, we don't want anyone outside of his room to be exposed to the medication coming off his body. Anyone who touches him needs to wear gloves which is particularly difficult for this mama to do but I'm trying.

All and all we got through today, Lincoln overall was happy and we're pushing through. Thanks for all the support so far, we appreciate it all and certainly need it right now.

xoxo,

Megan

Results are in!

Mom and I just got done meeting with Dr. Chen and the results are fantastic! The MIBG results are "nearly normal" when pressed as to what Lincoln's curie score would be we were told that Dr. Chen would score it a 0. There are small areas that may be lighting up but with the way the scans read it's very difficult to tell. When Lincoln was diagnosed his score was a 7. We also got the results of the the bone marrow, no cancer there either! Yahoo!

According to Dr. Chen Lincoln's organs look great, they're in "tip top shape" (yes, I wrote that down in my notes). Lincoln does have high blood pressure due to all the stress his poor body is under. This can be attributed to the cancer as well as the treatment. The expectation is that when his body is under less stress we'll be able to see his blood pressure decrease as well.

So, with these great results, we have been cleared to start the first stem cell transplant. Lincoln will go inpatient on Tuesday, April 2nd. He will receive 6 days of high dose chemotherapy, have a rest day, then receive his stem cells.  He'll get the drug Thiotepa days -7 through -5 and Cyclophosamide days -5 through -2 (Stem cell transplants count down until day 0 when Lincoln will get his stem cells then the days count back up). We anticipate being inpatient for three to four weeks.

We have one more weekend until inpatient and we'll be sure to make it count, lots of playing, eating yummy foods and enjoying each other's company. 

Thanks for all the support coming our way, the encouragement and love helps so much.

xoxo,

Megan

Cycle 5

Cycle 5 went out with a bang. Lincoln had been doing great up until about an hour before discharge when he started vomiting. He's really handling it all quite well, he'll typically get sick then keep playing but it's not fun.

While he was inpatient this time both mom-mom (Michael's mother) and grandma (Megan's mother) came up to hang out with him.

Lincoln playing in the play room with Grandma

Lincoln making a pillowcase with Mom-mom

Every time I get overwhelmed by all that is before us I think about the support system Lincoln has and am reminded that there are so many people that love him and are doing all that they can to support him.

Next up are tons of tests to prepare for his first of two stem cell transplants. As long as his disease progression comes back with good news and his body is ready for the transplant he should start on or around April 2nd.

We will be in and out of clinic at least once each week but several weeks we have multiple appointments. MIBG will be on March 21st. This is the scan I am most anxious about as it really determines how much disease is still in his body.

Thanks for sending the prayers, juju, vibes, thoughts our way, we love all of them.

xoxo,
Megan