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

Pathology Report

I got a call from Dr. Bagatell today. The pathology on Lincoln's tumor came back and the report said it was all dead or scar tissue! The chemo is doing its job and killing all the cancer buggies in Lincoln. We knew the tumor was reacting by the massive reduction in size but getting the pathology back that it's dead was so exciting!

Lincoln still has a long road ahead of him which is preventing me from really breathing a sigh of relief but this is great news and I am so thankful.

As of now it looks like Lincoln will be moving forward with his final cycle of chemo on Monday (he still has tandem stem cell transplants, radiation and immunotherapy). Until then we are enjoying time together at home.

xoxo,
Megan

He is so strong

We've been told over and over again how strong our boy is, and man does he prove it!

Lincoln did incredible today. He stayed strong through the more than 7 hour surgery AND he kept his kidney! I couldn't be more grateful for Dr. Mattei and the team at Childrens Hospital of Philadelphia.

Lincoln waiting to go to surgery

All three surgeons we consulted with as well as his oncologist at Hopkins and CHOP agreed Lincoln's kidney would have to go based off the scans. But, once Dr. Mattei began pulling the tumor off his kidney, it looked great! He saved the kidney and resected over 90% of the tumor. Before the evening was over he was smiling and drinking juice.

We are so thrilled!!! Thank you to everyone who kept us in your thoughts.

xoxo,
Megan

A Little Encouragement

I know I don't write on this blog as much as Megan does, but I wanted to be sure to put out my thoughts on everything up to this point and to be able to fill people in on some of the things that have been happening.

Lincoln and Megan went to CHOP last week and, as many of you read, ended up staying the night unexpectedly. He came home the next day and is doing great.

The stay that Megan and Lincoln had at CHOP, however, made us question even deeper as to what we wanted to do for the resection surgery. Megan mentioned how impressed she was with the facility and the care that was given and, as a conversation developed around the ideas of which medical philosophy we were going to follow for Lincolns plan, we have decided away from going to New York City for the surgery. We are still between CHOP and Hopkins now for the surgery, and conversations are still happening between us and the hospitals, though we have a good idea as to what it is we want out of it all.

Speaking of change, and the main reason I wanted to write tonight was to share the comparison of the charts in Lincolns abdomen! While I know that the road ahead is still incredibly long and difficult, the little things that feel like victories (such as this) help push you through day to day. I'm in shock at how my boy could play and still be active and such with this thing inside him, and seeing how much it has all changed since November, I'm blown away at the effectiveness of the chemotherapy and find myself slightly more and more hopeful.

November // February

Besides that good news, things are still relatively the same. The fears that come with the future of his treatment still exist. Waiting for the surgery and waiting for the transplant are still incredibly difficult and raise a million questions. It's all still a battle and Lincoln is still fighting as strong as ever.

-Michael

Consult with CHOP and an overnight stay

We were super excited to meet with Dr. Bagatell at CHOP, she has done a bunch of research in the field of Neuroblastoma and I was really looking forward to hearing what she had to say about Lincoln so far.

Lincoln meeting Dr. Bagatell

The meeting went great, it left me with more questions, but a lot of answers. While we were there Lincoln bumped his head playing, nothing serious, but we wanted to get his counts checked just to be sure. It turns out his platelets and hemoglobin were both low.

So we headed over to the day hospital and received platelets and a blood transfusion but unfortunately, Lincoln spiked a fever.

Lincoln watching Barney

So now we're being admitted to CHOP.  We're super glad that Lincoln was given the treatment he needed, but bummed that we're not home tonight. Fingers crossed we'll be heading home tomorrow but for now, we're in good hands at CHOP.

xoxo,

Megan

Cycle 4

Lincoln completed cycle 4 this past week. This cycle was delayed by 5 days because his ANC count (how well his body is recovering) was too low. Overall he did really well, we were in and out in three days.

Playing with kinetic sand and dinosaurs

On Friday he had a CT scan. The initial reports are that his tumor has reduced in size significantly which of course we were happy to hear. He needs to get an additional scan because there is some concern regarding his lungs. I'm hoping to get those scans ASAP and that we get good news from them.

His surgery is scheduled for February 25th. The plan is to go to Dr. LaQuaglia at Sloan (in NYC). We will drive up on February 18th for a clinic appointment on February 19th, then make the trip back up for a long stay on February 24th. We will be staying at the Ronald McDonald House by the hospital. 

I can't end this post without mentioning Colin. On the day we were leaving the hospital, I was learning of Colin's passing. As I was taking my baby home, another dear family was leaving without theirs. I grew up with Colin's aunt and had the pleasure of meeting his mother one of the first nights we were in the hospital, she shared with me how to find support and has given me advice regarding Lincoln's treatment. Lincoln spent hours playing with Colin's older sisters in the play room. This world lost a beautiful boy who fought his whole life. I am so grateful Colin shared his sisters with Lincoln and heartbroken that they will never get to play with Colin again. 

Thanks to all those who are thinking, praying and loving on us.

xoxo,

Megan

Lincoln's Roadmap

I realized, in our efforts to share with everyone how Lincoln is doing, we failed to share with you what the next 18 months will (hopefully) look like for Lincoln. Neuroblastoma is an extremely aggressive form of cancer and also relatively rare (about 800 kids are diagnosed each year in the US). Current protocols have a 60% "success" rate. I put success in quotes because the treatment is so toxic most kids have long term effects from treatment. Also, success is defined as going on to live a long life - exactly what we want for our guy.

We are following the COG protocol - a majority of hospitals follow this protocol but Sloan and a few others have their own methods.

Lincoln will receive five rounds of chemotherapy with different mixes of chemotherapy drugs - after his fourth cycle, he will have surgery (we go in for his fourth cycle on Wednesday). We are hoping to take him to Sloan for his surgery and have Dr. LaQuaglia remove his tumor. After surgery he'll have his final round of chemotherapy at Hopkins.

Next is the dreaded stem cell transplants (SCT). If everything goes "right" he'll have two SCTs. It's hard to accept that this is what we want to happen because it is so hard on their bodies. They get a dosage of chemotherapy so strong it kills all of their bone marrow and they need a rescue of stem cells.  They will use Lincoln's own stem cells that they harvested from him before cycle three. There is a photo below of the harvest - I think it's important that the scarier sides of Lincoln's story are shown too. This is childhood caner, and it is the absolute worst.

Lincoln during the stem cell harvest.

So far, these are the only things the doctors have actually spoken to me about in any detail. However, I was given a piece of paper with the rest of the treatment plan and through research and conversations with other moms I have an idea what the rest of his treatment will look like.

This is literally the only info I've been given for after the SCT

After he recovers from his tandem SCT, he will go through radiation - I don't know how many weeks or how frequently. Then Lincoln will go through immunotherapy. In immunotherapy he'll be given a drug that attacks neuroblastoma cells but ALSO attacks cells that appear similar to neuroblastoma cells so that's a lot of his nerve receptors. My understanding is this phase is incredibly painful and kids are often kept on morphine drips to help with the pain.

Then, after all that is over (which should take about 16 more months given he doesn't have any setbacks) we will enter into either the DFMO trial or the vaccine trial at Sloan. These are two different trials that are working to prevent Neuroblastoma from coming back because currently 50% of all kids who make it through protocol and are declared No Evidence of Disease (NED) end up relapsing.

So there you have it, the awful, ugly road Lincoln has ahead of him. I am so angry my guy has to go through this, how crappy that the best thing we've got for him is going to destroy so much of the healthy in him while eliminating the bad. However, I am also grateful that there is hope. That the trend is going upwards, that Lincoln will be seen by the BEST doctors in the field (he's got an appointment a CHOP as well just to make sure the doctors at Hopkins are looking at everything), and he is so stinking strong.

Uncle Erik and Lincoln

Thanks to everyone who has supported us so far in this journey, it's a really tough road and some days are easier than others. We've got a long road ahead of us and everyone who has lifted us up makes it a bit more bearable.

xoxo,

Megan

Round 3

Lincoln completed his most recent round of Chemotherapy on Saturday. This is round three for him - it consisted of Cisplatin and Etoposide. He did really well in the hospital, was in really good spirits and the nausea didn't come until Saturday evening.

Lincoln laughing with pop-pop and Ellie

Lincoln is fighting like a champ, maintaining good spirts but some things are getting more difficult for him. He is scared of being hurt. He is always making sure he isn't going to have a sticker change (they happen once a week) and oral medications are becoming increasingly more difficult to give him (for fear of them tasting yucky and him getting sick). He is on daily fluids that he gets overnight due to his nausea and the side effects of the chemo. I am so grateful for the technology to allow us to administer these medications at home, we all feel better when we're home.

Lincoln playing with grandma.

All and all I am grateful this round wasn't too harsh, each round is new for us, and each round has new concerns, fears and side effects.

Sunday morning selfies as we wait for discharge.

Round 4 will be in approximately 15 days, but we'll be back in the hospital at least weekly for clinic appointments.

We have reached out to Dr. LaQuaglia at Sloan in hopes he'll be able to perform Lincoln's tumor resection. If not, we are still comfortable with Dr. Rhee at Hopkins, but we're hoping everything works out for NYC.

This visit we brought Lincoln's dinosaur head along with us and he LOVED scaring the nurses. I like having an activity for him to do outside of the room so I try to bring something fun that can be used in the hallways of 11S.  I didn't catch any video of him scaring the nurses, but here's one of him the room that Jeremy got, enjoy =)

xoxo,
Megan