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