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

Home Again, Home Again

Just trying to keep folks up to date. Lincoln had his second round of chemo, as you read in the previous entry. We are finally back home again at Megans house in Severna Park. His ANC count is going to go down to zero this week and I am terrified of it. We have all made sure to take precautions and I have even sent unnecessary texts to family reminding them that myself and the house have to be a germ-free zone. I guess you can never be TOO careful, right?

Lincoln and I before coming home again

The stay at the hospital went well. I still absolutely hate having to leave for work, but know it is what I need to do. I do feel like I got to participate in some more of the stuff that goes on up at 11S this time though - we made slime in the Great Room, I got to take Lincoln on more car rides, and we got some food from a local burger joint. I know the days he is there while I'm working aren't always so packed with activity and I know there is a lot of time just spent in the room itself, but I really do wish I could be there, even just to sit around.

Making candy canes

Craft time with MomMom

I'm finding that I am growing more sensitive to things. I assume that it may just be the holidays or something of the sort (I never thought it would be this difficult, but not being able to do all the normal Christmas stuff or even just a few of the things I had planned to do with Lincoln this season has gotten to me). I see pictures from last year and it breaks me down. I see my friends doing holiday events and I can't wait until we can do it all again. I don't know - it's just a very strange situation.

Either way, I'm incredibly happy that Little Man gets to spend more time at home in his boat-bed, with all of his toys, his family, and the comforts of the house. We have a few more visits to the hospital coming up before the season is over, so I am sure there will be more updates in the near future.

-Michael

Chemo, Round 2

Playing with blocks in our room

We started our second round of chemotherapy yesterday and he's doing great so far. Everyone on the floor has been really happy to see Lincoln so active, cheerful, silly and fun - a big contrast from our last stay at Hopkins.

This second round started with some really tough decisions. When Lincoln was diagnosed, we decided to place him on a trial - this was also the only option really presented to us. After I received the consent form for the second stage and read up on MIBG therapy, I was extremely uncomfortable proceeding with the study. I sought other opinions (my mother and I went to Memorial Sloan Kettering in NYC on Monday), did as much research as I could do, and still was really uncomfortable with the treatment. We have decided to take Lincoln off of the study.

While I was at Sloan I was filled with hope for Lincoln and what they are offering their patients. The hospital specializes in treating people with cancer and they have a team of doctors dedicated to treating neuroblastoma! I'm not sure what we'll decide for Lincoln but, I think it was in our best interest to understand some of the options to what Hopkins is offering.

For now, Lincoln will continue to receive care at Hopkins, the frontline chemotherapy is similar to what Sloan offers their patients. I wish there was an easier way for me to access unbiased information regarding treatment plans for children with neuroblastoma - any researchers out there find something reputable comparing Sloan to Hopkins (or COG) I'd love to see it =).

Thanks for all of you who are along on our journey, we are doing well, enjoying every single moment together and appreciating all that we have.

love,

megan

Hair

So one of the things I knew would eventually come would be the loss of Lincolns hair. There has always been a back and forth about his hair before this between his mother and I (we never could seem to agree on a hair cut for Little Man), but it's pretty sad now knowing that we don't have that option.

Fortunately, Lincoln seems to be taking it in good stride. He mentions the hair he finds on his clothes and on his pillow, but it has yet to seem to really bother him. We have done a good bit to make it not as dreary of a situation - reminding him that he is going to have hair like Daddy, telling him that he wont have to get his hair washed again for a while (he hates that part of bath time), and even let him shave Jeremys head (which started with Daddy helping, but Jeremy was brave enough to let Lincoln go at it solo towards the end).

Lincoln shaving Jeremy's head

All in all, for me, this was one of the parts that I feared the most. I was terrified of watching him lose his hair and destroyed at the idea of my little blonde boy not having his locks anymore, but I will admit, it wasn't as bad as expected. It isn't all off of his head yet, though soon will be, but at least he will match both Jeremy and Daddy, which I think is something he can carry with pride. If it isn't, then I know both Jeremy and I can at least carry with pride the fact that we have a haircut like him. He's the toughest dude around.

-Michael

A Month Later

It's wild to think that it has been three weeks since this whole ordeal began. It is something that I never would have imagined and one of those things you think could never happen to you. But it does and it did. Megan and I are living out the worst fear of every parent. It's real.

I haven't written anything out on the blog yet up until this point, so I figured it would be good to share what was going on in my head during our journey thus far. Megan and I have each had different battles to fight along the way with this - it takes a village and we are all doing our parts.

After getting the news that Lincoln was sick and learning that we would be at the hospital for a while, Meg and I both decided we would stay, the three of us, every night. We each only ever took one night during that time to not be at the hospital and, though it was a tight squeeze for the three of us, I am so glad that we both could be there for our son.

The hardest part of it all wasn't the nights, however. Not for me at least. The most difficult part was the days. Megan and I both work and, while Megan was fortunate enough to have time and FMLA on her belt with her work, I just started my new job back in September and wasn't even close to being so fortunate on that end. I had to get back to work - not only for the money aspect, but for the sake that I hold the insurance for Lincoln, and he needs it now more than ever - I couldn't risk losing it.

Going back to work was the hardest thing I have had to do. Walking away form my son that first time was painful. It broke me. I hated not being there and texted Megan every chance I could for updates. But I also realized just how amazing my company and prior company could be through all of this. My work (TekSystems) reassured me that with everything going on, that I need to put family first and that I could do what I needed to for my son. They forgave my time off. They let me know that my job was secure and that it was going to be ok. I needed to hear that in order to lift that burden. On top of that, my old employer (Johns Hopkins University CTL) visited Lincoln multiple times (as they are only a few blocks away from the hospital) bringing him toys, different styles of support for Meg and I, and making sure we knew they were always there for us. I can't explain how grateful I am for the companies I have worked for and work for currently, who have been more kind than they ever needed to be to an employee. It made such a difference.

Lincoln and I leaving 11S for the first time in 3 weeks

With all of this being said, I also want to make sure to thank everyone who supported us in one way or another. Whether it be through prayers, well wishes, texts, calls, donations, or even wearing a ribbon or bracelet for people to see - I can't tell you all how blessed the three of us really are to have you all here. Thank you, thank you, thank you.

In Too Deep wearing yellow ribbons to support Lincoln at their SoundStage show last weekend

You all know the medical aspects of our journey, so I won't go into all that in this post. Megan did a fantastic job at sharing everything we are comfortable with sharing.

The last thing to touch on, I suppose, is where we are now. Lincoln is home! It felt like it would never actually happen, but it did and I couldn't be more happy about it. Knowing my boy is going to be healing in his own bed, with his own toys, in his own room...it's such a relief. We have decided that Lincoln is going to spend this time at home at his mothers house in Severna Park as opposed to mine in Pasadena. This decision is based on the fact that the geographic location is much better (closer to her parents who are only up the street, as well as only 5 mins from Megans work so she could get there at the drop of a hat), that there is more than just one person living there (extra hands in the situation are nice to have, so having a house with more people who are deep into the situation is a blessing), and that we are able to maintain a level of seriously deep cleanliness for Lincoln while he undergoes further treatments and his immune system is compromised. Fortunately, Megan and I have worked out space for me to stay there at that home while Lincoln undergoes treatment and is staying solely at that house (until the time comes where he can easily go to both again).

We have a long journey ahead of us, but I am confident that with the love from his parents, the care from his family, and the continued support of his friends and community, our boy will champion this disease and make it through. He's our little Superman.

-Michael

Lincoln, Megan, and I busting out of Hopkins, finally!

We're Home!

Lincoln riding around in his car, eating a cookie and sporting his new Blippi hat

We did it! We made it home!

We are beyond excited to be home for a few days before Lincoln's next treatment.

It's incredible what being in your own space can do. Lincoln has been struggling with breathing, and the doctors believed the best medicine for him was getting him home where he could play with his toys, be comfortable and move freely. In just two hours he was walking independently all over the house, playing with his toys and breathing well (not normal, but he did well).

With the holidays coming up and his next chemotherapy cycle scheduled for December 12th (it will last five days and he'll be inpatient at Hopkins, hopefully we'll be out after the five days) I was really stressing about Christmas. That the holiday would come and go and we wouldn't get to celebrate it at all. I was overjoyed when Lincoln and I came home and the house had been decorated for Christmas!

Group Photo

Some dear friends of mine surprised us by decorating the house. Poor Bear-me had to deal with my frantic ranting about how important it was that we decorate and that I was going out to get a tree first thing. The whole time he knew it was all under control and gently reassured me it would all get done.

I hope that we don't have anything to report until the 12th when we start our second round of Chemotherapy. Send all the prayers, good thoughts and juju our way so we don't end up at the hospital before then =)

Sending all my love and gratitude to you,

Megan