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

I needed today

Lincoln knocking off the nativity set from on top of the barn

Today was filled with good news.

It started simple, Lincoln was happy! He was cheerful, chatty and silly. Not only did he start the day this way, but he finished it this way!

His blood work from the early morning showed that he is getting healthier and a chat with the doctors echoed the same thing. His counts are rising and he'll be ready to go home soon.

Lincoln ate breakfast sitting on the blue couch in our room, then went fast in the police car all around the unit and downstairs. He showed Aunt Ellie all the cool spots and was out of his room for almost a whole hour! Later in the day Lincoln got back up for another walk and a ride in his the unit's police car with mommy and daddy.

Lincoln was particularly excited to show Aunt Ellie the mailbox he used to send his letter to Santa!

Lincoln's letter to Santa 

Right now, Lincoln's breathing is being supported by oxygen, he's got so much fluid and other nonsense around his lungs that it was taking so much of his energy just to breath. We're working on flexing those lungs by blowing bubbles, and he's a happy participant!

Lincoln working on his lungs by blowing bubbles

I can't overlook the enormous support we have received through friends and family. Right before I wrote this blog I saw the GoFundMe made for Lincoln's medical expenses had surpassed $6,000. This journey carries an incredible amount of emotional and physical burdens and unfortunately a very real financial burden. The financial support Lincoln has received so far allows us all to breath a bit better. 

Thank you all for your continued support, fingers crossed we'll be home on Tuesday!

-Megan

Sleep in heavenly peace

Sleep in heavenly peace sweet boy

I have hesitated to update the blog because it feels like there isn't much to report, but I know there are so many folks who are praying and thinking about our boy so I wanted to make sure I wrote something.

Lincoln completed his first round of chemo like a champ. He didn't have much nausea and in general didn't seem too affected. The doctors say they can tell the chemo is working by looking at his blood work (cells are dying which is indicative of the chemo working). 

We are working on getting up and moving. Physical therapy has been by a few times and we work with them on walking and building up some muscle strength. Bear-me (Jeremy) is Lincoln's personal physical therapist, we practice using our legs and arms to beat Bear-me up - all that training Bear-me put in wrestling is really paying off. 

Lincoln fighting off Bear-me's attempt to steal his cheese balls

Lincoln developed a pretty nasty rash but he seems to be on the mend now. We're not really sure why he got the rash, but I'm glad it's getting better, nothing seemed to help. 

Today he will have what is called an MIBG scan. He will need to be sedated as the scan takes approximately 2 hours and he has to be still the whole time. The current struggle is trying to help him understand why he can't eat or drink. The MIBG scan will show the doctors all the locations that the Neuroblastoma cells are hanging out. In the future these scans will be used to determine where to use radiation therapy, for now, it's more to establish a baseline.

We are still hanging out at Johns Hopkins Children's Hospital. Lincoln is dealing with fluid on the lungs still so until that's under control we won't be able to leave. We're hoping for some good news today, I think getting Lincoln home will help with his recovery. 

Some snuggles with daddy

I am humbled by the outpouring of support Lincoln has received.  He certainly has an army of support behind him. 

I don't think I'm getting any better at getting back to folks that have reached out, but please know that I appreciate everything. These past few weeks have been the worst weeks of my life but I have been comforted by all the kind words, thoughts and gestures. 

-Megan

Neuroblastoma

We received Lincoln's diagnosis today - high risk Neuroblastoma (high-risk because the cancer has spread to more than one location over the body).

Chemotherapy will start tonight and he'll received treatment for 5 days (once every 24 hours). It is still sounding like we will be here for another three weeks to monitor him and hopefully get the chest tube out.  If the entire treatment plan runs on "schedule" shall we say, it will take 18 months to 2.5 years. Lincoln isn't even 2.5 yet.

We have elected to participate in a clinical trial. Depending on what path Lincoln is assigned, he may receive additional treatment that is believed to help but not yet FDA approved.

I thought really hard about placing him in a study, I don't want him to be treated like an experiment and while to some folks he'll be a number or statistic, I am convinced that the doctors who are treating him at Hopkins, see him as my beautiful boy.

This morning, he was trying to run around the floor (my mother had to literally hold him back), pushing the fisher price toy car into the wall, Ellie, and my mom when they'd let him. My sister snapped the photo above, he squeezed me and said "I'm saving you mommy". It's incredible how something that was once our normal can just break you.

Thank you again for the support. I don't imagine we'll have an update in the near future, now it's just following the treatment plan. I'm sure Michael or myself will update when we feel like one is needed.

- Megan

The Sign

The sign is such a sweet gesture from our nurses but I hate it so much. You don't get a sign until they know you're going to stay a while. I really didn't want that sign.

There isn't much new to report, but I can't sleep so I thought I'd blog a bit about our journey so far. It hasn't even been a week and it feels like a lifetime ago when I was innocently driving to Lincoln's pediatrician's office. I wanted to get in before work, hoping to minimize the time I'd need to use and taking advantage of the open office hours from 8 am to 9 am. I was excited about heading to New Orleans for the next few days and hosting a mega Thanksgiving (we were having over 30 people over), I just wanted to be sure my boy was good before I left.

Now, just 5 days later I am wide awake at 3 am thinking about what Lincoln's next few weeks will look like. It has been determined that we will not be leaving until he starts treatment. Hopefully we'll know by Wednesday what type of cancer he has. I've been promised that as soon as we get the report back, I'll be the first to know and we'll start treatment immediately.

Until then, we are working on getting Lincoln up and out of bed, trying to figure out how to create structure and expectations when everything is so new and different, and doing our best to hold it all together.

Again, thank you to all those who have reached out to myself or Michael, we appreciate every kind thought and we have been overwhelmed by how many people are fighting for our boy.

- Megan

The Journey Begins

Our sweet Lincoln was diagnosed with cancer this week.

After a few days of Lincoln acting lethargic, we took him to the doctors for what we thought might be an ear infection (he wasn't complaining of anything hurting, and often doesn't with ear infections). Once in the office, the P.A. ruled out an ear infection and strep but noticed his belly was distended so ordered an ultrasound.

Between the ultrasound and x-ray that was also done, it was determined that Lincoln had a mass on his kidney.

We headed to Johns Hopkins Childrens Hospital.

After a CT scan, bloodwork, and biopsies we are left with the diagnosis of Cancer. He has a tumor between the size of a grapefruit and a cantaloup in his belly, on his left side, heading up his back. We do not yet know what type of cancer he has and won't be able to begin treatment until it is determined.

Our boy has been through quite a bit the last few days, today he has smiled a few times and started playing. We have a long uncertain road ahead of us, but he is feeling better today than he was yesterday.

The love and support that we have received has been tremendous. I am limiting the number of people I personally speak to about everything purely because I don't have the time or energy to share everything to everyone who knows and loves Lincoln and myself. I am reading comments and texts, thank you for them and feel free to keep them coming, even if I don't reply.

Michael and I will be updating this site throughout our journey. 

-Megan