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