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| Easter morning, 2014 |
"As we approach the first anniversary of Nathan's brain tumor and hydrocephalus diagnosis, we have decided to celebrate him and his strength to overcome many obstacles by conducting a toy and book collection for kids that are not as lucky as he has been. They will be donated to the specific floor that he was treated on at Boston Children's. His doctors and nurses were incredible in every way and got us through one of the most difficult times in our lives. We've also met some incredible families and kids on this journey we are on. If you are interested in making a donation of any kind: toys, books, art supplies, gift cards, etc. (ages birth - 18), please let me know and I show you how you can help! You can private message me for my address or the address of the collection spot in Plainville. We will be bringing them to Boston on May 14. Thank you for honoring the perseverance of Nate the Great!"
We had no idea the response that we would generate from this one post. We received our first donation on April 5 and continued to receive donations of all kinds up until the day we left for Nate's next scan on May 14. It was an incredible 6 weeks. I'll touch more on that later.
In early 2014, I had added the app, Timehop, to my iPhone. This app is fun to use as it gives you a glimpse into the past allowing you to see your posts and pictures from previous years using your all of your social media outlets. This app can be great as it serves as a reminder of all the good things that have happened, but it can also be a source of sadness when it gently reminds you of what has happened. On April 6, 2014, I was given a Timehop reminder of the crazy headaches I had while I was pregnant with Nathan in 2011. I suffered through 16 long weeks of debilitating headaches all while attempting to care for Benjamin, who was not even 18 months old at the time. I sat and looked at the "gentle" reminder and began to question myself. Were these headaches a sign of things to come? Are they somehow related to what is going on with Nate? It was a time of crazy reflection, but also a realization that we may never know the cause of the tumor. But, does that matter? Will a reason change the way we live our lives? The answer is no. Nathan was given this tumor for a reason and he is here for a reason. We, as a family, will do our part to help change the world one person at a time.
The second week of April brought several emotional struggles. We were coming up on the first anniversary of Nate's diagnosis. We often re-play that day in our minds, but actually experiencing the day would be a whole new experience. But first, on the 10th, as we were delivering flyers in our neighborhood for our donation drive, an unleashed dog ran from its garage straight at the boys, Lincoln (our 100 pound boxer), and I. Lincoln did his best to fend him off before the owner grabbed him. Then, in the next second, the owner let him go for some reason and the dog crashed through me and knocked over the stroller, allowing Nate to go head first into the ground. Seriously?? I was absolutely beside myself. I gave the neighbor a few choice words and may have used the brain tumor card to make him feel like a piece of shit. (mind my language) Sometimes, people just don't think. Thankfully, Nate wasn't injured.
If that wasn't enough, on the 11th, I somehow lost my wallet at Target. If you have ever done this, you know the feeling you get in the pit of your stomach. I realize it's a small thing compared to everything else that has gone on in the past year, but I was still hysterical at the thought of losing it. I drove back to the store and learned that someone had turned it in! I had dropped it in the parking lot and someone actually turned it in without even glancing through it. Everything was there; from my license to Nate's Dana-Farber information card, all the cash and the credit cards. Unbelievable. The front end manager must've thought I was crazy when I gave her a hug. She certainly didn't realize the overwhelming emotion I was feeling that week.
April 12th arrived; Stephen was in Florida playing golf with a group of friends and I was home with the boys. We shared a nice conversation at the beginning of the day to remind ourselves of our lucky we are to be where we are and that Nathan's an incredible little boy that has made so many gains over the past year with the help of so many people. For those of you that aren't on Facebook, this was my post from April 12, 2014:
"It was a year ago today that Nathan was diagnosed with an inoperable brain tumor and hydrocephalus. I don't have the words to describe that dreadful day. But, he's made it through the first year and is incredibly blessed to have made the strides that he has. We are beyond lucky to be his parents and we soak in every little thing that makes up Nate the Great.
Nate’s year in numbers:
- 5 MRI’s 1 MRI w/contrast
- 1 emergency surgery to place external shunt
- 1 ICU ambulance ride from Springfield to Boston
- 1 Boston Marathon bombing
- 1 surgery to complete endoscopic third ventriculostomy (w/an unsuccessful attempt at a tumor biopsy)
- 1 inter-operative MRI
- 1 Early Intervention evaluation
- 1 dentist appointment
- 2 pediatric ophthalmology appointments
- 1 ER visit (croup)
- 1 pediatric otolaryngology appointment
- 1 surgery to remove adenoids and put in tubes
- 2 hospitals
- 1 adult neurosurgeon
- 1 pediatric neurosurgeon
- 2 pediatric neuro-oncologists
- 1 sleep consultant
- 1 psychologist
- 1 social worker
- 1 development therapist
- 14 rounds of antibiotics (pink eye, ingrown toenails, endless ear infections, croup)
~1 husband and 1 wife
~2 precious little boys
~3 grandparents (and 1 Pepere helping from Heaven)
~countless family and friends
~5 other adults in Nate’s life that probably don’t even realize how much they’ve helped him, (or me!) (1 playgroup leader, 1 swim instructor, 1 gym class instructor, 1 music class teacher, 1 daycare provider)
~1 playgroup with the most supportive group of Moms and kids
~several blogs written by brain tumor families
~3 Facebook groups made up of parents with children with brain tumors
~countless other families dealing with children that have any illness
This past year has taught me an infinite amount of lessons. I hope that my posts about Nate weren’t bothersome, but gave some perspective and motivated you to learn, to grow, to inspire others and be inspired. I know that I’ve done each of those things this past year and I’m not sure I would’ve if it weren’t for Nate. I know that out of all the brain tumor diagnoses, his is one of the best that doesn’t always require typical tumor treatment. However, he is also in that percentage that won’t be considered cured or in remission. His best case is “stable.” This means constant monitoring and knowing that even in the best case, he will never be tumor-free. Outside of a miracle, we will never be able to get that “clean scan” celebration. Most tumors get a diagnosis, treatment, post-treatment, and remission. Nate gets a diagnosis, watch and wait (treatment is never off the table), and hopefully, stable. We are always holding our breath."
It was a good way to allow me to reflect on our journey, the difficult moments, the good moments, and the realization that we don't have it so bad. We are surrounded by some pretty amazing people. Thankfully, the day wasn't as bad as I thought it would be.
Here are some videos for you to smile about...
On the 22nd, Nate and I traveled to Waltham to have his surgery follow-up and hearing test. Thankfully, all went well and his hearing returned to normal range. We were definitely excited to hear this!
Back to the "anything kid" donation drive. This proved to be one of the best experiences in my entire life. To see all the love and generosity pour in from everywhere made our hearts smile and it helped ease our scanxiety for the upcoming scan on May 14. On May 5th, before the actual "final" count of our donation, we had counted 8 boxes with 63 coloring books, 90 assorted art supplies, 25 board games, 4 Lego sets, 18 puzzles, and 14 baby items. This doesn't include monetary donations and gift cards. I hope you enjoy the pictures that were taken throughout the month of all of the donations!
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