Good evening!
Winter is finally over and spring has arrived!! This is one of my favorite times of the year. There is nothing better than seeing the grass turn green and the flowers start to bloom. It is a sign of new beginnings. Nathan was hit with quite a few viruses and two rounds of pneumonia over the winter. It is so nice to see him playing outside and running around with his trucks. I could watch him run around the back yard chasing a ball and pushing his trucks all day. He absolutely loves being outside.
This has been an exhausting week in the Leckey house, but by far the greatest week we have had since Nathan was diagnosed three years ago. He had an MRI on Monday and the tumor has remained stable since his last MRI in February! He finished his one year cycle of Avastin and received his last dose of chemotherapy on Monday. It has taken me four days to actually believe what I am saying…Nathan finally gets a break from chemotherapy. In my update several months ago I wrote in capital letters what I had in my head for so long…THE TUMOR IS SHRINKING. This update was another one that I have written in my head over and over and have never been able to write. Now that it is true, I think I will say it just one more time…NATHAN IS CHEMO FREE! He was walking around all day today saying thumbs up to being chemo free mom! Needless to say, I cried every time.
He has received 66 rounds of chemotherapy and been under general anesthesia 23 times since he was diagnosed on June 2, 2012. When I woke up this morning I had to say it out loud to actually believe myself. Our little fighter has been going nonstop, never complaining, and now he finally gets what he deserves….a break! Just like all of the beautiful flowers that are about to bloom, Nathan can finally grow and develop without battling the toxic chemotherapies his little body has had to endure for three years. We took lots of pictures of his last treatment and he must have gone through them ten times today. He kept showing me the picture of the MRI I had on my phone and said, “Hey mom, that’s the inside of my brain. Did you know it is all better now?” Kids pick up on everything!
We traveled to Boston on Tuesday and met with his team of doctors yesterday. They gave us great reports and think Nathan is doing very well. They believe his symptoms are stable and feel confident stoping therapy is the right decision. He will receive his next MRI in three months. Avastin is a complicated drug because it can change the image of the MRI. It is often not clear exactly what the tumor is doing until you stop therapy and let the brain go back to its baseline. His oncologist believes it will take about six months for the scan to give us true information. It is critical that we monitor Nathan’s symptoms very closely as that will be a better sign of what the tumor is doing. Once again, we were reminded that we have some of the greatest minds in the world working on Nathan’s case. His oncologist in Boston is on the cutting edge of every medical development pertaining to pediatric brain tumors. His lab has over 60 scientists working just on low grade glioma tumors which is Nathan’s tumor. We fully trust them to manage this delicate time in Nathan’s care. During these three months off therapy Nathan will continue to receive weekly physical therapy, occupational therapy, and speech therapy. Now is the time to push him because his body will be strong and accept the treatments. He works hard for the therapists. His work ethic is incredible for little guy…then the therapists leave and he gives mommy and daddy a run for our money just like a three year old should.
The past few days have been filled with smiles and hugs. When I opened my eyes this morning I just looked up and said, “Thank you!” God is hearing each and every one of us and is answering our prayers. You have helped our family through the darkest moments in our lives. I remember in one of my first emails I used the phrase, it takes a village to raise a child. You have been Nathan’s village who have faithfully stood by our side in prayer every step of the way. God is hearing you all. We know he will protect our Nathan and give his body the strength it needs to continue fighting. He knows Nathan’s body is tired and needs a break. He knows mom and dad need a break as well. We do what we have to do and often times ignore the reality because it is just too hard to accept. Today is not dark, it is not heavy, is it not hard. Today is a perfect day. it is the first time in three years we feel peace.
Over the next three months Nathan will have a chance to enjoy the sun and play outside with the other children. He will get to run in the ocean and play with his trucks. Unfortunately, so many of the children we see every other week at the oncology clinic will not have that same opportunity. Some of them may not make it through the summer. That is the true reality of what we are surrounded by on a regular basis. During this time off treatment, we will direct our prayers to those children who desperately need Nathan’s powerful village of prayers. They need us.
We know we still have a very long road ahead of us and Nathan’s journey to a cure is far from over, but today we celebrate this break. We thank God for giving us the opportunity to feel this genuine peace and joy.
May God bless all of you. Thank you for loving our Nathan and taking care of our family. We will be forever grateful for all you have done for us. Enjoy a relaxing summer! If you have some time, come join us as we party in the sun chemo free!!!
Love,
Mike, Beth, Nathan, and Samuel
Nathan and Samuel waiting for his MRI
Thumbs up to being chemo free!
