July 27, 8018
Good morning!
I hope you are all enjoying your summer!! It is hard to believe August is right around the corner and school will be here soon. Time is going way too fast! Nathan will be in first grade and I am not even close to ready to send him to all day school!! We know Nathan has been in your thoughts and prayers and I wanted to give you an update on what has been happening the past three months since he started the clinical trial.
We got home yesterday from another long week in Boston. Nathan had to go through the same series of exams that he did before we started the trial. It was three days of seeing countless doctors, nurses, procedures, pokes, and exams. This was probably the hardest time on him so far because his body is weak and everything is a challenge right now. When you are tired, the last thing you want is people poking at your body all day long. He always rallies and does what he needs to do, but this was a really hard week. Mike and I did our best to stay positive and keep him happy and busy, but our hearts were heavy as we watched our son endure so much.
On Wednesday, he had his first three month MRI to show the progress of the tumor since the trial started on May 3rd. We were please to see the tumor is slightly smaller since beginning therapy!! This is extremely encouraging news because Nathan has had a great deal of side effects and it was impossible to tell if it was being caused by the drug or the tumor. We will not know for another three to six months if the therapy is truly effective because it takes time to build up in the system. This is a drug that does not seem to show false results or rapid changes. If it outsmarts the tumor and we see smaller measurements on the scans then it is most likely killing the tumor cells little by little. Nathan’s tumor is in such a small critical space of the brain stem, so any small change is a win!
In June, six weeks after Nathan started the therapy he was hospitalized for drug toxicity. We were not sure at the time what was causing the issues, but we now know the drug is extremely hard on Nathan’s little system. He lost his ability to hold up his body, has had significant GI issues, bad skin toxicity that has caused rashes and nail infections, extreme fatigue, and mood and personality changes. He had to come off the therapy for 10 days. At that time, we saw everything improve. After restarting the drug, everything came back. Until this week, we did not know if the drug was working so we needed to keep him at the highest dose because that is the only dose that has proven results. He is unable to continue on the highest dose, so we reduced it and hope that it will continue to attack the tumor and make things easier on Nathan’s body. He will not be able to remain on the drug if some of these symptoms do not resolve. Over the next three months we will work to find the optimal dose.
Nathan is fighting really hard to continue with his day and do the things he loves to do. We have learned how to make things easier on him and still enjoy the day. He is frustrated and knows exactly what is going on now. He is older and wiser which is good and bad. We are so incredibly grateful to have Sean and Samuel who keep Nathan active and happy. They all love each other so much and are happy to be together.
Although the past three months have been some of the hardest times in our lives, we know we have an army of people helping us through it. We have the greatest family and friends in the world that make sure Samuel and Sean are being taken care of while we have had to do so much with Nathan. Samuel is incredible with Nathan. He instinctively knows Nathan is not his best right now and helps him do the things that are hard on him. Although, he does set his boundaries. When Nathan asks too much Samuel has now started to reply with, “I am not your assistant. I am Samuel, AKA Boss Baby.” Nathan then snickers and says, “He figured me out again mom.” As I am writing this, they are at the table hugging and telling jokes. Thank God for brothers!
Thank you for your emails, cards, phone calls, and texts of love and support. We will continue to take things one day at a time and be grateful for each healthy day and each win. This week was hard, but it was definitely a WIN!
Sending love and hugs to all of you!!
Mike, Beth, Nathan, Samuel, and Sean
Not so happy waiting at the ophthalmologist instead of playing with the cousins!
