August 2, 2015
Good evening,
I hope you are all enjoying the summer as much as we are. After the rain in Pittsburgh finally stopped, we have enjoyed our time playing in the yard, riding bikes, and playing at the park. We have tried to make the most of every day that Nathan has been chemo free. We waited almost three years to get a break, so we did not take it for granted.
Last week Nathan received the first MRI since he stopped chemotherapy on April 27th. After each scan, we travel to Boston to meet with his team of doctors. There is a period of time that we spend gathering information and opinions from numerous physicians at Children’s Hospital of Pittsburgh and Dana Farber Cancer Institute in Boston. It is a complicated coordination of care with many different ideas on approaches to treatment. Although it is confusing at times, we feel that Nathan has some of the greatest minds in the field working on his case. We are confident that we are gathering as much information as possible before making a decision on how to best treat his tumor and symptoms. Unfortunately, his case is not straight forward, predictable, or easy. He is young and his response rate to standard chemotherapy has not been positive thus far.
On April 27th Nathan finished his one year cycle of Avastin chemotherapy. Making it to the one year mark is always a huge accomplishment. Nathan’s neuro oncologist in Boston reminded us in April that we will hope for stability and even if it lasts a few months that is ok. The overall MRI scan appears to be mostly stable at this point. There are areas around the visible tumor that appear to be enhancing slightly from the last scan. Based off of the scan alone, things look quite good. Although, when treating Nathan’s type of tumor, his current symptoms out weigh any MRI images. If he is symptomatic it is most likely because the nerves are being compressed in the brain stem and the symptoms are preceding the scan.
Due to the placement of his tumor, many areas of his body can and are effected. There are certain symptoms that we can wait and watch and there are others such as swallowing and breathing where there is no room for growth. Unfortunately, those critical areas have declined since his last MRI. We believe he is aspirating his own saliva which causes him to regularly cough, choke, and could possibly be the cause of his most recent symptom of breath holding. In addition, he is starting to have weakness on the left side of his face which causes other challenges such as drool, weakened ability to chew efficiently, and inability to swallow liquids safely. I keep a detailed daily summary of each of Nathan’s symptoms and the frequency in which they occur. This becomes the basis for many of the decisions on treatment.
The doctors are not sure at this point if the symptoms are coming from inflammation that can happen after coming off of Avastin too quickly or there is true tumor growth. Unfortunately, the only way to tell and protect any new growth at the same time is to start back on chemotherapy every other week. Nathan will receive his first treatment tomorrow morning.
This has been a long road for all of us and I would be lying if I didn’t say we are all tired. It is hard to accept that we have hit yet another detour. It is extremely difficult to watch certain symptoms decline and just sit back and watch. As much as we want to pretend everything is ok, we know it is not and we know this is the path we have to take right now. One of the biggest challenges of managing pediatric brain tumors is making sure any one nerve is not compressed to the point where the damage can not be repaired. We have to do everything we can to help Nathan’s swallow continue to strengthen.
Our every hope and prayer at this point in time is that Nathan will receive two or three rounds of chemo and his symptoms will return to his baseline. At that point, we can spread apart the frequency of the treatments and slowly ween off again. We will trust Nathan’s doctors to use their many years of experience to manage any new tumor growth and control his symptoms.
I have not told Nathan that he is going back on chemotherapy. He has been so proud to tell people that he is chemo free. After a long week of travel, tomorrow will be another one of those challenging days as a parent. I have to look at my little three year old and tell him we will be going to the hospital for his medicine and he has to start getting IV’s again. I am sure he will have a thousand questions and will make the most of the situation like he always does. I hate that I count on him to give me the strength to get through these difficult times. He really is my rock. His smile, his energy, and of course his laugh will make all of this manageable.
I know you all pray for Nathan regularly. I am confident God is hearing our prayers. I ask him every night to help Nathan heal from the inside out and to help his body to fight this awful disease. He is certainly not giving us the most direct route to a cure, but I know if we are patient and strong Nathan will get there. We will all make sure he gets there because there is no other option.
Thank you for all of your love and strength. We have the most incredible support system in the world!
Much love,
Mike, Beth, Nathan, and Samuel
He just loves these Minions. This is what happens when dad takes him to Target.
July 23, 2015
First follow up MRI after stopping chemo on April 27th.
4th of July with his best buddy!
