I am copying and pasting this from another brain tumor family. It is one of the most well-written explanations as to the particular stages to the journey we are on, where we are and have been, and where we are headed. I hope this helps to inform you all! The following is her writing:
In the brain tumor world (perhaps the whole cancer community, I'm not really sure) there are several ways to describe where your child is at in their brain tumor journey. There are those who are on active treatment of some sort, either scheduled for surgery, or undergoing chemo and or radiation. Those who have already completed their treatment, their scans show no evidence of disease (NED) and they go for follow up scans and meet with several other types of doctors to treat the fall out of their treatments (endocrinologists, neurologists, orthopedic doctors etc). Those who have entered the dreaded palliative care part of their journey, where the medical world can offer no more hope and can only provide medications to ease the child's pain as they prepare to leave this earth. And, then there are those of us who are "watching and living". People on this portion of the journey may have already undergone surgery, chemo, or radiation or a combination of the three, and for the most part their scans still show some disease, but doctors want to watch and wait to see what happens.
For many children with low grade gliomas, watching and living is a fact of life because unless a full surgical resection is achieved, chemo will not cure the disease; it might shrink the tumor a bit, but more than likely it will just stabilize it. The hope is that the tumor will remain stable for a period of time even after chemo is stopped. With radiation, there is more hope that the tumor will be "turned off" for good, but the potential side effects for children who are young are horrible. Radiation can cause strokes, a decrease in IQ, thyroid problems, growth and hormone problems, and those are just the ones I can think of off the top of my head. So, while radiation does offer some hope at killing these tumors, because of the potential long term or late effects, it is generally used as a last resort (at least in low grade gliomas). Many children with low grade gliomas go through a chemo protocol (which is usually at least a year of treatment) and then they will "watch and live" until the tumor starts to progress again, and they will again go on another chemo protocol. Oh and by the way, the chemo has many potential side effects as well, both short and long term. From what our oncologists have told us, low grade gliomas can go though long periods of dormancy (years) and then for some unknown reason they will start to grow again. So although it is WONDERFUL that Sammy has remained stable for almost a year and a half with no treatment other than her surgery, it certainly does not mean that it will not grow again in the future. Our oncologists have also told us that low grade gliomas in children to tend to arrest themselves when the child reaches maturity and they no longer present a problem, but there is no research available to prove this, it is just what they "tend to see" with these types of tumors. From what I have heard, some doctors think this is true, while others do not.
So, right now, we are "watching and living". In many ways we have been so blessed in this cancer journey, and I know that there are so many out there that would love to be “watching and living”. I know we are fortunate that Sammy’s tumor has “behaved” for the past year and a half. I know we are fortunate our daughter isn’t currently on treatment and we don’t have to contend with all the crap that goes along with having a child on chemo. And, I certainly know we are fortunate that we have not exhausted all medical hope and that we aren’t watching our child slowing or quickly wither away. But, that doesn’t mean that “watching and living” is easy.
For a long time, rather than “watching and living”, I was “watching and watching”. I was so consumed by the fear that Sammy’s tumor would progress that I couldn’t enjoy anything. I watched Sammy’s symptoms constantly. I still do sometimes, even after we just had a stable MRI, not even a month ago, at times I still convince myself that her symptoms are worsening. It is hard to be objective when fear seeps in. I remember one evening in particular where I looked at Sammy’s eyes from a strange angle and convinced myself her pupils were different sizes. I cannot even begin to describe to you the debilitating fear that washed over me. A huge surge of adrenaline shot through my body, I broke out into a cold sweat, my hands were shaking and I felt like I had tunnel vision. Her pupils were fine, I was just looking at her from an odd angle, but I didn’t sleep for the next two nights, and I was constantly looking at Sammy’s eyes checking her pupil size. Life can turn upside down pretty quickly when you have a child with a brain tumor.
I also feel somewhat isolated, as we have a daughter with a brain tumor, but because she isn’t currently on treatment, we very rarely see other parents of children with cancer or brain tumors. No one can understand what it is like to have a child with a serious medical condition unless they have lived it. While other parents try to understand and relate, it just isn’t the same as being able to talk with someone who can relate to every irrational thought you have ever had. I am so sick of people telling us how “lucky” we are. Really? We are lucky? Our daughter has a brain tumor. Now realistically, I know that we have witnessed many miracles where Sammy is concerned, and that things could be SO much worse. God has blessed us; God had mercy on us for some unknown reason. But, we are NOT lucky. I am sick of people telling me that this whole brain tumor “thing” is over; people who don’t have to talk to our doctors or who have not done any research with regard to Sammy’s tumor. I can understand that people have “gut” feelings about things, and that they may truly believe that this brain tumor “thing” is in the past. Boy do I hope that is true in terms of tumor progression, but our lives were forever changed on the day Sammy was diagnosed. This brain tumor “thing”, will never be over for us. No matter how long Sammy’s tumor remains stable there will always be the chance that it will grow again. Perhaps the chance gets smaller, but it is still there none the less. Sammy will also have MRI’s for a very long time, and she will be dealing with the damage the tumor did for the rest of her life. So, while I know people’s intentions are good and that they are trying to comfort me with these words, it can be frustrating and isolating when you don’t have access to other parents of children with brain tumors; people who get what you are feeling. Who don’t think you are being negative or pessimistic.
During this “watching and living” phase of our journey, we live a fairly normal life, and are surrounded by healthy children. You can’t help but want that to continue; for Sammy to be able to remain in school and do all the things kids her age do. We want her to just be Sammy and not the kid with the brain tumor. For now she gets to do that, and we are very grateful, because there are some kids that don’t get that opportunity, but there is always the fear that it will change. That Sammy will have to go on chemo, and miss school, and lose her hair, and lose her “normal” kid status. There is fear that her tumor will cause her issues with learning, moving, seizures, etc. Now there are many kids that are on chemo and have physical or mental impairments that get along just fine and lead happy lives, and I know Sammy could as well, but if that doesn’t have to happen, clearly I don’t want it to. Growing up is so hard for kids with normal challenges, imagine how hard it could be for a child like Samantha should her tumor start progressing.
Now, as I said in the beginning, each phase of this journey has its challenges. I am not saying that “watching and living” is as hard as some of the other phases, but it certainly isn’t easy. We are fearful much of the time, we feel isolated, and we so want our children to continue to live a “normal” life. Although, the longer we have been doing this the easier it has become. I have learned that my fear can convince me that symptoms are worse, and I am more able to calm myself and be more objective. I still analyze symptoms, but I have learned over time not to take my fears so seriously because I have had them many times in the past and they proved not accurate. I also don’t feel quite so isolated, as I have found and online community of people who are truly supportive and also have a wealth of medical knowledge. Our family will be attending a Brain Tumor week at Camp Sunshine this summer, and since we live so close, I have filled out an application to volunteer there during the rest of the summer. And as for hoping that Sammy will have a normal childhood that will never change, it will always be my hope, but I accept that other possibilities might be okay too.
So, that is a glimpse of our life of “watching and living”. Not sure how other families who live this life feel, but these are some of the things I feel. May is Brain Tumor awareness month…if you have read this entry, you are now more aware! J