The weather is beautiful here in sunny Florida. Spring has sprung! But there are clouds full of rain in my mind. Today was not a perfect day, but I am looking for the rainbow. Greco had an oncology appointment this morning. His latest MRI scans were discussed at tumor board today.
Let me preface this with.... Greco is doing awesome! His eyes look great. He is eating well, riding his bike with no training wheels, wrestling at practice every day, he is a perfect little 5 year old boy!! He is a bit rascally too!! I could not ask for more!
But the MRI scans show something different. The pons of his brain, which is in the very center of his brain, is continuing to swell. The pons is where the tumor is located. The tumor is actually intertwined within the pons, slightly bulging out of one side. The pons controls very important body functions like breathing and swallowing and facial muscles. The pons is vital to life. Greco's pons is swelling. According to the last two MRI's it is getting bigger..... The pons is getting bigger. The measurements of the tumor remain the same size, ( praise God!), but the pons is swelling. Of course no one knows why.
Another blow to us is that the scans have also shown " increased enhancement" to the area. This is terrible news. Increased enhancement means that in the scans the doctors are able to see more white areas. That means the blood flow to that area has increased. If the pons is swelling and there is more blood flow, something is starting to happen. The tumor hasn't changed size, but the organ it is in is swelling and more blood is going to it, which is not good news. Not good. ( Can you imagine sitting in a doctor's office hearing this report?? Of course, the nurse knows the exact moment to come in and ask Greco if he wants a prize. I can at least have a few moments to ask the questions that can't be answered. I can sit stoically and hear the words that I don't want to hear. )
I have heard this before, so I don't fall apart. I have sat in this same chair and in this same room to be told awesome news and terrible news. So anytime I make the trip to Saint Petersburg, I go with a positive outlook, but I always brace myself for what might come. I do not fall apart. I look for the rainbows, I look for the silver lining in the clouds that are swirling in my mind and my heart. My heart is breaking, but again, I have heard bad news before. My faith is strong, I do not fall apart.
Dr. Stapleton says that it appears Greco may be at the beginning of a relapse. Actually THE relapse, the relapse that always comes with these tumors. The swelling plus enhancement tell us that something is beginning to happen. In my research and in from what doctors have told me numerous times...... Radiation shrinks the tumor, but relapse is inevitable. When it happens it is fast and furious. Relapse can take the child in a matter of months, weeks or even days. Yes, days. The tumor comes back with revenge and can't be stopped.
But our story is different. From the very beginning of the journey, our story has been different. Greco hasn't followed the expected route of passing away within months of diagnosis. He hasn't lost the ability to swallow, the ability to use his limbs, the ability to walk. Greco isn't the typical DIPG patient. We have been blessed. Even though the doctor shared some really jarring news with us today, there is a silver lining. There is a rainbow.
Because Greco has lived so long, ( 2 years and 7 months ) since diagnosis, but more importantly his last radiation treatment was 2 years and 5 months ago, he can have radiation again. No it is not fun, but it works.
Most DIPG patients never make it long enough to get a second dose of radiation. In fact we were told he had had his lifetime limit when we finished treatment in October 2013. That's because DIPG kids' lifetimes are usually less than a year. Therefore they don't live long enough to get a second treatment. The Dr says that it is safer to do radiation after 3 years. ( less damage to the brain ). Of course we are still months away from that 3 year mark, but we are getting close.
Another rainbow..... All along it has been assumed that Greco's tumor is a high grade tumor. I assume most DIPG's are high grade, typically grow fast and are aggressive but are NOT responsive to chemotherapy. Which is the very reason we chose not to do chemo at the beginning. The doctor believes that Greco's tumor is low grade. Greco's tumor isn't behaving like a typical DIPG. If it was, he would have experienced relapse much sooner, mostly likely years ago. And more than likely, he would have already passed. Again, we are a very blessed family. Greco has lived much, much longer than we were told he would live! Praise God!!!
Low Grade tumors respond very well to chemotherapy. I know we said we would NEVER do chemo. But, if it can save my child's life, I will consider it. Chemotherapy is back on the table. Radiation is back on the table. This journey is far from over.
We still pray every single day a prayer of praise to God for taking this tumor out of Greco's sweet little head. Indeed, we do, at every meal, when we put the Frankincense on him, when we say our prayers at night praise goes up for this miracle. We are thankful for the time we have with a healthy little boy that has been told he has a terminal cancer.
I don't get to plan out how this miracle will unfold. But the plan is not in my hands. I realize that our journey is going to be long. Of course the easiest route would be that God just takes the tumor away and we are done with this chapter of our life. That could still happen. But as the clouds of disappointment and dismay swirl through my mind, I don't focus on that. I choose to look past the clouds. I choose to look for the rainbows. We do have HOPE. Yes, we will have more frequent MRI's. Yes, we may have to go through 6 more weeks of radiation. Yes, we may have to endure many, many months of chemotherapy. Our journey is far from over. There are clouds, there is rain. But look up, you can't have rainbows, unless you have the rain. The rain may be falling in my mind and even in my broken heart, but I am carrying my faith that God is still in this. HE is my umbrella in this storm.