After the initial blow of the news last week, I feel like we've had a chance to recover and get ready for the fight. I won't lie, it knocked me down for a couple days. But now I feel I have my head on straight again, and talking to some people, I think I need to explain a little better where we are at and what we are going to do. So, as you all know, the last MIBG scan, which picks up Nueroblastoma, found places of growth that were much stronger then the last scan in June. Through a detailed CT scan, one of those places turns out to be a 2cm mass on a lymph node behind his bowel. This is bad news for a number of reasons. See the very nature of this particular cancer, Nueroblastoma, is that it is in the nervous system, not just localized spots. That's where it builds up and we treat, but if is in a mass, then it's also throughout his body. So we could treat this mass (remove it, radiate the area), but experience tells the specialists that it will come back in other places. This is just the tip of the ice berg, so to speak. This is where they are saying that its a very real possibility we will not be able to cure him. We may (and we hope we do!) find treatments that work to hold it back, or even shrink it for a while. But the reality is, that is all that current treatments has been able to do. In the end, we run out of things that can keep the cancer from taking over. This could take a few years, or months.
Another reason this new growth is so bad, is that we never did reach No Evidence of Disease (NED) status. This isn't even a relapse--it is progressive disease. We will not proceed to full immunotherapy like is in the original treatment plan, which has made a big difference in fighting this disease.
Also the timeframe and speed this has grown in. Even with the two huge blows of high dose chemo he went through this summer that literally made his toenails fall off, this cancer has survived and grew. And right now, Drew is very limited in his options for treatments. We used all the stem cells we collected for the two transplants this summer. Without those "life lines" the harsher treatments are off the table. Also, his bone marrow is pretty shot from all the treatment he's just gone through, once again, limiting our options on treatments now. A lot of times there is some period before a relapse, and the body is stronger and better able to handle more aggressive treatments.
But there are some options. The one that everyone in our Oncology group at Mayo believes is our best option is to begin with this clinical trial through CHOP, the Children's Hospital of Philadelphia. Tomorrow we begin this trial. He'll still get some antibody treatment, which is good. And different chemo drugs that he hasn't had yet. The week will be a rough one we are warned. Antibody infusions are very painful. We are already starting a nerve pain mediation that has to build up in his system this weekend. Then they'll run a morphine drip at the same time the infusion is taking place. We are also warned that strong reactions can take place during the infusions. That is why we'll be back in the PICU so he can be closely monitored. We brace to see him in pain, being sick, losing his hair again. But we hope that it does what we are told it may--give him a chance to keep enjoying his life, while we wait for a cure. Please pray that we can keep him as comfortable as we can, and he doesn't experience any serious reactions this week! We also pray for it to make a difference, give us some success with shrinking this new mass and not allowing anything new to grow.
I've been thinking about hope. Whether accepting our medical reality, that Drew may not make it, is "giving up hope". I know God is bigger than science, and could heal him in an instant. The bible is full of stories of miracles performed by the hand of God, and I believe them. Jesus fed 5,000 people with 5 loaves of bread and 2 fish. He spoke the words and people were healed across the town. Jesus even brought someone back to life for goodness sake! The bible tells us that "with people it is impossible, but not with God; for all things are possible with God." (Mark 10:27). I believe this and pray for him to show his power by healing Drew, answer the prayers of mine and everyone else's, and have mercy on the happiest, cutest little boy around! So please, don't stop praying for Him to show his power and heal Drew as well!
But what if he doesn't? Then what? I believe in a bigger hope--a hope that goes beyond this world. I believe in a God that has a perfect plan, one in which He didn't even spare His own Son's life. So if its not a part of His plan to save mine, then my faith won't die, even if Drew does. I will be heartbroken, and will always have a place missing in my heart for him. But I would have the promise that I will see Drew again, and that God will use us through this, like he has already, for a purpose so much greater then Drew's life. God gave me these verses from Matthew chapter 16 last week, the morning of our appointment where we learned of Drew's new mass--"If anyone wishes to come after Me, he must deny himself, and take up his cross, and follow Me. For whoever wishes to save his life will lose it; but whoever loses his life for My Sake will find it." I believe this journey is our cross. And we have to choose to bear it, and be willing to lose a life, or what we wanted for our own life, in order to truly find it.
Does that mean we have to like it? Be happy about it? No. God showed me during the transplant through Jesus's example that we don't have to be happy all the time through our suffering. He reminded me how Jesus cried out and was angry during his time on the cross. He begged and pleaded with His Father the night before to find a different way. We can feel all those emotions as well, without sinning. But what His example also shows is that we need to continue in obedience, even if He doesn't change His mind. So I would be sad, I would be angry, I would be totally brokenhearted, but through Christ's strength, I would carry on, and be obedient to His Will, above my own.
I just want to add that it's not me that deserves any praise here, but God. I am just as weak and human as the next Mom. I have been (and will surely be again) on the floor, weeping, totally broken, at the thought of what Drew may have to go through. What Molly may have to go through. The pain I may feel if I have to go on without my wonderful son. And it's only through the strength of the Spirit I can follow Jesus's perfect example and add to my pleas of healing and mercy, "but Thy will be done." So praise be to Him, Lord of all, not me.
Please continue to pray for Drew. Again, for him to be in as much comfort as possible during the infusion of antibodies and the chemo. And that this treatment works for Drew, that God can continue to heal him. And also for us, that we can be prepared and rest in His strength wherever this path takes us. For Molly, who understands far more than we wish she did. She's doing okay, but its so much for us to handle, I can't imagine how a four year old can handle it.
Here's some pictures from the weekend, including Drew with his pickles at Pizza Ranch today. He doesn't eat much, but he loves pickles!
~Heidi
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