**Note: this is long. Deal with it. My blog. My miracle. I can be long-winded if I want. :)**
You always hear about those amazing miracles that happen to people. You read about them. People share experiences in church. But this week was OUR turn. We've had a rough year. Usually, it's fine. But let's be honest. No one wants their little boy to be diagnosed with cancer. And when that horrific thing DOES happen, you think "Surely the dear Lord wouldn't give us any more trials. Surely THIS is all we can handle and still actually function."
Well, this week our world turned up-side-down all over again. A few weeks ago I was chatting with Carter's oncologist, Dr. Reaves, about his very uncooperative liver. She suggested we test him for Hepatitis C. She followed this suggestion with, "I'm SURE he doesn't have it. But let's just cross it off the list." I agreed, giving it no more than a fleeting thought.
Fast forward a week, she called me to let me know about his current liver counts and then told me his Hep C test came back in the "Gray Zone". That means that is wasn't negative.... wasn't necessarily positive, but it wasn't negative. She said we would retest him when he came back in in a few days, reassuring me that it was merely a mistake. After all, he doesn't shoot up (we keep the drug use to chemo drugs :)), he's not having sex (that we are aware of :)), I was pretty darn sure I don't have it so he couldn't have been born with it, and the chances of him getting it from a blood transfusion are anywhere between 1 in 2 million to 1 in 10 million. So, surely it was a mistake.
Fast forward again to Monday night, February 13th. We were dropping Valentine's off to my kid's best friends (Chelsea and her kids). They wanted to play for a minute so we went in. While we were there (I'm so glad I was with her and not alone since Bryan was working), Dr. Reaves called me with some VERY unexpected news. "His Hepatitis C test came back positive. I am so sorry." We asked if there could be ANY mistake? Could it be a false positive? No. He had (basically) 2 positive tests. One non-negative and one positive. There was no mistake. Then it got even worse. Dr. Reaves continued, "If he DID get this from a transfusion, we need to be safe and test him for HIV." Raise your hand if your 6 year old has been tested for HIV... no one? So we're alone on that one?
We were STUNNED. How could this have happened? Who dropped the ball here? What kind of irresponsible _____ (fill in any nasty word you want there) would donate DIRTY blood? Who is responsible for RUINING my child's life? Cancer goes away. Hep C? That doesn't. Immediately, Bryan did as much research as he could. I cried. And cried. And cried. Then I cried some more.
Bryan and I were both a little mad. What kind of God would do this to our little boy who has already been to hell and back in the last 11 months? Why would God give us this trial on top of what we are already dealing with? Why would He give CARTER this trial? Would Carter give it to his wife? His children? Would he even be alive long enough for that to happen? What would take him? Liver cancer? Liver disease? And how long until that happened? And all of this because someone was irresponsible.
The anger went away. Quickly. The sadness did not. I cried all Monday night. I woke up and laid in bed and cried more on Tuesday morning. I wanted answers. We prayed and prayed and prayed. And not just any prayers. We prayed for a straight up miracle. We didn't ask for a miracle with the cancer. I knew before they told me for sure that it was cancer that he had cancer and that we would have to see it through to the end. I knew cancer was our battle to fight. I told Bryan that we couldn't be angry with God if we wanted him to heal our son. Bryan had given Carter a blessing on Monday night. It was a good one.
By Tuesday evening we had some statistics that were more reassuring. We felt peace. Not because of the stats but because we knew everything would be ok. We weren't sure what "ok" meant. We just knew things would work out the way they were suppose to. We asked our siblings, parents, Bishop, and Relief Society President to join us in a fast on Wednesday. We asked them to fast for a miracle.
We know God loves us. We have NEVER doubted that. We know he hears our prayers. We know he is there. But we also know that things are on HIS terms. If it is not meant for our little boy to be healed, then he won't. And we were also ok with that. We were ok with however this was going to work out. We had no choice, once again, but to put our son's life in the hands of our loving Father in Heaven.
Before anyone knew (even our siblings) the Bishop had texted Bryan. He said he had been thinking of our family and wanted to check in. We knew that was the Lord's way of telling us that He was there; that he was hearing our desperate prayers. The Bishop was in tune and listening to the spirit and I am SO grateful that he listened and texted Bryan. That attention and little prompting was something we needed to know that He was there for us.
Wednesday was long. We waited patiently for test results for Bryan and myself. (We went with Carter to get tested on Tuesday evening. We wanted to make sure Bryan and I didn't have it- therefore giving it to Carter- and Carter's test was being sent to Mayo Clinic to see how concentrated the virus was in his body. It's called a Viral Load test.)
We continued to feel peaceful and informed those who absolutely had to know... his teacher, the school nurse... people like that. The list was limited. We didn't know what kind of beast we were dealing with quite yet so we wanted to keep things quiet until we did.
We had a lot of answers from the Internet. By this point we knew that the chances of him passing it to his wife were less than 1%. Even if she DID get it, the chances of their children getting it at birth were less than 5%. Even if they ended up with it, the chances of their little bodies fighting it off by the time they were 2 was very good. We also knew that the chance of him getting liver disease and then a liver transplant were only about 25%. We knew that his chances of it morphing into liver cancer in about 20 years were only about 4%. All of this was very encouraging.
However, we also knew that only about 15% of normal, HEALTHY people are able to fight if off with or without the use of chemotherapy. Yep. Treatment for HepatitisC is 48 weeks of intense chemo. And it's super nasty stuff. Interferon. It's for sure going to make him sick and often times they wait until the kids are teens to even treat it because of how sick it makes them. Because of his cancer, Carter's chances of fighting it off were about 0%. His immune system is pretty much nonexistent. Wasn't going to happen. Not while he was getting treated for his cancer, anyway. We also knew that he more than likely wouldn't be able to start the treatment until after his cancer is completely gone. We would be taking weekly trips to Denver. He gets a daily pill and interferon through an IV each week. (Hopefully they just leave his port in and use that?)
Thursday Bryan and I went in to see Dr. Reaves. We had a million questions. When would treatment start? When would we find out what strain of Hep C it was? What were the chances of his body just fighting this off by itself? Why hasn't the chemotherapy, which had killed nearly everything in his body-including him- killed the hepatitis? Could we be compensated? We don't want the money right now, but what if his family needs it? What if he can't get medical insurance? And who in their right mind will give him life insurance? And how on earth is his wife suppose to pay for a funeral? For those reasons, we wanted money.
Dr. Reaves didn't have a ton of answers. (We knew she wouldn't. She was referring us to a pediatrichepatologist in Denver.) She DID, however, have mine and Bryan's test results back. Negative. Carter for sure got hepatitis from a blood transfusion. Unreal. She was hoping that by early next week we would have Carter's test results in and we could move forward with how to get him the help he needed. She also knew at that point that his HIV test was negative. Phew.
My parents flew up Wednesday night to help us get through this. We were sitting around trying to get our mind off things late Thursday night (10:15) when my phone rang. It was Dr. Reaves. She had his test results (much earlier than she thought she would). I put her on speaker because I knew that Bryan would have different questions than I would. To our complete astonishment, they were NEGATIVE. There was NO sign of active hepatitis C virus in his body. It was a miracle. It was the sheer grace of God. We were, once again, completely stunned and speechless.
His immune-deficient, sick, suffering little body had miraculously fought off this hepatitis C. This should NOT have happened. Carter has been in the most intense part of his chemotherapy. This disease should have thrived in his body. Dr. Reaves is as stunned as we are. She has no scientific explanation. She has a million questions. She wants to run more tests and see if he has the antibodies for it. (Antibodies are the leftovers... kind of like the immunity for it. He would only have that if he had Hep C at some point. This could for sure be what flagged the tests in the first place.)
To say we feel blessed is the biggest understatement ever. Calling Bryan's parents and telling them... calling my sweet Grandma and telling her the whole story... telling our siblings that their fasting and prayers had been answered. Telling sweet Carter that his liver was going to be ok... it was all so rewarding. After a year of so many lows and a few highs, having news like this to share is so wonderful. I wanted to call CNN and tell them!
We know the angels around us went to bat for us. We know they pleaded our case to our Father in Heaven. I know one of those angels was my grandpa. I had an out loud conversation through my tear-stained eyes on Tuesday morning begging him to go ask Heavenly Father face to face to heal my little boy; to not make him suffer more than he already has. I know he did that. I know he, along with Bryan's grandfathers went and talked some sense into God. :) (Although, I'm sure the sense was already there... :))
We celebrated! We celebrated our child NOT having Hepatitis C. We celebrated him NOT having HIV. We celebrated him ONLY having cancer. What a wonderful, miraculous thing! Our Father in Heaven loves us. He knows us. He DOES hear our prayers. And he DOES answer them... sometimes He even answers them the way you want them answered. We are so grateful to have our little boy with us still and to have him only have ONE disease. YAY!