Today, if only for the briefest of moments, I felt what it feels like to have a child with cancer. And, let me tell you, it is not good.
Details you say? OK. Here goes....
Over the winter, Phoebe had a few strange symptoms that occurred concurrently.... She had a night where her temperature dropped down to 94.7 degrees F (which is considered hypothermic), followed by a few weeks of temperatures that were occasionally in the 95's or 96's. She also wasn't gaining any weight (over the course of a month) when she had previously been growing like a champ. And, for most of her life the lymph nodes behind her ears have waxed and waned, but are often slightly enlarged. After a quick google search (I know, I should have never looked) the results I kept finding pointed to 'lymphoma'. My heart dropped. I scheduled an appointment for Phoebe and took her to her regular doctor. The doctor basically acted like I was crazy. Said that Miss P was happy and smiling and so was clearly thriving and I should stop worrying. And, if you can believe it, I later saw my chart and saw that the doctor had written a comment on Phoebe's chart that explain me, the mother, as a "very worried woman". Humph.
I hoped that doctor was correct, and that nothing was wrong with Miss P, but I knew that my mind would be concerned until I knew for sure. So, we actually got Phoebe on a private insurance plan (she was previously on temporary insurance with the state) so that we could bring her to Finn's doctor. He also said that she looked great, but that my concerns were valid, and he agreed that we should do some blood work just to be on the safe side. Bringing a 1 year old to get blood drawn was nothing less than heartbreaking, but at least I felt like we were going to have an answer and it would all be worth it for the peace of mind.
The results came in, we meet with the doc, and he mentioned a few things that were high or low, but said that nothing looked really out of place to him. He mentioned wanting to run the results by a specialist, just to be doubly sure, but that he thought we were in the clear.
Todd and I breathed a huge sigh of relief and could finally move on with our lives.
Then the phone call came.
A few weeks ago, we got a phone call from the pediatric hematology and oncology department at the OHSU children's hospital. They told me that our family doctor had sent in Phoebe's blood work to a specialist, and that some things were concerning and they wanted us to come in for a visit. I tried to get more of an answer, but apparently the person who does the scheduling does not work with the doctors, and she only knew that we were supposed to come in for an appointment and had no idea why.
My heart dropped, and I scheduled for the soonest available appointment which was today. I anxiously (not in a good way) awaited the appointment running through scenarios in my mind. I thought that she was probably fine.... if not, our family doctor would have called to talk to us more, right? I figured this was probably just a follow up type thing, maybe wanting to take more blood and see if the slightly high and low things were back to normal. Hopefully.
We showed up for he appointment today, and my heart sank as we walked into the waiting room and saw several children with bald heads, obviously from chemotherapy. Everyone was exceptionally nice to us (like you would be to a family who had a child with cancer). We were ushered into a room where they weighed Phoebe and put a paper ankle bracelet on. As the nurse was blowing bubbles for the kids, she said that we would need to have an ankle bracelet on for each visit. Each visit? What do you mean? She then said that she would normally talk about medications now, but said since Phoebe was not on any
yet, we didn't have to do that. Yet? What was happening?
Then we got moved to another room where a nice young nurse asked us if we needed anything to make our appointment for comfortable? How about telling us what the heck is going on?!? She assured us that the doctor would be in soon. I sat there for the next few minutes ready to throw up, faint, or pull all of my hair out. Our child must have cancer. We are in an oncology ward, talking about next visits and medications. Uggg.
Then the doctor came in. Our first question was what is happening? Why don't we know why we are here? To make a long story short, there was basically just a lack of communication from all ends. Phoebe's blood work did not indicate that she had cancer, but there were also a few things, combined with the other symptoms we mentioned, that could point to lymphoma or other issues. But not definitively. He wanted to probe deeper and give us a more accurate assessment than he could see from the blood work alone. We spent about an hour talking to the doctor, with him examining her and asking us all sorts of questions, and in the end, they said they think she looks great.
She is thriving, happy, healthy. They weren't able to precisely explain the low temperatures or the exact reason why her lymph nodes are often swollen, but they said they weren't concerned. Today, Phoebe does not have cancer. And I am so happy.
Leaving that hospital, I was happy that we were leaving with a cancer-free child, but I was also overwhelmed by sadness for all those families who weren't. All of the parents who leave finding out their child does have cancer; they will be having more appointments, lots more medications, and a whole lot of stress and worry. I am certainly glad that it is not us, not today at least, but it is still someone. Lots of someones. And it is completely heartbreaking.
Today I will be thankful that I have two healthy kiddos, and my heart goes out to all of those whose littles are not so healthy.
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