May 9th was the big day! The day we went and saw the oncologist for Preslie. Honestly, hearing the word oncologist in general is tough, but knowing that it is in conjuction with your 14 month-old daughter, makes it harder. I know think the two worst words in human language (at least when put together) are "Pediatric Oncologist". Those two words just aren't supposed to go together, I mean Children's Cancer Specialist? Children aren't suposed to have cancer! That is just insane!
I was afraid that Monday was just going to snail crawl by. Our appointment was at 2, and we had to be there at 1:30 to register. Brittany said she would watch Parker, and the fact that we live clear on the other side of town from St. Luke's Boise meant I had to leave at about noon to get Parker dropped off, and get back on the freeway and to the hospital in time.
The Pediatric MSTI (Mountain States Tumor Institute) is in the Children's "specialty" hospital next to St. Luke's downtown. I walked in the downstairs level and there it was off to the right "Pediatric MSTI Clinic" and I'm sitting there thinking about my dad. He was diagnosed with Testicular cancer in 2009, underwent surgery to remove the tumor, and then 4 rounds of chemo. And it was tough chemo. I guess the strength of the chemo depens a lot on the type of cancer you have. Stage 4 breast cancer is not curable under most scenarios, so the doses of chemo are not so extreme, it's more of a make the patient comfortable. Testicular cancer is one of the only kinds of cancer that is considered curable, so they hit it really hard with chemo. During those six months my dad was green and yellow, he lost all of his hair, most of his eyebrows and eyelashes, and was sick most of the time. Noise bothered him. Light bothered him. Chemo causes disasterous effects on your intestinal system. And my dad was 49 when he was diagnosed. More than capable of taking care of himself for the most part and relying occasionally on my mom to help bring him medicine. He could talk, he could communicate with people. I just kept thinking of Preslie, and how she only says a handful of words. Most of the time we find out what she wants by trial and error, or her "uh uh uhing" at something and pointing. She can't tell me if her stomach hurts. Or if she needs some tylenol because the light is hurting her eyes, or the noise is giving her a headache. She's still in diapers, so the poison that they would be injecting into her system would end up in her diaper, against her skin, cause terrible sores, and she would cry and look at me to fix it and make her better, and I would just end up taking her back to another treatment.
My parents have a neighbor who is a MSTI nurse. She told my mom that they woudln't have referred Preslie's case to an oncologist unless they knew it was cancer. That really didn't leave much room for hope. My parents also have a lady that goes to their church who had her 2 year old boy diagnosed with leukemia and they went back East for treatment. We were told to expect to do some treatment, most importantly a bone marrow or stem cell transplant in Seattle or Salt Lake at the Children's hospital.
Everyone kept telling us how hectic and busy things were going to get, and how we would need to let family come in and help out and let Eric and I have a break, and all I kept thinking was, "You're seriously thinking I will ever leave my baby girl again? I can't fix this, but I can be there to help her through it."
And all these thoughts just kept running into my head the fifteen steps that I had to walk from the entrance of the Children's Hospital to the entrance of the MSTI clinic. I walked in and checked in, the staff was so nice. I'm sure they deal with ailing kids and concerned parents on a daily basis, but I appreciated their concern, and how they would sit and smile at Preslie. She told me to take a seat until a nurse came out to register us. I looked around at the other people in the waiting room.
Sometimes I forget that "pediatric" applies to anyone 18 and under. I looked aroudn and the only other two patients in the waiting room were at least 16. I kept thinking, what am I doing here with this little one year old? The boy in front of me had a cast on his leg and crutches, his mom would get up and grab magazines for him - I was pretty sure he had just had a bone marrow transplant into his shin bone. The other was a teenage girl sitting with her older brother, playing on her laptop waiting for them to call her back to a treatment room. They both had hair, they both looked surprisingly well, considering what was no doubt going on in their bodies at the time.
The registration nurse came out and took me back to her office. Our experience immediately became better when we walked into a room covered in Minnie and Micky Mouse, I think Preslie was in heaven. Eric met us in that room, and we were there for 30 minutes registering Preslie into every system they had. And I kept thinking, this must be it, they must be registering us so extensively because they know what she has, and they know we will be here. But I still couldn't believe it.
We went back out into the waiting room for our appointment. And I just kept drifting between thoughts of "this is going to be like a new home for us" and "there's no way, he's going to discharge us because nothing is wrong." It's like all you want to do is be right. You want to leave the doctor's office and say "Ha, I KNEW it! I knew that's what he was going to say!" But reason and logic were not on my side. I'd had enough of logic, logic and everyone logical had been telling me for three weeks that our daughter had leukemia and the next two years were going to be very hard on us. Logic kept telling me to be prepared for the blow. But my heart just didn't want it to be true.
Sarah, Dr. Camilo's nurse came out and got us, she took us back to a room covered in butterflies hanging from the ceiling for Preslie to stare at. She said Dr. Camilo was on in-patient services this week (he was attending to all patients from their clinic that were hospitalized) and was running a little late. She took a full history from us, then said that a resident was in the clinic too and Dr. Camilo was interested to see what the resident would come up with.
Then the resident came in, and we were with him for a half an hour, doing all sorts of physical checks, and more history and questions. They were all very nice, if it hadn't been such a daunting prospect it could have been an enjoyable experience.
Dr. Camilo finally came in and talked with us, got a full history again and then laid the "good news/bad news" on us.
Good News: It is VERY rare that a child be diagnosed with myelodysplasia (pre-leukemia) which is what the Pelger-huet nucleus in her blood work was showing. It does happen, and he had treated it, but it is rare.
Bad News: If she is diagnosed with myelodysplasia, she will have full blown leukemia in less than two years.
Good News: It is possible that the nucleus anamoly they are seeing is genetic, and that one of us (eric or I) may have the cell ourselves. This would mean she was born with funky looking cells, and they would never turn into anything.
Bad News: It is very rare that the Pelger-Huet nucleus is a genetic cell.
He wanted to run some blood work on all three of us to see if he could see any sort of genetic patterns in us. Eric said, "What are the chances that one of us has passed it on to her?" Dr. camilo "Very small" I asked him what the chances were that she had myelodysplasia, he said "Very small" so I said, you're telling me we have two one-in-a-million chances to choose between, and he said yes.
We were supposed to be able to get the results back in 20 minutes, but the hospital took too long taking our blood work and Dr. Camilo said he woudl call us on Tuesday with the results. We were really bummed. It was like we were playing the waiting game all over again. It seemed like we had been playing the waiting game for an entire month, and that's not easy when the potential health of your one year old is on the line.
But we still left with a renewed sense of hope. The weight on our shoulders was a little lighter. We now had something to hope for, a light at the end of the tunnel, rather than there being no other option before, we now had something to hope for.
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