These are a few pictures from the days leading up to her diagnosis.
4 Weeks before diagnosis, end of the year school picnic.
3 Weeks before diagnosis, first week of summer getting free lunch in the park after swim lessons.
2 Weeks before diagnosis, cherry picking!
1 week before diagnosis, family movie night at the village to see Incredibles 2. Symptoms started during this week.
1 week before diagnosis, watching the car races at Meridian speedway. Symptoms in full swing.
The day before diagnosis, Wet and Wild parade at Eagle Fun Days. First day we really started to notice her refusal to stand or walk.
The day before diagnosis, Wet and Wild parade at Eagle Fun Days.
The morning before her diagnosis would come. She just finished getting her labs drawn in this picture. I remember looking at this picture noticing her paleness and fragile looking body. This was the picture I posted that morning on social media, asking for prayers regarding her unusual symptoms. I'll never forget the fear I was feeling in this picture.
On our way to getting admitted for the first time, the drive down to the hospital is a moment I will never forget. We wept the entire drive. I remember putting my hand on Cody's back, trying to console him as much as I could. Trying so hard to keep it together, trying so hard to cling to the belief that there was still a chance this was not leukemia. I stayed focus on the chance that this was a big mistake, I stayed focused on denial. I was determined this was going to be a big mis-understanding.
Our whole family had been waiting along with us throughout the day for the news about Lilah. I think everyone was worried about her.
We need to tell the family. We need their prayers. We need their help.
Through a video message I explained to both our families what was happening.
We got to the hospital. Everything just felt surreal. This is all just a dream. This isn't happening to us. Things like this don't happen to us; not to our family. We don't get cancer, that's for other people. Stronger people. More spiritual people. People who are more capable than us.
Transport came down to take us up to our room.
I remember walking through the doors of the secured unit seeing the words "Pediatric Oncology" written across the top.
This can't be happening. I just remember thinking how did we end up here? What is happening? I remember feeling fear and uncertainty about what was ahead. I have walked by this unit a hundred times thinking, those poor families in there. I can't imagine what those parents are feeling, I can't imagine what those children are going through!
I am the type of person who has to fast forward through charity commercials for childhood cancer because they make me cry.
On the outside I was still smiling, chatting in a friendly manner with the nurses who now accompanied us. On the inside, I felt so scared and was trembling all over.
We walked into the room, and saw the hospital crib bed and I just felt a little sick. Still just in complete denial that Lilah would be in one of them. When I saw babies hospitalized in these cribs, or even just seeing an empty one, I thought about the parents standing next to them. What must they be feeling? How could anyone ever get through such a thing. Those poor people, I can't even imagine what that would be like.
The nurses swiftly did their job. Asked all the questions. Said all the things.
Something felt so very awkward, like there was an elephant in the room. We knew we were there for observation and further testing, but that was about all we were led to believe at the time. The nurses seemed to know something we didn't. I felt like screaming.
Somebody just say it! What are we doing here?! What is happening!?
Finally one of the nurses just looked at us and said, "Do you know why you are here?"
I nervously spoke up, "We were told she needed further testing to see if she has leukemia."
The nurse responded, "This is a classic presentation of leukemia, I would say to prepare yourself it's pretty likely that's what she has."
Maybe she sensed my desire to know what they were thinking. Well I appreciate someone finally had the guts to say something, but I am sure she doesn't have all the information. There is still more testing that needs to be done. Lilah has to have the bone marrow biopsy first.
We were told the oncologist would be there soon. So much for rushing down! Now we were just waiting. Lilah was in great spirits. I remember having quite a few laughs together as a family while we waited.
They did have to start her IV and take labs, which she screamed through. She had done so well with her labs that morning she hadn't even shed a tear. This was so much worse. They put a little cuff on her arm to protect the IV line, and put her in a purple doggy hospital gown which she loved.
Finally, the oncologist walked in. I remember the first thing that went through my mind was that he looked so familiar to me. The nurses finished up, and we sat down to have a chat. Which we would later remember as, "the chat."
He quickly got to the point by saying,
"You are going to get a lot of information tonight, and there are just two things I really want you to remember and take away from our conversation.
First, I am 99% certain your daughter has leukemia.
Second, it is very treatable. "
There it was. Just like that. It hit me in the chest like a ton of bricks. I felt my mind and thoughts just start reeling.
I remember glancing at Cody in utter disbelief and confusion. I thought we were here for observation and testing. We weren't supposed to be having this conversation yet.
"You don't need to have the bone marrow biopsy to confirm the diagnosis?" I asked.
He explained that with her current lab results and her symptoms of leg pain, paleness, and long term low grade fever, this is a very classic clinical presentation of leukemia. At this point the bone marrow biopsy was to confirm which kind of leukemia she had, but they were already certain she had leukemia.
The kind of leukemia you have is very crucial information. I had done enough reading that day to know there were several known forms of pediatric leukemia, and if you had to have a cancer of the blood, the one you want to have is ALL (acute lymphoblastic leukemia). The doctor confirmed this. It had the highest curability percentage and the least intense course of treatment.
He then explained all that was happening inside her body. With leukemia it is not staged like other cancers, because it is already everywhere. It is in her blood. Every organ, every lymph node, every inch of her body was already infected with it. He told us leukemia starts with just one cell. That cell has a DNA error and is programmed never to die. That one cells then turns into many thousands of cells over time. Given her age he informed us her disease probably started when she was just a few months old. He also said there is no known cause and that it was nobody's fault. It somewhat helped with the tremendous guilt we felt instantaneously. Did we catch it soon enough? How could we not see this was happening?
We learned her liver, and spleen and lymph nodes were all enlarged, full of leukemia cells. He told us her bone marrow was absolutely loaded with them, causing pressure and pain in her lower legs. He said if he could show us, her bone marrow would look like a sponge dipped in white paint and it would literally be dripping with these diseased white blood cells.
Her diagnosis upon admission was pancytopenia, low red blood cells, white blood cells (neutrophils), and platelets. We learned that she was extremely anemic. Her hemoglobin was at 5.8, normal is 12-14. Her heart was working on overtime to keep her body and organs perfused. It was causing a heart gallop and contributing to her extreme fatigue. Her platelet count was also below 50 thousand units, so before she could have her procedure tomorrow she would need 2 blood transfusions and a platelet transfusion.
We then had a long chat, probably close to 2 hours. He briefly talked about what would happen over the next few days, and patiently answered all of our questions, never once acting like he needed to go. He wanted to make sure he spent all the time with us that we needed. He told us to plan on anywhere from 1 week to 1 month in the hospital which would depend on her diagnosis. The rest of that conversation was a blur, we just held on to those two things for that night like he said.
Lilah has leukemia.
It's very treatable.
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