The One With the Second Diagnosis

So our weeks had been going by okay, and we were just starting to get used to the idea that Preslie didn't have anything wrong with her and that we were just going to have to have her in a sweater in the middle of August due to her core temperature staying at a steady 96.2 degrees.

On April 26th, a Tuesday, when Eric and I got home after work and a family party we opened a letter from Dr. Rand (Infectious Diseases) detailing out our visit with him the Friday before. It also said that all the tests looked good, and he referred her back to our personal Pediatrician with the diagnosis of  an overactive autonomic nervous system.

Wednesday, the 27th, I had the day off. Two days out of the month I get together with other ladies from church, and we teach 8-11 year old girls fun things. It's called Activity Days, and I love it. We have 28 girls in our group, although all of them are not always there, but usually there is a pretty good number. This time I had one of the activities, we were making bath salts for our Mom's for Mother's Day. I had gotten all of the supplies in the car, and left to pick up one of the girls in our neighborhood. Right as I pulled into the church parking lot my cell phone started ringing.

I looked at it, didn't recognize the number, and debated briefly between just ignoring it. I finally decided to pick it up.

"Hi Crystal, this is Dr. Rand, how are you?"

I told him I was good. I had gotten his letter yesterday and was glad that everything seemed to be looking okay.

"Well, that's actually the reason why I called. . . ."

Uh-oh.

We then spent the next twenty minutes on the phone while I was trying to set up this activity, putting chairs away in the rooms, setting up tables, getting the supplies out, and trying to talk to this doctor while there was a young girl in the room with me.

He told me that he had a pathologist double, and triple check some blood smears because West Valley (the first hospital) had reported seeing some interesting things, and they had been corroborated by St. Luke's. He said he'd just gotten off the phone with the pathologist who reported seeing something called a "Pelger-Huet nucleus" in her smears. Dr. Rand didn't even know what it was, he said he wikipedia'd it. Then he explained to me that this nucleus is seen in blood when children have an advanced case of myelodysplasia, and that myelodysplasia most commonly in children her age, displays as leukemia.

I was just sitting there, nothing was sinking in. He just kept saying, "Are you understanding what I'm saying? Am I explaining this well?"

I told him yes, I understood, and that I was grateful for his call. He told me he was sending me back to our pediatrician for further blood tests. He said there was a slight possibility that whatever sickness put her in the hospital had caused problems with some of her blood cells, and it might clear up on it's own.

The activity with all the girls was surreal. I was there, trying to teach these young girls that I love, how to make bath salts for their mom's, and yet I couldn't get that phone call out of my head. I kept looking over at Preslie crawling around ont he floor and kept thinking, oh my gosh, we're going to have to do chemo, she's going to lose all of her hair . . .

Finally the activity was over, I ran out to my car, got the kids in and drove out to Meridian to my parent's house where Eric and I sat down and told my parents, and grandparents, and my sister. Eric gave Preslie a blessing, my Dad gave me one, and my Grandpa Carpender gave Eric one. (Blessings are personal prayers on behalf of one person, quite often with promises and guidance given.)

Both Eric and I got the distinct feeling that things were going to be okay, we don't feel like it is Preslie's time to go. She will be okay. But we definitely feel like the next couple of months, maybe even years could be extrememly difficult for us, with the opportunity for huge growing experiences.

Thursday morning, Dr. Lanuza called, she said she had talked with Dr. Rand, and set up an appointment for Preslie to come in for her one year immunizations (that we are behind on because of how sick she keeps getting) and blood tests on May 20th. The date seemed like forever away, but they were hoping that the longer they waited, if on the slim chance it did end up being her sickness tearing up her blood cells, that she would be better by the time they took the blood test. She also said that she had a call in to the Hematology/Oncology clinic here in Boise and she would call me when she heard from them.

That afternoon, Dr. Lanuza called back. She told me she had just gotten off the phone with Dr Camilo, the Oncologist. Her exact words were, "He has reviewed the case and has decided to take over from here, he wants to talk with you guys and take blood work, he doesn't want me involved."

Well that kind of seemed to seal the deal. There's only one reason an oncologist gets involved, right?

So the Oncologist's office called on Monday. She said Dr. Camilo had reviewed all of Preslie's case notes, she said that the oncologists then triage the patients. If things look really bad, they ask that the patient be seen right away (that day), then it's within 1-2 weeks, or the first available appointment (which is usually two months out). She said that if it made us feel any better we were in the middle, so chances are it didn't mean things were too terrible.

That does make me feel better.

It's funny cause when we left Dr. Rand's office after the first diagnosis of an overactive autonomic nervous system, I still felt really uneasy. Things just didn't seem finalized to me, it just seemed like no one could explain what was going on, so they didn't try looking elsewhere. After the phone calls letting us know blood tests were looking like leukemia, even with as terrible of a diagnosis as that is, I was comfortable. It's not that I want her to deal with that, I would rather take that burden, but I know that childhood leukemia survival rates are up around 100% and that just seems to help in explaining what has been going on, why she is always sick, why she has so many problems.

Myelodysplasia can also mean severe anemia requiring frequent blood transfusions (I'm not sure what frequent means, I think that's a relative term), and several different stages of anemia that all seem to progress into leukemia. If this ends up being what the Oncologist diagnoses Preslie with, it appears almost positive that within the next two years, or earlier, she will end up needing a bone marrow or stem cell transplant. Fun and exciting times I tell you.

But through all of this, I am reminded that God is good, and he knows our lives, and he knows the outcomes of our lives before we even do. I'll share one of the quickest examples.

Eric and I were talking about seeing if we could get on Aflac's Cancer policy, just as a supplement to our insurance. I called our business's original rep who I can never get a hold of, then I started sending an email to his boss. I have never talked to this lady before on the phone, I have sent a couple emails back and forth, but I've never met her, don't know anything about her.

I decided to call her instead of sending the email. I called her Tuesday morning and said, "I was hoping to review the possibility of getting signed up under the maternity and cancer policies with you, do you have time to discuss them?"

And she said, "Funny story, I am sitting in the parking lot, right in front of your building. I felt like I needed to come in and talk with you guys."

And with situations like that, I know that everything will be okay. Even if that means leukemia, and chemo, and radiation for two years, and no hair, and bone marrow transplants, and excessive hospital bills, and stress beyond belief . . . . there is an end to that tunnel, and everything will be okay.