Monday, October 8, 2012

Hanging on to Hair

BJ's hair is really starting to fall out now. He wanted a hair cut yesterday, so we went out on the deck, and I gave him a hair cut. I know hair shouldn't be all that important, but it is. It deeply pains me to think about him losing all his hair. I know he'll still be the same BJ that he has always been, but it's an obvious and outward sign of what he's going through. Sometimes when he feels good, you can almost forget for a while that he's sick. It's the look of "normal" that I'm hanging onto. I know what's going on with my son, we've been living with it for 25 days now, but somehow, it's still a bad dream. When all his hair is gone, there will be no escaping this reality. Not that there's a real escape - it's just that right now, he looks just like any other kid - just a little pale, and tired, but normal for the most part. It breaks my heart that the last piece of "normal" will be gone soon. While we were in the hospital because of his fever last week, one of the doctors commented that BJ looked better than he did. It had some truth to it, because BJ still looks normal, except for his puffy cheeks.



I know that his hair will be gone, and we will go to sleep and wake up to face another day. I know that his hair will grow back eventually. I know that the people who matter will not look at him any differently. I know that he's super strong, and we will get through this, battling one day at a time.


Looking super cute after a hair cut

Sunday, September 30, 2012

Does it really have to be a fight against everybody?

Friday, 9/28 was a very stressful day. I'm sure more things could have gone wrong, but it felt like everything that could have gone wrong, did. We had an appointment for BJ's chemo treatment at 0930. At 0730, BJ woke up, was very dizzy and very pale. It got worse after we checked his blood sugar, which was low to begin with. He became sweaty, and was crying and I was doing everything I knew to try to get his blood sugar up. I called in to the endocrinologist on call, and reported what was happening. We told me to do what we were already doing, but then he said if he passes out, call 911. I knew what was going on here, and remembered from EMT class that you can pass out with low blood sugar, but when he said that, this situation became even more urgent. I had to shake BJ to get him to open his eyes and to get him to drink the orange juice. After a peanut butter and banana sandwich, his sugar was up more into a normal range. He got dressed, and we headed down to the clinic. He still did not feel well, but he knew he had to go. We got there at 10:30am, I found a wheelchair, and went back to get him from the car to roll him into the clinic. In the lobby of the clinic, the social worker who I had asked 3 times for my completed FMLA paperwork met us. I thanked her for getting my paperwork in, and she proceeded to tell me (once again - the first time on my voice mail) that she legally had 14 days to get my paperwork back. This was not the day to mess with me, and I told her that I really don't care about her 14 days. She said, well, if you needed it sooner, you should have asked. I reminded her that I had asked 3 times, and told her that I was not going to fight about this right now. She asked if the school had gotten in contact with me, and I said I had not heard a thing from them. She said she'd go work on that, and turned and walked away. That confrontation was the last thing I needed that morning. But it was just another piece of what made a rotten day.

During the wait at the clinic, we needed to check BJ's blood sugar, so he could eat lunch. I brought up again, how my glucometer was 20-25 points higher than the readings from the hospital's meter, and that I'm sure that had a bearing on how low his sugar went that morning. BJ's cancer doctor, Dr. Kaplan seemed to question that my meter was so inaccurate. (Really!?!? ---I know he doesn't know me, but that was just insulting!) I reemphasized that it was that far off the day it was given to me during the initial hospital stay. When the nurse came in to check BJ's sugar, I asked to compare readings. Their meter read 179...mine read 202. I asked for a new one. They brought in a new meter and took the one I had. Finally! Dr. Parker (BJ's endocrinologist), who we had just seen the day before had looked at every reading I documented since the day we came home from the hospital, and determined that we should raise (by 2 units) the insulin I give him at night. I told the nurse that if my meter is off by 20-25 points, then all those readings were higher than what BJ's blood sugar really is. I called in to Dr. Parker's office to let them know that the meter was definitely off, that Dr. Parker had raised BJ's Lantus shot based on the readings in my notebook, but that those readings were higher than BJ's blood sugar actually were, and that this morning's reading of 72 did not fit his symptoms this morning. The woman I spoke to typed it in and said she'd have the nurse call me back. When nurse Kelly called back, she immediately started talking about the variation between meter readings, and how it's expected that two meters would be off by 10-20%, depending on the range of the blood sugar. She would not hear me and my concerns, she chalked it up to just normal variation between meters. My concern is that his dose of insulin is based on the readings that Dr. Parker saw in my notebook, and that those readings were higher than actual. I cut the call off short, because I wasn't getting anywhere with her. It was so completely frustrating! I have to work with two separate departments (cancer, and endocrinology), I am his caretaker, I know my child, and I know what I witnessed that morning...it was awful for him to experience this, and I want to make sure that it doesn't happen again. And I felt that I had zero support from the medical staff there.

We ended up being transferred over to the hospital for a blood transfusion about 4:30pm, and it was close to 7pm before the blood came and the transfusion was actually started. I was close to a breakdown. I had planned on a 2 hour trip to the clinic for what was supposed to be just an IV chemo treatment. The 2 chemo drugs take about 45 minutes to infuse, so accounting for the usual wait time for the chemo to come up from the pharmacy, I expected a 2 hour trip, tops. I expressed some dissatisfaction to the nurse navigator, and talked to her about how unprofessional the social worker had been, how ineffective the process for coming in to get chemo seemed to be, that I felt second-guessed by the doctor, that the nurse from endocrinology wouldn't listen, and how I do have another child at home to consider. It was overwhelming.

The assistant VP of the hospital came down to talk to me while we were waiting for his blood transfusion. She asked, and I told her the events leading up to my complete frustration. I want to help them, and see improvements they could make that would help families like us that are having to go through this process. I let her listen to the voice mail that the social work left on my phone concerning her "14 days", and she apologized for the social worker's unprofessionalism. I suggested that for patients like BJ, whose chemo is not blood count dependent, that the chemo is ordered from the pharmacy upon arrival into the clinic. There should be no waiting to order the chemo. It already takes a while for them to mix it and get it up to the clinic. This change in process would be a huge improvement for patients like BJ. The AVP told me that she wanted to share with me (because of my QI background), that they are working on improving their processes, She would like for me to participate in focus groups that will be created to help them improve. I told her I would be glad to, but right now was not a good time for me, that my focus needs to be on other things right now. It did make me feel better that they are working on improvements and that she took the time to listen to my concerns.

It ended up that we were at the hospital for 11 1/2 hours...finally got discharged at 10pm. It was an incredibly exhausting day for both of us.


Saturday, September 22, 2012

Leukemia????

September 13th started like any other Thursday. I got the kids on the bus to school and I went to work. About 15 minutes after I got into work, my phone rang. It was Dr. Schrader from Lakeside Family Physicians. She said that my instincts were right, and BJ was VERY anemic. His hemoglobin was 5.8. It's supposed to be between 12 and 16. She told me I needed to take him in to the Emergency Department for testing. Trying to subdue my growing panic, I went down the hall to find my boss, and tell him I needed to leave. Instead, I found a friend and she said she would go tell him. I left and called BJ's school to have him pulled out of class and have him in the office when I arrived. BJ asked a lot of questions, and I just told him he was anemic, and we needed to find out why. He was nervous and so was I. When I took him to the doctor the previous afternoon, I figured we would find out that he was anemic, but that they would suggest adding an iron supplement to his diet or something. I never thought that we'd be going to the ED.

On the way down to Charlotte, we had to stop at every light. We even commented on it. Then when we were close to I-85, I heard a noise that sounded like we had ran over a plastic bag....about a half mile later, I realized that my tire had gone flat. I pulled the car over, unbelieving this set of circumstances. I have never had a flat tire. In fact, about a month ago, I had commented that I would like to find my spare, and the jack in the car, so that if I ever needed to, I'd know how to change my tire. I never made time for that.... Now I wished I had. I pulled out my AAA card, and called for roadside service. A short while later, a pick up truck pulled in behind me. I was very nervous about that, but it ended up being a very nice man who worked for Habitat for Humanity. He found the spare, and put it on, but after lowering the car down, realized that the spare was flat. He took it back off, and took my spare to his warehouse, pumped it up, brought it back and put it on. He wouldn't take the money I offered. I thanked him, and we headed on to the ED.

We were in the room at Levine Children's hospital, and Dr. Weekes came in to talk to us. They had already put an IV in BJ's arm, and drew blood for labs. I told him the background story....trouble with the exercise part of football practice, not getting better...but getting worse, thinking anemia, being told that his hemoglobin was 5.8 and coming there. A while later, he brought in a sonogram machine. He said he wanted to see how BJ's heart was beating. He said it looked fine, and then put the wand down on his upper left quadrant...and said...Well, that's not what I wanted to see. His spleen is enlarged. He looked at me in concern, and I said...well what causes that??! He said well there's several things...Leukemia....that's all I remember him saying. I couldn't hold back the tears forming in my eyes. I tried to hide that from BJ, and did pretty well, because he was watching something on TV. Dr. Weekes just looked at me.

A while later, another doctor walked into the room, and I noticed his name badge was from the Pediatric Hematology and Oncology department. He wanted to speak with me outside the room. My heart sank and pounded, and I knew this was bad. I told BJ that I would be right back. We walked through the ED, and into a conference room. The doctor sat down across from me, and said "I am 99% sure that BJ has leukemia."

99% sure my 11 year old, healthy son has Leukemia.....  The words still ring in my ears. What do you mean he has leukemia? He's always been healthy...how can this happen? We don't know what causes it. We're going to admit him into a room upstairs and immediately give him a blood transfusion to get his levels back up. I'm still reeling from "Leukemia"... How?

I snapped back and wanted to get back to BJ. The doctor said he wanted to examine him when we got back, so I waited in the hallway. I'm fighting back the meltdown that is waiting for me, knowing that I have to have to be strong for BJ. He'll know I've been crying, and it will upset him more. He can't stand it when I cry. I dried it up as much as I could and went into his room. He asked me what was wrong. I didn't tell him what I had just been told. I mean, he didn't say he was 100% sure...there was still that 1% chance that my boy didn't have cancer.  Cancer. What a horrible, dreaded, ugly word. I won't let myself think about this that way. It's Leukemia...Leukemia...not cancer.