Yesterday was a LONG clinic day! And it was the most nerve racking. What was suppose to be a "simple" day of a push of methotrexate, has me on edge and just reminded me, or rather, catapulted me back to our life of reality. Our affiliate is going to all electronic records, and yesterday was day 2. So everything that comes along with that seemed to happen and we were at clinic forever. I'm excited they are going to electronic records because now Memphis gets up to date records on Lucy ASAP, but I felt for all the nurses who were trying to maneuver around the newness, the issues, the password lock outs, etc.
After Lucy was accessed, we waited longer than normal for her blood counts. I finally asked when she was going to get her chemo and was told they had emailed Dr Pui and were waiting to hear back from him. Of course, I didn't know why they had emailed him or what was wrong, so I immediately panicked and actually almost started crying. My heart was racing, and to be frank I was scared shitless. I didn't have her counts yet so that made the situation worse. Finally, I got my answer. Her ANC ( blood count that tells how her body can fight colds and infections)had plummeted from 2800 the week before to 620. And we were only on 1/2 dose chemo all week so I couldn't figure out why it had dropped. We also noticed she was sleeping a lot more this past week than normal. Relapse is always something in the back of my mind, so of course I was totally freaking out. Plus next week starts our reinduction 2 and if her counts aren't above 500 they will delay it. And at this stage, we want nothing o be delayed. And it's not "normal" for Lucy's counts to drop just by chemo itself. Plus we were also expecting to do reinduction at home but this may buy us a few weeks in Memphis if her counts don't go up. Which sucks obviously because again, our family has to be separated for a while and numerous trips to Memphis for visiting will have to be made. It's like just as we were settling in to our new normal and getting comfortable, bam! Reality hits us upside the head to say "hey!! Your daughter has cancer!!"
Dr Pui finally emailed back and said he wanted Lucy to go ahead and get a full dose of chemo and stay on a full dose all week and return to Memphis the following week. So we are happy to be on a full dose because we don't want one cancer cell to get by. But we aren't sure if she will be getting reinduction next week because a full dose chemo is likely to crash her numbers more. I asked why this happens or how it could happen. And was told she could be fighting a virus or sometimes their little body's just get worn out by chemo and this happens. Her WBC is down and her platelets are up, so that is one good thing. With leukemia the WBC are usually super high and platelets low when it strikes. Man what I would give to NOT have had to learn all of these things.
There was an article published recently that parents of cancer children suffer post traumatic stress disorder. The research stated that like military sent to war, parents have the same symptoms and suffer from
The disease for a very long time. And when I read it, I was thinking "no shit". Zach likened it to a war zone without a doubt. The Ronald McDonald house and st Jude are like war zones, but instead of men and women dying, children are dying all around you. The enemy is cancer, and the weapons are chemo and doctors. And like many war heroes who come home and live their nightmares over and over, parents are constantly worried about the return of the enemy. Even years after a child is done with treatment. It is ALWAYS in the back of our mind and it is the scariest feeling I have ever had my entire life. It makes my stomach turn, it gives me a headache and makes me physically ill. Even with a positive attitude, it lingers. And yesterday wasn't just the clinic visit that had me on edge, Lucy also asked me "if I get cancer again, I'm going to die, right?" I stood there frozen with fear on how to answer this question. I don't want to lie because we don't know what would happen if the leukemia came back. But in another sense, I truly believe she is going to be fine. And I dont want to surround her with any negative energy or any type of worry while she is fighting her fight. I asked her where she heard this, and she said Jack told her while they were swinging one day. Ok so that made it worse! Now I'm realizing my son is worrying about this! I Then asked Lucy if she knew what "die" meant, to which her reply was "no". So Zach and I talked with both kids about this. We tried to explain to jack that the likelihood of her cancer coming back is like when we do coin tosses and try to guess what it will land on. we said he could throw that coin up 100 times and 99 times his guess will be right, and one time it will be wrong. So for him to think of the likelihood of her cancer returning to That one that is wrong. He understood that. we also asked him where he got that idea? He said when a boy's mom at school died it was because her cancer came back. So we had to explain that some people have cancer come back many times and don't die. And then when asked if he thought of this often and if he was scared, he said "well, yes". So that broke my heart. He has never expressed this fear to me before and I've tried to talk to him about things before. He also has a better idea of what death is. We are not religious people, so for us to explain death is a little harder. Zach and I even have two very different schools of thought on this one, which makes it more interesting. We tried to simplify it for him by saying when a person dies, they don't ever come back. Some people believe you go to heaven, and others believe you go to a place where your heart lives, but not your body. I wish I could have had this conversation with him about a family pet or something and not so close to home. So on top of a long clinic day where it exasperated our fears, we had to come home and answer the hard questions for our children that really nobody has any answers to.
Boy, yesterday sure was a long day.
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