Big sigh of relief

Phew. We're done with last night's methotrexate dosing and Amanda actually did great - no headache or vomiting. I'm pleasantly surprised and hope that it stays that way. She's feeling great today and didn't wake up at all in the night (wish I could say the same for the other two). We may just get through this maintenance phase after all. My brain is a bit scattered lately, so I've got to jot down the RX recipe to remember for next week.

4:00 - start with lots of fluids

5:30 pm: 6-mp medication and Prevacid on empty stomach

6:00 pm: consumption of waffles or other bland food item (shouldn't be hard with my cooking lately)

8:00 pm: one Benadryl and one Zofran

8:30 pm: full dose (don't skimp) of Oxycodone and a small bowl of cereal.

9:30 pm: 8 Methotrexate pills

9:45 pm: listen to Amanda talk non-stop (narcotics bring out the social side to her)

10:00 pm: a good night's sleep for her - hopefully!

We'll see if that works again next week.

Giving and Receiving

Our ward dropped off a pumpkin pie this week. I had to chuckle because last year I was relief society president and sat on the committee that decided who got the pies. Life can change rather quickly. I was grateful to be on the receiving end. Amanda had been begging me to make a pumpkin pie all week and I've been very preoccupied with setting up my upcoming business venture. Baking pies is low on the priority list right now. I am grateful for those that think of us, pray for us, and go out of their way to support us.

I'm typing this to relieve some anxiety. Amanda will take her Methotrexate within the hour. She takes it each Friday night. Last week was awful. She cried, vomited, and whimpered in her sleep until the dose wore off. Days like this I hate cancer. The worry and dread is almost as bad as dealing with side-effects. We'll try regulating some medications to knock her out so she doesn't notice. For the first time she is apprehensive about taking pills because of how they make her feel. I hope we can help her to be more comfortable or it's going to be a very long two years. But I'm coming to accept that cancer is full of a lot of uncomfortable things that you just have to toughen up and get used to.

Transitions

A few years ago I worked with foster children, specifically between the transition of an abusive home to a foster home. Almost consistently among abused children there is a phenomenon. They get into a safe "normal" place, and yet they try to disrupt everything that is safe and normal about it. Lately I feel a strange sense of understanding this. I took the kids on some errands today. Something that we all do regularly and think nothing of it, right? It felt very strange. I haven't done it for almost a year. I've either been too ill to go or have needed a babysitter. I felt like we belonged back at home, the hospital, among medical equipment, just somewhere other than normal society. Although I have no desire for Amanda to have to go back through the tough first six months of treatment, I still have this feeling that it is where we are supposed to belong. I've spent the last six months focused on the intense phase of leukemia and the daily task of asking myself and God, "how do I get through this?" I could not see past November. Every minute counts so heavily during cancer. Now that we are here I find myself happier, but feeling very out of place. It's a peculiar transition. Now that we know cancer, we can never overlook it. I constantly think of those recently diagnosed or in the toughest parts of their treatments. My heart aches for them because I now know what it is like. Every time we go to Primary's I look at the windows of the oncology unit and wonder who is in our room, who is fighting the fight, who is miserable. I often hear parents of cancer survivors say, "she never complained." I can say, "boy did she ever complain! But, she easily forgot and moved on." I suppose I need to start following Amanda's example.
She will transition back to school on December 1st. She is starting to act more and more like herself again. Falling asleep without drama is still an issue, but that will just take time. She is going to emerge from this a stronger person both physically and emotionally. I can finally see it. She will go back to "normal" without any hesitation or regrets. I am eager to get there with her.

MAINTENANCE

It's hard to believe, but we are finally here. The beloved maintenance phase of treatment. The best way to describe maintenance is to compare it to a tree. If you cut down a tree, the roots are still there and the tree will grow back, even if you can't see the tree anymore. Leukemia ALL is the same. Every test available would indicate that she is cancer free. Maintenance is a two year, steady course of mostly oral drugs that will kill all the cancer roots. Amanda began the phase on Wednesday. Everybody at clinic was cheering for her. I have to admit, deep down I wasn't. Cheering about two more years of treatment and fearing relapse for years to come doesn't seem like anything to get excited about. What there is to cheer is that her treatments are fewer and less intense. She began the course with a lumbar puncture and Ara-C instead of Methotrexate. They are going to try it for a while, but she eventually needs to go back on the medication treatment course. She was still pretty miserable for a good 24 hours and hooked up to an IV pump for a few days, but she does better on the Ara-C. We are hoping that she will tolerate the medication better when her LP's are spaced apart more. They will be every three months now. yeah!

Her hair is starting to come back in. It looks blonder than normal. Cancer treatment can permanently change the color and texture of hair, so we'll see what we get. It should not fall out anymore. She is sleeping better at night thanks to a good psychologist and some occasional benadryl. She's on steroids again. It's maddening - 5 days every month. It's going to be rough because steroids make her sooooooo MOODY!!! She is close to returning to school. We have to wait and make sure that her counts don't drop too much during the first two weeks while they regulate her medication dosing. Her counts have to stay in a therapeutic range - not too low, not too high. We are looking at having her transition back around the first of December. She can't wait! She is getting very lonely again. I want her to be out and about more, but everywhere we turn people are sick. Erin ran a fever yesterday. We cannot avoid it despite our best efforts. Loneliness verses illness - it's going to be a long two year battle!

HAVING FUN AND WORKING HARD

I think our family had the best Halloween ever. Amanda wanted to be a superhero (which I thought was so cute and appropriate), but we couldn't find a costume that fit in time. Being a cat of some kind is always a favorite for her. She skipped around the neighborhood faster than we could keep up and she was surrounded by friends and family. It was so great to have her so happy!!!


Clinic was postponed this week because she didn't make counts - barely. We are all eager to have her return to school, so this is frustrating. But we need her well enough to be able to start her final treatment round. We took advantage of meeting with the psychologist. He thinks she's doing really well despite sleep problems and a whole lot of mood swings. As he put it, she's just "decompressing" from all the changes and is a very dramatic child on top of it. She really has done amazingly well. Getting poked with needles and missing school have been the worst part for her. She complains a lot when she's in pain or sick, but moves on and forgets about it when she feels better. That encourages me that she won't be too traumatized when this is all said and done. In the mean time, she is adjusting to less video game time and more homework time. Her teacher is meeting with her and assigning projects to get her up to speed with the class.

I returned to work this week. If ever there was a time to quit and stay home, it is right now. And yet, if ever there was a time to work, it's right now. I only mention work because I've had a lot of questions about my impending lay-off. I appreciate the concern. I've worked for the State of Utah for 12 years as a social worker, most of which part time in disability services. As of January, DSPD (the division I work for) is privatizing all of it's services. I am actually excited to leave and set up my own company. The struggle is that I carry the health insurance. It's not a great time to transition insurance coverage because we've been told that we have the absolute best coverage for her type of cancer. Fortunately we have other insurance options, it's just not as ideal as what we've been used to and it adds to an already long list of challenges. I am amazed at how well the timing of everything is working out for us. Sometimes so well that I have to remind myself that God gave us these challenges, but he is giving us a way to get through it. I know in a few years this transition will better our lives. Just getting there is the hard part. So if the blogging gets sparse, things are likely just fine. We're just frantically finishing our basement, getting a company put together, and still attending a lot of medical and school appointments.