Saturday, May 9, 2009

First day of outpatient

We had our first day of outpatient services yesterday. We know many people are wondering how it went. In taking care of Amanda, Scott and I are pretty run down. The adrenaline finally wore off. After several days of not taking very good care of myself Scott had to remind me that I'm still on a PICC line with IV's and that it was time to just rest and rehydrate. I must have looked pretty bad. After some much needed rest and IV time, I can devote some time to this. So if we are ever behind on updates, know we are just recovering and that things are not necessarily bad.

Amanda dreaded Friday. I think that Thursday evening was likely worse than Friday. Her anxiety was intense. It is always at its highest when we have to approach something new. I keep reverting back to my child psychology training to try and pull out all the tricks, but she would challenge even the most experienced clinician. They have already labeled her as "very anxious and fearful" in her file and have therapists working with her before every new procedure. We just give her the time to talk about what she's scared about, teach her to pray, and help her find activities to keep her mind busy (Thank you Scott for enjoying video games with her!!!). It is working and instead of waking up scared, she woke up hungry. "I want a waffle!!!!!" But it was an RTU day (which means they put her to sleep for some of her procedures) and she couldn't eat. She sulked on her bed and said, "That hospital sure doesn't care about kids like they say they do. They let us poor sick kids not eat. That's not caring!!" Corn dogs and waffles were the craving of the day and I think we heard these words over a 100 times yesterday. She was VERY happy to eat again and made excessive MMMM noises, but that didn't happen until 2:00. I'm not looking forward to future RTU days! She not happy hungry even when she's not on steroids.

As for her anxiety, she had about five minutes of screaming out of fear before they accessed her port, but then she was fine. Overall, she handled it quite well and hopefully next week will go smoother now that she knows what to expect. The port is a small rubber disk surgically implanted in her chest that has an IV line to her heart. This is how she receives her "chemo" medication at the clinic. It is numbed before treatment and a small IV needle is stuck in. This way she doesn't have an IV hanging out of her chest for the next two years, which allows her to look normal and go swimming in the future. She hardly noticed them inserting it and the Chemo (for now) takes less than five minutes. The time down there is largely contributed to health updates and waiting for lab results on her blood work.

The RTU clinic is where she is sedated and bone marrow samples are taken. This will happen occasionally throughout her treatment to determine how well the chemo is working. She also had to have a lumbar puncture. Although she does not have the leukemia in her spinal fluid, they have to prevent it from going there. So she has a chemo drug injected into her spine while she is sedated. This procedure it proving to be the most challenging of her treatments so far and yesterday was a new drug for her (our last new one this month). I get nervous with each new one because I don't know how she will react. This Lumbar puncture (LB) was better than the last as the medication seemed less harsh. But the recovery is a good 24 hours of looking and acting like you would expect a cancer patient to look and act. It triggered a good headache, a lot of back pain, she looked sick, and she slept a lot. But I'm happy to report that today she is quite active and talkative. She is in no way acting like her hyperactive self, but she is happy and starting to play with toys again. And the craving for today is crepes with strawberries. The food cravings are becoming a reassuring way of knowing that she is doing OK, as humorous as they are becoming.

We will have treatment every Friday for this month. RTU days are varied and contingent on her lab results. Her blood work shows that her ability to fight infections is dropping quickly, as expected. We plan to lock down into full germaphobia mode in a week or two. We're starting to modify our lives to accommodate this. I officially requested to home school her and plan to turn our semi finished family room into a temporary school room. Never would I ever imagined myself home schooling! I have a lot of researching to do about this and could use any advise from home schooler's. Aside from us all being quite tired physically and emotionally, we are holding up and adjusting to our quickly adjusting lifestyle.


  1. Mary Ann,

    One of the best advice I can give you is, do not try to do "school at home". Homeschooling is very different and you do have to find your own way, what works for you. All the ex-homeschoolers I talked to tried too hard to copy the Public Schools and they admitted later that it just caused stress and they felt that is why they quit. You do not need a schoolroom. We work at the kitchen table, the couch, in the kids room etc. Homeschooling is more like tutoring and spending time with your child, learning together. I think that is the key, learning together. YOu will not spend as much time on each subject as PS does, so do not be suprised if math only takes 15 minutes. Do not try to mkae it go for 45 minutes, if Amanda is done, there is no reason to. Textbooks do not work as well in HS, since textbooks are written for a classroom. (There are textbooks written for HS-ers by the way) There are a tons of different methods, different ways to approach HS-ing and like I said, you have to find by trial and error what works for your family. That means you have to be patient and flexible. Find Amanda's learning style, and build your materials around that. A book, that I think is a must, is Rebecca Rupp's Homelearning Year by Year, it will help you know what is expected of children in each grade level for each subject and it does give you ideas, books etc. It is very detailed in outlining what is expected for each subject. But most of all, remember to have fun! Learning does not have to involve workbooks, math problems can be solved while jumping, you do not need pencil and paper. Read a lot together, on the same subject from various resources, so you get a fuller, more complex knowledge of the subject. Talk and discuss what you learned about. On my blog you can see a few resources I use. Look them up, research it. But for now, since school is almost out, you do not need to worry so much about materials. You could ask Amanda's teachers to give you heads up on what they are finishing off, and work on that. I am not sure how long you are planning on HS-ing, but if it is only going to be months, maybe a year, you could look into cyber schools, or a packaged curriculum, where you get everything in a box. It is not individualized, but it would work as a temporary solution. I heard Weaver is good, or Sonlight. Good luck, if you need anything else let me know. Also, you may want to join a support group in your area, even if you cannot go on outings with them, it would be nice to have people to talk to, to answer your questions. Even a cyber support group helps. Yahoo groups will have a ton of options. There are LDS HS support groups too. Good luck, we keep Amanda and you guys in our prayers.

  2. Hi Mar!
    I wanted to wish you a Happy Mother's Day! I bestow upon you the honorary title of Mother of the Year. I am glad to hear all the posititive news about Amanda--especially the fun food cravings. I got hungry just reading your report! Give her a big, wet Oregon hug from us.
    Love ya!