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.

Easter in October

"I have to admit it's getting better....." -The Beatles


We spent the weekend at my family's annual condo in the mountains trip. Amanda has been beyond excited. She even told me she'd be brave and sleep through the night there, but not at home, which she's lived up to. She had a long list of everything she planned to do with her cousins. Mission accomplished! Her most important task was the Easter egg hunt. My mom has one each spring and it was canceled several times because of Amanda's health. Don't promise Amanda anything that you don't plan to deliver because she has a very sharp memory and is very persistent at getting what was promised to her! She reminded grandma all summer about the hunt, and waiting for next year was not an option. She is finally healthy enough to be around more people, so we planned it for this weekend. It didn't take long to find all the eggs. I don't think she's even touched the candy inside. Having fun was far more important. Needless to say, she had a great weekend. She was sad to leave. I reminded her that we'll be back next year. She said, "But that's three months away!"













These eggs cashed out!

We have been surprised at what a good baby Will is. We are not used to a happy baby that you can pack around with little fuss. He's up to 7 lbs. 4 oz - at two months he's still smaller than the girls birth weight. But he's plumping up quickly. He's finally learned how to nurse (yeah!!!) which is great because the doctor's don't want him on formula. We are still waiting for genetic tests specific to blood disorders. He had another ultrasound last week and his blood clot is getting smaller. We'll follow-up in three months with the hope that it will be gone on it's own. The doctor said blood thinners will not help at this point. He finished up his "liver in a bottle" medicine and he goes to see the GI doctor next week with the hope that his liver is functioning properly. Overall, he's doing great. He looks and acts like a baby his age should. He's proving to be a delightful addition to the family. And he settles the debate - boys are EASIER than girls!!!!!

I'm living with a bunch of insomniacs!!!

I have to thank my husband and parents for helping out so much while I was busy bonding with the bathroom. Isolating myself at my parents was like a hotel stay with room service and everything. I wish I'd felt well enough to fully enjoy it. My dad made sure to double check that I hadn't separated from my husband with plans to move in. I think the effort has paid off as nobody else has gotten sick.

Being among the living again has reminded me how it was that I got so sick in the first place - a whole lot of stress and sleep deprivation. Will gets me up, but Amanda and Erin keep me up. Erin has never slept well and I'm used to her night tantrums. But Amanda has developed horrible insomnia ever since her last steroid treatment several weeks ago. She is scared of being alone. Granted, I feel for her and all she's been through, but we can't take much more of it. So Amanda and I spent over an hour talking with the oncology psychologist last week. The diagnosis is that she's "socially starved." She's not socializing enough and he wants her back in school asap, but her counts are still too low. So, it's a lot of tough love for now. She was up for over three hours the other night trying all her tricks to get somebody to stay in the room with her. As the psychologist put is, "kids are like slot machines. As soon as they know when it will pay out, they keep pulling the handle to get there." Although she is driving me batty with her attempts, she is at least feeling really good right now. The second half of her intense treatment was surprisingly manageable. She was really ornery and lethargic last week. She ended up needing a double blood transfusion. I mentally thanked whoever donated her blood. I wish they could see her bounce back to life. She's done really well since then, but her immune system continues to be dangerously low. She is officially done with her six months of intensive treatment and is now in "count recovery" mode. We'll go back the first part of November to begin her two year maintenance phase. We are hoping to have her transition back to school after that. The bad flu season is painful timing. But taking our chances will likely be the trade-off for a good night's sleep for everybody.



At least somebody's sleeping around here.

“You tried your best and failed miserably. The lesson is: never try.”

Sometimes in life it is unfortunate that you can try your best and still your best isn't good enough. It is a hard pill to swallow. We've tried very hard to all stay healthy while Amanda is going through chemo and has some of the lowest counts she's ever had. We have to be very careful during this phase as we've tried throughout the entire treatment. We sanitize everything, sometimes more than once. We don't go anywhere we don't have to and we stay away from crowds. There are few people invited over to the house and there are many restrictions about their health and who they have been around. There is a lot of flu stuff out there and we don't want any. We try and we try, but Mary Ann has found herself banned from the house yesterday.

As hard as she's tried, and she's more careful than all of us, she came down with something nasty yesterday morning. She has been so sleep deprived lately that it is no wonder. She was throwing up through the morning yesterday so she locked herself in her room until she felt well enough to pack her and Will up and take her to her parents' house. It is very hard for me, Erin, and Amanda to have Mary Ann and Will out of the house. They are handling it very well.

I am often amazed at how well both Amanda and Erin understand these things when it comes to not being able to risk getting sick. Today I took the day off and took the girls out for lunch to get them out of the house. We went to a park for a little while and had to steer clear of all other kids and only stay for a little while. The girls have been so cooped up that they need to get some air and play outside when they can. I must have gone through half a bottle of hand sanitizer following them around squirting them every 5 minutes.

After the park I talked the girls into taking a small nature walk. And I do mean small. I'm feeling very cooped up as well as it seems the only place I go is to work and back home. It felt good to get out and walk, however, you can only go as far and fast as a 3 year old will allow you. I wanted to get out and hike through the wooded area above Kaysville but soon realized that where I can tromp through the girls could not. It was a very nice warm day and I had more energy to get out than the girls. We ended just walking a little ways down a trail and the girls were collecting rocks down the path.

We are getting close to the maintenance phase of Amanda's chemo and having her get back to school and more normalcy. We have to be very careful over the next few weeks that we don't have any setbacks. Hopefully it won't be too long of a separation from Mary Ann and Will and she just has a quick bug that the rest of us can stay away from.

For those of you Simpson's fans out there, you'll recognize the quote. It is how we feel sometimes.

Never try sound bite  Homer Simpson sound bites

HUMILITY

When Amanda was diagnosed with cancer I hoped to find another girl her age for her to meet that was going through cancer too. I knew it would help her not feel so alone. Over the past five months I've looked for that friend at clinic, but have not found her as most cancer kids are young boys and older girls. This weekend there was an obituary for a girl her age that died of liver cancer. It broke my heart. How hard it would be to go through this only to lose your child at the end. I know that Amanda's prognosis is good and we know she will survive. This was a gentle reminder for me that she is meant to be here. It has been humbling for me to recognize that it is in God's hands and that we have not one, but two children spared this year. Five months ago Will's heart was so large it took up half his chest cavity, he was supposed to have suffocated from lack of amniotic fluid, and most of his organs were under stress. How grateful I am that God still lets me hug my kids at the end of the day. Humility is hard to explain, but you recognize it when it is granted upon you.

Amanda continues with her intensive treatment. Yesterday was a long treatment day with the most medications she's had at one time. Both Scott and I thought she'd have to be carried out of the car. To our surprise she's happy, talkative, and acting like herself. She had the different medication with her lumbar puncture. We both believe she is responding much better to this medication than the last. How I wish we would have discovered this sooner. It's sad to think that her treatment was more difficult than needed, but we can't change that. I'm just grateful that she looks so good today and hope that this med continues to be better.