Tuesday, July 28, 2009

Making Counts

We're continuing to learn all kinds of slang medical lingo. Making counts means that Amanda's blood counts (WBC, ANC, HCT, Platlets - more lingo) have to be at a certain number to move forward with more chemo. Her ANC, immune system, was too low yesterday and she didn't make counts. In fact, it is 0.3, the lowest she's ever been. She has virtually no immune system right now which makes me quite nervous. We go back to clinic Thursday. If her counts don't go high enough she will only have the Vincristine medication and the dosing on the other med gets all shifted around. It is all so complex. I continue to be so amazed by the smallest details of cancer management that somebody has learned through trial and error. The unfortunate thing is that this completely throws off our schedule for when the baby will be induced. I asked the nurse if we can count on any schedule for next month. She laughed and said that we chose the worst possible phase of treatment to have any predictability. This doesn't describe chemo treatment as much as my life right now!

The great thing about additional time between treatment means that Amanda feels better, gets stronger, eats more, runs around more, and is building up her strength. It also means less stress for her. I've noticed a real change in her maturity level over the past few weeks. I think she has largely accepted what she must deal with and is coping with it as best she can. She's not as sad about what she cannot do and is trying to find more creative ways to be happy and entertain herself. We are now three months into this. We are never fully prepared for the hard days and they are always a big setback. But overall, I think we are all adjusting and finding ways to make our lives meaningful right now.

Friday, July 24, 2009


Amanda is stable right now. She's pale, weak, and looks like a cancer patient should. She spends most her time doing sedentary activities. There are still many highs and lows all throughout the day, both emotionally and physically. I have found that talking about the baby keeps us both focused and upbeat. She is very excited about him coming and I know she wants people to be excited about him too. For those interested, here's an update.

Two months ago a funeral looked more probable than a homecoming. I think many prayers have benefited him, but I am still cautiously optimistic about every baby item I organize and acquire. With each one of my specialist appointments I am reminded that his progress has not been normal nor expected. We don't have a clean bill of health yet. He's still a month behind on his growth, but is growing at his own steady pace. His heart is still slightly enlarged, but his cardiologist thinks it is not a problem. It is just "working harder than normal" for some unknown reason. She thinks it's pregnancy related and will get better when he's born. He is missing one artery in his umbilical cord, which may or may not be contributing to the heart condition. We may never know what caused all his problems, or what has caused them to resolve. It's still a high risk pregnancy which means a lot of non-stress tests, doctor's appointments, and many ultra-sounds (nestled between chemo treatments, home health - welcome to our crazy medical lifestyle!!). He needs to come out as soon as he's full term. We have Aug 20th scheduled as the day to come, but will adjust it around Amanda's chemo treatments. My doctor's have been so supportive of her and our situation. This is the plan unless her treatment schedule changes, he goes into distress, or his growth slows down. I think we can make it - just one day at a time right now! We are entering a lot of scary unknowns, but I have known two things for a while.

1. He will come when Amanda is well enough for me to be away from her.
2. One of the reason's he's coming is to help Amanda.

Tuesday, July 21, 2009

Bouncing Back

Two things are notable about this picture. First, after four days of being quite ill, Amanda finally felt well enough to leave the house. I don't anticipate her getting out as much in the next two months due to the medication side effects, so seeing her go for a short walk is uplifting. I hate starting new treatment rounds because it seems like quite a random process of waiting and seeing which unpleasantness you will get struck with. When they give you the cancer treatment handout it lists all the medications and all the potential side-effects. Various medications range from just a few side effects to upwards of 20. I don't' understand why she has hardly any side-effects to Vincristine, but seems to be racking up some bad ones for Methotrexate. So it goes. Fortunately, the intense nausea/vomiting, and pain has subsided. It lasted a solid 48 hours. Right now she has no appetite, excessive thirst, her eyes are starting to swell up and water, and she doesn't have a lot of energy. These are manageable. Unfortunately she is the princess and the pea kind of kid and makes mountains out of molehills when it comes to anything out of the ordinary with her body. She still puts a band aid on everything that's uncomfortable. This personality trait doesn't help much. But it is a relief to see that the intense side effects have the potential to slow down and give her somewhat of a break between treatments. It gives me a chance to catch up on my sanity.

The second thing that is unusual about this picture is that Erin and Amanda are calmly sitting this close together. We even caught them resting their heads on each other. Erin has had so many behavior and sleep problems, from food allergies and what's thought to be a neuro-processing disorder, that it has been difficult for Amanda to tolerate her. As her early intervention team put it, "Erin's too smart and wants to take over the world." Combine that with another head strong child and you are in for some problems. Over the past few weeks they have accepted the loss of interacting with others and are getting along better than ever. I know it's just by default, but it's been good for them to learn to like each other again. There are still hard moments between the two of them, but overall they seem happy to have each other.

Saturday, July 18, 2009

Breaking Down

I think it's getting harder to keep my sanity through all this. The irony is that Amanda had her best week yet. That's what makes it so hard. I get a taste of normalcy, which I long for, only to be thrown back into watching my kid suffer. It seems almost cruel. Yesterday's chemo proved to be brutal on her. She came home so sick and miserable. She had severe pain in her hips and legs all day and night long. It's the type of pain that nothing but heavy, addictive pain drugs control. I suspect it's bone marrow depletion, but I'll have to ask the doctor because it's not a typical side-effect that I expected. We struggled for hours to get on top of the pain because the only pain medication she can take causes nausea/vomiting. This is also the side effect of the current chemo she is on. The anti-nausea medication doesn't seem to stand much of a chance with both of these drugs. After hours of whimpering in pain, she finally threw up. I physically held her up in the hallway while she was vomiting, only to abandon her myself to gag over the same bowl. I felt awful as a mother. I'm getting very tired of cancer and hyperemesis gravadium. I unfortunately had my PICC line pulled this week due to complications from it. I'm struggling with fluid intake, which makes me more nauseated. Yesterday was unfortunately a bad nausea day for both of us. Some days being sick together comforts her. But most of them are overwhelming for me. Earlier this week I told Amanda that I was getting my PICC line out, she sobbed and said that now she's the only one that is different. It was so sad to see her reaction. She also asked me how long she will have treatments. I have been dreading this question. I was honest and said that it would be the end of 2011. She sobbed again. Despite these setbacks, she is learning to be more resilient. I think she's doing better with resiliency than I am. As of right now she's feeling better and happily acting more like herself. She doesn't complain about yesterday and seems determined to enjoy the day despite whatever setbacks she had this week. Fortunately, this is what keeps me going. Every day is new. I have to remind myself to not let yesterday's despair dictate new days that have the potential to improve my hope. The only exception to this is that we are planning to buy a minivan this week. No amount of encouragement or counseling is going to make the dreaded minivan a welcome part of my existence :)

Tuesday, July 14, 2009

Standard Interim Maintenance

My pregnancy has taken my attention away from blogging recently. I will be induced in about 4-5 weeks which has triggered frantic nesting, contracting, and not feeling the best from running on empty. Fortunately Amanda is doing well enough that I have the chance to focus on other things. She started standard interim maintenance therapy without any problems. So far she is having fewer than normal side effects, but this will change as the month goes on. Her bowel and eating habits are changing. She told me the other day that she "HATES pickles." It made me laugh compared to our earlier drama about not having enough pickles. Now it's cereal and chicken legs. At least she can eat. The objective of this round of treatment is to get her blood counts as low as possible, but to keep her healthy. This ensures that the leukemia cells are destroyed. So far this round of treatment feels like a bit of a break compared to the others. I really think she's doing better because of fewer lumbar punctures. Physically she is making a lot of progress. She's participating in more activities rather than just vegging on the couch. And she's returning back to her normal chatter box self, asking all kinds of inquisitive questions. She is still struggling emotionally coping with all of this. The tantrums and mood swings were getting more and more frequent, and we can't blame it on steroids this time. Scott and I decided it was time to take the risk and let her play with somebody again. Her doctor has made it clear that she needs to just be a kid to get through this. She played with two cousins this past week. Watching her play and laugh was so encouraging. As you can see below, this smile was not faked. We took the picture after I told her when she'd see her cousins again.

Amanda is also smiling out of excitement for the new hat. We have to send a thank you to Kristen for it. Amanda has enjoyed putting various flowers on it. Kristen has gone through cancer three times. You have to check out her blog and some of the links they have to other people going through tremendous things. http://sheisourangel.blogspot.com When I think of somebody going through leukemia three times it makes it easier to think that we can handle once!

Tuesday, July 7, 2009


"Tis a gift to be simple, Tis a gift to be free....."

Amanda celebrated a week free from viral infections - what a gift! As for simplicity, she is making progress towards accepting the changes in her life. She told me that she didn't think we'd go to the parade on the fourth of July because of the crowds. She understood and was not disappointed. There is room for a lot more adjusting, but I'll take one small gift at a time. We did find a remote place to watch fireworks and managed to go "swimming" in grandma's hot tub (I'll spare Scott some dignity and not post pictures of him in a bathing suit, even though I think he looks just fine). No big parties, parades, or social gatherings. But, we are finding many ways to simplify our life and find moments of happiness. It is what is getting us through this.

Amanda is doing so much better physically and mentally. She has been feeling well enough to start up on some home schooling work, she's been going for walks around the block, and she's even tolerating Erin better. We still have rough moments every day. She has regressed a lot emotionally, and her anxiety level is still extremely high about, well, everything. But she seems happier, and that really is what matters most.

Tomorrow starts round three of five of her chemotherapy treatment. She will be off oral chemo drugs for about six weeks. This will be replaced by IV chemotherapy every ten days at clinic. One of the drugs she has had several times already, and she tolerates it well. The other drug has been used during her lumbar punctures, but typically causes mouth sores when done through the IV. We'll just have to wait and see how she does. And whatever hair she has left should be wiped out by the end of the month. Fortunately, she has only mentioned missing her hair once. Her immune system is very low right now, so we have to continue to cautiously go about our newly simplified life.

Wednesday, July 1, 2009

It's all fun and games until.....

Yesterday was Scott's birthday. I talked it up with the girls like it was a trip to Disneyland. They were so excited and spent most the day decorating, making the cake, and designing gifts and cards, etc. One of the nice things about keeping the girls in a bubble is that everything has become a lot more simple in our house. They get excited over small things now. It was so nice to see Amanda laughing, playing, and getting excited. She seems to be over her viral bug. It fortunately was a short one and she is getting back to herself again. She also had her port de-accessed by her "favorite" nurse before the party. She gets so nervous to have it done even though it's becoming quite routine. But with total irony, it was all fun and games until she fell off the kitchen bench and banged up her knee pretty badly as soon as Scott came home. She couldn't walk for a while and was limping most the night. Poor thing, it's two steps forward, one step back with everything she does right now. But, most the day was very happy and fun for her. It hasn't been that way for a long time. It must have been some party because she's been asleep for 13 hours now. Who would have thought that eating cake and opening presents was so much work?

Here are some pictures of Amanda starting to feel better.

1. Girls making Dad's birthday cake. Wow, they are actually cooperating.
2. Getting some fresh air on the backyard swing in her new favorite hat.
3. The Nef version of camping - cooking smores on your backyard BBQ
and sleeping in your own bed that night!