Still With The Cancer

My daughter still has cancer.

I've gotten a few emails and comments about something I posted on Facebook, that basically said that Mad still has cancer.

It seems that many people are confused about that. She is out of treatment and is doing very well. Her Hickman line has been removed, which often is the marker for the "end of cancer," so I see how it is confusing.

She still has cancerous tumor in her abdomen and maybe a small amount in her spine. The plan that we are currently following is to let the tumor mature on its own without intervening with chemo or radiation. Every month her urine is tested for chemicals that the tumor puts out, VMA and HVA. She was tested last week and the VMA has risen a bit from the last measurement and is now at 28. The HVA has dropped a bit and is now at 48. These numbers don't really mean anything, except that in a child without neuroblastoma, those numbers are much lower. The HVA and VMA aren't the best indicators as to what is going on with the tumor, but helps the doctors see if there is an overall trend. Urine tests coupled with MRIs give them an even better picture as to whether the tumor is still growing, or not. We have been told to expect the VMA and HVA to rise a bit while the tumor is maturing. The tumor is also expected to grow a bit too. We don't know how long it will take to reach maturity, there really isn't a timeline for that sort of thing. Once it is mature it will no longer cause any problems, won't put out chemicals, and will just be a mass inside her body. It will not be surgically removed unless of course it is getting too close to any organs.

I hope that helps to clear things up a bit. Mad's next MRI is scheduled for May 18th. I'm not looking forward to it, or the preceeding clinic visit. It will be the first clinic visit for labs (blood draw), and MRI that she will have had since the removal of the line. As much as I hated it, the line did make labs and anesthesia so easy. And also, we have never gotten a good MRI report. The tumor is always shown a little bigger than it was the last time. Which I guess is what we expect, but still, I always have hope that it will just be the same instead of growing.

Madeleine is doing very well, she's busy with her swim lessons, gym classes, and frequent trips to the neighborhood park. Today I took her for a five mile run in the stroller (which was somewhat difficult because it's hard for her to sit still for that long), and we came across a new dad walking with his week-old baby. It's hard to imagine that she was ever that small.

All things teeth

Last week Mad was having horrible screaming fits at bedtime and it was taking an hour plus every night to get her to go to sleep. After ruling out the worst possibilities I ended up buying a couple of books on sleeping. Before I really got a chance to read them I discovered that she has all four of her first molars coming in. That night I gave her tylenol and her teething medicine and there were no tears. It's amazing to actually find an easy solution to a problem. I'm glad that I got the books though, and we are implementing some of the ideas (earlier bed time, wholesome snack before bed). Also, she is now completely weaned (four days and counting), and we are starting to work on having her sleep the whole night in her own bed. Things are certainly changing around here!

Today we both had a dentist appointment. Even though she is a little young for the dentist her doctors wanted to get her checked out just to make sure that everything was growing in correctly. Chemotherapy can (amongst all of the other damage that it does) cause problems with the teeth. The dentist was able to take a quick look and said that everything looked fine. She also said that her gums look pretty red and swollen where the molars are coming in. I, on the other hand, left the dentist with four cavities and a crown (which I guess was a cavity too). That's what you get for avoiding the dentist for a couple of years!

I've decided to sign up for and run a half-marathon in August. This is something that I've always wanted to do. Now that I'm not going to a million doctor's appointments a week, I actually have the time to go running during the day. I will be following a training plan that I got on the internet, and the training will start the last week of May (which is also the week that we will be on a cruise to Alaska, but the mileage is low that week so I know I can find the time whilst on the ship). I've been running 2-3 miles every couple of days just to get a kind of baseline and get back into running shape before I start training. This blog is not a running blog, but it does make me more accountable for my actions. Being a great believer in The Plan, now that I have written it down, I have to actually do it.

I know that I totally strayed from my topic with that last paragraph, but on my run at the lake last night at sunset, bugs flew into my mouth and teeth. There you have it. The run was beautiful, the having to breath through my shirt, not so much.

Constantly Concerned and Easter

Madeleine had a fever that started on Easter, and (I think) ended today. It wasn't high, and she was mostly herself, just a little crankier. Her line is gone, so we obviously weren't worried about a line infection like we have been in the past. Today at nap time she had a major temper tantrum about nothing at all. She was trying to carry a stack of books to me and they kept slipping out of her hands, and she just lost it. She continued to lose it for the next hour and a half until I was finally able to get her to go to sleep. As I attempted to soothe her I was reminded of the couple weeks before she was diagnosed, when she was so cranky, and we didn't know that anything was wrong. Whenever the tiniest things like these happen I can't help but think that it could be a sign of a bigger problem. Maybe the cancer is spreading, maybe it's putting out a ton of chemicals and that is causing the fever. I don't know if I will ever be able to stop thinking like this. I imagine with time that it will get better, but I'm not certain that it will ever go away.

We had a nice Easter at home. It started off rough with Ryan heading over to work (for the fourteenth day in a row) because his experiment may or may not have caused half a million dollars in damage by blowing up. Luckily, it was saved (the experiment AND my marriage!) and he made up for it with flowers and bon bons and making dinner. Meanwhile Mad and I went for a run at Mission Bay. It was a beautiful day but incredibly windy and it was difficult to push the stroller into the wind. After about three miles she had goosebumps and we gave up. When we got back home I looked up other places to go running in the area and I found a lake about five minutes from my house. Unbelieveably, we have lived in this area of San Diego twice for a total of about two and a half years and we've never seen this lake. Later in the day we went to check it out and it's gorgeous! It's about five miles around and there are geese and fish and good trails that will hopefully accomodate the jogging stroller. I'm looking forward to running it maybe later this week.

We did have a small Easter egg hunt at home:

Classes

Madeleine's first swim lesson was successful. She got right in the water and only cried a couple of times when the instructor took her and she was away from me. She also put her face in the water willingly, but then cried at the result. She kept doing it though, so it must've not been too bad. She has lessons three days a week, but the next one won't be until Tuesday because of the Easter holiday. Normally she would've had a lesson this morning as well. Being in the water with the kids made me miss teaching swim lessons. I truly love being in the water (a heated pool that is, I'm kind of eh about ocean swimming), and I hope that she inherits this from me. Her father, sadly, hates the water.




Gymnastics lessons continue to go well also. In fact, she loves it. Maybe it's going a little too well because recently she discovered that she can hang on the bar in her closet (where the changing table lives).














At Gym class, fascinated by the bubbles.























Playing with the balls is one of the best parts of the class. It's really cute to see all of the little kids toddling as fast as they can to get to the big tub of balls.












Here she's posing, showing off her new and improved line-less chest. Today I threw away all of her leftover medical supplies. I thought about giving them to someone, but there wasn't much that would've been useful. I only had one heparin flush left and the rest were gauze pads and gloves. It felt rather liberating to throw them out, and to see the empty space in her closet that the med box used to occupy.



I'm wondering if it might be time to introduce the beginnings of potty training. Today she told me when her diaper was dirty, and then again a few hours later she pointed at her diaper and said something resembling "pee pee." She then got that far off look in her eyes for fifteen seconds, so I'm thinking that she may have been actually telling me about it right before it happened. It's a hopeful sign at any rate. The nurse practitioner at the neurosurgery office told me that one of the things that they look out for in cases like hers, where there was/is tumor in the spine, is the ability to potty train. I guess that the tumor, or surgeries, or something could have damaged the feeling in that area to the point where she wouldn't know if she had to go or not. Time to buy a potty chair?

Sleeping

Ryan just put Mad to sleep for the third time in her whole life. And it only took half an hour. I'm hopeful that we can start to trade off so that bedtime isn't such a burden (on me). He also put her to sleep successfully on Friday night when I was out to dinner with some girlfriends. I feel like her sleep habits are starting to change. I'm hesitant to write that because I'm sure that as soon as I hit "publish," she'll wake up and not sleep again for the next week, just to prove me wrong.* Since recovering from her surgery in February, she has been sleeping better. Maybe it's just her age, but maybe it's because tumor was removed from her spine enabling her to get comfortable and finally sleep. Don't get me wrong, she still isn't a good sleeper by any stretch of the imagination. I have yet to get a full night's sleep (except when she was sedated and in the hospital). But lately we've been down to 3-4 wake ups a night, which, believe it or not, is an improvement.

Another change is that we removed the side railing from her crib, turning it into a daybed. This makes actually putting her to sleep much easier on us because she likes to have hands on her (and sometimes she insists on having my head on her too...) as she falls asleep. The mattress is only about a foot off the ground, and we've placed pillows down on the floor in case she falls out. She's not ready for a "big girl bed" yet (maybe I'm not ready), but this is an intermediate step.

Life without the line is very good. The bandage was removed, but she still has some steristrips that are covering the incision that will fall off this week, with a little help. She does notice that the line is gone because she pulls the neck of her shirt out and looks down at her chest and back at me quizzically. I just keep telling her it's all done, and now she will look at her chest and make the all done sign (one of two signs, the other is "more," that she consistently uses).

We are all signed up for swim lessons and will begin on Thursday!

*See? As I was finishing this post she woke up, Ryan is attempting to get her to sleep again.

Surgery Success

Mad's line has been removed! The surgery was very quick, and we were out of the hospital by 10:00 am this morning. The place where the line was is currently being covered by a bandage that we are allowed to remove on Saturday. She can't have a bath for 48 hours, but I don't think she'll mind much. The nurses in the recovery room were very excited for us, and we were told that Mad woke up babbling away to them.

Hurray!