A couple weeks ago Madeleine had an MIBG scan that shows how much of the tumor is still active. She also had her usual urine test. The doctor finally called today to discuss those results. The scan shows that she still has active tumor. Her VMA/HVA numbers are both up a bit from where they have been. VMA is at 32, and was in the 25-31 range for the last four months. HVA is at 41, the highest it's been since April. All of that means that there is still immature tumor, and that it's probably growing a little (as was seen in December's MRI). The doctor is consulting with the specialist in L.A. that we saw over a year ago, and the neurosurgeon. Thankfully no one thinks that chemo is a good idea at this time as maturing tumor does not respond well to chemo. As long as Madeleine isn't having any symptoms (tumor interfering with her ability to walk and move her leg - which so far isn't a problem), surgery to remove it doesn't really make sense right now either.
Except that the tumor may be interfering with her ability to know when to use the bathroom. I know that she is still young, or right about average, for potty training, but I just feel like something isn't right. She really wants to use the potty, but so far hasn't been able to. After explaining my concerns to her doctor we now have an appointment in a couple weeks to see a neuro-oncologist. He will be able to tell if she has sensation in that area or not. If not, surgery might be a good option, because its not like the tumor is ever going to go away, even after it matures. If it's in the way, it will remain in the way until it is removed.
So, I feel disappointed, and frustrated, and a little angry, that we seem to be in the exact same place that we were last year. The tumor is still in the process of maturing (hopefully), and may or may not be causing problems. I know that things could be so much worse. The tumor has not migrated anywhere else, and we are not currently facing chemo, radiation, or surgery. We'll see what the neuro-oncologist and neurosurgeon think, and go from there.
February 3, 2010
December 31, 2009
Christmas
We had a wonderful Christmas at Grandma and Grandpa's house. We also got to visit with some friends that we don't have a chance to see very often, and that was great too. Madeleine got more toys than any child needs ever, but she's happy about it.
Cookie decorating is really fun.
Santa showed up on Christmas Eve for a visit! He looks awfully relaxed here for a guy with such a busy night-before-Christmas schedule, doesn't he?
Christmas morning. The dollhouse was her big Santa gift.
Madeleine's paparazzi
Medically, there is news I haven't really wanted to share, because I'm choosing to believe that it isn't true, until we have more conclusive data. Mad's MRI in early December showed that the tumor may be growing. It's been stable for a number of months, but this measurement showed that it was bigger on all measurements. The measurement could be wrong. Her markers remain about the same, so thankfully they also are not showing growth. Instead of retesting in four months, as was the plan had this scan been stable, she will be rescanned in two months, and she will also have an MIBG (radioactive nuclear medicine scan that shows how much of the tumor is still active) in a couple of months as well. Neither of these scans has been scheduled yet, but I'm holding my breath until then...
Cookie decorating is really fun.
Santa showed up on Christmas Eve for a visit! He looks awfully relaxed here for a guy with such a busy night-before-Christmas schedule, doesn't he?
Christmas morning. The dollhouse was her big Santa gift.
Madeleine's paparazzi
Medically, there is news I haven't really wanted to share, because I'm choosing to believe that it isn't true, until we have more conclusive data. Mad's MRI in early December showed that the tumor may be growing. It's been stable for a number of months, but this measurement showed that it was bigger on all measurements. The measurement could be wrong. Her markers remain about the same, so thankfully they also are not showing growth. Instead of retesting in four months, as was the plan had this scan been stable, she will be rescanned in two months, and she will also have an MIBG (radioactive nuclear medicine scan that shows how much of the tumor is still active) in a couple of months as well. Neither of these scans has been scheduled yet, but I'm holding my breath until then...
December 8, 2009
December 4, 2009
Shabby Chic
I finally got around to taking pictures of Madeleine's room:
I love that the headboard and the frames completely match, that was unplanned. I repainted the dresser to match the headboard. It took a whole lot of sanding and many coats of paint because it was originally stained to match her crib, which was a dark cherrywood color. I'd like to get a small night table too, and I'm occasionally scouring thrift stores for that, but haven't found the right one yet. I didn't show you the blank, white wall that faces the bed. I don't know what to do with it. I'd like to put up some children's artwork, but don't want to spend any money on that project.
I love that the headboard and the frames completely match, that was unplanned. I repainted the dresser to match the headboard. It took a whole lot of sanding and many coats of paint because it was originally stained to match her crib, which was a dark cherrywood color. I'd like to get a small night table too, and I'm occasionally scouring thrift stores for that, but haven't found the right one yet. I didn't show you the blank, white wall that faces the bed. I don't know what to do with it. I'd like to put up some children's artwork, but don't want to spend any money on that project.
November 11, 2009
Birthday pictures
My big girl turned two at the end of October. Her birthday party was on Halloween, so all of her friends came dressed up. Madeleine, who insisted on wearing her turtle costume every day for the entire month of October, only wore her costume for about five minutes the day of Halloween. Of course!
The dragon chooses an India Pale Ale, but is carded by the bartender.
That's one stuck pineapple
We had a great weekend filled with friends and family. My favorite part of the party was when Madeleine took a break from opening presents to look up and see everyone watching her. She said, "look at all the friends!"
The party was luau themed, so of course we had sand and seashells.
Madeleine supervises the party set-up.
Sophia Dragon
The dragon chooses an India Pale Ale, but is carded by the bartender.
That's one stuck pineapple
Amanda Mouse arrived via railway
Afraid of revealing their super powers, the Buzz Lightyears studiously avoid one another.
Humphrey sniffs out the witch (Ashlynn)
Tucker Lightyear wonders just how to get those wings to work
Cade Lightyear - To Infinity and Beyond!
Friends playing in the sand
Enjoying rainbow birthday cake
The beautiful and talented Auntie Karen (all of these pictures are taken by her, or at least by her camera).
Dressed up for trick or treating. Humphrey had to suffer wearing his bee costume for another year.
We had a great weekend filled with friends and family. My favorite part of the party was when Madeleine took a break from opening presents to look up and see everyone watching her. She said, "look at all the friends!"
October 21, 2009
No news is good news
I'm sorry that I haven't posted anything in so long. I'm feeling guilty about abandoning Mad Madam Madeleine, but I really don't have much to say. I never intended to be a "blogger," nor do I now consider myself in that category. If I have a picture, video, or story to share, I will continue to share it here, but I am not going to make myself post things on any kind of a schedule. Of course I will continue to share any medical updates.
Mad's latest VMA/HVA levels are a wee bit higher than they were last month, but our doctor assured me that this is still in the standard deviation for the test, and they are still considering these numbers stable. Standard deviation or not, I hate to see any increase in numbers. I'm hoping they will be back down to previous levels next month. HVA is 45.3 (up from 37.2) and VMA is 31.9 (up from 29.2) for those of you playing along at home. To be cancer free HVA should be no higher than 23 and VMA should be no higher than 18 based on Madeleine's age and weight. When she was first diagnosed, her HVA was 88, and VMA was 133. Wowza!
My friend Andrea showed me how to put pigtails in Mad's hair.
She sleeps like this at every nap and bedtime. Isn't that weird? Ryan sleeps like that too.
You may notice from the picture above that Mad is now in a big girl bed. These past two weeks I've been working on painting and decorating her room. I'm thrilled with the way it's turning out. I'll take better pictures of the whole room soon.
Mad's latest VMA/HVA levels are a wee bit higher than they were last month, but our doctor assured me that this is still in the standard deviation for the test, and they are still considering these numbers stable. Standard deviation or not, I hate to see any increase in numbers. I'm hoping they will be back down to previous levels next month. HVA is 45.3 (up from 37.2) and VMA is 31.9 (up from 29.2) for those of you playing along at home. To be cancer free HVA should be no higher than 23 and VMA should be no higher than 18 based on Madeleine's age and weight. When she was first diagnosed, her HVA was 88, and VMA was 133. Wowza!
My friend Andrea showed me how to put pigtails in Mad's hair.
She sleeps like this at every nap and bedtime. Isn't that weird? Ryan sleeps like that too.
You may notice from the picture above that Mad is now in a big girl bed. These past two weeks I've been working on painting and decorating her room. I'm thrilled with the way it's turning out. I'll take better pictures of the whole room soon.
October 3, 2009
Stating the Obvious
Things have been really good lately. Madeleine is happy, our days are busy, and we are leading a normal life with very few doctor and clinic visits. Mad's physical therapy went so well that she completed her final session this week. Her therapist is positive that now that she is bending her knee, the only thing left is to continue to build strength in her leg. And we can do that at home. She is continuing to love her gymnastics class (especially since her buddy Cade goes now too!), and we have started swim lessons again as well.
Her latest VMA/HVA markers are pretty stable, not going up, but not going down either. The tumor is stable, not growing. She won't be deemed "cancer free" until her markers are back in the normal range for her age. We know that this is just a matter of time until this happens. We are continuing with monthly clinic appointments to test the markers, and MRIs to check the tumor every three months.
So, things are going well, things are moving in a positive direction. After the horribleness and uncertainty of last year, this year has been positively wonderful.
Then why do I feel so bitter sometimes? I can't really explain it. September - which is Childhood Cancer awareness month, made me angry. This happened to me last year too. The only company (that I know of) that does anything in support of Childhood Cancer awareness and funding is Chili's. Meanwhile, there are pink ribbons on my grocery store yogurt lids and mushrooms halfway through September. Mushrooms. I'm not trying to take anything away from breast cancer awareness, I think it's fabulous that so many companies and organizations are supporting and donating to such a worthy cause, but I'm a little jealous. Where is the support for childhood cancer? These are our children, and two classrooms-full of children are diagnosed every school day.
On a more personal level I've noticed that I feel anxious every time a friend's baby is at or near the four-month mark (when Madeleine was diagnosed). I can't figure it out. I'm not worried about their children, I just feel anxious. It makes me want to tell them all about Madeleine being diagnosed and what that time was like. We were at a wedding recently and a college friend was talking about how his four-month old doesn't sleep. I sympathized with him because we had the same problem for many, many months, but in my head I really wanted to say, "...and four months is when Mad was diagnosed, so...[shrug]" I even thought of the gesture that I would use to convey this message. Am I just being selfish because I want everyone to keep remembering? Am I looking for sympathy? I don't know. I don't have a better way of describing this. Also, we would like to have another child eventually, and the other night thinking about that hypothetical child as an infant brought me to tears. Not because having a newborn would be difficult (it would be), but because that baby would eventually be four months old and I would have to deal with that. Is this post traumatic stress disorder?
All of that said, I'm pretty happy. The moments mentioned above are just moments. And they aren't consuming my life, or making me crazy. I debated about posting this because I don't like to share too much about how I feel, and because I don't want you all to think that I'm crazy... maybe just a little damaged :)
I'll leave you with recent pictures to lighten the mood in here:
Early birthday present from Grandma and Grandpa!
Madeleine and her friend, Sophia, at the zoo.
Trying out the Halloween costume
Her latest VMA/HVA markers are pretty stable, not going up, but not going down either. The tumor is stable, not growing. She won't be deemed "cancer free" until her markers are back in the normal range for her age. We know that this is just a matter of time until this happens. We are continuing with monthly clinic appointments to test the markers, and MRIs to check the tumor every three months.
So, things are going well, things are moving in a positive direction. After the horribleness and uncertainty of last year, this year has been positively wonderful.
Then why do I feel so bitter sometimes? I can't really explain it. September - which is Childhood Cancer awareness month, made me angry. This happened to me last year too. The only company (that I know of) that does anything in support of Childhood Cancer awareness and funding is Chili's. Meanwhile, there are pink ribbons on my grocery store yogurt lids and mushrooms halfway through September. Mushrooms. I'm not trying to take anything away from breast cancer awareness, I think it's fabulous that so many companies and organizations are supporting and donating to such a worthy cause, but I'm a little jealous. Where is the support for childhood cancer? These are our children, and two classrooms-full of children are diagnosed every school day.
On a more personal level I've noticed that I feel anxious every time a friend's baby is at or near the four-month mark (when Madeleine was diagnosed). I can't figure it out. I'm not worried about their children, I just feel anxious. It makes me want to tell them all about Madeleine being diagnosed and what that time was like. We were at a wedding recently and a college friend was talking about how his four-month old doesn't sleep. I sympathized with him because we had the same problem for many, many months, but in my head I really wanted to say, "...and four months is when Mad was diagnosed, so...[shrug]" I even thought of the gesture that I would use to convey this message. Am I just being selfish because I want everyone to keep remembering? Am I looking for sympathy? I don't know. I don't have a better way of describing this. Also, we would like to have another child eventually, and the other night thinking about that hypothetical child as an infant brought me to tears. Not because having a newborn would be difficult (it would be), but because that baby would eventually be four months old and I would have to deal with that. Is this post traumatic stress disorder?
All of that said, I'm pretty happy. The moments mentioned above are just moments. And they aren't consuming my life, or making me crazy. I debated about posting this because I don't like to share too much about how I feel, and because I don't want you all to think that I'm crazy... maybe just a little damaged :)
I'll leave you with recent pictures to lighten the mood in here:
Early birthday present from Grandma and Grandpa!
Madeleine and her friend, Sophia, at the zoo.
Trying out the Halloween costume
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