Here are some recent pictures. She's getting so much hair now! It's still fine (she has my hair), but at least it's growing.
February 25, 2009
socialization
Yesterday I took Mad to a free Gymboree class. The class was fun, she really enjoyed the interaction with the other kids. And she loved climbing all over the foam mats, slides, and other equipment. This class would be good for continuing to build the strength in her leg, and correcting her balance. We would sign up for the class if it wasn't so expensive. I started looking around to see if I could find another class somewhere else for a little cheaper. I looked at the YMCA, but they are twice the cost, if you factor in a $70 monthly membership, plus the cost of the class itself. I'm still looking around for some low-cost alternatives. I like the idea of classes. I like having the time scheduled. I don't like paying so much money to essentially sing songs and roll balls down a slide.
Here are some recent pictures. She's getting so much hair now! It's still fine (she has my hair), but at least it's growing.
Here are some recent pictures. She's getting so much hair now! It's still fine (she has my hair), but at least it's growing.
Maturation
We met with the our oncologist yesterday and she told us that the pathology on the tumor shows that it is maturing. Depending on where they took measurements it is 5-50% mature.
She is planning to schedule a post-surgery MRI in a month or so, once all the swelling has gone down from her surgery. From there she will have MRIs every three months, and urine tests every month. They carefully watch the VMA and HVA levels in her urine that are markers for the chemicals that the tumor puts out. Those numbers have been steadily climbing over time, falling only after she has had a surgery and tumor is removed, and then climbing again. Our second oncologist, Dr. M., has told us that she expects to see these numbers rise for quite some time while the tumor matures.
We have an appointment in a couple of weeks for a consult with the surgeon for removing her Hickman line!! The line that has been taped to her chest for the past year.
It will be quite some time before we can know that she is cancer-free. This is a process that can take a very long time, and I don't know if we will ever stop holding our breath after every MRI. But it is fantastic news to hear, especially as we are coming up on the one-year anniversary of her diagnosis. If I had known then that it would take a year to finally hear some good news...well, I don't know that I would've made it.
She is planning to schedule a post-surgery MRI in a month or so, once all the swelling has gone down from her surgery. From there she will have MRIs every three months, and urine tests every month. They carefully watch the VMA and HVA levels in her urine that are markers for the chemicals that the tumor puts out. Those numbers have been steadily climbing over time, falling only after she has had a surgery and tumor is removed, and then climbing again. Our second oncologist, Dr. M., has told us that she expects to see these numbers rise for quite some time while the tumor matures.
We have an appointment in a couple of weeks for a consult with the surgeon for removing her Hickman line!! The line that has been taped to her chest for the past year.
It will be quite some time before we can know that she is cancer-free. This is a process that can take a very long time, and I don't know if we will ever stop holding our breath after every MRI. But it is fantastic news to hear, especially as we are coming up on the one-year anniversary of her diagnosis. If I had known then that it would take a year to finally hear some good news...well, I don't know that I would've made it.
February 22, 2009
blog-a-log
I've been horrible about posting pictures lately. In fact I've been bad at taking pictures altogether. Somewhere after 12 months, it really started to dwindle. I'm hoping to put up some pictures this afternoon, or tomorrow.
I received a voice mail from Mad's doctor that stated the the pathology report "looks good." I don't know what that means, but I guess it sounds good. We have a meeting with her on Tuesday morning, so hopefully I will know more after that. Also, the sample was supposed to be sent to L.A., but never was. Dealing with the two different teams and two different hospitals has been somewhat difficult. They aren't really communicating all that well.
The sleep thing is getting better...mostly. Madeleine was given a glow worm toy that lights up and plays music when you tap it. I tried putting this in bed with her yesterday at her nap and I was amazed at how well it worked to put her to sleep without crying. She kept it going for probably about 15 minutes before drifting off, but no tears! We tried it again for bed time last night and she cried while keeping the music and lights on. Eventually Ryan went in the room and just placed a hand on her until she (still keeping the music on!) finally fell asleep. We do have a CD that we play every night, but it doesn't seem to do anything in terms of relaxing her. I like to think that now it prepares her for bedtime, as some kind of signal that sleeping is imminent. If this glow worm works I owe Sarah (who gave it to her) my life, or sanity! And, she slept for a whole five hours in a row last night! She was out from 8:30 until 1:30 this morning. Of course then she wanted "baps" (her word for milk, we can't figure out why, because I've only ever called it "milk") mostly continuously until about 5:30 this morning when she decided to get up for the day.
Madeleine's walking is now back to where it was pre-surgery. I was a little worried for a few days because she wasn't walking at all, but she has really started to take steps on her own again. I imagine that the spine just needed to do some more healing.
Humphrey did very well at his audition, but I don't think he got the job. He really enjoyed getting so much attention though, and it was a funny experience.
I received a voice mail from Mad's doctor that stated the the pathology report "looks good." I don't know what that means, but I guess it sounds good. We have a meeting with her on Tuesday morning, so hopefully I will know more after that. Also, the sample was supposed to be sent to L.A., but never was. Dealing with the two different teams and two different hospitals has been somewhat difficult. They aren't really communicating all that well.
The sleep thing is getting better...mostly. Madeleine was given a glow worm toy that lights up and plays music when you tap it. I tried putting this in bed with her yesterday at her nap and I was amazed at how well it worked to put her to sleep without crying. She kept it going for probably about 15 minutes before drifting off, but no tears! We tried it again for bed time last night and she cried while keeping the music and lights on. Eventually Ryan went in the room and just placed a hand on her until she (still keeping the music on!) finally fell asleep. We do have a CD that we play every night, but it doesn't seem to do anything in terms of relaxing her. I like to think that now it prepares her for bedtime, as some kind of signal that sleeping is imminent. If this glow worm works I owe Sarah (who gave it to her) my life, or sanity! And, she slept for a whole five hours in a row last night! She was out from 8:30 until 1:30 this morning. Of course then she wanted "baps" (her word for milk, we can't figure out why, because I've only ever called it "milk") mostly continuously until about 5:30 this morning when she decided to get up for the day.
Madeleine's walking is now back to where it was pre-surgery. I was a little worried for a few days because she wasn't walking at all, but she has really started to take steps on her own again. I imagine that the spine just needed to do some more healing.
Humphrey did very well at his audition, but I don't think he got the job. He really enjoyed getting so much attention though, and it was a funny experience.
February 17, 2009
Scratch
I'm too tired to give you an actual post, so I'll just hit the highlights:
- Sleep: Fell asleep last night with minimal crying. However, woke up at her normal 11:45 pm wake-up time and didn't go back to sleep until 1:30 am. She nursed once and then laid in bed and whined for almost two hours. Part of the problem is that her back is very itchy where the surgery incision is healing. Woke again 15 minutes later and I brought her into bed with us. She made me scratch her back all night. Very little sleep last night for all of us
- On being "hardcore": We strive to treat Madeleine just like we would treat a healthy child. Obviously there are times when that practice flies out the window, but I refuse to coddle her and have her grow up to believe that she can blame all problems on childhood cancer. It is unfair and it unbelievably sucks that she has to deal with this, but that will not be an excuse for us not to set limits and expectations. She is at an age where she understands a lot of what is said to her, and understands things that she shouldn't do (she censors herself by saying "nonono" while reaching for something she shouldn't, and then stops herself from grabbing it). This is something I've been thinking about lately.
- Today's nap: Just when I though this sleep thing was never going to work, she put herself to sleep. Cried for five minutes, comforted her, cried for about 15 minutes and then put herself to sleep - without me in the room! At least I think she's asleep. This is when it would be nice to have one of those video baby monitors!
- Humphrey: Has an audition today for a print ad! I sent in his picture on a whim yesterday
to someone who was looking for a Basset for an ad campaign. He is one of the finalists. Sadly he is horribly behaved so I doubt he'll get the part. - New blog layout: Unless you are reading via RSS (and really, why aren't you? It's so easy), you'll notice the new design. I like to play with the design and CSS/HTML as often as I like moving around my furniture (a lot). This new design doesn't put pictures where they are supposed to go, so some of the past entries are a little messed up with the text not appearing where it should. Hopefully I'll get this resolved soon.
- A proposal: I'm very excited because Uncle Kyle and Aunt Karen are now engaged! He proposed on Valentine's Day. I hope I'm not spoiling anything by posting this here. I gave you a whole day to tell people!
February 16, 2009
Sleep Training
Last night we started the sleep training process. I took the advice of a comment (thanks, Jen!), and tried a modified cry it out approach. I nursed her and then put her down awake in her crib. Left the room and let her cry for five minutes. Went back in, picked her up, sort of settled her down (not really because she wanted to nurse to sleep and I wasn't giving that to her), left the room. She cried for fifteen minutes before Ryan went in to sit with her. He didn't pick her up, and she eventually got the idea that he wasn't going to and laid down. Ryan said it was like a light going on when she figured out that he wasn't going to pick her up. He sat in the room until she fell asleep. She slept for maybe an hour before she woke up. I gave in and let her nurse, but didn't let her fall asleep that way. She went back to her crib and laid there, awake but drowsy, for a long time. She didn't cry. I stayed in the room with her, sang to her for awhile, and as she started to fall asleep she insisted on holding my hand. It took a long time to extricate myself from her grasp once she fell asleep. She woke up crying a few minutes after I left the room. Ryan went in and sat in the room with her, not touching her, not picking her up. She quickly fell asleep and stayed that way for a couple of hours. The next time she woke up was around 12:30, and we let her come into bed with us, as is the usual middle of the night protocol. We want to work on that too, but I think we need to take things one step at a time.
For her nap this afternoon I followed a similar plan and let her nurse, put her down awake where she did not protest. She was tired but wanted to play, so I left the room and let her cry for five minutes. Went back in and rubbed her back, but didn't pick her up, and she fell asleep within a few minutes.
This is a lot of work but I think that we are making progress. She is learning that it's okay to fall asleep in her crib. She hasn't been protesting being put in her crib except for that first time. She does cry when we leave the room, and still needs the physical contact, or even presence, in order to fall asleep, but we're taking it one step at a time, and I believe that she will get to the point where we can lay her down awake and leave the room with no crying.
Thank you for all of the great comments and emails that you sent me about this issue! I should've asked for help long ago! I'm also looking into gettting the product that Sarah mentioned (see the past post comments). I looked at Target this weekend, but couldn't find it. I may have to order in online as I do believe that would help once she is in that drowsy state.
On another note, I will be calling the hospital tomorrow to find out when we should hear about the pathology report. I almost don't want to know the results.
For her nap this afternoon I followed a similar plan and let her nurse, put her down awake where she did not protest. She was tired but wanted to play, so I left the room and let her cry for five minutes. Went back in and rubbed her back, but didn't pick her up, and she fell asleep within a few minutes.
This is a lot of work but I think that we are making progress. She is learning that it's okay to fall asleep in her crib. She hasn't been protesting being put in her crib except for that first time. She does cry when we leave the room, and still needs the physical contact, or even presence, in order to fall asleep, but we're taking it one step at a time, and I believe that she will get to the point where we can lay her down awake and leave the room with no crying.
Thank you for all of the great comments and emails that you sent me about this issue! I should've asked for help long ago! I'm also looking into gettting the product that Sarah mentioned (see the past post comments). I looked at Target this weekend, but couldn't find it. I may have to order in online as I do believe that would help once she is in that drowsy state.
On another note, I will be calling the hospital tomorrow to find out when we should hear about the pathology report. I almost don't want to know the results.
February 13, 2009
Taking back the night
We will soon be enacting the great plan to get more sleep. This will involve putting Madeleine down in her crib semi-awake, and hoping that she will eventually be able to put herself back to sleep when she wakes up. We don't really have much of a plan, but know that it will involve a lot of screaming and crying (from her and me, most likely). I have been mostly against this plan, but it really is something that needs to happen sometime soon. Currently she nurses to sleep, and she wakes to nurse at least every two hours if not much much more. I've talked the sleep problem over with the pediatrician, and with one of her oncologists in L.A. Both doctors are against the standard "cry it out" program, but everyone agrees that we need to do something. Part of that is getting her to realize that she can fall asleep in other ways. I'm trying very hard to gear myself up to do this, because I know that in the long run it will be better for all of us.
She needs a few more days to heal and hopefully de-stress from the hospital. She has been nearly impossible to put to sleep these past couple of nights since we've been home. She's been going to bed very late, around midnight, and it takes a herculean effort to get her to actually go to sleep. Hours spent rocking and nursing only to put her down asleep and have her wake up completely hysterical five minutes later. Tylenol with codeine worked very well in the hospital to put her to sleep, but it seems to have the opposite effect here at home. She has needed some pain meds, and we've been using a mixture of straight tylenol, and tylenol with codeine.
Any advice on how to do this sleep thing will be appreciated!
Starlet in the making. Her sunglasses are her favorite accessory.
Reading in her chair.
Surgery scar.
She needs a few more days to heal and hopefully de-stress from the hospital. She has been nearly impossible to put to sleep these past couple of nights since we've been home. She's been going to bed very late, around midnight, and it takes a herculean effort to get her to actually go to sleep. Hours spent rocking and nursing only to put her down asleep and have her wake up completely hysterical five minutes later. Tylenol with codeine worked very well in the hospital to put her to sleep, but it seems to have the opposite effect here at home. She has needed some pain meds, and we've been using a mixture of straight tylenol, and tylenol with codeine.
Any advice on how to do this sleep thing will be appreciated!
Starlet in the making. Her sunglasses are her favorite accessory.
Reading in her chair.
Surgery scar.
February 11, 2009
Home
After seven hours of not peeing (seriously), Mad finally let loose and we were allowed to leave.
We are back home and she is doing great, almost back to normal.
We are back home and she is doing great, almost back to normal.
Wednesday update
We are currently sitting in Madeleine's hospital room waiting for her to pee. They won't let us go home until she goes. It's been hours! Her catheter was removed this morning, her IV was taken out, and her leads removed. We spent some time in the playroom, but have mostly been hanging out in her room.
She did pretty well overnight. She was mostly kept doped up on the tylenol with codeine which made her sleep except for between 2-3:30 am (of course).
She walked this morning, and is continuing to become more and more stable on her feet. She is just on tylenol now, and doesn't seem to be having any pain.
We've been loading her up with fluids, she's got to go sometime soon, right? We're eager to get home.
The next step is waiting on the pathology of the tumor. I believe that this will take a couple of weeks. We are hoping that the pathology comes back showing that the tumor is maturing.
She did pretty well overnight. She was mostly kept doped up on the tylenol with codeine which made her sleep except for between 2-3:30 am (of course).
She walked this morning, and is continuing to become more and more stable on her feet. She is just on tylenol now, and doesn't seem to be having any pain.
We've been loading her up with fluids, she's got to go sometime soon, right? We're eager to get home.
The next step is waiting on the pathology of the tumor. I believe that this will take a couple of weeks. We are hoping that the pathology comes back showing that the tumor is maturing.
February 10, 2009
From the hospital
The hospital now has wireless intenet, yes!
Mad is doing pretty well. She can't really sit up yet, it hurts too much, so she leans to one side, propped up with pillows. She had some tylenol with codeine, which knocked her out for a few hours. Right now she is just on tylenol, but she's pretty cranky. I think we may switch back to the codeine for tonight.
There really isn't much to update. Ryan stayed with her overnight last night, so I will stay tonight. It was weird to be home with no one there, but the full night of sleep sure was nice. We are hoping to be out of here in a day or two.
Mad is doing pretty well. She can't really sit up yet, it hurts too much, so she leans to one side, propped up with pillows. She had some tylenol with codeine, which knocked her out for a few hours. Right now she is just on tylenol, but she's pretty cranky. I think we may switch back to the codeine for tonight.
There really isn't much to update. Ryan stayed with her overnight last night, so I will stay tonight. It was weird to be home with no one there, but the full night of sleep sure was nice. We are hoping to be out of here in a day or two.
February 9, 2009
Surgery Update
Madeleine's surgery lasted about two and a half hours. When we met with the surgeon he said that it went just about perfectly, which was great news to hear after some anxious waiting around.
The tumor from her spinal column has been almost totally removed, and the column is now clear. She is recovering in the IMU, a step between the PICU and the regular hospital room. We are VERY relieved not to be in the PICU. She is currently hooked up to a catheter, and some heart and respritory monitoring leads, but that is it! She was extubated and the arterier line was pulled before we saw her, which is a first. Her pain is being managed with morphine and some other drugs and she is doing very well. She woke up briefly this evening, and was very groggy, but was able to eat.
They estimate that we will be in the hospital for 2-3 days. Much better than we were orignally expecting.
So things went very well. Thank you for thinking of us today!
The tumor from her spinal column has been almost totally removed, and the column is now clear. She is recovering in the IMU, a step between the PICU and the regular hospital room. We are VERY relieved not to be in the PICU. She is currently hooked up to a catheter, and some heart and respritory monitoring leads, but that is it! She was extubated and the arterier line was pulled before we saw her, which is a first. Her pain is being managed with morphine and some other drugs and she is doing very well. She woke up briefly this evening, and was very groggy, but was able to eat.
They estimate that we will be in the hospital for 2-3 days. Much better than we were orignally expecting.
So things went very well. Thank you for thinking of us today!
February 8, 2009
Preparing
We are getting ready for the surgery tomorrow. I'm starting to feel a little anxious. You may think that by now, the third surgery, I would have this all under control, but I do not. I don't think this is something that ever gets any easier.
The MRI and CT scan went fine on Friday. Of course the timing got all messed up, as it inevitably does and we were at the hospital for much longer than expected. When we check in for a procedure that involves sedation they always ask when the last time was that she ate. I know that she is not allowed to eat solids after midnight, and can drink liquids up until 6 hours before the sedation. Because they told me that the MRI would be at 1:30, I calculated that she could be fed at 7:30am. Well, the person that called me either had the time wrong, or it somehow changed over night because when I told the registration person that her last feeding was at 7:30am (it was actually later than that. I always fudge a little on the times because I know that breastmilk digests pretty fast), she wrote "NPO VIOLATION" in a big red pen on her binder. NPO somehow means nothing by mouth. Anyway, everything ended up working out okay because the MRI people were running late.
And now we're just getting ready for tomorrow. The surgery is scheduled for about 12:30, but Neurosurgery asked if we could check in a little bit earlier than normal because they think that they will be able to start earlier. Both grandmas and grandpas are here and we're ready to do this thing! I will update here tomorrow when I can. Thanks in advance for your thoughts and prayers tomorrow!
The MRI and CT scan went fine on Friday. Of course the timing got all messed up, as it inevitably does and we were at the hospital for much longer than expected. When we check in for a procedure that involves sedation they always ask when the last time was that she ate. I know that she is not allowed to eat solids after midnight, and can drink liquids up until 6 hours before the sedation. Because they told me that the MRI would be at 1:30, I calculated that she could be fed at 7:30am. Well, the person that called me either had the time wrong, or it somehow changed over night because when I told the registration person that her last feeding was at 7:30am (it was actually later than that. I always fudge a little on the times because I know that breastmilk digests pretty fast), she wrote "NPO VIOLATION" in a big red pen on her binder. NPO somehow means nothing by mouth. Anyway, everything ended up working out okay because the MRI people were running late.
And now we're just getting ready for tomorrow. The surgery is scheduled for about 12:30, but Neurosurgery asked if we could check in a little bit earlier than normal because they think that they will be able to start earlier. Both grandmas and grandpas are here and we're ready to do this thing! I will update here tomorrow when I can. Thanks in advance for your thoughts and prayers tomorrow!
February 5, 2009
Fundraising Awareness
I have always wanted to complete a half (or whole) marathon.
This year, two of my friends who are on quests to better their lives, and rediscover themselves are participating in the San Diego Rock 'N Roll half-marathon. I am very proud of them. I will be out of town during the marathon, or I would be doing it with them. They are training with Team in Training.
Team in Training's goal is to raise money for cancer research. They focus on leukemia, lymphoma, Hodgkin lymphoma and myeloma. These are blood cancers, but I believe that any cancer research and funding will ultimately help find a cure for all cancers. The team as a whole has "honorary teammates," and each participant can also walk or run for personal honorary teammates. Danelle has chosen to include Madeleine as one of her teammates.
I know that money is tight right now, but if you can spare something (even a couple of dollars helps), please make a donation to Danelle or Jenn's fundraising goals to help to find a cure. The links will take you to their personal blogs where you can read about their journeys. From there click on the Team in Training logo to go to their fundraising pages. If you can't donate anything right now, post a comment on their blogs and help to cheer them on!
This year, two of my friends who are on quests to better their lives, and rediscover themselves are participating in the San Diego Rock 'N Roll half-marathon. I am very proud of them. I will be out of town during the marathon, or I would be doing it with them. They are training with Team in Training.
Team in Training's goal is to raise money for cancer research. They focus on leukemia, lymphoma, Hodgkin lymphoma and myeloma. These are blood cancers, but I believe that any cancer research and funding will ultimately help find a cure for all cancers. The team as a whole has "honorary teammates," and each participant can also walk or run for personal honorary teammates. Danelle has chosen to include Madeleine as one of her teammates.
I know that money is tight right now, but if you can spare something (even a couple of dollars helps), please make a donation to Danelle or Jenn's fundraising goals to help to find a cure. The links will take you to their personal blogs where you can read about their journeys. From there click on the Team in Training logo to go to their fundraising pages. If you can't donate anything right now, post a comment on their blogs and help to cheer them on!
MRI tomorrow
Insurance finally authorized everything and we are good to go for tomorrow's MRI and CT scans.
The surgery will be happening on Monday, around noon. I will update here when I can. We are hoping that this surgery won't be as long, or difficult as the previous surgeries. The surgeons are going through the spine again, and will be getting enough tumor for a biopsy, as well as debulking what they can.
I'm not looking forward to the surgery, but I'm certainly looking forward to being done with it. Hopefully this will be the last surgery and she will be on her way to recovery.
The surgery will be happening on Monday, around noon. I will update here when I can. We are hoping that this surgery won't be as long, or difficult as the previous surgeries. The surgeons are going through the spine again, and will be getting enough tumor for a biopsy, as well as debulking what they can.
I'm not looking forward to the surgery, but I'm certainly looking forward to being done with it. Hopefully this will be the last surgery and she will be on her way to recovery.
Subscribe to:
Posts (Atom)