Well, it's a good thing I'm not a betting woman because I was wrong about how the clinic visit went this afternoon. Along with an IVIG (immune booster), Maggie received her scheduled chemotherapy. Maggie's ANC ended up being 2300. Last week her ANC was 840 and I was sure it would continue to drop, but surprisingly so, it boosted back up. Her hemoglobin and platelets have also continued to remain steady, if not even rise a bit. So, Maggie's counts are looking really good right now.
I should also tell you that Maggie is cutting 2 more teeth. The teeth have been slow in coming, but when they come, they come with a vengeance. I don't think that they have affected her too much, but who knows, it probably isn't helping the sleep problem (according to what I read about children teething and it's affect on sleep).
Andy spoke with Dr. French at the clinic this evening and he seems pretty acceptable of our doing Maggie's last inpatient heavy chemo outpatient. I am very happy about this. We would go to the clinic so Maggie could receive her high dose chemo (lasting 4 plus hours) and then she would go home on IV fluids and anti-nausea drugs. Hopefully by doing this, it will ease some of the disruption in our life. We have about 4 more weeks before her last scheduled high dose chemo.
Thank you for your continued prayers for Maggie. Please continue to pray that the chemo will do its job and Maggie will not have any of its side effects.
Monday, March 16, 2009
Sunday, March 15, 2009
Sleep?
We visit the clinic tomorrow afternoon for a scheduled IVIG (immune antibody booster) as well as scheduled chemo. I will be surprised though if Maggie actually gets chemo. With her counts dropping so rapidly last week, I highly doubt they will be at or above 500 (her ANC that is). We will see though.
Maggie has been doing fairly well. She is much more open to crawling around in our house versus in just one room. She is slowly taking to more food (or different types). We have found that what was once her favorites, she now turns away from. This is a bit difficult as we try to find new things for her to eat (and those types of foods that the speech therapist suggested). Maggie enjoys the challenging foods.
We are struggling more than ever right now with Maggie's sleep. She wakes about every 30 minutes to an hour wanting to nurse. She also will wake and point towards the living room, which means she wants to go out and play. It has been very challenging. We have been tempted (and have tried on several occasions) to do the cry-it-out method, however, this has not ever been my philosophy when it comes to parenting. Plus, if any of you know Maggie, she is a very stubborn child and will cry until finally she is gotten. She has lasted over an hour before. After trying again tonight, we have decided to forgo this method and research some other less "painful" strategies in hopes that this might give us some relief.
I know that people have said parenting wouldn't be easy, but you know, just once I would love for a break in the challenges. We are tired. The whole saying, "This too shall pass" doesn't apply to us. I'm not sure that any of those "encouraging" sayings were meant for parents of children with cancer.
Maggie has been doing fairly well. She is much more open to crawling around in our house versus in just one room. She is slowly taking to more food (or different types). We have found that what was once her favorites, she now turns away from. This is a bit difficult as we try to find new things for her to eat (and those types of foods that the speech therapist suggested). Maggie enjoys the challenging foods.
We are struggling more than ever right now with Maggie's sleep. She wakes about every 30 minutes to an hour wanting to nurse. She also will wake and point towards the living room, which means she wants to go out and play. It has been very challenging. We have been tempted (and have tried on several occasions) to do the cry-it-out method, however, this has not ever been my philosophy when it comes to parenting. Plus, if any of you know Maggie, she is a very stubborn child and will cry until finally she is gotten. She has lasted over an hour before. After trying again tonight, we have decided to forgo this method and research some other less "painful" strategies in hopes that this might give us some relief.
I know that people have said parenting wouldn't be easy, but you know, just once I would love for a break in the challenges. We are tired. The whole saying, "This too shall pass" doesn't apply to us. I'm not sure that any of those "encouraging" sayings were meant for parents of children with cancer.
Wednesday, March 11, 2009
Munch, Munch...
Maggie is doing fairly well, overall. In the last two days or so, her mood has really picked up. Sleep is our biggest problem now, as she wakes up a lot during the night.
We went to a speech therapist at Children's yesterday for a feeding evaluation and it was quite informative. Since she hasn't eaten very well during much of her treatment, this was scheduled to evaluate her chewing, swallowing, etc. The appointment was well timed from a food input perspective, too--Maggie has been eating quite a bit (her appetite stimulant medicine must be kicking in). We learned about foods that are appropriate for the level of eating "skill" that she has (we were a little bit ahead of where we should be). We learned that she's chewing in the wrong place (with her front teeth instead of her molar ridges) but that she is doing well with drinking from a cup, which is a fairly advanced skill (involves putting your tongue in the right place, having good lip closure, etc.) We're going to have half hour appointments once a week to teach her and move her along with her chewing skills. One of the other things we learned is that the reason for her frequent wake-ups might be that she's still hungry (in the opinion of a specialist, which is nice to have). We had assumed that it was for comfort, or maybe just a habit. Also, it was very interesting to learn to identify some of the cues that she's been giving us and how to interpret them. So this was a very helpful day.
Monday we went to the clinic and Maggie had IV chemo (Methotrexate) and was sent home fairly quickly. Her counts have fallen in half with one week of her oral chemo plus two low doses of the Methotrexate (though her Platelets and Hemoglobin are on the rise, which is good). That's a pretty rapid fall--but it is more good than bad. Eventually, Dr. French may reduce her dose again if her counts get too low. It's good to know that Maggie is still sensitive to the chemo and that it is effectively dropping her white blood counts.
Today, Whitney takes Maggie to the hospital again (3 straight days!) for her monthly RSV virus vaccine. They seemed to have a several day effect on Maggie last month as she was crabby and less trusting. Hopefully we can avoid that this time since we have a little bit of positive momentum building.
Last thing--two little girls in different parts of the U.S., Alana and Lilly, are also fighting infant leukemia and are facing very difficult and discouraging times. Please say a prayer for them and for their families.
We went to a speech therapist at Children's yesterday for a feeding evaluation and it was quite informative. Since she hasn't eaten very well during much of her treatment, this was scheduled to evaluate her chewing, swallowing, etc. The appointment was well timed from a food input perspective, too--Maggie has been eating quite a bit (her appetite stimulant medicine must be kicking in). We learned about foods that are appropriate for the level of eating "skill" that she has (we were a little bit ahead of where we should be). We learned that she's chewing in the wrong place (with her front teeth instead of her molar ridges) but that she is doing well with drinking from a cup, which is a fairly advanced skill (involves putting your tongue in the right place, having good lip closure, etc.) We're going to have half hour appointments once a week to teach her and move her along with her chewing skills. One of the other things we learned is that the reason for her frequent wake-ups might be that she's still hungry (in the opinion of a specialist, which is nice to have). We had assumed that it was for comfort, or maybe just a habit. Also, it was very interesting to learn to identify some of the cues that she's been giving us and how to interpret them. So this was a very helpful day.
Monday we went to the clinic and Maggie had IV chemo (Methotrexate) and was sent home fairly quickly. Her counts have fallen in half with one week of her oral chemo plus two low doses of the Methotrexate (though her Platelets and Hemoglobin are on the rise, which is good). That's a pretty rapid fall--but it is more good than bad. Eventually, Dr. French may reduce her dose again if her counts get too low. It's good to know that Maggie is still sensitive to the chemo and that it is effectively dropping her white blood counts.
Today, Whitney takes Maggie to the hospital again (3 straight days!) for her monthly RSV virus vaccine. They seemed to have a several day effect on Maggie last month as she was crabby and less trusting. Hopefully we can avoid that this time since we have a little bit of positive momentum building.
Last thing--two little girls in different parts of the U.S., Alana and Lilly, are also fighting infant leukemia and are facing very difficult and discouraging times. Please say a prayer for them and for their families.
Tuesday, March 3, 2009
Quick Update
We're in the clinic today and received good results on Maggie's bone marrow from last week--0% leukemic blasts. This is what we and Dr. French expected (or hoped for) so it was delivered to us in a nonchalant kind of way. However, we can't underestimate how good it is to continue to get those results when they check her bone marrow. We're still on course and the treatment is working so far. As of this week, we are about 1/3 of the way through the treatment, eight months down, about 16 more to go. Maggie has done well so far, but is not close to being out of the woods yet. Just an FYI on her progress and the big picture.
Maggie is starting to feel better coming off of the steroids as well. She's smiling and giggling some now, which is great to see. We're still working on getting her comfortable playing by herself (or getting off of our laps for more than a minute) and her sleep isn't back yet, either. It will be nice to have those recover as well.
Maggie is starting to feel better coming off of the steroids as well. She's smiling and giggling some now, which is great to see. We're still working on getting her comfortable playing by herself (or getting off of our laps for more than a minute) and her sleep isn't back yet, either. It will be nice to have those recover as well.
Saturday, February 28, 2009
Rough
Well, let me just start out by saying that this has been a rough week. The steroids proved to beat Maggie down once again. She has been moaning or crying pretty much non-stop since Thursday. She doesn't nap and her sleep during the night is still, if not more sporadic than before.
Maggie has had her preference of only being with Mommy, unless there is someway of enticing her to go to Andy-- this being very rare. Maggie is quiet for moments of the day when she goes downstairs (this excursion quiets her for a couple of minutes), when we put on the Disney Monkey song and Little Einsteins music prelude on t.v., when she is nursing.
Needless to say this has been very draining on all of us, but I especially feel the hit as I have had Maggie almost constantly since Wednesday afternoon (with the exception of a couple of work excursions). We are all sleep deprived, especially Maggie and me, since she is not napping and wakes up so frequently during the night.
Poor Maggie just acts so miserable and it is so hard to see her this way. Tonight was her last dose of the steroid, so hopefully in the next couple of days she will become more herself again. Please continue to pray for us during this rough stretch.
Maggie has had her preference of only being with Mommy, unless there is someway of enticing her to go to Andy-- this being very rare. Maggie is quiet for moments of the day when she goes downstairs (this excursion quiets her for a couple of minutes), when we put on the Disney Monkey song and Little Einsteins music prelude on t.v., when she is nursing.
Needless to say this has been very draining on all of us, but I especially feel the hit as I have had Maggie almost constantly since Wednesday afternoon (with the exception of a couple of work excursions). We are all sleep deprived, especially Maggie and me, since she is not napping and wakes up so frequently during the night.
Poor Maggie just acts so miserable and it is so hard to see her this way. Tonight was her last dose of the steroid, so hopefully in the next couple of days she will become more herself again. Please continue to pray for us during this rough stretch.
Tuesday, February 24, 2009
Starting all over...
Maggie went to Almost Home this morning to start the phase she began in December, all over again. She is still recovering from the heavy chemo several weeks back, in some ways. Her appetite, sleep, general happiness and independence are still a bit off. She wakes up about every hour most nights. She's now experimenting and interested in trying lots of food (this is good) but she doesn't swallow much at all (not as good). Food sits on her tongue or sticks to the roof of her mouth for several minutes or several hours. Eventually she gags and reaches in her mouth, we put our hand up to her mouth and she unloads.
She had a bone marrow aspiration which was a recommended part of the treatment protocol (which we didn't expect until we saw Dr. French in the procedure room, this is where they check to see if there are leukemia cells or not in the source of all blood cell growth). Dr. French's preliminary look in the lab was that it looks "good." This is ALWAYS nice to hear. When we know that they're checking her spinal fluid or bone marrow for cancer cells, we always get nervous--as you could imagine. But it brings a nice relief knowing that it is clean and that we're still on track. There will be more precise results tomorrow. I'm not sure they'll call us though--I think we'll trust that it is okay unless we hear otherwise. Preventing relapse continues to be our biggest treatment goal--and the source of much of our worry. But Maggie is doing great so far.
They also harvested some spinal fluid and put chemo back into her spinal fluid. This helps to prevent a relapse in her nervous system. Finally, she received a relatively low dose of methotrexate, a chemo drug. All in all, it was a long day and it took longer than usual. It was difficult keeping Maggie from eating leading up to the procedures--that's always hard.
Otherwise, Dr. French is still working hard to improve Maggie's food intake and now her sleep patterns. We're going through some initial steps to seek improvement. He has backup plans in mind, but we'll see how it goes. They also took a stool sample today to see if Maggie's abdominal pain might be from a virus or some kind of
infection. Maggie had 4 dirty diapers during our hospital visit today--something isn't quite right. Dr. French almost got a lap-full when he was finishing her spinal, but he was a good sport about it. Something is still causing some pain and discomfort but this is another time when Maggie being so young works against us. She can't tell us where/how it hurts.
We started her 5-day week of steroids today, as well. That has been a disaster at times in the past. We're hoping for better luck, similar to the last time when it went significantly better. She's on quite a few medicines now--in fact she didn't keep her nighttime doses down. We are going to have to stagger the meds to keep her from throwing up.
So, that's the medical update for today. Tuesday is also Maggie's bath day and we follow that with a dressing change over her broviac access. She wasn't feeling well enough to enjoy her bath like she normally would. She might be achy on the spots on her back where they accessed her bone marrow and spinal fluid. Anyways, it was a busy day today, and everyone in this household is tired.
She had a bone marrow aspiration which was a recommended part of the treatment protocol (which we didn't expect until we saw Dr. French in the procedure room, this is where they check to see if there are leukemia cells or not in the source of all blood cell growth). Dr. French's preliminary look in the lab was that it looks "good." This is ALWAYS nice to hear. When we know that they're checking her spinal fluid or bone marrow for cancer cells, we always get nervous--as you could imagine. But it brings a nice relief knowing that it is clean and that we're still on track. There will be more precise results tomorrow. I'm not sure they'll call us though--I think we'll trust that it is okay unless we hear otherwise. Preventing relapse continues to be our biggest treatment goal--and the source of much of our worry. But Maggie is doing great so far.
They also harvested some spinal fluid and put chemo back into her spinal fluid. This helps to prevent a relapse in her nervous system. Finally, she received a relatively low dose of methotrexate, a chemo drug. All in all, it was a long day and it took longer than usual. It was difficult keeping Maggie from eating leading up to the procedures--that's always hard.
Otherwise, Dr. French is still working hard to improve Maggie's food intake and now her sleep patterns. We're going through some initial steps to seek improvement. He has backup plans in mind, but we'll see how it goes. They also took a stool sample today to see if Maggie's abdominal pain might be from a virus or some kind of
infection. Maggie had 4 dirty diapers during our hospital visit today--something isn't quite right. Dr. French almost got a lap-full when he was finishing her spinal, but he was a good sport about it. Something is still causing some pain and discomfort but this is another time when Maggie being so young works against us. She can't tell us where/how it hurts.
We started her 5-day week of steroids today, as well. That has been a disaster at times in the past. We're hoping for better luck, similar to the last time when it went significantly better. She's on quite a few medicines now--in fact she didn't keep her nighttime doses down. We are going to have to stagger the meds to keep her from throwing up.
So, that's the medical update for today. Tuesday is also Maggie's bath day and we follow that with a dressing change over her broviac access. She wasn't feeling well enough to enjoy her bath like she normally would. She might be achy on the spots on her back where they accessed her bone marrow and spinal fluid. Anyways, it was a busy day today, and everyone in this household is tired.
Thursday, February 19, 2009
Count recovery
We have had quite a busy week that it's been difficult to sit down and update the blog. Here we are though...
Maggie went into the clinic on Monday early morning. With Maggie's counts being so low the week before, I think they intended for her to need a couple transfusions. We were surprised to find that Maggie's counts had rebounded. She had an ANC of 1400 and a white count of 2500. The Neupogen shots did their job once again-- and fairly quickly. Maggie's hemoglobin had stayed the same at 8.6 and so she ended up not needing a transfusion (they transfuse under 8).
Though her counts went back up, her weight did not. Maggie was down to 20 lbs. 11 oz. Dr. French decided to put Maggie on a medicine, Progesterone, to help boost her appetite. She has been on it for several days and while she is becoming more open to trying new foods, especially those that we put into our mouth, Maggie is not eating anything of real quantity yet. Maggie is currently taking potassium because her levels are low and we are trying to put protein supplements into her ice cream as this is also low. It has been frustrating needless to say.
The current plan is to go into the clinic tomorrow to check Maggie's counts and as long as they are at the right number, on Monday she will receive a spinal and chemo, as well as begin steroids.
Thank you all for your prayers. We feel comfort knowing you are "here."
Maggie went into the clinic on Monday early morning. With Maggie's counts being so low the week before, I think they intended for her to need a couple transfusions. We were surprised to find that Maggie's counts had rebounded. She had an ANC of 1400 and a white count of 2500. The Neupogen shots did their job once again-- and fairly quickly. Maggie's hemoglobin had stayed the same at 8.6 and so she ended up not needing a transfusion (they transfuse under 8).
Though her counts went back up, her weight did not. Maggie was down to 20 lbs. 11 oz. Dr. French decided to put Maggie on a medicine, Progesterone, to help boost her appetite. She has been on it for several days and while she is becoming more open to trying new foods, especially those that we put into our mouth, Maggie is not eating anything of real quantity yet. Maggie is currently taking potassium because her levels are low and we are trying to put protein supplements into her ice cream as this is also low. It has been frustrating needless to say.
The current plan is to go into the clinic tomorrow to check Maggie's counts and as long as they are at the right number, on Monday she will receive a spinal and chemo, as well as begin steroids.
Thank you all for your prayers. We feel comfort knowing you are "here."
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