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.
Saturday, February 28, 2009
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."
Friday, February 13, 2009
Low counts
We visited the clinic yesterday to find out how Maggie's counts were fairing. They were in fact rock bottom. Her ANC is at 0 and her white count is at 200. Her hemoglobin is getting low, but not transfusable yet. Her platelets however were at 18,000 and were needing a transfusion. So, thankfully they had some in stock and we were able to get them yesterday evening along with our clinic visit (versus coming back today).
Maggie has been a bit irritable since Wednesday. She had her monthly RSV shot, which seemed to scare her quite a bit and from then on, her demeanor has changed. She has stopped sleeping during the night and woke up every hour on Wednesday evening and every 20 minutes last night until I finally brought her into our bed. She then managed to sleep for about 2 hours at a time.
Maggie's temperature has also been a little more elevated-- in the 99's. We worry that it will get higher which would then mean that we would have to go to the ER and eventually become inpatient due to her low counts. We'd like to avoid that if at all possible. I'm hoping that her elevated temperature is a result of some teething??? Who knows, that was always the joke before when she'd get fevers.
Please pray for Maggie that she will not get any infections during this vulnerable time-- that she will stay clear of mouth sores and the cancer will be completely gone from her body forever.
Please also pray for another child, Alana Bryan, who's blog I have been following-- http://www.caringbridge.org/visit/blessedangelalana. She was diagnosed with infant ALL about a month after Maggie was diagnosed. She has just relapsed. It reminds me how scary this disease really is and how we can never feel completely safe
Maggie has been a bit irritable since Wednesday. She had her monthly RSV shot, which seemed to scare her quite a bit and from then on, her demeanor has changed. She has stopped sleeping during the night and woke up every hour on Wednesday evening and every 20 minutes last night until I finally brought her into our bed. She then managed to sleep for about 2 hours at a time.
Maggie's temperature has also been a little more elevated-- in the 99's. We worry that it will get higher which would then mean that we would have to go to the ER and eventually become inpatient due to her low counts. We'd like to avoid that if at all possible. I'm hoping that her elevated temperature is a result of some teething??? Who knows, that was always the joke before when she'd get fevers.
Please pray for Maggie that she will not get any infections during this vulnerable time-- that she will stay clear of mouth sores and the cancer will be completely gone from her body forever.
Please also pray for another child, Alana Bryan, who's blog I have been following-- http://www.caringbridge.org/visit/blessedangelalana. She was diagnosed with infant ALL about a month after Maggie was diagnosed. She has just relapsed. It reminds me how scary this disease really is and how we can never feel completely safe
Monday, February 9, 2009
Maggie's silliness
All of you know Maggie's love for dogs, but her love doesn't stop there. She loves animals and enjoys making or attempting to make the sounds of them. We are getting to the stage where she is becoming responsive and we just love to talk with her. We hope you enjoy the video as much as we did (and by we, I am including Maggie. She watched with intensity and filled in the animal sounds and body parts all over again.)
Here she is enjoying her time with Aunt Morgan and Mommy.
Maggie Facts
Here's a little departure from the usual updates (well, here's a quick update: we are all fairly well recovered from our stomach ailments, thanks for your concern and prayers).
Fact: Maggie is now 16 months old!
Fact: Maggie was born with dark brown hair, though the doctor said as she pulled her out, "I think I see some red hair." I didn't see any red right away. Eventually, she did grow some red, and her hair was a beautiful brownish-auburn color when she was diagnosed in June.
Fact: Maggie held on to her hair longer than her doctor thought she would after she began chemo. Eventually, her brown hair all fell out, leaving her red highlights. It was good for mom and dad not to be traumatized by all of her hair falling out at once. So, Maggie became known as a redhead. It was cute. And her grandma Lehman was especially proud to have another redhead in the family.
Fact: Maggie recently began growing hair again since it had been a while since she had heavy doses of chemo--she now has somewhat of a dark brown buzz-cut. As the new hair grew back, the longer few tufts of red hair have fallen out. So now, no visible red. It is so healthy looking, too, to see eyelashes and eyebrows again. Of the two pictures on the right, Maggie currently has more of the healthy look of the bottom one (though with shorter hair). Ironically, she was much more sick (leukemia) in the bottom one than in the top in which she looks pale, swelled, and tired. Sorry if that is hard to follow.
Fact: She'll probably lose this hair again in the coming weeks due to this past week's chemo. We have 10 weeks of recovery and low-dose chemo before having our last heavy dose of chemo, 5 more days in the hospital. Tentatively planned for April.
Fact (maybe): Starting early summer, Maggie should start growing hair again, possibly for good. Dr. French said that sometimes hair grows a different color each time it grows and falls out. Often it gets darker over time, and sometimes turns curly when it was once straight. We'll see.
Fact: Dr. French's plan is to remove Maggie's Broviac (which is her long-term IV access in her chest) several weeks after April's chemo, and to replace it with a "port." The benefit of a port is that it would be completely under her skin. This allows her to get wet without us having to wrap her up in saran wrap. We can't wait. It also has a lower risk of getting infected, which is the real medical reason for the switch. Also, as Maggie is now mobile and increasingly curious, her broviac tubes (which hang about a foot outside her body) could get tugged at and come out. That doesn't sound fun. So a port would be safer. Also, the broviac is a lot of extra work and maintenance (weekly dressing changes, daily heparin flushes).
Fact: The downside of a port is that we'd have to punch through her skin with a needle every time she gets blood work done or medicine through an IV. (I am now realizing that I should have warned those of you who don't like visualizing such things, sorry). We'll put numbing cream on the site of her port before going to the doctor's office. Most say this isn't too painful.
Fact: Maggie is a very happy, sweet little girl. It seems as though she doesn't know what she has really gone through. She doesn't hesitate to enter the hospital or the clinic, or when approached by nurses or most doctors (people assume that she has bad associations with that place. Not really so. Sometimes her parents do, though.)
Fact: She doesn't like the hospital volunteer with a long ponytail and the long, braided beard. Though he hasn't poked her or hurt her, she doesn't trust him once he enters her 15 foot safety radius.
Fact: Maggie still needs your prayers as the risk of relapse will be present for the next few years. The longer we go without new cancer cells, the better, though. We are planning on never having to deal with them again, thank you very much.
God Bless,
Andy
Fact: Maggie is now 16 months old!
Fact: Maggie was born with dark brown hair, though the doctor said as she pulled her out, "I think I see some red hair." I didn't see any red right away. Eventually, she did grow some red, and her hair was a beautiful brownish-auburn color when she was diagnosed in June.
Fact: Maggie held on to her hair longer than her doctor thought she would after she began chemo. Eventually, her brown hair all fell out, leaving her red highlights. It was good for mom and dad not to be traumatized by all of her hair falling out at once. So, Maggie became known as a redhead. It was cute. And her grandma Lehman was especially proud to have another redhead in the family.
Fact: Maggie recently began growing hair again since it had been a while since she had heavy doses of chemo--she now has somewhat of a dark brown buzz-cut. As the new hair grew back, the longer few tufts of red hair have fallen out. So now, no visible red. It is so healthy looking, too, to see eyelashes and eyebrows again. Of the two pictures on the right, Maggie currently has more of the healthy look of the bottom one (though with shorter hair). Ironically, she was much more sick (leukemia) in the bottom one than in the top in which she looks pale, swelled, and tired. Sorry if that is hard to follow.
Fact: She'll probably lose this hair again in the coming weeks due to this past week's chemo. We have 10 weeks of recovery and low-dose chemo before having our last heavy dose of chemo, 5 more days in the hospital. Tentatively planned for April.
Fact (maybe): Starting early summer, Maggie should start growing hair again, possibly for good. Dr. French said that sometimes hair grows a different color each time it grows and falls out. Often it gets darker over time, and sometimes turns curly when it was once straight. We'll see.
Fact: Dr. French's plan is to remove Maggie's Broviac (which is her long-term IV access in her chest) several weeks after April's chemo, and to replace it with a "port." The benefit of a port is that it would be completely under her skin. This allows her to get wet without us having to wrap her up in saran wrap. We can't wait. It also has a lower risk of getting infected, which is the real medical reason for the switch. Also, as Maggie is now mobile and increasingly curious, her broviac tubes (which hang about a foot outside her body) could get tugged at and come out. That doesn't sound fun. So a port would be safer. Also, the broviac is a lot of extra work and maintenance (weekly dressing changes, daily heparin flushes).
Fact: The downside of a port is that we'd have to punch through her skin with a needle every time she gets blood work done or medicine through an IV. (I am now realizing that I should have warned those of you who don't like visualizing such things, sorry). We'll put numbing cream on the site of her port before going to the doctor's office. Most say this isn't too painful.
Fact: Maggie is a very happy, sweet little girl. It seems as though she doesn't know what she has really gone through. She doesn't hesitate to enter the hospital or the clinic, or when approached by nurses or most doctors (people assume that she has bad associations with that place. Not really so. Sometimes her parents do, though.)
Fact: She doesn't like the hospital volunteer with a long ponytail and the long, braided beard. Though he hasn't poked her or hurt her, she doesn't trust him once he enters her 15 foot safety radius.
Fact: Maggie still needs your prayers as the risk of relapse will be present for the next few years. The longer we go without new cancer cells, the better, though. We are planning on never having to deal with them again, thank you very much.
God Bless,
Andy
Saturday, February 7, 2009
Nasty bug
Well, unfortunately the bug didn't stop with me, but last night around 2:30am Andy decided to join me at the toilet. Maggie awoke at 2:30 last night as well and decided to vomit in the bed she was sharing with Andy. I guess that topped Andy over the edge and he too was sick.
Thankfully, when you ask for strength from God, he gives it and I was able to take care of Maggie and clean her up. We gave her some Benadryl after which she fell fast asleep. We arranged a make-shift bed in her room by placing a mattress from the couch on the floor. I think she knew that we weren't feeling well and decided to sleep with only getting up 1 time to feed.
My nausea thankfully has not come back since around midnight last night, but unfortunately Andy is just not feeling the best. He seems to have the exact same symptoms as what I have had. Though I am feeling better, I am still quite weak and experiencing some bowel issues. Morgan, my sister, has graciously agreed to come and take care of Maggie while we try to mend.
Please continue to pray for our family, that we will all feel better soon and especially that Maggie will not get this nasty bug that we are experiencing.
Thankfully, when you ask for strength from God, he gives it and I was able to take care of Maggie and clean her up. We gave her some Benadryl after which she fell fast asleep. We arranged a make-shift bed in her room by placing a mattress from the couch on the floor. I think she knew that we weren't feeling well and decided to sleep with only getting up 1 time to feed.
My nausea thankfully has not come back since around midnight last night, but unfortunately Andy is just not feeling the best. He seems to have the exact same symptoms as what I have had. Though I am feeling better, I am still quite weak and experiencing some bowel issues. Morgan, my sister, has graciously agreed to come and take care of Maggie while we try to mend.
Please continue to pray for our family, that we will all feel better soon and especially that Maggie will not get this nasty bug that we are experiencing.
Friday, February 6, 2009
No fun.
First--we are home (as of 7:00 PM tonight), Maggie is done with this week's chemo, and she's still crawling around and having some fun. Those are good things.
But, Maggie had some rough stretches too--she's still vomiting some, but not as much as yesterday. I wish that was the end of the bad news, but Whitney is sick now. She started feeling ill this afternoon at the hospital and eventually, she started vomiting, too. She's been feeling horrible and is going back and forth to the bathroom over and over. She's just very nauseous. At least now we're home. She was so anxious to be home once she got sick. But we had to wait for all of Maggie's medicines to finish, wait for our meds at the pharmacy, and then they discharged us.
Obviously, we don't want Maggie to catch whatever Whitney has, so Whitney has been wearing a mask. Maggie's counts will bottom out in about a week. Whitney was extremely generous and suffered through a couple of feedings for Maggie this evening, but she's just suffering right now. We're going to try to get through the night with Whitney having her room to herself. More than anything, it is so hard to watch her--it looks like a really nasty bug.
Please pray for a night of rest and quick recovery for my ladies.
Goodnight.
But, Maggie had some rough stretches too--she's still vomiting some, but not as much as yesterday. I wish that was the end of the bad news, but Whitney is sick now. She started feeling ill this afternoon at the hospital and eventually, she started vomiting, too. She's been feeling horrible and is going back and forth to the bathroom over and over. She's just very nauseous. At least now we're home. She was so anxious to be home once she got sick. But we had to wait for all of Maggie's medicines to finish, wait for our meds at the pharmacy, and then they discharged us.
Obviously, we don't want Maggie to catch whatever Whitney has, so Whitney has been wearing a mask. Maggie's counts will bottom out in about a week. Whitney was extremely generous and suffered through a couple of feedings for Maggie this evening, but she's just suffering right now. We're going to try to get through the night with Whitney having her room to herself. More than anything, it is so hard to watch her--it looks like a really nasty bug.
Please pray for a night of rest and quick recovery for my ladies.
Goodnight.
Update
It's time to give a quick update. The last few days here in the hospital have been fine. We have been coming and going for work, but one of us is always here with Maggie, of course. I didn't update Tuesday or Wednesday because I really didn't have much to say. Maggie received her chemo, played and had fun in the room during the day, then we pushed Maggie around in her car (with the IV pole rolling along with us) in the evenings. Things went quite well.
Then...
This morning (Thursday) Maggie started to throw up, quite a few times actually, when she woke up. It was tough to watch, though she seemed to be pretty cheerful in between heaves. The doctors gave her Benadryl(which didn't quite do the job) before adding Ativan as well. Both are anti-nausea drugs that tend to cause drowsiness as well. Maggie fought that for a while, but ended up falling asleep around 1 and didn't wake up for 3 hours. She looked pretty loopy when she was awake for a while there. But she didn't do badly through most of the afternoon/evening.
Unfortunately, it started again tonight--similar to this morning. Repeated throw ups with cheeriness in between. We're a bit surprised by all of this as Maggie has handled these chemo drugs without incident before. But, this is how it goes. The doctor thought that she could have this nausea for 3 or 4 more days. Let's hope that's not the case.
We're probably going home tomorrow--she's had chemo for 4 days now, and will wrap it up in the afternoon (Friday). Assuming Maggie gets cleared to go after that, we'll go home in the evening with anti-nausea drugs at the ready.
Monday, February 2, 2009
Inpatient
We were admitted this morning after a fairly long wait checking Maggie's counts. Maggie just barely made her counts, which we were happy about. I spent yesterday cooking 2 casseroles and packing for a week and I really didn't want to go back home and have to do it again later in the week. Plus, I guess I feel the sooner we can get this over with, the sooner we can move on with our life.
We were pleasantly surprised to find out today that Maggie was going to go catheter-free. Dr. Dole, another oncologist decided that it would be better for her to just get frequent diaper changes, and frequent they have been. Andy has been changing diapers about every half hour, if not more.
Maggie received her first doses of the chemo drugs VP-16 and Cytoxan. She will receive 4 more days of these drugs before we can go home. I believe our scheduled time of departure will hopefully be Friday, as long as there are no complications.
My fear with Maggie's new found skill of crawling is that she will again regress being in the hospital. We are making it a point to put Maggie on the floor to crawl around while playing with toys and reading books. She was able to continue crawling today, so that's a good start. I think it also helps that she doesn't have a catheter causing her discomfort while moving and sitting.
Please pray for Maggie especially this week. Pray that the week of chemo goes by without any problems. Pray that Maggie stays infection-free and that she doesn't get sick from the chemo. Please pray especially hard that Maggie will remain fever-free this week as well. In the past, these heavy doses of chemo have caused her body to respond by fevering. This has caused Maggie great pain and discomfort, as well as a possibly longer stay in the hospital.
Thanks-
We were pleasantly surprised to find out today that Maggie was going to go catheter-free. Dr. Dole, another oncologist decided that it would be better for her to just get frequent diaper changes, and frequent they have been. Andy has been changing diapers about every half hour, if not more.
Maggie received her first doses of the chemo drugs VP-16 and Cytoxan. She will receive 4 more days of these drugs before we can go home. I believe our scheduled time of departure will hopefully be Friday, as long as there are no complications.
My fear with Maggie's new found skill of crawling is that she will again regress being in the hospital. We are making it a point to put Maggie on the floor to crawl around while playing with toys and reading books. She was able to continue crawling today, so that's a good start. I think it also helps that she doesn't have a catheter causing her discomfort while moving and sitting.
Please pray for Maggie especially this week. Pray that the week of chemo goes by without any problems. Pray that Maggie stays infection-free and that she doesn't get sick from the chemo. Please pray especially hard that Maggie will remain fever-free this week as well. In the past, these heavy doses of chemo have caused her body to respond by fevering. This has caused Maggie great pain and discomfort, as well as a possibly longer stay in the hospital.
Thanks-
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