Hi everyone,
Maggie is doing pretty well, and we are happy. Her infection has been identified and the antibiotic that she was on initially is a good match. She hasn't had a fever in 50 hours or so. That is great news! They have talked about keeping an eye on her here in the hospital until tomorrow or Saturday--they don't want to send us away before they know that the bug is taken care of. Our understanding is that this infection can be dangerous if it isn't treated, but it is well under control. It seems the only question now is whether it will stay clear in her broviac. But on the infection front, it is so far, so good.
Maggie still hasn't felt good for the last few days. Lots of straight faces, scowls, and angry steroid screams. She did have her chemo treatment that was scheduled for today, so that is good too. Also, she had a blood transfusion today, and will receive a platelet transfusion tomorrow. Over the last 3 days, her counts have dropped in half each day. So they are on their way down, we'll see how far down they go.
As I type this, Maggie is talking, smiling and giggling while playing with Whitney, so we're thrilled to see that. It has been a rough week. Hopefully she's on her way back to her normal self.
Thursday, September 25, 2008
Tuesday, September 23, 2008
Waiting Game
Maggie has gotten a few fevers since Monday, most recently at 6 this evening. Her blood cultures from Monday's initial fever are growing a gram negative bacteria, so she has an infection. What does this mean? Well, it is again possible that her broviac (central IV) might need to be removed if they can't clear the infection from the tubing. Hopefully we'll hear tomorrow that they have a good antibiotic for her bug and that she's on her way to getting better.
For clarification sake--when she gets a fever, there is a standard protocol that they follow. First, they draw blood and send it to the lab to watch it "grow." At the same time, they mix some of the blood with different antibiotics to see which one(s) work the best to kill the infection. They also give her Tylenol to reduce the fever, and start her on an antibiotic that is good for a broad range of infections. Hopefully this helps get rid of the infection until they know more specifically what the infection is. However, it takes several days for this process to take place. They usually draw blood again 24 hours after the initial bloodwork and repeat the "culture" process to check to see if the infection is still there and if it is weakened. In a couple days, they then know more about the infection, sometimes they change the antibiotic to a better one, and hopefully it is just a short time before it is all gone.
Though we know little about the types of infections, they classify them into gram positive or gram negative bacteria. You can google those terms to learn more detail if you want. Typically, gram negative bacteria come from the intestines or from contact with stool.
Maggie's bug then, either is from her IV tubing coming into contact with her diaper area (not likely because Maggie was constipated the last few days from her chemo). The other way that she can get a gram negative bug is kind of a side effect of the chemo, if I understand it correctly. The chemo attacks cells that rapidly divide (to kill off cancer cells), but also tend to affect other cells that rapidly divide: hair cells(that's why it falls out), skin, and the lining of your mouth (hence Maggie's mouth sores), throat, stomach, and the rest of the GI tract. So, the lining of your stomach or intestines, which contain lots of bacteria naturally, gets broken down and the bacteria can seep into the bloodstream. Then, in a matter of time, fevers begin. That's my amateur understanding, probably filled with errors.
Our hope is that Maggie's bug is identified soon and more importantly, it clears soon and doesn't cause any more problems. Some bugs are easier to treat than others, so we'll hope for good news in the morning or whenever the situation becomes clear. That's the "wait" that I referred to in the title. We know that she's sick, we watch her feel yucky, cultures are drawn, we wait........we get a little more info, then we wait............and hope, and hopefully we don't worry too much in the meantime. Thankfully her counts are still high enough that they should help fight the infection for a couple more days before they are depleted by the chemo.
Please pray for good reports from the doctors, that her infection clears, that her broviac doesn't need to be removed, and that chemo continues as scheduled later this week. It is ironic to know that we received great news of Maggie's remission just days ago, yet we still have to be wary of the other risks to her treatment and health. The chemotherapy continues for another 20 or so months to make sure that the cancer cells are totally gone. Along with the chemo is the weakening of her immune system and the risk of infections. It is clear that we never get to fully relax. And the waiting is so hard.
For clarification sake--when she gets a fever, there is a standard protocol that they follow. First, they draw blood and send it to the lab to watch it "grow." At the same time, they mix some of the blood with different antibiotics to see which one(s) work the best to kill the infection. They also give her Tylenol to reduce the fever, and start her on an antibiotic that is good for a broad range of infections. Hopefully this helps get rid of the infection until they know more specifically what the infection is. However, it takes several days for this process to take place. They usually draw blood again 24 hours after the initial bloodwork and repeat the "culture" process to check to see if the infection is still there and if it is weakened. In a couple days, they then know more about the infection, sometimes they change the antibiotic to a better one, and hopefully it is just a short time before it is all gone.
Though we know little about the types of infections, they classify them into gram positive or gram negative bacteria. You can google those terms to learn more detail if you want. Typically, gram negative bacteria come from the intestines or from contact with stool.
Maggie's bug then, either is from her IV tubing coming into contact with her diaper area (not likely because Maggie was constipated the last few days from her chemo). The other way that she can get a gram negative bug is kind of a side effect of the chemo, if I understand it correctly. The chemo attacks cells that rapidly divide (to kill off cancer cells), but also tend to affect other cells that rapidly divide: hair cells(that's why it falls out), skin, and the lining of your mouth (hence Maggie's mouth sores), throat, stomach, and the rest of the GI tract. So, the lining of your stomach or intestines, which contain lots of bacteria naturally, gets broken down and the bacteria can seep into the bloodstream. Then, in a matter of time, fevers begin. That's my amateur understanding, probably filled with errors.
Our hope is that Maggie's bug is identified soon and more importantly, it clears soon and doesn't cause any more problems. Some bugs are easier to treat than others, so we'll hope for good news in the morning or whenever the situation becomes clear. That's the "wait" that I referred to in the title. We know that she's sick, we watch her feel yucky, cultures are drawn, we wait........we get a little more info, then we wait............and hope, and hopefully we don't worry too much in the meantime. Thankfully her counts are still high enough that they should help fight the infection for a couple more days before they are depleted by the chemo.
Please pray for good reports from the doctors, that her infection clears, that her broviac doesn't need to be removed, and that chemo continues as scheduled later this week. It is ironic to know that we received great news of Maggie's remission just days ago, yet we still have to be wary of the other risks to her treatment and health. The chemotherapy continues for another 20 or so months to make sure that the cancer cells are totally gone. Along with the chemo is the weakening of her immune system and the risk of infections. It is clear that we never get to fully relax. And the waiting is so hard.
Monday, September 22, 2008
Not so fast...
So, Maggie hasn't been feeling real well all weekend--Whitney and I have agreed that this combination of chemo drugs (4 drugs, 8 total doses plus the chemo that they insert into her spinal fluid) over 4 days has been the most potent for Maggie. Last time we had these (the week of Maggie's diagnosis) she had mouth sores that cost us 2 1/2 weeks in the hospital and a lot of morphine.
This morning, after a night which Maggie moaned through at times, her temperature was in the mid 99 range. She wasn't smiling. We had been expecting to be discharged early today but we were worried that she wasn't herself. Her temperature kept creeping up to 100.8 or so by early afternoon, close enough to an official fever (the hospital considers a temp of 38.3 C, or 101 F to be a fever). So they drew blood cultures, started her on antibiotics and we are here, it would seem, for another couple days. She threw up a couple of times, has slept quite a bit, and has continued to cling to Whitney. So we are frustrated to be here still, but comfortable knowing that we won't have to go home only to rush back in the middle of the night as we've done before.
This weekend brought reminders of how strong our family is. It would amaze you if you saw the nurses come into the room to give Maggie her chemo. They wear a mask, eye goggles, gloves, and a big blue plastic robe anytime they handle the chemo. It's too toxic to be casual, after all. Kind of suggests how serious these drugs are. Of course they go into Maggie's body with the task of killing cells. She gets no goggles or gloves, that is for sure. I'm still affected by that sight every time. Maggie is so very strong and resilient. I'm extremely proud of her.
And Whitney's amazing, too. Hour after hour she is at Maggie's side. When Maggie doesn't feel well, or is uncomfortable with all of the medical personnel or her surroundings, she clings to her mother. I can't imagine a more loyal and loving display than what Whitney does on a daily basis. Of course any free moment that she has during the day is spent working, either from here or away. It's not uncommon to see Maggie clinging to Whitney taking a nap, and Whitney is typing away, reading to prepare for her teaching, or making a phone call. She never gets to let up.
Anyways, these ladies are amazing. More later.
This morning, after a night which Maggie moaned through at times, her temperature was in the mid 99 range. She wasn't smiling. We had been expecting to be discharged early today but we were worried that she wasn't herself. Her temperature kept creeping up to 100.8 or so by early afternoon, close enough to an official fever (the hospital considers a temp of 38.3 C, or 101 F to be a fever). So they drew blood cultures, started her on antibiotics and we are here, it would seem, for another couple days. She threw up a couple of times, has slept quite a bit, and has continued to cling to Whitney. So we are frustrated to be here still, but comfortable knowing that we won't have to go home only to rush back in the middle of the night as we've done before.
This weekend brought reminders of how strong our family is. It would amaze you if you saw the nurses come into the room to give Maggie her chemo. They wear a mask, eye goggles, gloves, and a big blue plastic robe anytime they handle the chemo. It's too toxic to be casual, after all. Kind of suggests how serious these drugs are. Of course they go into Maggie's body with the task of killing cells. She gets no goggles or gloves, that is for sure. I'm still affected by that sight every time. Maggie is so very strong and resilient. I'm extremely proud of her.
And Whitney's amazing, too. Hour after hour she is at Maggie's side. When Maggie doesn't feel well, or is uncomfortable with all of the medical personnel or her surroundings, she clings to her mother. I can't imagine a more loyal and loving display than what Whitney does on a daily basis. Of course any free moment that she has during the day is spent working, either from here or away. It's not uncommon to see Maggie clinging to Whitney taking a nap, and Whitney is typing away, reading to prepare for her teaching, or making a phone call. She never gets to let up.
Anyways, these ladies are amazing. More later.
Sunday, September 21, 2008
Continued Chemotherapy
The last couple of days have been a bit trying on Maggie (and on her parents). Maggie began steroids on Thursday and I am pretty sure they have kicked in. She has been quite fussy--nothing seems to entertain or please her. I think the chemo she has gotten the last couple of days have caused her to be needy as well as, we have spent most of the past 2 days nursing in bed. I have become her human pacifier. She just doesn't quite seem herself and it is evident in her behavior and neediness for Mommy. We have been able to take her off of IV fluids for awhile each day so that she might drive her red car around the hospital grounds. This seems to excite her as she will sit in her car with one arm perched on her back rest and the other on the wheel. She's already practicing the "cool" pose of driving around in a convertible. We look to go home tomorrow morning (probably after late morning rounds). The plan is to then come back to the clinic on Friday for another outpatient dose of chemo and blood counts. We pray that Maggie doesn't get any mouth sores (as last time she had this combination of chemo we were back in the hospital 6 days after discharge). We also pray that Maggie will stay infection free as this chemotherapy will knock her counts down to zero. Thank you all for your continued prayers.
Friday, September 19, 2008
Comfort & Joy
I must confess to each of you that as I added to Maggie's blog yesterday about her being in remission, my heart was not as joyful as it should have been. When Dr. French came in yesterday to let us know that Maggie was in remission and that her marrow showed less than 1% blast cells, I was not put to ease. Me, being a perfectionist, wanted to hear that there were no blasts or as I understood blasts being leukemic blast cells. I spent all night wondering and worrying about why there might be some blasts still showing in her marrow if after her first week of treatment she had 0% blasts. So, while I should have been rejoicing to hear the wonderful news of remission, I was stuck on the percentage of blast cells still in her body.
When Dr. French made his rounds this morning, I made sure to ask him the questions that circulated in my head all night. When he entered, I immediately told him I had a couple of questions. He bantered ever so briefly about the word "couple" (I think we are getting the reputation of asking a lot of questions and if any of you know our doctor, he is one that is not normally the bantering type so this was a pleasant surprise as well). Anyways, I shared with him my concerns about the 1% leukemic blast cells shown in her marrow. He immediately stopped me and reiterated that to be in remission the marrow should have less than 5% blast cells and Maggie had less than 1%--meaning hardly detectable (and he also shared that depending on who is reading the slide, others might consider it to be 0%). He also explained to me that blast cells do not necessarily mean leukemic cells. Throughout this experience, whenever I hear the word blasts, I immediately thought leukemia because Maggie's marrow was filled with 80% leukemic blasts when first tested. The word blast means immature cells that eventually become mature cells in the body as long as they are not compromised by leukemia.
Though I might not be in full understanding of the process of cell division and birth (and though I might only be confusing others), what I want to share with you all during this post is that I feel more at ease and joyful that my baby is now in remission. I should have felt all the joy in the world yesterday, but I have had my guard up for so long that it requires continual reassurance that everything is going to work out, and Dr. French provided some of that. I have also been reading many different stories of children plagued with cancer and relapsing or having complications. It scares me more than anything to know that this is always a high possibility. I ache for every mother out there pleading with God not to take their baby, as I am also one of them. When you give birth to a child, you don't ever expect to go through something like this. I continue to ask Andy if there is anything worse than what we are going through, and though I am sure there is, we haven't come up with anything.
I appreciate you all listening to my thoughts. Normally I don't want to use Maggie's site to share things like this because I view this site as Maggie's--sharing what she is going through and not what we, as her parents are experiencing. I wanted you all to know that I do thank God for the news of remission because I don't think the post from yesterday demonstrated this. Though I still wrestle with God with questions of "why us" and sometimes grow angry at what Maggie is going through, I am slowly coming to grips with our new life. As I have shared with Andy before, if I knew that the end result would be a cured Maggie, I would be able to go through this experience with less negativity, worry, etc.. But of course, that is not the way life is.
So, (yes Whitney, get to the point of what you are trying to say)-- Yes, Praise the Lord for this first step in the miracle of healing Maggie. Praise Him for getting her through these last 2 1/2 months with little problems. And Praise Him for what He will continue to do throughout treatment and in the many, many years ahead. I KNOW He has wonderful plans for Maggie and I KNOW that they do not include premature death. Maggie is an amazing baby and is going to be an amazing woman, doing wonderful things in her lifetime for the glory of the Lord. I hope each of you will stick around after this little detour is finished and observe the miracle that she is. After all, you are all a part of her life now and we feel comfort in knowing that you are all with us each step of the way. Thank you all for keeping us in your thoughts and prayers. We would not be able to do this without knowing that we have a support system circling the earth and that prayers are continually being lifted up in Maggie's behalf.
When Dr. French made his rounds this morning, I made sure to ask him the questions that circulated in my head all night. When he entered, I immediately told him I had a couple of questions. He bantered ever so briefly about the word "couple" (I think we are getting the reputation of asking a lot of questions and if any of you know our doctor, he is one that is not normally the bantering type so this was a pleasant surprise as well). Anyways, I shared with him my concerns about the 1% leukemic blast cells shown in her marrow. He immediately stopped me and reiterated that to be in remission the marrow should have less than 5% blast cells and Maggie had less than 1%--meaning hardly detectable (and he also shared that depending on who is reading the slide, others might consider it to be 0%). He also explained to me that blast cells do not necessarily mean leukemic cells. Throughout this experience, whenever I hear the word blasts, I immediately thought leukemia because Maggie's marrow was filled with 80% leukemic blasts when first tested. The word blast means immature cells that eventually become mature cells in the body as long as they are not compromised by leukemia.
Though I might not be in full understanding of the process of cell division and birth (and though I might only be confusing others), what I want to share with you all during this post is that I feel more at ease and joyful that my baby is now in remission. I should have felt all the joy in the world yesterday, but I have had my guard up for so long that it requires continual reassurance that everything is going to work out, and Dr. French provided some of that. I have also been reading many different stories of children plagued with cancer and relapsing or having complications. It scares me more than anything to know that this is always a high possibility. I ache for every mother out there pleading with God not to take their baby, as I am also one of them. When you give birth to a child, you don't ever expect to go through something like this. I continue to ask Andy if there is anything worse than what we are going through, and though I am sure there is, we haven't come up with anything.
I appreciate you all listening to my thoughts. Normally I don't want to use Maggie's site to share things like this because I view this site as Maggie's--sharing what she is going through and not what we, as her parents are experiencing. I wanted you all to know that I do thank God for the news of remission because I don't think the post from yesterday demonstrated this. Though I still wrestle with God with questions of "why us" and sometimes grow angry at what Maggie is going through, I am slowly coming to grips with our new life. As I have shared with Andy before, if I knew that the end result would be a cured Maggie, I would be able to go through this experience with less negativity, worry, etc.. But of course, that is not the way life is.
So, (yes Whitney, get to the point of what you are trying to say)-- Yes, Praise the Lord for this first step in the miracle of healing Maggie. Praise Him for getting her through these last 2 1/2 months with little problems. And Praise Him for what He will continue to do throughout treatment and in the many, many years ahead. I KNOW He has wonderful plans for Maggie and I KNOW that they do not include premature death. Maggie is an amazing baby and is going to be an amazing woman, doing wonderful things in her lifetime for the glory of the Lord. I hope each of you will stick around after this little detour is finished and observe the miracle that she is. After all, you are all a part of her life now and we feel comfort in knowing that you are all with us each step of the way. Thank you all for keeping us in your thoughts and prayers. We would not be able to do this without knowing that we have a support system circling the earth and that prayers are continually being lifted up in Maggie's behalf.
Remission
(This picture was taken while Maggie experimented with spaghetti.)Maggie is officially in REMISSION! Dr. French came in moments ago to let us know that her bone marrow showed that she has less than 1% leukemic blasts in her body. The definition of remission is that her counts have recovered and that the bone marrow shows less than 5% leukemic blasts. Now of course the goal is to keep Maggie in remission. Dr. French said yesterday that they will not do another bone marrow aspirate until the end of treatment (unless something abnormal shows up in her blood tests or other abnormal signs).
With the bone marrow aspirate yesterday, Maggie underwent a spinal with chemo, and two different chemo drugs (daunorubicin, vincristine). She tolerated these fairly well, with the exception of some pain off and on throughout the day and evening. With her being a baby, we continue to struggle to determine where the pain is originating.
Today Maggie has received more chemo and an IVIG transfusion (antibodies to help her immune system). She and Andy are napping right now. I worked this morning which caused some distress for both of them as Maggie doesn't like to take bottles and holds out until I return.
We have seen some of the effects of the chemo drugs used this time. Her eyes are reddened and we have to work on getting smiles out of her. Thankfully she has not shown signs of nausea thus far. We have two more days of chemo- Cytoxan and the rescue drug Mesna. We will most likely be discharged on Monday.
Pray that Maggie will not feel the effects of chemo, that she will not get mouth sores or any infections. Also pray that Maggie will stay in remission for the rest of her long life. Thank you all for your continued prayers and support. We feel very loved by those we know and those we know only through this technology.
Wednesday, September 17, 2008
We're still here
I have had several contact us wondering what is going on in our life-how Maggie is doing. We are here. Hurricane Ike affected us a bit. It came in on Sunday with 60-70 mph winds. In its frenzy, it pulled one of our trees right out of the ground. Thankfully it just grazed our house, taking with it the gutter and our satelite/telephone wires. We were then without power from around 3:00 pm on Sunday until this morning around 10:00 am. With this we didn't have internet access and if it wasn't for a friend, we would have a freezer full of spoiled meat.
We visited the clinic on Monday to find out that we are scheduled to go to the hospital tomorrow for a bone marrow aspiration, spinal with chemo, and start our next round of inpatient chemotherapy. This next round is similar to the first chemotherapy Maggie had when she was diagnosed. It will consist of 3 different chemo drugs spaced in a 4 day period. These drugs will again wipe out her counts. The last set of drugs did the same, but surprising to us, she rebounded very quickly.
The other major step in this treatment plan is that with the bone marrow aspiration, we will find whether Maggie is in remission or not. The doctor's assume that she will be there (as 90-95% of children are in remission after the first round of chemo), and for that reason, they are continuing with the treatment protocol before even getting results. The protocol consists of the entire treatment that Maggie has (endured) thus far, all over again, with some minor adjustments. Though I was saddened to see that Maggie will be on steroids for 21 days again, I can't imagine that our experiences this time around will be similar to the last time. We were in the hospital for 2 1/2 weeks the first round of treatment with mouth sores and then broviac issues. I hope and pray that this time around we will not have any hiccups and we will stay on course with no breaks.
So, plan to hear from us sometime soon with wonderful news that Maggie is in remission. We pray that each of you have weathered the storm that you might have faced with hurricane Ike, or storms within your own life. Thank you all for your continued prayers for Maggie and ongoing support.
We visited the clinic on Monday to find out that we are scheduled to go to the hospital tomorrow for a bone marrow aspiration, spinal with chemo, and start our next round of inpatient chemotherapy. This next round is similar to the first chemotherapy Maggie had when she was diagnosed. It will consist of 3 different chemo drugs spaced in a 4 day period. These drugs will again wipe out her counts. The last set of drugs did the same, but surprising to us, she rebounded very quickly.
The other major step in this treatment plan is that with the bone marrow aspiration, we will find whether Maggie is in remission or not. The doctor's assume that she will be there (as 90-95% of children are in remission after the first round of chemo), and for that reason, they are continuing with the treatment protocol before even getting results. The protocol consists of the entire treatment that Maggie has (endured) thus far, all over again, with some minor adjustments. Though I was saddened to see that Maggie will be on steroids for 21 days again, I can't imagine that our experiences this time around will be similar to the last time. We were in the hospital for 2 1/2 weeks the first round of treatment with mouth sores and then broviac issues. I hope and pray that this time around we will not have any hiccups and we will stay on course with no breaks.
So, plan to hear from us sometime soon with wonderful news that Maggie is in remission. We pray that each of you have weathered the storm that you might have faced with hurricane Ike, or storms within your own life. Thank you all for your continued prayers for Maggie and ongoing support.
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