I shared with the nurse before we went to bed last night that I felt like I was living the movie "Groundhog Day." Since we have been in the hospital, each day seems the same. But that isn't the only reason--In the movie, the main character doesn't want to go to sleep at night for fear of living the same day when he awakes. I have a fear that when we go to sleep, we are going to wake to something horrible occurring in the middle of the night, which has occurred since Saturday. Well, this again was the case last night. We got to sleep quite late and Maggie woke up at 1:00am to feed, which she did for about an hour. When Andy went to put her back in bed, I noticed that her diaper had leaked on our bed. After checking Maggie over, we found that her central IV spot was seeping blood to the amount that it had soaked her dressing, her shirt, and when I held her, my shirt. After the room filled with nurses, they took off her dressing and found that it was seeping blood and fluid, but especially when Maggie cried, the line was pulsating. They called for the surgery resident who came to look and said that the line had not changed from when the surgeon had put it in, but scheduled an x-ray to determine whether it had moved in her chest. They brought an x-ray machine up (how convenient is that in the middle of the night?) and we found when we woke up this morning that the lines were still in place. The resident surgeon is not quite sure what is causing the leaks, perhaps the catheter is rubbing against a capilary causing irritation & bleeding, or her veins are worn out from the different catheters placed and they are not sealing at the entry site. Either way, her IV site on her left side has caused for drama almost each night this week.
After talking to the oncologist this morning, they have decided to place her permanent broviac in either tomorrow or Saturday. He doesn't want to do it that soon, but surgery has recommended it due to the problems Maggie has had on her left side. Like we have said, he'd like to wait for her ANC to come up, but it is taking longer than he thought it would--it actually dropped back down to 60 today. He is upping her Neupogen to 2 doses a day (this drug helps the bone marrow cells to rejuvinate), hoping this will help her counts to recover more quickly.
Hopefully today we will be able to have a quiet day with a happy, playful baby. We pray that her line will hold up for a couple more days, that her counts will recover, that she will get over her cough from surgery, and she will stay infection and pain free.
Thursday, July 31, 2008
Wednesday, July 30, 2008
Chubby Cheekers
We finally got our camera today so that we could take some pictures and it was a good day to do so. Other than the mishap this morning, Maggie had a fairly good day. She had a platelet transfusion today (her platelets were 5,000) that ended up giving her a fever, but we found out tonight that her platelets are up to 184,000 (which is similar to a healthy person). So her body really responded well (other than the fever) to the transfusion. Our doctor suggested putting Maggie on the floor tonight to play and crawl around (though she is not yet crawling). These are pictures of her playing, which she did for about 10 minutes. She smiled quite a bit today (though it appears to be quite difficult with the extra large chubby cheeks she has due to the prednisone). We are so happy to be getting our little girl back.
Equipment failure
Maggie awoke again this morning at 5:15am to a wet bed. After determining that she had not wet her bed, we found that her temporary IV was again leaking out. They checked the line and could not get any blood return. They checked her second line and were able to get a blood return so they switched her IV nutrients & morphine to the one that worked. Again, this made us sick as this is what happened to us on Friday after her surgery.
At 7:00am the IV therapist came in to check on the lines and sure enough, the saline was dripping out and onto her skin. The second line was working fine. They scheduled another dye study to determine where the leak is and surprisingly, they couldn't find anything wrong, on either line. We can't quite figure out what is happening--why it is leaking onto her skin yet not showing any problems on the x-ray. They are still not able to get a blood return on the one.
Our doctor came to talk with us about the situation. He has decided to delay another surgery. He is going to try to wean her off the morphine & take her off of the TPN (IV nutrition). He is only going to do the necessary antibiotics, hoping that the chemicals going through her might minimize any more problems to the line. Her ANC is coming up (finally) and his hope is that by the end of the week it might be high enough so that she might be able to go to surgery to get her permanent broviac placed on her right side (and performed by a different surgeon).
At 7:00am the IV therapist came in to check on the lines and sure enough, the saline was dripping out and onto her skin. The second line was working fine. They scheduled another dye study to determine where the leak is and surprisingly, they couldn't find anything wrong, on either line. We can't quite figure out what is happening--why it is leaking onto her skin yet not showing any problems on the x-ray. They are still not able to get a blood return on the one.
Our doctor came to talk with us about the situation. He has decided to delay another surgery. He is going to try to wean her off the morphine & take her off of the TPN (IV nutrition). He is only going to do the necessary antibiotics, hoping that the chemicals going through her might minimize any more problems to the line. Her ANC is coming up (finally) and his hope is that by the end of the week it might be high enough so that she might be able to go to surgery to get her permanent broviac placed on her right side (and performed by a different surgeon).
Tuesday, July 29, 2008
Update
Today's test results were good--we shouldn't have to worry about Pancreatitis. Both lab work from this morning as well as the ultrasound indicate that her Pancreas is functioning fine. So that is nice. Maggie's counts still have not recovered at all, so we're waiting for that before we can think about going home or continuing chemo.
Maggie had a low grade fever early this afternoon and hasn't looked too comfortable. She has slept a lot (recovering from some rough nights). Her fever hasn't gotten worse in 4+ hours, so that is good. Until the fever gets to 101, the staff doesn't do anything to treat it, nor do they get too concerned. Anytime she is above normal we have to wonder what is going on though, which is never easy. She has had a little bit of diarrhea, so they're looking into whether or not that is related to her pain. She's still on morphine and a handful of antibiotics as well as her prednisone (only for a couple more days) and neupogen (drug that helps her blood counts to recover). Her hair is no longer falling out, so we expect that she'll look like this until the next round of chemo can start. So far her hair has gotten thinner and she has a bald spot on the back of her head from lying down. Since the last round of chemo isn't knocking out her hair, we are assuming that the other effects are done and that the cell growth in her blood will happen soon. That is our hope.
Otherwise, we are just waiting around. Not much has happened today, and if Maggie were feeling better it probably would have been a pretty good day. We pray for continued safety from infection and for relief from pain. Also, we are hopeful that her ANC and white blood counts would recover so that she'd be more protected from infections and able to continue treatment.
That's all for now. Thanks.
Maggie had a low grade fever early this afternoon and hasn't looked too comfortable. She has slept a lot (recovering from some rough nights). Her fever hasn't gotten worse in 4+ hours, so that is good. Until the fever gets to 101, the staff doesn't do anything to treat it, nor do they get too concerned. Anytime she is above normal we have to wonder what is going on though, which is never easy. She has had a little bit of diarrhea, so they're looking into whether or not that is related to her pain. She's still on morphine and a handful of antibiotics as well as her prednisone (only for a couple more days) and neupogen (drug that helps her blood counts to recover). Her hair is no longer falling out, so we expect that she'll look like this until the next round of chemo can start. So far her hair has gotten thinner and she has a bald spot on the back of her head from lying down. Since the last round of chemo isn't knocking out her hair, we are assuming that the other effects are done and that the cell growth in her blood will happen soon. That is our hope.
Otherwise, we are just waiting around. Not much has happened today, and if Maggie were feeling better it probably would have been a pretty good day. We pray for continued safety from infection and for relief from pain. Also, we are hopeful that her ANC and white blood counts would recover so that she'd be more protected from infections and able to continue treatment.
That's all for now. Thanks.
Monday, July 28, 2008
July 28 update
Well, here we are again-- reminiscing on the day. The day began at midnight when after not being able to console Maggie's whimpers, the resident doctor decided to give her a dose of .2 miligrams of Morphine. This caused her to calm enough to fall asleep. At 3:30, she awoke to feed and then was again unconsolable. They gave her some Benadryl, which is normally our lifesavor, but it was unsuccessful. She cried in discomfort until finally they decided to put her back on her morphine pump. She finally calmed down enough to sleep around 9:00 am. She then slept until close to 2:00 when she was woken by the doctor. Yet again, we both went on about 3 hours of sleep last night.
We are having difficulty trying to figure out what is causing her pain. Andy said in an earlier post that this is one of the hardest things and I have to reiterate that. We feel helpless when she is crying and nothing will calm her. Right now we aren't sure if her mouth sores are coming back, she has post-surgery pain, bone pain due to the neupogen, teething pain (she has to get teeth someday, right?), or a new consideration--pancreatitis. Maggie's triglycerides have been highly elevated for several days. The gastroenterologist met with us and thinks that there might be elevations due to one of her chemo drugs and steroid. She is having an ultrasound on her pancreas and liver tomorrow morning at 6:30 am. She again cannot have food for 4 hours prior to the procedure. Thankfully this time they have scheduled it very early in the morning. Hopefully she'll sleep well and we don't have to comfort her from 2:30am until the procedure. We have had 2 nights of little sleep and I don't know how much more we can manage. I feel like I have a newborn all over again (and I'd much rather go back to that day versus where we are now).
The doctor's discussed Maggie's situation today and they have agreed to postpone her chemotherapy treatment until her counts come up. There had been some discussion that perhaps they would push on regardless. However, they have decided that it would be more harmful for Maggie if they were to give her chemo, for risk of infection because her counts are 0. I voiced my fear with the doctor that I didn't want the cancer to come back if we were to wait. He assured me that because Maggie responded so well to treatment and her marrow didn't show any cancer cells, there's no risk of the cancer coming back this soon. Therefore, we can wait for Maggie's body to tell us that she is recovering from the chemo.
So, with this we pray that Maggie's counts will recover, that we will be able to figure out what is causing her pain and be able to treat it, that she won't have pancreatitis (we have been told by the nurse that the way to heal this is to not eat for a week, instead she would receive all nutrition through IV. This would be torture to Maggie, as breastfeeding has been her comfort), and that she will stay free from fevers and infection. On the bright side, we were very pleased to see Maggie briefly smile several times today. Those moments are so precious right now. When she recovers a bit before the next chemo, we should see her being a bit more happy again.
Thanks, and goodnight.
We are having difficulty trying to figure out what is causing her pain. Andy said in an earlier post that this is one of the hardest things and I have to reiterate that. We feel helpless when she is crying and nothing will calm her. Right now we aren't sure if her mouth sores are coming back, she has post-surgery pain, bone pain due to the neupogen, teething pain (she has to get teeth someday, right?), or a new consideration--pancreatitis. Maggie's triglycerides have been highly elevated for several days. The gastroenterologist met with us and thinks that there might be elevations due to one of her chemo drugs and steroid. She is having an ultrasound on her pancreas and liver tomorrow morning at 6:30 am. She again cannot have food for 4 hours prior to the procedure. Thankfully this time they have scheduled it very early in the morning. Hopefully she'll sleep well and we don't have to comfort her from 2:30am until the procedure. We have had 2 nights of little sleep and I don't know how much more we can manage. I feel like I have a newborn all over again (and I'd much rather go back to that day versus where we are now).
The doctor's discussed Maggie's situation today and they have agreed to postpone her chemotherapy treatment until her counts come up. There had been some discussion that perhaps they would push on regardless. However, they have decided that it would be more harmful for Maggie if they were to give her chemo, for risk of infection because her counts are 0. I voiced my fear with the doctor that I didn't want the cancer to come back if we were to wait. He assured me that because Maggie responded so well to treatment and her marrow didn't show any cancer cells, there's no risk of the cancer coming back this soon. Therefore, we can wait for Maggie's body to tell us that she is recovering from the chemo.
So, with this we pray that Maggie's counts will recover, that we will be able to figure out what is causing her pain and be able to treat it, that she won't have pancreatitis (we have been told by the nurse that the way to heal this is to not eat for a week, instead she would receive all nutrition through IV. This would be torture to Maggie, as breastfeeding has been her comfort), and that she will stay free from fevers and infection. On the bright side, we were very pleased to see Maggie briefly smile several times today. Those moments are so precious right now. When she recovers a bit before the next chemo, we should see her being a bit more happy again.
Thanks, and goodnight.
Sunday, July 27, 2008
Evening update
This morning's procedure went much better than the same one on Friday. At this point in time, the new Central temporary IV is placed and fully functioning. We are so grateful for this.
Maggie's been off of her morphine drip for the last 12-14 hours--she was off of it when she lost her IV access during the night, and the doctors wanted to try to leave her off. Unfortunately, she seemed to be uncomfortable much of the afternoon and it is so hard to pinpoint why. It could be achiness from her new IV line, or it could still be mouth sores. We don't know exactly what it is, but she received a single dose of morphine this afternoon, and again some Benadryl to make her comfortable. Our hope is that we can keep her off of the morphine drip, but that is probably the next step if Maggie continues to not feel well.
The oncologists are making final decisions about continuing chemo. One option is to start tomorrow morning--despite her body not being fully recovered from the last several rounds. There is also some mention of the option to wait for her ANC (Absolute Neutrophil Count) to return to 500--a safer level of immune ability--before giving her the Methotrexate chemo. Also, they are discussing how comfortable they will be in letting us go home while Maggie's counts are low. Again, there are two schools of thought. For higher risk cases, some prefer to keep patients in the hospital until counts are at a more safe level. Or, we could go home while Maggie's counts grow. At this point, Maggie's ANC has been at zero for several weeks and we haven't seen any growth at all.
As we look ahead and learn how long (and where) we will wait for chemo (12 hours? Or 3 weeks?) we are glad that her IV access seems to be in perfect condition right now. Please continue to keep Maggie in your prayers. Specifically, that she would not experience pain, not get new infections, experience some happiness and act like herself, and that the doctors and Whitney and I would be able to pinpoint Maggie's pains, discomforts, etc. so that they can be treated appropriately.
Thanks.
Maggie's been off of her morphine drip for the last 12-14 hours--she was off of it when she lost her IV access during the night, and the doctors wanted to try to leave her off. Unfortunately, she seemed to be uncomfortable much of the afternoon and it is so hard to pinpoint why. It could be achiness from her new IV line, or it could still be mouth sores. We don't know exactly what it is, but she received a single dose of morphine this afternoon, and again some Benadryl to make her comfortable. Our hope is that we can keep her off of the morphine drip, but that is probably the next step if Maggie continues to not feel well.
The oncologists are making final decisions about continuing chemo. One option is to start tomorrow morning--despite her body not being fully recovered from the last several rounds. There is also some mention of the option to wait for her ANC (Absolute Neutrophil Count) to return to 500--a safer level of immune ability--before giving her the Methotrexate chemo. Also, they are discussing how comfortable they will be in letting us go home while Maggie's counts are low. Again, there are two schools of thought. For higher risk cases, some prefer to keep patients in the hospital until counts are at a more safe level. Or, we could go home while Maggie's counts grow. At this point, Maggie's ANC has been at zero for several weeks and we haven't seen any growth at all.
As we look ahead and learn how long (and where) we will wait for chemo (12 hours? Or 3 weeks?) we are glad that her IV access seems to be in perfect condition right now. Please continue to keep Maggie in your prayers. Specifically, that she would not experience pain, not get new infections, experience some happiness and act like herself, and that the doctors and Whitney and I would be able to pinpoint Maggie's pains, discomforts, etc. so that they can be treated appropriately.
Thanks.
Can you believe...another hiccup
I write this much earlier than I wish. We have yet again had another setback. Maggie's periferal IV has fallen out. She awoke around 2:45 am and being that she was not allowed to eat after 3:00 am, I fed her until around 3:25. Andy set her back in her crib only to have her wake up and begin crying. After rocking her for some time, Andy tried several attempts to get her back in her crib. After a dirty diaper, I picked her up to calm her. I then gave her to Andy and when doing so I noticed blood on the floor. Her IV was dripping blood. I ran for the nurse and their team came in to try to salvage Maggie's IV. It ended up falling out of her vein and there was no way to keep it intact so they pulled it. With that they scheduled surgery for 8:30 am and blood to be drawn, most likely through a prick in the heel (which Maggie will scream) around 6:00 am. So, needless to say our night of sleep is finished. We will take turns walking Maggie and rocking her as to keep her calm and asleep. Benadryl (the drug we very often rely on to relax and get Maggie to sleep) is out because they would have to give it orally and she is not allowed to have anything in her stomach. They will plan to give Maggie more platelets during surgery (it was originally scheduled for 6:00 am through her periferal IV).
Please pray that the surgery and placement of the temporary line with be successful and that it will last until the new broviac is inserted.
Please pray that the surgery and placement of the temporary line with be successful and that it will last until the new broviac is inserted.
Saturday, July 26, 2008
Settled for the night
Just a quick final update: the one attempt to place the peripheral IV was successful. The IV is in place in her ankle and that will get us through the night. Surgery is scheduled for sometime tomorrow morning to place the new temporary IV, again in the left side of her chest. Maggie is settled down and appears to be very ready for a night of rest. If the blood cultures that were drawn this morning are negative and the IV is placed successfully tomorrow, the methotrexate chemo should commence on Monday morning.
The way things have gone lately, we probably shouldn't get that far ahead of ourselves. Our focus and prayers are for a restful night and a successful surgery placing the IV (also that it will last as long as we need it to).
Goodnight.
The way things have gone lately, we probably shouldn't get that far ahead of ourselves. Our focus and prayers are for a restful night and a successful surgery placing the IV (also that it will last as long as we need it to).
Goodnight.
oops...again.
I (Andy) came back from a movie with brother-in-law Casey this afternoon and held Maggie for a short time--putting her to sleep. As I laid her down I walked away from the crib to find that my arm was soaked. We let the staff know, IV therapy came and found that the "good" lumen was now leaking as well. Joy.
As we speak, the staff is making final decisions about what to do. They are going to try to put a peripheral IV in soon to get her through the night before having surgery again in the morning to put a new temporary line in. However, Maggie has a history of being very difficult to give IVs--in fact, the IV therapy nurse remembered this right away. Also, Whitney didn't want to see them try to give her the IV and fail. So, the plan is to try one time only to get a peripheral IV in her arm. If it doesn't work, we'll stop feeding Maggie, the on-call surgeon will be called in, and surgery will take place tonight to replace the "swiss cheese" temporary IV that she had surgically placed yesterday. More joy.
All sarcasm aside, we are fighting serious frustration here. At the end of the day, if it goes smoothly from here on out, then we'll be happy. It is rough to have such an eventful last couple of days--chemo. should start in a couple of days and we're weary and worn already. Pray for success and event-free procedures from here on out. More updates likely to come tonight.
As we speak, the staff is making final decisions about what to do. They are going to try to put a peripheral IV in soon to get her through the night before having surgery again in the morning to put a new temporary line in. However, Maggie has a history of being very difficult to give IVs--in fact, the IV therapy nurse remembered this right away. Also, Whitney didn't want to see them try to give her the IV and fail. So, the plan is to try one time only to get a peripheral IV in her arm. If it doesn't work, we'll stop feeding Maggie, the on-call surgeon will be called in, and surgery will take place tonight to replace the "swiss cheese" temporary IV that she had surgically placed yesterday. More joy.
All sarcasm aside, we are fighting serious frustration here. At the end of the day, if it goes smoothly from here on out, then we'll be happy. It is rough to have such an eventful last couple of days--chemo. should start in a couple of days and we're weary and worn already. Pray for success and event-free procedures from here on out. More updates likely to come tonight.
Another hiccup
When Maggie came back from surgery last night at 6:30 we noticed that her dressing was wet around the central IV. They paged IV therapy to change the dressing. IV therapy came between 9-10 pm and saw that the dressing was saturated with her nutrients that she has been receiving through IV. When flushing the one lumin (she has a double lumin or 2 tubes coming out of the site) with saline, we saw that the saline was dropping down Maggie's chest. This means that either the tubing didn't go far enough into Maggie's vein and it was leaking some out or there is something wrong with the tubing. This made us both sick knowing that there might be a possibility that Maggie will have to go back to surgery again to get it replaced. The other lumin worked fine and it is currently giving Maggie all of her antibiotics and nutrients she needs.
We took Maggie this afternoon to have dye put into her lumen to determine the problem. They found that she has a slit in her lumen. This most likely occurred during surgery. The doctor has said that he would like to wait until Monday to decide what to do. During this time several things need to happen. 1) Maggie is slowly being weaned off of the morphine. They want to see whether she can manage the pain on her own (though the anestheologist said he didn't see any mouth sores in her esophagus during her surgery). 2) They want to see if Maggie will pick up eating on her own, both solids and breastmilk. If so, they will look at stopping her nutrients through the IV. If these two things happen, the doctor might try to hold off on replacing the central IV and only use the single lumen. Chemotherapy would then be given through the single lumen and perhaps begin on Monday. If these two things do not occur, they will look into replacing her temporary central IV.
Andy and I are pretty frustrated with the situation. We are tired of continually getting bombarded with these hits and would like to receive good news again. Tomorrow we will have been in the hospital for a week. We are tired and would like to go home again. We have spent 6 days at home in the month of July.
Please pray that Maggie will not have to go through surgery to replace the temporary IV, that they might be able to begin chemotherapy, she will respond well, and we will be able to go home soon.
We took Maggie this afternoon to have dye put into her lumen to determine the problem. They found that she has a slit in her lumen. This most likely occurred during surgery. The doctor has said that he would like to wait until Monday to decide what to do. During this time several things need to happen. 1) Maggie is slowly being weaned off of the morphine. They want to see whether she can manage the pain on her own (though the anestheologist said he didn't see any mouth sores in her esophagus during her surgery). 2) They want to see if Maggie will pick up eating on her own, both solids and breastmilk. If so, they will look at stopping her nutrients through the IV. If these two things happen, the doctor might try to hold off on replacing the central IV and only use the single lumen. Chemotherapy would then be given through the single lumen and perhaps begin on Monday. If these two things do not occur, they will look into replacing her temporary central IV.
Andy and I are pretty frustrated with the situation. We are tired of continually getting bombarded with these hits and would like to receive good news again. Tomorrow we will have been in the hospital for a week. We are tired and would like to go home again. We have spent 6 days at home in the month of July.
Please pray that Maggie will not have to go through surgery to replace the temporary IV, that they might be able to begin chemotherapy, she will respond well, and we will be able to go home soon.
Friday, July 25, 2008
Out of Surgery
Maggie is out of surgery and everything went fine. She's feeling yucky from the anasthesia but they're going to try to give her some anti-nausea meds to help out. Also, she'll get a new dressing over her incision and IV tonight--she'll likely scream for the 20 or so minutes while that is done. Once we get through that, she'll be done with the hassles tonight. Hopefully she'll be in bed and sleeping soon and will feel a little better in the morning.
Andy
Andy
Thursday, July 24, 2008
Chemotherapy postponed
We heard from the doctor this evening that they have decided to postpone Maggie's Methotrexate chemotherapy tomorrow. They would like to wait until she no longer has the bacteria in her system. To determine this they need several days for her blood cultures to "grow." We think that they might get back on track early next week. It looks like we won't be returning home anytime soon. She will have her spinal tap with chemo tomorrow as scheduled, however.
On a brighter note, Maggie acted more herself tonight. She smiled several times and has begun to babble again. It is so wonderful to see this and see remnants of our little girl. We think that the blood transfusion she had earlier in the day might have perked her up. Whatever it might be, we'll take it. She also ate almost 2 servings of pears tonight. Another good sign that perhaps the mouth sores are beginning to heal.
Pray for Maggie tomorrow and especially around 4:00 when she goes into surgery to replace her broviac with a temporary central IV.
On a brighter note, Maggie acted more herself tonight. She smiled several times and has begun to babble again. It is so wonderful to see this and see remnants of our little girl. We think that the blood transfusion she had earlier in the day might have perked her up. Whatever it might be, we'll take it. She also ate almost 2 servings of pears tonight. Another good sign that perhaps the mouth sores are beginning to heal.
Pray for Maggie tomorrow and especially around 4:00 when she goes into surgery to replace her broviac with a temporary central IV.
July 24 Update
We have not posted in several days. There have been some updates in the last few days as well as this morning. We are still in the hospital dealing with mouth sores. Maggie has not been able to manage the pain. On Tuesday, they took her off morphine to determine if her agitation was due to that or if she was still in pain from the mouth sores. After about an hour we knew she really needed the morphine as she was very upset. Tuesday evening she spiked a fever. When she gets a fever, they collect blood cultures to determine what might be causing it. Maggie was scheduled to have an IVIG (antibodies) transfusion that evening. This was delayed as they took care of the fever (and also cleaned up a chemotherapy spill in the playroom from another patient). They were able to control her fever with tylenol and began her transfusion at 1:15 in the morning. During the transfusion she was unable to have any morphine-- which caused another sleepless night. The transfusion lasted 4 hours and her vitals were checked every 15 minutes for most of the time. Maggie has always been a light sleeper and so this only added to it and caused us to be up comforting her all night. Finally at 5:00 a.m. the nurse, who was so kind, saw Maggie's pain and our frustration and called the resident doctor asking that she have a burst of morphine. This finally calmed her down and we were able to sleep until the doctor woke her up at 10:30 a.m.
We received word last night that the blood cultures that they took when Maggie spiked a fever showed that she had a bacteria that they believe to be the same E.Coli she had with her first fever spike several weeks ago. They determined this morning that the antibiotics she was on for the E.Coli did not get rid of it entirely and therefore she is going to have to get a replacement broviac (this is her IV that is directly in her chest and typically lasts as long as the treatment) due to infection being in one of the lines. This has been scheduled for tomorrow at 4:00 pm, which means that Maggie will not be able to eat from noon on. This has proved to be quite tortuous for Maggie as she still breastfeeds and gets a lot of comfort from this. She was put on an IV for nutrients yesterday to replace that which she is not getting through her solid foods (she stopped eating solid food when they turned the morphine off on Tuesday). So, she will essentially not be starving as she has been in the past with sedation procedures, but it is still difficult. They will be giving her a temporary central IV in the other side of her chest and will wait until the infection clears before putting the new broviac in place. She is scheduled to have a spinal tap tomorrow in which they will be inserting chemo into her spinal fluid, as well as another heavy treatment of chemotherapy via her central line. We don't know for sure that they will be doing the spinal tap due to the infection in her body. The doctor is deciding on it today. Maggie is also currently getting a blood transfusion and another platelet transfusion in order to keep those counts high.
The chemotherapy treatment she is to get tomorrow through her central line, Methotrexate IV, is the reason why we were originally going to be spending several days in the hospital. They need to monitor this drug in her body- basically put it in and then flush it out ASAP. She is to be on a cathater so they might monitor her levels. We have been told that they will most likely continue with the chemotherapy as planned tomorrow despite the issues with her infection.
As we continue praying, we pray for healing of the mouth sores in Maggie's mouth and throat. We are praying that her white blood count and ANC will recover (they are still at 0). We pray that the surgery on her broviac will be successful, the infection will go away, and that this will be the last time we have to replace it. We pray that we can get over this speed bump and return home soon-- and that Maggie will return to her happy, smiling self.
Thank you again for all of your words of encouragement and prayers for Maggie.
We received word last night that the blood cultures that they took when Maggie spiked a fever showed that she had a bacteria that they believe to be the same E.Coli she had with her first fever spike several weeks ago. They determined this morning that the antibiotics she was on for the E.Coli did not get rid of it entirely and therefore she is going to have to get a replacement broviac (this is her IV that is directly in her chest and typically lasts as long as the treatment) due to infection being in one of the lines. This has been scheduled for tomorrow at 4:00 pm, which means that Maggie will not be able to eat from noon on. This has proved to be quite tortuous for Maggie as she still breastfeeds and gets a lot of comfort from this. She was put on an IV for nutrients yesterday to replace that which she is not getting through her solid foods (she stopped eating solid food when they turned the morphine off on Tuesday). So, she will essentially not be starving as she has been in the past with sedation procedures, but it is still difficult. They will be giving her a temporary central IV in the other side of her chest and will wait until the infection clears before putting the new broviac in place. She is scheduled to have a spinal tap tomorrow in which they will be inserting chemo into her spinal fluid, as well as another heavy treatment of chemotherapy via her central line. We don't know for sure that they will be doing the spinal tap due to the infection in her body. The doctor is deciding on it today. Maggie is also currently getting a blood transfusion and another platelet transfusion in order to keep those counts high.
The chemotherapy treatment she is to get tomorrow through her central line, Methotrexate IV, is the reason why we were originally going to be spending several days in the hospital. They need to monitor this drug in her body- basically put it in and then flush it out ASAP. She is to be on a cathater so they might monitor her levels. We have been told that they will most likely continue with the chemotherapy as planned tomorrow despite the issues with her infection.
As we continue praying, we pray for healing of the mouth sores in Maggie's mouth and throat. We are praying that her white blood count and ANC will recover (they are still at 0). We pray that the surgery on her broviac will be successful, the infection will go away, and that this will be the last time we have to replace it. We pray that we can get over this speed bump and return home soon-- and that Maggie will return to her happy, smiling self.
Thank you again for all of your words of encouragement and prayers for Maggie.
Monday, July 21, 2008
Back again...but some great news followed...
We were home for 6 days before needing to return to the hospital on Tuesday, July 15th. Maggie developed very painful mouth sores, a common side effect of the chemo. They treated her with Morphine and managed to get her to the point where they felt comfortable sending her home. Whereas she had been in excruciating pain, she healed quickly in the hospital and was ready to be sent home in the evening of Friday the 19th. She was scheduled to have another spinal tap that morning for some intrathecal chemo (chemo that is inserted into the spinal fluid) and one dose of chemo through her IV. While there, we were given news that genetic testing results were finally back--the bloodwork had been submitted during our first few days in the hospital. In infants with ALL, 80% have a gene rearrangement (they call it MLL+) that makes the disease relapse much more frequently, both in the short term (throughout treatment) and long term (several years beyond the time of diagnosis). Maggie, however, is one of the lucky ones who does not have the gene rearrangement (and is considered MLL-). This, though not a guarantee of her healing, gives a large boost to her overall prognosis. We were very grateful for this news and complete's our doctor's 3 prognostic indicators. They include age at diagnosis (either younger or older than 6 months) which is in Maggie's favor (she is 9 months old). Also, her white count at diagnosis was under 50,000--some have an initial count of several hundred thousand. Finally, the genetic test is in her favor. All good signs. Our doctor was quick to keep us from getting too excited--he was "encouraged" by the results, but is very aware that we are but 3 weeks into treatment and have a long, long road ahead. Nevertheless, MLL- is much better than the alternative.
We went home on Friday evening and had a decent night. On Saturday, Maggie gradually became a little bit fussy, then started to moan and whine quite a bit, and by nighttime, she was visibly uncomfortable. A quick call to our doctor at 9 pm suggested that we should give her an increased dose of Tylenol with Codeine, and that she was likely affected from the chemo from the previous day. The medicine brought Maggie 90 minutes of sleep before waking and crying until the next dose was due. Again, another 90 minutes of sleep before she again awoke in pain. By 8 AM, Maggie's jaw hung open, drool dripped to her shirt, and she was visibly in significant pain. We were admitted to the hospital by 10:00 AM, again with mouth sores, this time they were primarily in her thoat. Once again, Maggie is receiving a steady drip of morphine, and though she was still miserable most of yesterday (Sunday), she is slowly improving today.
We are scheduled to have a hospital stay this Friday through Tuesday or so for a heavy round of chemo, and now we'll wait to see if we can go home for a day or so before returning. We were told today that we'll likely stay all week and through the chemo treatment over the weekend. While we wait, we'll pray that Maggie's sores get better, that she can reduce and remove her pain medications, and that Maggie continues to be infection/illness-free. Also, that she'd feel more and more comfortable and able to eat her normal amount of food. Finally, that Maggie doesn't have to experience the amount of pain that she's had twice this week.
Thank you for your continued prayers. We are humbled by your support.
Andy
We went home on Friday evening and had a decent night. On Saturday, Maggie gradually became a little bit fussy, then started to moan and whine quite a bit, and by nighttime, she was visibly uncomfortable. A quick call to our doctor at 9 pm suggested that we should give her an increased dose of Tylenol with Codeine, and that she was likely affected from the chemo from the previous day. The medicine brought Maggie 90 minutes of sleep before waking and crying until the next dose was due. Again, another 90 minutes of sleep before she again awoke in pain. By 8 AM, Maggie's jaw hung open, drool dripped to her shirt, and she was visibly in significant pain. We were admitted to the hospital by 10:00 AM, again with mouth sores, this time they were primarily in her thoat. Once again, Maggie is receiving a steady drip of morphine, and though she was still miserable most of yesterday (Sunday), she is slowly improving today.
We are scheduled to have a hospital stay this Friday through Tuesday or so for a heavy round of chemo, and now we'll wait to see if we can go home for a day or so before returning. We were told today that we'll likely stay all week and through the chemo treatment over the weekend. While we wait, we'll pray that Maggie's sores get better, that she can reduce and remove her pain medications, and that Maggie continues to be infection/illness-free. Also, that she'd feel more and more comfortable and able to eat her normal amount of food. Finally, that Maggie doesn't have to experience the amount of pain that she's had twice this week.
Thank you for your continued prayers. We are humbled by your support.
Andy
Treatment begins
To start the treatment process, Maggie had a spinal puncture to draw spinal fluid and to insert some chemo into her spinal column. They found that the leukemia had not reached her nervous system as the spinal fluid was clean. That was a very good thing. Formal chemotherapy started the next day. . The plan was to give a series of intense chemotherapy treatments, a combination of different chemo. drugs and to check the progress after 7 days.
Some of the drugs made Maggie nauseous, others weren't as bad. In general, she didn't seem to feel too well throughout those days (of course). One of the challenges of treating leukemia with infants is the difficulty of communication. If she is crying or fussy, how do we know if she is sick to her stomach, if she is in pain (and where), if she is hungry, or sleepy?
At diagnosis, they found 80% leukemic cells in her bone marrow. After 7 days, she had more bone marrow drawn and they found that she responded very well to the chemo. In fact, there were no visible leukemic cells in the marrow at all. This was another good sign for her treatment and recovery. It also meant that we could plan to stay on the current treatment and not have to consider other, riskier treatment options.
From there, we went home with instructions to give her medicine through her IV. We had been in the hospital for 10 days, and hoped that we would be home for two and a half weeks until her next heavy dose of chemo. As a result of the chemo, her white blood counts and ANC (Absolute Neutrophil Count, an important immune system measure), were essentially at zero. We would have to be very careful to avoid illness--Maggie is vulnerable to infection when her counts are low. The goals for our time at home were to let her white blood counts recover, to avoid complications, and to rest and enjoy some "normalcy." Of course, our new normal is not quite what we were used to just days before.
The beginning
Well, I have decided to start a blog of Maggie's healing process. We have had many people suggest this and after thoughtful consideration, I've decided perhaps this is the easiest for all to communicate.
I'd like to start at the beginning explaining how we got to where we are today. We aren't sure the exact date, but sometime in early May, we found a red spot on Maggie's head. We didn't think much of it, but it eventually grew larger and another bump appeared. After the two bumps were there for several weeks, we decided to go to the pediatrician. On June 2, Andy took her to the doctor and was told that they looked like mosquito bites and that they didn't look at all suspicious. She said that at Maggie's 9 month check-up if they weren't gone, she'd look further into it. As the month went on, more spots appeared on her head. After talking to a colleague, she suggested seeing a dermatologist. We did so and he scheduled a biopsy ten days later. However, in the days leading to the scheduled biopsy, the spots began to spread on her scalp and a few appeared on her lower back. With our concern growing, we contacted the dermatologist and pediatrician and the biopsy was immediately moved to that afternoon. The original bump was biopsied, and by this time, the spots were no longer pink, but a brownish purple color. The dermatologist told us that it would be 5 days or so before he had results, but he suspected lymphoma, or possibly leukemia--not at all what we were expecting him to say--certainly not the way he delivered it. There was virtually no mention of any potential cause other than cancer. We were floored...and had to sit and wait for results.
The biopsy was on a Friday afternoon, and by noon on Monday there were preliminary results--some kind of abnormal lymphocite activity. Within a few hours Andy took Maggie to the pediatrician, an urgent care (for bloodwork), back to the pediatrician, and was on his way to Dayton Children's Medical Center with news that Maggie's White Blood Count was 44,000--there was an oncologist waiting to talk to us about a probable diagnosis of Leukemia. Whitney joined us from work just in time to talk to the nurse and doctor and to begin a journey that we never expected to travel.
We were admitted right away, Monday, June 30, 2008. Dr. French, Maggie's primary doctor, presumed it was Leukemia, but needed a few more days to get the final diagnosis pinned: Acute Lymphocytic Leukemia. Treatment options were quickly discussed before initiating treatment on Thursday, July 3 at Dayton Children's Medical Center. Formal Chemotherapy started soon thereafter and her two year treatment protocol was underway.
I'd like to start at the beginning explaining how we got to where we are today. We aren't sure the exact date, but sometime in early May, we found a red spot on Maggie's head. We didn't think much of it, but it eventually grew larger and another bump appeared. After the two bumps were there for several weeks, we decided to go to the pediatrician. On June 2, Andy took her to the doctor and was told that they looked like mosquito bites and that they didn't look at all suspicious. She said that at Maggie's 9 month check-up if they weren't gone, she'd look further into it. As the month went on, more spots appeared on her head. After talking to a colleague, she suggested seeing a dermatologist. We did so and he scheduled a biopsy ten days later. However, in the days leading to the scheduled biopsy, the spots began to spread on her scalp and a few appeared on her lower back. With our concern growing, we contacted the dermatologist and pediatrician and the biopsy was immediately moved to that afternoon. The original bump was biopsied, and by this time, the spots were no longer pink, but a brownish purple color. The dermatologist told us that it would be 5 days or so before he had results, but he suspected lymphoma, or possibly leukemia--not at all what we were expecting him to say--certainly not the way he delivered it. There was virtually no mention of any potential cause other than cancer. We were floored...and had to sit and wait for results.
The biopsy was on a Friday afternoon, and by noon on Monday there were preliminary results--some kind of abnormal lymphocite activity. Within a few hours Andy took Maggie to the pediatrician, an urgent care (for bloodwork), back to the pediatrician, and was on his way to Dayton Children's Medical Center with news that Maggie's White Blood Count was 44,000--there was an oncologist waiting to talk to us about a probable diagnosis of Leukemia. Whitney joined us from work just in time to talk to the nurse and doctor and to begin a journey that we never expected to travel.
We were admitted right away, Monday, June 30, 2008. Dr. French, Maggie's primary doctor, presumed it was Leukemia, but needed a few more days to get the final diagnosis pinned: Acute Lymphocytic Leukemia. Treatment options were quickly discussed before initiating treatment on Thursday, July 3 at Dayton Children's Medical Center. Formal Chemotherapy started soon thereafter and her two year treatment protocol was underway.
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