Hi all,
We've been home since Sunday evening--Maggie's been a joy. We're trying to find reliable ways to get her to take one of her oral meds that she has been throwing up. Other than that, we're thrilled with how Maggie is doing. We're now at the stage where her counts will be dropping as the chemo hits its peak effect, than waiting for the counts to recover. The key is that her healthy cells will recover and the cancer won't.
Our main purpose for posting tonight is to ask for your prayers for Liam Fisher and his family. Liam is another infant with leukemia, in South Carolina. He relapsed in July and is going through a lot. Read here:
http://www.caringbridge.org/visit/liamfisher
Thanks. Our prayers are out to Liam, Katie-Belle, those on our floor in Dayton, and to all children fighting cancer.
Wednesday, September 10, 2008
Sunday, September 7, 2008
Racing to Save Lives: Team in Training
A college friend, Katie (Gwirtz) Moyer, wrote me an email a couple weeks ago sharing that she would like to help support us by raising money to support The Leukemia & Lymphoma Society's Team in Training. This group raises funds to help stop different blood cancers. Katie will be running a marathon to support Maggie and others who are facing cancer. The website is: http://pages.teamintraining.org/coh/wdw09/kmoyer. If you would like to help support her in raising funds for this cause, please go to her website. Thank you so much and thank you Katie for using your talents to help Maggie and the many others with this disease.
Day 5 of Chemo
This is the last day for our 5-day chemo trip to the hospital. Maggie is currently in the process of getting chemo, which will conclude around 3:30 this afternoon (this includes the rescue agent, Mesna). For the most part, things have gone well. Maggie has responded well by not getting sick and continuing to be her happy, smiley self (as well as not sleeping). We have had one bump however. Friday night Maggie awoke with a wet onesie around the diaper area. After determining that the inside of her diaper was not wet, we called the nurse to help us assess what to do (mind you, Maggie has a catheter and shouldn't be wet). It ended up that Maggie's catheter was leaking around the tubing outside her diaper, so thankfully her catheter was still draining her urine. We "solved" the issue by wrapping gauze around the tubing. This solution didn't last through the day yesterday as the tubing began leaking more. After discussion with nurses and the doctor, we came up with wrapping a diaper around it so as not to have to change it as often. Again, this worked, but the heaviness of the wet diaper would pull at the catheter inside her and cause some pain.
This morning we woke up and to our dismay, the tubing had pulled completely free and was no longer attached. We thought we could salvage the catheter since part of the tube was still inside her, but moments later we noticed that that had fallen out as well. So, until we see the doctor, we are doing constant diaper changes and hoping that her bladder will release urine (and chemo) so as not to irritate her bladder. Since today is the last day of chemo I hope they will allow us to continue diaper changes versus another catheter (I just can't imagine they'd do another catheter though).
On a positive note, we will be going home today (as long as everything goes well) after her chemo is complete and has had time to flush through her body. We just received word that she'll get a blood transfusion before she leaves as her hemoglobin was borderline low. That, plus a couple of preventative medicines will be given before we head for home sometime tonight. We look forward to the comforts of home once again but know that her counts will begin to plummet, which isn't fun.
This morning we woke up and to our dismay, the tubing had pulled completely free and was no longer attached. We thought we could salvage the catheter since part of the tube was still inside her, but moments later we noticed that that had fallen out as well. So, until we see the doctor, we are doing constant diaper changes and hoping that her bladder will release urine (and chemo) so as not to irritate her bladder. Since today is the last day of chemo I hope they will allow us to continue diaper changes versus another catheter (I just can't imagine they'd do another catheter though).
On a positive note, we will be going home today (as long as everything goes well) after her chemo is complete and has had time to flush through her body. We just received word that she'll get a blood transfusion before she leaves as her hemoglobin was borderline low. That, plus a couple of preventative medicines will be given before we head for home sometime tonight. We look forward to the comforts of home once again but know that her counts will begin to plummet, which isn't fun.
Thursday, September 4, 2008
Celebrity sighting
Maggie and I (Andy) spent the day together today as Whitney went to work in Columbus. A day earlier, Whitney covered for me while I worked in the afternoon and evening. These are fairly difficult times because Maggie is connected to an IV pole, as well as tubing from her catheter to a container that hooks onto our bed. As a result, we are confined to a small portion of the room--or it takes a team effort to move everything to the other side of the room. Maggie is again pretty attached to our single bed instead of her crib, and she slept the whole night next to Whitney last night.
Anyways, today was a good day despite having problems in the past when mom is away. Maggie drank from a bottle (9.5 ounces) and snacked on part of a banana and some cereal. She napped okay and had a good time smiling and laughing. The most exciting time was when we got a visit from 2 awesome celebrities--Elmo and Grover!!! I was worried that Maggie would cry when she saw them, but she did okay. I just couldn't believe how big they were--both over 5 feet tall (they look so much smaller on TV!). Anyways, that was fun.
Maggie has 2 days of chemo finished, 3 to go. Then we'll have a couple weeks for her counts to recover, then a bone marrow aspirate to determine if Maggie's in remission. That will be a big event, of course. Typically 90-95% of ALL infants or more will get to remission early. The real challenges are staying in remission, and avoiding infections. So that's what we have ahead of us.
We'll continue to touch base with you all--thanks so much for your prayers.
Anyways, today was a good day despite having problems in the past when mom is away. Maggie drank from a bottle (9.5 ounces) and snacked on part of a banana and some cereal. She napped okay and had a good time smiling and laughing. The most exciting time was when we got a visit from 2 awesome celebrities--Elmo and Grover!!! I was worried that Maggie would cry when she saw them, but she did okay. I just couldn't believe how big they were--both over 5 feet tall (they look so much smaller on TV!). Anyways, that was fun.
Maggie has 2 days of chemo finished, 3 to go. Then we'll have a couple weeks for her counts to recover, then a bone marrow aspirate to determine if Maggie's in remission. That will be a big event, of course. Typically 90-95% of ALL infants or more will get to remission early. The real challenges are staying in remission, and avoiding infections. So that's what we have ahead of us.
We'll continue to touch base with you all--thanks so much for your prayers.
Wednesday, September 3, 2008
Back in the hospital
We came back into the hospital this morning for a 5 day chemotherapy treatment. With the treatment comes a catheter once again. The nurse gave her some Ativan this morning to help calm her while they inserted the catheter (previous times she has been highly sedated due to her spinal treatments, but didn't have one today). The Ativan has actually worked and Maggie has been sleeping for most of the afternoon. She has already had her 2 doses of chemotherapy and is on IV fluids the rest of the day. The chemotherapy treatments consist of 1 2-hour IV and another 30 minute infusion. The Cytoxan (30 minute infusion) can cause some nausea, so hopefully that doesn't occur. Maggie received this drug the first weekend of her diagnosis and it (or another drug) caused some nausea and vomitting. These chemotherapy drugs that she is receiving now will cause her counts to wipe out once again, which means she will be highly susceptable to infection. We pray that she will stay infection-free, especially these next couple of weeks when her body will be repairing itself.
On another note, Maggie has not been eating solids very well so I decided to try experimenting with some real food. She is taking to practicing eating a variety of foods--snow peas, cheerios, animal crackers, cucumbers, green beans, graham crackers, cinnamon toast crunch, and bread (just to name a few). She is also beginning to drink from a cup (we might just bi-pass the sippy cup). I'm learning that my little one just might want to grow up quicker than I thought. She's always been an independent little girl and she is beginning to show us now through self-feeding.
One other little step in the right direction--Maggie allowed her nurse to hold her today for awhile. This is quite a feat, given that only Mom and Dad (and Aunt Morgan) have been able to do so the last several months. She seems to be getting more comfortable in the surroundings that she is in, and perhaps leaving the stranger anxiety stage.
Please pray that these next 5 days will be easy on Maggie. Pray that she will not get sick from the chemo or have any other side effects, and that she will continue to be the happy, smiling girl that we've had the joy of witnessing the last month. Please also pray that as her counts go down, she will stay healthy and that they will recover quickly.
On another note, Maggie has not been eating solids very well so I decided to try experimenting with some real food. She is taking to practicing eating a variety of foods--snow peas, cheerios, animal crackers, cucumbers, green beans, graham crackers, cinnamon toast crunch, and bread (just to name a few). She is also beginning to drink from a cup (we might just bi-pass the sippy cup). I'm learning that my little one just might want to grow up quicker than I thought. She's always been an independent little girl and she is beginning to show us now through self-feeding.
One other little step in the right direction--Maggie allowed her nurse to hold her today for awhile. This is quite a feat, given that only Mom and Dad (and Aunt Morgan) have been able to do so the last several months. She seems to be getting more comfortable in the surroundings that she is in, and perhaps leaving the stranger anxiety stage.
Please pray that these next 5 days will be easy on Maggie. Pray that she will not get sick from the chemo or have any other side effects, and that she will continue to be the happy, smiling girl that we've had the joy of witnessing the last month. Please also pray that as her counts go down, she will stay healthy and that they will recover quickly.
Monday, September 1, 2008
Happy Labor Day!
Maggie's at home feeling pretty good, we think. We went to the doctor's office a couple times and had more blood drawn to check for bacteria...more standard follow up after getting a fever. So there were 3 labs taken, Wednesday, Thursday, and Friday. Interestingly, only the Wednesday sample seems to have shown any bacteria--a strep bacteria of some kind. So, more than likely a contaminant got into that sample while it was gathered. Whitney talked to a nurse today and her guess was that Maggie caught a virus, not a more serious bacterial infection. So, the best part is that her broviac isn't infected.
We've enjoyed a pretty good weekend here. Maggie's sleeping and eating are off a little bit, so that's been the main concern.
We see the doctor tomorrow, and should find out more then--maybe chemo and our 5+ day hospital visit are around the corner.
We've enjoyed a pretty good weekend here. Maggie's sleeping and eating are off a little bit, so that's been the main concern.
We see the doctor tomorrow, and should find out more then--maybe chemo and our 5+ day hospital visit are around the corner.
Thursday, August 28, 2008
8/28 update
Hello everyone,
We thought it would be important for us to give an update tonight. We had been scheduled for chemo tomorrow morning if everything went smoothly through tonight. Unfortunately, we'll be having a bit of a delay again. Wednesday night while I was at work Whitney called and said that she was on her way to the ER, that Maggie had a fever. Earlier in the day, we noticed that she had some significant rashes on her legs and back. Interestingly enough, they were located exactly where she had pressure applied while in the hospital. Most of her left thigh was red, spotty, and warm to the touch. Exactly where she had a bandage wrapped around her leg to secure her catheter while in the hospital. Also, most of her left calf was covered as well, where a blood pressure cuff was placed for much of Maggie's time in the hospital. Next, a small strip on her right ankle, where her identification band was located. Finally, an oddly shaped shape on her back. We think maybe this was where one of her leads was located--the wire that connected her to the machine that measures her vitals. We're not sure about this one. However, we hadn't seen (and still haven't) mouth sores! This has been such a relief, so far.
Of course standard protocol is to rush in, get antibiotics started and draw blood cultures for the lab to begin exploring what is causing the fever. We don't mess around with infections, sickness, or fevers. I ended up working until 9PM, and sometime around 9:30 Whitney was told that Maggie could go home, much to our surprise. I was in the process of packing my car with our clothes and other essentials. The key factors that allowed her to go home were 1) Maggie looked and felt relatively good, and 2) her counts are normal--she's able to fight the bug on her own and prevent it from spreading or otherwise worsening.
Today we went to the clinic to see Dr. French (Maggie's primary oncologist) and were told that there was a bacterial infection growing in the cultures drawn last night. It is gram positive (her last infection was gram negative, for those who understand what that means). Further, it appeared today that it was likely a pretty ordinary bug, not a strange or rare one. So we'll find out tomorrow if it is a strep infection, or a staph infection of some kind. She's already on an antibiotic that should take care of it.
However, we won't start chemo until they know for sure that they've identified it, knocked it out, and made sure that it isn't lingering in her IV tubing. There is a 25% chance for every bacterial infection that the IV tubing could be ruined, permanently infected by the bacteria--which would lead to a new surgery, a new broviac, and more frustration, delay, and additional pain for Maggie. We are desperate to hear good news next week that the infection clears out of the broviac (IV). Once it is determined that the bug is gone and clear from her line, we should be okayed to continue chemo.
So, we are having a delay, but a fairly routine one at this point. Maggie has been running fevers in the 99.5 to 100.3 range. Not too significant, and she seems to feel okay. We've had some difficulty getting her to take and keep down Tylenol as she's thrown it up a couple times, only to bounce back, eat some more, and act normally right away. Tomorrow we go back to see the doctor, get another dose of the IV antibiotics, and discuss our plans given the exact bug being identified. We'll be home over the weekend, more than likely, but unable to attend family gatherings (birthday parties). So that's frustrating. But we're glad that Maggie is okay and we will hopefully get on track with more chemo in the first half of next week.
Continued thanks for your concern, prayers, support, comments, and generosity.
We thought it would be important for us to give an update tonight. We had been scheduled for chemo tomorrow morning if everything went smoothly through tonight. Unfortunately, we'll be having a bit of a delay again. Wednesday night while I was at work Whitney called and said that she was on her way to the ER, that Maggie had a fever. Earlier in the day, we noticed that she had some significant rashes on her legs and back. Interestingly enough, they were located exactly where she had pressure applied while in the hospital. Most of her left thigh was red, spotty, and warm to the touch. Exactly where she had a bandage wrapped around her leg to secure her catheter while in the hospital. Also, most of her left calf was covered as well, where a blood pressure cuff was placed for much of Maggie's time in the hospital. Next, a small strip on her right ankle, where her identification band was located. Finally, an oddly shaped shape on her back. We think maybe this was where one of her leads was located--the wire that connected her to the machine that measures her vitals. We're not sure about this one. However, we hadn't seen (and still haven't) mouth sores! This has been such a relief, so far.
Of course standard protocol is to rush in, get antibiotics started and draw blood cultures for the lab to begin exploring what is causing the fever. We don't mess around with infections, sickness, or fevers. I ended up working until 9PM, and sometime around 9:30 Whitney was told that Maggie could go home, much to our surprise. I was in the process of packing my car with our clothes and other essentials. The key factors that allowed her to go home were 1) Maggie looked and felt relatively good, and 2) her counts are normal--she's able to fight the bug on her own and prevent it from spreading or otherwise worsening.
Today we went to the clinic to see Dr. French (Maggie's primary oncologist) and were told that there was a bacterial infection growing in the cultures drawn last night. It is gram positive (her last infection was gram negative, for those who understand what that means). Further, it appeared today that it was likely a pretty ordinary bug, not a strange or rare one. So we'll find out tomorrow if it is a strep infection, or a staph infection of some kind. She's already on an antibiotic that should take care of it.
However, we won't start chemo until they know for sure that they've identified it, knocked it out, and made sure that it isn't lingering in her IV tubing. There is a 25% chance for every bacterial infection that the IV tubing could be ruined, permanently infected by the bacteria--which would lead to a new surgery, a new broviac, and more frustration, delay, and additional pain for Maggie. We are desperate to hear good news next week that the infection clears out of the broviac (IV). Once it is determined that the bug is gone and clear from her line, we should be okayed to continue chemo.
So, we are having a delay, but a fairly routine one at this point. Maggie has been running fevers in the 99.5 to 100.3 range. Not too significant, and she seems to feel okay. We've had some difficulty getting her to take and keep down Tylenol as she's thrown it up a couple times, only to bounce back, eat some more, and act normally right away. Tomorrow we go back to see the doctor, get another dose of the IV antibiotics, and discuss our plans given the exact bug being identified. We'll be home over the weekend, more than likely, but unable to attend family gatherings (birthday parties). So that's frustrating. But we're glad that Maggie is okay and we will hopefully get on track with more chemo in the first half of next week.
Continued thanks for your concern, prayers, support, comments, and generosity.
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