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.
Wednesday, September 17, 2008
Wednesday, September 10, 2008
Request
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.
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.
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.
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