All is well and Greta is sleeping soundly right now. But the day was much different this morning at 6:30. She had completed 2 of the 3 Chemo drugs and was in the process of completing her 3rd when her broviac became clogged after 3 hours of infusion. A flush was attempted to unclog the line but a leak occurred at a previously repaired site. This caused some commotion as you can expect. The broviac has been repaired, but 1 of the 2 lines remains clogged and we can't begin trying to unclog the line or resume chemo until the glue has cured. The glue needs 12 hours to cure so that means we are delayed until 9:00 pm tonight.
In the meantime she has a new IV (in her finger sucking hand) and she is not happy about that! To make the day even better we decided that we will try a new IV drug that will allow us to eliminate one of her oral medications. This sounded good in theory, that is until she threw up all over Mommy's shorts. Thanks goodness this medicine is now complete and she won't need anymore for a month. The doctors told us they can time it better next time, and she shouldn't get sick.
This is our day so far and it's only noon! We hope the rest of the day goes better.
As far as that stubborn broviac: The plan is to have it replaced prior to her next round of treatment. That means yet another surgery, but it should mean an easier trip to the hospital next time and easier flushes at home for Mommy and Daddy.
Thanks for all the prayers!
The Betz Family
Wednesday, July 30, 2008
Tuesday, July 29, 2008
Chemo, Continued
Greta's back at DeVos Children's Hospital for more chemotherapy, she went in for clinic this morning and is receiving a transfusion before they get started with the 3-day course later tonight. If all goes as usual, she should be coming home Friday evening.
Kristi and Randy will take Greta to Ann Arbor (UM Hospital has the PET scan equipment) sometime soon, to try and get that specialized scan, so they won't have to travel to Cincinnati again to have that done.
Her doctors and parents are still weighing their options as to next steps. Thanks, everyone, for continued prayers.
Love,
Kari
Kristi and Randy will take Greta to Ann Arbor (UM Hospital has the PET scan equipment) sometime soon, to try and get that specialized scan, so they won't have to travel to Cincinnati again to have that done.
Her doctors and parents are still weighing their options as to next steps. Thanks, everyone, for continued prayers.
Love,
Kari
Thursday, July 24, 2008
Adventures in Ohio
The trip down was uneventful, the night was long...poor Greta's not used to sleeping in a 'pack-n-play', so she kept herself (and us!) awake for most of the night.
Meeting with the doctors was informative and a bit daunting; we've heard so much good news as regards her response to the treatment that we weren't necessarily on guard for the realities of what lies ahead.
Cincinnati has recommended that Greta continue to receive chemotherapy for probably another 15-16 weeks. While the tumor is minimal in size at this point, there could be cancerous cells located here and there- only surgery or radiation, or some other new treatment, can/may eliminate it completely. Therefore, we're advised that Greta should continue to receive chemo to keep reducing the tumor and continue to eliminate cancerous cells. If we continue chemotherapy we will have the option of using a lower dose radiation which not only will kill the remaining cancerous cells but it will also minimize its damage effects to healthy cells. It is critical to knock this thing out the first time, because if it comes back it will be much more difficult to treat. That is why we must do all we can to get rid of the cancerous cells, even if it means using risky treatment.
We have an appointment next week to return to Cincinnati for a P.E.T. scan, one that might give the doctors a better idea as to the point of origin (DeVos does not have the particular piece of equipment to perform this scan).
Please continue to pray for us all; we have some difficult decisions to make for Greta, knowing your love is behind us is a terrific comfort that we most sincerely appreciate.
Love,
The Betz Family
Meeting with the doctors was informative and a bit daunting; we've heard so much good news as regards her response to the treatment that we weren't necessarily on guard for the realities of what lies ahead.
Cincinnati has recommended that Greta continue to receive chemotherapy for probably another 15-16 weeks. While the tumor is minimal in size at this point, there could be cancerous cells located here and there- only surgery or radiation, or some other new treatment, can/may eliminate it completely. Therefore, we're advised that Greta should continue to receive chemo to keep reducing the tumor and continue to eliminate cancerous cells. If we continue chemotherapy we will have the option of using a lower dose radiation which not only will kill the remaining cancerous cells but it will also minimize its damage effects to healthy cells. It is critical to knock this thing out the first time, because if it comes back it will be much more difficult to treat. That is why we must do all we can to get rid of the cancerous cells, even if it means using risky treatment.
We have an appointment next week to return to Cincinnati for a P.E.T. scan, one that might give the doctors a better idea as to the point of origin (DeVos does not have the particular piece of equipment to perform this scan).
Please continue to pray for us all; we have some difficult decisions to make for Greta, knowing your love is behind us is a terrific comfort that we most sincerely appreciate.
Love,
The Betz Family
Monday, July 21, 2008
So Good to be Home
Little Ms. Greta Betz was discharged yesterday evening after receiving her 6th round of chemotherapy. She seemed a little tired when I saw her, but I think any of us would be (especially her Mom and Dad!), after spending another 5 nights in the hospital!
Over the course of her stay, Randy & Kristi had opportunities to speak with her doctors about what lies ahead.
The official notes from her CT and bone scans declare that Greta is in remission, which we're told means that tests indicate there are no signs of a tumor in her body at this time. While that's incredibly great news, and certainly better results than I think any of us could have anticipated after only 12 weeks of treatment, we're trying to keep our excitement in check. The very nature of Ewing's Sarcomas mandates that there will be a second phase of her treatment, that it cannot be beaten by chemotherapy, alone. Greta will need another kind of treatment; whether it be surgery, radiation, some combination of both, or otherwise.
Once her parents have had a chance to meet with the doctors in Cincinnati, and then meet again with her team of specialists here, some tough decisions will need to be made to plot a course for the second phase of Greta's care and continuing recovery.
Greta is so lucky to have such wonderful support from her family, friends and community. Her parents and her brother are strong and able; and bolstered by all of your continued prayers and friendship, they're looking forward to celebrating the success of Greta and her doctors when she gets a clean bill of health. We're all thrilled at the good news we've received so far, yet anxious to learn what to expect next.
Love,
Kari
Over the course of her stay, Randy & Kristi had opportunities to speak with her doctors about what lies ahead.
The official notes from her CT and bone scans declare that Greta is in remission, which we're told means that tests indicate there are no signs of a tumor in her body at this time. While that's incredibly great news, and certainly better results than I think any of us could have anticipated after only 12 weeks of treatment, we're trying to keep our excitement in check. The very nature of Ewing's Sarcomas mandates that there will be a second phase of her treatment, that it cannot be beaten by chemotherapy, alone. Greta will need another kind of treatment; whether it be surgery, radiation, some combination of both, or otherwise.
Once her parents have had a chance to meet with the doctors in Cincinnati, and then meet again with her team of specialists here, some tough decisions will need to be made to plot a course for the second phase of Greta's care and continuing recovery.
Greta is so lucky to have such wonderful support from her family, friends and community. Her parents and her brother are strong and able; and bolstered by all of your continued prayers and friendship, they're looking forward to celebrating the success of Greta and her doctors when she gets a clean bill of health. We're all thrilled at the good news we've received so far, yet anxious to learn what to expect next.
Love,
Kari
Wednesday, July 16, 2008
It's a Beautiful Day!
What a wonderful day! Greta's doctors have given us the "thumbs up": as hoped, her tumor has further reduced, and her bone scan has come back clean again!
We had a slight change of plans yesterday, during Greta's scans her broviac sprung a leak which the doctors were able to repair quickly. However that means an automatic stay in the hospital and 24 hours of antibiotics. So she's staying in the hospital through the rest of this week. The upside is that her 6th round of chemotherapy which was scheduled to begin Thursday has moved up by one day to start today. This morning Greta was giggling, blowing kisses and flirting with the hospital staff, while enjoying Cheerios, bacon, and some cuddles with Mommy & Daddy. What a little star!
Kristi and Randy anticipate that they'll probably be home by Sunday evening, so the Betzes will be able to catch a few nights under their own roof before heading to Cincinnati. The timing for their trip has worked out really well in relation to her treatments, and going there with "fresh" scan results will be a big help to the doctors in Ohio.
It's a beautiful day! Our thanks from Greta and her family to all of you who have been sending your prayers and notes of support, and who have so dilligently kept up with her progress. Hearing from all of you has strengthened our faith and given us so much comfort; we can't find words to let you know how grateful we are. Please continue to pray for her, for her doctors, and for her loved ones - obviously, it's working!
Did I mention what a great day it is?
Love,
Kari
We had a slight change of plans yesterday, during Greta's scans her broviac sprung a leak which the doctors were able to repair quickly. However that means an automatic stay in the hospital and 24 hours of antibiotics. So she's staying in the hospital through the rest of this week. The upside is that her 6th round of chemotherapy which was scheduled to begin Thursday has moved up by one day to start today. This morning Greta was giggling, blowing kisses and flirting with the hospital staff, while enjoying Cheerios, bacon, and some cuddles with Mommy & Daddy. What a little star!
Kristi and Randy anticipate that they'll probably be home by Sunday evening, so the Betzes will be able to catch a few nights under their own roof before heading to Cincinnati. The timing for their trip has worked out really well in relation to her treatments, and going there with "fresh" scan results will be a big help to the doctors in Ohio.
It's a beautiful day! Our thanks from Greta and her family to all of you who have been sending your prayers and notes of support, and who have so dilligently kept up with her progress. Hearing from all of you has strengthened our faith and given us so much comfort; we can't find words to let you know how grateful we are. Please continue to pray for her, for her doctors, and for her loved ones - obviously, it's working!
Did I mention what a great day it is?
Love,
Kari
Tuesday, July 15, 2008
Saturday, July 12, 2008
Scans up next
Greta had her clinic day on Friday and her counts are all back up again, so she is bouncing back from this round very well, and no transfusions were required. Now we are eagerly looking forward to her CT and Bone scans which will take place on Tuesday. The results of these scans will determine when she'll next have chemo, or possibly even surgery. Needless to say, our anxiety level is high - but so are our hopes!
Because her condition is so rare, we decided that we should seek another opinion from the specialists at Cincinnati Children's Hospital in Cincinnati, Ohio. We have an appointment on the 23rd of this month to meet with doctors there for a second opinion on Greta's course of treatment. Although we are thrilled with the success we have seen throughout Greta's treatment thus far at DeVos Children's Hospital, and have every confidence in her physicians here, we feel we should make every effort to be as informed as possible as to what our options are for the second phase of Greta's healing. The wonderful staff at DeVos have been very supportive of our desire to hear what suggestions the doctors in Cincinnati have to offer.
We ask that you please continue to pray for Greta's healing and for guidance for her parents and her doctors in making good decisions in her best interest.
Thank you!
The Betz Family
Because her condition is so rare, we decided that we should seek another opinion from the specialists at Cincinnati Children's Hospital in Cincinnati, Ohio. We have an appointment on the 23rd of this month to meet with doctors there for a second opinion on Greta's course of treatment. Although we are thrilled with the success we have seen throughout Greta's treatment thus far at DeVos Children's Hospital, and have every confidence in her physicians here, we feel we should make every effort to be as informed as possible as to what our options are for the second phase of Greta's healing. The wonderful staff at DeVos have been very supportive of our desire to hear what suggestions the doctors in Cincinnati have to offer.
We ask that you please continue to pray for Greta's healing and for guidance for her parents and her doctors in making good decisions in her best interest.
Thank you!
The Betz Family
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