A direct quote from Lisa's doctor who responded via email:
The CT scan I looked at with the radiologist and EVERY one of the masses is much much smaller. They are still there, but small! That is great news...so now I need to get with the surgeons, Dr. Mody, and the neurosurgeons to figure out what we do next.
Yeah....a sigh of relief!! And some prayers of thanks....things can only get better...right?!
Thursday, October 16, 2008
Wednesday, October 15, 2008
Remember to Pray at 11:00am EST
Lisa is having her test done tomorrow.....all those reading offer up a prayer at 11:00am EST...perhaps we can shake the heavens with our requests.
Also....not able to get into details right now regarding Maranda (and please do not ask her about this because we have not told her yet) but apparently her scoliosis is caused by a rare condition (of course) called Syringomelia. Syringomyelia (sear-IN-go-my-EEL-ya) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying a portion of the spinal cord from its center and expanding outward.
At this point in time we don't know exactly what this means except for what we can get from the Internet. We will be setting up a meeting with a neurosurgeon to discuss options....it could be observation, physical therapy or surgery. Info seems to indicate surgery is most successful option, but this is a chronic condition that can possibly re-occur over time. As a child it manifests as scoliosis, as an adult it can cause headaches, pain and sometimes result in some disabilities.
jeeezzzz...Mike and I are off to drink!
Also....not able to get into details right now regarding Maranda (and please do not ask her about this because we have not told her yet) but apparently her scoliosis is caused by a rare condition (of course) called Syringomelia. Syringomyelia (sear-IN-go-my-EEL-ya) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying a portion of the spinal cord from its center and expanding outward.
At this point in time we don't know exactly what this means except for what we can get from the Internet. We will be setting up a meeting with a neurosurgeon to discuss options....it could be observation, physical therapy or surgery. Info seems to indicate surgery is most successful option, but this is a chronic condition that can possibly re-occur over time. As a child it manifests as scoliosis, as an adult it can cause headaches, pain and sometimes result in some disabilities.
jeeezzzz...Mike and I are off to drink!
Monday, October 13, 2008
Warm Weekend
Hope everyone enjoyed the warm weather and their weekend. We sure did. Lisa, Mike and Chrissy drove up to Golden Pond to visit Grandma and even brought her back for a day. Mike and Lisa got a little flying in today and took Grandma back home.
This week is going good so far. Wed Lisa will get the injection for the test that will be run on Th and F. Those results will let us know whether or not there are any tumors that can be removed with surgery and how well Lisa is responding to chemo. If surgery is possible, it will be scheduled soon.
We have 9 states that are still not represented on the prayer chain....Alaska, Kansas, Louisiana, Nebraska, Oklahoma, Rhode Island, South Dakota, Vermont, Wyoming....the hope is that on Thursday when Lisa's test are being run at 11:00a.m. EST, everyone in all states can say a quick prayer.
If you haven't placed your order for Lisa's bracelets, please do it asap...I'll be placing the order by Tuesday close of business.
This week is going good so far. Wed Lisa will get the injection for the test that will be run on Th and F. Those results will let us know whether or not there are any tumors that can be removed with surgery and how well Lisa is responding to chemo. If surgery is possible, it will be scheduled soon.
We have 9 states that are still not represented on the prayer chain....Alaska, Kansas, Louisiana, Nebraska, Oklahoma, Rhode Island, South Dakota, Vermont, Wyoming....the hope is that on Thursday when Lisa's test are being run at 11:00a.m. EST, everyone in all states can say a quick prayer.
If you haven't placed your order for Lisa's bracelets, please do it asap...I'll be placing the order by Tuesday close of business.
Saturday, October 11, 2008
Busy Week
So sorry for not posting sooner...it's been a busy week. 2 MRIs, a brace fitting, bloodwork, PT appts and oh yah...work, school, catechism, karate, soccer and gymnastics.
Here's what we know:
Maranda sailed thru her MRI....getting the results to her doctor, not so easy. They were given to me on a CD which I attempted to drop off at the doc's office when I had Lisa's bloodwork drawn. This turned out to be a 25 minute process....the doc's office doesn't have a receptionist and I wasn't successful in flagging down a nurse. Finally I just went thru the doors and looked around for a nurses station. When I found it there were 4 people sitting there who all looked at me blankly when I said I needed to drop something off for Dr. Farley. Apparently the don't work for her and didn't know who she was. After 15 minutes of discussion, we decided they should just leave the CD in her mailbox because they thought it would take a week (?!) to get it to her via interoffice mail. I know she is in on Mondays, so my hopes are she gets the CD this Monday. I'm assuming she have to send it off to have a lab read it before we know the results of Maranda's MRI.
Her brace fitting went fine. The orthotist was very friendly and really put Maranda at ease. She got to wear this stylish cotton form fitting sock and he did measurements on her body with a ruler....so no casting...yeah! He will be custom forming her brace and should have a preliminary cast for her to try on in 2 weeks. If it fits properly, we'll bring it home. I'm sure her father and her are thinking of names for the newest addition to the family. Getting answers regarding insurance coverage has been a stinking nightmare....so at this point, I've given up and am just keeping my fingers crossed that it's covered. We'll know soon enough.
Lisa's week went well. She's had a runny nose and been a bit more sleepy, but other than that she's holding her own. Her blood counts were not the highest, but they were just enough that we haven't had to get any transfusions this week. She had her MRI on Th night and we anticipate we'll get the results for those next week once all the rest of the tests are done.
Speaking of tests.....her MIBG scans have been bumped a day because of all things.. the Columbus Day holiday. Apparently the company that sends the die needed for the test are not open on Columbus day so the hospital had to reschedule all the appts. She will be having her MIBG and CAT scan this Th.
I'm still on my quest to get every state on the prayer list. We are still missing Alaska, Connecticut, Idaho, Kansas, Louisiana, Montana, Nebraska, Oklahoma, Rhode Island, South Dakota, Utah, Vermont, Washington, Wyoming...so spread the word if you know anyone in those states! I'm thinking we should have a nationwide moment of prayer this Th at 11:00 to pray that the chemo is working...that Lisa's cancer be operable and survivable....that she beats the odds and goes into remission and stays there for the rest of her life, not the 2 years most children diagnosed with this cancer get. That all of us have the strength to live through this and learn from it no matter what the outcome and truly appreciate the gift that our lives are.
Here's what we know:
Maranda sailed thru her MRI....getting the results to her doctor, not so easy. They were given to me on a CD which I attempted to drop off at the doc's office when I had Lisa's bloodwork drawn. This turned out to be a 25 minute process....the doc's office doesn't have a receptionist and I wasn't successful in flagging down a nurse. Finally I just went thru the doors and looked around for a nurses station. When I found it there were 4 people sitting there who all looked at me blankly when I said I needed to drop something off for Dr. Farley. Apparently the don't work for her and didn't know who she was. After 15 minutes of discussion, we decided they should just leave the CD in her mailbox because they thought it would take a week (?!) to get it to her via interoffice mail. I know she is in on Mondays, so my hopes are she gets the CD this Monday. I'm assuming she have to send it off to have a lab read it before we know the results of Maranda's MRI.
Her brace fitting went fine. The orthotist was very friendly and really put Maranda at ease. She got to wear this stylish cotton form fitting sock and he did measurements on her body with a ruler....so no casting...yeah! He will be custom forming her brace and should have a preliminary cast for her to try on in 2 weeks. If it fits properly, we'll bring it home. I'm sure her father and her are thinking of names for the newest addition to the family. Getting answers regarding insurance coverage has been a stinking nightmare....so at this point, I've given up and am just keeping my fingers crossed that it's covered. We'll know soon enough.
Lisa's week went well. She's had a runny nose and been a bit more sleepy, but other than that she's holding her own. Her blood counts were not the highest, but they were just enough that we haven't had to get any transfusions this week. She had her MRI on Th night and we anticipate we'll get the results for those next week once all the rest of the tests are done.
Speaking of tests.....her MIBG scans have been bumped a day because of all things.. the Columbus Day holiday. Apparently the company that sends the die needed for the test are not open on Columbus day so the hospital had to reschedule all the appts. She will be having her MIBG and CAT scan this Th.
I'm still on my quest to get every state on the prayer list. We are still missing Alaska, Connecticut, Idaho, Kansas, Louisiana, Montana, Nebraska, Oklahoma, Rhode Island, South Dakota, Utah, Vermont, Washington, Wyoming...so spread the word if you know anyone in those states! I'm thinking we should have a nationwide moment of prayer this Th at 11:00 to pray that the chemo is working...that Lisa's cancer be operable and survivable....that she beats the odds and goes into remission and stays there for the rest of her life, not the 2 years most children diagnosed with this cancer get. That all of us have the strength to live through this and learn from it no matter what the outcome and truly appreciate the gift that our lives are.
Saturday, October 4, 2008
Counting blessings
Maranda completed her MRI today. It was an hour wait before we got started and then it took an hour to complete her scans. She was anxious, but she did exceedingly well in the traditional machine (the Open MRI machine she was supposed to be in is only available on Thursdays...ya think they would tell you that when you call to schedule an appt for an open MRI). I'll be dropping the results off this week with the doctor and they can let us know if there is anything else we have to deal with!! Maranda is scheduled for her brace fitting this Thursday.
Lisa is doing better. She's much perkier and has only thrown up once in the past two days. She has been eating more as well...yeah! We're still giving her hydration just to be safe. She goes Monday for her bloodwork. Hopefully her counts will be good...she's a bit more tired than usual which usually means her hemoglobin is down...we'll see.
Starting this Thursday and thru the following week, Lisa is scheduled for a series of scans. These scans will determine how the cancer is responding to chemo and if any of her tumors can be removed with surgery. If surgery is possible, it will happen before the next chemo....so probably before Halloween. Have no idea what this entails...not sure how many tumors there are, nor how many surgeries would be required...whether they would do one surgery or many....this is what the scans will help determine.
After surgery, she would have approx 2 weeks to recover before chemo 6. Four to five weeks after chemo 6, will be a "big" chemo followed by Bone Marrow Transplant and she would be inpatient for at least 3 weeks. The "big" chemo involves some different options to choose from based on her response to prior treatment and what the doctors feel is best based on current clinical studies (statistically this has always been a tough cancer to beat, so these studies offer us the latest and best options)
Once "big" chemo/bone marrow transplant is done and she has had time to recover, she will have radiation treatment. Not sure at this point how many doses of radiation would occur...that's a bridge we will cross as we get closer given all the elements that can go awry between now and then.
I was just thinking the other day how quickly things can change and how those changes impact the "blessings" you count. If you had asked me a year ago what I thought I would be doing at this time, I probably would have said working hard at my job, practicing yoga, perhaps becoming a Master Gardener, maybe getting my Professional Organizing dream off the ground. My blessings would have been my husband, kids, health, financial security.
I would have never thought to answer dealing with cancer and never would I have found a way to see it as a blessing. Cancer---blessing---that's crazy. But, the other day I realized that because of the cancer I am able to spend more time with Lisa. I know not all of it good times, not all if it puke-free, but it is more time than if she was healthy and still in daycare. Cancer has also bonded many family, friends and people in our community who love and support us. Cancer has reinforced our belief that even in hard economic times, there are good companies and great bosses who stand behind you. With all the time we have spent at Motts, I realize how lucky we are...there are a LOT more things that we could be dealing with. So I count my blessings each day...family, friends, community, jobs, food, income....we are happy and content...our kids are up, running around, can communicate, feed themselves, dress themselves. I can feed and dress myself! . Every day, I try to remind myself that life is a blessing and it's important to appreciate that day, because once it is gone, you can never get it back. Life is good, but it is precious and finite.
So once again, I pray that God helps me to live today as if it were my last, because you never know, it just might be.
Lisa is doing better. She's much perkier and has only thrown up once in the past two days. She has been eating more as well...yeah! We're still giving her hydration just to be safe. She goes Monday for her bloodwork. Hopefully her counts will be good...she's a bit more tired than usual which usually means her hemoglobin is down...we'll see.
Starting this Thursday and thru the following week, Lisa is scheduled for a series of scans. These scans will determine how the cancer is responding to chemo and if any of her tumors can be removed with surgery. If surgery is possible, it will happen before the next chemo....so probably before Halloween. Have no idea what this entails...not sure how many tumors there are, nor how many surgeries would be required...whether they would do one surgery or many....this is what the scans will help determine.
After surgery, she would have approx 2 weeks to recover before chemo 6. Four to five weeks after chemo 6, will be a "big" chemo followed by Bone Marrow Transplant and she would be inpatient for at least 3 weeks. The "big" chemo involves some different options to choose from based on her response to prior treatment and what the doctors feel is best based on current clinical studies (statistically this has always been a tough cancer to beat, so these studies offer us the latest and best options)
Once "big" chemo/bone marrow transplant is done and she has had time to recover, she will have radiation treatment. Not sure at this point how many doses of radiation would occur...that's a bridge we will cross as we get closer given all the elements that can go awry between now and then.
I was just thinking the other day how quickly things can change and how those changes impact the "blessings" you count. If you had asked me a year ago what I thought I would be doing at this time, I probably would have said working hard at my job, practicing yoga, perhaps becoming a Master Gardener, maybe getting my Professional Organizing dream off the ground. My blessings would have been my husband, kids, health, financial security.
I would have never thought to answer dealing with cancer and never would I have found a way to see it as a blessing. Cancer---blessing---that's crazy. But, the other day I realized that because of the cancer I am able to spend more time with Lisa. I know not all of it good times, not all if it puke-free, but it is more time than if she was healthy and still in daycare. Cancer has also bonded many family, friends and people in our community who love and support us. Cancer has reinforced our belief that even in hard economic times, there are good companies and great bosses who stand behind you. With all the time we have spent at Motts, I realize how lucky we are...there are a LOT more things that we could be dealing with. So I count my blessings each day...family, friends, community, jobs, food, income....we are happy and content...our kids are up, running around, can communicate, feed themselves, dress themselves. I can feed and dress myself! . Every day, I try to remind myself that life is a blessing and it's important to appreciate that day, because once it is gone, you can never get it back. Life is good, but it is precious and finite.
So once again, I pray that God helps me to live today as if it were my last, because you never know, it just might be.
Thursday, October 2, 2008
Me & Jamie
Boy....you should all feel sorry for Jamie....look how tall she is...that's got to be tough!
Mike has been updating the blog...so I won't disrupt his upbeat posts...let's just say that Lisa does handle the puking a lot better than the rest of us
To all those of you who still don't have a Lisa bracelet, I apologize. We ran into a problem with the manufacturer....they took our order, took our money and now they can't find any record of either. I'm working on disputing the charge with our credit card company. In the mean time, I will be placing an order with a new company. If you would like Lisa bracelets, please fill in your name and how many bracelets needed by clicking here.
Thursday 10/2
Mike here again and it's Thursday morning. The week has been manageable with Wednesday being the worst so far. This is mainly because Lisa wasn't interested in eating or drinking at all and complained about her lip and inside of her mouth being sore. Linda took it upon herself to call the doctor and have more hydration bags delivered since the last one finished on Monday night. They definitely help to top off her fluids and she seems better on the days she has them. I hooked her up last night and it appeared to help today since she was more energetic this morning and said she felt better. (Although she's sleeping as I type this.) The throwing up still comes in the morning pretty regularly with another bout in the afternoon so it's strange how days like these seem like "good" ones. I took her in this morning for another blood test. So far this week her numbers have been acceptable, say a prayer that they continue that trend as well as no complications i.e., fever, bad mouth sores and the rest. Thanks everyone for your support! We'll update again soon.
......... 15 minutes later .....
Just got the call with her blood test results [sigh] low hemoglobin, low platelets so we're heading to Mott's for transfusions. More later.
......... It's later, 4:15 PM to be precise and were done with the platelets and about half way through the blood. We should be out of here by 5:oo - 5:30. With all the fluids topped off we should be set for a cool but sunny weekend. BTW - Maranda is going for her MRI on Saturday morning so send a few her way if you're able. Thanks everyone!
......... 15 minutes later .....
Just got the call with her blood test results [sigh] low hemoglobin, low platelets so we're heading to Mott's for transfusions. More later.
......... It's later, 4:15 PM to be precise and were done with the platelets and about half way through the blood. We should be out of here by 5:oo - 5:30. With all the fluids topped off we should be set for a cool but sunny weekend. BTW - Maranda is going for her MRI on Saturday morning so send a few her way if you're able. Thanks everyone!
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