Friday, August 21, 2009
More waiting...
Seems as though luck is just not on our side. One of the machines at the hospital is down and therefore the hospital can't do both tests at the same time until September 3rd. Seems crazy to me, but I'm sure there is a more detailed explanation that we're not privy to. Our appointment isn't until 1pm on the 3rd, so it will be fun (NOT!) trying to tell Lola that she can't have anything to drink or have breakfast or lunch (due to the anesthesia) that day... we'll have to keep her very busy and mind off food and water. I expect a very grumpy girl!
Wednesday, August 19, 2009
Finally!
After two weeks, they finally worked through the red tape and received authorization from the insurance company. The hospital called today to advise. Lola should be scheduled sometime next week for her tests. I'll post when I know exactly when.
Sunday, August 16, 2009
Insurance Companies!!!! Grrrrr.
We found out Friday that the hospital is having a problem getting authorization from the insurance company for the necessary tests. They say they are working through the red tape, but this is what is causing the delay. They seemed to think, if all goes well, we'll get a call on Monday for when the next tests will be scheduled.
Wednesday, August 12, 2009
One week later
We still haven't received a schedule for Lola's next round of tests. ...the waiting is the hardest part :(
Thursday, August 6, 2009
Today's Dr Appointment
As scheduled, we went to Lola's Oncologist appointment today. The doctor, Dr. Wynn, was super nice and spent a lot of time with us, answering questions and giving Lola a thorough examination. He confirmed a lot of what we have learned prior to the appointment, in that the type of cancer that Lola has is very slow growing (this is what low-grade implies) and isn't quick to metastasize. The surgeon that removed the tumor had been in close contact with Dr. Wynn throughout this whole ordeal, so he was quite familiar with Lola's case.
There are many possible scenarios that could play out, with the best case scenario being that the surgeon was able to remove the entire tumor completely. If this is the case, then we may be just looking at having MRIs every three months for the next year and then backing off to a regular schedule of once a year to insure the tumor doesn't regrow. If just a few cells were left behind from the surgery, that is all that is needed to sometimes allow it to grow back--sigh. This could mean additional surgery. If the catscan or mri shows that they didn't get it all, then they may have to cut, go back in, and try to remove the rest. The surgeon can only get so aggressive with where he cuts, due to the nerves and being so close to the spine. If they can not remove the entire tumor due to the risks involved then they may have to do radiation or some type of treatment. This would be second to worse case scenario. With the worse case scenario being that this tumor is secondary to something else.
With all this being said, we left the doctors office today with a planned appointment for a MRI and a complete body CATSCAN to obtain as much detail as possible to see if the tumor was completely removed and if there is anything else going on that may have caused this.
The positive notes we left with are: It is more often than not, that the surgeons are able to remove the entire tumor the first time and basic monitoring is all that is needed afterward for this type of cancer. Also, they were able to draw blood and do tests in the office that showed a lot of indicators are in the normal range -- phew.
We are remaining cautiously optimistic at this time and appreciate everyone's thoughts and prayers. It is a scary time for us, but it is so comforting to know that we have such great family and friends to help us through this time.
We don't have a set date for when the next round of tests (MRI and CATSCAN) are, but when we know, I will post it. Lola needs to be sedated for the MRI, so we are waiting for the hospital to coordinate a time when they can do both tests at the same time so she only has to be sedated once.
Stay tuned.
There are many possible scenarios that could play out, with the best case scenario being that the surgeon was able to remove the entire tumor completely. If this is the case, then we may be just looking at having MRIs every three months for the next year and then backing off to a regular schedule of once a year to insure the tumor doesn't regrow. If just a few cells were left behind from the surgery, that is all that is needed to sometimes allow it to grow back--sigh. This could mean additional surgery. If the catscan or mri shows that they didn't get it all, then they may have to cut, go back in, and try to remove the rest. The surgeon can only get so aggressive with where he cuts, due to the nerves and being so close to the spine. If they can not remove the entire tumor due to the risks involved then they may have to do radiation or some type of treatment. This would be second to worse case scenario. With the worse case scenario being that this tumor is secondary to something else.
With all this being said, we left the doctors office today with a planned appointment for a MRI and a complete body CATSCAN to obtain as much detail as possible to see if the tumor was completely removed and if there is anything else going on that may have caused this.
The positive notes we left with are: It is more often than not, that the surgeons are able to remove the entire tumor the first time and basic monitoring is all that is needed afterward for this type of cancer. Also, they were able to draw blood and do tests in the office that showed a lot of indicators are in the normal range -- phew.
We are remaining cautiously optimistic at this time and appreciate everyone's thoughts and prayers. It is a scary time for us, but it is so comforting to know that we have such great family and friends to help us through this time.
We don't have a set date for when the next round of tests (MRI and CATSCAN) are, but when we know, I will post it. Lola needs to be sedated for the MRI, so we are waiting for the hospital to coordinate a time when they can do both tests at the same time so she only has to be sedated once.
Stay tuned.
Thursday, July 30, 2009
Thursdays for Lola
It's been 4 days for us to digest this news and still I keep waiting for a phone call telling us that Lola's test results got mixed up with someone else. No call yet.
People have been asking how she is doing. Not to worry, she is acting like a normal healthy 2.5 year old. She looks forward to every Thursday when we go to her Baby Bungalow class. She gets to play on the playground, sing songs, and do crafts -- she loves it. Here's a picture taken today -- you can see she is happy to be there!
Tuesday, July 28, 2009
Time to revive the blog
Wow! It's been a long time away. Life just kinda got in the way and our little family blog took a little (ok, a long) time off.
I want to share the journey through this challenging chapter of our lives. Perhaps it will be more therapeutic for me, but at the same time will help to share information and updates as to what is going on.
First, let's bring everyone up to speed.
In late June I noticed a 'bump' to the left of Lola's center-back neck. At first I figured it was nothing and would wait for it to go away by itself, thinking it was just a cyst or something minor. After sleeping on it for a night and something not feeling just right, I made an appointment the next day for Lola. During Lola's appointment, June 30th, her doc had no idea what the bump was and called in for a consult from one of her partners. He also had no idea. They collaborated and decided it would be best to refer Lola over for a surgery consult. The second doc made a hand signal (similar to wheels on the bus) indicating we should get her over there pretty quick. Before that appointment, Lola had some blood work done and also had to undergo an ultrasound test to provide additional info for the surgery consult. The blood work came back normal, so we had a little relief about that (it ruled out Lukemia).
The Surgeon consult appointment took place on July 6th and he ordered a MRI for Lola which was done on July 13th. Results from that were inconclusive, so the doc wanted to biopsy the lump. Lola went in on Wednesday, July 15th for surgery. She was in surgery for over an hour and instead of just a biopsy of the lump, the doc decided it was best just to remove the entire thing since she was already sedated and he had to cut anyhow. He indicated the mass was encased in a sac, was quite large (about 2" round) and was quite deep, but he was able to 'pop it out' all in one piece (he said this was a good sign). They sent the tumor out to pathology to identify exactly what it was and expected the results to be back in 7 to 10 days.
Much to our surprise, the doc called Friday the 17th with preliminary results which found it to be a fibrous tumor and benign in nature. He STRESSED these were preliminary results and final results would be a bit longer to come in. We were quite relieved with this news and fully expected this to be the end of our little 'scare'.
Unfortunately, on Monday, July 27th the doc called with the final pathology report from the Mayo Clinic. He said there was a slight change and at that point Mick and I both had a sinking heart. He explained the tumor had been identified as low grade malignant myofibroblastic sarcoma. Basically a cancer of the muscle tissue that normally doesn't spread aggressively. We have an appointment on August 6th with the Oncologist and will have a better idea of our road map after that hopefully.
I want to share the journey through this challenging chapter of our lives. Perhaps it will be more therapeutic for me, but at the same time will help to share information and updates as to what is going on.
First, let's bring everyone up to speed.
In late June I noticed a 'bump' to the left of Lola's center-back neck. At first I figured it was nothing and would wait for it to go away by itself, thinking it was just a cyst or something minor. After sleeping on it for a night and something not feeling just right, I made an appointment the next day for Lola. During Lola's appointment, June 30th, her doc had no idea what the bump was and called in for a consult from one of her partners. He also had no idea. They collaborated and decided it would be best to refer Lola over for a surgery consult. The second doc made a hand signal (similar to wheels on the bus) indicating we should get her over there pretty quick. Before that appointment, Lola had some blood work done and also had to undergo an ultrasound test to provide additional info for the surgery consult. The blood work came back normal, so we had a little relief about that (it ruled out Lukemia).
The Surgeon consult appointment took place on July 6th and he ordered a MRI for Lola which was done on July 13th. Results from that were inconclusive, so the doc wanted to biopsy the lump. Lola went in on Wednesday, July 15th for surgery. She was in surgery for over an hour and instead of just a biopsy of the lump, the doc decided it was best just to remove the entire thing since she was already sedated and he had to cut anyhow. He indicated the mass was encased in a sac, was quite large (about 2" round) and was quite deep, but he was able to 'pop it out' all in one piece (he said this was a good sign). They sent the tumor out to pathology to identify exactly what it was and expected the results to be back in 7 to 10 days.
Much to our surprise, the doc called Friday the 17th with preliminary results which found it to be a fibrous tumor and benign in nature. He STRESSED these were preliminary results and final results would be a bit longer to come in. We were quite relieved with this news and fully expected this to be the end of our little 'scare'.
Unfortunately, on Monday, July 27th the doc called with the final pathology report from the Mayo Clinic. He said there was a slight change and at that point Mick and I both had a sinking heart. He explained the tumor had been identified as low grade malignant myofibroblastic sarcoma. Basically a cancer of the muscle tissue that normally doesn't spread aggressively. We have an appointment on August 6th with the Oncologist and will have a better idea of our road map after that hopefully.
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