Next Appt: Feb 7th

We will be backing off to scans every 4 - 6 months, per the doctors office. The doctor still wants to see Lola in his office in a few months so we have set an appointment for Feb 7th. I would expect the next scan to be in the May time frame. Happy trails until then!

There's been too much serious posts lately, so I thought I had better add a photo of Lola and Haley for entertainment value.

Scan Results: "Everything is stable"

I spoke to the Oncologist's office today and they told us that the MRI scan came back fine and everything is stable. Since, for the last year, we have been going every three months for an MRI to monitor her and have seen no recurrance, hopefully we can back off the regularity of these MRIs. They are tough on Lola and mom! The doctor should be contacting us by early next week with what our next followup appointment needs to be.

Upcoming Scan

I neglected to update the blog with our next scheduled scan date, which is this Friday the 19th. I won't be mentioning this appointment to Lola until that morning, for obvious reasons. Last scan we went to a new hospital, so there were plenty of new distractions and the visit went pretty smooth for Lola with minimal crying -- I swear the scan and preparations for them are harder on me than on her. As usual she will need to be sedated, which means an IV needle in her arm and then she will be carried away by the nurse while still awake. This is the hardest part for both her and me.
This time I am coming prepared with a new Unicorn Pillow Pet that Lola has been begging all relatives for, for her Christmas present. I will have this hidden until the time she needs a little distraction and lift in spirits. Hopefully it will do the trick!

Test Results

The doctor called today to discuss the test results. All pretty good news in that the blood work that was done at All Children's came back within the normal range along with no significant findings on the chest xray. The doc has much more confidence in the lab work that is done at the hospital than what comes out of the blood tests that are done in the doctors office. Lola's LDH reading that was done in the office could have been raised by the method in which the blood sample was obtained, which could damage the structure of the blood. A sinus infection could also affect it. I asked many questions related to the office tests and hospital tests and feel satisfied with the answers received. That in addition to the MRI results showing everything to be stable, we will stay the course and plan on Lola's next scan in 4 months.

I've been reading a lot about sarcomas and found a journal about a little girl that has also been fighting this type of cancer. What her mom wrote about the regular MRIs hit pretty close to home:
"the fear of recurrence fades in the months between scans and returns as the date of the scan approaches, then good news from the scans relieves the fear for a couple more months until the next one approaches, and so the cycle goes."
With that said, we're breathing a sigh of relief for now. Next scans will be done in early November.

1 Week Later

The MRI and Xrays went as planned last week. We've been waiting on the results from the doctor. I called Lola's Oncologist office Thursday morning and had to leave a message with the answering service since the office had been 'displaced' I was told. Come to find out all that meant is there were so many people in the office out on vacation that they had everyone who wasn't on vacation working at another office. (hrumph).
Thursday afternoon I received the medical records from All Children's Hospital and it contained the report from the MRI. Lots of medical terms that I didn't quite understand, but the 'Impression' that was noted on the report was 'Paranasal Sinus Disease'. Of course I immediately went out on the internet and researched what that meant. Definitions ranged from a sinus infection to cancer within the sinus cavity. Of course I realize that sometimes too much information and what you read on the internet is not always a good thing, so we are not panicking over this, until we speak further with the Oncologist.

I received a call back on Friday from the Oncologist's Medical Assistant telling me that the MRI looked stable. She made no mention of anything else from the MRI report and she wasn't aware that I had received a copy of it. I believe she thought the bit of information she shared with me would satisfy things. This is not the case. Apparently there was another doctor in the practice that reviewed the MRI and signed off on it with this result so she could call me. This doctor obviously was not aware of the elevated LDH levels, nor did he or the MA know that we had additional blood work done at the hospital on Friday and also an Xray of her chest. I pressed the MA for further information about these tests and for the doctor to address the root issue which is the elevated LDH levels. The doctor had already left the office for the day, so she is going to have him call me on Monday to discuss further. (double hrumph)

I'm hopeful that a simple explanation is that she has a basic sinus infection which could cause an elevation in LDH levels (not really sure if this is possible, but one can hope!) . This would certainly relieve some of our worry, but I continue to question why Lola's LDH levels have never returned to the normal range since her resection last year. My gut instinct tells me that something is festering. Worst case scenario is that we will be in for a barrage of tests to gain further information.

More when we get it.

MRI is scheduled

Lola is scheduled for Friday July 9th at All Children's Hospital for her MRI and chest xray. I've decided to switch over to All Children's Hospital from St. Joseph's because I have been told by several people how great the staff and care is at All Children's. Lola is getting older and has her opinions about going to the hospital for these tests, so hopefully things will go smoother there.

More tests

Not the best news yesterday at the Oncologist appointment, as we had blood work done and Lola's LDH levels are heading in the wrong direction, coming in at 397 (192 and below is normal). We're in the process of getting scheduled for an MRI and chest xrays to see if there is any obvious cause of this. Because she needs to be sedated, this probably won't be until the beginning of July. So right now, it's hurry up and wait.

Next Dr. Appt

Just an update that we have a regular check-up Oncologist appointment set for June 21st. Stay tuned.

MRI went as scheduled last week. I called the Dr.'s office on Thursday of this week to get the results, as I didn't hear anything. I spoke to the MA and she looked up the report from the MRI and found everything to be "stable". This is as good of news as we could hope for. Obviously, we would be happier if the LDH levels were in the normal range, but for now we'll wait for the next three month checkup and hope to see a drop to within the normal range.

MRI is scheduled

We have an appointment for first thing on March 5th for Lola's MRI scan. We have to be at the hospital at 6AM so they can prep her for sedation. The usual no food or drink prior applies, so at least having it this early will help with that!

After some time away for the blog it is time for an update. I didn't hurry to post any updates since our last appointment in November, as there wasn't really any alarming news to share. The November appointment consisted of a physical checkup by the doctor and some bloodwork. The bloodwork came back pretty good, with the LDH levels (which, as I understand it, is what is used to measure the cancer levels) reading just a little above normal (normal range being 192 as the high end). Lola's LDH was 194. The doctor felt the level was still a little high from her surgery and felt it would continue to drop. Again, this was back in November.

Today we had another checkup during which the doc felt for any new lumps (he didn't find any--yay) and shared what he felt the next steps were. First he wanted to schedule her for another MRI just for monitoring purposes. He also wanted to get new blood tests done since the LDH level was a little high last time. He explained the MRI would catch anything new, before the blood tests would. This is because a rise in the LDH level is normally a late indicator of any new sarcoma growth. Yet he said he would feel better getting a new blood test that showed the LDH in the complete normal range. I think he felt strongly that this is what we would have seen. Unfortunately, the blood test done today came back with the LDH level a bit higher than last time at 212. For now, we are going to stay the course and have an MRI completed so that we might get a better idea of what is going on.

Not exactly the news we were hoping for. The doctors office is going to get the MRI scheduled and I'll update on any further news as we get it.