The tests have come back on the biopsies and there is no cancer in what they removed from Aly's brain! THANK THE LORD! It seems the chemo did the job on the cancerous portion of the tumor and the remaining was just dead cells. It would've been nice to have been able to figure this out without having to do this complicated surgery though! The sample they took from her frontal lobe, the new growth area that was showing, was just blood. They believe the other areas are the same. They are planning to do another MRI today to see what the status is on the other areas. It is possible that there was some bleeding that took place and that could be a result of low platelet counts after chemo. We will have to wait and see.
Aly is still on the mend. Her eyes have been swollen shut for the last couple of days. She is not a happy camper. She has been very quiet and withdrawn. I think there is a lot going through her little head. I can only guess she is concerned about her eye sight. When she came out of surgery and woke up, she could see fine out of her right eye, there was some limited vision in her left. Yesterday, when they lifted her lids to check vision, she could not see anything out of her right eye and still limited in the left. We are praying now that the vision is restored in both. We won't know for a while until the swelling goes down and she is further along in the healing process. It would be awful if she has to go back to the limited vision after the vast improvement she had. She is also angry about having to get up out of bed when she wants to rest and she has to go through this breathing exercise to exercise her lungs to avoid pneumonia and that makes her head hurt so she has been fighting us on that as well.
Thank you all for your prayers! I know they've been helping. Please continue to pray for Aly's recovery.
Thursday, August 11, 2011
Tuesday, August 9, 2011
tuesday
Aly is doing as well as can be expected after such an intensive surgery. Dr. McCue, the neurosurgeon stopped by bright and early this morning. He said he is seeing some vision loss in both eyes today from the tests he is doing with Aly. He is hoping it is due to swelling from the surgery and will come back as the healing process continues. He said he had to "bang hard" on the eye nerves to remove as much tumor as possible. Aly's right eye is swollen shut and is turning purple. She is complaining of some jaw pain and just general head pain. We have been told all is to be expected. Her incision went from just above her right ear to just past the middle of her head just above the hair line. It is amazing what procedures can be done now days! I can't imagine ever being a doctor and being able to do something like this.
Yesterday, we asked how long Aly will be in the hospital. He said a typical hospital stay for this procedure is anywhere from 4 days to 2 weeks. He said, "knowing Aly and the way she is looking already, it will be 4 days." We'll see. Hopefully he is correct in that, but we won't push it! They had put IV's in both arms even though she has the IV port in her chest. She was not happy to hear they would have to do that, but both were taken out now, so she is more comfortable. She is sleeping/resting most of the time, but comes around and asks for drinks of water occasionally. She is remarkable, that's all I have to say! :)
Yesterday, we asked how long Aly will be in the hospital. He said a typical hospital stay for this procedure is anywhere from 4 days to 2 weeks. He said, "knowing Aly and the way she is looking already, it will be 4 days." We'll see. Hopefully he is correct in that, but we won't push it! They had put IV's in both arms even though she has the IV port in her chest. She was not happy to hear they would have to do that, but both were taken out now, so she is more comfortable. She is sleeping/resting most of the time, but comes around and asks for drinks of water occasionally. She is remarkable, that's all I have to say! :)
Monday, August 8, 2011
Out of surgery
Aly came out of surgery and is doing good. The neurosurgeon removed the new growth in the frontal lobe and also removed as much as he could of her original tumor. At first glance and after initial testing neither look cancerous. It will take a couple of days to make a final determination. All of the new growths have gotten smaller since the last MRI, so we are hoping these are all good signs.
The surgeon said that the remaining original tumor was still inteferring with her eye nerves so she may have loss of vision on her left side due to removal. He is hopeful that if she does, that it may come back after healing. We will not be sure until she wakes up and he can examine her. She also has a cyst still remaining on her brain stem which they could not remove without fear of dire consequences but he said it is the same consistency of the original tumor he removed, so there is a good chance that if the original tumor is no longer cancerous this would not be cancerous either and would be treatable with the radiation. We just need to wait for results.
The other issue he confirmed was that her pituitary gland is not functional and will not be functional, meaning Aly will continue to have to monitor her diabities insipidus and she will need hormone therapies as well as thyroid medications throughout her life.
The surgeon said that the remaining original tumor was still inteferring with her eye nerves so she may have loss of vision on her left side due to removal. He is hopeful that if she does, that it may come back after healing. We will not be sure until she wakes up and he can examine her. She also has a cyst still remaining on her brain stem which they could not remove without fear of dire consequences but he said it is the same consistency of the original tumor he removed, so there is a good chance that if the original tumor is no longer cancerous this would not be cancerous either and would be treatable with the radiation. We just need to wait for results.
The other issue he confirmed was that her pituitary gland is not functional and will not be functional, meaning Aly will continue to have to monitor her diabities insipidus and she will need hormone therapies as well as thyroid medications throughout her life.
Operating
Aly went in the operating room around 9am. I went in with her and was there until they put her to sleep. In true Aly fashion she kept sticking her tongue out at me. Purely a sign of affection, I know. The gas makes her giggle and that is the best way to go to sleep! It sounds like this will be a lengthy surgery. I will update when I can.
Update3:30...still in surgery have only gotten general updates that things are going smoothly. The nurse has been calling us every couple of hours.
Update3:30...still in surgery have only gotten general updates that things are going smoothly. The nurse has been calling us every couple of hours.
Saturday, August 6, 2011
Saturday
This weekend we have been focusing on Aly, of course. We have been making sure she gets to do what she wants to do as much as we can! Yesterday, she wanted to go tubing but none of her close friends were around (that like to go tubing) to invite along, so she went with her 2nd choice. She invited her good friend Maddie B. to join us in a visit to Dave & Busters. They had a blast. It is funny that they ate the same things for dinner and wanted the exact same prizes after playing games. Gotta love those big ties! They are so cute. Maddie also stayed for a sleepover last night. The other things on Aly's wish list are to vacuum out a car and to go golfing. I know, odd choices right? So, this morning she vacuumed Kevin's truck. Aly loves to help, loves to be organized. She needs to give some lessons to her big brother! :) The other choice she made, golfing, is still making me go, "hmmm." Kevin, Tom and I love to golf. I'm thinking she wants to golf because we love it so much. She hates it. She's always hated it. Usually, we've had her come along, because we couldn't leave her at home alone, and she would be so bored just sitting on the golf cart. She never wanted to golf. She's tried it. She has her own golf clubs. She is really good at hitting the ball, but she just doesn't like it. So, this is why I say, "hmmm..." I think we will go on Sunday. It is supposed to be stormy this afternoon. Sunday is supposed to be nice, cooler weather.
We also have to make a trip to the hospital this weekend for blood tests to get ready for Aly's surgery. Everything has been confirmed and we are scheduled for early Monday morning. We have to be there at 6am! We are not sure how long the surgery will take, sounds like a long process. I will try to post as soon as we know what is happening...Please keep the prayers flowing.
Thursday, August 4, 2011
scenarios
Meeting with neurosurgeon done...They have to firm some things up, but it looks like Aly's surgery will take place on Monday! We got a little mis-information in that this new tumor they found is on her right side and not the left, which makes things a little easier but there are several different scenarios. All will involve surgery and they will remove the new tumor first so they can figure out exactly what they are dealing with before proceeding. I'll go best to worst:
1. One explanation is the one that I've mentioned, that they are looking at these new spots being an infection. It may be a type of fungal infection which the neurosurgeon has seen before in other cancer patients. It is more common in brain tumor patients who have gone through chemotherapy and their immune system has been compromised because of the chemo. This would be the best case scenario as it is treatable with antibiotics. When we asked about other symptoms of infection not showing, he said it depends on what type of fungus it is. There are many and not all show symptoms. When the new tumor is removed and if they find it is a fungus, the surgeon will not go any further at this point. He will close the surgery and Aly will be treated for the infection before anything else takes place. He said he would not want to take a chance of spreading the infection.
2. Another explanation is that it is the germ cell tumor spreading. If that is the case, he will remove the new tumor and go on in and also remove what is left of the original tumor. The other areas are too deep into the brain and would be too dangerous to operate on so they would not try to remove them. Once Aly has recovered she would continue on the path of radiation. It sounds as if they would target these new areas of growth as well as the original spot.
3. The last and worst scenario is that this may be a different type of cancer all together. If this is the case it is an aggressive one. They/we will have to make further decisions on how to handle it.
In any case, the surgeon said doing this surgery is Aly's best chance. He said if there were any question in his mind he would not proceed in doing the surgery. He said he will go in "with a happy heart" because he knows this is the best thing to do in this case. They need to figure out what they are dealing with in order to know how to deal with it.
I continue to be amazed at Aly. She takes these detours like another day at the office. She hears the news and then comes home and wants to head right outside like it is no big deal. I just wish something in this process would go the way it is supposed to go. We've had so many things come up that aren't normal, that are rare, that throw us on an emotional roller coaster. Maybe we need to follow Aly's example and go with the flow. Take it one day at a time. It is not easy in the adult world though!
JUST KEEP PRAYING PLEASE!
1. One explanation is the one that I've mentioned, that they are looking at these new spots being an infection. It may be a type of fungal infection which the neurosurgeon has seen before in other cancer patients. It is more common in brain tumor patients who have gone through chemotherapy and their immune system has been compromised because of the chemo. This would be the best case scenario as it is treatable with antibiotics. When we asked about other symptoms of infection not showing, he said it depends on what type of fungus it is. There are many and not all show symptoms. When the new tumor is removed and if they find it is a fungus, the surgeon will not go any further at this point. He will close the surgery and Aly will be treated for the infection before anything else takes place. He said he would not want to take a chance of spreading the infection.
2. Another explanation is that it is the germ cell tumor spreading. If that is the case, he will remove the new tumor and go on in and also remove what is left of the original tumor. The other areas are too deep into the brain and would be too dangerous to operate on so they would not try to remove them. Once Aly has recovered she would continue on the path of radiation. It sounds as if they would target these new areas of growth as well as the original spot.
3. The last and worst scenario is that this may be a different type of cancer all together. If this is the case it is an aggressive one. They/we will have to make further decisions on how to handle it.
In any case, the surgeon said doing this surgery is Aly's best chance. He said if there were any question in his mind he would not proceed in doing the surgery. He said he will go in "with a happy heart" because he knows this is the best thing to do in this case. They need to figure out what they are dealing with in order to know how to deal with it.
I continue to be amazed at Aly. She takes these detours like another day at the office. She hears the news and then comes home and wants to head right outside like it is no big deal. I just wish something in this process would go the way it is supposed to go. We've had so many things come up that aren't normal, that are rare, that throw us on an emotional roller coaster. Maybe we need to follow Aly's example and go with the flow. Take it one day at a time. It is not easy in the adult world though!
JUST KEEP PRAYING PLEASE!
Tuesday, August 2, 2011
Further testing
Aly went to the hospital today to have a CT scan done of her whole body. They wanted to see if it would help give them answers. It gave some answers but not others. The CT scan of her body, other than her head, was clear of tumors, which means the cancer has not spread anywhere else. Her blood markers are at a normal level and as I think I mentioned last time, the spinal fluid is also clear of cancer cells. So, this new tumor and "hot spots" are not making sense. Typically with the type of tumor Aly has (the original one) any spreading that they see is through the spine. They just aren't sure why they are seeing this new tumor that grew but yet the original tumor remained the same size, plus the fact that the blood markers are normal whereas they were elevated upon the original diagnosis. The major problem is the fact that the tumors are in the brain. If they were anywhere else they could remove them rather easily and do a biopsy to see for sure what we are dealing with. We will be meeting with the neurosurgeon on Thursday and hopeful gain more insight and possibly come up with a plan of action.
This girl is a medical mystery. If you see her and talk with her you wouldn't know anything was wrong other than her missing hair. On that note, her hair and eyelashes are already starting to grow. She is so happy about that! She's been so much like the Aly we used to know before this journey began. She is very chatty, silly and happy. We took her to the Waterpark of America on Saturday. We wanted a total break from all this medical stuff if only for one day. It was just our family, Kevin, me, Tom and Aly. Aly had more energy than the rest of us. She couldn't get enough. Why is it as you get older, you get more dizzy on rides? I went down one tube slide and my tube spun around so I ended up going down the whole slide backwards! That about made me sick. It was, however, a very enjoyable day. A lot of laughs and smiles. Something that we all needed! We stopped for a nice dinner as well. Aly didn't each much. She still is not eating a lot, but she is at least eating more food and we are not having to rely on the formula for her main calories.
This girl is a medical mystery. If you see her and talk with her you wouldn't know anything was wrong other than her missing hair. On that note, her hair and eyelashes are already starting to grow. She is so happy about that! She's been so much like the Aly we used to know before this journey began. She is very chatty, silly and happy. We took her to the Waterpark of America on Saturday. We wanted a total break from all this medical stuff if only for one day. It was just our family, Kevin, me, Tom and Aly. Aly had more energy than the rest of us. She couldn't get enough. Why is it as you get older, you get more dizzy on rides? I went down one tube slide and my tube spun around so I ended up going down the whole slide backwards! That about made me sick. It was, however, a very enjoyable day. A lot of laughs and smiles. Something that we all needed! We stopped for a nice dinner as well. Aly didn't each much. She still is not eating a lot, but she is at least eating more food and we are not having to rely on the formula for her main calories.
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