Megan had a third spinal tap/lumbar puncture (LP) last Friday, May 20. It went pretty smoothly. We knew the nurses, and of course the same registration lady, so it was all pretty easy. They gave her a full bag of fluid before the LP, which helps prevent too much headache from taking the fluid out of her head. The GI Dr. came in and visited with us because nothing had helped with the stomach issues. She was very nice. She decided to put her on a 24 hour IV pump for Zophran to hopefully get her nausea under control and also IV Pepcid to help with the stomach pain. While she was under for the LP, the nurse accessed her port so she wouldn't have to deal with having it done. She is such a baby about her port and just hates it, so this was the best answer. And, the nurse did it with no problems and got it in on the first try and Megan slept through the whole thing.
Dr. Hanson did the LP again and this time her pressure was just a tad higher than 3 weeks ago. So he took her from 43 down to 14 this time. Because he took off so much fluid, he gave her another whole bag of fluid after the LP, which he hadn't done the last 2 times. They were hoping this would really help with her head pain and pressure.
So we went home and the Home Health nurse came right in the middle of our Girl Scout meeting. It took us over an hour to go through everything and learn how to use the equipment and medicines. So Gary and Lynn started grilling the burgers and dogs while we hooked Megan up to her new appendage. Then we finished with our Girl Scout celebration of finishing our silver award work and having our parents meeting to plan everything for the silver award project.
So, later Friday night Megan's port started leaking the fluid from the IV. I tried taping it down more, but it just kept leaking. So the nurse cam out on Saturday morning and had to re-access her port. Not a pretty sight! Megan was very upset and just had a big fit. But, after an hour's worth of Emla cream, she finally let the nurse put in the needle - and she hardly felt it - and she got it in on the first try. I call that good!! The best news of all though is that the IV Zophran is working and keeping her from having any nausea, which was literally driving her nuts. Thank God! The pepcid seems to finally be working some too and keeping the stomach pain from being quite so bad. Yippee!!
Thursday, May 26, 2011
Tuesday, May 17, 2011
Endoscopy - May 13 - 17
On Friday, May 13 - Yes, Friday the 13th - we went back into St. John's for the upper endoscopy. First thing, the registration lady knew us, so we flew right through that part. Then we walked back into the treatment area and headed to our room and saw that we had the same nurse we had for the last lumbar puncture and one day when inpatient last week. Too funny. And she is the nurse whose cousins live in my old house that I grew up in on Milentz. They are the people who bought it from us in 1986 and they still live there. Small world. So it was nice chatting with her again and made things very comfortable for Megan.
Megan didn't like that she forgot to use her Emla numbing cream for the IV and they didn't have time to let her put it on since it takes 30 minutes to work. So she crabbed and fussed about it, but she was ok. They took her back just 20 minutes late and before I could even hardly do anything, the doctor was back with pictures of her esophagus and stomach. Her esophagus looked great and the tissue of the stomach looked great, but her stomach was lined with her food from last night's dinner. Food should be out of our stomach after just 4 hours and hers wasn't. So the doctor said Megan's stomach has stopped contracting sending her food on through her system, which sometimes happens when kids are having chemo or taking a lot of meds. She suggested Megan try taking eurythromyocin for two weeks, 20 minutes before each meal, 4 times a day. If this medicine doesn't work, then she will treat it like an irritable bowel syndrome. They also did a biopsy while they were in there, which is standard.
So Megan started taking the medicine on Friday night, but as of Monday, her stomach pain and nausea weren't any better and she's even puked a couple of times. So I called the doctor on Monday and heard back on Tuesday. She said that she can't do anything else until the biopsy results are back. She said to take Mylanta up to 6 times a day, 20 minutes before each time she eats. So, I guess we'll see what happens.
The nurse practitioner from MD Anderson called Monday. They got her results from her thyroid blood tests that they did on Friday while she had in an IV getting the endoscopy done. Her one level was good but her other level was just a tad too high, so they are having her taking an extra 1/2 a pill a week. The medicine helps kill off the cancer and helps it from reoccurring, so they want the numbers to be exactly where they want them. We also talked about her next visit. I'd like to go down there the second week of August, not Oct. 3 as we are currently scheduled. (A MD Anderson daily schedule just came in the mail with our appointment times all ready for us.) The endocrinologist had said end of summer or 6 months, so I thought I'd ask. I just hate to get more into school again and really upset her 8th grade year, especially if she has to have surgery while she's down there to remove another tumor that's on the left side of her neck. The nurse practitioner said that would probably be fine since they like to see patients 3 to 6 months post surgery and 6 months would be the end of July. He's on vacation this week and she's on vacation next week, so it will be a few weeks before she gets back to me, but she said that it seemed likely to be ok.
I called the neurologist today to see when he would like her to have the third lumbar puncture done. His office called back and said they are arranging it with the oncologist to do it again. So we wait for another phone call with a date and time. Until then, at least the head pain only happens when she lifts anything too heavy, but her stomach pain is fairly constant, but worse at some times than others. She is trying not taking the flexerel for the muscle pains, which the diomox (pill for pseudo tumor) gives her. We'll see if we need a refill. Still taking Vitamin D once a week. Now she has a cold that I gave her, so she's taking cold medicine too. Stuffy nose is no fun. I've been fairly miserable for over a week. I think we're both ready to feel better soon.
Megan didn't like that she forgot to use her Emla numbing cream for the IV and they didn't have time to let her put it on since it takes 30 minutes to work. So she crabbed and fussed about it, but she was ok. They took her back just 20 minutes late and before I could even hardly do anything, the doctor was back with pictures of her esophagus and stomach. Her esophagus looked great and the tissue of the stomach looked great, but her stomach was lined with her food from last night's dinner. Food should be out of our stomach after just 4 hours and hers wasn't. So the doctor said Megan's stomach has stopped contracting sending her food on through her system, which sometimes happens when kids are having chemo or taking a lot of meds. She suggested Megan try taking eurythromyocin for two weeks, 20 minutes before each meal, 4 times a day. If this medicine doesn't work, then she will treat it like an irritable bowel syndrome. They also did a biopsy while they were in there, which is standard.
So Megan started taking the medicine on Friday night, but as of Monday, her stomach pain and nausea weren't any better and she's even puked a couple of times. So I called the doctor on Monday and heard back on Tuesday. She said that she can't do anything else until the biopsy results are back. She said to take Mylanta up to 6 times a day, 20 minutes before each time she eats. So, I guess we'll see what happens.
The nurse practitioner from MD Anderson called Monday. They got her results from her thyroid blood tests that they did on Friday while she had in an IV getting the endoscopy done. Her one level was good but her other level was just a tad too high, so they are having her taking an extra 1/2 a pill a week. The medicine helps kill off the cancer and helps it from reoccurring, so they want the numbers to be exactly where they want them. We also talked about her next visit. I'd like to go down there the second week of August, not Oct. 3 as we are currently scheduled. (A MD Anderson daily schedule just came in the mail with our appointment times all ready for us.) The endocrinologist had said end of summer or 6 months, so I thought I'd ask. I just hate to get more into school again and really upset her 8th grade year, especially if she has to have surgery while she's down there to remove another tumor that's on the left side of her neck. The nurse practitioner said that would probably be fine since they like to see patients 3 to 6 months post surgery and 6 months would be the end of July. He's on vacation this week and she's on vacation next week, so it will be a few weeks before she gets back to me, but she said that it seemed likely to be ok.
I called the neurologist today to see when he would like her to have the third lumbar puncture done. His office called back and said they are arranging it with the oncologist to do it again. So we wait for another phone call with a date and time. Until then, at least the head pain only happens when she lifts anything too heavy, but her stomach pain is fairly constant, but worse at some times than others. She is trying not taking the flexerel for the muscle pains, which the diomox (pill for pseudo tumor) gives her. We'll see if we need a refill. Still taking Vitamin D once a week. Now she has a cold that I gave her, so she's taking cold medicine too. Stuffy nose is no fun. I've been fairly miserable for over a week. I think we're both ready to feel better soon.
May 9 - 12 - Neurosurgeon
Megan had been taking the Protonax, but it sure didn't seem to help any. So on Tuesday I called the GI doctor back and they scheduled an upper endoscopy for Friday, May 13.
Megan had been taking another round of Prednisone and she just finished her two week taper. (Which means she starts off on a high dose and gradually decreases over 2 weeks.) This round of Prednisone seemed to work pretty well. By the time she was out of the hospital, her head pain was virutally gone. But, the neurologist said it was probably time to talk to a surgeon. I was hoping we could see one when Megan was inpatient again last week, but they don't have one on staff. I can't believe St. John's doesn't have a pediatric neurosurgeon. Weird. So, I called the neurosurgeon that the neurologist recommended on Monday to see about an appointment and left a message. On Wednesday, their office at Children's Hospital called me back to schedule an appointment and they happened to have a cancellation the next day, so I grabbed it. Megan and I both were a little nervous about seeing a neurosurgeon and, of course, the possibility of more surgery.
We got to Children's on Thursday, and the first thing we saw was a dalmation dog with a clown party hat and glasses and a big red clown nose on her. She was just the sweetest dog ever. Megan was petting her and I took their picture together. A very sweet way to start the day was meeting the Children's Hospital dog. It actually lives at the hospital!
But then we sat in the doctor's office for 2 hours waiting. They put us in the room and said he's be right in. 90 minutes later I went and asked if something had happened. That's when she let me know that he'd had an emergency and was running behind. And you couldn't have let us know???? Megan was in total pain the whole time and then was getting hungary. His nurse practitioner came in and asked questions about her pseudo tumor, cerebral vein thrombosis and cancer. She looked in her eyes and was still able to see all the pressure in her brain. She was very nice. Then the doctor came in. He seemed younger than I would have thought he'd be, but was very direct and nice (and apologetic for being soooo late). He said it is very common for a pseudo tumor to occur from a jugular being tied off. The doctors we saw at MD Anderson and St. John's didn't think so, but of course they weren't neurosurgeons, so who knows. He asked questions about her last two lumbar puncture's (spinal tap), her pressures, head pain, etc. She hadn't really gotten any relief from the LP's, which is concerning, but he said Prednisone isn't a long term solution, of course. Then he said he would talk to our neurologist at St. John's and together they would come up with a plan. He also said he wanted the notes from the opthomologist that Megan has been seeing. She hasn't seen him in a month, but not much has changed. So, I called his office and got that arranged.
Megan had been taking another round of Prednisone and she just finished her two week taper. (Which means she starts off on a high dose and gradually decreases over 2 weeks.) This round of Prednisone seemed to work pretty well. By the time she was out of the hospital, her head pain was virutally gone. But, the neurologist said it was probably time to talk to a surgeon. I was hoping we could see one when Megan was inpatient again last week, but they don't have one on staff. I can't believe St. John's doesn't have a pediatric neurosurgeon. Weird. So, I called the neurosurgeon that the neurologist recommended on Monday to see about an appointment and left a message. On Wednesday, their office at Children's Hospital called me back to schedule an appointment and they happened to have a cancellation the next day, so I grabbed it. Megan and I both were a little nervous about seeing a neurosurgeon and, of course, the possibility of more surgery.
We got to Children's on Thursday, and the first thing we saw was a dalmation dog with a clown party hat and glasses and a big red clown nose on her. She was just the sweetest dog ever. Megan was petting her and I took their picture together. A very sweet way to start the day was meeting the Children's Hospital dog. It actually lives at the hospital!
But then we sat in the doctor's office for 2 hours waiting. They put us in the room and said he's be right in. 90 minutes later I went and asked if something had happened. That's when she let me know that he'd had an emergency and was running behind. And you couldn't have let us know???? Megan was in total pain the whole time and then was getting hungary. His nurse practitioner came in and asked questions about her pseudo tumor, cerebral vein thrombosis and cancer. She looked in her eyes and was still able to see all the pressure in her brain. She was very nice. Then the doctor came in. He seemed younger than I would have thought he'd be, but was very direct and nice (and apologetic for being soooo late). He said it is very common for a pseudo tumor to occur from a jugular being tied off. The doctors we saw at MD Anderson and St. John's didn't think so, but of course they weren't neurosurgeons, so who knows. He asked questions about her last two lumbar puncture's (spinal tap), her pressures, head pain, etc. She hadn't really gotten any relief from the LP's, which is concerning, but he said Prednisone isn't a long term solution, of course. Then he said he would talk to our neurologist at St. John's and together they would come up with a plan. He also said he wanted the notes from the opthomologist that Megan has been seeing. She hasn't seen him in a month, but not much has changed. So, I called his office and got that arranged.
Friday, May 6, 2011
3 Days in the Hospital
Megan has continued to have very bad stomach pains and nausea. The neurologist suggested she see a GI (Gastroenterologist). I couldn't get in contact with the office after numerous phone calls over two days time, so I decided we would just go to the ER since it should expedite things. After 7 hours in the ER receiving fluids, IV meds, and xrays, they decided to send us up to a room. The next day we sat around waiting and finally the GI doctor came by and ordered a gall bladder test. As soon as we figured out the test, scheduling and such, the nurse found out that she couldn't have the test because they had just given her pain medicine and she couldn't have the test with food or pain meds, which she had had both. So basically we just hung around the hospital all day until the next morning she could have the test. It was a 90 minute nuclear test to see if the gall bladder is working. Funny thing was that it was the same kind of scan machine that did her thyroid scan at MD Anderson. She just had to lay still for the 90 minutes while they did an initial scan and then injected some kind of nuclear medicine in her IV and then did a long scan.
Kelsey got to go down to the play room and work on a mother's day project the art therapy program had scheduled. She was as happy as ever getting to decorate 4 cookies and then make a very cool cookie bouquet. She was very sweet and got all the materials together for Megan to make one in her room once she came back from her test. Together they worked on Megan's cookies and we hung out, and had lunch. Megan was glad to finally be well enough to go so the pantry for the first time - where they have free drinks and snacks. She was able to get her own slushee. :) She also saw the Ronald McDonald House room finally. They have two lovely living room areas, kitchen with snacks and food, showers and computer area. Very nice and free. We also saw many of the same nurses, techs, transporters, house keeping and chaplain that we made friends with during our last visits. A couple of nurses came in just to say hi to Megan and we had some of the same ones helping us again. It almost felt comfortable, not like being in a dreaded place, which is nice.
Later the nurse came in and told us the test came back fine so we could go home. They had been giving her a new medicine Protonax to hopefully help with her stomach pain, so they said to try the new medicine for a few days and if she isn't feeling better, to call the doctor and she would do an upper endoscopy, which is a camera going down her throat to look at her esophagus and stomach. So, we went home. Of course once we got home, the medicine she prescribed wasn't covered by insurance. 7 phone calls later back and forth between Walgreens and the doctor, we got it figured out. Walgreens didn't have the new medicine, but didn't bother to tell me that. So then they had to call it to another 24-hour Walgreens which of course was 15 minutes away - but I went out at midnight to get the medicine for her. FUN. But, glad to be home.
Kelsey got to go down to the play room and work on a mother's day project the art therapy program had scheduled. She was as happy as ever getting to decorate 4 cookies and then make a very cool cookie bouquet. She was very sweet and got all the materials together for Megan to make one in her room once she came back from her test. Together they worked on Megan's cookies and we hung out, and had lunch. Megan was glad to finally be well enough to go so the pantry for the first time - where they have free drinks and snacks. She was able to get her own slushee. :) She also saw the Ronald McDonald House room finally. They have two lovely living room areas, kitchen with snacks and food, showers and computer area. Very nice and free. We also saw many of the same nurses, techs, transporters, house keeping and chaplain that we made friends with during our last visits. A couple of nurses came in just to say hi to Megan and we had some of the same ones helping us again. It almost felt comfortable, not like being in a dreaded place, which is nice.
Later the nurse came in and told us the test came back fine so we could go home. They had been giving her a new medicine Protonax to hopefully help with her stomach pain, so they said to try the new medicine for a few days and if she isn't feeling better, to call the doctor and she would do an upper endoscopy, which is a camera going down her throat to look at her esophagus and stomach. So, we went home. Of course once we got home, the medicine she prescribed wasn't covered by insurance. 7 phone calls later back and forth between Walgreens and the doctor, we got it figured out. Walgreens didn't have the new medicine, but didn't bother to tell me that. So then they had to call it to another 24-hour Walgreens which of course was 15 minutes away - but I went out at midnight to get the medicine for her. FUN. But, glad to be home.
Tuesday, May 3, 2011
Ups and Downs
Sometimes it feels like we're on a teeter totter. I remember being a kid going to the drive in movies and always so glad to play up at front on the playground. You know, the old metal slides, merry go round and wooden teeter totter. I think I enjoyed the up and down back then, but not so much now as an adult.
Megan has had some good days lately, but then some really horrible days too. I keep hoping she's going to go back to school. She told a reporter from the Suburban Journal who wrote an article about Megan and Kelsey both, that she wanted to go back to school and be normal again and I just want that to happen for her so bad. It's been 4 months since she's been out of school. That's longer than a summer break, and we're almost upon the summer break.
She was finally able to have an MRI two weeks post-treatment to see what is going on in her brain. When they are in the middle of the test and they call the doctor to ask them to order two more kinds of detailed images based on what they saw, and then come out to ask my permission, you know it isn't good. Two days later we went to see the neurologist at St. John's. Good news and bad news. Good news is that the blood clots are all gone!! That's huge. That means she can come off the blood thinner cumadin that was giving her many nose bleeds a day and making her get weekly blood draws. Bad news is that the white shadowing on her brain didn't go away and so he gave her a definite diagnosis of Tuberous Sclerosis, which is what Kelsey was diagnosed with in December. (In December Kelsey had an MRI that found a small brain tumor, as well as the same white matter, tubors, that we already knew she had. On Jan. 4 they found small tumors in both of her kidneys also.)
The Dr. then also said that she most likely has a pseudo brain tumor. That is when the brain thinks it has a tumor, but it really doesn't. So the pressure keeps building with the increase in spinal fluid. So he recommended that she have a lumbar puncture, spinal tap, after being off the cumidan for a few days. He called the oncologist who agreed and so last Monday the oncologist did a second LP. (She had the first one while she was in-patient in February.) This time her spinal fluid level was a 42. A normal level is 10-12 and a pseudo tumor levels begins at 32. So he took off 1/2 her spinal fluid bringing her down to 21 cc's - so she still has twice as much as she is supposed to have.
So it was 5 days later and she was still feeling awful. I called the oncologist on Friday and he said she's in a vicious cycle and there really isn't anything else he can do for her. He thought maybe the dilaudid narcotic is making her so nauseous and have such bad stomach pains. So we tried staying off the dilaudid for the weekend and stick with 4 ibuprofin and 2 Aleve at each dosage. She seemed fairly ok on Friday afternoon and Saturday morning for the fundraiser at O'Charley's, (which was a blast!) but by Saturday afternoon she was bedridden again feeling awful. Her head pounds, ears hear machinery sounds in her head, eyes hurt and vision is blurry. Then she gets nauseous, has terrible stomach pains and is dizzy. So back to Dilaudid.
Our original plan in all this was to go back to school on Monday. So she had her friend Shelby spend the night with her on Sunday night and I took them to school in the morning and Shelby helped her inside with all her books that she'd had at home. She did great! She visited the nurse, did some reading work in the guidance office during first hour, went to her second hour and by then was feeling so horribly that they called me and the school counselor took her home. And that is where she has remained the last 2 days.
I called the neurologist yesterday afternoon and they decided to put her back on prednisone for two weeks to see if it will bring down the pressure in her brain. It took 7 phone calls to get it all figured out between having to get permission from the oncologist who said he wanted the neurologist to call it in. Then it never got to Walgreens. Then call back to see when it would be called in. Then Walgreens said they had it but the directions didn't make sense because it was a complicated tapering from high dose down to small dose over 14 days. So back and forth we went. UGH. I worked at home this morning waiting to get the medicine before I had meetings, but it never came through by 11:15. UGH. So she got it after I picked up Kelsey from after school homework help. Now tonight after taking her first 2 pills she says her face feels like it's all hard on the inside and it's all tingly. I called the exchange and the neurologist called me back. He is just so nice. He said that the tingly and hardness aren't anything to worry about. Heck, she's been tingly for months from being on the Diomox, but the hardness is weird. He said if the LP would have worked, she would have been better after a day. Sure wish I'd have know that. He said to give the prednisone 48 hours and if she isn't better by Thursday morning to call him and he will get us in to see a neurosurgeon. That's the next step. A possible shunt being placed in her brain to keep the spinal fluid from building up in her brain. He says, but if the LP didn't work, he's not sure a shunt would be the answer. But it might be time for a consult with the neurosurgeons.
Great. This is what we have been trying to avoid since we first found the brain issues. But, whatever it takes for her to feel better. It's been almost 4 months of constant pain. It has to come to an end. Both of us are just weakened by it all. Megan has kept such good spirits considering everything she's been through. But she's ready to feel better. She sent me an email one night at 11:45 when she just couldn't sleep because of the pain, and I was bugging her about going back to school. It just made me cry. "I hate that I never feel good and that I have no way of feeling good. You just don't get it that I really do not feel good and I feel like crap. I keep feeling like I am going to barf and I am so nauseous and I hate all this." So, if she doesn't go back to school this year, so be it. And if it's brain surgery she needs, then by golly we're there.
Megan has had some good days lately, but then some really horrible days too. I keep hoping she's going to go back to school. She told a reporter from the Suburban Journal who wrote an article about Megan and Kelsey both, that she wanted to go back to school and be normal again and I just want that to happen for her so bad. It's been 4 months since she's been out of school. That's longer than a summer break, and we're almost upon the summer break.
She was finally able to have an MRI two weeks post-treatment to see what is going on in her brain. When they are in the middle of the test and they call the doctor to ask them to order two more kinds of detailed images based on what they saw, and then come out to ask my permission, you know it isn't good. Two days later we went to see the neurologist at St. John's. Good news and bad news. Good news is that the blood clots are all gone!! That's huge. That means she can come off the blood thinner cumadin that was giving her many nose bleeds a day and making her get weekly blood draws. Bad news is that the white shadowing on her brain didn't go away and so he gave her a definite diagnosis of Tuberous Sclerosis, which is what Kelsey was diagnosed with in December. (In December Kelsey had an MRI that found a small brain tumor, as well as the same white matter, tubors, that we already knew she had. On Jan. 4 they found small tumors in both of her kidneys also.)
The Dr. then also said that she most likely has a pseudo brain tumor. That is when the brain thinks it has a tumor, but it really doesn't. So the pressure keeps building with the increase in spinal fluid. So he recommended that she have a lumbar puncture, spinal tap, after being off the cumidan for a few days. He called the oncologist who agreed and so last Monday the oncologist did a second LP. (She had the first one while she was in-patient in February.) This time her spinal fluid level was a 42. A normal level is 10-12 and a pseudo tumor levels begins at 32. So he took off 1/2 her spinal fluid bringing her down to 21 cc's - so she still has twice as much as she is supposed to have.
So it was 5 days later and she was still feeling awful. I called the oncologist on Friday and he said she's in a vicious cycle and there really isn't anything else he can do for her. He thought maybe the dilaudid narcotic is making her so nauseous and have such bad stomach pains. So we tried staying off the dilaudid for the weekend and stick with 4 ibuprofin and 2 Aleve at each dosage. She seemed fairly ok on Friday afternoon and Saturday morning for the fundraiser at O'Charley's, (which was a blast!) but by Saturday afternoon she was bedridden again feeling awful. Her head pounds, ears hear machinery sounds in her head, eyes hurt and vision is blurry. Then she gets nauseous, has terrible stomach pains and is dizzy. So back to Dilaudid.
Our original plan in all this was to go back to school on Monday. So she had her friend Shelby spend the night with her on Sunday night and I took them to school in the morning and Shelby helped her inside with all her books that she'd had at home. She did great! She visited the nurse, did some reading work in the guidance office during first hour, went to her second hour and by then was feeling so horribly that they called me and the school counselor took her home. And that is where she has remained the last 2 days.
I called the neurologist yesterday afternoon and they decided to put her back on prednisone for two weeks to see if it will bring down the pressure in her brain. It took 7 phone calls to get it all figured out between having to get permission from the oncologist who said he wanted the neurologist to call it in. Then it never got to Walgreens. Then call back to see when it would be called in. Then Walgreens said they had it but the directions didn't make sense because it was a complicated tapering from high dose down to small dose over 14 days. So back and forth we went. UGH. I worked at home this morning waiting to get the medicine before I had meetings, but it never came through by 11:15. UGH. So she got it after I picked up Kelsey from after school homework help. Now tonight after taking her first 2 pills she says her face feels like it's all hard on the inside and it's all tingly. I called the exchange and the neurologist called me back. He is just so nice. He said that the tingly and hardness aren't anything to worry about. Heck, she's been tingly for months from being on the Diomox, but the hardness is weird. He said if the LP would have worked, she would have been better after a day. Sure wish I'd have know that. He said to give the prednisone 48 hours and if she isn't better by Thursday morning to call him and he will get us in to see a neurosurgeon. That's the next step. A possible shunt being placed in her brain to keep the spinal fluid from building up in her brain. He says, but if the LP didn't work, he's not sure a shunt would be the answer. But it might be time for a consult with the neurosurgeons.
Great. This is what we have been trying to avoid since we first found the brain issues. But, whatever it takes for her to feel better. It's been almost 4 months of constant pain. It has to come to an end. Both of us are just weakened by it all. Megan has kept such good spirits considering everything she's been through. But she's ready to feel better. She sent me an email one night at 11:45 when she just couldn't sleep because of the pain, and I was bugging her about going back to school. It just made me cry. "I hate that I never feel good and that I have no way of feeling good. You just don't get it that I really do not feel good and I feel like crap. I keep feeling like I am going to barf and I am so nauseous and I hate all this." So, if she doesn't go back to school this year, so be it. And if it's brain surgery she needs, then by golly we're there.
Thursday, April 21, 2011
We ARE back :)
I guess I haven't really said much of how it all ended in Houston. Yes, we have been back for two weeks now. I can't believe it's already been that long. We never did get to do anything in Houston. Megan just felt sooo tired that all she saw was the inside of our room at the Ronald McDonald House. She didn't really get the chance, or really want to, get to know some of the people who were staying there with us. I have to say that so many of them touched me greatly. I know that doesn't say much about the treatment, but it affected me so much to hear so many stories of what families are dealing with. Mom's and dad's who fly back and forth taking turns staying in Houston. Grandma there with her teenage daughter who's baby is so ill. The African woman who's baby was born at 1 pound 10 oz with heart and lung issues. The teenage girl in a wheelchair waiting for lungs who spent Christmas at RMDH. Amazing people doing amazing things for their children. My friend Kelley said to me that I'm such a good mom. All I could think was how could I do anything else but get the best for my daughter, and wouldn't everyone do the same thing? I watched "My Sisters Keeper" this weekend. I highly recommend it. A story about a family living through luekemia. I cried and cried. So many parts I could relate to. So many I don't want to relate to. Yes, I've really been processing and internalizing so much of the emotional parts of cancer...it's been hard.
We did actually fly home with Wings of Hope in a small 4 passenger airplane. I was SO nervous. Megan was excited. We flew out of a small private airport Ellington Field where the Air Force Base is in Houston. The take offs and landings were rocky, but with wearing the prescription patch, it worked great. Once we got up around 8,000 ft, it was really smooth flying. The one time when we were staying low going out of Houston, a wind blew so hard it really put us going sideways and I was SO scared we were going to flip upside down. It was freaky! We stopped in Hot Springs, Arkansas, which is so beautiful. We had just been there over a year ago with our good friends, Rhonda, June, Kelton and Kaylor, who live in Arkansas so it was kind of fun to be there - so beautiful with the hills and forests. We filled up 30 gallons in each engine and headed back home. We got to fly over 6 Flags which was pretty neat. Megan layed down on the very comfy stretcher the whole time and rested fairly well. The people at Wings of Hope were awesome. The two pilots were volunteers - flying on their own time to help others. They were so nice to us. We got back and Aunt Marie and Kelsey were waiting in Chesterfield to take us home. Their coordinator and other staff showed them all around their hanger and let Kelsey get in a pilot's seat. I took their pictures with the plane and the girls both got Build-A-Bears and an art set. So very sweet. I of course was kind of ready to get home. :)
We came back home to the house having a first coat of paint and not really liking the color once it was on the house. So it was a whole process of new color, convincing painter to do more coats, test painting new colors, etc.
Then to get the new trampoline up for Kelsey's birthday party sleepover, two Girl Scout April Showers days, interviews with the Suburban Journal, trying to work, the floors a wreck from the dogs, muddy paws all over my carpets, dining room chairs falling apart, a third tree in the backyard dead, the deck falling apart, the flower beds need to be redone, the grass is nothing but weeds, Megan wants a desk for her room and new clothes and shoes and everything else she can find on Craig's list, doctor's visits, Megan feeling like crud, more barfing, vision coming and going between fuzzy and wavy, not wanting the tutors to come, afraid to go back to school, head pain, stomach pain, nausea, nose bleeds....ugh.
Yes, I'm tired and overwhelmed. But hopefully before too long we will have a period of somewhat normalcy. Do I know what that is?? :)
We did actually fly home with Wings of Hope in a small 4 passenger airplane. I was SO nervous. Megan was excited. We flew out of a small private airport Ellington Field where the Air Force Base is in Houston. The take offs and landings were rocky, but with wearing the prescription patch, it worked great. Once we got up around 8,000 ft, it was really smooth flying. The one time when we were staying low going out of Houston, a wind blew so hard it really put us going sideways and I was SO scared we were going to flip upside down. It was freaky! We stopped in Hot Springs, Arkansas, which is so beautiful. We had just been there over a year ago with our good friends, Rhonda, June, Kelton and Kaylor, who live in Arkansas so it was kind of fun to be there - so beautiful with the hills and forests. We filled up 30 gallons in each engine and headed back home. We got to fly over 6 Flags which was pretty neat. Megan layed down on the very comfy stretcher the whole time and rested fairly well. The people at Wings of Hope were awesome. The two pilots were volunteers - flying on their own time to help others. They were so nice to us. We got back and Aunt Marie and Kelsey were waiting in Chesterfield to take us home. Their coordinator and other staff showed them all around their hanger and let Kelsey get in a pilot's seat. I took their pictures with the plane and the girls both got Build-A-Bears and an art set. So very sweet. I of course was kind of ready to get home. :)
We came back home to the house having a first coat of paint and not really liking the color once it was on the house. So it was a whole process of new color, convincing painter to do more coats, test painting new colors, etc.
Then to get the new trampoline up for Kelsey's birthday party sleepover, two Girl Scout April Showers days, interviews with the Suburban Journal, trying to work, the floors a wreck from the dogs, muddy paws all over my carpets, dining room chairs falling apart, a third tree in the backyard dead, the deck falling apart, the flower beds need to be redone, the grass is nothing but weeds, Megan wants a desk for her room and new clothes and shoes and everything else she can find on Craig's list, doctor's visits, Megan feeling like crud, more barfing, vision coming and going between fuzzy and wavy, not wanting the tutors to come, afraid to go back to school, head pain, stomach pain, nausea, nose bleeds....ugh.
Yes, I'm tired and overwhelmed. But hopefully before too long we will have a period of somewhat normalcy. Do I know what that is?? :)
Sunday, April 17, 2011
What's Next
I haven't felt like updating the blog. It just felt hard to do. Everything has just been weighing on me and I've been trying to process it all. Plus, we've been trying to get back to a somewhat normal life again. That hasn't really happened all that much, but I've been trying. On Monday, April 5 Megan had another thyroid scan again, but this time they did four different kinds. Just the neck, full body, side views of the full body and then a short one I had to leave the room for. We then had a long break so we ate lunch and sat in chairs looking outside at the rain for awhile. Then we met with the endocrinologist again. He showed us the scans and explained what he saw. He said they looked good. We could see the tumors in her lungs, but they didn't light up orange as being thyroid material. He still doesn't know what they are. He says we will watch them, see if they grow and maybe next time we visit have them biopsied. The neck still showed plenty of leftover thyroid tissue from the surgery (you could really see it light up on the scan), some leftover at the very top of her neck probably from when she was forming in the uterus that got stuck as it was lowering into the neck, and some tumor on the left side of her neck that we'll have to watch. He said it was all ok for now because, in his words, no surgeon in there right mind would want to go back in there now. There is just too much risk of more damage. He thought the surgeon did a very nice job and really got everything he could possibly get without damaging more than he already had to damage to get the worst of it out. Unfortunately the thyroid tissue is what produces the cancer, and hers seems to grow fast, which is why they want it all gone. He said we should come back at the end of summer or in 6 months and again at a year and every 6 months for awhile after that too. He said she needs to go home and heal from all the surgery and get all the blood clots in her brain taken care of too. He likes to have ultrasounds done of the neck to watch her neck and the cancer. He finds that you can see more cancer and tumors with the ultrasounds than from the thyroid scans. They each have their purpose, but he likes the ultrasounds best because the scans can miss cancer while the other sees it. He said at the next visits we will look at having more scans, biopsies and possibly more surgery. He wants everything to be done at MD Anderson and I said that was fine, we'd be there whenever he said to be there. He was really very nice. He said we can communicate via email or phone and not to hesitate to contact him if we have any questions or concerns. I'd say we have a lot of the worst behind us for awhile, but still plenty more to deal with in the future as well.