I am happy to report that Megan is starting to feel much better. :0) She is eating and drinking normally, though she has lost a total of 40 pounds now. I'm wondering if I'm going to have to buy new pants for her again...She had gained 20 pounds this fall (and now we know why) - and I had to buy her all new pants -- but cancer is not a fun way to lose the weight! She is also watching tv now, playing on the internet and able to read small amounts at a time, so no books yet. Her vision still isn't the greatest, but a bit better. She has started to walk slowly with the walker around the second floor of the house. She took a visit to the first floor down the steps and she said it was too hard getting back up to do it often. At least she tried! She did take a fall in the shower too, but just some minor bumps to be had. She didn't want to have me come in to get her the face soap...silly girl. :) Her head pain is getting better, just tolerable pain right now, which is awesome. She's still taking the Dilaudid for pain during the day, but none at night now. If only the medicine's side effects would go away, she'd be very happy. :)
We had a set-back on Thursday, which made me pretty upset. The oncologist called to say that the pediatric endocrinologist at Cardinal Glennon decided she didn't want to take Megan's case because it's just too rare and complex. He tried the adult dr's, but they wouldn't take her either, so unfortunately she can't get her cancer care at St. John's. He said he'd try to find her someone in the Washington University system.
Friday morning I got a call from a nurse who works for the two doctors who see thyroid cancer patients in the radiation department at Siteman Cancer Center at Barnes. She was very helpful, providing plenty of useful information about their Radioactive Iodine (RAI) treatment program. They do see everyone, ages 5 - 97. They handle the entire care, no separate endocrinologist is usually required. Their program does seem to be less restrictive than St. John's program. They do the entire treatment on an out-patient basis as opposed to staying in the hopital 2 days like St. John's was going to require. They only do one thyroid scan 5 days after the treatment, as opposed to one 2 days before and 1 week after at St. John's. St. John's also wanted her to be completely off any thyroid medicine for 6 weeks and Barnes wants her on medicine to a thyroid level of 30 before she goes off the medicine for 2 weeks prior to treatment. Of course, she isn't on the medicine they want her on. So, we go to see the new doctor on Tuesday morning. More info to follow...
So Friday afternoon I spent calling different departments getting medical records and scans on CD and took them to Siteman. The only part I'm sort of upset about, is that Siteman isn't in a "kid-friendly" area - it was kind of depressing when I was there. Nothing compared to going into the Cardinals Care Kids Cancer Center at St. John's. I'm sure Children's Cancer Center (an extention of Siteman) is awesome too, but they don't treat her cancer there. So boring adult cancer center it is. But, the only thing that matters is that they have incredible cancer care. Period.
Of course the bills have started coming in and they are fun to go through and see how much they bill for a service and how much insurance allows for each of them. And someone with out insurance would pay the whole amount?? unimaginable. The bad news on Wednesday night was that I realized they were denying the claims starting with the second surgery because of "pre-existing condition". Didn't seem right to me since we've been with United HealthCare for 3 years. I called and they said it did look wrong but I'd have to call back on Thursday. So I called and talked to the review department. Turns out our policies group number changed on Jan. 1 so it flagged us all for pre-existing conditions. They unflagged us and she started to put through the denied claims. Whew! I had huge anxiety knots in my stomach from that one...that's all I would need on top of deductibles and copays...sheesh.
Saturday, February 26, 2011
Tuesday, February 22, 2011
Feb. 22
Today begins a halfway normal life again.
Kelsey came home on Sunday night after spending Thursday and Friday at Tricia and Shannon's house and then the weekend with dad and spending the previous two weeks at Aunt Marie's house - she's able to be back home with us and sleeping in her own bed again. I think she's had fun hanging with Aunt Marie, cousin Beth, Miss Deanna, Carol, Grandma, Dad and the Conrads, but it was good to be home again. :) Thanks to everyone who has helped...been a crazy month for sure!
Megan layed in bed all morning but really felt pretty good. No major issues. She watched 30 minutes of TV while I went to get Kelsey's medicine. She actually wanted 2 small quesadillas for breakfast...hey as long as it's food, it works for me! Yesterday all she ate was 2 of those frozen qusadillas and a cookie.
We went to the cancer center today to get a check-up and get blood taken for tests. Megan is still taking these darn steroids to lower the swelling in her brain, which ultimately makes so many things feel better, but it also has a lot of side affects. We had a list of questions for the doctor. Of course he added 2 more medications to the 13 she already has... She has a rash on her neck and behind her ear into her head - from steroids he says. Her legs and hips and butt hurt - he says steroids can cause muscle and bone pain. Her stomach hurts terribly - still from the acid build up from the steroids. She's also having a hard time sleeping from them too. I gave her sleeping pills and benedryl before bed the last 2 nights and she still only slept 3 hours last night and the night before. No fun. She just lays there in the dark. I asked her what she thinks about all the time as she's been laying in bed in the dark and quiet for the last 3 weeks and she said mostly camp. Thinking about all the cool things she's done over the years, what units she's been in, and what she'll do this year. She's signed up for one week at Camp Rainbow, a free camp for kids with Cancer, 2 weeks at Girl Scout horsback riding camp at Cedarledge with Shelby and then 1 week at Girl Scout Let's Get Cooking camp at Tuckaho with Shelby. She wants to do a Wolf camp with Shelby too. Not able to camp with Katie again this year. :(
She's had tingling in her feet for most of her hospital stay. Now it's tingly in her left leg, hands and face. Oncologist isn't sure why...he wanted us to see the neurologist next week but now he wants us to call on Thursday and if it's not better wants us to get in to see him this week. Another wait and see....
We did get an appointment to see the endocrinologist on Friday. There really isn't any other pediatric dr. who deals with kids with thyroid cancer in St. Louis. She will do all the follow-up on tracking her thyroid levels, medications and such in the future. I guess I'm going to schedule the radioactive iodine treatment tomorrow. The oncologist doesn't want to wait - she needs to have it done on the 6-week post-surgery schedule, but we had to get in to see this new dr. That means she starts the low-iodine diet within the next week. I've been reading online about it - not much fun. All foods need to be 5 g of iodine or less per serving. (Salt is 400 g for 1 tsp). No dairy, eggs, commercial bread, anything from the sea, only 5 oz of fresh meat (no turkey) a day, 4 servings of very few carbohydrates, no iodized salt...so many weird restrictions. All pure and plain, nothing from restaurants. They do have a cookbook online so I guess I'll be baking bread, making homemade waffles and such. I think I'll be making a trip down to Valenti's meat market. :)
After the dr's visit she felt pretty decent. She watched a couple hours of tv tonight, looked on the computer and Keri brought her 3 new teen magazines (along with a fabulous dinner) and she was super excited. She actually ate the dinner that was brought to us tonight and wanted more mashed potatoes at 10 pm and then a cookie from last nights dinner and the pie from tonight too! I guess since she's lost 35 pounds I won't mind the little extra dessert intake! :0)
Kelsey came home on Sunday night after spending Thursday and Friday at Tricia and Shannon's house and then the weekend with dad and spending the previous two weeks at Aunt Marie's house - she's able to be back home with us and sleeping in her own bed again. I think she's had fun hanging with Aunt Marie, cousin Beth, Miss Deanna, Carol, Grandma, Dad and the Conrads, but it was good to be home again. :) Thanks to everyone who has helped...been a crazy month for sure!
Megan layed in bed all morning but really felt pretty good. No major issues. She watched 30 minutes of TV while I went to get Kelsey's medicine. She actually wanted 2 small quesadillas for breakfast...hey as long as it's food, it works for me! Yesterday all she ate was 2 of those frozen qusadillas and a cookie.
We went to the cancer center today to get a check-up and get blood taken for tests. Megan is still taking these darn steroids to lower the swelling in her brain, which ultimately makes so many things feel better, but it also has a lot of side affects. We had a list of questions for the doctor. Of course he added 2 more medications to the 13 she already has... She has a rash on her neck and behind her ear into her head - from steroids he says. Her legs and hips and butt hurt - he says steroids can cause muscle and bone pain. Her stomach hurts terribly - still from the acid build up from the steroids. She's also having a hard time sleeping from them too. I gave her sleeping pills and benedryl before bed the last 2 nights and she still only slept 3 hours last night and the night before. No fun. She just lays there in the dark. I asked her what she thinks about all the time as she's been laying in bed in the dark and quiet for the last 3 weeks and she said mostly camp. Thinking about all the cool things she's done over the years, what units she's been in, and what she'll do this year. She's signed up for one week at Camp Rainbow, a free camp for kids with Cancer, 2 weeks at Girl Scout horsback riding camp at Cedarledge with Shelby and then 1 week at Girl Scout Let's Get Cooking camp at Tuckaho with Shelby. She wants to do a Wolf camp with Shelby too. Not able to camp with Katie again this year. :(
She's had tingling in her feet for most of her hospital stay. Now it's tingly in her left leg, hands and face. Oncologist isn't sure why...he wanted us to see the neurologist next week but now he wants us to call on Thursday and if it's not better wants us to get in to see him this week. Another wait and see....
We did get an appointment to see the endocrinologist on Friday. There really isn't any other pediatric dr. who deals with kids with thyroid cancer in St. Louis. She will do all the follow-up on tracking her thyroid levels, medications and such in the future. I guess I'm going to schedule the radioactive iodine treatment tomorrow. The oncologist doesn't want to wait - she needs to have it done on the 6-week post-surgery schedule, but we had to get in to see this new dr. That means she starts the low-iodine diet within the next week. I've been reading online about it - not much fun. All foods need to be 5 g of iodine or less per serving. (Salt is 400 g for 1 tsp). No dairy, eggs, commercial bread, anything from the sea, only 5 oz of fresh meat (no turkey) a day, 4 servings of very few carbohydrates, no iodized salt...so many weird restrictions. All pure and plain, nothing from restaurants. They do have a cookbook online so I guess I'll be baking bread, making homemade waffles and such. I think I'll be making a trip down to Valenti's meat market. :)
After the dr's visit she felt pretty decent. She watched a couple hours of tv tonight, looked on the computer and Keri brought her 3 new teen magazines (along with a fabulous dinner) and she was super excited. She actually ate the dinner that was brought to us tonight and wanted more mashed potatoes at 10 pm and then a cookie from last nights dinner and the pie from tonight too! I guess since she's lost 35 pounds I won't mind the little extra dessert intake! :0)
Monday, February 21, 2011
Feb. 21
Saturday morning Megan woke up and felt like she was ready to head home and see her doggies, so we finally made it home on Saturday evening around 5:30. She did pretty good on the car ride home. She wore sunglasses and luckily it was a cloudy day and getting dark by the time we got home. She was so excited to see the dogs. Of course I wasn't, because they were a muddy mess from all the melting snow so I had to give them both a bath before I would let them loose in the house. And after 2 weeks of sleeping on that couch, my back wasn't much in the mood for leaning over the tub to give 2 dogs a bath, not to mention cleaning the kitchen floor that was a muddy mess. :)
Megan is starting to feel a bit better for parts of each day more and more. She can have a light on for part of the day and watch maybe 30 minutes of TV once or twice a day. She's enjoyed looking at her magazines getting caught up on all the teen stars gossip and looking at the prom dresses. :0)
So I've started our own pharmacy out of my bedroom. There are seriously tooo many drugs in one hosehold. She has 13 medications equaling taking 24 pills, 2 shots, 2 liquids, 2 puffs and 2 sprays each day. We got a fancy pill holder for 4 times a day and a dry erase board we hung on the bathroom door with a medicine schedule written on it. I freaked when I saw the bill for the shots - the insurance would only pay for 15 days at a time, so 2 copays of $35 each, but each presciption cost $1,630. Good golly!
A big thanks to our Girl Scout leader friends who have begun bringing us dinners. Plus lots of paper plates and cups are a huge help to cut down on dishes. Not very earth wise, but probably just easier for now. :)
We head to the oncologist tomorrow. She has a rash on her neck - and her face, hands and left leg are tingly - so we need to ask about those and the pharmacy never got her prevacid prescription right and her stomach is hurting very often, they say from lots of extra acid from meds. Tums are kind of working right now but need to get the prevacid I guess.
My room is all set up with all her gifts, flowers, stuffed animals and lots of cards. It's definitely kid friendly - and close to the bathroom. :) Pepper is happy to be sleeping with Megan again and I do believe it's very good therapy for Megan too. :0)-
Megan is starting to feel a bit better for parts of each day more and more. She can have a light on for part of the day and watch maybe 30 minutes of TV once or twice a day. She's enjoyed looking at her magazines getting caught up on all the teen stars gossip and looking at the prom dresses. :0)
So I've started our own pharmacy out of my bedroom. There are seriously tooo many drugs in one hosehold. She has 13 medications equaling taking 24 pills, 2 shots, 2 liquids, 2 puffs and 2 sprays each day. We got a fancy pill holder for 4 times a day and a dry erase board we hung on the bathroom door with a medicine schedule written on it. I freaked when I saw the bill for the shots - the insurance would only pay for 15 days at a time, so 2 copays of $35 each, but each presciption cost $1,630. Good golly!
A big thanks to our Girl Scout leader friends who have begun bringing us dinners. Plus lots of paper plates and cups are a huge help to cut down on dishes. Not very earth wise, but probably just easier for now. :)
We head to the oncologist tomorrow. She has a rash on her neck - and her face, hands and left leg are tingly - so we need to ask about those and the pharmacy never got her prevacid prescription right and her stomach is hurting very often, they say from lots of extra acid from meds. Tums are kind of working right now but need to get the prevacid I guess.
My room is all set up with all her gifts, flowers, stuffed animals and lots of cards. It's definitely kid friendly - and close to the bathroom. :) Pepper is happy to be sleeping with Megan again and I do believe it's very good therapy for Megan too. :0)-
Friday, February 18, 2011
Feb. 18
We slept in again this morning till 11 am. This dark and cold room does make it nice for sleeping. The physical therapist came in and tried to take her for a walk but she was in too much pain and nauscious so she waited until she got all of her medicines and came back after lunch. She helped her get up with a walker and took a short walk to some stairs. She showed her the best way to go up the stairs and down - and also told me what to do once we're home. By the time she got back to bed she was crying in pain again and very nauscious so the nurse gave her a second nausia medicine. She then slept the rest of the afternoon until 6:30. She even slept through the oncologists visit.
We decided to let Megan stay another night in the hospital, no reason to rush her out and she really didn't want to go home today while feeling so poorly. Her ears have really hurt her today too and says it's harder to hear. So the dr. said to have her get up and take a shower as soon as she is feeling better. She needs to be up as much as possible to get her body a little more back to normal. I have to make sure she has a good pair of sunglasses for the ride home because of the light. Keeping things dark really does help her.
Megan chatted with Kelsey, Dad and aunt Marie this evening for a bit and then took another small nap. She seemed to be feeling better so she asked to take a shower. The nurse offered her to go to the tub room and take a nice bath. She was super excited! There's even a TV in there and she thought she might turn it on. That would make the first time she turned on the TV in these 12 days in the hospital. :0) She says when she's done she's ready to take all of her medicines and give her some Benedryl to knock her out.
I guess we'll see what tomorrow brings...
We decided to let Megan stay another night in the hospital, no reason to rush her out and she really didn't want to go home today while feeling so poorly. Her ears have really hurt her today too and says it's harder to hear. So the dr. said to have her get up and take a shower as soon as she is feeling better. She needs to be up as much as possible to get her body a little more back to normal. I have to make sure she has a good pair of sunglasses for the ride home because of the light. Keeping things dark really does help her.
Megan chatted with Kelsey, Dad and aunt Marie this evening for a bit and then took another small nap. She seemed to be feeling better so she asked to take a shower. The nurse offered her to go to the tub room and take a nice bath. She was super excited! There's even a TV in there and she thought she might turn it on. That would make the first time she turned on the TV in these 12 days in the hospital. :0) She says when she's done she's ready to take all of her medicines and give her some Benedryl to knock her out.
I guess we'll see what tomorrow brings...
Thursday, February 17, 2011
Feb. 16-17
Wednesday morning we were up and a'tem to get to the nuclear medicine dr. We had to go by wheelchair for this trip and Megan wasn't very excited. By the end of it she was crying in pain to get back to her bed. :( We chatted with the dr. about the radioactive iodine treatment that he will give her for the thyroid cancer. In a week she will stop taking her thyroid medine and start eating a low-iodine diet for the two weeks prior to getting the treatment. So, she is barely eating as it is, and now she will have to have a very restricted diet and manage to get 70 grams of protein each day...should be an interesting 2 weeks. No dairy, fish, pasta, breads, potatoes, beef, salt, etc...ugh. Luckily the dietician came in today and gave us examples of good sources of protein and the right amounts. If only half of them weren't dairy and meat. :( Looks like these Resource drinks by Boost might work but need to check with the dr. to make sure.
Today Megan is wondering if there can be anything else rare about her - she even has the rare O+ blood type. She's just amazed by it all.
The speech pathologist came by and taught Megan to chew her food while having her head turned to the left. This will help keep the food away from the right side of the neck where the trauma from the surgery happened. It actually helped. The dietician said to start slow and work up to more foods, but to try to get as much protein as possible. So she has to give up the gatorade and go for the chocolate milk. I said there are worse things than that... :)
This afternoon Carol went with Ms. Megan over to the eye dr. so he could test her for all kinds of things. It was not a fun appointment. Lots of light. No laying. Delays getting her in the office. Delays with transportation getting her back to her room. By the time she got back she was just crying in pain and needed to laying silent in darkness. Poor baby... Not sure of the results yet...
The oncologist came by and said we should start thinking about getting home. I have to learn how to give Megan her shots in the stomach twice a day, so I'm going to attempt that tonight...and she isn't excited about having me do it...silly girl doesn't trust her mom with a needle. :0)
Physical therapy is going to come tomorrow to help her get up and be more steady on her feet. She's been laying in a bed for so many weeks that she has a hard time walking - afraid her legs are going to buckle under her. Dr. is thinking maybe a walker might help.
Dr. said he can get a nurse to come to the house to take her blood for the labs they still need run very regularly. They have to measure the levels of the blood thinner shots to make sure it's ok. He is going to get all her medicines ready here at the hospital so we don't have to run and get them once we're home. That's a help.
Taking her off the TPN/feeding tube made her blood sugars go back down to normal today. It combined with the steroids were causing her to have 300 sugar levels.
Oncologist gave her the green light to go to Girl Scout camp this summer. He said she'll still be on the blood thinners in June, so she has to be careful, be he thinks she should be able to go. She is sooo excited!
Today Megan is wondering if there can be anything else rare about her - she even has the rare O+ blood type. She's just amazed by it all.
The speech pathologist came by and taught Megan to chew her food while having her head turned to the left. This will help keep the food away from the right side of the neck where the trauma from the surgery happened. It actually helped. The dietician said to start slow and work up to more foods, but to try to get as much protein as possible. So she has to give up the gatorade and go for the chocolate milk. I said there are worse things than that... :)
This afternoon Carol went with Ms. Megan over to the eye dr. so he could test her for all kinds of things. It was not a fun appointment. Lots of light. No laying. Delays getting her in the office. Delays with transportation getting her back to her room. By the time she got back she was just crying in pain and needed to laying silent in darkness. Poor baby... Not sure of the results yet...
The oncologist came by and said we should start thinking about getting home. I have to learn how to give Megan her shots in the stomach twice a day, so I'm going to attempt that tonight...and she isn't excited about having me do it...silly girl doesn't trust her mom with a needle. :0)
Physical therapy is going to come tomorrow to help her get up and be more steady on her feet. She's been laying in a bed for so many weeks that she has a hard time walking - afraid her legs are going to buckle under her. Dr. is thinking maybe a walker might help.
Dr. said he can get a nurse to come to the house to take her blood for the labs they still need run very regularly. They have to measure the levels of the blood thinner shots to make sure it's ok. He is going to get all her medicines ready here at the hospital so we don't have to run and get them once we're home. That's a help.
Taking her off the TPN/feeding tube made her blood sugars go back down to normal today. It combined with the steroids were causing her to have 300 sugar levels.
Oncologist gave her the green light to go to Girl Scout camp this summer. He said she'll still be on the blood thinners in June, so she has to be careful, be he thinks she should be able to go. She is sooo excited!
Tuesday, February 15, 2011
Feb. 15
Megan was feeling much better this morning than yesterday. Yesterday she slept the entire day until about 8 pm and then went back to bed at 10:30 and slept through the night. I think maybe the weekend of visitors and playing on the laptop wore her out. So this morning was a much better day to have to get on a weird chair to be taken for the swallow test. All of her other tests she's had to be taken in her bed. So they had her drink and eat Sprite, pudding, teddy graham, and frito with barium in them. It all said her swallow is weak, but working fine. So starting tonight she should start eating three bites of a soft food and gradually eat a bit more at each meal. So she just finished three bites of mashed potatoes and gravy. And that was all she wanted anyway so it worked perfectly.
After the test we came back to the room and rested for awhile until the oncologist came. He said all of her ultrsound scans from yesterday came back negative - yea! Then he told us about the lumbar puncture he was about to do. The nurses got her ready and she rode down to the PICU in her bed. The procedure went well. Her level of fluid was 24 cc's, and normal is 10 or less, but the normal psuedo tumor level is 30, so it wasn't horrible. He took off 9 so she is down to 15. We're hopeful it will help the pain in her head, eyes and ears.
While they had her sedated, the nurses, and then the oncologist, took out the one needle from her port. Then they put in a new needle in her right port and then had trouble accessing the difficult one, so the oncologist stepped in and accessed her left side port. Both went in and they hooked her back up to her feeding tubes and saline bag. Sooo excited! She still has her IV in her arm just in case, but hopefully they will be able to take it out.
So we came back and took a nappy until Megan actually woke me up asking if I was going to order dinner. She kept chatting away and I wanted to sleep some more...but up I got. :0)
Then the opthomologist came by and looked at her eyes again. He said they look the same. She still has pressure on the eyes causing her blurred and double vision. It gets better and worse off and on...kinda weird. He said the Horner's syndrom might not get better. He said to wait awhile and if it doesn't get better, she can have another surgery to repair the muscle and make her eyelid work better again. Great, another surgery needed. One for voice, now one for her eye. Going to be a busy summer between camps and surgeries!
Aunt Ann came by at lunch for a visit and Mr. Hale, the 7th grade principal at DuBray, came by tonight. He brought a banner that the 7th grade gold team made, all kinds of cards from her friends and teachers, plus flowers and candy. Carol dropped off a squishy peace sign pillow and the coolest sheets that fit an extra long twin bed. The hospital sheets were making her really itchy and the regular twin sheets we had from home didn't really fit. Everyone all day has commented how cool her sheets are. We made the oncologist promise not to get any blood on them during the spinal tap. :) Megan's one girl scout troop made her cards and a poster board and gave her an adorable blue dog that is wearing their troop shirt. So cute! My work sent a banner with lots of get well wishes and Mrs. Latore's 4th grade class from Mid Rivers Elementary made a big yellow banner "sending her sunshine and rainbows". Her 7th grade teachers sent her flowers and a very cute teddy bear that is hugging the vase. Her whole room is decorated with all the cards she has gotten from this hospital visit, plus the banners, flowers, gifts and balloons. The oncologist said it's the most colorful room in the whole hospital. :0) Thank you's to everyone!!
After the test we came back to the room and rested for awhile until the oncologist came. He said all of her ultrsound scans from yesterday came back negative - yea! Then he told us about the lumbar puncture he was about to do. The nurses got her ready and she rode down to the PICU in her bed. The procedure went well. Her level of fluid was 24 cc's, and normal is 10 or less, but the normal psuedo tumor level is 30, so it wasn't horrible. He took off 9 so she is down to 15. We're hopeful it will help the pain in her head, eyes and ears.
While they had her sedated, the nurses, and then the oncologist, took out the one needle from her port. Then they put in a new needle in her right port and then had trouble accessing the difficult one, so the oncologist stepped in and accessed her left side port. Both went in and they hooked her back up to her feeding tubes and saline bag. Sooo excited! She still has her IV in her arm just in case, but hopefully they will be able to take it out.
So we came back and took a nappy until Megan actually woke me up asking if I was going to order dinner. She kept chatting away and I wanted to sleep some more...but up I got. :0)
Then the opthomologist came by and looked at her eyes again. He said they look the same. She still has pressure on the eyes causing her blurred and double vision. It gets better and worse off and on...kinda weird. He said the Horner's syndrom might not get better. He said to wait awhile and if it doesn't get better, she can have another surgery to repair the muscle and make her eyelid work better again. Great, another surgery needed. One for voice, now one for her eye. Going to be a busy summer between camps and surgeries!
Aunt Ann came by at lunch for a visit and Mr. Hale, the 7th grade principal at DuBray, came by tonight. He brought a banner that the 7th grade gold team made, all kinds of cards from her friends and teachers, plus flowers and candy. Carol dropped off a squishy peace sign pillow and the coolest sheets that fit an extra long twin bed. The hospital sheets were making her really itchy and the regular twin sheets we had from home didn't really fit. Everyone all day has commented how cool her sheets are. We made the oncologist promise not to get any blood on them during the spinal tap. :) Megan's one girl scout troop made her cards and a poster board and gave her an adorable blue dog that is wearing their troop shirt. So cute! My work sent a banner with lots of get well wishes and Mrs. Latore's 4th grade class from Mid Rivers Elementary made a big yellow banner "sending her sunshine and rainbows". Her 7th grade teachers sent her flowers and a very cute teddy bear that is hugging the vase. Her whole room is decorated with all the cards she has gotten from this hospital visit, plus the banners, flowers, gifts and balloons. The oncologist said it's the most colorful room in the whole hospital. :0) Thank you's to everyone!!
Monday, February 14, 2011
Feb. 14
Happy Valentine's Day to everyone!
Megan woke up today not feeling well and hasn't gotten any better so far. She's had some bad stomach pain, dizziness, nausia and just a small amount of head pain. The decreased head pain is good! Her vision seems to be worse though, she can't really read at all right now.
Today she had ultrasounds of her liver, kidneys, pancreas, bladder, gall bladder and heart. They are checking to see if she has other symptoms of tuberous sclerosis in her other organs. If not, she might not have TSC. If she does, then we have a probable diagnosis. This neurologist isn't all the way convinced, but he's suspicious.
Unfortunately, he did order for her to have a spinal tap tomorrow, so they have to lower the amount of blood thinners they are giving her, in case they nick something during the procedure, they don't want her to bleed too much. He says if indeed her brain swelling is all from the vein thrombosis, it might really help relieve the pressure that has been giving her so much pain in her head, ears and the blurry and double vision. She's going to be happy to know she is going to be put to sleep for the test so show won't know a thing. So while she's asleep, they are going to try to fix her port and get the second side re-accessed and working, and re-access the first port that is working (has to be done once a week, if accessed) - and she won't feel a thing! Oh, thank the Lord almighty for that one. I don't think we can go through that pain and suffering again while awake.
The oncologist ordered a speech evaluation followed by a barium swallow test and that will be tomorrow also. She still can't swallow anything more than a shake. She hasn't eaten real food in like 18 days I think. But, she has the TPN and Lipids they're giving her for nutrition, which helps. But, they are giving her very high blood sugar readings, making her almost diabetic at the moment, so he is working on adjusting her sugars to get them back down to normal. He says it's from the steroids she's getting.
So, it's 6 pm and we're sitting in the quiet and dark...and she just kinda yelled out at Kelsey in her sleep...kinda funny. Oh ya, yesterday early morning, she woke up seeing an old lady in a pink pajama gown floating up to the left of her...I said maybe we need to get a shrink next...the oncologist laughed. He said sometimes the steroids can make you have episodes like that...I think he was just being nice... :)
Megan woke up today not feeling well and hasn't gotten any better so far. She's had some bad stomach pain, dizziness, nausia and just a small amount of head pain. The decreased head pain is good! Her vision seems to be worse though, she can't really read at all right now.
Today she had ultrasounds of her liver, kidneys, pancreas, bladder, gall bladder and heart. They are checking to see if she has other symptoms of tuberous sclerosis in her other organs. If not, she might not have TSC. If she does, then we have a probable diagnosis. This neurologist isn't all the way convinced, but he's suspicious.
Unfortunately, he did order for her to have a spinal tap tomorrow, so they have to lower the amount of blood thinners they are giving her, in case they nick something during the procedure, they don't want her to bleed too much. He says if indeed her brain swelling is all from the vein thrombosis, it might really help relieve the pressure that has been giving her so much pain in her head, ears and the blurry and double vision. She's going to be happy to know she is going to be put to sleep for the test so show won't know a thing. So while she's asleep, they are going to try to fix her port and get the second side re-accessed and working, and re-access the first port that is working (has to be done once a week, if accessed) - and she won't feel a thing! Oh, thank the Lord almighty for that one. I don't think we can go through that pain and suffering again while awake.
The oncologist ordered a speech evaluation followed by a barium swallow test and that will be tomorrow also. She still can't swallow anything more than a shake. She hasn't eaten real food in like 18 days I think. But, she has the TPN and Lipids they're giving her for nutrition, which helps. But, they are giving her very high blood sugar readings, making her almost diabetic at the moment, so he is working on adjusting her sugars to get them back down to normal. He says it's from the steroids she's getting.
So, it's 6 pm and we're sitting in the quiet and dark...and she just kinda yelled out at Kelsey in her sleep...kinda funny. Oh ya, yesterday early morning, she woke up seeing an old lady in a pink pajama gown floating up to the left of her...I said maybe we need to get a shrink next...the oncologist laughed. He said sometimes the steroids can make you have episodes like that...I think he was just being nice... :)
Sunday, February 13, 2011
Feb. 13
Sunday started off slowly for us. We were up for her to take her medicines around 9:30 and back to bed we went until around 1 pm when a darn IV buzzer woke us up.
But, the oncologist came in around 1:30 to give us and update and see how she was. He started another medicine to lower the PH in her kidneys which will then slow the formation of blood in her brain. He's hoping it might help lower the swelling in her brain a bit and prevent the neurologist from doing a spinal tap tomorrow. Megan sure doesn't want that!! So, we'll see how it goes... We asked about the problem with her right eye and he said that a nerve was injured during the surgery and so now she has Horner's Syndrome. They are hopefull that it will go away after some time, but for now her right eye is droopy, watery and the pupil is smaller. Her vision is still blurry and double a lot of the time, but closing the right eye does seem to help some.
This afternoon we had Grandpa and Vera and Grandma and Kelsey come. We also had a visitor from a little therapy dog named Sunshine. Megan was so excited to see her. She was the cutest little dog that kinda looked like a black poodle, but it was something rare and we can't remember the name. She did some tricks and Megan got to pet her for awhile. Hopefully another dog will be by tomorrow to say hi. :)
Kelsey stayed and hung out with us this afternoon and evening. And boy were they back to normal -- bickering and complaining back and forth. UGH! Kelsey and I are going home for the night and I will be back up at 8 am. I need to get some things from home, and hang with Kelsey and the dogs, so Dad is staying tonight since he is off work tonight. His turn for the fun filled couch to sleep on! lol
But, the oncologist came in around 1:30 to give us and update and see how she was. He started another medicine to lower the PH in her kidneys which will then slow the formation of blood in her brain. He's hoping it might help lower the swelling in her brain a bit and prevent the neurologist from doing a spinal tap tomorrow. Megan sure doesn't want that!! So, we'll see how it goes... We asked about the problem with her right eye and he said that a nerve was injured during the surgery and so now she has Horner's Syndrome. They are hopefull that it will go away after some time, but for now her right eye is droopy, watery and the pupil is smaller. Her vision is still blurry and double a lot of the time, but closing the right eye does seem to help some.
This afternoon we had Grandpa and Vera and Grandma and Kelsey come. We also had a visitor from a little therapy dog named Sunshine. Megan was so excited to see her. She was the cutest little dog that kinda looked like a black poodle, but it was something rare and we can't remember the name. She did some tricks and Megan got to pet her for awhile. Hopefully another dog will be by tomorrow to say hi. :)
Kelsey stayed and hung out with us this afternoon and evening. And boy were they back to normal -- bickering and complaining back and forth. UGH! Kelsey and I are going home for the night and I will be back up at 8 am. I need to get some things from home, and hang with Kelsey and the dogs, so Dad is staying tonight since he is off work tonight. His turn for the fun filled couch to sleep on! lol
Feb. 12
Saturday we woke up fairly early, for us anyway, and both of us took showers and got up for the day. Megan was feeling much better and wanted to look at the computer again this morning. She's very excited to decorate the new bathroom. She's picked out a "PEACE" pattern from online at Target she loves. Very teenagerish. :)
In case you didn't know, around Labor Day, I started what I thought was a small project to remove some mold in the kids bathroom. When I got into it, it ended up being a huge project from the plumbing leaking behind the walls. So when Megan was diagnosed with Thyroid cancer, we found out that she had to have Radioactive Iodine treatments. They require that she be sequestered for a week and have her own bathroom because she will literally be radioactive. Sooo, here we are in the middle of being diagnosed with cancer and having major surgery, and we have to pick out all kind of things for a new bathroom. Luckily family and friends and pitched in to help get it all together. A huge thanks to Gary, Kate, Dan, Beth and Garth for all the help!!! So far it was completely gutted to studs, the copper all changed and fixed, put in a new subfloor, floor tile, drywall, the shower and tub. Megan helped pick out a lot of it and she's so excited to have a new bathroom all to herself. :0)
We had visits today from Carol and Brian, Deanna, Uncle Chris, Aunt Elizabeth, Dominic, Shiela and Shelby and the pediatrician. She really enjoyed being up more, having a light on part of the day and talking to people. The steroids are definitely making her a chatty Kathy! Towards the end of the day her headache started coming back a lot more and we had to go back to darkness.
The pediatrician was here for quite awhile and was so nice to bring us fruit smoothies from McDonalds and Pasta House salad and pasta for mom. YUM! Their was bad news though. Her husband is Kelsey's neurologist and the two doctors looked at their MRI's and agreed that they both looked very similiar. The neurologist thinks Megan has Tuberous Sclerosis Complex, just like Kelsey. The pediatrician called the neuro-Radiologist and talked with him about Megan's results and they both agreed - she has "tubers" or "white matter" on her brain, indicating probable TSC. The good news is that it explains all the white spots on her brain and makes the doctors feel better that she won't have a stroke. Later this week she will get kidney and heart ultrasounds to look for more tubers.
In case you didn't know, around Labor Day, I started what I thought was a small project to remove some mold in the kids bathroom. When I got into it, it ended up being a huge project from the plumbing leaking behind the walls. So when Megan was diagnosed with Thyroid cancer, we found out that she had to have Radioactive Iodine treatments. They require that she be sequestered for a week and have her own bathroom because she will literally be radioactive. Sooo, here we are in the middle of being diagnosed with cancer and having major surgery, and we have to pick out all kind of things for a new bathroom. Luckily family and friends and pitched in to help get it all together. A huge thanks to Gary, Kate, Dan, Beth and Garth for all the help!!! So far it was completely gutted to studs, the copper all changed and fixed, put in a new subfloor, floor tile, drywall, the shower and tub. Megan helped pick out a lot of it and she's so excited to have a new bathroom all to herself. :0)
We had visits today from Carol and Brian, Deanna, Uncle Chris, Aunt Elizabeth, Dominic, Shiela and Shelby and the pediatrician. She really enjoyed being up more, having a light on part of the day and talking to people. The steroids are definitely making her a chatty Kathy! Towards the end of the day her headache started coming back a lot more and we had to go back to darkness.
The pediatrician was here for quite awhile and was so nice to bring us fruit smoothies from McDonalds and Pasta House salad and pasta for mom. YUM! Their was bad news though. Her husband is Kelsey's neurologist and the two doctors looked at their MRI's and agreed that they both looked very similiar. The neurologist thinks Megan has Tuberous Sclerosis Complex, just like Kelsey. The pediatrician called the neuro-Radiologist and talked with him about Megan's results and they both agreed - she has "tubers" or "white matter" on her brain, indicating probable TSC. The good news is that it explains all the white spots on her brain and makes the doctors feel better that she won't have a stroke. Later this week she will get kidney and heart ultrasounds to look for more tubers.
Friday, February 11, 2011
Feb. 11
We began our day at 8 am getting ready for the second half of the MRI she couldn't finish last night. She was in better spirits and was able to listen to music during the test...Z107 of course, inlcuding a Lady Gaga song. :)
She didn't sleep well last night - so many nurses visits. So we slept the rest of the morning until the oncologist came in at 12:30 and woke us up. Megan said she was feeling the same. He told us the MRI was basically the same, thought there was a little clearing in the veins. At least it's starting to work somewhat. Waiting on the neuro to give us a treatment plan. Her head pain was worse today and the doctor let her get some extra doses of pain medicine and upped the dosage too. No puking today! But only peed twice in 24 hours...so now they have the "hat" in the potty again so they can measure the pee...yuck!
The afternoon we had Carol come visit and bring her some cards that some Girl Scouts in our area made for her. This evening she went through each of them and made comments. She loved the ones from the little daisy's that said "Get well sone" and their little poems that were cute. The big one from an older troop was very cool. They all made her smile a lot. I decorated the message board with all the cards for her to see.
The neuro finally ordered her to have some steroids to begin at 6 pm and every 6 hours. They are hoping for some improvements within 1 to 2 days...time will tell.
Tonight her dad was here too and we had some nice time together. She was able to look at the computer for awhile before her eyes went completely blurry. She was so happy to "chat" with 5 friends on Facebook. Then I read her some of the Girl Scout camp info because she wants to be able to do the "Saddle Sence" camp this summer so she can be a WIT next summer. She's so worried about getting up the big hill to the barn to the horses (she has tumors in her lung also). I promised her that I would make sure that they drive her to the barn and back each time...she's so afraid she won't be able to go. She's also worried because she can't yell or sing anymore and you have to do those at camp -- it's a requirement. I said to fake it, heck no one would know anyway. :)
She didn't sleep well last night - so many nurses visits. So we slept the rest of the morning until the oncologist came in at 12:30 and woke us up. Megan said she was feeling the same. He told us the MRI was basically the same, thought there was a little clearing in the veins. At least it's starting to work somewhat. Waiting on the neuro to give us a treatment plan. Her head pain was worse today and the doctor let her get some extra doses of pain medicine and upped the dosage too. No puking today! But only peed twice in 24 hours...so now they have the "hat" in the potty again so they can measure the pee...yuck!
The afternoon we had Carol come visit and bring her some cards that some Girl Scouts in our area made for her. This evening she went through each of them and made comments. She loved the ones from the little daisy's that said "Get well sone" and their little poems that were cute. The big one from an older troop was very cool. They all made her smile a lot. I decorated the message board with all the cards for her to see.
The neuro finally ordered her to have some steroids to begin at 6 pm and every 6 hours. They are hoping for some improvements within 1 to 2 days...time will tell.
Tonight her dad was here too and we had some nice time together. She was able to look at the computer for awhile before her eyes went completely blurry. She was so happy to "chat" with 5 friends on Facebook. Then I read her some of the Girl Scout camp info because she wants to be able to do the "Saddle Sence" camp this summer so she can be a WIT next summer. She's so worried about getting up the big hill to the barn to the horses (she has tumors in her lung also). I promised her that I would make sure that they drive her to the barn and back each time...she's so afraid she won't be able to go. She's also worried because she can't yell or sing anymore and you have to do those at camp -- it's a requirement. I said to fake it, heck no one would know anyway. :)
Thursday, February 10, 2011
Feb. 10
Megan didn't think it was really fun to wake up to take her morning medicines, only to puke them up, and then have to take them again. Good news was that she only had her port poked on once. Today's nurse still couldn't get the second port to work, so the doctor decided to leave it alone and let it close up since it's probably already clotted anyway. But, at least she didn't get poked, and she has one port that works.
She had some visitors today which she enjoyed, but it made her really tired this evening. She went down for an MRI at 8 pm, but couldn't make it through the whole test because her head was hurting too bad. We hurried into the room to find her crying in pain. We will try to get the second series of pictures done in the morning. We got back upstairs and she began puking again...just too much movement and lights for her to take.
The nurses all note how smart she is. She remembers everything, knows all her medications, when they're due and how often she can/has to have them. She's getting better about getting her shots in the stomach, just winses from the stinging a bit. She's had a whole day of nutrition as of tonight and I am thankful. I joked to the oncologist that she was beginning to be Gondhi, and Carol laughed at me. :) She's lost over 20 pounds so far, but starving yourself isn't the way to do it! :0)
Today her room looks very cute. We have flowers, stuffed animals and packages from so many family and friends. We are so thankful. She has so many cards at home on my dresser (she had been sleeping in my room which is closer to the bathroom) that it could hardly hold them all. She always smiles and appreciates anyone who cares. I read to her people's posts on Facebook or emails I receive, and she is grateful. She is still shy about all the kids knowing at school, but I think that might be normal for a 13 year old girl. No one wants to stick out. In due time...
She had some visitors today which she enjoyed, but it made her really tired this evening. She went down for an MRI at 8 pm, but couldn't make it through the whole test because her head was hurting too bad. We hurried into the room to find her crying in pain. We will try to get the second series of pictures done in the morning. We got back upstairs and she began puking again...just too much movement and lights for her to take.
The nurses all note how smart she is. She remembers everything, knows all her medications, when they're due and how often she can/has to have them. She's getting better about getting her shots in the stomach, just winses from the stinging a bit. She's had a whole day of nutrition as of tonight and I am thankful. I joked to the oncologist that she was beginning to be Gondhi, and Carol laughed at me. :) She's lost over 20 pounds so far, but starving yourself isn't the way to do it! :0)
Today her room looks very cute. We have flowers, stuffed animals and packages from so many family and friends. We are so thankful. She has so many cards at home on my dresser (she had been sleeping in my room which is closer to the bathroom) that it could hardly hold them all. She always smiles and appreciates anyone who cares. I read to her people's posts on Facebook or emails I receive, and she is grateful. She is still shy about all the kids knowing at school, but I think that might be normal for a 13 year old girl. No one wants to stick out. In due time...
Wednesday, February 9, 2011
The road to cancer
So many people ask how we knew there was something wrong...The story from the beginning until now.
Megan first felt a small knot on the right side of her neck back in October after being sick for a week. After a few weeks we went to the doctor and she gave her antibiotics for 10 days. We went back to the doctor after 14 days when it hadn't gone away. The Dr. had her get a chest xray and some lab work done. They all came back fine. She called a surgeon who recommended we wait a month and if it didn't go away, come see him. We only waited two weeks because the knot was getting larger and was causing pain. It took 10 days to get into see the surgeon. He recommended it be removed. He said it was probably an infected lymph node, but he'd biopsy it and culture it. Two weeks later she had surgery on Thursday, January13.
The surgery was supposed to last 30 minutes, and it drug on. After about 90 minutes, finally the surgeon came on. He broke the news -- it was cancer. He said it was a malignent carcenoma and she'd need chemo and radiation to shrink the tumor. An oncologist came in to talk to us and I gave permission for a port to be surgically placed in her chest. After another 90 minutes, she was in recovery. She was sent home later that evening. She was in a lot of pain, but ok.
The next two weeks was a whirlwind of hurry up and wait. So nerve wracking waiting on answers and visiting cancer doctors. The final biopsy report came back on the Monday after the surgery. It wasn't what they thought - it was thyroid cancer. Great news! Thyroid cancer seems to be the easiest to treat and cure. NO chemo! Megan was so excited she wouldn't have to lose her hair. :) Weird thing though, it's mostly an adult cancer, so our oncologists rarely see a kid with thyroid cancer. Wednesday she had a CT scan.
Thursday, we visited a head and neck surgeon. News to me, one had seen her in the operating room. So, we saw him. He looked at her CT scan (I could tell he didn't like what he saw) He saw a cyst on the back of her brain, 2 tumors in her lung, a tumor on her thyroid, and 2 other tumors. He said we needed someone better than him. He referred us on to his partner who specializes in Thyroid's. We saw him on Friday. He said he does 200-300 thyroid surgeries a year. He gave us all the possible complications, but said he would do his best to avoid them. So he would take out her thyroid and hopefully 60 of the 70 lymph nodes on the right side of her neck.
The surgery was the next Friday. It was supposed to take around 5 hours and start at 11:30. He was late and they didn't take her back until 1:00 pm. The surgeon finally came out around 7 pm. He said the cancer was agressive and massive and we would probably battle this for many years to come. He took out the thyroid which had a tumor on it, 3 other large tumors, part of the parathyroid (he left 2 strands of it, and all she needed was 1 to survive. It controls the calcium and Vitamin D) He also had to take a juglar vein and a voice nerve. He said she could live without the vein and it was all just surrounded by the cancer. He didn't think the voice nerve could even work after the surgery, even if he was able to leave it. He wasn't sure if her other voice nerve would work. If not, she would need a trake to talk. If it did work, he could do another surgery to repair her voice. Not great news, but she was in recovery.
She spent Friday night until Sunday afternoon in the PICU. She had 37 staples in her neck with an incision from the left of the bottom of the neck, around the neck and up to the back of her ear. She had two drain tubes out of the bottom of her neck. Her right eye was almost swollen shut. Both of them hurt. Her throat hurt very bad from the tube they had down her throught during surgery. But she could talk! She was softer and a bit raspy, but she could talk! Later the surgeon said it was a miracle. No adult would ever be able to talk after what he did. We were over joyed. He can do a surgery later to repair it, but no rush. yippee!
She continued to feel better and the drains were able to be removed on Monday and Tuesday. She started with a pretty bad headache on Monday night, and the oncologist said to stay, but the surgeon said to go home on Tuesday afternoon, right in the middle of the ice/snow storm! I wish we would have listened to the cancer guy!
Her neck was healing nicely, but her throat, eye, and head pain continued, as well as a buzzing in her ears. It continued to get worse until it was almost unbearable and she started vomitting, so we went back into the hospital on Sunday, Feb. 6. They did a CT in the ER, but it was ok. They admitted her thinking she just had a bad migraine.
On Monday the oncologist asked a nuerologist to come in. He then ordered an MRI. They found blood clots in her brain that was causing her brain to swell and that is what is putting pressure on her eyes, head, and ears causing such horrible pain. UGH. The next day they told us she had a very rare case of vein thrombosis. She had many series of blood clots in her brain, and today the neurologist showed me 3 pictures of her brain. You can see 5 major clusters of clots. He thinks this is caused by removing the jugular vein during the surgery. That vein had probably been the major vein pumping blood out of her brain and through the neck. From it being removed, it then caused a backup of blood, causing blood clots to form all through the vein system in her brain. The surgeon disagrees, of course. (I still love the surgeon who did a fantastic job)
The neurologist and surgeon both have never seen a case like this in all their years in medicine. The neuro had been researching online to find another case like hers and so far he can't find one. The oncologist today said he called the National Cancer Institute to see if they had ever seen anything like it - and of course - NO. So, we are in uncharted waters, hoping they find the best solution. So far they are giving her shots of blood thinner in her belly twice a day to help prevent future clots and help dissapate the ones she has. They are contemplating ways to get the swelling down in her brain to give her pain relief. They are thinking of giving her steroids or doing a spinal tap to remove fluid. The Dr.'s are supposed to converse and come up with a plan. They will do another MRI next week to evaluate the clots.
She is getting Dilaudid for pain every two hours, and it seems to really be helping, until it wears off. Plus she gets Vitamin D, Calcium, Thyroid medicine, stool softener, and her asthma meds. Oh joy. She also has to get blood drawn for labs 3 hours after her blood thinner is given. They also drew a bunch of blood yesterday to run some genetic testing for anticoagulent studies to see if she has a predisposition for clotting. (results in a week) No history on my side or her dad's sides that we know of.
A pediatric opthomologist came to see her today also. He checked her vision because her eyes have hurt since she first got out of surgery, and haven't gotten better. She also started having blurred and double vision. He says it's all related to the brain swelling putting pressure on her eyes. He thinks it will go back to normal after all the swelling and pressure go away. He can't explain the pain on her eyeballs and the numbing drops didn't help. bummer.
A huge problem has also been her port, a devise that was put in surgically during her first surgery. It is what they use instead of an IV. It goes directly into a large vein and is used to give chemo, draw labs, give fluids, etc. It was what caused her the most pain in the beginning and it continues to do so. Every nurse that sees it says it's in a weird spot. It's on the right side of her left breast and the nurses have had a lot of problems accessing it. They have stuck her at least 12 times since Sunday night trying to access it, plus she's had 2 IV's. She hates needles so bad and just fretts and cries every time they mess with the port. So today they decided to get a dye-injected xray done to see where the needle was in the port. And we found that she had a duo port, (2 access points) not just a single port! UGH. The needle was NOT in the port, so back we went to get re-stuck. We have had 8 nurses try to access the port. Finally around 6 pm tonight they accessed both sides of the port. Unfortunately, only 1 ended up really working, but hey, at least 1 is working! So after 13 days of not eating, tonight at 10 pm they put in TPN, a feeding tube, 1 huge bag of fluid nutrients and 1 smaller bag of fat. Thank God!! Her feet today got tingly and cold and the dr. thinks getting protein in her system will help that. I sure hope so.
Such a rough road, but we're doing our best. Time for bed...got another blood draw at 1 am and they're going to check the port every 2 hours tonight. FUN! :)
Megan first felt a small knot on the right side of her neck back in October after being sick for a week. After a few weeks we went to the doctor and she gave her antibiotics for 10 days. We went back to the doctor after 14 days when it hadn't gone away. The Dr. had her get a chest xray and some lab work done. They all came back fine. She called a surgeon who recommended we wait a month and if it didn't go away, come see him. We only waited two weeks because the knot was getting larger and was causing pain. It took 10 days to get into see the surgeon. He recommended it be removed. He said it was probably an infected lymph node, but he'd biopsy it and culture it. Two weeks later she had surgery on Thursday, January13.
The surgery was supposed to last 30 minutes, and it drug on. After about 90 minutes, finally the surgeon came on. He broke the news -- it was cancer. He said it was a malignent carcenoma and she'd need chemo and radiation to shrink the tumor. An oncologist came in to talk to us and I gave permission for a port to be surgically placed in her chest. After another 90 minutes, she was in recovery. She was sent home later that evening. She was in a lot of pain, but ok.
The next two weeks was a whirlwind of hurry up and wait. So nerve wracking waiting on answers and visiting cancer doctors. The final biopsy report came back on the Monday after the surgery. It wasn't what they thought - it was thyroid cancer. Great news! Thyroid cancer seems to be the easiest to treat and cure. NO chemo! Megan was so excited she wouldn't have to lose her hair. :) Weird thing though, it's mostly an adult cancer, so our oncologists rarely see a kid with thyroid cancer. Wednesday she had a CT scan.
Thursday, we visited a head and neck surgeon. News to me, one had seen her in the operating room. So, we saw him. He looked at her CT scan (I could tell he didn't like what he saw) He saw a cyst on the back of her brain, 2 tumors in her lung, a tumor on her thyroid, and 2 other tumors. He said we needed someone better than him. He referred us on to his partner who specializes in Thyroid's. We saw him on Friday. He said he does 200-300 thyroid surgeries a year. He gave us all the possible complications, but said he would do his best to avoid them. So he would take out her thyroid and hopefully 60 of the 70 lymph nodes on the right side of her neck.
The surgery was the next Friday. It was supposed to take around 5 hours and start at 11:30. He was late and they didn't take her back until 1:00 pm. The surgeon finally came out around 7 pm. He said the cancer was agressive and massive and we would probably battle this for many years to come. He took out the thyroid which had a tumor on it, 3 other large tumors, part of the parathyroid (he left 2 strands of it, and all she needed was 1 to survive. It controls the calcium and Vitamin D) He also had to take a juglar vein and a voice nerve. He said she could live without the vein and it was all just surrounded by the cancer. He didn't think the voice nerve could even work after the surgery, even if he was able to leave it. He wasn't sure if her other voice nerve would work. If not, she would need a trake to talk. If it did work, he could do another surgery to repair her voice. Not great news, but she was in recovery.
She spent Friday night until Sunday afternoon in the PICU. She had 37 staples in her neck with an incision from the left of the bottom of the neck, around the neck and up to the back of her ear. She had two drain tubes out of the bottom of her neck. Her right eye was almost swollen shut. Both of them hurt. Her throat hurt very bad from the tube they had down her throught during surgery. But she could talk! She was softer and a bit raspy, but she could talk! Later the surgeon said it was a miracle. No adult would ever be able to talk after what he did. We were over joyed. He can do a surgery later to repair it, but no rush. yippee!
She continued to feel better and the drains were able to be removed on Monday and Tuesday. She started with a pretty bad headache on Monday night, and the oncologist said to stay, but the surgeon said to go home on Tuesday afternoon, right in the middle of the ice/snow storm! I wish we would have listened to the cancer guy!
Her neck was healing nicely, but her throat, eye, and head pain continued, as well as a buzzing in her ears. It continued to get worse until it was almost unbearable and she started vomitting, so we went back into the hospital on Sunday, Feb. 6. They did a CT in the ER, but it was ok. They admitted her thinking she just had a bad migraine.
On Monday the oncologist asked a nuerologist to come in. He then ordered an MRI. They found blood clots in her brain that was causing her brain to swell and that is what is putting pressure on her eyes, head, and ears causing such horrible pain. UGH. The next day they told us she had a very rare case of vein thrombosis. She had many series of blood clots in her brain, and today the neurologist showed me 3 pictures of her brain. You can see 5 major clusters of clots. He thinks this is caused by removing the jugular vein during the surgery. That vein had probably been the major vein pumping blood out of her brain and through the neck. From it being removed, it then caused a backup of blood, causing blood clots to form all through the vein system in her brain. The surgeon disagrees, of course. (I still love the surgeon who did a fantastic job)
The neurologist and surgeon both have never seen a case like this in all their years in medicine. The neuro had been researching online to find another case like hers and so far he can't find one. The oncologist today said he called the National Cancer Institute to see if they had ever seen anything like it - and of course - NO. So, we are in uncharted waters, hoping they find the best solution. So far they are giving her shots of blood thinner in her belly twice a day to help prevent future clots and help dissapate the ones she has. They are contemplating ways to get the swelling down in her brain to give her pain relief. They are thinking of giving her steroids or doing a spinal tap to remove fluid. The Dr.'s are supposed to converse and come up with a plan. They will do another MRI next week to evaluate the clots.
She is getting Dilaudid for pain every two hours, and it seems to really be helping, until it wears off. Plus she gets Vitamin D, Calcium, Thyroid medicine, stool softener, and her asthma meds. Oh joy. She also has to get blood drawn for labs 3 hours after her blood thinner is given. They also drew a bunch of blood yesterday to run some genetic testing for anticoagulent studies to see if she has a predisposition for clotting. (results in a week) No history on my side or her dad's sides that we know of.
A pediatric opthomologist came to see her today also. He checked her vision because her eyes have hurt since she first got out of surgery, and haven't gotten better. She also started having blurred and double vision. He says it's all related to the brain swelling putting pressure on her eyes. He thinks it will go back to normal after all the swelling and pressure go away. He can't explain the pain on her eyeballs and the numbing drops didn't help. bummer.
A huge problem has also been her port, a devise that was put in surgically during her first surgery. It is what they use instead of an IV. It goes directly into a large vein and is used to give chemo, draw labs, give fluids, etc. It was what caused her the most pain in the beginning and it continues to do so. Every nurse that sees it says it's in a weird spot. It's on the right side of her left breast and the nurses have had a lot of problems accessing it. They have stuck her at least 12 times since Sunday night trying to access it, plus she's had 2 IV's. She hates needles so bad and just fretts and cries every time they mess with the port. So today they decided to get a dye-injected xray done to see where the needle was in the port. And we found that she had a duo port, (2 access points) not just a single port! UGH. The needle was NOT in the port, so back we went to get re-stuck. We have had 8 nurses try to access the port. Finally around 6 pm tonight they accessed both sides of the port. Unfortunately, only 1 ended up really working, but hey, at least 1 is working! So after 13 days of not eating, tonight at 10 pm they put in TPN, a feeding tube, 1 huge bag of fluid nutrients and 1 smaller bag of fat. Thank God!! Her feet today got tingly and cold and the dr. thinks getting protein in her system will help that. I sure hope so.
Such a rough road, but we're doing our best. Time for bed...got another blood draw at 1 am and they're going to check the port every 2 hours tonight. FUN! :)
As most of you know, Megan is back in the hospital. She has a vein thrombosis which is pretty rare. They believe removing the jugular vein is probably what caused this. Her vein system is backin up causing a whole series of clotting which is causing her brain to swell. There is a concern that until they get enough medicine in to break up the clot, it is possible that Megan could have a stroke.
I went to sit with Christine for a couple of hours yesterday and happened to arrive as the doctor was there. They are going to run a series of tests to make sure the blood clot was due to the surgery and not some underlying problem. They have also said she is at risk for the next 2 days until they can get enough medicine in. So, many odd things have happened to her, that he said this is not cut and dry, but they think they can get this under control and she will be ok.
She is having to take injections twice a day for the medicine and each shot burns. They said that would be for about 3 weeks. Megan's eyes are hurting her (my guess from the pressure in her brain) and so there are no lights on in her room, no TV and she is simply laying in bed with her eyes closed resting most of the time.They have asked for no visitors for now.
I went to sit with Christine for a couple of hours yesterday and happened to arrive as the doctor was there. They are going to run a series of tests to make sure the blood clot was due to the surgery and not some underlying problem. They have also said she is at risk for the next 2 days until they can get enough medicine in. So, many odd things have happened to her, that he said this is not cut and dry, but they think they can get this under control and she will be ok.
She is having to take injections twice a day for the medicine and each shot burns. They said that would be for about 3 weeks. Megan's eyes are hurting her (my guess from the pressure in her brain) and so there are no lights on in her room, no TV and she is simply laying in bed with her eyes closed resting most of the time.They have asked for no visitors for now.