To all:
I have created a new website for Mikayla. Visit it at http://www.caringbridge.org/visit/mikaylafrazier
I am going to try and copy everything from this site to the new one. If you have problems getting to that site send us an email at cnsfraz@hotmail.com
Thanks! - Sasha
Wednesday, November 28, 2007
Friday, November 23, 2007
Nov 23
Hope you all had a happy thanksgiving. This has been quite an unusual year for our family, so many ups and downs it is hard to keep track. In the end we still find much to be thankful. The Colts won the super bowl, then Lance (Sasha's Brother) was in an explosion at his old house receiving 3rd degree burns to the face and hands, and a lengthy stay in the burn unit, then we went to Disney Land (hard to believe the tumor was growing inside her then), then the Basement Floods, then we get a new and improved basement, then Mikayla's diagnosis Oct 19.
Certainly Mikayla's diagnosis was a big blow to us. But she is pushing through with the chemo, trying to go to school as much as her body lets her, she is trying another wean of the steroids, and her overall prognosis after 70 weeks of chemo seems good. Things could be much worse, so we will be thankful that we have her with us, and Jacob and Grace too! The steroids make her affect very flat. We try to keep her busy and interacting, other she sits and stares. She wakes up (mom and dad with her) multiple times a night. She has made it through 3 weeks of chemo with few side effects. She has an MRI scheduled on Dec 7 at Riley. We are praying there is no increase in tumor size. We don't expect it to have shrunk.
That is all for now, we will keep all of you in our prayers as you have done for us. We continue to pray for Ethan Teeple (I mentioned him in a previous blog) as his condition has significantly declined, his family continues to remain strong and pray God will ease his pain as he opens his arms to Ethan.
Chris
Certainly Mikayla's diagnosis was a big blow to us. But she is pushing through with the chemo, trying to go to school as much as her body lets her, she is trying another wean of the steroids, and her overall prognosis after 70 weeks of chemo seems good. Things could be much worse, so we will be thankful that we have her with us, and Jacob and Grace too! The steroids make her affect very flat. We try to keep her busy and interacting, other she sits and stares. She wakes up (mom and dad with her) multiple times a night. She has made it through 3 weeks of chemo with few side effects. She has an MRI scheduled on Dec 7 at Riley. We are praying there is no increase in tumor size. We don't expect it to have shrunk.
That is all for now, we will keep all of you in our prayers as you have done for us. We continue to pray for Ethan Teeple (I mentioned him in a previous blog) as his condition has significantly declined, his family continues to remain strong and pray God will ease his pain as he opens his arms to Ethan.
Chris
Saturday, November 17, 2007
Saturday November 17
Sorry we have not posted in a few days, but as they say...life does go on. We are just going on in a new "normal" way. Mikayla being the trooper that she is went to school all day on Wednesday and Thursday. We encouraged her to stay home for a little bit on Friday as she was exhausted, but she wanted nothing of that! I did end up picking her up from school on Friday around noon. I knew she was tired when she didn't argue with me. The side effects from the chemo this week have been pretty mild. Pretty much she is just tired all the time. The dr. did try to start weaning her off the steroids, but on Thursday her headaches returned. When another headache on Friday occured, I called the dr. and he recommended that we go back to steroids 3x/day and we will try again next week to start to wean.
She wants to be as normal as possible. Chris & I struggle with how much to let her do because we know she is so tired, but it is hard to say no when she wants to go somewhere. We went to the school carnival on Friday night and Grace danced today in a mini recital and she wanted to go along to that as well. She also wants so badly to be at school - she doesn't want to miss. She has already asked her teacher what she will miss on Tuesday and when she is at school she wants to go back and make up the things she missed out on. We have not let her go back to recess, so even during a time when she could play in the classroom, she wants to work on schoolwork! Now if that will only follow through the teenage years....
I read something the other day that really stuck in my head...."If God brings you to it, He will bring you through it." How true that is. We have always been taught and always believed that God will never give you more than you can handle. We now realize that how He is "bringing us through it" or how we are handling this situation is because God brought each of you into our lives as friends. You all define the word friendship. Never in a million years will Chris & I be able to repay the kindness that has been bestowed upon our family in the past month. Our only hope is that someday we will be able to "pay it forward" to someone else. Thank you again for all your thoughts and prayers. We know you are all busy with your own lives and own children and own set of problems and crisis' that occur. For you to take the time and pray for Mikayla means the world to us. - Sasha
She wants to be as normal as possible. Chris & I struggle with how much to let her do because we know she is so tired, but it is hard to say no when she wants to go somewhere. We went to the school carnival on Friday night and Grace danced today in a mini recital and she wanted to go along to that as well. She also wants so badly to be at school - she doesn't want to miss. She has already asked her teacher what she will miss on Tuesday and when she is at school she wants to go back and make up the things she missed out on. We have not let her go back to recess, so even during a time when she could play in the classroom, she wants to work on schoolwork! Now if that will only follow through the teenage years....
I read something the other day that really stuck in my head...."If God brings you to it, He will bring you through it." How true that is. We have always been taught and always believed that God will never give you more than you can handle. We now realize that how He is "bringing us through it" or how we are handling this situation is because God brought each of you into our lives as friends. You all define the word friendship. Never in a million years will Chris & I be able to repay the kindness that has been bestowed upon our family in the past month. Our only hope is that someday we will be able to "pay it forward" to someone else. Thank you again for all your thoughts and prayers. We know you are all busy with your own lives and own children and own set of problems and crisis' that occur. For you to take the time and pray for Mikayla means the world to us. - Sasha
Tuesday, November 13, 2007
Tuesday Nov 13
Mikayla went to Lutheran today for week 1 of chemotherapy (last week was week 0). She did very well. She continues to ask questions to make sure she knows what is going on. Everytime something is done to her now, she wants to know if she is getting poked with a needle for an IV. Thankfully she has the port that we cover with numbing cream (emla) before accessing the port. She didn't feel it at all. As long as she knows what is happening she is tolerant to most anything. The steroids continue to make her moods swing. At times she is higher than a kite, which makes Sasha and I laugh. Other times is more snippy and we just avoid her. The steroids also makes her very puffy and swollen. One chemo days she gets alot of iv fluids so she is even more swollen tonight.
She made it through a whole day of school Monday and was able to see sister Grace sing in the Veterans day program (2 were selected from each class to perform). Mikayla was pretty tired after school. We will see how she does tommorow. The one thing that makes her the happiest is being at school with her friends so we let her do as much as she can tolerate. Generally she tells us when she has had enough and takes a nap or goes to bed. She even makes sure she gets her medicine before she sleeps as she requested it tonight. Right now besides the chemo, she is on 3 regular medicines and 1 as needed for nausea (she will get it regularly for the next 2 days), plus tylenol for her pain from the chemo (love side effects).
We continue to be amazed by the cards, emails, gifts we have received. We are told people are praying all over the world, as word of Mikayla passes on. We have received cards from many people we don't even know, but they heard of Mikayla's story and wanted to send a card or gift.
I would ask the you add to your prayers all children suffering from cancer or brain tumors, we have come across so many children afflicted with this terrible disease, many with a worse prognosis than Mikayla. A particular child is Ethan Teeple. His cancer doesn't seem to be responding to his current chemo protocol and will need to be admitted for inpatient chemotherapy at Riley. Ethan's parents actually went to Huntington College at the same time as Sasha, and then became reaquainted with her when Lance (Sasha's Brother) was burned in a furnance explosion last Feb. They helped out at a breakfast to raise money for Lance's medical expenses at his church. Anyway we somehow ran into the Teeple family when Sasha and I went out to eat on our first night alone since Mikayla's diagnosis; they provided us with comfort that we will be able to get through this and that brief meeting meant alot to us that night. We continue to have faith in God's plan for both Ethan and Mikey, but it sure is hard when you see them suffer.
Thanks to all
Chris
She made it through a whole day of school Monday and was able to see sister Grace sing in the Veterans day program (2 were selected from each class to perform). Mikayla was pretty tired after school. We will see how she does tommorow. The one thing that makes her the happiest is being at school with her friends so we let her do as much as she can tolerate. Generally she tells us when she has had enough and takes a nap or goes to bed. She even makes sure she gets her medicine before she sleeps as she requested it tonight. Right now besides the chemo, she is on 3 regular medicines and 1 as needed for nausea (she will get it regularly for the next 2 days), plus tylenol for her pain from the chemo (love side effects).
We continue to be amazed by the cards, emails, gifts we have received. We are told people are praying all over the world, as word of Mikayla passes on. We have received cards from many people we don't even know, but they heard of Mikayla's story and wanted to send a card or gift.
I would ask the you add to your prayers all children suffering from cancer or brain tumors, we have come across so many children afflicted with this terrible disease, many with a worse prognosis than Mikayla. A particular child is Ethan Teeple. His cancer doesn't seem to be responding to his current chemo protocol and will need to be admitted for inpatient chemotherapy at Riley. Ethan's parents actually went to Huntington College at the same time as Sasha, and then became reaquainted with her when Lance (Sasha's Brother) was burned in a furnance explosion last Feb. They helped out at a breakfast to raise money for Lance's medical expenses at his church. Anyway we somehow ran into the Teeple family when Sasha and I went out to eat on our first night alone since Mikayla's diagnosis; they provided us with comfort that we will be able to get through this and that brief meeting meant alot to us that night. We continue to have faith in God's plan for both Ethan and Mikey, but it sure is hard when you see them suffer.
Thanks to all
Chris
Saturday, November 10, 2007
November 10
So far we have had a pretty good weekend. I took Mikayla to school Friday around 10:30. She really wanted to go and eat lunch at school! She seems to do just fine at school - our goal is to go all day on Monday - oh yes and she wants to ride the bus! I suppose it takes her mind off things and it is good to be around all her friends. Her friends at school have really missed her and it is so sweet to see how caring they all are. Even at 5 years old, children know so much more than we give them credit for. She is doing so good at taking her medicine - she has 2 different kinds 3x a day, plus tylenol for her aches and pains. Hardly ever complains although that might have to do with the fact that she gets candy afterwards. Some of the side effects are starting to subside (nausea, back pain) but of course that will start up again as we go for more chemo on Tuesday. That is about it for now. Will update you more on Tuesday if not before. Chris and I continue to look for the positives in all of this and the main positive in all of this has been all of you and your support. I can say it a million times and it will never be enough - thank you! - Sasha
Wednesday, November 7, 2007
November 7, 2007
We did get home last night around 8pm. Every minute of yesterday, Mikayla asked when she could go home. She didn't want to do anything because I think she thought if she started doing something (craft, tv, playroom) she would miss going home.
Ah, home. I think at times Chris & I got more rest in the hospital. Seemed today someone was crying or whining every minute of the day. Everything hit me yesterday that this is so real and that she is going through chemo. All the info we received yesterday about blood counts, medicine, side effects, hosptial visits, etc. just overwhelmed me with what all we are going to have to deal with over the next two years. As we were leaving the hospital yesterday, Mikayla's nurse said "See you next time!" I wanted to shout "Hopefully there won't be a next time!!" but I know that there probably will.
The good news is that at least for this month and next month (the 1st 10 weeks of the program) we are set up for our chemo treatments at Lutheran. Every Tuesday from now until Dec. 18 she will go there for a chemo treatment. Should last around 3-4 hours. (meds go in through her port line - similar to being hooked up through an IV, but with the port, they do not have to put an iv in everytime.) She will get blood counts each week to check her levels and to make sure they have not dropped too low (which would make her more prone to infection) The week of the 18th we start 5 days of oral meds (at home) and then we have a 3 week rest period of no meds, but just going in weekly for blood draws. Then we will have another MRI and re-evaluate treatment if necessary. If all looks good then the above cycle continues for 60 more weeks!
She was a little nauseous this am, but we battled that with meds. This evening she was complaining of back pain. One of the side effects is achiness and pain in the legs & back. It is so hard to see your normally high energy, spirited, smiley little girl who never sits still be feeling so bad, barely crack a smile all day and know that you can't do anything about it. She wanted to go to school all day, I finally took her in around 2pm. That was the happiest I had seen her all day long. Depending on how she feels, we will probably try a 1/2 day tomorrow.
Don't be alarmed if we don't update everyday...between keeping up with Mikayla and chasing Jacob (he picked a wonderful time of the terrible twos to kick into high gear) and running Grace to her activities there isn't much computer time. Thank you once again for your thoughts and prayers. - Sasha
Ah, home. I think at times Chris & I got more rest in the hospital. Seemed today someone was crying or whining every minute of the day. Everything hit me yesterday that this is so real and that she is going through chemo. All the info we received yesterday about blood counts, medicine, side effects, hosptial visits, etc. just overwhelmed me with what all we are going to have to deal with over the next two years. As we were leaving the hospital yesterday, Mikayla's nurse said "See you next time!" I wanted to shout "Hopefully there won't be a next time!!" but I know that there probably will.
The good news is that at least for this month and next month (the 1st 10 weeks of the program) we are set up for our chemo treatments at Lutheran. Every Tuesday from now until Dec. 18 she will go there for a chemo treatment. Should last around 3-4 hours. (meds go in through her port line - similar to being hooked up through an IV, but with the port, they do not have to put an iv in everytime.) She will get blood counts each week to check her levels and to make sure they have not dropped too low (which would make her more prone to infection) The week of the 18th we start 5 days of oral meds (at home) and then we have a 3 week rest period of no meds, but just going in weekly for blood draws. Then we will have another MRI and re-evaluate treatment if necessary. If all looks good then the above cycle continues for 60 more weeks!
She was a little nauseous this am, but we battled that with meds. This evening she was complaining of back pain. One of the side effects is achiness and pain in the legs & back. It is so hard to see your normally high energy, spirited, smiley little girl who never sits still be feeling so bad, barely crack a smile all day and know that you can't do anything about it. She wanted to go to school all day, I finally took her in around 2pm. That was the happiest I had seen her all day long. Depending on how she feels, we will probably try a 1/2 day tomorrow.
Don't be alarmed if we don't update everyday...between keeping up with Mikayla and chasing Jacob (he picked a wonderful time of the terrible twos to kick into high gear) and running Grace to her activities there isn't much computer time. Thank you once again for your thoughts and prayers. - Sasha
Tuesday, November 6, 2007
11/6 1220 pm
Sorry no post yesterday as it was very upside down, drag out day, kinda like the colts game. But Mikayla, Sasha and I didn't blow it like the offense did (not the defense). Anyway about 6 am yesterday we found out the Port Placement was pushed back to 2 pm. But we were able to get the MRI schedule into the morning. She was fasting so when you take a 5 year old on steroids and tell her not to eat, it is not pretty. She got through the mri great, actually fell asleep. Then we occupied her time as much as we could the rest the day. The surgery continued to get pushed back until finally we took her down to surgery at almost 7pm. The port placement went well as expected.
The time in between the port and the mri was very hard. Mikayla wanted to go home and wanted to eat. She desperately wants to be back at school. Sasha and I did the best we could taking her for walks, crafts , games but it is hard. You can't blame her for wanting to cry. I think both Sasha and I cried inside with her. After the surgery she slept. Her primary food request was a soft taco from taco bell. She ate one at 1 am this morning and the 2nd at 4 am. Yummy!
No more headaches and vomiting since in the er. She is still clumsy and leaning head to the right. We talked with the oncologist after the MRI yesterday and he and the radiologist felt there was no change in size from the previous mri, which makes us think it was inflammation on the ct scan. for info - MRI can show much more detail than a Ct scan. I was unable to talk with neurosurgeon yet as we were off the floor when he came up. I don't want to get too relieved until I get his take on the changes. This has already been too much of a roller coaster of emotions for me to get too excited yet. Today, well, she still wants to go home and if things go as planned we should be able to break her out of this place sometime late this afternoon. She is starting her chemotherapy as I type this. She still needs to get her stitches out and I still need to meet with the neurosurgeon before we go. Sasha and I got a lot of information from the nurse educator, children's life specialist ( they coordinate activities and keep the playroom up to date for the kids) and the social worker. All had good information to help all of my family get through this journey. This continues to be very hard on Grace who got to visit on Sunday. Apparently another child at school told her Mikayla could die, so when we were rushing around on saturday to bring mikayla to the er Grace broke down crying. The only one who hasn't been too phased by this (except for missing mama) is Jacob. He is spaz and still high on candy (his new word) from halloween.
Thank you to Wayne Center (Mikayla's school) for rallying a pop tab collection in Mikayla's honor, there was even an article in the newspaper. All though we didn't sleep in the Ronald McDonal house this time I still went there to relax and eat a few times. Sasha stayed at My cousin Mike's house as I assumed my position next to Mikayla in the room. Thank you to all of those who have helpded with Grace, Jacob, patches and my home.
Mikayla also made a friend, her roomate Laney (4 year old, already on chemo) and her found a companion to lean on during each of their difficult times.
Please continue with your prayers, we are trying to keep our faith strong and know God has a plan for Mikayla that is out of our control, where this journey will take us we don't know but I can't imagine our father has anything but the best in store for her down the road. Certainly it is easy to doubt this the way I felt yesterday and Nov 19 when the radiologist called me about her CT scan.
Chris
The time in between the port and the mri was very hard. Mikayla wanted to go home and wanted to eat. She desperately wants to be back at school. Sasha and I did the best we could taking her for walks, crafts , games but it is hard. You can't blame her for wanting to cry. I think both Sasha and I cried inside with her. After the surgery she slept. Her primary food request was a soft taco from taco bell. She ate one at 1 am this morning and the 2nd at 4 am. Yummy!
No more headaches and vomiting since in the er. She is still clumsy and leaning head to the right. We talked with the oncologist after the MRI yesterday and he and the radiologist felt there was no change in size from the previous mri, which makes us think it was inflammation on the ct scan. for info - MRI can show much more detail than a Ct scan. I was unable to talk with neurosurgeon yet as we were off the floor when he came up. I don't want to get too relieved until I get his take on the changes. This has already been too much of a roller coaster of emotions for me to get too excited yet. Today, well, she still wants to go home and if things go as planned we should be able to break her out of this place sometime late this afternoon. She is starting her chemotherapy as I type this. She still needs to get her stitches out and I still need to meet with the neurosurgeon before we go. Sasha and I got a lot of information from the nurse educator, children's life specialist ( they coordinate activities and keep the playroom up to date for the kids) and the social worker. All had good information to help all of my family get through this journey. This continues to be very hard on Grace who got to visit on Sunday. Apparently another child at school told her Mikayla could die, so when we were rushing around on saturday to bring mikayla to the er Grace broke down crying. The only one who hasn't been too phased by this (except for missing mama) is Jacob. He is spaz and still high on candy (his new word) from halloween.
Thank you to Wayne Center (Mikayla's school) for rallying a pop tab collection in Mikayla's honor, there was even an article in the newspaper. All though we didn't sleep in the Ronald McDonal house this time I still went there to relax and eat a few times. Sasha stayed at My cousin Mike's house as I assumed my position next to Mikayla in the room. Thank you to all of those who have helpded with Grace, Jacob, patches and my home.
Mikayla also made a friend, her roomate Laney (4 year old, already on chemo) and her found a companion to lean on during each of their difficult times.
Please continue with your prayers, we are trying to keep our faith strong and know God has a plan for Mikayla that is out of our control, where this journey will take us we don't know but I can't imagine our father has anything but the best in store for her down the road. Certainly it is easy to doubt this the way I felt yesterday and Nov 19 when the radiologist called me about her CT scan.
Chris
Monday, November 5, 2007
11/5/07 6am
Just real quick before i leave for the hospital. found out last night around 10:30 that mikayla is having her port surgery today @ 9:30am. Drs. wanted that to heal a little before she starts her chemo. MRI will be on Tuesday then. I'm sure she will do well. she will be most upset about not being able to eat this am when she wakes up. - Sasha
Sunday, November 4, 2007
November 4 10:00pm
Today had its ups and downs. Worst part of the day was when the Colts lost. Chris fought the urge to go talk to Coach Dungy during the 4th quarter....he figured since we were so close perhaps he would try. :>) The effects of the steroids have kicked in....we have our highs, our lows, and our mean streaks. I am at least a little more emotionally able to handle the mean streaks now than I was 2 weeks ago. Mikayla has a roommate with her who is 4 years old. The two of them are getting along really well. They have made all these "grand plans" for tomorrow either though both of them have no clue that they will not be able to do most of what they want. Mikayla's most common request is food. Every other minute we hear "I'm starving!" No clue to where she is putting all the food she eats. She is scheduled to get an MRI tomorrow and surgery for her port on Tuesday. Will have to wait and see what the MRI shows as to what is going on with the chemo treatment plan. We hope it is the same and the tumor hasn't changed or grown significantly. All the cards and notes you all have sent have been wonderful! We have saved some of them and opened some tonight in the hospital. It gives her something to do and she loves getting mail! Thanks for all your prayers and thoughts! Knowing that there are so many people out there who are thinking of us and praying for our whole family gives us the strengh to get through each day. For those of you who have responded and left comments on the blog - thank you - it is nice to read your kind words of encouragement. - Sasha
Saturday, November 3, 2007
November 3 10:00 pm
First of all, let me apoligize to those of you we are closest to for updating you via this blog instead of a phone call. But again this is the quickest way and I will try not to forget inf0. We are once again down at Riley. Everything was going fine, but mikayla woke up this morning around 2am vomiting and continued to vomit all night long. This of course is a concern because of the shunt and if it was working correctly or not. Around 8isham I talked with the resident on call and he suggested that we come into Riley ER. So we packed our bags and left. They have admitted her through the weekend (probably through Tuesday) to watch her and start her on another round of steroids. Oh yea here come the mood swings. (and the hunger!) Some of the most unsettling news is that when they did the CT scan the tumor seemed to be a bit larger which if it is a slow growing low grade tumor should not be the case. Right now we are just in a waiting game. They will do another MRI on Monday to determine the size of the tumor and to see if indeed how much it has grown. Then we will revamp the chemo plan if necessary. good news is that the shunt is working properly so that part is ok. we are now on the 5th floor in the cancer unit (because of starting chemo) where there is a playroom and books glalore. mikayla is excited about seeing all of this tomorrow. i am staying at our cousins house in brownsburg tonight - hopefully chris will get to stay here tomorrow and get some rest. they have 3 little kids too so it feels just like home. :>) - keep us and mikayla at the top of your prayers lists! - until tomorrow - Sasha
Thursday, November 1, 2007
Nov 1
A quick update. Mikayla got to trick or treat yesterday. She finished the steroids yesterday. We are watching her pretty close as she started to have headaches again last night and tilting her head more since yesterday. She has been a little clumsy since the surgery and fell twice yesterday. But I think she got tripped up more than anything. We are to give an update to the surgeon (via the nurse tommorow). I hope the change is from being off the steroids and not from malfunction or over functioning of the shunt. A friend was concerned we had gone back to Riley today, but we didn't. The girls are on fall break, we had originally planned a mini vacation but all of that fell through. Please continue with the prayers, the outpouring of generiosity and support has truly been amazing.
Chris
Chris
Tuesday, October 30, 2007
10/30/07
This will be short because honestly I just want to go to bed and sleep. Feel like we haven't gotten a decent nights sleep in over a week. We did go to Riley today and met with the oncologist. He seemed to have a pretty positive outlook on things. We are going to go back to Riley next Tuesday (Nov. 6). She will have another surgery to put in a "port" which will be the line used for her chemo. That will be in the am. Then in the afternoon she will have her first dose of chemotherapy. Normally they would send us home after that. However, we will stay the night in Indy as she goes to see her neurosurgeon on Wednesday for a check up after the biopsy/shunt surgery she had last week. Hopefully will get her stitches out at that time. We are looking at 70 (yes, 70) weeks of chemotherapy. Good news (actually great news) is if everything goes well, most of the treatments can be done at Lutheran!! There is about a 75%-80% success rate with this type of tumor and this kind of treatment. If it doesn't work then there is radiation treatment, but that will be a bridge we don't hopefully have to cross. Obviously the best case scenerio would be if they would have been able to surgerically remove the tumor, but in Mikayla's case to where the tumor was located in the brain, the surgeon thought it would do her more harm than good to try and remove it. We really can't afford to leave it alone and observe it as although it is not cancer per say, it is still growing and causing harm. Therefore we are relying on the chemo to either stabalize the tumor, shrink it, and or cause it to remain dormant (hopefully for good)
What an amazing little girl we have. Today she has been running around and playing just like nothing has ever happened. To see her you would never believe she had brain surgery last week, unless you look closely and see her stitches in her head. Or unless she tells you and lifts up her shirt to show you her stitches on her belly which she will do without you even asking. :>)
All of the prayers you have said on her behalf have been answered. We really couldn't have asked for better news. Let's just hope now that she can tolerate the chemo with minimal side effects and that it will work to shink the tumor so that we don't have to even think about the radiation treatment. I am done for the night. If there are any corrections, I'm sure Chris will post an update. :>) - Sasha
What an amazing little girl we have. Today she has been running around and playing just like nothing has ever happened. To see her you would never believe she had brain surgery last week, unless you look closely and see her stitches in her head. Or unless she tells you and lifts up her shirt to show you her stitches on her belly which she will do without you even asking. :>)
All of the prayers you have said on her behalf have been answered. We really couldn't have asked for better news. Let's just hope now that she can tolerate the chemo with minimal side effects and that it will work to shink the tumor so that we don't have to even think about the radiation treatment. I am done for the night. If there are any corrections, I'm sure Chris will post an update. :>) - Sasha
Monday, October 29, 2007
10/29/07
Wanted to give you a quick update...although we don't have much to report. We had a somewhat "normal" weekend. The girls ended up fighting with each other again on Sunday, so we know things are back to status quo (yes, we watch way to much High School Musical in our house - if that made no sense to you, then count your blessings that you haven't seen the movie 100 times) I took Mikayla to school on Friday for a little bit and again today for a 1/2 day. She did really well and enjoys being back. She is a little upset with us that we won't let her ride the bus or go to school all day yet. I have stayed with her these times when we go in, but I'm sure I am just being too protective as she does fine. All the kids watch out for her and her teacher is wonderful in watching out for her too. I will probably send her on her own Wednesday. This week is fall break so they only have 1/2 day on Wed. and then off the rest of the week. She wore a little scarf around her head today to protect her incisions and so that her stitches would be covered. Her hair does a pretty good job of hiding them, but still kids can still be curious and I don't want her to go through anymore of that than necessary.
We head down to Riley tomorrow morning for an appt. with the oncologist. We are hoping that after tomorrow we will have a game plan of what the next step will be to shrink/get rid of this tumor. Even though it is being considered benign, it is still a danger to her if left as is because of where it is located in the brain and of course we don't want to take the chance that it could turn into a more aggressive type tumor in the future.
So be sure to check back tomorrow for an update of what we found out and where we will be going from here. We hope and pray that tomorrow we will have the answers to our many questions for the future. Get some sleep for us tonight. :>) Keep praying! - Sasha
We head down to Riley tomorrow morning for an appt. with the oncologist. We are hoping that after tomorrow we will have a game plan of what the next step will be to shrink/get rid of this tumor. Even though it is being considered benign, it is still a danger to her if left as is because of where it is located in the brain and of course we don't want to take the chance that it could turn into a more aggressive type tumor in the future.
So be sure to check back tomorrow for an update of what we found out and where we will be going from here. We hope and pray that tomorrow we will have the answers to our many questions for the future. Get some sleep for us tonight. :>) Keep praying! - Sasha
Friday, October 26, 2007
10/26/07 - by Sasha
Chris told me I need to post, but I'm not sure I can do it justice, as he does such a good job! Today was actually a pretty good day. We did end up going to school for a little over an hour. She got to see all her friends and participate in the class activities. It did her good to be back in the swing of things. It is so precious to see all her friends want to give her hugs and say hello. During "writing workshop" I noticed many of them must have been writing stories about her because they were all wanting to know how to spell her name. The whole class made cards for her while she was in the hospital. She enjoys looking through them - it will be a good source of encouragement to look back at all the cards and well wishes over the next many months.
Chris and I are just amazed at all the out pouring of friendship and love that so many of you have bestowed upon us. We will never be able to repay or thank you enough for all the gifts, prayers, food, cards, offers of help, etc. As Chris mentioned in his last post, there is a reason that God lead us to Kendallville and now I believe we know why. To think that just 3 years ago we were strangers to so many of you who have become our support that we have clinged to in the past week. So hard to believe that it has only been one week!
As a family we are slowly getting back to "normal" The kids are starting to fight - Mikayla is once again picking on Jacob and he is yelling back. Grace is back to her 7 year old self looking forward to going to birthday parties, dance and basketball. If you have ever called our house you know our answering machine says "We can't come to the phone because the kids are either eating, fighting or sleeping" the same holds true for now. If you call and we don't answer it still is probably one of those reasons (esp. Mikayla and the eating - although it might be Chris & I sleeping while the kids run wild)
The hardest part right now is adjusting to Mikayla's mood swings. I have told people she has 3 of them....high, low, and mean. When she is "high" it is a stitch. Chris and I just smiled and shook our heads today at lunch. She talks non-stop, eats non-stop, and can not stop moving. We tend to try and do her schoolwork during this time as she will want to do it all! When she is at a low point she just wants to sit, maybe watch tv, but for the most part just sit. The mean moods are the hardest and usually the ones that bring the tears out in me. I just have to keep telling myself it is the medicine and hopefully by the end of next week it will be through her system.
For those of you who ask what you can do to help us out, there are a few things. First and foremost pray for our family that God gives us the strength to handle what ever lies ahead for us. Pray that we can accept our new situation with a smiling face and and be open to the lessons and the reasons why this is happening to her. Second of all, I know in the future we will need lots of babysitters, lots of help running around gettting Grace to her activities, etc. I WILL call on you who have offered to help....maybe not now but perhaps months from now - I hope the offers still stand. :>) And third, save your pop tabs. The girls' school, Wayne Center, have started a pop tab drive. The pop tabs benefit the Ronald McDonald House @ Riley. We were fortunate enough to be able to sleep there and shower there one night during our stay this past week. It is a wonderful break where you can go to rest, eat, shower, do laundry, etc. It costs around $75 each night to run the house and rooms for parents of inpatients. All they ask is a $10 donation (if you have a sleeping room) if you can pay. They will not turn anyone away. Obviously they rely on donations to fund the rest. Saving pop tabs is soo easy. Each of the classrooms at Wayne Center now have a donation site where you can drop them off on behalf of Mikayla (and I'm sure many other kids who have been at Riley from there) If you don't live close to Kendallville, save them anyways and we will be glad to get them somehow! My aunt is even collecting them from CA. The girls got her started when we were out there this summer.
I have now rambled on enough. Here is to a restful weekend for us. Chris and I may actually get to sleep in our own bed this evening! Yea! Thank you again for keeping us in your thoughts and prayers. - Sasha
Chris and I are just amazed at all the out pouring of friendship and love that so many of you have bestowed upon us. We will never be able to repay or thank you enough for all the gifts, prayers, food, cards, offers of help, etc. As Chris mentioned in his last post, there is a reason that God lead us to Kendallville and now I believe we know why. To think that just 3 years ago we were strangers to so many of you who have become our support that we have clinged to in the past week. So hard to believe that it has only been one week!
As a family we are slowly getting back to "normal" The kids are starting to fight - Mikayla is once again picking on Jacob and he is yelling back. Grace is back to her 7 year old self looking forward to going to birthday parties, dance and basketball. If you have ever called our house you know our answering machine says "We can't come to the phone because the kids are either eating, fighting or sleeping" the same holds true for now. If you call and we don't answer it still is probably one of those reasons (esp. Mikayla and the eating - although it might be Chris & I sleeping while the kids run wild)
The hardest part right now is adjusting to Mikayla's mood swings. I have told people she has 3 of them....high, low, and mean. When she is "high" it is a stitch. Chris and I just smiled and shook our heads today at lunch. She talks non-stop, eats non-stop, and can not stop moving. We tend to try and do her schoolwork during this time as she will want to do it all! When she is at a low point she just wants to sit, maybe watch tv, but for the most part just sit. The mean moods are the hardest and usually the ones that bring the tears out in me. I just have to keep telling myself it is the medicine and hopefully by the end of next week it will be through her system.
For those of you who ask what you can do to help us out, there are a few things. First and foremost pray for our family that God gives us the strength to handle what ever lies ahead for us. Pray that we can accept our new situation with a smiling face and and be open to the lessons and the reasons why this is happening to her. Second of all, I know in the future we will need lots of babysitters, lots of help running around gettting Grace to her activities, etc. I WILL call on you who have offered to help....maybe not now but perhaps months from now - I hope the offers still stand. :>) And third, save your pop tabs. The girls' school, Wayne Center, have started a pop tab drive. The pop tabs benefit the Ronald McDonald House @ Riley. We were fortunate enough to be able to sleep there and shower there one night during our stay this past week. It is a wonderful break where you can go to rest, eat, shower, do laundry, etc. It costs around $75 each night to run the house and rooms for parents of inpatients. All they ask is a $10 donation (if you have a sleeping room) if you can pay. They will not turn anyone away. Obviously they rely on donations to fund the rest. Saving pop tabs is soo easy. Each of the classrooms at Wayne Center now have a donation site where you can drop them off on behalf of Mikayla (and I'm sure many other kids who have been at Riley from there) If you don't live close to Kendallville, save them anyways and we will be glad to get them somehow! My aunt is even collecting them from CA. The girls got her started when we were out there this summer.
I have now rambled on enough. Here is to a restful weekend for us. Chris and I may actually get to sleep in our own bed this evening! Yea! Thank you again for keeping us in your thoughts and prayers. - Sasha
10/26/07 1320
Well not eating but doing a cheer she learned at East Noble cheerleading camp. I am sure that fits into the limited activity the doctor ordered. Anyway to continue with the previous blog, I have been wanting to share two stories from our hospital stay. I am sure people who have never met Mikayla wonder what kind of kid she is. Well to be honest she is very ornery, but she has a heart of gold.
The first story occurred the night after her surgery. We were returning from a follow up CT Scan and xray of her shunt following surgery to find two visitors from church (Pastor Greg and Gabriell -- apologize for any spelling mistakes). Mikayla was groggy, in and out of sleep, with her white turbin wrapped around her head. She would try to answer some questions. Pastor Greg was asking some questions about mikayla's likes and dislikes. He saw a peyton manning card taped to her bed. So he asked who her favorite team was (we all thought we knew the answer). Mikayla took some time and you could see her mind work. Suddenly she yelled out " Da BEARS." Trust me it wasn't the anesthesia, she new exactly what she was saying.
The second story comes on the day we were leaving. She had received many balloons, email and gifts during her ICU stay. We suggested to Mikayla maybe she could give some ballons away, of course she wasn't keen on this. Then we told her about the Amish girl who had been in the autoaccident a couple rooms down (yes the one on I69 , again don't tell hippa). Mikayla then decided to give her a balloon, and added a stuffed lamb she had received from her Mammaw and Grace (grace wasn't so happy to hear this story). The lamb came from Good Shepherd United Methodist Church in Ft Wayne, they are prayed upon by the church and given to people to comfort through difficult times, with the anticipation of keeping or passing along to others in need. Mikayla on her first walk since surgery carried the balloon and animal into the girls room when the girl was off the floor for something and no one was in the room. She never met this girl but could tell she was going to need something to comfort her through her difficult time. This was much more that Sasha or I had expected her to give. She is a good kid, and this is not fair to her, nor any of the other kids that are afflicted with illness or injury. But I think the Lord knows what kids have the stregth to perservere.
Thank you to every one for prayers, emails, gifts, meals, and being there for us, we are truly blessed. Chris
The first story occurred the night after her surgery. We were returning from a follow up CT Scan and xray of her shunt following surgery to find two visitors from church (Pastor Greg and Gabriell -- apologize for any spelling mistakes). Mikayla was groggy, in and out of sleep, with her white turbin wrapped around her head. She would try to answer some questions. Pastor Greg was asking some questions about mikayla's likes and dislikes. He saw a peyton manning card taped to her bed. So he asked who her favorite team was (we all thought we knew the answer). Mikayla took some time and you could see her mind work. Suddenly she yelled out " Da BEARS." Trust me it wasn't the anesthesia, she new exactly what she was saying.
The second story comes on the day we were leaving. She had received many balloons, email and gifts during her ICU stay. We suggested to Mikayla maybe she could give some ballons away, of course she wasn't keen on this. Then we told her about the Amish girl who had been in the autoaccident a couple rooms down (yes the one on I69 , again don't tell hippa). Mikayla then decided to give her a balloon, and added a stuffed lamb she had received from her Mammaw and Grace (grace wasn't so happy to hear this story). The lamb came from Good Shepherd United Methodist Church in Ft Wayne, they are prayed upon by the church and given to people to comfort through difficult times, with the anticipation of keeping or passing along to others in need. Mikayla on her first walk since surgery carried the balloon and animal into the girls room when the girl was off the floor for something and no one was in the room. She never met this girl but could tell she was going to need something to comfort her through her difficult time. This was much more that Sasha or I had expected her to give. She is a good kid, and this is not fair to her, nor any of the other kids that are afflicted with illness or injury. But I think the Lord knows what kids have the stregth to perservere.
Thank you to every one for prayers, emails, gifts, meals, and being there for us, we are truly blessed. Chris
10/26/07 1 pm
We are still trying to find some routine back at home. Still not easy on Grace, especially since the tooth fairy forgot to come last night. Hopefully she will find the way tonight. Mikayla and I slept downstairs again last night. She hasn't needed any pain medication for last 2 days so the vomiting is gone. Occasionally she gets a little nausea. Her balance continues to improve. If she tries to move too fast she stumbles a little bit. We have to be careful with the stairs. The steroids have kept her up, last night I woke up with her standing and staring at me. I got up to find every light down stairs on, the cupboards open (of course she had to eat), she had played with her new playdough and worked on some crafts people have brought. Today she wants to try to go to spend some time at school. Actually she wants to spend the whole day there but we will limit it some with Sasha there. We are going back to Riley outpatient center on Tuesday Morning to meet with the oncologists. Her incisions look good. So you know she has two wounds on the back of her head one about 1.5 inches the the other about 2 inches as a half circle, Fortunately her hair hides it some. She also has an incision on her right abdomen where they pulled the shunt through, it is about 2 -2.5 inches. Her tilting of the head has already improved as well as the headaches with the shunt. Now if we can get the large tumor to shrink. Sasha and I are so amazed by the generiosity everyone has shown. We truly have a great support system of friends and family. Sasha and I were talking on the way home on how God lead us in making the best decision to come to Kendallville 3 years ago. Everyone has been wonderful. Mikayla thinks it is Christmas. We know of the crafts and activity pads and stuffed animals and toys will come in great use over the coming year for trips to riley and to chemotherapy. I am going to check on mikayla ( she might have eaten another meal by now) then I will do another blog on two stories of mikayla in the hospital. Chris
Thursday, October 25, 2007
Chris on 10/25/07
We are home! Mikayla was discharged from Riley yesterday 10/24. We weren't so sure she was coming home as everytime we started to leave she vomited. But we made it home and she hasn't vomited since. Last night was not easy as Grace was reunited with her sister. It is difficult for Grace to understand Mikayla's situation as she thinks since the biopsy everything should be out and everything returns to normal. It also doesn't help that the steroids Mikayla is on seem to play with her emotions and can make seem down right mean at times (especially to Mom). We all tried to sleep in the family room (from one recliner to another). Eventually I made it to my own bed as I think my body finally gave in (I passed out and then vomited myself -- just giving Sasha some extra practice). I feel better this morning. Mikayla has not vomited since we left Riley. But she is eating everything in site. The generosity of our family and friends has made food in overabundance in our house. We will be doing an add for weight watchers when this is all over. Now some good news. The final reading on the pathology came back and indeed it is a low grade astrocytoma. The oncologist called me this morning. He even referred to it as benign. She will still need chemo but at least is not invasive and very slow growing. It has probably been there for quite some time, but no symptoms until it started causing pressure in the brain. The reason we couldn't excise it is because it was too big and in a dangerous location. The doctor told me she was already too smart and too cute to make things worse. So the biopsy and then medical treatment should be much safer and overall better quality of life. I am waiting to hear back from the oncology office for next weeks appointment down at Riley. Now I must go take care of my patient. Chris
Wednesday, October 24, 2007
Chris 10/24/07
Oops I accidentally sent a blank one. Seems everyone is worried if we don't update often, which makes me humbled my the amount of support we received. Last night Mikayla was so tired I think she finally got a little sleep. She wet the bed twice because she couldn't get to the commode fast enough. The other thing in the night is her heart rate stayed low (50's) which she was doing before the surgery. However it can also be a sign of complications, her rest of her neurologic exam has been unchanged, if it does she will need another CT scan. I believe it is probably her normal and should not indicate anything bad. We are waiting for a room on another floor. They need the space in the PICU and obviously need it all over the hospital.
She will probably be able to go soon, if she drinks more should could get her last IV out , we will wait and see. Her big sister is excited about coming tonight. Grace has been and awesome big sister. Of course she doesn't realize all of her favorite cd and dvd are with us here -- don't tell her. Elsie don't be concerned about naming it malignant, I said it was a type of cancer (and still believe it so just slow growing), it was the oncologist who avoided the term cancer. I also meant to use the word metastisis when talking about spreading, so don't worry. If any one wants a name for it use low grade (slow growing) brain tumor (or you can sound very distinguished and say low grade astrocytoma with no metastasis. Every time I walk in and out of the icu I reminded of two things. First anyone can be affected by such a condition or other tragedy, (such as one of the girls from the Amish van wreckage a few doors down -- don't tell Hippa) and second I am so glag we have a strong support system and millions of prayers around the world (from what I am told). The only other thing I think about is going up to a "short coat" (medical student) and telling them maybe they should consider dental school. All for now, I am sure we will send a message later. Chris
She will probably be able to go soon, if she drinks more should could get her last IV out , we will wait and see. Her big sister is excited about coming tonight. Grace has been and awesome big sister. Of course she doesn't realize all of her favorite cd and dvd are with us here -- don't tell her. Elsie don't be concerned about naming it malignant, I said it was a type of cancer (and still believe it so just slow growing), it was the oncologist who avoided the term cancer. I also meant to use the word metastisis when talking about spreading, so don't worry. If any one wants a name for it use low grade (slow growing) brain tumor (or you can sound very distinguished and say low grade astrocytoma with no metastasis. Every time I walk in and out of the icu I reminded of two things. First anyone can be affected by such a condition or other tragedy, (such as one of the girls from the Amish van wreckage a few doors down -- don't tell Hippa) and second I am so glag we have a strong support system and millions of prayers around the world (from what I am told). The only other thing I think about is going up to a "short coat" (medical student) and telling them maybe they should consider dental school. All for now, I am sure we will send a message later. Chris
Tuesday, October 23, 2007
10/23/07
Just a quick note before I go to bed tonight. Today was actually a pretty good day. It is nice knowing an idea of a plan than the unknown. I felt so much better after I spoke with the oncologist. The type of chemo that would be given would be in such low doses that her side effects (losing her hair being the main one) will not be that bad. He said the chemo should really not affect her quality of life, she really wouldn't be that limited in the things that she could do. Except she would have to wear a mask if she were to go to a barn. Darn - as she is my only one who likes the animals and who I think I could convince to show pigs/cows in 4-H! :>)
For those of you who know Mikayla, you know how strong willed she is, how ornery she is, and how raising her so far as been a challenge many of days. But you also know how loving she is and how sweet and that she ALWAYS has a smile on her face. That is probably the biggest thing peope always say about her - she is always smiling! One of our friends commented that now we know why God gave her such a strong spirit and iron will - so that she will be able to get through this with a smile on her face!
Believe it or not, she has only cried once since Friday and that was the day before surgery when she was figuring out what was going on. She has gotten IV's, blood drawn, the IV's out, vomited, gone through 4 hour MRI's and has been such a trooper! Chris & I know that we would not have been able to do those MRI's without being sedated. Of course she got to listen to Hannah Montana during it too. Today she has been really tired and is still on some pain med's so she has been pretty quiet and uncomfortable.
There is some hope that we will be home by the end of the week, with returning for some outpatient appts next week to start the chemo process. We will just have to see....
Our prayers for Mikayla are being answered. We have so much to be thankful for in that the tumor is low grade (or so we are still hoping), she will be able to do chemo as an outpatient in FW, that there is a place like Riley in our state and most importantly that she is really not suffering. No child or parent should have to go through what some of these kids & parents are facing at Riley. As dark as my days have been lately, all I have to do is look one or two doors down and I know someone else is going through the same struggles or worse.
We have been so lifted up by all your emails, responses to this post, the mail that Mikayla has received, the prayers, the words of encouragement that you all have given us. How could we get through this without God's strength? Why this is happening doesn't make much sense at times, but we know that in God's time it will. I truely believe that. Until tomorrow....Sasha
For those of you who know Mikayla, you know how strong willed she is, how ornery she is, and how raising her so far as been a challenge many of days. But you also know how loving she is and how sweet and that she ALWAYS has a smile on her face. That is probably the biggest thing peope always say about her - she is always smiling! One of our friends commented that now we know why God gave her such a strong spirit and iron will - so that she will be able to get through this with a smile on her face!
Believe it or not, she has only cried once since Friday and that was the day before surgery when she was figuring out what was going on. She has gotten IV's, blood drawn, the IV's out, vomited, gone through 4 hour MRI's and has been such a trooper! Chris & I know that we would not have been able to do those MRI's without being sedated. Of course she got to listen to Hannah Montana during it too. Today she has been really tired and is still on some pain med's so she has been pretty quiet and uncomfortable.
There is some hope that we will be home by the end of the week, with returning for some outpatient appts next week to start the chemo process. We will just have to see....
Our prayers for Mikayla are being answered. We have so much to be thankful for in that the tumor is low grade (or so we are still hoping), she will be able to do chemo as an outpatient in FW, that there is a place like Riley in our state and most importantly that she is really not suffering. No child or parent should have to go through what some of these kids & parents are facing at Riley. As dark as my days have been lately, all I have to do is look one or two doors down and I know someone else is going through the same struggles or worse.
We have been so lifted up by all your emails, responses to this post, the mail that Mikayla has received, the prayers, the words of encouragement that you all have given us. How could we get through this without God's strength? Why this is happening doesn't make much sense at times, but we know that in God's time it will. I truely believe that. Until tomorrow....Sasha
10/23/07 1150
Hello all! I will try my hand at posting a blog, hopefully I won't mess it up. One correction from a 2 blogs ago. The tumor is not considered malignant. It has not spread to any other spots. The MRI of her entire spine was negative and tumors arising in the brain essentially never spread to sites outside the brain and spinal cord. I think what Elsie meant by malignant was that it is a type of cancer. Essentially when these cells grow abnormally they can be low grade (slow growing and less aggressive) or high grade (rapidly growing and more aggressive). Mikayla's is fortunately low grade. Now the oncologist we spoke with today feels low grade could be considered more closer to benign rather than a true cancer. I think it is all in how you look at. Benign or cancereous or malignant the mass itself is what caused all her problems. This morning she is in more pain, and needing pain medicines. The medicine makes her stomach upset so she is not eating the best. The plan is to move her out of the ICU today if a bed on a regular unit is available. Last night was good for neither Mikayla or myself as she couldn't get comfortable, she vomited, and she would not let me watch the first half of the colts game. I did get about 2 hours of sleep at the Ronald McDonald house after Sasha came back this morning. Sasha was able to talk with the oncologist this morning. He feels there is about 75 % of these tumors will respond to chemotherapy that would go on about 70 weeks (yes over a year) in cycles. Those who fail to respond (either it fails to shrink or starts increasing in size) will require radiation treatment in Bloomington, IN. The chemo would probably start in the next couple weeks at Riley then transition to Lutheran's Pediatric Clinic in Ft Wayne. Sasha or myself will let you all know more when there is more definitive plans.
Even though I am a doctor and have to rely on science based medicine, I truly have faith in our God and know that all of your prayers will get Mikayla through this. They have already carried us through the first stage. Please prayer for Grace and Jacob, Sasha as well. To all my doctor friends, I have told many people they have cancer and helped them through it , but I never dreamed I would diagnose my own child. Take the time to hug your kids and don't sweat the small things (even if they seem so big at the time).
Chris
Even though I am a doctor and have to rely on science based medicine, I truly have faith in our God and know that all of your prayers will get Mikayla through this. They have already carried us through the first stage. Please prayer for Grace and Jacob, Sasha as well. To all my doctor friends, I have told many people they have cancer and helped them through it , but I never dreamed I would diagnose my own child. Take the time to hug your kids and don't sweat the small things (even if they seem so big at the time).
Chris
10/23/07
Chris found a wonderful article on the website below. Please beware though that there are things on there that are not for the faint of heart. After skimming through it myself there are things about treatment and time frames that I do not even want to think about. So please don't worry as I can't force myself to think of these things either. But it does do a good job of explaining the type of tumor she has and some of the medical terms that the doctors will be using. Here is the website: Remember she has a low grade astrocytoma.
Brain Tumors Brain tumors are the second most common group of childhood cancers, affecting approximately 2,300 kids each year. Treatment requires a very specialized plan involving a team of medical specialists. To read more, go to http://www.kidshealth.org/PageManager.jsp?cat_id=135&article_set=55802&lic=44.
My mom did a good job of explaining things last night. I know all of you were anxious for a post but I just did not have it in me and it was so late by the time we got her all settled and in for the evening. I have been checking email and am so overwhelmed by all of you who have sent prayers and offer of help. Thank you are such simple words, but yet I do not know what else to say....i know many of you want to know what you can do to help and quite honestly at this point I do not know. We have the kids taken care of through this weekend, but don't feel bad if I have not called on you yet - we have a long road and I will be using all of your offers of help at some point or another!
A good friend of mine who I talked with last night late told me she thought I was in shock and that pretty much sums it up. Thursday am I was yelling at Mikayla to hurry up and get her shoes on or she would miss the bus and 30 hours later we were headed down to riley talking with nerosurgeons about brain surgery! I am so blessed to have Chris as a husband. Without him I would be even more of a wreck at times than I am. I know his knowledge of everything medical is perhaps a disadvantage for him now, but it is such a comfort to me and our family that if we don't understand something we can turn to him for explanation. It is next to impossible for him though to turn off his "doctor" brain and just be a dad. He knows all the stuff that I don't want to think about. Please just pray for him that he can be a dad most of the time and pray for strength for both of us that we can hold it together and show a brave face with Mikayla and when we see Grace & Jacob.
Oh by the way I was able to stay at the Ronald Mcdonald house last night. I was able to get a few hours of sleep in a regular bed without hearing all the beeps and noises of a hospital. SAVE THOSE POP TABS as it is such a retreat if there is such a place here.
Ok enough about us...Dr. Boaz (neurosurgeon) talked with us again last night, showed us the pictures (x-rays, CT, MRI) and seemed pleased. In fact he is even hoping we can come home in few days before we start phase II - whatever that may be as at this point I have no idea. That would be wonderful, but I don't want to get my hopes up. Mikayla is such a trooper, from looking at the x-rays and seeing what all the pressure was causing in her head, I can't believe how bad her headaches must have been. She hardley ever complained! She still has her same spirit about her. She just woke up so I will finish this post later. sorry it was so long! - sasha
Brain Tumors Brain tumors are the second most common group of childhood cancers, affecting approximately 2,300 kids each year. Treatment requires a very specialized plan involving a team of medical specialists. To read more, go to http://www.kidshealth.org/PageManager.jsp?cat_id=135&article_set=55802&lic=44.
My mom did a good job of explaining things last night. I know all of you were anxious for a post but I just did not have it in me and it was so late by the time we got her all settled and in for the evening. I have been checking email and am so overwhelmed by all of you who have sent prayers and offer of help. Thank you are such simple words, but yet I do not know what else to say....i know many of you want to know what you can do to help and quite honestly at this point I do not know. We have the kids taken care of through this weekend, but don't feel bad if I have not called on you yet - we have a long road and I will be using all of your offers of help at some point or another!
A good friend of mine who I talked with last night late told me she thought I was in shock and that pretty much sums it up. Thursday am I was yelling at Mikayla to hurry up and get her shoes on or she would miss the bus and 30 hours later we were headed down to riley talking with nerosurgeons about brain surgery! I am so blessed to have Chris as a husband. Without him I would be even more of a wreck at times than I am. I know his knowledge of everything medical is perhaps a disadvantage for him now, but it is such a comfort to me and our family that if we don't understand something we can turn to him for explanation. It is next to impossible for him though to turn off his "doctor" brain and just be a dad. He knows all the stuff that I don't want to think about. Please just pray for him that he can be a dad most of the time and pray for strength for both of us that we can hold it together and show a brave face with Mikayla and when we see Grace & Jacob.
Oh by the way I was able to stay at the Ronald Mcdonald house last night. I was able to get a few hours of sleep in a regular bed without hearing all the beeps and noises of a hospital. SAVE THOSE POP TABS as it is such a retreat if there is such a place here.
Ok enough about us...Dr. Boaz (neurosurgeon) talked with us again last night, showed us the pictures (x-rays, CT, MRI) and seemed pleased. In fact he is even hoping we can come home in few days before we start phase II - whatever that may be as at this point I have no idea. That would be wonderful, but I don't want to get my hopes up. Mikayla is such a trooper, from looking at the x-rays and seeing what all the pressure was causing in her head, I can't believe how bad her headaches must have been. She hardley ever complained! She still has her same spirit about her. She just woke up so I will finish this post later. sorry it was so long! - sasha
Monday, October 22, 2007
Monday October 22, 2007 11:00 p.m.
This is Grandma Wygant posting tonight for Chris and Sasha. We four grandparents traveled together today to be with Chris, Sasha, and Mikayla. Mikayla left for surgery around 9:00 a.m. and went to the recovery room around 3:00 p.m. The Doctor had a change of plans for surgery. He decided to perform a biopsy and insert a shunt rather than attempt to remove the tumor today. He reported to us that the tumor is malignant, however it is slow growing which is a positive. It is called astrocytcoma, it is an abnormal cell that has been growing. After the biopsy, the shunt was inserted, which will be permanent. It will release the pressure which has caused the headaches and vomiting. It will take 4-5 days for the official reports to be returned from the biopsy, but normally the first observation is usually correct. The doctors will study the reports and proceed with a plan of action, options could include, chemo, radiation, surgery. This type of tumor does not spread to other parts of the body which is another positive. The doctor said that he was cautiously optimistic and if he is ,we are too..... We were able to see her for just a moment as she was being taken for another CT scan (to check for bleeding etc.) after she had returned from recovery. She was so precious lying on that bed with her cap covering most of her head, and clutching one of her favorite blankets. It is heartbreaking, any one of us would trade places with her in a heartbeat. We left her in good hands, her Daddy will sit by her side tonight, and Sasha is not far away. Thanks for your prayers, love, and caring for all of our family.
10/22/07 4am
I couldn't sleep so i was checking email (they have a nice computer in the parents lounge) and thank you to my brother-in-law Keith who pointed me to the Riley website. People can send an email or postcard to Mikayla and they will hand deliever them to the patient everyday.
Go to http://www.rileyhospital.org
and click on either "send a patient an email link" or "send an online postcard"
right now she is in the PICU room 4819 (not sure if you need that info, but it couldn't hurt)
'til tomorrow (or rather today) Sasha
Go to http://www.rileyhospital.org
and click on either "send a patient an email link" or "send an online postcard"
right now she is in the PICU room 4819 (not sure if you need that info, but it couldn't hurt)
'til tomorrow (or rather today) Sasha
Sunday, October 21, 2007
10/21/07
Forgive me because I can't remember what I have said or mom has said so I will just probably repeat myself....Mikayla is such a trooper. All the nurses just love her. They find her whatever she wants, have made her pictures, and even pop in to say hello even though they are not taking care of her per say. She is so inquisitive and has asked everyone anything that pops into her head. She asked the cleaning lady today is she was married, had any kids, pets, or furniture. She is also scared....she told the dr. that she doesn't want her head cut open. I pretty much lost it on that....
This morning the surgery plans were to go in and try to take as much out as possible, this afternoon that changed. Dr. wants to put in a "shunt" that will be a permanent fixture (all internal so we will never see anything except a scar) to help get the fluid draining right again. This should help with all the symptoms we were seeing, headaches, vomiting, head tilt, etc. Then he wants to biopsy the tumor to determine the best course of action after that. That is all I know. having a hard time looking towards the future...we just want to get through tomorrow. we have no idea when we will be home. best case would be later this week with returning after the biopsy results for further things. Worst case would be weeks, months???
We can't thank you all enough for all your prayers and help with the kids, etc. I only thought this sort of thing happened on tv or to "other people." Chris & I are pretty much on autopiolt right now. part of me is still in denial - i keep thinking that a dr. is going to come in and say "Oh we were wrong - you can go home." But we also know that we are in the absolute best place we can possibly be right now. We have only been here 3 days and Riley is wonderful!! I will try to update tomorrow after surgery. Feel free to pass this website along to anyone as I'm sure I missed people. - Sasha
This morning the surgery plans were to go in and try to take as much out as possible, this afternoon that changed. Dr. wants to put in a "shunt" that will be a permanent fixture (all internal so we will never see anything except a scar) to help get the fluid draining right again. This should help with all the symptoms we were seeing, headaches, vomiting, head tilt, etc. Then he wants to biopsy the tumor to determine the best course of action after that. That is all I know. having a hard time looking towards the future...we just want to get through tomorrow. we have no idea when we will be home. best case would be later this week with returning after the biopsy results for further things. Worst case would be weeks, months???
We can't thank you all enough for all your prayers and help with the kids, etc. I only thought this sort of thing happened on tv or to "other people." Chris & I are pretty much on autopiolt right now. part of me is still in denial - i keep thinking that a dr. is going to come in and say "Oh we were wrong - you can go home." But we also know that we are in the absolute best place we can possibly be right now. We have only been here 3 days and Riley is wonderful!! I will try to update tomorrow after surgery. Feel free to pass this website along to anyone as I'm sure I missed people. - Sasha
Address for cards
Hi, this is Sasha. Not much time to write as I need to get back to the room, but wanted to give you all an address where Mikayla can get mail. Send to:
Mikayla Frazier
Riley Hospital for Children
4th floor PICU North Room #4819
702 Barnhill Drive
Indianapolis, IN 46202-5235
things changed a little from this am. She is having surgery tomorrow, but not as extensive. Dr. decided to biopsy first and see what we are dealing with rather than try to remove the entire tumor (or as much as can be taken.)
will try to write more tonight when she is asleep - need to go back to the room. Thanks so much for everything - i know the prayers are helping! - Sasha
Mikayla Frazier
Riley Hospital for Children
4th floor PICU North Room #4819
702 Barnhill Drive
Indianapolis, IN 46202-5235
things changed a little from this am. She is having surgery tomorrow, but not as extensive. Dr. decided to biopsy first and see what we are dealing with rather than try to remove the entire tumor (or as much as can be taken.)
will try to write more tonight when she is asleep - need to go back to the room. Thanks so much for everything - i know the prayers are helping! - Sasha
Sunday October 21, 2007 12:30 p.m.
Sasha called this morning to tell us that surgery is scheduled for tomorrow morning, Monday the 22nd at 9:00 a.m. it will be a 6 hour procedure. A shunt will be put in place and the doctor will remove as much of the tumor as she can. She only had limited time to talk, so that is all that I know to share at this time. I will update as I receive more news. We so appreciate your continued support. Blessings, Elsie
Saturday, October 20, 2007
Saturday October 20, 2007 9:30 p.m.
Hi, We are Mikayla's grandparents, Butch and Elsie Wygant. I am setting up this web site for Chris and Sasha as a convenient way to reach many of their friends and family. Some of you know the events of the past two days and many do not. Chris sent an e-mail this afternoon ,so to some it will be a repeat. He explains everything better than I, but I will do my best. Mikayla, their 5 year old, second daughter, has been having headaches off and on the last 2 months, and has tilted her head slightly to the right. She has vomited 3 times this past week so Chris ordered a CT scan for yesterday the 19th at the Kendallville hospital, they then had an MRI at Lutheran Hospital, from there they went directly to Riley Children's Hospital in Indianapolis. Today she had 3 MRI tests, (4 hours), She has a 3.2 cm tumor at the back section of her brain. (about the size of a golf ball) They met with neurosurgeons last night and the surgeons will determine what plan of action they will take, hopefully they will talk to Chris and Sasha yet tonight or early tomorrow. At this time she is being prepared for surgery on Monday . As we visited with her today, she was her usual bright and cheery self, very inquisitive, she wants all the details of what the nurses and doctors are doing, and what each procedure means. We feel that her strong willed personality will be a positive throughout these next days and months. She has a way of charming everyone in her presence and can put a smile on our face even in the midst of our sadness. At this time we are asking for prayer support , we trust that the tumor can be removed successfully and that it not be malignant. We ask for calmness and guidance for Chris and Sasha and their family. Grace and Jacob are currently with Chris's parents, Bill and Marcia. Grace (7 yrs) is having a difficult time. It's hard to believe I am even writing this, but many have faced this challenge, as we witnessed today at Riley. With our continued faith and God's grace we will continue through this difficult time. Either Sasha, Chris or I will continue with updates. Thanks for caring and your prayers. Elsie and Butch
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