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

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

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

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

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

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

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