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
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