Back to school

Mia went back to school today. 
She had a nice surprise from her best friend Gwen. Gwen got Mia some craft things and made her a card which she had gotten lots of kids and teachers to sign!
All in all her first day back went pretty well.
On a side note. ..
When I went to the school the other day too get some of Mia's homework, I got the nicest compliment about Mia from her math teacher. She said "Mia handles all of this with such grace and  no matter what she may be dealing with, she always has a smile on her face."
What a great thing to hear about your child. Mia never ceases to amaze us. She illustrates bravery, perseverance and strength that rival most adults. She has shown us that a bright smile can be contagious and can make even the worst of days feel wonderful.
We have to be thankful for our struggles because without them we will never find our strengths.....
So thanks to our little Mia for teaching us all to choose joy and find the rainbows in the rain, no matter what our situation may be! Here we think we teach our children and then we realize they are the ones teaching us.
We love you Mia

Snow day

Mia had a rough evening last night with quite a bit of pain. After some advil, her ice pack and a good night's sleep she was feeling better this morning.  She still has a little discomfort, swelling and bruising today. 
Mia still wanted to get out and play in this beautiful white snow we have,  so we all played outside for a little while.  Now we are snuggled on the couch watching The Santa Clause and having popcorn!

Recovering

Mia is a little more swollen and a little bruised today. Her, Addy, Bella and Mariah helped my mom to decorate her christmas tree today.  Mia is napping right now when she wakes up we are going to decorate our Christmas tree! 

Getting closer to home

Mia has had some pressure and discomfort today from the swelling she has on her cheek and eye area. We are about 2-3 hours from home.  We are all anxious to get home and relax this weekend!

Headed home

The eye dr said that Mia's eye looked good at her appointment the morning.  So... we packed our stuff, checked out of the hotel and got on the road about 10:30 Ohio time.  We just stopped at Cracker Barrel for some breakfast....then we will be back on the road to home!

Morning

Mia is feeling really really sick to her stomach this morning.  I helped her take a shower and to get dressed. ..now it's off to the eye dr...

Resting at the hotel

We got back to our hotel from surgery at around 2 or 230. We all had some food and a nice little nap. Mia is hungry for some diner now,  so we are working on that.  Sorry we didn't get this updated earlier,  I think we were all so hungry and exhausted that we filled or tummys and passed out.

Getting IV out

Getting her IV out and then ready to go back to the hotel for some food and rest.

Sleepy Mia

We finally got to see our Mia!! Rich is working on a post with surgery details.

The surgery

This is our first visit to Nationwide children's hospital in Columbus, ohio. After working with other Dr's in UW Madison who were unwilling to address Mia's pain and discomfort she had been dealing with for the past 18 months, we had enough and needed to do more.

We had been in touch with Dr Murakami during that time discussing the mri results, her medical history and current medical care. He felt he would be able to help address Mia's pain.

Prior to surgery this morning, Mia told him what areas she had regular pain and pointed to each spot; cheek, forehead and below her eyebrow. He commented on how those area's are all tied together and that would fit exactly with her symptoms. She also told him about her mouth hurting, however since he could not visibly see any spots, he felt better to leave that alone for now.

The Dr came out after he finished with Mia's surgery to explain how everything went. As mia told him in the morning, he saw exactly the areas she was feeling pain and injected them with bleomycin. This is what she has had before but the he used a different chemical to mix it with to minimize any swelling. Bleomycin is a chemo medication that, when used in small dosages, can treat these malformations with good success.

He did confirm that the malformation is in her skull but felt that he did not need to be addressed today.

The next steps is to call him after 10-12 weeks to check on how Mia's pain is doing. It may take a few more treatments but the main thing is to keep monitoring it instead of waiting. Especially during the next 3-5 years as Mia goes thru puberty.

We also have another check-up with the eye Dr tomorrow morning to ensure any swelling will not put pressure on her optic nerve causing further vision problems.

Recovery room

The Dr just spoke with us and Mia is going to recovery.  We should get to see her shortly. We will update later with details

In surgery

Mia went in surgery about 10 mins ago

Waiting for surgery. ...

Mia is changed into her hospital cloths and we are waiting to talk to the Surgeon.  Ironically it was exactly 8 year ago today we were in Milwaukee WI for Mia's first surgery. Mia is relieved because the anesthesiologist just came in and Mia will get to be put to slept with gas prior to the putting in her IV. Surgery is scheduled to start at 8 am Ohio time. 

At children's

We arrived at the hospital at 6:30 Columbus time ...5:30 our time and are getting all checked in now. 

At last we are in Columbus

We left home yesterday afternoon we were pretty tired and ended up stopping to spend the night in Indianapolis. We drove the rest of the way this morning and arrived here in Columbus at around  1:45. We have been at Mia's eye dr apt since then.  We have not yet seen the eye Dr ....hopefully we will be seeing him soon.  Then we will head to our hotel to check in and then find somewhere fun to take Mia and let her choose where she would like to have diner.  We will update later with more info. 

Eye Apt. / MRI

     About three weeks ago Mia got off the bus after school with tears in her eyes.  She told me that all day she had been struggling to see, even with her glasses on. Mia had her last eye check up about 2 months earlier and at that time her vision had been stable for the last couole of years. We called the eye dr, but even with our concerns of urgency the soonest they were able to get Mia in was May 18th.
      During those long three weeks of waiting Mia's vision remained poor. Mia has also been experiencing quite a bit of pain alongside her changes in vision. She's had both bad days with stronger more frequent bouts of pain and those few days which we are incredibly thankful for when Mia would have little to no pain.
       Two days ago we finally got to see the eye dr, her eye exam confirmed that indeed Mia's vision had gotten worse. There was a not so expected finding at the eye dr as well, her left eye had gotten worse (in the past her left eye hasn't really been bad at all).
     The eye dr faxed a report of the eye exam to the VAC (vascular anomalies clinic) at UW Madison where Mia is seen.  Later that day we received a call from a nurse at the VAC that said the Neuro surgeon would like Mia to have another MRI STAT (as soon as possible).
      Which brings is to today.  Mia and I (Brandy) arrived at the hospital at 9 am. A nurse placed Mias IV around 9:30, the IV is for contrast during her MRI. Mia was a Champ as usual getting her IV put in,  she put her headphones on and listened to her music. Mia uses music to relax quite often,  she uses it to help her relax during times of pain and discomfort.  Mia stays awake for her MRI'S now, so she was a little nervous about that this morning,  wondering how long it would take etc. 
Mia went into the MRI room at 10. The nurse said it will probably take 1 to 1 1/2 hours.
      We are all overly anxious to know what the MRI shows.  I'm hoping that we will get to hear something today,  but it will probably be next week before we hear the results. 
We will update more when we get any information.

Recovery

Tomorrow will be a week since Mia's surgery.  It's been a long week for our Mia.  She stayed home from school last Friday and Monday.  Tuesday she went to school,  but had a rough day and was in tears from the pain by the time she got home. Today she woke up showered and got ready for school but was in a lot of pain and wasn't able to go to school. This afternoon her pain got more intense and she asked me to look on her mouth and see how it looked.  I noticed a few spots where it was bleeding.  She ended up taking a little pain medication but it did not relieve the pain. It has continued to bleed through this evening.  Mia was hungry and tried to have something to eat,  but ended up curled up on the couch crying.  Our poor baby I so wish she didn't have to go through all of this. After a good cry on the couch and some advil our Mia was able to have a few bites of ice cream.  If you know Mia you know ice cream makes everything better!  We are hoping she can get done rest tonight and that it looks betterin the morning but if not we will be calling the doctor

Home sweet Home

We are all happy to be home! It's been a long day for all of us. We are hoping our night goes smoothly and will update again in the morning.

Recovery

Mia is in recovery.

In surgery

Mia is in surgery, 

Headed to the hospital

We left home at around 6:15 this morning,  dropped off Noah and Addy with momo & papa.
Mia has had another rough week,  she hit her head (right side of her forehead) on Monday at school.  This is worrisome because any trama to her malformation can cause it to grow.  She has a couple small superficial cuts,  its red, swollen and painful.  Tuesday evening it hurt her quite a bit, she actually fell asleep with an ice pack on her head.  Wednesday morning she woke up crying with pain. Mia insisted she was still going to go to school,  so she held ice on her head until the bus came and made it the whole day at school.
Her mouth has still been bothering her quite a bit too,  we are hoping one she heels from today's surgery she can get some temporary relief at least in her mouth. 
The hardest thing right now is that Mia is starting to go through puberty which can cause these Venous/ lynphatic malformations to grow at a rapid rate. Needless to say the last year of Mia being in pain is just the beginning of a long road.
We will update again once Mia goes into surgery. 

Pain & next surgery

The past few months Mia has been having flare ups in her mouth. She stayed home from school all of last week. The spots were inflamed, painful and bleeding. We were able to get an appointment at UW on Friday in the anomalies clinic to see a plastic surgeon, neuro surgeon and ENT to see what our options are. We found out that these spots are not just on the surface. From the last MRI they could see that the malformation is not just superficial, its growing above the roof of her mouth. They compared it to an ice burg in the sense you only see the tip, not what sits below.

The first step we will be taking is a laser surgery that will give temporary relief, healing the bleeding lesions. Once that has healed, they will discuss doing injections to shrink the malformations like they have done in her forehead and cheek. However this has some risks due to the nerves and arteries that run thru the the roof of the mouth.

Surgery is setup for Thursday, just not sure of the time yet. Probably the afternoon and will require an overnight stay. We will post the time once they we have it.

MRI results

We met with the doctors to go over the results of the MRI scan. It was a good news bad news situation... the chemo meds she had been taking for the past 5~6 months did not make any changes (bad news). Because of that, she is no longer taking those meds and going thru all the side effects associated with it (good news).

So with most the other meetings we've had with the doctors, they are not sure what to do next. They offered two initial ideas;
1. Steroids -
Mia would take them for a week then off for a while. This way the side effects could be minimized and might not have long term effects vs being on them all the time.
2. Radiation -
Mia could undergo radiation treatments in the areas that are causing the most pain. This however has its own set of side effects, not sure they will out weight the good.

MRI

Mia has had some ups and downs the past few weeks. Prior to this week, Mia made it two full weeks at school with minor pain. This was this first time this school year she went an entire week, let alone two weeks. That all ended when Mia got sick and had major pain over the weekend. Her pain would come on quickly and would bring Mia to tears, instantly. This was a first that she has had any pain with such intense symptoms. She had to stay home Monday - Wednesday and went was able to go back Thursday, however she had an eye Dr appointment so it was a short day of school.

Today we are at UW for her 6 month MRI then we meet with the Dr to review the scans. This will hopefully show what effect the chemo med has had.

Long weekend

It's been a long weekend. Starting with the ER trip Thursday night / Friday morning. They never did figure out what was causing Mia to get the high fever or abdominal pain. All the Dr's guessed it must be something viral and there is nothing they can do or give her. Best thing we can do for Mia is keep an eye on her temperature, which got up over 102° of and on Friday into Saturday. Switching between Tylenol and advil was the only thing to help give her some relief.
Then came Sunday, finally. .. a good day. Mia woke up after 7 and had her happy smile back. Such a relief after the close monitoring and wondering what was going to happen next. It was a relaxing day of Lego's, rumikub and Yahtzee. Hopefully Mia will continue feeling better tonight, get some good sleep and be ready for school Monday.

Home

We just got home. .. they did a full workup, x-ray, CT scan, blood work. .. they didn't find anything pointing to what caused the high fever. Xray of Mia's chest showed a possible slight start of phenomena but ruled it out. No real answer on what happened but good news that her white blood cell count was normal and her body was trying to fight off whatever it was.  They did give her some antibiotics before we left so hopefully that and some sleep will help Mia.

Sweet dreams princess, we love you.

CT scan

Mia just came back from he CT scan. Really hoping they see something. So frustrating when our little girl is in pain but there is nothing they can do, maybe this time will be different. At least her fever the has come down but it's been up and down all night. The Dr said he would be in shortly with some results. ..

ER visit

I wish I had better news to update everyone with. Today during gym, they were playing dodge ball and Mia got hit in the stomach. She went to the nurse and then called Brandy to pick her up. Once they got home she started to feel weak. Then Mia started to get a fever at which point we call her chemo medicine Dr.

So here we are again. They are checking her over and getting her prepped for a CT scan in a couple hours. For now we wait.

Follow up & back to school

Yesterday Mia went to her follow up from her appendix surgery. The doctor said that everything looks good and seems to be healing well. We did ask the question about weather or not the chemo medication had caused the appendix situation ?? The answer the doctor gave us was as we had suspected  ,,,there really is no way to tell if the med was or wasnt the reason this happened with her appendix .
The oncologist also called and said that we could re start the chemo meds . We are so torn on this ,,it's such a difficult decision to make. Do we give her the meds and risk another possible infection of some kind ?? Or do we not and give up our hope for finding something that could possibly help with her LM???  Rich and I have decided to have her continue taking the med (as long as there are no further complications ) for the next 2 months . At that time March 11 Mia is scheduled for another MRI at UW and a followup with her oncologist to see if the med is doing anything to help ?
Mia did go to school today and had a pretty good day .
We are so very greatful that mia has came through this so well now all we can do is stay positive and give it to God !!!

Suprise

Mia just got a visit from her principal and one of her teachers Mr. Protz . It is truely amazing the thoughtfulness and care shown by all of the staff and students at the school.The principal had even called us to check on mia the day we came home from the hospital. On Wednesday the school nurse called to check on her , Mia & the nurse have become quite close this year as Mia has been going through this tough time. It is a blessing to know that she is there for Mia. They brought mia all of these wonderful treats and a card signed by her classmates and teachers. There really aren't words to express our graditude for everything. ...thank you and this support and knowing everyone cares for oir little Mia helps so much in keeping not only Mia but mom & dad stong as well . I did get a call from the Oncologist today and have to call her back and will update on that later today.  

Smoothie

Mia woke me up and 5am this morning with a little pain ,she took some meds and went back to sleep till around 8. She woke up feeling a little better and we just made some strawberry ,banana  & yougart smoothies of course mia had to add some whip cream to hers ...lol

Recovery

Mia is still having some pain from her surgery and then last night and today she has complained of pain in her right eye (where she has the lymphatic malformation ) . She is doing a little better each day and everyone's love & support are the best medication she could get.  Mia got a very nice suprise visit from her best friend Gwen tonight , thanks again to Kristen Gwen's mom and  her sisters for coming too !! It was so sweet they brought mia a gift and some beautiful flowers too.
Thanks to everyone who has been checking in on Mia it means so much to her to know that everyone cares so much.  Her surgical follow up is scheduled for next Monday afternoon and then hopefully she will be back to school on Tuesday .
Addy update : surgery scheduled for next Friday January 15th at UW Family Children's Hospital.

Home ....

We have been home for a few hours now . The car ride and getting into the house were a little rough so she had some pain this afternoon. She had legos from auntie Tammy and MoMo Norton when she got home so that made her happy. She stared at the boxes for quite awhile , then after a dose of pain meds this afternoon her and mommy started to put one of them together. The oncologist called me this morning to check on mia and said we are going to stop her chemotherapy medication. Which is both a blessing and a curse . The chemo med was very scary but was also basically our only shot for a possible treatment for where her LM is growing in the bones of her skull. The surgeon in Ohio at Nationwide did say if the chemo med didn't work that he would attempt to inject the areas but he has only done it like 1 other time and it didn't really help anything .
On a side note we had to take Addison for her follow up this morning with her ENT from UW . We found out she does have some cysts growing back in her  ear again and she will be having surgery at UW sometime in January . For Those of you that didn't know Addy lost her hearing in her right ear last spring due to a cholestoma cyst they found that had grown so large it had almost reached her brain ,, so everything in her ear was removed . The surgeons hope is that once she removes the new cysts that she's going to attempt to rebuild Addison's ear so that she may regain some of her hearing.
We are all looking forward to sleeping at home tonight!!
Thanks everyone for all of your love and support !

GoFundMe account created

We would love it if you took a moment to check out Mia's GoFundMe campaign:

http://e.gofund.me/ourprincessmia

Your support would mean a lot to us. Thank you so much!

Coming home

She didn't sleep to good last night so she is a bit tired today. It's been a long weekend and Mia got the all clear to go home.

Hopefully once we get home, she will be more comfortable and will get some sleep.

Post-op

   Rough morning. ..Mia was having quite a bit of pain when she woke up this morning she had went too long through the night with no pain meds They were going to give her morphine through the IV to help get her pain under control  but the IV was bad and this was already her 2nd IV. They took the IV out and gave her a pain pill instead which seemed to help her. She's been up walking a couple times but said she didn't realize how much you use your stomach muscles . She got to have some vanilla ice cream which she loved.  Busha, Julie ,Ian, MoMo Svedin , Addison , Aunt Nikki, Bella,Mariah, Aunt Britt and Keegan all came to visit her which made Mia Happy. Once they left she started to have some pain again and laid down in bed ,she has been sleeping since then. ..and Daddy is asleep too !!   We were hoping to possibly go home tonight but I think it may be tomorrow before we get to go . Will update more later . Thanks to everyone for all of your prayers, love and support ..we are blessed to have you all !!

Recovery

We met with the Dr who preformed the surgery. It was indeed acute appendicitis. Everything went well, she'll be in recovery for about an hour.

In surgery

They finally took her back into surgery. Should be about an hour till we get to see Mia without an appendix.

This is her selfie!

Surgery - appendix

We just finished talking to a surgeon. .. after hearing about her symptoms for the past days, the problems Mia had this morning and after viewing the CT scans, they determined she needs her appendix removed.
Once they find a time in the OR schedule they will start prepping Mia. He said it should take an hour and it will be laparoscopic. Due to the medication she has be taking, they want to keep her an extra day to give her more antibiotics and keep a close eye on her.

Mia is pretty upset this time. She just wants to come home. She is sad that we've spent all day in the ER. We are trying to keep her calm, reassure her that she will be ok and that we are not leaving her. Once we get more information, well be sure to get it posted.

Thanks to everyone's love and support for our princess Mia.

ER

Well miss Mia has been feeling a little sick and weak over the last few days.  She woke us up this morning saying that she just didn't feel right . She felt very weak and threw up a couple of times , then started to run a fever. We called her oncologist at UW who told us to take Mia to an ER in Rochford.  Once we arrived here the Dr from UW had already spoke with the ER Dr here and given orders for mia. We have been here since a little before noon . She is in a room the drew 3 large tubes of blood , started an IV and giving her IV fluids.  The ER Dr came in and saw mia and checked in over . He felt her stomach and is concerned something may be going on with her appendix so she is drinking some cocktail now to prep her for a CT. The nurse also just drew more blood for a test they need to send out to another lab because they cannot do the test here,  but those results won't be back for uo to 24 hours. They are also monitoring her heart rate and blood pressure as her heart rate has been high like 140's-150 since we arrived . We will update as we find out more ....

Merry Christmas & Happy New Year 2016

We hope everyone had a Merry Christmas and happy new year. .. welcome 2016. Mia had a very good Christmas this year. She got alot of Lego's this year and has already put them all together.

New years eve was relaxing night of card playing, snacking and watching the ball drop. Looking forward to the new year.

We would also like to thank a special angel who's letter & gift truly brightened our holiday spirits.