Mia Remembered

Mia Remembered 3
Spring 2010

I am still amazed at how many lives our Mia has touched.  The Make-A-Wish Foundation named a star after Mia in the International Star Registry. When we spent a day last year at the Adler Planetarium in Chicago, they were so kind and gracious and gave us a private viewing in the “star” room and showed us where her star was.  They spent extra time so we would really know how to find it and they also took special care of Andrew and let him work some of the controls.  For you star gazers out there, her star is next to Vega of the summer triangle and you can see it on a clear night.  It is in the Lyra constellation (Lyra RA18h 43m 1s D 38o 15’).

A friend who runs a cosmetology school named her nail department “The Edge” after Mia.  We used to take Mia there sometimes to get her nails done.  I have to try not to cry whenever I go in there and she tells all the girls that I am Mia’s mom!  They have “The Edge” printed on their shirts with angel wings so patients can see it when they go to hospitals to do the kids’ nails. You can even google Mia Edge and find several sites and the beautiful video from people we don’t even know.  As for Mia’s foundation, perhaps we (or a very nice friend) will eventually set something up and gather interest on Facebook (once I learn how to use the darn thing).

Even though I know that people mean their best, it is still hard to say the words, “We lost our daughter.”  It is like a knife in the heart.  When I see former patients and they ask how she is doing, I have to say the words.  When I meet new people and they ask me how many kids I have, I try to avoid saying the words by saying instead, “Our son Andrew is eight.”  I don’t want to avoid acknowledging her though, so the words usually come out at some point.  I do know that people feel for us and I so appreciate that.

Sometimes when I am at the craft store getting flowers, someone will come up to me and comment on the beautiful arrangement.  I thank them for their kindness because how could they know they are for my daughter’s grave?  We go to the cemetery every weekend.  We usually try to follow it with something fun.  Good thing there is usually some kind of sporting event to go to!  So when you see us at one of Andrew’s games, we are usually coming from visiting Mia’s resting place.

We miss her every day.  Andrew remembers her with questions or comments or with pictures or objects around the house. He even remembers her in some school projects.  She is still in the hearts and minds of many wonderful teachers and staff at school.  How special they all are! 

Andrew also takes her teddy bear with us on our trips so Mia can go too.  Last year we had a true tornado warning and had to run to the basement in the middle of the night.  Michael grabbed Andrew and I grabbed the phone, the flashlight and teddy.  Could you imagine if we lost all her things?  All the stuff she wrote or touched?  Just her memory will never be enough.

 

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Mia Remembered 2
Holiday 2008

This year on Mia’s birthday, we had a gathering of friends and neighbors at the cemetery.  It was beautiful yet tragic.  Mia and Andrew’s friends did crafts and shared stories.  We listened to Mia’s song and released a little butterfly named Mia.  We had a small service conducted by a dear friend and the kids were comforted by the wonderful school staff.  We thank the many of you who helped us through that day and we were touched by your hugs, both physical and emotional.

Mia was so special that the lady from whom we bought our Christmas ornaments each year.  She remembered that Mia would bring everyone’s names on a list to the craft fair so as to personalize each ornament.  This year and last year the kind and talented artist made special angel wings to put on Mia’s little character on each ornament just for us.  That was so sweet.

Mia also touched one of our friends who used to own Sugar and Spice nail salon.  We met her when Mia went to her dear friend Stephanie’s birthday party there.  She always remembered how Mia’s nails were done so nicely and even tried some new artwork on Mia’s nails.  She just opened a new place called ABC School of Nail Technology and Cosmetology and dedicated the nail section to Mia and called it “The Edge.”  Mia’s picture is there on the wall.  And girls, she does parties!

Did you know that American Girl named her 2008 doll of the year Mia?  A coincidence?  I don’t think so.  We remember Mia’s Bear Necessities Small Miracle to American Girl in Chicago with our good friend Julianna.  What a fantastic day that was!  Julianna herself has been going through a trying health crisis herself this year, but we are glad to say she is greatly improved.  We love you Jules!

Another friend who never met Mia put her pictures to song on You Tube.  www.youtube.com/watch?v=b-VvZtALE1U.  I still can’t watch it all the way through.

As for the foundation in Mia’s name, at this point we haven’t the ingenuity or motivation to get much started.  We do have several small businesses who will be interested in helping out.  We need plans and action for fundraising and ideas on how and where to distribute funds.  Let us know if anyone would be interested in taking over this formidable project!  I haven’t the energy just now.

Thank you one and all for once again remembering our Mia so kindly and thoughtfully.

 

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Mia Remembered…
Holiday, 2007

So many of you, family, friends, neighbors, and even people we don’t know have been so kind and wonderful to us.  You have been sharing our grief and helping to try to ease the pain.  Even those who don’t know what to say or do, you have been here for us and that means so much.  And some of you have gone out of your way to do something special to remember our wonderful Mia.

First, the amazing people at Woods Creek School have had an artist paint a mural of Mia in her third grade classroom with some of her artwork done just as it really looks.  In the picture are Andrew and some of Mia’s friends and a few special things that Mia liked.  What is more special is that the students in the picture can be anyone who can see themselves in Mia’s life, and that the mural will stay at the school forever even as those who remember her move on.  The principal, Dr. Betsy Les and Mia’s third grade teacher, Gail Kelley were instrumental in making this mural happen and we are forever grateful for their caring.  More on the mural can be seen at www.funartmurals.com and click on Woods Creek School.

The children also showed their caring for Mia by writing beautiful notes and creating tokens to keep to help them remember.  In June the front of the school and our entire driveway, sidewalk and street in front of the house were covered in chalk art for Mia and Andrew.  Each friend has a special memory of Mia and also something special of Mia’s that they can hold and remember.  The neighborhood and school kids are watching out for Andrew and making him feel included.  Andrew even mentioned that a bully left him alone because he found out that Andrew was Mia’s brother. 

Our wonderful neighbors, led by Sue Cristante, planted a tree in our local park with a plaque that has a message for Mia.  This is a spot that friends and neighbors and kids can come to visit.  Some friends helped us work on a custom design for Mia’s headstone, the final draft done by Ann Marie Krol.  It is just right for Mia.  Among other things, our friend Tracy Mathesius made a beautiful movie with pictures of Mia through the years set to very special music.  We will treasure this forever.  Michael’s college friends, Mugsy and the Doyle brothers are setting up a special charitable foundation in Mia’s name.  And  Bravehearts, the horseback riding therapy people are making a waterfall garden for Mia.

There are so many things that all of you have done to remember our beautiful Mia, and we are so blessed to have such kind and caring people in our lives.  We are glad that Mia meant so much to you.  She was that special, we know.

 

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Mia’s Wellness 18
June 18th, 2007

The last few nights and days have been very long and very frustrating.  Mia has been having abdominal pain either due to constipation or urinary retention from pressure on the spinal cord or possibly a tumor causing difficulty passing stool or urine.  Along with abdominal pain, she is getting very itchy and agitated either from the medication or her neurological condition.  It is difficult to tell if she is having headache or back pain with all the other overwhelming symptoms.  We have been having much difficulty in finding a combination of treatments to keep her comfortable.  We feel so helpless.

 

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Mia's Wellness 17
June 12th, 2007

Mia has been home since Friday in palliative hospice care.  She is talking more and eating well and each day seems a little brighter as the brain swelling improves.  She does have some pain and her lower extremities don't work well due to spinal cord compression.  We have been talking to her and reassuring her that she is so loved and now God will make her better.  She says she is not sad that all these things are happening to her.  Some of her wonderful friends have been visiting and they get big smiles from Mia. 

Love to you all.  A

 

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Mias Wellness 16
June 7, 2007

Mia is currently in the PICU at Lutheran General.  She has suddenly developed a “cancer meningitis” and is barely responsive.  The cancer has not responded to the chemotherapy. There is nothing else they can do for her except to keep her comfortable.  We hope to bring her home tomorrow into palliative hospice care.

 

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Mia’s Wellness 15
April 7, 2007

The amazing Miss Mia does it again!  After Mia had surgery to remove a large tumor in her brain on Valentines Day, she recovered quickly and without complication.  She went home from the hospital after six days and visited at school a week and a half after that!  The symptoms that alerted us to her brain involvement have resolved.

Three weeks after the surgery, Mia underwent another procedure called gamma knife to target other metastases to her brain.  This is a radiation oncology procedure, considered “bloodless surgery,” done under general anaesthesia to precisely target the lesions with an intense beam of radiation, without damaging nearby tissues.  She was kept completely still in a halo (like you wear when you break your neck) during the procedure so that MRI pictures could be used in conjunction with the radiation.  Unlike her regular radiation therapy, this is a one shot deal.  This was all done by an amazing team from Lutheran General Hospital and Alexian Brothers Hospital.  There were two neurosurgeons, a radiation oncologist, two anaesthesiologists, a neuroradiologist and an awesome team of nurses and support technicians.  When we told Andrew that there were five doctors in the room with Mia he said, “Is that all?”

Speaking of radiation, she has finished with the 5 weeks of radiation to her left thigh with no side effects.  She is also back on chemotherapy, which she has been tolerating fairly well.  We are still getting our treatment by our great doctors at Lutheran General, who have been working with the rhabdomyosarcoma expert at Children’s Memorial. 

The plan for now is to just keep on with this chemo for as long as we can, or until things change.  We will be doing regular scans to follow her progress.  All this treatment is obviously not without complications, but for now we just need to get through today.  Our daughter amazes us every day!

 

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Mia’s Wellness 14
January 4, 2007

Our New Year tidings are not happy ones.  The cancer is back, bigger and badder than before.  And we are running out of time…and options.

Mia has already been through two separate year-long chemotherapy regimens, both of which have been shown to be effective in treating rhabdomyosarcoma.  We may not have many chemo options left, since the cancer seems to be resistant to the recommended regimens.  We may be left with experimental drugs of uncertain proven efficacy.  In addition, her body is still not ready for chemo.  Her bone marrow has been so used up that her platelets are still too low for chemo.  The last two doses of chemo this summer made her so sick that we almost lost her then.  I am terrified of the next dose of chemo.

I’m not even sure if she can get any more radiation.  She has had so much already.  Our next step is to speak with the rhabdo doctor at Children’s Memorial in Chicago to see if there are any choices available to us.  Our doctors at Lutheran General have no more options for us.  We have to decide quickly though because this beast has shown itself to be very aggressive and very stubborn.  The gravity of our situation is overwhelming.

Luckily Mia still is feeling well and is so happy that her hair is growing back.  We haven’t the heart to tell her that it may fall out again, that we need to go to the hospital again, and that she will be so so sick again.  She has been so happy and everyone comments on how well she looks.  We would never have known that this demon has crept back inside her.   Please pray that this evil thing will not take my brave beautiful baby away.

 

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Mia’s Wellness 13
November 12, 2006

Once again things are slightly chaotic.  The important thing is that Mia has been feeling well and has missed very little school.  This is because she has been off chemo since August.  Whether that is a good thing or not is another story.

She was terribly ill in the intensive care unit just before school started.  We were actually dreading the next dose of chemo because she was getting sicker with each dose.  Also, it was taking her longer to recover each time.  So the doctors decided to end chemo early.  Needless to say, we were a bit panicked by this.  The idea is to give chemo fast and furious, just allowing the body to recover enough before the next dose.  The doctors were worried that waiting too long between doses would not help treat her cancer and may cause more of the toxic side effects, including a secondary leukemia.

She received a total of 45 out of 50 doses and had this new area radiated as well.  The spot that is left went from “miniscule” to “barely perceptible” but it is still there.  The doctors believe that it is inactive at this time and we are anxiously awaiting the results of a scan done last week.  If the scan is good, we plan on going to NJ for Thanksgiving and to Canada for Christmas.  If the scan is not good, we won’t be going anywhere.  And if she needs more chemo and her body is not ready for it, God knows what we are going to do.  We just want it gone.  Completely and forever.