Monday, April 24, 2006

Update as of Monday April 24, 2006

Hello Everyone,

Sorry for the delay. We have moved again and will not have access to the internet until late Wednesday.

As some of you may know, our family is now together. Megan and the boys did not come down until this past Saturday. It was very difficult to find a place to live. All of the housing at St. Jude would not allow more than 4 people in it.

We looked all over for a furnished home to rent until the end of Maria’s treatment which is supposed to be early June. The problem is that anyone that is trying to rent a house only wants to rent for a year. The only other option was to rent an apartment. As you may imagine, corporate housing is very expensive but that was our only choice.

Until a miracle struck again, that same close friend that helped get us into St. Jude, called their local catholic parish, St. Francis of Assisi in Cordova, which had an extra home on their property to see if it was available. The kind pastor here, Fr. Peter, offered the home for us to rent. What a kind offer. We moved in Saturday. It is clean and in a very nice neighborhood. As we walked around the premises, the miracle continued. There is a pool in the backyard, that is up and running!! The last three days have been over 80 degrees and the boys are having a ball.

Maria had not seen her mother or brothers in almost a week and she was so happy to see them. You really don’t realize how important keeping the family together really is until it was broken apart and then put back together again.

Having to move into a home for 30 days is a lot of work. We are just trying to get into a routine. Ed's dad drove the family van down for us....13 hours. Thanks dad.

Megan’s sister, Maureen, came down with our family to help get us acclimated and to let dad and mom go to the hospital together with Maria. Having Maureen down here is another miracle. She is so much help; we don’t know how we could have made it these last few days without her. We want to thank Maureen’s family for making the sacrifice of being without their mother for a while so that she can help us. Thank you Sidors.

Now, on with the most important item, Maria.

Today was not a great day for our angel. Today Maria had surgery to have a “port” placed into her chest. For those of you that have never heard of a “port” it is an access area that is placed under her skin that gives the medical team a quick and direct access to a major vein so that they can place an IV in easier, or draw blood or give her medication faster. It will actually be better for Maria because now they won’t have to stick her every other day to put her IV in. It is just difficult for a 6 year old to have surgery, radiation and Chemo all before lunch.

Today was day 6 in her treatments. We are going to have 30 treatments of radiation Monday through Friday with the weekends off. That puts us home close to the end of May or early June.
Let me explain how these treatments work so that everyone is up to speed. We are currently using radiation with Chemotherapy (Tarceva) on the tumor in her brain. The radiation is a small dose every day. After the 30 treatments, the radiation continues to try and shrink the tumor for somewhere up to 5 months.

So what does this mean? This means that Maria will take a while to start to heal. She is still not back to anything close to normal and in many ways seems to be getting worse. But we are told that this is normal. The doctor says that if she takes to the radiation, then we should start to notice some improvement in about 4-6 weeks.

Over the next few months, the tumor will hopefully then shrink into nothing, but normally the tumor only shrinks to where it might not have that much of a noticeable affect on Maria’s motor skills. If the Chemo and radiation don’t eradicate the tumor, it usually comes back in normally about 4-6 months or more and then starts to grow again. If this happens, there is only relapse treatment to try, which usually does not have any effect. So as you can read, we are really counting on the miracle of Mother Teresa, Pope John Paul II and God.

Hopefully, we can get our family back into some type of routine and get some “normalcy” into everyone’s life.

Thank you everyone for the continued prayers and love.
Thanks
Ed and Megan

P.S.
Please check out the addition to the website of the noon rosary.

21 comments:

Anonymous said...

Dear Edward, Megan and family,
We are so happy that Megan and the boys are with you and Maria. We continue to pray every minute of every day for a miracle for Maria. Just know that we're all still here for you with thoughts, prayers, and love.
Love always,
Meg, Brian and family

Anonymous said...

So glad to hear you are united as a family! You are very blessed to have such a wonderful extended family. We all continue to pray for Maria's miracle.

The Pochatek Family said...

Ed and Megan,
We are saying the rosary each day for Maria. We will continue to pray for all of you. Your strength and faith will make it happen. We believe in miracles too and if there was ever one to deserve one---it is sweet Maria. Our love and prayers go to all of you---The Pochatek Family

Elizabeth Phalen said...

Maria,
Thinking of you daily. We're happy that you have your mommy, daddy and brothers with you. God is watching out for you and will always hold you and your family in the palm of his hand. Love and Kisses

Anonymous said...

Just wanted you to know that we are still praying for all of you and especially Maria.
The Pippin's, Mike Sr., Ginny, and Mike Jr. (Ryan's friend)

Anonymous said...

Family McNamara -- May God's love continue to lift you throughout these trying times. We're with you in spirit and prayer.

The Hubbells

Anonymous said...

Dear Ed and Megan,

Thank you for this website so that we might reach out to you in some way. Rich and I pray for you all and are glad that you are all together again as a family.

We think of each of you often and pray for Maria's quick and successful recover daily.

Hugs to you all as you continue on with this difficult journey together.

Jennifer and Rich Sachwitz

kathleen debarr said...

Ed and Megan,
It is comforting to know that you are all together! Thank God. My prayers are with you daily! Please give an extra hug for Maria from me.
Much love and continued blessings
Kathleen DeBarr

Rich McGowan said...

Hi Ed and Megan,

I am glad to hear that your whole family is together during this difficult time. Please know that the treatments will hopefully go by quick and you will be home soon. My son had a port also put it, your right, it's a big help on the days that blood needs to be drawn. Unfortunately they need an IV for his MRI's, so his need for it is little or none now.
Please know that I check Maria's website daily and I am truly sorry that you and your family has to go through this. It looks like you have a great parish and many friends and family to support you. Please use them, especially on the bad days.
I hope everything continues to improve and that Maria gets the miracle cure that she deserves.
Please know that Maria and your family are in my prayers each and every day. Please know that your family is not alone in journey, there are alot of familes going through the same tumor that care what happens to Maria and your family. I count my family as one of them.
In God We Trust.

Rich McGowan (Matthew's Dad)

Anne Reynolds said...

May God bless you all and give you the strength to get through this. I know you are in good hands at St. Jude's. I have been a donor to St. Jude's since 1996. We will continue to keep little Maria and all of her family in our prayers.

Anne & Bill Reynolds & family

Julie Holland said...

I've been lucky to get to know Maria through being the AM Kindergarten librarian...I love sharing stories with the kids and they also know how much I love God's miracles in nature. As a hobby, I raise monarch butterflies from eggs found on the milkweed in my garden and bring them in to share their amazing life cycle with my students. As if that isn't enough to convince us of a miracle, monarchs from all over the U.S. seem to know to fly to a certain area of Mexico to overwinter. The scientists aren't sure how to explain it. This year through the University of Kansas study, I "tagged" 49 butterflies and PLEASE TELL MY SWEET MARIA that YES, I just found out that one of our fragile little butterflies travelled 1,858 miles and made it to El Rosario, Mexico!!! (www.monarchwatch.org) Please continue to believe in miracles and that all things are possible through God. You are all prayed for every day and Maria is so lucky to have such a wonderful family!
Love and a big hug to Maria from Mrs. Holland

Mrs. Ritzler said...

Hi Maria!
We miss you so much in our kindergarten. The children and I pray for you everyday. We can not wait to see you again! You are such an important part of our class.
Remember how much Jesus loves you!
We have our poster of Mother Tersesa hanging in our classroom. Everyday, we ask her to watch over all of us.
We love you so much!
Love, Mrs. Ritzler

Allen Patrick said...

Dear Ed and Megan,
My name is Allen Patrick from the East Malaysian state of Sabah.I am married with 3 kids and i work at the Sabah Wildlife Dept.
I have been a regular visitor to the " CandaceJoy" Website and and thats how i happened to come across this link.
Its very hard to see so much sufferings around us and worse when when it happens to small children.
I would just like to let you know that i also will be remembering Maria in my daily prayers and i truly believe that Our Lord will intervene and bring full healing to her.
God Bless all of you and please say hi to maria for me.

Allen Patrick
Kota Kinabalu,
Sabah,
Malaysia

Anonymous said...

Maria, you and your family are never far from our thoughts and we pray for you almost constantly. Your smile is probably melting the hearts of all of Memphis.

Love and prayer,
The Fenton Family

Deb Gordon said...

Dear Ed and Megan,
We were in the mountains of Sedona and visted the Chapel of the Holy Cross. The chapel is built in the mountains, jutting out of a 1000 foot rock that is as solid as the Rock of Peter. As a family, we prayed for Maria and vizualized her healing. Teddy lit a candle for Maria and we prayed again! They say peace will come to those who enter or are prayed for in the chapel! We were certain when we left that the Grace of God would envelop Maria. Peace be with all of you during this time.
We were glad to hear that you are all togehter as a family!
Love,
Deb, Ted and Teddy

Anonymous said...

I continue to have hope for Maria and your family. No words really help at a time like this, but I'm sure seeing the warm wishes, prayers and hopes from so many people warms the heart.

I don't know much about life, but I believe that God has His strongest and most beautiful angels with and in children like Maria. Their strength, fragility, faith and love teach us some pretty powerful lessons about living and loving. It's clear Maria has touched so many in a short time.

I hope you continue to find the wonderful support and strength of your family, friends, community and God.

Your angel is in everyone's thoughts and prayers.

Anonymous said...

Maria & family,
Although you don't know me, my mommy is your gym teacher at St. Raphael's. She tells me that you are a wonderful little girl that is full of life. Know that my family and Mrs. Conway are praying for you & wishing you comfort throughout your treatments.
In Christ,
Bethany Payne

Aunt Ei said...

Eddy and Megan - I hope that you might have a brief moment every now and again to check the Visits box at the bottom of this website from time to time. It is truly amazing the vast numbers of people that check Maria's website. In the past three days alone there were over a thousand hits on the site. Even more heart warming are the greetings and prayers from literally all over the world!

Please tell Maria that EVERYONE around the world is praying for her! A miracle is sure to follow!

Ei

The Wohlwenders said...

Ed and Family

We think of you often and are praying for you. Keep your hope alive.

The Wohlwender Family

PS. I did not see it, but can you post the address of where you are staying?

Susan Killian said...

I will pray the rosary for Maria and your family--- plus I will add Maria to our Parish prayer list. Please be assured of our prayful support.

The Killians
Wauconda IL

Allen said...

Dear Maria,
May Flowers and Rainbows Come Your Way,
Bringing Joy and Laughter all through this Day.
...I was thinking of you today and i thought i'd stop by to say hello and see how you are getting on...and it was really nice to see your pretty photos here.Hope you keeping smiling always cos it sure brightens up my day.
Jesus love you Maria,and with your friends in heaven and here on earth praying for you i know he's going to make you well very soon.
Take care and say hi to your Mom and Dad for me won't you.

Allen
Sabah, Malaysia.