Tuesday, May 30, 2006

An Affair of the Heart 3

Hello Everyone,

We wanted to take this time to tell you about what Bay Village High School is doing.
Jim Cahoon is the principal of Bay High School and he contacted us a few weeks ago and told us about the Bay High School Youth Philanthropy Fellowship.

These young adults are a selfless group of individuals who enjoy raising money to make a difference in someone's life. They exist to raise awareness to fight disease. In addition to raising money and awareness, they take the time to honor a few individuals or groups who also make a difference in our society. The more you learn about Bay High and the YPF, the more proud it makes you to be a member of the community.

When Mr. Cahoon contacted us, he told us about a young member who told the group about our Maria's plight. After which, he asked us if they can help support Maria. We were honored and humbled by their offering. Please see the information below. It is this Friday night. It is a fun night and, what can I say, it is a great cause.

God Bless,
Ed and Megan

An Affair of the Heart

Youth Philanthropy Fellowship Presents:
Benefit Banquet & Silent Auction
Bay High School Gymnasium
Friday, June 2, 2006
5:30 p.m. Silent Auction
6:15 p.m. Dinner
Dinner will be a Buffet Chicken Dinner with all of the trimmings.

Tickets: $10
(Checks payable to Bay High School)

YPF Will Also Honor Individuals For Their
Philanthropic Generosity to the Bay Village Schools & Community

For more information, contact:

Bay High School YPF
29230 Wolf Road
Bay Village, Ohio 44140

Or call Joey Glase 835-3824 Drake Spence, 835-9785 Jim Cahoon 617-7402

Saturday, May 27, 2006

Update as of Friday May 26, 2006

Hello Everyone,

Today was the 3rd last radiation treatment for Maria. Tuesday and Wednesday will be the last two. I am sure that we don't have to tell you how excited everyone is to be going home. We will never forget Memphis, TN for the rest of our lives. Maria will now need to return monthly for scans and doctor visits.

We wanted to take this time to tell you about all the special people that we have met here. There have been so many people that have done so much for Maria, you would think that we have lived here for 30 years.

It all started with an old high school friend of ours that introduced us to her aunt and uncle. (as you heard before in other posts) As you know, they are the ones that called St. Francis of Assisi.

Our blessings have been numerous. First we were able to get Maria into St. Jude with the number one Radiologist in the world. We also have one of the greatest Oncologist in the field using the newest and greatest Chemotheropy, Tarceva. Second, Monsignor Peter from St. Francis has let our family into his home and has let our sons run all over his yard! God bless you Monsignor Peter! Next, we have met a few of the women in the church from 3 different Moms' groups. They have brought food to us every single weekday night for the last month, they have brought toys for our children to play with, they have brought their children here to play with ours and to keep us company, they have given Maria and her Mom a girls' day out to get their nails done, they have given us gift cards to Kroger and Wal-Mart and more. But what they have given us that is better than everything else combined is their love and their prayers. They have signed up until September to have the Novena to the Infant of Prague said for Maria and our family every day. May God bless all of you. We pray for you every day.

Now on to the most important thing in the world--Maria.
Today was a great day. First, at 9am we went to Audiology to have a final check up for Maria and test her hearing. As most of you may remember, Maria had severe hearing loss in her right ear and could not hear voices, and only some sounds. Our doctor told us that this most likely will never come back and, if it did, it would take a long time and only be partial hearing. We noticed Maria's hearing seemed to be better than they had predicted. Today the audiologist tested Maria 3 times because she had to validate what she didn't believe was possible! Not only does Maria have hearing back in her right ear, it is 100% back to normal. The audiologist said that she had never seen anything like it in the past. Maybe once, maybe, but she could not remember. She said that even if the tumor was only blocking the nerve for that short period of time, there is always some type of internal damage. She said that she only calls the doctors if there is significant change in hearing, and today she was going to have to call all the doctors. She also said that normally, she doesn't call the doctors with good news, only bad.
Miracle or Science?

That was great news for us today. Keep in mind that this in no way means that Maria is cured, she is not, but she is on her way!

So what is next? Well, we were told today Maria will be getting a CT scan next week to check on the activity of the tumor. This is not an MRI, just a quick scan. This will give us a good baseline to work from going forward. This was not scheduled until today and we were told that this is a good thing.

So, we are very excited about next week and look forward to spending this weekend swimming and laughing. Miracles can happen.........and do.

God Bless
Ed and Megan

Wednesday, May 24, 2006

The Prayers for Maria Fundraiser!

Mark your calendars for a fundraiser, the Wine Tasting and Silent Auction for Maria!

  • What: Wine Tasting and Silent Auction sponsored by Friends of Maria

  • When: June 9th, 2006 from 7:00PM to 11:00PM

  • Where: The Irish Heritage Club
    726 Avon Belden Road (Route 83)
    Avon Lake, Ohio

  • Map: Click here

  • Dress: Cocktail attire

  • Admission: $50 per person (please RSVP before June 1st)
    Make checks out to "Prayers for Maria" and send them to
    Shelly Norehad
    344 Rye Gate
    Bay Village, Ohio 44140

Some of the great auction items are going to include vacation condos in Cabo San Lucas, Holiday Valley, Peak 'n Peak, and Saddlebrook Resort in Tampa, Florida, great tickets to Browns, Indians, Cavs and Buckeye games, gift certificates to local restaurants and businesses and much, much more!!!! Did we mention the signed LeBron James jersey or the signed Browns footballs and helmet?

If you are unable to attend but would still like to donate, please go to the donations section on the right side of this page. Proceeds will go toward family expenses and a cure.

If you have any additional questions, please feel free to contact Gretchen Busch via e-mail at gbusch@comcast.net or on her phone at (440) 930-5348.

Wednesday, May 17, 2006

Update as of Wednesday May 17, 2006

Hello Everyone,

Yesterday was Tuesday, and Tuesdays are doctor days.
So, let’s get right to the most important thing in the world, MARIA.
Maria received her 20th treatment yesterday and has only 10 left. She is doing well. Her white blood cells have gone up slightly and her platelets are steady at about 350,000 (which I am told is very good). She is starting to lose a little bit of hair. This is not because of her Chemotherapy, but because of her radiation. It will most likely bald or thin in about 3 or 4 spots. After her treatments stop it will grow back a little thicker and a little curlier.

We have lowered her steroids to almost 1 mg a day from 8 mg. Having been on that many steroids makes you very temperamental and constantly hungry. It causes you to put on weight. It is very noticeable that Maria has come down on her steroids. She laughs again and has started to lose a little weight. They tell us that it should take about 8 weeks for her to lose the weight gain. This is amazing because she has gained about 15 lbs and I would love to lose 15 lbs in 8 weeks.

Yesterday also had a surprise for us in that they scheduled an MRI. We were not expecting it because we were told that it was not supposed to be scheduled for another week or two. It was not a complete MRI, it was an MRI known as a Simulation MRI. The simplest way for me to explain it is that it is not a very detailed MRI, but it is used to determine location and size only. (Personally, I think it’s just an older machine that they can only use for basic reading, but I am no doctor and I did not stay at a Holiday Inn Express last night so I’m just making that up.)

Just to summarize for you, Maria’s tumor has caused a lot of problems with her motor skills. In the cranial area, she lost her hearing on her right side, her ability to speak clearly, the right side of her face had gone numb, she had trouble swallowing, and she was seeing double. With the body, it is her left side. She was weaker in grip, walking, and all other motor functions on the left side.

Weeks ago, when the treatments started, we were told not to expect any of her cranial issues to come back, at least not for a few months, but that we should expect her body to come back. Last week our radiologist, Dr. Larry Kun, told us that Maria was coming along FASTER than expected. She has about 90% of her talking and swallowing ability back. She can smile about 50%. She can wink both her eyes separately. She can even hear a little, just a little from her right ear. She can walk very well.

Dr. Kun told us that even though we have seen some improvement, he expects not to notice any shrinkage in the tumor itself. The treatments have helped the nerves around the tumor, but have not started to shrink it. Just so you know, radiation continues to work for up to 5 months AFTER her last treatment. We should expect to hear some results Thursday or Friday.

So what about her Chemotherapy? Well, we are using Tarceva which is an Erlotinib drug, similar to Irrissa, but supposed to be newer and has been proven to be more effective in adults. No one knows how this treatment will work since we are one of the first to try it. So we don’t know what to look for or when to expect anything. I will tell you after all of our research, we hope it will keep the tumor from growing again or maybe even kill it. In order for this to happen we're counting on the miracle.

We will keep you posted.

As for the family, we miss home. It is really hard for everyone to play since they have no friends to play with. We are in a corner house of a busy street so it is difficult to let the boys run around and play without constant supervision (which isn’t too bad because we actually get to spend a lot more time with them).

Megan is doing very well health wise for just having a baby 8 weeks ago with the serious complications she had (it seems like 8 years ago since so much has happened). She is the best mom and looks great. She is a pillar of strength for Maria. They are best friends!

We are counting the days until Maria’s last radiation treatment on May 31, 2006. Afterwards, mom and the kids will be on a plane back home…dad will be a day behind because he is going to drive the family van back.

I had the opportunity to go home last week for about 30 hours to check on the house and try and get some work done. I stopped in on the noon rosary at St. Raphael’s. This is such a powerful form of prayer especially in the month of Our Lady. We have received so many notes and comments from many people we don’t even know that say because of Maria, they are praying more. That says something. We can not pray enough. May 31, 2006 is the last day of the noon rosary at St. Raphael’s and Maria’s last day of radiation treatment. We are hoping that everyone storms the church with a very strong rosary on that day. When I was there, it only took about 22 mins. It was awesome. If you have the time, please mark your calendar for May 31, 2006 for the noon rosary for Maria.

Everyone has been so kind to us. We can not tell you how much support we have received. Everyday there is another thoughtful person offering there time, energy, love, prayer and resources. Thank you everyone. We love you.

God Bless,
Ed and Megan

Saturday, May 13, 2006

Update as of Saturday May 13, 2006

Hello Everyone,

Today was a good day. Maria didn't have treatment and didn't have any tubes sticking out of her. She was happy all day. It was about 88 degrees here and Maria went swimming! This was something that Maria was unable to do since we arrived. She loved it! Maria, the boys and dad all played in the pool while mom and Blake watched with smiles.

I will say this, THE WATER WAS COLD!.
This was the first really nice day in about 2 1/2 weeks. Sun block was on.

Maria made mom a really nice card for Mother's Day all on her own and then she put it in a secret hiding place, she also did the boys a favor and put their cards with her's.....Mom's going to love em.

Have a Happy Mother's Day everyone.

We are going to enjoy this moment for a little while. We will post again soon with more details.

Thank you for your continued prayers.
Ed and Megan

Friday, May 05, 2006

Update as of Thursday May 4, 2006

Hello Everyone,

It’s Maria’s third week at St. Jude’s. The boys and I came down a week ago Saturday. The first week was a little rough but we are starting to adjust better this week. We are so thankful to have a nice place to stay where we can all be a family. The people here at St. Francis of Assisi parish are so kind. Thanks to my friend’s aunt, we have really been treated so wonderfully. We are so grateful to her for helping us find a place to stay and we even had a terrific meal dropped off this week from one of the Mom’s in the parish. We still do not cease to be amazed each day at the people who come out of the woodwork to help us. They don’t even know us, but they are right there to lend a hand to us. It’s a humbling experience.

My first day at St. Jude’s with Maria was a very difficult day for me. Maria needed a wheelchair to get around the hospital because she would tire easily and her balance and eyesight were not stable. She was getting worse. It was very noticeable to me after being separated from her for a week. Being in the hospital that first day made my heart sink. I noticed when we got into the hospital Maria’s voice got very low and she became very sad and scared and I hated that. I felt somewhat angry with the place. You look around and see many children who are not well. You think to yourself “what are we doing here? This isn’t where we are supposed to be.” Reality started to really sink in for me. Many of the children are bald. Many wear masks. Maria asked me if she would have to wear one and I did not know what to say. I thought how relieved I was that Maria would lose very little hair. Then it occurred to me that though that was a good thing, it also meant that she has an inoperable tumor.

Ed took me around and showed me the ropes. Of course Ed had already mastered everything, not to mention everyone in the place already knew who he was. As we walked down the halls people would wave to him or stop and talk. If you know Ed this isn’t surprising at all. There was some comfort in knowing that Dad was making sure he was on top of everything for his girl. He is doing an unbelievable job.

Yesterday Maria received a package from her Kindergarten class. She brought it home and went through all of the cards from her fellow classmates and it was so nice to watch her smile and laugh and get chatty about all of her friends that she loves. She misses her classmates and going to school at home. She couldn’t get enough of their cards and we couldn’t get enough of seeing her happy. Thank you Mrs. Ritzler.

Yesterday and today we have started to notice some improvement in Maria and we are very excited. Maria is noticing it too and it makes her happy. They say you enter into the period of “false hope” when your child starts to improve. Our prayers are focused on continued improvement without looking back. One thing you learn is the doctors will say what they will and must, but you must reach beyond that. So many of you are praying for our Maria. This is so important to us and we are so appreciative to all of you. It is everything. We are absolutely moved beyond words at the outpouring we have seen. Ed and I talk about the kindness we receive everyday and we don’t know how we can ever repay everyone. Please know that all of you, too, are in our prayers and thoughts each day. It truly shows the power of God when you witness the outpouring of love towards our little girl. Please continue to pray. Please don’t forget. This is what we are counting on. God is listening.

Ed and Megan