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

18 comments:

Anonymous said...

We continue to pray and hold all of you in our thoughts. Not a day goes by without thinking of all of you and your courage. God bless you all. Peace.
Aunt Val and Uncle Joe.

Deb Gordon said...

Hi all~
Thanks for the update! We are so glad to hear that Maria is smiling and some of her motor skills are improving. We have attended the rosary and you are correct, it is very powerful. We will keep attending, especially on the last day of treatment to pray for Maria!
God Bless,
The Gordon Family

Anonymous said...

aunt megan and uncle ed were all praying for u and maria at home in school and at work and i know in our schools stuents and teachers r praying my religion class even said a decade of the rosary at noon. we will keeep you in our prayers and we love all of you guys.

love regina and the rest of the strumbly family

Anonymous said...

Dear Megan and Ed,

You continue to be such a tower of strength and faith to all of us and I know that we all have faith in a miracle for Maria. Know that not a day passes without Maria being in my prayers at least 100 times. God Bless and Be with You always.

Laura Notarianni said...

Our loveley Mother Teresa shares, "If you want a happy family, if you want a holy family, give your hearts to love." Your family's strength and faith is inspiring ... God bless each moment you share together.
The Notarianni Family

Anonymous said...

We hope you get better soon

Love Maggie

(St. Raphael's Kindergarten)

Anonymous said...

Dear Megan & Ed,

We miss you so much. The days will not go fast enough until I see those little ones running around the cul-de-sac! Thank you for showing us your Grace it means the world to us!

Love,
Tom,Gretchen&Girls

Anonymous said...

megan and ed, keep the faith. you are at the home stretch now. hug maria for all of us. what a special little girl she is. you have inspired all of us to be better parents and spouses.. thanks for being a true inspiration. onward.... good luck with the future treatments. god bless you continually with strengh and love.

Ragan Folan said...

Hi Ed and Megan:

We are reading this website regularly for updates. We are all praying for Maria and all of you. We miss you tons and are so hopeful for a positive outcome for Maria.

"Mom" says hi too!

We love you,

Ragan, Dara, Caitlin, McDara and McKenzie

Anonymous said...

I pray daily for this precious little girl and your family. My heart goes out to you all. I keep up with your website daily or as often as write an entry. You have the love and prayers of so many.
Bless You, Grammy Joyce from Ohio

Anonymous said...

Hi-
I read come and check this website every day, to see how Maria is doing. I love hearing how strong Maria is, and not crying! I am 11, and I don't even think I could not cry durring all of these things. I hope Maria will get better soon.
God Bless.

The Kaiser House said...

Dear Megan & Ed,

You, along with Maria, continue to be in my thoughts and prayers everyday. Your strength and compassion has helped me on many occasions in my daily life. Maria has brought so many people together over the past 7 weeks. There is such a positive energy here for her. We can't wait for you to return home.

Maria,
Rachael has been praying for you and asking about you. I read your latest update to her and she wants to send you an email and share some pictures with you. I will help her after school this week. I hope it was nice this weekend so you could go swimming again.

God Bless You McNamara Family!
Betsy

"Trust in the Lord with all your heart and lean not on your own understanding. In all your ways, acknowledge Him and He will direct your path." Proverbs 3:5-6

Anonymous said...

Ed, Megan & Maria,

We heard about your family from a friend and wanted to let you know that we are praying for Maria's healing and strength for all of you. Prayer is powerful!! We will especially keep you in our prayers on the 31st.

God Bless you all,
Wendy Luers & family (in Cincinnati)

Jennifer James said...

Ed and Megan, my name is Jennifer and I know of your family through Melinda Kearns at St. Francis. I am also a parishioner there and have a now 4-yr. old who is a patient at St. Jude being treated for a rare form of leukemia. I read your very thorough description of our St. Jude facility! Good job! lol. I understand things are very challenging for you, but this journey is so bittersweet. Your faith will grow to a depth you didn't otherwise know existed, your pain as a parent is very raw and real. No one understands like another cancer parent. Prayer becomes a tangible thing that you didn't really appreciate "before." You wonder what you complained about before cancer? Anyway, I just want you to know I'm praying for you (isn't it nice to feel cradled in prayer?) and your family, and that I'm a little jealous of your pool as the heat starts to crank up here in Memphis! Jennifer jjdoc2@bellsouth.net

Anonymous said...

Ed & Megan, we didn't get a chance to visit with you before you moved but our thoughts and prayers are with all of you every day.

It was very nice to read about the progress Maria has made to date, and we wish her continued success with her upcoming treatments.

We look forward to having you back in the neighborhood. If we can do anything for you just let us know.

Dennis, Sara and Julie

Anonymous said...

As always, I will do anything and everything I can. Especially for people who have been so selfless and strong for me throughout my entire life. Just let me know. My prayers will continue.

Love,
Uncle Ryan

Anonymous said...

Ed & Megan... What a precious little girl you have. Being the parent of 2 children, I realize the deep love and pain you both feel for Maria. Being Catholic as you are, I know, understand and appreciate the power of prayer. My family and I are keeping Maria and your entire family in our prayers. Special masses are being said for you at our church. Stay strong and know that God is looking after all of you. God Bless you Maria! Keep smiling and enjoy the small blessing that come your way each day.

Anonymous said...

Ed and Megan,

Your daughter is so beautiful! I am going to add your family, and especially Maria, to my prayer list of special people that I pray for every night. I hope your miracle comes soon. It sounds like you have been very patient and I am sure God appreciates that. Keep patient and know that one more person has been touched by your story.

May God bless you,
Atlanta Age 16