Sunday, December 31, 2006

Update as of Saturday December 30, 2006


Merry Christmas and a Happy New Year to everyone!

It has been a month since we last posted. We have been busy. We have been spending a lot of time with our family this holiday and it has been great.

We have been very fortunate that Maria has gone a month without any problems. She had a great Christmas. We have been blessed. Maria has been in great spirits throughout this holiday season.

So many people have prayed and supported us and again we thank all of you. God bless you.

What have we been doing? Well, I am glad you asked. We have been doing a ton of research. We had some long and very informative conversations with some of the top doctors in this field. All of them continue to agree that this tumor is horrible and that there is no cure. (Really? Tell us something we don’t know.)

We studied extensively all the open clinical trials available today from the Pediatric Brain Tumor Consortium (PBTC) , the Children’s Oncology Group (COG), and the National Cancer Institute, just to name a few.

We decided to look into the PBTC – 0022 study which works with Avastin and Irinotecan as the next treatment for Maria. We talked with Dr, Gajjar at St. Jude and the study was not open there and would not be open until the end of January. We discussed getting started right away so we elected to go to the closest location that had the study open. That was Children’s Hospital of Pittsburgh. (It is very disappointing that the Cleveland Clinic and University Hospitals are not part of the PBTC and are not a Phase I or Phase II hospital in the COG. In other words, Cleveland is way behind the eight ball when it comes to pediatric brain tumors.)

So, off to Pittsburgh we went on December 21, 2006 for another MRI and possibly a PET scan and to start the Avastin treatment on Friday December 22, 2006. We met with a wonderful Dr. Reggie Jakacki. She is actively involved in the PBTC and knows Dr. Gajjar very well.

We discussed Maria’s condition and what effect the Avastin study would most likely have on Maria’s tumor. She confirmed what Dr. Gajjar had told us 3 weeks earlier, that it may give us a month or two more, but we should expect much more.

So, off to the MRI we went. Our appointment was at 10:45 am at the Presbyterian Hospital (connected to Children’s). It was at this point that we really missed St. Jude. Not only could Maria not eat a thing until her MRI, but they were running 2 ½ hours behind. How could someone be 2 ½ hours behind at 10: 30 in the morning????? Nevertheless, Maria was great and waited while drawing with mommy. After our MRI, we were to return to Children’s to discuss the results and the next day’s treatment and pending PET scan.

During the scan and weeks prior to this day, Megan and I have discussed every option and every scenario we could think of when if comes to Maria’s treatment. We have always wanted to make sure that quality of life for Maria is our number one priority. We had learned that this study was probably the best study of the ones currently available and that is why we were in Pittsburgh, but not being at St. Jude made a huge difference. Maria had become a patient and was no longer a child. Now, don’t get us wrong, they treated us very well at Presbyterian, but it wasn’t anything like the sedation team at St. Jude.

Some people have asked us how we could pack up our family and move to Memphis, TN for two months of treatment. Well, it has never been clearer. NOTHING CAN COMPARE TO ST. JUDE!! I could go on for hours discussing the differences.

Back to Children’s……4:30 rolls around and we return back to Children’s Oncology. We meet again with Dr. Jakacki to discuss the results. She said that it doesn’t look like the tumor has grown much if at all since the MRI 3 ½ weeks ago. This was great news.

We continued our discussion, only this time we spoke. We explained to Dr. Jakacki that though the treatment is supposed to be somewhat beneficial, we couldn’t justify to Maria and ourselves the gain. Irinotecan could cause hair loss, tumor hemorrhage, extremely low red and white blood cell counts. Why would we take her for a two hour ride 2 days every two weeks just to be in a strange place, get poked, prodded, touched, questioned and made uncomfortable for what is maybe an “extra month or two” of life. If you add all the days up of being in a hospital as a patient and not spending time being a child with your family, is there really a gain?

So, we left for home to enjoy a great Christmas. And Maria was happy again. And so were we.

So what is next you ask? Well, I’m glad you asked. We are not giving up. NO WAY. We continue to educate ourselves on all possible alternatives and are looking for the best options. We remain VERY hopeful and are trusting God to guide us.
We have looked at many things but we haven’t read or looked at everything. One thing that we really appreciate is when people email us or post information. Please don’t assume that we have everything or know everything about possible treatments. Assume we know nothing. Please continue to send information to us.

A perfect example is Dana Farber. We had a contact at Dana Farber and we talked with them when Maria was first diagnosed. The difference was we didn’t get to the top doctor at Dana Farber. Thanks to someone like you who really cares, we were able to get a meeting to discuss a lot of options for Maria. It was very helpful. Not to mention, we got to take Maria on a quick little trip to Boston for a fun evening of shopping with mom and dinning out with mommy and daddy.

If anyone knows someone at MD Anderson that would return a phone call, that would be great. We have called 4 times with no response. We just want to know what they are working on.

We would like to thank Dr. Gajjar of St. Jude for always being there for us. He is truly a great man. We would also like to thank Dana Farber, Children’s National in DC, Children’s Pittsburgh, and Children’s Memorial of Chicago. We appreciate everyone’s time and we will continue to keep in touch. Someone’s going to find the cure….soon.

Here is a tough question for you to think about. What do you say to a six year old girl that asks you if she is going to die and then tells you she is afraid to die because she doesn’t want to be without her mommy? Keep in mind that Maria still is not aware of her prognosis. How do you tell your six year old daughter what the doctors have said?

Please continue to pray for Maria and her strength. She is our miracle that is touching so many lives.

Thanks again for your support and may God Bless all of you.
Ed and Megan

28 comments:

Anonymous said...

wow. with each of your posts, i am completely blown away with you countinued stregth and unending faith.

im so glad you had a great christmas! i hope that you have many, many more of those.

my family and i continue to dialy pray. she will get her miracle!

doodoobug said...

Hello,
I have written you before and still wish you much luck. I have come across a natural idea out of florida. It is called Cantron. I urge you to google this because it seems to be extremely helpful in brain tumors and the great thing is it will not hurt her at all. If anything she will not feel a single thing while taking it. I cannot remember if I told you about this or not!!! I try to tell everyone what I have found and you never know it could be the one thing that finally kills this beast of a tumor. Please know that I am only trying to help out because we to have lost a family member to this tumor. Her name was Leah James. When she passed I decided to dedicate my time to helping others with this tumor. Back to the subject at hand. You may also find this under cancell. Good luck and may there be a miracle for you in 2007.
Trina from Michigan

AMANDA said...

I HAVE NEVER BEEN THROUGH WHAT YOU ARE GOING THROUGH BUT I HAVE A SIX YEAR OLD SON JAMESON AND HE WANTED TO TELL MARIA HELLO.HE WANTED TO TELL HER NOT TO BE AFRAID BECAUSE THERE ARE ANGELS IN HEAVEN WHO WILL TAKE CARE OF HER. I PROMISED HIM I WOULD LEAVE YOU A MESSAGE.WE WILL PRAY FOR MARIA AND PRAY FOR YOU.AMANDA_HUEBNER@YAHOO.COM

Anonymous said...

Have you tried giving Dr. Issam Nemeh, MD a call? He is a healing doctor out of Rocky River, OH 44116.

His phone number is (440) 331- 4700.

Also, if you haven't taken Maria to one of Sr. Monica Marie's healing services over at Incarnate Ward that might be another option.

Stay focused on God. He will provide.

God bless you all.

Anonymous said...

Hello, I'm sorry that you are going through this. Our daughter Hannah Hatlen passed away October 31st, 2006 of the same tumour. We're from Vancouver, BC. We did make a trip to Houston to meet with Dr. Wolff at MD Anderson - he's a very nice man and really tried to help us. I have his email address and direct phone numbers and would be happy to pass them on, if your interested please email me. tkhatlen@telus.net we overnighted all of Hannah's records down there on a Monday and he called us on the Tuesday and we were down for an appointment on Thursday.

For Hannah we had tried many options and Dr. Wolff's best advice at the time was to try a epidermal anti growth drug. He thought it was the treatment that had the most positive responds and thought it might work for Hannah - it didn't - but it also was very safe and didn't cause any harm - she took it no problem, with no side effects. Apparentley some respond and some don't - as with any treatment.

I certainly can provide more information if your interested.
You are in our thoughts and prayers.
Tore, Kathie, Allie and our beautiful angel Hannah

Anonymous said...

Your strength, faith and perserverance should be an inspiration to all who read your website. You are, unquestionably, amazing people and parents.
God Bless you and God Bless Maria. He is with you and will guide you through all of these decisions. Trust.

Lora Baker said...

Hi. My son David, passed away in August of 2004 from the same tumor. I am so sorry for what your family is going thru. It is truly hell on earth. We took David to see Dr. Packer in Washington DC, he was wonderfully kind and supportive. He may be someone for you to talk to. David was not aware of his prognosis either, but of course, he knew that he was sick because of all the treatments and appointments. I always told him that it was because he had some "bad cells" in his head, and that each time we went to the Dr. we were putting the "bad cells" into timeout, so he would have more room for his good cells. About three weeks before he passed away, the nurses from our Hospice team thought it would be a good idea to tell David that it was okay if he went to Heaven. This is something no parent should ever have to do. I told him that he was going to beat me to Heaven, but I was right behind him. I talked to him about family members who were there anxiously waiting for him to come. These kids are amazing!( And so are their parents!!) I know that God has his hands on each and everyone of them. I will never understand why?? Why our David? Why your Maria? I will pray for all of you always!! I hope this New Year is filled with laughs, hugs and many MIRACLES!! God Bless! Robert, Lora Taylor and our beautiful angel David.

Anonymous said...

Ed and Megan,
My thoughts and prayers are with you and your family at this difficult time. My niece, Katie passed away of this monster in April 2005. We live in Pa., so my niece was treated by Dr. Reggie Jacaki also at Children's of Pgh. She is a wonderful person. Also, my sister's pastor talked to my niece about heaven and seeing relatives and the people she loved and knew who had passed away. She told her this about a week before she passed away and Katie was no longer afraid...I pray for a miracle for you and your family..if you would like to keep in touch, my email is luteri@adelphia.net..God Bless you all! Maria is a beautiful child! I update on a few websites with these situations and I always hope to see miracles!! Take care!
The luteri family

Michelle said...

It was so great to see you all over Christmas! Prayers and positive thoughts and everything still aimed your way.

Here's another positive thought while I'm thinking of it--the daughter of a friend of a friend just got the same diagnosis you and Maria are dealing with. Because of your generosity and willingness to share, these folks are now looking into St Jude's. This might never have happened if not for you two and your honest approach to all this.

We won't stop hoping and praying. But know you've made a difference in one family's ability to cope through the holidays. It made a world of difference for them to know there's a place where doctors understand that it's not just a procedure and not just a patient but a child.

You're always in our thoughts and prayers!
~Michelle

Anonymous said...

Happy New Year! I pray for your family.
I also check the website on a daily basis, hoping to see that someone has given the light that needs to be at the end of the tunnel! God Bless you Maria, Miracles do Happen, WE need to stay strong and have FAITH!

Anonymous said...

Hi this is abby from st. mary's school in michigan. last year i heard about maria and it broke my heart. luckly my mother knows one of you relatives, Kit. I really thought to myself what can i do. i told my class and they seemed to get really into it too! they felt connect to maria because many have little brothers and sisters and they imagined if that happened to them. my class and i decided to do a bake sale. many people came we sold balloons and many yummy bake goods. what seemed the best was that childrens parents brought in money not to buy anything but just to help! by the beginning opf the day we had 200 dollars! we didnt stop there we sold more for lunch and got about 100 dollars! my class still wanted more so we raffle off a basket of yummy treats and sold many tickets. My principal gave all the church money to her too. My mom bought 50 bracelets and i gave them to my class mates. I just want to say even though people dont know you or maria personalty. You have touch so many lives and so has maria.

with much love and prayers,
abby st.mary's 7th grade

Anonymous said...

Ed and Megan,
I don't know you, but a friend shared the e-mail with me. I am a cancer patient myself. Currently, I am ongoing treamtent for renal cell carcinoma. Although I have a long road ahead, I have been improving slowly with the help of Dr. Nemeh. From what I have read, it seems you are from the Cleveland area. Would you consider going to see Dr. Nemeh? I am a current patient and a member of the team that is involved in the healing services. I have seen many miracles over the past year and hope that you would be willing to stop by the office or come to a healing service. I would be happy to pay for the office visit if money is an issue. I just hope you would consider it. If you have any questions or would be willing to meet with the Doc, call my cell phone at 440-796-0664. Either way, I will continue to pray for all of you.
God Bless,
Keith Huber

Beth said...

For all the families who have posted here and have angels in heaven already, I am truly sorry for your loss and God bless you for sharing your sad experience here so as to help Maria. To Ed and Megan, I pray for your continued strength and I pray for your miracle, Maria.

Jim & Ellena said...

To Ed, Megan, Maria and the boys,
We continue to keep you in our thoughts and prayers each day. Praying that 2007 is a year of miracles for you.
Jim and Ellena Muraco

Anonymous said...

Dear Ed and Megan,
Your story about Maria is an inspiration to me. I volunteer for Hospice of Western Reserve and I also volunteer for the Good Shepherd program at St. Ladislas in Westlake. I help with the 3-6 yr.old children. I have two suggestions for talking to Maria about death. The first is an illustrated book called The Next Place by Warren Hanson. The second is Dougy's Story in a book by Elizabeth Kubler-Ross called The Tunnel and The Light. The story is her response to a 9 yearold boy dying from cancer. It is based on Eccesiastes 3:1-8. My prayers are with you. I would be happy to share my books with you. My phone is 440-617-9336.
God bless you and your family.
Pat K.

Rhonda M said...

Ed, Megan, Maria, and family-

I have followed your story since the beginning. Both my husband and myself work at Cincinnati Children's Hospital Medical Center and we found out through one of your cousins that was consulting with my husband. My prayers are with you daily and your strength and faith have been continued inspiration to everyone you reach! I am now dealing with my father and father in law each diagnosed with different cancers during December 2006. It sometimes is very difficult to stay strong, but Prayer is comfort and believing that miracles exist gives us strength to carry on. I am so very glad you shared wonderful loving holidays and created many memories and thoughts to cherish! Wishing you many many more together! God bless you, stay strong and continue to believe!

Blessings and prayers!
Rhonda M
Cincinnati Ohio

Anonymous said...

God has granted your family another beautiful Christmas together, and now may He grant you peace in everything you do. He will guide you in your decisions as to what Maria's next treatment will be. How wonderful to know that Maria will continue to have the highest quality of life remaining to her! You were hand-picked to be her parents, and God is very pleased with you. Please continue to believe that ANYTHING is possible with God.I pray for your strength to continue through this ordeal, and as always, for Maria. God bless and keep you always.

Anonymous said...

Dear McNameras,
For Christmas I received a shirt from St. Jude Children's Hospital along with a "Prayers for Maria" bracelet from my cousins who used to live in Avon Lake. I wear them constantly and they are reminders for me to keep praying for a miracle for Maria. I check your site almost daily and you are always in my prayers. God bless you!
Emily from Manchester, NH

Lynne Duban said...

Dear Ed, Megan, Maria and boys,

Our family been praying for you all since learning of Maria's illness. My brother, Ted Gordon, first told me about your family and your crisis and Deb keeps me informed regularly.

I have two boys ages 8 and 4 and cannot begin to imagine that I could posess 1/1,000,000th the strength and Faith that you have, if I were in your shoes.

My boys and I pray for your family and for a miracle for Maria every night at bedtime. Gabriel, my 4-year old, says the dinner Blessing each night and always asks God to help Maria to get better.

You are an inspiration to all parents to cherish each moment with our children. God Bless you all and may God Bless Maria with another miracle soon.

She is truly God's creation.

With our love and prayers,

The Duban Family

Anonymous said...

Hey Maria
We love you so much! you are such an angel!
Love Kati Corbitt

Anonymous said...

My thoughts & prayers are with ALL of you. I check your updates on a daily basis. You have shown my family true Faith. God has chosen such loving & caring parents for Maria. How hard this must be for all of you, God has a wonderful plan for all of you. It might be hard to see now but in the end we will all see through this! Stay strong, God's love never fails! He is always with you!
As a hospice nurse, I can fully understand what your family is going through, the ups & downs, tears of sadness & joy, etc. Just cherish all of your moments with Maria.
I was so happy to read in your last update....“extra month or two” of life. If you add all the days up of being in a hospital as a patient and not spending time being a child with your family, is there really a gain?...How nicely said!!! You are exactly right...KUDOS to YOU!! You do have Maria's best interest at heart!

Please reassure Maria (when she asks about death & missing her Mommy...this broke my heart) Let her know Heaven is a beautiful place & she will be able to look down on her Mommy EVERYDAY! Let her know that their are many 'special angels' to help take care of her, there will be no more pain & suffering, no more needles etc....

'LOTS OF BLESSINGS FOR THE NEW YEAR, WE WILL CONTINUE TO PRAY FOR YOU!!

Joanne Szwarc said...

Dear Ed, Megan and Maria, my continued prayers are with all of you each day. We are the ladies who sent Maria the Brian's Buddie sheep. We thank you so very much for helping us. We were able to send over $800.00 to the Brain tumor society for research in Brian Montgomery's name and we are so proud. Maria and you both are at the very top of our prayer chain. I always have believed that ALL THINGS HAPPEN FOR A REASON; we might never understand why; I am sure both of you say that each day; but GOD IS GOOD AND LOVES US ALL. PLEASE know that prayers continue to go out to the Lord for Maria many times during the day. Peace and comfort to all of you. Joanne, aka blanket and buddie lady in Rootstown, Ohio

Diane said...

Diane Koch (Laura Kerwin is my daughter) please look at this product it may help. It is helping others with cancer in stopping growth of tumors. Xango is now approved by the American Cancer Society & these 2 sites are by well known doctors.

www.choices411/drtootla.html

www.goxanthones.com/demo

If I can answer questions or get you more information call me at 989-245-3701 or at Laura's 440-933-3250. I have the product and tons of information and access to people who know much much more including Dr. Tootla.

My prayers have been with you and Maria for months, hang on!

Jesus loves you and so do I!
Diane Koch

Anonymous said...

Dear Ed and Megan,
I found your site through a friend who lives in your area. I've been following your every post. It's amazing the strength you show in each and every way. I feel Maria's bubbly personality just by what you post. Maria is always in my thoughts and prayers. She's a lucky girl to have parents with your love and devotion. Good luck with further appointments.

-Take time to get a good laugh, after all it is the best medicine.

timosh1313 said...

Hello Megan and Ed,
I have recently been thinking about "out of the box" treatments for Maria. I remember reading an article about the use of a device called "cyberknife" to alleviate/reduce symptoms of Parkinson's disease. I checked the internet and discovered that this procedure was approved by the FDA in 2001 and is performed in 6 facilities in the country. It is now being used on tumors that are considered "inoperable". The list includes pancreatic, liver, lung, and a myriad of brain tumors including gliomas. The most experienced cyberknife treatment center in the world is at Stanford Hospital where it was first developed. The website address is www.stanfordhospital.com (look for cyberknife under the neurosciences option). Georgetown University hospital also has an informative section on the cyberknife on their website [www.georgetownuniversityhospital.org]. I have no idea if Maria would qualify for this procedure and I have no idea what the success rate is but since it is painless, non-invasive, and done on an outpatient basis it might be worth investigating. I will continue to pray to Our Lady of Knock Ireland that she will guide you in your search.
God Bless, Colleen O'Shaughnessy from St. Raphael parish

Anonymous said...

Have you heard of the Chinese and Tibetan healing method called Qigong (chigong)? I have heard that those Tibetan monks used to heal tumors and other diseases. For some reason someone told me about this the other day and I had to share it with you. Also, researching it for you, I suddenly came accross this Cancer specialist and he happened to be in MD Anderson in Houston... Coincidence? Here is his information, I hope it's helpful. I hope you find some hope through this alternative approach. God bless you.

NQA Professional member: Michael Powers

Michael Powers

Email: mikelpow@swbell.net

Work: 713-723-8393
Home: 713-723-8393

Teaches qigong professionally.
Is willing to travel to teach workshops.
Works as a qigong healer.

Specializes in Medical Qigong for Cancer.

Michael Powers provided the following self description:
I teach Cancer patients and teach them special techniques for healing mind and body. I also teach MQ classes and Tai Chi at the M.D. Anderson Cancer Center in Houston, Texas.

URL:www.michaelpowersbodywork.com

I found him here:
http://wiki.nqa.org/665 (national qigong association).

Anonymous said...

Dear Ed, Megan & Family-

I do not know why your family has been chosen to go through this, but you are an inspiration to all. I have two young children and everytime I come to your website it makes me pause, it makes me cry and sometimes it makes me afraid; but, more than anything, it makes me take an extra moment to kiss my daughter or to laugh at the food that my son has thrown all over the kitchen floor. Thank you for teaching me to cherish those moments.

Knowing that you are from the Cleveland area, I had just assumed that you had been to see Dr. Nemeh or that you had heard of him. In moments like this, I should never have assumed. So, upon reading two previous entries which made mention of Dr. Nemeh, I also encourage you to see him. I not only received a miracle, but have seen too many others to not believe . . .

Maria and your family continue on in my prayers!

Jennifer said...

Here is a website that claims a 2-year-old patient had complete remission from the same tumour Maria has: http://www.elbolsonpatagonia.com.ar/a/pabluster/articulos/glioma.htm
They used an alternative therapy of Iscador/Mistletoe.

I will continue to search and talk to people about possible cures and, most importantly, keep praying. I heard about your family from a friend of mine who works with your sister at Progressive. Maria is a beautiful little girl and God's little blessing. I hope your family has a miracle this year!