Paypal update

Hi,

We seem to be having some difficulties with the paypal donation link, so please bear with us. Hopefully the kinks will be worked out and it will be up and running within a few days. However, the Smiles for Sophie account still receives checks by mail. We appreciate the continued support and understanding.

Sarah

Smiles For Sophie

I just wanted to let everyone know that Ed McNamara (Maria’s dad) and his friend, Kevin, have created a new website for Sophie that is a little easier to access and has all the current information including updates, visitor posts, donation information (with a paypal option that can accept credit card donations), pictures, etc. The website is smilesforsophie.com. Once you access the site, you can either subscribe (right hand column of the page) to receive updates when we post any new information or simply visit the site whenever you wish. One difference with this site is that if you wish to post any messages to Sophie, Emily, and Marc, you will need to click on “comments” after one of the updates. There you can type in your message, however, it will not show up immediately because it has to be reviewed by the website manager. The reason being that, unfortunately, the McNamaras found out that since the website is accessible to all, they were getting some inappropriate messages from people. As the website manager I will be staying on top of the webpage posts and will check it daily so as to quickly get your continued kind words on the page for all to see. So just bear with me. This web page was just finished by Kevin and Ed today, and we are continuing to work through any kinks, and, more than that, my learning curve with this whole process.

In addition, all of you know of Maria and her family and the battle they have fought with the same diagnosis as Sophie’s. We have had the opportunity to meet with Ed and Megan (Maria’s dad and mom), as well as the whole family including Maria and her three younger brothers. They truly are an amazing family and have been nothing but a constant source of support and information since they found out about Sophie. If you didn’t know, Maria also has a website, so please visit prayersformaria.com. There you can follow her story and add her to your prayer lists as well. God has two very special little girls to look after, and every additional prayer is yet one more that will hopefully lead to a miracle for both of our families.

Again, thanks for all you do to support Emily, Marc, Sophie, and Sarah through these trying times. We cannot thank everyone enough; please know that we truly appreciate every kind word, every gift, every prayer, every gesture, and every thought. We believe that together we will make a difference.

Sarah

Thank You for Your Prayers

I wanted to first start by saying, thank you so much for your endless prayers and encouraging words for Marc, Emily, Sarah, and especially Sophie. As you know, Sophie began going through the initial phases of her care at St Jude's today. I talked to Emily and although her "extra" time is scarce, she knows you all appreciate any updates she is able to give. I told her I would take care of posting the following information. We have been working for a few days on getting this benefits account set up to help defer Sophie's expenses and Marc was able to complete the final steps over the phone today. I know many of you have been asking how you can help so if you would like to donate, below is the account information. Emily and Marc will be able to use this account in any way they need to support Sophie and of course appreciate everything. They have a long road ahead of them, but we are never going to give up hope and we continue to pray everyday for our precious Sophie's health and happiness. Again, we appreciate all your prayers as well and the continued kind words.

Sarah

Please makes checks payable to:

Smiles For Sophie
Acct# 984621378
c/o National City Bank
19292 Detroit Rd.
Rocky River, OH 44116

Day 1 of Hope

I just spent 15 minutes typing an update and the computer lost the connection...gotta love wireless! In a nutshell, arriving and registering was utterly exhausting, but we are starting to get used to the surroundings. There is NO snow in Memphis, the sun was shining and it was close to 70.

We met with the doctor and he assessed Sophie, confirming without looking at the MRI or doing one of his own that she certainly was presenting the "normal" symptoms of a brainstem glioma. Bummer...we were hoping Cleveland was wrong! He gave us the rundown on the "protocol" and said radiation would probably start early next week. He was a kind man, but it was disheartening to hear him say, that they would like permission to have a first look at the autopsy for research reasons...we hope that autopsy doesn't have to be performed!

We are a little worried about Sophie. She progressively got more "wobbly" as the day went on and was extra clingy to Mommy, which is difficult for everyone She ate two huge plates of spaghetti at dinner (the steroid causes increased hunger) and then came up to get a tub and threw up her dinner of noddles, applesauce and cucumbers. It's painful for us to watch her...she had long noodles coming out of her nose, and she tells us, "don't look at me!"

We have a very busy day planned for tomorrow starting at 6:00am for a PET scan. Sophie won't be able to eat after 10:30pm, and I know that will be rough. We will have to be creative in finding ways to distract her.

I would type more, but now is my chance to research the different clinical studies available while Sophie sleeps. I'm hoping to be able to give another update tomorrow. Thank you again for all the kind thoughts, words and prayers. Many people want to donate money and we certainly appreciate your kindness. My sister is working with the bank and will be getting that info on here soon.

To end on a good note, Sophie met her first friend Jessie at dinner and they colored together. Actually Sophie picked the colors and Jessie drew the lines. Jessie is 7 and was so kind to Sophie, who isn't very confident in her coloring now that she can't stay in the lines, due to the weakness in her right arm. The people are nice here, although it's hard to ignore the reasons why they are here. Say an extra prayer so that we have the strength to take one day at a time.

Off to St. Jude's

We are packed and ready to go. Now we anxiously await the phone call which tells us what flight we will be on. Baby Sarah will be staying here at home with Aunt Sarah and Uncle Matt: at least for the first week. Then we are hoping to be back together as a family in Memphis for the following 6 weeks. I will post our "new" address tomorrow since so may people have asked for it.

We finally talked with Sophie about where we are going, and she was not too excited. We decided we won't use the word "hospital" anymore; it's just St. Jude's. Little Maria came over tonight and told Sophie that she has friends at St. Jude's, so hopefully Sophie will see that it won't be such a scary place.

We explained in the simplest terms we could, what is going on inside her body. Although she hasn't asked many questions, we knew that she knew more than we had officially told her. We thought we should get things out in the open. She was pretty quiet, taking it all in, in her usual Sophie style. I'm sure the questions will come soon.

Sophie has been pretty amazing as far as her symptoms go. Her coordination is much better, but her smile is still gone and although she is very tired, she is having a rough time sleeping. The steroid makes her quite irritable, and she still wakes frequently throughout the night, sometimes wetting the bed. Try convincing a girl who has been potty trained for so long to wear a pull up - not easy! We were able to take the bandages off the mediport spots and she was able to get in the tub for the first time in days, and she said laying down on her tummy in the water made her tummy feel better, which was a positive thing.

We appreciate all the kind words, prayers and gestures. Church was a little tough this morning, hearing Sophie's name read with the petitions, but a good feeling to. We leave this in God's hands. Keep the prayers coming, we are hoping for a miracle.

How did we know?

Many of you are asking, “How did you know?” What happened? I will try to give you he condensed version. Tuesday morning, Sophie threw up immediately after eating her breakfast, this was the 5th time in about 10 days, but since she had no other symptoms and the vomit looked like mucous I chalked it up to drainage… We cleaned her up; she said she felt better, so we went to preschool. When I picked her up from school, her teacher said she seemed a little, “off” something else we had been noticing but again, chalked it up to growing and what we thought might be considered “normal” for a three year old. Hindsight is oh-so-wonderful, because looking back, there were many symptoms (which again we didn’t think were that out of the ordinary) that started showing in November which progressively got worse as time went on. Thing like getting out of bed many times each night (probably due to headaches which she didn’t know how to verbalize), the occasional clumsiness, not wanting to dress herself anymore, moodiness, not wanting to participate in her activities, wetting the bed a few times, and most recently drooling, and on Saturday, not being able to smile on her right side. This past Monday Marc took the girls out to breakfast so I could get a break for president’s day and when they came back Sophie’s knees and pants were all wet from the snow. When I asked what happened, Marc said she fell and was having trouble walking. So with all the events that happened from Saturday (smiling) to Tuesday at school we immediately called the doctor, went to our pediatrician who took notes and did an exam. He said he was extremely concerned, and sent us to the hospital ER for a CT scan. 15 minutes after the scan, the neurosurgeon came in and said the news was not good, and gave us a “not 100% diagnosis” of an intrinsic tumor and then ordered an MRI to be certain. You know the rest of the story. All the signs we didn’t think were that big of a deal proved to be indicators of the tumor – which we are told is probably slow growing due to the gradual onset of the symptoms. From what I have bee told, most children with a brain stem glioma wake up one day, and have symptoms so severe that there is no question that something is SERIOUSLY wrong. I think it’s positive thing that Sophie’s tumor is most likely slow growing.

Our plan is to head to St. Jude’s sometime next week, get more tests, and begin a clinical study with radiation. IN addition, we will be starting some natural remedies in an effort to shrink the tumor as fast as possible.

I’m on a mission and I’m focused. Your kind words and prayers have helped. The tears don’t fall as easily. Yes I get sad, and still ask the question why. But that won’t help Sophie. We are lifted up in prayer because of all of you. I feel hopeful now that we have a plan, a plan that will give us more good days with Sophie, and possibly help any other families that may be given the same diagnosis. We are overwhelmed by the number of emails and posts, and offers to help. We appreciate those of you who offer to use your medical connections and experience to give us options. We are looking through everything and keeping an open mind, but are taking one step at a time. We thank God for all of you, our friends and family, for being here to support us, pray for us and help us in a million different ways. We are so grateful to all of you, keep the faith, and keep the prayers coming. Life is so precious.

How is Sophie?

So how is Sophie? She seems to be doing better. Still a little off balance and her muscle control is weak on her right side. However, she is doing much better than she was on Wednesday at the hospital. Friday was a challenge because Sophie was not so happy about the continuous poking and prodding going on. She had a medi-port placed in her chest (so that medicines and sedation could be administered without putting the IV in every time) yesterday which required general anesthetic, and although she did fine, the recovery room and coming out of the anesthetic was difficult. She slept a lot yesterday and complained that the incision hurt her, and was still anxious to get the IV out of her hand. But this morning, after a pretty good night’s sleep in Mommy and Daddy’s bed, the difference is promising. She is still taking the steroid by mouth to help with the swelling on the brain (another blessing is that the swelling was minimal despite the rather large size of the tumor – 2 x 2 x 1 inches). And we are hoping to start the radiation this week at St. Jude’s - which we are told should make Sophie pretty close to the Sophie we once knew…the one she was this past summer.

Sophie is Home!

Sophie is home! The doctor released her from the hospital Friday evening, and she said over and over,” It’s so great to be home.” And of course we are glad to have her home!

There is hope – definitely hope. In the last couple of days, I have seen many examples of God working in our life that affirms this hope and is helping us focus on what we CAN do.

It’s been a blur since I made the first update, so I will try to get you up to speed. My typing is not the best, and I can’t promise you I will proof this, so bear with me! After meeting with the oncologist at Rainbow Babies’ and learning our 3 options; 1- do nothing and let the disease run it’s course, 2 – receive radiation at Rainbow Babies, 3- participate in a clinical trial at a hospital in the PBTC or COG, we have made our decision to participate in a study. The specific study has not yet been determined, because there are a couple that Sophie might be eligible for, and we want to pool all our resources to make the best choice.

Ironically, and I would say coincidentally, but there is no way this is coincidence, we have met another family in Avon Lake who has a 7 year-old daughter, Maria, who was diagnosed with this same horrible cancer last April. You know how rare this particular cancer is, (this family has only met ONE other family with the exact diagnosis during all their treatment and research) so you’ll probably have as hard of as a time as we did wrapping your arms around this - the family (which we had not met or heard of until this) literally lives 200 yards from us – in the cul-de-sac behind our house! Many, many people are convinced that there is something in the environment that played a role…I’m not there yet. I believe this is a gift from God. Today, Maria is beating the odds…she was told in November that she may not see Christmas, and last week she was at school.

Ed and Megan came to our house last night, and shared many, many stories, research, experience and insights regarding their journey with this disease. What a blessing! They couldn’t say enough about their experience at St. Jude’s. We had heard after the diagnosis from many, many people what a wonderful place St. Jude’s is; but we also heard that it was nearly impossible to get into. (Ed was able to give us specific phone numbers of their doctor when Marc first talked to Ed on Wednesday, and Marc made the call to him, while I contacted the brain tumor coordinator.) Shortly after leaving a message, the doctor himself called us back, and told Marc “You are in, and I can get you here on Monday – Feb 25” Another gift from God! Still wanting to do research…just to cover the bases, we told him we would get back to him (not sure what we were thinking)! Anyway, Ed and Megan reaffirmed that St. Jude’s was the best place for us and Marc emailed the doctor last night to see if the offer was still good. (He just came down here to tell me he heard back, and we are going!)

What does Sophie have?

Dear Family and Friends,

I can't even begin to write this email with a dry eye, but I know that there are many of you who care and want to know.

After a CT scan on Tuesday and an extensive MRI on Wednesday, our sweet little Sophie was diagnosed with an intrinsic brain stem glioma which appears to have developed in the pons area but has spread to the entire brain stem. To you , and me, this is medical jargon. What I did hear is "inoperable, fatal, worse case scenario, terminal, no cure, and average life expectancy of 12-14 months". You can do the research and read about the prognosis.

I know we have to be strong, but it is so hard. Marc told the doctor yesterday after hearing our options and a repeat of the prognosis and expected stage of events, "You know Doc, Sophie is the most beautiful little girl, and so damn smart, and she had so much to look forward to...why us"?

That's what I wonder...I know God has a plan much bigger than mine, but that just isn't enough to comfort me today, tomorrow and in the next weeks and months.

We are at Rainbow Babies and Children's Hospital in Cleveland...a good hospital, but we are still researching options to find out if there is hope; I guess there is always hope...that's what the oncologist said anyway...as long as you believe in that higher power.

I'll try to keep everybody updated somehow about where we go from here. Please say a prayer...if not for healing,for peace and comfort for our family.

XOXO
Emily