Fundraiser Updates

Hi to everyone!

Well, I just dropped Emily and Sophie off at the airport to head back home to Avon Lake, and it just seems way too quiet around here now! I sure will miss them and am glad they were able to come - we had a great visit (minus the colds we managed to pass around to each other)!!

I know it's been awhile since any new posts and I am sure it may take Emily a few days to get back into the swing of things at home, but I did just want to get some information out on the upcoming fundraisers.

First, tickets are still available for the Carrabba's luncheon on June 16th. If you are planning on attending, please contact either Andrea Segedi, Patti Bozoian, or Joe Szejda for tickets (their phone numbers are on the flyer in the "Events" section on the right hand side of the page). Remember that seating will be done in 30-minute increments, so if you were planning on going with a group of people, please don't wait until the last minute to get your tickets.

Also, Sara Czarnecki, a member of the Paula Czarniecki Memorial Fund, contacted me about a fundraiser they have put together for Smiles for Sophie as well. It is a Spaghetti Dinner on June 8th, from 5-9pm at the Peace Evangelical Lutheran Church in Southgate, MI. Below is the flyer for this event.

In addition, Bob and Brett Quayle (Marc's dad and brother) have organized a Golf Scramble in Grand Blanc, MI on July 16th. This event is slighly different in that proceeds will go directly to St Jude's in order to further research in the area of pediatric brainstem tumors. The flyer for this event will be posted soon in the "Events" section.

And, the Walk-a-thon in Cincinnati, OH is coming up this weekend (see the flyer in the "Events" section). Lisa Nicholson and her crew have been working very hard to put this event together and it sounds like it will be a great one. There will be a band, many items for raffle, children's games, and of course lots of great food to go along with the walk.

Finally, we will soon be posting a link to an online store for Smiles for Sophie T-shirts and bracelets. Some of you may have already seen the T-shirts and bracelets at the Euchre Tournament Fundrasier in Trenton, MI, and with all the interest, we decided to make them available for purchase on the website. Again, this link should be coming very soon so stay tuned for more information.

Thanks to everyone for their continued efforts and extreme generosity with all the fundraising events. The outpouring of support is still so overwhelming and we truly appreciate it.

Please continue to pray for Sophie's miracle!!

Love,

Sarah

Long overdue...

I realize it's been a while since I last updated. Being home has kept us all busy. Taking care of the girls is a full time job, and when you add appointments and laundry, thank you notes, and trying to keep things under control, few spare moments remain in the day. Each night when I lay down with Sophie, I plan on getting back up as soon as she falls asleep so I can update, but usually, I don't wake up until Sophie is telling me she has to go potty, and by then it's at least 11:00, and I'm content just sleeping!

Aunt Leslie and Uncle Jacob were so generous in paying to have our house deep cleaned. It needed it, and we are so grateful. They also arranged to pay to have our house cleaned 2 more times over the next month or so. Thank you guys!

About two weeks ago, Sophie was having some bad headaches and neck aches and was throwing up again in the mornings. Walking was difficult and she seemed a little off balance. She was not much in the mood for eating, so we were concerned. We contacted Dr. Gajjar in Memphis and he recommended bumping her steroid dose up from 1 mg a day to 2mg 3 TIMES a day in order to get the swelling under control. (He still feels fairly sure that the swelling is from the radiation.) We thought 6mg a day was too drastic of an increase so we opted for 4 mg a day in an effort to control the pain and throwing up with as little side effects as possible.

Sophie's symptoms responded well to the increase, but unfortunately so did her appetite. She is back to wanting to eat non stop and when I took her to the local oncologist on Wednesday, she weighed 45 pounds. When she was diagnosed, she weighed 36. Her doctors said she looked better than she did two weeks ago, and that she was showing improved muscle strength.

We gave her the 4mg a day for 8 days, and as of Thursday, decreased the dose to 3mg a day. Her personality and mood do not seem to be affected by the increase in steroids. We have seen many smiles and heard a lot of laughter lately. (And her smile is improving too.) She did seem more tired today than she has in the past week; we are keeping a close watch on her. Hopefully she is just tired from the long walk and picnic Aunt Leslie took her on Friday!

We started back up on the chemo about 12 days ago. We didn't realize that this course would be an increase from 175 mg daily to 300 mg daily. She is tolerating it well; the only side effect she complains about it being "itchy". We are continuing to give her as much of the herbal and alternative remedies that we can get her to take.

We finally had the visit from the in-home PT who did an evaluation. I was happy that Sophie was a lot more successful with many of the "tests" than she was in Memphis. We're hoping that we can continue to strengthen her muscles through the PT and OT so as the radiation continues to work, her right side weakness will improve.

She also had her bi weekly blood draw and port flush here at home by the home health care nurse. I thought that maybe being at home would make the experience better for her, but I was wrong and quickly taken back to the Monday mornings of "port access" while at St. Jude. She was a tiny bit comforted knowing that we won't have to do this again for 2 more weeks. She still HATES it.

Tomorrow we are going to Florida to visit with Aunt Sarah and Uncle Matt. Grandpa is making the flight down with me and the girls, and Marc will be joining us on Thursday for the holiday week end. We are looking forward to being in the sunshine, and hope that the warm weather will distract Sophie from the feeling of constantly being hungry.

Thursday Megan McNamara and I were treated to a 60 minute facial, compliments of "A Time to Spa" in Olmsted Falls. We are so grateful for the wonderful gift of relaxation. We both felt guilty escaping the reality of life, if just for an hour, but are so glad we did. The spa was wonderful, and so generous. If you live in the area, and are looking for some pampering, check them out, at atimetospa.com This morning, we were able to take Maria and Sophie for complimentary mini manicures, and then out to breakfast. We enjoyed our girls morning out, and again want to thank Lisa and her staff, for their kindness.

We continue to ask for your prayers for Sophie's miracle and also for prayers for all the other kids and families fighting this battle. We have good days and bad days, but the battle definitely doesn't get easier. It's the fear of the unknown that can quickly make you shake your head after smiling in admiration when Sophie says something so cute and "Sophie-like". Just wondering how much longer I will be able to hear her say those things is enough to make my heart sink, when all I really wish I could do is enjoy her. We take each day moment by moment, because we know that when we allow ourselves to worry about the future that the feeling of helplessness sets in. We continue to ask for God's grace to help us through, as we place our trust in Him.

I hear Sophie calling me, so I'll close for now. I will try to post more often, as I know many of you anxiously await for updates. We thank you for your prayers and kind words.

Attention Runners and Walkers in the Downriver Area!!!

June 15th, 2007 is the annual Zanglin Downriver Run through Elizabeth Park in Trenton, MI. Every year, the proceeds from the run are donated to charitable organizations and this year, Smiles for Sophie will benefit from the generosity of Jim Zanglin and all the participants of this year’s event.

So, if you’re interested in running or walking this year to help raise funds for charity, please check out the Zanglin Downriver Run website at http://www.zanglinrun.com/. There is both a 1 mile fun run that starts at 7:30 pm and an 8K road race that starts at 8:00 pm, followed by a street party. The event is open to runners and walkers of all ages. The website has all the pertinent information as well as links to registration information.

Thanks to Libby Shumate and Sandi Polgar, another of my mom’s Lenox neighbors, for their work in this fundraising event. Also, many thanks to Jim Zanglin and the Zanglin Downriver Run for choosing to help support Sophie and her family with this year’s event.

Sarah

First MRI results...

Thank you to all of you who continue to pray for us.

We've had a few very busy days, and after several attempts to post, I am finally getting around to finishing. Before we went to St. Jude on Wednesday, we had a visit from a few members of the hospice team that handles this region. Obvioulsy hospice seems very premature, but these are the people who will be coming to the house every 2 weeks for blood draws and port flushes, and we were surprised to find out about many more services that they offer for our entire family for every stage of this "disease." We then went to an appointment with the oncologist here in town. We were supposed to have seen him last week, but couldn't get in until this past Wednesday. The point of our visit was to make contact with him so that we would have a local person to speak with in the event that Sophie needed care that couldn't wait for a trip to Memphis. Dr. Jacobson was Sophie's doctor here at the hospital in Cleveland when she was first diagnosed, so he had seen and treated her before. We explained to him what treatment we had completed in the past months and the symptoms we have been seeing recently, as well as the concerns we had about how she was (or was not) responding to radiation. He suggested that we increase the steroid dose to see if the symptoms would improve, and to call him for a follow up in 2 weeks after we returned from St. Jude. He was very kind and reiterated the fact that early post radiation MRIs are hard to interpret.

We left the appointment and went straight to the airport for our flight . When we met with Dr. Gajjar before the MRI and explained Sophie's latest symptoms, including neck pain, and that she threw up pretty strongly (if that makes sense) the morning we left (so much so that I didn't even want to risk her getting on the plane), and that she seems to be showing signs of hearing loss because she continually says "What?" to most things we say to her. He was quite confident that the symptoms were due to swelling caused by "angry" areas of necrosis within the tumor. He told us that in about 35-40% of children with DIPG, they don't show the maximum amount of improvement until 6-8 weeks post radiation. We had never heard that statistic before, and because he seemed so sure, we were a little less anxious during the MRI. He also recommended that we increase Sophie decadron to 1 mg daily and see if her symptoms improve.

We were able to get Sophie in for a quick hearing test before the MRI, and the results were "inconclusive" because of how Sophie's responses were "inconsistent." The test results seemed to show that Sophie has borderline hearing loss in her right ear, and mild hearing loss in her left. Also in her left ear, her tube is blocked, and she has a big piece of wax deep in her ear canal. GREAT.

The results of the MRI showed a .2 cm increase in the size of the tumor. Dr. Gajjar reemphasized the fact that this is most likely due to swelling, and not tumor growth. He said that the doctors seldom categorize a tumor as "progressive" until 4-6 months post radiation. A little reassuring I guess. He also said that the areas of necrosis looked bigger, and angrier. Good, and bad. Good because it means the tumor is dying; either because it is so embedded that it isn't receiving enough blood, or because Sophie is getting her miracle. The bad thing is, is that bleeding from necrosis can be dangerous.

So now we are home and Sophie seems the same. Really tired and amazingly grumpy from just the small increase in steroid. We took her to see a naturopathic (not even sure how to spell it) doctor today and we were told that Sophie seems to be showing high levels of mold in her body. We were given an herb and some other suggestions to try in an effort to improve her overall health so that maybe she can fight this tumor.

I still have faith that Sophie will get her miracle. Yes, my faith waivers a little when I see Sophie walk with that stiff legged walk and right hand and arm curled in. It saddens me to hear her say, "Mommy, you better help me downstairs, or I'll fall for sure." and to watch her try to roll over in bed, and she can't because she can't move her arm and leg the way she wants. Mostly I am sad for her because she has been robbed of so many things. Although she hasn't really complained much during all of this (except when it came to her port) I was so sad when she was gagging and trying to throw up with no contents in her stomach on Wednesday morning, and she turned to me and said, "I don't like to feel this way," and "Why do I have to feel like this?" To me, that isn't fair, and just like most mothers would, I longed to be able to bear this burden for her.

Oh well, hand it over to God, I suppose, because there is nothing else I can do. Right now we are desperately awaiting improvement from the radiation now that we have renewed hope. We will continue with the herbs and enzymes, as well as the energy healing. We are set to start the 3rd course of the chemo trial after being off for 2 weeks, although we just don't know if that is the right thing to do. We have until the fed ex package is delivered tomorrow from St. Jude to decide.

Please continue to pray for Sophie's miracle, and that we will continue to see improvement. I long for her to be able to walk again, and to have her smile back. Sophie is sleeping now and I should be too. I'm going to cuddle up next to my little angel.

Again we thank you for your continued support and prayers, and a special thank you to my Dad who has been a tremendous help with Sophie and Sarah. I can't imagine how we would be coping without his help, and his willingness to do anything and everything. I am so lucky and so blessed, and I know that he wishes he could take this burden from me. I love you Dad, and Marc, Sophie and Sarah love you too.

A Way to Help

Hi everyone,

We are grateful to all of you who have been so generous to us during this battle, and I just wanted to make you aware of a situation so that maybe you could help if you are called to do so.

I'm including a link to a website of a little girl who also has a DIPG. I actually had the chance to meet her and her mother the day before we left St. Jude. Her name is Dasia and despite the tumor and the prognosis she has been given, she is living without symptoms (and has been for over 2 years).

The reason I'm introducing you to her is because her family is going through some very difficult emotional and financial times...in addition to the daily struggles one is faced with when dealing with this medical battle. You can read her journal and find her address so that you can make a donation if you are willing and able.

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=dasiaatkinson

Sophie had a better day. Her smile is not as big...but not because she isn't happy or having fun. We're still dealing with the same symptoms. We are placing our trust in God. My email from the "Purpose Driven Life" website was very profound and inspiring. It reminded me that I need to keep giving this situation over to God. You can read it below.

No matter how bad things get – God is still able to bring good out of it. Today, thank God that nothing – no disaster, no delay – is bigger that his ability to turn it into something good and godly.

· Thank God and let go – Thank God that he is sovereign over your past, your present, and your future.

Give God the circumstances, disasters, hindrances, hurts, and sins from your past.

Give God your current situation, your disasters, hindrances, hurts, and sins of today.

Praise God that he can work anything in your future for godly good, that you can walk in confidence that there is nothing anyone can do to you, or anything you can do that will be beyond the reach of God’s grace and redemption.

· Look for God’s hand – Walking by faith means you see God’s hand even in the most difficult of circumstances. You trust his ability and his willingness to transform the bad into godly good. God is not limited by people’s motives. In other words, it doesn't matter why someone hurt you, God still can transform a deliberate, mean-spirited situation into something for his good.

· What will you allow God to change? – There it is: some situation, or event, or person in your life that, as far as you can tell, was “meant for bad.” How do you think God meant it for good?

Ask God what he wants you to do with this situation (event or person). When he answers, do it. We’re praying for you now.
© 2007 Jon Walker. All rights reserved.

We continue to appreciate your thoughts and prayers. Please keep praying for Sophie's miracle, and really believe and place your trust in God, because miracles DO happen.