We are home and have been going non stop. Every night, I tell myself that I need to post an update, but then I get distracted by one thing or another and I don't get around to it. I can't wait any longer!
It's been awhile since Marc updated, so I'll try to remember all that has happened in the past week.
Marc left late Wednesday night and drove to Louisville and then drove the remainder of the trip on Thursday. We wanted him to beat us home since the car was literally jam packed with all of our belongings, and the plan was he would have everything unloaded and put away before he picked us up from the airport Thursday evening. That was a joke! We had so much stuff that he could barely make a dent in it....we are still putting things away! My parents and my sister brought little Sarah home to Avon Lake from Michigan on Thursday night and we were all so happy to finally be together. Sophie let my sister sleep with her, and it felt good to sleep without getting kicked in the ribs, and be waken to go potty.
Regardless of the mess we brought with us, our house looked great. Emily Stover (the wife of Geoff Stover - one of the unit managers in Marc's district) had come here and washed and changed all our sheets, decorated the house with streamers, balloons, etc. and stocked our fridge and pantry with groceries, chili and lasagna. What a nice surprise! We are so grateful Emily.
Our last 2 radiation treatments went off without a hitch. Thursday's treatment was a little emotional for me. After Sophie was hooked up to her IV, and I carried her to t he radiation table, we were greeted by the staff with balloons, a T-shirt, and presents for Sophie. The shirt and balloons said "Operation Radiation: Mission Completed" I was happy that we were just about finished with the 31 treatments and able to return home. At he same time, I was so sad about the realization that we've completed the "standard treatment" for Sophie's diagnosis and that there is "nothing more that can be done" and we are headed home and her disease is not cured. I try to focus on the positive and hope for that miracle, but when I see Sophie and her symptoms still present, I feel that sense of hopelessness and feel so helplessness. Dr. Krasin and Dr. Gajjar gave us the okay to drop the steroid completely once we went home, so we were happy about that, but also nervous.
Our flight home was great. I was able to see the difference in Sophie's personality and stamina on the flight. This time around she was asking all kinds of questions. She was very interested in the "what to do in the event of an emergency while on board card." She pointed to the person in water, and her eyes got really big when I explained to her what we should do if the plane landed in "a lake." (I didn't want it to seem too scary.)
So Sophie's personality is still good. Anxiety level is still high, and she is nervous in new environments. Her walk and weakness are still very concerning. Friday Sophie and I got on the road yet again to head to MI for my sisters shower, while Marc stayed home to work on the mess and take care of Sarah. Saturday morning, I could see that Sophie's balance was off. About an hour after waking she said she had to throw up; this was obviously scary, so we gave her a 1/2 mg dose of the steroid, and we did the same again on Monday. We will continue with the "every other day" plan for about a week and then see how she does.
Saturday morning was the Trenton garage sale and Saturday night was the Euchre fundraiser also in Trenton. Again, words seem inadequate as a way of saying thanks to all those people on Lenox Rd. who worked so hard, and gave their time, talent and energy organizing and/or running these events. Libby, Joanne, Michelle, Karen, Susie, Shelly, Sandy, Jim, Tony, Joe, Al, and Kim. Also many thanks to my Uncle Joe, Aunt Patti and Uncle Rich for their help in planning and helping out, and for their continued support. I know it was avery long day for all of those involved, and we appreciate your dedication to our cause. There were a lot of great prizes that people won and those in attendance seemed to be having a great time. I was only able to stay a short time because Sophie was at my Mom's having a high ole time with my friend Andrea, and I had to get back to put her to bed. Thank you Mr. Nick's for allowing us to use your facility and for donating the hot dogs and fries. Uncle Joe had "Smiles for Sophie" shirts made for our family and for those involved in planning the fundraisers, and many many people asked how they could get one. My sister and Andrea are working on ordering more and making them available on the website if people are interested in purchasing one. Information will be available in a future post.
Denise and Sam Irving, friends of my parents, sold raffle tickets, giving the winner a boat excursion to Duffy's in Canada for dinner and drinks for 4! We are so impressed by their generosity and willingness to share their boat with others to benefit Sophie. They raised over $4000 selling tickets. We are so grateful.
Sophie had so much fun at my Mom's playing with Grandma and Grandpa over the week end that when it cam time to leave on Sunday, she didn't want to go home with me! She asked if she could stay, and Grandma and Grandpa said okay. It was a strange drive for me on Sunday; I hadn't really been alone in a car for a long time. I thought about what a gift children are, and what a big responsibility I have. I thought about the Mom in the "Babies R Us" parking lot on Sunday (when I helped my sister return some duplicates) who was telling her little child, "Hurry up you crybaby." I tried to focus on the positive things and not ask myself the question, "Why me?"
So of course it was emotional, and easy for my mind to wander. I again realized how blessed I am, but begged God to make Sophie okay and grant us this miracle. As for Sophie's overnight stay, I know she had so much fun, and I'm grateful my parents are willing to keep helping us out. Grandpa brought her back Monday morning, and he is still here helping out while Marc gets back to work.
Tuesday Sophie had an appointment at our pediatrician for a follow up exam. He said that she did shoe improvement in her smile, but that her right side still shows weakness in her face, arms and legs. We are praying that the radiation will continue to work. We ask that you continue to pray for her; when I look at her, she is nowhere near the "back to normal" that many people told us she would be when radiation ended.
Yesterday morning was my first attempt in giving Sophie her the alternative therapies we ordered. She could not swallow the pills. I tried making a smoothie; she didn't like it. And then I tried breaking the capsules into applesauce; that seemed to work, but then she threw it all up. I told myself that I can't stomach the thought of 6 pills, and that we'll try again soon. It's so hard to know if the struggle is worth it. She did wear her thumb splint for a few hours the last few nights; we'll take a few hours, and hopefully we'll get her to wear it all night.
Thank you again to those of you helping with the fundraisers. The Trenton ones were amazing; I haven't heard the outcome of Little Gym one yet; I know they have one more night on the 27th, but gauging from the reputation of those involved I know it will be another unbelievable show of support.
We go back to St. Jude on May 2, and have an MRI and exams on May 3. Please keep us in your prayers as we await the results of our first follow up. I'm hoping to post again before then, but being back home has kept us very busy with appointments and all the responsibilities that go into running a household; something we had forgotten about in our apartment life in Memphis. I am officially way behind in my thank you notes, as the piles on the dining room table get bigger and bigger. Please know that we are so grateful to those of you who are so generous.
We are grateful to Kim Walters for organizing a list of volunteers who have graciously offered to make us dinners on a MWF schedule from now through October!
I could think of a hundred more things to write, but I think Grandpa is tiring of playing with both girls and Sarah is pulling on my legs. I started this post 24 hours ago, and if I don't post it now, I might never! I have a root canal scheduled for Thusday, so this is my last chance.
Again, we thank you for your prayers and support, and for blessing us with your generosity.
Please keep praying for Sophie's miracle.
It's been awhile since Marc updated, so I'll try to remember all that has happened in the past week.
Marc left late Wednesday night and drove to Louisville and then drove the remainder of the trip on Thursday. We wanted him to beat us home since the car was literally jam packed with all of our belongings, and the plan was he would have everything unloaded and put away before he picked us up from the airport Thursday evening. That was a joke! We had so much stuff that he could barely make a dent in it....we are still putting things away! My parents and my sister brought little Sarah home to Avon Lake from Michigan on Thursday night and we were all so happy to finally be together. Sophie let my sister sleep with her, and it felt good to sleep without getting kicked in the ribs, and be waken to go potty.
Regardless of the mess we brought with us, our house looked great. Emily Stover (the wife of Geoff Stover - one of the unit managers in Marc's district) had come here and washed and changed all our sheets, decorated the house with streamers, balloons, etc. and stocked our fridge and pantry with groceries, chili and lasagna. What a nice surprise! We are so grateful Emily.
Our last 2 radiation treatments went off without a hitch. Thursday's treatment was a little emotional for me. After Sophie was hooked up to her IV, and I carried her to t he radiation table, we were greeted by the staff with balloons, a T-shirt, and presents for Sophie. The shirt and balloons said "Operation Radiation: Mission Completed" I was happy that we were just about finished with the 31 treatments and able to return home. At he same time, I was so sad about the realization that we've completed the "standard treatment" for Sophie's diagnosis and that there is "nothing more that can be done" and we are headed home and her disease is not cured. I try to focus on the positive and hope for that miracle, but when I see Sophie and her symptoms still present, I feel that sense of hopelessness and feel so helplessness. Dr. Krasin and Dr. Gajjar gave us the okay to drop the steroid completely once we went home, so we were happy about that, but also nervous.
Our flight home was great. I was able to see the difference in Sophie's personality and stamina on the flight. This time around she was asking all kinds of questions. She was very interested in the "what to do in the event of an emergency while on board card." She pointed to the person in water, and her eyes got really big when I explained to her what we should do if the plane landed in "a lake." (I didn't want it to seem too scary.)
So Sophie's personality is still good. Anxiety level is still high, and she is nervous in new environments. Her walk and weakness are still very concerning. Friday Sophie and I got on the road yet again to head to MI for my sisters shower, while Marc stayed home to work on the mess and take care of Sarah. Saturday morning, I could see that Sophie's balance was off. About an hour after waking she said she had to throw up; this was obviously scary, so we gave her a 1/2 mg dose of the steroid, and we did the same again on Monday. We will continue with the "every other day" plan for about a week and then see how she does.
Saturday morning was the Trenton garage sale and Saturday night was the Euchre fundraiser also in Trenton. Again, words seem inadequate as a way of saying thanks to all those people on Lenox Rd. who worked so hard, and gave their time, talent and energy organizing and/or running these events. Libby, Joanne, Michelle, Karen, Susie, Shelly, Sandy, Jim, Tony, Joe, Al, and Kim. Also many thanks to my Uncle Joe, Aunt Patti and Uncle Rich for their help in planning and helping out, and for their continued support. I know it was avery long day for all of those involved, and we appreciate your dedication to our cause. There were a lot of great prizes that people won and those in attendance seemed to be having a great time. I was only able to stay a short time because Sophie was at my Mom's having a high ole time with my friend Andrea, and I had to get back to put her to bed. Thank you Mr. Nick's for allowing us to use your facility and for donating the hot dogs and fries. Uncle Joe had "Smiles for Sophie" shirts made for our family and for those involved in planning the fundraisers, and many many people asked how they could get one. My sister and Andrea are working on ordering more and making them available on the website if people are interested in purchasing one. Information will be available in a future post.
Denise and Sam Irving, friends of my parents, sold raffle tickets, giving the winner a boat excursion to Duffy's in Canada for dinner and drinks for 4! We are so impressed by their generosity and willingness to share their boat with others to benefit Sophie. They raised over $4000 selling tickets. We are so grateful.
Sophie had so much fun at my Mom's playing with Grandma and Grandpa over the week end that when it cam time to leave on Sunday, she didn't want to go home with me! She asked if she could stay, and Grandma and Grandpa said okay. It was a strange drive for me on Sunday; I hadn't really been alone in a car for a long time. I thought about what a gift children are, and what a big responsibility I have. I thought about the Mom in the "Babies R Us" parking lot on Sunday (when I helped my sister return some duplicates) who was telling her little child, "Hurry up you crybaby." I tried to focus on the positive things and not ask myself the question, "Why me?"
So of course it was emotional, and easy for my mind to wander. I again realized how blessed I am, but begged God to make Sophie okay and grant us this miracle. As for Sophie's overnight stay, I know she had so much fun, and I'm grateful my parents are willing to keep helping us out. Grandpa brought her back Monday morning, and he is still here helping out while Marc gets back to work.
Tuesday Sophie had an appointment at our pediatrician for a follow up exam. He said that she did shoe improvement in her smile, but that her right side still shows weakness in her face, arms and legs. We are praying that the radiation will continue to work. We ask that you continue to pray for her; when I look at her, she is nowhere near the "back to normal" that many people told us she would be when radiation ended.
Yesterday morning was my first attempt in giving Sophie her the alternative therapies we ordered. She could not swallow the pills. I tried making a smoothie; she didn't like it. And then I tried breaking the capsules into applesauce; that seemed to work, but then she threw it all up. I told myself that I can't stomach the thought of 6 pills, and that we'll try again soon. It's so hard to know if the struggle is worth it. She did wear her thumb splint for a few hours the last few nights; we'll take a few hours, and hopefully we'll get her to wear it all night.
Thank you again to those of you helping with the fundraisers. The Trenton ones were amazing; I haven't heard the outcome of Little Gym one yet; I know they have one more night on the 27th, but gauging from the reputation of those involved I know it will be another unbelievable show of support.
We go back to St. Jude on May 2, and have an MRI and exams on May 3. Please keep us in your prayers as we await the results of our first follow up. I'm hoping to post again before then, but being back home has kept us very busy with appointments and all the responsibilities that go into running a household; something we had forgotten about in our apartment life in Memphis. I am officially way behind in my thank you notes, as the piles on the dining room table get bigger and bigger. Please know that we are so grateful to those of you who are so generous.
We are grateful to Kim Walters for organizing a list of volunteers who have graciously offered to make us dinners on a MWF schedule from now through October!
I could think of a hundred more things to write, but I think Grandpa is tiring of playing with both girls and Sarah is pulling on my legs. I started this post 24 hours ago, and if I don't post it now, I might never! I have a root canal scheduled for Thusday, so this is my last chance.
Again, we thank you for your prayers and support, and for blessing us with your generosity.
Please keep praying for Sophie's miracle.
9 comments:
Welcome back Sophie, Emily, Marc and Sarah! We are so happy to hear you are all back safe and sound. I know it will take a while to adjust to life in Avon Lake again and if there is anything we can do please let us know. Emma really misses Sophie and if she feels up to a playdate sometime please call. Emma would love to see her.
The Little Gym fundraisers have been great and we expect another great night this Friday. There is still space available if anyone else would like to attend. Barbie and her staff at the Little Gym are amazing. They are all great people - very kind and very generous.
Sophie continues to be in my prayers every day. It is so obvious how much love you have for her and for God, I hope and pray her miracle (and Maria's) will happen. God Bless you all.
Hi,
I don't know your family but saw Sophie's beautiful face on jjsmircale website so I pulled up the webiste and have read back to the beginning of your story. I check for updates everyday. My heart aches for your family and for Sophie. I will be praying for Sophie and thinking of you guys in this long journey.
Thinking of Sophie from East Moline, Illinois
I can't fathom how you and the McNamara family are taking this in such a positive way! You have such a big burden upon you, and i feel guilty for complaining about the small things that go wrong in my life. God bless you and your family. Keep the faith!
P.S. If I could trade places with you for the root canal, I would. Of all the things going on, that's the last thing that you need to happen!
All you guys,
I miss you terribly. The house is quiet, and I wish I could be with you. Grandpa will entertain the girls. I am so grateful for the wonderful family that I love and cherish. Keep the faith. Prayers are coming your way every day, every hour, every minute.
Grandma Turner and I are in Canada and she doesn't know how to use my computer so she wants me to tell you how much we love you. She is so happy that you are all home. Give Sophie and Sarah lots of hugs and kisses from both of us.
Love Poppy
I'm glad to hear you are back home. We continue to pray for Sophie.
I just wanted to let you know that my family has kept Sophie in our prayers. I have told several of my friends and family members about Sophie, including my husband in Iraq and asked them to all pray for Sophie's miracle. My husband talked to the chaplin there in Iraq and asked him to also pray for Sophie.
I am the mom of 5 and I can't even begin to imagine all that you are going through. Please know that my heart hurts for little Sophie. I cry with every post you make and pray that God will be with Sophia and heal her. I pray that she will be on this earth to have a beautiful sister bond with Sarah and I pray that you will not have to ever feel the pain of losing your child.
May God bless you and keep you safe.
We're so glad that you had a good trip back home and that you're all back together again! Know that even though you're settling into "real" life again, and things may begin to feel more ordinary, our prayers won't stop being behind you. It's great to hear about Sophie's continued improvement!
Blessings,
Kim, Chris, Grace, Reagan & Kayla
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