Today was a pretty smooth day until this evening, but I will get to that. We started the day at 2:30am. Sophie got up for her usual hourly waking, and I decided that we would have a little snack since she wasn't going to be able to eat. We had a mini picnic of toast, juice and pineapple. She seemed shocked and certainly excited that I was offering her food in the middle of the night - probably because I usually beg her to please go back to bed. She then went back to bed, and after a few more wakings actually slept in until 7:00am, which was a record!
We had our first appointment at 10:30, so before heading over to St. Jude's, we packed up everything at the Grizzlies House and prepared for the transition to the Ronald McDonald House. Sophie held up pretty well with the hunger, and we kept her on a steady diet of jello, Popsicles, and apple juice right up until 11:00 which was the time limit for clear fluids. It wasn't until 11:30 that she started getting particularly fussy, but everyone else was too - we all wanted lunch!
At 1:00 we headed over to the radiation clinic. The sedation and films were uneventful. I still hate seeing her put to sleep, but am getting used to the process at least. I met with the radiologist while Sophie was sedated and while Marc moved all of our luggage to our new home and went to the 45 minute orientation. The radiologist is a very kind man who explained everything and answered all my questions. You could tell he wishes there is more he could do for Sophie. He told us that after tomorrow we will have 30 more days of actual treatment! The countdown begins! We came home with a huge bag of medicines and medicine schedules. I'm hoping that Sophie cooperates. She has been pretty remarkable so far, but adding 4 more medicines is enough to make my stomach turn!
Sophie had the same hard time during recovery; whining and only wanting me. Marc met us at the hospital and he went to the recovery room alone while I waited outside to see if Sophie would respond better to him if I wasn't there. He said she didn't stop crying for me and at first she didn't even want the male nurse, who was holding Sophie, to hand her over to him. (Does that sentence make sense?) I feel bad for Marc;he feels helpless. I know he wishes that Sophie would go to him, and so do I. Pray that we can somehow overcome the effects of the steroid so that Sophie and Marc can have the fun and trusting relationship they once had.
After the day at the hospital, Sophie came home and ate a huge lunch and seemed satisfied. We took a short nap together, and then woke up to an exciting mail day. Sophie enjoyed opening the packages she received and it warms my heart to see her excited about something. It truly makes her day and means so much. She has seemed so sad and miserable lately, and when she does smile or laugh it makes me forget about everything - if even for a second. We too appreciate all of the cards and wishes that many of you are sending. We read each one, and try to focus on the positive thoughts and scriptures that many include. Again, we thank you for the prayers and thoughts.
Later this evening, Sophie wanted some fruit and we gave her some watermelon, berries, pineapple and strawberries. She ate them okay, but shortly after became extra clingy and said she was tired and her tummy hurt. Then the salivating began followed by vomit, vomit and more vomit. It scares me to see her so scared. You can tell she tries so hard to fight the urge, but just can't, and consequently she is wiped out afterwards. We got her to drink some ginger ale, and offered her some crackers or toast, but she refused. I did get her to take a couple bites of her applesauce to get her medicine down. We laid down together until she fell asleep. She was pretty lovable and said some pretty funny Sophie things while we laid there.
Marc headed over to the Ronald McDonald house with Sarah, since we gave up on Sophie sleeping with Marc after last night's failed attempt. (Just as I walked out the door at 10:00, she started crying for me.) We're hoping that this will give Grandma and Grandpa a night to sleep, and Marc really wants to help with the kids, and Sarah certainly loves her Daddy. Pray that they might get a restful night's sleep and Sarah will adjust to her 2nd new sleeping environment in one week.
Sophie is sleeping now, and I'm planning to have another picnic with her around 2:00am because tomorrow is yet another day of no eating. We have a very full schedule. Eye appointment, PT and OT appointments, clinic appointments, and her first radiation. Please pray that all goes well, and beg for that miracle.
We had our first appointment at 10:30, so before heading over to St. Jude's, we packed up everything at the Grizzlies House and prepared for the transition to the Ronald McDonald House. Sophie held up pretty well with the hunger, and we kept her on a steady diet of jello, Popsicles, and apple juice right up until 11:00 which was the time limit for clear fluids. It wasn't until 11:30 that she started getting particularly fussy, but everyone else was too - we all wanted lunch!
At 1:00 we headed over to the radiation clinic. The sedation and films were uneventful. I still hate seeing her put to sleep, but am getting used to the process at least. I met with the radiologist while Sophie was sedated and while Marc moved all of our luggage to our new home and went to the 45 minute orientation. The radiologist is a very kind man who explained everything and answered all my questions. You could tell he wishes there is more he could do for Sophie. He told us that after tomorrow we will have 30 more days of actual treatment! The countdown begins! We came home with a huge bag of medicines and medicine schedules. I'm hoping that Sophie cooperates. She has been pretty remarkable so far, but adding 4 more medicines is enough to make my stomach turn!
Sophie had the same hard time during recovery; whining and only wanting me. Marc met us at the hospital and he went to the recovery room alone while I waited outside to see if Sophie would respond better to him if I wasn't there. He said she didn't stop crying for me and at first she didn't even want the male nurse, who was holding Sophie, to hand her over to him. (Does that sentence make sense?) I feel bad for Marc;he feels helpless. I know he wishes that Sophie would go to him, and so do I. Pray that we can somehow overcome the effects of the steroid so that Sophie and Marc can have the fun and trusting relationship they once had.
After the day at the hospital, Sophie came home and ate a huge lunch and seemed satisfied. We took a short nap together, and then woke up to an exciting mail day. Sophie enjoyed opening the packages she received and it warms my heart to see her excited about something. It truly makes her day and means so much. She has seemed so sad and miserable lately, and when she does smile or laugh it makes me forget about everything - if even for a second. We too appreciate all of the cards and wishes that many of you are sending. We read each one, and try to focus on the positive thoughts and scriptures that many include. Again, we thank you for the prayers and thoughts.
Later this evening, Sophie wanted some fruit and we gave her some watermelon, berries, pineapple and strawberries. She ate them okay, but shortly after became extra clingy and said she was tired and her tummy hurt. Then the salivating began followed by vomit, vomit and more vomit. It scares me to see her so scared. You can tell she tries so hard to fight the urge, but just can't, and consequently she is wiped out afterwards. We got her to drink some ginger ale, and offered her some crackers or toast, but she refused. I did get her to take a couple bites of her applesauce to get her medicine down. We laid down together until she fell asleep. She was pretty lovable and said some pretty funny Sophie things while we laid there.
Marc headed over to the Ronald McDonald house with Sarah, since we gave up on Sophie sleeping with Marc after last night's failed attempt. (Just as I walked out the door at 10:00, she started crying for me.) We're hoping that this will give Grandma and Grandpa a night to sleep, and Marc really wants to help with the kids, and Sarah certainly loves her Daddy. Pray that they might get a restful night's sleep and Sarah will adjust to her 2nd new sleeping environment in one week.
Sophie is sleeping now, and I'm planning to have another picnic with her around 2:00am because tomorrow is yet another day of no eating. We have a very full schedule. Eye appointment, PT and OT appointments, clinic appointments, and her first radiation. Please pray that all goes well, and beg for that miracle.
11 comments:
I am exhausted just reading about all that you must do in a day! I hope Sophie's tummy rests easy tonight. What a great Mommy to make a fun little middle-of-the-night picnic when you would much rather be sleeping. There is no "normal" timing when your child is sick, is there!?! Sophie's clingy-ness sounds draining, but what a special bond you are forging, too. She must feel so very safe lying there beside you! You and Marc are being called upon to do some extraordinary parenting; hang in there!
Still praying,
Paula Koziol
Hi Sophie and family -
I was so sad to hear about your news. I cried throughout the day(s) when I heard. I wish that neither Sophie nor Maria would have to suffer with this horrible tumor. I will pray for Sophie's miracle, just as I pray for Maria's.
If you are able after St. Jude's is finished, I would like to extend an offer for you to come to Anaheim, CA to Disneyland. I am able to get three people into the California Disneyland Park for free and I get 50% off of the Disney hotels in Anaheim and would love to invite you and your family to take Sophie to Disneyland.
I am sure you will be able to do Make a Wish, like Maria did, but if you find that you need a separate more personal trip and wish to come to California, please feel free to contact me.
May God Bless you Sophie!
Maria's Aunt Eileen
eileen.mcnamara@disney.com
I sit here and cry and smile at the same time. Poor Marcus. How many hundreds of times over the past thirty three years have I told the story to Marc and Leslie about how Marc NEVER, from the age of three months on, wanted ANYONE but his Dad and his Grandpa Quayle. Leslie was happy anywhere, but Marc was his Fathers son and that was that. Kids.....they will break your heart every time. I am so glad the war has begun. I am praying continually.
Sophie,
Colin (3yrs. old) and Katie (5yrs. old) wanted me to send you a message to tell you that they are thinking about you, and hope you have a good day. I hope you don't mind, but when we pray for you, EVERYDAY, Colin calls you "Soap-ie" because he can't say Sophie too well. We hope your new medicines help you get better, so that one day all of us (Mommy, Daddy, Baby Sarah, Colin, Katie,..)can goto a park together! Tell Grandma Susie and Grandpa Frank that they can come too! We love you and hope that you feel better soon. Give Mommy and Daddy a hug for us. Love, The Riley's :o)
Marc, Emily, Sophie and Sarah,
Just a note to wish you the strength and miracles that you so deserve, as Sophie enters a new phase of her journey. Hopefully the radiation treatments will offer some calmness to the challenges of the last week with the steroids. We think of you often and appreciate the updates. Marc, we know what a loving and proud father you are. Your passion and determination is no doubt a source of strength that Sophie has inherited and it will serve to help her battle through these challenges. Keep the faith! You are receiving a tremendous amount of support and prayer!
Jeff & Susan Miller
Emily-
Thank you for the update. Even though I am so far away, these updates help me feel so close. Ironically, I feel that you are "helping" me through this more than I am helping you! Shouldn't it be the other way around?
Marc,
I can only imagine how hard it is for you to watch your daughter go through this and at the same time, feel so helpless. I really believe that Sophie will be back to her usual, daddy loving self in no time. I watch you with her in awe...you are a great, loving dad and she adores you. Although she may not be expressig it at the moment, you are number 1 in her eyes, you are her daddy, you are her hero.
Hang in there, both of you. I love you!
We so appreciate your updates, as I can't even imagine how exhausted you all must be. We're praying for you as the treatment begins, and looking forward to Sophie's miracle!
Kim, Chris, Grace, Rea, & Kayla
...I no longer count on my own goodness or my ability to obey God's law, but I trust Christ to save me. For God's way of making us right with himself depends on faith.
Phillipians 4:9
Sophie ~ my son Bradley has a joke he wants to tell you:
"How do you clean a tuba??"
"With a TUBA toothpaste!"
We hope that brought a smile to your beautiful face! Take care sweetie! We are constantly thinking of you!
Dear Sophie, Emily, Marc and Sarah: all of you continue to be in our hearts and prayers every day. Emily, how difficult it must be for you to be constantly keeping us informed of what you are all going through. Please know how much we all appreciate your updates on dear Sophie and all your family. We pray for your continued strength and that miracle of miracles. God Bless, Bill and Renee Dent
As I told Maria's family, I have seen God work in mysterious ways and believe in miracles. You're in my prays. God Bless.
Hope. Faith. Love. And Prayers.
We cannot tell you how much we appreciate the updates on Sophie...we especially love the picture posted today...she is just beautiful and the pudding just makes it! You are all in our thoughts constantly as we selfishly look forward to your selfless posts...you are both amazing! You are definitely being tested for some reason but don't ever think you're failing as your strength, stamina and faith will pull you through this!
We continue to pray for you all,
Tim and Barb Fahey
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