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.
16 comments:
Our thoughts and prayers are with you and your family. I pray for strength for all of you during what must me the most difficult of times. Miracles do happen and I will be praying for yours.
Emily, thank you so much for updating us and a special thanks for letting us know that you're seeing more of Sophie's smiles! I'm so happy that you're all going to be spending some time in the sunshine state. Just opening the curtains in the morning and seeing a sunny day, feeling the sun on your skin will make you all feel better emotionally,physically, and spiritually. I'm praying for your miracle every day and I'll never stop. Enjoy the sun and the beach and show your girls the wonderful birds we have down here!.Love, aunt Lynne
God bless you two mothers sitting side by side getting your facials. Sitting in a restaurant with your two perfect daughters. Keep strong and enjoy every moment of every day. Your daughters are so fortunate to have you with them as they fight this battle.
Wow. You guys are so strong. We are praying for Sophie's miracle. Thank you so much for updating, as we love hearing how Sophie is doing!
Emily,
Thank you for updating the website. I check every day for a new post-even when there isn't an email from Sarah announcing the update! I know how tired I am at the end of the day, so it is a miracle that you even wake up at all once laying down with Sophie!
I was so happy to read you were able to get out to the spa with Megan. You both deserve that so much! I took Lanie there for a mom-daughter manicure and it was so much fun to see her face light up! I am sure Maria aand Sophie were just as thrilled.
Enjoy your time in Florida. We will pray for sunny days and lazy afternoons and warm breezes-and moments when you don't have that sinking feeling in your stomach-just pure joy at the sight of your beautiful family. We are still counting on that miracle...
Love,
Paula
Dear Emily,
So glad to hear Sophie's smile is returning and her cute "Sophie sayings" are back! Enjoy every minute of your time in Florida. You are blessed with a very loving and supportive family. We pray for Sophie everyday and believe in her miracle. Thank you for reminding us all to live every moment to the fullest. Stay strong and push those fearful thoughts out of your mind. We will continue to visualize Sophie and Maria's complete healing.
DEAR EMILY, SO GLAD YOU UPDATED; I KEEP A GOOD EYE ON SOPHIE'S SITE. I PRAY FOR HER AND YOUR FAMILY EACH DAY. WHAT A WONDERFUL MOM YOU ARE TO HER; GOD KNEW WHO TO GIVE SOPHIE TO! I AM THE LADY WHO MAKES THE BRIAN'S BUDDIES THAT WE SENT TO SOPHIE. WE CONTINUE TO MAKE AND GIVE THEM TO CHILDREN WITH CANCER; ESP. BRAIN TUMORS. WE PRAY THAT ONE DAY THIS TERRIBLE DISEASE IS NO LONGER A PART OF OUR WORLD. GOD BLESS AND COMFORT TO YOU AND YOUR FAMILY. TAKE CARE JOANNE SZWARC, ROOTSTOWN, OHIO
Relax! Enjoy the sun! Have a wonderful time!
Emily,
It so nice to hear things are getting better. I know the power of God, hold on to your faith. Remove all doubt, and God will see you through. I to visualize Sophie's healing. Have a safe and blessed trip to Florida. I work with Marc, and we are all praying and believing God. I thank him everyday, regardless of our circumstances, praise him as the song say's "any how". Be Blessed.
Love,
Anita
Emily,
I understand why you can't, and really appreciate that you were, able to post. Have a wonderful time. Frankie and I and our church continue to pray for all of you.
Doreen Bobey
To those closest to Sophie,
I don't think it can be overstated the importance of taking good care of yourselves. Seek professional counseling, support groups, etc. - whatever you need to do to be sure that you can withstand this battle. Nobody in such a challenging situation is without need of such help. For all I know you are already doing these things, but...(sorry, I can't help it, I'm a social worker, it's what I do).
Hi,
I want to wish you the best of luck with sophie. We pray for her every night. Wish you the best of luck!
~Craig Family
Hi Sophie and Family,
This is my first time visiting YOUR page......one of my first thoughts was "what a beautiful name", my second...."what a beautiful child, just like my Sarah".
I am here for strength for you and your family, to offer hope for Miracles, because I do believe in Miracles, they do happen!!!!
To you Sophie.....I am going to send you some photo's of Sarah. She is a strong little, beautiful young lady just like you are. Maybe we can become Pals. Sarah would love that. What do you think?
May all the good spirits less you little one and Sarah and I wil pray for our new friend, Sophie.
Much Love and Respect,
Patti Newman and Sarah
www.carepages.com
sarahshope
I've been thinking of you all this week in Florida. I hope that you're having a grand old time and that Sophie and Sarah have been in the water all day every day! God bless your little family and Sarah's new baby too! Aunt Lynne
I pray for Sophie everyday, as do others on our staff at the Marriott. We wish for miracles and smiles to come your way.
Hi Sophie and Family
Welcome to Quilts Of Love !
We are so happy you have joined our growing family
I just saw Sophie's new quilt and it is beautiful
Sending lots of hugs and prayers
Many Blessings
Chris
Quilts Of Love Angels
http://quiltsoflove.com
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