Saoirse is doing very well post surgery. All the teams working on her case are so pleased with her progress. The nurse even told me today that she is healing faster than any neuroblastoma resectomies she has seen. We are very happy with how quickly Saoirse is coming back toward normal. She is definitely still uncomfortable (which she should be), but her pain is completely under control. Today she even was playful, smiling and gesturing at the TV, and playing with stickers. She desperately wanted me to hold her today (which we haven't done post surgery because of her many tubes), so we set it up so that I could hold her in my lap for a while. She was in heaven, as could be told by her immediate drop in heart rate! She completely relaxed and was happy, and then perked up a bit more, snuggling in and getting comfortable. She is trying to move around more, which is good as she is still retaining some fluid which is making her puffy and moving will help to push it out of her tissues. Although her NG tube didn't come out today as we had hoped, we are almost positive it will be removed tomorrow. She really wants to eat, so we are hoping to start her doing that tomorrow as long as her tummy is ready for food. After a few days of dead-pan Saoirse, I was so glad to see glimmers of her happy self today, and hopefully we'll see even more tomorrow. She is a strong little girl, and is proving that she won't let anything get her down!
I am starting a new idea and project, and I'm slowly developing it in my mind. I am not saying much now, as more "research" has to be done, but I will be showing a sneak peak soon. It is a photography project, and Saoirse will be the first subject - more to come. That is all.
My prayers and love go out to you and your precious daughter. I have two young children that got diagnosed with type 1 diabetes 8 months apart from one another - I didn't know how or why this would happen to us twice, but I truly believe God has his reasons. My heart goes out to your husband because I know he has to be the Superman - thank God for great husbands! Your daughter is beautiful and so are you, stay strong and never let anything stop you. Good luck with your new project I look forward to finding out what it is. Annette
ReplyDeleteOur thoughts and prayers are with your family. :)
ReplyDeleteMuch love,
The Hartmans
www.littlemicah.blogspot.com
I saw your story through CNN and just wanted to come to your blog to say how impressed I am by your strength and commitment to fight together as a family. You have a most beautiful daughter (and I love her name!) and I pray for God's blessings to be with you and your family as you continue to fight. I pray there are more good days than hard ones. Thank you for sharing your story.
ReplyDeleteMuch love,
Natalee
I just saw your story on CNN.com this morning and wanted to let you know that your family is in my prayers. Glancing through your blog I noticed that you're a cloth diapering family. My husband and I are expecting our first baby in less than a month and are going to use cloth. I've shared your blog with all of my cloth diapering friends.
ReplyDeleteMay your family be blessed by the healing grace of God!
Wow. Kezia. My love to you both. To you ALL. We just don't know what life is about, or what it will hand us. All we can do is love - which it sounds like you're doing in a huge way. May you both be well soon. xxx
ReplyDeleteprayers for you both - I am currently going through chemo for Stage 3A breast cancer so I fell a connection with you both
ReplyDeletefrom what I have read you and your baby girl are both strong - stay positive. sending good energy and prayers to you
as for the photography - I to am a photographer and have been trying to document my journey
my blog is photosbydarlene.blogspot.com - if you get a chance check it out.
love and hugs to you both
I just read your story on CNN. Moved by what your family has been going through, I felt even more saddened when I read that Saoirse's cancer type is neuroblastoma. I will come back later to read more of your blog, but I wanted to write right away: I was diagnosed with neuroblastoma in March 1980. I was 6 months old. Some 31 years later, I am cancer-free, I have successful business career, and, most importantly, I am the mother of a fantastic, beautiful 4-year old little girl.
ReplyDeleteI beat this cancer, and so will Saoirse!
I saw your story on CNN.com and it really breaks my hear to know that you both are going through this. However, you have a very wonderful small family and I wish you all the best. Your daughther is very adorable. Seeing and reading your story here reminds me of my 4-years old sister that went through Leukemia Cancer which is common for infants and toddlers. My sister was very brave and battled against it but unfortunately didn't make it during this time of year. You and your family are in my prayers and hope all goes well to the you all.
ReplyDeleteI too read about you on CNN.com this morning. Add me to the list of people praying for you, Saoirse, and the rest of your family. My own daughter will turn one next Friday, and I can't even imagine what you must be feeling, watching your sweet, brave baby fighting so hard. Sending well wishes and positive, healing thoughts from Knoxville, Tenn.
ReplyDeleteThere are a lot of people pulling for your family. Keep up the good fight!
ReplyDeleteI read your story on CNN.com this morning. Thank you for sharing your story - it moved my husband and I to tears reminding us how fragile the gift of health can be. I wish the very best in health and wellness for your family. Continue to fight - there is so much to live for! Many blessing to your family and your sweet little girl - may she continue to grow stronger each day and make a full recovery. Best Wishes!
ReplyDeleteMy attempt at conveying to you the depth of my compassion feels so feeble; words just aren't adequate sometimes. Please know that this family of seven will be holding you and your daughter and husband in prayer, often, and that we are all pulling for you all. From one mama's heart to another, much love.
ReplyDeleteYou have a beautiful smile and so does your daughter-an inspiration to all. Thank you for sharing your story. My son was born the same month as your daughter. I will continue to follow your posts and your recovery. Rosemary
ReplyDeleteJust finished reading your blog - saw your headline on CNN online. I am a Mom to 2 amazing girls, one 16 and one 10 months today. My wonderful partner and I couldn't be more lucky. My positive thoughts and energy go out to your family. I can't even imagine all you have truly gone through this last year but hope you know how inspirational your postings are. I'm not a particularly outwardly emotional person but I found myself sitting here overwhelmed and at times eyes filled with tears reading your posts. I wish you all the best in your family's continued success in this battle. You are all 3 true survivors. May your fall be filled with joy and good health!
ReplyDeleteI read your story today on CNN. I hope and pray so hard for you and your daughter. May God give your family the strength to get through this and may he heal your beautiful sweet little girl. Prayers also for your remission to keep the cancer away.
ReplyDeleteYou are in many people's thoughts I'm sure and we cannot possibly know how difficult this ordeal is. I have 4 girls under 7 myself so I know how precious a daughter is. Please know we are pulling for you and your family with every prayer we have. Your strength is an inspiration as we move through our lives.
Much love.
Glenn Dickerson
My own daughter Madeline was diagnosed with Stage IV Neuroblastoma at birth, and after nearly a year of surgeries and eight cycles of chemo she went into remission...she'll be 11 years old this Tuesday, and I ended up becoming and oncology RN :)
ReplyDeleteBest wishes to your family, my thoughts are with you.
Trish Reich
I think there is a blessing in every event in our lives. I pray you find your blessing - because it is there somewhere. Love. Vaneita
ReplyDeletei just don't have any words for your story. incredible strength. i too survived hodgkins - i was diagnosed very early while in my first trimester with my first child. my tumor was also in my neck/chest but i was watched closely during pregnancy and when i was 36 1/2 weeks, delivered my daughter and started chemo and rad. right away. that was 2005. still healthy!
ReplyDeletemuch luck to you!
My best wishes, Love, and lots of prayers for you, your daughter, and your husband.
ReplyDeleteMay Almighty grant the three of you Strength, speedy recovery and lots of patience.
Hang in there.
Concerned Dad
I sobbed and sobbed after I read your story on CNN. I am heart broken for you and your family but am astonished at your strength through it all. This is by far one of the saddest things I've ever heard of but I am so thankful that things seem to slowly be getting better for you. Keep your chin up, you are role models for all.
ReplyDeleteGod bless you.
http://www.youtube.com/watch?v=H0ibsoqjPac
ReplyDeleteWishing your family strength and healing. Your daughter will be in my prayers.
ReplyDeleteYou and your family are in my thoughts and prayers. I cannot even imagine getting through what you and your husband have had to go through. What strong people you must be. I wish only the best moving forward. Thank you for posting a blog to share how you and your daughter are doing. There really aren't any "right words" to say right now but know that you are being thought of.
ReplyDeleteThanks for sharing your experience on CNN. Wishing you peace and comfort praying for your family.
ReplyDeleteYour story really hit home for me- I was diagnosed with lymphoma in November 2010, shortly after giving birth to my son in June (2010). I know all too well the challenge of caring for a baby while undergoing treatment but I can not fathom what you must be going through. My heart goes out to you and your beautiful family.
ReplyDeleteWishing you all the best.
Jen
I too saw your story on CNN. I immediately thought of a family in our area that has a story similar to your story. Your family is in my thoughts and prayers. http://www.caringbridge.org/visit/bradenh
ReplyDeleteWe read your story on CNN just now. My husband and I prayed for you in that moment. You will be on my heart, as a mom, woman and wife....
ReplyDeleteI feel your pain....I have a friend, a bright young Astrophysicist who is undergoing brain tumor treatment, here's her page: http://one-eighty-kat.blogspot.com/
ReplyDeleteHope all is well with both mommy and baby...
I read your story on CNN and couldn't help but cry. Your daughter is so beautiful and precious and it must be so painful to see her through this as well as your own cancer. I pray that your treatments will be successful and your PET scans will come back showing healthy bodies very soon so you can continue raising your sweet child and moving forward with life.
ReplyDeleteWhile reading this my 6 year old son walked in and asked why your baby was bald. After he and I read your story together he looked at his baby sister (1 yr old this past July) and he said that being a baby is too young to have to fight so hard and that its just not right.
ReplyDeleteSo, from our family to yours, we hope the battle that your beautiful little one is facing gets easier and the same for you and your husband.
My 2 1/2 year old daughter was just diagnosed with neuroblastoma late July and we are 1 1/2 month post operation. Even so, I can't even start to imagine what you and your family are going through with cancer in the both of you. All I can say is prayer from family and friends, as well as my personal prayers, got me through the darkest and most lonely times. I will pray that you and your daughter experience complete recovery and from this tragic event, your family will be blessed more than ever before. Please continue updating! I'd like to leave you with a Bible verse that helped me through the darkest times: Psalm 91.
ReplyDeleteJust found out about your story thru a list serve at ACOR.ORG for Nueroblastoma. My son is a 24 year survivor, and his 6 month old daughter is currently fighting the same. She is responding well, her mass in her tummy has shrunk 43% and they have just had the 3rd cycle of chemo. If you wish you can email me at kmblaker5@hotmail.com and I will try to get back to you when I can. I drive truck so my internet time is limited. I will pray for you both.
ReplyDeleteMichael Blaker
I'M A 911 DISPATCHER AND I SAW YOUR STORY ON CNN.COM. I HAVE BEEN READING YOUR BLOG OVER MY 12 HOUR SHIFT AND I AM REALLY TOUCHED BY YOUR STORY. AS IF YOUR OWN JOURNEY HAS NOT BEEN AMAZING ENOUGH, YOUR DAUGHTERS JOURNEY AND HER HAPPY DEMEANOR DESPITE IT ALL SERVES AS AN INSPIRATION FOR ALL. I WISH YOU EVERYTHING OF THE BEST AND HEALTH AND STRENGTH AS YOU AND YOURS GO THROUGH THIS.
ReplyDeleteI read your story on CNN and was deeply touched. I have a son who is 15 months old, and couldn't imagine what you and your husband, as parents, would be going through to see your child in pain. I wish her a speedy recovery and glad to know that you are in remission. You have a wonderful family and a very devoted husband. Take care.
ReplyDeleteI just read your story on CNN, wow, you have a beautiful daughter and I wish you both a speedy recover through this awful journey. You and your daughter are so strong, I'll keep you and your family in my prayers.
ReplyDeleteFrom one Massachusetts girl to another....I am sending positive thoughts and prayers all the way from Los Angeles. There is a bond between mothers and I feel so deeply for you and your daughter. Keep giving it your East Coast fighting spirit. From all your postings, it is so obvious that you are a beacon of light in this life. The energy of all your well-wishers is so powerful. Ok, rambling, sorry.
ReplyDeleteAs a mother of two my thoughts and prayers are with you. I am at a loss for words as they seem so trite. Wishing you both a speedy recovery and a long, happy, and healthy life.
ReplyDeleteI am very sorry to see you going through such a pain and especially the little one, I cannot really control my emotions now. Wishing you both a speedy recovery and a long, happy, and healthy life. Please be strong and I know you have a loving husband, who is definitely a Super HERO. My prayers are with you and your family.
ReplyDelete