Today was a tough day. We heard a lot of things that we didn't want to. For the next two weeks, until the radiation has time to start working, Abby is at a very high risk for a stroke or a brain bleed because of the tumor wrapping around all the vessels and arteries going to her brain. If that happens, there is nothing that they can do for her. Talk about a punch in the gut. It makes me sick to think about losing her, but the very real possibility that it may happen in the next two weeks...I just don't know. It seems like I haven't done anything but cry these last few days.
We are still waiting on several things to happen and I am very frustrated. Her biopsy was supposed to be finalized either last night or this morning, which well tell us what type of chemo she needs. She also needs to go back into surgery to have her port installed, which will allow her to get rid of the PICC line. They will also be putting in a g-tube, which will allow us to feed her directly into her stomach. Because of the radiation to her face, she will most likely get very bad sores inside her mouth and will prevent her from eating, so this will be the best way to get nutrition into her long-term. She also still needs a bone marrow aspiration to tell us if the cancer is in her bone marrow. That's where rhabdo likes to travel to first and if that has happened with Abby, the survival rate is not good. She also needs the bone scan and lumbar puncture. (Edit: everything but the bone scan will happen tomorrow.)
Radiation started yesterday. She did very well and recovery from anesthesia was much easier than the day before. They didn't do radiation on Sunday because the updated CT didn't show much growth. They decided to make her mask and do the markers so that they can more accurately target the tumor and do less damage than if they'd had to do the entire right side of her head. For her radiation, she will have 28 treatments (5 days/week for 5 1/2 weeks). She will be having IMRT radiation using protons, for those who are interested in the specific type.
Today they will also be doing several baseline tests - an echo for her heart, hearing test because there is a large possibility that her hearing will be damaged. They may also do a kidney function test.
Overall, she is understandably frustrated, as are we. She just sleeps and watches tv most of the time. She fights the nurses on everything. We walked around for a little bit after radiation, which helped her calm down. She enjoys the ambulance rides to her radiation, but not on the way back because she's still trying to wake up from the anesthesia.
It seems like everything is going in slow motion and I wish that we would get started with chemo to give us the best chance possible. There are just so many unknowns that make it overwhelming, plus the fact that this is all so new to us. I have to just keep telling myself that she will make it through, especially with so many people praying for her. We want to thank everyone for their thoughts and prayers and everything that they have done for us so far.
On the run
10 years ago
41 comments:
Katie, I won't say I can imagine how you feel because I can't begin to comprehend all the feelings you must be having. You are so right to stay positive, and so many people are praying for sweet Abby. We all only wish there was more we could do, but know that we are here for you. Tell us what we can do that we aren't. Love and prayers!!
Katie just know that we love you and we are flooding the heavens with prayers. You know that whatever is needed to be done back home im just a phone call away....and please dont hesitate to ask. Stay stong and know that we are here for you!
Katie and Leonard,
I could never imagine what you are going through or how you are feeling right now. All I can say is to keep believing and trust in the Lord. Prayers can be answered and the prayers will keep coming and never stop for Abby. She is a precious Angel from heaven and I hate to see her go through this and experience all the pain she has. Remembering you always in my prayers. Love, Stephanie Eberwein
Leonard and Katie,
Thanks for all the updates. I am so sorry to hear all that you’re going through. Please keep up your strength and try to stay optimistic. You’re in our thoughts and prayers daily!
Hanway Family,
I am Janette's daughter, Bethany. She has been keeping me informed of how little Abby is doing and gave me your family blog site to keep up with you. Thank you for posting updates. She and your family are on my mind throughout most of my days. Being a mom, I know you must be devastated. My three girls and I pray for you all every evening before bed and I go to the Father on and off throughout the day to ask that this terrible cancer be taken from her little body and that she never sees it again.
Know that there are SO many of us out here praying for your sweet girls and your family. I don't live too far from Little Rock, so if you need anything send word!
In Christian Love,
Bethany Hill
Wow-Pray that does not happen and she sails through the next 2 weeks.
Diagnosis is the hardest and longest part of this road. wanting so many anwsers so you can fight and beat the moster but being on hospital time make it soooo slow. I remember just bugging the docters alot wanting to know. hoping if I bugged him enough it would speed up the process. praying you have results soon and can start a chemo plan!
many prayers going up.
Jennifer
Katie, again, I am so sorry that you are going through this. When my sister-in-law started radiation the doctors scared them with all the potential side effects. The goods news is that she did just fine (and it got rid of her cancer). I hope Abby does too.
I am sending so much love your way. Please know that you are always in my thoughts. I hope you get some more information soon and she can get started on the chemo.
Hugs.
Katie and Leonard:
I can’t believe what has been happening to you and your sweet Abby. You’ve been remarkably brave. As you continue to deal with this overwhelming situation, I think there is a lot of truth in the saying, “take it one day at a time,” and truth in the power of prayer. I offer this short prayer to say with you now:
Come Gracious Spirit, Heavenly Dove, with light and comfort from above, be our Guardian, be our Guide, stay close by Abby’s, Katie’s and Leonard’s side.
Our Lady of Lourdes, Mother of Mercy, Healer of the Sick, intercede for us. St. Peregrine, pray for us. St. Nicholas pray for us. Live, Jesus, in our hearts forever.
Abby, Katie and Leonard,
I, too, can only imagine what you both must be going through. What a nightmare. Just know you are always in our thoughts and we send up prayers for you constantly. Try to get some rest whenever you can so you can stay strong for Abby. We love you. Aunt Rosanna
Katie, praying as hard as I can for your sweet abby..
(((Hugs))), Katie, great BIG (((HUGS)))
You have so many people praying for a miracle for Abby, myself included. Hugs to all of you.
The prayers are continuing to pour out to you. Thinking of you every moment.
Katie (and family),
I have been thinking about you all constantly. I wish that we could be there with you guys right now to kneel by Abby's bedside and pray, to give you a meal, to help w/ any laundry you need ... just to BE there for you ... I am so sorry that I can't - it breaks my heart. I want you to know how much we have been thinking about and praying for you. Abby is just so adorable and will pull through this - she is so strong!
I followed you from Lori's blog. I just want you and your family to know that I am praying for you all. I cannot even begin to imagine what you are going through at this time. God will bring you through this.
-Keesha
You and your family are in our thoughts and prayers.
My heart hurts for what you are going through. I think about you and Abby all of the time and pray for her complete and speedy recovery.
Praying for your sweet family. My family will lift all of you up continually. Please let us know if there is anything we can do (other than pray).
Praying for you and your little girl!
Prayers going up!!!
Praying for Abby. May God heal her and comfort you all and give you strength during this storm.
Sending lots of prayers your way. I am visiting from Lori's blog.
Praying for Abby and yall!!! Stay strong and Kick Cancer's Butt! Hope, Love and Prayers!
Jo Anne Kee, Texas
Came to you through Jed's Mama's blog. Praying for you guys!!!
I just read about Abby on "Our Story". I'm praying for Abby, your family, and the medical team caring for your daughter.
Just wanted you to know I am thinking and praying for your family. I read about your sweet little girl Abby from Lori Harper's page. I have 3 little girls and can't possibly imagine what yall must be going thru. I will add Abby to our prayer request list at church (which she may already be on). I intend to keep following you on here and checking to see how Abby is doing as well as you and your husband. I am sure you are becoming exhausted mentally and physically by now. Try to stay strong and ALWAYS give it all to the Lord. He will see you through this.
Praying for you & your family!!
flooding heaven with prayers!
I found your blog through another blog, and I just want to tell you that I am praying for your sweet girl.
Praying, praying, praying! I am praying for peace and comfort for Abby as she undergoes so many medical treatments, knowledge for the many doctors and nurses (medical staff) that will be administering the drugs and services to Abby and peace and comfort for you and your entire family as you sit and wait during this extremely difficult time in your lives. Know that there are many, many people praying and thinking of you each and every day. Thank you for taking time to update the blog to keep us all informed so that we can be specific with our prayers. God Bless.
Patty in California.
Praying from Illinois
Lifting Abby and your family in prayer! Blog world brought me here via a prayer request. I can't imagine what your family is going through, but I am praying for Abby and all of your family.
Hugs and Prayers
Praying for your precious little girl - I was sent from Jedidiah's blog.
I am praying for you and your beautiful baby girl!
Dear Hanway family,
I came to you through Lori Harper. My son was diagnosed with Rhabdo in his eyelid in 2005 at ACH. I understand your fear and worry. I will pray for your family. If I can answer any questions or help in any way, please let me know. I know you are overwhelmed. CARTI is a wonderful place with incredible people. We had 25 treatments, all with sedation. Lean on God and let Him carry you through this time.
I am the mother of a special needs child who recently had surgery that required a hospital stay. I have followed several blogs of mothers whose children have much more serious illnesses than my son and I was overwhelmed when I was taken to his hospital room. I just kept thinking of all the Mommys and Daddys living in hospitals with their precious children. I am praying for peace and strength for you and healing for Abby.
I found your page when I was reading another blog-- about Jedidiah. Laurie had posted about your Abby. I am very sorry, and I will pray for her and you.
Love,
Heather
another prayer warrior here for your daughter, family, and doctors.
Hanway Family: Frank and June Durbian sent out an email requesting prayer for your daughter.
Always remember..With God, All Things Are Possible, Mark 10:27.
You & your family are in my prayers.
Just stopped over from the Harper blog. I am so sorry to read that you are also facing childhood cancer. I will be lifting your family up during these critical days and weeks ahead! I cannot imagine your pain but I know a God who loves you and will not leave you as you begin this new journey.
My husband passed away on Christmas Eve and my mom was just diagnosed with emphysema and having a PET scan next week to confirm cancer, yet and still, I promise to pray for you and lift you up to my Precious Jesus!!
Blessings, Cindy
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