Eating though, and weight loss, that's a different story. I went to bed last night with a near migraine from stress and the tears that I shed yesterday. This is literally eating me alive. I feel as if I am watching my baby starve to death and there is not much I can about it. Except this stupid feeding tube. With it, I can actually CONTROL something in our lives again.
But is that what God wants for my baby? I am asking for wisdom so that I can see past my own fears and trust that He knows whats best. I am praying that God will give the doctors wisdom as well. I am praying that the answer will be crystal clear today, with absolutely no room for doubt.
I am praying so hard for you. I do not know what you are feeling, but I did watch my mother go through the same thing a few months ago. If it were my child and the medical professionals were telling me that with treatment, she would survive, I would put the feeding tube in. That is such a hard decision to have to make. Praying today for you to find the strength and wisdom to make the right decision for your family and your beautiful little girl.
ReplyDeletePraying for wisdom for the doctors today, and peace in your heart with whatever you decide. We are praying for sweet Lucy!! <3
ReplyDeleteHugs and continued prayers!
ReplyDeleteBlessings,
Amy
I can only imagine how difficult this is for you... Just remember if you decide to go with the feeding tube, it's not forever...just for a season. Right now, Lucy needs all the nutrition she can get to help her get stronger and continue to fight off the cancer and maybe this is just what she needs to get her those proper nutrients.
ReplyDeleteI'll continue praying for you as you make this tough decision: that God will speak clearly to you and you will have peace no matter what decision is made.
The answer will be clear. You are so strong and have done an absolutely amazing job making the right decisions for Lucy thus far so don't doubt yourself Momma! God will make it clear and guide you just like he's done so far. Praying for you all.
ReplyDeletePraying God gives you and Lucy's doctors the answer today. Hang in there!!
ReplyDeleteKate, I have been reading your blog and want to share that while the unknown about a feeding tube is scary, it will be a lifesaver!! My son had to have g-tube placed in March and while I was scared and didn't really want to think about my child having to get his nutrition through a tube, it has made a significant difference in his health and I am soo thankful to God for that! Once you get used to it, it is like it is something that you have lived with all along and it becomes normal! :) Sending your family strength, love and peace at this special holiday time. Merry Christmas!! You are amazing! Kerri
ReplyDeleteKate, I've bee a "lurker" on your blog for a long time. Lucy's story is touching, and my thoughts and prayers are with your family. I feel like through your blog, I can see some of the thoughts and feelings that my parents may have gone through with my older brother (now, happy, healthy, in his 40s with two little boys of his own), when he was battling cancer at 3 years old, years before I was born.
ReplyDeleteOn the subject of the feeding tube, although it is a pain in the neck, and feels like it is invasive, you need to remember, it is TEMPORARY in most cases. It may be what Lucy needs to turn a corner and get back to living the life that a child her age should. We will be praying for you and the doctors today. Stay strong!
~Beth CT
Praying
ReplyDeleteI have been following your blog for several months, and amazed at how strong not only Lucy is but also you. You have come through this horrible experience with such a positive outlook that your story has touched so many lives.
ReplyDeleteI know that a feeding tube is a scary thing. I work with many kids with feeding tubes, and they do not have to be a permanent thing. Many times it helps a child get over a hurdle, and gives the nutrition the child needs to continue to grow and recover. A feeding tube also takes the stress out of how much and what she eats and allows eating to be a pleasurable activity again. I would encourage you to continue to work with Lucy eating by mouth in a fun way, and hopefully she will not need the tube long.
I hope your family has a wonderful Christmas and that 2012 will be a new, fresh start.
I'm praying that today is a day that the Lord carries you.
ReplyDeleteIf Lucy does get a feeding tube, I'll pray that she becomes strong enough to want to eat on her own again. Her poor little battered body needs rest to heal and it can't rest if it is consuming itself. It desperately needs fuel to do that. Hopefully it will be temporary and a stop along the way that you will look back on and say "Remember when..." Healing takes time. God doesn't rush. Please make sure to help your own wounds heal as well. You are no good to Lucy if you get sick yourself.
Melissa
My thoughts and prayers are with you and the doctors as all of you make the decision that will propel Lucy forward.
ReplyDeleteThinking of you all <3
ReplyDeleteI've read other blogs of parents in similar situations. Many of them fought the feeding tube, but were almost always glad they did it. Praying for you and the doctor's to make the right decision for Lucy. Elaine
ReplyDeletePraying for you as you make the decision that is best for your daughter and your family.
ReplyDeleteOh Kate,
ReplyDeleteI feel so bad for you and Erik having to make these decisions. I am praying that God will give you wisdom, the right path to choose.
Praying for Lucy to gain weight!
<><
Kate, I have been following your dear Lucy's journey almost from the beginning. You, Lucy,and your entire family are amazing. As a nurse I am often a witness to pain and suffering both physical and mental. Often it is the family that we must comfort more than the patients, with a lack of control being the one thing that brings families the most fear and frustration. Do not be afraid of placing a feeding tube for Lucy. A few days of discomfort will bring you much peace of mind. Lucy will be able to eat when she wants to instead of meals, calories, vitamins, etc becoming a daily battle. The tube while scary at first (as is anything new that we don't quite understand) will provide her with the nutrition she needs while not loosing her desire to eat. Do not think of it as a step back, instead see it as a step forward for your little girl, helping her grow into the young woman you know she will be. Kate never forget what an amazing MOM you are, GOD truly shines through you.
ReplyDeletePraying always for you and yours,
Andrea
Praying for wisdome & a clear direction for the doctors and for your family today :) ALL the kids performed wonderfully last night at the Christmas program! So happy that Lucy was able to be a part of it :)
ReplyDeleteDear Kate,
ReplyDeleteWhat a difficult thing to have to think about! I am praying for God to give the doctors wisdom and you strength to make it through this decision. I can't imagine what you are feeling. We, as moms, take on so much pressure and stress. Seek God for all, as I know you do, and he will continue carry you through this. He has never left your side! Praying for Lucy to be healed and to eat better! Sending prayers and love your way!
I am praying you will find peace with a decision. We had to make this decision for my mom. It was great for her, and she ended up having it pulled after a couple of months.
ReplyDeleteKate, don't know if this helps. Been reading your blog since last spring. A family member of ours had neuroblastoma. A tumor in his abdomen near his kidneys. He had a feeding tube for about 8 months following his treatment. He no longer has one. He just turned 5 two weeks ago. Sounds like you are making a good decision. You are a good mom. You inspire me constantly. Hang in there.
ReplyDeletePraying with all our heart for you and the doctors to come to a clear and concise decision concerning the feeding tube for Lucy. Have followed your blog since the beginning of Lucy's battle and like you we pray for her to begin to gain weight and feel stronger daily. My mother's heart goes out to you and Lucy.
ReplyDeleteIn Christian Love,
Mother to 2 and Grandma to 5
While the words "feeding tube" has such a negative stigma, it really shouldn't, especially in Lucy's case. You know it would just be temporary unlike most cases of feeding tubes that you are probably thinking about. It probably sounds way worse than the IV form of nutrition that she was receiving before, but it actually isn't. It has way more benefits and far fewer risks than the IV nutrition. I know you probably feel like you are having to take a step backward if she has to get the tube but maybe it is the step she needs to help her move forward. Praying for clarity and wisdom for you!
ReplyDeleteAAwwee Kate....I'm sorry such huge issues and decisions are surrounding your final week before Christmas!! Please know this "Stranger Friend" is thinking of & is praying for Lucy, yourself & Lucy's medical team. Thank you for the updates! Will look later to see if you updated from today.
ReplyDeleteTake Care of you,
Love,
Jenn
You are a strong woman, you can do this. You've made it this far don't quit now.
ReplyDeleteI'm sorry Lucy and you have to go through this. If only, if only, if only. I have to remind myself over and over and over that I can't control what is happening to my husband. It's not my battle; it's the Lord's.
ReplyDeleteI pray that God will give you, Erik, and Lucy's doctors the wisdom you need at this time to make the decisions that will align with God's will and plan.
I know the anxiety that feels as if it is eating us alive, night and day. Oh, to be free of it. It's excruciating and debilitating and unending. I'm praying that our God of the impossible will bring you comfort and give you his perfect peace, Kate.
I hope that y'all were able to gain some clarity after meeting with Lucy's doctors/team. I am hopeful and prayerful that whatever decision y'all make willl help Lucy get stronger so that she can continue fighting. I haven't commented in awhile, but I still check your blog each day. Please know that I never stop thinking about and praying for y'all!!! Much love from GA.
ReplyDeleteYou will know what to do. The doctors have been there before and will know what to do and Lucy will gain weight and feel better. God will know what to do. Praying for you all.
ReplyDeleteKate you do not know me but I have been following your blog and praying for you and your family for months. Please know that we will continue to pray. Your strength amazes me and I can only imagine how you must be feeling. Please find some peace from knowing the prayer warriors are hard at work for you and your family.
ReplyDeleteKate, I don't know you or your family any other way but through this blog. I Find you as a very strong person physically and mentally! I don't know what you are going through but all I can say is you give me strength to move forwards and live my life to the fullest! and I thank you from the bottom of my heart for that! I also would like to say if a feeding tube will help maybe it will help to the point that removing it (hopefully shortly afte) is a mildstone day!! :) I am praying for Lucy!!
ReplyDeleteHi Kate,
ReplyDeleteI just wanted to share with you something that helped our son gain weight...he was already on the thin side, but after months of nausea & no appetite he lost 10 pounds. The GI doctor recommended that we try "Benecalorie" (3oz containers of a liquid-not much of any taste- that has 330 calories, 7grams of protein & you mix in with food or drink)...we tried various ways of mixing it & finally landed on making milkshakes with it. He actually loves it and asks for it!! He has gained back 8 or 9 pounds so far :) I am praying for all of you...for Lucy's appetite & healing, as well as wisdom to make the right choices & that those choices will be made very clear to you.
In my prayers,
Shay Sepko
Praying for a good doctor appointment.
ReplyDelete