Today has been another trying day as Lucy continues to battle vomiting. A safe estimate would be 20 times in the last 48 hours. Of course our first fear is a shunt failure. I have checked, rechecked and checked again the list of symptoms the doctors gave us to look for that would indicate a problem with her shunt. Nothing seems to fit, though. You would almost have to see it to believe it, but she will vomit and then immediately return to playing, watching TV or laughing and talking. It's almost comical. That being said, she is still vomiting at an unusual rate and that has the doctors concerned. Today and yesterday she was delayed in receiving her radiation by 2 hours due to the fact that they could not get the vomiting under control so that she could receive her "sleepy medicine."
So tomorrow around 10:45 she will have a CT scan to check for any blockages or other problems with her shunt. I would like to ask that you pray specifically that everything will be all clear and that the vomiting will subside now that they are doing spine and brain radiation boosts. In theory once she is no longer receiving whole head and whole spine RT, many of the yucky side effects will start to subside. Who knows....maybe she will even get some of her appetite back. I am also anxious to see her energy return. She just seems so run down lately. Hardly any stamina these days. I know this all part of the RT, but I'm ready for our upcoming break from treatment.
Lucy has been prescribed a drug called Periactin. It is an appetite stimulant that is used very often in children and has proven to be quite effective. The nutritionist is really pushing us to give it to Lucy, but we are a little hesitant. First of all, even if I give it to her and she wants to eat, everything tastes gross right now. Lucy says that all the food she tries tastes yucky. That was an expected side effect of Radiation. Another reason I am hesitant is that due to her age, she is one of the last children to receive RT each day. I think it would be inhumane to give her an appetite stimulant and then keep her NPO until 4 or 5 each day. So...we have made the decision to hold off on the medicine until the end of RT. After she has completed this phase of treatment we will begin to give it to her and pray that we can pack on about 10 pounds before we start Chemo. I know that this is wishful thinking, but it would be wonderful to plump her up before Chemo takes it back off of her again.
As always, though, Ms. Lucy is a fighter. She's so brave and strong. Here is a picture of Lucy on her bike that is WAY too small for her. We took her to get a new bike that same night and a HELMET. Please don't fuss. I promise she wears one. Seriously...the child has a shunt. Not a smart move to do anything these days without a helmet. I'd have her sleep in one if I thought it was necessary. We just had to buy one and make some adjustments to it so that it would fit around the shunt and not hurt her. I just think its great that she even wanted to ride.
I am praying now for the vomiting to stop. I also set my alarm for tomorrow at 10:45 to pray that the scan is clear. I love her Jessie t-shirt. My daughter would love that! We love Jessie and Bullseye! I am also praying that you will have peace of mind from all of the worry/anxiety. May God wrap his arms around your family and give you strength and comfort that only He can provide. He is in complete control of the situation. He knows the plan He has for your family. God bless Lucy Krull! She is an inspiration. You are an inspiration. You are a WONDERFUL mom. Your kids are very blessed to have you. I am a better person for reading your blog. Thank you for sharing your life with us.
ReplyDeleteWhat a beautiful little girl! I think she’s perfect! We are still praying for your family everyday! Glad to see you on facebook also! Prayers! Prayers!
ReplyDeleteKate, my heart breaks for you as I read your story. Your family will be in my thoughts and prayers tomorrow and for the days ahead. Lucy is adorable and looks like a fighter! Keep strong. xx
ReplyDeletePraying for that sweet girl. When our Sarah was in the hospital with side effects from the wicked chemo prior to her bone marrow transplant, her vomiting was so pitiful. It just plain broke my heart. I am praying it will go away SOON for your Lucy!
ReplyDeletePraying for you, Lucy, and your sweet family!
ReplyDeletei am praying for the vomitting. set my alarm to pray for the scan.
ReplyDeletei love you.
jennifer w. thompson
Lucy is such a sweet, brave, beautiful little girl! Continuing to pray for her each and every day. Hoping the vomiting will cease, and Lucy will be able to eat to keep her strength. I will be praying and sending many positive thoughts to you tomorrow, as sweet Lucy has her CT scan. Asking that God will continue to bless your whole family, and to rid Lucy of this monster cancer. Every time I see a picture of her smiling, happy face, my heart melts. I am sending her many hugs and butterfly kisses!
ReplyDeleteA Mom-Mom in NJ XO
Poor Lucy! Praying for her and will cover her in prayer tomorrow.
ReplyDelete<><
I pray that Lucy's vomiting stops. I cannot imagine vomiting that many times in 48 hours. Poor thing. And you & your family will be in my prayers tomorrow during her CT scan. I pray that everything is clear. Please keep us posted.
ReplyDeleteRecently at my church we have been praying for certain things and using different names of God when we do. I looked up the Hebrew name for "God is our Healer" to declare over Lucy. I put a link for the names on the blog I wrote about her. http://shalasfreshstart.blogspot.com/2011/04/prayers-for-lucy.html
ReplyDeleteI also put a link to your blog on my Facebook so that my friends could pray too. Just know that you have many people believing with you.
Be Blessed.
I am 25 years old, currently going through chemotherapy. There are days when I feel very down and don't know how I'm going to make it through the duration of my treatment but then I read about how brave and strong your little girl is and it gives me hope and courage to be that brave and strong, too. I hope this doesn't sound totally weird but I felt compelled to comment tonight though I've been reading for some time. My thoughts are with you and your family!
ReplyDeleteKate, I am praying for Lucy to receive relief from her vomiting and I want to tell you that I believe you are doing the right thing by witholding the appetite stimulant until RT is over. I agree with you, it would be hard to give it to her and then she would be so hungry waiting all day for RT. Less than 2 weeks to go, YAY! Praying for the CT scan to turn out ok this morning also. Love, hugs, & prayers to you all!
ReplyDeleteshe is an amazing little girl!
ReplyDeletePraying for all of your family! I just wanted to let you know that our daughter was on Periactin for more than a year (prescribed when she was 15 months) after she developed an aversion to food (associated it with pain after many misdiagnosed ear infections). It worked wonders in that our off the charts little one was finally in the 10th percentile on the growth chart. That said, it did not make her "that" hungry. It can have the side effect of sleepiness, so in the beginning, we gave it to her right before bed, though given that Lucy cannot eat during the day, I wouldn't recommend that. Alli didn't ever seem starved for food, but would suddenly try eating, which for us was huge. We had to increase the dose to twice a day, and started giving it morning and evening ~ sleepiness never seemed an issue with her. While it didn't seem like she ate that much, we noticed a big difference on our "off weeks" (to avoid resistance, she would be on for 4 weeks, off for 2). I pray that once Lucy starts the Periactin, you notice a difference in her appetite. I also pray that the vomiting ceases and the remainder of RT goes as smoothly as possible.
ReplyDeletePraying for you guys today! I hope the vomitting goes away and the shunt is A-OK! I also am praying for the 10 pounds to be packed on soon and very soon! (((HUGS))) GO LUCY GO!
ReplyDelete~Heather in OH
Prayers going up from NC...for Lucy, for you to have peace and confidence in your decisions, for doctors to see what they need to see and do what they need to do and for a miraculous healing and recovery for all of you!
ReplyDeletePraying for all of you! Praying the vomiting subsides and the scans today will be completely clear. Praying for energy for Lucy and for you. Praying for sunshine and beautiful days ahead for your family.
ReplyDeleteJust as a side note: my daughter was prescribed Periactin as an infant, due to Failure to Thrive (wouldn't eat ANY FOOD, only wanted to nurse) and was only 14lbs at a year. The first couple of months on it she gained 6lbs! Praying for your ten pound weight gain too! With God all things are possible:-)
My husband has had a shunt since September and I can sympathize with you on the emotions you go through while wondering if it is working or not. We are especially sensitive since he had so many problems with his shunt in the beginning. Every time he acts a little different, says something strange, or mentions a headache, my mind starts racing. But I keep reminding myself that God loves us and wants the best for us. At our church's Maundy Thursday service we were given a makeshift brick and were asked to lay it at the foot of the cross. This represented anything in our lives that was standing between us and God's love. The brick we left there that night was representative of our fears. That night I realized that God's love for us was so much bigger than a shunt or a brain tumor and that if Christ can overcome death, then certainly He can protect us from this. And because He loves us so much, certainly He will.
ReplyDeleteMy continued prayers to you.
so praying for the scan and the vomiting to get stopped, for strength for this whole family to surround you, love from Colorado
ReplyDeleteI am praying for Lucy God please let Lucy quit vomiting and get back on track with things for her treatment to get her better God Bless!!
ReplyDeletePraying hard that the vomiting will subside. My daughter is seven and weighs less than 35lbs. She is taking a daily dose of Periactin for her migraines. It has helped the headaches more thank I could have imagined. It has also helped her allergies as it is an anti-hystamine. The appetite stimulant has also been a good thing. We started out giving it to her twice a day, but found that it makes her very sleepy. We stopped the morning dose and now she just get a dose right before bed.
ReplyDeleteWe will continue to keep her in our prayers.
Periactin was a miracle drug for my daughter who was called "failure to thrive" at one point since she was so tiny. She had to take shots for a while to encourage her growth (79 lbs and 4'6" at the start of high school!) which helped but the docs decided to stop those due to other issues. Finally a very smart nurse suggested Periactin as an appetite stimulant since she did not "feel" hungry. When that started to work she "felt" hungry for the first time in her life and is now a 5'4" healthy young woman - she gained weight and grew in a phenomenal fashion and was no longer teeny tiny and best of all, I did not have to remind her to eat and boy was that wonderful. Best of luck with your decision; praying for you, as always
ReplyDeleteMy 3 year old daughter, Nola, has had a shunt since she was four days old. I too know the fear associated with shunt failure. You and your family are in my thoughts and prayers.
ReplyDelete-Desiree'
www.nolagracyn.blogspot.com
praying (((HUGS)))
ReplyDeleteyour sweet girl is such a trooper!