First off, before I start into my entry and update on the past few weeks, I would like to share a link to an article regarding new findings on DIPG. It makes me happy to see that some research is finally being done to study this tumor and get more information so that one day, and hopefully not in the too distant future, there will be answers, there will be options for children suffering from this dreadful disease, and there will be a possible cure. Here is the link to the article. As a side note, if you are wondering what all the talk is about #kerascrusaders and the facebook site started by Brian Phirst, who's son was diagnosed with cancer, it is about raising awareness for childhood cancer. Kerascrusaders is the team name we picked for her. It is a virtual run that anyone can do who does any kind of aerobic activity and wants to post their miles or minutes for children to support them. There are no monetary donations regarding this particular event, just the hope that our children will be cared for and receive much needed funding for research into these deadly cancers. I know that with the Gabriella Miller kids first research that was approved and signed by President Obama, events like this and other forms of raising awareness really make a difference!! If you want to get involved with the fb event and haven't already, you can send me a msg or fb msg me and I can help you get involved. I am passionate about changing the current status of DIPG from 0 % survivers to curable!!
Here's the link to the article:
http://www.curebraincancer.org.au/news/1044/multiple-breakthroughs-in-childhood-brain-cancer#.U0T0__ViBoI.facebook
Here's another you tube clip that gives more facts and insights into DIPG. It's around 7 minutes, but for those of you who have wanted to know more about the type of tumor Kera has and the statistics, it does a good job explaining it. I haven't shared a whole lot of information about Kera's tumor on this blog, I guess mainly because it is such a devastating tumor, and I don't like to dwell on the negative stats and devastation regarding this disease. I haven't wanted others to lose hope for Kera's fight. But this is the reality of the disease. I also know that there is always hope. There are always miracles. God has his hand in Kera's life, and if she is to live here longer on Earth, then she will. I am grateful for finding a woman who has been studying natural and eastern medicines for 20 years who is currently helping to treat Kera. I feel like if nothing else, she has given me hope again. I have decided to stop the chemo and go the natural route. The doctors say there is no cure, there is no hope, there is no chance of survival, but there is always hope. Nevertheless, there does need to be more done to fight pediatric brain cancer. Here is the link:
http://www.youtube.com/watch?v=zwYYtw1sgow&sns=fb
Now for the update. Warning, this isn't going to be sugar coated. I am going to state the facts, and those aren't always easy to hear. These past few months since late January when Kera's symptoms started to return have been SO ROUGH!! Each week there are new symptoms, and each week there is less mobility, less talking, and more of her body giving out. Right now Kera is not able to speak much at all. She tries to talk, but it's very hard to understand her at this point. She is mostly communicating by writing. I hope and pray that her vision remains intact, as well as the use of her right hand, as I cannot imagine if she is unable to talk and see or write. I don't want her to be unable to communicate her thoughts to me. I ask for everyone's prayers that she remains able to communicate with us somehow. She has also recently in the past week or so, stopped trying to walk. Her trunk and upper body have gotten weaker, and she isn't much less steady. Her legs still have some strength to them, but because her body in general is weak, and she can't balance on her own, she has stopped being able to walk. I want more than anything to believe that she will be able to do these things again here in this life. I know if she is not able to do so here, she will in the next life. I also know that because of our Savior and the resurrection, her body will be restored to her and she will run and jump, talk, walk, and do back flips and tumble just as perfectly as she used to. I can't wait to see her do all of that again.
Even through all of the deterioration of her physical abilities, her mind is just as sharp as ever. She enjoys playing games, and most of the time still wins them all! I was so happy to spend a wonderful Easter Sunday with her today. Friday afternoon her teachers from school brought over some amazing Easter baskets (laundry basket sized) filled with toys, games, puzzles, huge stuffed animals, candy and all sorts of great things. They had a basket filled for each kid, plus a family basket and one for Dave and I with gift cards and money. Thanks to all of the kids and teachers and one classmate's mom in particular who brought in the majority of the items. Our kids were all overjoyed. Then this morning the kids woke up to a yard FILLED with Easter eggs, toys and goodies. There were well over 300 eggs on our lawn, thanks to some amazing neighbors of ours. ;) The kids went out this morning to collect the eggs, and couldn't finish getting it all before we went to church. It took them two more trips to collect all of them. We also had Dave's mom fly in from Texas to stay with us. She was here for 6 months when Kera was diagnosed. She was home for 3 months, and she is nice enough to come back. I'm so immensely grateful that she's here to help us out, as I've been so overwhelmed by caring for Kera and her needs, let alone 3 other boys, one being under 3!! We spent an Easter dinner with Ann and my parents, played some games with them, and had an enjoyable day. As I said, Kera is still able to keep up with us at the games. She also has been having her teachers (she has two this year) come over once a week to give her hour long lessons. she wasn't able to have them come for lessons this week, and she told me she wanted to keep them coming because she didn't want it to affect her grades. Always the scholarly student. :) I told her she would be just fine. Her teachers said they could just come for a little while and share a video with her or read a book, whatever she wants.
Seeing Kera's body give out on her has been so hard to watch. She told me today that this might be her last Easter. I asked her what she thought about that. She said she has been feeling so sick and having such a hard time lately that she's just not sure. She said she thinks she will get better though. I hugged her and teared up at my brave little fighter. she also told Dave and I a few weeks ago when she was still able to talk more that she didn't want to be here if she was going to be unable to talk and walk and do everything she used to do. She said it was just too hard. She also said that she wasn't ready to go to heaven yet. I honestly don't think I'm ready for that either, but I also don't want to see her suffering or unhappy.
I have been diligently applying essential oils and giving her herbal pills and things that have been helpful in fighting cancer. I know that they have been shown to help, and I want to believe that they can help Kera, but this is such an aggressive tumor. It is a beast, and I don't know if I have the tools to fight it. I think that God is the only one who can make it go away.
With it being Easter, it brings me such peace to know that the Savior suffered and atoned for each one of us. He was crucified and resurrected three days later. I know we will all be resurrected again. I saw a video at church today, and I'm sure many of you may have seen it since it's been all over social media. It is the title of my post #becauseofhim . Because of Christ I can get up each morning and fight another day. Because of Him I know my family will be sealed together for eternity. Because of Him, we can be forgiven, be reunited with loved ones, be given strength to face our trials, have the courage to stand up for what's right, and so much more. I will post the link to the video here. For those that haven't seen it, and even for those that have, it's one that can be watched over and over.
I am so grateful for this Easter Sunday and for the knowledge that I have that our Savior lives. He lived and died and was resurrected and so will we all. All because of Him.
https://www.youtube.com/watch?v=_S3TI4bYerU
Thanks to everyone for your continued thoughts and prayers on our family's behalf. Please keep them coming!! :)
Sunday, April 20, 2014
Thursday, April 3, 2014
Highs and lows
With this illness there are so many highs and lows that you feel each day that it can be SO exhausting!! Just the caring for Kera alone right now is a full time job. She currently has severe weakness on the left side of her body, which affects her movement of her left leg, arm and facial muscles. She has been doing physical therapy and occupational therapy for about a month now to help her strengthen her muscles that aren't being used and to help to train her how to walk better, and get more function in her left arm and hand. Her muscle tone is very low and has what they call spastisity(sp?) in her muscles so they automatically want to be tight and fingers curled, arm bent, knee locked, etc.
She enjoys using the adaptive tricycle during physical therapy the most. I want to get one for her to use at home, especially once the weather gets nicer when we can ride outside. But guess how much one of those will cost retail? About $3500!! I still have to look into it some more and see if our insurance will cover something like that. If anyone knows about these bikes and wants to give me some direction here that would be wonderful. ;) We are also going to have an assessment done on Monday for speech therapy to see if we can get some help with her learning to talk more clearly and to have an easier time eating. Right now it's very difficult to understand much of what she is saying, and I'm constantly trying to decipher what she is trying to tell me. I've never been good at reading lips, and it's frustrating to both Kera and I when she can't tell me what she is saying and I can't understand. She's also having more trouble eating and swallowing because her mouth muscles are weak, and she can only open her mouth so far, so of course brushing her teeth is difficult too.
One of the first things they did at physical therapy and OT was to order an ankle and hand brace for her to wear. The ankle brace, DAFO, she wears all day, and it does help her foot and ankle stay in position and if she isn't wearing it her toes will curl up and her ankle will turn her foot in. So I'm grateful for the brace which does help some. The hand brace she wears all day and keeps her hand stay more open. She wears something under the hand brace that keeps her fingers open as well. She has been walking better with the brace, but her balance seems to be worsening, so while her ankle is supported, she needs me to hold onto her while she walks because she will easily lose her balance and fall. This is so hard to watch. I hate the worsening symptoms and she hates being so dependent on others to do simple tasks like getting dressed, walking to the bathroom, and getting up and down stairs, etc. These are all so difficult. Of course I have three other kids, so I try to remind her to be patient with me, but she often gets upset because she will be sitting on the floor because she has lost her balance and fallen, and sometimes if I'm not right there by her I don't hear her calling me because she has a hard time yelling ,or talking loud. Can you imagine it?? It's not pretty. I wish more than anything that she didn't have to go through all of this, but I also know that it is teaching me patience, which has never been a strength of mine. I am constantly praying that I can get through each day without losing my mind!!! My boys are usually pretty good about waiting until I help Kera to help them with things they need. Except of course Ryder who is still little. Not so little though, he turns 3 this month on the 22nd!!
Like I said in my last post, Jacob, who will be 12 in May, struggles with feeling invisible, and often he feels like Kera is getting all of the attention, whether it's by getting to go to lunch with me, (as we are often traveling back and forth to therapy or to a new lady in Salt Lake City that practices natural medicines that I am taking her to see once a week now. More on that in a minute) getting a home visit from our principal or her teachers at school, getting a package or cards in the mail, or just overall being asked how Kera is doing. He said nobody ever asks him how he is doing. I really have been trying to make an effort to spend more time with him, but my time is often at a premium and I'm physically wiped out by the end of the day. I have been reading the Michael Vey series with him though, which we both enjoy. If anyone wants to do an act of kindness, a card or letter or just extra attention paid to him or Michael would go a long way!
There are two new things that we are trying that I feel will be very helpful, and which have given us all much needed renewal of hope. One is a book and CD that my mother in law was given from a friend of her aunt and uncle in Texas who went through stage 4 cancer and beat it by doing guided imagery. He wrote a book for children that is a story of a little boy and girl who play in the woods and the boy gets bit by a poisonous tree and gets sick. There are alpha waves that are embedded in the book and in the CD, and she is supposed to listen to the CD while she is sleeping and the left brain works to heal itself. I'm also visiting the natural medicine woman who has studied eastern Chinese medicines and has had a lot of success with helping people who have cancer or strokes, or any serious sicknesses. At this point I will try anything that is not harmful or too invasive. Both of these things I have felt more confident about and more hopeful about than radiation, which they said would work temporarily and the tumor would grow again, which it did. Or chemo, which they said from the start hasn't shown to be effective at all in shrinking this kind of tumor. I've learned through this whole process that doctors do not know everything. They are doing the best they can, but they do not have all the answers, and really they have no answers with this type of tumor. I know that God has put plants and herbs here on the Earth for our benefit and to help heal these kinds of sicknesses. I pray that Kera can get some relief from her symptoms and that we can all feel peaceful and be given comfort during this journey.
She enjoys using the adaptive tricycle during physical therapy the most. I want to get one for her to use at home, especially once the weather gets nicer when we can ride outside. But guess how much one of those will cost retail? About $3500!! I still have to look into it some more and see if our insurance will cover something like that. If anyone knows about these bikes and wants to give me some direction here that would be wonderful. ;) We are also going to have an assessment done on Monday for speech therapy to see if we can get some help with her learning to talk more clearly and to have an easier time eating. Right now it's very difficult to understand much of what she is saying, and I'm constantly trying to decipher what she is trying to tell me. I've never been good at reading lips, and it's frustrating to both Kera and I when she can't tell me what she is saying and I can't understand. She's also having more trouble eating and swallowing because her mouth muscles are weak, and she can only open her mouth so far, so of course brushing her teeth is difficult too.
One of the first things they did at physical therapy and OT was to order an ankle and hand brace for her to wear. The ankle brace, DAFO, she wears all day, and it does help her foot and ankle stay in position and if she isn't wearing it her toes will curl up and her ankle will turn her foot in. So I'm grateful for the brace which does help some. The hand brace she wears all day and keeps her hand stay more open. She wears something under the hand brace that keeps her fingers open as well. She has been walking better with the brace, but her balance seems to be worsening, so while her ankle is supported, she needs me to hold onto her while she walks because she will easily lose her balance and fall. This is so hard to watch. I hate the worsening symptoms and she hates being so dependent on others to do simple tasks like getting dressed, walking to the bathroom, and getting up and down stairs, etc. These are all so difficult. Of course I have three other kids, so I try to remind her to be patient with me, but she often gets upset because she will be sitting on the floor because she has lost her balance and fallen, and sometimes if I'm not right there by her I don't hear her calling me because she has a hard time yelling ,or talking loud. Can you imagine it?? It's not pretty. I wish more than anything that she didn't have to go through all of this, but I also know that it is teaching me patience, which has never been a strength of mine. I am constantly praying that I can get through each day without losing my mind!!! My boys are usually pretty good about waiting until I help Kera to help them with things they need. Except of course Ryder who is still little. Not so little though, he turns 3 this month on the 22nd!!
Like I said in my last post, Jacob, who will be 12 in May, struggles with feeling invisible, and often he feels like Kera is getting all of the attention, whether it's by getting to go to lunch with me, (as we are often traveling back and forth to therapy or to a new lady in Salt Lake City that practices natural medicines that I am taking her to see once a week now. More on that in a minute) getting a home visit from our principal or her teachers at school, getting a package or cards in the mail, or just overall being asked how Kera is doing. He said nobody ever asks him how he is doing. I really have been trying to make an effort to spend more time with him, but my time is often at a premium and I'm physically wiped out by the end of the day. I have been reading the Michael Vey series with him though, which we both enjoy. If anyone wants to do an act of kindness, a card or letter or just extra attention paid to him or Michael would go a long way!
There are two new things that we are trying that I feel will be very helpful, and which have given us all much needed renewal of hope. One is a book and CD that my mother in law was given from a friend of her aunt and uncle in Texas who went through stage 4 cancer and beat it by doing guided imagery. He wrote a book for children that is a story of a little boy and girl who play in the woods and the boy gets bit by a poisonous tree and gets sick. There are alpha waves that are embedded in the book and in the CD, and she is supposed to listen to the CD while she is sleeping and the left brain works to heal itself. I'm also visiting the natural medicine woman who has studied eastern Chinese medicines and has had a lot of success with helping people who have cancer or strokes, or any serious sicknesses. At this point I will try anything that is not harmful or too invasive. Both of these things I have felt more confident about and more hopeful about than radiation, which they said would work temporarily and the tumor would grow again, which it did. Or chemo, which they said from the start hasn't shown to be effective at all in shrinking this kind of tumor. I've learned through this whole process that doctors do not know everything. They are doing the best they can, but they do not have all the answers, and really they have no answers with this type of tumor. I know that God has put plants and herbs here on the Earth for our benefit and to help heal these kinds of sicknesses. I pray that Kera can get some relief from her symptoms and that we can all feel peaceful and be given comfort during this journey.
just waiting
This is kera typing. I just had to take some medicine you put under your tongue and it tasted like hot sauce. (It's called Cayanne and it's supposed to improve her circulation says mom). It was my first time trying it and it is hot. The reason I called this title just waiting is because I am waiting for a lot of things. I am waiting for my cheeks to go down because even though I am off staiords my checks are still chubby and I am waiting for those to go down. I am also waiting for Easter and a Easter egg hunt for make a wish kids on the 12th. I am also waiting for this Sunday because my grandma and grandpa and aunt and uncle and cousins are coming to my house. my grandma that lives in Texas sent me a book that helps me think positive and that can make my brain tumor go away. I really want it gone.
kera
kera
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