I have had a hard time deciding how to share my news regarding Elisabeth. Especially since the past 2 posts have focused on finding the good in all things. In all truthfulness there is not much good to be found right now, but I am trying diligently to remember my many, many blessings and to accept life as it will come.
As I have mentioned previously, the ACTH therapy did not work for Elisabeth. This was a bit of a blow since there was an 80% success rate. Her neurologist wanted to see her again immediately to discuss our next treatment plan, so we traveled to Spokane on Tuesday.
After a bit of discussion we decided to start Elisabeth on a medication called Zonisamide. Zonisamide has not been studied much and is only believed to stop the spasms 30% of the time. It's not a very encouraging number, but it's worth a try. The other option we discussed is something called Topimax. Topimax has more severe side effects than the Zonisamide and a 43% chance of reducing (not stopping) the seizures. Also, Topimax has a 30% chance of making the seizures worse. As you can see, we want to postpone that medication until there are no other options available.
Right before I left, the neurologist handed me a stack of papers that he had copied. It was a current review by Dr. Donald Shields, who is known for his knowledge of infantile spasms. I took the time to glance through it before I started on my drive home. There were a few lines that Elisabeth's doctor had highlighted. It said this:
"Infantile spasms is associated with a significant risk of mortality and morbidity. Nearly one third of patients die, many in the first 3 years of life."
I cried the whole way home. This was way scarier than the 1 in 20 number that I had read on the Internet a few weeks back. And the fact that Elisabeth didn't respond to the most successful treatment available (ACTH) makes her odds of survival much, much smaller.
I am trying not to let my worries get ahead of me. We are just starting the new treatment, and while it does not have a high success rate, I will not give up on it just yet. Elisabeth has changed my life in a most beautiful way. She inspires me to be a better person. She encourages me to be brave. She helps me identify the simplest joys in life. Elisabeth is the truest meaning of the word blessing. I will continue to cherish my time with Elisabeth, each and every moment. Families are forever.
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4 weeks ago
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31 comments:
I've read this post a few times, some parts more.
I can't tell you I know how you feel or even that everything will be perfect. What I can tell you is that your family inspires me to be better, braver and consider blessings and simple joys, just as Elisabeth has done these things for you.
Elisabeth was blessed with you as parents because Heavenly Father knew you would work tirelessly and lovingly to make her life the best it can be. In the process you have, and will continue, to touch so many more.
I am so very sorry to have heard this latest news.
Lisa, I'm crying for you. I can't begin to imagine what you are going through right now. I do know that you love your sweet little girl and that your family has blessed the lives of so many more through sharing your experiences. We will continue praying for all of you. No matter what happens, it is definitely comforting to know that families are forever.
I am always amazed by the grace you handle these trying situations with. Elisabeth is a true blessing and we love her and will continue to pray that this new treatment will eliviate her spasms.
I can think of no better family than yours to guide Elisabeth through her journey here on this earth.
We love you.
Lisa-
I know that no words can ease the pain you are feeling right now. Receiving news like this makes everything else seem so small. What a reminder to live each day to the fullest. To be the best wife, mommy, sister, friend that I can be. I will continue to pray for you. I'll especially be praying for many, many more weekends like last weekend for your family.
I can't find the words to tell you how sorry I am that you are having to go through this. Elisabeth must be such a special spirit, and so are you! Our prayers are continually with you and your family.
I am completely beyond moved by the love between the lines.
Lisa, there is no doubt, that Elisabeth is in the best of hands right now. She is where she needs to be. God gave you her, because he knew that you could handle it and take the best care possible of her. And He is very pleased.
I simply ache for your family. Let me know if I can do anything. Mattie and I would love to help in anyway. Prayers always. Jan
Wow, Lisa... I am in awe (and have been for a long time) at the grace and composure you've displayed through the many twists and turns life has thrown at you over the past year.
We love you guys and pray for your strength, courage and peace in your hearts and home.
I wish we could do more to help, but know that if you ever need to come to the wet side for anything, you've got a place to stay.
-mike 'n' cindy
Lisa,
Although I have never met you or your family, I have touched by your thoughtfulness, truthfulness, and clarity. As Elisabeht inspires, so do you. I cannot imagine walking in your shoes, but you are a testament to how it should be done.
You and your beautiful family are in prayers in Colorado.
erin
(thesakryds.blogspot.com)
Dear Lisa,
I cannot find the words. My heart aches. I am weeping . Having a knowledge that families are forever is the only solace.
Little Eliabeth being a celestial soul. She, through your ability to share with all of us the true divine nature of this little one is making us all step back and remember the truly important things in life. Family, Love, compassion .
I wish I could come and sit with your little ones so you and Donald could attend the Temple.
My prayers are with you continually.
Love,
Stephanie
I am so sorry. I can't even imagine what you must be going through. I am amazed by your strength and courage. Lisa, YOU INSPIRE ME, and so many others to want to better. You and your family are truly amazing.
Even though I knew all of this already, somehow seeing it in print makes it so much more real. I just plan to spend as much time holding and loving and kissing our precious girl and enjoying every second of her sweetness that Heavenly Father plans to give us.
I'm so sorry Lisa. Like everyone else, your family is so inspirational to me. You guys are in our prayers.
Lisa... I know there are no words that can make it okay... we are praying for Elisabeth and your whole family.
I feel so blessed that I was able to hold and cuddle Elisabeth for a short while at the park... she really is an angel on earth.
Lisa and Donald,
My heart is aching for you right now. The unknown of what might happen is always so frightening. I am so sorry that you are facing this most difficult challenge.
But I am also so touched and humbled by your perfect love for this amazing little girl. She is touching the lives of so many people that she does not even know. Thank you so much for sharing her with all of us.
Your faith in our Heavenly Father's plan is a beautiful example to me. I will continue to pray for your sweet family that the answers that you need will come, and along with that, peace and understanding in His will for your beautiful family.
Lisa-
I'm so impressed with your positive attitude. You really are amazing, as is Elizabeth.
You know how much I love you guys!!!!!! Like I said on the phone yesterday....You never know...Look how much she has surprised us in the past. When we thought she wasn't strong she proved us wrong... Your daughter is amazing... I love the picture at the end of the blog...When I scrolled down tears came to my eyes...I just love baby girl..I always call her that huh??? lol...Love u lisaxxxxxxooooo
You are all such an inspiration to me. I am in awe at your ability to stay positive. Know that prayers will be coming from our little corner of Pasco!
What a blessing you are to Elisabeth as well. I know you're exhausting every effort in making sure she has the best possible care in every facet of her life. You're a wonderful mother, Lisa. I'm so grateful for the comfort and understanding that eternal families brings. She's yours forever! We'll continue to pray that this new medication will help control the spasms. I'm so very sorry for this recent news. Your family is in our every thought and prayer.
Lisa, I love you. Words cannot express how sorry I am that you received such grim news, and I cannot imagine the pain and heartbreak you are feeling. But your strength is amazing, and I feel so blessed to know you.
After speaking with Donald after your appointment, the blessings of eternal families was in the forefront of my mind. I am so grateful that you ended your post in the happiest thought of all...That no matter what happens in Elisabeth's beautiful life, there is the comfort in knowing that you all will be together forever someday.
We continue to pray for her and for your family. You are loved.
were soo sorry to hear that hopefully this med will work we will keep you guys in our thoughts and prayers!!!! we are here if you guys need anything just give us a call you love misty and brad
Elisabeth is a sweet soul! How blessed you are to have her in your life for this time, and for the ETERNITIES!! Remember that no illness, condition, or complication can take away the eternities!
Hang in there! We love you guys!
Lisa, You continue to impress me everyday. You are in our family prayers. We love you guys.
Lisa, I came across your blog in a google search. If you haven't already, please join us at http://health.groups.yahoo.com/group/infantilespasms/ We are a large group of IS parents. Fortunately, you will find that we have not experienced anywhere near the 30% mortality rate quoted in the article. Hope to see you there.
Erin M.
Lisa,
Oh my, I don't even know what to say, other than I'm praying for you and your family. I'm also praying this new medication will cure her spasms. Elisabeth is one very lucky baby to have such a wonderful mommy. Give her kisses from Nebraska!
Jill
Lisa,
It is difficult to read about your precious Elisabeth and not weep. She is truly an angel sent by a loving Heavenly Father to experience life in your home, and be the beneficiary of your love and goodness. You and your family remind me of the 13th Article of Faith...."if there is anything virtuous, lovely or of good report or praiseworthy, we seek after these things." We love you and continue to pray for Elisabeth and your family. Carolyn
Everything has already been said, but I wanted to let you know that you are so loved and thought of and prayed for. All of you. Love, The Wrights
Oh, what heavy news. This makes my heart break for you! I'm at a loss for words. I just wanted you to know I am here in any way I can help. I love your family. I think you and Donald are such terrific parents - just wonderful people in general. You guys are awesome. I have hope that things will work out. What are percentages, anyway?
I have not had much opportunity to be on the internet lately. I'm just now catching up on your blog. I cry with you. I don't have many words. Your daughter is so precious. I pray that those dreadful percentages do not apply to Elisabeth.
I love seeing her sitting up! She is getting so big...more and more beautiful each month!!
Give her a smooch from me!! You're all in our prayers!
I am so so so sorry your family is going through this. Your children are gorgeous!! I can't imagine the changing emotions you go through each day. My heart aches for you as a mother. Knowledge that families are forever does bring comfort. Our thoughts and prayers are with you.
God bless you and your family as you make these difficult medical decisions. You sound like an amazing mom and you are obviously inspiring others with your experiences and faithfulness.
I'm so sorry you've been dealing with lots of questions and uncertainty about what to do. I truly understand the tug in your heart! Caleb is on topimax and it has seemed to help with all of his unique neurological behavior. Sending lots of love your way!!!!
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