Sunday, August 2, 2009

I really really wish that I could get on here and share some good news. I am ACHING to heard good news from the doctor's. It is so hard to listen to them, day after day, tell us that nothing has changed or something else has gotten worse or two things have gotten worse while one thing has gotten better. It is seriously like a rollercoaster!!

Today, Daniel talked to Dr. Hueng, Kameron's pulmonologist. He told Dan that Kameron is having a "Lupus Crisis"

Here is some information about a Lupus Crisis that I pulled from THIS website:

"Occasionally, perhaps about 1 in 100 Lupus flares, the disease is so severe it could be called a ‘Lupus crisis’. In a Lupus crisis, there is a rapid onset of severe disease in many parts of the body. There is kidney failure; disease in the lungs with breathlessness; fluid around the heart; inflammation and swelling in the brain, often causing fits. Although cases of Lupus crisis are rare, many require treatment on an intensive care unit, and about 1 in 3 people with Lupus crisis will die. Recovery from a Lupus crisis occurs in the majority of cases, but some people are left with some long term problems."

The website also says that only 2 out of 100 people with lupus will get severe kidney failure and a lupus crisis. So, Kameron's case of lupus is BAD. We knew that it was but, I didn't ever imagine it would be THIS bad. And for so long his lupus was controlled well with his medications that it is hard to have seen his lupus get this out of control.

With this new information, I do not see an end in sight.
Our tunnel just keeps growing and growing and the light at the end of it can't even be seen.

That is how I feel today.

However, I have decided that this is my life RIGHT NOW. This is what I am being faced with today and just like any other trial or difficult day, I cannot back down for that is what the adversary wants. I can't worry about 2 months down the road. I can't wonder what could have been done differently in the past.

I have to live TODAY. And what good will it do to sit and complain about my life right now? It will just make it more miserable for me and for everyone around me.
I am a Daughter of God who has always been taken care of during difficult times and that's not going to change now.

I am always amazed at the Lord's tender mercies that seem to manifest themselves at the perfect time;

~ A phone call from a dear friend right when I'm at my lowest.
~ A hug from someone when I was thinking nobody cares.
~ Lunch with girlfriends to get me out of that hospital.
~ A smile from the nurses or a pat on the back from the doctor.

I am BLESSED to have people who care about me.
I am GRATEFUL for my AMAZING friends who have been such a support to me, more than I think they will ever know.
I am AMAZED at the outpouring of love from people all over. It seems like each day I am learning of someone else praying for us. (and I thank you).
I am BLESSED to have a home opened to me, my son, and my mother so that we can be close to my husband.
I am truly GRATEFUL for our Father in Heaven who has unconditional love for me and wraps his arms around me at my most difficult times and gives me the push that I need to continue another day.
I am AMAZED at the strength of my husband during all of this. The few times he has been awake, his Spirit has been so strong. He is such a fighter and for that I am GRATEFUL.

I have SO much more to be grateful for! It's all about the cup being half full - not half empty.
So, however long we must travel this difficult path I know that we will make it to the end.
And in the end, I will be standing side by side with my dear, sweet husband.
I know there will be bumps and potholes along the way but, if I am able to remember that I am very blessed during this difficult time and I have a whole legion of angels in Heaven cheering me on and pushing me along; and most importantly a Heavenly Father and Our Savior, there whenever and wherever I need them for love and understanding that I will be able to make it through this.

My mom told me a quote once that said:

"Everything will be alright in the end, and if it's not alright, it's not the end."

So, I will be here - fighting until the end.


Steven said...

We haven't stopped praying for you. Hang in there, kiddo.

Sailing Past Maturity Straight into Senility said...

Keep working on your GREAT attitude - it will get you through all of this. You are in our prayers!

Ashley said...

You're very loved, very admired and very prayed for. :) Let me know if we can do anything else.

Remember that the miraculous thing about miracles is that they *do* happen.

And you deserve a million.

Rebekah said...

we are continually thinking about you and sending you prayers. please let us know what we can do to help! I LOVE that quote from your mom. it's perfect!!! keep your chin up!!

Erin said...

That quote made me tear up. It is so true. Things will be ok. Maybe not today. Maybe not tomorrow. Maybe not ever the way we wanted them to be. But they will be ok some day. Jami you are strong and like I told you before, your example shines. Keep shining for all those that are looking in your direction at this time. We continue to pray for you, Kameron, and Kason.

Shauni said...

Hi Jami! I've been reading your updates for the last couple weeks, and I just wanted to let me know you're in my prayers. I really admire your faith and courage! Hang in there!

Maren said...

Thank you so much for this post. I am sitting here with tears rolling down my face at what you said. It is all so true and I really needed to read this today. Life has been so hard for me lately in other ways and I havent seen a light at the end of the tunnel for me either. But I do need to remember all that I am blessed with and that I am grateful for. Those things will get me thru this time just like it will for you too. Love you Jami! Your strength amazes and inspires me.

Brooke and Brian said...

Hey Jami, you don't know me but I went to EA and hung out with Kameron and his friends quite a bit. I am sorry to hear about him, I will pray for your family. Thank you for your streangth, you are an inspiration.

J2AK said...

Thank you for sharing your story with the rest of us. We love to know how you and your family are doing and how we can help. Your positive attitude is a strength to us all. We will keep you in our prayers! Please send our best to Kameron and his family!:) They are wonderful people whom we love dearly. We wish you the best in this trying time. :)

laurdacooj said...

Jami- you are such an AMAZING woman, I am so impressed that in the midst of this trial, your optimism and faith- and like you said, that will help so much to get thru this! I LOVE YOU, I am teary eyed reading this today wishing I could take it away from you for a little bit so you could have a little break, I am so bumed we didn't get to meet up today, but we will soon :)

Elisa said...

Jami - you don't know me but I know kam from youth conference in Japan. We are praying for you and your family and hope that Kam makes a full and speedy recovery.

Jessie and Byron said...

I cant imagine the way you must feel, everytime I read your blog I am amazed a how strong you are. The things you are having to go through will make you without dought an extremely STRONG person, (and I think you are already super strong) you are truly someone I think about daily and pray that everything goes well!

Jeff said...

I served my mission with Kameron.... I am so sorry to hear about his struggles. If anybody can fight through this he can. He had a lot of lousy companions and never complained... He just pushed through it, and was awesome. This lupus thing is like a bad companion. He just doesn't complain and will overcome. Tell him we love him

Spencer and Marlee said...

I LOVE that quote! Jamie you are an amazing girl! I can't even imagine what you have been going through! I want you to know that your family has been im our prayers and will continue to be in our prayers! You are a strong girl! We love you guys!

Lara said...

My heart breaks for you reading this. You are keeping such a good attitude through this all and are a true testament of an amazing LDS wife. You're always in our prayers.

Christi Graham said...

You are amazing Jami! Your family are in our prayers as well. Please let us know if we can do anything for you! That really is a great quote. I love it!

Kara, Garrick, Rylee and Jadyn said...

Oh Jami, you are in incredible, INCREDIBLE woman! I don't know what else to say, but that I am so grateful to know you. I think I'm glad I didn't read this before I saw you tonight, I don't know if I would have been able to keep it together. I love you, and as always, I'm praying for you and your sweet family.

The Solomon Fam said...

Reading this brought tears to my eyes. I can't hardly stand to think of you and Kameron going through this. But your example of Faith and courage is amazing. Your Mom is right, it will be alright in the end. Keep hanging in there. I hope to see you on Friday, I will call you.

Gillman Family said...

Jami - We Love You! As I shared your blog with Alan and the kids last night, our hearts break for you - yet we also have so much admiration for your desire to find the positive - to trust in the Lord, have faith and hope, and realize the eternal perspective in everything. I so wish we were closer to help - but you are right - you have awesome friends, such a helpful and wonderful Mom, and extended family everywhere praying for you. A big HUG to you - we love you. And pray, pray, pray for your sweet family.

Lindsey said...

I don't think I can say it enough how much you AMAZE me everytime you give an update! I hope someday to have the strength and faith that is so evident in you! We will keep praying for you guys.

Tyler and Brianna Hatch said...

Tyler and I have been keeping up on Kameron and have been keeping your family in our prayers. What strength you have, and what a source of comfort you must be to Kameron and Kason. We never know what the Lord has in store for us, so we will be continuing to keep your family in our hearts and prayers.

P B Wallace said...

Jami, I am Kara's Dad. She forwarded a link to your blog post because she was so moved by it. I have to we in our family were too. Mom's are amazing and it sounds like your's is no exception. She's right. Love that quote. Hope you don't mind, but I passed on the link to your blog to a good friend of mine who is dealing with terminal cancer that her Father has. Thanks for the inspiration. You and your family are in our prayers.

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