Sunday, May 3, 2015

It has been an interesting three weeks.  Full of good days and bad. 

My baby sister was married Friday.  We were very worried I was going to be too sck to be able to make it.  I had developed sever spasms shooting down my legs.  They hurt like crazy and scared me to death.  This is my parents 9th and last child to be married.  it was very important to me to be there.

They put me on some drugs used for MS and a couple days before the weeding the spasms suddenly stopped and I was able to enjoy time with my whole family.  My nausea also subsided for a few days, as well as the pain from my tumors. 

Right on queue, symptoms have returned.

We just had a thunderbolt hit near the house, and for the first time in our married life we have a child sleeping on the floor in our room.

I am scared, but not unprepared. My legs have started to swell.  I went to the doctor Wednesday and had 2.5 liters of fluid drained from my abdomen.  There may be need for a permanent drain there in the future, because it all seems to have come back.

We are working with Palliative HomeCare and will decide after our next scans if we want to move to Hospice.

We are grateful for all the help we have been receiving.  Truly the world is a kind place that will soften my children's blows. We wish we knew when this was going to happen, but the general consensus from the doctors is that there is no way to know. 
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28 comments:

  1. UnknownMay 3, 2015 at 9:46 PM

    I'm so happy you were able to go to your sister's wedding and spend time with your family...and even feeling pretty good too! I saw your family pic on Instagram and loved it...you rocked that hat :). I'm always praying and hoping for the best for you and your family. Hoping that you have more time than you might think left here on Earth, but that it isn't too painful. I sure love and admire you for your strength and grace.

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  2. AmyMay 3, 2015 at 11:26 PM

    I am so grateful that you were able to attend the wedding and spend time with family. We sure love you Alisa. I have always admired you. You are beautiful, creative, kind, strong, and graceful. You have taught me to look fear straight on and to never quit fighting. Our prayers continue for you and your family.

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  3. AnneMarieMay 4, 2015 at 6:09 AM

    So glad you were feeling good for the wedding and so sorry it can't always be like that. That thunderclap was crazy!

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  4. LeahMay 4, 2015 at 6:36 AM

    You're an amazing woman Alisa! We love you and your family! We will continue to pray for you!

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  5. Buzybugs pixie.blogspot.comMay 4, 2015 at 9:15 AM

    I'm so glad you had a good window to be able to attend the wedding. My prayers continue for you, Josh and your boys.

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  6. Buzybugs pixie.blogspot.comMay 4, 2015 at 9:16 AM

    I'm so glad you had a good window to be able to attend the wedding. My prayers continue for you, Josh and your boys.

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  7. SonjaMay 4, 2015 at 9:45 AM

    One of my favorite parts of the wedding day was going to Costco with you to buy more flowers. I loved the look on Kari's face when she saw us walk out of the store with them. And they were lovely and not too many at all! Kirsten has you to thank for having a beautiful reception--I'm so glad you were able to steer us in the right direction on some of those decisions. You looked so good that day--I feel like your determination to be there was the best present you could give Kirsten and all of us. You are incredible! I hope you feel better today. I love you!

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  8. skyeMay 4, 2015 at 10:15 AM

    Dean and I were so glad to see you at the wedding. On more than one occasion, we have mentioned what a beautiful woman you are, and Friday night you looked as pretty as ever! Our prayers for you and your family continue. <3

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  9. Lindsay ErcanbrackMay 4, 2015 at 11:29 AM

    I loved seeing the picture from the wedding on Instagram with you in it. So glad you could be there with your family. Love you!

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  10. KirstyMay 4, 2015 at 11:35 AM

    I am so glad you made it to our wedding. You were the final touch to make it a perfect day. I'll never forget it. I love you alisa.

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  11. The PadreMay 4, 2015 at 12:26 PM

    Big Hugs

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  12. JillMay 4, 2015 at 1:05 PM

    It was wonderful to see you and get a hug at the reception. I'm so happy that you were well enough to be able to a part of everything with your family. You looked beautiful. Love you Alisa!

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  13. BradandLisaMay 4, 2015 at 5:45 PM

    I'm so happy you were able to attend Kirstens wedding! I can't believe everyone is married now! What a tender mercy that the pain subsided and you were able to enjoy time with your family. I love you and continue to pray for you!!

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  14. Jon PaulMay 4, 2015 at 10:04 PM

    It was great to see you, Alisa. I love you and hope you get feeling better again.

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  15. Jon PaulMay 4, 2015 at 10:04 PM

    It was great to see you, Alisa. I love you and hope you get feeling better again.

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  16. wendipooh13May 4, 2015 at 11:43 PM

    how amazing to be at your sisters wedding!!!! that is exciting!!!! always thinking of you and in our prayers!!! you are strong and amazing!!

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  17. KerryneMay 5, 2015 at 4:13 AM

    I'm SO glad you felt well long enough to go to the wedding. Those memories will last a lifetime. I pray for you everyday Alisa! You amaze me, the strength you have is so inspiring. I love you. Your kids are so lucky to have such an incredible woman in their life. Xoxoxo

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  18. AmyMay 5, 2015 at 6:47 AM

    I'm so glad we could all be in the temple together. My focus and perspective were sharpened, and my heart was full as I looked around and saw so many of the people I love (including you!!). So glad and grateful that you could be there for it. Besides the temple, one of my other favorite memories from the day was seeing you dance with Josh and your dad and Luke.

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  19. Lindsay BarnesMay 5, 2015 at 8:07 AM

    Alisa, I'm so glad we got the chance to talk a few weeks ago. I loved seeing you. I thought you were so sweet to tell me how much you wanted to be at your sisters wedding. So determined to attend. Not once thinking of yourself, just wanting to be there for your family. I was in awe of your selflessness. They are all so lucky to have such a wonderful angel in their lives. I'm so happy you could share that special day with them. I'm thankful for the impression you have made on my life Alisa. I'm so sorry for all the pain, physical and emotional you endure daily. You've always handled it like a warrior and with such grace and beauty. I have nothing but admiration for you. You are truly one of a kind. You will always be so dear to me. Thank you for your loving friendship. Josh, I think the world of you too. Always being by Alisa's side. When I spoke to her the other day I could just feel the intense love she has for you. I think of you both everyday. Love and many prayers to you and your sweet family.

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  20. Lisa McMay 5, 2015 at 12:23 PM

    Seeing the pic of you at your sister's wedding made my heart happy. I talked to Anne on Sunday and was so happy to hear you enjoyed your time with your family. I also loved seeing you with Steph last week:) We love you and continue to fast and pray in your behalf. Tulips will forever remind me of you!

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  21. Deb ThurstonMay 5, 2015 at 2:05 PM

    I was so happy to hear you were able to attend Kirsten's wedding! I've been asking my mom for updates and was so happy you were able to make it to the sealing. Such an awesome thing to have the entire family together in the temple. I hope you know what an impact you've had on everyone who has met you, will meet you or read your blog. You are an amazing example of never giving up no matter what is up against you. I hope and pray that miracles continue to bless you and your family!!!

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  22. Coach WhiteMay 5, 2015 at 4:10 PM

    Alisa, I admire your openness, strength and wisdom as you share this journey with so many. Thank you. We're still praying for all of your family.

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  23. Mark JohnsonMay 6, 2015 at 7:16 AM

    It was fun to be around you at the wedding. Thanks for inviting us all over on Saturday as well! It wI'll always be a very memorable birthday.

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  24. Michelle CMay 6, 2015 at 10:28 AM

    So glad you felt well enough to attend the wedding and so glad you felt well enough to update the blog. I think of you everyday and pray for you to have strength and comfort. I love you!

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  25. Nick RicoMay 9, 2015 at 4:28 PM

    Thinking of all of you today! Our prayers are with you.

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  26. BrookeMay 11, 2015 at 10:13 PM

    The wedding sounds amazing & I'm so happy you felt good that day! We love you & pray for peace & comfort for you, Josh, & the boys. ❤️

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  27. Welch TLCMay 11, 2015 at 10:34 PM

    Contiued prayers for you and the boys. All my love and admiration

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  28. MandyMay 16, 2015 at 1:34 PM

    Sending so much love your way. I have learned over the years that many angels are among us, seen and unseen. I pray they attend to you and your family during this time.

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