Thursday, May 23, 2013

biopsy friday

this has definitely been an off week for me. the events of the last week since finding the lump have turned me a bit sideways. i am feeling out of sorts in a million different ways.

i am really pissed off that my three months off from melanoma land got taken away from me by this lump. by the time i get these biopsy results back, we will likely be in june already. almost half of my time off in between scans will have been over by that point. i hate this lump from taking any amount of my time.

i am scared out of my mind about these biopsy results. the conversations about treatment the other day with my oncologist keep spinning in my head. talking about if this is melanoma, and starting treatment. what happens if the treatment doesn't work. i literally can't handle even thinking about the need to start treatment because we all know what that means. i can't even write this paragraph without having tears streaming down my face. i think that my tear ducts are on automatic reflex when they hear the word "treatment" because it is like the faucet is turned on everytime that word crosses my brain.

i am super sad.

i am completely exhausted, i am barely sleeping and am really stressed which make for a miserable combination.

i am really nervous.

i am very anxious.

i am tremendously worried.

i am scared out of my mind, and i am sick and tired of being scared and it only seems to be getting worse as each appointment comes up.

i am doing my best to keep living.

i am being breathing deeply.

i am being a mom, and enjoying malena's first gymnastics show. we celebrated by having chocolate donuts for breakfast (you know how we feel about starting the day with donuts), and we had a pizza party with cake and ice cream for dessert. she helped make the cakes and then decorated them all by herself (note below how many candles and decorations we needed to celebrate;)). she was very proud of them, i was very proud of her.

i am being a climber. tonight was our monthly mystery night with the girls, and my friend kimberly's mystery surprise was thai food for dinner followed by a climbing class. it was so fun. i could have climbed all night if they would have let me. check another first off the bucket list, i am the one in pink on the right side making my way up the wall.
i am believing that everything will be okay. i got this newsletter from liz lamoreux and it couldn't have been better timing.
"hello beautiful soul,
Today, I really want to invite you to pause right here, right now, and read the words in the photo below while you take a few deep breaths.

everything is going to be okay

I know this is a hard one sometimes. Over here in my corner, a few people we care about are in the midst of health concerns and grief, and I'm standing on the edge of wondering if I can trust it too.

But then I close my eyes and remind my body and heart what trust feels like and hold onto the belief (by my fingertips) that all really will be okay. Even when I can't control what comes next. Even when grief will be part of the journey. Even when I wonder why life hands a person so much.

And I guess today I just really want you to know that you're not alone as you seek ways to trust that everything is unfolding just as it should and that it really will be okay.

Thank you for this space in your inbox. Sending light and peace to your corner of the world today. If you need me to catch anything, especially as you think about trusting today, just press reply and share where you are. (And yes, I really mean that.)

i am sending good vibes to chase, here is the latest on our little warrior:
+++ "If a smile is worth a thousand words, then you could have written a novel today in our meeting with the Drs and staff! The overall tone of our discussion was on Chasers progress. Everyone seemed very pleased with his muscle tone, distinct reations to stimuli, processing, swallowing, and subtle attempts to communicate. Although he continues to progress at a slow rate, he is definately heading in the right direction. Mom and I are still holding out for more, but clearly its up to Chase and the Big guy to set the pace for this marathon. We also discussed how much sleep he is getting and how overly rested he is lately. Chase has clearly been doing a good job- But we know He is capible of more, much more! Next week we are going to try and slowly drop the doses of some of the pain meds that are causing him to be so drowsy. Again, it is going to be some trial and error, but we will figure it out. His stomache PH is back to normal once again, lets hope it stays there. It seems like that was one of the driving forces to the N-storms, that only 11 days ago, completely hindered his progress. So overall, the meeting went very well, but the highlight of the meeting was the dission of Chaser coming home. The Drs have set a date for mid June- Only three weeks away! We are not sure how realistic this is, and more than likely it will get bumped out a time or two, but the conversation is there! Chasers day in therapy was good, but uneventful. He did some stretching, worked on positioning, and did a little snoozing. While the highlight of our day came in the afternoon meeting, Chasers came this evening in the form of an email. One of his little lady friends Lilly, emailed mom a video message. She called me with tears of joy, explaining she had just played for Chase 5xs, and all 5xs he made a valiant effort to put a smile on his face! Mom is staying with Chase again tonight, and some friends dropped by to bring some laughter to the room. I hope you boTh have a great night, and a good day tomorrow. God is Good"
+++ Chase had another wonderful night last night. Grandpa Sheehan was the one in charge. He had the privilege of sleeping in Chase's room on the most comfortable couch/bed ever.....not!!! I must admit wasn't sure how Grandpa was going to do cause he can fall asleep in the middle of a conversation, in church or even standing up if he was really tired. But he did GREAT!!! I was so proud of him. I knew Chase was in good hands when the first thing Grandpa said to me when I walked into the room, "it was an honor to stay overnight with my grandson". Although this situation that we have found ourselves in, is the most horrible thing I have ever gone through and I would give ANYTHING to have our life back, has also changed our lives for the good. I see things in a different light. How I act towards people, seeing the postive in any given situation and to be able to share my feeling towards my friends and family. I do owe alot of that to my wonderful husband. He can turn any given situation into a positive. When I am down he just builds me right back up and for that I thank him and love him even more!!!! I know Chris is feeling alittle down right now because he has not been able to see Chase that much in the last couple of days cause he has been sick but honey just know Chase is doing great and he loves you very much. Soon you will be able to walk to his bed side lean in for a kiss and feel his breath againist your face. Chase is anxious for you to see him again because he is longing for some bacon to be rubbed in his mouth, he knows mom ain't doin that....

Chase had a great day of therapy and a fun day with Grandma and Grandpa L. I know Grandma got to snuggle up in the recliner holding Chase for awhile and I got to go to Tanner's track and field day at school and then take Ava to gymnastics. Chase's therapist in speech was impressed with his mouth movements. He had his Trix yogurt, she put it on his bottom lip and it seemed like he was sucking it in as if he was trying to lick it off. He didn't actually do it but he gave it a good ole try!! PT was alittle stressful. Chase has had some stress on his hips so they were doing some strengthening and stretching. Needless to say he didn't like that to well. He let out some heartfelt agonizing cries. That even made Grandma cry. But we know it is all for the best. I just kept whispering into his ear...."No pain No gain Chase"......He is such a big boy and so strong that I know he wants this more than I do.....So tonight we are going to get a could night sleep and start the weekend out right with another great day of therapy. Everyone have a safe holiday weekend........God is Good :)

P.S. As I am writing this post at Chase's bedside he looks over at me yawns a really big yawn, lifts both arms up half way as if to stretch and lets out a big sigh......I guess that means night night....I love that little boy! "
i am going to have a good weekend with my family, i hope that you do the same. enjoy all of the moments, big and small. every single one is so important, you will never get them back again. be safe, and wear your sunscreen.
i am thankful for all of the good thoughts, prayers and mojo for tomorrow. when i walk in to the room at 3:15 i will take you with me.
i am being brave.
anywhere i go, you go. xoxo


  1. Big hugs to you Alli. We will be keeping you in our thoughts all weekend and sending lots of good mojo. Wish there was more we could do. oxoxo

  2. My thoughts and prayers have been with you and will continue to be. I am so sorry you are going through all of this. But, I do want to tell you that I had a surgery on April 17 and thanks to you and St Jude, I was not scared at all. Normally, I would be. I didn’t even have to take the 5 mg Valium that the doctor gave to take before leaving for the hospital. I prayed to St Jude for comfort and remembered your words Be Brave. You and St Jude are so cool. I will pray and ask him to give you the comfort that I experienced.


  3. I look forward to seeing your blog in my box. I feel a bit selfish as it feels like I'm getting strength from you and your journey, your admonishments to Be Brave, and your honesty and courage in telling your story to us. Just know that every night you post, I'm reading it and sending as much power and strength and energy as I can muster back at you to use in your fight against melanoma. You are not alone. You. Are. Brave.