In January of 2014, it was found that my sister had a large brain tumor (glioblastoma to be exact). She had brain surgery to remove the tumor, which was followed by radiation and chemo. During her brain surgery, I wrote about it in my blog while documenting it. I've compiled the posts and photos here.
2016 Update: Alicia had two more tumors found on her brain in the fall of 2015. She underwent more chemo, radiation and was working on qualifying for a clinical trial. Unfortunately, the cancer moved very quickly and she passed away on January 15, 2016. She was visited by dozens of close friends and family members in the days leading up to her passing and her memorial a few days later was a beautiful and packed celebration of everyone’s love for her. She is greatly missed by everyone who knew her.
1.22.2014 getting personal.
(Originally posted here, January 22, 2014)
I'm not entirely sure where to start for this post, so I'm just going to dive right in.
My sister had a few seizures last week and as a result, they discovered what the doctors are referring to as a "mass" on her right frontal lobe. I flew out to Huntsville today to be with her and my family as she undergoes a biopsy and surgery to remove the mass. Strangely enough, this isn't the first time we've gone through this together. The first time was 17 years ago and it was my dad who had the tumor. I won't go into details about it, but the experience rocked me to my core and changed our family in a way I never could have predicted or would wish upon anyone.
Thankfully, this time is different. My sister is being incredibly strong and positive and she sees every detail of the way things have unfolded as a blessing…and it has been. From the fact that my mom was on the phone with her while she had her first seizure to the convenience of the timing with me being able to take off work without hassle to fly out here, everything has happened in the "best" possible way it could.
My biggest struggle so far has been staying in the present and not letting myself go down the path of reliving the emotions and fearing the same outcomes from 17 years ago. In the week leading up to traveling out here, I surrounded myself with friends every night and kept myself busy with work and socializing to keep my mind from wandering too much.
Now that I'm here, I'm dealing with it in the best way I know how…by documenting it. My sister is so amazing that she gave me permission to take photos of the experience. It's definitely helping me focus my energy on something that can distract me from the realities of the situation while still letting me be present for her and the rest of my family. I'm so proud of her strength and openness and can't wait to see her get through this with flying colors.
1.23.2014 this is how i deal.
(Originally posted here, January 23, 2014)
I couldn't sleep a wink last night, which turned out to be just fine. My nephew woke up around midnight having had a nightmare and I managed to get to him before he woke my sister or brother in law. As I hugged him tight and cuddled him back to sleep in the darkness I couldn't have felt more in tune with how he was feeling at that moment.
I passed some of the time editing photos and writing last night's post, yet I still found myself fighting for sleep around 2:45am when I heard my sister's door open and saw her attempt to creep past me on the couch. After alerting her to my consciousness, she came over and sat down with me. We talked for a while and then listened to an Acappella song called Peace Be Still that has helped calm her in the past. I'm so grateful for that one on one time with her in the darkness last night.
This morning was a blur as we rushed out to the hospital at 6:45am. My mom and step dad attended to my nephew this morning so we could go to the hospital first. They admitted her and she was taken to get her MRI before being prepped for surgery. Sean (her husband) was able to stay with her this whole time while I waited and met with the incredible outpouring of support from visitors showing up to wait with us. By the time she was being prepped for surgery, my mom had arrived and Sean came to get us to wait with Alicia for the surgeon to arrive. After quite some delay, we were shuffled out around 10:30am and she was taken to the OR.
We're currently waiting on news. Their plan was to do a biopsy first and send that off, then continue to remove the remaining tumor. It's been an emotional morning, but I'm so proud to have witnessed nothing but strength and joy in my sister as she waited for the surgery to get underway. I don't think I heard anything but lighthearted jokes come out of her this morning.
The outpouring of love from everyone has been nothing short of incredible. We've had visitors waiting with us from the moment we came through the doors of the hospital this morning. We've also been showered with donuts, chicken biscuits, coffee and hugs while we wait. Shortly after they took my sister to surgery, the 20 or so visitors formed a huge circle in the middle of the waiting room to pray with us. If that's not proof of God's shelter during the storm, I don't know what is.
I've been personally updating Alicia's Facebook page and will continue to do so until she is recovered enough to handle it on her own. Please keep all the positive comments coming. I know she will be overcome with joy when she sees your incredible support and response today.
I'm currently nestled into a corner of the waiting room editing photos and listening to music. It's how I'm dealing. We're going on three hours waiting now, but just got word that the surgeon will be out to give us news in about 15 minutes.
(Unfortunately, I wasn't able to sneak my DSLR into the surgery prep room with my sister, so I had to settle for iPhone photos, but I know you will all understand.)
1.24.2014 on the road to recovery.
(Originally posted here, January 24, 2014)
Alicia: "Hey Chelsea, your sweatshirt is in."
Me: "Ok."
Alicia: "Maybe you can just embroider it yourself."
Me: "Ha, yeah, sure, I'll just teach myself."
Alicia: "Well it's not like it's brain surgery or anything."
If you're wondering how Alicia is doing, the previous conversation is a good example. Surgery slowed her down, but it didn't take away her sense of humor.
Today has been a long but good day. She was moved to a regular room around 10am this morning, which means we have the freedom to come and go as we please (I haven't utilized that "go" option yet). We're asking that anyone other than family still refrain from visiting until Sean decides she's ready. She is in and out of sleep and tires quickly.
We've had nurses, administrators, social workers and physical therapists in throughout the day to check on her progress. Though her left side is noticeably weaker and less coordinated (she's naturally right-handed as it is), she's doing really well and has even gone on three walks down the hall today. Tasks such as eating and brushing teeth are mandated to the left side to force her to work on retraining those motor skills.
I'm honestly more emotional today than I was yesterday. Waiting through surgery was a beast, but watching my sister have to work at things that most of us consider simple tasks has given me a permanent lump in my throat. It's her strength, grace and positive outlook that has kept me together while watching her work so hard to improve as the day has worn on. I can't even begin to express how proud I am of her as I watch her from the corner and listen to her jokes.
We're still waiting on the biopsy results, but we know they successfully removed 95-98% of the tumor and that it's a low grade tumor.
As I sit here, she's working with Sean to feed herself. He's draped a towel across her so she doesn't have worry about crumbs or spills. To that, she replied, "Hashtag O-O-T-D (outfit of the day): chicken and dumplings!" Seriously, it's so refreshing to hear and see her making light of the situation.
(And now he's making her hold out her hands and turn them over from one side to the other…to which she replied, "Heyyyyyy Macarena!")
1.24.14 a very special visitor.
(Originally posted here, January 24, 2014)
Sean made a deal with Alicia this evening. Once she finished eating dinner, Tate (their 3 1/2 year old son) could come to visit. While Sean went to make some calls, Alicia rested in preparation for her little Tater to come wear her out. I did what I've been doing most of this time…caught up on communication and beat another level of Candy Crush.
It's hard to know what exactly is going through Tate's head as he sees all of this unfolding around him. He loves his mom dearly and has definitely been aching to have her around again, but he is too young to comprehend the gravity of the changes going on. He brought some of his special wooden puzzles into the hospital for Alicia to do them with his help (the physical therapist recommended this type of thing to get her left side working hard to get back up to speed). It was so sweet seeing him urge his momma to put a piece back into the puzzle a certain way. She did a great job, but he wore her out quickly!
Alicia is convinced she'll make enough progress to be released tomorrow. I have no idea what the parameters are that might allow her to go home, but if there's anyone determined enough to make a valiant attempt, it's Alicia.
1.25.14 almost home.
(Originally posted here, January 25, 2014)
I woke up this morning to a text from Sean telling me that Alicia was being released and they needed a change of clothes and his car (I'd driven it home last night). As quickly as I could, I grabbed my camera, purse and her bag of clothes and bolted out the front door without so much as brushing my hair. Unfortunately, when the doctor finally made his rounds several hours and too many cups of coffee later, we found out that she wouldn't be released after all. It should be noted that her lack of release had nothing to do with her progress and everything to do with her dosage of a steroid that makes her nauseas still being too high. The doctor opted to keep her one more night to ween her off of the med enough for her to safely go home without having to fear getting sick and coming right back.
We understood, but it was a bummer after getting our hopes up. Alicia, however, didn't let that stop her from telling every single person that came through the door of her room that she was going home TOMORROW MORNING and the only reason she was still there was because of meds. She even added that if they said no, she'd just offer to do laps around the ward until they let her go.
Her progress in the morning was astounding. After a decent night's sleep, her ability to track me with her eyes and focus on me had improved tenfold. Every time she had to use the restroom, we used it as an excuse for her to walk completely around the ward counterclockwise (so she'd always have to make left turns). Not only was she walking faster, but she was so steady on her feet that a light grasp of a hand was all she needed to balance herself.
I think my biggest chuckle of the day was watching her walk down the hall doing a "beauty queen" wave and reciting lines from Miss Congeniality. Lunch was eaten sitting up in the chair beside the bed and almost entirely without help using her left hand. After much persuasion, her iPhone was forfeited over and she was finally able to personally check out some of the posts I've been making and their responses from you guys. She wanted to update her status and managed to type the first line before having to dictate the rest to me.
While Sean and I hung out with Alicia, my mom, stepdad and Tate went shopping for the perfect recliner at La-Z-Boy. After finding the perfect recliner, complete with a remote and every adjustable position you could ever dream of, they found out it was such a new model that they only had the floor models in stock (which they didn't seem to want to let them buy). I told my mom to bribe them with sob stories of brain tumors and surgeries and that I'd post about it on my blog if they'd sell it to us. Success! So I'm here to tell you that the folks over at the Huntsville La-Z-Boy are gracious and kind and will sell you a swanky new recliner if you go see them.
My mom swung by for a bit in the evening to check on us and then Sean went home to grab a shower and some food while I hung out and got some precious one-on-one time with Alicia. Sadly, I have to go back to my life in Colorado tomorrow morning, so I won't get to witness the triumphant homecoming. In my last hours with her, we went for a walk to a breezeway down the hall that overlooks the "mountain" across from the hospital. On that hill is a cross that's lit up for folks at the hospital to see. My sister had been talking about it for two days straight, so I just had to get a look for myself. It was pretty foggy, so it was barely visible, but I know my sister was comforted by the fact that she simply knew it was there.
On the way back to the room, we found a photo of Dr. Tao, the neurosurgeon that removed Alicia's tumor. We took a photo, and headed back to the room to wait for Sean. When he returned we were able to help Alicia get a shower and freshen up (she'd been begging for one all day). I helped tuck her in and headed back to the house for a shower of my own and what will probably only be a few hours of sleep. My flight leaves at 7am and I'll be heading to the hospital to rudely awaken Alicia and Sean for some goodbyes and hugs before I head out.
I know each and every one of you reading this will continue to lift them up in your prayers and those of you that are local will take VERY good care of them. I'm counting on you for that since I can't be here. I'd even be willing to bet that you wouldn't mind taking photos on your visits and passing them onto me so I can continue to watch her progress from afar.
My sister's words when I told her about the amazing response to the blog so far:
"This isn't my story. This isn't about me. God prepared us for this. This is our do-over. People will read about me and it will help them get through whatever they're going through. I'm setting an example for my son. God is in control. I trust Him. I'm open. I'm not embarrassed. I want you to share this."
So there you have it…you have her permission to share the heck out of this and brag about how God's perfect plan is unfolding for her to be an example for me and you and everyone she can get to.
Thank you all so much for your amazing support for Alicia. I can't wait to witness what else God's got in store for her as she continues to heal and recover.
1.26.14 home.
(Originally posted here, January 26, 2014)
I had to bust in on Sean and Alicia sleeping peacefully at 5am this morning to say my goodbyes. I'd already warned them the night before that I wanted to take a photo of them holding stickers that a friend of theirs had dropped off. They read: "igbok" and they stand for "It's gonna be ok." How appropriate given that's what Sean's response to everything we've had thrown at us has been since the beginning of this ordeal.
I also had Sean take a few of Alicia and I together, and in true form, my sis insisted I help her put on some lip gloss before he took any. I can't reiterate enough how amazing it's been to see my sister's personality shine through every moment of this experience.
I was angry I didn't get to stay long enough to accompany Alicia home today, but I suppose it's appropriate that we both made our way to our prospective homes simultaneously. By the time I landed in Eagle, CO, I'd received a text informing me of her successful return home. My mom snapped some iPhone photos of the event, which I've included below. The most heartwarming photo of all is of Tate and Alicia cuddling in her fancy new La-Z-Boy recliner together tonight. I'm so happy she is finally getting her cuddle time in with Tate.
My flights home were pretty non eventful given that I'd escaped last night with a mere hour of restless sleep, so I didn't even wake up until we'd already entered the front range of the Rockies. Perfect timing for me, however, because I got a phenomenal view of my home and workplace, Beaver Creek Ski Resort as we descended into the mountains to land. It was actually warmer here than in Huntsville was when I left, so I took the opportunity to enjoy the sunshine and went snowboarding as soon as I got home. Lucky me that I have such a wonderful outlet to clear my head right at my fingertips.
I don't snowboard on the job yet (I'm a photographer at Beaver Creek) because I haven't passed the test, but Alicia and I agreed that if she can conquer brain surgery then I can sure as heck pass a stinking snowboarding test! Now I have no excuse to give up or slack off my attempts at getting better. Every turn I made today was with her and her determination on my mind. I already miss seeing her smiling face and hearing her endless diatribes of convicted encouragement and determination. That girl just can't and won't be kept down at any cost.
So this is where all of you come in. I'll keep the updates coming your way if you keep the photos coming my way. I want nothing more than to give regular reports of progress, but I want to hear about it from those of you that get to visit her in person over the course of the following weeks and months. Please take some photos while you're there and email them to me: ChelseaRoberson@gmail.com
It's gonna be ok. Don't you forget it. Don't you let me forget it. And don't any of you dare let Alicia forget it.
