Questions Answered

Tomorrow Alexis has an appointment with a team of doctors at the Huntsman Cancer Institute. They will spend time answering questions and teaching Alexis what happens now. Hopefully Alexis and her parents will have a better idea of what to expect as far treatments and side effects, and all kinds of other things after tomorrows appointment.

But today, we wanted to answer a common question. What is a lymph node?
We know that Alexis has Non-hodgkins lymphoma, large B-cell.
Simply: Alexis has cancer in her immune system. Below is a little more explanation.
The the lymphatic system is a part of the immune system. It includes many things: tonsils, spleen, lymph nodes, etc. Lymph nodes are small, bean-shaped structures that help fight infection and disease. Lymph nodes are located along the network of lymph vessels found throughout the body. Clusters of lymph nodes are found in the arm pit, the pelvis, the neck, areas of the abdomen, and groin. These bean shaped nodes are like little fortresses placed throughout your body and work to kill off infection.

Alexis has cancer in her lymph nodes. Some of these nodes have more cancer then others, like the ones in her neck (cervical lymph nodes). It is normal for our lymph nodes to get bigger when they are working to fight an infection, just like when your tonsils become inflamed with a sore throat. However, Alexis has large lymph nodes because they are filled with cancer cells growing inside.

What is a B-cell?
A B-cell is part of the lymph system, and it's job is to help produce antibodies. Antibodies are the "fighters" who work inside the lymph nodes (or fortresses) to attack bacteria & viral infections. There are other types of cells too that help produce antibodies, but B-cells are a major contributor. The cancer has essentially turned many of these b-cell fighters into cancer cells.

What do we hope chemotherapy will do?
We hope that the chemotherapy will stop the growth and spread of the cancer. But in order to do this it has to kill the cancer cells. In Alexis case, it will kill the B-cells and the cancer cells because they are part of each other now. This is one of the reasons that Alexis will be at high risk for infection. The Chemotherapy will essentially kill a big part of her immune system and she will be vulnerable to illness because she has no way to fight it off.

But none of this information changes the fact that Alexis has a fighters spirit. She will rise to the occasion and with the help of medical staff, friends, family and intervention she will be able to overcome this cancer.

Love From New Zealand

Nothing like an email from Bronson, and a picture to make me cry, but it also made my day! Love my little brother and miss him so much! I also love that he is reppin' the purple all the way in New Zealand. I'm sending him a new purple tie this week so he doesn't have to wear the same one over and over again. He gives me so much strength and although I wish he was here to make me feel better, I know he's out doing what is truly making him happy right now. Love you Bronson! This one is for you!

Love,

Lex

MWC CHAMPS

Nothing like winning with my Best Amigos

Hey Everyone! Just wanted to give a shout out to my team, the BYU Women's Basketball team! Last night we won our last game and now, we are the Mountain West Conference Champions! Great win girls I love you all! Lets finish out the season right and take care of Wyoming and New Mexico, then off to post season! Wish I could be there but I'll be there in spirit! Love you girls!

Kimmer and I, She's a Baller

The 3 Amigos

MWC Champs 2011

Cutting down the net

Also shout out to my friends playing at Portland State. They won last night and their whole team follows my blog everyday! Thank you for the support! I Love you girls! See you over Spring Break, and I cannot wait!

Love,

Alexis

Final Game Day

Today was the last home game for the BYU Women's BBall team, also known as senior day. And BYU came back from a 16 point deficit to win the game 56 - 52! This clinches a share of the Mountain West Conference title for them in this their last year as part of the MWC. What a day!

The team sported new shirts for Alexis today and ended the season on a memorable note for her too.




Another great surprise was when 150+ Kaufsi family members and friends all showed up in purple to show their support to Alexis. The effect was overwhelming!

Final Diagnosis...

So after weeks and weeks, ok just kidding like 3 weeks we finally have a final diagnosis. I have officially been diagnosed with Non-Hodgkins Large B Cell, stage 3. According to the doctor they were so confused because this isn't normally a cancer that young people get, especially people as young as me! According to the CT scans, my biggest tumor is about the size of an orange, and they are found above and below my diaphragm. That's what makes it a stage 3 I guess. They also said its not in my bone marrow (guess Bronson doesn't need to come home for bone marrow tests) but there are lesions on my bones, but its not in the bone. As of right now my biggest worry is the fact that we have been using the color purple where in reality purple means Hodgkin's. To keep things simple we are going to keep the color purple! Not lavender purple, but true purple! It will stand for, Alexis Kaufusi has cancer and I love her! :) But for all of you people, don't worry I will be fine! The difference between me and everyone else with Non-Hodgkins is that I'm 21, and I'm freaking young, and I got a lot going for me. And I'm so stubborn I refuse to give up to this stupid cancer! Don't worry though I'll be fine. Thank you for everything you all have done! Keep wearing the purple and I will keep you guys all informed as we go through this long process! Thank you again! I love you all.

Love,

Alexis Kaufusi

Sisterly Love, and Beyond

At Daryl's soccer game tonight, the entire team (and coach) came out wearing these bands on their arms. AK 10 printed in purple. The support of a sister is some of the greatest in the world. I don't have a sister, but I now that I have three girls I am getting a new perspective entirely. I have learend that sisters are often the hardest part of the day, but often the sweetest part too. They are as different as flowers in a garden, but somehow, they are still growing in the same garden making it beautiful. But most of all, life without a sister seems like you are eating a cookie, which is great. However, life with a sister is eating a cookie with the chocolate chips.

Any way you look at it, the support of a sister is a sweet thing.

The Port

The port was no longer bandaged entirely today. Alexis is still very sore from the port itself (the biggest bulge), up to the white on her neck. She says she can feel the port and tube, especially when she moves. It is even hard for her to sit up straight because she feels the tug and pull. She took some close-up pictures though so you can see what The Port is.

The biggest bulge is where they will insert the chemotherapy. There are no pieces outside of the skin to see because the skin is the best barrier to infection. By having to poke through the skin with each infusion and medication the skin helps keep any infection out.

Gettin' Wiggy with It!

Today was the day Alexis went to try on wigs. Her doctors asked her if she had something lined up yet when her hair fell out, and aunt Lisa helped line up an appointment at a wig salon that helped Grandma Garrick. She remembered how much easier it was to match color before the hair fell out, so she took time out to schedule a small outing.

The first step, trying to hide all the beautiful hair Alexis still has
(that is a wig on the right, not Alexis hair, I didn't notice it's bad placement until too late, oops)

Next came trying on some different styles and colors.
I think this was fun, all the hair you have ever wanted to try.
She just switched out the wigs and teased them a little, and "Ta-Da!" A new you.
One lesson of the day: you need bangs on a wig

Curly with sweeping bangs

A Blown dry look with a round brush, shorter bangs

Layers and big curls

But the winner of the day, and the most similar to her current style (although it will be colored lighter so it is closer to her natural hair color when she gets it next week) is... The Jade!
Yep, each wig has a name.

Family who was gettin' wiggy with Alexis

But let's just take a moment to remember how beautiful Alexis hair is today. Her real hair.


(she debated whether to get a wig with a fountain to match Ella's, but we assured her she could grow her own after chemotherapy was over)


I can only imagine what a hard thing that would be to lose your hair. Be assured Alexis, your smile will still shine and you will still be beautiful. Sometimes the scars of living our lives don't feel so beautiful, but in the end they are what make us who we are. They are what helps us remember the road we have traveled. Everyone has these scars, some of us have scars that are more easily seen. But no matter how life marks us up, the light we emit cannot be dimmed. This light beautifies us from the inside out.

A Gift For All!

A wonderful neighbor and friend, Eva Fisher, dropped off a great gift for both Alexis and all of us. Since Chemotherapy will be starting next week, it will become even more important to limit the germs inside the Kaufusi home. Also, it will be important for Alexis to sleep whenever she can to help her body be able to fight this cancer and heal. Well, this neighbor and friend had a phenomenal idea! She made a "mailbox" so that if you stop by and want to drop off something for Alexis and/or her family, you can! You don't have to worry if anyone is home, or if you will wake up the patient, or if the timing is just not right.



She also gave a cute white board that the Kaufusi's can fill out so you know when Alexis might be up for visitors. What an adorable and useful gift that helps everyone in this process express their love and also helps Kaufusi's as they head into this next chapter. Thank you!

In the News...

Did you notice the pink shoes that BOYS were wearing on TV tonight? Many did! Michelle's phone lit up with text messages and other phones were ringing during and after the BYU vs. Colorado St. game. During the game Alexis was specifically mentioned as part of the reason that the entire BYU men's basketball team wore the bright pink shoes to help raise cancer awareness.

"The BYU men’s basketball team donned the pink shoes to promote cancer awareness en route to an 84-76 win against Colorado State University Wednesday night in the Marriott Center.

Wearing pink was something special for the the Cougars, whose coach, Dave Rose, has overcome pancreatic cancer. It also allowed the men’s basketball team to show support for women’s basketball player Alexis Kaufusi, who was recently diagnosed with cancer and had her season cut short this year." Click here for full article on Game

Also there are a lot of articles written on when rivals at the University of Utah wore their purple shirts for Alexis as well. Click here to see that article.

And here is a sign that was made by Steve Day and his grandson Landon at last nights BYU game. It means 'have courage' in Tongan.

Post Surgery

Hey everyone! Thank you for all the love as usual. You guys are all so amazing! Surgery #2 went really well I'm glad it's done and over with. Now its the waiting game, AGAIN! Its ok though because I'm learning all about patience. The biopsy isn't what hurts right now, its the port itself. Its really weird because I can actually feel the tube going up through my neck its the craziest feeling! Today was very low key which was nice. I took a nap, ate some chocolate cake, hung out with a friend, and got some new music which is always a good treat. I'm really excited to be going though and moving towards getting better. Its all part of the healing process and I can't wait to be better! Tonight my team played Colorado State. There's :24 and we are up by 9 so I am assuming we will win. I hate that I can't travel and be with my team its been really hard. But it was a great win for the team! Thank you again to everyone for the love and support. It means so much to me. I love you all!

Love,

Alexis

Update: Feb 22nd

Another day, another test. This is the good news and the bad. With every test Alexis gets closer to starting her fight, which is what she is all geared up for.

Alexis checked in to the hospital for her second surgery this afternoon. The surgery was less then 2 hrs, and everything went as planned (even though her doctor was a University of Utah fan). She had a second lymph node removed for biopsy and the port placed that gives the doctors and staff access to her carotid artery for treatments, medications and other things.

Alexis and Michelle getting prepped

The scar from the where the second lymph node was removed for the biopsy

"The Port"

Chillin' Out, Relaxin' and doin' her thing. That smile is so contagious!

Alexis is at home trying to rest, but she is feeling some pain from the port. The doctors say this is expected and have tried to prepare her to handle it. She says that MolcaSalsa seems to help the most, so I'm sure we now all know what midnight snack, breakfast, lunch and dinner will be!

University Surgery Update

Alexis is still in surgery, but they have taken out a lymphnode and are onto placing the port. She should be out shortly. So far so good. She is handling it well. There won't be any news about what they saw or what comes next until they finish biopsies and such, and they expect to give those updates on Friday.

BYU Athletics Support Alexis

Alexis has once again been surrounded by people who are cheering for her and have made an effort to show their support.



Jess Mullen, Alexis' academic adviser, took time to have 16 different sports teams sign posters for Alexis. Team members from cheer, volleyball, football, basketball, etc., etc., etc., all signed their names next to personal messages to Alexis. Then Jess Mullen delivered them to Alexis at home. These 16 posters will surely make amazing wallpaper to study over the next few months of bed rest and few visitors. And (as you can see) each poster also was decorated with the custom design AK 10 that the woman's basketball team also wears as a patch on their jersey. Thank you to everyone! But especially Jess Mullen for all she does to keep Alexis on track in school and bringing this little bit hope to home.

What an overwhelming show of love. It is moments like these that the battle seems a little less overwhelming.

Quarantine, So it Begins

Sunday was Alexis' first day of home confinement. Her doctors have instructed her that she has officially had her last day of church. They are starting to limit her outings (and also her visitors) in order to keep her healthy. So with her first day home Alexis spent some time on You Tube (of course!), watching Mormon Video Clips with Porsche. Hmmmm, I suppose there are more resources then just the Mormon Tabernacle Choir broadcast, devotional re-runs, and that sacrament meeting on TV now-a-days. I think that is good thing.

Yesterday another letter from Bronson also arrived, and he challenged Alexis to read the Book of Mormon with all her new down time. He then added, "read it and finish it." A true missionary at heart in every situation.

Corbin will also play a big part in this quarantine. He will be given the responsibility to give the sacrament to Alexis each week. What a great missionary prep experience. But Alexis laughed when I said he could help feed her spiritually each week. I wonder why?

Perhaps Sundays will be a day of rest amid the chaos of doctors visits and the roller coaster ride of this disease. It is a day when Alexis knows no new news will come in, and no new information will be collected (we hope). A day when the world gathers with their families (regardless of religious views) and takes time to renew those relationships and remind one another why they love being a family.

My Blog Debut!

Hello Everyone!

I thought I ought to post something on my blog... this is my first time blogging in general so I'm kind of new at this. I want to thank everyone for all their support and love! As well as all the prayers! My family and I really appreciate everyone and the kindness that has been shown. I'd like give a shout out to my team, the BYU Women's Basketball Team! Great win yesterday and thanks for everything! I'm expecting great things the rest of the Conference season as well as into the NCAA Tourney ladies! Also want the teams in the my conference (Air Force, Utah, TCU, and SDSU) who have gone out of their way. Thank you for the cards and gifts. Thank you to my family and extended family for always sitting with me all day long and taking care of me. Also to my neighbors who bring an endless supply of food at all hours of the day. Also to my friends, you guys always come visit me and sit with me... sorry I'm no fun but I will be normal again. As well as my friends from all over who check up on me everyday, thank you. I have the greatest friends and family ever! Thank you everyone for everything! Lastly, Thank you to my cousin Hillary for making this amazing blog!! I love you all and don't worry, I got this! Give me a few months and I'll be good as new, just without the hair. Thank you again! I can't say that enough...

Love,

Alexis

Cancer Party Time!

Tonight Blake Roney hosted a Cancer Party for Alexis and her basketball team (and of course the Kaufusi family came too!). The night was full of wipe outs, catching waves on the flo-rider, a little basketball in the pool, and some serious hot tub time.

The end of the night was highlighted with Alexis cooking pancakes for all. And if there is something I want to hire Alexis to cook for me, it's pancakes and omelets. WARNING to those who indulge: you will dream of them all night long, and the breakfast you eat in the morning will not taste the same.

Good times, good friends, and I hear Alexis may have even squeezed a nap into the evening. Let the good times roll!

Game Day

Today Alexis attended the BYU vs. TCU Women's Basketball game. At the Marriott Center today they had the Huntsman Cancer Institute present as a part of cancer awareness and women's health.
Highlights of the day that honored Alexis included (but I'm sure not limited to):
* The Team sported a new purple patch on their left shoulder to honor Alexis, #10.


* The BYU team had pink warm up jackets (as fashioned on Alexis as well) to honor women's health and cancer awareness
* The entire team also had pink shoe laces on
* After her introduction, a TCU player ran over to Alexis and delivered a nice card with a hug.
* Friends and family there to show Alexis they are supporting her.
* BYU won!

Update: Feb 18

Today Alexis spent the morning at the Huntsman Cancer Institute. Most of the time she was inside a tube having a head to toe PET scan. She couldn't listen to music or have any medications and had to spend her hours napping off and on and entertaining herself. She also received a few CT scans on specific areas. Dr. Glenn continues to thoroughly look and evaluate the tumors and the cancer before beginning chemotherapy. At this point she anticipates treatments to begin by the beginning of March.

On Tuesday Alexis will again visit Huntsman (and the UofU) for surgery. During the surgery they will remove another lymph node from her neck. A doctor specializing in Lymphoma Cancer will assist with this and evaluate the lymph node after its removal. Also, at the same time, they will put in a port in the area of her clavicle (just below shoulder). This port is to give the doctors and nurses access to Alexis veins throughout her treatments. They anticipate this port to allow them to draw blood, give medicines, and administer chemotherapy. Hopefully the port will remain in place and not get infected allowing them to use it for approximately 6 months.

Some days (in the life of disease) are full of waiting and anticipation. Some days are full of news and change. At the end of any of these medically taxing days it is easy to feel so many things that you feel nothing. Other times you feel so much that tears escape and you have no certain reason why. Whatever the end of the day brings, we rally around Alexis and her family and hope that during some hour they will feel some peace and find a few reasons to smile.

A Good Night Out...

Tonight Alexis ventured out to Corbin's Senior Night with the Timpview Basketball Team. She cheered Corbin on while he showed off his talent, took time to play with all the kids, gave out lots of hugs, and made sure to capture a few moments on camera.

Alexis with her cousins...actually her cousins kids, so what are they technically?

Steph, Alexis & Corbin celebrating a good Rival win

Alexis and her "little" brother...she's done such a good job with him!

At this point Alexis knows that there is a day on the horizon when she will no longer be able to venture out into these types of crowds. Her immune system will not be able to handle all the things we each carry around and spread around. It was a great night to be out and feel the thrill of victory, accomplishment, friendship, and love. Good memories are invaluable.