A Happy Ending...

So last week Alexis could be spotted wearing these stylish shades up at the hospital. And I'm sure this will surprise you, but it wasn't because she was trying to be a trend setter. No, they served a purpose.

Alexis has been seeing spots in her vision and has been struggling with seeing out or her peripheral vision. So, Dr. Glenn sent her to see a doctor at the Moran Eye Center. He examined her thoroughly and then told her that she probably had detached viscous. This is a common problem...in 60 year olds! However, he also thought this problem was fixable and something he could work with.

Then he said, just to be sure, he wanted to send Alexis for an MRI of her head. He wanted to be sure that there were not tumors in her brain. As you can imagine, hearing this as a worry for the doctor was a new monster of worry to Alexis & her family. Brain Cancer? Really? Didn't he know Alexis just finished her last chemotherapy treatment? Now everything anyone said was stipulated with, "but this could all change depending on what the MRI shows."

So last Friday Alexis had her MRI. And then the waiting game began. But this was a waiting game that was so familiar with all it's feelings of uncertainty, fear, and wondering that the question of "what if?" returned to hang above Alexis' head for days. It felt like February all over again. But somehow it was worse. Worse because you know how much there is to lose. Worse because you know how hard Alexis has fought. Worse because Alexis has taken two steps forward and no one wants to take any backwards. Worse because it felt like Alexis had just climbed the mountain, and now perhaps, there was another one waiting through the fog. This was definitely a familiar position, but in no way was it easier.

But today the call came. A call that said, "the brain looks great!" The relief that washed over every one and any one who heard the news was the kind of relief that can only come after having been through this experience called cancer. Somehow it was easier to breathe. Alexis shed some tears, and of course Michelle joined in too. A Blessing, A Miracle, A Joy found in the midst of war. The song ran through my head, "I can see clearly now, the rain is gone. All of the dark obstacles disappear. Here is the Rainbow I've been waiting for, it's gonna be a bright, bright, bright and sun shiny day." And despite the snow falling outside, today was a day full of sunshine. The kind of sunshine that warms you from the inside out. It was a joy that can come only with the relief of victory.

So onto the next thing! Basketball training, getting her energy back, a visit to the Moran Eye Center, and eventually a follow-up PET scan the first week of June to check on those shrinking tumors...none of which are in the brain.

Come Celebrate

Come and celebrate with us. On the Eve of Alexis last Chemotherapy we will be having a party with her at Fat Cat's! (see below for details). We will be raising money and having a great celebration to the end of this era of cancer treatment.

Fundraiser with Alexis Kaufusi!

Wednesday, May 11, 2011

6:00p - 9:00p

At Fat Cat’s Bowling in Provo

1200 N University Avenue

$10 per person = a game of bowling & pizza & a drink!

ALL proceeds go to Alexis Kaufusi Cancer Fund

Don’t miss - Buying a decal, a bracelet, or a necklace And there will be a silent auction

Also Bring a flyer into Costa Vida at any time on

May 11 and they will donate 10% of your purchase!

Words from the Heart

One Sunday, Alexis shared a written testimony with her ward in Relief Society. Now we are all blessed to be able to read it, and feel it. It is a marvelous blessing, I know for me, for Alexis to share her strength and her innermost feelings with those of us that are standing by, amazed by her strength. With Easter so close it is a wonderful thing to be reminded that the Atonement is also for our burdens, thank you Alexis.

Jeanne Muir lead into it reading this by talking about how we receive blessings when we keep the word of wisdom but that doesn’t mean that we won’t have trouble with our bodies. These are the words that Alexis has been kind enough to share:

From a young age my life has been dependent on my body to complete not only the daily activities, but also the activities that make me as a person. Basketball has always been a part of my life and always will be. Keeping the word of wisdom has helped me to be able to "run and not be weary... walk and not faint" because I take care of my body and try to treat my body as something of value to me. When my body isn't feeling good or something isn't working quite right I always notice!

Being raised in a strong Mormon culture and strong family has also helped me to understand the blessings of obeying the word of wisdom. By keeping the word of wisdom not only have I been blessed with a strong body, but my brothers and sister and even my parents have been blessed with strong bodies. Bodies that like to work hard and that can take a hit every now and then when we're on the court or field. Even the trials in our lives are blessings. Sports injuries seem to be a huge trial in the life of the Kaufusi Family. But we always over come them stronger than before and more ready and focused.

Recently my trial isn't a sprained ankle or a blown out knee, my new trial is cancer. It was hard to be to believe that at such a young age I could have cancer. That my body was dying at 21 and I had no idea. My journey with cancer can be seen as another trial to mark up on the list of trials myself as well as my family has been given, but this is no trial. Cancer has been a blessing in my life and no one really understands that better than me. Since my diagnosis, I have been able to bring my family closer to me. I have been able to bring friends in who I never see. I have been able to see the value of life so much better than before. And that there's more to life than making my free throws and getting an A on my final exams. I have been blessed with this journey called "Non Hodgkins Large Diffused B Cell Lymphoma" to help me realize what I need to change, what I need to do to become a better person. And this journey is making me stop, think, and look around at the beauty that is around me. It's truly been a blessing.

It's also brought me closer to ward members and neighbors. As I fight I want to thank everyone for all their kindness and their support. Thank you for your love and prayers, they mean the world to me and I know they are working. I thank Heavenly Father everyday for a few things.
1. For the journey of cancer and for what I am learning from it
2. I thank Him for such loving kind ward members who are making this easy. And lastly,
3. I thank Heavenly Father Bronson is on a mission during this time. He is far to sensitive and emotional for the cancer world.

The blessings of obeying the word of wisdom are there. We just need to humble ourselves and look for them.

Cancer Cannot...

Picture from Yesterday at Chemo

Today Alexis is up at Huntsman having her follow-up visit and getting her injection. She was so sick she spent the entire car ride laying down. Eating has been a task that has evaded her all day.
So for today's post Alexis wanted to share a part of what she sees every doctors appointment. And on a day like today, it's words are particularly comforting:

Cancer is so limited
It cannot destroy Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy People
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal eternal Light
It cannot conquer the Spirit

Alexis is blessed to have all of these positive traits within her and around her. It is the love of others and the kindness that each of you have gifted and delivered through acts and words that gives Alexis all she needs to endure these days of sickness. She also is blessed with a spirit of courage and hope that she makes seem so natural. The path that cancer requires one to travel is one of necessity, but through hope, friends, family, love and courage, Alexis path has a little more sunlight filtering through to light her way.

We love you Alexis, and we all are sending our love your way. We all know that cancer cannot...

You might get sick if...

Chemotherapy is a rough and tough drug. That's why it can beat cancer. But it also has many side effects. I found these statistics about nausea interesting:

You are more vunerable to have nausea and sickness after chemotherapy if you have one of the following:
1. You are a woman
2. You are younger then 50
3. You have a history of motion sickness
4. You have a history of anxiety
5. You're prone to nausea during pregnancy or sickness
6. You have a history of drinking little or no alcohol

Well, poor Alexis, you have at least 1/2 of these! Luckily there are good medications and plenty of salty, bland foods & sleep. Some days are surprisingly good, others are just tough. And like the tough chemotherapy medications, Alexis is equally tough in her battle. Her optimism is constant and her strength endures! Love you Alexis.

Another Day, Another Battle

Today Alexis spent a good portion of her day fighting nausea, a metallic taste in her mouth, loss of appetite, & fatigue. When she arrived at Huntsman this afternoon to visit Dr. Glenn the doctor was worried about her vital signs, particularly her low blood pressure. They changed a few medications and added a couple new ones. After about an hour they released her to go home, and she reported feeling better then she had all day. Hopefully this will improve the rest of her weekend and week as well. It is a good start!

Approximately 24 hours after each chemotherapy treatment Alexis will receive an injection of Neulasta. She needs this medication because chemotherapy's job is to kill all the fast producing cells (like cancer cells, hair cells, white blood cells, etc.). So this Neulasta is given to help produce new, healthy white blood cells, which will consequently help reduce Alexis' risk of infection. The side effect they talked to Alexis about is a feeling of soreness in her bones, because it is in the bone marrow that white blood cells are produced. She can expect this soreness to start tonight and into tomorrow, according to the medical staff.

Alexis continues to be strong through every symptom, every hour. We talked a little about fatigue today. It made me think about how we have all experienced times in our lives when we are completely exhausted. When we are "running fumes." It is a physical battle to keep moving, keep functioning. With cancer, Alexis not only is exhausted from not being able to sleep, but her body is working all the time to get rid of this intruder. It not only tries on her physical energy, but her mental energy as well. I imagine it is level of fatigue you have to experience to fully understand how extensive it is. Fatigue wears on our ability to function, to think, to be patient, to feel, to know what to say, do, or feel. It is an all encompassing challenge. Alexis continues to handle all that this cancer brings her way, including her fatigue. I (like many of you) am amazed at how she pushes through each and every little battle in this war. That smile we all love persists!

Update: Chemotherapy #1

Happy, relieved, hot, cold, numb, dizzy, tired, itchy, swollen, bored, hungry, fascinated, educated. These are just some of the things Alexis felt today during her first chemotherapy treatment. There were moments for every feeling it seemed. Leave it up to a day in a medical facility to cover a range of emotions! And often a feeling was revisited again later. But at the end of the day (which did end at about 5pm), it was a day well spent in battle.

Alexis woke up before the sun this morning so she could get all the way to Huntsman by 6:45am. Then she sat. She sat, and she sat, and she sat. Occasionally she got to take her IV pole for a short stroll past the other patients who were sitting around. Everything went through her port today, so it was nice to not have any real "pokes" to deal with. They started with the "R" treatment and it took hours to infuse. At one point Alexis started to have a reaction to the treatment (which is not uncommon these first few times they said) and so they had to stop it, flush it out, give her benadryl, and start again. She did great. Amazing in fact. Then they moved onto the chemotherapy that had to be administered by the nurse. It made her feel a little flushed, but that too went well! Lastly came a final IV chemotherapy medicine, and this went off without a hitch.

Keen, RN giving some chemotherapy (yes, this one was red!)

Some of Alexis' support group

What happens between watching TV & listening to her iPod...

On her way home

And so went the day of a chemotherapy patient. It was pretty text book, according to the wonderful medical staff who helped. Alexis felt a little light headed while trying to leave, but they said the worst of the side effects won't really come about until Friday & Saturday.

It is a good thought to know that at this point in the plan, 1 of 6 treatments is done. That is 20%! It is a definite beginning, and Alexis is very ready to be started!

On the way home Alexis & her parents were touched by the thoughtfulness of their neighbors once again. Sherrie Boxx had tied purple ribbons and balloons all along the street! They were on street signs, trees and in their yard. They were lifted up by this kindness that showed how much people around them are thinking of Alexis as she works through these days of trial. Friendship is a word that seems to by synonymous with comfort now-a-days in the Kaufusi home. So thank you dear friends for all the comfort you give.

Update: March 1st

Here is the information Alexis found out this morning while meeting with the doctors:

Diagnosis:
Non Hodgkins T Cell Rich Cell, Large B cell Lymphoma ("diffuse" large B cell), Stage 4.

In english: it is good because it is a fast moving cancer, and these have a history of responding better to treatment! Also positive because her lungs, heart and pancreas are all looking good. Her liver is involved as well as her sacrum (tail bone area). She has tumors throughout her abdominal area and into her neck/clavicle area.

Treatment:
Chemotherapy will start this Thursday, and Alexis will receive treatments every other week for 6 weeks. The chemotherapy they will be using is called RCHOP.

The largest tumor is in her pelvic area, so she will require radiation on this tumor after the chemotherapy treatments are complete.

There was also a lot of teaching done about what side effects of chemotherapy she should anticipate and what she can do to help relieve those. From special diets to prescriptions, Alexis has an armory of tools to help her cope and give her some extra strength.

Misc, but important!
Alexis hair will fall out about 2 1/2 weeks after her first chemotherapy treatment.
Visitors are welcome during chemotherapy, but they must be healthy and wash their hands well.
Alexis gets to go with her basketball team to the tournament in Las Vegas! Hurray!

As overwhelming as all this seems, there are many bright spots and tender mercies, and Alexis continues to be strong and optimistic as always! After waiting 4 weeks for an official diagnosis, 6 weeks of chemotherapy (12 weeks total) doesn't seem quite as long as it did a month ago. It is a good thing to be started on the battle instead of still in the waiting area.

REMINDER: On Thursday, March 3rd, we will pull our efforts together to fast and pray for Alexis. This is the first day of her chemotherapy treatments, and she has hand picked this day as one that may require a little extra strength that can only come from a higher power. I don't know about everyone else, but it is a hard thing to watch this battle from the sideline, so I am grateful that our Father in Heaven has given us prayer and fasting so that I can do something to try and help.

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.

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.

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.

On February 6th Alexis has her first surgery. They removed a lymph node for biopsy. It left Alexis with a small scar in front of her left ear.

On February 7, Alexis was diagnosed with Hodgkins Lymphoma. And so the battle began.