Monday, July 22, 2019

Ryan’s Chemo #3

July 1, 2019
Monday morning started just like every chemo morning we’ve had. Getting breakfast and heading to the center . We got taken back to get Ryan hooked up and started. Soon after we came in the back the nurse informed us that our appointment got cancelled for his follow up neulasta. Immediately I was livid , I asked why and she told us because our insurance will no longer approve it. I almost started crying right there . The one thing that has been so important to me this whole time was knowing that shot was keeping him healthy. Ryan’s blood work is already on the edge with the shot. I asked them why and they said because insurance wants to see his white blood cells drop before they will approve it. I’m so terrified of infection and knowing that Ryan is at higher risk has really stressed me out. We tried to see if we could pay out of pocket for it but sadly the shot is $6-9000 and we just can’t afford that per shot. They got started with his meds and Ryan started feeling a little sick during his first round. Each time he goes in the side effects become more and more severe. During this visit his neighbor had an allergic reaction to her antibiotics. She started ringing her emergency bell and the nurses started running . Soon she had 6 people surrounding her giving her shots and making sure they didn’t need to call the ambulance . Poor lady was so embarrassed and kept apologizing for having an allergic reaction. We left for the day and during the week ryan definitely felt more weak, tired and nauseas than he normally does . His hip pain is doing better again but we’re hoping this is more permanent and that the cancer and chemo are not playing tag. I noticed this past week he looked a little more sick than normal and then I realized why, he’s losing his eyelashes and eyebrows. I think this bothers him more than losing his hair. He has his fourth chemo tomorrow and then we re image, we are praying and looking forward to his results . I’m praying the cancer is gone and life can go back to being somewhat normal! Thank you for all your continued prayers and support.

Sunday, July 14, 2019

Marissas Surgery Journey

It was the night of May 18th when I begin to feel a little sick and  started having some belly pain. I woke up around 3 am and could not stop throwing up. A couple hours later I begin to have severe belly pain and told Ryan that we needed to go into the emergency room. I was taken back and had my heart checked out because of some chest pain . They decided to do an X-ray and found that I had something called colitis and enteritis . I was given a gi cocktail and pain medicine, I started to feel better so they sent me home. Two hours later I was in severe pain and told Ryan something was wrong . We went back in and they did ct scan of my belly which showed that I had a large amount of fluid in my belly and my appendix was swollen. The doctors believed my appendix was perforated and they took me back for emergency surgery. I was really upset because I knew that I wasn’t going to be able to care for brinley while I was recovering . I was taken to pre op where I received ddavp a medicine for my bleeding disorder and they drew special labs . The surgery took a lot longer than expected and Ryan sat waiting . The doctor came and spoke with him to let him know that although my appendix was swollen it was normal. They took it out because of the risk of rupture anyways . He called in an obgyn during the surgery who diagnosed me with endometriosis. She also found some cysts and abnormal findings with my uterus . The doctor said all my other organs looked fine but they didn’t know why there was such a large amount of fluid.  Recovery was supposed to be easy but it was horrible ! I had horrible sharp pain in my shoulder , pain in my stomach that was unbearable and I continued to vomit. Two days later the doctors were trying to send me home . I began to cry knowing something was still wrong. Soon after asking God please just let them keep me,  Dr. Charles  came in and said something didn’t seem right I should be feeling better not worse. He asked me if I ever had any gallbladder issues and I told him about the attacks I had been having but every time we came in they said my gallbladder was fine. He ordered a hida scan to look at the function of the gallbladder and sure enough even that was normal but barely. I started having serious pain after the test which is a sign your gallbladder is not actually working. He decided to go with his gut and just take it out. Thank God ! The next day I was in surgery again and honestly I didn’t feel much more pain then I was already in . He told Ryan that my gallbladder was odd is shape and was green and tan . I showed signs of chronic infection and sure enough the biopsy came back with chronic cholecystitis . Overall I’m not having anymore gallbladder attack’s and do feel the surgery was very beneficial. A week later again I went back in because I developed pancreatitis. So now we had another organ that was not happy. Fast forward to now I am not doing that great and my liver isn’t either I’ve been diagnosed with Ascites again and my liver enzymes keep elevating . I am seeing some specialist and we are praying for answers along with healing !! Thank you all for following our journey I know it’s been a rough ride for the both of us but it’s becoming more and more obvious how big the miracle is going to be !!

Monday, June 17, 2019

Chemo Treatment #2

Monday June 10th, 2019
Today was the big day , the day we introduced another new chemo. This one is called Adcetris it’s a target drug for the specific cancer Ryan has. Adcetris does not have your usual side effects it has some really rare and scary conditions that can happen. We knew to expect him to feel worse but we weren’t sure how much worse. We went it in at 9:30 and were taken back very quickly to the chemo area. They quickly started the access to his port and blood work. Ryan has always used the numbing spray when they access his port but this time he denied it and he said it was actually less painful. They ran his labs to make sure he was okay for chemo. Everything looked fantastic !! This course started with steroids, nausea meds then they did a round of Benadryl for the new chemo. The whole process takes about 4 hours from start to finish . The one thing that irritates me is that they do not have anywhere besides swivel stools for patients family to sit! Ryan really doesn’t feel much from his treatment at first besides a burning nose. We’re working on getting the burning pain under control so it’s not so uncomfortable. We went home and he was feeling great until about 9pm . This round was a little bit stronger and the increase really affected him. He had severe nausea and was extremely tired. His whole body was so week I was helping him get in and out of bed .

Tuesday - Sunday the 17th
We went it in on Tuesday to receive Ryan’s white blood cell shot called neulasta.This shot isn’t painful but for some reason it makes Ryan want to throw up when he receives it . The doctor discussed we have two more treatments then we will scan to see how the cancer is reacting. If it’s almost gone ( in Jesus name it will be ) they always do two more after the cancer is gone and then he will be considered in remission ! My parents take us to Disneyland every Thanksgiving so we have a goal in mind !! The doctor feels like Ryan’s body is responding to chemo well already. He’s had a decrease in fevers, night sweats and the bone pain from his cancerous lesions. We are so excited about progress.

The rest of the week Ryan has experienced the usual side effects of chemo and has spent the days trying to relax. Friday I went and saw Ryan’s doctor for some unusual blood work that I had and got a few more test done. My T cells are high and my B cells are low . It could mean anything but there’s a few specific things the doctor will be looking for . Depending on how those labs look will determine weather or not I will need a bone marrow biopsy . We have a couple scans for me and hopefully some answers . We joked with the oncologist that we now both get to bug him .

Saturday Ryan did some yard work and it wiped him out extremely bad but he still wanted to go to prayer. Ryan was told not to go to church during peak days 3-10 for his high risk of infection. He went anyways and did not wear a mask and guess who got sick. Ryan woke up on Father’s Day very sick with a sore throat and sinus infection . He was so sick we had to go into the er where they did some labs and he received a bag of antibiotics. Father’s Day was the first day Ryan really felt neuropathy in his hands and it’s really bumming him out.

Thank you for all your prayers , support and love. We had a really long and tiring week I couldn’t even get a moment to update !

Sunday, June 9, 2019

Ryan Losing His Hair

I want to start off by stating that i am so sorry for a lack of updates, I have had major issues with the website and bog. We have everything back under control just in time! This past week has been very eventful for us. I have multiple health issues and when ever i am stressed my body shuts down and does weird things. Last Friday night we ended up in the ER because i had a hemiplegic migraine which mimics a stroke. Ryan was not able to come in so he just slept in the car while i was inside.

Ryan is at a point where he has good days and bad days. I am sure this is a common thing for most people on chemotherapy. The problem is he does too much on his good days and makes those bad days much worse. Hes started experiencing some new symptoms and also started having hair lose. I told him he was starting to thin out and he kept telling me no. Sure enough the next morning he woke up and his scalp was extremely tender, which is a sign that the hair is turning lose. The next morning he had several bald spots and his hair was coming out in chunks. We decided it would be best to just shave it off to help with the amount of hair im cleaning up. He is definitely getting used to it as am I. I keep walking around the corner and I see him and almost have a heart attack forgetting its just him lol. Brinley was very confused by his hair and kept giving him weird looks. I wish i could of captured it. She just thinks its funny to rub his head. I want him to feel handsome and loved from me as much as i can. I've tried my best to compliment him and show him some extra love as i know that a man would never admit it but sometimes this kind of change can be hard on them too.

There isn't much more to update with Ryan as we didn't have any Doctors appointments this week. However i did see an allergist and got an allergy prick test only to find out i tested positive for 33 allergens. I'm allergic to all grass, some trees,weeds,bushes,mold, and animals. The test did not include any food allergens so i wont be able to find out that until later. Those of you who don't know Ryans a landscaper and is around all of that consistently lol!

Thank you all for continuing to read our journey i will have more major update this week as Ryans chemo is tomorrow! We appreciate all the love and prayers!

Thursday, May 30, 2019

Zion Trip

Saturday May 25th, 2019
We woke up and had Cracker Barrel a tradition for every Zion trip , then drove up the mountain and unpacked my parents motor home. The main reason we love going to Zion is going tubing down the river. The first thing we noticed while driving is how high the river was at the bottom. It was very high and moving very fast. I will attach some photos but really they do not do it justice! My little cousin came and was only there for a day, so she asked if we could go tubing while she was there. We got dressed and headed out. This was the first year Ryan wasn't able to come into the water. He wasn't healed yet from the port and didn't want to risk an infection. The moment i stuck my foot in the water it went numb, yes literally like ice ( 38 degree water). My mom purchased new tubes that had no handles and the holes were too large so we kept slipping. Me and Caleb flipped our tubes , I took about 75% of the rapids down without a tube. I hopped on my stomach just in time of the major drop. We made it around the corner only to realize the water was too cold and fast to continue. Next time we will be getting our normal tubes! We spent the rest of the day relaxing, making smores and playing games.

Sunday May 26th, 2019
I think Ryan really began to feel tired. He was not resting because he is stubborn and thinks he can tough it out. We've already had about 50 million tiffs about him doing too much. Ryan still had some side effects from his shot such as nausea, increased hip pain and a  new symptom vision changes. We will be getting him an eye exam to make sure there are no complications. Ryan spent the day watching me pull Brinley around and around in her little wagon. I also got to take her swimming and she started kicking her legs ! We stayed up super late playing games since that really all ryan can do.
Did i mention that we also slept in a tent because he wanted to and i wasn't going to let him be alone.

Monday May 27th, 2019
We had breakfast and packed up to leave it was raining and so beautiful! I will attach pictures down below. Ryan has this idea of keeping things as normal as possible and decided to drive back to my parents. He handled it well but was very tired by the time we got home. He barely ate dinner and went to bed early.

Tuesday through Thursday
There's not much to update on we have spent the past couple days getting things back to normal. Brinley has been extremely clingy but very happy to be home with momma. Its been a blessing to spend time with Ryan. He was constantly working and I felt like i never saw him. We have done our best to look at all the positives of this situation even though its weighing heavy on us. I Pray daily that God gives my husband the strength to fight !

Saturday, May 25, 2019

First Post Chemo Visit

Thursday May 23rd, 2013
Today was Ryan's firsts post chemo visit with a PA. We were instructed that after he got out he would need a shot called Neulasta. Essentially the shot is supposed to spike the white blood cells to counteract the low white blood cell count that normally happen with chemo. We sat in the waiting room and the first thing we observed is how many older people were there. Shortly after we arrived we were told of the cost of the shot was $2,000 out of pocket the normal cost without insurance is $5,000-$7,000 (ouch). Ryan will receive one of these after every chemo treatment so far that's 4. We got taken back to the room and Ryan was complaining that he was not feeling so great. I immediately went through the cabinets to search for anything he could puke into. The PA came in and asked us some questions and discussed with us the plan of action. I immediately noticed that she kept using the word remission. I asked her why she kept saying remission instead of cured. When we found out that Ryan had lymphoma we kept hearing the word cured. She explained that the anaplastic part of the cancer makes it harder to treat and that the goal is to get him as close to remission as possible. She also kept saying his prognosis, I asked her what was his prognosis. I was told they cant give us one because its so rare its the first case anyone has seen within Banner network. Afterwards they came in to give Ryan his shot, not long after he received it he got sick. I grabbed the puke bucket from the cabinet just in time. I felt so awful but also glad it happened at the office because they were able to take him back to the chemo room and give him nausea meds. This medicine is given straight through the port and works for 72 hours. Ryan started feeling better and after resting all afternoon he invited his parents over for some company.

Friday May 24th, 2019
Today was the day we were supposed to leave for Zion. We have had the trip planned and paid for, for over a year and Ryan really didn't want to miss it. We asked the doctor and they had no problem with him going as long as we took precautions. We at last minute hoped in the car and raced straight to Tuchan theater to see little mermaid. We are finally reunited with our angel!! She kept hugging me and wouldn't let go of me it was amazing. We watched the play and the first half was so bad that I couldn't stop laughing. It was almost more of a comedy show then anything. Ryan handled it well but was very tired and weak. We went straight to the hotel and to bed.

Thank you for all the love and support. We have received an outpouring amount of support and love during this difficult time and we appreciate it so much.

Wednesday, May 22, 2019

First Chemo Treatment

Monday May 20th, 2019
Ryan started the first chemo treatment which consisted of three major chemos. The first one was hung with a bag on it to protect it from light . It ran for about two hours before they came in with the second. The second chemo is red, in a giant syringe and has to be pushed extremely slow. It took about twenty minutes from start to finish. The third chemo was also hung and ran about 25 minutes. During treatments Ryan immediately noticed tingling in his nose and a really strong metallic taste. They warned him about nausea but dosed him with several nausea medications just in case. Afterwards Ryan felt pretty good and we went to bed for the night.

Tuesday May 21st, 2019
Ryan woke up and was extremely flushed, his whole body was red and hot. He said he was starting to feel tired and almost flu like. He wanted to go on a walk with me to the cafeteria. We ate some lunch and by the time we got back to the room he was very pale and so tired he could hardly keep his eyes open. He spent the rest of the day in and out of sleep. Last night was the first time he started to feel nausea's so he asked for some medicine and also a sleeping aid. Side note last night was my first service back to church and it felt great! I cannot wait till Ryan gets to go back.

Wednesday May 22nd, 2019
Ryan has become very sensitive to smells and things are starting to taste different. I keep teasing him that he now knows what its like to be pregnant. Overall Ryan feels like hes gotthe flu and not much more. They explained to us that next week will be very hard for him as that's when the blood cells begin to drop and really respond to chemo. This morning we were waiting on several test results. We got his bone marrow biopsy back and it looks amazing!! Thank you JESUS!!! It still means he has stage 4 because its reached the bones, but its a good sign for future treatments. The bone marrow is responsible for cell making and because his looks so great it means that hes at less risk for infections. Two days ago we also received news that his procalcitonin levels were high indicating a risk for sepsis ( a serious blood infection). The doctor also said his x ray showed some sort of collapsing lung. After further testing they "believe" he got a false positive for Sepsis from his cancer. I ''KNOW'' it was the hand of God. Ryan's fevers have disappeared and night sweats have improved. I know we have a long journey ahead of us but we are so grateful for the Lords touch on our lives.

Thank you to all who have shared our story, the donations we have received have tremendously helped. Cancer is an expensive disease but we know the Lord will continue to provide. We love you all!!

Monday, May 20, 2019

Journey to a diagnosis

It all started the week of April 22nd, 2019 when Ryan started complaining of some hip pain and just overall not feeling well. Saturday rolled around and the pain in his hip was so severe he could barely even walk. We went into the Emergency Room and they said everything looked normal and sent us on our way. We got home and I decided to look at Ryan's labs just to check everything out, and noticed that his lipase was elevated to 287. Immediately, I called the ER doctor and asked why we had not been told about the elevated numbers. She had completely missed the test result and asked us to come back. When we returned, they preformed further testing and said he had pancreatitis. However, they said he was handling it extremely well and we could go home. The next day Ryan started to run a fever so we returned to the ER. His lipase levels were elevated to 1,300 this time. But, once again since he was feeling so well, we were told we could just go  home.

Saturday May 4th, 2019 Ryan started to complain that the pain in his hip increasing and he was now feeling pain in his upper stomach. We decided to return to the ER again, his lipase level was now at 21,000. Immediately, they admitted him and started him on a liquid diet. They kept him for a few days to monitor his numbers and said he was doing well and that he would be able to leave in a few days. Ryan kept mentioning to the doctor that his hip was hurting and asked if they would please check it out. The doctor ordered an X-ray and it came back normal. They decided to do an abdominal CT scan and it showed his liver was filled with cysts. They couldn't give a reason as to why his liver had cysts, so they said to follow up with a primary doctor. He was doing well, just had a lot of pain so they discharged him and sent us on our way.

Sunday May 12th, 2019 We drove down to Vegas to spend Mother's Day with my grandma and my mom. My grandma also is suffering from cancer and was not doing well. That night Ryan was in so much pain, I told him let's just go to the hospital and get checked out since my mom was available to watch the baby. When we walked in, we told them that the pancreatitis felt worse and the hip pain was severe at this point. They did a CT abdominal scan and some blood work. The ER doctor told us that the CT looked fine and we just needed to wait for the blood work to come back. When we asked him about the hip pain and he told us that it was just ''constipation''. ARE YOU KIDDING ME ??!!! They got the labs back and said that his pancreas was still not doing well and that his liver enzymes were elevated. The ER doctor came in and let us know that they would be admitting him for further testing. After being admitted, the doctor ordered a CT scan of his chest and an X-ray of his hip. From those we found that he had lung nodules and a lesion on his hip that could be cancerous! I guess it wasn't constipation after all! We got the results of the CT on the chest that showed a mass in his chest, lung nodules, and lesions in his liver and pancreas. The doctor did a biopsy of the mass, and at this point we still didn't know if this could be cancerous. When the oncologist walked in, I just had a feeling it was not going to be good news. I told her ''hold on my husband is in the restroom he will be just a minute''. She responded and said ''That's okay we got his biopsy results, he has stage 4 lymphoma." I started to bawl. My husband walked out and she dropped the news the exact same way. The news was such a shock to us at this point, that we almost didn't believe it. We took a few minutes to absorb the information before we began calling all the family to tell them the devastating news . We were released and told to go straight to the hospital in Phoenix.

Monday May 20th, 2019 Today is the first day of chemo. We are praying for a healing and for strength for both Ryan and I. Thank you to all who have continued to pray for us!!

Our Beginning

Our journey started on June 15th, 2013 when Ryan my husband asked me to be his girlfriend. It was an instant connection and i just knew i was going to marry him. We spent our relationship traveling and falling more and more in love. The weekend of November 30, 2014 i was involved in a semi accident. After the accident i became very ill and my body just started shutting down. We spent our time now looking for doctors that could find the problem. Knowing that i was going to be sick for the rest of my life with Lupus Ryan still knew we were meant to be together. December 17th, 2015 Ryan asked me to spend the rest of my life with him to which i replied duhh. We were married on February 13th, 2016. It was the best day of my life i can still remember all the little details and events that happened that day. We started our journey as a married couple and man it was hard. I grew up spoiled and for once i had to pay for power, rent, insurance all on my own. Six months after we were married we bought our first home. It was just what we wanted and knew this was where were going to build a family. So that is what we did we started trying for a baby even though i was told i would never have children. Month after month i saw negative tests and became discouraged. We are a family of faith and believe in the word of God. We knew we were going to have a miracle. In July a preacher visited our church and made a prophecy over us ( God will give you the desires of your heart you will have a baby girl). Sure enough the next month we found out we were pregnant and i just knew it was a baby girl. I remember the first ultrasound and the tear of joy we had. Soon we realized what a high risk pregnancy we were going to have. I spent the majority of my pregnancy in and out of the hospital. at 37 weeks pregnant i was induced and after having a smooth 7 hour labor and 10 minutes of pushing we had our angel. She was everything we dreamed of and more. Everyday is a new day of discovering for us and her. We couldn't imagine life without her. We just celebrated her first birthday! wow time flies.. just recently life got hard we started having major medical problems with my daughter and I. Right after things started looking better we had a sewer flood in our apartment and had to find a new home. That's where normal life ends and the real chaos begins. My next post will be our journey to Ryans diagnosis. Thank you for all the love, support and prayers for the Loe family.