The Ups & Downs After Round 2!

Hey everyone! 

    It’s Ryan again, it’s been over a week since our last blog post and it is nice to write about a few good things. Round two of Liquid Sunshine was an absolute success! María did great everyday! The best part was that although some days she was feeling a little nauseous, she didn’t puke once the entire treatment! Her pain was also under control the entire time and there wasn’t a day that she was in so much pain they couldn’t control it. Everyday that we were in Oslo, María woke up with a positive attitude and wanted to continue the look good, feel good, do good motto. We think this played a huge role in her mental health and overall it impacted her physical health in a positive way. 

    The first day of treatment we got a late start and ended treatment around 11:30pm. So the first day was pretty exhausting for her. However, the nursing staff was advocating for her and helping her get treatment times earlier and earlier. So on her last day, she started treatment at 5:30am and finished around 3:00pm. The sessions were extra long this round because they were giving her extra fluids that are supposed to protect her bladder and prevent her bladder from bleeding. So thankfully, María was able to sleep through most of her treatments. 

    As I said in the last post, María had a draining tube that went into her stomach. Over the week we were in Oslo, María drained LOTS of fluid. Her body kept producing so much fluid to the point the doctors and nurses started to get a little worried. So they decided to take the draining tube out on the day of discharge to see if her body would stabilize itself. At the beginning when they first put the draining tube in, a lot of the fluid was very dark red and very bloody. But over the week, thankfully the fluid lightened and there was less and less blood that was being drained. This was a great sign for the doctors (and us to be honest… haha) 

    María’s energy level was at an all time low (probably below zero) before getting to Oslo last week. However, now that we have her pain and nausea under control and have a better system with her medication, her energy level fluctuates between a 5-8 from day-to-day. Lately she is seeming more like herself which is a huge accomplishment for her. When the staff in Oslo heard that María was puking everyday and in so much pain, they stressed to us that she was supposed to have NO PAIN...  So they were working hard to find a better system for us to have a more enjoyable time at home. Because let me tell you…. both María and I had lots of anxiety about her coming home after round 2… 

    This time around at the hospital, both María and I had lots of meetings with the staff as they came in and out of our room. We had stressed to them that our last experience was absolutely ridiculous. We felt like no one went through the medications with us, they didn’t give us a schedule to follow, they didn’t give her any advice with how her body would feel once she started to lose her hair, NOTHING. We feel that since María tested positive with Covid at the end of round 1, they stuck us in an isolation room, avoided us (felt like it at least) and then kicked us out the back door and said “good luck” when it was time for us to go home. So this time we asked for paperwork with times and what medications she has to take everyday regardless of how she feels and what medications she can take as needed. They also talked to the hospital here in Lillehammer and talked to them about giving María open access to the hospital if she’s feeling sick and needs to be admitted (because it was a nightmare trying to get her to the hospital before. They refused to take her in when she was at her worst) So overall we left Oslo better prepared and with written documentation to protect ourselves and prevent any future struggles. 

    Over the time in Oslo, we also had a few guests at the hospital! María’s parents, her siblings, and a couple of her friends stopped by to say hi. Overall, I think it was very helpful for them to “see the process” of what it’s like and to meet the wonderful staff. Maria and I know the staff very well and we feel very comfortable there so we are happy her parents were able to meet them and feel better about her being Oslo. 

    On the day of discharge, the doctor told us that after round 3 of Liquid Sunshine, we’ll do a new round of scans and imaging to see where Maria is at and how her body is doing. If things are looking good, then they will give us the green light to travel to Spain and Switzerland. We would NEVER travel out of the country if María is not fit to travel. However, with the most recent news, it’s important for us that María is living her life to the fullest and fulfilling her wishes. So we will safely do everything we can to make that happen. Until then, we are going to travel around Norway as long as her body is able and willing! 

    The doctor told us some bad news on the last day (I know… when will it end) that we wanted to share with you. She said they may be able to stabilize her cancer and stop it from spreading for awhile but eventually (they don’t know when) it will spread again and grow and get worse. She said it’s just a matter of time. But I want to share with everyone that our God is more powerful than medicine, he has performed many miracles that even doctors can’t explain. I mean, after María’s last knee surgery, they said she wouldn’t be able to run again in her life and she’s ran a 1/2 marathon and did a mountain race in California! Doctors aren’t always right and we are praying for a miracle and we are praying that the cancer disappears and or stabilizes itself. We just ask that you all continue to pray, meditate and send good vibes our way. Medicine isn’t the final answer but God will make the ultimate decision and we are holding onto that hope! 

    On the positive side, the doctor said that if her body stops producing so much fluid, it may mean that the treatment is having a positive effect on the body. We are happy to say that in the beginning she was not retaining lots of fluid in her stomach. It looked like the body had stabilized itself for a bit of time. For us this is amazing and great news! Something could be working! Unfortunately though, her spleen started to produce more fluid again. But it looks like her body is fluctuating in weight rather than just getting bigger and staying bigger. So we are hoping that this is a good sign. It’s the little victories that we are holding onto and we are hopeful that the treatment is working! 

    On Saturday March 19th, we had the biggest and scariest thing happen to us. Maria woke up in the morning and said she felt like her stomach was ripping apart all night… (she ignored it and didn’t wake me up to tell me this) and when I looked at her in the morning, her stomach was MUCH bigger. She also said she felt like she was fainting… so she laid down in bed for a bit to rest. A few minutes later, out of nowhere she ran to the bathroom and puked up LOTS of blood! Chucks of blood and loose fresh blood...  I absolutely panicked. I’ve never felt more lost in my entire life. I’ve taken so many CPR, life support, emergency aid classes but I had no idea how to help her. I was so traumatized with what was happening everything escaped my head. She then fainted, fell on me and hit the ground and started moaning and screaming and her body turned white and she was shaking. Her body dropped HARD and I was worried she hurt herself and then the dogs were also freaking out. Thankfully her sister was over at our place because she had spent the night and she was able to help with everything going on… She was able to turn on full "life saving" mode and help me and María. It was the scariest moment since everything for the both of us. During all of this, I couldn't remember any emergency numbers (because it's different from the US) or any of the hospital numbers. Feeling so lost and scared was the worst feeling in the world but thankfully Marías sister was there. Iris was able to call the ambulance and they picked her up and took her to the hospital in Lillehammer. 

    

    We found out that her red & white blood cell count was very, very low. So that's why she fainted multiple times in the morning. The doctors ended up giving her blood which helped her feel much better. However, unfortunately they weren't able to do an gastroscope or any imaging if needed at the hospital near our house. So they had to drive her to another hospital 1 hour away in Hamar. There they did a gastroscope but found no ulcers or even any trace of blood in her stomach. They have no idea where the blood came from. So unfortunately we don't have any solution for that event... But we are praying it doesn't happen again. 

    Maria was in Hamar from Saturday until today (Monday, March 21st). While she was in Hamar, they had her in isolation to protecter her immune system due to low blood levels and a recent fever. So we weren't able to visit her over the weekend. But thankfully we were able to see her on Saturday and drop off some things for her. She was transferred back to Lillehammer hospital today and is now in a private room. At this time, both María and I are very scared for her to come home. As much as we want her to come home, both of us are worried about something bad happening again. So for now, she will stay at the hospital. 

    Thank you all for reaching out and caring about the both of us so much! We love you all and wouldn’t be able to do any of this without your support, prayers, and kind messages! 

Until next time, 

Ryan

Ps. Here are some pictures of the last few days. 

Maria had an AMAZING day on Friday! We went to the mountain and she was jogging, walking, playing with the dogs etc. She was pretty much her normal self! 

Maria's brother came to visit a couple times in Oslo! 

Freydis came to visit in Oslo! 

Hailey stopped by the hospital when María was sleeping and dropped off AMAZING treats for her!! 

María was supposed to run her second 1/2 marathon (21.5K) this last weekend! So instead of sitting around the hospital, we decided to go on a 2.15K walk. María being the beast she is, walked more than 2.15K. 

Íris came to Oslo to spend time with María and I. We were able to go out and get María a hot chocolate. 

María's cousin Margrét came to spend the day with us. María couldn't stop talking about how amazing it was to have her closer and to spend the day with her!  

María rocking her new outfit that is from her family. 

María after our horrible morning at home... She is such a trooper for putting a smile on her face!