Ryan’s Story

Site created on July 27, 2019

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Newest Update

Journal entry by Marissa Olliges

The doctors were not kidding when they said this round would be the most intense. The past two months have been a roller coaster with lots of ups and downs. On top of all of the doctors appointments/treatment, my travel schedule for work has been heavy so there has not been time to keep up with the website. I am sorry for the delay, but this will be a quick summary of this round which ended yesterday (2/25)! Ryan received a different chemo every two weeks that came with different side effects. 

Weeks 1-2
The first two weeks he received a chemo every other day, a lumbar puncture, and was on a steroid. The big side effect from the steroid was uncontrollable hiccups. He would literally start getting hiccups out of nowhere and nothing would stop them. It became so uncomfortable that his chest and throat were sore. He had to start taking a medication to help prevent them from starting. He also experienced GI issues and had a very unsettled stomach. 

Weeks 3-4
The next two weeks consisted of a lumbar puncture, two new IV chemos and one new chemo pill. Ryan was feeling fatigued and had an unsettled stomach but was able to maintain his blood counts. He was feeling "ok" during these few weeks but battled an ongoing running nose which never seemed to go away. We were very thankful for Ryan's status, but one morning Mason started limping out of nowhere then ended up only crawling. It was clear something was bothering him because he would curl his toes when we tried to stand him up. After multiple doctors appointments, they ordered an ultra sound on his hip to check for fluid. He did not walk for 4 days. While I was at the hospital waiting for his ultrasound, he was fussing to get out of my arms and took off running for the gift shop which had multiple stuffed animals in the window! It was really unbelievable-the two weeks we should have had less appointments, Mason made up for them! We are thankful it ended up being nothing serious though! 

Weeks 5-6
These weeks he received a lumbar puncture, a new chemo which was given 4 days in a row week 5 and 4 days in a row week 6. He also was on a new chemo pill every day. This chemo caused a lot of nausea and fatigue. He really started to feel terrible towards the end of week 6. He felt nauseous, had on/off headaches, and had extreme fatigue. On Friday February 7th, I drove home from a work trip in Michigan. I did not get home until almost midnight and Ryan was on the couch. I was surprised to see he waited up for me and even more surprised to hear he had just woken up with a fever. His counts were very low from all the chemo so his doctor requested we go to a local ER and confirm his blood work to see if he would need to be admitted. We went to an ER in Arlington Heights and they said it would be hours before we could see a doctor so we decided to just drive to University of Chicago so we could be with his doctor team in case he needed to be admitted. Our team was able to assign a room to him but the ER was full, and no beds were available when we got there so we had to wait for around two hours which felt like days! We finally were admitted around 2:30 a.m. and did not get any initial feedback until 6 a.m. Ryan was running a fever, felt nauseous, and had a pulsing headache. They finally admitted him around 7:00 pm on Saturday night. He was in the hospital until the following Thursday. His treatment was delayed and we were feeling very overwhelmed with unanswered questions. It took the doctors almost a week to determine his fever source was a bacterial sinus infection. They were able to give him oral targeting antibiotics to treat that which eliminated the headaches and fever. He also had to receive transfusions almost every day in the hospital because the infection pushed his counts too low. There was one other issue-anytime he sat up, stood, or walked-his heart rate was severely elevated. At discharge, they indicated it was likely due to the heavy treatment disrupting his nerves and flow. They expected it would improve and reset itself. 

Weeks 7-8
Ryan was discharged on Thursday 2/13 and they started his chemo again on Friday 2/14. This chemo was a repeat of weeks 1-2 and he experienced the same symptoms. His white blood cells and infection fighting cells dropped to basically zero, so he was given a marrow boosting shot. This shot caused severe shooting pains in his back but was very effective in raising his counts. He experienced back pain for about 4 days straight. Since he has been out of the hospital, his heart issue has gotten worse. After he goes up/down stairs his heart races, he gets lightheaded, and shortness of breath. The initial tests they have done have come back normal. He will have a CT of his heart and Echo cardiogram done at the end of this week then we will meet with a cardiologist team at the end of next week. We are praying nothing serious comes back and his body will naturally bounce back as the treatment works through his system. 

We have also had to meet with an infectious disease doctor this week about a few viruses that have shown detectable since his immune system has been down. One of the viruses is CMV which put him in the hospital for two months in Houston last year. The doctors are closely monitoring and have plans in place in case the viruses spike. 

In addition to the cardiologist appointments/tests next week, Ryan will have a bone marrow biopsy to confirm remission. They are also moving forward with starting him on maintenance treatment. This will consist of a lumbar puncture, chemo pill, and chemo IV at a lower dose. 

We have been waiting for his last day of treatment in this last intense round for a long time, but never expected to be experiencing all the other issues that are going on. Ryan has kept a positive attitude and works to get through each day to the best of his ability despite every new battle he continues to face. He has been taking it easy and trying to avoid raising his heart rate until we have more answers about the source. We really appreciate everyone that has reached out, all the prayers, and support. We could not have reached this point without it!
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