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Author: Jason Lewis

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Logan is miserable:( He is holding steady at a 104 degree temperature. Last night he was so weak he got sick all over himself in bed. He also was throwing up so hard that he threw-up his NG tube. We chose not to put it back in until later in the week. His IV’s will keep him hydrated. We continue to put ice cold wash towels on his head to try to cool him. His sodium level was also lower than it should be so he is also getting an extra boost of sodium through IV.

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104 degrees plus…..Logan has been running a very high fever. They were anticipating a fever just not this high. He is being watched closely. We also have a bucket of ice and are continuously switching out cold wash towels for his forehead. It is so scary to see Logan in this state. Just 2 days ago he was playing non-stop w/ Chloe. He has been sleeping most the time. He did get out for a short bike ride earlier this morning….he is awesome.
It has been great sharing the room w/ the Townes. Sharing stories about our amazing boys and watching these two superheros battle cancer. There is a lot of emotion in this room…laughing, fear, tears, very proud parents…… We are also blessed to have the amazing nurses as well. Thank you Amber & Shauna….you have positively affected our lives forever.

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DR. LOGAN J LEWIS
Here we are…….embarked on another journey of experimental medicine. Logan is almost 4 hours into the 5 hour treatment. This will be treatment number 5 of 20 of the antibody. This treatment they also give him a higher dose of the medicine he was on last week. That combined w/ antibody we will probably see nausea as well as the pain. Currently he is sleeping peacefully as I type this. We do have a roommate this round….the good news is it is the Townes. Ben started his experimental treatment today. He is an amazing little trooper. If anyone has any connections to get him Lighting McQueen’s autograph he is a huge fan. Please continue to keep both Logan & Ben in your thoughts and prayers this week…….these kids are amazing!

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4 days since we posted, so you know we are doing o.k. The 24 hour IV was disconnected from Logan at 2:10 on Friday and he was extremely excited. It was a long week being connected 24 hours a day, driving to Seattle every day, waiting at Children’s for the pump alarm to go off to indicate the transfusion was completed….. just a long week for Logan to endure. But he did it and that can be checked off the list. Yeah Logan! No side effects at all. He played with Chloe every day with full energy. On Friday night after some time on the Wii, Logan and Chloe set up a garage sale in the living room until 10:30 p.m. He has really been enjoying himself and eating really well still.

Tomorrow, Logan and Dad head to Children’s to get an 8 a.m blood transfusion. This is to make sure his levels are where they should be for treatment on Monday. Then we start with a blood draw on Monday at 7:45 a.m, followed by a clinic visit ( they just check him over, breathing o.k?… check, feeling o.k?….. check, pain?….. check ) then we are off to be admitted on the cancer floor for at least 5 days. They are anticipating a later discharge ( Sat or Sun instead of Fri ) due to the IL-2 drug (24 hour infusion ) that was given to him. We will see the same pain, but this time partnered with more “flu like” symptoms, nausea, diarrhea… etc. Our highlights: being done with the 1st treatment and the 24 hour IV. Being able to share our time with the Towne Family, as they will be admitted at the same time.

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A bit of a long day for Logan (and mom). Kelly got to the hospital on time to do the IV bag switch. It has to be switched at the same time everyday give or take just minutes. The problem occurred when the nurse that was supposed to make the switch showed up late and not prepared w/ what she needed. They ended up switching the medicine 30 minutes late. Kelly left the hospital worried because of the emphasis they put on changing it on time. She received a call later in the day letting her know they will document everything (since experimental) and that the time of the medicine should not be a problem. Although frustrating, I guess we can expect some small hiccups since it has been awhile since the last experimental treatment was given at Seattle Children’s Hospital.

Logan has been feeling great and has not shown any side affects from the medicine. Tonight he was outside playing in the yard w/ Chloe. They were Power Rangers looking for the magic golden tree while being chased by bad guys. Smile everyone and thank you for your continued thoughts and prayers.

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Logan is on the IV and doing great. We were told different things of what to expect. One nurse told us to expect flu like symptoms while another three told us he should be fine. We will go with the odds. We have found that, while frustrating, this is sometimes common. Every kid reacts different. When he got home he was out playing and swinging on his swing set. The IV bag sits in a back back along w/ the food he gets through his NG tube. The good thing is he has been eating so well he only needs to be on the NG tube at night. Everyday this week is a trip to Seattle w/ a day off on Saturday back Sunday for a blood transfusion and then admit on Monday. Logan wanted to tell everyone I love you and to smile.

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Good Sunday to all. Logan is doing awesome….cancer? What cancer? Logan was up yesterday at 7am and went strong all day until 10pm! He usually goes to bed at 8pm but his older brother Josh stayed the night and they played video games until late. Logan surprised Josh w/ a new video game (from his shopping spree)…..they were both back up this morning at 6:30 wanting to play. Tomorrow starts a busy week w/ daily trips to the hospital. He gets hooked up to the IV that he will have to wear 24/7.

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We have had an eventful week. On Tuesday night, Logan went to Toys R Us for a shopping spree. I know… how lucky is he!!! A senior at Bonney Lake High School (where Aunt Traci works) contacted us about including Logan in her senior project. Amy raised just over a $1000.00 and presented Logan with Toys R Us gift cards to go shopping! Amy and her mom joined us for the exciting spending. Logan did great, a little overwhelmed….. but a smile never left his face. He decided that he wanted to spend some of his money on his friends and family, we were proud he wanted to share with others. After the 1 hour there Logan was ready to stop as he was so tired from the excitement. The next day Logan finished his shopping and spent the rest of the money on the Children’s Hospital. Logan stated “he was done shopping and wanted to start shopping for the Children’s Hospital”. Logan’s focus was on buying bikes for the cancer floor. (When we are there you can ride bikes on the floor, Logan loves doing this. The last time he was riding bikes some were broken, the one he was riding the pedal was broke, he was upset about that) So Logan and I sent out to pick out the perfect bikes. We decided that we needed to get a new bike for each age group with helmets of course (we cannot ride bikes at children’s without helmets) He was pretty proud about buying for others, we are so proud that he is a very caring child. Thank you to Amy once again, without your thoughtfulness we would not have been able to do any of this. You are an amazing person.

Exciting for Jason , Logan and I…… Logan is eating. He is eating 3 meals a day with snacks, we have not seen this since he was diagnosed. Just seeing him sit at the table with a plate of food gives me butterflies in my stomach. Mothers feed their children and I am excited to do that again, even if it is short lived. We start an IV at home on Monday that will give him “Flu like symptoms” and then the following week we are admitted again.
Logan is riding his bike, playing baseball in the yard, loving his brother and playing with his new toys. He is doing well. Jason and Logan even saw some “love handles” on him tonight.

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Through this horrible disease we try to take positives from the experience. One of those positives is we met the Towne family…Jeff, Carin, Ryan, and their amazing son Ben. During the last 9 months there has been no one that can relate to what we are going through except them……Yesterday the Towne family received some devastating news….Ben still has cancerous cells in his bone marrow.
Ben will now automatically be entered into the experimental program that Logan was randomized into.
Words can not express our thoughts…..Ben, please know that you are in our thoughts and prayers. You have an amazing Mom & Dad and you will all pull through and beat this.
To everyone that reads this blog……please send all your thoughts and prayers to Ben and his family.