Zayden’s Story

Site created on December 10, 2023

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Joshua Jones

Yesterday was chemo day. Zayden has been feeling great, doing so well in physical therapy and started speech therapy and occupational therapy to help keep him on track. His eye has been looking so good! He only has to patch for 2 hours a day and we don’t have to see the eye doctor until mid June (unless we or the doctors have any concerns) 
We actually got into the office fast, got labs back pretty fast, and got down for his procedure and they took him right away, we were able to still order breakfast! The kitchen is usually always closed by the time we are able to get away while Zayden is in his procedures (lumbar puncture with chemo administered right into his spine) then got back upstairs to finish his other two chemos. We did a full dose of the vincristine chemo this time, so we are keeping an eye on his eyes. Then he got a new chemo, doxorubicin, they call this the “red devil chemo” it is red and has turned his urine a little red.  
Unfortunately this chemo came with the education that it’s going to lower Zaydens blood counts (hemoglobin and platelets) and his risk for infection will be very high. He also may have nausea/vomiting, get mouth sores, and become constipated. He also started steroids again. Last time he was on steroids he got so weak he couldn’t walk on his own, and he was so irritable he screamed a lot and it was very hard on us. He’s only on day two of steroids and he screamed part of the day and tore apart his room today…it is so difficult for us to watch him deal with these big feelings and be so helpless as Zayden doesn’t even know what he wants/needs and we know this isn’t our sweet, loving little boy.  We would do anything for him while he’s going through this but he has difficulty expressing to us what those needs/wants are and this is going to be a rough month. We have been advised to “quarantine” until end of June/beginning of July. We will be having minimal contact with people starting now. Doctors advised us to pack overnight bags and keep in the car with each visit as it is inevitable we may need to be admitted. Please keep us in your thoughts and pray this goes by fast for Zay 
Thanks to our village for supporting us and understanding our need to keep Zayden as safe as possible at this time. 
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