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Sep 9, 2018 Latest post:
Jan 10, 2020
Our beautiful and loving son Ukiah was diagnosed with Childhood Acute Lymphoblastic Leukemia on September 7th, 2018 at OHSU Doernbecher's Hospital. This came to us as a complete shock as I am sure it has come to you.
What does this mean to Ukiah? It means his blood was making cells that were not doing their job and causing other cells, the ones that fight infections, to not be as strong or effective at their job of keeping him healthy. This made him feel tired a lot, have pain in his bones, have fevers and bruise easily. The good news is this type of leukemia comes with the highest success rate for recovery. The bad news is it also comes with a lengthy and intense three-year treatment plan.
Ukiah has begun this treatment plan at Doernbecher's Hospital and is expected to be discharge on/around September 10th, but will continue to return to Doernbecher's for bi-weekly chemotherapy for the next 29 days. This chemotherapy treatment can have many different side effects but the most common seen in children are irritability, intense hunger, weight gain, hair loss, mouth sores and constipation. So, we meet Ukiah with loving kindness and compassion knowing that he's dealing with very new and intense physical sensations. During this month, he'll continue to receive his 2nd grade education through the coordination with his teachers at the hospital and his teacher at Juniper Elementary. He'll also have a stuffed monkey that will sit in his seat at school and be cared for by his peers during his absence from school. He'll endure invasive bone marrow draws and spinal tap procedures to check his blood cell counts. These invasive procedures are painful and require additional recovery time and sensitivity, so visitors will be limited on these days.
After the 29 days, his blood cell counts will be measured and determined if he's ready to return to Bend where he will continue to receive chemotherapy weekly at Doernbecher's. Once back in Bend, he can return to school and begun participating in non-impact sports and recreations. He will be able to have visitors and normal social interactions, but regular hand washing and precaution to avoid those with a fever or other illness symptoms will be critical for his continued health. After several months, he'll return to Doernbecher's for another intense month of chemotherapy but over the course of the next three years, the treatment will lessen as long as his body is responding well.
Ukiah is still just a normal kid, wanting to have fun, sing songs with his sister, beat his mom at Battleship, and poke fun with his dad. He welcomes you to come visit during this next month and play with him, laugh with him and remind him that he is loved. Ukiah is an avid Lego builder and reader of chapter books, loves to play all kinds of games and listening to audio books. Over the course of this next month, he will have lots of down time but without the energy to do as much physical activity. Meaningful cards, books and games would be a welcome to him. We will by at the Ronald McDonald House, 2115 SW River Pkwy, Portland, OR 97201; (971)230-0808 (tel:(971)230-0808) from September 12th-October 9th if all goes as hoped by his doctors.
If we are unable to respond to your text, email or call, know that we so appreciate your well wishes and support, and will respond when time allows for us to do so. We look forward to seeing you all as soon as possible and are so grateful for all your support.