Thank you for your calls, emails and texts and we’re sorry that we’re not able to respond promptly to everyone. Our hope was this blog would answer many of your questions and provide a glimpse into Eli’s journey; we hope that’s proving true;-)
Eli’s had a pretty great week overall! He’s back to walking with all but a little limp. He’s laughing and giggling and smiling and playing and enjoying all the things he used to and taaallllkkkking a lot, which is exactly what we were praying for so THANK YOU!
Eli’s still attending physical therapy two times per week at this point. He enjoys some parts (the play therapy) and not so much the other parts (the work). The steroids have been out of his system for two weeks so his strength has DRASTICALLY improved so thinking we’ll be discharged soon;-)
Fun part…
The not so fun part… hence the face;-)
The pediatric hematology/oncology group hosted a Halloween party for the kids on Sunday evening. We invited some new friends over for dinner beforehand whose five year old daughter, Peyton, also has ALL. Eli dressed as a knight and was amazed by the 16 foot candy table! Jody and I may have struggled with some self-control at this table.
Monday morning Eli began a four week Consolidation Phase. This is looking like a lighter phase, which we are extremely grateful for since Eli’s last phase was so aggressive. His little body will get somewhat of a break in the grand scheme of his treatment protocol. He received his first of three spinal taps yesterday, another flu shot as well as chemo via his port and a new chemo which he takes orally at bedtime for the next 28 days. I’m asking for HUGE prayers for me in this area as I’m having a very difficult time with all the drugs being poured into Eli and the side effects he suffers from them. I feel backed into a corner as this is our only option for treating him and it’s just hard and goes against so much of what I believe in. I was blessed to have a few hours with an amazing woman today who poured into me after losing her fourteen year old daughter to cancer 9 months ago. She knows what I’m feeling, thinking, experiencing. She challenged me to keep an eternal perspective in this marathon. Here I am trying to sprint each day and wondering why I’m struggling to keep up.
The nurses at clinic always try and make it fun for the kids so were holding a coloring contest;-)
He received a Transformer friend at clinic, which kept him company throughout the day.
Clinic days are hard because he knows to expect pain during his time there.
Had to include this one for two reasons: his awesome smile and many people have asked about his mediport. It’s above his heart (under the white gauze), under his skin, and it’s essentially tapped into his central artery. They access it when he needs liquid chemo, blood/platelet transfusions, fluids, etc. When he’s done with treatment, they de-access him (remove the needle).
His mouth sores are all but gone for the moment, his hair is continuing to fall out and is sparse, and he’s having episodes where he shakes, especially his hands. His oncologists say it’s due to his toxicity levels and will decrease depending on his dosages of certain chemotherapies. Asking for prayer over this area specifically right now.
Eli asked for a date with me tonight;-) It was such a sweet request and made me feel like we had some part of our ‘normal’ back. He had it all planned out… a trip to the train park, a slurpee at 7-11 (he received a coupon for one at the Halloween party Sunday night:-) and a pile of books to be read while snuggling together on the couch. It was a fantastic way to end the day!
Climbing like a champ!
Thank you, Dwight & Jan, for loving our family so much & so well… “He gives power to the weak and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.” Isaiah 40: 29-31.
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