Xbox day
Today so far has been the most calm day of our 3 weeks...what was the change? Wil's friend Nick came over with his "extra" xbox one. And one of his soccer dads brought over a headset. Wil has been online for about 8 hours today! Everyone who knows me, knows I hate video games, but it has been a great distraction for Wil. It helped his mental state today for sure! He only had 2 rough patches this afternoon, but rested so he could get back to his "online" friends. We are back at the clinic in the morning and hopefully will make soccer game in the afternoon.
Facebook Wednesday, June7
Life is full of ups and downs. Those closest to me know we take things hour by hour here. Sometimes I try to break it up into morning, afternoon, evening and over night but even that sometimes does not get the extend of the roller coaster we are on. Wil is getting better at tolerating the constant pain he is in, but there are times when even he can not bear it and it shakes everyone to the core. He is fighting hard and staying strong. None of us want to be doing this, but I am so proud of him and his sisters Kristen Ohler & Kate Ohler for staying strong. He had one blood transfusion today that still didn't up his numbers up, but most of the clinic is at camp rainbow http://www.camprainbow.com (more info later) this week so we will be back Friday. His port is very sore and swollen. He had a few horrible bouts of cramping, nausea, and bleeding today. His fingers are numb on his right side. The chemo yesterday has given him a rash all over his torso. The steroids not only have given him fun mood swings and horrible acne but he now has the swollen round face too, good thing he hasn't lost his facial hair yet! And speaking of hair it is thinning but hanging on tight! We were told by week 3 he would need to shave but not yet! He keeps saying he will be the 1% that doesn't lose his hair, but if he does he wants take a photo shoot (I do love me some teenagers!).
Lots of love today from #wilswarriors Angela Kindle Kim Roby Husman Jackie Zagar Theodore Amy Raab Kaiser Phyllis Castleberry Ackfeld and as always Brandi Lea who is here daily on the front line even when I know it breaks her heart too 😘
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