Welcome to Henry's CaringBridge site. I've created it to keep friends and family updated about Henry's treatment for acute lymphoblastic leukemia. We appreciate your support and words of hope and encouragement during this time when it matters most.
It has been a busy week! Ryan had Henry in the clinic all day on Monday to get his IVIG infusion. It was a long day for everyone but Ryan said the boys weathered it like champs. Will tagged along since he was on Spring Break and that likely made the time pass easier for Henry. I can only imagine that it was a full-on video game marathon. One exciting thing is that Henry’s daily meds are slowly being changed from IV meds that go into his central line to oral meds that go into his feeding tube. His twice daily steroid infusion was changed to an oral med this week leaving only one med, once per day, that needs to go into his central line. This is really significant because the doctors are working to get to the point that Henry’s Hickman Port can finally be removed. It is an external port that requires a stressful dressing change once per week and needs to be carefully taped to prevent any water touching it for every bath and shower.
The goal established is to be ready to surgically remove the port before summertime so that he can go swimming and participate in the fun. We are especially excited because we recently learned that Make-a-Wish South Dakota has granted Henry’s wish to go to Disneyworld!! We leave for a week at Mickey’s place on June 22nd. Both boys are extremely excited and Ryan and I are very excited for them. It will be a wonderful way to celebrate all the obstacles that Henry has overcome this year. We are so grateful to Make-a-Wish for being patient with us for the many months when we couldn’t commit to anything, much less a trip to Florida. The organization has truly been a dream to work with and are so sensitive to the needs of a family with a critically ill child.
Now, for the not-so-nice news, our beloved Grandpa George had a stroke this week. He is doing really well and is even home from the hospital but he gave us all a scare. He has been our (especially my) rock throughout this ordeal. Those of you close to the situation know he is my number one supporter, cheerleader and confidante – he has literally been there every agonizing step of the way and I wouldn’t have made it through without his unconditional and unwavering support. So, please say a prayer for Grandpa George's speedy recovery.