Day Plus 64: Who Does That!?
by Jana
Oliver still has not been able to leave Hotel Primary Children's Hospital since being readmitted for Graft vs. Host Disease ("GVHD") of the GI track three weeks ago. As mentioned, some GVHD is a good thing as it indicates his new immune system is taking hold and also likely having a graft vs. leukemia effect by recognizing leukemia cells as foreign and attacking them, should any develop. That said, you want to see GVHD cause some itchy rashes on your skin, not dead tissue and inflammation throughout your GI track. GI GVHD is not good and has complicated Oliver's already complex medical situation and worsens his prognosis.
We are very relieved, though, that Oliver has responded well to the standard treatment of high dose steroids and several days of gut rest followed by gradual reintroduction of some foods. He has had a few minor setbacks and, unfortunately, tapering off the steroids is not an option right now and will take months. But, he is doing pretty good, all things considered, and we are hopeful he can go home this weekend. So far he has remained in good spirits without the personality changes that usually come with high dose steroids and has been able to be relatively active.
Oliver was able to attend, briefly and via FaceTime, the All For Oliver Party In The Park that our friends and neighbors in our Millcreek community threw for our family two weeks ago. The rest of us were able to stop in and experience it first hand. It was an insane love fest. Seriously. Despite the rain, hundreds of people still showed up. There really were food trucks, music, tables of donated auction items, face painting, henna tattoos, unbelievable baked goods, volunteers wearing All For Oliver shirts, bounce houses, giant bubbles, a Be The Match National Bone Marrow Donor Registry booth, and a powerful, overflowing feeling of love and community that was almost tangible.
Our family hasn't really been the same since. The whole thing was truly overwhelming, in a good way, but still in a way that has made it difficult to talk about even with each other.
This past year, ever since Oliver was diagnosed with AML, Bill and I have found ourselves asking each other on several occasions, "Who does that!?!?" Like when people do things like rake our leaves, mow our lawn, pick up groceries, clean our rain gutters, drop off dinners, bring things up to the hospital, plant a tree, start our garden, feed our bunnies, tell us they have vacation days they would like to use to serve our family in whatever way we need (and then do), tend our girls at a moment's notice and even spend hours removing glue from a cement floor AND then thank US for the opportunity to serve and/or say they wish they could do more.
Or when we found an envelope jammed with cash last fall with a note saying that it was from a bunch of anonymous friends and neighbors who loved us, were praying for us and, again, grateful for the opportunity to help in a "small" way.
Or when the school bus stopped right in front of our house shortly after Oliver relapsed this spring and a bus driver ran up to our porch, hugged me and told me that she heard Oliver was sick again and that she loved my son and missed their conversations about crocheting, then dropped off a handmade gift and ran back to the bus.
Or last June when we found out the entire fifth grade class at Rosecrest had executed "Operation Spread Sunshine" in honor of Oliver and spent the spring actively spreading joy by doing things like mowing neighbors' lawns, putting on bake sales for our family, and even running a free lemonade stand just to make people smile.
Or more recently, when a neighbor stealthily showed up with a metal detector because someone had mentioned that I had lost my wedding ring, likely in the yard, and he wanted to help.
And this last week, when we received a huge check with all of the proceeds from the Party and donations from the many, many people and businesses who donated to the fund set up by the All For Oliver Committee, with this note:
Just because we can no longer be completely surprised by our friends, neighbors, family (and even strangers) does not mean that we cannot still be amazed and lifted up by their genuine love, kindness, and generosity they keep heaping on our family.
Oliver still has not been able to leave Hotel Primary Children's Hospital since being readmitted for Graft vs. Host Disease ("GVHD") of the GI track three weeks ago. As mentioned, some GVHD is a good thing as it indicates his new immune system is taking hold and also likely having a graft vs. leukemia effect by recognizing leukemia cells as foreign and attacking them, should any develop. That said, you want to see GVHD cause some itchy rashes on your skin, not dead tissue and inflammation throughout your GI track. GI GVHD is not good and has complicated Oliver's already complex medical situation and worsens his prognosis.
We are very relieved, though, that Oliver has responded well to the standard treatment of high dose steroids and several days of gut rest followed by gradual reintroduction of some foods. He has had a few minor setbacks and, unfortunately, tapering off the steroids is not an option right now and will take months. But, he is doing pretty good, all things considered, and we are hopeful he can go home this weekend. So far he has remained in good spirits without the personality changes that usually come with high dose steroids and has been able to be relatively active.
Oliver was able to attend, briefly and via FaceTime, the All For Oliver Party In The Park that our friends and neighbors in our Millcreek community threw for our family two weeks ago. The rest of us were able to stop in and experience it first hand. It was an insane love fest. Seriously. Despite the rain, hundreds of people still showed up. There really were food trucks, music, tables of donated auction items, face painting, henna tattoos, unbelievable baked goods, volunteers wearing All For Oliver shirts, bounce houses, giant bubbles, a Be The Match National Bone Marrow Donor Registry booth, and a powerful, overflowing feeling of love and community that was almost tangible.
Our family hasn't really been the same since. The whole thing was truly overwhelming, in a good way, but still in a way that has made it difficult to talk about even with each other.
This past year, ever since Oliver was diagnosed with AML, Bill and I have found ourselves asking each other on several occasions, "Who does that!?!?" Like when people do things like rake our leaves, mow our lawn, pick up groceries, clean our rain gutters, drop off dinners, bring things up to the hospital, plant a tree, start our garden, feed our bunnies, tell us they have vacation days they would like to use to serve our family in whatever way we need (and then do), tend our girls at a moment's notice and even spend hours removing glue from a cement floor AND then thank US for the opportunity to serve and/or say they wish they could do more.
Or when we found an envelope jammed with cash last fall with a note saying that it was from a bunch of anonymous friends and neighbors who loved us, were praying for us and, again, grateful for the opportunity to help in a "small" way.
Or when the school bus stopped right in front of our house shortly after Oliver relapsed this spring and a bus driver ran up to our porch, hugged me and told me that she heard Oliver was sick again and that she loved my son and missed their conversations about crocheting, then dropped off a handmade gift and ran back to the bus.
Or last June when we found out the entire fifth grade class at Rosecrest had executed "Operation Spread Sunshine" in honor of Oliver and spent the spring actively spreading joy by doing things like mowing neighbors' lawns, putting on bake sales for our family, and even running a free lemonade stand just to make people smile.
Or more recently, when a neighbor stealthily showed up with a metal detector because someone had mentioned that I had lost my wedding ring, likely in the yard, and he wanted to help.
And this last week, when we received a huge check with all of the proceeds from the Party and donations from the many, many people and businesses who donated to the fund set up by the All For Oliver Committee, with this note:
Just because we can no longer be completely surprised by our friends, neighbors, family (and even strangers) does not mean that we cannot still be amazed and lifted up by their genuine love, kindness, and generosity they keep heaping on our family.
