It’s been an eventful two weeks over here at the Rutchiks. Joseph had his port placed last Thursday, began his first round of chemo last Friday and James turned six that Saturday. We were able to have both our families over for a portion of the weekend and while Joseph was feeling unwell and not able to fully participate, having family around was a welcome distraction for the kiddos and helped to lift our spirits and keep the birthday festive for James.
Joseph continued to feel unwell and the swelling and distention in his belly progressed. His kidney function continued to go down. On Monday we popped into the cancer center here in Appleton for some tests and IV fluids. We returned on Tuesday and the team in Appleton thought it best to admit Joseph to the hospital. While we agreed, Joseph’s appointment with the oncology specialist in Milwaukee was scheduled for Wednesday and we didn’t want to miss that consultation. The team in Appleton gave Joseph some medicine to make him more comfortable so we could get him through the night and to MKE the next day.
On Wednesday we met with the specialist in MKE and he agreed with the diagnosis and treatment plan given here in Appleton. He did have a few ideas on some things we could try, including an additional chemo drug newly used in urachal cancer. The chemo, dehydration and hit on the kidneys continued to progress so the team in MKE admitted Joseph to the hospital down at Froedtert.
On Thursday we were able to meet with several different teams and Joseph did a lot of resting. We had a much needed and encouraging visit with the APNP that manages all of Joseph, Laney & LuLu’s Loeys-Dietz Syndrome care. Having a trusted medical provider who knows your entire history and you/your family is of such great value and we were so appreciative of the visit. I worked throughout the remainder of the day and since Joseph was sleeping, I took advantage of every service the hospital had to offer. I met with an OT who helped me make a shopping list to safely outfit our bathroom at home for Joseph and I met with a Family/Child Life expert on the best approaches for speaking to the kids about what’s happening.
On Thursday afternoon Joseph was having a difficult time maintaining his blood pressure. After a few hours of his BP dropping his team decided it was best to transfer him to the ICU where he could get some critical and more focused support. Although the half hour leading up to his transfer was a scary and stressful one, we both agreed we felt good about the decision. There is just more dedicated support and staffing in the ICU. That is where Joseph needed to be this weekend. Even with a BP of 58/36, the doctors and I were astonished when Joseph would pass out when not being spoken too, but would be able to answer questions correctly when directly addressed. Even when his body is using all its energy battling sickness Joseph can still ace a test. I may be biased, but he continuously impresses me with his strength, intellect and humor. The doctor trying to keep him awake by asking him questions discovered they went to the same college at the same time. She asked him why she never saw him in the bars. He awoke and opened his eyes long enough to answer, “How do you know you didn’t? I’m sure you did!” 😊
It is always difficult when Joseph is in the hospital out of town. Unfortunatly, we are no stranger to health emergencies and hospital stays. Even with all of the “training” our family has had in this area, nothing can truly prepare a family for this. It is more challenging than I imagined it could be. We are “homebodies” and none of us do well when we aren’t all together. The kids are scared and confused and I am struggling with wanting to be in two places at once, keep up with work, and remembering to take care of all our other life needs - like paying the water bill and the fact that the dishwasher is broken.
Our kids are each grappling with the situation in their own way. I received a few crying phone calls from home. Those phone calls make the hour and a half of highway between home and the hospital feel like another universe.
Once Joseph was stable, we decided it was best for me to come home to Appleton for the weekend to love on the kids, reassure them and help give them a sense of normalcy. With the help of the Child Life team, Joseph was able to pick out and send home a teddy bear filled with love, hugs and prayers from daddy to each one of the kids. They’ve been snuggling the bears all weekend and the younger ones have even been talking to their bear as if it were daddy.
Our family prayer time each evening has been both the most comforting and most difficult hour of our days. We pray, laugh and sometimes just rock and cry. But still, lighting the candles and saying the prayers we have said our entire lives is comforting and uniting. Routine and traditions are our roadmap right now.
Joseph’s mom was able to come up Sat. morning to visit and sit in with the ICU team as they made a plan of care and action and my mom was able to head to our house in Appleton to take care of the kids. A friend who was recently ordained as a deacon visited Joseph in the hospital and prayed with us. A friend drove from Green Bay to Milwaukee to deliver my pills and friends from church took kids for playdates, mowed the lawn and checked in throughout the weekend. Joseph’s sister has filled our fridge a few times now and my brother has supervised nighttime meds and played games to distract upset kids. Our extended family members have sent cards and gift cards of encouragement and prayers. Our friends, family and community are the only things keeping me going. Knowing the kids and I are being loved is allowing Joseph to focus on his fight.
Today is Sunday. Although most of us weren’t showered and none of us felt up for it, we packed up the van and headed to church. Shared troubles truly are halved and although this is the most difficult season our family has faced, we have been given a rare opportunity to see our support system and community at their very best. That is a blessing we are privileged to witness and do not take for granted.
We will keep everyone posted on next steps for Joseph. Right now, we are paused on the chemo. He is working on recovering from this hiccup. It is our prayer that the start of the week will bring clarity on the plan moving forward and that Joseph can begin chemo (safely) again soon.