It has been a long couple of days at the hospital, in fact, it’s hard to believe it has only been two days. So here’s how things have gone down so far.
We got to the hospital at 10 am Friday morning for Reece’s line placement. We checked into the same location as where he had his biopsy, but he was wheeled to a different room for the actual procedure. He enjoyed being wheeled in his bed, but when we arrived at IR (Interventional Radiology) and he was getting prepped for the surgery, he began to realize this was different from before. He actually said, “I don’t like this; I want to go home.” I felt horrible. Child-Life had many toys there to distract him while we waited to be wheeled into surgery and one of them was a light-up wand. He began to point the wand at us and “freeze” us with it. It became a game that he played even until we were wheeled into surgery. Of course we were all gowned and masked, including the many doctors and nurses…and of course Toto and Josh the Dog. It was quite comical as we were wheeled in to see everyone playing along with Reece’s game–dodging behind machines and pretending to be frozen when he waved the wand at people. Terry and I waited with him until he was sedated and then we left the room.
Reece handled the line placement procedure well and spent quite a bit of time in recovery sleeping. He eventually woke up, ate lunch (again, complete with a cherry slushy), and they wheeled him up to the BMT unit. It was a whirlwind of people who began to come into Reece’s room–doctors, nurses, the chaplain, child-life, the social worker–it was overwhelming. Thank goodness my parents were there to keep Reece occupied during the whole intake process.
Before dinner, Reece was able to go into the shared playroom and play with toys and the volunteer. He loved it and was disheartened when he learned he could not go in there after yesterday. Once chemotherapy starts, the kids are basically confined to their rooms. Our only major snafu of the day happened with dinner. We ordered it at 5 pm and it didn’t arrive until after 7:30…unacceptable. The nurses were so annoyed and we were beyond frustrated. It took two calls to managers to get his tray brought to him. Let’s hope that isn’t a pattern, although it sounds like it is somewhat typical.
Prior to the start of chemo, I had this moment of mild panic where I needed to talk to the doctor just to make sure that they were certain he has the right diagnosis. I was reassured that with monosomy 7, it is classic for what he is battling. Terry stayed overnight with Reece and I went home with my parents to get some rest. The chemotherapy, I am told, went well and Reece slept well other than groggily complaining of some nausea throughout the night.
Saturday morning I spent a short time with Britta and my parents and then went back to the hospital. I brought Reece’s matchbox cars and ramp, knowing that he would probably be looking for more toys to play with. I arrived at the hospital and Reece was eating breakfast. Terry had already stood at the doorway for the doctors rounds and received the report that Reece did well overnight.
Mid-morning, Reece took a bath and then experienced his first dressing change on his line. There was lots of very sticky tape they had to remove from the covering placed on for the bath, plus the sticky bandage they use to cover the line, plus the pad that covers the actual insertion site. He handled all the tape removal very well and we read books for a distraction. I wish I had been better prepared for the next part–they cleaned the actual site and it was not a pretty scene. We were all masked so that we wouldn’t breath into the site and Reece had to be very careful to not touch the nursing assistant or the site itself during the process. The NA started swabbing down the site and Reece was grabbing both of my hands–big tears. Again, another moment of agony as a parent. He was quick to recover, but we will have to do this every three days in the hospital and Terry or I will need to do it once a week when we leave the hospital. I definitely need a strategy for this one. We let him play his “Cars” game on the iPad as a special treat and he moved on very well.
After the dressing change, we cleaned his floor play mat and he began playing much like he does at home. However, five minutes later, he got up to walk around to another part of the mat, forgot he was hooked up to the machine (which is attached to him through his line that was probably still tender from the dressing change) and he pulled hard on the line. Again, there were big tears and hugs. We’ll have to get used to being hooked up to the machine and careful about the line.
The fellow (basically a medical student who has gone through regular residency, but is receiving additional training to become a BMT doc) came in to talk to us. She advised us that Reece could still be out and about in the hospital with his mask on. He, my mom, and I (and his machine, of course) walked down to the front desk to sign him up for more playtime in the playroom–Reece was very excited! Not a minute passed after we returned to the room that the nurse advised the fellow was mistaken and we could not leave the room. Reece broke the rules within the first 24 hours of being here! He was, however, extremely disappointed. And while I understand that everyone makes mistakes, this seems like a major oversight. I really like the fellow, but I am not sure what happened on that one. The main doc came in to apologize, but didn’t go into great detail about what had happened. We’ll see if I can get some answers today.
Terry and I were relieved by my parents; they stayed and played with Reece during the afternoon while Terry and I worked out, showered, took Britta out to dinner, and ran a few errands. We then took Britta up to visit Reece. It was a short reunion, but I am glad they were able to see each other. My parents left with Britta and Terry and I got Reece ready for bed. Terry left around 9 pm and Reece nodded off shortly thereafter. The nurse came in around 10 to get Reece’s chemo started. I was still awake, but it was hard to look at the chemo bag and not want to grab Reece and get him out of there. The natural parenting instinct to protect your child is overwhelming. Still, I know it is there to save his life, so while it is poison, it is good. Very strange.
I chatted for a while with the nurse after she finished the procedure. We started talking about the chemo and she shared with me some of the other devastating diseases and situations she has witnessed here (nothing graphic or specific to any one person). She was sensitive to the fact that I am a parent going through something stressful, but was explaining how there was a set of identical twins receiving a transplant at the same time and how differently they responded to the transplant. It was a disease inherited by the mother. I can not fathom what that mom must have felt like and my heart hurts for her. Throughout our conversation, I felt actually grateful that Reece’s diagnosis is treatable and that while the chemo and radiation will have side effects, they do not have the effect of speeding up the progression of the disease as some diagnoses do.
Today includes another round of chemo late tonight. My parents will go back to their house with Britta and we will try to settle into our weekly pattern. Monday, Reece will begin radiation and we are told that is when his energy will fall and the nausea will likely pick up. For now, he is still playing and generally acting like himself.
We are so appreciative of all of your prayers. Please continue to lift up Reece–that he comes through this quickly and he is HEALED, that he has no side effects (we’re asking for BIG things), and that he can handle being in the room day after day. Please pray for our family’s health–physical, mental, emotional, and spiritual. Pray that we have the power to withstand this entire process and support Reece in the best possible way. Thank-you.