This is the fifth installment of the story of Jerry's Bone Marrow Transplant, which details my father-in-law's life saving bone marrow transplant at Johns Hopkins Cancer Center in Baltimore. Read the previous installment - Part Four: Guatemalan Worry Dolls
WEDNESDAY: Arrival in Baltimore
We arrived in Baltimore on Wednesday evening after a long drive from New York with many stops for the kids. Maddy, Gloria and Maggie greeted us downstairs with their Team Jerry hats on and led us through the maze of hallways at the Ritz Carlton Residences up to our apartment. It’s a beautiful place, very comfortable and brand new with gorgeous views of the Harbor. We are so grateful to be able to stay here with a kitchen and plenty of room for the kids. Maddy and Jerry are next door to us and we share an elevator, so when we want to visit if we have keys for both places, we can just walk through the elevator and not have to go into the hall. It’s nice for early morning and late night visits. Gloria’s apartment is in another part of the building, but we are just two minutes away.
After we checked out our apartment, we headed next door to see Jerry and he joked that he could hear the racket we were making! It was so good to see him. Chris had been feeling a bit out of touch this past week after seeing his parents almost every day when they were at home. We had a nice time catching up, the kids entertained us with their antics and Jerry looked great, up and about and chatty. Maddy said it was the most he had talked all week since Gloria had gone home. We were so happy to see his hair growing back! He’s got a half an inch on his head and it looks like a buzz cut, very military and handsome. The type of chemo that he was getting to prepare him for the transplant was far less toxic than the HyperCVAD that he got a few months ago and so he was not experiencing any side effects except for being tired.
We got back to our place around 8 pm, after having a look at Gloria’s apartment, and fed Milo and Quinn dinner. I had brought groceries, and I made them pasta and chicken nuggets. We unpacked a little and Milo could not wait to set up his sleeping bag and get his pajamas on. They were both a little hyper and Quinn was climbing all over the furniture and running around like a mad man. I could barely get him in his pjs. Finally we went over to say good night to Gram and Pop. Jerry has been wearing surgical masks around the kids and we’ve been very careful, not staying for too long and doing fist bumps instead of hugs. The kids danced around and made us laugh and then we returned to our apartment to put them to sleep. They were so revved up it took a while for them to fall asleep and Chris fell asleep too. I stayed up and unpacked the rest of the groceries and put away our things.
THURSDAY: Pre-Operative Appointments, Radiation and Allergies
Thursday was three pre-operative appointments for Chris and radiation for Jerry. Maggie came over to watch the kids at 9 am and Chris and I headed over to Johns Hopkins. We met with Kathy, who was very nice and gave us all our pre-operative instructions. Chris had some blood drawn by a sassy nurse named Antoinette who gave us the sage advice to “Never leave before your blood is labeled!” Next was a physical for Chris to check basic neurological functions and overall health. It was a lot of poking and prodding and many questions. He passed both blood and physical exams and was cleared to go ahead with the donation. Maddy, Jerry and Gloria were due at the hospital later. Jerry’s radiation went well, it was fairly low grade, and did not have any side effects.
Chris and I were done early and so we went out for lunch and had a good talk about the operation the next day. It was nice to have some alone time with him in a relaxing environment and with delicious food. My friend Jill had recommended Miss Shirley’s in downtown Baltimore and it was so good.
We met up with Maggie and the kids on Federal Hill, which is right across from the apartments, and they told us all about their fantastic morning at the Visionary Art Museum, where they saw some incredible art and had lunch. We took them to the park at the top of the hill and pushed them on the swings and enjoyed the beautiful, sunny, spring weather. We spent the rest of the afternoon with the kids at the pool and hanging around the apartment. Quinn fell asleep on the couch and I went grocery shopping with Milo. We got take out at the Wine Cellar and brought it home for a late dinner.
After the kids went to bed, Chris began his pre-operative task of wiping down his body with Clorhexidine antiseptic wipes. There were six wipes to use on different parts of his body and we were to do this twice, once that evening and once in the morning. This is meant to reduce infections by killing any microbes and bacteria that may be on the skin. Almost as soon as we had finished, Chris told me that he felt itchy. I thought maybe it was just the sensation of the chemicals at work, but he continued to get more agitated and panicky and when I suggested that he call the number on the pre-op sheet, he agreed.
He was in immediate contact with a nurse who told us it was unusual to feel itchy and Chris should take a shower to wash the Clorhexidine off. She added that if he began to have trouble breathing that we should go to the ER. Well, this really threw Chris off his game. He was already feeling a little anxious and an allergic reaction did not help. I tried to calm him down and got him to read a book. He was still a little itchy, but he didn’t develop a rash, so we knew it wasn’t a severe reaction. He was eventually able to get some sleep.
FRIDAY: The Big Day, Harvest, Transplant and Recovery
At 5:45 am the next morning I got up to eat and have coffee before Chris got up. He wasn’t allowed to eat and I didn’t want to eat in front of him. I wondered whether or not to wake the kids before we left, but they woke up naturally and we were able to cuddle and remind them that Maggie was coming over, so that when she arrived, they were excited to be with her and didn’t mind us leaving.
We arrived on time at the hospital at 7:30 am and waited together for about an hour until Chris was taken back to get prepped for surgery. I had been expecting to go back and wait with him, but I had to stay in the waiting room. They finally called me to go see him an hour later. The anesthesiologists were there and about to put him to sleep so I saw him for just 5 minutes, all prepped in a bed with the gown on and IVs, before they wheeled him away at 9:30 am with a funny grin on his face. I thought I would cry, seeing him go off like that, but I didn’t, I just knew that everything would be alright.
I waited another hour in the waiting room and at 10:30 am I got the message that they had begun the procedure. Gloria arrived, after seeing Maddy and Jerry off upstairs, and she was there when Dr. Borollo (in the photo below) came out at 11:30 am to tell me that Chris's operation was all over and that it went great. They were able to get exactly what they needed, 700 CCs of bone marrow, and I’d be able to see him soon. Gloria gave the doctor a hat (she's been handing them out to all the staff at the hospital) and we got him to pose for a photo.
Jerry was upstairs getting medication to relax and hydrate him. They had to process the bone marrow in the lab and then it would be ready for him. I waited for another hour, watching old school 1970's game shows and tapping my foot. I could not wait to get back there to see Chris. It had been three hours since I had seen him. Finally, at around 12:30 pm, they let me back into the recovery area.
Chris was groggy and resting and when I asked him how was doing, he said he was fine but wanted to know how his Dad was. What a guy, he's been more concerned about his Dad during this whole process. They didn’t want me to stay back there, it’s an open area with lots of patients, and Chris needed to sleep, so after making sure he was comfortable, I headed upstairs to see Jerry. He was sleeping though so Gloria and I had lunch. At 2 pm we got the call from Maddy that Jerry was getting the bone marrow and we should come up. Everyone on the IPOP floor needs to wear masks because all the patients have compromised immune systems, so we donned our masks and entered the bone marrow clinic.
Jerry was on the bed, Chris’s bone marrow was hanging in a bag and there was a long tube running from the bag over to Jerry’s Hickman line. It looked like the reddest, richest, thickest blood you have ever seen. There was no pump, they let gravity do it’s work and the bone marrow would drip, drip, drip, out of the bag and into the tube, and then drip, drip, drip, into Jerry’s veins.
Maddy began to cry telling us how she felt when they brought it in. It was overwhelming to think of the symbolism, the magic, and the life that this represented. For a lot of the day I had been feeling very matter of fact, very in the moment of we are just doing a bone marrow transplant. But I let myself feel the weight of what we were doing, to feel the intense emotional part of this, that we were doing A BONE MARROW TRANSPLANT.
It’s a little hard to explain. I think to get through something like this, there needs to be a duality in your mind, there is the in the moment, one step at a time method of living. It works and it helps to keep you grounded and sane. There is also the hugely overwhelming big picture point of view that makes you realize how unique and special it is that we are doing this.
One of the nurses we saw called this Jerry’s new birthday. Chris’s bone marrow would be giving Jerry a second life. It will slowly migrate from his veins into his bones, it will mesh with his own vascular system and it will begin to produce the very same blood that it produces in Chris’s body. Over the next six months, Jerry’s blood type will change from B negative to Chris’s O positive. It’s a wonder that this works, it’s amazing, and they really can’t tell us WHY or HOW it works. They just know that it does.
After Jerry got all the bone marrow transferred and he was released, he came down with Maddy and Glo to visit Chris in recovery. There was much laughing about how Jerry was now compelled to sing Elvis and wanted to play guitar. He started quoting the Godfather and we joked that he now had Italian blood. We all had on our Team Jerry hats, and Chris was wrapped in head to toe blankets to keep him warm. Jerry was energized and in a good mood, I think he was thrilled that this part was over.
After they left, Chris took a nap and we began what would become the arduous six hour process of getting Chris up on his feet. We thought we would leave around 3 pm and it was already 4 pm. Chris was frustrated with himself for not recovering sooner, and was worrying about being away from the kids. They were with Maggie and were having a great time, but we really hadn’t planned to be gone for so long. I told Chris that there was no pressure; we could be there until midnight if we had to, and he just needed to take his time.
When he would try to stand, he would get light headed and he had been unable to urinate. The nurse did a scan and discovered that his bladder was completely full, so they had to insert a catheter to drain it. After they removed it, we were able to get a meal from the kitchen, and Chris finally ate. After eating, he rested again. When he woke up, we began again, trying to get him to stand and urinate. Truthfully, I am a little foggy on the exact progression, but I know that he was still light headed and still unable to urinate and they had to do another catheter and lay him back again to try to clear his head. All this time his blood pressure, heart rate and glucose were fine. They reduced the amount of IV fluids he was getting and they began paging the doctor to find out what to do. It seemed to take forever but the doctor finally called to say to take out the catheter and that we just needed more time.
Finally, around 10 pm, Chris woke up and seemed to be feeling better. He asked for chocolate and I gave him a Canadian Kit Kat that my sister had sent in the hospital care package. There must have been some kind of magic in there, because Chris was finally able to stand up and walk around the recovery room and within another hour, he was able to urinate. That was all we needed to do to be released, so we began getting our post-op instructions, they reinforced his bandages, took off all the wires and electrodes, and we got him dressed. They wheeled him down to the front doors while I went to get the car from the parking garage. I met them at the front of the hospital and we eased Chris into the car and drove the 15 minutes back to the apartments. We got “home” at 11:30 pm, 17 hours after we had left that morning. The kids had fallen asleep with Maggie and Gloria and had been such good boys all day. Knowing they were so well taken care of was such a relief.
SATURDAY, SUNDAY & MONDAY: Post-Operative Check and Resting at "Home"
We returned to the hospital on Saturday for a check up and everything is looking great. He has three incisions on his back above his left hip and two above his right hip. There is more bruising and he has more soreness on his right side. There are no stitches, just tiny little cuts where they inserted the needle, and most of the healing has to happen on the inside. He is also sore from the intubation in his throat and the catheters.
Sunday he was feeling much better. He had a fairly good night on Saturday, he was sleeping on the couch as it’s easier to up and down from there and was getting up every hour or so, but he got some good rest, as did myself and the kids and we woke up Sunday morning at 8am to Chris looking and feeling much better than the day before. It’s an up and down thing, he is awake for a few hours or so and then back to bed for a nap. He was taking the hard-core pain-killers on Saturday, but Sunday he started taking just Tylenol. He’s eating normally and also took a shower. I expect for him to be feeling better every day.
Jerry has been back twice for check ups and all his blood levels and numbers look good. He is getting chemo today and Tuesday and will probably be feeling pretty rough. Now it is just a waiting game to see how it plays out. We are told to expect that he will get a fever at some point, that he may get a rash, that there will probably be some signs that there is a foreign material in his body, but the hope is that whatever reaction he has is minor and manageable. I believe Day 20 is a milestone day, as most issues will come up by then. Maddy and Jerry will be returning to the hospital almost every day for the next two months for checks and maintenance.
On Sunday Maggie returned home and Gloria, Hank and Jake took the kids to the Baltimore Zoo. Today they all went to the Dino Dig museum and are having fun around the Inner Harbor. I am so grateful to them for caring for the kids so that I can be here at the apartment, taking care of Chris, making him comfortable, feeding him and talking about everything that has happened.
His recovery is a bit harder than he anticipated and I think he is feeling a bit worn out but I know that with each nap and each day, he will be feeling more himself. Today we went for a little walk down to the boardwalk. He is walking much better and can bend down a little, he spent last night in bed and only got up a couple of times instead of every hour. He's watching The Odd Couple, which makes him laugh and eating chocolate ice cream, which makes him happy. I'm taking good care of him and he'll be better in no time.
Once again, thank you to everyone who has been sending us messages and love. We couldn’t do it without you and we have gotten such an overwhelming response from so many people. The nurses at Johns Hopkins were fantastic; Amy, Michelle and Eloisa were all warm, helpful and wonderful. A special thank you to Cheryl and her family for the edible arrangement and we can’t thank Maggie, Gloria, Hank and Jake enough for babysitting Milo and Quinn; they have been so wonderful keeping them busy and entertained while I care for Chris.
We will be here in Baltimore until next weekend, to spend Easter with the family, and will return home to Warwick on the 25th.
Read the next installment - Part Six: Updates and Jokes for Jerry