Chemo Round 6 & 1st Bone Marrow Transplant
First off this post is way overdue and extremely long, I am sorry! I think after reading you will understand how exhausting Payton's transplant admission was and why I needed some time at home to decompress and get my thoughts together. Thank you for reading and all your support :)
After round five chemo recovery, Payton was scheduled for many test which included re-imaging and re-scanning her in preparation for her Bone Marrow Transplant. Most of these tests are to give the doctors a baseline for how Payton is responding to the chemo and if there are any issues going in to BMT (bone marrow transplant). Over all Paytons tests looked great. Her cancer has been responding wonderfully to chemo and is not highlighting in the MIBG scan or bone marrow (YAY). Two tests that came out with some concerns are her kidney function and hearing. Her kidney function is not great, as it is at about 55% - at this point we are unsure if it is due to medication or pervious injury. Payton is also showing some hearing loss which is a side effect of previous chemo and she will most likely need hearing aids after transplant.
As we were preparing for transplant and during her testing, Payton was not feeling her best. She was having some vomiting and diarrhea when her body should have been happy and healthy. Adenovirus was detected in her stool sample. Because of this the doctors checked for Adeno in her blood and reordered her kidney scan. Luckily she did not have Adenovirus in her blood (which would be worse). But when she was feeling better and well hydrated her kidney scan was still coming back at about 55%. This virus pushed back Payton's admission about two weeks to help her to recover.
On Friday, January 20th we were admitted to 11S room 5 - which is basically the 11S suite. We were nervous and anxious to get chemo started. This round of chemo consisted of two different chemo medications. The first chemo called Thiotepa is excreted through the skin and requires a bath every 6 hours for four days. Along with the baths every six hours we would also need to change Payton's dressing on her central line, change her bed linens, wipe down the room and any toys, change her clothes and anything she was in contact with - for FOUR days! The second chemo is called Cyclophosphamide. Both are high dose chemotherapy and side effect are mucositis and low blood counts which makes it easier to get infections.
The first four days of baths was surprisingly ok, maybe we were prepared? Payton does not take many baths currently due to her central line (Hickman) not being allowed to get wet, it just makes bath time at home not as fun and more challenging. So naturally I was a little nervous for Payton to jump right in to having a forced scrub bath every six hours. Our schedule was 4 baths a day at 5am, 11am, 5pm, and 11pm. Me and the nurse would use the hallway bathtub, I would hold Payton down and the nurse would clean and scrub Payton. Payton screamed just about the whole time on each bath. Once the bath was finished we dried her off and wrapped her in a heated blanket, at this point Payton was all smiles and would just say "done" in such a happy tone. She was a trooper for sure. Then we would return to our room where another nurse had changed our sheets and refreshed our room. I packed every throw blanket we owned to keep these on rotate because Payton always needs her own blanket.
During this first week of chemo Payton was in a great mood, happy and running around non-stop. Our room was right by the playroom and she would typically go at least twice a day. We would walk to halls and she would enjoy all the attention from nurses and staff throughout. Chemo and baths both ended on Wednesday.
Friday, January 27th was Bone Marrow Transplant Day! Payton was still feeling great with really good energy. Transplant was scheduled for just around 2pm. The bone marrow transplant doctor arrived to the room with her cart of supplies and Payton's frozen bone marrow. If you remember correctly, Payton was her own donor back in September right before round three of chemo. She had a procedure done that collected enough bone marrow for four transfusions. The doctor thawed, hung, and infused Payton's bone marrow right in our room while Payton napped and snored her way through transplant. The process was awesome to watch and very quick. Payton woke up right as the infusion was finished and did great! Transplant has a weird odor similar to the smell of creamed corn. The odor is from the preservatives to keep the bone marrow frozen and luckily did not last very long for Payton. We went to sleep happy Friday night.
Saturday Payton was starting to be a little more sleepy and less energy. By Sunday we could see chemo starting to hit, Payton was tired with low energy. She started a fever around 8pm that night and had a some mild congestion. The fever was likely due to her ANC (immune system) hitting zero, as she typically gets a fever at this point. Throughout Sunday night and Monday morning Payton's fevers keep climbing to the 103 range and would not go down with Tylenol. Poor babe, it was a rough night.
On Monday the doctors decided to swab Payton for virus since she was having congestion. They were pretty sure the congesting was the start of her Mucositis but wanted to check just in case. Well.... what a surprise to everyone, Payton was positive for COVID!!! Like what?!? Right now - in the middle of zero immunity, high dose chemo effects, low blood counts, high risk for infections, bone marrow transplant, and all the above. My mind was racing and I had no idea what was going to happen.
Our COVID isolation was to begin... I had to pack up everything in room 5 (the penthouse suite) and move down to an isolation room. Luckily we have the absolute BEST nurses, and they were so very helpful. They basically hauled all my bags to our new room as I packed up our other room. I was panicking inside, slightly angry, confused and just not sure what my feelings were. Our isolation would not only be for Payton to stay in the room for 21 days (yes 21 days, not 5 or 10) but also for me to stay in the room. Jeff would be allowed to come visit and go to work, but he had to come right to our room and stay until he left. We could not use the family kitchen or laundry and were not allowed visitors. The nurses would need to bring us water, ice, food, and do my laundry. Limited staff could enter the room and when they did they were in full PPE including a protective gown, KN95 and second mask/face shield. I cried once we left room five, not sure how I was going to get through these next three weeks of isolation with a sick two year old who loves to run the halls and all the attention. I would basically be by myself most days, just me and Payton.
Tuesday Payton's fever continued but was lower during the day hours, at night she spiked right back up to 103-104. At shift change around 8 the nurse noticed Payton's blood pressures where lower than normal. Before today Payton has been on medication for high blood pressure, so low blood pressure felt weird. That night we went to sleep but the nurse said she would be in pretty regularly to check Payton's pressures. Right around 2am our nurse came to me and said the doctor is going to come in and talk to me, she was going to turn on the lights. Wow - everything is kinda a daze from here. The doctor said he was concerned about Payton's blood pressures and her high fevers of 104 and he wanted to call the PICU doctors to come evaluate her. So our nurse pushed the call button which sounds an alarm to the PICU doctors and all other staff on the floor. Our room was quickly rushed with nurses and doctors everywhere, I would estimate about 15 people in our room and just about the same number or more outside of our room ready for action if needed.
Payton's pressures were still staying low and causing major concerns of infections for the PICU doctor as well, they pushed some fluids to help stabilize her but Payton was still not giving them the numbers they wanted. We were heading down stairs to the 4th floor PICU. Jeff and I grabbed shoes, a sweatshirt, our water, Payton's iPad and we rushed downstairs around 2:30-3am.
If you ask any PICU nurse, they will tell you all oncology families do not like the PICU floor and on this day that was us for sure!! Payton is a covid patient, so we were on complete isolation and if Jeff or I left the room we would not be able to return. Once we got to our room there were doctors and nurses everywhere getting Payton's information and examining her. Payton was doing ok, she was just really upset at being disturbed and did not like all the lights shining in her eyes. We were asked lots of questions and it was a mad rush for the nurses to figure out what IV's Payton was hooked up to, what medicines to start, etc. Her blood pressure cuff was going off about every 15 minutes and Payton seems to stabilize on her own around 5am. Things seems to claim down some, well at least as much as the PICU can be calm. Payton had every monitor hooked up for the doctors to see what was going on and just watch her throughout the morning.
This was by far the most stressful situation I have ever experienced. My baby was just rushed to the PICU at 2am, we are around doctors and nurses we do not know, and we cannot leave our room for fresh air. The nurses didn't have pretzels or any food to bring us, just coffee and water. So here I am eating beef jerky from Jeffs backpack at 5am in a small room, with no TV, no phone to call the nurses, and one toilet in the corner with a shower curtain (no door). My anxiety was high, I was extremely worried about Payton and I had no idea how to handle it. Our day time nurse was a little better, she did find Jeff and I turkey sandwiches which helped. We also got to talk to our oncology doctors about Payton's plan for the day. Since she was stable and doing good in the PICU oncology was comfortable bringing her back up to 11. They also told us our room on 11S was untouched and ready for us to return once PICU was ready to release us. The PICU doctors wanted to monitor Payton a little longer but were happy to send her back upstairs if she stayed stable through the day.
That night, Wednesday, right around shift change our PICU nurses got the okay to send us back up stairs to the oncology floor because Paytons pressures were stable and she was looking good. So back to our isolation room we went after a little less then 24 hours in the PICU. Payton was doing ok but she was still having high fevers. Her other chemo side effects had started right around the drop of her ANC on Sunday including some bad diaper rash, the mucositis, and vomiting. We had Payton on IV nutrition because she couldn't keep anything down, she was on a few different antibiotics for her fever, and she was on a medication for covid.
But wait there's more......this is only a small portion of our stay, we returned to the PICU a few days later...