Chemo Round 2 & 3
Wow, its been busy around here!
Chemo Round 2 started on August 23rd. This round was the same medications as round one and was five days inpatient. We started on Tuesday and Payton's energy was great. Each day the chemo would take about 2 hours, Payton was free to play and run the halls for about six/eight hours and then she would get IV fluids over night to help with hydration. Between the third/forth day of chemo I noticed her Hickman (central line) seems to be slightly moving out of place. The nurse agreed and asked to get an X-ray for confirmation. Sure enough her hickman had slightly wiggled out of place and Payton would need surgery to replace the line before her next day of chemo. On Friday the 26th the surgeon was able to squeeze Payton in that afternoon. She was NPO (no food/drink) from around 8am when she woke up until 3pm that afternoon, she was not a happy kid that day! The surgeon was able to replace her hickman line in the same place without any issue, just with new tubing. He said the dressing (bandage) was too large and gave space for the line to wiggle out of place. He added extra stitching for security and showed me how we should help secure the line going forward. After surgery Payton was able to finish day four and five of chemo and we would get discharged on Saturday afternoon.
After this round of chemo we plan to harvest Paytons stem cells, which will then be frozen and transplanted back to her later in the treatment plan. The stem cell harvest is a fairly straightforward procedure but requires Paytons "counts" to be within a very high range. After each round of chemo Payton receives a medicine called growth factor to help her counts recover faster. Typically growth factor can be given as one shot outpatient but for the stem cell outcome they wanted this shot done daily. After a lesson from one of our favorite nurses, Jenna, I was sent home ready to me Mama Nurse. Each night Jeff would help with distracting Payton and I would give her the quick shot of growth factor. Payton was upset for a minute, but then would get lots of M&M's and completely forget about what had just happened, success.
As Payton's counts dropped and her ANC hit zero, slowing Payton worked up a fever (100.4). On August 31st we ran right back to Hopkins for another admission. Since Payton has low blood cell counts due to chemo and a hickman line, fevers are taken very serious. This could potentially be from an infection and needs to be treated imminently. Payton's fever was just caused from her ANC (immune system) going to zero and was treated with antibiotics until her counts were at a safe place. But we were admitted to Hopkins for about another week, going home on September 6th.
Payton's stem cell harvest was done on September 8th, this was a long day... Payton and I arrived to the outpatient surgery unit at 6:45am. Payton would need surgery to place a PIC line (very large IV) in her leg. This line has larger tubing than her hickman and works much better for collecting the stem cells. During the surgery we originally planned to place a feeding tube called a "g-tube" for future medication and nutrition needs. When I talked to the surgeon that morning we decided the g-tube was not needed just yet. Payton has not had nutrition needs for a feeding tube and since her tumor is on the same side as her stomach the surgeon would need to adjust and fix the g-tub later. So she went in to surgery for her PIC line and then I met her a hour or so later in the ICU. The stem cell harvest is done in the ICU. Because of Payton's age she needed to be sedated for this procedure and the ICU is where you go. The stem cell harvest itself is fairly straightforward and older children and adults are awake for the procedure. The reason Payton needed to be sedated is because she needed to stay still for a few hours, and she is a toddler, so that does not happen.
Payton is a FIGHTER and this day proved it for sure! This girl was fighting the sedation, she kept waking up every 30-45 minutes. The doctors kept having to increase the dose and she kept fighting it. As much as I love her fight and her fierce attitude, this was super hard to watch from the sidelines. I am just happy she will not remember this day.
The stem cell collection from start to finish took about 4 hours. It is a large roll-in machine that is prepped with blood, so as it collects Paytons blood cells it also is giving blood back to her in a safe way. This went rather fast and they were able to collect enough cells for up to 4 transfusion. Yay! Though the collection was complete Payton had to stay sedated for a few more hours. We needed to check her blood counts and ended up giving her a transfusion of platelets before they could safely remove the PIC line in her leg. Once the PIC line was out and right at shift change, Payton was DONE with being sedated. The doctors removed her sedation tube and Payton awoke with a ball of energy. She needed to stay in the ICU for a few hours of monitoring, and we ended up getting discharged at 10:30pm. - shew, long day... We got to go home for a long weekend but return back to Hopkins for round three starting the following Monday.
Round three started on Monday, September 12th. This round is a different chemo medication and was only four days inpaient. This chemo requires extra hydration and typically brings on more nausea. She started with IV hydration around 4 o'clock on Monday and stayed hooked up to the IV until Thursday discharge day. This round went smoothly. Extra stress for me chasing Payton with an IV pole, but overall was an easy good hospital stay. We discharged on Thursday September 15. Since this round requires extra hydration, Payton needed to continue IV fluids at home for seven days. Again Mama Nurse learned how to do an IV and hooked Payton up each night for seven nights. This went great, she kept hydrated and really had no issues in round three. No fever and her ANC never hit zero. She did seem to have lingering nausea, but not terrible. Typically she gets sick, says "uh oh" and keeps on with her busy toddler self. Like I have said before, she is a ROCKSTAR!!!
After round three we have had our longest home stretch since diagnosis! A little over a month at home and we have been enjoying every minute :). Of course we regularly visit Hopkins for outpatient lab work and to keep a close eye on Payton. But over all Payton loves all the attention from staff and nurses on our hospital stays so they are typically rather happy! She is a rockstar and my little hero!
Stay tuned for our MIBG CHOP adventure in my next article. We start Round 4 tomorrow, October 17th. So sorry it has taken me so long to update. Life just gets very busy as a full time cancer mom and full time employee/wife/friend/human. Thank you ALL for the support, love, and prayers. We could not be as positive about this journey without your support and love. xoxo