Penelope and her Best Dog Marilyn watching fireworks

Just when we thought that light at the end of the tunnel was getting closer and brighter we hit a long bumpy road…that went uphill. Round 6 of chemo was only a one night stay, as we expected, but smooth would not be the word I would use to describe the time following chemo this round. It would be more like…ugh. My sweet ladybug weighed in at a whopping 12.8 kilos (28.16 lbs) at admission this round. In the chemo world, or at least the protocol Penelope is on, when you weigh less than 12 kilos the dosage is calculated by weight and when you’re above 12 kilos it is calculated by body surface area (not sure what happens when you ARE 12 kilos). Dr. Ahn explained that because Penelope was over the 12 kilo mark that the increase in dose would be a big jump for her, she is a tiny giant. We were supposed to expect her to feel, look and act worse. What happened was not what I expected.

The week and a half following chemo was difficult, for her and for us. Poor little girl was sick and crying all the time and all she wanted was mom to hold her, no playing with her no sitting next to her, hold her. This obviously made it very difficult for me to get anything done, including post, because I was…well…holding her, and she isn’t one of those babies that fits in a carrier. With the throwing up three of four times in a 24 hour period my laundry went through the roof, as if it wasn’t hard to keep up with before! On top of the clinic and doctors visits that whole time I was completely exhausted. Once that period started to clear up, I was absolutely forced to deal with some of my own medical issues that I had been ignoring in the wake of Penelope being diagnosed. So the short week I had where she felt well enough that I could leave the room I had several doctors appointments myself to add to her doctors appointments. When we thought all was well and running smoothly again life decided it would come along and correct our thinking. The night of the 19^th Penelope woke me up screaming and crying in her sleep.

Trouble maker taking all the diapers out of the bag

It didn’t make much sense because she only did this type of screaming when she was getting her GCSF shots and she had been done with the cycle for three days already. I calmed her down each time and she went back to sleep. The next morning I heard her chatting it up with her friends Elmo, Lamb and Hippo in her crib and went in to get her. After our morning hugs and snuggles I put on KPBS and started coffee while she ate her Cheerios. Within an hour of getting up she was rolling around on the floor and covered in diarrhea. Like armpit to ankle covered. Mom and dad spring into action and we get her in the shower and hose her off get her dressed and then chalk it up to chemo. The diarrhea didn’t stop at all and just continued to get worse. I called our nurse case manager, Chrystal, on 21^st and she told me to watch for a fever and any additional symptoms and call her if something changes. That afternoon around 3pm I was giving Penelope a bottle to put her down for a nap and she pulled the bottle out of her mouth, sat up and looked at me and just projectile vomited all over her and I. Major freak out time for Mom. Aaron had just gone to run errands that I needed done but had been putting off because of the poop situation we had going on so it was just me and her. I grabbed an empty cup on the coffee table and caught the next round as I rushed us to the shower, again, for the 4^th time that day. We just hosed off, she puked some more, we washed up, added our clothes to the laundry pile we had going and called Chrystal. While I waited for the call back I am cleaning the carpet and checking Penelope’s temperature. When she calls back I let her know there was no fever and we were due to be in the clinic on Friday so she said just to be safe we would move our appointment to the next morning, Thursday, at 8:30a and she would also have a doctors visit. Just to clarify, clinic visits aren’t always doctors visits but doctors visits ALWAYS have a clinic visit an hour before. That night there was no more puking but the poop didn’t stop and just got more and more watery and after throwing up Penelope just refused to eat or drink anything. That night we all slept in the living room on a pad on the floor.

So sick and so happy...for the picture

The clinic appointment was strange. I collected a stool sample from home that morning because Penelope woke up covered in it again and we just hopped right in the shower. They sent the sample for culture and put us in an exam room just in case she had something that could get the other kids sick. We waited for a while for the lab results to come back and Dr. Ahn surprised us by seeing us. She was inpatient but sees when her patients have appointments on the computer and she came right over. They didn’t see anything really wrong. Her ANC was 2700, which is perfect, her platelets were 37, which is low but not a critical (20 and transfusion) low at that point. Dr. Ahn ordered hydration for 2 hours because her blood sugar was low from not eating and she was dehydrated from the diarrhea. She told me to watch for petechiae or new deep bruising. As we laid on the exam table watching TV as she hydrated I noticed the petechiae dots starting to pop up, not in bunches but singularly in a lot of different places. I told the flow nurse and Dr. Ahn called for platelets and for Penelope to have IV hydration at home. We ended up being at the clinic from 7:50a until 5p with two big poops in between. Once we left we had to fight traffic back home and meet the home care nurse to set up the IV. Home care got to the house around 6p, set up and left by 7:15p and then…more poop…in the shower again. We got her out of the shower, put on her jammies and I made several failed attempts to feed her and give her a bottle but ended up just bouncing and rocking her, and me, to sleep.

Friday was better-ish. We had fluids, she was in a little bit better spirits and although she still had diarrhea like I have never seen before, she was enjoying her shower time now at least. We went for a walk that day and that I about all we did. Her stool sample came back negative for both C. diff (Clostridium difficile) and Rotavirus, which are the two things they thought was giving her diarrhea, so we just thought we had to ride it out and see if it got better. Aaron and I were okay with that as long as she was hydrated and still smiling. The frequency of the bowel movements seemed to decrease even though it was still a whole lot of very watery and very smelly poop. Saturday afternoon after our home care visit Penelope started to act very sleepy. It was about her nap time so it wasn’t terribly alarming but when I went to lay her down she seemed warm to me. I thought I was just being a worry wart of a mommy but as she slept her cheeks started getting flush. We took her temperature and it was 98.6. Thirty minutes later it was 99.5. Thirty minutes after that it was 100.1. Ten minutes later it was 98.9. We continued to check her temperature every 15-20 minutes for the next three hours. We have a temporal thermometer as well as the axillary one and the axillary one hit 100.8 and we called the on call Hem/Onc doctor. By the time he called back, maybe 15 minutes later, I was showered and changed, we were packed and Penelope’s temperature was 101.4.

I will leave it there for tonight. I had a long night and day with her here at Children’s with diarrhea, blood transfusions, crying and crankiness, being quarantined to the room and dad being out of town for work. I totally apologize for not having a chance to update you before now but in the last 25 days it has been nonstop. Just with all of her medical issues we deal with on a daily basis we have all the normal things everyone else does too. Aaron works full time, I have a house to keep up with (cleaning, laundry, grocery shopping, errands, and meals to prepare), we have a marriage to remember and a beautiful daughter to cherish good times with when she feels well. We actually were able to make it to one family function, my little cousin Robert’s birthday, which I absolutely didn’t want to miss. I also helped get Marley to radiation and clinic a few times a week since her dad had to work. Time is just flying so thank you to those of you who continue to support us, pray for our little girl and understand when we can’t get updates up quickly. Please know that we appreciate you all and you’re always on our minds. I will continue the update tomorrow since we won’t be leaving here until sometime next week and it is just another long story from our admission until now. Thank you again! See you tomorrow!