Quick catch up – after the TPA worked that holiday Monday we had labs that following Wednesday and of course her lines wouldn’t draw again. We did the TPA all over again, making it a long clinic visit that day. After an hour in her lines, they pulled the TPA out and they were able to draw from them again. Needing TPA twice in less than a week made me very concerned since this was a newly inserted line and I was afraid that something was going wrong with it leading to Penelope having to, once again, have surgery. I spoke with the Nursing Director of the clinic, Susan, and she said there are several other things they can do before surgery if it continues, like a dye study to check for clots. We made a follow up for Friday to draw labs to check her counts and to double check that there wasn’t a need for TPA again. Friday went amazingly – whew!

Penelope was ordered some braces for her legs as well as for her back and we were able to pick them up and start wearing them this round. She has AFOs (ankle-foot orthotics) for her legs and a brace to help alleviate the curvature of her spine from surgery as well as the size of the tumor that pushes her to the right. She hates them but she has to wear them for a few hours everyday until we go to the spinal defects clinic.

Round five put us in the hospital over Father’s Day weekend. We were directly admitted on Friday morning and we got there really early so we could start early and be able to get out early. Things didn’t go exactly as we had planned. Apparently there was some miscommunication and our nurse wasn’t aware of our pre-admission clinic appointment when they drew her lab counts, had me sign the paperwork, took her physical and history so she started doing it all over again. We got to the hospital at 8a and by noon we hadn’t started chemo, which I thought was an unusually long time. Aaron and I were uncomfortable too because even though they knew we were coming, our room was lacking normal conveniences like the bed chair…really it was lacking two chairs at all. Since we were sharing the room for the first half of the day, one of us was standing for the majority of the morning. We asked the nurse for another chair and she told us it would be a half hour because they were going to rounds. A half hour?? For a chair?? I was a little bit frustrated and went out to the nurses station to see if someone could get me a chair. It’s a little bit frustrating when your nurse isn’t available. Sometimes it feels like everyone has the “that’s not my job, I’ll call your nurse” attitude. I think it is just ridiculous. I understand when people are busy but when I walk up and they’re are just sitting there chatting then someone can get moving on it. Needless to say I was able to get a chair. After rounds our nurse never made it back into our room, which led to the question of where the chemo was. We made sure we over hydrated Penelope with 20 ounces of milk before we came, I put the cotton balls in her diaper before we left the house so as soon as we got there they could have a urine sample, we thought we did everything we were supposed to do. Having done the pre-admission appointment normally allows them to preorder the chemo so we can start quickly. You can see what happened here.

I finally was able to get the charge nurse for the shift, the amazing Carol, to come in and get things rolling. We obviously still had to wait for the chemo and ended up getting started at 1p but it was about the best we could expect after the morning. It is just so difficult to keep a 14 month-old busy in a small double room for that many hours. So the way the chemo ran, for this round, is she got the Cyclophosphamide (which they refer to as Cytoxin for some reason) which requires prehydration over 2 hours and runs over 1 hour. With our extra milk we were hoping that her hydration would be high so we could decrease the hydration time but as I explained above, it didn’t quite work out that way. After the 1 hour of Cytoxin, we started the Etoposide (ETOP) which runs over an hour for 3 days every 24 hours. The ETOP requires posthydration on day one but day two and three it is up to the doctor on call and how well Penelope is holding up. This would make us discharged at 3p at the earliest on Father’s Day. Because protocol calls for the chemo to be given every 24 hours we really had no other option unless the doctor on call felt it would be okay to bump her ETOP up on days 2 and 3. When the doctor made rounds we discussed it with her and she mentioned being able to possibly do it but she would have to review Penelope’s chart. I suppose that is the best we can do at this point.

Everything went smoothly. Penelope was super cranky after the Cytoxin and that didn’t change over the next few days. Luckily our roommates left on our admission day and we didn’t have any other roommates over the weekend so it made it nice to be able to manage her being cranky. The doctor approved us starting her day 2 ETOP early and her day 3 ETOP at 10a! It ran over an hour and we were out by 11a! Having stayed in the hospital on Mother’s Day it was nice to not have to stay on Father’s Day, at least not for the whole day. We went to dinner that night and Aaron got a Chargers BBQ tool set and I framed the poster from the first benefit show for him. He had been wanting it done for a long time and it was a difficult size to find but with a sweet Micheal’s coupon for custom framing I was able to have it done.

Over the next two weeks we just tried to catch up again and hang out as a family and with some of our friends. We went on some walks when the weather was nice. Penelope and I went through our closets and donated a few bags of stuff to the Goodwill, which took a little longer than it probably would have doing it by myself but it was fun. We put together her kitchen that Grandma Alyce bought her, which she loved but got very frustrated that she couldn’t stand up to play with it. I just sat with her for a little while and helped her play.

On day five of her ten day GCSF shot schedule she was having a terrible time sleeping. She woke up screaming in agony about every 30-45 minutes. It was awful. She ended up sleeping with me in the bed and kicking dad onto the couch but he had some middle of the night work to do this week so it wasn’t terrible. On day seven her ANC was up to 24k, which is 8 times normal which probably explains the sleepless nights, so we held her GCSF shots day seven and eight and when we go in today we will check her counts again to see if we do her GCSF for days nine and ten. Penelope has an MRI on Friday and has to have a doctors visit and a history and physical done before the MRI so we are taking care of all of that today as well. She is continuing to do amazing with the increase in her leg function. It really does seem that with every round of chemo she is able to move more and more. As of today she is able to get her legs underneath her and crawl, in a modified way and a slower than normal rate but she is working it out. We brought our dog, chihuahua fox terrier mix, Lola home and she definitely seems like motivation for Penelope to move quicker since Penelope tries to catch her.Her bald spot in the back is also starting to fill back in! Yay baby girl!

Our next round of chemo is only a one night stay. We will be admitted on Thursday the 8th and released on Friday the 9th, given everything goes smoothly. This round she is getting CARBO, Cytoxin and DOXO, which is a little bit frightening to me only because the DOXO makes her sick and the Cytoxin makes her very cranky so even though we are only staying one night I have a feeling we have more in store for us when we get home than we have had in the past because of the combo of drugs but it puts us one more round closer to the end and that makes it all worth it to me.