Phase 2 Consolidation Clinic Visits

On Jan 2nd we were schedule to visit the clinic at 8am, and then have Molly's lumbar puncture done in the OR at 10am instead of in the RTU because the RTU was completely booked that day. So we get up at a very early hour, made sure Molly didn't eat or drink a thing, and drove up to PCMC. We had to visit the Operating Room check-in first and wait for 30 minutes to be "processed", along with several other children and their parents. Then they sent us back up to the clinic to have labs drawn. After labs, we went back down to the Pre-OR waiting room where they gave Molly some hospital jammies to wear and had me take out her earrings. We got taken back to the OR waiting area where they had several beds and chairs and TVs and some video games. Since I expected we'd only be there for a few minutes, I held Molly in my arms and sat in a rocking chair while she played on my phone. 

Molly fell asleep eventually and the nurse there came to our chair and told me that they expect we'll be taken back at 11:15a. So we waited. And Molly woke up. And wanted juice. And wanted goldfish crackers. And cried. Because she couldn't have anything to eat until after the procedure. 

I'm trying to be a happy mommy with a very unhappy Molly in the OR waiting room.

It got to be 2pm and I finally went to the desk to ask when we were going to be brought back. Of course they didn't know, so they called several people and finally told me that there was one more person ahead of us, and asked if Molly needed to be given anti-anxiety medicine through her port because I couldn't go back with her; they would be carrying her back without me. Well I thought she'd be ok, and I didn't want them giving her any unnecessary drugs anyway. Around 3p, they took her back (and she cried so very much when I put her in the OR nurse's arms) and I went to the parent waiting area, where I waited for only about 40 minutes until they came and told me Molly was awake from anesthesia and I could go see her.

In the post-op recovery area, Molly was on her 3rd bottle of juice, and asking for more. They were so impressed with how thirsty she was (what did they expect? She had waited ALL day for something to drink!) and we were told we could leave as soon as they could figure out how to de-access her port. Seriously? These people see all kinds of patients everyday, and they took 20 minutes trying to "learn" how to take the needle out of her chest (which I had done before and tried to explain it to them myself). They also had to wait to find out what kind of anti-clogging medication to put in her port before taking the needle out (which I had in my bag right there, but they wouldn't listen to someone so unschooled as me). 

Molly with her juice sippy they gave her in post-op.

Needless to say, I was incredibly disappointed with the way everyone in the OR department handle everything. I hope I never have to go back there again.

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On Jan 9th, we were able to get a spot in the RTU. We had the clinic visit at 10:30a so Molly could have some juice at 9am, but I didn't have any juice to give her so I did some researching on liquid diets and ran across a forum for colonoscopies where I learned that if you take a light-colored jello that's not red and mix it as usual but don't refrigerate it, then it is a good substitute for apple juice or water. So I found way in the back of my cupboard some peach jello, and gave that to her. And the doctor at the clinic said that was fine. 

This week at the clinic, the nurse came in to do the port poke and I had Molly laying down on the bed. I held both her hands as I usually do when they are going to do something she'll likely not enjoy, and she just sat there and watched them the whole time! No crying! The doctor and the nurse agreed that this was quite unusual and I should give seminars to parents on how to calm children down. I realized this week that I had created somewhat of a comfort routine with Molly; holding both her hands, and diverting her attention with songs, and questions about what Big Sis might be doing at grandma's house.

We learned that the RTU had a cancellation and so we got to go down early. Molly insisted on walking down the hall instead of riding in the stroller, so I let her. And the nurses all fell in love with Molly in her pigtails and footsie pajamas, waddling into the RTU.

This week Molly is so much happier than last week!

 While Molly was just waking up from the lumbar puncture this week, one of the nurses came in and expressed concern for a bruise she saw behind Molly's ear where her earring sits. I explained to the nurse that it wasn't a bruise, just a mark from the earring back because it probably has nickle in it. I told her it would wash right off, just like if you had a ring from the quarter machine which left a green mark around your finger. I also got a phone call a few days later from a very concerned oncologist himself who said I shouldn't let Molly sleep in her earrings because it looks like they are bruising her skull and he was worried about possible infection. I explained that it was just discoloration, and then went right over to Molly and took an alcohol pad to the "bruise" and it washed right off. Hopefully I don't get comments on that anymore, as I will try to keep it washed.

We've got 2 weeks off from clinic visits before the next phase. I am still giving Molly Septra on Mondays and Tuesdays to prevent pneumonia, and I am giving her 6-MP (mercaptopurine) every night at least 1 hour after she eats dinner. All her lab results have been excellent, everything is very promising. 

We changed our diet, and Big Sis hates it. She doesn't like the whole wheat spaghetti (neither do we... so we're not having that again) and she doesn't like that she has to eat veggies now. Today we had turkey burgers and roasted organic summer squash. I think we all liked the turkey burgers even better than beef burgers! And I finally tried making rice and steaming broccoli at the same time in my rice cooker... that turned out too easy to fully express how pleased I am. 

I am trying so hard to make this life more normal for myself and my family, but our homeschool and chores are falling behind, I get sad sometimes because I wonder if Molly is just going to die of cancer anyways, and I get sad because we were planning on buying a piano in 1 year, paying off all our debt in about 3 years, and building a house in 5 years, but those all have to be pushed back an unknown amount of years because of this ugly creature dancing with Molly. On my low days, I just want to lay in bed all day and exist without responsibility or desire. It's difficult. But I carry on.

P.S.

If you're wondering about how to donate to the Molly fund (we found out our deductible was misleading and we actually have to pay almost $12,000 per year before the insurance covers anything), we have this nice little yellow-orange button at the top-right of this blog page that says "Donate." We really really really appreciate everything that has been donated so far, and the time given by several people taking care of a few things for us.

P.P.S.

Please comment if you have anything to say or if you have any additional questions about the post above you would like answered.