This morning started off poorly when we were racing around to get ready to head to Salt Lake and Serenity threw up all her medication and had to be redosed. It meant some shuffling to get the other kids where they needed to be, but once that was done things settled down. And Serenity got her hair cut! (pictures to follow when I can figure out how to get them off of my phone)
I was a little sad to see it go but I felt it needed to be done to make her more comfortable and to help her prepare for the fact that her hair will fall out in the next 2 to 3 months. She looks pretty adorable and the cut suits her I think!
This morning we headed to Primary Children’s for a 12:30 appointment at the Oncology Clinic. We got there a few minutes late and the receptionist informed me that we needed to go back downstairs to Registration and get paperwork there first. There was a big line and whole lot of sick people so Phil took Serenity back out to the car to get a mask so she wouldn’t be exposed. It was almost 1:00 when we got back to the clinic & she had her blood drawn. While we were waiting for her results the Child Life Specialist came by and played with Serenity and gave her a little necklace with her name spelled out in beads. Each bead represents a procedure or milestone and she started out with 12 beads to represent all that she has already been through!
Serenity had another dose of chemotherapy and then we were sent down to the Rapid Treatment Unit where she was scheduled for a lumbar puncture and bone marrow aspirate. We had to stop at another Admitting desk and get more paperwork. When we got to RTU they told us that the clinic had just called and Serenity’s platelets were back down to 5 so they needed to transfuse her before doing the procedures. I should add here that Serenity hadn’t been able to eat anything since midnight or have anything to drink since 11:00 in order to prepare her for these procedures. It was now 3:30 and she was hungry and tired and getting fussy.
We sat in the infusion room waiting for her platelets to arrive. We had the unfortunate luck of being seated right in front of the refrigerator, so that every time someone got a soda or juice from the fridge Serenity would ask for one, and then start to scream when I told her no. To make matters worse someone in the room had reheated leftovers in the microwave, so the whole room smelled like Chili’s. I was starving and I had eaten more recently than she had! Phil sat with her while I snuck down to the cafeteria for a bite, but they were closed for cleaning.
When Serenity finally finished receiving her platelets it was about 5:30. The RTU was closed for the day so the doctor suggested we have her sedated in the clinic and have the procedures done there. She was unhappy and crying when they sedated her. It was so strange to see her eyes jumping around as she was losing consciousness. Phil & I chose to step out of the room for the procedures. I had a strange feeling watching her fall asleep and didn’t want to be there. Her procedures didn’t take long and then we came back in the room while she woke up.
Serenity stayed on the monitors for a very long time because they were showing her heartbeat to be very erratic. As it turned out the monitors weren’t ready properly, but it took several people and quite a while before the cause could be determined. While she looked normal and was enjoying her Cheetos, Phil and I both wondered whether we had reason to be concerned because her heartbeat kept dropping quickly.
Finally it was decided that she could have the exterior line to her port catheter removed. By this point Serenity was feeling very traumatized and worn out. She protested being held down and having the tape pulled away from her chest. We tried to be as gentle as possible but she screamed the whole time at the top of her lungs. Between her screaming, the strong smell of the orange oil solvent, and not having eaten for many hours, I started to feel light headed and thought I might throw up, so I left the clinic and went and sat down to clear my head.
Finally! it was time to go home. Serenity was much happier & so were her parents. We grabbed a quick bite to eat from the cafeteria and ate outside near the water fountains. It was the first peaceful moment we’d had all day. We weren’t too far from the hospital when I remembered we hadn’t picked up her prescription. We turned around and went back to the hospital for that. (The doctor prescribed her a pain medication in the hopes that even if her leg pain gets worse she will be able to tolerate standing soon.)
Phil was exhausted so I offered to drive home. Somehow I got turned around on the freeway and ended up retracing our steps for 5-10 minutes before I realized I was headed the wrong way. I woke him up and we switched places and drove home.
I had to pick up my children from my sister’s, and when we got home I ran my teenager to a job interview, then came home to a chaotic household so exhausted I could barely keep my eyes open. A friend brought pictures over for my children that her kids had drawn. They were a huge hit! Tonight Serenity fell asleep happier than she’s been in a few days (I think because her external tubing is gone) but I am dreading doing this whole thing all over again for the next several weeks.
Just a helpful suggestion, as I had been through many long clinic days with my own father during his treatment. Pack snacks in a little soft sided cooler bag w/gel ice packs. It will come in handy when the cafeteria is closed or you dont wish to leave Serenity’s side to get food. Clinic days can always turn into longer days, because of scheduling conflicts or unforseen circumstances like needing platelets. Also, there will be times when she will be able to eat something and might want a familiar snack from home. It is so important to keep her nutritional status up when you can, especially when there will be those times when she will not want to eat or will be too nauseous to keep food down. Milkshakes are very soothing and healthy especially if you add fruit to them like a smoothie and serve to her in a special character sippy cup…..Some ideas of nutritious things that we packed were juice boxes, partly frozen to keep cold, string cheese, apples, grapes, crackers, cookies, granola bars, yogurt, nuts and sandwiches or wraps. Serenity might like her own homemade “lunchable” …a small plastic container with divided sections filled with slices of cheese and sliced turkey rolled up, and crackers, and then maybe some grapes or cookies. I find that kids always love to have their food in sectioned compartments! They also tend to eat better too ! Praying for Serenity….
Reading about your day makes me feel exhausted, let alone actually living it! That’s so awesome that your hospital does the beads, too! The hospitals here do it, too.
When I gave you back your blender, I didn’t want to give you any advice, because I am sure you don’t need any right now! The reason I borrowed the blender was to make green smoothies (check out http://www.greensmoothiegirl.com). I’m not sure what kinds of foods Serenity can eat now, but the green smoothies are full of greens (obviously) and fruit, AND they taste fabulous, to me at least. My baby will fight me for the cup so that he can get it. My 4 and 6 year olds like the smoothies too. My husband thinks they’re disgusting. So, 4 out of 5 of us love them, and they might be good for your family if getting quick nutrition is an issue! And like Ashley suggested, they could be taken along in a cold pack.
Here are a couple recipes I made recently:
http://katieswords.blogspot.com/2008/05/fabulous-beginner-green-smoothie.html
http://katieswords.blogspot.com/2008/05/cheater-green-smoothie.html