Jesse and I headed out to clinic this morning around 6:15. Highlight: made her great uncle jog some while trying to talk to me. He has started a new exercise plan. If he sticks with me I’ll have him jogging in no time. (Couch to 5k!!!).
Traffic was great. We arrived at clinic at 7:15.
Due to Christine being diagnosed with bronchitis yesterday, Jesse was placed in a room. She wasn’t happy about this, but I told her sorry we aren’t taking the chance of infecting other people. She settled down and played with her ipad. This was a huge treat because the girls have lost the privilege to watch TV since they want to talk to me when I am on the phone, can’t get along, and won’t listen to me. We’ve been without TV for two weeks. Their dad told me the other night Jesse sat in his lap and asked to watch football. I have also had Christine tell me whatever I wanted to watch on TV was okay with her.
I talked with her doctor about her skin. We had to conduct an emergency tape change Sunday because she spilled grape juice on her chest. When I cleaned her skin with the cloroprep it bubbled up like a chemical burn. The doctor felt this was and the redness of her hands are due to the Accutane. We also talked about the redness of her hands. The doctor explained her circulation was great and showed me the ways to test.
Jesse’s counts are great, save for the IVIG. The infusion began at 10:15 lasting two hours and 15 minutes. While we waited, Jesse ate some of the food I had packed. Our nurses stopped by to talk, and the nutritionist came to check on her. The nutritionist came because Jesse weighs 11.7kg. Last week she weighed 12.1kg.
I get very frustrated with the nutritionist. In fact today I told her today I was not starving my child. If this woman would read the protocol of drugs Jesse takes and the side effects, she would learn that Accutane affects appetite. I think this is the second time I have told her this. The other times I have seen her have been during antibody when Jesse is not interested in eating either. And these are times when my frustration level is already high because I have been trying to get her anything she will eat to only have her reject it when I get it to her.
Her suggestion is always pediasure or ensure. It’s a nice thought but I can’t afford to waste $7 for 4 bottles of Ensure or Pediasure that Jesse will only drink a sip of. It amazes me… We complain about our society being overweight, but when the child doesn’t meet the predefined weight qualifications it becomes a huge issue. I do understand in some cases this is a sign of abuse, but in our case to have to deal with some carrying on about Jesse’s weight when she is running, playing, does eat, and acts normal (save for the moments of Accutane rage) is a slap in the face. Not to mention one of my brothers was a small child, plus her maternal great-grandfather was only 4ft 11inches and skinny his entire life.
My other rant on this is I am not a buffet. I will not have a brat who thinks I should cater to whatever she wants to eat. She needs to learn to eat what is served to her and be happy she was fed. She also needs to learn to try new foods, broaden her food horizons. My mother never made a “special” meal for us. If we didn’t like what was for dinner, breakfast was served in the morning.
Ok I’m done 🙂
Child life came around bringing Jesse a Minnie Mouse coloring set. It is a really awesome little set. I have left her in the kitchen with the markers supposedly coloring on paper. This might not have been a wise move on my part…
Now that we have completed the Accutane, Jesse will be entering into the scans phase. Next week we will have a bone marrow biopsy because that has to occur within a certain number of days from stopping the Accutane. We had hoped to incorporate that with one of her scans, thus cutting down on the number of times she will have to be put to sleep. Plus we wouldn’t have had to wait on a time the anesthesiologist had. Now we will arrive at clinic at 8:15am, and don’t know when she’ll be put to sleep because it will depend on when the anesthesiologist has time. Their schedules are planned out months in advance, and the cancer kids get squeezed in here and there.
In January, Jesse will have CT Scan, MIBG (Scan with nuclear medicine that highlights the hormones put off by neuroblastoma), and bone scans. They will be over a two week period. We are praying that there is no change, or miraculously the tumor has shrunk more.
Wishing everyone a Happy and Peaceful Holidays.