Today's appointment was at 4:00 p.m. It is very difficult to schedule accordingly, given the fact that the other kiddos school schedules are hectic. Izabella and Sheldon go in from 7:45 a.m. - 12:50 p.m. on Wednesday's and Alexis goes from 12:00 p.m. to 3:00 p.m. So, I have a tiny window in the morning, but given that CHOC is 30 miles away, and the earliest appointment is at 10:30 a.m. it is impossible to get there and back in time to drop off Lexie / pick up the other 2. I removed Alexis from Pre-K early, and dropped them off with Auntie. I apply EMLA, and Mommy and Isaac jump on the freeway at 2:50 p.m.
We arrive at Children's at 3:30 p.m. with some time to spare, so I just sat in the car and let Isaac sleep a bit. Didn't I get there 30 minutes early last week, too? Hmm.. maybe I should leave later! ; )
I took Isaac in his old infant carseat, and covered the top with a blanket... hoping this would be easier than trying to keep a mask on him while walking to the OPI center. Yeah, sure. He screamed. He did not like being under that blanket, and most likely did not want to be in that seat equally as much. So much for my plan!
We check in, and they take us back to our room. The treatment rooms are code locked, so it feels like you are sitting in a huge closet with a chair and a flat-screen T.V. They have to enter their "5-digit" code to enter the room. The nurse takes his BP. 148/62. Great. Just great. Lately, Isaac has been holding the back of his head whining. It is very possible that his BP has been high and it is causing him to have frequent headaches. Weight check is next. We have to leave our "closet" and travel down the hall - masked, screaming Isaac in tow. He weighed in at 9.7kg. We travel back down hall - masked is ripped off at this point. A bit later, Dr. Sam Esparza comes in. (Awesome guy..) He mentions his high BP, and is going to order a kidney ultrasound to make sure the blood flow to his remaining kidney is as it should be. If the blood flow is not within normal range, it will make his BP raise. What happens in that case, I don't know. It is his only kidney he has left and that little bad boy better be in 100% working condition.
All is well, otherwise, and he gives the green light for the transfusion. Today, he receives Vincristine only. Yeah!
Good news to report - His LOH came back NEGATIVE!!
Tumor-specific loss-of-heterozygosity (LOH) for chromosomes 1p and 16q identifies a subset of Wilms' tumor patients who have a significantly increased risk of relapse and death. LOH for these chromosomal regions can now be used as an independent prognostic factor together with disease stage to target intensity of treatment to risk of treatment failure.
Nurse comes in a bit later, with her box of tricks, and starts to work on my little man. If only this child would sit still! But, what can you expect from an 8-month-old? I took along two new Hot Wheel cars that his big brother received for Christmas. (Isaac does not play with Hot Wheels, but I thought it may be a good ploy...) I had them ready to whip out once the nurse came in with his Chemo medication. Once she got there, and got ready, I took them out. She accessed his port, (not a flinch) and he looked at the cars for 3.99 seconds and forgot about them instantly. Thank goodness the port access and transfusion only takes a matter of minutes. I don't know what I would do if he had to have that needle in there any longer. My little guy is strong! It's such a struggle to hold him in place.
Wednesday's are a mixed emotion. They are a downer because I dread taking Isaac to have him pumped full of the toxic Chemo medication, but then they are one step closer to him being cancer free. It's a lose - win situation. This last week was rough for him - Thursday and Friday were great, with Saturday - Monday being the worst. He refused to eat, and was very nauseated. His mouth was sore for a few days, as well. Hoping this week is easier on his tiny body. Cancer sucks!
I'm so happy to hear his LOH was negative! That is wonderful news! Now that nasty chemo just has to do its job. What a sweetie!
ReplyDeleteHe is so beautiful! Just thinking about everything that you guys are dealing with brings tears to my eyes. :(
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