Wow! so I would say this past week was just about as nerve racking and busy as the previous two weeks. I swear it feels like a month has passed since I posted last. Well, Jack ended up having a horrible horrible rash on his legs, it got so bad that we had to take him to the ER at the Children's Hospital in Peoria. I was NOT going to deal with the ER here in town again. We had found out since our trip, Jack had blood in his urine, something that the ER failed to tell us and something they let us go home with. We were certain he had HSP, which is a rare autoimmune blood disorder. It was something I mentioned on day 1 at the ER and was dismissed in a hurry. HSP can only be serious if it attacks the kidneys, which blood in the urine is the first indication. So I was livid when I found out about that and nobody bothered to tell us. Anyhow, the second we went in the hospital, they said immediately upon arrival, he had HSP. Before blood work or anything, just based on his symptoms, they were certain of it and would do tests to confirm. They gave him anti itch medicine because at this point, his legs were so swollen and the rash was ALL over and he was in pain. They took care of his needs right away. As they did the blood work and was waiting for the urine cultures to come back, they felt like it was serious enough to make him stay all night. They wanted to observe him. Oh, and I had taken him back to prompt care on Saturday because he had another different rash and his throat looked horrid, so in the middle of all of this he got strep throat. Normally, HSP can be brought on by strep, but Jack just happened to GET strep while having HSP...the doctors told Zach "lucky you". So that was last Sunday. Zach had to reschedule his surgery for Monday because he was overnight with Jack. Monday afternoon, they released Jack with the official diagnosis of HSP and sent him home with pain meds and anti-itch medicine as his legs were so bad that benadryl didn't even cover it :( That night was horrible. He was so uncomfortable. He cried all night :(
So Wednesday (2 days later), he finally felt comfortable enough to go back to school. And that same day Zach had surgery at 6 am and Lucy had clinic, plus it was Halloween. Wow! Talk about a packed day. Zach's mom came in to take him to surgery, and I got the kids ready for school and clinic. That was a looong morning. Lucy was fighting me on everything. She has had some real discipline issues lately. It got so bad that she was hitting me and calling me names. I gave her several warnings, and finally had to pull out the big guns. I told her I would take away her Halloween costume if she didn't stop, she said she didn't care and continued to battle me on going to clinic. So, I took it away. Then I told her she was not going to get to go Trick or Treating. Again, she was still hitting and said she didn't care. All of this over wearing pants. She continued to hit and yell, so I dressed her and finally put her in the car. We dropped Jack at school and headed to Peoria for clinic. She calmed down finally once we got there, and don't think she didn't let all of the nurses know that mommy threw her costume in the garbage! hahaha We were over 2 hours late to clinic due to her escapades. So she ended up missing school. Zach was home from surgery once we got home from clinic. Doc said that he thought things went well and we would have to wait a week to see. That night, trick or treating came.....guess who didn't get to go??? yep! I stuck to my guns. It was hard, but she had been so deviant, I had to make a lasting punishment stick. The first thing Dr Pui told us when we were admitted is that she WOULD get better and that if we stopped disciplining, we would have a monster on our hands. And Lucy, by nature, was already a stubborn little girl and full of mischief, the cancer just added fuel to that fire. It was the hardest thing to walk out the door without her. But I have to say, not only did Jack and I get some much needed one/one "normal" time, she learned her lesson. So much so that we had a radio interview the next day, and when asked about Halloween, she said she didn't get to go trick or treating because she made bad choices!! lol!! I'm sure the audience was like "what a horrible mother not letting the cancer kid go trick or treating". But that is just the thing..she has cancer, she's not immune to discipline. I had someone comment on her Team Lucy page that I would "regret not letting her go if anything were to happen to her". I had to ban that person. Sorry, but I'm the parent, and first, I don't need advice on how to raise my child, and second, why would you even say anything about "if something happens". That something could be anything in life, regardless of the cancer, but we don't stop disciplining our children over it. It was trick or treating, I didn't lock her in a room with no food! And no negative posts are allowed that encourage that type of thinking anyhow "what ifs" are NOT allowed.
That was last week, and this starts a new week of chaos. Unfortunately, Zach went back to the doctor and he is NOT healing the way they wanted. He is still having saliva come out the side of his cheek (on the outside, as in running down his neck). So the doctor told him to sit still for the next week and do NOTHING! Its driving him crazy, but he's also scared about what his options are for a 3rd surgery. It has a great risk of causing facial paralysis. We really hope we can try something else, as our luck isn't the best, and we would just assume NOT have to go there. We go back to the doc tomorrow for him, so we shall see what it brings. Jack seems to be completely better, and Lucy is picking fights, so I assume she is healthy! lol As healthy as a cancer kid can be anyhow.
So to sum this up....I'm so tired of all the medical acronyms we get to add to our list. HSP was definitely NOT what we were looking forward to, but its better than Cancer.
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