Hi and welcome to the board you never want to join.? Sorry you had to find your way here; and this diagnosis is so new to you your head must be spinning.? Your emotions are totally understandable and we've all cycled through some variation of how you feel.
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My daughter was diagnosed 7/30/10 with high risk Pre B ALL and will be done with treatment 11/30/12.? She was almost 12 at dx, but has Down syndrome and is not near her chronological age cognitively.? Every child reacts differently, but the first four weeks were absolutely miserable for Lauren.? I'd say the first four weeks were miserable, the next two weeks were bad, and then she started feeling better and the bad times were not as long lived.? They were just now and then.
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I seriously wondered if it was worth treating her the first couple weeks because she was so miserable.? She was in pain, had mouth sores, sores on her rectum, lost control of her bladder and bowels, her bones ached and she screamed every time she sat on the toilet.? Between the meds, the IV fluids, the medication for high blood pressure and to help her kidneys and liver she was a MESS.? Every time she walked to the bathroom she moaned and cried.? She was zoned out in her own little world and it was awful.? I felt like I had "lost" her and didn't know if she'd ever come back.? It felt like her sparkly little soul had died.? But the good news is, she came back!? Her old sparkly little self started to come back about 4 weeks into treatment.? We also were able to take her off the meds for blood pressure and kidney and liver after about 4 weeks.? There were still some rough times, but not as consistently bad.? After that first month we were up and down, had times she felt good enough to go out for a movie and to restaurants, etc.? She missed all but a few days of school that entire school year, but I don't think any time during treatment was as bad for her as the beginning.?
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I have never heard that a 2 year old can't be in pain or nauseated.? And quite frankly, I don't believe it and would tell your team that.? I'm sure there are other people on this board who have young children and I'll be surprised if they say their child didn't experience pain.? Think about the different cries babies and toddlers have. With my 2 year old grandson I can tell if his cry means he is just trying to get attention, he is tired, or he is in pain.? We used oxycodone in the first couple months for pain and then haven't needed it much since.? We also used zofran to control nausea and vomiting.? We still have to use zofran and bendadryl when she has spinals or she gags and retches for hours afterwards.?
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Best of luck to you.? There is also a Facebook group called A.L.L. Moms that is a wealth of information and allows for quicker replies.? You need to be a FB friend of someone in the group to join.? Email me at robbieharding@aol.com if you want to join the group.
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Robbie and Lauren
Source: http://community.lls.org/thread/16800
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