While on chemotherapy, and for 3 months after, she is considered "immune compromised" which means she is more likely to catch an illness, such as a virus, bacteria and opportunistic infection. If at any point she gets a fever of 100 degrees, we are to immediately go to the ER at Brenner's. Any infection is dangerous, but a blood infection is even more life threatening. How do you explain any of this to a three year old?
She is receiving two different types of medicines: Dactinomycin (A) and Vincristine (V) over the course of 19 weeks. It is "Regimen EE-4A". Toward the end of the treatment, she receives a slightly higher dose of the Vincristine (V*). The schedule is below. We have completed week 0, 1 and 2:
Week
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0
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1
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2
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3
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4
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5
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6
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7
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8
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9
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10
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11
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12
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13
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14
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15
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16
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17
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18
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A
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A
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A
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A
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A
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A
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A
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V
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V
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V
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V
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V
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V
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V
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V
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V
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V
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V*
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V*
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V*
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There is a long list of side effects with each drug. Here is the short list:
Vincristine (side effects peak 3-4 days after treatment)
- Hair loss
- Temporary nerve problems (affects feelings in toes, fingers or the way you walk)
- Constipation
- Liver damage (Rare)
- Nausea and vomiting
- Reduction in the ability of the bone marrow to produce blood cells, causing an increased chance of infection, bleeding, bruising, and tiredness
- Hair loss
On the tumor results I posted yesterday, there may have been some confusion. It wasn't about finding out if the tumor was genetically linked. (They don't believe it was.) Scientists are starting to think the DNA of the actual tumor is more important than the Stage. With Wilm's, they are finding kids with a tumor that's DNA has a loss of heterozygosity [LOH] at chromosomes 1p and 16q are relapsing more after treatment than other kids. SO, if E's tumor had this LOH indication, they would have given her another medication and extended her treatment to 25 weeks instead of 19 weeks. Fortunately it did not. A HUGE sigh of relief was heard through the hospital when the doctor told us this.
We have a light at the end of the tunnel and we are focusing very hard on it. Based on this news, we should be through treatment and back up to speed in time for her 4th birthday. What a great way to celebrate!!
and one heck of a party we will have! Love to all of you!
ReplyDeleteA sigh heard all across the southeast, for sure! Lots of love and prayers coming your way.
ReplyDeleteWe'll have to have a big blow out party for her in celebration of all that she will have conquered! :)
ReplyDeletePraying for you guys! If you ever need a place to hang out nearby, or if one of you needs to catch a few hours of sleep, you are welcome at our place anytime (one block away from the hospital).
ReplyDelete