Emma is now beginning her third week (of 8 wk cycle) of Cytoxan. She continues to stay in remission even though she battled a cold last week for several days. That is a BLESSING!!! I thought for sure that she would relapse....but she didn't! Horray!!! She has not experienced any side effects so far from the new meds so that is yet another blessing! I think the worst thing about this, so far, is having to take her to get her blood drawn every week. Last week was interesting to say the least. I didn't want to lie to her about what we were going to do so my husband and I sat her down the night before we were going to take her and told her that we were going to have her blood work done in the morning. (This will be the third time she has had blood drawn and the last time we went she was such a big girl that we were both astonished!!) So, we figured better to be honest with her than to spring it on her once we got to the doctor's office. Well, we arrived at the doc's office and they took us back to the room. Emma sat in my lap and was doing great...............right up until they pulled out the needle to show her what they were going to do. She FREAKED OUT!!! She screamed bloody murder like someone was trying to kill her. She proceeded to beg (at the top of her lungs) to "please don't do this" kicking and flailing around like a fish out of water. I felt like mother of the year. My poor husband (who is sufficently wrapped around Emma's pinky) looked like he wanted to cry....or punch the nurse in the face....I'm not sure which one! I had to tuck her legs in between mine and hold her arms down while they stuck her with the needle. The nurse was great though, she got the vein on the first try and all Emma said was "ouch" one time and then she was fine. She watched them fill the vile with blood and never shed another tear. Afterwards, they put the giant cotton ball and tape on her arm and we were done. My husband and I had told her that she could pick anywhere she wanted to go for lunch and of course it was Zaxby's. She walked around that restaurant holding out her arm for everyone to see. She even had to rest it on my leg while she ate. It was the funniest thing ever. You would have thought that she had a limb amputated. We are scheduled to take her again tomorrow for her second round of blood work since starting the Cytoxan.....so wish me luck!!!
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Cytoxan journey
- By kbarber2007
- Posted November 17, 2008 at 1:15 pm · 5 replies
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- By NancyG
- Posted November 19, 2008 at 10:16 am
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that poor sweet pea! glad to hear you are trying cytoxan-you will hopefully get complete remission. It was never offered to us and now we still deal w/ relapses at 20 years old. I wish you the best
- By kbarber2007
- Posted November 19, 2008 at 10:59 am
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Thanks NancyG for the well wishes. You should talk to your neph about Cytoxan. It has been a God send for Emma!!!
We went back yesterday for her second round of blood work and there was a minimal amount of crying but nothing like last week. This time she chose Chick-Fil-A for lunch and sucked down an entire chocolate milkshake while holding out her arm like she was seriously injured. It was too funny!!
We will officially start her on the 1/2 tsp of pred every other day tomorrow, which means we only have one more week of pred before she will be completely off it.......for the first time since Jan of this year.....YEAH!!! God is good!!!
- By hope4health
- Posted November 20, 2008 at 9:52 am
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Emma did everything I wish I could do! Kids don't bottle it up like we adults! That was probably very cathartic for her, although so tough to watch as parents. I wish you and Emma the best...
- By satishmk
- Posted November 21, 2008 at 1:36 pm
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My daughter is on Prograf and we have to get her blood test done once a month. She is 3 1/2 yrs old and goes through same trauma when we take her for blood work. When we visited the lab last time, there was a 10-12 yr old kid whos mother suggested that we ask the doctor for ointment to numb the skin before blood work. Apparently you don't feel a thing once you apply the ointment. It is just that the ointment takes about 15 mins to kick in and lasts only for an hour. So timing is essential. We are planning to ask our doctor about this.
- By yippyskippy
- Posted November 21, 2008 at 9:59 pm
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My friend worked in the nephrology clinic of a hospital so when my child was diagnosed with MCNS, she immediately suggested that we always use Emla cream prior to IVs, blood draws, etc. for numbing. There are also generics available and your neph can prescribe it and you can administer it an hour or so ahead (topical cream). My son has used this and he actually didn't even know when they stuck him with an IV needle until he turned around and was surprised to see a "tube" in his arm.
The catch is that you will likely have to get and use the cream yourself as most labs and clinics don't keep it on hand (even though its quite cheap). Even in the local childrens' hospital, we had to specifically ask for it EVERY time they needed to use a needle as they didn't offer it up themselves.
Hope that helps!
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