Layla Grace Children's Cancer Research Foundation

Wed December 23, 2009 8:30 AM

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Layla & I are headed to the hospital for a checkup & transfusion. She’ll go 3x a week for a few weeks. We’re armed with movies & stickers

Wed December 23, 2009 8:45 AM

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Layla knows the way to the hospital. We’re halfway there and she is already crying, telling me to take her back home :-(

Wed December 23, 2009 9:41 AM

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Layla threw up right when we pulled into the parking garage. I pray we get in and out of the clinic quickly!

Wed December 23, 2009 10:57 AM

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Layla is doing excellent & does NOT need any transfusions today! PTL! Her ANC is holding steady too! We’re waiting to make our next appt.

Wed December 23, 2009 1:34 PM

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We’re back home and Layla ate 3 small bites of food in one sitting without throwing up! She’s getting better every day!

Wed December 23, 2009 1:36 AM

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She goes back to the dr Saturday to check her counts. Please pray she won’t need a blood/platelet transfusion & we’ll be in & out quickly!

Wed December 23, 2009 2:18 PM

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Hi new followers! Welcome and thank you for all the prayers and RT’s! You can read more about Layla at http://laylagrace.org

Thurs December 24, 2009 8:43 PM

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Just put out milk and cookies for Santa. His milk is extra yummy this year. Layla drank some of it!

Fri December 25, 2009 10:46 AM

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Fri December 25, 2009 8:21 PM

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Layla had a fabulous day opening all her gifts and playing with her sisters. After a quick dressing change, she’s off to bed!

Sat December 26, 2009 9:02 AM

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Headed to TCH for labwork. I’m behind a funeral precession & Layla is screaming “take me home”. Not how I planned to spend a Saturday.

Sat December 26, 2009 10:37 AM

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Layla’s counts look great! No transfusions today!! Praise God!

Sat December 26, 2009 10:53 AM

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Layla has a sippy cup of apple juice but she wants my tea. She’s fake coughing and saying “I’m choking. I need tea”

Sun December 27, 2009 2:09 PM

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Layla was great in church this morning and ate a wonderful lunch. It’s shaping up to be a fabulous day! Thanks for all the prayer!

Mon December 28, 2009 8:47 AM

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Layla woke up this morning with a bloody nose & mouth. We’re headed to TCH for a check-up and transfusion.

Mon December 28, 2009 9:32 AM

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If you’re in the Houston area, pls come out for Layla’s blood drive today from 1-7pm and donate to save a life!

Mon December 28, 2009 9:33 AM

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Drive is being held @ Homewood Suites @ 13110 Wortham Center Dr, Houston, TX 77065. Regardless of what blood type you are, come on out!!

Mon December 28, 2009 9:35 AM

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PM me if you’d like more details or to make an appt. Layla’s last blood drive had a 3 hour wait time, so appts are encouraged!

Mon December 28, 2009 9:57 AM

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Mon December 28, 2009 10:14 AM

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Layla’s platelet count is 16. Normal is 150-400. She’ll get a platelet transfusion today, but doesn’t need red blood cells. PTL!

Mon December 28, 2009 10:15 AM

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Dr. K is decreasing her Methadone dose, and b/c she’s eating more every day, he would like her off of TPN by the end of this week!

Mon December 28, 2009 10:17 AM

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Once she is consuming 65% of her caloric needs on her own, she’ll be taken off TPN (IV nutrients)

Mon December 28, 2009 9:58 PM

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Having a heck of a time getting Miss Layla to sleep tonight. She has a lot of energy!

Tues December 31, 2009 8:32 AM

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Headed to TCH for counts, possible transfusions & hopefully we’ll be told Layla can stop getting TPN at night. She’s eating better everyday!

Tues December 31, 2009 9:06 AM

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Layla is oddly ok with going to TCH today. Instead of her normal pleading to go back home, she’s singing along to George Strait :-)

Tues December 31, 2009 10:36 AM

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The family in the room next to us drives in 3x a week from Dallas. So thankful we live in Houston and are close to the hospital!

Tues December 31, 2009 10:46 AM

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Layla needs a red blood cell transfusion. She’ll get pre-meds for an hour then we’ll start the 3 hour transfusion.

Tues December 31, 2009 10:51 AM

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Dr. K just told me she needs platelets too. That adds another 1.5 hours. Layla is already crying, asking to go bye bye.

Tues December 31, 2009 11:34 AM

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Layla just had Hydrocortisone, Benadryl and Tylenol. Now she’s getting fluids and we’re waiting for the blood to get here.

Tues December 31, 2009 12:25 PM

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I just asked Layla if she needed anything. Her response… “Yeah, an Icee and to go home” LOL

Tues December 31, 2009 2:35 PM

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Blood is done. Waiting on platelets now. It’s been a long day!

Tues December 31, 2009 3:03 PM

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Sat January 2, 2010 10:44 AM

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Layla had a great New Year’s! We are loving our time at home with her! We’re heading out to run errands. Keep checking in, pics will follow!

Sat January 2, 2010 11:29 AM

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Sat January 2, 2010 12:00 PM

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Nobody has guessed right yet. Anyone else want to guess where we are and what we’re doing there?

Sat January 2, 2010 12:27 PM

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Most of u guessed bridal store. We were @ Babies R Us 4 new blankets. I had 2 throw most of hers away Chemo & puke do bad things 2 blankets

Sat January 2, 2010 4:27 PM

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Sat January 2, 2010 6:59 PM

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Sat January 2, 2010 7:32 PM

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Sun January 3, 2010 8:58 AM

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DJ Layla Grace brought the house down last night.

Mon January 4, 2010 9:04 AM

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Heading to TCH for Layla’s check-up. Please pray she doesn’t need a blood or platelet transfusion.

Mon January 4, 2010 9:36 AM

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Layla wanted Chick-Fil-A. I stopped even though we’re running late. I was the 100th customer & got $7 off! A great start to the week!!

Mon January 4, 2010 11:12 AM

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No transfusions today!! Praise God!

Tues January 5, 2010 11:42 AM

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Tues January 5, 2010 6:47 PM

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Layla is eating fist fulls of butter and I’m not gonna stop her. Put those pounds on girl!

Wed January 6, 2010 11:45 AM

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Wed January 6, 2010 8:32 PM

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Layla is just now going to bed. Way past her bedtime but she was having a blast playing with her sisters & snacking. Yeah!!

Wed January 6, 2010 8:32 PM

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Dr appt and possible transfusions tomorrow. Please pray for good lab results!

Thurs January 7, 2010 10:58 AM

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At the Dr with Layla and her Auntie (my sister). Praying for NO transfusions today!

Thurs January 7, 2010 12:12 PM

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Layla will have a platelet transfusion today. She’s doing really well & Dr. S said she might b released back to the cancer center next week.

Thurs January 7, 2010 12:14 PM

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She’s been considered a transplant patient for the past 10 weeks & being sent back to the cancer center means she’ll continue on to the…

Thurs January 7, 2010 12:15 PM

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…next phase of treatment – maintenance. 6 months of Accutane and immunotherapy injections.

Thurs January 7, 2010 4:30 PM

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Thurs January 7, 2010 4:32 PM

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Dr. S said it was ok for her to eat spoonfuls of butter & actually a very common request. Their bodies crave the salt and fat.

Fri January 8, 2010 11:20 AM

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Playing hide and seek

Sat January 9, 2010 6:48 PM

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Sat January 9, 2010 6:50 PM

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Sun January 10, 2010

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Mon January 11, 2010 9:10 AM

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Another Monday, another day at the hospital. Please pray for good lab results & no transfusions.

Mon January 11, 2010 9:16 AM

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Layla has scans all next week. Pls start praying now that there is NO evidence of cancer!! Pls RT & help her get as much prayer as possible!

Mon January 11, 2010 10:36 AM

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They were out of isolation rooms so they put us in an actual patient room on the inpatient side. Layla lost her mind when we walked in.

Mon January 11, 2010 10:37 AM

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I must admit it made my stomach hurt walking in this room as well. The only plus is that we have our own rocking chair & private bathroom.

Mon January 11, 2010 10:38 AM

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In other GREAT news, Layla has gained 6 oz since last Thursday!! Praise God!!! She is eating better every day! She weighs in at 22lbs even!!

Mon January 11, 2010 12:36 PM

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Mon January 11, 2010 12:40 PM

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Layla’s counts are holding steady, meaning her body is starting to function properly on it’s own. No transfusions & we’re going home :-)

Mon January 11, 2010 12:42 PM

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We were told to expect 3 transfusions a week after BMT. She has only had one a week so she’s really doing well. Prayers are being heard!!

Thurs January 14, 2010 10:42 AM

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Fri January 15, 2010 8:41 AM

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Hospital bound. Hopefully Layla’s last visit @ BMT clinic. We’re eager to b back @ the cancer center & start the next phase of treatment!

Fri January 15, 2010 8:44 AM

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Pls continue to pray for her scans next week. We have faith they will reflect NO evidence of disease! What a glorious day that will be!!

Fri January 15, 2010 10:35 AM

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Layla’s labs were just drawn. Now we wait for the results 2 see if her counts r high enough 2 avoid transfusions. Praying we’re done soon!

Fri January 15, 2010 10:36 AM

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Layla has cried and fussed since we got here. Usually she calms down fairly quickly but today she’s just not at all interested in being here

Fri January 15, 2010 11:13 AM

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Counts look good! No transfusions! Dr. S is taking a sample of her saliva b/c it looks like she might have a yeast infection in her mouth.

Fri January 15, 2010 11:13 AM

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That won’t change any treatment plans, I’ll just have to swab her mouth with Nystatin cream until the infection is gone.

Fri January 15, 2010 11:16 AM

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Alternatively, the bumps in her mouth could be scars from the mucositis or new taste buds coming in that are just enlarged.

Fri January 15, 2010 11:16 AM

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She will get an entire new set of taste buds over the next few months. Crazy!

Mon January 18, 2010 8:07 AM

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Scans week!! Today is GFR to test Layla’s kidney function. It was decreased after the last GFR and she’s had high toxicity chemo since then

Mon January 18, 2010 8:09 AM

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She only has 1 functioning kidney so please please pray it is not too badly damaged from the chemo.

Mon January 18, 2010 2:18 PM

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Done with GFR. Now waiting to see Dr. R. Layla is doing really well & has been very patient today.

Mon January 18, 2010 2:23 PM

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Mon January 18, 2010 3:11 PM

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Just got Layla’s road map for the next 6 months. In and out of the hospital a lot. And massive amounts of accutane. If anyone has any…

Mon January 18, 2010 3:12 PM

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…ideas as to how to get a 2 y/o to swallow a horse pill whole, please share them!!

Mon January 18, 2010 4:07 PM

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Thanks for all the suggestions. We can’t crush it. It has to be swallowed whole with something fatty (it’s fat soluble). Dr. R said push…

Mon January 18, 2010 4:08 PM

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…it down her throat as far as we can then rub her throat until she swallows. There HAS to be an easier way! Lol!

Tues January 19, 2010 9:24 AM

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Just arrived at hospital for bone scan. Please keep Layla in your prayers!!

Tues January 19, 2010 11:45 AM

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Layla’s GFR is back & not what we were hoping for. Her 1 kidney is functioning @ 59%. She’ll have a consult w/ the renal team soon.

Tues January 19, 2010 11:47 AM

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There is a chance her kidney could recover on it’s own, or she might need meds to help. Dialysis or transplant isn’t a concern yet.

Wed January 20, 2010 11:30 AM

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2day Layla is having an MIBG injection. She’ll have the actual scan tomorrow. MIBG scan will light up any NB in her body. We hope to c NONE

Wed January 20, 2010 11:31 AM

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Please pray and RT that these scans will prove Layla is cancer free!! There is power in prayer!!

Thurs January 21, 2010 8:51 AM

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Today is MIBG and CT scans. These are the big tests we’re anxious to get results from. PLEASE pray for a cancer free Layla!!

Thurs January 21, 2010 10:28 AM

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Thurs January 21, 2010 10:32 AM

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Thurs January 21, 2010 12:33 PM

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Layla just finished her CT scan. Waiting for anesthesiologist to come give her Propofal so she can start her MIBG scan.

Thurs January 21, 2010 5:50 PM

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Scans are finished. Layla has an appt tomorrow but I don’t think we’ll get any results. Maybe the bone scan…please pray results are good!!

Thurs January 21, 2010 8:49 PM

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Layla stood up on her own tonight! Her body is getting stronger every day. I have faith God has healed her & her little body is thriving!!

Fri January 22, 2010 10:49 AM

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Lab work today. Praying for no transfusions and hoping to hear some good news.

Fri January 22, 2010 12:06 PM

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A few results are in and I’m in Dr. R’s office waiting for her. This all feels very formal. I hope this is how she gives good news.

Fri January 22, 2010 12:08 PM

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So nervous I’m shaking. Layla must sense it b/c she just threw up all over the floor

Fri January 22, 2010 5:20 PM

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You might want to sit down.

Fri January 22, 2010 5:22 PM

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Layla has new tumors and the doctors have given her two months. Thank you for all of your prayers. Please continue to pray for a miracle.

Fri January 22, 2010 5:32 PM

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We are going to be trying a daily oral chemo in hopes that it will slow the tumor growth. The new tumor is invading her 1 good kidney.

Fri January 22, 2010 5:40 PM

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Layla’s kidneys have taken a huge hit so she isn’t eligible for many treatment options. Unless her kidney function recovers, the oral…

Fri January 22, 2010 5:42 PM

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…chemo is our only option. IF it does recover, there r a few radiation options we have. Regardless, these tumors…

Fri January 22, 2010 5:42 PM

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…are aggressive and growing rapidly. Our only option now is to try to slow them down so we have more time with sweet Layla.

Fri January 22, 2010 5:43 PM

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We are still expecting God to give us a miracle, so please continue to pray for Layla and share her story with others.

Fri January 22, 2010 5:53 PM

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It’s hard to believe that such a happy energetic n little girl is so sick. Right now layla is happy and playing Play-Doh with her sisters.

Fri January 22, 2010 8:33 PM

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Just got the girls in bed. Watching Layla play with her sisters tonight it was all I could do 2 hold back tears. She looks stronger every…

Fri January 22, 2010 8:34 PM

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…day. You’d never know cancer was invading her body. Going tomorrow to pick up her oral chemo. PRAYING it will slow down the tumor growth

Sat January 23, 2010 9:29 AM

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Woke up this morning feeling hungover. Praying yesterday was a bad dream. The puffy eyes & foggy contacts confirm it was not.

Sat January 23, 2010 9:31 AM

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Preparing to drive across town to pick up Layla’s oral poison. She is eating, laughing & in a great mood today. This kid loves granola!

Sat January 23, 2010

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Sat January 23, 2010 12:14 PM

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Cyclophosphamide is expensive and in case you were wondering, no, there is no generic form :-/