Tuesday, June 12, 2012

2nd round of ESHAP

Hello all - wanted to drop a line (or many) and update everyone. Elizabeth recently finished her 2nd round of ESHAP. As with the last one in May, she did really well for most of the week. The people at Tulane were great and she sailed through the first 4-5 days (all of treatment). I had to leave on Wednesday morning and come back to work but I checked in constantly. She ate well and got a decent amount of rest in while the girls bounced around from both grandparents' houses to New Orleans. We had a fantastic Tuesday night dinner at Lucy's in New Orleans. Lyla kept us entertained the entire time as she was dancing and cutting up for most of the night.

I made it back down to New Orleans on Saturday afternoon. Elizabeth was still feeling pretty good at this point - the only thing that really seemed to be bothering her was this nagging cold that she can't shake. Obviously, her immune system is severely compromised right now so that makes matters that much more difficult. The Ara-C (cytarabine) hadn't hit her yet because she got an extra dose of steroids on Friday. All that did was delay the inevitable as Sunday was really tough on her. We went to Tulane to get her blood work done and let her get her first shot of Neupogen. It comes in 2 small syringes (a 480 and 300 microgram dose) and she has to get this drug every day now until the stem cell harvest later this week. This is essentially the same thing as Neulasta so she has been quite "achy" and sensitive to touch the last few days. We are trying to manage as best as we can right now but it's tough. She slept most of the day on Sunday after we went back to my parent's house. I know that she has been semi-uncomfortable because the girls are around - she wants to spend time with them and feels guilty when she doesn't, yet she really wants to rest because she feels like crap. Really bad spot to be in. Fortunately, Anna has been soooo good during this that she completely understands and thankfully Lyla doesn't really know any different. Having said that, if Lyla sees Elizabeth, she wants to be with mommy so it's a little tougher than just going in another room.

Monday seemed to be a little better but still a day of rest. I had to leave to come back to work - although it kills me that I can't be there to help out. I just can't afford to lose my job - not now! Insurance is greatly needed at this point in time! Ha. Elizabeth is headed back to New Orleans today to stay at my sister's place. Grace has been a cleaning machine - trying to make sure that there are no issues for Elizabeth. She's fantastic! Thanks a ton, Grace! I think getting away for a few days while still feeling yucky will be good for her. Hopefully she can tackle this cold a little better and get back to feeling semi-normal. They are set to do some more blood work tomorrow and estimate the date of stem cell harvest. Typically, the harvest is done on day 14ish (day 1 was last Monday - first day of 2nd round of ESHAP). I hope that she can actually do hers on day 12 or so. I am driving back to New Orleans on Friday and it would be great if I could bring the girls back to Memphis on Sunday or Monday. I know that they are ready to be home - especially because July is going to be spent in Louisiana as well. I'll know a bit more about everything tomorrow and will try and update everyone then - I just need to know what her blood counts are. If she can get her white blood cell counts above a 1.2 then she'll be ready.

The stem cell harvest is a procedure that take blood stem cells (cells that haven't matured to white or red blood cells yet) from the patient through a process called apheresis. Basically, the blood is taken from a catheter (hers will be a catheter in the femoral artery) and passed through a machine. During this process, the blood is spun down and the stem cells are filtered off. The blood is re-infused back into the catheter and the stem cells are counted (through a process called flow cytometry) and frozen. She needs to have approximately 4-5 million cells per kilogram of body weight. She needs at least 2.5 million to proceed with the transplant so the collection may take more than 1 day. Hopefully not but it's tougher to collect so many in the first day. As usual - fingers crossed.

After the stem cell harvest, we should be able to come back to Memphis for 2-3 weeks. She will need to have a CT scan done to ensure that the chemo has killed her cancerous tumors and if all goes well, we will then proceed with the high-dose chemotherapy followed by stem cell transplant. The high-dose therapy is given in the hospital and usually takes 5-7 days to infuse. After day 10 or so, her immune system will be wiped out. Once that happens, they will re-inject her stem cells back into her and they will make their way back to the bone marrow and graft. Then she will have to stay in the hospital until her counts get sufficient to leave. This process usually takes 2 weeks after the chemo is done but hopefully my little warrior will make it out sooner. She has kicked this things' ass already so I think she may do very well during the transplant. Because this is an auto transplant (her own cells) then her time away from the kids won't be the 100 days like we said earlier. I think that there was some confusion about that and after talking to Dr. Pallera I think it should be much less - like 2-3 weeks after we get back to Memphis (6 weeks or so total). That was a relief to her.

All in all, she is doing great given what she is going through. Our parents and family members have been so very helpful that we could never say thank you enough. They have made our life much better than it could have been otherwise. I know that we appreciate it very much. We still have been overwhelmed by the support. We've got one more thing that we may need some help with though. Because of the nature of the high-dose chemo treatment and subsequent transplant, there may be a need for blood transfusions. We are going to try and organize a blood drive for Elizabeth. I am almost certain that she is A+ blood type. I'll have more about this very soon. I still need to understand this a bit better so if anyone has any info about how to go about doing a blood drive, please let me know. Thanks.

That's all for now. I'll keep everyone posted.

Love y'all,

Scott


3 comments:

  1. Thanks for the update Scott. Best to Beth - she is tough! Sorry about Mitzi - you are in my prayers. Love keeping up with you guys on the blog.

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  2. Scott,

    Very thorough update Dr Noel! Much appreciated! I love you both, and I'm praying for you and your little family! May strength and peace be with you all! Kiss Beth for me when you see her next!

    - Megan

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  3. my thoughts are with you <3 much love

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