Friday, June 22, 2012
6/22 (Stem cell harvest, Anniversary, etc)
Lots going on since the last post but the BEST thing is that my family made it back to Memphis. I can't begin to tell you how awesome it is to have my girls back in town. As nice as it is to have some quiet time, having them gone for 3 weeks isn't all that fun.
When we last connected, I described the chemo and how Elizabeth was feeling. She went in for her blood work on Wednesday the 13th. Unfortunately, her blood counts were nowhere near where they needed to be in order to harvest stem cells. Same thing on Thursday. At that point, Tulane told her to take the weekend off and they would re-check things on Monday. I couldn't wait for Friday to come because I was going to drive back to Louisiana to see everyone. I lied to Elizabeth and Anna and told them I was driving down early Saturday morning. I felt like a really excited kid on Christmas Eve while I was driving home - I couldn't wait to see them. Obviously I'd see Elizabeth on Friday night - but I would have to wait to see those sweet little angels of mine. I woke up Elizabeth at midnight on Friday and it was pretty cool to see the look in her eyes as she woke up and realized that I had drove down early. Anna's reaction was great the next morning as well - she hugged me as tight as ever and told me how much she loved me. Awesome moments in my life and they are forever stored in the vault.
We had a great weekend - got to spend time with both families and we had dinner with my grandmother and uncle on Saturday. Father's Day was fairly uneventful but it just didn't matter as I spent the day with my family. That's all I wanted (well, that and I got to watch the US Open without being pestered too much!!!). Love that the US Open is always on Father's Day! I get uninterrupted golf every year in one of the three biggest tournaments (yes, I know that the PGA Championship is the other major). I was going to leave Louisiana at 4am on Monday morning so that I could get back to work but my boss texted me on Sunday night to tell me to stay for a few days if I needed to because we were slow at the office. That was a blessing - as I explain Monday to you!
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| The apheresis contraption - or a fancy plumbing science project! Your call |
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| Hooked up and ready to get some cells harvested! |
Dr. Safah wanted her to stay two more days in New Orleans to monitor the femoral line site but Elizabeth wanted to get home. So, we left - of course. Ha. We're bad! Okay, not bad but disobedient! We're trying but it really is difficult given that we live 6 hours away and she had been gone for 3 weeks. It was time! We made a compromise though - we scheduled an appointment to see Dr. Pallera that Tuesday so he could do her blood work and look at the incision site. There are serious risks with the femoral line - infection and bleeding are the two main issues. But thankfully nothing was wrong and she made the trip just fine! Here's another tribute to her strong bone marrow - her WBC counts was double on Tuesday what it was on Monday suggesting that she could have collected another 20+ million stem cells per kg. Dr. Pallera was shocked. Melissa at Tulane (the transplant coordinator) said she thinks that Elizabeth may have set a record for amount of cells collected in < 3 hours. I knew she kicked ass and she just keeps proving it over and over again. So proud!
We talked to Dr. Pallera for about 30 minutes. We talked about her nagging cold (that is thankfully getting a little better), her overall health, the transplant and chemo associated with it, her counts, the stem cell collection, and her upcoming scan. He seemed very excited about how strong her marrow was and stated that he couldn't recall someone with such strong marrow after so much chemo within the last year. We felt pretty positive coming out of the appointment.
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| Anniversary dinner. Eight years - and she still puts up with me! |
It's now Friday and she is doing wonderful. She is back at work - in her element and doing her thing! As usual. I say it all the time but for all of her clients that read this - she absolutely LOVES you guys! She loves working and spending time with you all. I am glad that she loves it so much - it is so therapeutic. Thanks for keeping her in good spirits. Hopefully she'll be able to work for a few weeks before the transplant. The next big hurdle is Monday - her PET/CT scan. I see what all the cancer forums mean when they say "scanxiety"! I'm a nervous wreck. We need some good news on Monday. If she is all clean (like we are praying for) then it's a full-go for the transplant next month. It is very important to have a clean scan in terms of long-term outcomes! Elizabeth is going to beat this - this is just the next step on the journey! Prayers needed for great news on Monday.
In closing, I still miss my little Mitzi! She was such a great dog. This past week, one of our best friends, Tiffany, lost her dog. Coupled with the loss of her dad earlier this year, we can't send out enough prayers for you honey! We love you very much and hope that the rest of 2012 can bring some happiness to you. We also are praying for Aspen and Jolynn as both are hurting. We love you guys! We love our pets, too, and know how they can be family - and it hurts so much to lose them.
Thanks for all the continued support. We appreciate it so much. Please leave a comment or email me at scott.p.noel@gmail.com if you need to ask anything.
Much love,
Scott
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
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
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