One round of mini-BEAM down...

Hi all, I know it's been a couple of weeks since the last update - I can't begin to describe the ebbs and flows of the past two weeks. Hectic/chaotic/unsettling/nerve-wracking...all fit the past two weeks. When we left off, we were waiting on the results of the bronchoscopy and all. The pathology results from the bronch were non-diagnostic, i.e. didn't tell us squat. So, because of the fact that her coughing got so much better with the steroids, they decided to do an excisional lung biopsy. On Tuesday, July 17th, Elizabeth had her biopsy. The results came back the next day. I have mixed feelings about them...on one hand, we found out that she had the same form of Hodgkin's in her lungs. At least it hasn't mutated into some other form (trying to stay positive here folks!). On the other hand...it's still bloody cancer. Having said that, there was some concern from the doctor's that doing more chemo if she had severe pneumonitis would make things really bad on her lungs. Dr. Lasky (Chair of Pulmonary Dept at Tulane) ordered another pulmonary function test. Results? Not too good. Elizabeth has restrictive lung disease from the chemo and radiation. Dr. Lasky thinks that if we can resolve the lung issues due to lymphoma that she may have between 70-75% lung function but that's the best we can hope for - she's at 60% or so right now. Man...when things go bad it just seems to snowball. Both Dr. Lasky and Dr. Safah thought that they could manage the chemo and lung issues with the new mini-BEAM regimen somewhat safely and preserve her lungs as best as possible. Man, I hope so. Dr. Lasky says that Elizabeth can resume a halfway normal schedule and that the lungs issues won't get worse after all the treatment is over so that was a positive - he basically said the lungs would improve a little and the goal was to keep them stable for now. For sure! The only good news from the past couple of weeks was that Elizabeth was able to start mini-BEAM on Friday. It's a regimen that is typically used in higher dose form immediately prior to stem cell transplant; however, it had pretty good success as a salvage regimen for relapsed and refractory HL patients. The reason that it isn't used more often than it is has to do with the fact that it is hard to collect stem cells from patients that go through a few cycles of mini-BEAM. This wasn't a concern for us as Elizabeth has already collected her cells for transplant. I flew into New Orleans last Friday and spent the next 4 nights annoying Elizabeth. It's what I do best! ;-P She did like she always does and basically sailed through the treatments. There were some really funny moments from our time together and they usually occurred around the time that Elizabeth was getting Benadryl and pain meds. She would say some pretty funny things and we'd both share some laughs. It's weird - this whole experience. You find yourself wrapped up in potential outcomes of this whole ordeal and they drag you through so many emotions. These emotions can shift quickly or over time but it never seems to stay stable...high, low, and everywhere in between. It's the emotional roller coaster - but times two (or more!). All in all, she did really well after being in the hospital for 10 days total. She is a pretty special gal! She got to leave yesterday and go back to Prairieville and is spending time with her family and the girls right now. I know that being away from them was really hard on her - hell it's hard on me and I am not the one that has all the chemo getting pumped into my body. I miss my ladies terribly when I'm in Memphis but it's so nice to have the family support system be so close to her in New Orleans. And the staff at Tulane has gone above and beyond for her so we are so very grateful. Elizabeth will be headed back to Memphis early next week and will get to see our new house and all of the progress being made. It's really close to being ready. I can't wait for her to be able to see it. Also, Dr. Safah gave her the green light to stay here for 10 days so that she could be here for Anna's first day of 1st grade at Bailey Station. What a blessing - small things like this lift her spirits and makes her more determined to beat this illness. She can and WILL beat this - I just know it! She will head back to Tulane on Aug. 9th for a follow-up with Dr. Safah and get her schedule for the next round of chemo. After that week in the hospital (for the next round of mini-BEAM) then we will wait on pins and needles for the results of the next PET scan. If (God - please help us out on this one) this scan is good, then she will have her high-dose chemo plus stem cell transplant in September. Fingers and toes crossed while on bended knees praying our asses off! We need some good news...any good news! Hopefully, if everything goes according to plan, then she may be able to move back to Memphis sometime in late October or early November. What a glorious Thanksgiving and Christmas season that would be. Santa - I don't want a damn thing from you except for a healthy wife! Capice??? Good - glad we are on the same page! That's all for now. I will be in touch. Thanks again for all the thoughts and prayers. Love, Scott

Most recent update

Hi all - I will go more in depth later about things but here's a quick update. I know people want to know and I apologize about not writing sooner. Here's the 411: Elizabeth's PET/CT scans were sent to Tulane and the radiology group there saw noted response in the lung nodules; however, there was 1-2 spots that stayed the same size and the radiologist noted 1 new lesion - which is obviously not good given she had gone through two rounds of chemo. So we drove to Tulane this weekend to meet with Dr. Safah on Monday. She was concerned about the new lesion more so than anything else. Having said that, Elizabeth was running a mild fever and her heart rate was fairly high. She's been quite fatigued the last few days so we weren't sure exactly what was wrong but the thought of an infection had crossed my mind. Dr. Safah wanted to know exactly what was going on in the chest so she sent Elizabeth to meet with Dr. Lasky, the chair of the Pulmonary Department at Tulane. During this appointment on Tuesday, Dr. Lasky and two other doctors read her PET/CT scans and said that they did not see ANY new lesions - huh? Ok - deep breath - this could be a very good thing. Let's not get excited. Next step - another CT and bronchoscopy. Dr. Lasky said he thought that she has had a pretty good response to chemo - in his opinion. Based on the reads from Memphis and Tulane - there seemed to be a decent response to chemo - that's the good news. The bad news is that we were hoping for a complete response or a very good partial response and this didn't quite live up to that. The treatment moving forward will depend on the results of the biopsies and re-reads of the PET/CT scans. She had the CT yesterday evening and the bronchoscopy this morning. I think that all went well. Dr. Palomino (who also saw the new CT and 2-week-old PET/CT results) told me on the phone that he thinks her lymph nodes have gotten smaller in the last 2 weeks. I guess we'll get confirmation when I see the CT results in my hand. I pray that this is the case. If so, it takes her response from decent to partial which moves us closer to the auto stem cell transplant - and after we clear up any potential infection, then we may even have a very good partial response to ESHAP. Who knows at this point. It's been a roller coaster these last few months so we are hoping for the best right now. Quick update - just spoke to my mom who called as I was typing this post. Dr. Palomino spoke to Elizabeth and my mom and said that it is his opinion that based on his procedure this morning, that there is multiple things going on in her lungs - possible radiation pneumonitis, infection, and lymphoma. However, the lungs looked pretty good and that the initial tests showed inflammation but nothing malignant. That doesn't mean anything until the biopsy results come in but Dr. Palomino noted that he did not see, what he thought, were malignant tumors in her lungs. Fingers crossed but my hunch is that there are several cancerous nodules in there - hope like hell that I am wrong. Anywho, Elizabeth is in recovery and should be going home to rest in the next few hours. She is tired and needs to rest. My guess is that we will know more on Friday as the pathology results start to make their way in. Dr. Palomino said that he thinks that the cultures (for infection) will drag into Monday/Tuesday of next week so it looks like treatment might not start until the middle of next week - if there is no infection. Any infection will require antibiotics before treatment given the amount of chemo that she has had already. I will post again in the next couple of days to say how she feels. It appears possible that we may have some better news - but we are bracing for mediocre or bad - because it seems that most of the news lately has been that. Having said that, we remain very committed to fighting this and she is in extremely good spirits although she is very tired. Elizabeth is so strong - it is quite remarkable. Such a warrior. She will beat this - we know she will. In closing, I know that Trey Erwin passed away last week. We want to pass along our condolences to the Erwin family. Cancer is such devastating thing to have to go through and even worse when the loved one does not survive. It takes such a toll on a family as we are finding out first hand. On one hand, we feel so unlucky to have had this disease strike our family but it's almost impossible to not feel at least somewhat fortunate that Elizabeth still has a curable disease - even after multiple relapses, Hodgkin's can be cured - the odds go down, but it's possible. Hugged those loved ones tight! Take care everyone. More to come later this week. Much love, Scott