Month: June 2014

As crazy as this journey has been, and trying to myself and my husband – physically, mentally, emotionally..I don’t know if I would trade a minute of it for anything. As crazy as that sounds, there are moments like the one I am going to share from this morning that almost makes me wonder if we’re here on this journey together for a reason. I sometimes think that maybe he’s here to teach me to slow down, to enjoy life, to love a little harder and breathe a little more. You can’t tell me these amazing creatures were put here just because..I know he has a deep calling with that look in his eyes. So anyway, here we go. In the morning Bentley usually makes me drag him out of bed to go eat and potty. He’s pretty much always been like this, except for the couple weeks he was on steroids and then he’d run me over to get to food haha. But this am he came down and went right outside, and usually he’ll just pee and then want back in. Today, he went out and wandered around with his sisters a minute so I went back in to fix their breakfast.  All of a sudden I hear barking (thought he was telling me to let him in), so I go look – and he’s sitting up on the hill in the trees just sniffing and frolicking. So I said, “you’re a silly boy, are you having fun out there?” Turned back around and went back inside to finish breakfast and clean up. 3 seconds later barks again, same routine, 3 times we do this and I’m sure at this point my neighbors are annoyed. So finally I go outside and see if there’s something up there he’s seeing or something bothering him..I sit down next to him, he looks at me, licks me from chin to forehead with a big goofy grin..and then continues to look around and watch the birds. We sat like this for 15 minutes, side by side, my arm around him.  This was him, and the world, telling me that dishes weren’t important – but this moment here with him – will never get back. God he is so right!! From a control freak, OCD, Anal, schedule and routine obsessed woman..it is so often impossible for me to ‘live in the moment’. But boy is this cancer monster ever a reason to do so..and he is showing me everyday what truly matters in life. It’s moment’s like these that make me wonder if we’re on this crazy caner ride for a greater purpose, and if in fact he was sent to me for something more than belly rubs and a shoulder to cry on. <3

Love and kisses to all!

Kate and Bentley

xo

Seriously, when can we catch a F****** break??!? WTF?!

Sorry it has taken me so long to update, we’ve been super busy! But we did actually rescan Bentley’s heart and lungs since returning from PA and now we’re even more in the dark and confused than before. Good news is that his heart seems to be 100% normal again which is fantastic!!! But, Xrays show a 5cm mass in his lungs. A mass, that was not AT ALL visible when we did chest scans last month when we were in PA. :/

The radiologist down here that read them, of course called me and gave me condolences assuming that my dog was dying. After talking with Dr. Mason however, she feels like it may be more likely something else. So yet again we come to a horrific crossroads. There are basically two possibilities:

1. The mass is in fact a tumor, and if that’s the case – it is unlikely that anything we do at this point is going to slow it down or stop it (considering it just appeared and grew to 5cm in just two weeks). If it is a tumor, we could go super aggressive and try another round of chemo or palladia and try to stabilize it or we could just go home and enjoy the time we have with him.

2. The ‘mass’ that is being seen, is located RIGHT where the lymph nodes in the chest are located. Dr. Mason is leaning more towards this, as her team has analyzed and re-analyzed everything..and they just don’t think it makes sense that it’s a tumor for several reasons. First off, she says that the other nodules that were in his chest (that we’ve been monitoring the last 3 months) HAVE NOT GROWN since the last xrays – woohoo! So, it really makes no sense that his lung mets that are visible have seemingly become stable and have not grown in the past two weeks – yes there’s this huge 5cm tumor that has all of a sudden popped up?! Secondly, Bentley is more hyper and playful and full of life than he’s EVER been..which also seems odd for a dog that is apparently quickly progressing in late stages of cancer in his lungs? Also, doesn’t make sense. And we do know that the vaccine had a HUGE immune response this last time, because of what happened to his heart. So, following this theory, it makes sense that his immune system is in overdrive attacking cancer in his lungs – which would then cause huge inflammatory response in his lymph nodes which would then be visible on xray! If this is what is happening, ANY supplements or chemotherapy agent that we add to his system – could actually suppress his immune system and stop it from attacking cancer cells. We assume that maybe this is what’s happening, especially since his other nodules have not grown at all.

So now – we either sit back and wait, hope and pray that it is an immune response and when we re-radiograph chest next week..cross our fingers the the ‘mass’ has not grown and that his nodules have stabilized or even shrunk.

OR

We assume that it’s a tumor and go ahead and up the supplements and add in everything we can and then re-radiograph again next week.

So for now we’re sitting tight and repeating chest films next week. I truly, in my gut, feel as though if this is a tumor and it is growing that rapidly – I just don’t believe there’s any miracle cure that will stop this and I want to just enjoy time with him. And secondly, I truly believe in the vaccine we did with him (otherwise i would not have driven overnight 10 hours every 3 weeks for it!), so taking into account the reaction that his immune system had this last round of the vaccine..something must be working right?!!?

Ughh. Roller Coaster ride is right..I’m so over it though. Thank you for letting me vent, I’d really love any opinions out there. Unfortunately, Bentley is the ONLY DOG in the world that has gone through this vaccine with lung mets and is still alive so we really have NOTHING to base this on..that’s why it’s all just a flip of a coin really.

Love and hugs to all!!

kate and bentley
xo

As I sit here to write this long overdue entry, I don’t even know where to begin. So much has happened over the past month!! I guess I will start where we left off – Bentley did go receive his third vaccine on 5.8.2014 and everything went well. Chest scans did show some more growth in the initial lung tumor and two more additional lung mets popped – but she said that it was NOTHING compared to what you normally see once there are mets in the lungs. So, we are hopeful that maybe that means that the vaccine is working?!?

After we got home from Bentleys third vaccine, we packed up the car and headed to the beach! Brandon and I were getting married on May 17, and we were having a destination wedding. So our wedding party and most of our family – went down the week before for vacation and to celebrate. Bentley LOVES the beach so he was very excited! The week down on the island was not nearly as relaxing as I had hoped it would be – I spent a good part of each day doing errands for the wedding and getting last minute stuff taken care of.

The wedding was beautiful, we had perfect weather – and although we ended up being over an hour behind schedule, everyone had a great time and our ceremony could not have been more perfect! And of course, Bentley was the ring bearer so it was amazing to be able to have him be a part of our special day! After the wedding week, Brandon and I went to Jamaica for a MUCH NEEDED week of down time. After planning a destination wedding for a year, everything going on with Bentley and trips back and forth to PA every three weeks, and then the week of the wedding which was just chaos..Jamaica was a god send! We did a whole lot of nothing, laid on the beach all day and stuffed ourselves with delicious food and drinks at night. While we were gone the kids got to have a week full of Auntie Vera who stayed at our house with them. It was an odd feeling once it was all over..I spent a year and a half pouring myself into this event and then in a blink of an eye it was all over. And sadly, I couldn’t even tell you what the ballroom looked like, whether or not the cigar bar on the veranda was any good, or how the centerpieces looked. It was definitely much different than I imagined our wedding day being, but I guess it makes sense – I was being pulled in 5908308 different directions all at the same time, felt like I didn’t seen any one person for more than 30 seconds, and honestly only saw my husband for our first and last dance. I have to tell ya, if we had to do it all over again – I think we’d elope and save the $30,000!!!!! I guess at the end of the day, everything is paid for we don’t owe anyone a dime and we are married. Our ceremony was absolutely perfect, and that’s what really matters. 🙂

So after reality sets back in and we’re back home, we have to turn around and go up to Pa on that Thursday (got home Monday the 26th)! Still not unpacked from vacation before the wedding, the wedding, or Jamaica, we get back in the car and head up to UPenn just like every other time. Assuming everything would go as it has every other time, we head back to pick Bentley up after vaccination to get on the road back home..and I receive a phone call from Dr. Mason. During Bentleys routine discharge testing that they do – they found that his EKG was showing abnormality. Not just a little abnormality..his heart rate was 220 (a dog his size should be between 50-90), and his heart was in complete VPC rhythm (which means that his sinus node was not working at all and his heart was firing from all other places in the heart and not where it was supposed to be). This is/was a side effect of the vaccine and we knew that going into it. However, the ‘side effect’ that they typically see is that during vaccination – the heart rate will increase a little and they will have an occassional VPC rhythm and then it’ll just go right back to normal. NEVER have then seen this reaction, in any scenerio at that hospital. Dr. Mason was very concerned, as anytime the heart is not in sinus rhythm – especially when it is that abnormal and with a heart rate off the charts..there is a great risk for heart failure. The heart was just not meant to function like that, especially for any period of time. They immediately moved him into the ICU where he remained for 4 days..the scariest and most emotional 4 days of my life. I actually think it was about 1000 times worse than the cancer diagnosis..which we all know is a death sentence. But this? no way, not now and not like this..we just go married, we have so much more to do together, and did I do this to him? If he dies right now I will NEVER forgive myself for putting him through this. It’s crazy what our mind goes through when we are suddenly stabbed in the chest (what it felt like). I think the worst was when she called us later Friday night – they had him hooked up to an IV and they had him on a CRI of beta blockers and membrane stabilizers to try to calm down his heart. They used lidocaine first, which caused him to have seizures. After doping him up to stop the seizures, they tried a different drug..which had no effect. The phone call we received after that when she had to ask me “How far we wanted them to go to bring him back if he did go into cardiac arrest?” – that was the turning moment for me. The moment that stopped me in my tracks and had me doubled over on the floor..shit just got real. She insisted that we come in to see him for a visit before bed ‘in case anything happened’. It was hands down the worst 24 hours of my life. Sunday morning however, brought good news..it seemed as though they had found the right combination of drugs to start to calm everything down..his heart rate was moving in the right direction. By Monday afternoon, they had increased some of his meds, and his heart rate was down to 80-110!!! He was starting to have some sinus rhythms coming through, which told her that his sinus node did still function properly and that there had hopefully not been any permanent damage (she was afraid after such a long period of time of abnormal function that his heart may not ever recover). I just have to add in here, that Dr. Mason, Dr. Hezzell (cardiologist there), and the ICU team are AMAZING. I have literally NEVER had so many people that GENUINELY cared so much about Bentley. I’m pretty certain that after an 80 hour work week, Dr Mason and Dr Hezzell didn’t leave Bentleys side the entire time..unbelievable. They were all so amazing, I could not ever imagine a better group of people to take care of my boy. I am seriously going to miss all of them!

We ended up coming home on Tuesday, still on a ridiculous drug regimen that has me up 24/7..but I’ll take that any day over the alternative. We did see a cardiologist on Friday to have an EKG done and it seems as though he is almost in complete sinus rhythm! We’re hopeful that we can start to decrease his meds, and that in a couple weeks he will be off of everything and have a completely normal functioning heart again!

So, what went wrong? And did anything in fact go wrong? Bentley had previously received this same vaccine, at the same dosage, three times. There are other dogs in this study who have received 5-7 vaccines and shown no side effects from more than 3 vaccines. Here’s the difference – Bentley has metastatic disease, the other dogs did not. There have only been 3 other dogs in this study, and unfortunately 2 of them passed away before receiving the 3rd vaccine (because the disease progressed so fast). And the third, just actually had a single nodule removed from their lung surgically because their cancer was seemingly “stable” after receiving the vaccine (meaning the disease wasn’t progressing any and the tumor wasn’t growing). So here’s the catch 22: the vaccine was created and designed to mount an immune response so that Bentley’s immune system will be ‘trained’ to attack and kill cancerous cells in his body. If Bentley has a GOOD immune response (meaning the vaccine is working really well and his immune system is on overdrive seeking out cancer), it will cause alot of inflammation (he usually gets a fever during vaccine, nausea, and kind of poopy feeling – much like you or I would if we have a virus). This is GREAT, and exactly what we hope will happen so that his body can hopefully fight this cancer. However, when the immune system gets all jacked up and inflamed and ready to kick ass..it releases something called cytokines, which can cause heart issues. We’re hopeful that this heart issue is going to settle down and that he is not going to have any long term effects, first and foremost. But, we’re also hoping that maybe the vaccine did have some effect on his lung tumors – and who knows, maybe a miracle?

We have obviously chosen not to re-vaccinate him, and Dr. Mason agrees. This is the response that we wanted, but not at the expense of his heart or his life. So, now we start over again. We are taking the next week or so to see how things settle down with his heart, and then we will re-evaluate and decide where to go from here. We still have options for chemotherapy, palladia, etc. but we’re not sure what we want to do if anything. There is some research to suggest that the vaccine and chemotherapy could have a synergistic effect, but everything of course is a gamble. If his heart is in any way compromised from this, we will not move forward with any other type of treatment – and will just take the time we have left with him and enjoy him. We do not want to put him through anything like what we went through last week, it’s just not worth it. If his heart goes back to completely normal with no effects, then we may consider chemotherapy or palladia but need to speak with oncologist first and weigh the options. We have to face reality..he’s probably not going to live alot longer, and I definitely want to enjoy whatever time we have! Not that I would not do anything, and spend all of our savings for him – but I want to make sure that it’s worth it for him!

So, that’s where we are currently! Whew, just typing all of this makes me tired. But my Bentley bear? He’s fast asleep on my feet dreaming peacefully right now..and I couldn’t ask for more. <3