Good news...good news...bad news

10.8.15

I know that I've said this before but it really does seem to be getting harder and harder to write. I think that writing it down makes everything real and our life is anything but what I want to be real right now. Hence, the reason it has been 3 months since I've written anything. It doesn't mean that I don't think about it every day because I do. I just can't seem to want to sit down and write. Instead of it being cathartic, I think I has become harder to relive everything that is happening by writing it down. And, it saves you from having me be able to remember all the gory details! Well, here goes a synopsis of the last 3 months...

The first Good News...Jimmy was accepted into the clinical trial for the drug Yondelis. This drug has been approved in other countries but not here in the US yet. It has also shown positive results in some forms of sarcoma although not in Jimmy's specific subtype. We were told that he would continue in this trial as long as Jimmy could tolerate the drug and that there was no tumor growth. If either of those things happened, then he would be out of the trial. This drug is not yet FDA approved for Jimmy's type of sarcoma but there was some indication that it may be beneficial. The infusion for this drug is 24 hours. Jimmy went for his first round on July 9th. They hooked him up to a portable pump and he was able to come home. We returned the next day after 24 hours for him to be disconnected. It all seemed to be going so well until the nausea kicked in. Jimmy was sick as a dog for about 4 days where all he did was throw up. For someone I have seen throw up only a couple of times in nearly 20 years (and even then it was because of partaking in too much alcohol consumption...HAHA), I knew he was really sick. I felt so helpless because there was nothing I could do to make it better. I would just put cold rags on his head and rub his back. Finally, it stopped and he started to feel a little better the following week. This trial drug is also a 21-day cycle. At the beginning of the second cycle, the doctor decided that the dosage of the trial drug should be lowered to help with the side effects. She also put him on a staggered steroid cycle to help minimize side effects as well. Thankfully, by doing both of these things, Jimmy's nausea all but went away during this cycle.

Before the next cycle was to begin, we were lucky enough to be sent on a vacation that we otherwise would not have had but for the kindness of Southwest Airlines and the Hyatt Regency in Clearwater Beach, Florida. I dealt with two of the most amazing people...Dena Roady, General Manager at the Hyatt Regency in Clearwater Beach and Kim Seale at Southwest Airlines. They were both kind, compassionate and made every detail of our trip magnificent, especially Dena. Our suite at the Hyatt was so beautiful and so much more than we expected. If you have an opportunity to use either company over the many others out there, I highly recommend using them. You will not be disappointed and your expectations will be met. The gratitude I have for these two companies in making what will most likely be our last family vacation is immeasurable. Dena and Kim, thank you so much for making it a week full of lasting memories for my family.

On August 20, 2015, the day that the 3rd cycle was to begin, Jimmy was scheduled for scans to see how the chemo was working. We were both nervous but optimistic. When we met with the doctor she explained that the tumor in the groin area had grown a little, the tumor in his hamstring had shrunk a little and the area in his abdomen and lungs had stayed about the same. I remember holding my breath waiting for her to say that he was out of the trial because of growth in the groin tumor. Fortunately, she thought that there was enough of an advantage that he could continue on the clinical trial. Whew! More good news. I could barely believe it. First, that Jimmy was lucky enough to be eligible for a trial and having it work too...this is truly a blessing. So, they hooked him up to his portable pump and off we went for round 3 of the trial drug. Round 3 went by without too much trouble. We only had one trip to the ER during this cycle and Jimmy got to come home instead of having to be admitted, which is usually the case.

During Round 3, Logan got the chance to go to Camp Kesem. This is a week-long, overnight camp specifically for kids that have a parent with cancer and its free to families. It is a great camp. A friend, whose husband had cancer told me about this camp. Her kids have gone in past years and they were going this year too. I'm glad because Logan had a friend at camp before he ever got there. Their days were spent having fun, fun and more fun! They did, however, take time during the week to talk about why they were all there. The kids could talk about it or not talk about it. Logan said he wasn't sure if he would talk or not when he got to camp. Every day I would stalk...well, maybe not stalk...ok, stalk (haha)...the Facebook page for the camp since daily pictures were posted of the kids. I could see in the pictures that Logan was having a better and better time as the week went on. This made me feel good, especially since we were not allowed to talk to the kids while they were at camp. I believe this was so much harder on me. I really missed Logan...he's my buddy and the person I do everything with now that Jimmy can't. It was hard but it was good for both of us. When Logan got home, he said he had the time of his life. The best part was when he told me that he "talked" at camp. He said he felt not so alone in knowing he wasn't the only kid dealing with cancer at home. Camp Kesem...Mission Accomplished. For those of you who might want to know about the camp for your kids, it is all over the US and each camp is organized by college students. Google it. I promise your kids will love it.

As summer was ending and school was starting, Round 4 of chemo began on September 10th. During the latter part of this round, Jimmy starting running a fever nearly every day of about 100 to 101 and his pain began to worsen. He went from walking around inside and outside the house by himself to once again using a crutch or walker in the house. We have continued to use the wheelchair when we have to go anywhere away from home too. Of course, I started to fear the worst and think that the trial wasn't working. I was literally a nervous wreck in the days before Jimmy's doctor visit. On October 1st, which is the start date of the next round, Jimmy was scheduled for blood work and scans to see how the chemo was working. Well, you guessed it...here's the bad news. The doctor told us that there was "significant" growth in all areas and that Jimmy could no longer continue the trial. W.T.F.

A million questions were in my mind as the doctor talked...
Now what do we do?
Are there any other options?
Will Jimmy die now?
OMG, what about Logan?

All I could do was sit there and cry quietly while the doctor continued to talk. I felt completely helpless. For the very first time through all of this, I was afraid of losing Jimmy. I have always thought of him as this strong, virile presence in my life that would always be there no matter what. And now, I could really lose him.

The doctor told us about another drug called Halaven. It is a breast cancer drug and has about a 20% chance of working. The average time it is known to work before tumor growth is about 3 months. On paper, this drug does look like it has the potential to help prolong Jimmy's life by several months if it works and that's all we can hope for right now. So, Jimmy started the first round of this chemo on October 5th. The treatment itself is very short. It took about 20 minutes for his pre-meds and the chemo itself is just an injection pushed through his port. We were literally in and out in 2 hours. He will get another treatment in 7 days and start round 2 two weeks later. For those of you who (thankfully) have not had the experience of chemotherapy treatments, this treatment is like the express line at the grocery store...short and quick.

Jimmy did start running a fever of 102 the day after chemo and we went to the ER to have him looked at and to have some tests run. The doctors seem to think it is either viral or "tumor fever" and he sent him home with an antibiotic. I have believed for the last couple of weeks that his fever was stemming from the growth of the tumors. His symptoms were eerily similar to what they were in the beginning of all of this. The only difference now is that Jimmy's pain has increased exponentially. The amount of pain medication it takes for Jimmy to just be in less pain is enough to kill an elephant. I truly don't know how much more he can take and it hurts me to see him this way all of the time. Today was a very emotional day for me. I am so scared of losing Jimmy and can't imagine my life without him. Every time I thought about it brought on a new round of tears and anxiety. I love my husband so much and I never dreamed I would be talking about death, funerals, being a widow and what's best for my son without his Dad at this point in my life. It makes me very sad.

Ever since Jimmy started the clinical trial in the beginning of July, Jimmy and I have had many candid conversations about life, financial issues and our future. Jimmy has consistently said the he wants Logan and I to live near my family when he is no longer here, so that we will have support we need to move forward. Financially, it is becoming harder and harder to continue to live where we are right now. Without any income since last year, we are struggling and need to make a change based on that as well. If we needed to, we can stay with family in MS and that's not an option here. I grew up in Louisiana and have family in Louisiana and Mississippi, but moving to be near my family would be a big change, especially for Logan. Even though I've lived up north for 27 years, I grew up down south so I know what its like. But, for Logan and as many times as he has visited my family and liked visiting, it would be life-altering to move, since he only knows living where he is now. Aside from that, I can't imagine moving without Jimmy because I would feel like I was leaving him behind. I don't want to be without Jimmy regardless and I definitely don't want to start over somewhere else without him.

So, the more we talked, the more we kept coming up with moving sooner rather than later. We made lists of the pros and cons for moving and we kept coming up with the same thing. It would be better to move together as a family and it would be better for Logan to move and get settled before something happened to Jimmy. I do not want Logan to have to lose everything he has ever known in one fell swoop and by moving as a family, we would be able to make memories in our new home and feel like Jimmy would always continue to be a part of our life instead of having the feeling of leaving him behind. Jimmy's only hesitation was leaving his family (since he's never lived away from them before) and the fear that they might not come to visit him. But, in the end, it came down to what is best for our family unit. Having said all of that, we have decided to move to Ocean Springs, Mississippi in December.

Now that the move has been decided, I am relieved to have a game plan for our future in place. Although I am worried about money and scared to death to move, I know deep down that this is what is best for Logan. Of course, I am now second guessing myself because I don't want to make a wrong decision for Logan's future. Isn't that always the way?! I did do a lot of research on where we would live and the school district in Ocean Springs is a good one. There is a US swim team for Logan there as well. But, most of all, Logan is very excited about the move and the fact that he will have a lot of boy cousins his age to grow up with, along with grandparents, aunts and uncles ready and waiting for him to arrive. So, as you can imagine, I have a lot of work to do between now and December.

As always, I thank you for your support and ask that you continue to pray for my family, especially asking that God relieve Jimmy from his debilitating pain so that he can have try to have a good quality of life. Until next time...xoxo