A Big Thank You to All You Bikers

As most of you know we have been battling this cancer for 2 years. Before that Cassandra was pregnant with Elliot. So for about 2 years and 9 months Cassandra has not felt normal. It is starting to take a toll on her. Even though we are lowering her pain meds she still has lingering pain here and there as well as occasional spikes of pain. Keytruda also has side effects. One of them being joint pain which Cassandra is now experiencing. We are also lowering the steroids which saps her energy. In Cassandra's own words, she is tired of being tired and in pain.

Even with all this pain Cassandra wants to push herself to become more independent. Lowering her steroids will go a long way to helping her walk again. October 7th is her next treatment. We are hoping that with every treatment she will see better or faster results.

Bikes, Blues, and BBQ was held this week. Some of the people at JB Hunt held a poker run for Cassandra. Altogether, they raised $3500 for us. That money and other donations to our gofundme site have really gone a long way to helping us pay some of our medical debt. We cannot thank you all enough for everything you have done.

Its been a while since we have posted any pictures. Here is Cassandra getting some quality time with Little E before bedtime.

Eric

Doctor Day

Today we saw the doctor. Im on a new drug for the tumors in my head. Ive had dizzy brain, and even 3 seizures or so. Im blessed that my parents and hubby are here to help. Ive also fallen a few times. Im lucky to say Ive been caught, so I haven't fallen too hard.

I have more IV treatment in 2 weeks. There aren't many side effects so thats good I am back in a wheelchair, and need help even getting on and off the potty. (which I hate). Sorry I haven't written, Im back to having issues with my words and sight. Im pretty much blind again. :(

So put it down, Im dependent on other people and I appreciate you're support.

thanks- Cassandra

After our talk with the doctor it was agreed that the drug, Keytruda, seems to be working. Cassandra is now off the pain patch and has been requiring less pain meds.  The only real question now is how far the drug will go. It has the possibility to completely eliminate the cancer in her brain or just beat it back for a few weeks. We won't know for a little while. If everything continues as planned we will get scans after all 4 treatments.

So for now our goal is to continue reducing pain meds and reducing the steroids. Once the steroids are gone we can work on getting her out of the wheelchair.

Eric

Lazy Sunday

Cassandra is doing pretty good lately. We have been lowering her pain meds slowly over the past few days and she is having less sudden spikes of pain. We always keep liquid morphine on hand to be able to deliver very fast pain relief if she ever gets one of these spikes and we have used very little lately.

Cassandra spends most of her days in our bedroom resting because her legs are still not 100%. I wouldn't even say they are 30%. She at times lacks strength to hold herself up and her balance is not great. She has had a couple of falls. Sometimes it is hard for her to request help when we are in the other room because she still thinks she can do everything she wants. So this has, at times, contributed to her falling.

The one big change lately is that Cassandra is now experiencing seizures fairly regularly. In the past 24 hours she has had two that we know of and one that I suspect happened in the middle of the night. We talked with our Oncologist about this in our last visit and he told us anytime there is changes in the brain there is always a chance for a seizure. What we don't know is what type of change is happening in her brain. It could be the cancer is progressing or it could be in retreat. I think that the cancer is in retreat because she continues to do better overall especially in regards to pain.

We see our Oncologist on Tuesday for a checkup and labs to make sure everything is going smoothly. On Tuesday it will have been one week since we got the Keytruda and over the next few weeks we can start to hopefully see more improvement.

Cassandra is blown away by all of your comments. We read all of them to her and at times she tears up from all the support. We really appreciate everything. She continues to be positive about the treatment and knows she still has a long road ahead of her.

Thank you all again
Eric

The New Plan

Today we saw our oncologist. The last time we saw him was in the hospice home and he said there was nothing more he could do. Today, we were all smiles. He was very excited about the new drug and said "You couldn't make a better drug for Cassandra." After a quick visit where he asked Cassandra how she felt, we went up to the chemo room to get her IV treatment. (Her new drug is not chemo, that's just what they call the room.)

The new plan is to get 2 treatments of Keytruda and see how Cassandra is feeling. If she is seeing signs of improvement, then we continue with the last 2 treatments. After all 4 treatments we will get a scan to see what is happening. If Cassandra has not improved after 2 treatments, we will then get a scan to see if the drug is working. If her cancer has progressed, we will stop the treatments since the drug isn't working.

The good news is we should find out pretty quick what is happening. In the next couple of weeks I fully expect Cassandra to have less pain and pressure in her head. After she starts feeling some pain relief we can start to work on other things like getting her walking and reading again.

Cassandra has already stated some of the things she wants to do when she feels better. She continues to stay very positive about the future.

Thank you all for your continued support!
Eric

Doctor Today

Cassandra has been in a lot of pain lately. I am having to give her more and more pain meds just to keep it under control. Today she will start her treatment after we visit the oncologist. Hopefully the meds work quick and she can start to have some relief. We dont know how quickly the new drug will work. This drug is so new not much is really known. What we do know about the drug is that she will get 4 treatments, spread out through 12 weeks.

I realize one of the reasons my wife started the blog was to brag about our son Elliot. Elliot is doing well, he has spent a lot of time with Aunts, Uncles and Grandparents. Everyday he learns a bunch of new words and its fun to see what he does next. He is a typical energetic 2 year old who keeps us all laughing.

I know the post is short today but I will write more after we return from the doctor.
Eric

CT PET Scan Results

Cassandra has no cancer from the neck down. While we were not overly concerned with cancer in her body, its good to have confirmation that her body is still holding the cancer at bay. The main purpose of the PET scan was to get all the information we could before we start her new treatment. If everything goes well, her treatment will start on Tuesday. From everything I have read on Keytruda, she should start to see some results within weeks.

Cassandra is doing pretty good considering all she has been though. She still has pain in her head with occasional intense pain. At least once a day I am having to give her increased pain meds. She is standing and moving better. She pushes herself everyday, sometimes a little to much. In her eyes, she is doing well enough to take trips out to Wal-Mart or Target and do some shopping. Although she is really doing better each day we have to convince her to stay home. This is no small feet as anyone who knows Cassandra knows she is a little stubborn. We can't fault her to much since its the same stubbornness that has got her this far.

So right now we are just laying low at home. Cassandra had two events in two weeks and we are trying to keep a potential third one from happening.

Eric

The past 24 hours....

Yesterday we got home around 1:00 pm. Cassandra reported very little pain and was very excited to be home. She had a good dinner and slept very well throughout the night. She woke up this morning with little to no pain but said she did feel pressure. At 7:30 am today Cassandra became unresponsive as she was sitting in a reclining chair in the living room. For 30 minutes, Cassandra's Mother and I kept her breathing and tried to wake her up. Her pulse dropped to 38 and for a while we all thought the worst. Cassandra finally started to come out of it at about 8:30 am. She opened her eyes and moved her hands and feet. The hospice nurse came and after talking with the doctors it was decided she had a stroke.

Over the past few hours Cassandra has been recovering from the stroke. She is talking, eating and drinking. She has even stood up to go to the bathroom with help walking. She is doing much better.

During all the chaos of trying to help Cassandra we were also informed that the new drug, Keytruda, has become available for her. Our oncology team is ordering it as we speak and ordering a set of CT PET scans for tomorrow. If there is anything that can potentially cure Cassandra or give her more time its this drug. This drug has the unique ability to fight the cancer everywhere in her body, no matter how small it is. Tumors can shrink or disappear and her cancer may have a chance of permanently going into remission.

As you can tell the past 24 hours have had a lot of ups and downs. Our main goal right now is to keep Cassandra recovering so we can get the scans tomorrow and start her new treatment.

I want to thank the JB Hunt Maintenance crew for the card yesterday. One of comments written on the card was "whenever you run out of rope, tie a knot and hang on" Cassandra has definitely tied her knot. Thanks again.

Eric

Lots of sleep and cookies...

The doctors continue to be amazed at how Cassandra has recovered from what seemed like the end only a week ago. We are still lowering her pain meds by increasing the frequency and decreasing the quantity. We are aiming to get her home on either Monday or Tuesday. All of this is contingent on her continuing to do well and the spikes of pain to become less frequent.

Cassandra still has pain as her medical condition has not improved any. That is to say she still has terminal cancer in the lining of her brain. The drugs that Cassandra used in the past, Immunotherapy, still have a chance of fighting the cancer. Also, we are chasing down any leads on any new drugs as they become available. One drug, Keytruda, was just approved by the FDA. It seems perfect for Cassandra but some more research needs to be done to see if she is a viable candidate for it.

Cassandra continues to do well in every way imaginable. Most of our time is spent eating cookies, watching TV and catching up on sleep. Also, many discussions on which skittles candy is the best and the merits of each one. Overwhelming support for the red and orange skittles while yellow is much loathed.

Our family is still blown away by all the support we have received. We cannot thank you all enough for your donations and words of support.

Eric

MRI Results

Our Oncologist stopped by Cassandra's room last night to give us the results. Unfortunately, her cancer cannot be treated and she will remain on hospice. Cassandra has a condition called leptomeningeal  disease. This basically means she has tumors in the lining of her brain and its very hard to treat. Because of their placement, our oncologist said it would not improve the quality or length of her life to do anything about them.

The good news is she did not have any bleeding or giant new tumors inside her brain. The reason for her pain is because she has cancer cells floating in the tissue and fluid that protect her brain and spinal cord. Sometimes these cancer cells will collect on a spot and cause her severe pain.

So our new plan is to try to get Cassandra back home. We are starting the pain patch today. We have to start it on low doses and slowly work up to the dose she will need to cover her pain needs. This may take a few days but I feel pretty confident that we can get her home by the weekend if she continues to do well.

Overall, this is pretty crushing news but we are trying to look at any silver lining we can. She is still doing well but ultimately there is a clock ticking we just don't know how long she has. As long as she continues to get stronger we know she has more time.

Eric

MRI Today

Today at 4:00 PM Cassandra will have an MRI. We wont get the results till tomorrow morning. If her results come back and her cancer hasn't spread she will be sent to Washington Regional for treatment. We don't know the treatment yet, most likely some surgery to get immediate results. If her scans come back that her cancer has spread then she will remain in hospice.

Cassandra continues to do well. She eats more everyday and is beginning to stand and walk more. Sometimes its all we can do to keep her in the bed. She wants to be active and always wants to push herself. She still has pain in her head and still complains about grogginess from the drugs but overall her condition is improving everyday.

Sorry this is a short post but right now there isn't much to say until we get the results back. Thanks for your continued thoughts and prayers.

Eric

Hope

Everyday Cassandra continues to improve. Her speech is getting faster and clearer. She ate some cookies and chicken last night. This morning she had eggs, biscuit and strawberries. She is more active, standing and taking wheelchair rides around the hospice home. Her top three complaints are her back (from being in bed so long), her grogginess (from the drugs), and her headaches. We have continued the same scheduled amount of painkillers she has been on for 3 days to make sure that her condition doesn't suddenly worsen.

The really good news is that Cassandra maybe able to go home soon. After talking with our Oncologist and the hospice doctor, a plan has been created to slowly introduce a pain patch. Using the pain patch will allow us to take her home since currently she is getting injections of drugs at the hospice home. Once we get her home we are going to have a MRI done to see what is going on in her brain. The last MRI we had showed a subtle area of development in her left frontal lobe and that is what is causing everything that is happening right now. My oncologist has a hunch that Cassandra had a "event". This event could have been a tumor rapidly growing and then exploding or a blood vessel in the brain rupturing and blood was leaking and now healed. If we get an MRI and it shows that she only has one area that is affected we can actively work to start treating the problem. If we get the MRI and there are multiple areas of development we will have to remain on hospice and it will only be a matter of time.

Cassandra continues to defy the doctors, odds, and show us what a truly courageous and strong fighter she is. I don't see a lot of tears in her room anymore, instead I see a lot of smiles. We still are against the odds and I have to say that she could still start going downhill at any moment but we are all running on the belief that she can continue to fight this.

Eric