Friday, November 22, 2013

Another tsunami...

These last two weeks have brought a tsunami of emotions with them. I think I have experienced every emotion a human being can possibly experience...from joy and peace to distraught and to anger...hope to name it and I likely have experienced it at some point in the last 2 weeks.

I've found myself in a place that I haven't been since the first months after Keith's death. It's hard to be me right now. It's harder than hard to go through this life that I've been given. I've watched my son suffer over and over and over again for 18 years with no real end in sight. I watched, helpless, as cancer ravaged my husband's body. I held his hand while God called him home. I'm walking beside both of my children, trying to raise them up the way Keith and I had planned...except I'm doing it without him.

I'm now walking, watching, and waiting with my son as cancer is trying to ravage his body AGAIN. I'm watching, helpless, as he bravely goes into a room lined with lead where laser beams come out of the walls, go into his body, and try to kill this horrid disease. The very same disease that claimed the life of his dad.

I'm sitting in the same chairs I sat in while waiting for his dad to come out from the very same room for the very same reason.

18 years ago on November 27, 1995, I was told that my son would not live, because an incurable cancer was ravaging his little body.

17 years ago on September 3, 1996, I gave my son to the doctors who were going to replace the cancer filled liver with a donor liver. I was told I may not see him again.

16 years ago on December 5, 1997, I was told that if my son lived to see the morning it would be a miracle, because the central IV line planted inside his chest broke, traveled through the left ventricle of his heart, went down into his lungs, and punctured one of them.

15 years ago in 1998, I was told my son would die, because he had developed sepsis (blood infection) after having his tonsils and adenoids removed.

I can't keep going right now. I can't keep the list going. It's too overwhelming. I'm reading it and I see God's hands in each and every event. I know He was there. I know He IS here. I just have this mother's heart that has been bruised and broken so many times that I'm not sure how much more it can take. How much more heartache can it take? I never ask that. I NEVER ASK THAT! I do not even think that. Why am I thinking it now?!

I am trying to remain positive...hopeful...joyful...
I am finding it very...very...difficult.
I am just a mom whose family has been ravaged by cancer.

Saturday, November 9, 2013

Mind Over Matter

I simply can not concentrate today. I REALLY need to concentrate on schoolwork. I have a major test due by tomorrow that I haven't even finished the study materials for yet. Ugh...

What is keeping me from doing what needs to be done? I'm not exactly sure that it's one thing, but I know that a large part of it is Nick's health.

He was mapped and marked yesterday for radiation treatments. Yeah. We went from thinking Tuesday was a consult to being told "yes, Nick is a candidate for radiation. We'll call you once we speak with his regular oncologist." to a phone call the very next day that Nick is being mapped and marked on Friday morning.

I've been working since literally leaving the doctor's office on Tuesday morning, so I guess I really haven't had the opportunity for all of this to sink in...until this morning. It's Saturday and life is slower for me today. I can't get it off my mind.

My emotions are trying to be all over the place. I'm not really letting them. I'm not sure what or how I'm feeling. I'm nervous and a little scared. I'm trying to keep from comparing all of this to what happened with Keith. My brain is telling my heart there's nothing at all similar, but my heart is screaming that YES THERE IS!

I'm trying to keep a hold on all this jumbled up junk and not let it run rampant, but it is difficult. I need to talk about it. I can't though...not while the kids are around. Nick doesn't need to be scared any more than he already is. Kacie either.

Nick has PET scans on Monday morning. There are some questions about the degree of activity from the last set done at Children's in August the oncologists here need answered before radiation begins. The radiation oncologist mentioned Tuesday that the scans from Children's indicated a slight increase in activity. Sigh...

I guess I'm also taken aback by how fast everything is moving and changing. It's been a long, long time since things have changed this quickly with Nick's medical treatments. Usually it's been because his health was really in danger and fast action was necessary. It's not that way this time, but my heart doesn't seem to understand this.

Tuesday, November 5, 2013

Update on Nick 11/5/13

Well, I'm not exactly sure where to begin. First, THANK YOU for all of the thoughts and prayers. God definitely went before us and prepared the way. Second, I had an unexpected opportunity to talk with Dr. McCarty's nurse, Jill, who lost her husband in September. We didn't talk much, but I was able to give her some encouragement for her journey.

On to the update...Dr. McCarty was definitely ready for me and my questions! He had been studying Nick's entire medical history extensively. He talked with other radiation oncologists in the practice. They all agreed that Nick is a good candidate for stereo-tactic radiation therapy. :-) Dr. McCarty believes with 90% certainty (which is really, really good in the oncology world) that this radiation will sterilize the EBV that is driving the production of the cancer cells and kill the remaining cancer cells. He is also confident that the liver transplant will be protected. The side effects should be minimal. The amount of radiation Nick will receive will be mild in comparison to what the majority of folks receive. The estimated time frame for the radiation treatments is anywhere from 2 to 4 weeks of treatment. That is just an estimate until Dr. McCarty meets with Dr. Waples to coordinate chemo and IVIG schedules. Dr. McCarty also said he would like a fresh set of PET scans for use in planning and mapping Nick's radiation treatments. (It's a fascinating process.)

The only other major hurdle that we need covered in prayer is the financial side of things. I found out all this information today.

For all of Nick's life, he's had medical insurance that was a group policy. When he turned 19 in August, he lost his group coverage through the AllKids program. He aged out of the program. Nick isn't eligible for Medicaid, so I found him an Individual Blue policy from BCBS. It turns out that this policy is not all that great compared to what we are used to having for him. It isn't going to pay for all of Nick's medical costs. Please pray for us and the powers that be as Nick and I submit financial statements to receive assistance in paying for Nick's radiation, chemotherapy, and IVIG therapies. For the entire 18 years of Nick's health struggles, we have been blessed with excellent insurance coverage. Now...not so much when one chemo/IVIG treatment is $30,000.00 and I'm responsible for 20% of that read that right...I am responsible for paying $6,000 every 4 weeks. That isn't including the cost of the co-pays or the radiation treatments. The co-pays are $50.00 every time Nick walks through the door to see a specialist. He sees Dr. W once every 4 weeks and will see Dr. Mc at least once a week for the duration of the radiation treatments. I'm not sure about the co-pay amount for the radiation treatments yet.

As you can see, there is a HUGE need here. I don't know of any way that I will be able to pay even 1/10th of what is owed, especially while I am in school. Nick has been denied disability benefits. We are meeting with an attorney next week to fight this.

Pray as God leads Warriors!!!

We are definitely remaining...

In HIS Grip!