Sunday, April 11, 2010

Couldn't you just break your neck?

(Contributed by Kristen Baumgarten and posted with her permission)

So, here goes. It might be long.

I am not even sure I will actually publish this. Maybe I will just type it out and forget it. I haven't been able to sit down and actually get it out. It's too hard. Too real. Too close to the surface to actually tell it publicly or semi-publicly. While I am almost 34 weeks pregnant and would probably never like a picture of myself, I love this picture of Josh. (Thanks Mindy, for being so generous and flexible with your time and for taking these pictures).
Many of you probably already know the situation, but in case you don't, or in case you've heard it from someone two or three or eight people down the line... here it is.

Because of a snowmobile accident in December, we assumed the symptoms Josh began experiencing in January were a result of injury. I still remember giggling to myself when Josh came home from a church basketball game complaining that his "game" was off. Seriously? If I had only known.

The fine motor function in the right side of his body continued to decline beginning in his hand and arm and progressing to his leg and foot. When he finally decided that it wasn't all "in his head" he made an appointment with a chiropractor who eventually referred him to another doctor.

After considering all the possibilities and researching online, we were convinced that he may have a C6 spinal fracture. Honestly, the website that Josh found was like a checklist for all his symptoms. Without mentioning his oh-so-intelligent internet findings to the doctor, the doctor came up with the same conclusion.
I was relieved. I honestly thought to myself, "Phew, he just broke his neck." I was horrified by the other alternatives. And a broken neck was something that could be fixed. A little surgery, a few screws to keep his head on his shoulders. NO BIG DEAL. Totally acceptable problem. (Ok, so I am not trying to minimize a spinal fracture. I am simply saying that compared to the other alternatives it was something I could handle.)

The initial MRI of his neck showed that his neck was great. No breaks. No fractures. No pinched nerves. Hmph! We were wrong and so it was time to do some more looking. The doctor ordered another MRI of his brain to just make sure there wasn't anything neurological.

After the MRI Josh made his way to work when he got a phone call to turn around and go right back to the hospital. The doctors wanted to talk to him. He couldn't get a hold of me and then realized he couldn't tell me he had to go back to the hospital. Somewhere in the process he texted me that it might be a stroke. My sweet, always-there-for-you dad met him at the hospital to find out it wasn't that either.

My sweet, always-there-for-you mom and sister met me at my house. Shortly after, my dad and Josh made it home. Josh hesitated and then told me that it was a tumor, but the nature was unknown so we would need to go see a neurosurgeon in Salt Lake. Our appointment was Monday morning. It was only Friday (March 26). We would have to wait all weekend long. All the agonizing weekend long. Too much time to think about the possibilities. Too many sleepless hours to just think and wonder and try to prepare for whatever the outcome might be.

We went to the temple. We found peace. We knew that whatever would happen would be the Lord's will and that He would make it alright.

Monday's first appointment was discouraging. I am pretty sure that if I ever see that doctor again, I might slip and while I am falling, my fist might find it's way into his nose. The one good thing was that he referred us to Dr. Randy Jensen at the Huntsman Center. It was a miracle that we were able to see Dr. Jensen, as it was his day off and out-of-clinic. A tender mercy.

Dr. Jensen was a lot more optimistic and scheduled another MRI for Thursday (April 1) and surgery Friday (April 2). The MRI included a processes called mapping. They basically make a picture of the brain that is so incredibly accurate that the doctor knows EXACTLY what the brain will look like before they even make an incision. The mapping is then used throughout the surgery with electronic nodes that send signals from the brain to extremities and vice versa. That way, damage is minimized if not completely eliminated.

Using this process, they were able to learn that the tumor was deeply integrated into the brain tissue and were only able to extract a small portion of the tumor. It's purpose would serve as a sample for the pathologist. While they were able to come up with preliminary results, Dr. Jensen assured us that we should not be overly anxious and should wait for the final results. More waiting. This time from Friday (April 1st) to Wednesday (April 7). This time Josh would be trying to recover and heal from surgery.

He received TLC from the Neuro Critical Care Unit and physical therapy and then from the Neuro Acute Care Unit.

Determined and strong, my sweetheart stayed positive, in good humor, and close to the Lord. Surprisingly enough, they decided to discharge him Sunday morning. Easter morning. They said he was doing so well there was no use waiting for test results in a hospital bed. The rest of his recovery could be done at home! We missed our boys. We were glad to come home. Glad to see them and get our loves and kisses from each of them. (Even if Aunt Emily is more fun than Mom or Dad).

Wednesday was the day the pathologist would have the final results. The tumor board would meet to discuss the results and best course of action. We hoped we wouldn't have to wait any longer to hear.

The initial tests were confirmed. Cancer. Aggressive cancer. Silver lining? It is brain cancer, which means it is isolated to the brain and didn't originate from another source. Still, it is a high-grade, aggressive cancer that has to be treated right away.

I knew it. Somehow I knew it. I keep thinking about how I wish he could have just broken his neck. How it would be so much easier to deal with, it seems like such a more simple fix. Easier than cancer. Easier than facing what I have feared most. Easier than trying to be brave and happy when I really just want to wake up and everything will be back to normal.

So, taking it one step at a time, we had to wait again to hear from the oncologist that would be over radiation treatments. Fortunately, they called Thursday morning. Unfortunately, our first meeting/consultation won't be until he returns from vacation.

SOOO... until April 21st we are on hold. At least Josh has some time to heal from surgery and we have time to spend with the boys. There, I did it. I got it out.

Now seems like a good time to mention that we have been incredibly humbled and overwhelmed by the love and support of the angels that literally live among us. So many phone calls, kind gestures, prayers, acts of service... every time we turn around there is someone waiting to show us their support. Tender mercies. Answers to prayers. Those who are willing to "lift up the hands which hang down" (See D&C 81:5, one of my favorites) It is more than humbling to be on the receiving end of so much LOVE. Josh keeps reminding me that this is what people are like. This is their nature. People are good, and kind and loving and want to help where they can. How can we ever express our appreciation and gratitude to so much support? We know what we can do will never be enough. We can only pray that the tender mercies we have been shown will be there someday down the road for each one of the angels who surround us everyday. We pray that we can be the ones who "lift up the hands which hang down, and strengthen the feeble knees." In the meantime, thank you. Thank you for recognizing what a good man Josh is. Thank you for recognizing his testimony, his strength, loyalty, work ethic, faith and so much more.

8 comments:

THE BELL HOUSE BLOG said...

Thank you for writing, it's nice to hear it coming from you and not from everyone else. We love you and support you. We are praying for the whole family we love you!

James and Jade Bethers said...

I have never ever ever felt the spirit like I did when you and Josh bore your testimonies in church today. What a gift you gave to me and my family. I wasn't looking forward to fast sunday today, but as soon as sacrament started I knew that I was there for a reason and it was so I could be strengthend. Thank you so much for that and PLEASE, if I can do anything to help I will drop what I am doing at be right there.

Kassi Luck said...

How I look up to you and Josh. Wow! What strength you two have. I left church today with a better understanding of faith and I was so uplifted by your testimony and Josh's testimony. The spirit in that Chapel was incredible. You will continue to be in our prayers and please let me know if you need anything. Daysen always loves having friends to play with, so dont hesitate to call if you need someone to watch the boys. I know you have lots of family here, but I am just up the road and would love to help anyway that I can.

Anonymous said...

I totally agree with Jade and Kassi...the Spirit was so strong in Sacrament Meeting yesterday. It was definitiely a meeting to remember, my entire family was so touched (Brother Reynolds' horse story was great too!!)

I didn't realize what a great writer you are. What a great medium to be able to express your thoughts and journal your experience. Thanks for allowing us into your lives. Remember, Maeser 7th Ward is here for you and your family!!

Krista said...

I've been sitting here trying to decide what to type. What do you say in a situation like this? We were sorry to hear about Josh but we know that everything happens for a reason, even if we don't know what it is. Your family will be in our prayers.
P.S. Congratulation on the new baby girl! (almost)-Sam & Krista Taylor

Anonymous said...

I am a reader of the Apron Girls blog and linked here to your blog. We have been going through a similar whirlwind. My husband had surgery to remove a tumor last week and we just got the final patholgy report yesterday...cancer. A very rare form of cancer. We live in Nevada, but we are coming up to Huntsman in 2 weeks.
As I read your account of your situation, I laughed and cried. What else can you do?
A month ago, life was "normal"...busy with 5 kids, but "normal". Now, life will be a new "normal".
You have an amazing attitude and I look forward to following your blog. It gives me hope.
P.S. My husband grew up in Vernal...maybe this is all Vernal's fault!

Life Happens said...

I was just reading Mindy's blog and came over to yours. I am so sorry that your family is going through this! I know the Baumgarten's from the Dulles Branch and love them!! Josh and I actually went to Prom together as friends. My heart just broke as I read your posts, but as I read, I could tell that you guys are such a strong family. You have a beautiful family!

I will pray for you guys to get through this tough journey. May God bless you and give you strength.

gramma southam said...

My dear Kristin, the other daughter Melissa had as a best friend. What a wonderful example of faith and courage you have been. I hesitate to call you because you have enough to deal with, but check with your lovely mother frequently. Be assured of our prayers on behalf of all of you at this time. You are so sweet and precious...this is definitely NOT FAIR although I haven't heard you guys say that yet, so I will say it for you! There are such miracles all the time, we just have to be patient. We love you and just wanted you to know. Wade & Debbie Southam