April 11th, 2010 Couldn't You Just Break Your Neck? (Picture)
April 24th, 2010 Angels here on earth (Pictures)
April 27th, 2010 Update...barely
May 1, 2010 In Memory of Josh - In Honor of Josh (Pictures)
May 6, 2010 A message from Josh
May 8, 2010 Happy Mother's Day! (Pictures: baby Eliza is born)
May 9, 2010 Little Princess (Pictures)
May 19, 2010 Half way there
May 22, 2010 A daddy daughter moment (Picture)
June 10, 2010 A heavy dose of surreality (Pictures)
July 14, 2010 The Facts:
July 2010 Photo shoot with Amy Jo Photo (Pictures: links away from the blog)
September 9, 2010 The good and the bad
September 20, 2010 Help Me To Believe
November 9, 2010 Follicu-whatis?? (Pictures)
November 16, 2010 Perforated Septum
November 18, 2010 No duct tape and silly putty!
December 29, 2010 Meet the tumor, thank you (MRI image of the tumor)
January 2, 2011 Held
January 6, 2011 I am not the quiet type
February 28th, 2011 The Healer (Kristen's first post about her MS diagnosis)
March 20th, 2011 Back from vacation... (Pictures)
Last year while we were fundraising, the personal first person updates shared by Josh and Kristen would get lost on the Home page because new information about fundraising was shared daily. This page was where we added their updates as they shared them as a way to make those updates more accessible to those wanting to hear their story from Josh and Kristen.The posts below include some of the links above but were how I was sharing updates before making the list of links above. They are in reverse chronological order so if you are new to the blog scroll down to the bottom to find the first one and work your way up. Thanks!
September 20, 2010 from Kristen Baumgarten
Help Me To Believe
I (Kristen Baumgarten) updated our personal blog again, and decided that I would copy and past to this blog as well. There may be suggestions that I don't want to miss out on!
A new worry has plagued my mind. Well, not just one... I am also worried about GBM in the spine (once again, too much googling) but there is just one that I seriously need to address. My boys.
They are smart. They know what is going on. They understand that their dad is sick and that he has a tumor. They know that he goes to Salt Lake for medicine. They also know that sometimes people die. Ever since Josh had his first seizure (yes, he has had another since my last post) the boys keep making comments and asking questions about if their dad is dying or going to die.
How do you answer that? I have told them that he is going to be okay, but I know that isn't good enough because all three of them keep commenting. For example:
Kimball was emotional tonight. He was worried that his dad would keep having seizures and that he would die before we could go on vacation. He said, "He is our very first dad, and we don't want another dad."
On the day Josh had his second seizure (last Tuesday) McKay asked, "Is Dad going to die because Heavenly Father needs him like he needed Josh Graham?" (Josh Graham was a friend, our bishop, and my boss. We all loved Josh and miss him)
Friday after I drove Josh to work, Benson must have forgotten that we had taken Daddy to work because he was looking for him and said, "Where's Dad? Did he die?"
The truth is Josh and I both have decided that we must accept whatever the Lord's will and understand that in doing so, we will be able to find the peace and strength we need to be able to endure. Josh is better than me. I just want answers. I don't like feeling like things are up in the air. However, I KNOW that I have felt the quiet peace that comes from knowing the Lord is in charge and no matter the outcome everything will be alright.
As adults, with a life of experiences, we still struggle to understand that this life is given to us, and that we need to be okay with just letting go. So, how do you explain that to little boys? They are smart, yes. They have felt the Spirit. I know they have. I have been privileged to witness their sweet experiences. But they are still little boys. I wish that I could protect them from the harsh reality that we are facing. There are no concrete answers that we can give them. No absolutes in one direction or the other. Just that we are doing everything we can, but that ultimately it is up to Heavenly Father. Ultimately, Heavenly Father knows how their dad can best help these boys grow into righteous, stalwart, honorable men (which is something we pray for daily). Heavenly Father can work mighty miracles. He can see the big picture, and we are given so little and must extend our faith. It seems like such a hard lesson, a burden really, that doesn't seem fair to place on little boys.
So tonight, I am contemplating the best way to be honest and fair but to somehow protect them. We have plans to discuss it for Family Home Evening. I guess I have about 16-17 hours to figure out what the Lord would have me teach them.
When I was in seminary, I had an awesome teacher. Brother Kunz wrote lots of songs and used them in his lesson plans. The songs he wrote all had stories behind them. The one going through my head tonight was about a family who had a son injured in a terrible car accident. To the best of my memory (which may not be so great, given that it is nearly 2 am), the lyrics go something like this:
Help Me to Believe
As I kneel beside his bed, I think about the blessing on his head.
They were the words my Father gave to me. Help me to believe.
I know he hears and answers prayers, when we call him he is always there.
He promised miracles would never cease. Help me to believe.
And help me to put my trust in Thee. Hear my plea, please comfort me.
And help me see-- Miracles never cease. Help me to believe.
As I see him sitting there, I know his life is in our Father's care.
In his eyes I see his faith is complete. Help me to believe.
If I knelt at Jesus feet, He could heal my son so easily.
But I know his power works through me. Help me to believe.
And help me to put my trust in Thee. Hear my plea, please comfort me.
And help me see-- Miracles never cease. Help me to believe.
SIDENOTE: Hmm... I can't remember the rest. I tried to google it to see if I could find the lyrics. (I am getting really good at googling these days.) I just found out that he is teaching at BYU-Idaho. That's awesome. It sounds like his students enjoy his style of teaching as much as I did. One of the quickest ways to invite the spirit is through music, and he did that so often in our seminary classes. Anyway, that song is from his CD, I Believe.
Tonight, I feel like I am praying and pleading with the Lord to help me put my trust where it belongs: with Him. I am praying for comfort and faith. I am praying for the strength I need to be able to share it with my boys. I want to help them have faith, not fear. I am praying for the enabling power of the atonement to help me do something that I would not be able to do if left to my own means.
September 9, 2010 from Kristen Baumgarten
The good and the bad
I (Kristen Baumgarten) am running out of invitations to my private blog, and so I am going to try harder to update on this blog so that people know what is going on with Josh. To be honest, there really wasn't a lot going on until last Tuesday, (August 31).
Josh had a meeting to go to and was up early getting ready for it. He stepped out of the bathroom and hit the floor. He was having a seizure. There was a lot of craziness, but eventually he was taken to the ER by ambulance.
The next day we saw the nurse practitioner for Neuro-Oncology and practically had to INSIST on an MRI. Neither one of us are complacent about the situation to go a long with the suggestion to wait it out. They found that there has been tumor progression (the bad news), and possibly some cell death (the maybe good news). They decided they needed a little more time to determine what exactly was going on, and we will go back for another MRI later this month.
Please don't think that because I say this over and over that it loses it's sincerity. We HONESTLY and TRULY appreciate what everyone has done for us. We have come to draw on the strength from the prayers in our behalf on a daily basis. We still pray for blessings to be poured out upon those who have reached out their arms to support and lift us up. We recognize that those are the arms that the Lord uses to answer prayers. Those are the arms he sends as proxy to his own. Thank you.
July 14th, 2010 from Kristen Baumgarten
I (Kristen Baumgarten) wanted to post on this blog to give anyone who might be interested an update.
We went back to Salt Lake last Wednesday to see Josh's doctors, and for an MRI.
So here's the latest:
Josh's tumor has shrunk by a little over a centimeter. It was 4.5cm and is now 3.4cm.
He finished another cycle of Temodar (chemotherapy)
He will start another cycle of Temodar in about 21 days from today
He will continue to receive an infusion every two weeks as part of the study he is participating in. (It is a double blind study, and we aren't sure if he is receiving Avastin or saline)
He will not have another MRI until September unless there is a need for one.
We are fine, just taking one day at a time.
We are still overwhelmed and completely humbled by all that has been and continues to be done for our family. We continue to pray for blessings to be upon each of you for helping us carry the burden.
"'Our family’s faith is in Jesus Christ and is not dependent on outcomes.'
...We do all that we can for the healing of a loved one, and then we trust in the Lord for the outcome."
-Elder Dallin H. Oaks_____________________________________________
June 10th from Kristen Baumgarten
A heavy dose of Surreality
This is what I (Kristen Baumgarten) posted to our private blog yesterday. Click HERE for the version that includes the pictures.
Today was Josh's last day of treatment! There will be 28 days of "normal" life until he has to start another cycle of chemo. He will also have an MRI at that point to determine how effective treatment was. Until then though, I am so glad he will be able to rest more and be able to stay home. Although I just asked him what he thought he wanted to do tomorrow and he said that he thinks he will go to work!
Lately I have been feeling like this is all so surreal. It feels like the weirdest thing to realize that we are actually facing this. We are actually living this. This is something that always happens to other people, and it is always so upsetting and worrisome to hear their stories.
When my friend, Josh Graham, got sick I remember feeling the same way, thinking that it didn't seem real. It was SO hard to wrap my head around it. My heart ached for him and for his family. It just didn't seem fair, but I was amazed and inspired by his positive attitude and rock-solid faith.
Now, even though it has been a little over two months since my Josh was diagnosed, I am feeling that same feeling. I can't wrap my head around it. That surreal feeling was so strong at the Relay for Life during the survivor/fighter and caretaker walk. It was actually kind of hard and emotional. I just kept thinking: "I can't believe we are here doing this," and "How did we get here?" "How is it that so many people just randomly get thrown into this heart-breaking, scary, and yet faith-building/testing reality?" and "How are we among all these strong families and friends?"
This is just after the walk and I was feeling a little overwhelmed by everything. It felt so good to just have Josh put his arms around me and remind me that no matter what, everything would be okay.
Benson didn't want his daddy to go without him. He walked with him all the way around the track with all the other survivors/fighters. What a cute little man. He is such a sweet little boy.
This was the first time that we have ever participated in the Relay for Life, and even though we didn't participate in everything, I was impressed by how many people support the event and take the opportunity to honor and remember those who have experienced cancer in one way or another.
We have great friends who put a team together in honor of my Josh and in memory or Josh Graham. One of our friends that organized the team, brought luminaries for us to decorate. Because I thought what Kimball put on Josh's was so cute, I decided to take pictures of what we had done to remember them.
The first one is for Josh Graham and I just wrote just a few of the things that we remember and admire about Josh. (Toni, in case you read this, I hope you know how much we all loved your Josh and how I admire your strength. My heart still aches for you, and yet you set such a good example for me.)
The second is for my Josh and Kimball wrote a message for him on the back. The picture is of Josh throwing a ball with Kimball.
Before I put this post to rest, I have to post a picture of my baby. Eliza is one month old! Seriously? It's not fair. I hate that time goes by and they grow out of the newborn stage so quickly.
She actually has a little cold right now, and because she is still so tiny I took her in to the doctor to be sure that it was just a cold and that everything was fine. The doctor reassured me that she is fine, and we just have to wait for the virus to run its course. The fun part of the visit was that I got to have her weighed and found out that she is now 7lbs 11oz!! Way to grow Eliza! Holy smokes! That's a whole pound and two ounces since she was born a month ago.
Here she is just chillin' in the swing. See how her hair still sticks up all over everywhere? Benson says, "She meeds to fix hers hairs!" He is so cute about making sure I know when she needs me. They all love her so much. McKay is always so good to be sure he gives her a love and probably could never hold her enough and Kimball sings to her about how much he loves her and will always protect her.
May 18th from Kristen Baumgarten
Half way there!
Tuesday was Josh's 15th radiation treatment, and since he needs 30, he is half-way there! The best part is that he is still feeling pretty good. Yes, he has lost hair and yes, he gets really tired. But, he hasn't gotten sick and thanks to the radiation van that takes him to Salt Lake everyday, we have been able to try and maintain a "normal" family life. He is still in good spirits and positive about treatments, traveling, and everything in between.
Once his radiation treatments are done, he will have a "cooling period" for four weeks followed by another MRI and a shorter cycle of Temodar (the chemo). The MRI will determine how successful all this radiation and chemo have been on the tumor.
Everyday is a new day and a chance for us to be grateful for life and for all of you who have reached out to us in one way or another. Not a prayer is spoken that we do not thank our Heavenly Father for the acts of kindness, the service, the financial support, the well-wishes, the prayers in our behalf. We pray that blessings will be upon each of you for what you have done for us. We pray that in someway, someday, we might be able to reach out and show the same love and support to others and that we will never forget how humbling this experience has been.
With much love- Josh, Kristen, Kimball, McKay, Benson, and Eliza
May 8th baby Eliza was born at 9:00am weighing 6lbs 9oz and measuring 18 3/4 inches
May 6th from Josh Baumgarten
I want to express my thoughts of sincere gratitude to all in the Vernal/Roosevelt and surrounding communities in Utah, even in other States in this Great Nation, America, in which we all live in...each of your charitable thoughts & donations all in the spirit of brotherly/sisterly love has profoundly changed my life in ways that only strengthen my resolve to overcome this cancer by faith in Gods healing power through His Son Jesus Christ, and return this same service of love to my community.
Thank you Kristin for your example of love for our family in all that you have done and continue to do...contributing/sacrificing many long hours of your own family time because of the love you have for your friend, my wife - Kristen. I want to thank all of Kristen & my friends/ family who came together to help lift the burden of organizing and putting together her baby nursery, and countless other acts of kindness around the home. Please accept my sincere love to each of you and may Gods blessing be upon all who have participated in this miracle of Gods tender mercy for our family.
I Love You!
April 27th from Kristen Baumgarten
Update....barelyI know that a post is long overdue. It is just that every time I get started I have to stop because all of the emotion that I can safely tuck away comes flooding to the surface. There is so much that I can write to just get out of my system, but I am afraid to let it out. I am afraid that I won't be able to keep it together to function as a wife and mother or to just be able to make it from one minute to the next.
That being said, we did go to Salt Lake last week for appointments. Marathon appointments is what they should call them. They line up several people to talk to you and you end up being there for hours. Tuesday was long. Wednesday was longer. In a nutshell, they all wanted to make sure that we understood the diagnosis (glioblastoma multiforme) and what to expect. Treatment starts this Wednesday, April 28.
There was a lot of information, a lot to absorb, and in the end we realize that it doesn't really matter what experiences other patients have had. Yes, their diagnosis might be the same, but the Lord's plan for them is not.
Josh (who of course has much more faith than I) told me that he decided on the night we found out he had a brain tumor (before we knew it was cancer) that he had to put is full faith in the Lord. He decided to have faith that if it was the Lord's will to sustain his life, then it would be sustained.
He told me that was all that mattered and that it was our job to open our eyes to the big picture, to maintain an eternal perspective. We have to take comfort and hope in the fact that the Lord is in charge and is capable of making miracles happen.
So, then in the middle of the night when he tells me that his arm, leg, and face are numb I have to remind myself that overall, Josh isn't scared. I have to remind myself that everything will be ok. I have to turn my thoughts to the outpouring of love and support that we have been shown. I have to immediately say a prayer of gratitude for the goodness inside everyone around us. So many people who have made miracles happen. People who have given time, talents, resources, hearts and minds in our behalf. So much to be thankful for. So much to make me realize that I don't have the luxury of dwelling in the flood of fear. There are evidences all around us, through all of you, that the Lord is aware of us and of our needs. He sends those around us to share their love, to wrap their arms around us and remind us (or me) to put our faith in God.
So again, thank you for everything that is being done and for the constant reminder, which I have sincerely needed.
April 10th from Kristen Baumgarten
Couldn't you just break your neck??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).
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.