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Rachel’s Story

In February 2011, I was diagnosed with an aggressive form of acute myeloid leukemia.  After two rounds of chemo and a bone marrow transplant in June 2011, I was in remission for 12 months until experiencing a serious relapse in June 2012. Rachel passed away peacefully surrounded by her family on October 13, 2012. If you want to help, you can give blood and get registered as a bone marrow donor on www.marrow.org. The survival rate that she always chose to believe in was 100%. She will always be 100%.

How it started... In February, I was feeling very fatigued and had a constant fever. I thought I might be anemic because I had been slightly anemic when I tried to donate blood a few months before. So I called the doctor and requested a blood test. In the middle of the night the doctor called and said I was so anemic I could have a stroke or heart attack at any time and sent me straight to the emergency room for an emergency blood transfusion. They didn't know what was wrong and the next day I had a bone marrow biopsy. A few days after they confirmed the worst: acute myeloid leukemia. The sub-type is called a 5Q deletion, which is a chromsomal abnormality that makes the prognosis "unfavorable." My only chance is a bone marrow transplant.  

In February, March and April I did two rounds of in-patient chemo at Kaiser that had various complications but I made it into remission. My brother was not a bone marrow match, but the doctors have since found three perfect matches for me. One of these people is going to save my life. In mid-June I will be begin full body radiation treatment at Stanford followed by ablative chemotherapy to wipe out my faulty bone marrow, which will be replaced by the immature stem cells taken from my angel donor. Hopefully, they will graft to my body and I will survive the complications of engraftment. I will stay at the hospital another few weeks until it's safe enough to be released. For the next 100 days I will need a full time caregiver and lots of rest, blood transfusions, and doctor visits.

The process is tenuous and scary but I plan on making it through it. It helps that am in remission going into transplant. The next year will be hard. If I relapse the cancer will be terminal, but if I go one year without recurrance the chances are very good that I'll be OK. At two years post-transplant they consider it practically cured. It's going to be a long road and there will be a lot of potholes. I will get through it with the support and prayers of my family and friends.

Everyone wants to help, and there is lots you can do. You can donate blood, and if you can't, ask someone you love to donate for you. Or ask everyone you know. You cannot direct your blood to go to me, but you can save someone else's life with every pint you give and there is so much need. You can also ask your blood bank to test you to give platelets. I have developed antibodies to platelets and they have to be specially matched to my DNA, so sometimes there aren't any platelets and I have to get by on prayer until the blood bank secures some. In general, there is a huge shortage of blood products, so anything you give will save a life. While many of you are not able to donate blood, you know someone who can, so please spread the word.

Somewhere out there three people (eventually match number increased to 10) have taken the time and steps to get on the bone marrow registry. One of these matches will go through the process of donating stem cells to me, a perfect stranger, to save my life. This selfless act starts by going to www.marrow.org and ordering a free testing kit, which contains swabs and directions how to painlessly add your DNA to the bone marrow registry. Even with 16 million people worldwide on the list, more than one person a day dies because they don't have a match. Leukemia is the number one disease killer of children under the age of 11. Most people don't realize that getting tested is painless and donating is an outpatient procedure with few side effects and more discomfort than pain. Unlike organ donation, it isn't invasive or surgical, and your body will reproduce the stem cells donated in a matter of weeks. Being a match means having very similar DNA to the patient, even a full sibling only has a 25% chance of matching. I was on the registry for over ten years and I never got called to give this gift.

While you can't do much to help me other than support my family with prayers, food, and goodwill, you can donate blood and get on the registry to save lives. I am keeping track of all the blood donated and the number of people who register, and each addition gives me strength to continue supporting this cause during a long life. This journey is long and arduous but I can do it. I am much younger and much stronger than this disease's usual demographic, so those nasty statistics don't apply to me. The only number that applies to me is 100%, the survival rate I am choosing to believe.

Until cure I am blessed just to be.


Latest Journal Update

Where's my $2 dollars...?

For some strange reason whenever I start to think about “two years”  all I can hear inside my head is, “I want my two dollars… more on that later…

Before I went to sleep last night I was watching Rachel’s pictures rotate on the digital frame in our living room and I was thinking to myself some of the same thoughts that have consumed my mind over these past two years… Why did she have to die?  I wish I could hold her just one more time.  My kids deserve to have their mom…  I try my best to try and summon Rachel’s strength and courage on a daily basis allowing me to be somewhat productive and for the most part we have been very productive.  The kids and I are all doing very well.  Rachel continues to teach me lessons all the time about love, courage and patience.  I keep her close and ask her to guide and look after us as we navigate the uncertainty of life.  She is always closest by when I need her.  My kids remind me of her constantly and she sometimes speaks through them saying things to me that I know only she could say right when I need to hear her most. Her physical body is gone but she is all around us and we feel her all of the time.

As much as I wish for her back every single day I realize that Rachel was suffering so much (even if she chose not to show it).  She was in very grave physical, emotional and spiritual pain throughout her long illness. She did not want to die and she fought so hard to stay with us. Her body lasted so much longer than it ever should have given her very aggressive form of cancer. She was such a hero to all of us - how could she ever let us down by actually dying? Looking at her pictures I was asking myself all of these “why me/us” questions and I soberly remembered that when she died she let go of all of her pain and was able to become her true self again.  By dying she found a way to be close to all of us again.  Her body could not stay with us anymore - this was the only way.

To me and my kids Rachel will always be all about tremendous love and happiness.  I was watching some home movies this past weekend, primarily to hear Rachel’s voice and see her beautiful self again… I was treated to re-visiting Evan’s 3rd birthday party and a great scene of Rachel sitting on the living room floor next to a very serious looking 3 year old Evan singing Happy Birthday.  She was beaming! She was so happy and so gorgeous sitting next to her beautiful son on his birthday.  Katie who was about 8 months old was looking up at mommy with the most adoring brown eyes you have ever seen while simultaneously making her little mean face we all used to love. Rachel kisses her baby boy at the end of “Happy Birthday” and you get this overwhelming feeling like nothing could ever be better than this moment in time.  Looking back it was one of those moments and I am so blessed to have that memory as well as many others forever.  My kids don’t remember this party, but they loved watching it.  Rachel had a way for making these occasions special and memorable for everyone. It was a gift.  Maybe that is what I miss the most – she made really ME feel SPECIAL and without her I often feel less than special.  Trust me, I  love hearing all of your support and I am very flattered by all of the compliments I get about being a good parent, but, I would trade all of it in a heartbeat just to see that proud look she used to get whenever I did something really good. Okay I guess that I am not only selfish but I am a bit insecure too...

Another realization…  Forgive me because I know everyone has only the best intentions... No, it has not gotten easier over time.  It really hasn’t.  I sincerely hope it never does – I will always carry the loss with me in my own personal way.  People need to please stop saying that to people who have lost someone.  Offer your love, support, friendship, a listening ear but please do not ever assume unless you have been there that you can predict how someone else will feel about losing a loved one after some amount of time? Rachel left me with two beautiful reasons to keep up a positive out look and keep moving forward, but, we carry the loss every second of every day (and it’s not quantifiable).  I'm not sure how I would go on without my kids? It is personal how we choose to deal with loss and often what you see is not what is going on inside. Everyone deals with loss differently.  For me, I have learned to embrace the sadness and sorrow when it comes and transform those feelings into signs of love and a continued feeling of connection with Rachel.  Dr. Seuss said, “Don’t cry because it’s over. Smile because it happened…” That is really what Rachel wanted for all of us.  Remember her fondly not with sadness.  Share an out loud laugh with her. Tell a very silly, slightly dirty joke today. Share a smile with a stranger.  When you have a problem that seems overwhelming try to find a way to help someone else with one of their problems. Hug your kids and tell them you love them now and forever. Tell your spouse or loved one that they are AMAZING and make them feel like it!  Donate, blood, platelets and sign up to be a bone marrow doner. While cancer took Rachel’s life it was also the adversity caused by the disease that led Rachel to inspire so many people.    

I realize that it’s selfish for me to want more from someone who already gave me so much. Rachel gave me everything and continues to find ways to give even when I can no longer see her and touch her.  Whenever I really look I will find her.  She always speaks through my kids, in my dreams and in my heart.

Okay back to “I want my $2 dollars…! “

This is a phrase Rachel used to say all of the time and it’s from one of her favorite ‘80s movies, “Better off Dead.” Imagine that  title… it is just so Rachel to put this in my head at this time of year…  I keep thinking “two years...” but keep hearing “I want my $2 dollars…!” inside of my crazy head.  It’s been like that for the past several days…what is wrong with me...?

“Four weeks, twenty papers, that's two dollars. Plus tip…”


She really did love her some John Cusack. 

Could all of this simply be more of Rachel’s twisted sense of humor coming through to me again at a time of need to lighten up my spirits?  Is this her way of telling me that after two years she really is exactly right where she is supposed to be (undoubtedly still helping others)?  Is she telling me AGAIN that she is never far if we know where to look?  Is she just fucking with me again…?

I think that this is all very likely and that she is still 100% being Rachel!

I hope you all are 100% as well!

Love, Rob

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11 Comentarios

Lisa Berkman
By lisa berkman
Hey there Rob. Do you remember Jeff Berkman? He was the distant sort - relative who "mentored" Rachel during the first part of her illness, and after transplant...he died a month ago. I tell you this not to bumb you out, but because I ( his wife) just casually went to caring bridge in an attempt to decide what to do with his sight. Instead I clicked on Rachel. I have no idea why. Probably to avoid Jeff,s. I didn't know that you plated occasionally. I appreciate your thoughts. It's so hard. I get it! Jeff wanted to live SO BADLY. More than I ever did myself. He was SO vibrant. Also, I agree it's only been a month, and my kids are young adults and teens, but it doesn't get easy. Someone told me a few days ago "you never get over it, but learn to be comfortable with it" I sure hope so. Peace and best wishes
Dan Brant
Awesome post Rob. Thank you for sharing that with us, it brought back a lot of memories of Rachel. It made me smile but it also made me miss her a lot. I'm pretty sure I watched that John Cusack movie with Rachel a time or two. Good stuff. I also think about Rachel around Halloween. I was always so impressed with the costumes and props she used to make for the kids. It was one of her many gifts. You and Evan and Katie are in our thoughts and prayers. We miss you Rachel.
Mike Cardoso
Rob, I can't believe it been two years. You're the example of strength and character that the rest of us can only hope to have, should we be faced with such a difficult situation. That's the ultimate tribute to Rachel. Evan and Katie are lucky to have you as their Dad.
1 person hearted this
Cara Rains
By Cara Rains
Wow Rob... Thank you for being so honest... I think people just feel like you can "get over it". But how could you, how could we? Never, she is a light that keeps going. I think of her humor ever day! Omg, she could make me laugh. The other day, West Side Story was on. On my 13 Birthday, Rachel spent the night and we had a marathon of West Side Story. We where so into it! It makes me smile to think of that night. I was officially a teen, but wanted only to hang with my crazy friend that day.
Now that I am back in California, and am in Davis...everything makes me think of her. And working at DHS, it is very strange. Some days I will walk onto the campus and think of her getting ready for a Volley ball game.
I love her. I will never stop talking about her! My light, my friend, my crazy tall blonde friend.
Love to you and the kids Rob!
1 person hearted this
Sarah Peres
By Sarah Peres
You nailed it Rob, Great post! Thinking of you, the kids and Rachel.
I've had countless moments where I'm doing something and here comes Rachel...pops in my head with one of her quotes or funny sayings and I just start to crack up. She had the gift of gab and the balls to say what everyone else was already thinking (but too afraid to say). I loved that about her and how we "got" each other. I miss her dearly, but if I just pause for a moment,...she's right here.

Big hugs,
1 person hearted this
Melissa Lipon
By Melissa Lipon
Thank you for your wisdom and your love. May you and the children be blessed with all that she wanted for you.

I miss her.
1 person hearted this
Josh Bartel
By Josh Bartel
Better Off Dead, the most watched movie of my youth....'This whole mountain is made of snow'!!!...Rachel would probably know what I'm talking about. Thank you for sharing this and know that it really helps those around you find perspective...hang in there brother.
1 person hearted this
Mary Carol Bernal
By Mary Carol Bernal
Thank you for this! She inspires you in your written word too! 🌺
1 person hearted this
Odilia Machado
By Odie
Very well said Rob... May you always find strength .. Never forget
1 person hearted this
Belinda Richardson
By Belinda Richardson
Rob...these are some amazing words. I must say that loosing my brother & Dad in the same year 10 years ago really hit my family hard especially my Mother. In time it does get easier and everyone is different...everyone mourns differently...you never forget...and the love is always there especially in our memories of great times. The one year anniversary of my brother's passing hit me very hard for some reason I will never understand and I went to grief counseling and it did help some. You are blessed to have two beautiful children and I love seeing the pictures you share on face book.
1 person hearted this