Day 8- Stem Cell Transplant

How will we tell the story of today?

Ian and I have often asked ourselves this over the last years. We are aware that we are living through a time in our lives that will shape us forever. We think of how we will explain it all to Tyler when he is old enough to understand.

Today was the biggest day so far. Transplant day. The doctors call it Day 0, as in the beginning. Every day afterwards is day 1, day 2, etc., but today your new life starts. Many survivors call it your new birthday because every year afterwards you celebrate the miracle of life on that day. I’ve never met a survivor who can’t tell me their age post-transplant.

As I thought about today this morning, I thought about beginnings and it took me back to the beginning of our journey with cancer. Ian found his diseased lymph node in February 2013 but our story actually began in October 2012.

I had just finished a doctorate. Ian and I were both working in jobs we loved. We had friends that we went out with and had plans to travel and just like that (boom) I was pregnant.

It was so utterly surprising. We had not planned it by any means and I remember as we stared in disbelief at one, then two, then three positive pregnancy tests.

We had wanted kids but like in the sense that you want to retire someday. There was no sense of urgency. We watched as what we thought we knew of our lives turned into nights researching cloth diaper brands and reading about the phases of labor.

As somebody who likes to stick to a plan, it took some getting used to on my part. It just did not make sense. When Ian got sick it took us a few months to realize the miracle that this pregnancy would be. Before Ian started treatment he had to sign consents that detailed the effect of the medications on fertility. We realized that we may never be able to have kids again and that the surprise of Tyler was really an unimaginable gift. The kind you could have never known to ask for, but that you so desperately need.

We were a sad sight those last months leading up to Tyler’s birth. I was a big pregnant beast in the blistering heat of an Arizona summer and Ian was bald and eyebrowless. We definitely turned heads at the mall.

Tyler was born on July 2, 2013. I was actually induced because Ian was scheduled to have chemo on July 5th. Having Tyler born on a chemo weekend would have broken me. His birth and life has been a miracle. He fiercely loves Ian. He is a daddy’s boy. I don’t know if we would have been able to keep going if it weren’t for him.

So as I sit here in Ian’s hospital room and reflect on these last 2 years I wonder, how will I tell the story of today?

Will I tell Tyler that we met daddy in the lobby this morning to give him an “it’s a boy” balloon and sing him happy birthday on his new special day? Will I tell Tyler that daddy had so many pastors, friends, and family who came and prayed a blessing for his transplant and for his new life ahead of him? Will I tell him that daddy received back cells through the miracle of stem cell transplant that will cure him and save his life?

I will tell him that so many people who love Ian told him that he has more to do. They told him that they look forward to the great things God will do with his new life. I will tell him that his Nani, Kit, felt “aware of the miracle she was experiencing”. I will tell him that his Uncle Colt cried.

We are grateful people. These last few years have had darkness but there has also been the soft glow of the light of hope that cannot be extinguished. We cling to that light.

Thank you for your prayers. Thank you for loving us in this time. We now start the first days of Ian’s new life. His hardest days are ahead of him as the chemo goes to work on his body and his stem cells begin to incorporate into his bone marrow and engraft. Ian still asks for visitors. You all bring him so much joy!

We love you.

-Shiloh

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The stem cell blessing ceremony

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Getting annointed with oil

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Stem cells arrive

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Getting Benadryl which made him super sleepy…

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Taking out stem cells

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Checking and double checking stem cells

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Transplant begins

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Transplant complete!

Day 7: I see pride, I see power…

So Ian had his last dose of chemo forever today! I can’t tell you how much I have looked forward to writing that sentence!

It was the big one today: Melphalan. I spoke yesterday about how this drug causes mucositis or ulcers on the mucous membranes (mouth, esophagus, and intestines). One of the ways to help or prevent some of this side effect is to chew ice. Ian was asked to continuously chew ice for 2.5 hours while he received the medication. This is actually harder than it sounds because eventually it starts to hurt. The other curve ball is that Melphalan is very nauseating. Ian got sick once but otherwise did well. He faithfully chewed his ice all the way through and we hope that his mouth ulcers will be minimal because of it.

One of the things Ian loves to tell the nurses is that he’s the “toughest patient they’ve got.” Most of the time he says it when the nurse is apologizing for something uncomfortable they are going to do. It’s his kind way of saying “it’s ok,” but it’s true. Ian is really really tough.

Today we had so many visitors, it was wonderful. It was so fun to watch Ian joking with his friends and talking about justice and politics. I knew I had a great husband, but he really is something special. While we were walking by, he busted into the aphoresis center (where they collect stem cells) and said hello to all the nurses who collected his stem cells. They of course remembered him. He ran into his radiation oncologist in the cafeteria and they talked for 20 minutes. Everywhere he goes he knows people or is meeting people. Ian is a force. Even in this transplant process his hope and love of life and people shows through and it is contagious.

Mr. T came and spent a good amount of time today. We don’t know exactly when, but probably soon Ian won’t be able to go downstairs to see tyler. That will be a very hard day. Today they played legos, threw Legos, danced, and played chase; all in the lobby at mayo. It was a hard goodbye. Tyler just didn’t want to let Ian go. He kept clinging to ian and saying “buh bye” to the rest of us. He cried a lot as Ian had to walk away. Shoot, we all wanted to cry too.

Tomorrow is a huge day. Huge. Ian will get transplanted with his stem cells at 11am. The hardest days are ahead of us but Ian is tough. In the words of cool runnings, kit, kris, and I decided that when we see him “we se pride, we see power, we see a badass father who won’t take no crap off of nobody!” (We also decided to sing and chant this to him a lot today and make him watch you tube clips we found from the movie) so for you all, I leave you with this video…

http://m.youtube.com/watch?v=7zFHkBQBg-4

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Last dose of chemo complete!!

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Snuggle bugs!

Day 6: so what was the big deal with dungeons and dragons?

So today is Ian’s last two-a-day. Tomorrow he will get his last dose of chemo before being transplanted on Tuesday. Today it felt like things have actually gone fast.

A bunch of Ian’s buddies came by today to play a game called Munchkins. It’s pretty much a kind of complicated card game akin to dungeons and dragons, only sillier. None of us had ever played before and it took us about 2-3 hours of playing to figure out the rules. I’m just going to say it… Kory won the first round because none of us knew enough to see he was cheating. I won the second round because I’m awesome. Dallas won the the last round because by that time we were going on 6 hours and nobody cared. The game was actually really fun and it got us all asking “so what was the deal with dungeons and dragons?” As in, why was that bad to play? Luckily kit was there and she has prepared the beginnings of a doctoral dissertation on the subject. She’d love to discuss it with you.

But that’s all besides the point. We felt lucky to be surrounded by friends today who love Ian. These dudes have hung with him during all seasons of life including this last one.

Cancer can be isolating. People just don’t come around as often anymore. I’m sure we’re pretty much a bummer to be around now but I also think that everyone has their own history with cancer. Either they are a survivor them self or they have seen someone they love affected by cancer. All those emotions associated with previous cancer experiences get brought up when you are around it again and sometimes it’s just too much to take. I think some people stay away because they have to so they can keep going.

But there are those despite their own battle with cancer and all the bad memories being in hospital bring up who still choose to be with us during this time. Ian’s cousin and his wife spent the better part of the day with us today. This has been a difficult year for them too. Cancer came uninvited to their home, like it always does, and they faced it. We are happy that our cousin’s wife is well, we are sorry that they had to go through such a horrible experience.

Ian gets his last dose of chemo tomorrow. Melphalan. It’s kind of the worst one. It causes mucositis; sores in your mouth, esophagus, and intestines. There are some ways to lessen this side effect and we hope it will be mild for Ian.

I am so thankful to you all for reading my ramblings everyday. Your comments encourage Ian and I so much. Thank you for all your prayers and support.

-Shiloh

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All phones seem to call Dada 😀

Blonde babes, birthdays, and BEAM

So the trudge through Ian’s chemo regimen, BEAM, continued today.

Ian is still getting etoposide and cytarabine at 11am and 11pm. I am trying to be there for both but last night my alarm didn’t go off so I missed the 11pm dose. Ian did fine though, and I came in early in the morning to be with him.

A lot of transplant survivors stressed the importance of having a routine every day so you don’t go absolutely crazy. It’s hard being anywhere for 21 days but being stuck in a hospital, hooked to an IV pole 24/7 can be maddening.

So, Ian has a little routine. The nurses get him up around 7:30am at shift change and he eats breakfast. Then he gets in a shower and after will go for a short walk. Later he sits and reads. (Right now he is reading a biography about Burton Barr.) He normally reads until 11 or so when they hang his chemo. Then he likes to “walk the pod” until the batteries on his IV pumps run out. The mayo hospital design has a bunch of small nursing “pods” and the perimeter of the pod is maybe 50 yards. He has already walked it hundreds of times. He zooms around with his IV pole while listening to pod casts.

The afternoons are when we normally have visitors and tyler always comes after his afternoon nap. Ian and tyler play Legos and chase in the lobby. Tyler now has the sense that he owns the joint and he loves running through the halls yelling “hi dada!”

Today was typical in the sense that the routine stayed about the same. In the afternoon Ian began to feel the kind of fatigue that only chemo can cause. People have told me it’s about as subtle as a semi truck. You have no choice but to close your eyes. Tyler snuggled Ian while he snoozed in the lobby all the same.

So you might be wondering where the blonde babes from the title fit into our day? Well I’ll tell you, I was walking to the cafeteria with the family and spied Bonni and the other nurses from the chemo unit where Ian has received all of his chemo over the last year and a half. They came to visit him equipped with Santa hats and candy canes. They sang and danced for him ( I forgot to take a picture but I feel like the title picture is close enough😊). These women are angels. Saints. We will love them forever.

Overall somehow today still felt more saddening than anything. Ian is starting to show more symptoms of the poison they have been giving him and despite wanting to not believe that all of this is becoming our new “normal” we are developing routines. I guess that in itself is just sad. We miss being with our son, in our house, going out and being with friends. We are tired but anxious. It is hard to find peace in this place.

We appreciate you all so much. I read your comments to Ian and he smiles and knows he is loved. we really feel like the whole world is praying for us. Thank you all for your support.

And if you have actually made it to the end of this very long post, I will tell you a secret… Today is my birthday. I turned 28

– Shiloh

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Day 4- two-a-days

So I didn’t get to posting yesterday. We actually kept pretty busy. Our family had celebrated Christmas on the Sunday before Ian went to the hospital, but we still felt that it was Christmas nonetheless and it gave the day an air of celebration dotted with melancholy.

Ian started the next portion of his BEAM chemo regimen yesterday with two new drugs: etoposide and cytarabine. They run for two hours at 11 am and two hours at 11 pm. If you think of us during those times you can pray for Ian’s strength, both physical and mental.

We spent Christmas morning watching old SNL reruns and the Christmas Story. Ian napped in the afternoon. Then Montse, Karo, and Belen came to visit. Ian got to move into a bigger room and Karo helped give the room a makeover. Now we have letters on the walls and lots of pictures of Mr. T for Ian to draw encouragement from.

All of my family came, my best friend Melissa spent time with us and kit, Ian’s mom, showed up with mr. T.

Kit made very special Christmas presents for everyone in the family this year: “solidarity pajamas”. We all have handmade pajamas that say “Jehovah Rafa” which means the God who heals. Nights are hard on patients in the hospital. Sleep is fleeting and its impossible to not feel some degree of loneliness. I guess kit just knew this, and now we all wear a reminder to bed that we are standing with Ian in his battle.

The chemo is hard. It just is. The mental battle that ensues when you are confined, and feel awful and scared is real. There are moments when you just feel like you’ve had the wind knocked out of you. The fear can paralyze you. It sucks being in the hospital on Christmas. But Ian continues to be tough, he fights and stays active, jokes with the nurses and loves on our son.

Thank you to everyone who visited yesterday. We needed it. We love you all.

Today Ian continues with his two-a-days. He will get chemo at 11am and 11pm for today and the next two days. We are grateful for your prayers and support and we love when you visit. It keeps us going.

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Day 2- Happy (almost) birthday Jesus!

Well things are getting real over here on the bone marrow transplant unit. Ian says he slept ok overnight except for getting woken up a few times by the nurses.

Ian is getting a conditioning chemo regimen called BEAM, and today on the menu he has Carmustine.

So here’s a little factoid:
You all remember mustard gas, right? It was an up and coming agent of war in WWI. But it wasn’t until some soldiers were clearing out a warehouse packed full of mustard gas in WWII, that some doctor decided to figure out what made folks feel so horrible after being exposed. It’s an irritant for sure, it makes your eyes and lungs burn, but it is also a great poison for bone marrow. The doctor found that when he tested those soldiers blood they had little to no white or red blood cells. And that’s the goal of these first few days. Out with the old as they say! Got to make room for the new stem cells!

But back to the story… The doctor talked to some other doctors and they decided to see what would happen if they pumped mustard gas into the veins of leukemia patients. Turns out it worked, for a while at least.

Years of research have produced multiple drugs that are mustard gas derivatives, many that are still used to treat lymphoma and leukemia. Carmustine is one of them. Ian’s chemo ran for two hours today and he did very well. Towards the end of his infusion his eyes and mouth burned and his face turned red as thAt irritating drug made its way into his capillaries. Ian is the toughest guy I know though, so he took it in stride. He joked with the nurses and pushed through.

He is resting now. He still says he wants visitors though, at anytime. We are so thankful to everyone that has visited so far. You all don’t know how much your support and encouragement keeps us going.

We love you all! Merry Christmas Eve!

-Shiloh

Checking in…

Well gang, the day has come. We are so thankful we got to see so many of you this weekend!

We started the day by getting some last minute snuggles in with Mr. T (our son, not the actor), then we took off.

We met with the oncologist and Ian had to sign his informed consent which had a bunch of scary stuff in it. We went and got some breakfast then we headed to the hospital.

Ian is getting checked in now. He will get his picc line placed in a bit the we plan to spend the rest of the day hanging.

Feel free to stop by whenever guys!