A Haze with Light on the Horizon

A haze, like I am sitting in a tea cup ride dizzily tossed amongst strange and familiar faces. I feel like the hospital is a brain vacuum, my brain is being sucked out of my ears, I spin, and send out texts to my family, the nanny, friends, making sure that someone in the real world is remembering to pick my kids up from camp, feed them, wait, school starts next week, we need to meet the teacher at 4pm Friday!

The Weekend through Monday:

Since Friday, fever of 105 degrees, moved to the ICU, put on pressers, can’t move, no walking, tears, fevers, blood pressure, more pressers, sucked into a dark whirlpool, Monday morning Josh starts diuretics, a sliver of light.

Tuesday:

At 6:30am the pressers were removed. We walked. All Josh’s doctors were skeptical of Josh getting out of the hospital by August 22nd (first day of school), but they said we could stretch and try to shoot for it. The medical team’s goal was to get him home by August 26th, my oldest daughters birthday. But Josh didn’t/doesn’t want to wait until next week and neither do I. As I sat with him in a post fever chemo deloted haze and listened to doctors and nurses repeat that you don’t just walk home from the ICU, I jumped from my seat. YOU DON’T WALK OUT OF THE ICU, BUT YOU DO WALK OUT OF THE BONE MARROW TRANSPLANT UNIT!!!!!

When a doctor enters the ICU, a patient is immediately seen in ICU colored glasses, which means they are seen as sick and incapable of walking out. Doctors and nurses were not going to continue to look at Josh with ICU colored glasses. I WOULD GET HIM THE F*** OUT!

If you know me, you know when I get passionate about something I don’t quit. I marched throughout the 3rd floor/transplant and harassed every upper level charge nurse, social worker, doctor, and psychologist who works on Josh’s case. I told them that Josh must be moved from the ICU and it must be done ASAP. Also, he MUST come home this weekend. We have help at home. Josh’s dad is a practicing ER doctor. We can hire home care, but psychologically Josh must be home by our children’s first day of school.

By the end of the day, I conceded that maybe it was best to keep him over night in the ICU to watch his blood pressure, but we were staying there for only 24 hours. This meant he was off the pressers at 6:30am and then he needed to move by 6:31am on Wednesday. Throughout the day, nurses and doctors kept repeating the exit goal was August 22nd.

Wednesday:

At 6:31 Wednesday, Josh’s dad helped move him out of the ICU to the regular transplant wing. He got a view of the parking garage, which is much improved from our original view of a lone broom left on a roof. Suddenly, discharge date became Friday, August 17th. The requirements for discharge, Josh must lose 20 lbs. of fluid, no fever for 24 hours, and take all oral medications. We are weighting for the edema to fly far away, but everything else on the list has been checked off.

Josh walked 2.56 miles today, 5,369 steps. On Friday, Saturday, Sunday, Monday, he was plugged into the wall with no extension chord. He took less than 20 steps total.

Wednesday afternoon, hospital brain suck again, Josh received a call from Josh’s disability insurance, stating our claim for disability was terminated because the paperwork from the hospital was never sent to Aetna. Josh answered the phone when I was in the cafeteria, not the call you want to hear after leaving the ICU. Immediately, I turned around to call the clinic, but then decided why call the clinic, when I can march downstairs and camp out in their front office until someone faxes Aetna our disability paperwork, so that is how I spent my Wednesday afternoon.

As an aside, this morning our social worker did acupuncture on my ears while Josh napped. I guess it is used on methadone addicts, for smoking cessation, and PTSD. FYI, in case you can’t tell, cancer and transplants cause PTSD for patients and their caregivers. Diagnosis/Treatment/ICU, this is trauma like I have never felt before and hopefully won’t feel again. The needles zonked me out in a blissful haze on a hard wooden chair in Josh’s room. It was magical and centered me, carried me through today with no tears and not too much fury.

New exit date is Friday, August 19th. Fingers and toes are crossed that the edema melts off his body and we get Josh home to his kids. Thanks for the prayers and please keep them coming.

 

 

 

A Day of Tears

August 15th, may be the day of tears. I cried all over the place, the coffee shop, Josh’s room, and I stalked down a familiar nurse to tell her I needed a hug and cried to her too. When Josh checked into the hospital more than two weeks ago August 15th was the day he had in his mind that he would be returning home, but here we are and it is August 15th and Josh is still in the ICU. When we checked in, we were told that once he hits an ANC (white blood count) of 500 then he could be home.An ANC of 500 was our goal, the magic number, that would free us from hell, but today Josh has an ANC of 1,900 and we are still in the ICU.

It was a hellish weekend. Josh had spiking fevers, rigors, full body rash, and was sicker than I have ever seen anyone in my entire life. Terrifying, but that word doesn’t capture it. As he shook uncontrollably, all I could do was hug his legs, and chant to myself, Please God, heal him. Please God, heal him. Please God.

The specialists debated whether Josh had an infection or whether this was engraftment syndrome. Engraftment syndrome is when the new bone marrow kicks into action and starts producing blood (obviously not the medical definition) and creates high fevers and rashes. However, engraftment syndrome and infection present similarly, and doctors can’t risk infection when a patient’s ANC is 0, because infection can lead to death. Due to the risk of infection, the doctors placed him on antibiotics. On Saturday he had CT scan of his lungs, and initially it was read by radiologists as pneumonia. They loaded him up with fluids, antibiotics, platelets, and a blood transfusion, to protect him if there was a bacterial infection. His blood pressure plummeted, so he was put on a presser machine to keep his pressure up to protect his organs. He was given granix injections to jump start blood production to help fight infection.The granix created horrendous bone pain, but it worked. Over the weekend his ANC jumped from 0-1950.

Josh and I were hyper fixated on his ANC. In our minds, an ANC of 500 equals green light to go home. However, his ANC is 1950 and we are still here. An unforeseen road block of high temperature and low blood pressure crashed into us.

This morning, August 15th, we were discouraged, more than discouraged. Josh discovered his Amyloid due to swelling in his legs. Due to all the treatments over the weekend, Josh gained 40 lbs. of fluid. Josh believed that the fluid in his lungs that appeared in the CT scan was caused by the edema in his abdomen, but no one could do anything about it because of the risk of sepsis or pneumonia. He was miserable from the fluid, but the doctors wouldn’t let him use diuretics to release the fluid because they didn’t want a further decrease in blood pressure. We felt hopeless watching the blood pressure cuff tighten every 15 minutes, waiting for his blood pressure to stabilize. His blood pressure improved throughout the day and we hoped they would remove the pressers (blood pressure machines), only to have his pressure dip while he was sleeping. The pressers suck because Josh is not allowed to walk when hooked to them, and when I say walk, I mean literally he is not permitted to walk to the bathroom. Nurses bring a bucket bedside. The pressers feel like happiness vacuums and last night they added another presser. We had been praying to get off one and they gave us another. There are no words. Until today the only answer was to be patient and his blood pressure will rise, but it is nearly impossible to be patient, watching someone you love suffer.

Today, August 15th, the doctors officially diagnosed Josh with engraftment syndrome. He does not have pneumonia!!! The fluid in his lungs is from the edema (as Josh thought). Dr. Matous says he has no infection. On the scale of one to ten of worrying about Josh’s life being at stake, Dr. Matous gave him a one. He removed him from antibiotics. The nephrologist agreed to begin diuresis, and they continue to try to wean him from the pressers. Josh is miserable and suffering, but currently his life is not at stake. We can see a glimmer of light. The doctors agree the fluid is a problem and they are dealing with it.

Josh wants to be home. I want Josh home.The kids want Josh home. It is depressing being stuck in the hospital while other families finish their summer vacations. We were supposed to leave for Montana this week, but now we don’t know whether Josh will be home for the kids first day of school or our oldest’s 7th birthday. We choose to believe that he will be. Although we are well aware that life goes on for others while we are stuck in the ICU, it is hard browsing social media to see #bestdayever when Josh suffers in the ICU. Social media, the blessing and the curse.

“Do you know what my birthday wish is when I blow out the candles?” My daughter whispered before bed. I hugged her, I’ve missed more bedtimes in the last couple weeks than I have over the past seven years, and Josh has missed more than that. Until now, he has never spent more than two nights away from the kids. It hurts.

“What?” I asked.

“My birthday wish is that Daddy gets better and no one in our family gets this sick ever again.” She squeezed me tight.

“That is my wish too.”

“Last year I wished my stuffed animals could talk.” She giggled.

“I remember. Well, hopefully, this one comes true.” I laughed.

I pray Josh exceeds all the doctors expectations. I pray he comes home this week. I pray he is home before our oldest baby’s birthday. PRAYERS, MAGIC, BIRTHDAY CANDLE WISHES, NO MORE INVISIBLE ROAD BLOCKS.

 

 

 

 

Stem Cell Transplant Day +11

Yesterday (SCT Day +10)  Josh hit rock bottom, the night before he developed a fever, but yesterday morning when I arrived at the hospital he was playing gin rummy with his mother and had a fever of 103.6.  HIs blood pressure plummeted and he was placed on levophed to bring it up to safe levels.  Unfortunately, on levophed he is not allowed to walk because of the risk of falling. With 103 fever, Josh did a couple mock fantasy football drafts. He is bad at doing nothing. His brain is always moving. Josh breezed through post transplant days +4 through +9, walking 3.5 miles a day, and although we expected a fall, we didn’t realize how awful that fall would be.

Yesterday Josh’s temperature hovered around a 104 degrees with a couple of respites and moments of lucidity when his temp when down to 101. HIs white blood cell count was 0, after temporarily rising the day before. At one point the nurse read a temperature of 107 degrees, scary, but I think it was a misread and his temp was actually 104.6. We were moved into the bone marrow transplant ICU in the evening and he was put in bed with an ice blanket. He was given granix shots to boost blood production in his bone marrow. The granix caused unbearable pain in his femur and hips (the two major marrow producers). I don’t think he slept for more than an hour last night.

Fevers are normal with bone marrow transplant patients. We have been told that 99% of people get fevers at some point during transplant. A couple nurses said that extremely high fevers 104-107 degrees are often signs of engraftment (where the body is accepting the new stem cells).  Young men getting bone marrow transplants are extremely susceptible to these spikes in temperature. We are thinking that Josh’s body went into overdrive to produce the stem cells for collection, so maybe this is what is happening with Josh’s fevers.

The other possible cause of the high fevers is an infection. He is being treated with antibiotics. He had a chest x-ray yesterday, which showed a little fluid and he will have a CT scan of his chest today.

The ICU room has big windows. We have one of our favorite nurses and Josh’s personal doctor who is an expert in Amyloidosis is doing rounds this weekend. I miraculously slept through the night on the cot next to Josh. The high fevers aren’t shocking to any of the staff, just terrifying to those of us that love Josh.

Although it is painful for all of us to be separated from the kids, they are well cared for. They were with my mom last night and will be with Bonnie tonight. Their days have been full with adventure camp (kayaking, mountain biking, rock climbing, stand up paddle boarding, hiking), friends, and fun. Our baby is with our wonderful nanny, who literally fell down from the stars to help me out these past couple of months. I hope we can get Josh home before August 22nd, when the girls start school, but most importantly I hope Josh starts feeling betters, his numbers come up, fevers go down, and these new stem cells bring a long chemo free life. I love him so much.

 

Living Life In Incomplete Sentences

ANC graph

Today Josh is six days post transplant. Last night he was up sick all night. He did well this morning and then had extreme abdominal cramping this afternoon. His white blood cell count was 24.  Josh and his dad drew a graph this evening of the progression of Josh’s ANC levels. He is pretty close to rock bottom, but the good news is from down there, there is no where to go but up. We hope his blood count rises quickly.

For Josh, there is the expected nausea, vomiting, diarrhea that he knew came with intense chemo therapy, but for him the worst part has been the loss of focus. He literally is trapped in a room and cannot focus on anything for more than five minutes. He gets a lot accomplished in five minute bursts, but he constantly must change positions and switch activities. Josh, who could win medals for watching stupid movies over and over for hours on end, has not sat through a single movie while trapped in a room on the transplant floor of PSL.

Wake-up. Sick. Get Medicine. Color. Pace. Draw Maze for kids. Dot-to-Dot. Sports Center. Write card to kids. Olympics. Nap. Walk. Sit. Eat. Play Yahtzee. Draw. Walk. Play Cribbage. Pace. Maze. Dot-to-Dot. Eat Soup. Walk. Rest.

Despite his inability to focus he has forced himself to walk 2 miles every day and he created this beautiful platypus maze for our middle daughter.

Palatypus maze

Nine days into the hospital stay, it still feels like we are living in an alternative universe. Before SCT (stem cell transplant), I worried about what after school activities I should sign my kids up for, I wasn’t cognizant of this reality. Truth, there are always people suffering and struggling on this planet. Truth you never know anyone’s story. These truths along with many others are burned into me. It still feels more science fiction than reality, an absolute surreal shift, plucked out of our privileged lives and placed on a foreign planet. We are stuck here until Josh’s ANC reaches 500, for at least another week.

Josh is working harder than he has ever worked not to get a promotion or an award, but to get back home. He is fighting for everything that I (we) have always taken for granted. When he gets home, it will mean everything.

This is painful. It sucks. I cry. I smile. I cry again. I smile. I cry. I love him. Love gives us super powers. I discovered this after birthing children, I’m seeing it again, we are super-human, not alien, but loving humans have heroic strength, which means when pushed we all have super powers.

THANKS FOR THE PRAYERS, VIBES, AND LOVE, PLEASE KEEP THEM COMING.

We keep on trucking, hopefully, out of the transplant ward soon.

XO

Justine

 

 

 

Post Stem Cell Transplant Day +3

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On August 2nd, Josh received six bags of new stem cells. The stem cells arrived to his room in this frozen canister and were injected through his central line. The stem cells are mixed with a chemical that smells like creamed corn. The smell is excreted through the breath and the skin. It is pungent and quite awful. We will never eat creamed corn again. The day of the stem cell transplant went smoothly, there can be side effects, but Josh felt sufficiently awful that he was drugged up and knocked out throughout most of the procedure. Josh felt miserable and although it was his new “birthday”it sucked.

On August 3rd, Josh’s neutrophils bumped up to 3,400. On August 4th, his neutrophils were 1,400, they will soon drop to 0. Neutrophils are a type of white blood cell. There are many types of white blood cells, whose purpose is to fight infections in our bodies. I have read that neutrophils are the most important type of white blood cell. A normal healthy person has a white blood cell count between 2,500-6,000.  When the neutrophil count drops below 1,000, it is called neutropenia, which means you are at serious risk of infection. In the next few days Josh’s neutrophils will drop to 0. He will remain in the hospital until his neutrophils rise between 500-1,000. Neutrophils correlate with energy, well-being, and general health. He will be bottoming out soon. It already sucks, but will get worse.

As his neutrophils drop and his symptoms increase it is hard for him to focus on activities for any length of time, which is frustrating for him. He spent three days finishing a maze for our oldest, but was determined to finish it.

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The past three mornings Josh awakes about 4am and vomits for a couple hours, the nurses and doctors try to get his symptoms under control through anti-nausea medication. He then is usually knocked out by the medicine and sleeps a couple of hours. We are hoping the strict regimen of multiple anti-nausea medicines throughout the day will keep his vomiting at bay. He has walked two miles every day since he has been in the hospital, which is pretty remarkable given the abdominal pain, nausea, and vomiting. Also, I haven’t witnessed much vomiting, it feels as if he holds it together while I’m around to not upset me and then vomits immediately after I leave or before I arrive. Bonnie, Jerry, and I rotate shifts. Typically I am there all day until I pick the girls up from camp and then come home have dinner with the kids, put them to bed, and return to the hospital for a couple of hours. Next week I will be there 9-5pm, and I will sleep there over the weekend.

It is hard to keep spirits high when you feel worse than you ever felt and you know the worst is yet to come. But Josh is convinced he will keep walking, keep showering, keep drawing mazes, playing games, and eventually his blood counts will rebound. If he has an ounce of energy he sits in a chair rather than lying in bed.

Josh is the best. He sends home gifts and cards to the kids every day.

Words to describe our past couple of weeks and then I’m going to sleep.

Stranger Things (great Netflix show – Xfiles meets Stand By Me), Yahtzee, step counts, laps through the halls, nurses, a koala maze, FaceTime, dot-to-dot, bananagrams, soup, hospital food, FRIENDS, kindness, hope, heart break, tears, hospital bed cuddles, zombie eye (hemoraged eye from vomiting), rock climbing camp, adventure camp, rock star nanny, visits from friends from across the country, family, best friend who sat in the chair with my girls as they fell asleep, stem cells, sci-fi, crazy, surreal, best friends, fluorescent lights, cream of corn, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, RESILIENCE.

Our people have cradled us in love and I feel loved by people from across the country and different ages and stages. A strange term, but the image of me cradled literally popped in my head as I drove to the hospital this morning. We are such homebodies, I worried if we had people other than each other and we have people, oodles of them. Who knew two hermits had so many friends. I love you all.

I can’t wait for my family to be under the same roof. It sucks for him because he feels awful, but I feel happy if he is feeling okay and I can curl up next to him in his hospital bed watching the iPad and gossiping about life even if it smells like nasty corn, I’m in a gown, and can’t breathe fresh air. For me home is where Josh is, he is my home and I’m happy when I’m with him, even in solitary confinement. I’m so lucky to have a husband that has the power to make me happy in prison. The kids are my home too, which leaves me split in two. Currently, our home is a bit broken, my heart is a bit broken (all of our hearts are) since we are split in multiple places and the kids and Josh can’t be under the same roof.

The babies and I lit candles tonight and asked that Josh feel better and come home soon. We miss him so much in our physical home, but I will see him first thing in the morning.

THANKS FOR THE LOVE, I AM GRATEFUL. XO

 

 

Stem Cell Update

In life and medicine Josh likes to use analogies. He can find an analogy for anything. Typically sports analogies to describe a patient’s illness or treatment, maybe an analogy to express how corporate medicine needs to change. When he tells me these analogies, I might roll my eyes, I don’t always get them. Many people do and they endear him to patients, sports lovers, and colleagues. But the first night we checked into the hospital, Josh was perplexed,”Babe, I can’t even come up with a good analogy for this, I mean solitary confinement, but that doesn’t even cover it.”

Driving to the hospital, I came up with an analogy. A little dramatic, but not too far off the ball. After two days of chemo and steroids, all I could think of were the torture scenes from the TV show 24, where Jack Bauer (played by Keifer Sutherland) is a C.I.A operative. He is the subject and perpetrator of numerous torture scenes throughout the shows run. In these scenes the tortured individual is locked in a dark room. Josh has a big window with lots of light, but the differences end there. The tortured loses track of day and night, the month, day, it is lost immediately. He is hooked up to machines and tortured until the brink of death and then slowly nursed back to relative health only to be hooked up to the machine again and brought down once more. If he breaks out of his room, then he is confronted with a maze of hallways and sterile artificial light. People approach him in yellow gowns, masks, and blue gloves. It is foreign, time, place, routine and life as you know it disappear.

The above analogy is how I feel watching Josh battle through this process. For the past two days Josh was fed a mix of toxic chemo and steroids via the central line in his chest. The steroids are supposed to counter the awful side effects of chemo. Instead the steroids caused extreme abdominal discomfort, the nurses give him drugs to ameliorate the discomfort and those drugs create more side effects. A constant battle of remedying side effects with drugs that create more side effects.

Josh is brave and fighting through this madness well, however, it is disheartening to know the worst is yet to come. He Facetimes with the kids and they love to see his smiling face. Each day he walked a mile around the hallways. He amazes me daily with his fight, charm, and bravery.

I hesitated sharing the torture analogy because other patients may read this who are about to embark on their own stem cell journey. I don’t want to scare people because Josh will get through it and so will many others. It is amazing what we, humans, are capable of. However, Josh has been continuously frustrated by doctors and nurses who glaze over the side effects of painful procedures. For example, the bone marrow biopsy, “it’s not that bad, you don’t need sedation”, followed by extreme pain as they drill through his hip. The central line placement, “you will just feel mild discomfort” – really a plastic tube is being inserted throughout his chest… Or, we just harvested 40 million stem cells from your body,  but”no biggie, shouldn’t be a problem.” Optimism is great, but if you gloss over side effects, then patients start worrying that something is wrong with them. Why am I in pain, when I should only be feeling mild discomfort? Probably because the doctor who told you there would be mild discomfort has never had a central line placed into their chest. You never entirely know anything until it happens to you.

Josh is an amazing doctor. He is an excellent diagnostician whose patients adore him. He is borderline brilliant with bedside manner, which is hard combination to find. I can only imagine the excellence he will achieve as a physician after having the experience of being a patient in such a traumatic and profound way. He laughed at himself counseling his patients regarding their children prior to having his own children. Laughable, text books cannot prepare you for a colicky baby or the fear of an infant spiking a high fever. The human element is not conveyed in a text book. Similarly you cannot fully understand suffering from a chronic illness until you suffer a chronic illness.

Josh receives his new stem cells tomorrow morning. His new “rebirthday” will be August 2nd, the day before my grandfather Quigg Newton’s birthday. Quigg was a leader, life long learner, loyal, and dedicated to providing a good life for his family. Josh is all those things and so much more. Josh adored Quigg (and I think the feeling was mutual).

Please keep the prayers/energy/jedi force coming that these stem cells bring a future of health and happiness for Josh and our family.

Thank you for all the love and support.

Love,

Justine

P.S.

I’m more of a sharer than Josh, so this blog may be “super fajitas” for him. I like to document this journey because I want friends, family, the world to know – the rockstar warrior superstar that my husband is. I am immensely proud of him.

AL AMYLOIDOSIS SUCKS

BACKGROUND:

For those who do not know, my husband Josh was diagnosed with AL Amyloidosis in April 2016. AL Amyloidosis is a rare blood disease where misfolding plasma cells in the bone marrow produce light chains in the blood called amyloid that attach to organs and cause tissue damage, (by no means an accurate description). There are less than 4,000 new diagnosed cases of Amyloidosis in the United States each year, which makes this an extremely rare disease. Amyloidosis is most closely related to Multiple Myeloma, which is a rare form of leukemia. As such, many treatments for the two diseases are the same. Most people diagnosed with Amyloidosis are in their 60s, but Josh unluckily discovered he had Amyloidosis at 37-years-old.

As a physician, Josh noticed swelling in his ankles tested himself to make sure he didn’t have a blood clot then tested his urine and blood and realized he had nephrotic syndrome. He went to a nephrologist who then ordered a kidney biopsy, which showed Amyloidosis. He then underwent a bone marrow biopsy, which also came back positive for Amyloidosis.

When Josh was diagnosed with Amyloidosis, I didn’t know what it was and immediately googled it. Don’t do this, a google search reports that patients diagnosed with Amyloidosis have 1-2 years to live. SHOCK! WHAT? HOW? WHY? I CAN’T LOSE JOSH! I cried for two weeks straight. I couldn’t wrap my head around losing Josh, I still can’t, and luckily two doctors assured me that I don’t have to. Two doctors assured me that Josh will live a long life with this disease. He will be around to see his children get married and there may be a cure in his lifetime.

“Why did young healthy Josh get Amyloidosis?” I asked Dr. Smith and myself a thousand times. “Is it just like randomly getting struck with cancer without a family history?”

Dr. Smith responded, “One out of three people will get cancer in their lifetime.”I don’t know the exact statistical chance to get Amyloidosis at 37, but pretty much Josh won the rare disease lottery. Although this is all bad news, the good news is with respect to this disease Josh also won the lottery, right now it is only affecting his kidneys (not the heart, liver, muscles, or nerves), which is amazing. He has little kidney damage and he is in amazing shape.

Due to his relative health, Josh opted for the most aggressive form of treatment to achieve long term remission and will be having a stem cell transplant. A stem cell transplant is a bone marrow transplant, except in his case they will be using his own stem cells. July 25th and July 26th doctors collected close to twenty million of Josh’s stem cells, which were then frozen at -130 celsius. He will be admitted to the hospital on July 30th and for two days will be blasted with high dose chemotherapy (melphalan) in order to wipe out his entire blood system. He will rest a day, and then be reinjected with his newly cleansed stem cells. The day of transplant is literally deemed his rebirthday. Every immunity he has acquired in the last 38 years will be completely wiped clean. He literally will be put on an infant baby’s vaccination schedule once his body begins to recover.

Josh will be in the hospital for close to three weeks, until he is deemed safe to reenter the world. He will be able to see me and adult friends and family, but the children are not allowed to visit him because of the risk of infection. He is heartbroken to be separated from the kids. He will be out of work for 2-3 months, which is sad because he just started a new job that he loves. We are focusing on the positive, looking at three months as a blip, like maternity leave, which women take all the time. (FYI, paid medical leave readers is not only for new mothers).

Originally, he was supposed to be admitted to the hospital on July 18th, but because of a lab mishap with Josh’s stem cells the transplant was delayed two weeks. We were upset about the delay and devastated because Josh was put through a brutal collection of stem cells twice, 40 million stem cells were taken within a two week period. The night of his second collection, I thought he might need a blood transfusion, he was sick, fatigued, cold (shut off the air conditioning), but a day of rest and he rebounded. Josh is a champ.

Due to the upsetting delay, we had more day dates than we have had since having children seven years ago. One of Josh’s best friends visited from Pittsburgh and spent the weekend with him. On Monday and Tuesday Josh gave 20 million stem cells, Wednesday we had a relaxing Boulder date and went shopping on Pearl Street, Thursday we played 18 holes of golf, Friday we went for a long hike near Chatauqua, and Saturday Josh checks in the hospital for his first dose of chemo therapy.

Friday night we had a Star Wars pajama party with the kids where they stayed up late, ate Chinese Food, S’mores, ice cream, candy, and watched movies. (Thank you, Sarah for the delicious ice cream). Josh’s last night of fun with the kiddos for a few weeks, he is the best dad.

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Today we checked into the hospital. It was surreal, driving to the hospital on a sunny day, young families shopping at the farmer’s market and riding their bikes on the bike path while  Josh will be stuck inside the hospital for one month. We checked in thinking we could get a cart and together go back to the car to get his things. Nope, once Josh entered his room, he couldn’t leave the hallway. I took the cart back to the car, called my twin, and cried. I can’t believe Josh will be in this small room for almost a month. I can’t believe he has to fight this shitty disease. I can’t believe small tragedies go on around us every day as the world keeps circling and the sun keeps shining.

Yesterday, I was brainstorming what to write as an update. We hiked miles with our dog, our shoulders burned by the sun, our lungs expanding to get us up the steep hills we have climbed so many times. I felt blessed. We are blessed in love, family, and friendships.

Today as we left our home, my five-year-old sobbing and her two-year-old brother imitating her screams. I felt heartbroken. This is officially the hardest day of my life thus far. Healthy Josh driving our car to the hospital to be blasted with toxic chemo and taken to the brink of death to be brought back to life with his own stem cells. It feels torturous. It feels unfair.

I wish, pray, hope for remission. I’m wishing that Josh can come home soon. I hope he will breeze through chemo and this seemingly endless stay in an artificially lit sterile room. I pray he stays sane. I pray my children feel loved and secure. I pray for a cure. It seems desperate and pitiful, but I pray and hope that everyone that has ever known or cared about me, Josh, his family, or my children, send us prayers. I want to believe in the power of prayer, healing thoughts, and love. Josh is private, but I want to rally all the love I can muster and direct it at him. Family, friends, world, we  need some magic sent in our direction.

The first round of chemo starts at 4pm, until then we will be playing Yahtzee, reading, and walking the halls, imagining ourselves in a claustrophobic train car heading through Europe to eat pasta and drink wine in colorful Positano, Italy.

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For the next few months, I will keep family and friends updated on the blog. We appreciate all the friends and family who have rallied around us during this tough time – meals, ice cream, wine, texts, phone calls, emails, cards, have all been greatly appreciated. It is always nice to know people are thinking of us, so never second guess texting, calling, or emailing. We love it. Thank you, thank you, thank you…