November Update

November was the big month. Since Josh’s stem cell transplant in August, we collectively held our breath for November when we would receive the results. Did the stem cell transplant work? In our heads, we felt Josh put in the hard work going through a brutal stem cell transplant, he is young, healthy, and we believed that it must work. You put in the work you get rewarded, right?

It took me a while to share these results because in my dreams I was supposed to be sharing different results this month. While it’s not the best case scenario, it is also not the worst case scenario. Thus far, Josh has achieved a very good partial response. Josh’s numbers improved substantially, the light chains have continuously gone down in his blood and the plasma cells have dissipated in his bone marrow, but unfortunately, there is still evidence of disease in his body.

What does this mean?

We wait another two to three months, and hope his numbers continue to drop into the normal range. In two months, Josh’s bone marrow will be biopsied again and hopefully there will be no evidence of disease. Josh’s doctor is optimistic that this will be the case since Josh feels good and looks good. It just takes time. If in two to three months, there is evidence of disease, Josh will begin chemo treatments. Chemo isn’t fun, but we have been told that Josh can continue to work if he undergoes this chemo and the chemo would stop immediately when his numbers reached a normal range.

We continue to pray that his numbers reach a normal range w/out chemo and Josh achieves a long term remission. We hope this happens sooner rather than later. We continue to pray for a cure. I appreciate all the prayers, texts, and phone calls, even when we don’t respond to them. Sometimes it’s hard to reply in text, when we continue to not have clear answers.

In all honesty, Thanksgiving was tricky this year. I have to say, 2016 was the worst year of my life. It has been a heartbreaking year for so many people. I am unbelievably thankful for Josh, my kids, my family, and friends, but I’m disappointed that we can’t be done with Amyloidosis. I’m disappointed by the hatred and racism in the world. It feels uncertain and hard. I’m saddened that sometimes you do your best, but you still don’t get the results you dream of.

What do we do?

We move forward through the uncertainty. We teach our kids kindness and put kindness out into the world every day. We work hard to make our communities better. We work hard to address the injustices that exist in society. We scream out against injustice when we see it, no matter how uncomfortable it makes us to do so. We work hard to break out of the bubble of our little communities and volunteer/work to improve lives in the broader community/world. For me, I feel like I need to dust off my law degree and volunteer to protect those who are the most vulnerable – immigrants and minorities.

I am thankful. We are thankful.

Thank you to everyone who continues to support us on this journey.


My Husband is Two Months Old


Our days are busy. There is no spa like serenity in the Solot household. School, first days, back to school nights, the tooth fairy, potty training, a visit from the poopy fairy who leaves a matchbox car if the poop actually goes into the potty, a 13-year-old incontinent Basset Hound, big boy bed, bee fears, school fears, nightmares, toddler temper tantrums, five-year-old temper tantrums, punches, kicks, pinching, and screaming, we are one loud and frenetic family. With all the attention seeking shenanigans, it is hard to remember that I’m married to the most vulnerable person in the household.

On Sunday, October 2nd, Josh will be two months old. Today he went back to work. He often cooks dinner, cleans, and helps with pick-ups. With three little kids, all adult hands on deck are often needed. It is easy to forget that Josh is still healing. He has rebounded quicker than expected. His white blood cells and red cells have jumped up, his nausea waves are less frequent, but we still need the evil amyloid producing light chains to return to normal levels. We need to patiently wait to see if his stem cell transplant worked. I’m not very good at the patiently waiting part. I want to know that he is all better.

With normal schedules emerging, my brain likes to trick me into thinking the amyloidosis is gone and we can close the chapter on last summer’s nightmare. Unfortunately, that is not how amyloid works. I like guarantees, probabilities, control, and explanations. This disease lacks most of those things. Life lacks those things too, this is hard for my type-A, rule following, control freak brain to grasp.  We must patiently wait and see while Josh heals further. He appears strong and healthy, but he is only two-months-old and we need the pesky light chains to decrease in his blood.

Tonight, September 30th, there is a new moon. The second new moon of the month, which makes it a black moon. I am not an astrologer, but right now, I am grappling for some magic. Google says this new moom presents the chance to begin anew and move forward into the next phase. In fact, “Bustle” says this new moon is “jam packed with positive vibes, particularly for Libras.” Coincidentally, I am a Libra, so is my twin sister, and Josh’s mother. WE ALL LOVE JOSH, so I’m sure they will join me in sending any new moon magic towards healing him.

Friends reading this, those who I know and those who I don’t. I know Josh is walking around town handsome, hairless, and strong, but he still needs all the magic juju you can muster sent his way. Please pray/vibe/send energy with me and our family for a complete hematological response. I know we have no control over whether this stem cell transplant worked, but I would love to use the power of magical thinking to encourage Josh’s light chains to plummet.

I don’t want to jinx myself by writing, hoping, or even thinking of what could be or the  possibility of  being devastated by more treatment, because we will fight what we have to and I know many people have to. But friends, I’m wishing for a full recovery, we would love a respite from chemo, hospitals, and infusion centers. Fresh mountain air, ski trips, hikes, movies, chili, soups, take-out, hot chocolate, work, routine, and love sound fantastic.

On November 2nd, Josh has his second bone marrow biopsy. On November 22nd, we get the results of all this craziness. PLEASE KEEP US IN YOUR THOUGHTS!!!! Hopefully soon, I can tell you to pass your positive thoughts elsewhere. I feel slightly greedy and selfish asking for prayers, because so many people need them and I know my family is extremely lucky in the grand scheme of things and I’m reminded of our fortune daily. But I know Josh isn’t asking for any, so I am seeking magic on his behalf. As my friend Laurel says, “prayers aren’t finite, keep asking for them.” (She may have been talking about friends bringing meals, but same principle).

Thanks for the love everyone. Josh is truly an amazing human being and I am so lucky to have his hand to hold onto in this crazy world.



(Thank you Julie Harris for all the beautiful photos you took of our crazy family).










Josh and Sam 7th bdayJosh rebounded, on Thursday, August 2nd, he came home from the hospital, a couple days after he left the ICU. He was home for the first day of 2nd grade, kindergarten, and for our oldest’s 7th birthday. We are thrilled. His blood counts rise each doctor’s visit, which means the new marrow (stem cells) are working. He left the hospital weighing 200lbs because of edema in his abdomen and legs. On August 23rd, (four days later), he weighed 170lbs and today when he left for his appointment I could see his skinny ankles poking out of his high top sneakers.

The transition home post transplant has been difficult, but gets easier each day. To some extent, I was looking at the end goal as Josh home. I felt that when we walked through the doorway some semblance of normalcy would appear. I forgot that Josh left the ICU two days prior and was still sick, extremely sick.

No one discusses chemo brain, it feels taboo. In my head, I thought it might be like pregnancy brain, make you spacey. Chemo brain is officially worse than pregnancy brain. I still don’t know what chemo brain means to anyone other than my family because no one discusses it. Post stem cell transplant brain is definitely more than fuzzy. My brain was fuzzy, but Josh was a bit crazy. The first couple of days home, Josh was loopy, whether from chemo brain, fatigue, or medications, he struggled staying awake. He fell asleep speaking, texting, or watching television, and then woke up hallucinating and speaking gibberish. This was disconcerting, was this it? Was he going to improve? Did he have chemo brain? I don’t know.

Luckily, Josh’s brain came back. It came back quickly though he remains easily fatigued. Despite symptoms, he eliminated all medications that made his thinking fuzzy or unclear. Josh wants his life back. He wants his independence back. He walks every day and forces himself to eat despite everything tasting metallic, nausea, and stomach issues. He plays Rat-A-Tat-Cat (a card game) with the kids and eats dinners with us every night. He does this despite feeling awful. His central line will be removed Thursday, which is huge. The end of daily heparin flushes, transfusions, and hopefully chemo. He is doing everything he can to return to work and life. All we can do is be patient and let his body recover.

Since Josh is lucid again. His story is back to being his own and I’m not going to continue sharing it on the blog. He can start texting, emailing, and returning phone calls on his own. Please keep the prayers for remission coming. On November 2nd (Day 90), we find out whether the stem cell transplant was a successful. Today is Day 27. We must be patient, wait, and recover. We believe he will achieve a complete response. His body responded amazing to all the torture it has been put through and I believe it will keep rocking it.

Also, the above picture is of post stem cell transplant Josh. Who looks that good after a stem cell transplant? My amazing, loving, beautiful, and brilliant husband. I continue to be a super lucky woman.

Thank you for all the dinners, gifts, carpools, notes, emails, and prayers. We feel so loved by our community and thankful for everyone who has reached out to tell us they are thinking of us. We never knew we had so many people and we feel so lucky that we do.


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.


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.


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.


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