Miracle, please.

It's past midnight and I'm sitting at Naan n' Curry down the street from UCSF trying to piece together an update. I'm eating a veg thali and watching the flicker of a Bollywood film out the corner of my eye and imagining myself back in India.  Earlier this week I was dreaming of taking the girls to a rainbow gathering in the Republic of Georgia. Fiona asks me daily when we can go back to Thailand. These days I find myself highly tempted toward escapism, wanting to be anywhere but here. 

It's cold and sprinkling outside and it took me what felt like ten hours to find my car, wandering up and down the street shivering with no jacket. My heart feels cold like the night, disconnected from the pain of it all. It's hard to write an update when I'm feeling like a bystander myself, watching the colors continually change from superhuman strength to pain and powerlessness, from keen engineer of survival to a madman speaking dillusional chatter, from hopeful warrior to a helpless shivering man I can hardly recognize, all this and back again, over and over and over. 

The staph infection is gone, but it has now been replaced by a lactobacillus infection. They've switched antibiotics to treat it. Though blood infections sound scary, they can be knocked out pretty effectively if treated early and appropriately. 

Ian has ejected from all basil opiates, meaning he no longer has a continuous flow of narcotics through IV. He can still push a button if he needs it, but he says it doesn't help much anyway. I really wish the occasional dillusional talk went way with the opiates, though. I think it could just be lack of sleep over the past few months catching up with him. 

Now that his pain is under control, we have a beautiful new goal: getting Ian home and out of the hospital. It hurts to think about because I don't know if it will ever be possible with Ian's desire for continued transfusions, but it's helpful to have a clear goal to work towards.  

Our main steps toward that goal are getting him back to eating food (this is the tricky part which includes his gut healing enough to handle food and no longer needing the NG tube siphoning fluid from his stomach) and getting him strong enough to walk the 3 flights of stairs between the parking lot and entrance to our home. Each day he thinks the intestinal infection is a little better, so we are hoping at some point he can pursue food again. This is quite elusive though, and the doctors aren't sure he will ever be able to eat again. We've learned that Ian tends to far surpass any doctor's expectations, however, so the goal still stands regardless of the many skeptical unknowns in how to achieve it. 

Ian is now up to walking 3 laps around the floor daily, and he's determined to slowly increase it. The other day, a nurse even took him for a walk outside to get his first breath of fresh air in nearly two months. 

This picture feels deceiving, though. In a sense it feels like he's come back to life after being on his deathbed. There were many nights I watched his every breath not knowing if it would be his last.  Things have changed so much since then, but in other more significant ways nothing has changed. Keeping it all in perspective, he's still dying of leukemia with his bone marrow and blood packed with only blasts. He's still surviving on daily transfusions and IV nutrition. His fevers have also ramped up with a vengeance this past week, so he spends half his day hiding under the blankets or cooling off with cold packs as he rides the fever wave with every 6 hour dose of Tylenol. It's rough. 

Oh it's so rough. I'm feeling exhausted from driving back and forth to UCSF and watching him suffer so long.  The girls are also having more meltdowns than usual, requiring more than usual patience and wisdom from their tired Mama. 

We need prayers. So many prayers. We need the wings of heaven to scoop us under and warm us with Divine comfort. I need my heart to melt again, I need to be able to cry again and again and not grow cold on this painfully long journey. And we really need healing. Healing for Ian's intestines so he can eat again and come home, healing for the leukemia so he can make his own blood and have an immune system again. There's really no hope at all for Ian's body besides a big fat miracle. 

Update

What a week. 

Ian's beautiful mama just returned to Arizona after weeks of being by his side. She will be dearly missed. We are so thankful for the precious time we had with her and for the many, many nights she stayed up guarding Ian's life and comfort like only a mom can do ❤️

 

Ian's morphine dose kept increasing to cover his pain, and with it came increasing loopiness and dillusional mumbling and loud, random morphine voices tormenting his head. They finally switched him to a different pain med and he became more and more lucid as the morphine drained from his system. We are so thankful to have Ian's mind closer to being back in working order again. 

Ian's intestines have also surprisingly come back to life this past week and things are moving once again. He has been vomiting a lot ever since, however, and getting in and out of the bedside commode is a lot of painful labor for someone whose been bedridden for weeks. His belly has now returned to normal size and he can sit and stand upright. In spite of great pain, he has been working hard to strengthen and re-condition his body with yoga/stretching exercises. He even walked two laps around the floor yesterday, twice! 

If you had seen him try to walk just a few days ago, you would understand the triumph. He tried walking maybe ten feet down the hall and back a couple times, but his swollen belly required him to hunch over like an elderly man and his bedridden body trembled as it labored to take each step. The nurse was so nervous, she didn't think he should try it again without a walker. What a contrast to this picture from yesterday:

Look at that straight back and smile hiding under the mask! 

The girls and I have had our ups and downs. 

Asha was thrilled to find a SIX leaf clover the other day. She has mostly been her sweet joyful self, obsessed with cats and nature and reading and correcting her little sister and an intense longing to connect with people and play with friends. We are back into some semblance of rhythm doing homeschool in the mornings and visiting Ian in the afternoons/evenings. 

Fiona has been my little Eeyore, finding deep sadness in every bump and bruise and imperfect drawing and unfulfilled desire. She misses friends and playgrounds and her Sunday school class and the "old days when Abba wasn't sick." 

She has also come out of her shell of shyness and has learned the joy of sweetly saying hello and brightening the faces of random strangers as we walk the hospital hallways and ride the hospital elevators. She basks in the adoration of her Abba and the nurses and doctors on Ian's floor. There's so much love there, she feels it and shines brighter in it. 

Though Ian's bowels are moving and the distension in his stomach is much better, he still can't eat and continues to be in severe pain from the typhlitis. Pooping hasn't really helped the pain at all, and may be adding to it. Deep sleep comes rarely and is often quickly interrupted by pain or nurses. They also recently found staph infection in his blood. All in all, he's still unltra vulnerable and in extreme pain most of the time. The doctors offered to stop TPN (IV nutrition) today, moving him to the level of hospice comfort care, but Ian was horrified at the thought. 

It's amazing he's still alive and fighting with such stamina. He refuses to give up hope of walking out of that hospital.  I must confess, I've been ready to throw in the towel several times this week. There are times I feel so overwhelmed and exhausted trying to be there for everyone. Walking blindfolded on this seemingly endless line of unknown tomorrows feels way too scary, way too out of my control. But maybe that is part of my training, learning to let go of the illusion of control and lean into the tension of trust. 

Although it's entirely possible, I'm no longer as worried about Ian slipping away overnight. This guy's got a lot of fight left in him. The Lord clearly isn't finished with him yet...

Thank you for your prayers. Please keep them flowing. 

The Week in Pictures

We are still trekking on, day by day. 

Ian's mom is here taking turns with me so that one of us is by his side 24/7. It is a full time job for Ian trying to stay on top of the pain and constantly adjusting his body to find some semblance of comfort and avoiding bed sores. He can no longer walk or even stand more than the fraction of a minute it takes to quickly change his bedding. Sitting up is very difficult too, due to his painfully bloated belly. His intestines are still blocked and paralyzed, leaving everything to collect and swell in his abdominal area. They inserted an NG tube through his nose and into his stomach to drain the extra fluid that builds up. It seems to be helping a bit, siphoning off a couple liters per day.  He hasn't eaten a meal in weeks, but he savors every sip of water and sucking on ice chips. The abscess is still there, but it has not burst. 

Everyone is amazed Ian is still here with us. He's very aware of his body and is able to adjust his depth of breathing in order to minimize pain. He is engineering all kinds of tricks to make himself more comfortable. He is also on increasing amounts of morphine and Demerol, but he's very careful and systematic to preserve as much of his brain in the process of managing the pain. 

Now that it seems Ian may be around a while longer, I'm trying to find a new balance of time/energy with both Ian and the girls. Asha seems to be fine, but little Fiona is missing mama and having a lot of sadness and emotional/social regression. My new goal is to spend every other night with the girls and keep them with me here at the hospital during the day as much as possible. I feel it is important for them to be with Ian and see him with their own little eyes as things develop, to help them process the reality of what's going on. I also feel like I want to be there for them as much as possible during this time, while their little hearts are processing it all. It's not an easy balance to find, but having Ian's mom here has been a life saver. Dear friends have also come for play dates in the hospital family room and brought food and taken the girls for hikes in the woods and to their home for sleepovers. We are finding our way through this storm, day by day. 

Here are some pictures to give you a window into our lives this past week:

❤️ Valentine's Day Selfie: 

Asha thought these flowers outside the hospital were so beautiful, she wanted to take a picture of them for Ian. (He can't have any living plants in his room due to no immune system.) 

We like to let the girls spend a little time with Ian every day. The girls were quiet as mice here, staying occupied while Ian slept. We were all impressed with Fiona's focus coloring her mandala for Abba. 

The family room here has boxes and boxes of puzzle pieces from at least 10 different sets all mixed together. We had no picture to go by, only clues of size and color and texture. The girls and I immersed ourselves in puzzle madness one day and were quite proud of ourselves for this accomplishment:

Asha and Fiona on a hike this morning in Marin:

The warrior himself, smiling:

This guy is amazing, and he is proof of amazing grace in the midst of suffering. He throws these blissful, heavenly, glorious smiles at us throughout each day. They pierce my heart through and give me strength for the next round of moments...

Moment by Moment

Each day Ian is sliding further downhill.

Yesterday he was able to carry a conversation or two. Today, not so much. He pulled a muscle in his rib early this morning and it has caused excruciating pain. He is on oxygen and a lot of narcotics. His belly and feet are so bloated it hurts me to look at them, but the rest of his body is getting thinner and bonier. Still, while waiting to take a muscle relaxer a few minutes ago he paused for a minute or two with a cup of water in one hand and the pill vial in the other and said with a blissful smile "I'm just enjoying the moment."

A friend recently sent us this perfect quote: 

 "To live in the past and future is easy. To live in the present is like threading a needle."  - Walker Percy

We are threading the needle here moment by moment. 

Update

Ian said to me this morning with a peacefully glowing smile, "Well, if Jesus takes me Home then that will be fantastic." Life has not been easy for him lately, but he is still very much alive and carrying on moment to moment. Doctors occasionally remind us of the standing offer for him to give up the steady flow of transfusions and antibiotics in the hospital and just go home, but that doesn't feel right to us. We are waiting on the Lord and His timing, and we are still praying for a miracle of healing. 

The mystery fevers continue unabated. The abscess in Ian's colon is still contained, meaning it hasn't burst and set off the countdown to eternity. The infection as a whole seems to be getting worse, though. The inflammation has at least partially blocked his intestines and his belly is still very swollen and tender. He hasn't been able to eat anything the last four days and is quickly losing weight and energy. They started him on IV nutrition and lipids last night.

Chinua has been here for several weeks now, a faithful friend by Ian's side. He has probably spent half his nights here in the hospital chair - a contraption that transforms into something similar to but not quite like a bed. It's been an amazing gift to me, knowing Ian is in good hands while I'm away with the girls.  

Tomorrow he flies back to his precious wife and kids. Just to give a tiny window into how amazing his wife Rachel is, they had a family trip to India scheduled this month and she made the trip as a single mom with their five kids. All for the sacrifice of love and friendship, so that Chinua could be here to support us. I have often melted into tears of gratitude and amazement at how they as a family have served us in this season. 

Please pray for Fiona as she isn't doing so well. She was up with my mom in the middle of the night screaming with growing pains and wanting me to be there to comfort her. I was with Ian, on the phone trying to calm her down, watching him writhe in fevered agony while Fiona screamed. She isn't eating much and is losing weight. She misses me, and on a deeper level she misses Ian.  I've tried taking her on special one-on-one hikes through the forest and playing at the beach until the sun sets. These sweet moments of connection can't seem to heal the greater wound and instability of our lives right now, though. 

It's been a rough day, full of heavy hearted sighs. This is a treacherous road with endless steep curves that make seeing around the corner impossible. Some days I just want to fold up into a fetal ball and cry. I don't want to open my eyes to the cliffs below or the cliffs above, I just want to sleep until this nightmare is over. But I know that after some tears and rest, I will have renewed strength to open my eyes again and keep climbing - just one step at a time. 

Thank you for your continued thoughts and prayers. 

Insatiable Hope

It's amazing the extreme shifts in perspective and emotions on this intense tightrope roller coaster we are on. Today I'm feeling miraculously peaceful and hopeful and balanced, taking it step by step by step. Thank you all for the flood of prayers, we are feeling them full power. 

Wednesday was a heavy day. After receiving news that the abscess could burst at any time leaving only hours to live, Ian said good bye to each of the girls individually through a storm of grief and tears. Fiona tried to hide in my arms, crying but looking away, shielding her heart from Ian and the painful reality of losing her Abba. Asha, on the other hand, would have stayed by Ian's side all day if she could. They prayed together, cried together, and just laid down in the bed next to each other and soaked in the sadness together.  

After the storm of intense grieving on Wednesday, it felt like the sun came out and double rainbows appeared yesterday. Ian's situation hasn't changed. There is still just a thin skin on the growing abscess veiling his transition into the birth pangs of new life, but today he is still here with us. As little Fiona exclaimed with happy surprise when she said goodbye to Ian Wednesday night after hours of playing with aunties in the waiting room, "Abba's not dead yet!" He is still making us smile and playfully harassing the nurses. He is still creatively engineering new culinary creations from the same hospital menu he's lived off of daily for a combined total of about 8 months. He is still winning Asha at every game of connect four. He is still full of life right now and so we are grateful. 

We are being further trained in the art of not worrying about tomorrow. Sometimes I like to imagine us as monks, as hermits, as sadhus, and the hospital room our cave of spiritual discipline and inner development. Though it isn't easy, it is rich and beautiful and nourishing to our souls. There are jewels and precious metals being forged in our hearts in this fire. Sometimes it is hard to separate the joy and suffering because we are finding ourselves closer to Jesus here, the arrows of our hearts more centered on the True Center of everything in the universe. 

We have no idea how much time we will have. Ian is trying to be extra gentle on his inflamed colon, to prevent it from bursting. Some moments his mouth is so dry and his body so weak and his belly so tender that I feel we are so close the end. I have flashbacks of my dad's final days with blood cancer and see so many similarities. Other times he seems so strong and vibrant that I can't imagine anything taking him out! 

But this is how it is for all of us, we never know how many days we have. We must live a day at a time and seek to truly live each one of them. We are still praying and hoping for an 11th hour miracle, but if the time comes for the abscess to burst we will walk that road moment by moment. Like suffering through labor, we will lean into the Lord and breath each breath given as we wait for the One who gave Ian life in this broken world and body to rebirth him into a far better and eternal one. No matter what, if the eyes of our hearts are open, we are at peace and full of hope. 

Thank you so much for your prayers. 

Quick update

A doctor just came in and said his latest CT scan shows the perforation and abscess is growing. It is in danger of bursting any time. His timeline is now tilting toward hours to days. We are staying by his side as much as possible.

More Heavy News

Life has been a daily fight for survival around here, but Ian is quite a warrior. He is so very weak and the constant high fevers continue to lead him on a roller coaster of shivering chills and burning heat, night and day. He has a post nasal drip that makes him vomit and have to be super aware of sleeping positions and coughing up mucus to make sure he doesn't get pneumonia. They don't expect the cdiff to clear up in his neutropenic condition. 

On top of all this, we also just got news yesterday morning that there is a perforation and possible abscess in the inflamed area of Ian's intestines (where the typhlitis is). This active and growing infection disqualifies him from any further clinical trial treatment and we are now being directed toward palliative care. 

We are not sure what this will look like as he requires cross matched blood transfusions daily as well as a host of IV antibiotics and antifungals. These things make palliative care at home very difficult. We aren't being forced to make any decisions right now, but we are having to face some very heavy options. As always, we just need to take it one day at a time. 

There have been a lot more tears since this news, a lot more leaning into the side of grief. We haven't let go of hope yet, not by a long shot. Ian is a fierce fighter! But we are more and more drawn to surrender. 

I cornered the doctor yesterday to ask her some blunt questions about what to expect and she said his time frame is likely to be counted in days or weeks, but not months. There is also concern about a possible treatment-resistant fungal infection in his colon, which would tilt the timeline toward days rather than weeks. 

I'm trying to prepare the girls for the worst. They saw me weeping in my mom's arms after I heard the latest news. I told them, yet again, that Abba is not doing well. Asha's eyes got big and round as she cringed and sighed a sunken "oh no." Still, I get the sense that they have grown used to these disclosures and don't take them too very seriously.  

Please pray for us, and especially for Ian as he fights valiantly this intense battle that never lets up. 

Update

Updates are hard to write these days. It's continued to be a long, rough road. Constant high fevers persist, regardless of how often or high a dose of Tylenol Ian takes. His stomach is tender and nauseous, though the latest CT scan didn't show the typhlitis getting any worse. These fevers are still a miserable mystery.  

We got another low blow last night with news that Ian was diagnosed with a recurrence of cdiff, his absolute arch enemy in the hospital. When you're hiding in a fevered cave under a pile of blankets, the last thing you want is to have to run to the toilet night and day. Cdiff and constant high fevers are a miserable combination. He has been able to kick cdiff within 36 hours in the past, so we're praying that in spite of zero immune system the big gun antibiotics will be sufficient. If his severe fevers subside after cdiff is under control, then part of the mystery of these fevers will be solved. 

On a brighter note, Ian's best friend has traveled all the way from Thailand to be by his side. Chinua arrived last Sunday and has been here pretty much day and night besides a few days of quarantine to make sure he didn't catch any bugs on the plane. While I'm back and forth spending time with the girls, it's been such a blessing to know Chinua is here. 

Fiona turned 4 on Wednesday and we celebrated with our beloved friends in Sacramento. Ian joined in via FaceTime for the singing, tea party, ice cream and cupcakes. It was bittersweet. I'm thankful for modern technology so he could "be" there with us, but it was also painful. I could see it in his eyes. He wants so much to be there, not just for this birthday but for many more to come...

Oh how it has been a swirl of grief and grace around here. High highs and low lows and everything in between. In Ian's perky moments he has us all rolling in belly aching laughter, but constant fevers lately have deflated him significantly. These days are more full of heavy sighs and reminders to take it one day at a time. 

Thank you for your prayers as we continue to run this marathon. 

Grace for Today

Well, we have some good news on the quality of life front to share: Ian ate his first solid food yesterday! He shared some chocolate ice cream with Fiona and then later ate a whole breakfast burrito. We thought he'd have to go from clear liquids to shakes or puddings or jello, awful stuff that he couldn't even choke down, but they let him have eggs and avocado inside a tortilla! Since his colon is still tender, he's going gluten free and sticking to just eggs and avocado for a while. It's so good to see him eating solid food again. 

Ian's fevers also seem to have gotten a little better - the spikes aren't quite as high (especially if he takes Tylenol in time) and as long as Tylenol is in his system he's able to have pockets of time fever-free. That's a much appreciated improvement from nonstop high, miserable fevers. Maybe that heavy antifungal is making a difference? We're not sure yet.

There is still a lot of mystery around these fevers. They did a CT scan of his sinuses today to check for possible clues. He's also getting a strange rash all over and mild headaches. 

My mom (bless her heart) is getting a lot of quality time with the girls while I've been with Ian night and day. I'm so thankful to be able to be by his side. We had a few days of deep grieving together, facing the likelihood that he won't be with us much longer.  We're trying to face the facts but still hold on to hope, and take all of this one day at a time. We're learning there's always fresh grace for today, every day. 

Ian this morning, enjoying a fever-free moment.