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. 

Update

Here's where Ian is at right now. It's not encouraging:

The intestinal infection was diagnosed as typhlitis, colitis caused by prolonged neutropenia.  It seems to be clearing up with the break from food and strong antibiotics, as the tenderness in his abdomen is decreasing. His fevers are continuing to ramp up, however. He burns up near 103, hiding in a cave under the covers just waiting for the next dose of Tylenol to bring it down to a lower fever. They are trying to get to the bottom of these severe fevers since they don't seem to be connected to the typhlitis. 

They did a CT scan of his lungs and found several small but rapidly growing nodules. They suspect it might be a fungal infection and are now giving him the biggest gun antifungal available. It's hard on the kidneys so they have to flush him with a bag of saline before and after. We will see if this helps the fevers at all. 

Ian's WBC (white blood count) has been inching higher, and we were hoping it might be sprouting hope. Sadly, we discovered it is due to the leukemic blasts that have progressed from the bone marrow into his peripheral blood. He's never had this before, so that was another heavy blow this week. 

Ian started "eating" clear liquids a couple days ago and we're hoping he can graduate to soft foods soon. All he's had this past week is a few bags of glorified Gatorade "nutrition" and lipids by IV and a couple bowls of unappetizing clear broth. 

We are still looking into the clinical trial in Texas, and UCSF is still working on trying to get the drug he needs here. Without an immune system, at the state his body is in at right now, it's unlikely any of these treatments will work. Even if they had access to the most ideal drugs to try, they can't start anything while he has these fevers. 

There are just so many things stacked against him right now...

Please continue to pray. 

Heavy Storm Clouds

My head is pounding as I recover from spending all night nodding off in a rock hard chair in the ER, but I know I really need to send an update so here it goes. 

Oh it's been rough. Rough, rough, rough. The "I want to hide in bed under the covers and sleep, hoping that this is all just a bad dream" kind of rough. There are heavy storm clouds threatening overhead. 

The treatment Ian started was denied by insurance. It's too costly for the hospital to cover, so it's now off the table unless the drug company agrees to donate it. We're hoping the hospital will cover the first dose and not send us a bill for a quarter million dollars. Checking the mail these days is scary business. 

Ian came home New Year's Eve and was there with us for about a week. It was bittersweet. We were so glad to have him home, but it was painful knowing he was released full of leukemia with no immune system and no further treatment in sight, surviving on transfusions every other day. His soul is still thriving, but his strength is waning. There is a growing shadow of grief looming and I can't seem to push it away. 

Ian started having a fever last night and has been having abdominal pain for a while now. They are thinking it might be colitis, intestinal inflammation.  He's back in the hospital and isn't allowed to eat or drink anything until further notice. He's gotten too skinny already from my perspective, so this is worrisome. If it clears up in a few days, then it was just colitis caused by prolonged neutropenia. If it doesn't clear up, they will look into a more severe form of colitis caused by the treatment which would require steroids. 

I'm trying to fight against worry, to refuse to be held hostage by the terrorists of anxiety, fear and hopelessness. I'm trying to trust, trying to hope, trying to be present. But to be honest, I'm feeling very weak, very overwhelmed, very sad and alone. I'm just a Dixie cup. I don't have the strength to carry this heavy burden, to weather this miserable storm. I know my anchor holds beyond these flames, that beauty can come from ashes, that fresh new life will eventually spring up after the storms have passed, but right now it all just feels too sad and grey. 

Please pray for us. 

An Experiment Begins

Well, Ian's counts aren't coming up. The biopsy results showed very few cells in his marrow, and what they did find was 60% disease. If this had happened just a month ago, it would have really been the end of the road. 

All the doctors just happened to come back from a big hematology conference a few weeks ago, however, where they heard about a possible new treatment for Ian. They gave Ian his first dose of the experimental treatment this morning. There are a list of serious and possibly deadly side effects, including full-blown GVHD, but at this point it is our best option.  

We are thankful they were willing to try this experiment here. They've taken lots of labs and will be learning from Ian's case as this goes. A very dear friend of ours has been praying they would find a new treatment for Ian and it would open up a cure for others. Let's pray her prayers are answered.

I'll leave you with some pics of our sweet Christmas visit with Ian yesterday: