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.