Day 53: Happy Resurrection Day!

Death has been swallowed up in victory.
Where, O death, is your victory?
Where, O death, is your sting?

- 1 Corinthians 15:54,55

Today is Resurrection Sunday. I have baskets of sweets and surprises waiting on the table to greet the girls when they wake up, but I pray that the rich meaning of this holiday sinks in a little deeper this year for all of us.

Ian is doing well. He has only needed one blood transfusion in the past four days, a major improvement from needing them daily! He is eating well and walking a mile or two daily. The doctors seem to come around more to be entertained by Ian's jokes and stories than to monitor his health. We are so thankful!

On the home front, Asha is starting to ask big questions relating to Ian's sickness. Did God make Abba sick? It's a simple but weighty question, without easy answers. Ian wants to have a good discussion with her about it sometime soon. I'm glad he does, because I'm not sure how. There's great mystery in how God's omniscience and omnipotence dance with his perfect goodness and loving kindness.

I don't have an answer. But I do know that even in these trials I can take comfort in knowing the Source and Sustainer of all is Good. And this season of Easter is a reminder that He is not removed from the suffering of humankind. He has become one of us and experienced firsthand the trials and temptations we go through, the rejection and the suffering and the jaws of death. He faced all of these and overcame, blazing a trail for us to take His hand and follow, fearless. As a cancer survivor myself, I know firsthand the peace and joy of facing death without fear and it has been beautiful to see Ian glow with the same confidence I felt in the fire. What a gift!

And so today we will celebrate. We will read the story of Jesus conquering death and we will rejoice in the hope we have received. We will take His hand and set our hearts to follow, day by day, come what may. We will set our hope not on the fleeting things of this life but on the Giver of life who will one day wipe every tear away, always and forever...

Happy Resurrection Day!

Day 48: Hangin' In There

It's hard to believe we're over half way through the first 90 days! Liver failure was a rather unexpected bump in the road, but thankfully he seems to be recovering quickly. I'm sitting here, watching him sleep, feeling thankful for all the hurtles that are now behind us.

My dad flies in tonight from Oklahoma to add more helping hands at home. He has mastered the art of convincing Fiona to go back to sleep in the middle of the night, so having his nighttime backup again will be especially helpful. I've missed not being able to spend the night with Ian and be there when the doctors come for their rounds every morning to talk about recent test results and answer questions. With my Dad here, I'm hoping to be present for a few of these and get a better grasp of everything on the table for Ian right now.

So far, things are pretty quiet. Although he still requires platelet transfusions daily, his counts seem to be creeping upward. The GVHD spots have cleared up and he no longer needs to treat them with "chemo" lotion. It has some scary side effects with long term use, so we are glad it worked fast. Ian vomited this morning, which is always a red flag, but since it only happened once they aren't too concerned. He eats and holds down every sandwich I bring him, but he can't even look at the hospital menu without being flooded with nausea. I'm trying to keep him stocked with sandwiches as best I can. Asha and I had an assembly line the other day making 8 turkey/cheese bagels for him, and he wolfed down two of them within minutes of our arrival! Although bagel sandwiches seem to always win, it's a moment by moment quandary what he is craving or might be able to stomach. Those of you who have experienced pregnancy may know what I'm talking about. If anyone lives close to San Francisco and wants to help keep Ian fed, please let me or Ian know!

The big prayer right now is for the GVHD to stay under control. Now that it has popped up, they are more concerned about it showing up in other places as well. Please continue to pray it stays nice and quiet, silently attacking the cancer but ignoring Ian's vital organs. If the GVHD stays under control, then they will start reducing his immunosuppressant after he completes his first 90-100 days. Please pray all goes smoothly so he can eventually be off of immunosuppressants completely. Oh how wonderful that would be...

Thank you!

Day 45: Rejoice and Lament

Learn this lesson well, my friend

There’s a time to rejoice and lament

Every season will find an end

All will fade and be made new again.

-- Josh Garrels 

I've been listening to this song by Josh Garrels a lot lately. I have it on repeat as I drive back and forth to UCSF. It's a beautiful song and so many of the lyrics seem to fit like a glove with our lives right now. If you want to hear it, here's a link:

Rejoice and Lament

We have several reasons to rejoice. The biggest one right now is that Ian's C diff appears to have cleared up already! This is a very good thing. He was significantly more disappointed about getting C diff again than he was about having leukemia.  He even had a nightmare of being a C diff leper the rest of his life, forced to always wear the yellow gown and gloves in public and watching mothers grab their children to walk on the opposite side of the street to avoid him. What a relief it has cleared up so fast. Thank you for your prayers!

More good news is that Ian's stomach bloating continues to decrease. They did another ultrasound of his liver and fluid is now flowing in the right direction. Such a relief! Many have asked about my mystery birthday illness and I'm convinced it was just allergies since it cleared up that afternoon with no lingering symptoms. Thank you for your prayers on that front, too.

Now for our current concerns. The biopsies of his toe and groin came back positive for GVHD, so they are putting a topical immunosuppressant on those areas in hopes of quieting it down. A little bit of GVHD can be a good thing, signifying that his brother's immune system is fighting foreign cells which include the cancer. Please pray that it destroys the leukemic cells completely, but doesn't fight against Ian too much in the process.

Until today, Ian's energy and strength have been rising daily.  He has been dancing and singing and laughing and joking like the Ian we all know and love. What a joy it has been to see and hear that spark of life blazing once again! The girls even came for a visit yesterday and we all had such a sweet time.
Today something is off, however. He feels like his liver is hurting again, like someone punched him in the stomach, like it did when this whole liver failure thing started a couple weeks ago. He is pretty tired and low energy again, too.  His bilirubin levels spiked abnormally high a few days ago, but came back down pretty fast. They are watching him very closely, but so far the pain is the only indication that something isn't right. My heart laments to see him so weak and in pain again, especially after experiencing him so lively these past few days. I know he will be back again soon though, dancing and singing and laughing like he was yesterday...

Day 41: Roller Coaster

It's a new day, with new twists and turns on this roller coaster ride. On the bright side, Ian continues to improve in terms of fluid retention and liver enzyme levels. He no longer looks and feels 6 months pregnant. He is feeling more and more life and joy and spirit rising. We are so thankful for this!

On the down side, it's been a rough day. Ian has been having some intestinal issues that were just diagnosed to be a recurrence of Cdiff. He was really bummed to hear this, remembering this plaguing him for so many weeks during his first round of chemo. It is a super resistant bacteria that is really, really difficult to kick. Please pray this superbug is healed supernaturally quickly!

Ian is still needing platelet transfusions at least once daily and red blood cells often as well. They are hoping once his liver recovers, his blood counts will recover as well. Please pray this happens ASAP.

Ian has also been struggling with nausea and vomiting. He's been living on two odwalla protein shakes and a bottle of water per day, but today he has been trying to stomach some solid food. He held down a popsicle this morning and a bagel this afternoon. Please pray he will be able to continue eating more solid foods and hold them down.

They are also concerned about a couple suspicious rashy patches being signs of GVHD so they took a biopsy (a "hole punch" of skin) off his toe and one off his groin. Not much fun. Please pray all of these complications clear up quickly and smoothly and completely.

Thank you!

Day 40: Happy Birthday

Well, there's good news and bad news.

The bad news is that I have a cold (or bad allergies) and so even though Asha is at a sleepover and everything is in place for me to be with Ian today, I won't be able to see him for a while :(

The good news (best news!) is that my birthday wish has come true: Ian seems to already be responding to the medication!!!
He has lost several pounds of fluid and is feeling much, much better. The doctor is pretty shocked that he is responding this quickly, but I am not so surprised... So many prayers have been bombarding heaven for him. I can't think of a better birthday present.

Thank You!!!

Day 37: Update

We are hanging in there. Ian's weight gain has stabilized a bit, only gaining one pound overnight rather than 4 plus as before. He is feeling a bit more chipper and able to be present. We even walked laps for half an hour this afternoon. It will take at least a week or two to know if he is responding to the treatment, so we are just waiting it out with hope.

Thankfully, Ian has been able to hold down odwalla protein drinks so he is getting some nutrition. They are being as conservative as possible with IV fluids since his bloating continues to increase. It's a delicate balance because he needs to stay hydrated, but also they need to watch his fluid intake and outflow to make sure he doesn't gain too much fluid.

They are delaying draining his belly until it prohibits breathing or kidney function to a significant degree. Ian protested about getting stretch marks, but his doctor said he doesn't care about those. Glad Ian has the pep to throw in little comments like that occasionally :) On the serious side, Defibrotide has a possible side effect of fatal bleeding and he is having to have daily platelet infusions already, so they are avoiding needles as long as possible. We also just found out this is the first time they have ever administered Defibrotide here at UCSF and it has only been tested on less than 200 patients. So keep those prayers rolling...

Thank you!

Day 36: Defribrotide Begins!

Thank you for your prayers! The nurse just hung the first bag of Defibrotide on Ian's IV tree and it is flowing into his system. He will be getting it every 6 hours for the next three weeks.  Please pray it is 100% effective and his liver responds quickly!

Thank you everyone for the monsoon of prayers and support you have poured out. Ian's spirit seems a bit stronger and brighter, though he is still in substantial pain and discomfort. He has gained over 14 pounds of fluid (!) in the past week and we are now really anticipating the drainage of his stomach to relieve some pressure.  It's a rough road we're on but we are genuinely at peace knowing our Father is at the wheel.

Some have asked about my parents and help with our girls. My Dad flew home to Oklahoma on Tuesday as planned, but after news of Ian's status he is packed and ready to return as soon as tomorrow.  My mom is staying until the end of the month. They have given of themselves above and beyond to support us from the very start.  My mom booked her flight out here as soon as she heard Ian was in the ER, before leukemia was ever suspected. I am so blessed and thankful for them!

Urgent Prayer: Life and Death

I'm writing with tears streaming down. We just heard that they have diagnosed him with a rare liver disease associated with the transplant called "sinusoidal obstructive syndrome" or SOS. Basically, there are clots in the lining of the veins of his liver stopping the flow of fluid, and actually reversing the flow causing fluid to build up in his stomach. The ultrasound this morning confirmed this is the case.

Up until recently, there has been no cure for this and it's an end game situation. There is a medication called Defibrotide they are very hopeful about via clinical trial that they are working on getting for him. It is only made in Italy and there are hoops to jump through but they assure us he will get it. It takes a week or two for response from the medication, and he will be on it for at least three weeks. In the mean time, things are expected to get worse and they may need to drain his belly multiple times to allow room for his kidneys to function. His stomach looks twice as big as it did last night and he hasn't been able to eat or drink. He is in such pain and discomfort already, I can't imagine two more weeks of this progressing... I'm still in shock.

Please pray they can get Ian in the clinical trial and receive the Defribrotide quickly.
Please pray he responds as fast as possible and it is completely effective in treating his liver. Sometimes people never fully recover even with the medication and need to have their stomach drained regularly for the rest of their lives. Please pray this is not the case with Ian.

So it seems the heat has been turned up a few notches. Please pray that when we walk out of this furnace we'd be like the young men in Daniel- glowing brighter with a testimony and not even smelling like smoke.

Love 11 Long!

Ok, quick postscript. We are now checked in at 11 Long and the doctors here have decided against the ER advice to drain the fluid in his stomach. They are ordering a better ultrasound than the ER one and will proceed from there, beginning with the least invasive diagnostics. They were so informed and understanding. We are really thankful for this place.

Day 34: Home Sweet Hospital

Well, we are still in the ER but anxiously awaiting our admission into good old 11 Long with all the amazing nurses and doctors that know Ian and his situation well. 11 Long at UCSF has been a home away from home off and on for several months now. The blood work from our clinic appointment this morning showed elevated counts from his kidneys and liver and low platelets once again, so they immediately decided to admit him to the hospital. Until a bed opens up, we are bunking at the ER where the standard of care is, well... a bit scary. They assured us he will be in 11 Long sometime tonight.

We still only have questions, but here are some steps they have talked about so far to try to come up with some answers:

Step One: He has gained several pounds from bloating with very little eating and an ultrasound today showed quite a bit of excess fluid. They are planning to give a second infusion of platelets and then draw some of the extra fluid from his stomach to bring some relief and to check for bacterial infection.

Step Two: They are supercharging him with IV fluids since dehydration can cause higher liver and kidney blood results. They still want to do a CT scan but the dye used can cause more damage to his liver, so they are waiting to see if they can hydrate him well and check out the bacterial infection first.

Step Three: Depending on how things go, they may also do a scope of his GI tract and a biopsy of any suspicious areas to check for GVHD.

Although the ER is a scary place for an immuno-compromised person especially, I am very grateful that Ian is being admitted back to UCSF. I have been really concerned about him as I've watched him going downhill, and now I know they see it and will pursue figuring out why. Please pray they find the right answers as soon as possible and Ian recovers his strength and health quickly.

Thank you so much for all your prayers and words of encouragement today. I felt lifted up in a big way! I think Ian is feeling it too, although he is still pretty out of order. We are so grateful for the chorus of support and prayers carrying us along!