Day 237: Goodbye, Posaconazole!

I am thankful to say we've had smooth sailing these past couple weeks with no further sickness in our family and no reaction to reducing Ian's immunosuppressant. They stopped it entirely this past Friday and so far so good. VERY good news!  THANK YOU for your prayers!

Stopping the immunosuppressant means he no longer needs to take several other medications, one of which has been the daily scourge for Ian since transplant. Morning, noon and night he had to eat something fatty beforehand for this medication to take effect, and each time he had to meticulously swig a couple ounces of Odwalla Superfood immediately after swallowing the loathsome spoonful of sweet, syrupy, anti-fungal fluid. All commotion in the house had to stop during this ritual and we had to give at least a good six feet circumference of personal space around Ian as we respected the intensity of energy it required for him not to vomit while choking it down. Three times a day, for about 237 days.  Every clinic day, every camping trip, every time we left the house for any length of time we had to make sure to pack fatty foods and a sufficient supply of well-chilled Odwalla green drink.  We were excited to finally cut all immunosuppressant last Friday, but honestly I think we were even more relieved to hear he no longer has to take posaconazole!

It also turns out that Posaconazole is fairly toxic for the liver, and they are now thinking that this may be the cause of his liver issues. They will test him again this Friday and we will see if his numbers are any better after a week off of the medication. If this is the case it would be good news, meaning it isn't SOS or GVHD. So far his liver function tests remain elevated but have not increased significantly. He is taking huge quantities of green tea extract and after seeing if there is any change on Friday from dropping the posaconazole, we plan to begin other natural liver cleansing herbs including milk thistle.  He wasn't able to start these herbal supplements while still on immunosuppressants, but now that he is off that delicately balanced cocktail of medications we have a lot more freedom to explore the world of natural health support. 

It will still take a while for Ian's immune system to develop now that it is no longer suppressed, which means he is still in the danger zone for GVHD and quarantine is still in effect. The doctor says he should be ready to re-enter the social world of work/church/etc. around December 1st if all goes well. Asha is planning to celebrate his re-entry with multiple trips to the Santa Cruz Beach Boardwalk and Happy Hollow Park and Zoo. That might be a bit too much for him to start with, but I'm sure she will be more than thrilled to return to occasional park days and play dates and general freedom from the imminent danger of germs! 

We have really enjoyed this time of slowing down, being home, and being together. Part of me is sad that we are getting close to the end of this special season of togetherness.  It has felt like a cozy chrysalis for our family.  Ian and the girls have bonded like never before.  Part of me wishes we had another year to grow together in this protected space. But another part of me is also excited for another milestone crossed and a new beginning ahead.  And everything in me is filled with gratitude for how well Ian is doing and the progress he has made! 

Day 221: Update

Ian has been fairly low energy this past week. His liver function test results yesterday were pretty much the same, some slightly up and some slightly down. They decided to triple his green tea supplements and focus on getting him off immunosuppressants as soon as possible. They expect there to still be some leukemia cells hiding out, and the chances are much more likely the longer his immune system is suppressed.  The whole point of the bone marrow transplant is to have GVL (graft vs. leukemia) and usually GVHD (grafts vs. host disease) comes with the territory. The transplant will be unsuccessful if any leukemic cells survive,  so they cut his immunosuppressant in half yesterday and are hoping for him to be completely off within a few weeks.  This is an aggressive move and opens him up to more liver issues as well as GVHD, but the benefit of a possible cure outweighs the risks. Please pray this goes miraculously smooth and all leukemic cells are detected and destroyed!

On the home front,  two days ago I was hit with a miserable cold/mystery allergy attack. We avoid anyone whose had symptoms or has been exposed to anyone with symptoms of illness for the past two weeks, and yet now here I was sneezing and nose dripping all over our home and kids! I washed my hands a billion times, I swear. Friday morning, some dear friends swooped down with angel wings to pick up the girls for a sleepover so I could get some rest and to avoid our children becoming deceptively cute germ vectors for Ian.  I'm feeling much better today after a blessed 24 hours of rest and so far I'm the only one whose been hit. Please pray it does not spread to anyone else in our family...

Thank you!

Day 215: SOS

I have some good news and some bad news:

The good news is that Ian's recent chimerism still shows 100% donor - Hooray!!!

The bad news is that Ian's liver is not doing so well. I can even see it in his eyes - they are turning yellow. His doctors are now thinking it is a mild form of SOS returning, based on their readings of his blood work. There have been instances where green tea extract has helped patients who refused to do the clinical trial, so we started today on a high dose of green tea pills. I am also determined to get as many organic farmer's market vegetables into his body as possible this week by juicing and cooking up a storm. We really don't want him in the hospital another three weeks!

Please pray that we see improvement this next week when they check his liver function again.

Thank you!

Day 204: Happy Birthday Ian!

Today is Ian's birthday! 

I wish I could throw him a huge party to celebrate, but with quarantine that is utterly impossible. So I've decided to wait and throw a really big one next year.

Ian was born on Labor Day, so somehow even if it doesn't fall on his birthday it feels like a special holiday. We celebrated by going for a family hike at Rancho San Antonio. 

Ian set up a hammock next to a small creek and watched the girls creek walk. 

It was a very special day for Asha - she lost her very first tooth! Her bug container wrist band came in handy as a tooth holder for our hike back, and a perfect display case to proudly it show off.   

Ian and Asha ran races the whole way back to the car. So good to see Ian active and outdoors again!

Update on Ian's health: 

Clinic days have been pretty uneventful. His liver counts are still up, but not alarmingly high. They are still keeping his immunosuppressants high, presumably to protect his liver from GVHD and give his body more time to adjust to his new immune system.  I am hoping to be able to go with him to clinic this Friday to meet with his doctor and ask more questions and get the latest chimerism results. We should have a better idea of where he is at and possible next steps after this appointment.

These days, every day feels like Ian's birthday.  I know it sounds sappy, but it is honestly the truth. Each day is a new day to celebrate life together and be thankful for each precious moment we have with him.  Every day I remember what it was like with him gone for months at the hospital, his life hanging by a thread, and this gives real perspective to my daily home life. One of the deepest blessings of this ordeal has been the consistent reminder of how ephemeral our lives really are and not to take each other - or our own lives - for granted.  Every day, every breath, is a gift from God to be thankful for.  Not that I remember this all the time, oh how I wish I did!  I am so tempted to worry about tomorrow or stress out over silly and insubstantial things in the heat of the moment. But having the reality of cancer in our lives gifts us with built-in reminders that call us to slow down and savor all the little things that make life sweet.  

Happy Birthday Ian, My Beloved...

May we have many, many more years and may we savor each day of them together.

We love you Mr. Brown!!!

Day 197: Camping Update

I am thankful to say our adventure went surprisingly well, especially considering there were thunder storms two of the three nights, a wildfire raging out of control close by,  and it was our first real camping trip with little Fiona.

Ian really felt the impact of chemo on his lung capacity in such high altitude and his energy levels were substantially lower than his usual eagle scout self, but he charged through. Check out these tasty breakfast burritos he whipped up for us our first morning at camp!

 

After the first rainy night, Ian worked hard to build an impromptu tarp (complete with camera tripod as one of the poles) to keep our site as dry as possible just in case we had to pack up and rush to the hospital in the middle of a storm. That made me a little nervous, I confess, but thankfully all went smooth.

The girls loved camping! They spent a lot of time side by side playing with rocks and sticks and dirt and giant black ants and flowers in the dry creek bed behind our tent.

They also drank more hot cocoa than ever before in their lives!

All in all, it was a really healthy challenge for us.  Fresh air, gorgeous views, physical exercise...

We plan to go camping again soon! 

Day 192: Camping Trip!

It's been a few weeks without a peep, so here is a quick update on Ian and our family:

Thankfully the weeks of silence have been due to everything remaining pretty stable. The port in his chest was removed a couple weeks ago and has healed up just fine. What a relief. I'm no longer married to a cyborg! 

Ian's liver counts are still mysteriously elevated, but after an ultrasound and other blood work his doctor is leaning toward it being caused by the chemo rather than GVHD. Other than the liver issue, everything is going pretty smooth. Still no change in his immunosuppressant, so looks like a long road before quarantine ends. 

Thankfully we have each other and are enjoying these quiet days together. We are also starting to venture out beyond the walls of our home and the clinic, exploring the great outdoors. Although public areas and groups of people are still off limits, the open air of nature is perfectly fine as long as Ian doesn't dig in the earth and breath in spores or other dangerous microbes. So a couple weeks ago we drove to the Sierras and Sacramento for our first adventure together outside the house, and tomorrow morning we leave for a camping trip for several days in Tuolumne Meadows! Ian has been a lean, mean, dehydrating machine this past week preparing all the snacks and meals for our trip. 

He even experimented and finally gloriously nailed a backpacking recipe for Penang fish curry, in hopes of catching some Sierra trout on our trip. Woohoo! 

I hope to share some fun pictures and stories when we get back next week...

Thank you for checking in with us and keeping us in your prayers!

Day 171: Happy Birthday Asha!

Today was Asha's 6th birthday, and it was the happiest one ever. There were lots of sweets and balloons and gifts and surprises, but here was the BEST part of it all:

Ian's chimerism results are in: 100% donor!!! 

This is from the peripheral blood only, not the bone marrow. But it really feels like a miracle, coming on the eve of Asha's birthday especially. For months she has been praying he would be healed by her birthday, or on her birthday. Those were the two choices she offered, God could take his pick. I had been honestly dreading the test results and her birthday, knowing they were likely to overlap and fearing the worst. I guess that is why Jesus told us we need faith like a little child. 

It isn't proof that he is cured (it will take about 5 years being disease-free before the doctors consider him cured) and we still have a long road ahead, but this is definitely wonderful news. His liver function tests have improved significantly also, so we are coming out of the danger zone there as well. Whew!!! 

Ian's doctor is out of the country for a few weeks, but when he is back we will talk more about whether or not to do more chemo. His immunosuppressant was doubled when his liver tests were elevated, and we are not sure when the slow process of reducing them will resume. For now we are holding steady under quarantine and enjoying life together as a family. 

Ian has an appointment next Friday to have the central line taken out of his chest, and I am counting the days! I don't mind flushing each of the three lumens daily with saline and heparin, but the waves of infections and the whole business of a tube coming out of his chest has been really disturbing for me. So thankful to have this part of the journey come to an end soon.

Good news all around. 

So thankful. 

Thank you for your love and prayers! 

Day 164: The Latest

So here's the latest news:

• All of Ian's liver counts have gone up since last week. Not significantly, but we were hoping they would continue to go down instead of back up. Definitely no chemo this week. Even so, we are deeply grateful for those who quickly responded and volunteered to take Ian if we had needed it. Please pray for his liver to heal from whatever is causing these elevated LFT's.

• Ian now has what looks like an infection in his central line, so we spent the afternoon today sitting in the infusion room getting IV antibiotics instead of chemotherapy.  He began an extra two week round of oral antibiotics tonight as well. Hopefully we are catching it early. Seeing the tube coming out of his chest makes me quiver enough as it is, but the redness and oozing and high probability of infection really makes my skin crawl and heart ache.  They are considering taking the central line out of his chest completely this next week since he is no longer taking IV medications regularly. Please pray the infection clears up quickly and completely and does not spread any further.  

Thank you!

Day 161: Quick Update

Here is a super quick update:

•  Ian's liver test counts have come down a bit. His doctor is still unsure if the cause is GVHD or toxicity from the chemotherapy, since the timing of everything lines up perfectly for both. They have postponed his chemo treatment, just in case. If his liver function tests are back to normal or close to normal this Friday, then they will begin round two of chemo then.  
• They pulled blood for a new chimerism test last week, and we should have results by the end of the month.  These results show cancer markers for leukemia as well as the donor/host percentage in his blood.  It's always a little harrowing waiting for this kind of news, so I'm trying not to think about it. 
• They dropped the second clinic day so we are back to just Fridays!  Huge relief, especially since Asha has just started to get car sick on these longer drives. By the way, if any of you are available to drive Ian to the clinic in San Francisco for one of his chemotherapy appointments so I could stay home with the girls, this would be a huge blessing.  The chemo schedule is Friday - Tuesday, once a month, but actual appointment times vary. Next week (if they decide to do it) Monday is still open for healthy volunteers who haven't been knowingly exposed to anyone sick in the past two weeks.  Please contact us personally if you are interested in helping out in this way.

Thank you!

Day 150: Clinic Day Prayers

I feel pretty toasted after a very long clinic day, but I also know how valuable your prayers are so I wanted to post a quick update:

At the forefront of concern is news that Ian's liver function tests (LFT's) are elevated significantly. His doctor seems more concerned that it is GVHD than the SOS returning, so he doubled Ian's immunosuppressant to see if that helps. It's tricky to know the cause, since his chemo can also cause elevated LFT's. He is scheduled to begin the next round this coming Friday, but they may push it back if his levels are still elevated. 

Statistically, doing this chemo treatment gives a greater cure rate so it is pretty important. It may not be worth the risk of another liver failure, however.  If the issue is GVHD, it could possibly mean immunosuppressants the rest of his life. It could also lend a greater chance of cure, however. This is because as the graft is fighting his liver, it may also be fighting the leukemia as well. I feel dizzy following all the rabbit trails of possibilities, so I'll leave it at that. I just pray that by whatever means necessary the end result is that he is cured.

Another item for prayer is his lungs.  He has had a pretty bad cough for the past week and a half, and there was a lot of crackling when they listened to his lungs today. They did a chest X-ray and it came out clear, no pneumonia, so they just put him on antibiotics. Please pray his cough and lungs clear up quickly and completely.  

Thank you!