Home Sweet Monastery

Yes, it's true... Ian is out of the hospital!

He was released Sunday evening, giving us just enough time to unpack his huge bag of medications and de-code the list of which ones to take when... Some only on weekends, some every three days, some only with fatty food and some on an empty stomach. 6am, 9am, noon, 2pm, 6pm, 9pm, 10pm. I was a bit overwhelmed with the extent of medications and detailed instructions for each one. Thankfully, our friend Tom had installed a mega-huge white board on the wall of Ian's room:

My Dad helping Tom install it a few days ago...

When we got home, I quickly scrambled to create a wobbly graph with each of the meds and their doses, and a little circle to fill in once I've dispensed it that day. It's a rough draft, but I'm so thankful for this visual help - it really makes a difference!

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Uriah, our first caregiver, arrived yesterday morning and I am ever so grateful for him. At first I thought I wanted a few days of Ian to myself, but as soon as we arrived at the monastery and the extent of his care schedule hit me I realized I needed help - ASAP!

It is hard to trust Ian in someone else's hands, but I can't trust him in my own either. I am human, and a rather frazzled one at that. I can only trust him in the hands of my Lord.  And I know he is there.  So I am slowly letting go, letting Uriah become the main caretaker so I can spend time with the kids and not have the weight of everything crushing down on me. I feel it all too often, like a huge boulder hanging over me threatening to smash my world to pieces if I forget something or make the wrong move. I have a little journal book of Scriptures that are life to me right now. There are a lot of verses about trust and refuge and making God my fortress. If my trust is in Him, then I won't be shaken by the ups and downs of blood counts or strange rashes or occasional fevers. My fears won't toss me to and fro in the storm if my eyes are on the Maker of the Universe who can calm the storm with a word.  So please pray that I will take the time to stop and look at Him every day, again and again, because I know storms are bound to hit these next few months.

Thankfully, no big storms have hit so far. Ian is eating well and holding everything down. He even made his first attempt at homemade pasta yesterday! (He spent a lot of time in the hospital watching Italian cooking shows...) His first clinic visit was this morning and all of his blood work looks great. We were confused by his blood counts going up so fast and then crashing down to neutropenic, but after just one shot of the growth factor his counts shot right back up again. The doctor says this is good, it is the sign of a really good graft. So we are thankful for this! On the prayer front, he still has a pretty strong case of nausea and a painful rash from the chemotherapy. They are assuming it is not GVHD at this point, so that is another thing to be thankful for.  His energy is low and it takes a good amount of prodding to get him to walk or take a shower, but hopefully once the nausea and rash subside his energy will increase and we won't have to get on his case as much!

I guess that is it for the update for tonight.
Thank you for your prayers - please keep them coming :)

Day 17: Feeling the Love

It's been a long couple days, but I wanted to post an update real quick. I'm sitting at the monastery, happy to announce that it is now ready for Ian's homecoming! It has been a rocky road well watered with tears, I must admit, but around each bend there have been friends to care for me, pray for me, show me the flowers, and sometimes straight pick me up and carry me for a while. Furniture has been moved, a futon mattress with newly discovered mold was hauled away, a microwave and bagel toaster were delivered to my door along with yummy homemade chai, and a brand new futon mattress purchased for us as well as delivered and installed. Amazing! I'm still floored by how much love I've received in the past 24 hours...

And now for an update on Ian. He is feeling better! He still only holds down some of his food, but his clarity has returned and he is much more chipper. I'd even say some moments he's chatty - a far cry from a few days ago when he couldn't even answer a simple question! His counts have been going back down (which they say is common) so they have resumed the growth factor injections. He is borderline neutropenic today, but they seem confident to release him tomorrow morning. We were all set for him to come home tonight actually, but last minute they discovered the in-home training nurse wouldn't be able to come until Monday and they can't release us until the day before.

So I'm sitting here at the monastery, alone, taking a night away to rest. It is so peaceful here, especially now that all the preparations are complete. I am finally feeling ready, and I'm definitely feeling surrounded by Love.

Thank you for your prayers!

Prayers, Please!

I'm sitting at the local car wash, waiting for our car to be professionally scrubbed inside and out. As I was about to load bed linens into our car this morning, I noticed all the sand and dust and ancient cracker crumbs that inevitably multiply in a family vehicle. All my alarms sounded. Alert!!! Yet another door for micro-organisms to invade!!!

This is a window into my life the past few days. Step by step, trying to get things in place and take action when the alarm sounds. I wish I had a few more weeks to prepare, but I have to trust the divine alarm system is guiding me and will cover any loose ends I miss. I have to trust. I have to, though sometimes it's hard...

Ian is still pretty miserable. He isn't eating. He isn't holding down the little bits he does eat. It is scary for me, because he was flying through this until his counts came up. They are still considering releasing him tonight, but we are hesitant about it. He is really not in a good place right now. They say it could be GVHD. They don't know. God knows. I have to trust. One day at a time.

I'm frazzled. I'm still wearing the same cloths as yesterday. My parents are over 70. My dad rarely feels well, with mystery fevers and burning skin. My mom is tiny, and she's losing an average of half a pound each day. It's a lot of activity chasing these girls. I'm worried about them. I'm also very busy trying to get the Monastery ready. There's a lot on our plate right now.

We could all use A LOT of prayers...

Thank you :)

Day 13: Blood Counts Rising!

It's confirmed, the graft has taken and Ian's blood counts are rising! His ANC (which is the one we've been watching most) went from .88 to 7.27 this morning...a hefty jump. Those new stem cells are taking their job seriously and we haven't seen any signs of GVHD (Graft Vs. Host Disease).  It is looking like he will be out of here in just a few days, maybe Friday!

I realized recently that I haven't updated you on the issue of a caregiver for Ian.  We are set - we've been blessed with not just one, but three perfect caregivers!  This works out beautifully, especially considering the intensity of the isolated living situation.  Each will take a month, more or less, so Ian will have some variety and the caregiver won't go stir crazy.  Thank you for praying!

In the big picture, Ian is doing awesome.  His blood counts and vitals are great, and his mouth sores are looking better too. Sitting by his bedside today, however, he is barely able to talk.  He is transitioning away from pain meds right now and it is not so fun.  He tried to quit cold turkey this morning, but that was so miserable that he decided to try backing out slowly.  He is sleeping a lot and has hardly exercised today. For some reason it really effects his nausea levels, too. He hasn't eaten at all, even though he is no longer neutropenic and I'm happy to bring him anything that sounds even slightly appealing. This is the worst I've seen him yet, this round.  Please pray this transition doesn't last too long and he will be able to get off the pain meds completely without further withdrawal symptoms. 

I am doing much better, but still it is a struggle to keep all the balls in the air. I'd appreciate prayer for my parents as well, who are ever busy with our energetic, growing girls. Tomorrow I'm planning to take them out for an adventure in nature again and give my parents a break. Please pray we will all be refreshed and I get some sweet connecting time with the girls. 

Thank you so much for praying and loving us through this! 

The Monastery

Preparations are currently under way as we set up Ian's temporary home, heretofore referred to as "the monastery."  We are praying it will be a place of rest, healing, joy, connection, and spiritual growth.  We don't know when he will be coming home, but they estimate sometime between the 21st and the 28th. I am feeling ready for a monastery myself.... To be honest, I'm pretty worn thin. I feel like tissue paper on a highway as I now juggle between home, UCSF and the monastery. All prayers appreciated! I was reminded by a dear sister this morning of the fact that I can't do this in my own strength. I need to rely on serious supernatural grace to carry me every single moment.

Today is Day 12.  Ian is hanging in there.  Fevers come and go.  The mouth sores are getting worse in some areas, but starting to heal in others.  I'll spare you the details, but it is a gruesome agony.  His mouth doesn't look like a mouth any more and the oat meal must go down in slow, painful increments. He is trying to find a balance of pain management that doesn't compromise his mental clarity too much.
Hopefully his counts come back soon and then those mouth and throat sores will heal quickly. It looks like they are starting to come up already, but we will need to see the trend over time for full confirmation. I'll let you know. If so, that means the graft has successfully taken and he may be released this weekend!

I'll keep you updated...

Storm!

Well, the fairly smooth waters just hit a rough patch. As I was driving home, Ian called and said he had a fever over 101 and so they are assuming there is an infection somewhere. They immediately began more preventative antibiotics, took samples to test for infection in his blood and will also do a chest X-ray to look for infection in his lungs. Soon the fever climbed to 102.3 - my heart continued to sink to the floor. The blood test results won't be back for another couple days. I have to trust and not imagine the worst. I've got to keep those thoughts and feelings in check. Take it one moment at a time.

I was about to turn around and go back to UCSF when my mom called and said Fiona was crying and crying in pain for a long time and they couldn't calm her down. It was almost an hour and a half past her bedtime. This sounded strange and concerning, so I rushed home to find they had managed to get her to sleep. She just woke up around 12:30am screaming in pain again and I eventually was able to nurse her back to sleep, but will need to get her checked out ASAP - possibly at the ER if this continues. And a trip to the ER may disqualify me from visiting Ian for a while...

So here I am at 1am, sharing with you in the middle of the storm, asking for prayer. Prayer for Ian's fever and whatever is causing it, prayer for our little Fiona, and prayer for me as I juggle all of this. I'll update as soon as I have more news, but if you could lift us up right now I would really appreciate it!

Thank you...

Update 1.1
Fiona slept well and when she woke up at 5:30 she smiled, giggled and pounced on me. I'll take that as a good sign and answer to prayer :)

Update 1.2
Ian called this morning and his fever broke in the night, so doesn't look like an infection! Another answered prayer!

Day 9: Mountain Climbing

It's Day 9 and Ian is climbing this mountain like a champ. Not that there isn't any misery involved...he can hardly swallow and pronouncing "k's" and "l's" is now too painful to attempt.  The sores in his mouth are so bad that he will probably be living on oatmeal for the next week, but he's still glowing and smiling and cheering us on as if we were the ones climbing... I love this man.

Yesterday we celebrated Valentine's Day by watching a movie together and eating Noah's chocolate chip bagels. After weeks of inquiring about bagels as an exception to the "no outside food" rule, he was finally given the OK from headquarters. Noah's chocolate chip ones are his favorite, so I was elated to find that they made special heart-shaped ones for Valentine's day!  I bought two dozen to share with Ian and the hospital staff here. Nurses poked their heads in all day saying thank you for the yummy treats :)

My love and admiration for Ian continue to grow as I watch him stand glowing in the midst of this fire. His strength and tenacity, his warm heart and unshakable faith, his perpetual smile, 

his intuitive understanding of things and people, his love for others... 

He is solid gold. 

I'm a blessed woman to be by his side. 

Thank you so much for walking with us through this. 

It's amazing to type these updates knowing so many of you are following along and praying for us. 

The Lord is listening and answering. 

He is standing with us and strengthening us in the fire.

We are so grateful!

"OBU" is Asha's spelling of "Abba" (daddy in Hebrew)

Day 7: Mama Day

Ian is definitely neutropenic now with mouth sores, night fevers, and energy lows.  Still, his spirits are up and overall he's doing really well.  Now we wait for his blood counts to come back, which will be the first sign that his brother's stem cells have grafted successfully. I'm anxious to head back to UCSF and spend the rest of the day with him. Valentine's Day post soon to come :)

Yesterday I took the girls out for a full day outdoor adventure in Santa Cruz. We needed some fresh air and romping around in creation. It was the perfect day for this mama and her girls...a hike and a picnic in the redwood forest, then hours of play at the beach!

Day 6: Still Smiling!

I brought the girls by to see Ian today, and as you can tell from the pictures he is still doing great. Amazing grace just keeps carrying us. So many prayers covering us. We are so blessed...

This last shot was taken by Asha. 

I love the joy of the moment that she captured!

Day 5: Picture Day

I just re-discovered hipstamatic, so watch out. You may be getting a steady stream of pictures the next few days.

Here is Ian yesterday morning. Doesn't he look great?!!! 

He's feeling great, too. Word this morning is that he still isn't neutropenic, though his blood counts are dropping. His mouth is a bit sore, but not too bad. Overall, he's sailing through this. So thankful!

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Here is Ian in his hospital bed, equipped with iphone and laptop, receiving encouragements from around the world.  I've never been so grateful for modern technology. See that smile?  He had no idea I was taking a picture. It's purely because he's feeling the love from one of you :)

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And now for some little people pictures, just because I'm a proud mama with two of the most adorable little girls ever to grace the planet :)

Here is Asha two years ago- her last hipstamatic photo!

Here are some pics of the girls today:

Day 3: So far, so good!

No big news here, other than the same wonderful news that Ian is doing just fine. They have found a great medication that is effectively keeping his nausea down and his appetite strong. He is almost *neutropenic, but not quite yet. We might have one more day before outside food is banished and he is confined to the hospital menu.  I've been trying to keep him fattened up with whatever his heart desires, most commonly bagel breakfast sandwiches and Togo's #24 (turkey/avocado). My mom has also done her part at fattening him up with her world famous homemade chicken strips :)

We are praying for a continued smooth climb up misery mountain. I'm tempted to give it a new name, since there has been very little misery so far! The upcoming *neutropenic state is supposed to cause greater weakness and vulnerability as well as a host of painful side effects from the chemotherapy, however, so we are still just beginning this trek and are thankful for every smooth day given to us.

Thank you all for your thoughts and prayers.  We are feeling them and will continue to keep you updated!

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* Neutropenic means he has literally no white blood cells (neutrophils) which fight bacterial and fungal infections. 

Day Zero: Update

Amazing. Absolutely amazing! Ian has a history of being highly reactive to blood transfusions, all of which have been of the same blood type until today.  We didn't know what to expect, but in spite of preventative pre-medications we were prepared for at least a bit of sibling rivalry. So there I stood, holding my breath as that wine-stained plasma made it's way down the plastic tubing and into Ian's body.  I observed his skin under the bright lights, alert for those itchy hives that inevitably appear when foreign blood comes to the rescue. We waited and waited... and nothing happened. Not a single rash. Not a single case of the shakes. He was just fine, reinforced the whole time by countless prayers and encouraging calls, texts and comments pouring in from you precious people who are walking alongside us on the journey.

We are so thankful and relieved!

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Around here, they refer to day zero as one's "new birthday"- I'm not exactly sure why they call it that, but I think I feel it in my heart.  It's the birth canal into a long, vulnerable period of time dependent on others for survival. It's the seed of hope for a leukemia-free future. It's not just a new immune system, it's a new chance of life with a fresh appreciation of each new day.  It's a day to celebrate, and celebrate we did! Here is a picture of Nurse Kristen again, but this time she is bringing Ian a mini birthday cake with a chorus of other nurses joyfully singing "happy birthday" behind her:

Can't you feel the love?  

Nurse Kristen snapped a shot of Ian and I, too. 

And I snapped a close up of the cake, after sampling a slice :)

Day Zero: Transplant Begins!

A few moments ago, Nurse Kristen hung the bag of stem cells and began the IV drip. Here we go!

The Mountain of Misery

Only two more days until the transplant. Chemotherapy ended yesterday, but the side effects are only beginning.  Ian is making his way up misery mountain. Nausea has kicked in full power. He's having a hard time eating, and an even harder time keeping food down. I've stocked the guest freezer with popsicles from Whole Foods (thanks Sunol for the gift card!) and am hoping he will be able to stomach a new genre - Greek yogurt fruit pops for the extra protein power :)


These are the more hazy, queasy days that go sort of slow, where we more consciously must put one foot in front of the other.  It took a lot of inner reserve to start out, but Ian walked 6 laps this morning!  I walked beside him holding the pink plastic puke bucket, just in case.  It feels so good to be here with him. I am infinitely thankful for my parents who have temporarily moved into our apartment and are holding down the fort with our girls. What a blessing!


Here is a little synopsis of what to expect the next couple weeks. The doctor drew a "misery over time" chart and we have barely begun the ascent. Here is the chart:

Day zero (0) is coming this Wednesday, February 6th - the actual bone marrow transplant. There is a foreboding spike that day, because often there is a shock to the system as it receives this reboot of foreign stem cells. Especially when it is of a different blood type- which is the case here with Ian's brother. Not a big deal, they say, but he could have the shakes and other unpleasant manifestations. I'm trying not to think about that.  One day at a time. As his blood levels drop from the chemo, they expect him to experience increasing weakness, nausea, and a number of other side effects like mouth sores, sore throat, and intestinal discomforts.  Although none of this is fun, it is reassuring to know these are normal and should improve once his new immune system starts producing enough blood cells.

Somewhere around Day 7 (February 13th) they expect Ian to reach the peak of misery mountain. Hmmm... Just in time for Valentine's Day.  Honestly, I feel like every day is Valentine's Day around here. I've never felt more love and gratitude for this amazing man. He is a gem. He is so full of love, and so truly lovable. Even in his misery, he is thankful and joyful and makes the nurses laugh. I'm so grateful for every day, for every moment that he feels well enough to take my hand, listen to my heart, and make his silly jokes!

I am always impressed by how things can seem so terrifying from a distance, but once we are in the midst of them there is this amazing grace that carries us through.  Your prayers and words of encouragement are priceless. Ian received a couple texts recently that were deeply fortifying.   Please feel free to send messages any time to Ian via phone, text, email, or snail mail.  He may not be able to respond immediately, but I promise it will brighten his day. He hangs on these words of encouragement, especially during the low times like now.  I have written many of them down for him to remember again and again.

Thank you to each of you who have supported us in so many ways. I'm humbled and awe struck! This could be such a stressful time, but I feel deep peace and assurance knowing that all is taken care of and will be taken care of. With the strength God provides, we will climb this mountain and all the mountains ahead, one step at a time. And I know at the end of this trek we will stand amazed and thankful for all the Love and Beauty we would have missed otherwise.

100 Days of Prayer

Nausea is starting to hit, but overall Ian is doing well with the chemo. Just a few more days until the transplant. I know so many of you are praying regularly for us, and I can't thank you enough! In addition to your spontaneous prayers and well wishes, I think it would be really encouraging for Ian to have each day from transplant for the first hundred days covered by prayer. I'm not expecting 24/7 coverage, but just keeping him in thoughts and prayers especially throughout that day as you remember. If this is something you would like to do, please leave a comment on this post with the date you are signing up for. I will check both the blog and my facebook post for sign ups and add the names to this post here, so it will stay as current as possible. On the day you have signed up for, if you could also send a comment/text/email/phone message to Ian letting him know you are praying and any words of encouragement that would be wonderful.

Also, here is the address if you want to send him a card at the hospital, any time. He should be here until the end of February:

Ian Brown
C/O UCSF Medical Center, 11 Long
505 Parnassus Ave
San Francisco, CA 94143

Thank you!

Sign up:

1. Feb 6 (Transplant!): Scott & Kim Reno

2. Feb 7: Annie Stepka

3. Feb 8: Linda McMasters

4. Feb 9: Amy Yun

5. Feb 10: Hope Brownlee

6. Feb 11: Jacob Wickersheim

7. Feb 12: Erin Adams

8. Feb 13: Scott & Ronee Curry

9. Feb 14: Leilah Krounbi

10. Feb 15: Bob & Lisa Ladwig

11. Feb 16: Beth Clendenin

12. Feb 17: Dylan Clendenin

13. Feb 18: Kristine Mittmann

14. Feb 19: Beverly Silva

15. Feb 20: Shanti Dickson

16. Feb 21: SueAnn McCullough

17. Feb 22: Ute Eichholz

18. Feb 23: Renee Rushing

19. Feb 24: Kinjal & Himanshu Shah

20. Feb 25: Bartlett Family

21. Feb 26: McMaster Family

22. Feb 27: Jennifer McPherson

23. Feb 28: SueAnn McCullough

24. Mar 1: November Hammond

25. Mar 2: Alex Lerza

26. Mar 3: Grace Wickersheim

27. Mar 4: Jesus & Mary Carrera

28. Mar 5: McMaster Family

29. Mar 6: Candace Rodgers

30. Mar 7: SueAnn McCullough

31. Mar 8: Elizabeth Thompson

32. Mar 9: Alex Lerza

33. Mar 10: Candace Rodgers
34. Mar 11: Yifeng Liu

35. Mar 12: McMaster Family

36. Mar 13: Jacob Kimball

37. Mar 14: SueAnn McCullough

38. Mar 15: Sara Crompton

39. Mar 16: Alex Lerza

40. Mar 17: Ivanna Rook

41. Mar 18: November Hammond

42. Mar 19: Beverly Silva

43. Mar 20: Osanna Bertsch

44. Mar 21: SueAnn McCullough

45. Mar 22: John McGee

46. Mar 23: Alex Lerza

47. Mar 24: Cindy Parsons

48. Mar 25: Bartlett Family

49. Mar 26: Kim & Ron Gagosian

50. Mar 27: Jennifer McPherson

51. Mar 28: SueAnn McCullough
52. Mar 29: Jen Kibler-McCabe
53. Mar 30: Alex Lerza
54. Mar 31: The Kozdons
55. Apr 1: Jesus & Mary Carrera
56. Apr 2: The Dickson Family
57. Apr 3: Osanna Bertsch
58. Apr 4: SueAnn McCullough
59. Apr 5: The Dickson Family
60. Apr 6: Alex Lerza
61. Apr 7: Jen Kibler-McCabe
62. Apr 8: Kim & Ron Gagosian
63. Apr 9: The Kims
64. Apr 10: Candace Rodgers
65. Apr 11: SueAnn McCullough
66. Apr 12: Josh & Kristine Mittman
67. Apr 13: Alex Lerza
68. Apr 14: Jen Kibler-McCabe
69. Apr 15: Jen Kibler-McCabe
70. Apr 16: Sue Sutherlin
71. Apr 17: Elizabeth Thompson
72. Apr 18: SueAnn McCullough
73. Apr 19: Beverly Silva
74. Apr 20: Alex Lerza
75. Apr 21: Rebeca Groomer
76. Apr 22: Chris & Miranda Hale
77. Apr 23: The Kims
78. Apr 24: Osanna Bertsch
79. Apr 25: SueAnn McCullough
80. Apr 26: Jennifer McPherson
81. Apr 27: Alex Lerza
82. Apr 28: Josh & Kristine Mittman
83. Apr 29: Chris & Miranda Hale
84. Apr 30: The Kims
85. May 1: Jesus & Mary Carrera
86. May 2: SueAnn McCullough
87. May 3: Chris Stahl
88. May 4: Alex Lerza
89. May 5: Josh & Kristine Mittman
90. May 6: Chris & Miranda Hale
91. May 7: Rachel Cote
92. May 8: Kim & Ron Gagosian
93. May 9: SueAnn McCullough
94. May 10: Candace Rodgers
95. May 11: Alex Lerza
96. May 12:
97. May 13:
98. May 14: Amy McGuire
99. May 15: Beverly Silva
100. May 16: SueAnn McCullough