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!

*******

* 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!

*******

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

A Happy Ending

I have to share the happy ending after my post yesterday. I completely melted down crying for a while, then pulled myself together to go upstairs to Ian's room and see how he was recovering. When I entered the room, there he stood - strong and smiling - with arms out to hug me while I cried some more, this time for joy! The nurse even gave us secret permission to go out for an hour and have dinner together! We walked to the closest restaurant that was open and then finished with a gelato on our way home. It was so sweet to get that extra little bonus round of time together.  He even felt good enough to bound up the 11 flights of stairs back to his hospital room. I had tried (once) to walk the stairs and thought I was going to die half way up, so I took the elevator this time thinking I'd be waiting a while for him at the top. The elevator doors opened at the 11th floor to reveal Ian there waiting for me, not even out of breath!

That's my Ian :)

I spent the night there with him last night and was able to be with him for the first round of chemotherapy this morning. All went well. The nausea isn't so bad yet. The real weakness shouldn't kick in for another week or so. Since they changed their policy on children, I'm bringing Asha tomorrow so he can continue to read Little House on the Prairie to her while he still has energy. For those of you who know the series, they are currently about half way through These Happy Golden Years. We are still looking for a caregiver but are confident there is a match out there for us. We are feeling strong and hopeful. Thank you for your prayers!  

The Waiting Room

I'm sitting in the radiology department at UCSF, waiting while the central venous catheter is being inserted into Ian's chest. Its been a couple hours. They wouldn't let me in for the procedure, so I'm watching the fish swim around in the waiting room. This is the same waiting room where I sat with Asha toddling around, anxiously awaiting my own cancer treatment here 4 years ago. The same fish tank, the same feelings swimming around in my chest. His chest x-ray earlier today was in the same room where I just had my annual thyroid ultrasound, the results of which were perfectly clear. I beat the odds with a rare and aggressive thyroid tumor the size of a russet potato. We were carried through that storm 5 years ago, and I know we will be carried through this one as well.

But still, tears are welling up and spilling out. They just told me he is being taken to his room upstairs.  I have his huge backpack here. We somehow assumed he would be returning to this waiting room to join me with his strong arms, joking through the hallways and holding hands like we had been doing all morning.  But I'm sure he is drugged, and chemo starts tomorrow, and my old Ian may not be back for a while. And I'm grieving all this. But I know he will be back, when the storm has passed. And this storm is just beginning.

Caregiver Needed: A Post from Ian

First of all, I want to thank all of you for the love, generosity and friendship that we have received. I feel like all my needs are being taken care of through the support of dear friends and family.  

Here is an example of the surprise blessings I have received. I took Asha to meet a couple friends at work this past Friday, and instead of a few there were over a hundred co-workers with cakes and balloons and flowers and gifts for the girls and cards and a significant donation collected to help cover our costs during this time. Amazing! I feel so supported that it makes me want to work for this company the rest of my life. 

When I went for the bone marrow biopsy two weeks ago, the doctor informed me that the medications I will be on will tax my liver significantly so I won't be able to drink alcohol for at least another 7 or 8 months. He was kind enough to say "starting tomorrow" - so I called up my good friend Matt to help me "Fight the Good Fight" - all 1500ml of Belgian tripel. And we worked on a bottle of Johnny Walker blue label. Bromance, pure bromance.

Whats next:

Here is a sketch of my post BMT (Bone Marrow Transplant) schedule. I'll be in the hospital until somewhere around the last week of February, then I'll have to be quarantined away from infections for 6 months (the first three months are the most critical). This means that during this time my family and any main caretakers will not be able to go to church or any social events where germs migrate. It is serious bubble time. I will be living in a seperate 3 bedroom condo in Sunnyvale for these first three months.

All of our needs have been taken care of except one missing piece: I still need a main caregiver to live with me for the months of March, April and May.  My wife will come over to cover night shifts and parts of the day, but since she has duties as a mother we need a main caregiver for me. When I come home from the hospital, I will be very weak and have a huge schedule of medicines to juggle as well as other serious medical assistance requirements.  The caregiver will be holding my life in their hands- missing even one scheduled medication could result in check mate.  I want someone who will be sharing life with me in a close way for those months.  The caregiver would need to move in with me and give up their public life for a while (insofar as they are not mingling in public where they can get sick). I am looking forward to this as a monastic period of life with a daily rhythm including contemplation, joy and exercise.

Room and board are covered plus a weekly salary.  If you or someone you know might be interested then let us know.

Below is the caregiver job description from our BMT manual:

• Provide emotional support
• Provide physical care
• care of the central venous catheter
• administering medications, both pills and injections as directed
• recording and keeping track of which medications were taken and when
• administering medication and/or fluids by intravenous pump devices
• assisting the patient with shopping
• Gathering and reporting information
• The caregiver will be given information about signs and symptoms to report to the medical team. It is important that the caregiver be able to identify changes in the patient's condition and report them promptly
• Keeping family and friends up-to-date on the patient's condition
• Maintaining a clean home environment after discharge from the hospital
• Preparing food for the patient
• Providing transportation for medical care
• Most patients require frequent visits to the outpatient clinic after discharge from the hospital. Patients should plan on 2 to 3 visits per week, lasting 3 to 6 hours each visit during the first 3 months after their BMT...Often patients have complications within the first 6 months, which require re-admission into the hospital. All patients require more frequent visits to the clinic following a hospital admission.

-Ian

PS. Some very generous friends have lent their condo to me for this time!  A lifesaver!  A gift and blessing.
PSS. Thanks for the Belgian Tripel Jacob. ;)

Good News, Hard News, and the Long Road Ahead (BMT)

This is Ian and Christy’s friend Amber again.  I spoke with them a few days ago and wanted to share a few updates—bright spots, as Christy says, first, then treatment plan details.

In true Ian form, when I asked him how he was doing he exclaimed: “Great! Well, today, great!”  He had jogged two and a half miles with his friend Alex the day before which, while less than he could do a few months ago, is not bad for a dude fighting blood cancer!

The previous couple of days he had been on lots of walks with the girls, read Little House on the Prairie with Asha and played dollies with Fiona… who just started walking and celebrated her first birthday! She is a bundle of developmental milestones and joy.  Here is a picture and video of Fiona’s first chocolate and first ice-cream for her birthday:

             

Last week Ian and Christy had a very long appointment at UCSF where they learned the details about Ian’s treatment plan over the next four to five months.  They also learned that the last chemo treatment destroyed some of the alveoli in his lungs, leaving his lung capacity at 63% (80-100% is the average for a healthy adult). This may be permanent damage, so Ian is grieving this.

The great news is that Ian’s brother is a bone-marrow match! Ian had been expecting to do 3 rounds of treatment, but since a match has been found so soon, the 2nd round of chemo will be dropped.  Who doesn't want to skip some chemo?

The bone-marrow transplant has a 10-15% mortality rate in the first 90 days.  This can be said more gently, perhaps, but it doesn’t change the statistic. The first ninety days out of the hospital are critical—if he gets an infection it could be fatal. There are two major risk factors during this time: infection and Graft vs. Host Disease (GVHD). GVHD occurs when the new immune system does not accept its new home, but attacks the new body's organs - generally skin, intestines, and liver.  To avoid this as much as possible, Ian will be on immunosuppressants while his brother's immune system is adjusting to his body, which means he will basically have no immune system during this time. If he does get an infection,  it will trigger his new immune system...which may decide to fight against Ian rather than the infection, causing more severe GVHD in addition to the infection.

Click here to read more about the risks of infection, rejection, and graft vs. host disease. There are a number of plans they need to put in place, including a quarantined and clean location for him to live for those ninety days, a 24/7 caretaker, and finances to cover all of these expenses.  It is truly a grueling amount of preparatory work. Financing the seclusion and care will be difficult. The reality is sitting heavy with them at moments. And in other moments they are just enjoying their time together and preparing for the road ahead.

Christy’s parents have returned to the bay area and will stay with Christy and the girls for the next four months.  And right now Ian and Christy are exploring caretaker solutions and looking for a suitable space for Ian to convalesce when he comes “home” in late February or early March: quiet, secluded (the risk of infection is very high), inexpensive, and as close to Christy and the girls as possible.  Some options are on the horizon via some gracious friends, they'll know more if it will work out in a few days. Please pray that a situation that meets all their needs will quickly come to pass.  To aid in your prayer, click here to learn a little more about the specs for Ian’s post-transplant needs.

And so that you know what to expect in the course of Ian’s treatment, here is a rough sketch of the plan, starting with January 29^th when Ian heads back to the hospital. 

·         5 day chemo regiment begins (Jan 30)

·         2 days to recover (Feb 5)

·         Transplant (Feb 5)

·         2.5-3.5 weeks of recovery in the hospital, waiting for bone marrow to begin producing blood (~ likely release between Feb 21 - Feb 27)

Sometime in the next week we’ll put up a post about all of the ways you can help—whether through practical means like giving blood or finances, or through prayer and moral support—you’ll get all the details soon.

Thank you for your attention and care to Ian, Christy, Asha, and Fiona in this time. Your friendship and support are an enormous blessing to them.

Warmly,

Amber

Status Update

It has been a couple of weeks since I've posted, so tonight seems like a good time to share the latest news and prayer points for those of you who are following along:

* Ian has been home for two weeks, and it is looking like we will have him home another week or so more. It has been so sweet having him here!  He has lower red blood cells than usual, so he gets worn out quickly and has to rest frequently. Other than that he is feeling pretty normal. He is actually out doing yoga with a friend tonight for the first time since his illness. I love this man. He is a fighter!

* Ian has resumed the tradition of reading Little House on the Prairie with Asha. They are currently blazing through the seventh book of the series, Little Town on the Prairie. He also took Asha out on a very special father/daughter date a few days ago. In the hospital Ian had told her about this date he was planning, and she asked if they could wear their "finest cloths".  Oh yes, he assured her they would. And here are a couple pictures to prove it:

Photo Bomb

* Even little Fiona is feeling the joy of having Ian back. She does the "Abba" (daddy) sign all day long, as if to announce the news again and again that "Abba is home!" She started walking a good number of steps within a day or two of him being here, and the ultimate sparkle in her eyes when he smiles at her is priceless.

* UCSF is pretty swamped right now. The bone marrow biopsy we have been praying about, which was supposed to happen about a week ago, is scheduled for next Tuesday. They expect to admit him and start round two of chemo shortly after that. We aren't complaining about the extra time we are getting with him! Please continue to pray for clear results from that biopsy.

* We heard today that Ian's brother is likely a match, but not his sister. They are starting round two of testing his brother's blood and he will have to fly out here for further testing then return a month or so later for the actual transplant if he is a match. Please pray he is a perfect match. Also, please pray peace and smooth travels for him - he is a very busy father of two himself and this will be quite a stretch for his already thin schedule. Please pray a red carpet of peace and blessing will spread out before Ian's brother each step of the way as he serves us in this crucial moment. 

* I am sick today. Throwing up, icky, feverish sick. Please pray I recover super fast, and that nobody else catches it.... Especially Ian. We really don't want his fragile immune system compromised and his return to the hospital to come sooner than necessary.

* Ian is still glowing. Seriously. Miraculously. He is being carried through this with a very deep, growing, shining faith. I am so thankful and encouraged, as are many others.

* I have been worn pretty thin. Sleeping troubles on and off. Anxiety levels rising and falling depending on my ultimate trust levels at the moment.  We have a long, long road ahead. Please pray I would keep my eyes fixed on the Lord, His compassionate presence with us, and His strength to fight for us. Pray I would not fear or be discouraged by the giants in the land ahead.

Thank you so much!