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!

Home Sweet Home

Yes it's true, it really is true...Ian is home! The hospital just changed its policy on children and now visitors of any age are allowed, so Fiona and Asha came with me Christmas morning to pick him up. After a month of showing pictures and telling stories to all the nurses about our girls, we finally were able to introduce them in person. Asha was as loquacious as ever, asking questions and entertaining all the hospital staff and patients in her path. She is such a little ray of sunshine!  Ian was finally released Christmas afternoon and we came home to celebrate all together. Lots of joy, so many unexpected gifts, so much generosity from so many friends. We were led to tears, overwhelmed by the love.

I wish I had snapped more pictures, but we were enjoying the moment too much. Here are a couple shots of Ian opening a gift from Asha and I -  a remote control "helicopter of love" (that was what he had named the helicopter we got him last year, which he played with until it literally fell apart).

While in the hospital, friends had brought Ian an impressive spread of pastries from two amazing San Francisco bakeries, Tartine and Tout Sweet. Also some carolers had sang through the halls passing out mugs full of chocolates. Asha's eyes grew wide as she surveyed the buffet of sweets in Ian's hospital room. She and Ian schemed up a plan for a very special tea party together once they got home, and quite the tea party it was!

These moments having Ian home are precious, so very precious. So unless there is news, I will probably not be posting much for a while. Ian should be home for at least two weeks and I want to savor every minute! Please continue to pray for this next biopsy to come out cancer free, and for a bone marrow match to be found in a timely way (and that it would be a perfect match that his body will receive smoothly without complications). And please pray for our time these next few weeks. It is so sweet to have Ian home, but the joy is tinged with pain knowing it is only temporary and we still have a long road ahead. Pray for the grace to enjoy and be thankful for each moment, trusting the Lord will carry us over future mountains as we come to them.

Thank you!

Merry Christmas!

We received great news this morning... Ian is coming home for Christmas! How amazing God's timing is! Thank you everyone for your prayers...

Support System... Opportunities!

As a friend of the Brown's, I have been moved to tears--more than once--by the outpouring of love, support, and "how can we help?" comments, emails, texts, and facebook posts that have been channeled to the Brown's. As I am helping to administrate this site I am privy to much, though not all, of your enormous love and support for the Brown's. I know that they are so grateful for all of you who are reading this, all of you who are in some way a part of their support system.

Many people have been wanting to help—and with the more difficult news Christy posted yesterday, I know that this desire to help is only growing.  Read on for some ways to support Ian and family (either directly or by inspiring hope): give blood, get tested for match-ability for the national bone marrow database, and other ways to practically love and encourage them in this time.

Blood Donation

During busy, harried, cold times in the year—blood donations are down. When blood donations are down people in need suffer. It’s a relatively simple procedure to give blood and you can do it all over the place. It’s a radical act of life in this Christmas season. And also blood is red, which is festive. So, ‘tis the season.

How to donate to Ian’s hospital (which will help Ian and/or his floor mates):

·         To make blood or platelet donations (Ian will need both) at Ian’s hospital, click here for information on where the hospital is, click here for information about how the giving and designation works, click here. If you are the same blood type, you can actually designate donations to him. And if you are not the same blood type, welp… you can care for someone, like him, who needs blood. His blood type is O positive BUT note that platelet donations do not require an exact match.

·         Make sure to designate, at the center, that it is for Ian Brown.

How to donate, generally (as a radical act of hope, and to show solidarity with Ian): 

·         Click here to find locations near you to donate blood through the American Red Cross. Donate now and donate soon to help with holiday and winter blood shortages.

Bone Marrow Donation

Because of Ian’s new diagnoses, a bone marrow transplant is going to happen.  As Christy mentioned in the previous post, the most likely match will be one of his siblings.  There is also an amazing database of people who have committed to be a donor if they match someone in need of a transplant.  Here’s the great news: you can join that database! 

1. 1.   While it is unlikely that a friend will be a match, it isn’t impossible.  So there is reason number one to join the “Be the Match” database. (And if you are joining for this reason you should be tested for match-ability ASAP.  It will likely be in about two months that a transplant is needed and it takes that long just to get the results back.)

1. 2.   The second reason is that even if you aren’t a match for Ian, you could be a match for someone else’s father, son, brother, friend—and that would warm Ian’s heart. And things that warm hearts produce hope. And hope cannot be in short order in a time like this.

How to:

• The test is a simple cheek swab (note that the information gathered in this database is HIPPA protected and cannot be shared with any outside person without your consent) and there are two ways that you can be tested:

1.    Order the cheek swab kit through the registry website. Click here to do so.  When it arrives you should complete the kit and return it as quickly as possible. Note that they request a donation to send you the kit—they will send and process the kit without a donation!! but if you have a few bucks, they will certainly go to good use.

2.    Find a collection drive near you. Click here for drives near San Jose (note there are two next week!) and click here to customize locations for drives near you.

 Important Questions, Answered.

·         Can I register to give only to Ian if I am a match?

o   Friends cannot register in order to be tested for a match with one specific person. Rather you get entered into the pool of candidates for all those in need. And if you were a match to Ian you could donate to him. You could also be called to donate to someone else in need.

o   Immediate family members may, and they should connect with Ian’s bone marrow transplant specialist at UCSF (rather than using one of the methods above). You can reach her at:

·         Are there any restrictions on who can donate?

o   Yes, click here for a list of conditions or behaviors that may preclude you from donation.

·         What is the likelihood that I will be a match?

o   “On average, one in every 540 members of Be The Match Registry in the United States will go on to donate bone marrow or peripheral blood stem cells to a patient. We cannot predict the likelihood that an individual member will donate because there is so much diversity of tissue types in the population.”

·         What does the donation process look like if I am ever called as a match?

o   According to Ian’s bone marrow transplant coordinator, it is rarer that donors will have to give marrow and more likely that peripheral blood cells (PBSC) will be taken.  Bone-marrow transplants can be a little painful but doesn’t. PBSC is a five-day process where you come in for a shot every day for four days (and then leave, it’s apparently very quick and simple) but most people continue work and normal life. Then on the fifth day you donate, it’s quick and the main side-effect is being pretty tired.  Neither are completely risk free but the risks are minimal and very unlikely.

Practical Love

Ian and Christy’s friend Prisilla is organizing some opportunities to support the Brown’s as Ian comes home from the hospital for a week or two. Here Is a note from her: “There are a few things that would really be a blessing to them right now:

·         House Cleaning: ~ $80/cleaning

·         Meals/activities Out for the family during house cleaning: ~$50/outing

           Delivery of Fresh, organic fruits & veggies for juicing: ~$35/box

·         Oil change: ~ $50

·         Gas gift-cards: ~ $100+

·         Cash towards other needs as they arise: ~any amount

If you are interested in contributing you can do so via Paypal or Chase QuickPay, or email me if you'd like to donate some other way and pledge a specific amount towards one of these gifts. Please donate or pledge an amount by emailing me. 

Thanks for considering. Please make sure to include your name with all donations via Paypal or Quickpay (using the email address available in hyperlink above). Thanks!”

Encouraging the Browns

If you have their phone number already, know that brief texts of support, encouragement, prayer, or scripture are wonderful gifts.  Consider brief texts--without expectation of response--a good way to let them know they are on your mind and in your heart. 

Phone calls, voice mails, and emails are more difficult. There often isn't space for them to take calls and voice mails and emails can become items to-do. 

Leaving comments, prayers, bible verses on this site or on Chrisy's facebook page are also great ways to let them know you are with them.  Please note: The majority of comments have been on Christy's Facebook posts of the blog, which aren't as easily accessible to Ian, so leaving comments directly on the blog are best as they are seen directly by both of them. 

Warmest Christmas wishes to you all, as we all pray for Ian to be well,

Amber

Faith

Faith. That must be the title of this post, because everything I have to share must fall under that umbrella. We've got the final results back from Ian's genetic testing and he falls under the category of "high risk" - the worst of the three categories. So now we move forward.  Ian will come home for 2 to 4 weeks to rest, then return to the hospital for another month of consolidation chemotherapy. After that, a bone marrow transplant. They are hoping one of his siblings is a match, each one has a 25% chance. He has one brother and one sister. Please pray one of them is a match. Otherwise, they will search the database of donors to see if there is a match somewhere in the world for him...If any of you want to register as a donor, it is a simple cheek swab from what I hear. If you are called as a match for someone, I hear that the donation process is basically like giving blood. No slow drilling by hand into your hip bone and slowly sucking the marrow out, like they have already done to Ian a couple times...and it could save somebody's life.

As a side note, Ian has been really passionate about encouraging everyone to donate blood. We have experienced first hand how important blood transfusions are, and there have been times when the hospital ran out of platelets and we had to wait in hope that some would become available as soon as possible. Platelets are an especially great need. If any of you want to donate specifically in Ian's name, you may do so at the clinic across the street from UCSF Medical Center. I haven't had time to research all of this out, but regardless of donating in Ian's name or officially as part of a "blood drive" it is a definite need and way to bless others.  If you are inspired to donate blood, please let us know in a comment - I know it would make Ian happy :)

So... How is Ian doing? He is glowing. In spite of being stuck in a hospital bed for a month, away from his family, poked and prodded and examined every few hours 24/7, still hit with random vomiting and headaches and life-threatening possibilities looming constantly overhead... Ian is glowing. He is reveling in the love of his heavenly Father. He is soaking in the fact that shame has no hold once Grace has arrived. Our repeated attempts and constant failures, trying to live up to standards from within and without...all this striving that will never perfect us, never truly cleanse our souls or connect us to God. No life there, still stuck in ourselves. We need supernatural rescuing, and we need divine Relationship, not more religion. Especially now. We need to surrender our hearts wide open to His grace, His face, His sacrifice, His unmerited ever-flowing Love that pursues us relentlessly though we wander all too often from Him.  We need to walk hand in hand with our Father, moment by moment. That is where Life is at. That is where Ian is at. And he is truly living, even stuck in that hospital bed. He is living and overflowing with Life to those around him. The Lord is carrying us and will continue to do so, day by day by day...

Thank you for your prayers!

Sweet Relief!

The CT scan results were negative - Ian's brain is just fine. Thank you Jesus!!! And thank you to all of you who prayed when you heard the news...  I immediately drove to UCSF after posting the prayer call, and as we waited together for the test results I reminded Ian (and myself) that an army of people are supporting us in prayer all over the world.  I could feel the strength and encouragement sweep over him. The room felt so warm and full of love, even in the midst of waiting. Thank you all so much  for walking with us through this, and calling out to the Lord for us, moment by moment. It means the world to us, it really does.