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. 

URGENT PRAYER

I just got a text from Ian. He had a bad headache all night, with low platelets and high blood pressure. They are concerned about a possible brain bleeding. He is going in for a CT Scan soon.
Please PRAY!!! Ian asks specifically that he will be healthy enough to be a good dad to the girls, once all this is through. My heart is breaking....oh Lord please protect him and heal him quickly.

The Long Wait...

It is a sleepy Monday afternoon, and thankfully pretty boring around here. Lots of just waiting around. Ian's intestines are clearing up (yay!!) and he wants to try the exercise bike today, so that is good. His hair started to fall out a few days ago...his beard is patchy and pretty much gone now. His liver tests are causing red flags again, so they are trying to figure out what medication might be causing the trouble. Also the steroids they have been giving him to prevent reaction to blood transfusions have been causing high blood pressure, so they are starting to give him medication for that. Crazy how many pills and bags of chemicals his body has absorbed these past few weeks. We plan to do lots of juicing to detox once he is back home...

Today is the fourth day of giving him the growth hormone. No growth detected yet. They expect to see his white blood cells start to return sometime in the next four days. Once he has over a thousand white blood cells and is producing his own platelets, he should be free to come home. We keep hearing different accounts of how long this break will be, but it is now looking like two to four weeks.

For clarification - I had written earlier about a biopsy a few days after the first round of chemo to see if he needed a "bonus round." Turns out this is not the case. They decided to give him the highest, strongest dose of chemo possible since he is young and strong, and when they give this maximum dose they don't even do the biopsy because everything is surely destroyed. So thankfully, no bonus round...

As for the original biopsy results, we are still waiting for the full report. Initial results are looking like he is in the intermediate risk category, and molecular tests should show further high or low risk within that general intermediate category. These will all be taken into account to help the doctors decide further treatment.

Prayer Points:

* Please pray for Ian's liver, that they might quickly fix whatever is causing trouble.

* Please pray for protection of his body while his blood pressure keeps rising from the steroids.

* Please pray that his body will be able to quickly restore white blood cells and platelets. Usually platelets take the longest, so please pray especially for those. And again, please pray that ONLY healthy cells grow back and no cancer is detected when they do the biopsy in a couple weeks. A clear biopsy after this chemo session is one of the main prognosis factors for his leukemia. But of course, no matter what the results, we are setting our hearts to focus on the Lord and not the statistics...

* Please pray wisdom for the team of doctors working on Ian's case. Pray for Divine guidance as they interpret the test results and make future treatment decisions.

* Please pray for endurance for Ian on this last leg of the treatment. Days and nights are passing so, so s...l...o...w...l...y.. for him. Pray that Jesus would be close to his heart and mind, strengthening him moment by moment to finish this race.

Thank you so, so much for walking alongside us through this. We do not have time to reply to each of your comments, but please know our hearts are so encouraged to know you are following our story and keeping us in prayer.

Today's Update

* The liver ultrasound yesterday came out totally normal! Thanks for praying...

* Ian is still walking! Here's proof:

* Ian had to change rooms yesterday because he was in the only handicap room on the floor. As a condolence, they made sure to give him a room with the best view in the house! Look closely and you can even see the golden gate bridge in the middle.

* After a rough night that he wasn't sure he would survive, Ian is doing much better today.  I'm going to try to stay by his side, day and night, for as long as I can. It seems to really make a difference. Lots of worship music and therapeutic massage. Finished up Steven Fry in America. Ate some strawberry coconut popsicles together. Shared our hearts. It has been a sweet day.

* Fiona is doing great with my parents and Asha is still in Sacramento, staying with one of the most loving, creative, generous and all round amazing families we know.  Below are some pictures from their trip to the aquarium and back at their home...Needless to say, I think Asha is doing just fine :)

Prayer Points:

* Please pray that we will get good rest tonight. I didn't sleep much the last two nights. I think it might be time for another little blue pill.  Ian slept better last night, but still was up about every hour for one thing or another. 

* Please continue to pray for the infection in his gut. He is still running to the bathroom frequently, but maybe a little less than before. Pray quick and complete healing of his intestines. 

* Please pray for the Lord to continue to guide me in knowing how to comfort and support Ian, moment by moment. I would say that physically he is doing much better, but psychologically he is worn so thin...

* Today they began giving him a daily growth hormone injection to help his white blood cells grow back. We heard originally that they would do another bone marrow biopsy at the end of this week to see if a bonus round is needed, but it turns out they gave him such a high dose of chemo that they won't do the biopsy. Please pray that the chemo was totally effective and only healthy white blood cells grow back. Please pray they grow back quickly... The more white blood cells, the stronger his immune system and the better he will feel overall. If his marrow is restored quickly, he may even be able to come home by Christmas or soon after (!) 

* I found out today that Ian will only be home for a week or so, then back in the hospital for another month of chemo. I cried when I heard this, as I had previously heard we would have him home for a few weeks. But I guess this leukemia moves very fast and they don't want to let it take over again. Still waiting for full results of cyto-genetic testing that will determine the details of prognosis and further treatment. Please pray in advance for a sweet time together as a family during that week he is home. I think it is going to be confusing for Asha especially to have him home for such a short time and then gone again. Please pray for the Lord to prepare Asha and give us wisdom to know how to help her process all this.  She seems to be doing really well, but under the surface I know there is a lot brewing... But I must trust that the Lord will use this to make her into a stronger, sweeter, more beautiful little woman in the long run.  

Thank you!!!

More Bright Spots

I feel like we have turned a corner. I feel like there is hope rising in my heart that we will get through this. I am starting to feel the lightness from layers of dust and stubble being burned away and glimpses of refined gold shining through. And I'm definitely feeling loved and supported...

Here are a few more bright spots the last few days:

* Ian is able to eat real food and hold it down! He still has the intestinal bug full force, but the nausea is pretty much gone.

* They have been giving him something to help with the water retention and that has helped him to breathe easier and feel a bit less bloated. This is a huge relief (especially the part about being able to breathe easier).

* Netflix! Ian is now sometimes feeling well enough to watch movies...Steven Fry in America, to be exact. I'm guessing he has finished all six episodes by now, but it has been a bright spot for both of us to sit and watch it together...it's almost like a going out on a date :)

* Ian started walking laps this morning! He has tried so many times. I've pulled out the walking shorts and shirt, getting everything ready... only for him to find himself too weak and dizzy to walk out the door. But this morning he texted me: "Bring more shirts. I'm walking again. And it makes all the difference!! I must stay active!!" That's my Ian. Super bright spot!!!

* I came home last night to a big box by the door, addressed from the Warmth Company. I wanted to rip it open then and there, knowing it would contain something beautifully special, but didn't want to wake the sleeping baby next to it. So this morning I opened it to find the most lavish box of love...a beautifully woven wool blanket, candle, soap, lotion...a precious little bunny for Fiona, and a wrapped gift for Asha with the most lovely rainbow knitted bug doll on top. Christmas shopping is the last thing I'm motivated to do, so having such a super special gift to unveil for Asha Christmas morning is a definite bright spot!

* As most of you know, I was diagnosed with an intense form of thyroid cancer 5 years ago when Asha was a baby. I'm a survivor (by God's grace!) but have to continually be tested the rest of my life to make sure all is clear. I was past due for blood work and finally got that squared away last week. My doctor called yesterday to let me know my cancer markers remain at zero and all my numbers are perfect. Thank you Lord!

...And now for some prayer points:

* My parents are feeling better, but my dad continues to have a bad cough. My mom's fever broke that night and she has been feeling better ever since, but I forced her to just rest yesterday.  No evidence of sickness in me or the girls. Please continue to pray for health for all of us on the germ chain leading toward Ian...

* Ian just had a liver ultrasound tonight. I'm not sure why, but I'll find out soon. Please pray everything comes out clear...

* Please continue to pray that the intestinal infection clears up quickly. They gave him a new medication that takes a while to see results, but they said it should clear up in a couple days...

* Please pray for wisdom and sanity for Ian as he waits out this low energy period. Suddenly finding yourself trapped on a hospital bed for weeks and weeks is quite a challenge on every level.  His brain gets fuzzy and confused, making it overwhelming to know what to do next...try to eat? try to sleep? try to walk? take a shower? Please pray peace for his heart, clarity for his mind, and guidance for each moment along this rough road. He has about another week before his strength is supposed to start returning.  I am feeling a turned corner, but he isn't. He is seeing a himalayan mountain and feeling no strength to climb. He really is suffering through this and it breaks my heart. Please pray for more bright spots for him, for deep hope to compel him to keep putting one foot in front of the other...

Thank you!

Bright Spots

Here is a list of some bright spots this past week that have helped carry us along...

* Taking the girls to the beach Sunday - watching them squeeze sand between their toes, breathe fresh ocean air, and search for treasures on the seashore... 

* My best friend is back! Now that the chemo has subsided, Ian is on less medication and is significantly more alert. We have been able to have a couple very sweet and connecting conversations about what God is doing in our hearts through all of this.  What a treasure these moments are...

* Foot massage wins again! It is deep consolation to be able to do something to help relieve Ian's suffering.  I'm so thankful to be able to comfort him by rubbing his feet once again... 

* Our friend (who had already set up a gallery of amazing art in Ian's room) recently added a new surprise - a beautiful wooden Christmas tree sculpture! No living plants are allowed in his room, so how sweet to have a tree created by a dear friend with such thoughtful care and artistic skill... 

* For many days during the chemo, the only thing Ian could stomach was canned sprite. Unfortunately, they don't carry it here at the hospital. A friend of Ian's brought not one but three large boxes of sprite, each wrapped in Christmas paper complete with a bow.  How can we not feel the love???

* My mom came down with a 101 fever tonight and left a phone message wondering what to do, rather concerned. My heart sank.  Asha had spent the day with some dear friends at the Monterey Bay Aquarium and immediately the next message I listened to was from them saying Asha wanted to go to their home for a sleep over.  So Asha will be having extra fun with good friends while my parents recover from their bug. What perfect timing! (And incredibly supportive friendship, considering they live in SACRAMENTO!)