Prepare for Transplant

A decision has been made. After seeing 5% disease in the final results of Ian's last biopsy, the doctor is confident that Ian needs a second bone marrow transplant from an unrelated donor. They had already found several good matches when they were checking the pool of donors for his first transplant, so things should move quickly from here. Please pray they choose the perfect donor for Ian - one that will destroy the leukemia completely forever but not cause too much damage to Ian's body in the process. If all goes smooth, he will start the ablative chemo in preparation for the transplant soon after he recovers from this round. That gives us a countdown of about 5 weeks. 

Ian is vomiting through each night of chemo. He feels the poison in his veins. He misses us and wants home food, not hospital food. The doctor isn't optimistic about him being able to stay home for long. The nadir (low point) of this chemo should be pretty brutal. We are hanging on to grace for each day. Holding on to God through these rough waters. Trusting we are being held. 

I'm still taking a lot of deep breaths, sometimes with quiet sighs of sadness. Fiona asks me "What's this, Mama?" and then she mimics the sound, the breath, and the unconscious expressions I make. It is deep emotion. It is grief. It is pain. It is silent prayer. It is surrender. It is so much, I have no words to explain.

Next Monday, Ian will have his third and final DLI (the lymphocyte infusion that smells like canned corn).  There was debate about whether or not to give it, since he's going for a second transplant. The chance of it doing anything is very low since there's been no reaction so far.  If he gets some gvhd symptoms after this one, however, there is hope the DLI may work and he won't need the new transplant.  It's a slim chance, but if there's still a chance we'd like to try. The only risk is if it causes mild gvhd in his internal organs that we aren't aware of and this weakens him for the transplant. 

Oh there are so many risks associated with the transplant.  I refuse to think much of them right now. Soon enough we will be reading the lists and signing the medical consent forms stating we understand all the myriad ways this procedure could kill him or trigger serious, life-long side effects. There will be grace for that day when it comes. 

Today I am in a warm home, typing this update while my girls sleep peacefully in their cozy beds. Today the girls and I laughed while we drank home-brewed kombucha and made our own super messy "sushi" and edamame. Today Fiona exclaimed with a huge smile of genuine surprise and gratitude, "We're still alive, Mommy! It takes for a long time for us to die!" She also begged me to pray again and again that she could see Jesus with her eyes "in real life, actually, not in my heart" and for him to hold her and heal all her owies so she never has to die. Today Asha told me that she has so much hope, that she really thinks this is just a lesson for us to learn from and that Ian will make it through this. When she saw me starting to sink as I surveyed the ominous road ahead, Asha gently reminded me not to worry about tomorrow. Today the girls played happily together for a miraculously long period of time while Ian and I talked about deep truths and hard decisions and lessons we are learning. We also sat on the phone together in silence, in God's presence, just listening. 

Today has not been easy, but we have been given grace and there will be fresh grace for tomorrow, too. And also for the transplant 5 weeks from now.  I may not actually see Him with my eyes, but I know wihout a doubt that Jesus is with us, holding us, infusing us with the grace needed for each moment. He knows us intimately and understands deeply the path of suffering. He has walked it before, so he knows exactly how to strengthen us on each leg of this harrowing journey. For this we are thankful. 

 

Chemo Update

We had a couple extra days all together at home while waiting for a bed to open up at the hospital, so we appreciated every meal and moment not knowing if it would be our last one together for a while. Yesterday afternoon we got the call that a room was ready, so we packed up and moved Ian into his new room with a view at UCSF for the next week or so. 

The doctor decided to do the same regiment as his last inpatient treatment, but a bit stronger dose. It seemed to really make a difference last time even with the disease progressing fast, so he is hopeful it might be even more effective since there is much less leukemia in his system this time around. 

We requested to do part of the treatment at home and were delighted to find out he will only need to be in the hospital 6 days for the actual chemo infusions. After that, as long as he doesn't have a fever, he will be able to "nadir out" at home (that's the term for the time when the cumulative effects hit and blood counts plummet and misery levels soar). The girls are already missing him and confidently planning how they will be big helpers and bedside nurses while he is home recovering. We are so thankful! 

On the downside, Ian is already feeling seriously awful. His chemo starts at 9pm and it finishes at 3am. That's a rough schedule for a morning person who starts fading after 8 o'clock at night. Please pray he will still be able to find rest in the middle of all this and for waves of grace to come with every wave of misery. 

Ian is planning to talk to his doctor today about big picture things like a second transplant and possible clinical trials if this chemo doesn't work. Please pray Divine direction as we explore these options ahead. 

Also, please pray he doesn't get any neutropenic fevers so he can stay home with us for the three or so weeks of recovery. 

❤️ Thank you for all your love and prayers! 

Grief, Grace, & Gold

If God collects each of our tears, then we have been filling up a lot of heavenly jars the past few days.

Ian had a bone marrow biopsy Tuesday. Full results will take another week or two, but the preliminary results do not look good. He was scheduled to start a new round of mild chemo Monday, but the "new normal" of low dose chemo at home is no longer an option. It just isn't working. The leukemia blasts in his marrow have nearly tripled in the last few months since his last treatment in the hospital. We will find out Monday what his doctor decides the next steps should be, but we already know it will begin with heavy inpatient chemo. He may need a second bone marrow transplant from an unrelated donor. I can't even think about this, though. We are only given grace for today.

I'm taking a lot of deep breaths. I'm crying my heart out a lot, too. Prayers for healing are rising continually from the flame of my heart. Ian has thrown out little hints the past couple days, but last night he sat Asha down and shared the heavy news. We cried and prayed and held each other and cried and prayed some more.  It was heart breaking and honest and beautiful.

Fiona didn't want anything to do with our conversation. She played with the kitty, built with her legos, and rattled and plucked instruments to keep herself distracted. She broke into tears at bedtime though, afraid of everyone dying and leaving her all alone. "Why do we have to die? What does it mean to die? I don't want to die!" These were the questions and fears she wailed over and over in the midst of grieving tears and sobs. Deep breath. I gently rubbed her back, holding her close in my arms. We talked of our great, great, great Nana and Grandpa, Adam and Eve. We talked of Jesus and the hope of heaven. We talked about her Grandpa, my daddy, who is with Jesus now and has a new and better body that won't ever get sick or hurt or die. We talked of the peace of heaven available for us right here, right now, on earth in these bodies. I spoke prayers over her for divine comfort and peace and presence and protection.  Oh this is not easy, and I don't see it getting any easier in the season ahead.

Please pray for us.

There has been much grace in the midst of our grief, however.  I somehow knew a week ago that this was coming. I could see in the color of his face and his cough and his energy level that something was not right.  I didn't dwell on these things, which is a miracle in itself, but they definitely helped prepare me for the news. They prodded me to prioritize time with him over the girls and pursue some deep, difficult, much needed conversations.

I recently read something about the pot of gold at the end of a rainbow having a seed of truth in it. When our tears and the storms of life meet intentioned surrender to the Loving Light of God, this is where that pot of gold is made. This is where the metals of our souls are melted and refined to be used in the beautiful and mysterious artwork of God. We believe His hand is upon us, we feel it deeply.  He loves us,  He wants the best for us. We don't understand, but we are taking refuge in Him. We are walking through this together, with Jesus, one day at a time. We are finding Divine grace for every moment.  There are tears and there is very real grief, but there is also an amazing outpouring of peace and joy and gratitude and comfort as well.

Please pray for us as we navigate the road ahead. Ian will be in the hospital at least another month away from the girls, and I will be commuting back and forth. My mom is planning to move in with us during this season to help out.

Please pray for the girls as they process all of this - and wisdom for us to know how to answer their big questions and how to comfort their hurting hearts.

Please pray for Divine wisdom as Ian's doctor decides the next steps. It is more art than science at this point. As I have mentioned before, there aren't a lot of studies because very few high risk AML patients survive as long as Ian has.  At diagnosis, he had a 5% chance of surviving 2 years. This thanksgiving he will have made it 3 years! We are so thankful for each of these precious years given to us.

Please pray for Ian to totally make it through this against the odds, for all of this to end in a glorious miracle and for our whole family to walk out of these flames more strong and sweet and alive than ever.

Best Nadir Ever

So far, so good. Ian finished up another round of chemo Monday and is currently at the nadir - the lowest point where the all the effects of the chemo like low energy and blood counts really kick in. Yesterday, Ian spontaneously proclaimed "Best nader EVER!" (perhaps in reference to our children's spontaneous outbursts upon discovering they will get ice cream or a play date "this is the best day EVER!!!"). He has been a bit tired the last few days, but overall he's sailed through this one so far.  He is still pursuing art with a goal of "a little bit every day".  Here are a couple sketches of Asha from last week that I adore: 

Ian also had a second DLI (Donor Lymphosyte Infusion) Wednesday, which went smooth other than the quite pungent, lingering odor of canned creamed corn in our car and home. Apparently they preserve his brother's T cells in the same potion that they preserve corn. It is eliminated over a number of days through the breath - they actually dispense breath mints at the infusion. Ian experiences it as more of a "ketchup/tomato soup" smell/taste, but it is full power midwestern canned creamed corn to me. One of those very strange and unexpected side effects...

I have been doing really well through this round.  I even canceled our meal registry because we are doing so well.  We have hit that level of "new normal" where I don't feel like I'm performing surgery every time I cook for Ian or do his laundry. With the awareness that we are in this for the long haul,  I have also been putting extra energy into taking care of myself. Since Ian is a morning person, he has weekday breakfast duty for the girls so I can get some quiet time, exercise, and catch my breath before the school day begins. This has been a wonderful, much needed infusion of soul and sanity for me. 

As for the girls, they are on cloud 9 with our new kitten. To be honest, I think I am too. His name is Asher, and he is straight from heaven. He is the perfect combination of playful and cuddly. We are in love!

Last weekend we had the best time all together in Sacramento with the Goodmans. I cannot express how much of a blessing their family has been to us on this journey. They joyfully embraced our girls for days (even weeks!) at the drop of a hat and continue to remind us they are available if things get crazy again. They are pure, priceless gold. 

If you have ever felt like you wanted to support us in some way but didn't know how, here is a simple little thing you can do. Chrys has recently designed a beautiful website for their plumbing business, but their listing is so many pages from the top that they get pretty much zero traffic and so business is slow. I try to google search them from each of our devices as often as possible to try to help, but what they need is traffic from many different sources. Would you mind doing a quick search for "plumbing Folsom" (or any of the keyword combinations given below) and scroll until you find goodmanforthejob.com and click on it? It only takes a minute, but it would really mean the world to me if we could help to get their website bumped up to get more traffic (and business) for our dear friends who have sacrificed so much for us. Below are some links to click on directly. If you have time to click one or more of the links and also do a search using those keywords and click on their website, that would be wonderful. Even better, if you live in the Sacramento area and are due for any plumbing or water heater/purification services, check out their website and give Papa Jacob a ring : )

Like them on Facebook!  www.facebook.com/GoodmanPlumbing

Links to click:

Goodman Plumbing, providing professional plumbing services,

water heater repair & installation  (including tankless water heaters), water filtration & purification, and more!

Search for their website, goodmanforthejob.com, using any of these keywords: 

plumbing folsom, plumbers folsom ca, water heater replacement folsom, plumbing roseville ca, plumbers roseville ca, water heater replacement roseville ca, plumbing el dorado hills, plumbers el dorado hills, water heater replacement el dorado hills, plumbing orangevale, plumbers orangevale, water heater replacement orangevale

And by the way, Chrys is also an amazing henna artist. Look at our beautiful feet! 

Chemo

Dear blog,

I really don't like taking chemo.  I started a new round this week.

yuck.

-Ian

Ps. I love my life.  I've been drawing.  Here's one of the waiting room at the UCSF clinic where I get my chemo:

This weekend I got to get up to visit friends in sacramento, and play some games and generally forget I have cancer.  It was great!

I got to work some wood in the shop, and I collected a nice bag of wild "Black" (California) walnuts for making walnut ink (for my art).  I'll be doing that in the next week or two.

On Monday I got my chest augmented with silicon implants.  ;)
That came in the form of the white double lumen port you see in the below picture with the two silicon lumens (there's a single lumen port in the picture too, but I didn't get this model).  This is there so that the nurses can get an IV started easily, but it's subcutaneous so I can go in the water, unlike the line I have had in my arm for the last months.

 I also got to go for a hike with Asha on Monday:

Birthday plans & future plans

Tomorrow (Friday) is Ian's birthday, and we have some super exciting news. We will be bringing home Asha's birthday kitten, a pet she's been praying for and begging for many years. She picked him out a couple weeks ago, but he had to be 2 months old before leaving his mama. Tomorrow is the big day he comes home to be part of our family, and it should add some extra birthday sparkle to Ian's day as well. Here is a picture of our adorable future housemate:

As for future plans, it looks like a minimum of 6 - 12 months of treatment. Possibly only 5 more rounds to go if there is no more cancer found in his next biopsy, but his doctor really feels like a year would be best. Since the leukemia was undetectable last time yet still returned two years later, he may also need to do some maintenance treatment for the rest of his life. 

Thankfully, the chemo he is doing is on the lower end of toxicity. Our first round outpatient went super smooth, except for Fiona's sickness and the stress of maneuvering in-house quarantine. He had very little nausea and even the neutropenia was mild, though it is still lingering.  He has even been able to pursue art during the treatment. Here's a beautiful drawing he made for me the other day:

Ian is actually a quite gifted artist, but he hasn't pursued the arts much at all since taking the computer engineering route in college.  Now with months of chemo ahead, he has the time (and so far, the energy and inspiration) to pursue these interests. This makes me very, very happy :)  Another positive note is that he can get the treatment at a local hospital so we don't have to commute (or move) to San Francisco. All of these things make the mountain of chemo ahead feel less treacherous. 

We are still processing what all this means for our family and how to make it as healthy as possible for all of us. The girls need social interaction, but it seems like every family with kids we know in the area has had some illness that keeps us from being able to get together. I'm praying our new furry friend will be good therapy for the girls and not too much extra stress. It does complicate our ability to road trip between rounds of treatment. I'm also allergic to cats, but this is a Siberian hypoallergenic kitten. I had no reactions when we met and played with him a couple weeks ago, and I've spent over an hour at a Siberian breeder's home filled with cats and had no allergies. We have a three day trial period and I'm going to sleep in the same room with him to see if I have any reactions. Hopefully not!

I'm thankful to say my energy has improved by leaps and bounds since my last post. I'm convinced your prayers have made the difference. Now if you would please pray for my stress level, I'd really appreciate it. Fiona has had all kinds of mystery aches and pains and mouth sores this past week, and I was convinced on Monday she had hand, foot & mouth disease. The pediatrician gave her a clean bill of health, however, so it looks like that storm has passed. I'm still feeling tremors of stress though, like aftershocks from a giant stress earthquake. I carry so much of the weight of things here in our home, it can feel way too much sometimes. We've really let go of worrying about tomorrow, but these days I feel like the troubles of the day are so, so tempting to freak out about. And stress just kills my ability to connect and enjoy this time with Ian and the girls.  I need supernatural grace to walk in relaxed trust moment by moment, to let Jesus carry these daily burdens and stresses. I feel like I'm in serious training on so many levels. 

Well, that is the Brown family update for today. Thank you for following our long journey and praying and caring for us through all of these ups and downs. It means so much to us ❤️

A long, long, long road

I've been wanting to update you all for a while now, but life has been full and my energy has been super low. I'm thankful to say Ian's liver has held up and he's been doing great, eating well and staying strong. The three flights of stairs to get into our home is a good built-in work out, and he's been walking our neighborhood a bit too. So much better than being confined to a hospital room! 

The girls came back from Sacramento Thursday, but Fiona became full power sick with a snotty, bubbly nose in addition to her horrible cough so she was quickly moved to my mom's house until she recovers. I took her out for a date the other day and was giving her options of places to eat, but she only wanted to eat all together as a family at our table at home :(  

Asha, on the other hand, has been enjoying being the only child again and is getting really good at beating us at the Monopoly card game :)

Now for the latest news. On the bright side, Ian's biopsy showed 99% donor so we are making good progress. The rough news is that the research paper Ian's doctor is basing his current treatment on  used 16 rounds of chemo as the basis of their trial. This means possibly 15 more rounds to go, each about a month long. Almost a year and a half of chemo, with all the quarantine and vulnerability and toxic laundry and daily commutes to San Francisco that go with it. Ian laughed, I cried.

We will meet with Ian's doctor on Tuesday and see what his plan is. Please pray wisdom for his doctor as he makes this decision. A year and a half of chemo feels daunting, but if that's what is required to banish the leukemia it is totally worth it. 

This news has caused us to re-think how to approach this next season. Should we move to San Francisco, walking distance to UCSF? Should we look for a place with two separate living spaces so we can quarantine a sick kiddo inside the house instead of moving them to another home? Maybe take a mini road trip/vacation/camping trip between rounds of chemo? We will have about a week break between each, and it would be nice to have something fun to look forward to if Ian's strength holds. Please pray for us as we strategize how to make this next season sustainable as a family. 

Also, please pray for my energy level as I've been highly fatigued the past few weeks no matter how much sleep I get. I have so much responsibility right now and really need extra energy to keep up with it all. 

Thank you!

Prayer for Ian's Liver

This is just a quick request for prayer for Ian's liver. He is on day three of chemo and they were hesitant to give it today due to elevated liver function tests. His doctor decided to go ahead, but please do pray protection for Ian's liver as he has five more days of treatment scheduled. He really needs this chemo to destroy the disease, but his liver needs to be healthy enough to handle it. Please pray no complications and a smooth road through this. Thanks!

The Plan

Biopsy results came in today. There's about 5% leukemia still in his bone marrow according to the preliminary report. His doctor referred to it as "a touch of leukemia." That is down from over 60% before the last treatment, so I like to see it as good progress. Next round starts tomorrow (Wednesday) at 8am and goes for 7 days, outpatient. 

Here is our plan. For the next two days, the girls and I will drop Ian off for treatment and find some lovely piece of nature to frolic in until time to pick him up. Next, I will drive the girls up to Sacramento on Friday for a five night slumber party until the daily trips for chemo are done. The girls are so excited for another visit. So thankful for our amazing friends up there! 

We hope to ride this one out together as a family as much as possible. We've had a really sweet season of connecting, which I am so thankful for, but it makes it all the harder to face the fact that everything is going to change again. Ian is looking and feeling so strong these past few days. I wish we could press pause and just enjoy feeling normal for a bit. But we can't. So we will move on, one step at a time. 

A couple complications: Fiona now has the mystery cough that Asha had. No other symptoms of sickness at all. It's quite unsettling, though. We are trying to teach her to cough into her sleeve or leave the room to avoid spreading germs, and Ian will wear a mask when we're in the car together. Please pray he doesn't catch this. It's the last thing he needs during chemo. He should probably be keeping much more distance, but it is just so hard to gaze into her sweet little cherub face and not take her hand and cuddle up with her. The other day Fiona said, "I miss Abba already." I asked what she meant, and she said she really missed him when he was in the hospital. Please pray there are no more fevers so he can stay home and we can all be together through this. 

Complication #2: Termites. Ick. Our bedroom has recently exploded with flying, pooping, breeding, disgusting termites. Ian killed 70 of them in our bed last night when we returned after a weekend house-sitting getaway. Someone is coming to check it out Saturday, and Ian has taped up the holes they were coming out of, so there's a temporary fix and deliverance on the horizon. It sure doesn't feel very sanitary for Ian during chemo, however :/ 

So that's where we're at. One day at a time. I will be wearing a lot of hats this next month with Ian doing treatment at home and Asha starting third grade in a couple weeks. Please pray for daily moments of deep Centering for me, so that I can serve my family from the rich resources of Divine love, strength and wisdom and not be overwhelmed or worn thin. 

Both Ian and I have felt the Lord's hand shaping and training us, working deeply in our hearts through this persistent furnace. It hasn't been easy, that's for sure, but we are finding Jesus in our midst. We are praying to not only make it through this unscathed, but also transformed. One day at a time...

More Chemo Ahead

We went to the clinic last Friday with hopes of getting Ian's pic line removed and dreamy visions of traveling around re-connecting with friends and family. Sadly, instead we were informed that he has at least one more round of chemo to start next week so best to leave the pic line in. That was a sad day.

Ian has a bone marrow biopsy around noon tomorrow and the preliminary results from that will determine his regiment of treatment. His doctor is thinking another round of clofarabine and cyterabine similar to last month but a little lighter dose and subcutaneous so that he can be outpatient during the chemo. All is yet to be determined though, depending on biopsy results. 

There are advantages and disadvantages to him being home for treatment. On the positive side, our family can stay together and Ian will have the familiar comforts of home. He lost around 20 pounds in the hospital last month, so it would be helpful for me to be able to cook for him rather than living off the same nauseating hospital menu. On the other hand, it will also mean more super strict quarantine and vulnerability to fungal/viral/bacterial infections from exposure to things at home. Take a look at this article and you will see what I mean. Here's a lovely petri dish grown from the handprint of an eight year old: 

Besides the obvious germs to avoid, everyday things like soil in house plants and vacuuming or baking with yeast can lead to fatal infections when he's neutropenic. It's quite overwhelming and OCD inducing. His nurse/pharmacist (me) would also be a full time mom, which can be a lot of responsibility for one person. So there are blessings and complications either way. 

Please pray divine wisdom for the doctors as they decide these next steps. Please pray they get a good sample in the biopsy tomorrow and Ian is found to be in full remission. Although even with the best results he would still need more chemo, oh what a blessed relief that would be! We really aren't looking forward to more chemo, but we also understand the deadly monster that AML is and the need to be aggressive to save Ian's life. 

In the mean time, we are enjoying our days together filled with family meals and cuddles, watching the girls ride their bikes around and around the parking lot, sipping homemade Thai coconut shakes, and smashing Asha's birthday geodes :)