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 :)

Birthday Miracle!

The doctor said it was highly unlikely that Ian would get out for Asha's birthday. Well, the Great Physician  stepped in and tripled Ian's blood counts overnight so that he was released to go home the afternoon before her birthday!!!  That means he was home to witness Asha's crack of dawn house-full-of-birthday-balloons squeals of surprise and  her requested strawberries and whipped cream French toast breakfast feast. 

What a birthday gift from heaven. 

Thank you Jesus!

 ❤️❤️❤️

Good news!!

I'm so very, very, VERY excited to announce Ian's counts are going up a little bit every day now! His fevers have stopped and his energy is slowly increasing. Each day is closer to him coming home, and boy are we looking forward to all being together again. I'm sure the doctors have plans for more chemo and biopsies and lymphocyte infusions in the very near future, but hopefully they will all be outpatient from here on out so we can be together through it all. 

Fiona came to visit Ian yesterday, seeing him for the first time in well over a month, and it was a perfect reunion. She had been begging day and night for a date with me to visit him in the "hopsible" and was missing him terribly. When we came into his room and washed our hands, at first she didn't know if she could touch him so she walked right up to him and just stood there hesitantly. Ian swooped her up into his arms and started weeping, and she held his hand and gazed lovingly into his eyes and wiped his tears. Oh it was the best, the sweetest, the tenderest moment I've ever witnessed. We only stayed for about an hour, but that hour was full of love so thick you could cut it with a knife. 

Asha has felt fine, but she has a lingering mystery cough so she will have to wait until Ian comes home to see him. Her birthday is this Sunday, and there is a sliver of a chance he may be able to come home that day. We don't expect it, but that sure would be sweet ❤️

Thank you all for your support of love and prayers and cards and meals. 

We are so blessed! 

Day 20

Well, it's been 20 days since Ian started chemo and no rising counts yet. They bumped up a few days ago to our great delight, only to drop back down the next two days. So we continue to wait and pray.

Ian's beard started falling out just today, so we will see if the trend continues. He still has daily fevers and night sweats which we are hoping are just due to his low immune system and persistent tonsillitis. If so, these should resolve once he starts making blood again. They are injecting him every evening with neupogen, a growth factor that tells his bone marrow stem cells to divide and create more blood. Until he can make his own, he's surviving on a steady supply of blood and platelet transfusions. We highly encourage those who can to donate blood to replenish the supply.

As for the girls and I, it's been an evolving dance of strategies this past week.  Fiona had been thriving, but Asha had grown a bit disconnected and was really missing me. She cried and cried when I visited, begging me not to leave, which broke my heart. She didn't want to go home with me and leave her friend Saraya in Sacramento though, either. So we are experimenting with a compromise - Saraya came home with us yesterday and has been an amazing Mama's/Nana's helper! This way Asha has a friend (who is a super sweetheart 11 year old) and she has the comfort of home/family. 

My mom is helping with the girls on days I visit Ian, but currently I'm feeling like the girls are needing me most. If anyone wants to sign up for meals, now would be a great time as I'd like to focus on reconnecting with the girls as much as possible while I'm home.  Here's the link.

Prayer points:

* Please pray for Ian's counts to come up super fast. It's been a little discouraging the past few days. He's been in the hospital for almost 4 weeks now and he's ready to escape the IV pole and midnight medications and be done with the same unappetizing menu for every meal. The hope of him coming home for Asha's birthday seems pretty dim at this point. 

* Please pray for the girls, Asha especially. She still seems a little disconnected and I can tell there's a lot going on inside her that she isn't communicating. She's been through a lot in her little lifetime.  Fiona is as cute and bright and mischievous as ever, but she talks about death a lot and really misses Ian. 

* Please pray wisdom and strength for me as I seek to discern the delicate balance of caring for myself and supporting Ian and each of the girls each day. My heart aches with the prayer that we will come through this stronger and sweeter, closer to the Lord and to each other.

Thank you!

DLI Today!

Ian's main doctor is now back from vacation and we were informed yesterday afternoon that the DLI (infusion of his brother's T cells) will be happening today. May this super power Ian's brother's immune system to banish every last vestige of leukemia! Never, ever to return!!! That's my battle cry prayer.

Any GVHD will probably take a couple weeks to show up. We feel so grateful to have escaped unscathed last time, with only a bit of GVHD on the follicle of his big toe. Unfortunately, it seems that was not enough. Please pray for the Great Physician to guide this delicate balance of attacking the leukemia and not his body. Some forms of GVHD can be short term and handled with steroids and immunosuppressants, but some can be fatal. Some are more long term and can effect quality of life for the rest of his life. There's a lot at stake, but we are continuing to take this one day at a time.

Ian is pretty weak, as would be expected at this stage of the game.  He is losing muscle mass daily and living off of platelet and red blood transfusions. He struggles to muster enough energy to just take a shower, often he can't even do that. He sleeps a lot and is still having fevers off and on daily, keeping a steady supply of blood cultures brewing just in case there's an infection to blame. They say he has about two more weeks of this before his blood counts might return. If he starts producing blood again, that is good news. It points toward remission. Asha's birthday is on July 26th, so we are hoping and praying Ian will be home to celebrate all together.

A friend was praying and saw a picture of Ian being held by Jesus. Ian's arms were at his sides, he didn't even have strength to reach out, but Jesus just picked him up and held him. That is exactly where Ian is at right now. He doesn't have much energy to reach out, but he knows deeply that God has got him.

As for me, I'm still under the pouring bucket of God's grace. The girls remain happy clams with our friends in Sacramento. Again, I can't express how grateful we are! It's such a blessing to be by Ian's side night and day while knowing the girls are happy and cared for.  I'll leave you with some pictures that brought us joy from this last week: the girls shucking and eating fresh corn, Fiona gathering mint for "Papa Jacob's" morning tea, and some of Chrys's beautiful henna:

Chemo Completed

Just wanted to check in for a quick update. Ian finished his last dose of chemo last night and the cumulative effects are definitely kicking in. He has slept most of the past two days, feeling very weak and low energy.  His liver counts go up and down. I'm thankful they are going down as well as up, and the doctors don't seem too concerned. The DLI is scheduled to happen in 5 days. That is the wild card right now, as they are planning to give him his brother's T cells until he experiences GVHD (graft vs. host disease - which is the only way to know they may have achieved GVL - graft vs. leukemia). The girls are still playing happily in Sacramento, though starting to miss us. God bless our amazing friends who are taking such good care of them.  Any pictures of Ian right now would be too depressing, so I'll leave you with one of Asha yesterday. That smile is priceless!!!