Scary News, Please Pray

Please surround us with prayer. The doctors are worried. They are concerned it may be leukemia presenting in the lymph node of his tonsil and are pursuing a fine needle biopsy of it if possible. They have found no trace of any virus in his system and the big gun antibiotics haven't helped, it is only getting worse and fevers continue. They think it may be the leukemia progressing. He is getting another bone marrow biopsy right now as I type this. They will assess where he is at and decide from there what to do. 

There are very few people with high risk AML who survive as long as Ian has. It is a sort of "uncharted waters" as far as the research goes, so they say we are relying on the experience and creativity of the doctors. Fortunately, his main doctor is one of the best. Unfortunately, he is on vacation for the next few weeks. Please, please pray for wisdom for the Nurse Practioner who knows his case best (besides his main doc who is gone) and the other doctors who are on his team. 

Ian is hanging in there. He has post nasal drip that combines with his massively swollen throat to create a lot of gagging, nausea and vomiting. He hasn't eaten or kept much food down. He still can shoot me a twinkly smile to melt my heart, though. 

Honestly, I am heartbroken and scared. I've cried and cried the past two days. I want to be strong for Ian and the girls but I feel like a sad mess. All my strength and hope feels far away. I need a bucket full of grace to pour down on me. We need your prayers more than ever right now...

Infection continues

Quick update. All treatment is on hold because of this infection in his throat and it has been getting progressively worse every day. They wanted to give him antibodies to help him fight it, but his fever was so high (103) that they were concerned they wouldn't be able to tell if he's having an adverse reaction to it or not. They just decided to give it to him anyways. Please pray Ian takes a quick turn for healing and never ever turns back... 

Throat Infection

Ian had a sore throat yesterday that grew into an infection progressively worse overnight in spite of big gun antibiotics. They are concerned about a possible abscess in his throat that needs to be drained. He is in for a lot of pokes and prods and scans today as they try to assess what's going on. Without an immune system to keep them in check, infections can move crazy fast. With a grand total of about 3 hours sleep that didn't begin until 6am, he is exhausted and to be honest quite miserable. All chemo and treatment is called off for now until this infection clears up. Thank you for continued prayers...

Back in the Hospital

Today was the first day of Ian's second round of chemo. A couple hours after returning home, he started running a fever and having chest/breathing pain - all symptoms requiring immediate ER. Nana came to the rescue for a second round of watching the kids today while I took Ian back to UCSF. The other symptoms are gone now but fever continues, as well as low blood pressure, so he will be in the hospital for at least another 48 hours. Please pray this is nothing serious, for wisdom for the doctors here, for protection as he's in the germy ER for a good while until a bed opens up in the main hospital, and also strength for my mom who is 73 and doing double duty. 

The Road Ahead

Things have been calm and even quite joyful around here lately. Divine Grace is clearly carrying us. We are still living by the principle of "do not worry about tomorrow" and I never want to turn back.  Though there are moments when the statistics start to scream in my ears and silence the hope of a miracle, in general we are keeping on the path of peace and surrender - taking it day by day, moment by moment.

Here is a quick summary of what the road looks like ahead, from where we stand now.  Next week Ian begins round two of chemo, and the following tuesday he receives the first DLI (Donor Lymphocyte Infusion).  We will then repeat this process of two more sessions of chemo 4 weeks apart and then a second DLI.  The purpose of all this is for the chemo to "tag" Ian's old diseased immune system (pre-transplant) and for his new immune system (supercharged with T cells from his brother's lymphocytes) to locate and attack it.  We are hoping for GVL - Graft Vs. Leukemia. We must also be prepared for some GVHD - Graft Vs. Host Disease, where his brother's immune system turns against Ian's own body and attacks it. We are hoping for not too much of this. There is a 25% chance of this treatment being successful. There is also a 20% chance it will cause his death within a year. Not a fun game of dice.

The chemo is pretty mild as far as side effects go. He hasn't lost any hair and his appetite is normal though food tastes a little off. Brain fog, low energy and mild nausea are the only symptoms he has experienced so far.  It may be a couple months before we know if the treatment is working, however.  This means an extended season of weekly platelet transfusions and careful quarantine due to neutropenia - very, very low immune system and high vulnerability to infections. It is a long and precarious stretch of road ahead, but we've hiked these trails before and I know without a doubt we will be given grace for each day and for each step of the way. We are learning ever deeper the art of trust and living in the moment, and these are beautiful lessons though at great cost.

Please pray this treatment will be successful. I am asking that God would supercharge every cell that is working toward Ian's life, and that any cell that isn't would be destroyed. Please pray protection over his vital organs especially during the DLI and that he wouldn't get any more fevers or infections.  If this treatment doesn't work, our remaining option is a second bone marrow transplant. We are really, really, really hoping that isn't necessary.

So that's the plan.

Thank you all for your love and prayers!

P.S. Ian is trying to walk daily and is highly motivated relationally. If you want to really help out and connect with him, taking walks is a great way to do so. Restrictions for quarantine are that you need to have been healthy for the past two weeks without known exposure to anyone who is sick the past two weeks. 

Home!

Ian is home!

The girls and I picked him up early this afternoon and celebrated by playing in the rain and splashing in puddles...

So thankful to be all together as a family again!!!!

Perhaps they don't feel beautiful

 "Perhaps they don’t feel beautiful, ...  But I don’t know that I’ve ever heard anything as radiant as those two"

> Do you know how beautiful you are?

Hospital Update

Ian is in the hospital with a mystery fever/infection. His fever rose yesterday morning and we were in the ER until 10pm last night when a bed opened up at the main hospital. We are waiting for lab results and blood cultures to reveal what's going on. Possibly just Fiona's virus, maybe an additional sinus infection, maybe something else entirely. Without an immune system to fight bacteria and fungus, they take a fever very seriously around here. 

Whatever the case, Ian isn't doing so good. He hasn't rested well and has lost all his spark and spunk. His eyes are glassy and distant. He's not even reading texts sent to him. It breaks my heart. 

The hospital bed is torture for his body, inflating/deflating the moment he settles into a comfortable position. He's being pumped with "big gun" antibiotics which may or may not be effecting him. One thing is for sure - something about this place seems to numb the soul. It's hard to have hope, to remember life outside the hospital, when you are chained to IV drips and dependent on shifting nurses for basic necessities. I'm trying to hold onto hope for him, but this place has its effect on me also. 

We should have news today or tomorrow from the labs. 

Please pray it's nothing serious and he can come home soon!

So far, so good

All is going smoothly around here. 

Fiona is still in recovery with my mom, but I'm quite hopeful at this point that her bug hasn't spread. So thankful!

Ian is feeling more cumulative effects of the treatment, but nothing too extreme. The lowest dip should be tomorrow. So far just mild nausea, dizziness and chemo brain. His liver is tolerating it well. 

At this point we have to be super careful about bacteria and fungus. This means fresh, clean, well cooked food is a big deal. No eating out, no leftovers.  A friend created a meal planner registry if anyone wants to pitch in cooking for us. Here's the link: 

http://www.takethemameal.com/meals.php?t=IEKC2418&v=58e537189c#

We're so thankful for all the amazing support we've received. I firmly believe we are going to get through this fire unscathed, by God's grace, once again. Ian's nurse practioner even had a dream this week that he was healed, his platelets back to normal counts! 

Amen, let it be... 

Sick Little Fiona

Ian completed his first round of chemo yesterday and is doing pretty well. Not too much nausea, he's eating well and walking daily to keep up his strength. 

We were riding a red carpet of smooth sailing until yesterday. 

Fiona awoke with a horrible cough and wheezing/difficulty breathing, and she's definitely full power sick at this point with a fever and sore throat in addition to the cough. It's been a complicated dance to figure out how to care for a clingy toddler coughing in my face as well as a neutropenic husband with barely any immune system fighting leukemia. Lord help us! I'm clinging to trust in the midst of it. A friend texted this verse to me just moments after Fiona woke up sick yesterday:

 “Fear not, for I have redeemed you; 

I have called you by name, you are mine.   

When you pass through the waters, I will be with you; 

and through the rivers, they shall not overwhelm you; 

when you walk through fire you shall not be burned, 

and the flame shall not consume you.  

For I am the Lord your God, the Holy One of Israel, your Savior." 

Isaiah 43:1-3

That has been a key verse of hope for us. 

My mom took Fiona this morning for the next couple days (HUGE relief!!!) and I spent most of the day today with Asha at the beach getting fresh air and sunshine therapy. 

I was exposed to Fiona's germs in a rainbow of ways and was up most of last night with her, so it will be a miracle if I don't catch her bug. 

Please pray little Fiona heals super quickly and nobody else catches it... 

Especially Ian!

Thanks ❤️