It's Like the Whole World is Crying With Us

The past few days have been filled with intense grief. Ian's latest biopsy showed what we have both been quietly suspecting - the leukemia continues to rage. Ian never got his energy back after the last treatment and he has been having increased night sweats and other leukemic symptoms. Once the disease becomes resistant to one form of chemo, there is less chance for any other kind of chemo to work.

We were given the choice yesterday whether or not to continue treatment. We've decided to go one more round. Ian checked back into UCSF and began a new regimen of chemo last night. If this puts him into remission, then a transplant is still possible. Otherwise, apart from a miracle, he will be left to survive on blood transfusions until he is no longer able to survive.

Ian wept and prayed over each of our girls yesterday morning as he said goodbye, knowing he will be in the hospital another month and may not have much longer to live. As we stepped outside into the gray, rainy morning with heavy hearts and tears still wet on our cheeks, Asha said sadly, "It's like the whole world is crying with us." Fiona asked if it rains when God cries.  It felt like the whole world was dripping with tears, mourning for us and all that we were going through. Somehow it was comforting. 

Please pray for us. We are still choosing to take it moment by moment, knowing this bad news does not change the fact that we are in God's good hands. We feel deep peace in this storm. We feel parts of our hearts healing in the midst of our breaking. We feel divine grace carrying us, as we have throughout this journey. We know without a doubt that if this fire continues to grow hotter, then we will be given bountiful grace to walk through it.  One day, one moment, one prayer of surrender, one tear, one deep breath at a time.

Video update

Some people were not able to see the video in the blogger format, so here is a youtube link to it right HERE. Just because it really is that medicinally cute  : )

Home Again!

Ian was released from the hospital late Friday night, and we are SO thankful to be all together again!  He is not neutropenic right now, so I can relax a bit on sanitation awareness and we can eat outside food.  Yesterday morning we even took a family trip to farmer's market and had lunch at the local Falafel Stop : )

Fiona keeps commenting on how exciting it is to have Abba home, but she worries when he leaves for a walk or an appointment that he will be gone for a long, long time again.  We talk daily about the transplant coming up so both girls are pretty aware of what's around the corner.  My heart aches knowing this is just temporary, but we are thankful to have at least a couple weeks together before heading into another round.

We are still waiting for news on timing of the transplant.  There are so many unknowns right now, but thankfully we have at least two good matches under investigation. Things could all move very quickly and head into transplant in a couple weeks, or the best donor match may not be available for a few months and Ian may need to go through some more rounds of chemo to stay in remission until transplant time.

One thing we do know is that we are required to find another caregiver for the first 3 months after transplant who is not also responsible for children. It is a seriously vital and vulnerable time of recovery and requires juggling a super complicated schedule of medications and appointments. We were planning to just hunker down as a family for those 3 months, but they equate caregiving on top of parenting to having more than 6 full time jobs. Needless to say, we are changing the plan and actively seeking a caregiver (or series of caregivers - for example, one month each) to live with Ian for those first three months. Last time we had a separate condo that gracious friends gave us to use, but this time we feel it best for Ian to stay in the comfort of our home and for the girls and I to find a separate space. Please pray for us as we seek to fill in all these missing pieces.

As for the lesion in Ian's femur, they are pretty sure it is the remains of a chloroma (leukemic tumor). He is supposed to get a full body PET scan this coming week to check for metabolic activity, and they will decide on whether or not to biopsy it from there. No matter what the PET scan shows, they will give him a blast of radiation just to make sure there is no active leukemia hiding out.

I have been struggling with stress induced headaches this past week, making life with wonderfully loud and bright and energetic children more of a challenge. I'm glad to now have another parent around to absorb some engagement, but I also want to make sure Ian is able to rest and get some soul space while he is home. He is still pretty low energy and quickly exhausted.

I have to end with this video of Fiona from a few days ago, because it is just pure bliss. It makes my heart smile every time as I've watched it over and over and over. You can really see why cats are great therapy : )

New Update

Though there was talk of Ian coming home yesterday, the doctors have decided to keep Ian inpatient until he is out of neutropenia land.  His counts are currently bottomed out, so he's surviving on blood transfusions in the meantime. His mouth, tongue and GI tract are all torn up from the chemo, but he is still able to eat and hold down food.

We don't know what happened to cause that horrible fever, but we suspect it was a blood infection from sloppy handling of his port in the CT scan room of the emergency department. Thank you so much for the flood of prayer that poured in for Ian during that scary ordeal. Ian's room was swarming with concerned doctors and nurses and they were talking seriously about moving him to ICU when I posted on the blog and Facebook about our need for emergency prayer. It was an amazing shift that took place from that point on - the room seemed to calm down and Ian started coming back to himself. Soon after that the doctor told me, "By looking at his face, I can tell he's going to be ok. His vitals aren't showing it yet, but they will follow. Don't worry, he's going to be ok." Soon all his vitals were stable, and he has been stable ever since. 

One new thing they discovered on that fateful scan in the emergency department was lesion on his right femur.

They did a MRI scan of it last night and we are still waiting for more information. We are sure there are more bone biopsies to come - on this femur. Ian has had a strange headache that started several hours after the MRI scan that seems to be related to the gadolinium contrast they used which is suspected to permanently accumulate in the brain. Please pray this lifts soon and this lesion is nothing serious. We really don't want a new cancer to deal with on top of this. 

I'm trying to get back in a rhythm of some sort this week for homeschool, realizing that change will be our only constant for many months ahead.  I'm also trying to be present, trying to take care of myself, trying to take lots of deep breaths and remember grace and the power of Divine strength in my very human weakness. 

Thank you all for your love, thoughts, and prayers ❤️

Please pray

It's been a very, very long couple days that includes a car breaking down, 10 hours overnight in the ER, and most recently me driving Ian to Ucsf with him shaking uncontrollably with a 104.3 fever. He was just admitted now and his oxygen is low and we are all very, very concerned but don't know what's going on. "Severe code sepsis" is what they're calling it right now. Please pray.

Update: Ian has now stabilized and the buzz of worried nurses and doctors has passed. They left our room with smiles and a lot of calm and hope. Ian is feeling a bit better, his vitals are now normal except for the fever, he's off oxygen and is sleeping. 

Thank you for all your prayers! 

Quick Update

Ian was released to come home Tuesday evening to finish the chemo treatment outpatient. We are so thankful for this time together and for him to be able to eat home food and take walks without being chained to an IV pole. He stays in much better shape at home than in the hospital, especially since he has to climb three flights of stairs to go anywhere. We seem to be finding yet another "new normal" by God's grace. 

There's a new wrench in the machinery tonight, however. The girls are spending the night at my mom's place, and she called earlier to let me know Fiona was vomiting repeatedly and screaming for me. My heart sank. The girls will stay an extra night with Nana to see what's going on before they come home. I'm glad my mom decided not to move in with us - it's helpful to have another location for the kids in situations like this.  Hopefully it's just a random food poisoning thing that doesn't continue or spread. 

Tomorrow (Monday) is the last DLI, the final chance for his brother's immune system to recognize and fight the leukemia. I'm bracing myself for the house to smell strongly of canned corn again for a few days. There's little chance of it working, but it sure would be nice if it did : )

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!