“I guess I just don’t know how exactly these things work anymore.”

These were the last words Ambrose’s doctor shared with us as we left his last appointment in Colorado. He was referencing the emphasis we placed on prayer between a missed test and its repeat one week apart, which according to him, was not enough time to show a change in Ambrose’s donor blood composition. The prior test showed Ambrose’s results going the wrong direction, and the rerun came back 100% donor for the first time!

As of this week, Ambrose is also off ALL medicines, has no feeding tube, and his chemotherapy delivery implants have been removed. When you see him you’ll never believe he had cancer. 

Thank you for everyone who prayed, showed us hospitality, and was generous to us over the last year. Ambrose wouldn’t have made it otherwise. We we’re told countless times that he would die, if he survived he would be severely mentally or physically disabled, or that at the very least, he would need another round of heavy chemo and transplant. He is instead being moved to “survivorship care,” which as far as we can tell, is only periodic checkups! And, most of all, he is a flourishing little boy. 

This Christmas and Ro’s 2nd birthday was a day we cautiously hoped for all year. As recently as 3 weeks ago, we expected to spend it in the hospital helping Ro through another round of heavy chemo to clear out his bone marrow again for a second transplant. At that time, we were told there was a 1% chance of being able to monitor his condition out patient and recover his bone marrow donation, and it’s happened!

Experiencing Christmas this way as a family wouldn’t have been possible without the hospitality, generosity, goodwill and intercession received from countless people this year. Dallas friends even had a box of gifts prepared for me to take to Colorado when I went back to gather our belongings, one for Ro to open every day leading up to Christmas.” Celebrate the good,” a phrase I’ve heard for years from a close friend and groomsman in our wedding, has never felt more real.

"He who sustains the world lay in a manger, a wordless Child, yet the Word of God. Him whom the heavens do not contain the of one woman bore. She ruled our King; she carried Him in whom we exist; she fed our Bread.

O manifest weakness and marvelous humility in which all divinity lay hid! By His power He ruled the mother to whom His infancy was subject, and He nourished with truth her whose breasts suckled Him.

May He who did not despise our lowly beginnings perfect His work in us, and may He who wished on account of us to become the Son of Man make us the sons of God."

St. Augustine

The last two months have been filled with uncertainty, but Ro is now doing better than at any point since his diagnosis! 

Colorado is now home for the foreseeable future - we were able to transition Ambrose’s care to Denver thanks to friends who went out of their way to put us in contact with the head bone marrow transplant doctor at Children’s Hospital Colorado. 

We were eager to get a second opinion after Ro’s donor percentage started dropping. The Dallas team denied tests we requested, and the Colorado team suggested these same tests before we could even provide context. Ambrose was admitted to the hospital for 2 weeks and his condition has stabilized. 

Thankfully a cancer relapse has been ruled out at this point, which beats the odds - only 10% of patients are this fortunate. Ro may still require a second bone marrow transplant, but we are hoping and praying that this is not the case. His head doctor is a brilliant and humble man who shares Jesus’ name (Arabic - Eissa). 

Please pray for Ro’s bone marrow graft to flourish and sustain him. Thanks to everyone who has continued to pray and check in, and all of those made our time in Dallas meaningful. 

Merry Christmas from Ro! He is two years old today! 

Ambrose decided he didn’t agree entirely with the schedule set by his doctors - he extubated himself on Tuesday and is breathing room air!

For the last week we have heard:

1. Severe ARDS does not spontaneously resolve. Ambrose’s case did. 

2. Cancer/transplant patients do not have the strength to remove their breathing tubes, and if one is lost by accident, they don’t sail out of it like he did. 

When it happened, a respiratory therapist we’ve become friends with dropped in (coincidentally..?) to tell us that stigmata relics of St Padre Pio would be in Dallas this week. She managed the situation perfectly even though he wasn’t her patient. 

We’ve been reflecting on healing and on the unexplainable parts of Ro’s bought with cancer. From our perspective and the perspective of those who practice medicine every day, there are parts of his recovery that lack a medical explanation. Caitlyn and I are attributing this to everyone who is praying for him and how healing operates through control of matter by mind on two sets of principles that are more similar than they are different. 

We’re all more familiar with medical healing that operates through observable phenomena in the physical world, applied by people of goodwill. We’re thankful for the high quality care Ro has received in this form. 

Below is a thought I mangled from The Summa:

Time, space and matter are a continuum. Distinct at the extremes but inseparable. Matter comes into existence at a point in time and in space. Space is the distance between bodies of matter. Time measures the movement of matter through space. Its no accident that it’s triune.

The other form of healing operates in a mysterious way through signs that symbolize what is done in a transcendent sense, kind of like reading: hallucinations produced through the consumption of inherently insignificant squiggles on flat media. 

-John 1:1-5 Time, space and matter are brought into existence by a Mind 

-Petition/effort: Friends lowering their crippled friend through a roof to the Lord’s feet

-Instruments: laying on of hands, washing in the pool of Siloam, etc

Thank you for praying. We have time with Ro we wouldn’t have otherwise.

Ambrose’s condition has worsened in the PICU. He now has severe Acute Respiratory Distress Syndrome. His right lung was completely collapsed yesterday, and he is now on a nitric oxide treatment through his ventilator. We are praying for him to turn a corner because the next escalation is an artificial lung (ECMO). He is also being treated for pneumonia.

Do not look forward in fear to the changes in life; rather, look to them with full hope that as they arise, God, whose very own you are, will lead you safely through all things. When you cannot stand it, God will carry you in His arms.

Do not fear what may happen tomorrow; the same understanding Father who cares for you today will take care of you then and everyday.

He will either shield you from suffering or will give you unfailing strength to bear it. Be at peace and put aside all anxious imaginations.

 – St Francis De Sales

Ambrose is out of the ICU! 

Ambrose is demonstrating incredible resiliency. He is now contending with Graft Verses Host Disease, a post-transplant complication that impacts about 50% of patients. GVHD is caused by the donor's immune system attacking the host's tissues. For Ro, this is manifesting itself as a rash, frequent vomiting and internal GI bleeding. But there is a silver lining - GVHD also targets any lingering malignant cells that could be in his body.

Ambrose is also starting to recover his strength. He was able to walk for the first time in almost 3 months last week! He is also still himself despite all he's been through. Now that we are out of the ICU, Lilian is able to visit. Quotes from the The Lord and John Wayne come to mind - I don't know what that says about my theology, but I wanted to share:

“I tell you the truth, unless you become like little children, you will never enter the Kingdom of Heaven." 

-Jesus of Nazareth

"It’s too bad kids have to grow up into people."

-John Wayne

We are optimistic about care improving on the BMT floor. We were able to get the palliative care doctor to schedule a care conference last week. It was attended by BMT nurses and doctors, as well as all of Ambrose’s therapists. Fortunately, the Chief Medical Officer for the hospital is a friend of one of our Dallas friends. She also attended. Caitlyn and I explained recurring misses that are continuing to happen, and we have already seen improvement. There was also a timely mistake – the BMT team missed a decimal point on Ambrose’s morphine dose and snowed him in right before this conference. We have been impressed with this hospital as a whole, and the ICU team in particular. I expect us to now have an easier time with the BMT team. That said, if you know someone with GVHD knowledge or experience, please put us in touch with them. We want to make sure nothing is missed. 

Of all the possible complications that follow a bone marrow transplant, Ambrose is experiencing the most severe. He had to be intubated again today after a rough 48 hours of fighting his breathing tube, later CPAP, and extreme opioid withdrawals after weeks of pain management and sedation. 

His adenovirus infection has also spread from his blood to his lungs and GI tract. This is heartbreaking for us, because it had appeared to have resolved on its own, and there are very few treatment options. He qualified for an experimental treatment as part of a T-cell therapy clinical trial, but he is not able to participate while intubated. Proliferation of this disease can cause long term organ damage and death. 

Please pray for Ambrose to get the rest he needs over the next couple of days to begin breathing on his own, and for protection of his internal organs. 

Please also pray for him to remain peaceful. Everything happening to him is beyond his comprehension as a 19 month old. 

This excerpt from Liturgy of the Hours (Canticle Daniel 3) was shared with me by Lilian's Godfather. It frames how we feel in this season. Also, as an aside, it evokes a story cherished by Jews, Muslims and ancient Christians - Why Did God Choose Abraham?

Ambrose’s condition has deteriorated. This evening he had a drain placed in his abdomen, feeding tube, breathing tube and arterial line also placed. He will likely remain intubated for the next few days.

His transplant is showing signs of successful engraftment, but his VOD is not improving. The medicine takes 5-7 days to work and we are hoping for the best. 

There is only one approved medicine for his adenovirus infection, and it has not worked over the last week. We are opting into a clinical trial using T cell therapy to address it. There is a 50/50 chance we’ll receive the therapy (or a placebo).

Lilian is doing very well. We still get to see her every couple of days.

Please pray for: 

-Receipt of therapy instead of placebo

-Protection of internal organs 

-Return to self-sufficient basic function

-Virus and VOD response to medicine 

-Healing by supernatural means 

Ro has been diagnosed with veno-occlusive disease and we’re watching for signs of engraftment syndrome.

Because of the VOD, his liver is 3X normal size and is negatively impacting his ability to breathe and urinate. There is also internal “leakage” - fluid build up - around his organs. 

He was moved to the PICU this evening and hooked up to heated high flow (continuous oxygen to keep his saturation levels where they need to be). He’ll be under constant surveillance. Please pray that this helps reduce stress on his lungs and allows our boy to get the oxygen he needs. 

He was also started on the primary medicine used to treat VOD. This medicine is intense but effective. Join us in praying against the potential side effects that come with the blood thinning properties of this medicine.

A foley bulb has also been placed to help clear fluid (because of the force of his liver pushing on his bladder - which can inhibit bladder function). 

More interventions might be needed but for now - he’s stable. 

Thank you for praying for him. 

Thank you for continuing to pray for Ro - it’s a surprise that he is doing as well as he is. We have a significant challenge to share:

There was a series of oversights and mistakes made by the medical team that resulted in Ambrose needing a new central line. The surgery is invasive, and his original line was supposed to last through for the duration of his hospitalization. A surgery of this type when he was in his most fragile state was risky and it shouldn't have been necessary. We are working with a palliative care doctor who is starting to set things back in order. What happened has been officially categorized as an "Adverse Event," bureaucratic nomenclature for causing unnecessary harm to a patient.

We are thankful to have received care at Dell Children's Hospital in Austin for a few months. Without this experience, we would not have known what Ambrose needs and how it is supposed to be delivered. Please pray for CMCD to live up to its reputation, credentials and values. There is a lack of discernment and avoidance of responsibility that is requiring Caitlyn and I to exceed the limits of our limited medical knowledge.

Leading reconciliation is our only option at this point, and it is also our preference. Please pray for the requisite humility to be in place for this to be a possibility. Ambrose is not in a position to be transferred anywhere else, and we do not have a sense of peace about pursuing that as an option at this point.

St Paul's teaching in 2 Corinthians 5 about The Lord leaving behind a "Ministry of Reconciliation" is at the top of our minds right now, as is a quote from St Mother Theresa, "There is no peace because we forget that we belong to one another."

We are also realizing that our stay in Dallas will likely be longer than we anticipated. We’ll look forward to returning to Austin, but we have been welcomed with open arms by friends up here. They have called, shown up to hold Lilian or surprise us with a meal, and given us a place in their homes. We’re going to make the most of our time here. 

We should know if his transplant is successful soon - this is the most significant hurdle to clear.

Transplant complete! Its surreal to have reached this major milestone in Ro's cancer treatment. We are now waiting for "count recovery." His blood cell counts will drop to near zero as a result of the preparatory chemotherapy regimen that preceded his transplant. Rebounding bloodcounts will show that the donor's marrow successfully grafted into Ro's bones. 

Please pray for this incredible process to happen according to plan, and also for the sustainment of Ro's health. He is in an intentionally immunocompromised state to prevent his body from rejecting the donor's cells. 

Psalm 105

Give praise to the Lord, proclaim his name;

make known among the nations what he has done.

Sing to him, sing praise to him;

tell of all his wonderful acts.

Glory in his holy name;

let the hearts of those who seek the Lord rejoice.

Look to the Lord and his strength;

seek his face always.

Remember the wonders he has done,

his miracles, and the judgments he pronounced,

you his servants, the descendants of Abraham,

his chosen ones, the children of Jacob.

He is the Lord our God;

his judgments are in all the earth.

He remembers his covenant forever,

the promise he made, for a thousand generations

Ambrose continues to amaze - he’s still physically strong, and he’s remaining joyful after a week in the hospital and the most intense chemotherapy yet.

Caitlyn has made the hospital room feel like a home to him, even rearranging the layout to accommodate a dedicated play space while maintaining the transplant wing’s high cleanliness requirements.

Prayer requests:

Ro started a chemotherapy today used in place of radiation because he is so small. It is excreted from his skin and can cause burns. Please pray that he is spared from this side effect. Also, because of its toxicity, Caitlyn and Lilian can’t be around him.

The transplant is scheduled for Tuesday. Ro has a perfect match, and he happens to be a man from Argentina! Please pray that the complex chain of events required to deliver this cure line up according to plan.

We arrived in Dallas this week, and Ambrose's transplant is scheduled for late June. 

Proceeding to transplant after only two rounds of chemotherapy was a long shot, and we're thankful for this answered prayer. 

Ro will undergo a series of pre-transplant exams and the most intense round of chemotherapy yet. His care will take place in Dallas for the next 4-6 months. 

Prayer Requests: 

• Protection against infection; Ro needs to be as healthy as possible for his transplant to take place
• Peace for our family as we relocate to Dallas
• For the medical team, that their decisions and actions would be directed by Wisdom 

We are filled with gratitude for the constant prayers, love and support for Ro and for our entire family. We have appreciated every card, gift, toy, meal and more - everyone has been extraordinarily generous and we feel so loved. 

For the next six months, we will not be able to receive packages at home or at the hospital. Call or text anytime, Ro loves seeing family and friends! 

We’re settling into hospital life, and Ambrose continues to tough out heavy chemotherapy while putting smiles on his family’s and nurses‘ faces.

We learned this week that a transplant will be necessary. Please pray that Lilian’s cord blood is a match, because it would expedite his treatment schedule by months and reduce the number of required rounds of chemo.

We’ll need to go to either Dallas or Houston for the transplant - we’re thankful to have a world class children’s hospital where we live, and excellent subspecialty hospitals a short drive away where we have supportive family and friends.

There is a lot of beauty in this season despite the challenges. One of our nurses said she didn’t want to have kids, but is reconsidering after time with Ambrose. Lilian is tranquil and rarely cries, even during diaper changes. And Aunt Sarah has taken care of us at the hospital and Abe at home over the last two weeks.

Ambrose spent yesterday in the ICU undergoing testing and getting his blood composition rebalanced before cancer treatment begins. The discerning medical staff ran additional tests to provide the most precise diagnosis and treatment plan possible.

• Ambrose has Mixed Phenotype Acute Leukemia (MPAL), a rare type where both acute lymphoblastic leukemia (ALL) and acute myeloblastic leukemia (AML) cancer cells occur at the same time
  • He will undergo surgery for a portacath, bone marrow sample and spinal tap tomorrow morning, and we will begin cancer treatment tomorrow if the procedures go well
  • Please pray for Ambrose, as he has never been put under anesthesia, and for the medical team as they direct their cultivated skills and good will toward our son

Now for some good news! Thank you all for your outpouring of support. We have been cared for relationally, financially and spiritually by literally hundreds of friends and family members. Caitlyn and I are grateful beyond expression for you. It mirrors a blessing over Ambrose and the medical staff offered by our Pastor, Fr. Daniel Liu, yesterday (referencing 2 Cor 1):

• “Blessed be the God and Father or our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ's sufferings, so through Christ we share abundantly in comfort too.”
• I also want to specifically thank @christiannetaylor and @sarabethcoatney for helping us comfort Ambrose through his time in the ICU
• Lastly, please continue to pray and ask for prayer. We heard yesterday that one of Fr. Kapaun’s official miracles is a brother in law of a friend of ours from our time in Philadelphia, and he is now praying for Ambrose too! We feel peace and confidence that transcends the current circumstances because of the intercession and love of so many wonderful friends and family.