Real Time: Hello Baltimore, MD

"This sickness will not end in death but is for the glory of God, so that the son of God may be glorified through it." John 11:4

So much has transpired since my latest post. We were notified that my first appontment for evaluation at Johns Hopkins would be on June 4th, which meant we had about a week and a half to pack our home, find a storage unit, move everything, find a temporary living situation in Baltimore and notify caregivers. Simply said, all the glory be to God. He has been in every single detail, providing everything even when we didn't know we needed it. I say "we" because this isn't just about me or my journey, every person in my life is impacted by this diagnosis and I hold their thoughts and feelings so close to my heart.

The Move

It's funny how the Lord gives us just what we need. Before moving to North Carolina a year ago, we went camping for 4 days. During that time, my husband and I were so sure of where the Lord was calling us. We had announced to family that we were moving, but of course, we had lingering doubt caused by some unsupportive family members - we get it, not everyone will understand. We didn't either. All that we knew, was that He was calling us and it was our obligation to listen. Well, the week before we moved, we decided to go to Mikael's mom's property in Randle, WA to camp for about 4 days. When telling others we were going camping just days before we were to pack our entire lives into a truck and move across the country, naturally they thought we had completely lost it. There was SO much we needed to get done before the truck came to pick everything up, flights, securing a temporary stay at an airbnb, we hadn't even started packing yet. When we received the invitation to go camping, I thought of Jesus. Whenever things got hard, when he needed to feel close to his father in heaven, when he needed reassurance, he stepped away and went out into the wilderness. I thought, if Jesus did it and came back clear minded time and time again, that is what we need to do. Did it make sense all of the time for Jesus? I doubt it, he probably had disciples waiting on him to return so they could continue to learn from him - but, he put everything aside and did it. "If he can do it, I can too" I thought. We unplugged and had so much fun, we spent time reflecting, meditating on His word, sharing in special moments with the people we love and we came back to reality rested and ready to take on our great task. As I am typing this out, I realize that this was yet another foreshadowing for today. The Lord was setting motions in place for what was to come.

Back in February, before this diagnosis, we scheduled a camping trip for memorial day weekend. We had completely forgotten about it because of everything going on until just a couple of days before the trip. We were preparing to move and decided to go anyway. For two days we unplugged, meditated on His word and spent such special time together in the wilderness just the four of us - just as our Lord and savior did. When we returned, we were ready to take on the many tasks associated with the temporary relocation. We had to find a place to store all of our things, we had to request to get out of our lease early without paying over 10K in penalties, we had to find a place for our cat to go, we had to move everything into storage, we had to completely uproot all of the roots we had planted over the previous year. The beautiful life that the Lord had given us due to our obedience. But you know what? I didn't feel sad. I didn't feel scared. Because I knew that everything would be waiting for us when we got back, our church, our community of friends, our family, activities, groups, etc. The life we built will still be there, and we will be so much more fulfilled spiritually when we go back. I realized in all of this that our circustances could be so much worse. I could be across the country, unable to do outpatient treatment, my husband could still be working 12 hour night shifts or at another corporate job where getting time off or relocating temporarily would be impossible, we could not have the means to relocate, we could not have been able to get on a nationwide insurance plan to be able to go to Johns Hopkins. The Lord has provided in every single detail because of our sheer obedience to Him. My husand has the ability to work from anywhere, my family organized a fundraiser walk back home in Washington that raised substantial funds to help cover living expenses, caregiver flights, food, copays, out of pocket maximums, etc., my close friend was able to take our cat, and 8 men from our church moved our entire home into a storage unit in 4 hours. I find myself thanking Him several times per day because I see His provision at just about every turn.

The Stay

When searching for our temporary living situation, we prayed for something that would be clean, safe, big enough for myself and my husband, our two kids, a caregiver, a separate office for my husband's work and a yard space. The yard space was probably the most important to me. I have two very active boys who are constantly outside and on the move, keeping them inside for 100+ days would have taken a major toll on them and really everyone else in the home. I prayed, friends prayed and due to the short notice the only place we could find was a 3 bedroom in the city with a deck space and driveway. I thought, that will have to do, the boys can play in the driveway or on the deck and we will make it work. Just before booking, I took one last look at the airbnb listings, although I had seen every one of them 300 times. To my surprise, a new listing had just posted. A 4 bedroom townhome, just outside of the city, with a fenced backyard that was completely remodeled and never before rented. I immediately messaged them and was able to talk them down over $3,000... Without fail, the Lord provided yet again. As a child, we didn't stay in one place very long but there was one home we lived in for the longest (about 4 years) and when we arrived here, the home instantly reminded me of that home. Not only that, it reminded me of the home Mikael and I began our relationship in and grew our family in in West Seattle. It is a an eerie mix of the two, down to the scents and creaky floorboards. With joy in my heart, I thanked the Lord for bringing us comfort and familiarity in a time and place that can feel so distant from those attributes.

The Treatment

I have had one appointment so far, apart from weekly labs. It was an EKG, an ultrasound of my heart. It was painless, except my arm fell asleep about a third of the way through so I had to hold completely still for the next 40 minutes with a dead arm. That was fun. We got through it! My heavy appointment week begins the week of the 9th, so just a couple more days of rest. I will have an appointment with my doctor, a bone marrow biopsy, chest CT, labs, my first blood transfusion, Pulmunary function test, and a couple of consults. Bone marrow biopsies have been very difficult for me in the past, so if you feel led to pray, I will take all the prayer I can get! Over the next few weeks I will continue to have testing done to ensure I am healthy enough to undergo transplant. My conditioning period begins July 9th which will include 3 days of rabbit ATG followed by 5 days chemotherapy and 1 day of radiation.

That's all for now.

Written 06/06/2025.

Sincerely,

A Friend.