Chris's Lymphoma Journey

A lot has happened over the past month, and so I thought it would be helpful to put together some Frequently Asked Questions. Answers? The only answer I have is Jesus.

This is a long post, so if you only have a minute, I invite you to just read how God has taken care of us:

How God has taken care of us

• CNS Lymphoma is a serious condition that I didn’t know I had until September 27. My symptoms started in early May with back pain and numbness. Yet, God protected me in that the lymphoma found months later hasn’t spread much and wasn’t big enough to even show up on the MRIs I got.
• In Thailand, when I found out that my lymphoma had returned, God enabled me to call internationally and connect directly with the doctors and nurses on their personal numbers to be able to explain quickly what has been happening – this is not how medical appointments typically work. 🙂
• Upon diagnosis my doctor said I should return to the USA for treatment ASAP, so I flew into O’Hare and drove straight to the ER in Grand Rapids, MI. My doctor met me there at the ER! This kicked off 8 days of testing and treatment, led by a fantastic medical team
• The team of doctors in Grand Rapids are consulting with other lymphoma specialists at Northwestern University – it’s a blessing to us that they are collaborating well on my case! I really feel well cared for.
• Many wonderful friends came to Becca’s aid as she spent 2 weeks wrapping up life in Thailand with the kids. Many people came to support her and the kids in the last days.
• A lovely couple who owns both a condo and a lake house, people we’ve never met or known, felt led to move out of their condo and into their lake house so that we could stay in their place, which is ideally set up for us! God has just blown us away with his provision.
• NorthPointe Christian School, where our kids attended in the fall of 2023, was able to get all three of our kids into their respective classes with only a few weeks – we feel so warmly welcomed back! In addition, out of all the places we might have landed, the condo is only 2 miles from NorthPointe. God is amazing!
• People we know and people we don’t know have prayed for us far and wide. Many people have also given generous gifts to help with our medical and transition expenses or bring us a meal. This has just been such an amazing and humbling experience to receive God’s provision.

Frequent Asked Questions

What is your current chemo treatment plan?

My current chemotherapy regimen is considered a short-term plan to get me to the next phase of treatment.

I have a recurrence of lymphoma only in my central nervous system (CNS) and I am in the middle of an 8-round in-patient chemotherapy treatment. Each round is spaced 14 days apart and takes place in the hospital. On day 1, I check into the hospital and am expected to stay about 4 days. This last time I got out in only 3 days which was a huge blessing! The rest of the 14-day cycle I can be at home. Day 1: I receive an IV of high-dose methotrexate chemotherapy, toxic to the body and especially the kidneys. Special attention is given to helping my body recover. I continually take medication to raise the pH of my blood to give my kidneys a fighting chance to clear the toxic chemo. Day 2: I receive a “rescue drug” called leucovorin which breaks down the methotrexate faster after 24 hours. Day 3: I get an IV of Rituxan, an immunotherapy drug which targets B-cell lymphoma. I stay in the hospital until my methotrexate levels as measured by daily blood tests are undetectable. The nurse staff look for signs of sickness, changing symptoms or kidney distress. The first two rounds have gone really well. While at home during days 7 through 11 I take an oral chemotherapy pill called Temodar. This chemo pill will be taken every other cycle (2, 4, 6, 8). I just finished this part, praise God, and I have felt good with only minor nausea.

Here is a tentative schedule for the remaining rounds when I’ll be in-patient in the hospital (~4 days each time):

• Round 3: Monday-Thursday November 4-7
• Round 4: Monday-Thursday November 18-21
• Midway MRI, lumbar puncture, CT/PET scan
• Meeting with lymphoma team at Northwestern University – November 26
• Round 5: Monday-Thursday December 2-5
• Round 6: Monday-Thursday December 16-19
• Round 7: waiting to be scheduled
• Round 8: waiting to be scheduled
• Likely stem-cell transplant in the first part of 2025

How are you feeling these days?

Nausea, tiredness and pain in my legs, back and hip are the main things I’m dealing with at this time. I’ve been on steroids for about 3 weeks and this made me feel much better – until I started coming off. This morning I had a pain attack that kept me on the couch for a few hours in the morning. It can come and go depending on many factors. I can do limited exercise like walking and cycling when I feel up to it. When I get to go cycling, I feel God’s pleasure! No running due to how the pain affects my legs and my lowered red blood cell counts. Some days I take naps. Nausea is a constant companion, and I take medication to combat that. It’s weird to feel like I should eat and also feel nauseous at the same time!

It sounds like you’ve been having pain symptoms for a while – why didn’t the doctor catch this sooner?

I know! I had my first symptoms of lower back pain followed by some numbness and pain in my hips and right leg. My pain kept changing, and slowly getting worse, and I was chasing other diagnoses e.g. pinched nerves and fibromyalgia. When I went in for my 3-month oncology treatment in Thailand, I had a clean CT scan and good blood levels – nothing to worry about! As it turns out, what I actually have is a rare form of recurrent lymphoma only present in the central nervous system (CNS) and not systemically throughout my body like last time. So, the blood tests and CT scan would not have caught this. The only signals were weird pain and numbness that masked as other problems. I wasn’t experiencing the same health decline as before – this was different. I can see God’s mercy in this recurrence however, as strange as that might seem.

You were rushed back from Thailand to the USA quickly – was this an emergency?

In a word, yes. After waiting 4 days for spinal tap results, I was diagnosed on Friday, flew to the USA on Saturday, and then drove to the emergency room on Sunday. It was faster than I could imagine! My doctor in the USA, after consulting with me on the phone about the results, said I should return to the USA for treatment ASAP – don’t wait. He would meet me in the ER in Grand Rapids to get started with further testing and treatment. He explained that symptomatic CNS lymphoma is considered an oncological emergency. “How long have you had these pain symptoms? A few weeks?” “Um, about 4 months starting in May”, I replied. — silence on the line — I don’t think either of us quite knew what to make of the facts. But God in his mercy kept me alive and kept the lymphoma from progressing even when I didn’t know what was going on. In my own words, “I should be dead, right?” He agreed with my assessment. Undeniably God’s mercy.

What is a stem-cell transplant?

A stem cell transplant, also known as a bone marrow transplant, is a procedure that replaces damaged stem cells in the bone marrow with healthy ones to treat lymphoma. In order to qualify for this treatment, I need to be in complete remission following the 8 rounds on chemotherapy explained above. An autologous stem cell transplant (meaning, my own stem cells) is one treatment option used when lymphoma reoccurs, which is my case. This procedure is the agreed upon next step treatment plan by my doctor team, slated for some time in early 2025, once I qualify. So much of the course of treating lymphoma “depends on how it’s going”. So, we can make plans, but those plans are very dependent on how things go and may change significantly. Here’s an outline of the transplant process that I hope to undergo in 2025:

• I will check into a transplant center where I stay isolated for 3-4 weeks. Some visitors may be ok, but the idea is that I am protected from outside exposure to illness.
• I will be given a cell growth hormone to stimulate my body to produce lots of stem cells.
• The doctors will harvest my own stem cells using a process called apheresis and keep them in the freezer 🙂
• High-dose chemotherapy will be given to kill all the fast-growing cells in my bone marrow. (red blood cells, white blood cells, lymphoma cancer cells, etc.)
• My own stem cells are reintroduced into my body through a process called engraftment. God’s amazing design for the body is that stem cells just “know where to go” and are able to find their way back to the bone marrow to begin to produce new healthy cells.
• The medical staff will monitor blood levels every day to measure the progress of engraftment. During this time and for some months afterward, I will be more vulnerable to infection and sickness.

Lamentations 3:22-23 ESV

The steadfast love of the LORD never ceases; his mercies never come to an end;

they are new every morning; great is your faithfulness.