It has been quite a while since I’ve written an update, so this post will be somewhat lengthy as I recap the past weeks. This has also been, by far, the hardest update to write.

If it’s tl:dr, please just skip to the prayer requests at the end. :-)

Chemo rounds 21-24 were blessedly mild in terms of side-effects. Other than the expected fatigue for 3-4 days following the infusion, the nausea, loss of appetite, and other awful side effects were almost entirely controlled by medication during each of these rounds. It was so nice to be able to have a few weeks where my off-chemo weeks were nearly normal, other than having less energy than usual!

As a family, we hit a few major milestones – Matthew and Raegann upgraded from their toddler beds to a big boy/girl bunk bed. Although beds are supposed to be for sleeping, the bunks ended up being their favorite play spot for the next week and a half or so. It was a great joy for me to be able to help Melissa assemble the beds and to see the pure happiness on my children’s faces as they built forts and played castles and dragons on their wonderful new sleeping arrangements.

Matthew and Raegann's new bunk beds

A second big milestone was the removal of Matthew’s training wheels from his bicycle. Although he’s only 4, turning five in late August, it seemed like he was ready, so Melissa took them off and spent some time helping to stabilize him as he rode back and forth down our driveway and into the cul-de-sac. After about 75 minutes of practice with Mommy’s help over two different days, he was cruising around the neighborhood like a pro. Of course, Raegann (2 years old, turning 3 in July) now thinks she is ready to remove her training wheels as well. We'll see...

And now, the update on my chemotherapy and other treatments. You may remember that the eight rounds of radiation treatments I had at UT Southwestern in December and early January were incredibly effective at reducing my pain. For the sake of future comparisons, doctors ordered a full chest, abdomen, and pelvic CT scan once the radiation treatments were completed so that the effectiveness of later treatments (specifically, the systemic chemotherapy treatments) could be precisely measured.

Those eight rounds of radiation were a resounding success! For more than six weeks immediately following treatment, I was able to completely eliminate the narcotic pain killers I was taking for back pain caused by the tumors in my back muscles and near my spine. In fact, since I cannot take over-the-counter NSAIDS and most other OTC pain killers because of my stomach tumor, I was off of ALL pain killers during that time.

This brief respite from the narcotics and their associated side-effects was a true blessing. However, starting in early March, I began experiencing minor pain in my left leg that seemed to originate from a small lump near my groin. My local medical oncologist confirmed that this was a swollen lymph node, and encouraged me to keep an eye on it during the coming weeks. Although the node itself didn’t seem to grow very much, the pain in my leg continued to become more severe, resulting in the necessity of recontinuing the narcotic painkillers, although at lower doses than I had previously required.

As time passed, the back pain returned as well, indicating that there may be new tumors in my back that aren’t responding well to the new chemotherapy regimen of Irinotecan and Paclitaxel. Over the first few weeks of March, the pain in my left leg and back grew to the point where I was limping to avoid full extension of my left leg, and I was forced to return to even higher doses of narcotics to control the pain. My local care team offered to order CT scans at that time, but since I had prescheduled scans at MD Anderson in just two weeks, I opted to wait and have the scans done only one time.

As many of you know, we traveled down to MD Anderson in Houston March 15-19 for new scans and follow-up appointments with my medical oncologist and her team there. In order to avoid as much Houston traffic as possible, we left on Wednesday late morning and returned home to Dallas on Saturday late morning.

We took both kids and made a mini-vacation out of the trip. The hotel’s indoor pool was a hit, and turned out to be a great way to burn off some of the seemingly endless energy that powers our children. For them, even staying for several nights in a hotel was a fantastic adventure. Daddy got to show them the fun of jumping on a king-sized bed in a hotel room (but NEVER at home!), and how to make a bed out of a pull-out couch. Since we stayed at the Jesse H. Jones Memorial House Hotel, which is directly connected to the UT Medical Center, there was even a self-serve frozen yogurt bar just a short walk from our hotel room, and this also turned out to be a huge hit with the tiniest Yales.

Everybody is ready to swim!

On March 17, I had a complete chest, abdomen, and pelvic CT scan to compare with the post-radiation scans from January, and on March 18, I had a follow-up appointment with my medical oncologist and her team. Based on the few side-effects that I’d experienced from the new chemotherapy regimen and the mostly good days I’d been having over the past two months, I was hoping for good news. Certainly, both Melissa and I were concerned about the enlarged lymph node in my groin and the pain in my left leg and in my back, but we were hopeful that the chemotherapy was keeping the other tumors in my body at bay, and that radiation could again be used on the tumors in my leg and back that didn’t seem to be responding to the chemotherapy.

Unfortunately, the news we hoped for was not the news we received. The comparison of the two CT scans revealed that the chemo regimen I had been on for the past eight weeks had been completely ineffective at slowing the growth and spread of my cancer. Existing cancer sites in the lymph nodes, the stomach tumor itself, and the tumors in my psoas muscles (in the back) were all larger in the March scans compared to the January scans. Even worse, new lymph nodes which had previously not shown involvement were growing larger with new cancer tumors, and there were new tumors in both my liver and my spleen. Essentially, the combination of Irinotecan and Paclitaxel had done absolutely nothing to slow the spread of my cancer.

My oncologist explained that treatment options were becoming more and more limited due to the number of treatments I had already used to combat this aggressive form of adenocarcinoma in my body. Although there are about a dozen drugs commonly used to treat gastric (i.e., stomach) cancers, many of them are related, in that they use the same mechanisms to kill cancer cells. Thus, if you’ve had one of the drugs in the family, it is pointless to use any of the other drugs from the same family. So far in my treatment, I’ve received Oxaliplatin (in the platinum-based family of drugs), 5-FU, Irinotecan, and Paclitaxel.

Given that all of these drugs have become ineffective (or were never effective) at treating my specific cancer, the only remaining drug FDA approved for the treatment of gastric cancer was Ramucirumab, a monoclonal antibody therapy. The problem with using Ramucirumab in my case is that it is a drug that is typically ineffective on its own – it is almost always paired with Paclitaxel to produce the greatest benefit for patients. Since I had already been on Paclitaxel for 8 weeks with zero reduction or slowing of the cancer in my body, using the Ramucirumab + Paclitaxel regimen seemed like a poor option in my case.

My oncologist from MD Anderson spent some time consulting via telephone with my local oncologist here in Dallas, and they both agreed that the best option for me at this point in my treatment was to try to get an off-label prescription for an immunotherapy drug called Keytruda. Keytruda is FDA-approved for the treatment of several types of cancers, and there are ongoing clinical trials testing its effectiveness in patients with gastric cancers that have shown extremely positive results in some patients.

Given the advanced nature of my gastric cancer, entering one of these clinical trials is not an option for me. However, it is sometimes possible for physicians to petition the drug manufacturer (Merck, in this case) for compassionate care provision of the drug at no cost for patients who do not qualify for clinical trials. My local oncologist was willing to attempt this, and although all of the paperwork has not been finalized, it does seem as though Merck will provide Keytruda for me at no cost. We are praying that any further delays are minimized, and that Merck does agree to provide the drug to my oncologist as part of a compassionate care protocol so I can begin the immunotherapy regimen as soon as possible.

Upon returning to Dallas, I consulted with my radiation oncologist about a second round of radiation to target the lymph node in my groin and the new tumors near my spinal cord and in my psoas muscles that seem to be the primary source of my back pain. He reviewed the scans from MD Anderson as well as some MRI scans that he ordered here in Dallas, and agreed that palliative radiation treatment would likely reduce or eliminate much of the pain that I’ve been experiencing.

Complicating all of this, starting around March 23, I started experiencing severe abdominal bloating. Drinking liquids and eating food seemed to result in extreme swelling of my abdomen that never fully resolved. It would be somewhat reduced in the morning, but after a normal intake of fluids, the abdomen would become swollen and almost hard to the touch. March 23 was also the day that I noticed swelling in my left leg from the knee down to the foot. I monitored these symptoms through the weekend, and went in for an unscheduled appointment with my local oncologist on Monday, March 27. He ordered an ultrasound of my abdomen and left leg to check for blood clots, as well as a CT scan of the abdomen to look for other abnormalities that might be causing blockages. The ultrasound was completed same-day and did not show any blood clots or blockages in my left leg. The CT scan was scheduled for Wednesday.

The actual process of completing the CT scan on the morning of Wednesday, March 29, proved to be extremely painful. The four-hour trip to Houston and back, as well as the discomfort that sometimes comes from sleeping in an unfamiliar bed, wrought some havoc on my lower back muscles. You may remember from previous posts that my back is somewhat prone to easy injury. After returning from Houston I was able to sleep in my bed for one or two nights, but since then, have been sleeping in a recliner with my legs up, but with almost no recline for my upper body in order to keep my back muscles from tightening up and devolving into painful spasms.

The CT technicians were incredibly sympathetic with the back pain that I was experiencing when lying flat on my back, so they would lie me down, snap a set of X-Rays, and then quickly re-enter the CT room to lift me back into a sitting position and reduce my pain. Although I was only lying flat for a total of about two minutes for the abdominal CT scan, it was enough to put my lower back muscles into severe spasms that didn’t resolve until I returned home and treated them with an extremely hot shower.

This period of spasmodic activity seemed to further injure my lower back muscles, which created an even bigger problem on the evening of the 29^th when I was scheduled for my first of 8 radiation treatments to help eliminate the back pain caused by tumors near my spinal cord and in my psoas muscles. Due to the injury of my lower back muscles caused by the spasms during the morning CT scan, I was unable to lie on my back in the radiation machine for more than a few seconds. My pain level would go from a 2 when standing or sitting upright to a 10 when lying completely flat. I went home without completing my first radiation treatment with the instructions to return for my next appointment the following evening after allowing the back muscles to rest for a day.

I consulted with my medical oncologist about the pain, and he suggested the doubling of most of my narcotic pain medications in the doses immediately prior to my radiation appointment, as well as the addition of a muscle relaxer and Valium to reduce further spasmodic activity. I returned for the second radiation attempt on Thursday evening and attempted to lie flat in the machine. Sadly, even though I had enough drugs in my system to be considered essentially under conscious sedation (per my radiation oncologist), the pain was so severe when I was placed on my back that I was again unable to receive treatment. It’s a classic Catch-22: I need to be able to lie on my back to receive the radiation to eliminate the pain so I can lie on my back.

The current plan is to attempt a new simulation study on Tuesday (April 4) where my radiation oncologist and his team will try to find a new position (i.e., not lying flat on my back) that I can tolerate long enough to complete the radiation treatments.

The abdominal CT scan from the morning of March 29 did reveal a stool blockage that my local oncologist suspected could be the cause of my abdominal bloating. Narcotic pain killers as well as one of the anti-nausea drugs that I take all contribute to constipation, and although I was taking medications to deal with this, it appears they weren’t quite doing their job.

My doctor prescribed an even more aggressive regimen of stool softeners and laxatives, similar to a protocol a patient might go through prior to colon or intestine surgery. After these treatments had been completed, the bloating in the abdomen and the swelling in the left leg and foot continued. The constant tightness of the abdomen makes it incredibly uncomfortable to eat and drink normally, as any additional fluids or solids entering the abdomen only further increase the pressure on the already bloated area.

As it stands now, I am still sleeping in a recliner, allowing my back muscles to rest and recover as much as possible. Next Tuesday I will go back to my radiation oncologist for a new simulation study to try and find a position I can tolerate so I can receive radiation therapy targeting the tumors in my psoas muscles, my groin, and near my spinal cord. In the meantime, we continue to wait for approval from Merck for compassionate care provision of Keytruda so that my treatment with the immunotherapy drug can begin (note: both my medical and radiation oncologists agree that this immunotherapy drug and the radiation protocol can be provided concurrently, so as soon as approval for Keytruda comes in, I can begin treatment).

If you have read this far through this incredibly long update (so sorry!), you have probably gathered that my prognosis given these recent developments is poor. The radiation treatments, should my team be able to find a position that I can tolerate, are purely palliative in nature. They will reduce my pain, but they are not curative. Similarly, although Keytruda has shown some amazing results with some patients at fighting back various cancers, it is still at an investigational phase vs. gastric cancer, and in all likelihood, will not work for me.

In short, I need a miracle from God. It is a prayer I have prayed nearly daily over the past year: “Dear Jesus, I know that You are able to heal me; I ask that You will.” Over the past several weeks, I have prayed that prayer dozens of times every day: every time I hold one of my children in my arms; every time I embrace my wife; and every time I am reminded of one the future milestones I will miss with my beautiful family, I can’t help but utter it once more.

I know that Jesus, fully God and fully man, walked on this earth and healed thousands of people during his short ministry. I know that same Jesus sits now at the right hand of the Father in heaven, petitioning the Father on my behalf and on behalf of all those who cry out to Him. With this full knowledge that God can heal me, I also recognize that He may choose not to. In His view, so far beyond my understanding of the world that is limited and bound by temporality, my seemingly early death may produce the most good in this world. As hard as it is to acknowledge this, I know that whatever happens to me, the view from eternity will make all things clear, and the reality of eternity in heaven with my Savior is far more precious than any additional seconds I might spend upon this earth.

And so, I hug my children as often as I can; I whisper in their ears how much I love them and how proud they make me; I affirm my wife every chance I get; I take the steps that I can to provide for my family and to leave them with good memories of their Daddy and spouse. I write these words mostly for them, so they can have a glimpse into the heart of their father, and ultimately so that they will someday know, beyond a shadow of a doubt, that they have a Father in heaven who loves them far more than I ever could.

Thus far, I have been able to continue to teach my classes at University of Dallas, and I find my time with my students to be invigorating and therapeutic. So long as I have breath in my lungs, I will continue to teach, as it is an activity that brings me so much joy.

For those of you who continue to pray for us, please remember these requests: 

• Modern medicine has mostly exhausted its options for me. I need a miracle from God to experience long-term survival given the recent progression of my disease.
• For quick approval from Merck so I can begin immunotherapy treatment as soon as possible.
• For fast healing of my back muscles and success on Tuesday at finding a new position so I can successfully complete the eight palliative radiation treatments.
• For my wonderful wife Melissa, who is watching her mother and her husband battle this terrible disease at the same time, and who is constantly going above and beyond what anyone should be asked to do as a caretaker: for our children, for me, and for her mother.
• For Melissa and me as parents, as we begin to talk about death and dying in new ways with our children.

We are so thankful for all of you who have faithfully walked this journey with us; those who have prayed for us; written encouraging notes and cards, provided meals, assisted with monetary gifts, watched our children, and all the myriad ways you have shown love to us over the past year. We can never repay the love that we have been shown, and we are forever grateful. We love you all.

Rob, Melissa, Matthew, & Raegann