There are many wonderful things to report since my last update. For one thing, I have a new job! If you read my updates from LinkedIn or Facebook, then you already know this. One day in mid-March, I was driving Jesse to one of his appointments. I received a call from the director of the Student Transition and Support (STS) program at East Texas A&M University, so Jesse got to hear the conversation, and celebrate with me afterwards. I interviewed at ETAMU in April and started my new position on May 6. I am serving as a College Life Coach and Instructor in the STS program. Specifically, the program works to support first-year students’ success at the university as part of the larger Student Success Center. I’ve met great people and already love it at ETAMU. I am happy to get to teach and write curriculum, and I love the energy and philosophy of the university.

Brian, Jesse, his girlfriend, Ashley, and I traveled to Alaska to visit our oldest, Jacob, his wife, Gaby, and our grandson, James at the beginning of July. We were there for 10 days and saw so many amazing things! It is really beautiful there, and it was really hard to say goodbye. Brian and I are already planning our next trip back.

This is our family at the Alaska Wildlife Conservation Center in Girdwood, Alaska.

Jesse and Ashley just moved into their own apartment last weekend. Jesse has transferred to the University of North Texas to finish his degree in Business. He is continuing to follow his maintenance treatments with Ashley’s support. His next task is to find a job in Denton. He’s already got an interview lined up. I’m so proud of him!

Jacob, Gaby, and James are doing so well. Alaska is no joke! We saw lots of wild animals, and the weather and terrain can be brutal. During our stay, it never really got fully dark, so that is a strange thing to get used to. They have managed to develop strong friendships and good resources for themselves. They have had lots of great experiences and have many more planned.

Matthew continues to thrive. He is fulfilling his own personal goals and is doing great. He just got back from a trip to Pittsburgh to see some friends and is going on another trip to Colorado Springs very soon.

Lily has graduated from Patient Care Tech training and begins Licensed Practical Nurse training in the next few weeks. She is also doing very well and is on her way to becoming an RN. She likes living in the big city of Dallas and has accomplished so much already. She is fostering a new kitten named June, as well.

Finally, Brian and I have renewed our commitment to our health and well-being. I have been lifting weights three times per week, thanks to an employee wellness program at work through the recreation center/gym on campus. After a truly stressful year, we are trying to get healthy so that we can have long, active lives. Brian has already lost 25 pounds! I have lost 0 pounds, lol.

I hope that things are going well wherever you are, and that you are looking for rainbows if the storm clouds are roiling above you. I have friends who are battling through their own cancer journeys, and I think of them often. I know that it isn’t easy.

Until next time,

Jennifer

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”

―Lord Byron

First, Jesse is doing much better relative to how he was one year ago. He has come through the first four phases of intensive cycles of chemotherapy. That was no small feat, as he nearly died before he even got started with treatment. It was only much later that we learned how close he was to death when he was initially diagnosed.

One year ago, Jesse and his brother, Matthew were on a camping trip in New Mexico for Spring Break. A windstorm had blown in suddenly, so they decided to travel back early.

This photo was taken on March 17, shortly after the guys arrived at the campground. Matthew was cooking supper in the background. Jesse was noticing that his heart rate was really high during this time. He had been having trouble breathing, and he was constantly fatigued. He’d been having unexplained bruising for several months.

When the windstorm hit on March 19, they made the harrowing drive back in blinding dust and high winds. Brian and I were happy that they made it back safely. Understandably, they were disappointed to have to cut the trip short. Jesse was feeling poorly, and we attributed it to the winds, dust, and lack of sleep. By Thursday, March 20, Jesse was feeling really bad. Brian suggested he go to urgent care. He thought maybe Jesse had bronchitis or pneumonia. The medical personnel at the urgent care clinic examined Jesse and took an X-ray of his chest. It became clear that something was seriously wrong, though they took pains to try not to scare him.

They gave him a printout of his visit with a QR code to take to the nearest ER. Jesse called Brian and I, and we agreed to meet him at the ED of Medical City of McKinney. I got there first, then Jesse. I should’ve known from how quickly they brought him back to triage that something was wrong. I had no idea what we were in for. He was brought back to a small room where the nurses and the doctor on duty began performing tests. He was X-rayed again and lots of blood was drawn in the biggest vials I’ve ever seen. I remember that they looked like those small bottles of alcohol you get on an airplane. Everything happened so fast.

A doctor came in to the little room, kneeled before Jesse and told him that he had a tumor in his chest, and that he had seen this situation many times before in young people his age. He said that he thought Jesse had lymphoma, but that they were going to do more tests to confirm this. He reassured us through the course of our time there that this type of cancer is very treatable. I don’t remember a lot of what he said because Jesse was crying. I think I was in shock. I remember that I didn’t believe the doctor. Even as I write this now, it’s upsetting to think about that moment. I thought he was just telling Jesse he had cancer to keep him from leaving. I think that my mind couldn’t process what was happening.

After the doctor spoke with Jesse, I met him in the hallway and asked him if he was serious. I just didn’t believe that Jesse had cancer. The doctor assured me that he was, and showed me Jesse’s chest X-ray. I’d never seen a portable X-ray machine, and the doctor showed me a large tumor in Jesse’s chest, about the size of a man’s fist. He also showed me that there was a lot of fluid in Jesse’s left lung. He was drowning.

The next few days are a blur. I took a few pictures so that I could remember what was happening. I have a type of photojournal of the last year, though many of the pictures are too painful to look at now. The picture above was on March 21, after Jesse had had a biopsy of the tumor and his lung drained. They removed a liter and a half of fluid from his lung. I remember that these procedures were painful for him, and it was during this time that we discovered that even strong pain medications don’t work on Jesse. I remember calling our daughter, Lily, to tell her what happened, and I couldn’t stop crying to give her the news. I didn’t mean to scare her, but I did. I called my mother and brother, and those were hard calls to make. Brian called our other sons, Jacob and Matthew, and called his mother.

With all that Jesse went through between March 20 and March 22, when he was discharged, it is astonishing to know that the hospital released Jesse to go about his business. The oncologist on staff told us to come back in a week for the exact diagnosis and treatment plan. They even told him to go to classes and let his professors know! The reason that this is astonishing is that the standard protocol for Jesse’s cancer is to be immediately admitted for treatment. He should’ve gone right into the hospital so that he could start chemo. He was driving, staying at his apartment on his own, and walking around campus. All the while, the tumor was growing and causing fluid to build in his lung. He was a ticking time bomb, and we had no idea because they’d dismissed us and told us to come back in a week.

I’m going to have to pause here at this point in the story. It is emotionally exhausting to think about these things, and I keep having to stop to cry.

I think it’s best at this point to say that I’m grateful that Jesse survived, despite the poor choices of his initial treatment team. He is strong, and continues to amaze me. His team is still working on getting his chemo doses right. He’s having to take a break from chemo for a few weeks because it knocked his platelets and neutrophils down. He’s neutropenic right now, so we’re having to be careful. He’s still anemic, though his hemoglobin has improved and he isn’t needing transfusions.

I was telling a friend recently that despite the scary times over the last year, there have also been moments of great joy. At times, we’ve laughed harder than I ever thought possible. I’ve experienced terror, gratitude, awe, happiness, and relief. I’ve watched our family weather the storms of the past year, and find rainbows in the midst of them. I’ve learned a lot. I’m happy Jesse is still here. I’m really happy that we have hope that he’ll be here for the foreseeable future.

Jennifer

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”

―Lord Byron

Today is Jesse’s 23rd birthday. I’ve been looking at old pictures and videos of Jesse this morning. I was surprised to see that I don’t have any photos from his birthday last year. I’m sure that he was celebrating with his friends. I’m pleased to say that Jesse will be celebrating with family and friends this year, and that I intend to take lots of pictures. :)

If there is anyone who deserves to celebrate a birthday, it’s Jesse. I’m grateful that we all get another opportunity to show him how much we love him. I’m grateful that Jesse has a bright future ahead of him. I’m happy to have him, and always have been. I recognize how close we came to losing him, and am so, so glad we didn’t.

Today, I’ll be celebrating my rainbow baby, and the toughest rainbow in my storm clouds: My son, Jesse. I love you, Son.

Gratefully,

Jennifer AKA Mom

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”

―Lord Byron

In a previous post, I said that cancer colors everything. It has challenged our ideas about a things that we have taken for granted, like having good health and plenty of time. I won’t speak for Jesse on this, but I think he’d agree that his hard-won remission is something that he is grateful for.

During his last hospitalization, he was stuck in the hospital for 5 days. That’s a lot of time spent in an uncomfortable bed with restricted movement. For Brian and I, we’ve spent a lot of time in uncomfortable chairs watching our son go through the hardest treatment we’ve ever seen. We are all eager to relinquish the waiting rooms and chemo infusion bays. Jesse has had to draw on strength that none of us knew he had. I am grateful for his strength, but I’m also really grateful for the expertise of his oncology team at UTSW. They have brought him through so many close calls.

Jesse begins course 5 on Monday, January 12. This will be the lightest—and longest—chemo phase. He will take chemotherapy meds daily for 3 years. He’ll also receive monthly infusions of Vincristine, and quarterly intrathecal infusions of Methotrexate. I think that this phase will be difficult for a different reason than the others. I think that this phase will require commitment to stay the course, when there is no obvious reason to do so. As with each chemo regimen, survival extends exponentially with completion. Dr. Irizarry told us that completion of course 4 extends the life of patients significantly, though she can’t give us an exact number of years. She also told us that not all of her patients have been able to complete course 4 because it is so hard. When she told us that, it gave me some relief that Jesse completed this phase. It also scared me a little bit. It could have gone so differently.

Jesse has an immune system again. He is making blood, also, though it will be several weeks before he is no longer anemic. It will take time for him to build stamina and strength. The first three months of maintenance are a bit challenging to figure out the right dosages, so that’s a task that Jesse and Dr. Irizarry will tackle together. We anticipate that Jesse will be returning to school and work in a few months, and he will not need me to be his chemo buddy anymore. I’ll need to find another occupation, which I’m happy to do.

I will post updates periodically, but I anticipate that I’ll post much less frequently.

Our rainbows:

• Our friend Rebekah Myre made a delicious meal for us after Jesse returned home from the hospital. There is something so nourishing about having someone do a nice thing for you, especially when it involves chocolate cake!

• Jesse is feeling better. He’s laughing and making jokes again. It had been a rough month. I know that he’s hurting and doesn’t feel good when he doesn’t laugh.

• We have hope that 2026 is going to be better. We are looking forward to traveling. I am especially looking forward to seeing our oldest son, daughter-in-law, and grandson in Alaska.

As always, I am grateful for the love and support we’ve received this last year. This has been the hardest year of our lives. Jesse isn’t done yet. There is more work to do, but I am confident in his ability to manage this phase. The calls, texts, cards, and gifts have helped to get us through. Thank you for continuing to think of us. You have been rainbows in our storm.

Gratefully,

Jennifer

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”

―Lord Byron

Last week was Thanksgiving and Matthew’s birthday. We celebrated both on Thursday, and my mother came up to visit us on Friday. She stayed through Sunday, which was nice. It was really good to have her here. Jesse had chemo on Monday (11/24), a blood transfusion on Wednesday (11/26), and chemo on Friday (11/28). Unfortunately, the blood transfusion required an ER visit. It was relatively painless, though. The ER wasn’t very busy, despite it being the day before the holiday.

Jesse doesn’t have chemo this week, thankfully. He had labs on Monday, and again on Thursday. We are hoping that he doesn’t need blood, and that his immune system will remain active for a bit longer. Days 29-42 (December 8-22) of this course are the hardest due to the chemo regimen and what it does to his immune system and production of red blood cells. He will likely need infusions several times during this two-week period. We are hopeful that he will not get sick or require any further visits to the ER.

Brian wants to share with all of you something that happened to him yesterday. He told Jesse and I about this last night, and it brought tears to my eyes:

So here is how I know that the world is all connected and sometimes beautiful things happen even when times are tough:

I’ve been feeling a little sick for the past few days, mainly sinus pain and pressure, so I knew it was time for me to visit my local urgent care for a checkup and a steroid shot. It’s a place that I have been visiting for years so they have some familiarity with me. As I settled into the exam room, a young nurse took my vitals and asked me why I was there today. I told her my symptoms and I wanted to make sure I didn’t have anything that would require that I be isolated from my son, Jesse. As I explained to her his illness and the course of events on how we discovered that he had leukemia, her eyes widened and she said “I think I saw your son the day he came in. Yes, he was talking about a camping trip to New Mexico with his brother”. As I confirmed that she did see Jesse, we talked about the day he came in. She was the person who took the x-ray that told their office that he had fluid on his lungs. She was the one who called ahead to Medical City in McKinney and got the x-ray over to their ER. It was a very serendipitous moment for both of us. Then she wanted to know how he was doing, like a personal connection had instantly developed with her and Jesse. I told her he was progressing very well and that he has a very good chance for cure. I then thought for a moment. I told her, “You saved my son’s life!” Had he been released and she and her office not acted quickly the way they did, he most certainly would have died. Her reaction was unexpected. Knowing that her decisive actions had led to the discovery of Jesse’s cancer and subsequent treatment brought a wave of emotion over her. She grabbed a handful of Kleenex and began to cry. She told me that nothing like this had ever happened to her. She asked me a few more questions, then blurted out “Can I give you a hug?” She gave me a good hard squeeze and thanked me several times for sharing this precious moment of Jesse’s life and the part she played in his cancer journey. For me, it was very cathartic, healing, and a reminder that there is always much more good in the world than bad, and how we are connected.

I think that we can agree that the young nurse was a rainbow in our lives, and Brian was a rainbow for her yesterday. I am so grateful for the myriad ways that Jesse’s life has been saved over this last year. Even before his diagnosis, the brakes failed in the work truck that Jesse was driving while he was traveling in heavy traffic on Interstate 75. This was a mere month or so before his fateful visit to the urgent care on March 20. There have been a lot of close calls, and a LOT of hard conversations. I’m grateful for the brave souls who have helped us along the way, simply by being forthright.

Thank you for continuing to think of us, and for holding us close to your hearts. We take great comfort in knowing that we have lots of people praying for us.

Jennifer

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”

―Lord Byron

The MRI is obviously more precise than an echo. The results of the superior test showed that the clot is completely gone! This is great news, because it means that Jesse will not have to go through the potentially risky surgery to remove his port and install a picc line. Picc lines could be more susceptible to infection because of the location it would be in, so we are doubly grateful that he’s both clear of the clot and not needing to have surgery. This also means that treatment continues without delay, and that the blood thinners he’s been taking have done their job.

Most of week 1 went well. Jesse received a second dose of Velcade on Thursday, which led to a bad pain day on Friday. Jesse had level 10 pain in his knees, and we were close to going to the hospital’s acute care clinic. We discovered that he hadn’t been taking his second dose of Dexamethazone (corticosteroid) on Days 1-4, so he wasn’t receiving the benefit of the anti-inflammatory properties of this medication. A common side effect of Velcade is knee/joint pain, so Jesse made sure to take the Dexamethazone for the remainder of the week. Matthew and I worked to help Jesse with the pain. Matthew made an ice pack for his knees, and I gave him antihistamines and Tramadol to try and reduce his body’s inflammatory response and to take the edge off of the pain. I also massaged his legs to try and move the fluid off of his knees, which helped a lot. Jesse said that the massage was the most effective in battling his discomfort.

The remainder of week 1 was fine, other than some fatigue and soreness in his knees. He was able to manage it without additional meds. Week 2 began with a bang, however. Jesse received a dose of Doxorubicin on Monday (day 8). This is a bright red medicine that is nicknamed the “Red Devil” due to its color and fun habit of making patients feel terrible. He didn’t feel great after the transfusion, but he was functioning well enough that we were able to stop and get lunch on the way home. So far, so good.

I’d picked up short ribs from the grocery store that I intended to make for supper. Jesse had the idea of using the new mandoline he’d bought a few weeks ago to slice potatoes for potatoes au gratin. I should mention that one of my fears with Jesse taking these strong blood thinners is that he might cut himself, or that he might fall and hurt himself. He is very unsteady and Dr. I diagnosed him with grade 2 neuropathy due to his balance issues. On Monday, he wasn’t feeling well and took some extra meds to help. Let’s just say that Jesse should NOT have been using a sharp instrument of any kind. He cut his thumb badly. It was very scary, and it took 20 minutes to get the blood to slow enough that I could wrap it in a bandage. He nearly fainted twice, and berated himself for using the mandoline in his impaired state. All I can say is that I was in terror. I kept it together in order to get the bleeding under control. He knew he had scared me, which made him feel worse. We survived, if a little worse for wear.

We cleaned and rebandaged the wound yesterday. It bled freely again, but not as much as the day before. Jesse is sleeping in this morning. He wasn’t feeling well yesterday, so he needs to recover today. He just has labs tomorrow at the clinic in Richardson. His labs were good on Monday: He is still producing his own blood, his liver enzymes were good, and his immune system is functioning well at this point. His next chemo infusion is Monday, November 24. Brian and I are tired, but hanging in there.

In other news, Brian scheduled our holiday lights installation on Saturday. I’ve got more Christmas decorations to put out. I love the way our house looks all lit us.

Thank you for keeping us in your thoughts and prayers,

Jennifer

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”

―Lord Byron

Yesterday was a busy day at UT Southwestern. This was day 1 of the 45 day course, so we met with pharmacy to go over the chemo regimen and with Dr. Irizarry to go over details of treatment and to discuss port removal. She and the cardio-oncology team have decided that the blood clot has definitely formed around the tube from the port and so it must come out. Surgery will be scheduled soon to remove it, and then he will have a picc line inserted in his arm for about a month or so to continue chemo.

Jesse received two chemo medications yesterday: Velcade (Bortezomib) and Doxorubicin (“red devil”). He also began a 7-day course of Dexamethazone, a strong steroid. He received two strong anti-nausea meds, which made him very sleepy. He was able to eat a good lunch from the clinic cafeteria and kept everything down. Dr. I stressed to Jesse that he must move often, drink lots of fluids, and eat three meals every day. This is easier said than done, but his recovery depends on his adherence to these three things.

Jesse, Brian, and I have all been experiencing anxiety around this course. It is scary to know that this is the hardest one of the five courses. He did well yesterday, which was a big relief. I can hear him getting sick in the bathroom this morning, so today is going to be tough.

As we left the sixth floor yesterday, we joined a young woman on the elevator who had just left her own appointment with her oncology team. I apologized that we were moving slow. “It’s fine,” she said.

The young woman looked over at Jesse. “Hey, did they talk to you about a bone marrow transplant?”

“Yeah,” he responded, “but luckily I’m doing a brand new treatment that doesn’t require it.” (This was a slight oversimplification of the situation, but essentially true.)

The young woman seemed unsure. She looked confused and worried as she stepped off of the elevator. “It’s scary, isn’t it?” I offered. She nodded as she walked towards the doors of the main entrance.

“The thing is, if they’re recommending it, it means that they think it’ll help since it’s such a serious procedure,” I said. The young woman nodded and waved to the shuttle bus driver parked out front.

“Good luck,” I called to her. “Yeah, you, too,” she stammered, looking at Jesse. The young woman looked troubled as we parted company. I couldn’t help but wonder whether she has a support system to help her get through the months to come. No one should have to hear scary news all by themselves.

Jesse slept all the way home from the hospital, and for a few hours after we got home. A few months ago, I bought a subscription to Universal Yums for a monthly snack box to try, and the November box was waiting for us when we got home yesterday. After supper, we all tried snacks from Germany, with Matthew serving as the “host” for the box. I try to find fun things for us to do that lighten the stress a bit.

Today, Jesse has a cardiac MRI. We should know the results of the scan in a few days. Tomorrow, he’ll receive another chemo infusion, this time in his lumbar spine. He’ll have labs on Thursday, and a virtual appointment with Occupational Therapy for his neuropathy on Friday. I’ll post an update about the MRI results, and how it’s going throughout this course. Thank you to all of you who’ve reached out with encouragement and support. It’ll be crucial over the next couple of months.

Jennifer

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”

―Lord Byron

He is on a two-week break from chemo, which we are grateful for. He has been suffering greatly with mouth and skin sores and nosebleeds due to last week’s chemo treatment. He received whole blood and platelets transfusions yesterday. He cursed the creator of Methotrexate this week because it was the source of his pain and misery. He received a prescription for an antibiotic ointment to help with the skin sores, and a concoction called “magic mouthwash” for his mouth sores. It took way too long to get both prescriptions. The platelets infusion is supposed to help with the nosebleeds. I washed his bed linens on Wednesday and it looked like a murder scene in there.

He has a follow-up echocardiogram on Monday. We are hoping that the blood clot in his heart is dissolved. Jesse hasn’t been able to give himself the blood thinner shots for a week because of the nosebleeds, so my hopes are diminished somewhat. He also has a follow-up with his PA on Monday to see if the mouth and skin sores are healing well.

The next phase of treatment, Course 4, is scheduled to begin on Monday, November 10. It depends on his platelet count, though. If his platelets are too low, it will delay treatment. Course 4 is said to be a combination of courses 1 and 2, so it will be the hardest one. I am encouraged by how quickly Jesse was able to get in for transfusions yesterday, and for how the team moved things around so that he could be seen in a timely manner. Pharmacy took too long to get the mouthwash, but pharmacy often moves slow. It seems like it has to do with insurance and the availability of medicines.

Jesse’s energy has been very low. Hopefully, the transfusions will help. I will admit that this has been a tough week because Jesse has had a lot of pain. Thursday night was really bad.

Our rainbows this past week:

• We finished the audiobook, Destiny of the Republic, about the assassination of James Garfield. It was very moving. Jesse and I were both fighting back tears as we listened to the ending. We started another book this week called The Fireman by Joe Hill.

• The aphoresis team at UTSW is so wonderful. It is my favorite department. They are so happy there. Because they work so well together, they are great to patients. They treat Jesse and I like honored guests, and they are never grumpy or unkind. It is actually a pleasure to take Jesse there for his blood transfusions.

• Jesse and I made a wonderful dinner on Wednesday night. We made shepherd’s pie. Jesse did the meat filling and grated the cheddar cheese, and I prepared the rest and assembled it.

• We’ve been watching The Bear. It is intense, but the acting and storyline are phenomenal.

• Brian and Matthew are on a pheasant hunt. They’ll be back this afternoon. I’m happy that they can get away for a night and enjoy fellowship with friends.

• Lily handled a flat tire this week on her own. Brian and I were able to provide moral and financial support, and we were very impressed with the way that she took charge of the situation. She has been a rock star this year.

• I am grateful for the blood drive organized by my friend Laura Nelson. Jesse has already received blood products this week, and will likely need blood and/or platelets next week. I know that others will benefit from the blood donated, as well. Thank you to all of you who donated, and thank you, again, Laura.

I’ve had a few people ask me this week if I am taking care of myself. I am. I have my bad moments. I am human. I take care of myself, though. I had counseling this week, and I’ve slept well for most of the week. I have to take care of myself so that I can take care of Jesse. I try to find joy in the moments where I can. I am so very grateful for the staff at UTSW. They are so good to us. They are very often rainbows in our storm clouds.

Jennifer

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”

―Lord Byron

I posted my last update on September 23. On September 29, Jesse received a call from his oncology team asking him to come into the cancer clinic ASAP to go over the results of the cardiac MRI he had on September 19. Because this sounded serious, Brian took off from work to go with us. Jesse’s provider informed us that the MRI showed a 1 cm. blood clot in the lower chamber of his heart, on the same side as his port. The preliminary theory was that the port had caused the clot, and now decisions had to be made regarding the viability of keeping the port in. In the meantime, Jesse would need to inject himself twice a day with a blood thinner called Lovenox. He has been doing this, except when he was instructed not to because he was scheduled for some type of procedure in which excessive bleeding would be a danger, or when the pharmacy was out of the medication.

***A word about Jesse’s port: When Jesse was receiving treatment at Texas Oncology, the oncology team there ordered a double lumen port be placed in his chest to aid in the delivery of chemo and the taking of blood for labs. At the time, we did not question the type of port he received. I did not know that there are different types of ports. Medical City of Dallas installed the double lumen port, and UT Southwestern installs single lumen ports. There are risks to installing a port. It is a foreign piece of equipment in the body, and it is a mainline access point to the heart (here is a primer on chemo ports). When Jesse started receiving treatment at UTSW, the nursing staff often asked about his port because it was different from the ones they were used to seeing.

I have since learned that research has demonstrated greater risk of the implantation of double lumen ports for cancer patients. I found two journal articles reviewing the risks of single lumen vs. double lumen ports here and here. The results of both studies revealed a greater risk for infections and complications (like blood clots and misplacement) with the double lumen ports. This explained why UTSW did not place them in patients receiving cancer treatment there. It also illustrates one of many reasons why Jesse’s treatment at Texas Oncology was so risky. While I don’t intend to badmouth Texas Oncology, I think it’s crucial to illustrate how important it is to be informed when choosing care and treatment. We have friends who’ve received good care with this practice, and are living full and healthy lives. For us, it wasn’t a good fit.***

At any rate, Jesse had been walking around with a blood clot in his heart for 11 days. Jesse had gone shooting with a friend two days before the visit with the provider on the 29th, among other things. On top of all of this, the fact that he had the cardiac MRI when he did was kind of a fluke. It had been a much delayed follow-up after his stay in the hospital in July. We all felt like Jesse had dodged a bullet.

Eventually, it was decided that the port would be removed. This was scheduled to take place on Wednesday, October 8. Between the visit on September 29 and the scheduled port removal, Jesse’s port was accessed 5 times. This was puzzling to us, as we wondered if this was dangerous in light of the presence of the blood clot. Thankfully, there were no adverse effects that we could identify. I’ve mentioned before that Jesse’s veins are shot from chemo, so they really didn’t have a choice but to utilize the port.

The surgical team disagreed with the rationale for removing the port. The surgery to remove it was cancelled, even though we showed up for the appointment as we were instructed. The surgical team consulted with the rest of the oncology team and discussed the matter, and they determined that the risks outweighed the advantages. Jesse had a follow-up visit with a member of the cardio-oncology team on October 10. The cardiologist was supposed to go over the MRI results with us, and Jesse had several questions for her. She indicated that there were no signs of damage to his heart, which is great news. However, she said that she suspected that the port had caused the clot, which was a different conclusion than that of the surgical team. To say that we were confused by this visit would be an understatement.

The past two weeks have gone pretty well, all things considered. Jesse has not had any adverse effects of the blood thinner, and was tolerating chemo well until this weekend. He received infusions of Vincristine and Methotrexate this past Thursday, and an intrathecal (lumbar puncture) infusion of Methotrexate on Friday. The intrathecal infusion is meant to prevent any growth of cancerous cells in his central nervous system fluid. These infusions have caused him a great deal of discomfort from nausea and vomiting these last two days.

That brings us up to date. This week is the next-to-last week of course 3. He has labs tomorrow, and we meet with his oncologist, Dr. Irizarry, on Thursday. We should find out more about what happens in course 4, which is the hardest course of the five. Research literature describes this course as a combination of the first two courses. Course 2 required weekly blood transfusions, sometimes more than that. We are frightened by this next course. I am hoping that these next two weeks will be lighter for him so that he can rest. He deserves a break.

Jesse will undergo another bone marrow biopsy at some point in the next 2-3 weeks. This test determines if he is still in remission, because the oncology team will be looking at the sample to see if there are any signs of cancerous cells out of 1 million bone marrow cells. He is scheduled for another cardiac MRI on November 11. We are hoping that the blood clot will be dissolved.

The rainbows in our storm clouds:

• Jesse continues to demonstrate an impressive amount of strength and resilience. I am often reminded of a comment made by our friend Michael Hendrickson, “Oh, Jesse, please fight and win over the demon cancer.” Michael’s comment plays on repeat in my mind. I am grateful for my son’s strength because he gives me strength. This journey is hard.

• It finally feels like fall! The hot weather is hard on most of us, but it’s especially hard on Jesse. He’s been able to take some walks with us in the evenings. I love the mums, pumpkins, and Halloween.

• Our oldest son, Jacob, sent us a Ring camera video of a young moose visiting their front yard in Alaska. It was astonishing! The cow and her mother came by to enjoy the plants in their yard. They also saw a bear rummaging through the trash at the end of their street a few days before. They have an amazing life there.

• Brian’s employer continues to amaze us with his generosity. He and his family have been supportive and understanding of Jesse’s treatment and have allowed Brian the opportunity to attend appointments as needed. I was unable to continue to work due to the frequency and intensity of Jesse’s treatments. We are extremely grateful for Brian’s job, and for the people he works for and with.

• The rest of the family continues to enjoy good health. We don’t take this for granted.

• A friend of mine, Laura Nelson, has put together a blood drive in honor of Jesse in The Colony on Wednesday, October 29. Please consider donating, if you can. There is a nationwide shortage of blood products. Jesse will need blood each week during November and December, and he is O negative. Blood donation saves lives. Thank you, Laura, and to all of you who plan to donate!

I apologize for the length of this update. Unfortunately, this happens when life gets busy and lots of things happen. I will try to post an update after our visit with Dr. I. We are very anxious about this visit.

Thank you for those of you who’ve been following along with our journey. I am grateful for your calls, texts, and messages.

Jennifer

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”

―Lord Byron

Since that time, he has remained healthy. He required blood transfusions during his last hospital stay, and he needed one last week. This week, his labs revealed that he is producing blood again! Better still, we met with his oncologist last week, and he is in complete (deep) remission. If you’ve been following his journey these last few months, you will remember that Jesse was in remission after course 1 in June. Jesse’s journey to cure for his leukemia is a three-stage process: Remission, deep remission, and cure.

Jesse achieved remission after the first course of treatment, which was great news. It did not, however, mean that treatment stopped there. The treatment for leukemia is long and dangerous. In years past, a patient would achieve remission and treatment would stop. Oncologists would hope that the cancer would never come back, but there was little to be done beyond achieving remission. Patients and their care teams would just hope for the best. New treatments were studied for years, with protocols developed according to the genetic makeup of the cancer. For Jesse, the good news we received early on was that the cancer he had was of the genotype that is curable. On its face, this would be cause for relief, which it was. The reality was more complicated.

Prior to these newer treatments, leukemia would eventually come back some time later in patients who had achieved remission, and it would come back with a vengeance. It would be found in the brain and spinal column, or in other areas of the body. When it came back, it would often be resistant to chemo, and it would be much harder to treat. I cannot speak for the experiences of others who battle cancer now. I can only speak to my understanding of my son’s experiences, and to the research that I have read about his cancer. In order to fully cure Jesse, and to assure that the leukemia he was diagnosed with does not come back, the treatment requires that he take strong chemotherapy medicines for years. If the cancer comes back at any time during this period of treatment, he would need to have a bone marrow transplant (BMT). Thankfully, he still does not need that. BMT is dangerous, and leaves lasting effects on the body. If Jesse can avoid one, it would be terrific.

Another bit of good news is that his oncologist has a good plan in place for course 4, when he will likely be anemic again. She has worked out a treatment plan that Jesse will pioneer so that other patients like him will not need to go to the ER every time that they are severely anemic. We are hopeful that this plan will help him to avoid the risks that come with frequent trips to the ER when he is also immunocompromised.

The events of the last few weeks have reminded me of a book I used to read to my Kindergarten students. It was called A Good Day by Kevin Henkes. In the beginning of the book, the characters all have unfortunate things happen to them: A little bird loses its favorite feather, a little dog gets wrapped up in it leash, etc. In the second half of the book, all of those things turn out to be opportunities for something good to arise. In the end, a little girl finds the bird’s yellow feather and she declares that the day was good.

As you’ll recall, our daughter had a wreck that totaled her car. I gave her my Lexus and I got a brand new Subaru Outback. Jesse got his car back, and he was able to spend time with a good friend on Saturday. Lately, it’s been busy with doctors’ appointments. The flip side of that is that Jesse and I finished the audiobook we were listening to, and we started a new one. We have gotten to spend good time together, and we’ve enjoyed making those trips to Dallas in my new car. He’s looking forward to seeing his friends this weekend. I am happy that he feels strong enough to get out and enjoy life again.

I know that for so many of us—myself included—things have been heavy. There are good reasons to feel down and discouraged. Please remember that there are always reasons to feel encouraged, too. We are meant for connection to one another. Make it a point to get out and see your people. Take time to sit in the sun, to smell the roses, and to snuggle babies when you can. Make art. Listen to music. Sing.

There are forces that seek to divide us. We are so much better when we are united.

Jennifer

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”

―Lord Byron

Jesse just finished course 2 of the five courses of the AALL1231 protocol for Acute Lymphoblastic Leukemia (ALL). If you’ve been following along with his journey, you’ll recall that this course was 56 days long. He had an unexpected hospital stay in July for myocarditis which delayed his treatment for a week, so this course took longer than 56 days to get through. For the last two weeks, I would look at Jesse when we returned home from the hospital or clinic and I’d say, “Well, we survived another day.” He would nod in agreement, and we would go inside to eat supper or lay down in our respective rooms to rest. It has been exhausting.

To sum up the last three weeks: Jesse’s treatment has shut down his body’s production of blood cells. He has been severely anemic for over a month. He has received several units of blood each week, just enough to keep him alive. Even with transfusions, he has had roughly half the blood volume—or less—needed to be healthy and thriving. The last two weeks of the protocol in course 2 required that Jesse receive infusions of two extremely harsh chemotherapy drugs: Vincristine and Pegaspargase. He’s received these before, but he was stronger when he did so. The last dose of Vincristine that he received last week has taken a toll on him physically. The side effects range from neuropathy, gastrointestinal effects, hair loss, fatigue, nausea, and mouth sores. He feels terrible right now.

He is getting a bit of a break from chemo this week. He had labs, a PET scan, platelets infusion, and a bone marrow biopsy on Tuesday (two days ago). Because his platelets are low, he was having trouble clotting, so he had to receive a platelets infusion before he could have the biopsy. During the biopsy, the nurse practitioner went in to remove a core sample of his bone marrow. The first two times she went in, he clotted too quickly—I guess the platelets transfusion worked too well—and so she had to remove a third core. He’s never had to endure two failed attempts before, so part of the reason he has been miserable is because he hurts. This is further complicated by two things: Jesse has an intolerance to pain meds and Jesse’s liver is under a lot of stress.

We discovered that Jesse is intolerant to many pain meds during his first emergency hospital stay when the cancer was discovered. He had a large tumor in his thymus gland and his left lung was full of fluid. In the process of diagnosis and emergency care for Jesse in those first 12 hours, Jesse had to have a procedure called thoracentesis to remove the fluid from his lung. He was having difficulty breathing, and would have likely drowned if the fluid wasn’t drained. The technician gave him lidocaine to numb the skin, but he had to have twilight sedation for the needle puncture to his lung and the subsequent aspiration. This was sufficient for the procedure. My memory is hazy of that first day, but I vaguely remember that he had to have a biopsy of the tumor, and I think that this was done at the same time as the thoracentesis. I’m not absolutely sure. After such invasive procedures, Jesse was given pain meds to support him afterwards. Nothing worked, so Jesse was in intense pain when the anesthesia wore off. They tried morphine, but it didn’t do anything for him. It was a terrible night for him, and he suffered badly.

Without going into too much detail, having different types of invasive procedures with little pain relief over the last five months has left Jesse was a bad case of medical anxiety. We discussed this with Dr. Irizarry when we moved over to her practice. She assured us that she would give Jesse sufficient supportive meds, such as anti-anxiety medication and pain relievers that would work for him.

This has been complicated by the fact that the chemo drugs prescribed for him have put significant stress on his liver. His liver enzymes are very high, a condition Dr. I refers to as “ALL liver.” While this was expected, his liver can’t tolerate more stress from many of the pain meds out there, as they are hard on the liver. Unfortunately, the drugs that he can use provide almost no relief. Tylenol doesn’t work at all for him, and it’s the pain reliever that is safest for the liver. After having his back drilled into three times on Tuesday, he’s having to grit his teeth through the pain today. He has mostly stayed in bed since we got home late Tuesday night.

The good news after so many rough days is that he has survived. His PET scan is clear, though it did reveal that his bone density is reduced due to chemo. When he is well, he will be able to improve his bone density with weight lifting. We won’t receive the results of the bone marrow biopsy for a few weeks. The hope is that his bone marrow is clear of cancer.

Our family is showing signs of the stress. Jesse and I both broke down at different times last week. Brian has said that he is manifesting stress in different ways, as well. I am not sleeping well. I learned from my counselor about hypervigilance this morning. Hypervigilance is a heightened feeling of anxiety that happens, even when there is no danger present. I feel a sense of extreme fear frequently throughout the day, and often at night that something terrible is going to happen to Jesse or one of the other members of our family. I fight the urge to go into Jesse’s bedroom in the middle of the night to see if he’s breathing. I feel anxiety about his health and worry about whether he’s experiencing side effects from chemo or if he is actively dying. Cognitively, I understand why I am feeling this way. I need to calm down so that I can sleep.

My counselor suggested that I visualize anxiety as a thing; to anthropomorphize it. She suggested that I speak to this representation of anxiety and to tell it that I don’t need it right now, and to let me sleep. I am going to try this when I wake up in the middle of the night. She also mentioned in our session that “Cancer colors everything,” and that it affects the way that we think about things and the way that we make decisions. She said that it is common for caregivers to have pervasive thoughts about cancer during intense times. She affirmed that the way I am feeling right now is to be expected in light of all we are going through. For me, I think that the near constant turmoil has been so hard.

Having said all of this, there have been rainbows in our storm clouds:

• My dear friend, Nichole, drove out to see us on Friday, August 22. This was the day after my birthday, and a welcome surprise. She said she needed to “lay eyes on me” and to make sure we are ok. I appreciated her visit, especially since she drove a long way out to see us.

• I got to see some of my good friends on Saturday. We met for brunch, which was lovely.

• I turned 55 on August 21. I received lots of nice messages.

• Our oldest son, Jacob, just turned 30 on September 1. We got to talk with him, our daughter-in-law, and our grandson on that day.

It is no small thing to say that Jesse has survived two intense rounds of treatment. He has a lighter round of treatment (course 3, 60 days) and one last intense treatment (course 4, 45 days). Course 5 is the maintenance phase of treatment and will involve daily chemo pills and monthly chemo infusions for 3 years. The important thing now is to allow Jesse to recover from the last few weeks. This will be my focus for the next two months.

Another difficult thing happened on August 25. Our daughter, Lily, had a car accident that morning that totaled her car. Thankfully, Lily is ok. She was sore for a few days, but we are grateful that she did not sustain any major injuries. We found out yesterday that the other party in the accident has claimed injury and has engaged an attorney. We are in a difficult season, and this has added to that.

Thank you for your continued support and encouragement. It means a lot to us that we have so many people who care about us and who are cheering Jesse on from a distance. Despite the challenges we are going through, we know that we are loved by many.

Jennifer

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”

―Lord Byron

A couple of days ago, I dreamt that I was carrying a bear cub close to my chest. I had removed my shirt in an effort to bond with it in an approximation of the skin-to-skin bonding technique that we did with our infants when they were born. Brian and I were taking the cub to visit friends, and each time I would hand the baby bear over to someone, I would become aware of my nakedness and immediately cover myself with my arms. This went on a few times as we made the rounds from friend to friend. We decided it was time to return home to sleep, as we planned to return the bear cub to the forest in the morning so that its mother would find it. Just as we were reaching to edge of the mining town (I don’t know where that came from!) where we lived, I saw a big, silver bear in the distance. She saw that I was holding the cub and began to charge at me. I was terrified, and I set the cub down and ran away as fast as I could. We ran for shelter from the angry mama bear, and as I looked back, she beheaded a young woman who was in her path. I woke up in fear and terror.

Since I’ve had a couple of days to reflect on this dream, I think it is clear that the bear cub represented Jesse. Telling the story of his leukemia experience is very much like taking him around to see friends and to allow them to hold him close to their hearts. I am with him so often, and we share so much with one another, that we are both quite vulnerable. He is weakened by this fight against the disease, and I think the silver bear represented my protective nature, angry at both the cancer and the toll it takes on him, and myself for sharing the journey publicly and exposing him to the world and its judgment.

This doesn’t mean that I will cease to write updates on Substack. It is an acknowledgment that all of this is much harder than I realized it would be. I had ambitions of posting once per week to keep family, friends, and colleagues updated. I will confess that Jesse’s cancer treatment has taken a toll on all of us, and I have struggled to write. The dream has helped me to see why it’s been so hard, and why I often feel depleted after writing: I am at war with myself.

All of this to say that I am doing my best. I know that so many of you care about our family and want to know how things are going. I will continue to update as I have the energy to do so. I worry sometimes that I come off as negative in these updates, and I really don’t want to. Yes, this is very hard. There are also times of joy. Sometimes the reason I don’t write is just because of the practical tasks that have to be accomplished. I spend quite a bit of time cleaning and sanitizing our home.

Updates:

Jesse is on day 32 of Course 2 of his treatment (Course 2 is 56 days). We had a setback, so he is a week behind the original schedule. Brian and our older son, Matthew, tested positive for Covid on July 26. If you’ve been keeping up with my updates, you will remember that Jesse left the hospital for myocarditis on July 23, so this was a very scary time for us. Jesse’s immune system has been depleted, and he was at his lowest during the week following his hospital stay due to the chemotherapy drugs he received during that time. Despite our best efforts to sequester Brian and Matthew during their Covid infection, Jesse tested positive for Covid on July 31. Because the cancer clinic is full of immunocompromised people, we had to follow strict isolation protocols while we were in the building. The doctor felt that it would be best to pause chemotherapy while Jesse was ill, and she prescribed infusions of the anti-viral drug Remdesivir to combat the Covid infection and prevent Jesse from developing Covid pneumonia. She told us that she had lost a patient to Covid pneumonia, so she did not want to take any chances. Unfortunately, this meant that Jesse had to return for infusions for the next three days, and we had to follow isolation protocols during that time.

While Remdesivir helped to shorten Jesse’s Covid infection, it came with severe GI side effects. Jesse was exhausted and his immune system was depleted. It was a rough week, in what has seemed like months of rough weeks. I also contracted a mild case of Covid, but for me it was just three days of body aches. Frankly, I really don’t have time to get sick, and our family can’t afford for me to be unavailable to take Jesse to treatments. I think it is sheer force of will and my love for my family that keeps me going.

Jesse received a Cytoxin infusion and an infusion of the steroid Dexamethasone on Wednesday, and is doing Cytarabine shots at home during the week. He also takes Mercaptopurine tablets during the weekdays, and a strong antibiotic called Bactrim on the weekends. He is weakened and is experiencing a lot of body aches. We are careful about our exposure to the general public, especially after we all had Covid. We look forward to the day when we can freely go out into the world without having to be so careful.

My rainbows this week:

• Despite how it may seem, it has been a better week. Jesse has been more alert and active this week, in spite of his weakness and fatigue.

• We have been listening to my favorite book, The Stand, for the last few weeks on our journeys to the hospital. Jesse is enjoying it. If you’re familiar with the plot, then you’ll know that it was a little tough to listen to during our Covid infections, but we persisted.

• We all recovered from Covid. Brian and I are not so young anymore. He had a tough time with it. Of course, any type of infection is serious for Jesse, so I don’t take it lightly when he recovers.

• Lily is doing well in her new job, and she is looking forward to moving into her new apartment and the new semester at TWU.

• Our oldest son, Jacob, and our daughter-in-law, Gaby, and our grandson, James, are doing well. They have been fishing and enjoying the general splendor of Alaska. Gaby’s mother, stepfather, and younger brother were able to visit them recently. Since we can’t go visit, I’m glad that they were able to see them.

• Brian’s birthday is tomorrow. He will be 58. We will celebrate this weekend by watching his favorite movies and eating good food. I am making chicken and dumplings for supper tonight, and tomorrow I’ll be making cinnamon rolls for breakfast and carne guisada for lunch.

Thank you for hanging in there with us. I appreciate hearing from those of you who care and are invested in our son’s treatment. I may not always be able to send a long response, but I hope that you know that your messages are received and that I am grateful for you.

Jennifer

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”

―Lord Byron

Jesse received the three strongest chemotherapy drugs of this cycle on Monday and Tuesday of last week, 7/14-7/15. He received Vincristine, Pegaspargase, and Methotrexate. All three have serious side effects that do not outweigh the benefits that they provide in fighting leukemia (in Jesse’s case, he is fighting future leukemia). Last Thursday, he started feeling really bad. He was feeling so bad, in fact, that he didn’t want to take his anti-nausea drugs. He said that he was already tired and that the Compazine he takes would just make it worse. So, he was sick for several days. He also felt extreme fatigue, congestion, and lightheadedness. Unbeknownst to me or anyone else, he was also experiencing sharp chest pains.

Jesse suffered all weekend with nausea and vomiting and fatigue. When I took him in to the cancer center for his regular lab work and chemo on Monday (two days ago), his provider was concerned that he was anemic and was having trouble breathing. She ordered cardiac enzyme tests to see if Jesse was having a problem with his heart. She also ordered a blood transfusion and decided to have Jesse hold off on chemo to give him some time to feel better. Jesse seemed to be relieved, though I knew that this would be disappointing for him later when his chemo schedule would be extended because of the delay.

I confess that we should’ve waited around at the hospital for the lab results. We decided to get some lunch nearby, and when we didn’t hear anything, we headed home. When we were about 45 minutes from the hospital, Jesse’s nurse called with the news that his troponin level (cardiac enzyme) was very high. It turns out that it was twice the normal amount. We hurried back to the UTSW emergency room, where they ran a bunch of tests to try to figure out what was going on with Jesse’s heart.

When troponin is high, it signifies that the heart muscle has been or is currently in distress. It can signify that the patient is in cardiac arrest, or that there is a blood clot, or that the heart muscle is inflamed. The ER and oncology teams agreed that Jesse needed to be admitted to the hospital. One theory was that the anemia was causing his heart to work extremely hard to pump the small amount of red blood cells to his body. This meant that we couldn’t wait another day for a blood transfusion; he needed one right then. They were also concerned that he may have an infection of some kind, so he was tested for a lot of different things. He didn’t have flu, strep, or Covid.

Another theory was that his heart was under distress because he was dehydrated and hadn’t eaten much in several days. He was given fluids to counteract this. After Jesse received blood and fluids, he felt much better. He also received blood thinner in case he was clotting due to the Pegaspargase. This is one of the dangers of that particular drug. Jesse was admitted to the hospital on Monday evening, and after extensive testing, the cardio-oncology team, along with his oncology team, determined that Jesse probably had myocarditis. They believe that Jesse contracted some type of virus that caused inflammation of the heart, but that it was resolving. His troponin levels had dropped significantly. Jesse felt better and he was eating and drinking well.

The decision was made to go ahead with chemo yesterday, so he received Vincristine via IV infusion and Methotrexate via lumbar puncture. He will follow up with his doctor tomorrow, and he’ll have to have an MRI of his heart soon to make sure that everything is fine. He has already had an echocardiogram and CT scan and so far, there has been no sign of lasting damage to his heart. This is good news.

Jesse was released from the hospital yesterday evening. We came straight home. We were both glad to be back with the family, and I was extremely happy to be able to take a shower and sleep in my own bed. Hospitals are no place for rest.

Because life continues to roll along (even when the marathoner has to pause) we also had to have our old cat, Pascal, put down yesterday. Brian found an abscess on his back late last week. I’d looked at it and decided I would call the vet on Monday to see about getting him examined. Of course, with everything that happened on Monday, I couldn’t do anything for the cat. Lily came home from university to spend the week with us. She saw the state of the cat and took him to see the vet herself yesterday. After our vet looked him over, she and Lily decided that the most humane thing to do was put him down. Brian and Lily went together to see Pascal one last time. They were able to love on him for a bit. It was a sad day.

To say that I am tired would be an understatement. I am resolved, though. I’ll pause for a bit at some point today, because tomorrow we will be back at the hospital to continue the marathon…

Jennifer

My rainbows this week:

• The wonderful doctors, nurses, and staff at UT Southwestern. They took great care of Jesse.

• Jesse is still running the race. How many near misses is this?

• Lily is home for the week. She has been a great help to us, and I’m happy she’s here.

• Our son, Matthew, found out that his divorce is final. He is free to pursue his next chapter, unencumbered.

• I’m really grateful for the resources we have. I am glad to have a reliable car that gets us to the places we need to go. I’m grateful for our home.

• I’m grateful for our family and friends. We have each other, and we have people who care about us.

• Ozzy Osbourne died yesterday. This wasn’t exactly a rainbow for us, but I am grateful for his music. Jesse and I listened to Ozzy on the way home last night.

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”

―Lord Byron

What mitigated our good news was the news that Jesse will be in intensive treatment for the next 5-6 months, and then maintenance for 5 years after that. Treatment for Acute Lymphoblastic Leukemia (ALL) involves 5 courses of treatment:

Course 1–induction (30 days inpatient)

Course 2–consolidation (56 days outpatient)

Course 3-interim maintenance (60 days outpatient)

Course 4-delayed intensification (45 days outpatient)

Course 5-maintenance 5 years (once per month chemotherapy)

Jesse completed course 1 in May. He began course 2 on July 1. He will complete this course of treatment in early September, provided everything goes well. As I’ve said previously, we are learning to sit with uncertainty and to be flexible about all of this.

In between his treatments, he has to have lab work done to monitor how his body is responding to the medications that he is receiving and to make adjustments to his care. For example, Thursday’s labs showed that his potassium was low, so he was prescribed potassium chloride for 7 days to bring it back up. The doctor also discussed dietary sources of potassium, and the care that we will need to take with fruits and vegetables as Jesse’s neutrophils decline during treatment. As his immune system becomes more and more compromised, we’ll have to take special precautions to remove pesticides and bacteria from the fresh foods that we purchase in the grocery stores, and we’ll have to be extra cautious about where we go and what he is exposed to. Large crowds will be out of the question.

So far, his immune system is still strong, but there are signs that this is starting to change in his lab work. There was a big difference in his levels from the week before. His liver enzymes were very high, which is characteristic of ALL patients in this phase of treatment. It does not mean that we can let up on vigilance now that he’s in remission. Unfortunately, it means that we have to shift our thinking from “Jesse requires acute care” to “Jesse requires chronic/long-term care,” a shift that my counselor explained to me in our session today.

It is a very weird place to be to say that the two things are true at the same time: Jesse is in remission and Jesse is receiving life-saving care. Dr. Irizarry was careful to remind us that he could relapse, which would mean that he will need a transplant. She said that she is not expecting him to. I know that she wants us to mitigate our expectations, and to be prepared in case things change abruptly.

All of this to say that we saw just how challenging the next few months are going to be on Tuesday. The storms that flooded the Hill Country continue to roll through Texas. One was building as Jesse and I sat in the radiology department on Tuesday afternoon. Jesse had received his chemo injection in the morning at the cancer clinic, then we went over to the main UTSW campus for his intrathecal injection of methotrexate. About an hour before his scheduled injection, he started feeling nauseous. About 30 minutes before, he started vomiting. Of course, the concern at that point was that the PA wouldn’t be able to administer the lumbar puncture while Jesse was vomiting. He was given Zofran for the nausea, but it only helped a little. They managed to get through the administration of the chemo, but he continued to vomit for the next few hours, and we had to drive the hour and a half back to our home. His anti-nausea meds were at our house, so we had no choice but to get on the road and make the long trek back in the storm.

In all honesty, that was a hard drive. I doubted my own ability to navigate Dallas traffic in the blinding rain. Cars and trucks were bumper-to-bumper, and Jesse sat next to me trying desperately to hold it together while he battled waves of nausea and vomiting. It was very much like the quote, “If you’re going through hell, keep going.” I was struggling to keep from crying and breaking down myself. I talked myself through it by telling myself that I am strong and that I can get us home. So I did.

On the way home, the storms finally broke about 25 minutes from our house. There was the widest rainbow I’ve ever seen in the sky, just at the point where we were entering Fate, Texas. It gave me hope in that moment that we were going to be ok. Once we got in the door of our home, Brian took over. I’m forever grateful for my husband, and he continues to amaze me at how he just seems to anticipate when we need him. He took care of Jesse, and I got the anti-nausea medicine. The medicine did its thing, and Jesse got relief.

I was able to talk about all of these things with my counselor this morning. I appreciate her so much. She gave me many things to consider today about the situation we find ourselves in. She compared this journey with Jesse’s treatment to a rollercoaster ride. This comparison seemed very apt when I think about the twists and turns we’ve had in such a short time.

The rainbows in my storm clouds this week:

• The literal rainbow we saw on our way home on Tuesday. I am often looking for glimmers in each day when things are tough. I felt such relief to see it because it meant the storm was over for the day.

• Making it home safely. Many have not been so lucky in other parts of the country.

• Jesse is feeling better. The medicine worked, and he had a much better day yesterday.

• Our daughter, Lily, had a successful road trip with her friends last week. She called us Sunday night to tell us all about it.

• Matthew had a follow-up visit with his doctor yesterday. In his words, he is “the healthiest person you have ever seen.” He cracks me up.

• I’m thankful that Brian and I have each other. I don’t know how we’d get through this without one another. He’s such a good husband and father. I’m really grateful for him.

I would be remiss if I didn’t acknowledge that the flooding in the Hill Country has brought a deep sadness and heaviness to Texans all over the state. It is at times like this that battles of all types are especially hard. I mourn with the families experiencing loss, and I hope for recovery for those who haven’t yet been found. Now, more than ever, it is important to be the rainbow in someone else’s storm. We can be hope for those who need it.

Take care,

Jennifer

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”

―Lord Byron

Today begins the start of Jesse’s next course of treatment. He will receive his first infusion this afternoon, followed by another infusion and x-ray tomorrow. I have to remember to bring the cold packs that our lovely neighbor, Tracey, gave us to help with Jesse’s neuropathy. The cold packs will go on his hands and feet while he receives chemotherapy and are meant to mitigate the negative effects on the nerves in those areas. This next course lasts 56 days. Jesse will receive intensive chemotherapy drugs these first 3 weeks, so we are preparing for him to feel badly. Thankfully, many of the drugs he will take in this course can be administered at home. He’ll have to do intramuscular shots and pills at home, but labs and chemo infusions are done in the hospital. His new doctor is trying to limit the amount of time that we travel into the hospital since it is about 50 miles away.

I had my first caregiver counseling appointment today. We mostly spent time getting to know one another. I am happy to have this resource with UT Southwestern, which we didn’t have before. My counselor said something that stuck with me: “Your energy goes where it’s needed.” We were talking about how depleted I’m feeling, and she affirmed that we’ve had a lot going on for these last 3 months. She was explaining that we use our energy in the ways that we need to, but that I should also be mindful to reserve some energy for my own care. She encouraged me to eat well, stay hydrated, exercise, spend time with friends and family, and sleep well. She wasn’t saying that in a rude, self-important way. She said I should try in some small way to move the needle just a bit more towards those things as best I can. With all of the things happening in our lives, developing a regular schedule has been challenging. I will do my best.

The rainbows in the storm this past week:

• Matthew is better. He follows up with our excellent doctor today.

• Jesse’s best friends came over yesterday to hang out. Jesse and Matthew made fajitas and the guys played games in the pool. Listening to my sons laugh gives me so much joy.

• The company my husband works for held a company appreciation picnic on Saturday. This is always a very nice time, and it was great to see Brian’s employer and his family and all of his co-workers and their families. The company has been a huge blessing to us.

We are meeting with Jesse’s doctor on Thursday to review the test results that she’s ordered over the last three weeks. I’m anxious to know how Dr. Irizarry feels that Jesse is doing, and what she has to say about this next phase of treatment. I’m really hopeful that his Minimal Residual Disease (MRD) test shows no residual cancer cells. This would be wonderful news, because a negative MRD test means that Jesse will most likely not have to have a bone marrow transplant.

There are two reasons he will need a transplant: He has a high risk disease and he is MRD positive. Dr. Irizarry’s initial assessment when we first met with her was that he doesn’t have a high risk disease, but she couldn’t tell us definitively without studying his case, especially the genetic sequence of his leukemia. We may not have the MRD results on Thursday, so I am going to try and limit my expectations. It is hard not to want desperately for Jesse to avoid the transplant.

I will update everyone after we meet with Dr. Irizarry. I plan to use the notes feature on the Substack app occasionally to post updates as I remember to do so. I continue to appreciate the comments and messages we’ve received. I’ve had a few people reach out who’ve battled this same cancer that Jesse has, and I have to tell you that the stories of people who’ve battled leukemia and won give me life. Please keep them coming.

Jennifer

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.”

―Lord Byron

We’ve learned through Jesse’s treatment that the after-effects of chemo are extremely difficult to manage. I was feeling that the treatment plan he had at his previous oncologist’s office focused on the body and nothing else. They managed his cancer, which is good, but they weren’t considering his quality of life. Often, his anxiety was dismissed. I can’t be too critical of the oncologist; after all, he saved Jesse’s life. I simply felt that there had to be better care for my son, and so I pursued that.

Dr. Irizarry took over an hour and a half with us. She explained that the current treatment protocol, CALGB (Cancer and Leukemia Group B)1043, that his oncologist was using was one of her favorite ones and that she uses it often. However, research has shown that there are two other protocols, AALL0434 and AALL1231, which work much better for the specific type of leukemia that Jesse has, T-cell Acute Lymphoblastic Leukemia (ALL). 0434 works best for ALL with bone marrow disease, and 1231 works best for ALL with thymus involvement.

Jesse’s tumor was in his thymus, so Dr. Irizarry plans to begin the AALL1231 treatment protocol for him next week. This is dependent on when she can schedule him for a CT scan and bone marrow biopsy. She is very cautious, which I like very much. She wants to review the genetic sequencing that was done on his tumor at the beginning of treatment, also. As Dr. Irizarry explained it, it is not a foregone conclusion that Jesse will need a stem cell transplant. The protocols for treatment in the AYA population are based on pediatric regimens. Children don’t do as well with stem cell transplants, so the newer treatment protocols have been found to be effective in eradicating the cancer without the need for transplant. For Jesse, this could mean that he won’t need a transplant, either. This is great news, since the transplant is very dangerous.

We have learned through this process to be flexible and comfortable with uncertainty. This is not easy, especially when I am anxious. The discomfort I felt prior to our visit with Dr. Irizarry weighed heavily on me. I couldn’t eat, and I felt extremely nervous. Dr. Irizarry and her staff put us at ease. The hospital was beautiful and easy to navigate. It was so different from the oncology department at Medical City of Dallas. While we know that the next phase of treatment will be difficult, we feel much better knowing that Dr. Irizarry is guiding us through it. She is extremely straightforward, which I appreciate. In my previous place of employment, we used to say, “Clear is kind.” This is absolutely true in cancer treatment.

Another reason for the relief I felt with Dr. Irizarry is that she is offering Jesse a lot of other support. He’ll be receiving exercise therapy with physical therapists to help with his neuropathy; he’ll receive counseling (so will we); he’ll receive access to a therapy dog; he has information on a young adults with cancer support group; and he’ll have a social worker to help us with the financial toll of treatment. All of this, and the treatment team he now has access to! He will have a team of pharmacists, radiologic oncologists, nurses, and more. Jesse still has a difficult road ahead of him, but there will be support along the way—for all of us.

At the end of our visit yesterday, we walked into the clinic where Jesse would have his labs drawn. In the waiting area, Brian saw a friend he has known in the construction industry for many years. He was waiting for his wife, Andrea. Andrea has survived Acute Myeloid Leukemia. She went through diagnosis and treatment during the summer and fall of 2020, when Covid restrictions were in effect. Jesse and I had the opportunity to chat with her and she prayed over us in the waiting area. She offered encouragement to Jesse, which meant so much to us.

The rainbows in my storm clouds these last couple of weeks:

• Meeting Dr. Irizarry, and her willingness to take on Jesse’s treatment and care.

• Meeting Andrea. It is always encouraging to me to meet people who’ve survived acute leukemia.

• Seeing the beautiful, light-filled spaces at UTSW.

• Our daughter, Lily, came home on Saturday and Sunday to visit. We grilled out and she and I stayed up late on Saturday talking on the back porch.

• Talking with our oldest son, Jacob, and our daughter-in-law, Gaby, on Sunday. They are doing well in Alaska, which is good to know.

• My niece, Kelsey, gave birth to a healthy baby girl this weekend. Her name is Karoline Kay. I can’t wait to meet her!

• Swimming with Brian and the boys in our backyard pool. I’ve been working to overcome my fear of water. My goal is to swim the length of the pool underwater. I swam almost halfway on Saturday!

• Hearing Jesse and his brother laugh together.

• Hearing from friends and family in text messages. This can be a very isolating experience. It is good to have friends and family reach out.

Thank you to those of you who commented on and liked my last post. I appreciate the continued thoughts and prayers that come our way. I know that so many are struggling, and it is kind of you to think of us during our difficulties.

Gratefully,

Jennifer

Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray. Lord Byron

For those who have just learned about my son’s cancer, I will bring you up to date: Our youngest son, Jesse, wasn’t feeling well for several months. He was fatigued and his heart rate had been climbing higher, even at rest. He was finding it hard to breathe in March. On March 20, my husband, Brian, recommended to Jesse that he go to the local urgent care center to see if maybe he had bronchitis or pneumonia, because his chest hurt terribly. The staff there took an x-ray of Jesse’s chest and told him to go to the ER immediately because his left lung was full of fluid. Conveniently, they gave him a piece of paper with a QR code to show the intake person at the ER. Jesse called Brian and me, and I told him to go to the ER at Medical City of McKinney, which was only about 10 minutes from me.

I should’ve known from the way that the ER staff responded to Jesse that something was wrong. The admitting nurse scanned the QR code and immediately processed his admission, gave him an id bracelet, and ushered us back to triage. Within a few minutes, they x-rayed his chest again and took LOTS of blood. It seemed like no time at all and a young doctor was kneeling before Jesse telling him that he suspected that Jesse had lymphoma and that they were doing testing to confirm this. Jesse became upset, naturally. I was in shock. I remember thinking that the doctor was being alarmist. In my mind, there was no way that Jesse had cancer. He was a healthy 22-year-old. He had just come in for bronchitis!

Over the course of the next two days, Jesse had a CT scan, PET scan, multiple labs, thoracentesis to drain the 1.5 liters of fluid from his lung, and a biopsy of the 10.4 cm tumor that the x-ray revealed in the mediastinal area of Jesse’s chest. We learned that the tumor was causing the fluid buildup in Jesse’s lung. The doctor assured us that the tumor could be treated easily with meds, but that tumors like this tended to respond so well that the resulting cell death could overwhelm the kidneys. This is a deadly situation called Tumor Lysis Syndrome. The doctor told us that this type of treatment would be provided by an oncologist, and that the doctor would be coming by to chat with us.

I’ll fill in the details in another post, but for now, I’ll summarize the time between March 20 and today by saying that within a week of that first ER visit, Jesse was admitted to the ER two more times. He had fluid drained from his lung once more, experienced Tumor Lysis Syndrome, ended up in the ICU in Medical City of Dallas, had emergency dialysis, and spent a month in the hospital for treatment for what we came to understand was T-cell Acute Lymphoblastic Leukemia, or ALL.

ALL is treated by a well-researched protocol involving chemotherapy drugs that culminates in stem cell transplant for the lucky people who are healthy enough to receive one, and who have a stem cell donor match. We learned—to our tremendous relief—that Jesse’s cancer is of the phenotype that is curable, so his leukemia diagnosis was not a death sentence. I’ll admit that I didn’t totally understand the implications of the treatment and the long road ahead, but I give myself some grace in that I could really only handle a little at a time. It’s been a pretty stressful two months.

There have been high points and low points. You learn who your friends are when bad things happen to your family. Jesse’s cancer has caused all of us to evaluate what’s really important in life. I felt like we already knew this, but when the doctor said lymphoma, there was only my one single thought: My son has to live.

So, here we are: June 1, 2025. We found out two weeks ago that Jesse’s bone marrow and cerebrospinal fluid are clear of cancer. There are no signs of the abnormal leukocytes that are the hallmark of leukemia. However, that pesky tumor is not completely gone, so Jesse is not yet in remission. The tumor was originally baseball-sized; now it is the size of two grapes. As part of the treatment protocol, Jesse has to receive a two-week regimen of the strong chemotherapy drugs that he received when he went into the hospital for intensive treatment in April. On Tuesday, May 27 he had a chemo cocktail of Daunorubicin (the “red devil”) and Vincristine. On Friday, May 30, he received an infusion of a drug called Pegaspargase. He also takes a bunch of meds to support him as the tumor dissolves and to prevent him from having some of the nastier side effects that come with chemotherapy.

Finding out that Jesse still had the tumor was a blow to all of us. That was a hard day. This additional two-week course of treatment delays the next phase of treatment by at least a month. Jesse struggles the most with the delays, because it means it’s going to be that much longer before things are back to normal. He has neuropathy in his fingers, which is painful and uncomfortable. Since rock climbing is his hobby, this is worrying to him. We are hopeful that this will resolve when he is done with chemo. Naturally, the longer he endures chemo, the more concerning that is for long-term damage.

For myself, I learned quickly that working in a stressful job is incompatible with being a supportive caregiver for my son. I tried working part-time on intermittent Family Medical Leave. This was impossible. For one thing, my role as the program director of an early intervention program serving five counties was not part-time. It was a more-than-full-time role. I couldn’t be available in the way I needed to for my staff, my superiors, or the state, and still be available to Jesse and the rest of the family. It was taking a toll on me physically and mentally. I can always find another job, but I will only ever have one Jesse. He deserves all that I can give him.

I resigned my position as program director at the end of April. I gave the organization over a month to find another candidate. The search continues. My last day was Friday, May 30. The management team threw me a going away party, which was lovely. I’ve made some good friends while I worked for this organization. I will miss seeing them every week.

Jesse and I will be back at Medical City Dallas next week for another infusion of Vincristine. I have learned at this point that he will start to feel better the day before he goes in for chemo, and then he will feel terrible for two to three days afterwards. I hate to see him suffer—we all do. He’s such a good guy, and he has managed to keep his sense of humor. This round of chemo has been hard on him, and I worry a bit for the next phase, a 50-day regimen that will require chemo infusions several days in a row for weeks at a time. He will need stamina to endure this. So will I, because I am his chemo buddy. I would gladly endure this for him if I could. Instead, I’ll be there with him along the journey.

Thank you to all of you who have supported us through this journey so far. There have been so many who have extended kindness to us, and it is appreciated. A kind word goes a long way to combat discouragement.

Jennifer

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