A New Direction

We are making a change in Jesse's care

Yesterday, my husband, Brian, and I took Jesse down to UT Southwestern Hospital in Dallas for a consult with a hematologist/oncologist who specializes in acute leukemia in adolescents & young adults (AYA) named Dr. Vivian Irizarry-Gatell. We had become increasingly frustrated by the disorganization and lack of communication in the oncology office we were going to. Just over two weeks ago, I did some research on leukemia experts in the D/FW area and found that the cancer center at UTSW was the home of several of them. Dr. Irizarry stood out to me because of her primary research interests, and because she has focused on survivorship care. This is something I had never heard of before, and as she explained in videos on her website, survivorship care is the focus on the emotional, physical, and mental well-being of the individual who has survived cancer treatment.

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