Well, we are in Montana for a few days and I thought it might be a good time to try to write about Tristan. It is much more difficult for me to even think about writing about him, as compared to Madeline. I don’t know if it’s because I miss him so much, or that there’s still so much pain in the fact that he’s gone, or the ugliness of many of the experiences, or maybe even something else all together.
Some of the experiences we had when Tristan was sick were a blessing, but there are plenty of horrific moments that still haunt my dreams. I don’t think I’ll be sharing much of those moments- good or bad. I just want you to be able to have an idea of what happened to T that changed my life forever.
Tristan was 8 when I took him to the Emergency Room for intense headaches and vomiting. An X-Ray showed a mass in the back of his head, the headaches were caused by the pressure of the inter-cranial fluid that was backed up. I called my husband and he left work and drove us from the hospital near our home to the same one Madeline had spent so long in. He was checked into the oncology unit, and we were scheduled to meet with a Pediatric Neuro Surgeon. Because of our experiences with Madeline, we actually requested to wait for a different doctor, Dr Gruber. He arrived that afternoon and scheduled the surgery in a few days, allowing steroids time to ease the swelling before he went in there to resect the ping-pong-ball sized tumor.
The surgery went well, and Tristan came out of it in incredibly good shape. We found out after the fact that many patients have to relearn how to talk, walk, eat- all kinds of complications could have arisen with this surgery. Tristan had none of them. He was still his happy self, enjoying all the attention he was getting, while putting up with the physical discomfort.
A sample of the tumor was sent to Johns Hopkins to test for cancer, and it came back malignant. Because of the location of the tumor, the cancer was called Medulloblastoma. It was a rapidly growing cancer that had the potential to spread with the spinal fluid around his brain and down his spine. While Dr Gruber was able to resect the entire tumor, there were still cancerous cells floating around, that meant Radiation and Chemotherapy.
When it comes to childhood cancers, brain tumors make up about 5% of them. Of that 5%, Medulloblastoma makes up 20%- so his cancer strikes about 1 in 100 childhood cancer sufferers. It varies in aggressiveness, unfortunately, T’s was aggressive.
The radiology department molded a face mask of Tristan’s head so they could lay him on a table, put the mask over his head, and screw it to the table. This was so that while he was alone in this room with a ten inch thick door, he couldn’t move and they could focus the radiation beams on his spine and tumor site.
The chemotherapy (at the time) was the best available treatment for this aggressive form of brain cancer. It involved in office treatments as well as six months of monthly in-hospital (3 day minimum) treatments.
As chemotherapy does, T’s immune system was weakened, and I found myself keeping a packed “hospital bag” in the front closet for the dozens of time we just had to grab it and go to the ER. I was nursing Presley still, so there was stuff for T, me, Adrian and Presley in the bag. And yes, having a nursing baby at the hospital with you while trying to care for your sick child is difficult.
It took almost 10 months to complete the treatment and Tristan to be declared cancer-free. T was so frail at the end of it, I was so glad he could just get his strength back. But within four months, Tristan’s back was hurting and we took him again to the ER. This time they told us the cancer was sugar coated down his spine. The next day we discovered, all treatment options had been exhausted. The best we could do was a trial at Seattle Children’s Hospital to prolong the inevitable.
The next week we were in Seattle, and the Oncologist we saw felt Tristan’s condition was too advanced for this trial, and he would be suffering if we enrolled him in it. Watching him in pain, we agreed and raced home to a radiology appointment to try and reduce the size of some of the larger tumors that were the source of the current pain.
We started again on chemotherapy, sprinkled with a few radiology appointments, but there was only so much more radiation they could give him. Tristan steadily deteriorated. The tumors were growing around his nerves in his spine, which meant that the pain or malfunction could be anywhere in his body. We were told he could stop breathing in his sleep any time due to a couple of the larger tumors. Tristan slept in our room (we had put together a huge bed in there when he was first diagnosed so he could sleep with us), I woke up all the time to check his breathing.
Oh I forgot something. Six days after we found out Tristan’s cancer was back and terminal, I found out I was pregnant. Four months later, Tristan could no longer walk, and Adrian was having to do most of the care for him since I could not longer lift him. That time for the two of them was a real bonding time though, and I am glad they had it. We told Tristan he could pick out the baby’s name, and we gave him a DC Comic Encyclopedia and a Marvel Comic Encyclopedia as he requested. That’s how he came up with the boy’s name: J’onn James Tristan (Martian Manhunter, Wolverine, himself) and the girl’s name :Eva Amora (Eva from Wall-E. T was a romantic and he loved how Wall-E just wanted to hold EVE’s hand and called her Eva. Amora is Enchantress’ name.) We took him to my ultrasound so he could see his brother, and that was the last time he got out of the house besides hospital trips and his baptism.
Tristan was admitted to the oncology unit for the last time in the morning on November 7th, 2008- six months after his re-diagnosis. Things were getting worse, and at about 7 that night, after a drug trial to help his breathing failed, it clicked. We knew that was it. Tristan died before midnight. His death certificate lists his cause of death as pneumonia brought about by Medulloblastoma.
I wish I could say that the horrible things I was witness to or a participant in just to try and help my son were over, and life could just go on now. But missing him, not being able to take care of him, the loss of not having him in my life, the hurt of my other kids, the heaviness of the hole in my heart, seeing my husband grieving, it was just the beginning.
It still hurts. I’m having a terrible time writing this, I don’t even want to think about a lot of it, it is still too painful. And I miss my Tristan so much. My only hope, the one thing that makes any of this okay, is that he loved Jesus, so I know where he is and that I will see him again someday. Every year near November I pray: “Please don’t let us get to the next anniversary.” My prayer this year is “Please don’t let it ever be 7 years since I’ve seen my baby.” I look forward to the rapture with every fiber in my being. I of course long to be with my Savior, but I also know I’ll get to hold my T again.
There were many times when people came to visit, and you could see that the whole situation was overwhelming for them and their eyes said “I’m sorry, but I’m so glad it’s not my child.” I get that. I’m glad it’s not yours, too. And I’m not mad about those stupid things people said because they didn’t know what to say, or they just don’t know how to empathize. And we are thankful for the experience- the part that we were chosen to be part of a small number of parents (in our culture anyway) that has the awesome responsibility to walk with their child to the grave.
I want to be clear- there are many people and things that we are still thankful for in the midst of all the pain we live in. There are innumerable people who helped us throughout the process. Colette and Rainey were Madeline’s nurses at the time and we were so thankful for them. They often helped watch the other 5 kids. My sisters-in-laws helped with “communicating to the masses” via Caring Bridge. Then there were people who helped out with my work obligations, and cheering Tristan up with gifts and visits, those who came to the hospital and babysat my other kids there for me, and the donations we received to help ease the burden of how much extra life was costing. Then at the end, there were the friends that saved our sanity, and that Adrian still got paid for working for my dad, but was really taking care of T instead. That time we had as a family was priceless.
If there is one thing that disappears when your child has an illness like cancer, it’s time. There was no time. Some days we drove to and from the hospital 2 or 3 times a day- for weeks on end. That takes a lot of time- not to mention the time spent at the hospital. Then the time at home caring for your baby- which was not a burden, just extra time. Then the time trying to stay connected as a parent with your other kids. The time still having to keep a home together, and work, and obligations.
Somehow, God controlled time back then, we got it all done. We took care of Tristan, we continued to raise our kids, we survived. In fact, He still controls it. He has made some of the terribly vivid memories fade a little so they don’t stab so badly. He has worked with Hailey and Adrian over time to help them with their loss of a brother, he has showed us the value of time with our kids. and how quickly it can be gone. And He has reinforced the idea that time is not my enemy- in fact, time can be redeemed. Death is the last great enemy, the enemy that Jesus conquered on the cross:
I declare to you, brothers and sisters, that flesh and blood cannot inherit the kingdom of God, nor does the perishable inherit the imperishable. Listen, I tell you a mystery: We will not all sleep, but we will all be changed— in a flash, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, the dead will be raised imperishable, and we will be changed. For the perishable must clothe itself with the imperishable, and the mortal with immortality. When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: “Death has been swallowed up in victory.” “Where, O death, is your victory? Where, O death, is your sting?”The sting of death is sin, and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ. 1 Cor 15:50-57
We also understand what James meant when he talks about having joy in trials and persevering through them. Even in the midst of our sadness, we have the joy of the Lord. It is amazing how they can work hand in hand and side by side. It is a dichotomy that I cannot explain- how I can be permanently damaged and sorrowful daily, yet joyful in the midst of my tears and in my life.
As Adrian says, “Our goal here is to get our babies to heaven through a saving knowledge of Jesus Christ. One down, eight to go. ” And the bottom line is, he’s right.