James has Wilms' Tumors (kidney cancer)

James has kidney cancer. 

As David and I were driving to baby Isaac’s newborn photoshoot (5/27) we were talking about how lucky we were to have three beautiful and healthy boys with none of them having any major health problems, whoo boy did we speak too soon. Six days later David found himself in the Seattle Children’s Hospital Emergency Department with James awaiting a diagnosis that would forever change our lives.

James has always had a round tummy, as a baby he had rolls to rival the Michelin Man. As he grew to be a toddler, his rolls all went away, but his round tummy stayed. We always assumed that it was because toddlers often have large tummies until they grow taller and it slims out, that was our experience with Neil. However, James’s tummy was always larger and rounder than we thought it should be, but we never questioned it too much.

At James’s 2-year appointment (5/9), the pediatrician examined James and mentioned that James’s large and round tummy might be due to bloating, as his stomach seemed a bit hard. She recommended a new diet to reduce bloating. It wasn’t easy, but we tried our best to hold to the diet. Occasionally David would feel around James’s tummy to see if he could tell if James’s stomach felt hard and bloated or soft and squishy. While feeling around David found a hard lump on James’s right side. After a quick google search, the stomach is supposed to predominantly be on the left side. If the stomach is on the left side, what was this large hard lump on his right side? We watched it for a few days and no matter how well we kept to the diet, it did not go down. David thought he was being paranoid, but it seemed to him that it was actually getting larger. We decided it was time to schedule another appointment with the pediatrician to look at the lump, but they couldn’t see us for a full week! We couldn’t even schedule with our regular pediatrician who was too busy to see us. We weren’t as concerned as we should have been and waited the week for the appointment. 

At the appointment (6/2) the doctor spent a long time feeling around all over James’s body and ordered an X-ray. When the doctor seeing you pulls in your actual doctor who was too busy to fit you in, you know its bad news. They said that they saw some abnormalities in his abdominal region and suggest that we immediately go to Seattle Children’s Hospital Emergency Department for better imaging to see what the abnormalities actually were. I cared for Isaac (newborn) and Neil (five) at home while David took James (two) to the hospital. 

David got to the ED (Emergency Department) at around noon on 6/2 and would spend the rest of the day there while they ran blood tests, performed an Ultra Sound, an X-ray, and a CT scan on James. In preparation for the CT scan, James had to drink something called “Contrast” which is a substance that causes the particular organ or tissue under study to be seen more clearly. For the CT scan they gave James an anesthetic and asked David to return to the room and wait for the results. About an hour later the attending Doctor came and informed David that there was a complication during the CT scan where James had an allergic reaction to the Contrast and stopped breathing. They placed a breathing tube and brought him to the Intensive Care Unit (ICU) where he was stable. David was alarmed when he walked to the room and saw maybe 10 doctors and nurses in the room; it’s never a good sign to see that many doctors in one place. James was sedated and with the breathing tube, all his vitals were stable. 

The doctor sat down with David, explained what happened, and also walked him through the CT scans; luckily, they were able to get all the scans they needed before the reaction. He explained that they found a mass on each kidney, as well as a few in one of the lungs. The mass on the right Kidney was very large and had completely crowded out the kidney to the point it was no longer functioning. The mass on the left kidney was much smaller, but still significant, and was not yet diminishing the functionality of the left kidney that much. The masses in the Lungs were much smaller than either of the ones on the kidneys.

The diagnosis was Stage 4 bilateral Wilms’ Tumors, which means that he has tumors on both kidneys, instead of just one tumor on one kidney and it had spread to other parts of his body (lungs). The right tumor is so large it is squishing everything else in his abdomen causing other things like decreased appetite, increased breath rate, and increased blood pressure. All things that the doctors were worried about and could cause significant problems in the future if not held in check.

According to a handout the doctors gave us, there are about 500 cases of Wilms' Tumors each year in the United States, all affecting children. This cancer seems to be somewhat treatable and the success rate of the treatments is about 90%. We don't know James's specific chances, but pray, listen to doctors, and remain hopeful. 

After an almost sleepless night, the next morning (6/3), David met with the attending oncologist who further explained the diagnosis, provided a roadmap for James’s treatment and answered any questions we had. It was a lot to take in, thankfully they repeated everything several times over the next few days to let it sink in. The treatment plan is six weeks of chemo, then a CT or MRI scan to get a good look at the tumors to see how much the first round of chemo shrunk the tumors. If the doctors are satisfied that the tumors shrunk enough, they will proceed with surgery to remove the tumors and cancerous tissue. If the doctors haven’t seen the shrinkage they are looking for, they will call for an additional six weeks of chemo treatment, followed by more scans. The goal here with using chemo to shrink the tumors before surgery allows the surgeons to save more healthy tissue when removing cancerous tissue. The doctors are also hoping that the chemo will reduce the size of the tumors in his lungs enough that they can use radiation to remove the tumors rather then surgery on the lungs to remove them. All this alongside additional chemo treatments to prevent the cancer from growing back. All in all, the full treatment plan should take 5-8 months (wide range, we know, but there are a lot of unknowns).

Later that day, James received his first chemo treatment. The last 4 days of our initial hospital stay were kind of a blur with numerous visits with Oncologists, Nutritionists, Pharmacists, Social Workers, Physical Therapists, and more. I remember James being bothered by the oxygen monitor taped to his big toe and getting to take it off for physical therapist visit. Immediately after we took off the oxygen monitor, he looked at me and pointed to his collar where his port had been placed and asked me with his eyes if I could fix that too. It broke my heart to know that there is so much he will go through over the next several months that I can’t make better, including removing the port that helps him receive the chemotherapy treatments and allows the doctors to do blood draws for lab work. At the hospital, the doctors and staff were super nice and understanding that this was all new to us and a big shock. We weren’t in denial, but we really didn’t understand how much our lives were about to change.

After we were discharged on 6/6 David would end up taking James back to the hospital 4 out of the next 8 days for labs, checkups, treatments, and infusions. Then on 6/14 James came down with a fever and David took James to the hospital for what would end up being a seven day stay. Since James’s diagnosis on 6/2 we have visited or stayed at Seattle Children’s 15 out of 20 days. To be fair, the rest of his treatment should not be like this. There should be far fewer visits, and hopefully any future hospital stays will be shorter. Best case going forward would be going in once a week for treatments with the occasional scan, lab, blood infusion, hospital admission for fever or surgery.

James is a trooper, after being discharged on 6/6 it was really hard on him the first few days, he wanted to be held by David nearly 100% of the time and wouldn’t go to anyone else or be put down by himself. But after a few days he started showing signs of being himself by smiling and laughing, walking around a little bit, and sleeping/napping well. We got a tip from a friend of a friend who had gone through having a child with cancer and recommended we do family photos quickly. Our family photographer was able to fit us in and captured several beautiful photos of our family. The following day we were back at the hospital, so it was a big blessing we were able to get the photos taken. 

Even during the second hospital stay, after his fever broke, he was back to himself smiling at all the nurses, laughing and walking around the whole floor. He became a nurse favorite.

One of the reasons the most recent hospital stay was so long was that they placed a feeding tube on 6/18 and wanted to monitor it and make sure that we knew how to use it properly while at home. The Doctors were worried about his nutrition because the tumor has made his stomach so small, he has a low appetite. The feeding tube will be pumping in a nutritionally complete formula 24/7 to supplement his normal eating to make sure his body is getting everything it needs to stay strong, withstand the treatments, and fight the cancer. This is still very new to us and we (especially James) are still learning how to live with it. It was easy enough when he was sitting in a hospital bed all day, but it’s a lot more difficult with a toddler that runs around everywhere. While it can be a nuisance at times, we are grateful for it and have a piece of mind that he is getting all the nutrition he needs. 

While there have been lots of tears and sadness in the last three weeks, the saddest thing for David was the other day when James handed David something, David grabbed it and noticed it was a few strands of hair. David immediately took hold of a chunk of James’s hair and tugged and the whole chunk came free with very little resistance. We knew this was inevitably going to happen, but the realization it had already come hit the hardest. In the last few days, it has increasingly been falling out faster and faster. It would irritate James by getting in his mouth or causing itching. We decided it was time to shave his beautiful curly blond hair off. David went to the store and bought clippers, we sat James down on a chair and started clipping. James did really well for most of it, then it started to irritate him, unfortunately there were still very long strands here and there and it looked terrible. Over the next few hours David would get the clippers and do a little bit her and a little bit there. There are still some tufts of hair that are slightly uneven, but it might have to do. We look forward to his hair growing back even more beautiful and curly than before.

The last month has been the hardest time of our lives with welcoming a newborn and having a child diagnosed with cancer all at the same time, but we have not been alone. An army of friends and family have flocked to our aid to provide meals, child care, toys, friendship, prayers, and countless other forms of help. Thank you. This experience would be so much more impossibly difficult with out this help. People text us daily asking if there is anything they can do to help, even if we don’t have anything at the moment that they can do for us, it fills our hearts knowing that they are there to help when needed. We are keeping a list of people who have offered help to refer to as we know we will need a lot of service over the coming months. It's humbling to need so much help. To all of these people, thank you; nothing has been taken for granted and we are truly grateful for all you have done. 

David and I look at each other and we know we will make it through this. We don't know what's going to happen, but we are hopeful to have the miracle of our son beating this cancer. Right now 5-8 months seems like an eternity, but we hope we will look back at it as a time where our family grew stronger together through this trial. In the future, we hope to be able to look back at all of the blessings that came to our family over this period of trial. Thank you for reading and of course for your love, support, and prayers.