Reeling

It was another full week. I used to think that our life was full – with so many therapies each week and the doctor visits that Kaia required. Right now I’m just spinning. Here’s the update on what we found out this last week:

I couldn’t wait until last Tuesday so I called the surgeon’s office Monday afternoon to check to see if they had the results of the biopsy. They had received them early that morning. Their hunch was right: the final pathology report showed that Kaia does indeed have Wilms Tumor. The surgeon told me he had spoken with the oncologist that morning and that they would be calling me later the same day.

They didn’t call Monday so I called them Tuesday morning and the oncologist finally called me back late Tuesday afternoon. She was more than willing to talk with me over the phone and also had us set up the next day for several tests and an appointment with her. Kaia was scheduled for a sedated CT chest scan on Wednesday but when the nurse called to ask the pre-sedation questions and I told her that Kaia still had her cold from the prior week, she didn’t think that they would be comfortable doing it. She said they were canceling that test.

Wednesday we spent the whole day at the new-to-us childrens hospital. We were in the building for over 9 hours. Kaia had an EKG, an echocardiogram, a chest xray, and a did end up having the chest CT scan. They wanted to make sure the tumors haven't metastasized (they haven't, which is good news) and get baseline heart studies since some of the chemo agents can damage the heart. They ended up thinking Kaia was okay to be sedated for the chest CT, but she had already breastfed upon awakening that morning, so she had to wait 6 hours before she could be sedated. I do get frustrated and don’t know how we are supposed to keep Kaia gaining weight when they are constantly restriciting her food intake in preparation for procedures. Kaia couldn’t eat that day until 4pm. She also had more bloodwork and another urine test and we met with the oncologist there. Needless to say, it was a very long day.

The oncologist at the new children’s hospital’s plan is for Kaia to have surgery next week to place a port, and potentially get ear tubes and an unconcious hearing test (which we've been trying to coordinate for awhile now). They want her to start the first round of chemo immediately following the surgery, but we still haven't committed to anything in our minds or signed the consent. We just let them schedule it so that it's available if we decide to go down that road.

After six weeks of chemo, they want to scan the kidney to check for tumor shrinkage, and do a partial nephrectomy to remove the tumors if they feel it is safe to do so. The danger is damaging the kidney, which the doctor said is a significant chance with Kaia’s situation. That’s the scary part of all this. But surgery is the definitive treatment for Wilms, and without it, the tumors will likely regrow. Without chemo, they could continue to grow, burst the kidney, obviously impair renal function, and metastasize. Uggh. Just thinking about it makes me sick to my stomach.

Thursday we had a bit of normalcy as she went to horse therapy and had OT right afterward. I just realized reading that sentence how funny that sounded - 2 therapies in a day is what is normal for us! Kaia had an awesome session on the horse and is getting more and more interactive with the therapists and other kids there. It brings so much joy to my heart to watch her there. She looked so big when they had her standing while riding the horse.

Friday morning we were planning to leave for the regional conference in Ohio for her syndrome. We really just needed to get away from all the doctors, hospitals, and cancer stuff for a couple days.

But, I started to have second thoughts about going to the conference. Thursday evening arrived, we hadn’t even started packing, and I felt overwhelmed by the thought of having to do more “stuff”. I also didn’t want to spend the whole weekend talking about this new challenge and explaining the whole timeline, treatment options, and what this means for Kaia. That’s why I’ve directed selected family and friends to this blog. I just can’t keep repeating this information over and over again. It saps my energy and siphons even more time to thinking about cancer. Add to all that, I was feeling really rundown because I haven’t been sleeping well all week and hadn’t gotten more than 5 hours a sleep each night, and I felt like I was coming down with a cold. The whole trip/event started to seem less and less appealing. We had our respite provider Thursday evening because we were planning on packing, but we decided to go out for a quick dinner and together felt like it was best to make things less stressful on ourselves and stay home. I just feel so vulnerable, so stressed right now. My instinct is to circle the wagons and give ourselves time to absorb everything, let the feelings sink in, and make some decisions. This is our new reality, and it still seems surreal to me.

That night, at 11pm mind you, another parent organizing the event called to verify we were still coming. First of all, who does those kind of calls at 11pm? She is in the same time zone as us, so she definitely knew what time it was. Then, when I explained what was happening with Kaia, and why we wouldn’t be attending, she started pressuring me to still attend. She said, “Who better to understand what you are going through than your 22q family?” That comment struck me. I know these people get the 22q13 thing. All of them have a child with the syndrome. Most of their kids are older and they are veterans with it. But kidney cancer? Give me a break. How could they understand? None of their kids have it. Just like the cleft lip and palate, Kaia is the only documented kiddo with 22q13 that also has kidney cancer. I understood what this lady was saying about garnering support in a tough time, but I couldn’t help feeling like it was more important to her that the attendance was good for her event than listening to what I was saying about needing some time at home with my family to absorb this new diagnosis.

We also knew we wanted to go back to the original childrens hospital (heretofore CH1) with all the new studies and see if their treatment recommendation would be any different. Since we were planning to leave Friday morning, we had set up an appointment for next Tuesday with the oncologist at CH1, but I felt like that wouldn’t give us enough time to process any differences in treatment plans and make a decision in enough time to reasonably cancel the procedures at CH2 and set up treatment at CH1 if we decided to go that route. So we called Friday morning and they were able to accommodate us with an appointment that morning. The last thing I wanted to do was to go to another hospital or see another doctor but I wasn’t going to feel good if we didn’t consider all our options and have adequate time to do so.

Surprisingly, or not so surprisingly, their recommendations were indeed different. I’m starting to appreciate how vastly different doctors can be in their approaches to treatment. CH2 took a very reasonable, measured approach to the treatment they recommended. CH1, in contrast, staged Kaia’s cancer further (Stage 3 as opposed to Stage 1 or 2), and therefore recommended a more aggressive, longer course of treatment. That variability in staging shouldn’t exist but since Kaia only has the one kidney and they can’t do surgery to remove it initially, some clinical opinion is involved. I wasn’t surprised that CH1 was more aggressive, considering how they approached the biopsy compared to CH2.

Now we have some decisions to make. Tough decisions. Decisions about what extent of treatment to pursue and where to have it done. There are advantages and disadvantages for us in each facility. What we need to figure out is which one will be the best one for Kaia and for us over the next several months. We’re also considering an a la carte approach – chemotherapy at one, surgeries at the other. That would make things slightly more complicated, but it may be the best for Kaia. I also know we have the choice as the healthcare consumer to change providers at any time. Paul commented how lucky we are to have two excellent facilities in town between which to choose.

Since so many people have asked what Wilms Tumors are, I’ve posted a new link on the right hand side of the blog to the National Cancer Institute info page on Wilms. It has some general info and some links for more detailed info regarding staging and treatment.

I’m glad now that we chose to stay home this weekend. As of Sunday morning, I have a raging cold that kept me up much of the night last night. That wouldn’t have been fun for any of us staying in a hotel and sharing the room with Kaia. Yesterday, though, we took Kaia to the zoo which is always a great time for her and us, and utilized our respite provider in the evening to go on a date.

I have to say that I have felt incredibly supported at times this week. I want to thank everyone who sent positive thoughts, prayers, emails, phone calls, and offers of help. I really appreciate so much knowing that you all are there. It has kept me uplifted during an otherwise rough week.

I've noticed that it is harder for some people when we tell them the diagnosis. They don't know what to say and I can sense how uncomfortable it is for them. Paul even said how he felt sorry for them. You can see the shocked look in their eyes. They are speechless. I understand that. But it's nice when someone reaches out instead of backing away because they're uncomfortable.

It’s a week of decisions ahead and once again I’m going to ask for your thoughts and prayers for us to make the right decisions for Kaia and for strength to get through all this. We’ll keep you updated.