Another day, another doctor (this is a long one)

Last Monday we saw the pediatric surgeon and oncologist. The update on the masses in her kidney is as follows: April 24th Kaia had a CT scan. The hospital, not surprisingly, could not coordinate the ear tube surgery and ABR hearing test so she just had the CT scan. They still had to sedate her, but it was “conscious sedation” versus full-on anesthesia which was supposed to be much a lighter level of sedation. We were both with her the entire time. It was really hard watching her little body go into the CT machine. She was “drunk” the whole day Friday from the sedation wearing off.

I had a doctor’s appointment for myself scheduled for later that morning and I was planning to cancel it. However, I thought, what better day to keep her strapped in the stroller than today? Normally I don’t like to keep her restrained when she could be practicing moving her body. But that day she was so impaired. She literally was like a drunk getting behind the wheel that just doesn’t realize how impaired they are. She would try to stand up from the floor and walk and would start keeling over and couldn’t understand why her body wasn’t working the way she wanted. It was dangerous for her and stressful for me. So, I strapped her in the stroller, and I went to my appointment and got that out of the way.

That night we also had a parents night out scheduled, which we were going to cancel because Kaia was still so unsteady on her feet. We realized that most of the time they hold her anyway. She’d be safe and there was no real reason not to go. And we really needed a night for us after the day we’d had. We dropped Kaia off and went back out to the car, which now suddenly wouldn’t start. No warning signs before of hesitant starting. Nothing at all previously to indicate that anything might be wrong. Completely out of the blue it just wouldn’t start.

By some lucky twist, we had jumper cables in the trunk and another nice parent gave us a jump. Thankfully Sam's Club was close by and open, so we spent our date night in the parking lot at Sams Club, Paul’s changing of the battery aided by the helpful cashier’s offer of a wrench loan. If it had to happen, it was actually a good thing that it happened when it wasn’t Kaia and I alone in the car, and that it happened on a night when we had time to deal with it and weren’t in a rush to get somewhere. Even after changing the battery, we still had time for a quick dinner before picking up Kaia, who, as it turned out, had a fine evening as well.

We didn’t hear back from Dr Kidney until right before leaving for the parents night out (after much pestering of his office). He informed us that they saw multiple masses in her good kidney with the CT. They didn’t look like anything he had seen before. His initial reaction was that he recommended a biopsy but since he was on his way to a kidney conference he was going to ask a few other docs there what they thought. He also asked the most ridiculous question – “Does she have any other medical issues?” I was like, “well, you know she has this syndrome…22q13 syndrome…yes it affects the kidneys…”, etc. Unbelievable. You’d think he’d look at her chart before he called us, right? Anyway, he asked if this was common with her syndrome. I immediately jumped on the parents’ message board for her syndrome and searched for any kidney issues besides multicystic kidneys. Hydronephrosis, reflux, and multicystic kidney are all reported. But nothing else. So I posted a question specific to the masses and also emailed the researcher after whom Kaia’s syndrome is named and asked if she knew if any kidney masses had been reported with the syndrome. I copied Dr Kidney in on the email as well as her developmental pediatrician. Dr Kidney told us he’d get back to us early the next week. Dr Development had nothing to add.

Monday came and went. Tuesday came and went. Wednesday came and went. Normally I’d be on the phone hounding a doc who didn’t get back to us. But I really wanted to give him time to check all the resources on his end. And, it was all too easy to ignore this. I don’t really want to think about it being anything serious. I knew the options were to wait and watch the masses or biopsy. Scary thoughts if a biopsy came back malignant because she only has the one good kidney.

Kaia had an appointment Thursday morning with her developmental pediatrician. We asked him if he could be a resource for us in coordinating situations like the one last week with the ear tubes and CT. He agreed that was his role. Kaia’s got so many issues that someone needs to be quarterbacking her care. Someone on the inside of the system. Because no matter how loud I scream, none of these people hear. He left the room and immediately started making phone calls. He was already aware of the kidney situation because I had copied him in on the email I had sent Dr. Researcher regarding if any other kids with the syndrome had experienced these types of kidney masses. He just thought that Dr Kidney was following up on it. He coordinated an appointment for us with the oncologist and surgeon. I realized after speaking with him that we may have questions for Dr Kidney too when we met with these other doctors. However, the magic contact was gone. I was now stuck again with the nurses and once again, was given the run around: “No, their office (the other doc’s) needs to be the one coordinating this”, they emphatically stated. Messages were left, no phone calls returned and a repeat of the week with the ear tubes commenced. I’m so done. I know if we want anything done we need to speak directly with the doc and have him do the legwork. I am so sick of this hospital. I can’t believe that all hospitals treat patients and parents this way. There is only one other option in Indianapolis - another children’s hospital that may or may not be better. Indiana just seems to have such an inbred/nepotistic population of medical professionals. Most are trained instate (who would actually want to move here to practice medicine, after all?), they all know each other, and seem to have the same attitude and training regarding patient care. I don’t hold much hope that the other hospital would be much better.

The bottom line is that Kaia saw the surgeon and oncologist Monday. I had been planning on going to a new support group meeting that meets once a month on the first Monday morning of the month. I had one-on-one childcare set up at the meeting for Kaia and I was really excited to go. I felt a little resentful that the appointment meant we couldn’t attend the meeting. However, we both really wanted to hear the doctors’ opinions and recommendations. I was very nervous about what they might say but I was trying to go into it open to receive all the info and get our questions answered. All this just seemed so unfair. I couldn’t even think farther ahead than the next day.

We saw the surgeon first and he was pretty wishy-washy about whether a needle biopsy would be possible. He recommended a laparoscopic biopsy. That is pretty major surgery. She’d need two weeks to recover – couldn’t do any therapies. Then we saw the oncologist who also was wishy-washy but consulted with the surgeon and together they solidified their recommendation for the laparoscopic biopsy. They felt it would give them the best possibility of obtaining an adequate tissue sample and they didn’t want to assume that all the tumors were the same. Since there are two large tumors and several smaller ones, they wanted to at least surgically biopsy the two larger masses and maybe even some of the smaller ones. We were concerned about Kaia’s recovery and possible impact on her kidney function. I also felt that it was excessive to biopsy so much and didn’t agree that we couldn’t assume they were all the same. We were pretty overwhelmed with everything that day, though.

They also drew Kaia’s blood and wanted to get a urine sample. So they placed a couple pieces of gauze in her diaper and we had to walk around and wait for her to urinate so they could get a sample. It was afternoon by that point and we waited until 1:45pm. Kaia hadn’t urinated by that point, I was completely sick of the hospital, and I really wanted to get her home for her nap so that she would take a decent nap and I’d get a little break. I asked if we could just put the wet gauze in a Ziploc and Paul would bring it in the next day. They really didn’t want to let us leave but finally relented and gave me the syringes and a vial to extract the urine from the gauze. Of course Kaia fell asleep on the way home but got a decent nap anyway.

Also, while waiting for the phlebotomist to draw her blood they had sent us to the general waiting area but then came back to get us and asked us to wait in their waiting area. We were a little confused but did so. After they had shut the door, they explained that the other kids in the general waiting area were being tested for a virus. They didn’t say what it was but I was even more paranoid about how in the world we were supposed to keep Kaia healthy in these germ-laden environments. We wash and we wash her and our hands. We use hand sanitizer at every turn.

That night the questions about why they couldn’t do the less invasive needle biopsy kept percolating in my brain. The next morning I called Kaia’s pediatrician and he agreed that it was a rational plan to biopsy by needle and that they should be able to do that. In fact, he felt like considering everything, it was the best thing for Kaia. What if these turned out to be benign? To put her through that invasive of a procedure to find that out when we could’ve done it an easier, less invasive way? Meanwhile, the surgeon’s office was calling us, pushing us to schedule the laparoscopic biopsy. I told them we still had additional questions and I called the oncologist to speak with her about it again. The whole day I was off and on the phone with them about it. She finally called late in the day to say that everyone there – the surgeon, herself, the pediatric and interventional radiologists, felt that a laparoscopic biopsy was the best course and beyond that, the interventional radiologist refused to do a needle biopsy. He felt that in order to obtain adequate tissue he would need to stick her multiple times and she’d be at increased risk for bleeding. Again they pushed us to schedule the surgical biopsy. I was beyond feeling pressured and fed up at that point. I couldn’t help feeling like these people just saw my daughter as a great health insurance package and wanted to do as many things to her as possible to make the most money possible. Encouraged by Kaia’s pediatrician earlier that day, I told them we’d be pursuing a 2nd opinion.

So Kaia’s pediatrician directed us to a surgeon at the other children’s hospital in town. No magical patient relations there either. I couldn’t make the appointment, I was very condescendingly told. The referring doc had to do it. I called the pediatrician’s office (again), who called the surgeon’s office to make the appointment and we were scheduled to see the surgeon the following Tuesday, a week away. Since this was such an urgent matter for the docs at the other hospital, I called (now that Kaia had an appointment made by the pediatrician’s office, they would actually talk to me) and begged for an earlier appointment. I called at least 4 more times. Finally they called me back Wednesday at 1:30pm and said that the original surgeon couldn’t see her but another one was available and how soon could we be there? Kaia needed to be changed and nursed (and would probably fall asleep for her nap as was usual). I still needed to get presentable to leave the house, and Paul still had to pick up the CD of the scans from the other hospital and meet us at the new one. Talk about rushed. We got there at 3pm.

This doc seemed very optimistic that not only could they do the needle biopsy, he agreed that in light of everything, it was the best course for Kaia. Wow – a surgeon that actually wouldn’t do surgery because it was the best thing for the patient not to do it? Astounding. Fortified with hope, we left him so that he could consult with that hospital’s oncologist and to do some more research before coming to a final recommendation for us. This doc also seemed more up to date on the current research/protocols for treatment, or maybe he just actually considered other options and did a better job communicating these to us.

The next day he called and said that they were pretty confident that this was Wilms Tumours. They did indeed recommend a needle biopsy as opposed to laparoscopic biopsy, and in direct contrast with the other hospital, they were not only confident that they could get adequate tissue for a diagnosis, but that they would only have to biopsy one tumor. Due to the tumor location, they were also confident that they could so by insertion through Kaia’s back, thereby avoiding the peritoneal cavity. Biopsying through the peritoneal cavity would change the staging if it indeed is cancer and would mean not only chemotherapy but also radiation. They had a slot the next day on Friday and we took it. This was all happening so fast but I was so glad that I stuck to my guns and had pursued a 2nd opinion. I was still nervous about the general anesthesia but we knew that we wanted to find out what the masses were.

We received the preop registration call from the hospital. We got at least 3 different preop instructions regarding npo/clear fluid timeline restrictions. The biopsy was scheduled for 11am. The first instruction was that I could breastfeed Kaia until 8am. The 2nd was until 5am. The last was nothing by mouth after midnight. The first 2 instructions were from dr’s. The last was from the assistant that did scheduling. She said that babies under 12 months could have breastmilk up to 6 hours before but since Kaia was 22 months she couldn’t have anything after midnight. She kept asking how old Kaia was and repeating that it was breastmilk. I’m sort of starting to feel the toddler breastfeeding discrimination here.

Wouldn’t you know it – Kaia hasn’t had a cold for months now and came down with one Thursday night. I think Paul thought I was making it up because I was so afraid of the general anesthesia, but sure enough when she got up on Friday morning she was sneezing and had a runny nose. Not too surprising after where we had spent the whole week – in hospitals and doctors’ offices. I called the hospital and they told us to bring her in since she didn’t have a fever and that the anesthesiologist would examine her to determine if it was safe to proceed with anesthesia.

The anesthesiologist felt that it was safe to proceed. It was a quick procedure. The radiologist was a little flippant and couldn’t even remember Kaia’s name when he called to tell us he was done and that she was going to recovery. He said they’d be calling us to “let us know when you can go see (long silence) um…your kid.” It would be nice if the doc’s could remember her name but we both agreed we really didn’t care as long as he did a good job in the OR. He said the pathologist’s preliminary report was that it was Wilms Tumour.

By now we knew this is the most common form of renal cancer in children under age 6. It is highly treatable but the standard treatment is removal of the affected kidney followed by chemo. Normally that’s how they do the biopsy too. Since most kids have 2 kidneys, they remove the whole thing, biopsy it, and if it is cancer, there’s no chance of tumor spillage like there is with a needle or laparoscopic biopsy. Since Kaia only has the one functional kidney, that wasn’t an option.

They kept Kaia for 4 hours from the time she woke up for observation since she had a bad experience after the cleft surgery. The good thing was I was able to nurse her immediately when she woke up in the recovery room. They are such Nazis about starting on clear liquids but we had a great nurse in the recovery room who said go ahead to nurse and I was so glad once again that I am still nursing her. She was so comforted by it and nursed off and on the whole time. She was very alert for a while and then fell asleep nursing for a very nice nap.

She was asleep in my arms and my back started to hurt from sitting in that position. It felt sort of like we were on a plane, with her as a lap child, and I was stuck because she had nursed to sleep and if I moved I would wake her. I also started to feel as if the little curtained-off private room area we were in was a prison of sorts. We couldn’t leave. I just wanted to go home. I wanted her IV out, those hospital pj’s off her, and the ambient noise of the hospital to stop. I just hate hospitals. It’s as if time stands still there. It goes in some deep black hole and you can never get it back. It’s like time limbo.

But I took the opportunity to read and actually finally finished El alquimista, the book for my Spanish class that ended on Tuesday. A new session restarts this Tuesday and it’s through a local organization so I don’t receive a grade or anything like that, but it was still bothering me that I hadn’t even found time to finish the book. I get frustrated that I can’t devote the time I’d like to outside of class to studying, reading, and writing.

The one very noticeable difference about the new hospital was how they were obviously more used to caring for kids with special needs. I must have heard the words “g-tube” more times on Friday than I have in my whole life. No one assumed that Kaia could do things that are developmentally appropriate for her age. In fact, they assumed the opposite. We had to ask the nurse who was weighing her if it was okay for Kaia to stand on the scale instead of sitting. And no one assumed that she could walk. I wouldn’t say they were surprised that she could, they just didn’t expect it. That aspect of things was so different. It was refreshing.

And Kaia, well, she actually did better after the anesthesia for the biopsy than she did after the sedation for the CT scan. The anesthesiologist said the agents he used were faster acting. She was totally alert and playing like normal Friday evening. I had such a feeling of relief leaving the hospital and being home with her and Paul that evening. The joy of just being home and having her happy was almost more than I could imagine.

Back to the biopsy itself. I feel so vindicated in our decision to have the needle biopsy rather than the laparoscopic procedure. I hope that if it is cancer, this procedure doesn’t put her at increased risk for metastasis, but the only other options were to treat it like cancer without biopsying it at all, not do anything and just watch it, or proceed with the laparocopic biopsy which would’ve advanced the staging further.

The pathologist will complete the final report by Tuesday. I truly hope they do a thorough job with the tissue that they do have and perform all the tests and stainings in order to rule out anything else. I hope their suspicion that this is Wilms doesn’t hamper a thorough examination of the tissue.

If the final report agrees with the preliminary report, we plan to meet with an oncologist from the new hospital next week and go from there. If it all sounds like a lot, it is. It is overwhelming, yet we are dealing.

I just was not ready for this. Sometimes it seems like nothing is easy with Kaia. Even her drinks are difficult. They are a mixture of whole milk yogurt for thickness, carnation instant breakfast, and either breastmilk, whole milk, or half and half if we’re feeling like she really needs the calories. There’s the fact that she’s not chewing yet. Feeding is a struggle – it’s getting better in some ways but still a struggle. There’s the ever-present fear in the back of my mind that if she doesn’t gain weight the doctors are lurking around the corner watching and waiting to put a feeding tube in her. There’s the constant awareness and reminders required to keep her from w-sitting all the time. There’s the fact that she is still unsteady enough on her feet that she can’t wear shorts or dresses without leggings or her knees will be a bloody pulp from falling.

But we knew all those things were possibilities. Even more than possibilities, they were likely. But cancer??? That’s something I wasn’t expecting.

Not to mention I’ve got my own issues with cancer and traditional treatment. I watched my grandmother, my mom’s twin sister, and my mom, all go the route of traditional western cancer treatment and die a slow death. I have and am watching my sister bravely undergo surgery, chemo and radiation. All the while the cancer progresses. I don’t know if I can put my daughter through that. Part of me believes it might be better to just vibrantly embrace and enjoy the life you have and die when the time is up. But if this is something truly treatable, I can’t deny my daughter that treatment. I think we are just both scared that because she only has the one kidney, we’ll put her through all this: another surgery to place a central line, chemo, possibly radiation, and more sedations for scans. Then the docs may tell us that either the chemo isn’t working and they need to do something stronger, or they may want to surgically remove the tumors. I’m scared to death that if they try to that, they will damage her one good kidney irreparably and she’ll be left without a kidney and need dialysis. And all the prior surgeries and chemo, all that pain, will have been for naught. But all we can do is deal with the info we have at the moment and try to make the wisest choice in consideration of everything.

I know it sounds like we have been consumed by doctors, hospitals, and been bogged down by thoughts of what the future might hold. In a lot of ways that is true.

But, in the midst of all this, there have been moments of great joy over the past couple weeks. There was Kaia starting to sign “My turn” – a huge accomplishment for her, her squeal of surprised delight at the first sight of her new tricycle, and her already almost getting that she needs to pedal the wheels to make it go. There was watching her start to interact and initiate contact with the other kids at horse therapy while the therapists write their notes, and seeing her intense curiosity and slow warming to dogs that the neighbors walk down the block. There is her huge smile when she sneezes and she looks to you to say “Bless you”. There is her progress walking quite skillfully now on uneven terrain like the grass instead of just the sidewalk/driveway. None of these doctors or diagnoses can take those joys away.

And, like Paul said, what he took away from the biopsy on Friday was how well Kaia did. How well she bounced back. How it was harder on him that it seemed to be on her. She really is such a strong girl.

I know that if you are still reading this I can count on you for this request: Pray, if that is what you do, for her. Pray for us. Send us positive energy and warm thoughts like rays of sunshine to warm our souls. Because if this is what they think it is, we are going to need it.