This Is Bad

Is the first thing that the urologist said to me as she walked in the room after keeping Jesse and I waiting an hour and half. By the end of our 30 minutes with her I felt the same as the day Jesse was diagnosed.

Our day started great. Jesse and I were invited to make a spot for 92-9 the Wave’s CHKD radiothon on June 1st. Jesse enjoyed visiting with the receptionist, who was a very sweet grandmother of 4 boys. In the studio Jesse refused to talk on the microphone. She really just wanted to hold it.

We left The Wave and headed for Jesse’s ultrasound at CHKD. Jesse did great. She laid there patiently while the technician ran the probe over her stomach and back. I could see the ultrasound screen and the enlarged left kidney.

After the ultrasound, Jesse and I grabbed some lunch. Then head up to urology a half hour early. At 1pm, a nurse took us back. Jesse was weighed: 13.3kg! (over 29lbs).

Then we began waiting. On the door was a sign stating the doctor would not see you if you were on your phone or texting. My reply to this is then cut your patient’s wait times down. Not like we don’t have work or other things we need to do.

When the urologist finally came in, she started by telling me that Jesse’s condition was bad. Then she began harping on prognosis. We have never been given a prognosis. How can you predict the future anyway? And in Jesse’s case, what would I do differently? If a doctor told me that she was going to die no matter what, I will still do everything that I have already done and more.

“Does she have any back pain or constipation?” Which honestly Jesse doesn’t. I have only had her complain about her back once. She has complained about her stomach, but that is after she has held her number 2 too long, and remedied after she goes to the bathroom.

Then she started in on why we didn’t have more of the tumor removed. I explained to her that Mike and I did a list of pros and cons, and felt the cons were too risky. She looked at me in disbelief.

Her next stop on the “happy” train was to carry on about why we hadn’t seen her before. Jesse’s left kidney was the factor tipping us off to her having cancer. Then she says to me after I explain all this, “Well them not sending you to see me tells me they were more concerned about the cancer.” Well yes. It’s cancer Stage 3.

After all this she gives me our options. We can either stick a tube out of Jesse’s back with a bag or place a stint up her bladder through the urter.

I asked her at this point how she felt about those options. Her reply was to tell me it wasn’t hers to feel about.

Ok, let me rephrase: “What would you do if this was your child?”

I hit a nerve with that question without meaning to. I asked the question as a parent looking to an expert for advice. She took it as I thought she didn’t understand where I was coming from.

She proceeds to tell me that her husband is dying from a neurologically disorder that doctors can’t diagnosis and she knows how I feel. I am really sorry that her husband is dying, but I didn’t ask that question to get her to sympathize with me. I asked to get her expert opinion.

Then she tells me that she loves her husband, but loves her son more and would do the stint. Even though her husband would rather they wait until it got so bad he needed the tube out the back.

I would rather do the stint anyway. Having the tube going out of her body opens her up for infection more than having a stint inside her body.

She did tell me that Jesse’s left kidney is a Grade 4 swell (the highest) and functioning at 30%. Normally the kidney should be operating at 50%.

Her right kidney is operating at 70% and has a Grade 1 swell (the next to lowest grade).

She also read me the results of the kidney flow test Jesse had done February 10. Basically the left kidney didn’t empty without the help of lasiks.

Then she discussed that Jesse’s stint will be good only for 10 to 12 weeks. At that point it will be removed or replaced. All I could think was great now every 10 to 12 weeks she has to undergo surgery.

She then left the room to get paper work. While she was gone, I had a question pop in my head about whether Jesse could swim. When I asked the nurse and she asked the doctor, the doctor acted like the biggest inconvenience.

Needless to say, I was pretty unhappy and upset when I left the urologist. I was so upset that I went and found Jesse’s oncology doctor, who the urologist ran through the ringer because she wasn’t included sooner.

God Bless our oncology doctor. Jesse was not on his schedule, but he took time to come out and talk with me about what the urologist said. I really appreciate him taking the time to talk with me, and to tell me that he research more information about the stints.

I think what is most painful today is the reminder that this is cancer and Jesse will never be free of it’s grasp. And it reiterates that research is vitally important because Jesse falls into the 62% of childhood cancer fighters who will develop other medical problems.

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And with that I will be shaving my head again from childhood cancer research. There has to be a true cure out there. Click here to see my page on St Baldrick’s or to be a hero for conquering childhood cancer too