Jesse’s Future After Treatment Has Ended

Today we celebrate the end of Jesse’s treatment in clinic with her receiving a medal from the Baltimore Half Marathon (thank you Medals4Mettle.org), a “Way To Go!” balloon, and a t-shirts signed by every one.  “Wow that’s awesome!” most people will think, and yes it is, but its not over. Jesse is not completely 100% cured. She will not be NED or “Cancer-free.” I absolutely hate those terms because they are delusional. We are not yet at the point where we can see every single cell and know which cell is going rogue.

However we had expected this as the outcome. When the surgery was decided to be too great a risk, we knew then that Jesse would be living with this tumor forever. Unless by some miracle of God her body removes it. Does this mean it could grow again? Yes. In the future her scans might show growth of that tumor. Could it reappear somewhere else? Yes. This is cancer.

But she went through all this treatment?! Yes she did. She did great. She was able to receive all the treatment.

Are the doctors happy with the outcome? Yes. Surgery wasn’t really an option because of the position of the tumor. They are very pleased she received all her treatment and is still happy to come to the hospital.

What is the size of the tumor? Can’t really say. It wraps and curves around in her body below her kidneys.

What will you do now? Jesse will get CT scans every 3 months below her neck. I am pushing for at least a scan of her head at some point in there. She will have her urine checked to watch the level of proteins that signal cancer. Since the tumor is there she will always have levels of the proteins present. If that level rises, we will have more scans to see what is going on. Her blood level will be checked too.

That’s it?! Yep that’s it. This is the best that research can provide us at this time. We need more research. I could scream that line over and over again. Research, we need more research! But inevitably someone would yell back: “Need more funding for more research!”

What about her kidney? Yes that poor kidney. It’s still inflated. In the next two weeks we will either have an ultrasound or a VCUG (they send contrast up her bladder and see how it back flows into the kidney, meaning another catheter for Jesse to endure.). If  flow to the kidney isn’t as it should be, then she might have a surgery to insert stints to keep the ureters open. I am not sure if we will be placing stints on the left side and the right side, or just the left. I might push for the right side to be done too since they are already in there. We’ll see.

With the kidney being inflated, what about bacteria? Jesse will remain on bactrium for another 6 months to act as a prophylaxis.

What about her spine where the radiation hit? The discs will probably not grow as they should. Therefore stunting Jesse’s adult height by about an inch. She might have some degeneration of the spinal discs that were directly hit over time.  We’ll just have to wait and see.

What about her weight? 12kg today (26.45lbs) She will remain on peractin until she reaches a weight closer to where she should be. I am not sure what that weight is currently.

What if she gets a fever? For the next month and half we call oncology, after that our regular pediatrician. And her symptoms will also play a big part in who we call. If she complains about her kidney, we call clinic. If she complains about her ears, we call our pediatrician.

How do you feel about this? I accept that this is what it is. Do I like it? no, I think it stinks. But Mike and I are going to continue to raise Jesse as if she doesn’t have anything wrong with her. She will be disciplined the same as her sister, and we will have the same behavioral expectations for her that we have had all along. Just because she has this tumor doesn’t give her license to grow up being a heathen, no matter what the outcome is.

What are you going to do now? Go on with life.  Help raise money for research. Send Jesse to school beginning in the fall once she has begun getting her immunizations back. Take vacations. Be a family.  Get on each others nerves every once in awhile. 🙂

This makes research all the more important to me.  Last year I shaved my head for St Baldrick’s to raise funds for cancer research. I will be shaving my head again this year. We are working on getting everything planned for our St Baldrick’s event in Williamsburg. I will post more as we get things finalized.

I don’t expect a cure will be found for Jesse, but in my lifetime I would love to hear them say we have really and truly found the cure for cancer. No child or adult will have to die this way.  If they did find a cure for Jesse and everyone else fighting right now to live, well then I would be beyond ecstatic. And honestly I won’t stop praying for that to become reality.

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St Baldricks.org is an organization raising funds for childhood cancer research. Please feel free to visit their site and learn more about the great things they are doing.