I burnt out fast thinking about the details of Eli's situation. Although I was and still am very in tune myself (as is Rob) with what we are dealing with....the thought of regurgitating it all again kind of gave me a stomach ache. The interesting part is that the initial trauma of being told he had cancer, then surgery, chemo, etc pulled me towards writing and sharing it out. It was cathartic and soothing. It made me feel better. Now it's flipped. I don't want to talk about it anymore. Well...at least not all the time. We are not defined by this. Eli is not defined by this. And although this year has changed us forever...it's not tragic. We have a happy ending.
On August 30, Eli was deemed 'cancer free' and officially in remission. Like a full circle the same woman that told us he had cancer was the same woman who told us he doesn't anymore. Katherine Hopkins. I'll probably remember that name forever. In the same ultra sound room. We sat in that room again...and sobbed again. This time just releasing all the anxiety and stress out of our bodies.
Right now, writing this, tears are streaming down my face thinking about that moment. See...I'm not a religious person. I think when I die my body will rejoin the earth and that will be that. I believe the same for my son. I don't believe we get to see each other again after our hearts stop beating. You can call me a pessimist but i call it a realist. I can't help myself. This is what I've thought since i can remember contemplating it.
I would have been broken forever if he rejoined the earth.
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| We will not miss this hallway in the Childrens Oncology unitat OHSU but are so thankful for the doctors and nurses that fill its halls |
So onward we march. We will try to hold onto what we have learned so we can apply it the next time life throws a curve ball. My 18 month old son has taught me more than anyone other than maybe my parents. I am more educated because of him. I feel empathy for others more because of him. I understand sorrow more because of him. I know life is life and we need to just enjoy it more because of him.
On October 9th he is scheduled to have his port removed. This should be a 1/2 day procedure and he should be recovered in a few days. And then on Oct 22nd he returns to daycare 3 days a week. Rob and I agonized over whether to send him back or not. Eli is SO social though and Rob and I can not give him what he gets from his school. The interactions he has with other children there is so good for him and he desires it so much we can not deny him that. The teachers have creative and fun activities that we would never think of or do. Plus...we are too lazy at the playground to interact with all the other families there. ha. yes...I'm kinda lazy. Like I've mentioned before...I don't pretend to be some super mom. I am just Eli's mom.
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| Exhausted from his last chemotherapy visit |
Eli will have life-long follow up care. But the visits will decrease with time. After his port removal he will have the same series of tests he had August 30th every three months for a year and a half. That is blood work, urine analysis, chest and back x-rays and an ultrasound. Since he had a kidney removed, blood and urine tests will be done to check how well the remaining kidney is working. The x-rays and ultrasound to make sure no tumor is not regrowing. At the end of this first phase of recovery...in Spring of 2014...he will probably go down to 2 visits a year until he is 12. The longer the time since treatment, the less likely the cancer will return. At this point, monitoring for late effects becomes an important part of follow-up visits. The blood tests will make sure that there have not been any changes in the functioning of his kidney. Eli still has high blood pressure from the removal of his kidney. Specifically his diastolic pressure is still way too high. This is the amount of force (pressure) that blood exerts on the walls of the blood vessels as it passes through them when the heart is resting...or between beats. In people with high blood pressure, the small blood vessels in the vital organs are most affected over time. These blood vessels become scarred, hardened, and less elastic, which means that they are more likely to get blocked or rupture (leading to organ damage or even organ failure). Basically we are going to keep a VERY close eye on that left kidney and trying to control that blood pressure with twice daily drugs. Right now the doctors say, "it looks beautiful" and to expect to see it grow. By the time Eli is an adult it will likely be twice the size of what it would have been, possibly even larger. Unfortunately this means no contact sports for Eli ever. I wasn't bummed when they told me he couldn't play football but cringed when they added soccer to the list. But baseball and basketball were not on that list...so Rob says we are good. hahaha. He can just play fantasy football like his dad.
Wilms tumor survivors do have a risk of developing another type of cancer within 15 years after the tumor was first diagnosed. The most important risk factors are whether treatment included radiation therapy and/or doxorubicin. Eli received neither of these because of his age. He also will have little to no emotional baggage from this experience. He is too young. Other than keeping himself away from direct hits to the stomach and seeing the doc a little more than other kids, he should be able to live quite a normal life. We are so grateful for that.
Over all...we. are. so. lucky. SO. lucky.
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| Kissing his "kicked cancers ass" present. This is "Becker" the bear. He is name after the hospital (Doernbecher) that saved Eli's life |
So that is where this "journey" ends for now. I will never be able to repay what I received from my family and friends this year. The amount of love that was just handed to us still overwhelms me. Oh....I'm crying again. Gosh...this has been such an incredibly emotional experience. Being given prove that the people you have known throughout your life really, really love you...genuinely... and sometimes after years of not seeing each other...is wonderful. And makes me cry every time i think about it. I know such amazing people and even if I rarely get the opportunity to say it...i love you. and thank you.
Your hearts protected mine from crumbling.
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| Strong enough to finally walk! |
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| Just a normal little boy enjoying summer |
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