I'm living a really long book filled with a lot of sad stories.
I am starting to believe we are in some way cursed. We try very, very hard to live a simple and comfortable life. To still find joy in some things despite everything thrown at us, and yet more shit just keeps getting piled on. A family can only take so much and I need to know when our load will finally lighten.
Quite a few weeks ago we were utterly shocked when we saw that *positive* pregnancy test. SO many emotions running through our minds. How will we manage all of Axel's needs, keeping life "normal" for Ryder AND bring a newborn into this world? What if the baby has MLD? What if the baby DOESN'T have MLD? How will my body handle the stress of this life and growing a human? We didn't know how we were going to do it but damn it we were going to fight for a way to make it happen. After all, we always planned for a big family so maybe this was the universe giving us something we didn't know we needed right now.
Once the shock set in we started excitedly planning how we were going to announce to our family and friends, as well as all the other tasks that needed to be accomplished in the next few short months! We were not going to let the overwhelming stress of another one of our babies being affected by MLD steal our joy of growing our family.
You'd think that alone is enough concern and chaos for one family to digest, unfortunately for us our problems kept snowballing into something bigger.
A couple weeks later I finally had an appointment for this lump that has been forming on my back for.. longer than I'd like to admit.. but I was finally getting in to get this "pulled muscle" checked out- or so I thought. After an ultrasound & MRI we got our answer, that YET AGAIN we didn't want- it's a form of cancer. A sarcoma of some sort, they just weren't sure what kind.
To spare a long time of boring details, I was passed around to multiple doctors until we finally found a team that was willing AND comfortable working on me. It took weeks; weeks of explaining to doctors what was going on, trying to get scheduled, finding someone who was willing to work on a pregnant lady with a tumor a hair away from her spine, and running pregnancy-safe tests to figure out what exactly were dealing with here. We finally found an amazing team that consists of oncology/sarcoma specialty, neurosurgeon and high-risk pregnancy; all three of these doctors and their teams worked together as quickly as possible to find answers for me.
After two biopsies (which mind you, I was awake for, the person who cannot handle any form of blood, needles or bodily fluids.. I'm not sure how I made it through.) We got the results and it was Ewing Sarcoma.. of course, a more *rare* form of cancer. Because we can't be any sort of normal in this family.
Ok.. we got that answer and the doctors have a pretty good chemotherapy regimen to cure this form it's just very VERY aggressive. Still, I am not concerned about fighting cancer, putting my body through all these tests and treatments and surgeries seems like nothing compared to what Axel has been dealing with at only 4 years old. All I was worried about was our baby. I didn't care what I had to do as long as I was able to carry this baby to term, safely.
They gave us two options.
They hardly ever see Ewing Sarcomas in pregnant ladies so the data was slim to none. What they did know was sticking to the known and true regimen was an 85% cure rate, however this regimen is NOT safe for pregnancy. From what little studies they have to go off of, people who chose to carry the pregnancy that went through full chemo usually ended in stillbirth. If not stillbirth, severe birth defects.
There is another option to alter the chemo regimen, do the "pregnancy-safe" drugs now, induce early, then do the harder drugs then assess for surgery to remove the tumor.
Either route, the chemotherapy will take a major toll on my entire reproductive system if we do not take precautions.
So this is what I'm hearing;
Option A: Risk it all. Risk getting excited to bring a new life into this world, having Ryder excited for a new sibling, putting my body through hell trying to handle chemo and growing a baby, prepping and changing our lives for this new beginning just for us to go a full 9 months to have the second worst possible outcome a mother could imagine (I'm already living the first worst, in my opinion). Maybe we get lucky and everything works out in our favor by some grace of God, or maybe I'm physically recovered from the cancer but mentally and emotionally dead from another loss.
Or Option B: Go a possible safer route but maybe you'll die. To change the chemo regimen is to lower that 85% cure rate, which I already feel like isn't high enough. On top of that, trying to endure chemo while pregnant, inducing early comes with a whole other set of problems and NICU stays plus the possible birth defects; and who am I to bring another life into this world that is only going to be living a hard and painful life due to genetic health? Only to continue for me to have to stay in the hospital for MORE chemo once the baby is born for a small chance this adjusted regimen will work and cure my cancer.. or it might not and now three kids grow up without a mother.
How do you choose? As a mother who so desperately WANTS this baby, how do you choose?
Do you choose yourself? Or do you choose this possible brand new life?
Choosing this brand new life meant that I wasn't choosing Ryder & Axel first. These boys need me here, they need me here for a long time. They need me healthy. They need me for the short time we already have together.
However in choosing myself, I lost part of me too. A part I'll never get back. A part of my heart that will never recover. Something I'll have to live with for the rest of my life. Another loss, as a mother. Another life event that'll keep me wondering "what if" for the rest of time. Not only am I continuously grieving the loss of who Axel should of been, I am now also grieving the loss of who this baby would have been. A kind of heartbreak you’ll never know unless you have been in this exact place.
All these choices no one should have to make under these kinds of circumstances, it makes me so angry I have to be the one making them.
But I will not hide from this & I will not be ashamed. I will not hide from these choices, and I will not hide from everything we will be going through as a family over the next year.
We are a family of fighters so we will continue to fight through this with strength and a lot of dark humor, in hopes of finally finding the light at the end of this very long dark tunnel.
After making the hardest decision of my life, we had to get to work right away starting chemo to get rid of this lady lump of mine.
After making sometimes 1-2 trips to Chicago a week, for a few weeks, to get everything figured out we were being told that we would do 8 rounds of chemo, happening every 3 weeks.
THEN right before we start the first round they tell us probably like 14 rounds of chemo happening every 2 weeks, first round outpatient, second round 5 day inpatient stay and then flip flop that routine going forward and we'd eventually figure out when to do surgery.
So you can imagine we were literally like what the fuck!? I guess they weren't joking about needing to be aggressive..
But really, how the hell are we gonna manage a 5 day inpatient stay, IN CHICAGO, with an 8yr old at home and a medically fragile 4yr old who we never leave for more than a couple hours... then me coming home, being home alone most days (all day long) trying to care for Ax & Ry while trying to heal myself. This sounds literally impossible to me.
Obviously we have figured out a way to make it work with the help of our super supportive families and bringing in a few extra hands to learn how to care for Ax, but it's still gonna be fricken hard.
Monday (June 6) I did a scan to make sure the cancer had not spread anywhere (good news, it hasn't.)
We had our first round last Tuesday (June 7) which was a whole day event. I had to get a PICC line placed since they couldn't get me in for a port placement... which if you didn't know you are also AWAKE for a PICC placement which, in my opinion you definitely should not be. Not to mention the doctor had a student with him so he talked through the whole placement process, which I did OK because I'm awkward and can't say no?? Obviously my nerves were insane and the first line they tried to place my vein spasmed so they had to REPLACE in a different vein.. I could have died just right there.
Somehow I lived and after that we did bloodwork and met with the oncology team to discuss what to expect and just go over the fine print.
After that it was time for round one. I wasn't really that nervous for it. After enduring all the emotional trauma leading up to this treatment, the infusion itself seemed like nothing.
For the following days I was sent home with a shot to give myself to boost the white blood cell count but of course had an allergic reaction to it, twice, and we decided to stop the shot. With doing that raises concern for my white blood cell count so basically making me immunocompromised (I know, what a time to develop such an issue #rona)
My count is low, but not as low as they were expecting me to be since not getting that boosting shot.
Other than almost dying from the injection, my after chemo symptoms weren't too bad. Extremely tired, and a little achy for a few days but after that it wasn't terrible.
We are staying on schedule for the inpatient stay and a port to be placed on June 21st. And many, many more visits & harder days after that.
So basically what I'm saying is, we can never catch a break and all of this is going to take a lot of time to heal from; mentally, emotionally, physically. Although it looks promising I will recover physically from all of this, I know mentally & emotionally I will never be the same- yet again.
I'm just tired of being the chaotic friend. I'm tired of having to go through all these life changing, traumatic events. I don't need any more life lessons. I feel that Im plenty humble and kind. And I try to do good in this world. I am not sure how much more of me I can change.
I'm just tired.
Send help or put someone else in charge of my life.