05/27/2026
Warning! Tired cancer parent rant ahead: (If you only want this weeks update scroll to the last paragraph.)
I wonder how much of our story I should share. I question if it is too sad, too harsh, or too much to handle. Then I remember these are the truths we are actually living and if it helps another parent going through this or bring awareness then it doesn’t matter if it is too sad, too harsh, or too much to handle it is still truths.
After being on a chemo hold for 3 weeks waiting for Jackson to recover from the damage chemo caused, we were told we would have to get a bone marrow biopsy to check him for relapse even though Jackson had been delayed this long before. This brought on concerns for sure so, going into this week we were a little more on edge about getting his results from last week’s spinal fluid tap. We usually get the results within 3 days, but the results never came. At clinic today, we asked about the test results from last week as soon as Jackson’s labs were drawn. The nurse showed us on the computer where the test results were being withheld from parents. This is all the information we got while we waited about an hour to see a doctor. We tried to keep our minds from spiraling about any and all possibilities of why these results should withheld from us.
We prayed and prayed. Kept Jackson entertained while we tried not to dwell on what we were fixing to be told.
This wait is cruel for parents who are already barely hanging on with PTSD from this battle we have been fighting for the last 9 months. When the doctor finally came into the room, she said the results were fine and didn’t know why they hadn't been released to us. Yes, we are grateful there was no bad news today but less than thrilled for the unnecessary stress we had added to the already stressful situation because some one did or didn’t press a button on the computer.
Cancer keeps you gripped with fear of the unknown. It changes the way you think and live. You learn that no one is immune from life flipping upside down in a moment. You live in fight or flight day after day. Praying and trying not to constantly brace for impact.
If a doctor deems the test necessary and the patient has to pay for the testing, should it be allowed to withhold results from the patient that is paying for those test results to be ran? No! Is it helpful to with hold information from the people that care about the patient more than anyone in this world? No! It is advisable to withdraw fluids and hide results from the person that the fluids belong to? No!
We were told during a previous visit by one of our oncology nurse practitioners that Children’s often chooses to withhold test results from parents to keep the parents from looking stuff up and asking unnecessary question during visits.
We have been told by Jackson’s head oncologist to just trust the system and not to seek information.
There are only a few people I trust with my children, and the system isn’t on that list. We have to face this as advocates for Jackson, coming out of this with as few regrets as possible, knowing we did everything we could to ensure the best care for his health now and for his future.
I’m not a fan of hindering informed medical consent. I’m not a fan of the lack of medical options these children have because their age limits their treatment options, or because parents are afraid to ask questions and get involved their child’s health.
Questioning anything at clinic leads to quick conversations about how CPS will be called on all suspected noncompliant parents. There is a major difference in compliance issues and simply asking questions about medical studies and finding out what options we have. Children fighting cancer deserve better treatment options! These children deserve to have as many treatment options as adults do, because their future matters too.
Jackson’s numbers tanked this week as expected; his hemoglobin dropped from 11.6 to 8.5, platelets from 192k to 58k, and ANC from 1160 to 260. He is still feeling well, so no blood products were required today. (Thank you again to everyone who donates blood. It helps save lives!) Jackson got chemo in his spinal fluid and port today. Now we wait and continue shots and chemo pills at home the rest of the week, and then wait some more for it to destroy his blood cells. The good and the bad. We continue this battle to kill as many blood cells as possible while still keeping him alive. We are praying that we are able to stay out of the ER and that Jackson continues to feel okay during this tough cycle.
Cancer is evil, and this momma is broken by the harsh realities for so many families!
