For May’s spotlight, we are back to Oregon to bring you Oaklyn and her family. Her story echoes what we and other families have experienced. It’s a lot of unknowns, and then you get thrown into the briar patch. It’s quite a lot to take in that your child has cancer, and then to even try to think of questions or attempt to understand the next steps is incredibly difficult. Regardless, we all fight for our kids and get them the best care that they can get.

In mid-June, Oaklyn was 2and a half and brought COVID into our house after we spent the entire pandemic somehow avoiding it. She had an intense fever and headache and, basically, became one with the couch for about a week. She finally started feeling better and acting normally about 10 days later around 5pm. She then had a fever of 103 out of nowhere, followed by intense vomiting, but no positive COVID test, no positive test for any flu/RSV. The fever continued all through the night. Motrin and Tylenol didn’t make a difference, and I checked her temperature every single hour throughout the night. When she woke in the morning, the fever was gone and she was back to her chipper, wild self.

2 weeks later, around 4pm, she gets another 103 fever, intense vomiting, and was extremely lethargic. I didn’t know if she had eaten something, gotten sick again, or had something else bigger going on. Again, when she woke in the morning, the fever was completely gone, and she was happier than ever.

I documented every single thing she ate, touched, and did for weeks.

I had a lot of my own health issues as a teenager and into adulthood. I’m very much the kind of person that goes ‘Before going to the doctor, I’m going to try A, B, C before going in…that way I can tell the doctor that these things were already done, and do “what’s the next step from here?”’

She had 6 of these ‘episodes’ between June 24 and October 3. On October 5, she had her PCP appt, where her Doctor claimed she had some intense constipation, and that would explain her symptoms. I didn’t think it was constipation for even 5 minutes, but gave the benefit of the doubt and was willing to try some Miralax to prove that pooping wasn’t the issue. Just 2 days later I had my own PCP appointment and took my daughter in with me for a second opinion. In the 2 day time, my daughter developed hard, painful, cyst-like bumps all behind her ears, down her neck, onto her chest, and back. My PCP told me, “If she was MY patient, I’d tell you to leave here and immediately go to the ER.” So to the ER we went.

After waiting 4 hours, we finally got a room and they immediately wanted a urine sample. My boyfriend and I held our daughter still so they could do a catheter. No urine came out of the catheter. They taped a U-bag to her labia, told us to wait until she peed so they could test the urine. I repeatedly requested someone to take her blood to get tested while we were waiting for urine. I was told that there was no one on shift that was comfortable taking blood on a toddler.

Around 10pm, I went to check the diaper and bag, and the taped bag had failed to catch the urine. At this point, we are exhausted and wanting to go home. I pulled a nurse aside in the hallway and quite rudely demand, “I’ve asked for someone to take her blood for 7 hours now. You guys aren’t getting a urine sample, so give up on it. Either take her blood NOW, or discharge us NOW so I can take her somewhere that WILL take her blood.” Within 15 minutes, someone was in there taking her blood. About 20 minutes after that, a nurse came in and said, “Her counts are elevated, so we’re calling an ambulance to transfer her to Doernbecher Children’s Hospital at OHSU.” ANOTHER 2 HOURS go by while waiting for an ambulance (I even stated that we could’ve gone home and driven ourselves by the time the ambulance arrived).

We got to DCH at 3am on 10-8-22, got the official diagnosis as 3:30, talked to the doctor until 5am, and were expected to be up and ready for rounds at 7:30 am.

She was scheduled to get her port placement, spinal tap, bone marrow biopsy, and the first dose of chemo on 10/11/22. The night before, she started having one of her episodes, the first time any medical professional got to see her fever episode as it was happening! She was given an emergency blood transfusion, and her entire bed had ice packs all over it, trying to help her body fight the 104 fever. She woke up fine the next morning and was still wheeled in for her port surgery.

The placement went smoothly, and she woke up from anesthesia without issue, something I was concerned about, due to my own issues with anesthesia. The rest of the day, she was in the best, happiest mood that she had been in for 4 months! She was finally getting medicine that helped her feel better!

On her discharge day (10-15-22) she received her first dose of PEG, and we were prepared with Epi-Pens and Benadryl. The side effects and possible allergic reactions to the medication made us wary of trying it in the first place. But all seemed well, so we finally got to go home!

One thing I wish I demanded before we left was the loose gameplan. I didn’t know any of the words of treatment until January 1! I had no idea what induction, consolidation, maintenance, delayed intensification, or any other phase was until way too late! I couldn’t prepare myself because I didn’t even know what phase we were doing or what medications/schedules it would consist of.

In this traumatizing week, I feel like i didn’t even get any time to talk to my daughter about things that are and would be happening to her. She went from sleeping 12 hours straight every night, never having a sleepover anywhere except her own bed/house…to staying in the hospital for a week, constantly getting poked and woken up all night long, and dealing with non-stop doctors.

The kid she was when we got home was SO different, scarred, anxious, timid, stoic. She was a shell of a person, scared of absolutely everything and everyone. On top of those big, new, scary emotions…she was complaining about tummy pain. I tried to explain nausea to her, but she was adamant it was “owies” and not “sickies.” So after she stopped eating, constantly complaining about her stomach, I called up for an “urgent” appointment, where they ended up admitting her for 3 days due to developing pancreatitis. A common side effect from the PEG was pancreatitis, but they seemed confused as why it was a delayed reaction.

Skip forward to 11-29-22 when she was getting her 2nd dose of PEG, and went into anaphylactic shock just 7 minutes into the chemo entering her IV. We were told that PEG is out of the treatment plan, but after trying the medicine replacement, Rylaze. Rylaze was a scheduled shot in the thigh, every other day for 2 weeks. After her 3rd shot, I brought up her insane nausea, asking for more nausea meds as zofran was no longer helping. The doctor on call did more bloodwork and saw that the Rylaze was causing her to develop pancreatitis, as well as an allergic reaction. The shots were immediately taken out of treatment plan, and this concluded the Consolidation phase. We ended up having a 3 week chemo hold due to low ANC immediately after this, but then started Interim Maintenance 1 on 1-24-23.

For her, IM1 phase consists of 4 scheduled hospital admission stays. 1/24-1/30, 2/7-2/12, and the next are 3/7, 3/21. Every other week for 2 months, if she passes counts each week.

For us personally, Billy and I (her dad, my boyfriend) have communicated great, and we’ve been closer than ever. Oaklyn has a giant tribe of people- friends, aunts, uncles, 7 grandparents!

I’ve been a stay-at-home mom since Oaklyn was born (the pandemic happened the weekend that my maternity leave ended), so finances have been extremely tight during diagnosis. It doesn't help that Billy had shoulder surgery in December, and I have my own medical issues and bills that I have to deal with.

But Oaklyn is such a trooper, despite everything that’s happened so far. Luckily, she trusts her dad and I to take care of her and get her help.

Since this was sent to us, Oaklyn has finished her interim maintenance and will be getting a short break before starting her long-term maintenance.

If you want to help out Oaklyn and her family, they have a GoFundMe page. Currently, she does not have a support page set up, but we will post updates as we have them.

We would like to wish Oaklyn continued strength on her journey and hope that the next phase is much easier on her.