Meet Lakelyn Draheim

“On Wednesday, January 5th Lakelyn got home from school and we could not understand her. She was drooling and falling over.

We called the ambulance and went to AGH. After an MRI, we were given the unthinkable news; Lakelyn had a brain tumor. Brain cancer was the given diagnosis by the ER doctor. We were transported by ambulance to DC Children’s Hospital immediately. Upon arrival, we were told that Lakelyn had an inoperable tumor in the center of her brain stem and that we would need a biopsy to determine how bad it was. Then we prepared for the biopsy procedure on January 7th. On January 12th we got the news that no parent wants to hear, that we’re facing the unthinkable. Lakelyn has DIPG Grade 4 with H3K27M mutation.

Our only option for radiation was for one of us to move up to DC meaning we would be away from family, friends, and our support system.  We learned that there are many options for treatment, however, none are proven. We faced debilitating news with tears of heartbreak and sorrow, looking at our precious baby with her pigtail braids and beautiful hazel eyes begging to go to dance class. How can anyone survive this pain? 

On January 27th Lakelyn rocked her first radiation session and never moved a muscle. She loved the hot pink lasers in the machine and her unicorn mask! She even loved the nausea meds that melted in her mouth and tasted like raspberries! When she was finished, she said “Mom! I did it!” 

On March 9th Lakelyn accomplished something truly amazing! 30 rounds of radiation WITHOUT sedation! For a 4-year-old, that is unbelievable. She is truly a warrior. While we were super excited to go home, it was also a sad day. A day when we have to say goodbye to our daily routine surrounded by amazing people. It is also a sad day because going to treatment every day felt like medicine. It gave us the feeling of relief that we were doing something to help. Now we go home and wait until the next treatment and try to enjoy every moment, even though we know it is not done.

On March 24th we had a positive visit to DC. Dr. Packer was IMPRESSED with Lakelyn!! We were informed that we could continue weaning steroids. If we can wean successfully, we can begin the REMIND trial, if not we will need to enroll in UCSF PNOC 022 in California. At this point, we had a plan… and a backup plan, which was encouraging!

On March 28th, 2022, we rushed Lakelyn to PRMC due to a decline in function and severe lethargy, headache, and vomiting. We found out that she has hydrocephalus (water on the brain). We were told we were going to be flown to DC by helicopter. We got in the helicopter and made it about 15 minutes before the pilot said that engine #1 light was on and he needed to make an emergency landing in Cambridge. This was horrifying, to say the least. The winds were so strong and we were in a broken helicopter. Thank the Lord we landed and when we hit land, the pilot let out a huge breath. Upon arrival, they determined Lakelyn would need a shunt which would require surgery at 10:00 am the following morning. The shunt required 3 incisions: head, neck, and stomach. This diverts the spinal fluid from the brain to the stomach and helped her feel a LOT better! On March 30th We had a fast MRI and X-ray and everything with the shunt looked perfect. The ventricles were already smaller and swelling had decreased. The whole time we were in the hospital Lakelyn was worried about the camping trip we had planned for the following weekend, and if she would still be able to go. We finally broke out of the hospital and were able to deliver on our promise to take Lakelyn camping after a long stressful week! She’s very excited!”