After meeting with Dr. Stevenson we decided to move forward with allowing a biopsy of LJ’s tumor. It was official, LJ was going to have brain surgery. They would make a cut in the back of his head, take a piece of his skull out, insert a very long needle while dodging good brain tissue, and take samples of his tumor. It was risky, but we needed to know what made up this tumor in order to attack it. Different medicines are created for different types of “markers” in the stains of cancers cells. There was also a chance that we could biopsy this thing and it wouldn’t be DIPG, maybe a more treatable brain cancer, of course we hoped and prayed for that. LJ wasn’t even three when he was first diagnosed and for DIPG that is rare. The kids are pretty consistently 5-11 years old. There are younger and older outliers but they are definitely not the average. Another factor in our decision to biopsy was the access to clinical trials. Some trials were set for certain markers and some required a biopsy prior to eligibility for the trail. Lastly, the findings in LJ’s tumor could provide researchers with information that could eventually lead to a cure. This alone was reason to biopsy. At the time we believed we had a year or less with him, why wouldn’t we allow researchers to use his tumor to seek a cure?
We moved forward and schedule his surgery date for March 23rd. That big scary appointment was such a glimmer of hope for us. We were told a month ago that none of this was possible. There was no treatment (besides radiation) for LJ and they definitely weren’t doing biopsies on this tumor. None of which is true, it takes a skilled surgeon for sure and Cincinnati Children’s has only been doing it for about 5 years but it was being done. LJ was getting the opportunity to have a biopsy, we were going to get to look at the insides of the monster in our little boy’s head so we could fight it with everything we could! We were in awe as we were watching God begin to orchestrate every little detail.
Before the biopsy, our really great friends Deanna and Jaden drove down for a few days while visiting family in Michigan. They were going to help keep Em and Nana company while Joshua and I stayed overnight at the hospital.
The morning of the biopsy we took our precious little fasted boy (read hungry little beast) to the hospital. We sat nervously in the pre-op room and waited while they prepped. So many different doctors and nurses came in, including imaging because they would be doing an MRI the duration of the surgery to make sure everything was going smoothly and they were getting solid samples. While we were waiting we recorded LJ saying “I love you” I knew in my heart the risks of this biopsy and wanted to have a video of him saying those words if he came out of the surgery with new challenges or if he did not come out of surgery at all.
We put our boy in the hands of one of the best pediatric neurosurgeons in the nation and ultimately God and walked out as our boy slept sweetly on the operating table. We made our way to a pretty full waiting room. I sat wondering what types of surgeries the other parents were waiting on. Was there another family waiting on brain surgery, or were we the only ones? We had yet to meet another brain cancer family and I longed for someone to talk to that understood what we were going through.
LJ’s surgery was going to take a while and we were exhausted. A really funny memory was Joshua and I stalking these comfy, recliner type, chairs and just waiting for the people in them to leave so we could scoop them up! I am so grateful we did! We were comfy cozy the rest of our wait time and only one of us at a time would get up to hear updates about LJ so we could hold our chairs. Ha! Any parent, or anyone for that matter understands the importance of a comfortable chair in a hospital waiting room setting.
While sitting in these comfy chairs, a woman walked up and asked if we had heard about the Concierge Services that the hospital provided. We had not, and she began to explain this wonderful program! Basically they “Care for you, while you care for others” and take care of things you may need while you are impatient or in clinic at the Children’s hospital. They will buy your groceries for you and bring them to the hospital. They have co-op services for fresh fruits and veggies, they’ll run errands, get your oil changed. They have postage notary, laundry services, and so much more. They also have meal cards for sell, for $6 you can buy a meal card and order a meal for yourself to your child’s room. This saves so much money compared to eating from the cafeteria and you don’t have to leave your kids room to go get food in the first place. Such an incredible program for families with very long impatient stays.
The best part about this woman was her son had brain cancer. He was diagnosed years ago and was about to graduate chiropractor school. She had been given the same prognosis about her son as us and her boy was a walking miracle. It was so encouraging. She was the first person we had met that had been in our shoes and it was such a relief to know that someone else got it. She talked to us for a while about diet and treatment options and fighting for your kids. Her presence in that waiting room was an absolute gift from God.
Finally we were called by the surgeon and he told us that everything went phenomenal. They got all the samples they needed, LJ was perfect and we could go back to recovery soon! The surgery was about seven hours and we were so eager to see our boy! When we got to him in recovery he was very loopy, annoyed by his oxygen tubes, and had pokes from a skull fixation device machine on his head. I was so fixated on the little pokes on his head because I wasn’t told that they would be there when we saw him again and I am a parent who likes to be informed about everything!
He was just perfect though and it was time for snuggles!
Because he had brain surgery they put him on a Dexamethasone regimen. It’s a steroid that helps with brain swelling. It’s also a steroid…we had a little hangry baby on our hands and it was so late at night. They brought him Cheerios and that kid ate every Cheerios box on the floor at the hospital!
Joshua and I got comfy cozy on the little chair in the PICU for a little while until LJ needed one of us to “sleep” with him all night long. We really didn’t sleep though, they had to check on him often that first night.
We moved over to a regular floor the next morning and LJ got a full meal. He ate and ate most of that first day and watched movies. I can’t tell you how many times we watched the Lego Movie and Moana.
The second and final morning he woke up ready to play! We impatiently waited to be discharged while we took some trips in the wheel chair and and even cut his hair with the help of the neurosurgeon fellow (a neurosurgeon in training). I wanted him to go home with a semi normal hair cut so Em’s didn’t react so much to the incision. He was perfect and normal! LJ had made it through the biopsy with zero side affects and we couldn’t be more thankful!
We left the hospital on March 25th. LJ had his first inpatient stay as a cancer warrior.