Here’s the thing about childhood cancer…just when you think you might be getting the upper hand, cancer comes right back to punch you square in the mouth. Throughout Megan’s 7 year journey with childhood cancer, this has happened to her too many times to count. After 6 relapses, over 140 weeks of chemotherapy, 200 radiation treatments, and now a seventh surgery, Megan is far too familiar with this routine. A lesson we have also learned is that when fighting childhood cancer, it is often not the cancer itself that causes the most damage but instead the treatments for the cancer. When Megan has been hospitalized, it has not been because of damage caused by the cancer, but instead it has been the effects of the archaic treatments our country still uses to treat childhood cancer. Whether it be an ICU stay for sepsis, removal of her gall bladder, hospitalization for low blood counts, infections from those same low blood counts, or her most recent CSF leak, it’s the treatments for childhood cancer that are so cruel. Megan has once again found that out the hard way over the past two weeks.
On Monday, October 11, Megan noticed a clear liquid dripping from her nose and when she laid down she felt it draining down the right side of her throat. It wasn’t long after that she started experiencing debilitating headaches, neck pain and nausea…especially when she sat up or stood up. When we called her oncologist, he wanted her admitted in-patient at CDH immediately for testing. On the ride to the hospital, Megan’s nausea was uncontrollable so when she got there, the nurses were waiting with medications to assist her nausea and pain. After multiple tests, she was diagnosed with a CSF leak accompanied by 3 forms of meningitis (none were contagious). Given the emergent nature of her issues, they transferred her to Northwestern in Chicago at 1:30 a.m. on Saturday morning.
After involvement from the neurology, ENT, and infectious disease departments at Northwestern, the decision was made to airlift her to UPMC in Pittsburgh where they specialize in these types of issues. At about 1:00 p.m. on Sunday, Megan was taken by helicopter from Northwestern to UPMC where Deb had already taken an earlier flight to meet her at the ICU. As soon as Megan took off, I took a flight to UPMC as well (thanks to Makenna Emerson and Ryan Horrie for the ride to the airport).
When we got to UPMC, her pain was immediately taken care of, which was such a blessing. Severe headaches, neck pain and nausea are symptoms of both a CSF leak and meningitis, so the combination really had Megan in severe pain. At this point, being heavily sedated was the best option. The team at UPMC jumped into action quickly as they ran multiple tests and worked to get her body to start reacting to the antibiotics for meningitis. They wanted to see her body start to react positively before jumping into another surgery. As a result, surgery was scheduled for Wednesday morning.
Due to the large doses of radiation Megan had already received in the area at the base of her skull, the scans showed large amounts of “gray tissue”, which means much of the tissue in that area had no blood flow. As a result, to fix this CSF leak, the surgical team would need to harvest tissue from Megan’s scalp that had it’s own blood flow and feed it through her temporal lobe to patch the leak. Her doctors explained to Megan that this would mean a large incision on her scalp, but Megan seemed unfazed and gave her surgeon a fist bump as she prepared for the surgery. At 7:30 a.m. on Wednesday morning they took her to surgery while Deb and I anxiously waited in the surgical waiting room. At about 3:30 p.m., her surgeon came out to see us and said things went well. He wanted to keep her under anesthesia so they could get an MRI, but then she would be up in ICU. It was about 8:00 p.m. before we actually got to see her. Other than looking like she had been in a car accident, she came out of the surgery well. Her vital signs were all stable and pain management was working, so now she started the long road back to recover. Seeing your child come out of surgery with a breathing tube, a feeding tube in her nose, a large incision on her scalp, and so many IV lines was a jolt to my system. As a parent, nothing prepares you for that moment and it took me a minute to collect myself. These are the moments I am so glad her mother is here, because she is so much stronger than me during the tough times.
Megan currently has a feeding tube through her nose to make sure her body is getting enough protein to aide recovery at the surgical site. She also has a large horseshoe shaped incision on her head where they harvested the tissue. Megan hasn’t seen her incision yet, but I am confident that given her past history, she will wear it as a badge of honor. Yesterday, they started to remove a couple of the many IV lines she has, but since she is still receiving six different antibiotics for meningitis, she still has a lot of lines coming into her body. The infectious disease doctors are encouraged because Megan’s white count is way down which shows that her body is responding to the antibiotics. As most people know, meningitis is a very dangerous form of infection…especially the fungal meningitis, which is one of the three forms of the infection Megan has, so the fact that she is responding to treatment is huge. As her surgeon said, he is much more concerned about her meningitis that he was fixing the CSF leak.
Other than spiking some high fevers at night and some recurring bouts with nausea, Megan is making slow and steady progress. She is communicating better now and although she remains in a prone position, she is becoming more active. She told her nurse today that she wants PT to come because she wants to get out of bed. As usual, everyone is amazed at Megan’s pain tolerance, her determination to get better, and of course her kind heart. When her neurosurgeon came to see her on Friday morning, he gave her a quick check while she was pretty much out of it. When he finished, he asked her if she had any questions and she softly said, “Thank you.” It melted my heart.
On Tuesday, Kenzi and Makenna Emerson made the 8 hour drive here to come and be with Megan and to bring us our car. It was so kind of Makenna to ride with Kenzi, because this situation has been very hard on her. People forget how hard the childhood cancer battle is for siblings. Sometimes I think they are the forgotten victims in the childhood cancer journey. I was comforted knowing Makenna would be with Kenzi for company and emotional support during that long drive. It was so good to have them both here as they were a welcome diversion for Megan, as well as Deb and I. Kenzi was by Megan’s bedside the night prior to her going to surgery, which I know made Megan feel better.
After surgery, Kenzi brought Megan a little University of Pittsburgh stuffed animal, which was the first time we saw Megan smile post-surgery.
It seemed Megan was at her happiest when Kenzi and Makenna were around.
At this point, we don’t know how long Megan will be in the hospital. We also know that once she is released, she will need to stay in Pittsburgh for a period of time as she will need daily antibiotic infusions to treat meningitis. We also know that given her past history, her neurosurgeon and ENT will want her to stay in Pittsburgh for a period of time for close monitoring. There are so many unknowns for our family right now that include not knowing how long we will be here; finding housing that will accommodate Megan’s needs; getting Kenzi back to school in Madison so she doesn’t fall behind; our work responsibilities; and keeping the house up in Coal City (which has made made so much easier by our awesome neighbors and Jack Micetich). However, we know that all of these issues will work themselves out, because the primary focus is getting Megan better again and back to the comforts of home and her beloved pets.
I have spoken many times of Megan’s drive and determination, but I have never seen those traits on display as strongly as I have the past two weeks. Even though Megan was sedated due to extreme pain, she was fully cognizant of what she was in for with yet another endonasal surgery, because she has been there, done that. She knew she would come out of surgery in even more pain. She knew she was going to have a large incision on her head. She knew that she was going to be in for another long stay in the hospital. And she knew that it would be a long time before she could come home again. Yet through all that, there was never a doubt in her mind about going through with this surgery. There was never a thought of waving the white towel and saying enough is enough. Over the past seven years she has been through more than a lifetime of mental and physical pain and suffering, but she just refuses to quit. Stage 4 alveolar rhabdomyosarcoma couldn’t stop her. Sepsis couldn’t stop her. Six relapses couldn’t stop her. The brutal side effects of 140+ weeks of chemotherapy and 200 radiation treatments couldn’t stop her. Seven surgeries couldn’t stop her. And now a CSF leak and meningitis can’t break her will. I am more convinced than ever that if anyone can beat this vicious disease, it’s Megan.
Thank you so much to everyone who has reached out to our family offering assistance and support. Also, thank you to everyone on Team Megan for your kind thoughts and prayers for her during this trying time. I know she feels your support. Finally, thank you to everyone who has reached out to Megan directly via text and social media. She has been unable to respond yet as she is not strong enough to use her phone, but please know she will get back with you as soon as she is able. It is times like this that our family is so thankful for family, friends, and the kindness of so many of you. It is these moments that reinforce my faith in the inherent good of humanity. We are blessed.
Until next week…and let’s hope we soon get back to seeing Megan like this.