Like most Moms, I started Monday, December 5th , 2016 after a weekend birthday party for one of my two children a little exhausted. More tired than a normal as we had been worried about our two year old daughter, Teagan (aka “Sweet Tea”) , who had been puking up bile in her crib during the night now for almost four weeks. During the day she would rally and eat and play like a normal two year old but the puking would not subside during the night. The doctor’s office thought at first it was nasal drip and then two weeks later thought it might be acid reflux.
Finally after being exhausted from showering her two to three times a day and changing sheets every day, I took her in again to the Doctor on the morning of Teagan’s birthday party. I was not able to see our regular Doctor because it was Sunday but this Doctor said she is not sure what may be going on but asked when we follow up with our regular Pediatrician. I let her know we would see her in a week and she said to make sure we follow up with this appointment as we need to give more time for the acid reflux medicine to work. As we packed up our stuff to leave the doctor’s room, this Doctor informed me that sometimes when there is puking and loss of balance this can sometimes indicate a brain tumor. Of course this made every hair on the back of my neck go up. I asked her quite directly why she was telling me this. She got a little defensive and just said that is it very unlikely but she just felt the need to make sure to tell me all scenarios. I left the office a little perturbed because I did not understand why this Doctor was telling me about a brain tumor when she said it was highly unlikely.
Following the doctor’s visit, we came home and had Teagan’s 2nd birthday party. It was Teagan’s favorite at the time, Elmo theme. It was a small family party at our house and Teagan did a great job keeping up with her party. Others noticed she was more clingy than normal and did not have as much energy. Typical Teagan was determined enough though to eat her birthday lunch and blow out her candles. Towards the end of the party though she began throwing up her food. She continued to just lay on my shoulder following and did not want to play the rest of the night. We put her to bed early and at 2am we heard her puking up bile again in her crib. We cleaned her up and then put her back to bed. I laid back in bed and could not get the “brain tumor” conversation out of my head. I could not sleep so I emailed our pediatrician in the middle of the night with my continuing concern.
I woke up the next morning and headed into work. Sleepy and a little worried but figured we would figure this out eventually. An hour after getting to work, I got a phone call from Cathy, our pediatrician. She had read my email from early this morning and urged me to take Teagan to Seattle Children’s Emergency Room. I dropped everything and came home to get Teagan and my husband and headed to the hospital. Thank goodness my husband was home to go with us. I was going to just take her myself, but we decided to both take her there given she was now throwing up anything and everything we tried to give her.
We drove to Seattle Children’s the morning of December 5th and they got us right into an ER room. As any Mother walking their baby into ER would be, I was on the verge of tears. Once they sat down with us and I explained her symptoms I began to cry. I knew there was something not right. The ER doctor who I will never forget says to us, “ER doctors always have to think worse case scenario. Kids who are puking and have loss of balance sometimes can have brain tumors. We as ER doctors always think worse case scenarios. We are going to take a CT scan of her head and then will be able to let you know the results in 45 minutes.” I continued to cry and Jeff carried the conversation. This was now the second time I had heard “brain tumor” from a doctor about my baby.
We took Teagan for the CT scan and she did great as she was very lethargic. We were told we would need to wait 45 minutes but within 10 minutes the ER doctor and another nurse came in to our ER room. We both knew it was not good news. The ER Doctor had in his hand a photo copy of her CT scan which showed a large brain tumor covering the entire back of her head which spanned her entire brain stem. We were in shock.
That afternoon the surgeons at Seattle Children’s operated to relieve pressure on the brain. Before doing so, they talked with us and warned us that this operation has the potential to cause blindness for Teagan if the pressure in her head releases too quickly. We signed the consent acknowledging this and thankfully the stint was installed and relieved pressure in her brain without causing blindness. Teagan was a champ and after getting rid of that headache she was smiling and laughing. While she was still under anesthesia, she had an MRI which provided helpful information for the surgery.
The next day, Tuesday (12/6), one of the nation’s premier pediatric neurosurgeons, Dr. Ellenbogen, led the 9.5 hour surgery to remove the malignant tumor. I have never waited so long in my life. Jeff and I sat in this small room not knowing what to do or think just waiting for hours. Surgery finished at 11pm and Teagan was able to rest peacefully in the intensive care unit with the help of a breathing machine over night. The procedure was most scary because of the location of the tumor which touched and spanned the entire brain stem. The doctors had prepared us for all possible outcomes (death, paralysis, blindness, etc). Following surgery, Dr. Ellenbogen came out and spoke with us. He informed us that they were able to take the entire tumor out (full resection) and that the tumor was cancerous. He said it was most likely either Medulloblastoma or Primitive Neuroectodermal tumor (Pnet). He told us our daughter had less that a month to live if they had not removed her brain tumor as she would have likely stroked and died.
We both sat with her through the night and into the next day, not knowing if she would be able to move her limbs, see or breathe on her own again but just thankful she was still alive. Teagan woke the next morning but was not moving the right side of her body. That morning they took her to get an MRI very early in the morning. They didn’t tell us at the time but they were worried she had stroked and lost usage of her right side of her body. Thankfully after the MRI results came back they explained they were not sure why she wasn’t moving her right side of the body as it could have been that she was overmedicated so she wouldn’t pull the breathing tube out of her mouth overnight or it could have been from the fact that the tumor was situated on the right side of her brain which possibly could have had this impact on her right side of her body. They told us she has ataxia (tremors) on her right side of her body but that this should improve with time though never go away completely.
The following day, Thursday (12/8), Teagan reached our her arms for the first time in two days and looked at me and said, “Momma”! My heart felt like it was rescued and the relief we both felt was intense (in a good way). Later that week we met with our new oncologist, Dr. Geyer, and the two Nurse Practitioners on the brain tumor team to learn more about what was to come. We found out it would take until early the following week to find out the official type of cancer. They told us Teagan will have 6 months of chemotherapy with an additional 6 weeks of radiation at the end. They asked us if we would be ready to start chemo before Christmas and we found out that technically she could start the day after Christmas and still be in the correct time window of receiving treatment. We decided to start her chemo on December 26th, the day after Christmas.
We stayed inpatient for three weeks after her surgery as they slowly turned the drain down to see if her brain could reabsorb the cerebral spinal fluid. We quickly learned that Teagan could no longer walk on her own after surgery. They told us they are hopeful she will be able to learn again but did not give any false promises as they said we will have to wait and see if she is able to walk again. She also was having inconsolable fits due to the brain surgery in addition to all the steroids she was receiving to keep the swelling in the brain down. They called this Posterior Fossa Syndrome. They gave her heavy pain medications to help stop or minimize these fits as they would go on for hours with nothing anyone could do to console her.
Thankfully turning down the drain appeared to be working and they were able to take out the tube in her head to try and allow her brain to drain on her own. We were finally allowed to go home. Within two weeks she began to show signs of discomfort where she was screaming, puking, and inconsolable. Very early one morning, Teagan woke up puking so we brought her into the clinic that morning. By the time we were able to see a doctor, Teagan was still breathing but was no longer moving her limbs or responding. They diagnosed Teagan with Hydrocephalus. Hydrocephalus is a condition where there is an accumulation of cerebral spinal fluid in the brain. Without treatment, which is shunt placement for this condition, death can occur. As Teagan was not responding they scheduled an emergency surgery to put in a shunt to allow the cerebral spinal fluid to leave the brain. Thankfully they were able to schedule both her shunt and double Hickman catheter surgery under the same anesthesia. Teagan received a double Hickman catheter line which is a long thin tube which was inserted into her vein in her chest. It allowed Teagan to receive her chemotherapy drugs as well as blood draws out of these lines so she did not have to be poked multiple times on a daily basis for months.
Chemotherapy spanned a 6 month time period from December 26th and her last dose of chemotherapy was administered on Mother’s day on May 14, 2017. Teagan’s chemotherapy included 6 rounds of chemotherapy inpatient stays of 5-9 days. Teagan had a plethora of chemo drugs administered to her through these six months. The first half of her chemotherapy was three rounds and she was given the same drugs for all three rounds. The second half, three additional rounds, she was given was a whole new set of chemo drugs.
I am not sure how better to put this but chemotherapy was a long and extremely rough journey. Little did we know but as we walked in to start round one of chemotherapy our daughter had somehow caught Norovirus (extreme vomiting and diarrhea). As we walked into the hospital, she began to vomit. This vomiting and diarrhea did not end for the next three weeks while in the hospital. I remember clearly wondering to myself how we were going to make it through six months of this imagining every round to be this difficult.
We soon learned that the inpatient chemotherapy stays were the most predictable parts of our life. It was when we went home and waited for the next 7-10 days while her immune system disappeared and we cautiously checked her temperature regularly to see if any infections were brewing that was most difficult. Hour to hour we did not know whether we would go to sleep and sleep at home that night or if we would need to go to ER in the middle of the night. There were many a night were Teagan would wake up puking and we often had to go to ER to see whether this was her shunt or chemotherapy side effects.
The hardest part about the chemotherapy was in between her treatments where her immune system would “tank” and she have no absolute neutrophil count (the white blood cells that fight against infection). During this time we could not have Teagan around any other children and had to stay at home away from any other potential germs. At times, we had to keep her and her brother apart in the house if he had a cold in an effort to try and not spread germs.
Throughout Teagan’s chemotherapy she got the Norovirus twice, Respiratory Synctial Virus (RSV) once with temps reaching 105, Clostridium difficile (c-diff) which is extremely stinky and fierce diarrhea, mucositis (painful inflammation and ulceration of the mucous membranes lining the digestive tract), and the hives. In addition, her shunt was adjusted in December as the Norovirus symptoms appeared as if her shunt was not allowing enough cerebral spinal fluid out of her ventricles in her head so they opened up the drain to allow for more drainage. Four months later as we lay next to Teagan when she did not wake up and slept for three days straight, we found out her shunt was over draining. I remember staring out the window wondering if we were going to lose our baby at this point as her eyes had gone crossed, she was not talking, she was not eating, she was not moving her limbs, and she would only lay flat. The Oncologists were questioning the shunt and the Neurologist were questioning the side effects of chemotherapy and no one could quite figure it out.
We finally were able to take her home after she was able to keep down a little fluids and food. She came home and immediately continued to lay flat for the entire day on the floor. I stared and began praying as I was beside myself wondering if we would get our baby back. My husband spent hours researching on the internet. He figured out from two studies he found that her shunt was likely over draining. We called our Neuro-Oncology Nurse, Casey, that day and we were able to get her in to adjust the shunt and close it back up to 1.0. Exactly 24 hours later, Teagan’s eyes uncrossed, she began to talk, she wanted to walk, and she came back to us. It was truly amazing to watch this unfold she was getting plateletts in clinic.
Teagan’s last round of chemotherapy she was able to not return for an inpatient hospitalization despite catching c-diff diarrhea and the Corona virus (cold) without an immune system. This was truly miraculous! Teagan got three weeks off before beginning 6 weeks of proton radiation where she was put under anesthesia every day for 6 weeks straight for a total of 30 sessions. The reason she was put under anesthesia was so she could stay completely still while under the 196 ton “rocket ship” Proton machine while it meticulously delivered protons to the back of her head where the tumor bed was prior to when they removed it.
Unfortunately, 3 months after receiving proton radiation, Teagan got radiation necrosis (side effect of proton radiation). She had been working hard at learning to walk again but slowly she was losing the ability to stand, could not walk, her eyes crossed, and she was not able to talk. The necrosis was next to her brain stem, so we now had an additional potentially terminal diagnosis added to her plate. Thankfully they treated her with Avastin and Dex at Seattle Children’s hospital immediately and it stopped the spread of necrosis for the time being, but she still had lost a lot of her gross and fine motor skills as well as speech.
We searched the country for additional healing treatments and thankfully found pressurized hyperbaric oxygen therapy at Rocky Mountain Children’s Hospital in Denver, Colorado. We moved to Denver for 2 months where she received daily treatments in the hyperbaric oxygen chamber and began seeing immediate healing.
Since moving back Teagan continues to receive physical therapy, occupational therapy, speech therapy, neuro acupuncture, hippotherapy (horse therapy), and neurofeedback. We do everything we can to help aid healing in her brain. She is an incredibly loving and happy child. We are so grateful to have our daughter still with us and every day we are grateful to have our family together. We have learned that finding a cure is not just about finding the right medicines but also includes an incredible amount of care coordination to increase the quality of life for our daughter. We are incredibly hopeful but also acknowledge the reality of how much our typical developing two year old daughter’s life has been changed forever. We value connecting with other families who have been through a similar journey and support #cureMedullo in their efforts to advocate and spread awareness for others about Medulloblastoma.