Radiation Complete-What the future holds-July 28, 2017

Teagan completed her 30th session of radiation today! We are so grateful for this chapter of treatment to end. She handled radiation great though she experienced some nausea last weekend where she threw up 8-10 times for the first part of Sunday, but then with the help of two anti-nausea meds we were able to reel it in and she was able to continue to keep food and liquids down. This week she is showing increasing tiredness, but at the same time she is continuing to try and walk and practicing her squat stands beautifully. We are so grateful her body will now get to rest, recover, and build strength after 8 incredibly long months of combined chemotherapy and radiation on her little body. Teagan is one tough cookie we have learned through this! We are most hopeful she will learn to walk again, but continue to work with her towards this goal. Her words are continuing to explode, and her cognitive abilities always continue to impress us.

We are oh so hopeful but also realistic that we have a long and unknown journey ahead of us which will include scans every 3 months for the first two years, every 6 months for the following 10 years, and possibly scans yearly into her 20's. We will be overjoyed to have her alive and scanned and are willing to live with what we have learned is called "scan-anxiety" that exists leading up to her scans which will determine if there is an "evidence of disease" (aka cancer has returned).

Teagan will continue her physical therapy, occupational therapy, and speech therapy as long as needed. We hope to qualify her for special needs preschool which she would start after her birthday in December, allowing her an additional year of preschool "aka early intervention".  The hope after that would be to put her into a "mainstream" preschool the following year. All the therapists stress to us the importance of early intervention and we believe at this point this will assist her best, but are open to learning more options along the way.

In terms of what we know now, August 10th Teagan will get her double Hickman lines removed from her chest which means we can go back to taking baths again! I am so excited about this as sponge baths for 8 months have gotten really, really, old.  On August 17th, she will have her end of treatment meeting where we learn about all the side effects we need to be looking for throughout her life from the treatments she has received. Our Pediatrician, who we LOVE, will get to join us for this meeting which I am so thankful for. Then on August 25th will be her next scan to check for any evidence of disease. From here on out, the scans will continue every 3 months for the first two years, etc.

We are so incredibly thankful for all of you who have been reading Teagan's updates and for all of your support along the way! Jeff and I are often talking about how we can ever pay our thanks back to you all and are still trying to come up with ideas knowing we received so much support, that it may take years to thank you all in a meaningful way. I can say I have gained an amazing glimpse at humanity through all of this. Despite what has happened to us, I believe the world is a great place and I believe there are so many amazingly nice and gracious people out there. I can say I never realized how many caring people are out there and we are so thankful for you all. This world is such a great place and we have so much to be thankful for. I also must make sure to thank my big sister, Meg, who was so gracious to write some of our updates for us throughout this, much better than I could have ever written them, and much more frequent than I likely could have during this whole process.

Rocket Ship-July 2, 2017

Below written by my big sister, Meghan.

“Rocket Ship! Rocket Ship! Rocket Ship!” Teagan yells with excitement as they take her into the room with the 196-ton cancer killing radiation machine. The radiology team does such an amazing job of framing treatment that the kids love it! From the magic white juice (anesthesia) to the rocket ship machine (!) to the personal music selections they play over the speakers (Teagan chooses Frozen), radiation treatment is f.u.n. for the little ones. One mom recently made the mistake of letting her kid have a cracker telling the radiation team that her kid had consumed a cracker and they cancelled his treatment. This of course led to a meltdown for the boy who was denied the magic juice and a trip in the rocket ship. Earlier this week Teagan was ready for radiation before her team had the machine ready. So naturally she screams, “I’m ready! I’m ready! I’m ready!” As the team responds, “We’re hurrying Teagan” they also scramble to get her Frozen music playing before the anesthesia kicks in. “I’m ready! Frozen!”

And while radiation is a blast for the little ones, it is not so for the parents. Teagan’s care team is honest and blunt with Tate and Jeff. The radiologist shared that radiation with kids under 10 years of age likely creates learning disorders. “I walk in everyday to save her life, but also potentially creating a learning disorder. S#!& that sucks.” I called Tate at the perfect time on Friday as she was driving home from Teagan’s treatment. With no interruptions and nothing to ‘do,’ Tate could just talk.

We’re now half way through with radiation, which is great. But it’s also means that we have to face what is next…Cancer is just so pervasive…For so long now I have just been looking forward to treatment being over and this all being over, so we can just get back to being a normal family. But I’m realizing that it will never be over. There will be side-effects and they will possibly keep coming. And it will never be ‘normal’ again. It’s such a harsh reality. The care team is advising me about all the supports that I need to put in place now –emotional supports for both kids, cancer camps for kids and siblings, and all of the other obvious therapies (occupational, speech, physical). This of course has had an effect on Judd as well as he is experiencing stress from all this and his sister getting more attention. He has been having an upset tummy and has been puking on and off with no fevers for the last couple months. He has been put on acid reflux medicine which is likely caused by his stress belly. We’re going to do everything we can to give them ‘normal’ lives, but the reality is that it won’t ever be the same as it was…This week she has taken off – she is walking, squat to stand, holding walls going downstairs. She is speaking incomplete sentences. These are all amazing and make me so happy. But there is also fear. I know, we have to take it one day at a time. And I really hope she’s fine. And I do believe in miracles. But we also must acknowledge the harsh reality.

Intermittently as Tate shares this with me she is crying and laughing. Teagan interrupts her mom’s monologue with a scream for “Pizza!” followed by tears when Tate is unable to produce the desired pizza while traveling down the highway at 65 mph. Laughing, Tate continues:

I love it when she cries. It makes me happy that she is acting like a ‘normal’ 2-year old. She’s tired and she’s hungry. And she’s sick. She got rhinovirus (a type of cold) from Judd and her C-diff (diarrhea) came back. So, she’s in complete isolation – both viral and contact isolation. And she’s really doing great (laughing) – listen to me – she’s undergoing radiation treatment and in full isolation – and I say she’s great. It’s all so relative – she’s alive and not currently puking.

I share these excerpts from my conversation with Tate to provide some insight into the complexity of Fettig family life right now. Yes, Tate absolutely believes in miracles. And yes, Tate is praying and meditating and singing 'Teagan Cancer-free' songs to Teagan each night. And have you seen Jeff? That hilarious, pragmatic man keeps moving forward creating ‘normal’ family memories through all of this – ‘Did anyone say s’mores?’ And Teagan really is doing great.  She is only just now starting to feel tired from the radiation treatments. She is mimicking her brother and dancing like a robot while eating breakfast. And we are all so cautiously optimistic. But at the same, treatment is winding down and the family is facing the harsh reality of what comes next.

Thank you for all of the love and support you have provided this family. Please continue to lift them up in spirit as they finish radiation and move forward as a family.

 

First week of radiation-6/24/17

Teagan has successfully gotten through her first 7 full days of radiation. So far, she is not experiencing any nausea or side effects that we can see, short of her waking up angry sometimes from anesthesia. How long she sleeps after anesthesia determines if she wakes up angry and screaming for donuts (or food). Friday, she woke right away, and the nurse had to take the stroller out to the car for me as I was wrangling Teagan into the car while she screamed "donuts"! Thankfully Teagan has gained back a ton of strength following chemotherapy.

The Radiologist tells us that after two weeks her energy level will likely drop, and we may see other side effects, but we are enjoying every moment right now without such. Teagan's silly personality is radiating and her and her brother are getting to play together for extended amounts of time with both participating in play for the first time in a long while! It is so relieving and healing to see this! I'm always telling Jeff about all the miracles I see and he tells me "everything is a miracle" in your world! I must agree as I am just so thankful for every day I get to be with both kids and they get to play together. Having had our lives change overnight, has me holding on to every moment. I'll take this new appreciation for life as a win-win!

Treatment- Proton Radiation-June 2017

6/1/2017- Teagan got three weeks off, before beginning the next phase of treatment, which is proton radiation.  She will receive radiation daily (Monday through Friday) for 6 weeks.  For each session, the care team will sedate Teagan and then place her on the table so that the 196 ton “rocket ship” Proton machine can meticulously deliver protons to the back of her head, where the tumor bed was prior to when they removed it.  The radiation is actually not painful; she needs to be sedated to make sure that she doesn’t move at all during the treatment. Each session will last about 2 hours, though the radiation treatment is quite short. The extra time is spent making sure the radiation is aimed correctly and waiting for Teagan to wake up from anesthesia.

Teagan’s radiation will be localized to the location of the original tumor. Localized radiation is preferred to the full spinal/cranial radiation she would need to receive were there evidence of disease.  Next week, the radiation team will take measurements to determine the correct angles for aiming the radiation beams and the proper dose of radiation. Teagan will also be fitted with a plastic mask that she will wear during treatments so that the radiation can be aimed more accurately.

The immediate side effects from radiation are much less than those she experienced from chemo. Teagan will likely have low energy and may have trouble walking, but hopefully she will be home every day.   As we’ve learned, plans are always subject to change. But the plan (at least for today) is that Teagan will begin radiation on June 19th.

“TURNING PAIN INTO PURPOSE”-July 2017

During my daughter’s diagnosis and entire treatment stage, we were at the hospital for hours, days, and weeks on end.  We received an immense amount of support from our community of family, friends, and even the skilled and compassionate medical team.  However, it didn’t  take us long to realize that we didn’t know anyone else who was going through what we, unfortunately, were; constantly yearning for another day with our child, praying at night we would get to witness our child grow up; experiencing the full onslaught of emotions of grieving the loss of life we had before and knowing we will never return to that life again; and reverently holding on to the power of hope and the courage to fight with every fabric of our being.

Because of HIPPA regulations and patient confidentiality issues, the doctors and staff legally could not put us in touch with other parents who were also going through our ordeal.   But, when I met two mothers (by happenstance in the pediatric oncology hallways) I knew I was not alone in my journey; that others knew my pain, others could relate to the fight I was fighting (even though they weren’t quite sure how they are making it through, but they were), that others were finding support and staying resilient.  These powerful connections helped me when I was down and lessened the immense amount of suffering which exists daily for these families.  There is something to be said when you connect with someone else in your shoes—it gives you hope.  

Now, I am on a mission to make my nonprofit, healthcare mobile app a reality.  The app will specifically address quality of life and psychosocial issues (e.g., experiential isolation and loneliness) as it serves to decrease suffering and increase hope.  The goal is to connect parents to ensure that bereaved families can remain functional, intact, and connected with other parents who are going through what they are.   When parents are healthy and supported this often can allow them to be more available to their children, which helps promote healing.

I would love for you all to check out this website and contact me if you have any ideas/suggestions/leads you may have, by clicking on the ‘Contact Us’ button in this website. This project has been so energizing for me.  After my kids go down at night, often my brain wants to dwell on all the what if's that lie ahead for us. I realize through this I have no control over whether Teagan's cancer comes back (though I believe it won't), but I also realize this project is something I can have some control over.  It is a dream of mine, that I can create something positive out the immense amount of suffering that exists within my family and for other parents whose children have cancer.

Determination-July 2017

This story is one that I would never wish upon anyone else. Unfortunately, as we came into inpatient we saw all the other families there also getting treatment and going through this.  I can say in my short life I have never seen such intense suffering.  Families walk around the cancer unit trying to be hopeful in every way possible. I will never forget seeing other parents as their child first got admitted and seeing the look in their eyes and the hurt in their hearts for their babies.

Every day I believe my daughter will live.  I believe that her cancer will not come back as there is no point believing anything else or even thinking about it unless it was to return (or so I keep telling myself).  I fight for some control over life internally knowing darn well I don’t have any.  I fight to make something positive out of this journey because I am a fighter.  I am stubborn as hell and if there is one thing that I will not allow happen is for Cancer to get the better of myself or my family.  There is the chance it could take my daughter, but I am determined it will not take myself or my family along with her.  

For hours and days, and weeks, I sat in the hospital with Teagan playing, caring for her, and being there with her. We got our diagnosis at the beginning and then we began the active fight against Teagan’s cancer with chemotherapy.  We received an immense amount of support from our community. My colleagues at work donated an entire year worth of sick leave so that I could be with my daughter and still keep medical coverage for myself. I was offered to be a part of a research study (PRISM) at the hospital which offered basic coping strategies in an effort to help alleviate some of the stress for parents going through this.

NO EVIDENCE OF DISEASE-NED! 5/31/17

Our rock star had a full scan and lumbar puncture yesterday and both results show NO EVIDENCE OF DISEASE! We are all so grateful we are beyond words.  Tonight, we will celebrate Teagan Tough!  We thank you again for all your support. We always welcome all prayers, positive energy, and positive thoughts that Teagan's cancer will never return, and that she will not experience many of the side effects that can come later in life from chemotherapy and radiation. We now have a new appreciation of living every day as if it's our last, and realizing that life is happening right now. We look forward to making the most of life together, as a family, as long as we possibly have time together—along with all of our amazingly supportive family, friends, and supporters we have met along the way! We truly cannot thank each and every one of you enough for your care and support towards us through Sweet Tea's treatment.

Hundreds of Forgettable Wednesdays -April 2017

One of my biggest supporters throughout this journey has been my sister Meghan.  Although more than 3,000 miles separate us, since she is in South Carolina, she is somehow at my side 24/7.  Following is a post she made that touched me to the core.

4/18/2017-I just finished listening to a beautiful, “On Being” podcast with Sheryl Sandberg and Adam Grant, in which psychologist Adam Grant discusses what the data shows in regards to what matters for how much happiness we find in our lives. He describes how it is ‘not actually the big moments that matter most. It’s what Tim Urban, the blogger, says is the joy you find on hundreds of forgettable Wednesdays…it’s actually those daily moments of joy that really matter.’  In reflecting on the tragic loss of her husband, Sheryl Sandberg shared how hard it is to rediscover joy when something horrible happens that turns your life upside down.

Over the past five months I have watched Tate suffer immensely as her life has been turned upside down. Nonetheless, recently I have seen her find joy in the small daily moments. Joy in the cheer that Teagan created to celebrate her last day of round five of chemotherapy (Oh yeah!). Joy in Teagan’s determination to repeatedly remove her annoying feeding tube. Joy in a soft kiss on the cheek before bed. As Sheryl Sandberg says in the podcast, ‘those little moments add up – and not just to moments of happiness, but to strength.

I am amazed at how much more present and more loving my sister has become. And I am not surprised, though still dumbfounded, by her strength.  And, the only thing getting me through this is that I’ve seen her get through this. We ended our conversation last night with Tate sharing that there are three things she is holding on to right now. First, there is always hope. Second, you always have a choice (in your attitude and outlook on a situation). And third, miracles happen. This pithy wisdom humbled me.

To many more (un)forgettable Wednesdays…

January-May 2017 TREATMENT- CHEMOTHERAPY

Chemotherapy spanned over a long 6-month time period from December 26th until her last dose of chemo on Mother’s Day, May 14, 2017. Teagan’s chemotherapy included 6 rounds of chemo, inpatient stays of 5-9 days. I am not sure how better to put this, but chemotherapy was a long and extremely rough journey.  Little did we know, but right from the start Teagan also caught Norovirus (extreme vomiting and diarrhea) that did not end for the next three weeks while in the hospital.  I remember wondering to myself how we were going to make it through 6 months of treatments if they all were going to be this daunting.  However, when Teagan was in her hospital isolation room, wearing her Elsa pajamas, surrounded by her toys and snacks (puffs and goldfish), and mesmerized by watching Frozen, it provided me with deep joy.

We soon learned that the inpatient chemotherapy stays were the most predictable parts of our lives.  It was when we were at home, waiting for the next 7-10 days when things were the most difficult. During these times Teagan’s immune system disappeared, and we had to cautiously check her temperature regularly to see if any infections were brewing.  Confusion set in for us as it was never clear whether Teagan would be okay at night, or if we should get her immediately to the ER, we lived in fear of making the wrong decision.   Many a nights Teagan would wake up puking, so we often had to go to ER to see whether it was her shunt or the chemotherapy side effects. 

The saddest part about the chemotherapy was in between her treatments where her immune system would “tank” and she would 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 (including her brother and best friend Judd) and she had to stay at home away from any other potential 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 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 the doctors opened her 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 and wondering, “are were going to lose our baby at this point, as Teagan’s eyes had gone cross eyed, 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 could take Teagan 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 that day and we could 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.

Teagan finished round five of chemotherapy on April 18th.  She was remarkable during chemo – riding around on her IV pole and making friends. For Teagan’s last round of chemotherapy, on Mother’s Day, she did not have to return for an inpatient hospitalization—despite catching c-diff diarrhea and the Corona virus (cold) without an immune system. How many of us, with our immune systems at full strength, could do the same?

This was truly miraculous! 

DIAGNOSIS-Dec. 2016

12/5/2016-The next morning, shortly after I arrived at work, both sleepy and anxious, I got a call from our Pediatrician who had read my email.  The doctor instructed me to take Teagan to the Seattle Children’s Emergency Room immediately.  I dropped everything and went home to get Teagan and my husband Jeff (who was fortunately at home, since he is often out of town since he is a pilot). 

December 2016

Walking Teagan into the ER room at the hospital, I was on the verge of tears.  And, once I began describing Teagan’s symptoms, the flood gates opened (as they would for any mother).  The ER doctors explained that they always think worse case scenarios.  They told us they would get a CT scan of Teagan’s head, which would yield results in 45 minutes.   My tears wouldn’t stop, so Jeff carried the conversation. Then, what was most scary is that only 10 minutes after the CT scan, two doctors came back to our room—which we assumed meant bad news.  And we were right.  What happened then was even scarier then I even thought possible.  They handed us her CT scan which showed a very large brain tumor covering the entire back of her head which spanned her entire brain stem.  To say we were in shock is an underestimate.

The surgeons at Seattle Children's rallied immediately and performed surgery that afternoon to relieve pressure on Teagan’s brain. We were warned that the operation had the potential to cause blindness, yet thankfully, the surgery went fine.  Teagan was a champ and came out of the surgery smiling and laughing, even with the stint they had to install to help relieve pressure from her brain. While she was still under anesthesia, she had an MRI which provided helpful information for the next surgery. 

12/6/2016-The next day, one of the nation's premier pediatric neurosurgeons, Dr. Ellenbogen, led the 9.5-hour surgery to remove the malignant tumor.  Time moved at a snail’s pace, until finally at 11:00pm Teagan was resting comfortably on a breathing machine in the intensive care unit.  The doctors prepared us for all possible outcomes (death, paralysis, blindness, etc.)—yet, we found comfort in the fact that the doctors were able to take the entire tumor out (full resection).  He explained that the tumor was cancerous (Medulloblastoma) and that Teagan would likely have had a stroke and died, within the month, had she not gotten the proper treatment.

That night was long and tiresome as the we were not sure what condition Teagan would be in upon wakening—but we were extremely thankful she was still alive. Given the open space in her brain, they needed to watch her closely over the next few days to see how the brain settles and shifts.  Teagan woke the next morning, but she was not moving the right side of her body. An MRI taken that morning showed that she had ataxia (tremors) on her right side of her body, which may or might not improve with time. 

12/8/2016- A great day!  Thank God, two days later Teagan stretched out her little arms and said, “Momma!", and my heart felt like it was rescued.  And, when she sucked her thumb, I don’t think I’d ever been happier in my entire life!  Since Teagan was also breathing on her own, they removed the breathing machine from her room.

12/11/2016- Later that week, we met with the oncologist team to learn about what the future would entail.  They told us that Teagan would need 6 months of chemotherapy starting on December 26th, the day after Christmas, with an additional 6 weeks of radiation after chemo.  The next three weeks were spent overnight staying at Children’s, watching to see if the drain, once turned down, would allow her brain to reabsorb the cerebral spinal fluid.  We quickly learned that Teagan could no longer walk on her own after surgery—yet we were told to remain hopeful that her functioning would return over time.  Unfortunately, the trauma from the surgery, and the plethora of steroids she now needed developed into Posterior Fossa Syndrome (inconsolable fits). Teagan was taking 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.  Fortunately, turning down the drain appeared to be working so the doctors took out the stint and her brain began draining on its own.  Alas, we were finally allowed to go home!  

12/23/2016-Within two weeks Teagan began to show signs of discomfort where she was screaming, vomiting, and inconsolable.  By the time we got to see a doctor, Teagan was still breathing, but she was no longer moving her limbs or responding. They diagnosed Teagan with Hydrocephalus—a condition where there is an accumulation of cerebral spinal fluid in the brain. An emergency surgery was performed to place another drainage shunt and they also inserted her Hickman catheter during that same surgery in preparation for her Chemotherapy that would start in 3 days.  The double Hickman catheter line, which is a long thin tube inserted into her chest vein, allowed Teagan to receive her chemotherapy drugs as well as blood draws, so she did not have to be poked multiple times daily.

PRIOR TO DIAGNOSIS

On December 5, 2016, one day after my daughter’s, second birthday, she was diagnosed with (a malignant brain cancer) in the back of her head (in the cerebellum that controls balance, coordination, and other complex functions) which was touching her brain stem.

But, let me take you back four weeks, prior to that horrific day, and share with you what lead to this dreadful, life changing, diagnosis for our family.   Teagan (aka "Sweet Tea"), had been vomiting bile in her crib during the night for almost four weeks. At first, doctor’s thought she had nasal drip and then two weeks later they thought it might be acid reflux. As time progressed, exhaustion set in from showering Teagan two to three times a day, and doing laundry daily for her sheets.  As you can imagine, Sweet Tea was exhausted. And of course, we were too.  On the morning of her birthday party, I took her in again to a new Doctor, since it was a Sunday and her normal pediatrician wasn’t available.  As we were leaving, this new Doctor mentioned, “that sometimes when there is vomiting and loss of balance this can sometimes indicate a brain tumor”.  Every hair on my body stood on end while I was making a follow-up appointment and I left the office even more confused, and frustrated.

12/4/2016-  In the afternoon Teagan was the star of the show at her Elmo themed party that included mostly family.  She was a trooper at keeping up with her party, although she was noticeably clingier and had little energy.  She began throwing up again shortly after the party and once again at 2am.  After getting Teagan settled again that night, I found it impossible to sleep—I laid back in bed and could not get the “brain tumor” conversation out of my head.  I got up and emailed our Pediatrician in the middle of the night with my momentous concern.