I have been meaning to write this week to give an update. Teagan is currently in the chamber getting oxygen and once she gets out we are headed to the airport to come home for the weekend. She has her last treatment on Monday so we will fly back Sunday evening and then come back home for good on Monday after her last treatment. Had to get home this weekend for Judd's first tball game with Dad coaching as well as our first fundraiser for Sweet Tea Cancer Connections at the Fairwood Golf & Country Club. There is also a twilight this weekend so will get my first break in two months to golf and be with friends!
I have to start by telling you how well Teagan is doing! Her energy level continues to improve and and her language also is continuing to explode! Last night we were downstairs eating dinner with the friends we made here and she asked her friend Emma if she wants to play the piano with her. This seems pretty normal but it's a big deal for our little girl to initiate social interactions using full sentences. Don't get me wrong she would always get the message across previously given how social she is but using full sentences is a big deal. On Wednesday at arts and crafts, she went up to a boy and said, "My name is Teagan. What's your name?" Again, normal typical kid like interactions that continue to be a big deal for us!
In fact, we are hoping to have her begin preschool in the next couple weeks. She will likely only get in a few weeks before summer but the desire for her to socialize is so strong I figure why not start her. We had originally planned on her starting last fall before she got radiation necrosis so it's really exciting to still be able to have her start as we originally planned (even if for only a few weeks). She will get to go to a special needs preschool she qualified for which is located at the same school as Judd. We got her a new pink Paw Patrol backpack and lunch bag which she picked out and she is extremely excited!
Teagan does still struggle with balance and cannot walk independently still. This is something that ever since waking up from brain surgery she has struggled with as she previously used to be able to walk independently. No doctors will give us false promises which I respect. We will continue to work on this and are even more hopeful now that she has the energy and stamina to begin to build more muscle and make gains. We never ever will lose hope here!
In packing up our stuff and cleaning out our apartment for the next family to come in, it has invoked a lot of thought. Honestly, this whole experience invokes thought. How could it not? Previous to this I had never experienced being away from home while my daughter was receiving treatment. This experience has opened even further my empathy box for families impacted by cancer. Being at this house and making friends with new families who are currently in the midst of treatment and their fight brought up a lot of emotions. Having gone through treatment with Teagan and knowing the struggle and pain it involves and then seeing others in the thick of it was hard to sit with. The human desire to help other human beings with a story similar to yours and yearning for the right thing to say or do can be a struggle. Cleaning our apartment and wondering what family will be in here next, how old the child will be, and what type of cancer they might have. The mind goes wild with wonder rooted in a deep empathy for these people we don't even know but can literally feel their pain. The love this journey pulls out of me from places I didn't even know existed continues. Not a bad thing. Not a bad thing at all.
Teagan will be getting out of the chamber soon.....so what's next. We don't know what will come next. One never does with cancer. We just hope for the best. What we do know is that on the 21st of May Teagan has a full MRI to check for evidence of disease. Then on the 23rd with meet with her Radiation Oncologist as apparently these will be additional appointments we have now with her new diagnosis of radiation necrosis. We also will be checking her thyroid when we first get back as her levels have continued to be low so we will hopefully learn more about this.
What we do know is we will not take a second for granted at home as a family! I have always loved being home with our family but now so even more. What we do know is Teagan gets to be back home in her own bed and play with Judd in their playroom. What we do know is our family gets to enjoy the ordinary days together. What we do know is Teagan, thanks to this therapy, has received a ton of healing to her entire body which has left her with more energy than I have seen her have since before diagnosis. This I will take........all of it! Life is good!
*If you have not see the post on FB, Teagan was featured on CBS news here in Denver.
Here is the link if you would like to watch:
*If you are interested in learning more about the STCC fundraiser we are doing with glassybaby, here is the link:) People can make purchases online with our "sweettea" code if they are not able to show up in person. Perfect Mother's day gift that also goes to a great cause for STCC and glassbaby (founder of glassybaby is a 3 time cancer survivor herself).
We just got back from dropping Jeff and Judd off at the airport to return home and thankfully Teagan transfered from sleeping in the car back to her crib so I have some time to write. It's interesting how lonely coming back here to the apartment is without them is. We got to be together for four days straight and this was the longest time we got to be together in a month. Helps us truly appreciate all the time we have together as a family. The need to go "do stuff" is quite nonexistent I must say as we are happy to play in the play area here or go out to breakfast together as a family and that is plenty good enough. I think this may have to do with the fact that when you don't get to be together as a family what you do really doesn't seem to matter much anymore as long as you are together (at least for me).
I'm actually quite thankful for this as prior to Teagan's cancer diagnosis I often would go to great lenghts to think of what fun stuff we were going to do and sometimes would put unnecessary pressure upon myself to make sure we were coming up or keeping up with all the fun kids stuff to do. Having to relocate our family for Teagan's treatment, though don't get me wrong I would much rather choose something else, has helped create a clean and simple perspective on what really matters. I say clean and simple because it has helped me realize there are really very few things that truly matter for me and lots of litle stuff that doesn't matter much. Another thankful lesson that has reappeared yet again along this journey!
Last Tuesday, marked the 4 week point which is halfway through Teagan's hypberbaric oxygen therapy treatment (HBOT). Teagan continues to show improvements. Jeff and I were talking last night about all the improvements we are seeing which include increasingly less ataxia (shaking-especially less in her left hand), almost non existent staring off episodes, and a huge increase in energy which is likely one of the most obvious benefits as this allows her endurance to be such that she can now walk everywhere we go in her walker which was not possible prior to this. She also is able to wake up much quicker from her naps and her energy previously used to taper off around 2pm and this little thang lasts until you must put her down at night. Last night for example, her and her brother sharing a bedroom decided they were going to stay up and chat and play in her crib. Most often this would make me irritated but I must say I was beyond excited that a.) she could last this long into the night and b.)not only could she last this long but also had the energy to be trying to climb out of her crib and trying to wrestle with her brother.
Needless to say, we are very optimistic and thankful for the results we are seeing. Teagan also got to move into the large chamber last week with 4-6 other adults. Given how social she is she has adjusted well to this. Previously they had her in a smaller chamber by herself with a technician but since she was doing so well they moved her into the larger chamber now. Teresa, the Secretary, gives Teagan a new butterfly sticker everytime she comes out of the chamber and she now has her walker beautifully decorated with butterflies.
Along with her increase in energy she is now able to talk with others and her favorite sayings as we walk every morning to the chamber is asking other strangers, "What's your name?" and "What are you doing?". She literally loves to ask each and every person these questions. She also has a routine of stopping by the wound care and diabetes center front desk on our way and saying hi to her favorite person at the front desk, Ginger. Teagan in her true silly fashion calls her Gingerbread. Last week while walking out of the chamber, I put on some music as we walked out. Teagan loves to dance but music continues to calm me throughout this entire journey. We put on Can't Stop the Feeling by Justin Timberlake (Thanks Tenille for the song recommendation!) and Teagan proceeded to see one of the regular radiation nurses, Nicole, in the hallway and had a dance party with her. As you can see by her regular encounters of asking everyone their names and what they are doing she has made friends quite easily. I will have to get video of her moves as if you haven't seen them they are off the charts! They will make any stranger in the hallway smile! Her and Judd are quite the little dancers together!
Two weeks ago, they asked us if they can do a local news story on Teagan to help share the progress she is making. I have always been a little bit shy of the spotlight but I figure if we are able to help one parent to learn about this healing treatment and save them the months of research we had to do to find this, it will be well worth it. Sometime next week, they said they hope to bring the cameras in to do this story which should be fun. I'll make sure to share this when it happens.
Speaking of spotlight, Teagan made the spotlight last week on Children's Cancer Research Fund's (CCRF) Instagram Takeover. If you haven't seen these pics I would encourage you look up Children's Cancer Research Fund on Facebook as well as Instgram. CCRF not only helped share Teagan's story but also was so gracious to share with their followers about the app our nonprofit is creating. It was a little overwhelming in a good way to see 900 likes on their first post of Teagan. It always feel so good when other people making efforts to help the cancer community embrace us and are willing to help us out.
This among many other examples along this journey continue to affirm how generous and caring people are in this world. I continue to be humbled by the generosity and love which exists among our fellow human beings. When given messages of this not being so, I must say I don't listen and then consciously make efforts to be around others who share the same grateful energy. Life is much too short not to.
Lastly, thankfully Judd is now feeling better. On Tuesday night when Jeff got here, about 20 minutes after we got back to the apartment, Judd began puking up large amounts which lasted until 3am puking every hour. Thankfully Jeff was here and not me alone and by the next morning Judd was feeling better. Since this journey began with Teagan's sickness Judd's tummy has been pretty sensitive and/or often the way he holds his emotions. Cancer we have learned effects the whole family. We think it was connected with constipation and luckily there were no germs spread to Teagan as throwing up for her would be a trip to ER and likely concerns with her shunt, etc. She did show a decrease in energy following this but we are hopeful it is just the lack of sleep coupled with how easily her neurological symptoms are effected by lack of sleep. We are watching her closely now to make sure her energy returns once she is able to catch back up on her sleep. Thankfully, this turned out to be a huge break on our front with no puking from Teagan and thus no unnecessary ER trip.
Thank you everyone for your continued support. We appreciate your continued prayers and positive thoughts towards Teagan. Hope you had a great weekend and we look forward to updating you on Teagan's continued progress!
Dear Friends, Family, and kind Followers of Teagan's progress,
I wanted to write a little update on how things are going for Teagan as tomorrow will be her full 2nd week of hyperbaric oxygen therapy treatment here in Denver, Colorado. So far she has adjusted well. She no longer cries in the morning asking why we have to go which is a big Mom relief (phew!). She does cry every morning when I put her down in the chamber but thankfully quickly stops as I can hear her from outside as she begins playing with her animals and toys. Given I can't be with her in the chamber, I have selected a nice collection of toys and books to help pass the time as it is 2 hours from start to finish. The toys I can send in must be plastic and not have air inside them as with the pressurization this could cause toys with air in them to explode. In addition, only certain papers or coloring books can go in with her that are not a fire hazard. Luckily we got all the toys squared away and she has quite the set of legos, plastic toys, books, and snacks to help her through the daily treatments. I promise her a sucker everyday after she gets out and she never fails in reminding me. Gotta enjoy the little things in life and not worry about the small stuff (like too much sugar) she reminds me as she pops in her sucker and takes off down the hall to the car to leave!
Everyday Teagan walks into treatment on her own which is about 1/4mile walk each way. In addition she is walking to and from the car. This may not seem like a big deal but she has not had the endurance to do such for quite some time so this is very exciting for us. I bring the walker everywhere now and we use it like any other kid who walks unless it's something I need to get done in a timely manner. Teagan daily has taught me to slow down in life. This I am very thankful for and I must say this has not come easy for me as someone who loves checking things off a list. Don't get me wrong, I still love making a good list, but I have learned to ask myself, sometimes out loud, what's the rush? Where I am rushing to? What's the rush of living life when all we have is now or today. Through this journey I have realized I am often rushing to nowhere. So thankful for this lesson she teaches and reminds me everyday!
We have also noticed that her ataxia (shaking) is a little bit better (not a lot but a little). The doctor today said that they don't expect for us to see changes or differences from treatment possibly for another two weeks to a month. So we will continue taking her there daily and hoping and believing in positive results. Today for the first time yet, she did not cry when I left her as she told me she was going to show Judd how brave she was. I think we all get by now how brave she is:)
Judd and Jeff were able to fly in last Friday together and we got to spend the day together on Saturday as a family. Unfortunately a water pipe at home burst that brings water into the house so part of the day Saturday was spent figuring this out from afar. Jeff flew out Saturday night as he had to work Sunday morning but luckily Judd is staying with Teagan and I this week. It has been quite the adjustment for both kids who are so happy to see eachother but also having to learn to share again as they are not used to this. Had a few little disputes over toys but honestly everytime this happens I am so happy that a.) they are together b.) Teagan is healthy enough to fight back and c.)they are both portraying developmentally appropriate behavior-fighting with their sibling. Sunday we got to go to the aquarium and it was so refreshing to be able to do a fun outing!
Last Friday, unfortunately we learned that the one other boy we met Teagan's age that had the same type of cancer, Hunter, passed away. His Mom had reached out to me during chemo and is one of the most positive and hopeful cancer Moms around. I must say that this hit very close to home as this is the first child that our family actually knew the family of who died of cancer since Teagan was diagnosed. This is Jeff and our worst nightmare and with it being the same type of cancer it hits even closer to home. I cannot imagine the pain this family is experiencing. It has been amazing to see the community of Maple Valley rally around this family and to see all the love being offered up to them.
A few weeks ago as well, I learned that Sooze Johnson, who is the reason Sweet Tea Cancer Connections (STCC) is as far along as it is currently, was diagnosed with lung cancer. I met Sooze last Spring when she came to our house to do a spotlight article on Teagan for the Golf and Country Club we belong to. Teagan warmed right up to her and when I told Sooze about the app I was working on creating she asked how she could help. I wish I could explain all the ways she has helped and assisted STCC because it is beyond explainable. This woman is a powerhouse and comes from a professional background where this is in her wheelhouse. I am still in disbelief of this news but always, always have hope that the doctors will be able to treat and restore her health. We often send Sooze videos to try and thank her for all her help and recently I explained to Teagan about Auntie Sooze's cancer and then asked her with video playing what she thinks (we try to be completely honest and open with our kids about cancer). Teagan says to the camera, "You'll be ok Auntie Sooze. I'm ok. I've got a dolly." It warms my heart to see a three year old showing compassion and empathy while also spreading love at such a young age.
We are looking forward to this weekend being able to fly home and be together as a family with the four of us for Easter weekend. One thing being away from home does is truly help us appreciate our home, our family, our community, and all the little things that we associate with home. Thankful for this!
I must also say that we are so thankful for all the gifts and cards we have received while here! I can't thank you all individually in this post but please know how much we appreciate your kindness. I can't tell you how warm it makes us feel to see our mailbox full and Teagan gets beyond excited. Just today my cousin Linda from Michigan sent a care package with bunny handprint pictures from all the kids in her preschool class. To know that other little kids are thinking of Teagan and wishing her well makes me as a Mom, who sometimes worries about how much time she gets here on earth, so happy to know that she is helping others spread love! We are beyond thankful for all your positive thoughts, prayers, and well wishes for Teagan. I truly believe all this positive energy, prayers, and well wishes are working and please keep them a comin' Teagan's way!
Hope you are all doing well and having a great week!
Hope everyone is doing well! So much has happened recently I have a hard time remembering where I left off.
I think last time I wrote we were waiting to get final confirmation on the date for Teagan's hyperbaric oxygen therpy treatment to start. We had hoped it would start on the 12th and it did! She got her evaluation yesterday for the hyperbaric chamber and today received her first treatment. I wish this update was that simple but alot has happened between my last post on caringbridge and today. I will do bullet form to make it a quicker read:)
*March 2nd (Friday before last)-Teagan got her cortisol test where they artificially stimulated her cortisol and then took two separate blood draws every half hour following. Thankfully this test came back great and they were able to confirm her cortisol is being released as they would hope! Big win on this!
*March 6th (last Tuesday)-Teagan got tubes placed in her ears so we don't have any issues in the oxygen chamber with her ear drums rupturing due to the pressurized chamber she will be inside for 2 hours every day for 6-8 weeks. We have never had such a simple procedure yet. She only needed gas, no IV, to go under and she woke up alert and happy (not angry in her usual way after IV anesthia). We had a 6am check in and were home by 9:30am! I sat there daydreaming that this was my life at Seattle Childrens Hospital. I'm sure though that if we hadn't been through what we have this would be scary. All is relative and all is real for us humans:)
March 7th (Wednesday) -Teagan spiked a fever 100.7. She also had a rash extending down her chest and her VP shunt line which goes from her shunt (drain) in her head down into her belly. This is what drains her cerebral spinal fluid out of her head and into her belly. A fever on its own would not be so worrisome but this rash or irritation directly over her line in addition to the fever added a level of concern. We continued to watch it.
March 8th (Thursday)- Teagan had a full brain and spine MRI. This MRI involves her being put under anesthia for an hour. This was her two month post radiation necrosis scan following her Avastin immunotherapy treatment. This scan showed good results in terms of the necrosis healing. There were three spots in the radiation bed that previously showed up that were a lighter color around the spots. This is a little concerning but thankfully our Neuro Onc Nurse Pracitioner, Susan, helped us consult with Teagan's Radiologist who also felt that there was no need to be too concerned over this. Of course the radiology report, says it cannot rule out recurrence, but tomorrow the Brain Tumor Board will look over the scans together as a team and they will follow up with us if there are any concerns raised though we don't anticipate such.
While we were waiting in the room, we noticed that Susan was coming in the room late. This is never a good sign so I was a little nervous. She came in and began telling us the news with the concerns about the three spots. I, who was already emotional with the fact I was leaving the next day for Denver, began to cry. Teagan, for the first time, looks up at me and says, "no Momma cry" and then burried her head in my chest and began to cry. This led to a world record Mom stops her crying and comforts Teagan. I am always so proud how tuned in Teagan is to other kids at the hospital and how they are feeling but this one moved me to see how tender her heart is.
March 9th (Friday)-
Teagan still had fever and rash now was a little swollen over her line. We sat in the parking lot at Boeing Field calling our Neuro Onc Nurse Practioner (who is the most amazing person EVER). She asked if we can postpone our flight and come to Seattle Childrens to get a blood test. I decided to pull a "Ninja Cancer Mom" move (thanks for the term Audrey) and I called directly to Colorado Children's before we took off to see if we could go to their outpatient as soon as we got there. Given Seattle Children's is so amazing, by the time we got there the two hospitals had already consulted and they saw us before they closed with the idea we could avoid ER. They were great and we were able to see a Neuro Oncoloist and a Neuro Surgeon Nurse Practioner for the shunt. They all agreed it was her fighting something viral and the shunt line for whatever reason was reacting. They asked us to keep an eye on it and if something changed go to ER.
We were able to check into our place at Brent's place briefly before we headed to the hospital and learned that our room was not yet ready so we had a one bedroom hospitality suite. Jeff and I made a quick call to stay at a hotel for the weekend as the room was quite small for all four of us. I lay in bed that night laughing and half crying about this idea that I had it all planned out that Jeff would come and help us get situated with Judd and then fly out Sunday all set up. Plans are only plans:)
March 10th (Saturday)
We woke up and Teagan's chest was more swollen than the previous day. We called the on call Neuro Oncologist and headed into Colorado Children's ER. We were thankful for them to draw blood from Teagan and get a CBC and blood cultures completed to make sure there was not a bacterial infection in her shunt line which was our biggest concern. We got everyone all set up for a long ER wait which Judd loved as he got endless ipad time. After a few hours of waiting we were able to find out that her white blood cell count was normal which we were so grateful for indicating she was not fighting something more making it more than likely it was a viral infections. Blood cultures take 72 hours to bake so we would wait to hear back on this but no news is good news and we have not heard anything back on this thankfully.
March 11th (Sunday)-We had a big sigh of relief now that we felt confident Teagan did not have a bacterial infection in her shunt line. We were able to move my suitcases to our hospitality suite, do a Target trip, and drop off Judd and Jeff at the airport. I think I did enough crying prior to this goodbye that I was able to keep myself together for the most part. Judd was so excited to fly the plane home that he didn't seem bothered a bit. Teagan was upset as she wanted to go on the airplane too. It was a little bit surreal driving away from the airport saying to myself, here we go.
All that said, we are in Denver mostly situated now! Sheesh that was a lot to write and a serious rollercoaster of emotions and events. Teagan and I are in a one bedroom hospitality suite and will move into our two bedroom apartment after her treatment tomorrow. Teagan is continuing to ask me when we are going home and when Dadda and Judd are coming. Thankfully she quickly diverts her attention the next second to her doll or whatever toy is nearby. Kids are so incredibly present. If only I could do the same:)
Teagan had her first treatment today and she did amazing. She didn't even cry when I left her and for the first hour she played with her toys. The following hour she began crying Mommy but they let her bring snacks in there with her so every 30 minutes they took off her hood and she could snack for 5 minutes which helped calm her down. The first 30 minutes they pressurize the chamber and the last 30 minutes they depressurive the chamber. I of course was waiting for her with a promised sucker when she got out. We are so beyond proud of her!
I must say before wrapping up there were two big events prior to us leaving that made this transition so much easier for our family and we are beyond grateful for. Many of you may have seen my FB post that shows pics of the jet airplane ride we got to take here to Denver. Our good friend Kim, who is married to one of Jeff's best friends from college (Cam), offered to fly us to Denver in her Boss's jet airplane so we did not have to worry about germs for Teagan. This was the most convenient flight ever as we drove up to the plane loaded our bags and arrived to car ready for us in Denver. I mean, seriously, who does this? This also was a huge selling point we were able to use in telling Judd that Mom and Teagan are leaving for 8 weeks. Judd was beyond excited for this flight and even got to actually sit in the cockpit and fly the plane while we were flying! If you saw the pic of him flying, you can see the joy in his face which made my heart swell!
Another huge help we have received is that the company Jeff works for (which happens to be an airlines company) offered our family as many tickets to fly us all back and forth as needed during Teagan's treatment. Judd will be coming to stay a week with us every two weeks so I can be with my son and we do not have to worry about these flights. We also plan to come home for the Easter weekend and again don't have to worry about these flights. This is HUGE to us as this means Judd can see his Mom and sister every two weeks and Jeff can come when he is able to in between work even if just for a night.
There are many many times I don't have words to do justice to how grateful we are for our community of friends and family as well as strangers who have helped us along this journey. Every day is such a blessing. We don't know what tomorrow brings for any of us. Everyday I think about how grateful I am to be alive and healthy. I think about how we don't know our future but how grateful for every day I get with her and our family of four. I think about what a great life Teagan has and how everyone's support to our family makes her life that much better. This support you see helps us as parents which then effects her directly. Everything counts and everything matters. This is exactly why life is so precious.
Thank you everyone for all your support, love, and prayers sent our way!
Hi All! I wanted to send a quick update as I have had so many people graciously offer to assist us with our housing search in Denver, Colorado. I figure this will be the easiest way through one update to update you all. I must say my sister, Meg, did such an amazing job of writing these while we were in treatment that writing these updates now still feels new to me. I am forever grateful for Meg's updates to you all!
I must say I am constantly in awe of what nice human beings this world if filled with! Thank you everyone who has reached out to read my last update and also to those who have been in contact with me with ideas and connections for housing in Denver. Yesterday we got confirmation that we have been accepted to stay at a place called Brent's House in Aurora, Colorado. Brent's place is a community house that allows children with cancer to stay there. It is similar to Ronald MacDonald but it has two bedroom furnished apartments with your own kitchen. I originally did not think we would qualify as it typically fills with cancer kids who are going through bone marrow transplant procedures and need a super clean place. I honestly called hoping they might be able to tell me about other resources but to my surprise they said that she would not normally be accepted given she has compelted treatment but currently they have open rooms so we could come!
I cannot tell you what a huge relief this is! We had quite some trouble finding a place without knowing a for sure end date of treatment given we have to wait to see how Teagan responds to her treatment. In other words, if the treatment does not work they will terminate treatment early. Furthermore, I feel so much better knowing I will be in a place where they have other children that Teagan can interact with, they have a play toy she can play on and lots of toys, and that I will be surrounded by other families who have a common understanding of this world of cancer. Anyone who knows me well, knows I typically am a big fan of my independence. I can simply say life has changed quite a bit now. When going through treatment, being away from home, not having our family together, and dealing with all the fears that I still have on board from the last treatment we went through I am comforted knowing we will be in a little community and not alone in an apartment by ourselves going to and from treatment.
So what is next....
Tomorrow we go in to Seattle Children's Hospital to do a third cortisol test for Teagan. Unfortunately after getting two blood draws, Teagan's cortisol and thyroid levels are low. They also are watching her growth hormone levels as well. Unfortunately, another side effect of radiatioin is potential damage to the pituitary gland in her brain. We have learned from meeting Teagan's Endocrinologist that the pituitary gland controls cortisol levels, thyroid function, and human growth hormones. Tomorrow, Teagan will get an IV at Seattle Children's Hospital's Infusion clinic while they give her a medication to artificially stimulate her cortisol and then will draw blood from her every half hour for a total of three times. From here we will learn more about her cortisol and next steps we may have to take to help this piece. Following this, we will need to then learn more about her thyroid as well as her growth hormones.
Next Tuesday, the 6th, Teagan will have tubes placed in her ears at Seattle Children's so that the pressure in the hyperbaric oxygen therapy multiplace chamber does not cause her ear pain or potentially damage her ears.
Next Thursday, the 8th, Teagan has her full 2 month post radiation necrosis MRI. This is a big scan as the doctors already told us there is always a 5% chance what they are calling radiation necrosis could be recurrence of tumor. 5% chance doesn't seem like much but she had a 3% chance of getting radiation necrosis so quite frankly I live in a world of 5%=50%. Thankfully I am well aware my calibration is completely off and gets further off the closer I get to scans:) We always hold hope close around these times:)
We are currently waiting to hear back from the doctors for the last confirmation on treatment start date but we are hoping the week of the 12th we wil be able to move down to Denver and get Teagan's treatment started. We are planning on telling Judd this weekend and thankfully we have two sets of Grandparents and my sister in law who live in town to help us cover the care of Judd while Jeff is working and out of town.
Long story short, we could not do this without family and friends. We are beyond thankful for everyone's support from near and far. I thought I was going to hop on and give a quick housing update and here I am carrying on. I suppose this is because this is not easy. When there is the potential to try a treatment that could help heal our daughter's brain, I can handle "not easy" and am happy to "bring it" on my daughter's behalf. I no longer fight tears like I used to before as it is just now part of what happens when you are reminded of life and death on a daily basis. It puts you so close to the meaning of life that it carries such beautiful highs and joys like I have never experienced before but also such hard and difficult times and emotions. This brings you full circle as a good reminder to truly be grateful for every day we are here and healthy!
Thank you again and I will do my best to keep you updated as we go along!
I sit here in Palm Springs on vacation while Teagan is napping, Judd watching a show on the ipad, and Jeff out golfing. The sun is shining, and we have an amazing view of the mountains. We are sitting here enjoying as normal a life as we could ask for. Actually, it's better than normal as we are on vacation in a sunny place in February!
I realize I have not posted for almost two months as Teagan has been improving each week it seems. She unfortunately is not back to where she was prior to radiation necrosis but is still getting stronger and stronger. As a recap she finished her Avastin (Immunotherapy) treatment at Seattle Children's Hospital on December 22nd, 2017. The scans following this treatment showed improvements in the areas of her brain affected by necrosis which we are most grateful of. There is still so much to be learned about how this will affect her brain, but we remain hopeful. Teagan is now able to sit up again, can talk again, and can walk with the help of her walker again. Necrosis had previously taken these away and we were told she may not gain these back.
Following Teagan's last Avastin treatment, Jeff and I wondered even more than ever how this necrosis could further effect Teagan's ability to learn to walk. She has much more ataxia (shaking), her left hand is now much more difficult for her to use, she has foot drop, she had decreased muscle mass from the high dose of steroids, and her previously dominant eye has changed to the other eye. In the back of my mind, I remembered a parent I met through the app we are creating whose child died of medulloblastoma at St. Jude's hospital. This parent had told me if I ever need a second opinion to contact Dr. Gajjar.
With even more uncertainty now with the addition of radiation necrosis, I decided to email Dr. Gajjar and find out if there is anything more we can do to assist Teagan with walking assuming they might have something different there we could add in addition to what we are already doing to help Teagan learn to walk again. In my email, I mentioned the radiation necrosis Teagan was recently diagnosed with. Dr. Gajjar emailed back immediately and told us what everyone else has told us is that it's going to take lots of time and work to get Teagan back to walking. Again, no false promises were made telling us if she will ever be able to walk again. He also asked us if we were doing Hyperbaric Oxygen Therapy (HBOT) as well. I had never heard of this so I immediately emailed back to inquire more.
We learned that Hyperbaric Oxygen Therapy at St. Jude's is something that they treat all their radiation necrosis kids with as their first line of defense and then follow often with Avastin (the immunotherapy chemo drug Teagan got in Nov/Dec 2017). I passed this along to Jeff and he immediately began searching the internet to learn more via research studies on hyperbaric oxygen therapy for radiation necrosis. We talked with Dr. Geyer, our Oncologist, who spoke with Dr. Gajjar at St. Jude's. Dr. Geyer basically told us there are not any clinical studies on HBOT given the small number of kids who suffer from this. He let us know it would be up to us if we decided we wanted to have Teagan do this treatment.
In case you are not familiar with hyperbaric oxygen therapy, a simple google search in layman terms helps explain.
Hyperbaric oxygen therapy (HBOT) is a medical treatment which enhances the body's natural healing process by inhalation of 100% oxygen in a monoplace or multiplace chamber, where atmospheric pressure is increased and controlled. It is used for a wide variety of treatments.
Under normal circumstances, oxygen is transported throughout the body only by red blood cells. With HBOT, oxygen is dissolved into all of the body's fluids, the plasma, the central nervous system fluids, the lymph, and the bone and can be carried to areas where circulation is diminished or blocked. In this way, extra oxygen can reach all of the damaged tissues and the body can support its own healing process. The increased oxygen greatly enhances the ability of white blood cells to kill bacteria, reduces swelling and allows new blood vessels to grow more rapidly into the affected areas.
Jeff and I soon realized we now knew of a treatment, HBOT, that has the potential to further heal Teagan's radiation necrosis. We have no guarantees it will work and if it doesn't they will stop treatments right away. How though as a parent with this knowledge can you not pursue everything you know that could potentially heal your child's brain? Especially when the side effects are minimal as compared to the side effects she is currently experiencing from chemo and radiation.
Last Wednesday, we learned that Teagan has been approved by insurance to receive Hyperbaric Oxygen Therapy for her radiation necrosis. HBOT will require Teagan to be treated for two hours a day in the pressurized hyperbaric oxygen chamber five days a week for 6-8 weeks. I will not be able to go in with her for her treatment unfortunately. We have begun to explain this to the kids as Teagan is going to go visit a little rocket ship which will be helping to repair the damage the big rocket ship has caused Teagan's brain.
This last month, I have spent searching for hyperbaric oxygen multiplace chambers in the United states that treat children. Virginia Mason has a chamber here in Seattle but unfortunately, they don't treat children. Portland had one that was willing to try and treat Teagan but they were out of network. Finally, we were able to narrow it down to Long Beach, Denver, and Houston. Thankfully we stumbled upon a doctor, Dr. Thombs, in Denver who was overgenerous and willing to put through the approval to insurance while working with our case manager at Premera. With his help, he saved our family a trip to Denver just for the approval process.
We are now searching for a place for Teagan and I to stay in Denver for 6-8 weeks while she is in treatment. Thankfully we have the option of finding a place given all the generous donations our community has offered us when Teagan was first diagnosed. I hope to try and make the best of our time there. Honestly the hardest part is going to be leaving our son Judd. Judd is just now getting to the point where he is no longer afraid of going to the bathroom at school in fear of his class leaving him and now I am going to leave him. We have not told him the details of leaving just yet as we want to wait until we have an actual date. Before we leave we need to get tubes put in Teagan's ear to deal with the pressure in the chamber and are hoping we can find out next week when we can get this done and then find a place following in Denver.
I hate that I have to leave Judd but we are hopeful we can find a way for him to come visit and we will do our best to try and make it as least painful as possible. If there is one thing, cancer has done is it has made me much more mentally tough. If I can do 8 months of chemo and radiation, I can do 8 weeks of HBOT. This doesn't mean I am not ridden with fear at times and brought to tears on a very consistent basis. I believe though that we can do this and we will make the best of it because we actually have an opportunity to provide our daughter with a healing treatment! Not every parent with a child who has had cancer gets this opportunity for a healing treatment and for this I am grateful!
One day at a time and one moment at a time. This is what I used to tell myself in treatment and often find myself telling myself post treatment. We have yet to have a time longer than three months which we have not been challenged by some unknown side effect with Teagan. This amount of stress over this long of a period of time is not easy on the body or the mind. It takes a toll but I will always have hope. In fact, I am most hopeful that I can use this experience to lead me closer to post traumatic growth or benefit finding. Wikipedia describes it as, " positive psychological change experienced as a result of adversity and other challenges in order to rise to a higher level of functioning. These circumstances represent significant challenges to the adaptive resources of the individual, and pose significant challenges to their way of understanding the world and their place in it. Posttraumatic growth is not about returning to the same life as it was previously experienced before a period of traumatic suffering, but rather it is about undergoing significant 'life-changing' psychological shifts in thinking and relating to the world, that contribute to a personal process of change, that is deeply meaningful”.
I continue to strive towards post traumatic growth. It is not clean, in fact it is very messy and looks and feels at times like anything but pleasant. I still believe, hope, and am determined to do my best to make this journey with a child who has had cancer one that helps our family love more deeply, enjoy life more, appreciate each other more, be more empathetic to others, and be more present in this short time together we have here on earth.
P.S. If anyone knows anyone in Denver that knows of a place to rent in a safe neighborhood, feel free to let me know. We are searching VRBO and AirB&B currently. We are hoping we will be able to go in mid March after Teagan's next big scan March 8th at Seattle Children's Hospital. Thank you in advance!
Yesterday we delivered gift baskets to two families at Seattle Childrens hospital, two families at the Ronald MacDonald house, and one family at the Seattle Cancer Care Alliance apartments. All families are being treated at Seattle Childrens hospital currently. These baskets included gift cards to Starbucks (the only food vendor at SCH), visa gift cards to help with food, gas money, presents for their own kids, a self care treat for Mom or Dad, a plush towel, a mug with soothing teas from Starbucks, Beautycounter lotion and body wash, and some chocolates.
While coordinating deliveries, one mom commented that she had never experienced such kindness from a stranger. Her remarks helped me realize that those of us who have experienced a child with cancer are not actually strangers. We are all too familiar with each other's deepest fears - that our most precious babies could die - and we have no control over how it plays out.
These families are new members of our cancer family. Yesterday we were able to let them know that they are not alone and that there is always hope.
Please see the links below to learn more about the families you helped support. These families are early in their journeys and will continue to need support. All prayers, positive thoughts, kind gestures and love that you can send their way will be deeply felt and appreciated.
Jade and Chy Williams (daughter is Chaelyn-Wilms' tumor)
Chelsie Gonia (daughter is Alyssa-Neuroblastoma)
Kara & Jay Jones (daughter is Hunter Rose-Neuroblastoma)
Audrey & Matt Taylor (daughter is Danica-ATRT brain tumor)
Kathy Clark (son is Jace- posterior fossa embryonal tumor-brain tumor)
Many of you have likely seen my FB post announcing Friday night that Teagan's scan yesterday showed no evidence of disease and the scan also showed that the Avastin (immunotherapy drug) has been helping her radiation necrosis! This was the best news and Christmas gift we could have received Friday night. As I said on the post, I kept taking breaths of fresh air Friday night as I think I hadn't done so in the last two months living on the edge of such uncertainty of Teagan's life. We still will always live with uncertainty every three months while checking for evidence of disease and for the next two years watching for the potential spread of necrosis to return. The uncertainty these last two months before finding out the positive effects of Avastin though felt like uncertainty on top of uncertainty.
I realized this morning I have not posted since we first got the diagnosis of radiation necrosis. It has been a rough two months which might help explain why. The first line of defense against the radiation necrosis was a large amount of steroids. This helped reduce the swelling in her brain around the necrosis sites. Teagan gained almost 20 pounds in two weeks on her little body from steroids. This made it difficult for her to breathe, difficult for her to move, and pretty much hard all the way around for her poor little body. Another additional side effect of the steroids was that it did not allow her brain to sleep. For the first two weeks, I was sleeping on the floor with her in her bedroom as she was waking every other hour. When she would wake up her brain was wide awake so getting her to go back down was not an easy feat. We had also been working very hard to potty train her and this of course went by the wayside as the steroids made her extremely constipated. Finally after three weeks of no sleep, Jeff and I got smart enough (or we realized we were quite the opposite for taking so long) to realize we needed to change her bed back into a crib. Thankfully by this time, they had started to wean Teagan off the steroids so together the crib and the lessening of the steroids allowed us to slowly began to get some sleep with only a 11pm and 2am wake up. Slowly we moved to a 2am wakeup and then the Saturday after Thanksgiving she came off her steroids completely and within days she was sleeping through the night and also could take more than a 1 hour naps (like she used to).
During this time, Teagan was also receiving Avastin treatments every 2 weeks. Avastin is a chemotherapy drug with delivers immunotherapy. Our SCH team had said they recommended we put in a PICC line in her arm which would have been a temporary line (similar to the double hickman in her chest she had for chemo and radiation) for Avastin. Jeff and I were hoping to avoid this as it demands becoming a nurse again and flushing it twice a day as well as dressing changes and ER visits for any temperatures. Thankfully they were willing to allow us to try doing the regular IV. Teagan did amazing the first two times. She didn't cry and watched the nurse put in her IV both times. The third time they had to poke her six times before calling in anesthesia with an ultrasound to get the IV into her vein. The nurse told me she is a little more "fluffy" since the steroids stepped on board. Luckily the IV went in right away and as usual Teagan barely cried. Her pain threshold has become quite high through all this.
Friday afternoon, Teagan was put under for her full MRI which we do routinely to check for evidence of disease. They were able to place her IV at the same time while she was under so we didn't need to worry about her IV not going in. This MRI showed no evidence of disease (no cancer) and it also showed that the Avastin had improved the three areas of radiation necrosis! This was a huge relief as they had told us there is a 5% chance the necrosis could be evidence of disease but they did not think so based upon the location of necrosis. 5% though doesn't give me any piece of mind anymore as radiation necrosis is very rare and only happens to 3% of kids. I find that these small odds sometimes make me more nervous given all the rarities Teagan has managed to undergo. Thankfully the odds worked out in Teagan's favor from what they can see now and for this we are so thankful!
These last two months have been a hard time as Teagan turned into a completely different kid with no sleep, roid rages, and without much energy to move around given she was so exhausted and had little energy for anything other than eating. It was hard to see her have to go through this when I had hoped for so long she would be done with treatment. At the same time, we were so thankful we had a medical option to treat her with. In addition to this, we are always on alert watching her breathing to see if she skipped breaths or for any sputtering when swallowing. Both of these symptoms would show up if necrosis was to spread into her brain stem. Thankfully she has not experienced any of these thus far.
Teagan's words on a daily and weekly basis continue to take off. Her fine motor skills are slowly coming back as well though her fingers on her left hand tend to curl under more than before. Teagan had previously lost her ability to stand and sit from the necrosis and now can sit up right and can also walk in her walker. She is not nearly as stable as she was prior to the necrosis but we will get there. She is making so many improvements and we learned that the steroids they gave her actually ate up muscle mass so we are hopeful the longer she is off of them the more muscle she can regain which hopefully will only help her moving forward (literally).
Amidst all of the above, we have had so many positive and hopeful things help nourish our hope.
*The same week we got the diagnosis of necrosis, I learned that my colleagues from Issaquah School District donated enough leave to get me through the majority of the school year paid and with medical benefits so I can continue to be with Teagan to help her re-recover. I am still in awe of this and could not be more thankful for all the caring hearts in the Issaquah School District. It was so hopeful to receive this gift the same week as we learned of the necrosis and now were given an entirely new road map ahead of us with even more unknown turns and bumps than we had imagined. Thank you everyone for this more than generous gift to myself and my family. Words can't do justice for how thankful I am for this. Brings me to tears routinely....good tears!
* We also have had the best therapists from Children's Therapy Center (CTC) for Teagan (physical therapy, occupational therapy, and speech therapy). In January, Teagan will get new therapists at CTC as she has aged out of their birth to three program. I never knew how connected I would become to these therapists as I was a tearful hot mess as we had to say goodbye to them. They have provided so much support and are some of the most caring and helpful human beings.
*I was able to help other cancer parents over the holiday season through the non profit we created in Teagan's name. Visiting these parents going through this cancer journey helped me realize I am part of a new cancer family. This family is filled with amazing human beings who will do anything to help save their most precious babies. The hope, love, and connection I have seen through this and along this journey is something I will never forget. The human created barriers that often effect human connections such as socioeconomic status, race, religion, education, etc. are broken down through these cancer journeys. This experience has helped me to see and find what matters most in life and it has turned me into a more loving person. This is one of the things I am most thankful for through this journey.
I want to thank everyone again for all their support. I am always wishing that I could find a way to thank everyone for all their support but am overwhelmed by this thought given we have received so much love and support. My hope through Sweet Tea Cancer Connections is that I can give back to this world in a way that can spread my thankfulness and support by paying it forward through helping others.
Our family hopes you all have a happy and healthy holiday season! Thank you again for all your prayers, love, support, and caring hearts!
I want to update you that we are continuing to give "purpose to the pain" through working on creating a mobile app to help connect pediatric cancer families. I am amazed by all the people who are assisting me with this and I can't tell you how therapeutic this process continues to be. We currently have two UX designers working on the design and flow. Our prototype is expected to be completed in January 2018. We are currently seeking out app back-end developers to help it come to fruition as well as funding sources. If you want to keep up with our progress feel free to stop back by this website periodically and also follow us at our Sweet Tea Facebook Page.
Teagan had been making great gains since finishing radiation at the end of July and we were very happy and pleased with her progress. The last two weeks, however, we had mounting concerns as her balance was progressively getting worse. She had been able to sit upright and was learning to walk again on her special walker. But, now was falling over sitting and could not walk in her walker by herself anymore. I had been emailing our Neuro Oncology Nurse Practitioner who is amazing with my concerns. So, today we went into Seattle Children’s Hospital with concerns we had with Teagan’s balance and her eyes turning in. We saw Neurosurgery in outpatient that morning to check her shunt to make sure it was working and not causing the balance issues. They took a CT scan and it showed her ventricles in her head were the same size, which did not indicate a shunt problem. The Neuro Nurse Practitioner confirmed her ventricles didn’t show any change, but given that Teagan has a recalled shunt, she still urged us to replace the shunt. We asked to do a shunt o’ gram this week to try and gather more info on whether the shunt was or was not working and then left the hospital around 12pm to take Teagan home.
While driving home we got a call from oncology. They asked us to come back through ER as they saw some concerning new spots on the CT scan. They wanted us to go into ER where we would need to wait 6 hours with Teagan without eating to do a full MRI scan at 6pm. Full MRI scans require Teagan go under anesthesia, which is why she could not eat. At around 10pm we got results of MRI back which showed some new spots of “enhancement” which they thought were radiation necrosis, but could not rule out it being evidence of disease. We were told we need to wait until Wednesday for the Brain Tumor Team to review her scan as they would make this decision and tell us next steps. We arrived home Friday night from the ER at 11pm with a large amount of steroids to give Teagan until Wednesday when we would see the doctors again.
11/4/2017-The next morning, Saturday, we had made plans with the Roc Solid Foundation for Teagan, Judd, and their friends to take a limo ride to breakfast and visit the Kids Museum. During the time we were away from home Roc Solid, Weinersnitzel, and No Name Bikers’ volunteers, built Teagan and Judd a new play set in our yard! It was a prefect distraction from reality for the day and we were so grateful for this generous gift from the foundation. It was a perfect day; however the steroids were taking their toll on Teagan at times and leaving her in fits of “roid rage”.
11/8/2017-Today we learned the bad news from the Brain Tumor Team that they believe Teagan is suffering from radiation necrosis. This is all relative good news, in a sense, since they are 95% sure it is not new evidence of disease. This was our biggest concern. Unfortunately, radiation necrosis is not exactly good news either. So, what is radiation necrosis? I remember this was something they told us was very rare in the radiation intake. I honestly hate hearing something is "very rare" anymore, as this doesn't hold much meaning to us anymore. A Google search can help one better understand. Cancer Compass tell us the following......
“When brain tumors are treated with radiation therapy, there is always a risk of radiation-induced necrosis of healthy brain tissue. Insidious and potentially fatal, radiation necrosis of the brain may develop months or even years after irradiation. This poorly understood side effect can occur even when the most stringent measures are taken to avoid exposing healthy tissue to harmful levels of radiation. In most cases, radiation necrosis of the brain occurs at random, without known genetic or other predisposing risk factors. The only treatment options typically available for radiation necrosis of the brain are surgery to remove dead tissue and use of the steroid dexamethasone to provide limited symptom control. But clinicians have not found a way to stop the progression of necrosis, despite having tested a range of therapies including anticoagulants, hyperbaric oxygen, and high-dose anti-inflammatory regimens.
However, recent studies at M. D. Anderson have shown that the monoclonal antibody bevacizumab (Avastin) may be able to stop radiation necrosis of the brain and allow some of the damage to be reversed. Victor A. Levin, M.D., a professor in the Department of Neuro-Oncology and the senior researcher on the studies, said the findings suggest that radiation necrosis of the brain can be successfully managed—and perhaps even prevented—with bevacizumab or similar drugs.”
Our Team told us that radiation necrosis could get worse, but hopefully it will not for Teagan. We, and they, don’t know how this will play out so we will just have to wait and see. The most dangerous thing about her radiation necrosis is that is located immediately next to her brain stem. They have asked us to watch her very closely for her skipping breaths and /or trying to catch her breath or difficulty swallowing. These are symptoms related to the brain stem and if she was experiencing these, we would need to bring her to ER immediately as they could be life threating.
Tomorrow afternoon we will start bevacizumab (also known as Avastin) which is the immunotherapy drug mentioned above. She will receive this drug every two weeks for a total of 4 times through an outpatient iv procedure at Seattle Children's. The first time it will be 90 minutes, the second session 60 minutes, and the last two sessions 30 minutes long. She could get better or worse as we go, given no one knows what or how her necrosis will play out. We are hoping this immunotherapy will stop the necrosis and allow the damage to be reversed. Our Radiologist said we can hope that over the next 9 months to a year, we see her regain her progress back to where she was prior to this.
How do we process more bad news?
This will take some time to digest, the same way it took time for us to accept the reality of hearing our daughter had brain cancer. Before, our biggest concern was her cancer coming back, knowing that cancer is a disease that can be fatal. Now we have a side effect of her proton radiation that could be life threatening. It is late and the last 5 days of waiting have been mentally and physically exhausting. It is easy thus to begin down the “why us”, “why Teagan”, train of thought again. This thought of why honestly is not worth entertaining. It doesn't change anything, and it doesn't add to the quality of our life right now. I was once told at the beginning of this journey that the only way through this is going through it. There are no short cuts, no tricks, you just have to face reality and be gentle with yourself along the way. So simple and true, yet the biggest challenge in my life I have ever faced.
I keep coming back at the end of the day to hope. I always would search out quotes during treatment, during the endless hours in a hospital room looking for inspiration. One quote that comes to mind is, "If you keep hope alive, it will keep you alive". We plan to be hopeful and surround Teagan with our hopeful energy while continuing down the path to recovery, right by her side the entire way. We have no control over what the future brings for her, but we will never give up hope and we will be by her side, always. Another one of my favorite hope quotes is by Liz Chase— “Hope is not pretending that troubles don’t exist. It is the trust that they will not last forever, that hurts will be healed, and difficulties overcome. It is faith that a source of strength and renewal lies within to lead us through the dark into the sunshine.” ☀️❤️
The Run for Hope took place today at Seward Park. This was an organized 5k run or 3k walk in Seattle to raise money for Seattle Children's Hospital brain tumor research. We created our team name, Teagan Tough, from our friend Troy Nehring who coined the term with her birthday picture which was taken one day before her diagnosis of brain cancer. We can’t thank you all enough for coming out and donating to the Run of Hope! Over $500,000 was raised to fund research for cures for childhood brain tumors at Seattle Children’s.
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.
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.
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!
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.
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.
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.
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.
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…
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!