Houston we have landed.....in Denver
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!