Happy (belated) Halloween, where I’ve been and answered prayers.
So much has been going on and I haven’t had a second to breath in the last few weeks. They are finishing up on the house, work has been insane… what USED to seem like my time of the year to start to slow down, now seems to be just as fast paced as being dead center of wedding season! I’m not complaining.. it’s just bittersweet. Then Bear gave us a little scare.
This is to explain why I’ve been a little MIA.. and pretty scatterbrained here lately.. (well, more so than usual.) Earlier this year Briley had some explained bruises that wouldn’t heal. They came up on the back of her right calf muscle and as soon as we realized they weren’t healing, we got worried. We talked to her pedi and we just kept an eye on it. Then in July she got a knot under her skin.. about the size of a dime, in the same area as the bruises, with MORE bruising. Then about 4 weeks ago we found 3 more.. all larger than the initial knot.. one of which was triple the size. The original knot had very slowly shrunken, but had never gone completely away. With these new knots came even more bruising- BIG bruises. We’ve been working with our Pedi since the first knot came up but ultrasounds were indecisive.
He referred us to an oncologist at Children’s last week. Sitting in that oncology waiting room was a really humbling experience. Babies, children… everywhere.. all smiling… almost all of which are going through chemo… but still look at you with these warm, sweet, innocent little smiles that make you immediately smile right back, twice as big, without even realizing it. We saw 3 doctor’s there.. who were also confused about the knots. Our main doctor ordered an MRI. She told me that although she didn’t feel like that is what it was, that we couldn’t rule out a very rare cancer of the muscle. My heart sank. That Saturday we left the house at 4:15 am, got to children’s about 6:45 am. They had an emergency so we didn’t actually get to go in for the MRI until 10:00. B, Briley and I watched Beauty and the beast and played while we waited. They only allowed 1 parent to go back so I took her back and they sedated her and we waited. We LEFT the hospital at 12:30. Longest day of my life. I was so worried about the sedation alone… much less the results. Briley went under sedation very well! The anesthesiologist and her nurses were amazing. They put the gas mask on her and she tried to turn her head.. so I started singing one of her favorite songs.. (Itsy Bitsy Spider.) The nurses AND the anesthesiologist chimed in and they started to rock her back and forth while we all sang. She grinned and then her head slumped over. I had to take her earrings out while they were trying to find a vein for the IV.. watching her look at me, paralyzed and only able to grunt at me was the hardest thing I’ve ever done. I felt helpless.
Waking up from the sedation did NOT go well. She didn’t react to the sedation well at all, she was terrified and acted like she didn’t know who we were. I carried her around the recovery room and walked up and down the halls, anytime the nurses would come near she would start all over again. She was screaming so hard she could not breath. Finally one of the nurses took all of the tape and wires off and I bundled her up in the hospital blankets and we took her out into the hall of the hospital and dressed her there. Once she saw the sun through the windows she slowly started to feel better. Mom and dad came with us and dad took her out into the little garden outside and walked her around.. she finally started to calm down. While he was doing that I paged our (AMAZING) doctor (who had given me the number and told me to page her if we needed anything.) I paged her as we were walking to the parking garage and she called me right back and told me that she had already called the department early that morning and told them she wanted my results immediately.
We stopped and had lunch and we had only been home about an hour when she called with the results. NO cancer. I’ve never felt time drag on like it had that entire week but when she said those words I felt like about 1,000 pounds had suddenly been lifted off of my shoulders. Briley was diagnosed with a disease called Venolympatic Malformation. She explained it as a disease she was born with that causes these “spider web” like veins in her leg to not properly form. Normally a clear fluid runs through the veins, but without them being fully formed the liquid then turns into a gel an causes these knots or “clusters.” She said this isn’t anything life threatening and she spoke with a specialist who said that at this time there really isn’t anything we can do. If later they start to cause her more pain or make it difficult for her to move around there is a treatment that will cause the knots to shrink. They will always come back, but that the important thing is that it’s not life threatening and it’s certainly not anything we need to be worried about right now. She’s happy and healthy and we are so blessed.
I’m working on getting caught back up… and will be trying to post blogs as often as I can. Hope everyone had a great Halloween. Bear’s first Halloween was definitely different than we expected, but then again it seems like we never do anything “normal” anymore. We’re looking forward to having a Christmas at home this year.. seeing as how we spent last Christmas Eve in the hospital, eating Popeye’s Chicken and watching “A Christmas Story” for 24 hours straight. (For the record we usually watch A Christmas Story for 24 hours straight every year.) ;) Then being released from the hospital on Christmas Day and having Christmas lunch at Furr’s before taking Bear home for the very first time. :)
We are SO thankful to finally have a name for it and have finally been able to rule out the thing that scared us most. We received an overwhelming amount of messages, emails, texts, calls, etc.. all from people letting us know they were praying for Briley and us. I can’t tell everyone enough just how grateful we are to have so many amazing people surrounding us and we truly felt all of your thoughts and prayers. I’m actually further behind than I ever have been before. It’s been a little overwhelming since spring and it’s just seemed to snowball, despite working 15+ hours each day. Sometimes I feel like the walls are closing in on me.. and then something like this happens and God brings what’s most important back into perspective.
“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?” Matthew 6:25-27
“Cast your cares on the LORD and he will sustain you; he will never let the righteous fall.” Psalm 55:22
Melanie - Tara, As a Mom, I couldn’t help but cry while reading your blog. I’m so thankful that Briley is cancer free, and that you can rest a little easier at night! May God continue to bless you and your family!
Marla Davis - Tara,
As tears ran down my face reading your post, I am just so thankful that all went well for you and your family. Although I don’t really know you, I am a mother, and I know the fears that we all hope and pray will never touch our children. I am just soooooo very happy for you! If for any reason, you need to postpone Kati’s sitting or even cancel it in order to get caught up, we will completely understand. I know Kati’s is not until April, but you can move us, cancel us, or just whatever you need to do to make your life easier! Again, I am very happy for you! Marla Davis
Kristen Fox - These are precious!!! :) your story just gave me some much needed inspiration!!! :)
amber holmes - Tara- I was very happy to read that its not cancer, I to have had to go through the sedation withdrawl when my daughter had tubes put in and yes its very scary and you feel very helpless. I’m so glad to hear that what Briley has isnt life threatening. God bless yall!!! :D
Ashley - Tara,
I’ve been silently following your blog for about a year. (I’m just a huge photog bluff)
I’m sorry about your scare and I will keep your family in my prayers. I’m glad things are good and I sincerely hope this is the only scare y’all receive in your little miracles life :)
God Bless,
Ashley
Autumn Henson - I’ve been antsy waiting to see what the Doc said..Necah updated me about the little spots went I went and saw her. I will continue to pray for Briley & U & B!!! She is absolutely precious!! The Lord will not give U guys anything He thinks you can’t handle! & I too was crying reading this! Children are a gift from God & It hurts my heart when they are in pain or have problems! You are a wonderful Mom & a very talented person and I am soooo relieved it was not cancer! As usual adorable pics of her!!
Donna - While you do not know me personally, I know you through the Snell family. I had tears reading of your scary journey with your precious baby. I’m thankful your story has a happy ending!
Ally - Such an inspiring post! I am so happy God showed his grace :) Thank you sharing and bringing light to my busy schedule. Glad you back.
Kristen - I first discovered you by a picture of you did of a little girl and her Beads of Courage. I spotted it right away as I saw it pop on my facebook wall (Colin Smith reposted) and my little girls connection. My Lucy has her own set of beads. Ever since then I have been following you and absolutely love what you do! I find you as an inspiration. Well I couldn’t help but cry my eyes out as I read your blog, I felt as though I was reliving my little girls first year of life. I think I cry more now than I did while we were battling Lucy’s cancer. So I totally understand the fears you must have had and was very relieved that it wasn’t cancer!!! And my Lucy has been cancer free for just over a year! Holidays and birthdays all have new meaning. All the other days I try to slow down and enjoy life. We will keep your family in our thoughts and prayers. No parent should ever have to be faced with the thought of their child having cancer!! Thank god it didn’t become a reality for you!
Rachel Stewart - I am crying tears of joy for you! Cancer is such a terrible disease. I couldn’t imagine a sweet little baby with it. Count your blessings. Hopefully this disease will not cause her pain in the future. Good luck getting settled into your new home. I can’t wait to see pictures of the finished product! We are about to start on that same journey. Have a wonderful weekend!
Kasie - I am just now getting around to looking at your blog for the week, but when I read this…it made me realize that everything I worry about on a daily basis is nothing compared to some things in the world. You are all so very blessed. It broke my heart just to read the beginning of the post…but when I read that Briley is ok, I immediately began to thank God for his wonderful hand being on you all during this time. I pray that God continues to bless you.
melissa Cornell - Praise the Lord Tara…Romans 12:12 Be joyful in hope, patient in affliction, faithful in prayer.
He knows us and hears our cries
meegan - So glad to read this post and your faith in Christ and answered prayers!I wish i would have known during and I would have prayed and prayed and prayed with you!!! praise Jesus!!!
Meg Darket - I have just found your blog and just started reading and enjoying everyone of your photos. I came across this post and sobbed the entire time. I have a daughter who is about to be 17m old… I can not imagine going through what y’all have been through. I will be saying a prayer for your family tonight! I’m so happy to hear your story ended so wonderfully!
Shirley Temple | Tara Swain Photography Shirley Temple | Creative, happy, whimsical, eclectic and fun. - […] makes me sad to see how much she’s changed from her 1st Halloween and her 2nd […]