Brook's Journey 2013

For those that normally follow my blog... you know I usually have more pictures than words. However, sharing Brook's journey requires more words than pictures. Thanks to all for your prayers, positive thoughts, visits, meals, and more. I am and will be forever grateful.

At the risk of sharing too much, here are my journal entries and pictures...

May 30, 2013

So strange for me to experience the feelings I had today. I decided it was too difficult to deal with humans. I was done thinking about and talking with people... even for the day. So I took my frustration outside to mow, bag and edge the lawn... and weed the entire yard. After hours of hard work, I looked over the beauty of my efforts and felt satisfied. A small nap was in order before running two miles... more physical activity.

Then God taught me another lesson...

Brooklyn began losing feeling in her right hand and up her arm. I tried having her write, but she could hardly hold the pen. Her right foot and up her leg began to go numb and I tried having her walk, but her leg kept buckling. She then began slurring her words and was having a hard time putting a sentence together. I called Brett and he immediately came over and gave her a blessing. We then took her to the emergency room at Riverton hospital. After an evaluation, the doctor diagnosed it as a complex migraine with neurological complications. We'll be taking her to Primary Children's tomorrow for an MRI.

As I sat on Brook's hospital bed and held her hand, she asked me to sing to her. Tears ran down her cheeks as I sang all the songs I sang to her as a little girl. She squeezed my hand, smiled, told me she loved me, and then tears began running down my cheeks. I looked over at Brett and memories of sticking together through tough times flooded my mind. So many broken bones (16), surgeries (12), sicknesses (so many)... so scary... but together we made it through it all. My heart was filled to the brim with gratitude. Dealing with people and all our frailties, misunderstandings, hurt, worries, fears, etc... is so hard, but worth it.

May 31, 2013

Right now I'm waiting at Primary Children's hospital while Brook is getting a brain MRI. I'm grateful the episode occurred yesterday and the tests are today as today is the last day of our good insurance. Once again, we have been watched over. Our new insurance kicks in tomorrow, but it's not as good and doesn't cover all of our current doctors. Our prayer is that her MRI comes back clear, that the episode really was a migraine... or that if something is wrong, that it can be fixed. It's all in God hands and I must remember that.

June 1, 2013

To express how I feel right now is nearly impossible. So many emotions, so many questions, so much gratitude. About 15 minutes after writing yesterday's entry, our world completely changed. I'll record as much as I can.

Brook's MRI was only supposed to take 30 minutes. After we waited for about an hour and 15 minutes, we knew something was wrong. Our hearts were beating fast and I felt I could hear every second of a ticking clock. At the same time, I felt peace come over me. I was confused... I knew something was wrong, but I felt peace. How could that be?

I looked up and saw Brook walking toward us guided by a radiologist. I took Brook into my arms and the radiologist informed us that a doctor would be out to talk with us soon. Fear flooded my body. I looked into Brett's eyes and without saying anything, we communicated our fear. As we waited, numerous possibilities came to mind. I began to panic... then the white-coated doctor entered the room. He informed us that Brooklyn had a mass on her brain and there was blood between her brain and skull. He couldn't give us any more information until the neurosurgeons read the MRI, but told us that we were at the right place, doing the right thing and that they were going to do all they could to take care of her. I looked up and immediately said, "God, no! Please no! Give it to me instead!" I pressed her head to my chest and tears streamed down our faces. She said, "I'm scared, mommy... what's going to happen? Can I die from this?" Brett tried to hold her and I begged him not to take her... I couldn't let her go. Every ounce of me was clinging to her. I took some deep breaths and knew I needed to be strong for her. I couldn't let her see my fear. I just kept telling her that I loved her, that she was in the right place, that she was being watched over and everyone was going to do all they could to make her better.

We began making calls to family and friends... informing them, asking for their prayers, extending our insurance... anything we could think of. I finally let Brett hold her... I needed to escape. As I walked down the hall, the emotion was building and tears were streaming down my face... I couldn't get out of the building fast enough. I made it outside and gulped for air. I felt like I was going to burst. WHY? I kept asking that question and wanted so much to take it from her. I just kept begging God. I didn't even have much information, but I kept begging for him to spare her life, to heal her and to help me know how and what to do to help her. What do I say? How do I make her feel better? Seeing the fear in her eyes was killing me. When I returned, I held her in my arms and told her how sorry I was... and do you know what she said? "It's okay, mommy... everything happens for a reason. Heavenly Father made me strong... He made me this way." My heart melted and my head fell to her chest as I sobbed out of gratitude to God for giving me such a precious daughter. She told me it was going to be okay and then she began begging for her sister. The ache in her voice for her sister was so needy and genuine... all she wanted was her sis... and she wanted her now. The best I could do was connect them on the phone and the love and tears they shared nearly brought me to my knees. Bre's heart was breaking... and Brook continued to comfort her. That's how Brook's always been! She's the one with the cyst and brain bleed and she's comforting her older sister! Brook was reminding Bre that everything would be ok and that everything happens for a reason. She also said that other people had it much worse and that she had no reason to complain. Amazing!

While waiting for the neurosurgeons, a gentleman brought over a therapy dog. Since I'm not much of a dog lover, my first reaction was to reject the dog. However, the owner introduced Elliot to Brook and she leaned in to pet the dog. He then asked her name and said, "Elliot, pray for Brooklyn." The dog knelt down, put his front paws on a chair and bowed his head. It was so sweet.

The neurosurgeon entered the room and informed us she had an arachnoid cyst that had ruptured several times and there was quite a bit of blood in the cyst and between the left side of her brain and skull. He said the blood severely irritates the brain and the bleed occurred over her speech center... which is why she had a hard time forming sentences and saying words. He said what she was experiencing with the numbness and speech was seizures... one of the ways the brain reacts when it's irritated by blood. He also informed us that due to the size of the cyst, and since she's always had it, the skull in that area was actually thinner. He warned her of doing things where she could hit the left side of her head... reminding her to always wear a helmet when biking and skating.

We asked the size of the cyst and he said they'd talk to us about that later... but that it was big enough that depending on what the team decides, there's a possibility they'd drain it, or remove it. We immediately said we'd shave our heads with her and she cried. He said the first thing they needed to focus on was the blood and giving the body time to absorb it before they considered surgery.

As the neurosurgeon was talking to us, Brook's neurologist entered the room. Dr. Candee "happened" to be at Primary Children's at the very moment the MRI department paged her. She normally works in a different building. Another tender mercy for which I will always be grateful. She spent hours with us taking us to various parts of the hospital, checking on Brook, answering our questions, and helping us avoid the normal hospital protocols.

After several more hours and many more doctors, they decided to let us take her home to monitor her. They gave us a twice daily anti-seizure medication and another medication to give her in an emergency... if her seizure lasts more than 5 minutes or she has more than 3 seizures in 15 minutes. If that happens, we call 911 or immediately get her to the emergency room. They told us to keep her down, that she needs to be constantly monitored, to watch for any changes in her behavior or health, that the neurosurgical team would continue to meet and discuss her situation and that they'll call us on Monday to meet with us on Tuesday. They'll also do a CT scan to check the size of the bleed compared to Friday's MRI results. So for now we're doing all we've been taught, praying and having faith... and waiting until next Tuesday for more information.

How has she felt today? She's doing better than expected. She has a headache and is dizzy (normal reaction from the blood, cyst pressure and medication). How am I doing? I'm so grateful. Grateful the ER doctor ordered the MRI, grateful Primary's was able to squeeze her in their busy schedule, grateful the radiologist saw the cyst and bleed, grateful her neurologist was at the hospital, grateful the neurosurgeons had time during surgeries to review her results and talk with us, grateful it happened on the last two days we had our good insurance and that we'll be able to extend it, grateful for family and friends, grateful for the Priesthood and blessings, grateful to have access to one of the best hospitals and doctors in the country, grateful to bring her home, grateful to hold her all night and listen to her breathe, and grateful to be her mom.

So much love and so many prayers have been sent our way and once again we have been blessed.

Tuesday, June 4, 2013

Another day full of surprises and miracles. An appointment with Neurosurgeon Dr. Walker resulted in a CT scan, blood work and emergency surgery scheduled for tomorrow morning at 8:30. The CT scan showed zero change from last Friday's MRI's. She has an arachnoid cyst that has ruptured causing a subdural hematoma and needs to have a stereotactic burr-hole with drain placement. Meaning... a dime size hole drilled in her skull and the blood drained to relieve pressure and eliminate permanent damage. After talking with two surgeons, they left the room so Brett and I could make a decision. We talked about the benefits, risks and our concerns. We then bowed our head in prayer and once again asked our Heavenly Father to guide our decisions and the doctors minds and hands to provide Brooklyn the best treatment possible. We were at peace as we petitioned God and knew surgery and Dr. Walker were answers to our prayers.

Brook chose to eat at Olive Garden and then she ate steak and potatoes provided by Grandma Donna at 10:30 pm since she knew she couldn't eat after midnight. That girl never wants to miss a meal!

Brooklyn received another blessing and once again she was promised that she would heal. We know we must act and not be acted up... therefore, we're acting with faith and going forward with the surgery and putting it all in the Lord's hands.

Wednesday, June 5, 2013

Walking away from the operating room double doors is heart-wrenching. Any parent that has made the walk down the long white hall to kiss their child and wish them well as they enter surgery knows the feeling of turning their backs and walking away. Faith not fear are the words I continued to have Brook repeat prior to her surgery... and those are the words that came to mind as my stomach knotted and tears formed in my eyes as I let her go. Brett and I clasped hands, then he put an arm around my shoulders and we made the long walk back to the waiting room.

The waiting room is a story in and of itself. So many faces full of worry, fear, anticipation, concern and hope. The parents and grandparents look tired. They've seen their share of sorrow. Time stands still in the waiting room. Every second feels like an eternity when you're waiting for news about your child. When the nurse picks up the phone everyone's head pops-up... listening intently... hoping their child's name is called. The doctor's walk in and out meeting with families and I wonder... How does each doctor feel about performing miracles every day? Do they just get used to it? Does each child affect their lives as they do the child's? How often do they need to share bad news? How do they handle that? Do they know God has blessed them with amazing gifts which constantly bless the lives of others? I watched the doctors in awe.

While in the waiting room Brett was consumed with anxiety. His body trembled and tears streamed down his cheeks. He had to get out. It was as if everything that's going on in our lives hit him all at once. He went for a long walk and when he returned, exhausted and overwhelmed, he sat down, leaned his head back and fell asleep.

The doctor entered the waiting room and informed us the procedure went perfectly. He said they removed a blood clot the size of his index finger and were able to successfully insert the drain. Peace and gratitude flooded my body... and tears flooded my eyes. About 45 minutes later, Brett was able to meet her in the recovery room. I received a text from him saying, "I love her so much." Brett is such an amazing father and I will be forever grateful for his love for our girls.

I anxiously waited for my turn to see her. It felt like an eternity. As the nurse picked up the phone and said, "Parent for Brooklyn Armstrong?" I excitedly stood up and was provided instructions on how to find her. I felt like running! When I finally saw her, it melted my heart. She was so sleepy, yet so sweet. She was soft-spoken when answering my questions and the nurse said how well-mannered she'd been. When they asked her for a drink, she'd say, "Yes, please." and always followed every act from the nurses by saying thank you. I wasn't surprised since she's always so sweet... it's just who she is.

Brook slept most of the day. She woke up around lunchtime and asked for french fries. She ate about half and fell asleep with two french fries in her mouth and one hanging out. Made me smile and nervous at the same time. We had a hard time waking her up to get them out... she was so groggy.

I responded to about 200 texts, emails and Facebook messages throughout the day. So much love and concern for Brook and our family. I cried many tears of gratitude.

Thursday, June 6, 2013

Great news! Today's CT scan showed improved results from Tuesday's scan. Dr. Walker met with us a couple times and was very confident in her procedure and recovery. Such wonderful news and it made my heart sing! Once again we have experienced another miracle for which we will always be grateful. Just as Breann experienced her lip/tumor miracle, Brooklyn has her own brain/cyst miracle. I know both of these trials have increased their testimony of divine intervention. They also witnessed the great love family and friends, on both sides of the veil, have for them. These experiences will make them stronger, more determined and more service-oriented. They will have more empathy and be better prepared to be wives and mothers. God works in ways He knows we need.

Most difficult part today was taking out the drain. That was the hardest she'd cried and the most she'd hurt since we checked in Tuesday morning at 7. It broke my heart. I rubbed her feet and Brett held her hands as they removed the drain and stitched her head. Brook was very angry and as soon as the PA left, she kept saying how much she hated her and called her an idiot. We kept explaining that Sid was a nice lady, and she was being as careful as possible, but that it was her responsibility to remove it. Those things are so hard to explain to a child and have them understand when all they know is that person is causing them pain.

She stayed awake for 9 hours straight. Amazing! She fought sleep several times out of sheer determination to see her family and friends. Such a trooper.

We spent quite a bit of time in the Forever Young Zone making crafts, putting wishes on the wishing tree and enjoying the warm weather in the center patio. My wish? More joy than sorrow. As I walk the halls of Primary Children's Hospital, there is so much joy and so much sorrow. People coming, people going, tired parents and grandparents, sick children... at varying levels, many tears, some smiles. Life isn't fair, but we all do the best we can. We try our best and find ourselves on our knees begging for God's mercy.

Friday, June 7, 2013

The night was much better. More sleep and less interruptions. Brook had a rough morning with nausea and threw up. After giving her some medications to help, her color returned and she became a much happier girl. We saw Dr. Walker, Sid the PA and several nurses... and we get to take her home today! Another miracle! Two days after brain surgery she is talking, walking, eating, watching movies, playing video games... and ready to go home. We are so blessed. I will be forever grateful.

Friday to Friday... one of the longest, fastest and scariest weeks we've experienced.

Monday, June 24, 2013

How is Brooklyn now? She's recovering and very grateful. We met with her neurologist last Thursday and she'll meet with her neurosurgeon next Tuesday. Her follow-up MRI and MRA are scheduled for this coming Monday... so we'll know more then. She still gets dizzy, pale and nauseous... but the doctor's said that's normal due to surgery, medication and blood that's still on the brain... and will be for several more months. Now that I'm not working, I can monitor her and take care of her. Who knew this would be part of the reason I knew it was time for me to be home for awhile... only God.

More to come...

Grandma Vae, Aunt Cheri and cousins decorated our home.

Brooklyn was so surprised and grateful.

Sisters saying goodbye the night before Brooklyn's surgery.

So much love... and so much worry.

Brooklyn trying to make Bre happy and calm her fears.

Mom and Brook waiting to be called back to pre-op.

Notice Elle the elephant. Elle's been with Brook through her past few surgeries and even has her own medical bracelet.

Brook getting a bit more daddy love before surgery.

Going through the pre-op to-do's.

After surgery... and headed to her room.

Brooklyn stayed at NTU at Primary Children's.

Sound asleep as they got her situated in her room.

Ouch!

With the drain.

Without the drain.

The cyst drained blood for over 24 hours.

Me taking care of my baby.

Me loving Brook and Brook loving Elle.

Peacefully sleeping.

Notes from family.

Whitney, Bre, Brook and Grandma Donna.

Brook and Bre playing Xbox.

Dr. Bre was also on duty!

Brett and Bre

Grandma Donna and Bre playing marbles.

Brian, Brett and Brook in the Forever Young Zone.

Flowers for the princess!

Brook made Brett a crown... he was a sport and wore it.

Bre and Mattison... ooh-la-la!

Brook, Cody and Cheri. She really is Superwoman!

Anj, Brook, Cody, Chase, Bre, Maeson and Mattison

The wishing tree

Craft time with cousins!

Wii games... anything to occupy Brook's mind and time.

Going home!

So many friends and family brought cards, flowers, balloons,

treats, meals and more.