After getting Cody and Lilah settled in for the night, I left for home around 2 a.m. We were told to plan on at least a week in the hospital so I went home to try and get a few hours of sleep, pack our bags, and try to make arrangements for the boys at home. I cried most of the way home, and prayed to Heavenly Father to please help me. I didn't even know what to pray for, all I could ask for was help and comfort.
I tried to lay down around 4 a.m. to get a couple hours of sleep, but the more I laid alone in the dark, the more anxious I felt. All I wanted was to be near Lilah and Cody, and to hold my precious daughter.
After a while I decided sleep was just not going to happen. I got up and worked around the house until the morning. I cleaned the house, folded laundry, packed, cried, and prayed. I needed to be ready to leave first thing in the morning to be back for Lilah's first round of procedures. I also thought about my sweet boys still fast asleep, completely unaware of what was happening to their baby sister, or how their life would soon change.
Cody and I had decided we were not going to tell them anything until we had more concrete information.
They both came straight to my room when they woke up like they usually do, and Cole knew immediately something wasn't right and asked, "Where's Dad and Lilah?"
I simply told them that the labs we were waiting on the day before had come back looking a little funny, and Lilah had to go to the hospital to see some more doctors because they were trying to figure out what was wrong with her.
They were concerned and a little confused, but they were brave and they trusted me. I told them I wouldn't be able to come home for a few days, and that Lola (Cody's mom) would be there with them. I assured them everything was going to be OK, and I would call them as soon as we could. I hurried back down to the hospital.
Day Two
1. Bone marrow biospsy and aspiration under sedation.
2. Lumbar puncture.
3. Chemo injection in her spine.
3. Leukemia diagnosis and initial staging.
4. Broke the news to the world.
Lilah, still coming out of sedation.
I got to the PICU just in time as they were starting to get set up for the procedures. They would be sedating her with propophol, so she would not need intubation but would be completely asleep. A large syringe about the thickness of a pencil lead would be used to remove some of the marrow or liquid part of the bone, and then they would also aspirate a part of the solid spongy part of the bone. Both of these would be used to "stage" as well as identify exactly what form of leukemia Lilah had.
Then lying on her side, a small needle would be inserted into her spine to obtain some of her cerebral spinal fluid, which would also be used in staging her leukemia.
At first Lilah was not tolerating sedation well, she was spasming and making an awful choking sounds. The anesthesiologist was just about to call for the intubation tube when she finally relaxed and started breathing. He said it was due to the very enlarged lymph nodes in her neck.
There was a whole room full of people in the pediatric ICU. Doctors, respiratory therapist, nurses, anesthesiologists, all working on Lilah quickly with expertise and care. Cody and I stood nearby watching arm in arm, and a few tears streamed down our faces. It all still felt like a dream, or rather a nightmare. We felt so helpless, we had to put all of our trust in the people in that room to save her life.
It took a couple of hours for her to come out of sedation. We sat near her bedside with hundreds of thoughts just racing through our heads. We answered many phone calls and texts, and continued to try to take care of home and work life as best as we could.
We waited all afternoon anxiously for the results of the test. It felt like forever. We had many visitors that day who brought all kinds of wonderful activities to help keep Lilah happy and engaged during our stay. We had many smiles, and hugs, and tears to go around!
Finally, the doctor came in with the results.
He told us she had pre-B cell ALL (Acute Lymphoblastic Leukemia). If you have to have a pediatric cancer of the blood, this is the one you want to have. It was the result we had been hoping and praying for. So far the results were putting her at the standard risk category, which is the lowest risk.
The spinal fluid also had some abnormal cells that looked like they could possibly be leukemia blasts They would have to send it out for further testing called flo-cytometry in Seattle to determine what they were. This would potentially increase her risk and change her treatment regimen. We would know in a few days.
As a side note, we realized that today was our 13th wedding anniversary. We didn't really know whether to laugh or cry, so we just decided to laugh. And many people would think 13 was an unlucky number, we just decided to call it lucky 13! We think it's lucky because we had done so much work on our family and marriage in the past 18 months that we had honestly never been stronger or happier. We felt like this challenge could not have come at a better time. And we can honestly say it's an anniversary that we will never forget. We felt closer and more devoted as a couple than we could have ever imagined. In my book, there is no better way to represent an anniversary than that.
This was also the day we announced to the world what was going on. Here is my Facebook post from this day.
"Our world has been turned upside down these past few days, as we've learned our sweet Lilah has leukemia. She has ALL, the best most curable kind you could hope for. She has been incredibly strong, resilient, and even cheerful at times. Numerous medical staff have commented on her good nature and spunky personality. I cannot begin to express or convey the outpouring of love and support we have experienced from the village of friends and family who I feel are surrounding us at this time. From meals, to helping to take care of my two worried boys at home, to stocking my pantry and fridge full of food, these all feel like giant weights being lifted with each loving act of service. Lilah was showered with countless cards, stuffed animals, activities, video messages from cousins, and other special things to brighten her day one moment at a time. We even got a cookies and milk delivery to our hospital room to take a moment to remember our 13th wedding anniversary. Lucky 13 is what we are calling it, because our marriage and partnership has never been stronger than this past year. And we know we are going to get through this. We have truly felt the sustaining power of your prayers, and the strength of comfort of the Lord that only he can offer. I've never felt so humbled and grateful in my life, thank you all from our whole hearts."
Our amazing friends from back in the neighborhood! I cannot brag enough about the village of people we have enduring this trial along our side!
Cody's sister Aunt Brittney.
A doctor Barbie, so perfect!
Cody's Aunt and cousins who visited!
First time the boys came down to see Lilah. She was starting to get very swollen here.
Cody's parents, Lolo and Lola.
The nighttime scene. Trying to get Lilah to go to sleep with out a rocking chair was a bit of a challenge.
"We're going on a bear hunt, we're gonna catch a big one, what a beautiful day we aren't scared!"
1. Surgical placement of her Power Port.
2. Start Steroids
3. First Chemo Treatment
This was a day and procedure I felt a lot of dread around. I knew what a port was and had accessed them in nursing school on my cancer rotations. I just felt like she had this perfect little baby body, and I hated the idea of her having this device implanted in her chest to deliver chemotherapy treatments for the next 2+ years. She would be a cancer patient once that was in her body. I shed many tears about this procedure, and felt a lot of anxiety around it.
I spent some time praying alone that night in the hospital bathroom. Sitting on the bench in the shower is where I tried to come to grips with what would be happening a few short hours later.
I prayed to Heavenly Father to help me find peace in my thoughts. I realized I was in charge of my thoughts, and I could pick new ones if I really wanted to. The reality was that Lilah was already a cancer patient. This leukemia had plagued her body many months earlier. Her body was not perfect, but none of our bodies are. We are all imperfect beings. This port was not going to change her in anyway, it was going to deliver life-saving medicine to her. It would save her from hundreds if not thousands of needle pokes and discomfort. It could be wonderful. Maybe I could even learn to love her port. I just tried to open myself up to the idea.
Peace immediately overcame me, I felt so comforted, and I felt like a weight had been lifted. When I came out of the bathroom I could look at her sleeping in the hospital bed with Cody and not cry. I was finally able to drift off to sleep.
Morning came, and they wheeled Lilah and Cody down to pre-op in her bed so she could stay asleep which was very sweet. Although we both felt at peace about the procedure, it was an emotional time. She was in a great deal of discomfort and it took both our efforts to keep her comfortable and calm while we waited for her to be taken back to the OR.
They gave her medicine to help her relax before taking her to surgery. There were no tears when we parted, at least from her! She had her little red surgery cap and oxygen mask on, and she waved good-bye to us.
Cody and I both wept a little, and commented on how humbling an experience it is to put your complete faith and trust in the hands of other people to take care of your baby.
After about 2 hours the pager finally started buzzing for us. We went down to the recovery room to see Lilah. She was not doing great. She was screaming, and hoarse, and her body was puffy all over and her face was red as could be. She was inconsolable. They gave her some pain medication and breathing treatments and ice packs, and with a lot of effort we finally got her to calm down and be still.
She had been poked and prodded and screamed and cried so much in the last 3 days, I didn't know how much more I could take. This was a low moment for both Cody and I. There would be moments when they would come get her labs and have to poke her over and over, and I would just hold her and put my face on the bed so I could hide my emotions. After 3 days of seeing her in so much pain, my coping thresh-hold was getting less and less.
I just told myself I was capable. There was no end to what I could endure, I was willing to endure it all with her. Every pain she felt, we felt it too. Every tear she shed, we were there to shed it with her. Whenever my brain would want to say "how much more of this can we take?" The answer I gave was simply....all of it. We will take however much was necessary.
After a while they took us back up to our room. It was a rough afternoon and evening as she recovered from her surgery. The leukemia made her recovery so much more difficult. She was especially swollen in her neck from her cancer ridden lymph nodes and intubation, her body could not get rid of fluid as her kidneys were infected with leukemia cells. As a result, her blood pressure went through the roof and she was retaining fluid everywhere. She had to do nebulizers with the respiratory therapist every few hours and take some diuretics. And her port site was very sore and painful. They also gave her the first chemo infusion of Vincristine. She was walking through hell and we couldn't take any of it away from her.
It was also this day the oncologist suggested we meet with a nephrologist to figure out why her blood pressure was so high, and they also found thickening of her lower left ventricle on her heart echocardiogram that would need a cardiology consultation. I thought my brain may explode from the sheer amount of information that seemed to steadily pour in.
Aunt Daniele came to pain Lilah's nails! This became a daily favorite of hers!
Crazy side note. These are our good friends and neighbors back at home! We live just a few doors down from each other. Their daughter was also emergently hospitalized overnight on the same floor as us! It was so unbelievable! Neighbors at home, and neighbors in the hospital too. Not exactly what either of us planned for or wanted but grateful to have people like this in our lives!
Later that night her belly got so big and so full of fluid, we had the nurse call the on call doctor. He ordered a CT scan which we went down for around 2 a.m. We would get results in the morning, but the preliminary reading looked OK. Poor Lilah was just so uncomfortable!
We finally got back to the room and tried to get a few hours of sleep around 3 a.m.
Day Four
1. Meet with Nephrologist
2. Recovery from surgery
3. Second Chemotherapy treatment
4. MSTI Teaching
5. Brother's came for the first visit
Lilah's blood pressures had been running consistently in the 150s/90s, which is high even for an adult! The nephrologist wanted to start Lilah on a blood pressure medication (Norvasc) and diuretic twice a day (Lasix). Her CT scan was normal, but she said she was retaining about 2.2 liters of fluid and this would help get rid of it. She educated us that there has never been studies to directly correlate leukemia with hypertension, but about 50% of leukemia patients do have hypertension. So it is not an uncommon finding. We would go home on medication, and it will hopefully resolve itself by the end of the first month of treatment. She was SO sweet with Lilah, and had the most lovely southern accent!
We just continued to rest and recover this day, and continued to have lots of love and visitors!
This was the day when we found out they did, unfortunately, find blasts in her spinal fluid. It increased her risk level just a little from a CNS1 to a CNS2, but not enough to bump her out of the standard risk category. It does increase her chance of relapse by about 5%, so it decreased her cure rate from 90-95% to 85-90% . Something that will now be with her throughout her battle. That 5% was hard to let go of, but we were still grateful she was standard risk and overall her prognosis was very good.
We met with a MSTI nurse this day for about 4 hours. She came and went through a huge binder of information. We were inundated with tons of information about how to care for a child with leukemia. She touched briefly on a broad range of topics including what to do when my other kids get sick, which labs we would be monitoring during her treatment and what they mean, what to do with Lilah when it was time for preschool, how to keep her safe from infection, and all the many possible side effects of chemotherapy treatment from her head to her toes. We went extensively into home care from how to brush her teeth, to what houseplants we could have. It was truly overwhelming. She then took us on a tour of the MSTI center at Boise (Mountain States Tumor Institute). We learned all about what the weekly appointments would look like once we got on our regular treatment schedule.
Day Five
1. U/S on Kidneys.
2. Referral to cardiologist made.
3.Chemo treatment.
4. Power Ports are the bomb.
The medications prescribed by the nephrologist are really starting to work! Lilah's blood pressure is down to 130s systolic, and she's lost 1 liter of fluid which is about 2 lbs. She needs to do this again tomorrow and it should make a huge difference in blood pressure. We made our appointment to follow up with the cardiologist to follow up on her abnormal echocardiogram.
I have come to love her power port already! It is so amazing. What a beautiful invention! I already love the person who designed this incredible device. Every time she needs labs or medicine, no more pokes! I never thought I would be able to utter these words......I love her port!
She is doing very well today. She has gotten some good sleep and is acting more herself today. We are on schedule to leave by Saturday.
Here's another portion of a Facebook Post from this day.
"Lilah enjoys getting her nails painted everyday, bubbles, tossing balloons, going on walks and stepping on the footprints in the ground, coloring, stickers, snacks, watching video messages from cousins and grandparents and aunts and uncles, and most especially being held by her daddy. Her sippy cup and blanket go everywhere we go. The hospital has brought in a musical therapist to sing and play instruments with her, they have played play-dough with her and read her books, and given many high fives and hugs to her. She is very loved by her caregivers. I'm in awe of her strength and resilience through all of this. She has had hard and painful moments, but we've had many happy moments too! Cody and I have not left her side, we've had many laughs with her, and many cries with her, and many sweet and tender embraces with her. She truly is a special spirit of our Heavenly Father and I have felt His love for her and for all his children stronger than I ever thought possible. He has been with us. We have felt his loving guidance all along the way.
The nursing staff and doctors have been absolutely amazing, and so supportive every step of the way. She has the kindest most caring experts overseeing her treatment with the latest most advanced technology available. Every visitor, every phone call text, every single act of service has been deeply felt and appreciate by our whole family. We feel like we have angels all around us, and Heavenly Father has shown us many times He's aware of every detail of what's happening in our lives right now.
Cody and decided early on we were going to document and share her journey. We feel like this is happening for a reason and want our loved ones to journey with us. Love you all!"
A picture of some of the many walks we would take daily! We stopped and stepped on all the footprints, and looked at all the pictures on the walls. We have them practically memorized at this point!
Playing with her friend Brooke, our neighbor from back home!
Visits from cousins!
Visitors really made all the difference for us! We gladly welcomed them all it always brightened up our day or whatever difficult moment was upon us! They always seemed to come just at the right time!
The musical therapis from MSTI. Lilah loved playing all the instruments and singing along to the "Poppy Song!" (Can't Stop the Feelin')
Day Six
1. Platelet transfusion
2. Lumbar Puncture
3. Spinal chemo injection
4. Chemo treatment
5. Boys visit and get education from child life specialist.
5. Bryson Family PARTY!
Lilah got her platelet transfusion and was ready for her lumbar puncture the today. She did much better this time as her lymph swelling has already come down significantly. It's amazing how quickly the chemotherapy is helping! She tolerated sedation well today, and we will get results back in a few days. If we get a clean back poke (meaning no leukemia cells), then we are 1 down out of the 3 that we need to cut back on the lumbar punctures.
She got a more intense chemo today that can cause toxic/allergic reactions. As long as she looks OK in 24 hours that is our ticket home! Along with happy blood work.
I really couldn't get enough of these two sleeping together. Lilah wanted her Daddy all. of. the. time. No Mommy, just Daddy. That's why there are so few of me! She felt so safe and protected in his arms, and sometimes it was all the comfort we could give her. She got lots of Daddy time during this week. And Cody was more than happy to oblige.
Brushing Daddy's hair!
We were having such a good happy morning before the last lumbar puncture we decided to take a few pictures! Lilah was in such a good mood!
We realized this week that Lilah will soon be losing all of her hair. One of my most favorite things about her! Her beautiful curly locks that everyone notices everywhere we go. I am just going to snap as many of these as possible right now!
Aunt ChrisAnn and her family just happened to be visiting from France during this time! She brought a little Hippo all the way from Paris just for Lilah. It became known as "Dancing Hippo!"
Meeting our cousin Prudence for the first time. Lilah just LOVES babies!!!
Child life brought in this great play mat so when the boys came they could sit and play together.
Brother time was always the best time. It was so incredibly uplifting and healing to all three of them.
Last lumbar puncture for this week!
Her good mood continued into the PICU, and she was giving us the funniest little faces!
Finally all done! Just waiting for her to wake up!
Cole and Beck came down for a visit this evening! A child life specialist came to our room and had a very cute little presentation all about leukemia, for the boys to gain an understanding of what was going on inside sissy's body. She talked about all the different cells in the body, what their jobs were, and the reason why they weren't working in Lilah's body. It was such a great educational experience for them.
We then ordered in some dinner and had it delivered straight to our hospital room. We had a perfect little family picnic, and even wheeled in an XBOX for the boys to play on! It was so amazing. It was therapeutic for all of us to be together, and a perfect precursor to us going home the next day.
A post from Facebook:
"Lilah misses her brother's, and her brothers miss her! And to see them embrace each other was like having a glimpse of eternity. It reaffirmed to me the strength of their bond, and the forever nature of their love for one another. It was better than any medicine could have made her feel.
And despite all the difficulty around us, we still have laughs with her! Making silly faces together, making her hippo dance, pressing the button on the thermometer to shoot it across the room after every temperature, high fives and stickers from the nurses, it's all about the little things that keep it light hearted and positive. She is the greatest example of that. We continued to get comments from all the staff about how much they enjoyed her spunky sweet personality, and Cody and I can't help but smile and know that Heavenly Father made her just right, and blessed with a disposition that would carry her, and us along this journey."
Day Seven
1. Pack up and go home!
Last breakfast in the room, Lilah is starting to get her appetite back.
Last morning stroll around the unit.
I spent just a few minutes documenting the room. It is a place and a week that will be seared into our memory forever.
I think I said it best in my Facebook post:
"As we were waiting to be discharged, Lilah fell asleep, and Cody and I had a minute to talk and connect, and reflect on everything from the week as well as what we had ahead.
As we packed up the room it was truly incredible to think about all that had transpired that week, all that we went through, and also all the love that was shown our family. At the beginning of the week we knew our baby girl was sick, but we didn't know why or how to help her. After several days we had all the answers and a plan to heal her completely. Although the road is long and daunting, we are so grateful for modern medicine and how by the end of the week we were leaving with a child who had her rosy cheeks and smile back. It's truly a miracle.
It was a busy morning making all the last minute preparations to have our sweet strong girl come home. We felt excited to be together again as a family, and have all the comforts of home, but we also felt a great deal of anxiety about having the confidence to care for her on our own.
It was strangely poignant leaving our room. It was a place where we had experienced some of the lowest of lows, as well as some of the most tender of mercies. We had truly been changed. As a mother and father, husband and wife, and as a family unit we would never be the same. We could feel it was the beginning of our journey. Although scary and unknown as it may be, we are very aware our Savior knows exactly what is ahead and has walked this path already for us. We have faith He can show us the way.
