One Year Cancer “Free”

Hey everyone!

Yes, that’s right! Can you believe it’s been a year since my last chemo?! It’s crazy how fast time really does fly!!

So in my last update I was dealing with the after-effects of the chemo still. But now, a year out, I am finally feeling more like myself… chemo-brain has backed off a bit and I have been having pretty good energy- considering I’m constantly chasing around a 20-month old! I’m loving my work/mom-life balance although it seems like I don’t stop. (I finally grabbed my laptop when Ali went down for a nap so I can update you all!) Yes, we have the green light to try for Baby #2 but first we have a trip planned to Dominican Republic and definitely want to wait at least until after that! I have the travel bug BIG time and cannot wait to finally get another stamp in my passport- it’s been a long while. And Ali gets to have her passport stamped for the first time!!

So no Baby #2 announcement BUT I HAVE A NEW BROTHER!! Yeah you read that right: Christmas Day I found out that I have a brother I never knew I had! You see, when my mom was 15 she got pregnant and knew she couldn’t raise him so she made the most loving decision to place him for adoption. A week before Christmas, she received a letter from Lance. What a relief for her- knowing her son was alive and well… more than well actually. Lance lives in Iowa and is married to a lovely woman and has two beautiful daughters and one very athletic son… so I have another sister-in-law and two more nieces and one more nephew!! Lance flew down in January to meet us all and it was like we always knew him- he just fit right in! He and my other brother, Derek, are so eerily similar in humor and looks- it’s crazy! His whole family is flying down this summer and I cannot wait to finally meet them! Well the news covered his homecoming in January and you can see that news clip here!

It’s been really cool to see how the Lord continues to use our journey (and all of its twists and turns!) to create awareness and encouragement for others. In addition to the outlets we’ve been featured in before (found in this post), most recently our story was featured in CURE Magazine (here) and The Bump (here) . We keep praying that the Lord expand our territory so we can continue to share our miracle with others. As I’ve said time and time again, our story is so much greater than us. YOU have a story too! Give your story a voice- you never know who’s listening in.

Hey! Remember us?!

So yeah, it’s been awhile! Just wanted to give you a brief vlog update!

 

Also, here are some awesome pictures of Ali’s first birthday party thanks to the amazing talent of Gigi from Wee Love Photography! 💗😘

(Yes, she had the same birthday outfit in peach and pink! lol)​

I cannot even begin to count how many times a day I look at Ali and thank the Lord for her. She is such an amazing girl and we are so blessed. So I am going to go now and cherish every moment with her… after all, she will never be this young or this little again.

Cancer “FREE”

It has taken me a while to type this- there are just so many thoughts and messages I want to relay since it’s been so long but I’ll keep it fairly brief since many of you have been keeping up to date on social media.

So as the titles says I am now Cancer “FREE”- this is incredibly exciting! But as surreal as the diagnosis was, being done with it all is just as surreal. This past year has been constant tests and doctors appointments; I’ve been placed in a protective bubble and learned to be comfortable in it. Now, the bubble has in essence popped leaving me exposed to – well, not only germs, but to the aftermath of cancer. Some people assume that because chemo is over you instantly go back to normal. But “normal” is a funny word to me now. I’m not sure what normal is. Being that so many of life’s circumstances changed all at once it’s hard to place the effects with the causes. I know I don’t have as much energy as I did pre-pregnancy/cancer but I know that comes with motherhood (and being newly back at CrossFit!). I definitely bruise a lot easier than before which is a constant mental struggle of telling myself not every bruise means cancer or relapse. So I like to believe I am cancer-free but the reality is that though I don’t have cancer, it will forever be a part of my life and a part of my story. I don’t regret it and I’m not resentful- it’s just hard to reconcile the “free” while still experiencing some of the ties. So I keep reminding myself to extend grace to myself- when I get tired faster in CrossFit or can’t lift as much or when I look in the mirror at the added baby weight or when I long for my long hair but keep having to cut it to make it look un-awkward or when I forget things due to chemo brain and mommy brain… I may not be where I once was but I plan on surpassing that!

I am really looking forward to seeing how much more the Lord will use this experience to help give hope and encouragement to others. It’s been so amazing to see the response from the news interviews (here and here), Leukemia and Lymphoma Society blog post, documentary, and this weekend we will be speaking at a friend’s church.

All of us have a story- these stories are meant to be shared to help others (and I’ll let you in on a little secret- sharing your story also helps your own wounds heal!). So I challenge you to break your silence. Swallow that lump in your throat called “fear” and give your story a voice. You’ll be amazed at the lives it touches.

Psalm 107:14 “He brought them out of darkness, the utter darkness, and broke away their chains.”

Rounds 4 & 5: Julianna vs Chemo

Well I think we have found our groove in this new-parenting, back-to-work, chemo-every day new routine! Allan and I have a system of rotating night feedings and bottle cleaning that seems to be allowing us both time to rest up and enjoy our growing baby girl. Time seriously passes by way too fast. Looking back at pictures from just a couple months ago is giving me all kind of feels! Ali is just amazing! Everyone that meets her says the same thing; she has such a sweet spirit and old soul about her. She loves socializing and people watching. We go days without hearing her cry which is an added bonus. She is 5 months now and her first tooth broke through already, she started grabbing her toes and eating them, she got her ears pierced, sings herself to sleep, and has found her sweet giggle. We attended our first Light the Night Walk for the Leukemia and Lymphoma Society and they featured our story on their blog (https://www.lls.org/blog/a-special-delivery-for-mom-with-cancer), we dedicated her at church, she celebrated her first Thanksgiving and Christmas… it’s been action-packed to say the least! And now we’re gearing up for her first flight to California! We’re so excited to be able to travel once more.

Treatment has been going well, with the exception of the past few days. I thought I didn’t need the daily IV zofran and was doing good without it for a week then it hit me hard the day before Christmas Eve and is still toying with me. Thank you for your faithful prayers- please don’t stop now- I am praying this all goes away before our trip! Well this is my last week of my fifth round and February will be my last month on treatment; it’s so close I can taste it! I have been doing a lot of reflecting on this past year. To think a few months ago I spent a week in the ICU, needed help walking and showering, was learning to breathe on my own again, was down to skin and bones (plus my baby bump), got winded walking a short distance, was bald, gave birth, went back to work… 2016 was very bitter and extremely sweet. I am looking forward to 2017 being a year of celebration.

I continue to be humbled by how the Lord is using our journey… as I was typing this in treatment I heard a young girl next to me crying. As it turned out it was her first treatment after just having been diagnosed with Hodgkins Lymphoma at 22 years old. I asked the nurses if it would be okay for me to talk with her and they insisted saying she was very nervous. So I made my way over to her and she asked lots of questions, we prayed, hugged, and I left her with a smile and my phone number. Then, there was an encounter while Christmas shopping- one of the associates asked me about my picc line and I proceeded to tell her my story. Her eyes filled up with tears. Come to find out she an her husband have been battling infertility and she was diagnosed with cervical cancer last year. They were able to perform surgery and do radiation without chemo, however, she had just gone in the day before I met her for another biopsy of something suspect. Please keep Val and Vicky in your prayers as well. I know the Lord will continue using opportunities like these to encourage others through my journey. And He is so faithful that he will use you to tell my story to those hurting. My mom was grocery shopping with Ali when a lady stopped her to comment on Ali’s cuteness and my mom proceeded to tell her my story. Her eyes welled up as she explained she had just moved down to South Florida to care for her young daughter who was just diagnosed with ovarian cancer. So be prepared- the Lord will use you to speak hope into someone’s life- be obedient when you feel that nudge. It’s often very uncomfortable to initiate a conversation like that but you will be surprised at what the Lord does when you’re pushed out of your comfort zone.

I am overwhelmed by the continued prayers and outpouring of love. I keep running into people who have been faithfully praying for Little Bean and I without ever having met us. It moves me to tears to see all the support we have received. So, again, thank you. I am so grateful to have you in my army throughout this battle.

Here are some pictures from the past few months, enjoy!…

 

Round 3: Julianna vs. Chemo & New Parenthood

Well, Round 3 was pretty uneventful which is fine by me! My treatments have changed since I’m not pregnant anymore; I am now being treated with Arsenic Trioxide (yeah, that “arsenic”!) and Tretinoin (ATRA). Instead of fours days of treatment like Rounds 1 & 2, treatment is every day (except weekends) a month on, a month off until February 2017. The schedule is very demanding, the days are long, and I miss Alianna every second I’m not with her! So I was REALLY looking forward to my month break…

My break started off great: I made it to CrossFit a couple times and was feeling great, I took some days to rest up and relax, went on date nights, then bang! my second week in I got shingles and shortly thereafter Little Bean came down with Bronchiolitis and Croup. It’s the most helpless feeling seeing your little one sick- although she was all smiles, it killed me to see her all stuffy and coughing. And then my break finished off with Hurricane Matthew preparations! …Sometimes you gotta laugh to maintain your sanity!

My poor baby =(

Parenthood is the best!! Sure it helps that she’s the easiest and cutest baby ever (I’m sure every parent boasts that but I’m serious! ha ha). She gives us 5-6 hours every night between feeds, she’s all smiles in the morning, we can go days without hearing her cry… yes, I know that can all change but I am enjoying every second of it now! She just turned 3 months on October 12th! She went for her first swim in the pool and was chilling until she got splashed in the face. She is vocal as ever, loves seeing herself in the mirror, and loves to smile. At close to 9 pounds, she is still in the less-than-10th-percentile for growth but that’s normal for our petite family! =)

Round 4 started this past Monday and it did not set a good tone. It started with getting my PICC line inserted again (which is routine). However, as I got wheeled into Intervention Radiology, the memories flooded back. The last time I was wheeled to that very spot was when I went for my first bone marrow biopsy and that same day I was diagnosed with Leukemia. It felt as though a lifetime had passed by since that moment; so much has changed since that day. Then, the nurse practitioner put the lidocaine in my bloodstream (which has epinephrine in it) and I had difficulty breathing, my heart was racing, and I was starting to black out. Thankfully, they observed me and I recovered. According to my other nurses, people can stop breathing when that happens as lidocaine in the bloodstream can be very dangerous. And the cherry on top was when another nurse forgot a very important part of my PICC line to prevent it from being pulled out of my arm so I had to get the dressing changed by another nurse which is very painful since I’m allergic to medical adhesive. I couldn’t wait to get home to my baby and my husband; I just wanted to be done with the whole thing already. Then, the day ended with a massive migraine. Thankfully, not every day is like that. This round seems to be off to a rough start as I haven’t been feeling as great as before.

Also, I started back at work this week! I am incredibly blessed to have a place of work that has supported me these past six months and that allows Alianna to come with me to work some days! This is definitely a transition period for us as we juggle work, parenthood, and every day treatments… Please continue lifting us up in those powerful prayers!

Psalm 54:4 “Behold, God is my helper; the Lord is the upholder of my life.”

 

Cutest co-worker ever!

Introducing Alianna Love…

Our miracle “Little Bean” arrived Tuesday, July 12, 2016 at 4:17am, weighing in at 4lbs 10oz, 18.9 inches long and perfection from head to toe! This doesn’t seem real…how is she: here, unharmed, healthy, adorable, ours?! Allan and I keep reminding each other that we actually get to keep her! This journey through infertility, medical scares, ICP and leukemia has definitely had its fair share of extreme highs and lows (and more to come) but how does it possibly get any better than this?

I’ve had many moments of bawling in disbelief that we made it to this point. As we were leaving the mommy/baby unit on the 8th floor of the hospital to head home, we got to the elevators and I burst into tears…that’s the same floor that I spent April and May in the oncology unit wondering if I’d ever make it to the other side to mommy/baby, let alone get to take a healthy baby home with us… the odds were stacked against us. Plain and simple: this is just an absolute miracle. The same God that rose Lazarus from the dead and healed the sick and lame, rescued my baby girl.

I go back on August 8th for more blood work- this will determine when and how long my next chemo treatments will be. My last blood work in June, showed that I am in remission- PRAISE JESUS!! Part of protocol is that I would still have to do maintenance rounds to ensure the cancer is completely annihilated. I noticed myself getting anxious as I thought about the upcoming treatments I will be going through and as crazy (and, admittedly, messed up) as it sounds: I realized that I am scared to go through treatments without her. Of course I am so relieved she’s safe outside and doesn’t have to be exposed to the treatments but it’s like she made me extra brave; her presence gave me the focus and fight I needed to persevere. It was as if she gave me super powers… and now I have to shift my focus on fighting so I get to see her grow old.

I am happy to report: Daddy is a natural and completely wrapped around her little pinky! And he is well on his way to conquering his fear of poopy diapers and mastering the art of the swaddle! Alianna is doing amazing! Everyone that meets her is amazed by the physical strength of her little body (we joke that it’s all the steroids I had while in ICU). She will be following up with the  cardiologist for a few years to come just as a preventative. This little girl has changed my world.

Thank you all for your support and prayers. Please know that each of you carries a piece of our story with you. Your encouragement and pleas on our behalf have gotten us to  where we are today. I ask that you pray for my continued strength and resilience- I am determined to beat this thing once and for all!

Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think. -Ephesians 3:20 (NLT)

The Birth Story…

I went in on July 10th at 37 weeks to be induced as is standard care for Intrahepatic Cholestasis of Pregnancy to avoid the risk of complications later in pregnancy. I had my birth preferences in hand and was equipped with all my HypnoBirthing materials ready to take on labor au natural (besides the fact I had to artificially trick my body into labor)… They started cervadil around 9:30pm and almost immediately I started having contractions every 1-2 minutes this lasted 12 hours and by the end my cervix was soft but I wasn’t dilated at all. So we chose another 12 hour round of cervadil which made my contractions every 30 seconds-2 minutes. Not having slept in over 24 hours, my body was exhausted and I still had the home stretch in front of me. I was focused on my goal of healthy mom, healthy baby which meant avoid c-section at all costs (due to my health risks). Little did I understand that induction can be a real game changer in terms of my birth preferences and pain tolerance. After all, I had warmed up with two unmedicated bone marrow biopsies using my HypnoBirthing techniques successfully. But after 21 hours of no pain meds, I knew it was time for something since my body still wasn’t dilating enough and I was physically exhausted. That’s when the epidural came in and saved the day (not on my birth preferences)! lol A few hours later I was dilated to 7.5cm but stalled so they gave a little pitocin and ruptured my membranes at 3am on July 12th. By 3:50am my body was already pushing and her head was visible. I was trying to breathe through some contractions to give our moms more time to arrive at the hospital but this little bean was determined to make her debut at 4:17am! My mom and sister arrived minutes before delivery and my mother-in-law arrived just a few short minutes after. Alianna had the cord wrapped around her neck and it wasn’t long enough for the doctor to unwind it so he had to cut the cord (there went the delayed cord clamping from my birth preferences). Then she didn’t let out a loud cry at first so the nurse had to use the bulb syringe in her nose and mouth and rub her body using a blanket thus removing some of the amazing vernix (both against my birth preferences). Moral of my life story: nothing ever goes as planned but it always goes as it should! And mission accomplished: healthy mom, healthy baby!

Best feeling ever!

Love at first sight- Alianna & Daddy

So yummy!

We get to take her home with us!

All day snuggles

Last time we were on the patio together was two days before I was diagnosed with Leukemia. So grateful I get to be out here with her on the other side!

Slice of Heaven in my arms… thank you Lord. You are perfect in all of your ways.

When I found out we were having a girl I dreamt about a romantic/flowery/forestry maternity shoot. Then, Leukemia struck and I lost all my hair. I wasn’t sure it would be possible to match the beauty in my dream without any hair. And then, I saw this photo…it completely exceeds that dream! This photo captures the true beauty of unconditional love, sacrifice, and the anticipation and expectation of miracles fulfilled …and that outshines any bald head! Photo courtesy of UDS Photo

https://www.facebook.com/gigi.herrera.79/videos/1199785243379253/

A HUGE THANK YOU to @migzsosa and the 8am @crossfitsiege crew for making this girl’s dream come true!! To @gloriapelo for your artistry and generosity- you are amazing! And to @gigiudsphoto , Olivia, and @marthaudsphoto of @udsphoto: you captured what I thought to be impossible. Thank you for your time, generosity, and bringing my dream to life. You have all blessed us so much- our hearts are overflowing! 

Our amazing CrossFit family made a WOD in honor of Alianna and before each class they said a prayer for our little champ:

We love and appreciate each of you!

Love, Our Family of 3

Round 2: Julianna vs. Chemo

Well since the last post, I…

1. Celebrated my first Mother’s Day in the hospital complete with a huge yummy breakfast and beautiful red roses.

2. Appeared on a local news station to share our message of hope. Here’s the link:

http://www.nbcmiami.com/news/local/Faith-to-Fertility-One-Couples-Journey-378422851.html

3. Was released from the hospital for a week and a half. Our first stop was the beach for dinner…

4. Shaved my head…and his!

5. Celebrated Little Bean at our Baby Shower… this little one is SO LOVED!

6. Went back into the hospital this past Monday for Round 2 (and this is where I’ll pick up…).

Our week and a half “break” was so nice! We didn’t do anything extravagant, in fact, we did a lot of errands for the baby shower, had a lot of doctors appointments, and got things ready in the nursery. But it was so nice to be in my “normal” environment. Sure there were some modifications I had to make- like learning to drive the electric carts at Wholefoods and Target- not as easy as it looks! But we took in all the “little things” we would soon miss in our next three-week stay for Round 2.

So on Monday morning, Allan dropped me off at the front entrance so he could park in the garage while I admitted myself for Round 2. I walked through the automatic double doors, got in line for security, then my eyes welled up with tears and I turned around and walked back outside. I knew it would be three weeks before I would feel the warm South Florida sun on my skin or be on another floor in the hospital other than the 8th, but most of all, I knew what was ahead. Thankfully, there was a secluded prayer garden nearby so I plopped myself down on the bench and had a good cry- just God, Little Bean, and I. Then, I wiped the tears away and told myself to put on my big girl panties and in the double doors I walked again. We got settled in fast so I could get the PICC line in and chemo could begin that afternoon. One of my oncologists walked in shortly after and told me that he spoke to my other oncologist about me going home on Friday once I finished the 4th treatment of Round 2 as long as LB and I were good. We were definitely surprised by this since we had three weeks set in our minds and as uncomfortable as hospitals are, there is comfort found in having around the clock health professionals for us. He went on to say that I responded better than hoped for in Round 1 so they’re very optimistic. The previous bone marrow biopsy was only able to detect mutated cells on a molecular level but very very little and no telling if the abnormalities were malignant or benign (the numbers were somewhere around .04% mutated compared to 70%+ when diagnosed- PRAISE THE LORD!!). LB and I remained in good health and we were sent home late Friday! Woohoo!!

Please pray for us in the couple weeks to come as my numbers drop and that’s when I’m at most risk for sickness and infection. I still have to remain isolated and I have multiple doctors appointments everyday but being home keeps me stronger and healthier. Besides, I have a really good looking nurse who takes care of my PICC line daily (and I happen to be married to him!)! And please, please continue to pray for the protection of Little Bean- she is so fierce!

Thank you all for your continued support whether through prayer, encouragement, finances, household help, you all mean the world to us. And I don’t know if I can truly emphasize the strength you all give us. We have the BEST family, friends, and community. We love you!!

Romans 5:1-5 (ESV)

1 Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. 2 Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. 3 Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.

“You have Leukemia.”

The last sentence of my previous post read: “God will be glorified through the ups and downs- I can’t wait to meet this little world changer!”

How telling that would be for the countless days to follow…

The day after my previous post, I woke up with flu-like symptoms and a fever that wouldn’t go down. My OBGYN admitted me to the hospital after I walked into her office and nearly fainted at the front desk- my heart rate was 147 and fever 102.1. They observed me for 24 hours at the hospital, gave me 2 steroid shots for Little Bean’s lungs, my fever and heart rate came down, I tested positive for flu type A, and negative for fetal fibronectin (pre-term labor); things seemed to be under control and they sent me home. The next day I enjoyed an hour of sunbathing my belly in the beautiful South Florida sun while listening to worship music with Little Bean, and my temperature stayed at 97.9 all day. However, the next morning I woke up with a 101.7 fever and my heart was racing again. My OBGYN urged me to call the hematologist’s office to let them know I was experiencing tachycardia and I needed an emergency appointment. It was a shot in the dark as I had been calling every other day to try to get my appointment pushed forward since my blood levels were all off. So I called and was again told there was nothing available till the end if the month. Then I decided to call one more time to ask another question. This time another person answered the phone and told me to come in at 1:20pm- I was shocked and clarified who I was. She said she knew and to just come in. Well I wasn’t going to argue anymore… We got to the office (which is in a local hospital) and as soon as the hematologist took a look at the trend in my labs, his eyes got wide and he admitted me right away saying I needed a bone marrow biopsy.

It took all night to get admitted and they found out I had H1N1 and pneumonia so they started treating that in the meantime. The following day I went in for the bone marrow biopsy. The doctors thought I was crazy since I refused sedatives for the procedure wanting to protect Little Bean… what was supposed to be a “minute-long procedure” turned into 15 minutes as they had to keep changing locations to get a good sample of bone marrow- it was uncomfortable but I just breathed through it using my newly learned hypnobirthing techniques while listening to Hillsong. They told us it would take a week to get the full results so I just assumed they’d give me a transfusion to increase my numbers, control my fever, observe me for a day or so and let me go home to normalcy.

Well, just a few hours after the biopsy (around 9:30pm), a perinatologist came in and she soon realized by the care-free atmosphere that she would be the first to break the news to us, “I am so sorry to be the one to tell you, but you have Leukemia”. We were stunned, shocked, not expecting that one at all. Allan felt like he was going to pass out; I can’t even imagine what was going through his mind. He and my parents stood by my bed side like deer in headlights as I laid there and told myself that I was going to be okay. Little Bean was going to be okay. We were going to be okay. The perinatologist said the oncologist was coming back from Miami to explain everything to us (he got the call of my results on his way home so he put his kids to bed and returned to the hospital). They stayed with us until 1:00am explaining Acute Promyelocytic Leukemia to us and answering our questions, then the chemo started as they left the room. APL is known to be highly aggressive but thankfully it’s also one of the most curable. While I am typically the most researched about my health, I chose not to discuss the side effects with the doctors and I informed the nurses not to ask me the list of questions when they see me “are you nauseous, in pain, etc?”; I would tell them if I didn’t feel myself. I knew I had no control over the treatments chosen or what was to come. I had no choice but to trust the doctors with me and my daughter’s lives since we didn’t have time to mess around; a delay would be life-threatening for us both. And knowing the side effects wouldn’t do anything other than make me worry about getting them.

The next two days we made family and friends aware–hearing ourselves tell others that I have cancer was so surreal. With every message I sent, I felt like I was dropping bombs one by one… I mean, how do you respond when a loved one tells you something so devastating – especially during a time that is supposed to be so full of life and celebration. I couldn’t help but feel horrible with each text I sent.

The following Monday I.V. chemo began and I have since completed all 4 treatments of the first round. Honestly, I was feeling great- doctors were shocked! My biggest complaint was severe gas pains in my stomach for several days- those would keep me up at night in tears but other than that, I was just tired (and still am) from the lack of sleep…you would think hospitals would understand the concept of rest and recuperation but the days are jam packed with treatments, tests, consults, vitals, meds, and blood work at all hours of the day and night and tons of doctors for Little Bean and I. Our door is constantly revolving but getting to know all the nurses has been real fun and such a blessing.

Well fast forward to April 21st, I was having trouble talking without coughing before bed and every time I tried falling asleep I would wake up gasping for air. I woke Allan up around 11:30pm to get the nurse—the next 6 hours everything changed. People were rushing in and out, tests were run one after the other, they put me on oxygen and breathing treatments, the rapid response nurse came in—needless to say that was a sleepless night. They rushed me down to ICU as I started coughing up a lot of blood (a rare complication with one of the chemos I am on). The next few hours are blurry even though I wasn’t sedated at all but the next thing I remember is an anesthesiologist, OBGYN, and a whole team of labor and delivery nurses showed up and started setting up my room with an incubator and surgical equipment. They explained to me that because my oxygen was desaturating, they’re preparing for a c-section since Little Bean was of viable age and if I continued to crash they would need to get her out. They were standing by to intubate me but I looked over at the intensivist doctor and told him stubbornly he wouldn’t be needing to do that; I’m fighting and I will not give up – he chuckled not knowing how serious I was (He later informed me that 30% of people die of the same hemoptysis (coughing up blood)…glad he didn’t tell us that in the beginning!). Little Bean remained safely in my womb and I coughed up the remaining blood for a few days to follow and spent a week in ICU before transferring to IMCU for a night. While in ICU, I was bed-ridden and my muscles have atrophied down to nothing but thank the Lord Little Bean is getting stronger everyday!

This past Friday I came “home” to the oncology unit and yesterday I weaned myself off the oxygen. Hopefully I will get to go home next week for a week-long break before my next round- please join me in praying for this… you don’t realize the little things you miss when you’re in isolation for a month–morning prayer walks with Little Bean, the feel of the sun on your skin, human interaction, fresh air, your bed, running water (ICU didn’t allow running showers), seeing peoples’ smiles (everyone I come in contact with has to wear a mask), physical touch, home-cooked meals, fresh berries (not allowed to have), the list can go on but the most emotional part for me to deal with has been these past few days as my hair has started falling out in clumps. Believe me, I know amongst all the side effects I could be having, hair loss is the least to worry about- but it was the “one thing” that I had asked to not happen- my whole pregnancy I was waiting for my belly to grow and I dreamt and pinterest-boarded maternity, baby shower, and birth photos but now I won’t look like myself when my belly gets real big or when I bring my little angel earth side. So I’ll cry the tears necessary for healing with each clump that falls and not get discouraged. After all, there are so many blessings that have come at this time: a healthy active baby girl who’s still safe and sound in my womb, incredible family support, amazing friends that have sacrificed time and travel to support us, generous donations from loved ones and complete strangers, blood and platelet donations, quality time spent with Allan (yes, we still have “date nights” in my hospital room!), getting to encourage the nurses and have conversations with them about the plans God has for them… the blessing list is definitely longer than the things I miss list… You all have been such a godsend to me at this time. I know there are countless messages I have yet to read or respond to, I promise, I’ll get to them! But the outpouring of love, support, prayers, encouragement has been nothing short of everything we need at this time.

We have received many requests from people asking ways they can help, so here is a list of the resources friends and family have set up to meet our needs during this time:

1. Prayer is SO POWERFUL!! Please don’t underestimate it’s power- we need it and feel it constantly! Romans 12:12 “Rejoice in hope, be patient in tribulation, be in constant prayer.”
2. Donate Blood or Platelets in my name!– I have had countless blood and platelet transfusions to keep Little Bean and I strong and safe! Every time they place them through my PICC Line, I say a prayer for the generous donor- most who don’t even know me! It doesn’t matter if your blood matches mine, regardless if it goes to me specifically, it will help someone in my similar position who may not have an army of support around them. So if you’re interested and if you live in Broward County, visit a OneBlood location nearest to you (not the mobile trucks). You just give them my name and my information is already in their system…you can contact me for more information if needed. A HUGE THANK YOU to all those that have already given!
3. We have been so moved by your generosity on our YouCaring.com fundraising page that was set up by family to help relieve some of the financial burden. It is such a blessing to know we can breathe a little easier when it comes to all the expenses coming our way through long hospital stays, chemo treatments, Little Bean’s delivery, loss of income, possibly a wig (since my insurance is refusing to cover it)… we try not to think about the medical expenses of it all but it’s a lingering thought in the back of our minds- so thank you for easing some of that for us!
4. Share our story! You never know what someone is going through and we long to be a beacon of hope to people who are suffering. We don’t want this journey to be in vain so please- put our story out there for others; we’re meant to do life together which includes the good, bad, and ugly!

*Please note: visitors, flowers, and fruit aren’t allowed at this time. But your prayers are needed and so appreciated!

We love you all! God bless you BIG time!
‪#‎prayersforjuli‬

A double reminder of God’s promises outside my hospital window.

Platelets (aka lemonade) going in…so thankful to the donor that supplied them!

My sister giving me the live-saving gift of blood.

Got water-boarded by that ventilator more times than I care to recall in the ICU…

Little Bean is growing!! Mommy got to walk for the first time in a week!

When your hair starts falling out in dreads, it’s okay to treat yourself to coldstone…

Bed rest…Boo…

Well, one thing is for sure, this Little Bean is going to be something fierce! …All of the opposition she’s had on her journey to us so far, but she keeps fighting to arrive safely.

So let me back up…

We had our 20 week anatomy scan 3 weeks ago…she’s perfect! She was putting on a little show for us and then the tech surprised us and said “Let’s see how she looks in 3D and 4D” and she grabbed the other wand…we were so amazed! We definitely were not expecting to see her in such detail! (We know places charge big bucks for those so we weren’t going to do one but, surprise!)

What a little miracle! I think she may have daddy’s chin and lips! 

I was in a daze afterwards, Allan kept asking if I was okay because I seemed out of it. I just couldn’t believe I got to see her in such detail- I wasn’t prepared for that surprise!

Then we fast forward a week and half to last Tuesday, I used the bathroom in the morning and noticed some pink spotting that got heavier and red. Of course, that’s nothing you want to see in the second trimester. Thankfully, I had both doctors on text and was able to get in with my Maternal Fetal Medicine doctor’s office first. Gotta tell you, the wait in the waiting room seemed like an eternity. I could feel movement so I knew she was okay at the moment. Finally, they got us in and we had the same ultrasound tech as our 20-week scan. We told her what was going on and she comforted us as she performed various tests. Thankfully my cervix was closed and then she moved on to Little Bean where we saw her moving and she had a strong heartbeat. Tears of joy flowed from our eyes! Everything looked great! Then, we waited for our consult with one of the doctors (since mine was out of town). She was really sweet and said the ultrasound looked great, and while spotting is “common” it is not “normal” so we need to monitor it. She went on to say that she is concerned about my severe anemia (hemoglobin level is 7.8, yikes!). It may be B12 deficient anemia since my other levels (MCV, RDW, etc) are elevated. So they’re sending me to a hematologist to see what’s going on.

Other good news is the the medicine for the ICP liver disorder seems to be doing it’s job; it’s brought down all my liver and bile acid numbers! I’m meeting with the MFM next week to discuss our continued plan of action.

Well, this brings us to yesterday… I went to the bathroom mid-day and noticed light brown spotting. So I called my OB & MFM doctors both of which are out of town- but were still so helpful. They put me on bed rest and sent me for more blood work yesterday. My OB is also sending me for a fetal fibronectin test next week since preterm labor is a side effect of ICP and she’s also considering giving me steroid shots to allow Little Bean’s lungs to mature faster. She says we need to be as preventative as possible since this is a critical time in pregnancy. I am very grateful for a doctor that is proactive!

So please continue to keep us girls in your prayers- it’s been quite the eventful pregnancy thus far but I count my blessings with each of her tosses and turns I feel. God will be glorified through the ups and downs- I can’t wait to meet this little world changer!

Xoxo, Julianna

Our Baby’s Life Has Been Saved

Goodness, I’m not sure where to begin… the past 48 hours have been an emotional blur.

To be brief: Wednesday I was diagnosed with a rare liver disorder called Intrahepatic Cholestasis of Pregnancy (ICP).

Risks when ICP is left untreated:

• Pre-term labor/delivery
• Fetal Distress
• Meconium Passage
• Respiratory distress syndrome (RDS)
• Failure to establish breathing (sometimes called fetal asphyxia)
• Maternal hemorrhage
• Stillbirth (Intrauterine Fetal Demise/IUFD)

Intrahepatic Cholestasis of Pregnancy (ICP) is a liver disorder of pregnancy in which bile flow is impaired within the liver itself. This leads to elevated bile acids in the blood, and frequently elevated liver functions as well. Elevated bile acids have been shown to pose a risk to the unborn baby. ICP can occur at any point in pregnancy. It most often occurs in the third trimester, but has been seen as early as six weeks pregnant. -ICPcare.org

The Back Story: I started following an adorable pregnant yoga teacher back in 2014 on Instagram (@ameliakyoga)- I was fascinated by her full belly in all these awesome yoga poses and aspired to be flexible like her when I would be pregnant one day. But to my shock this active yogi gave birth July 2014 and her son, Landon, only lived 4 days on this earth- totally unexplainable, an absolute devastating mystery. Fast forward, to 2015, she found out she was pregnant with her rainbow baby, Lily. And then she realized at 37 weeks that she was having similar symptoms (like itchiness on bottom of feet and palms, right upper-quadrant pain, and dark urine) to when she was pregnant with Landon. She researched more and confirmed her suspicions of ICP. She followed her gut and urged the doctors to deliver her baby- she convinced them and now she has a healthy little miracle and an explanation to what happened to her perfect little boy…I-C-P.

After reading her story in December, a little flag went up as I had experienced faint itchiness in my feet and hands in the first trimester. Then it persisted intermittenly for weeks to come. So finally, I spoke up and asked my OBGYN to order a total-fractionated bile acid (TBA) blood test along with the liver function (LFT) and other tests she was ordering. She said she had never ordered the TBA test before but there was no harm in ordering it so she wrote me a script. The TBA took a couple weeks to get back but in the meantime my AST (53) and ALT (59) liver enzymes and Lipase (78) came back elevated so she sent me for a gallbladder/liver ultrasound.

The ultrasound came back normal so that removed a lot of fear of other disorders and I met with the doctor this past Monday and she wasn’t concerned as blood tests can be all over the place during pregnancy. We hadn’t gotten the TBA results yet but she wasn’t concerned so I just brushed it off. Then Tuesday, I finished with my clients and received a voicemail from her at 7:30pm (never a good sign) saying that I was right in my suspicions of the TBA and my levels were elevated (26.4). I called her cell phone back and she admitted that she didn’t have much experience with ICP in her 25+ years as an OBGYN. I texted her a practitioners pamphlet from ICPcare.org with a lot of the latest research and best practices. A lot of doctors don’t have experience with ICP as it is so rare (1:1,000). It is so important to educate yourself and others, and follow your gut!

I will be put on ursodiol, hopefully by the end of the day. And I will be meeting with a Maternal and Fetal Medicine doctor hopefully beginning next week to make a plan of action as consistent blood tests, NSTs and BPPs are recommended. Also, I will most like be birthing Little Bean between 36-37 weeks. This definitely has been one crazy and unexpected journey to parenthood and it isn’t over yet! We know our Lord is Sovereign- he “happened” to lead me to Amelia’s page two years ago knowing she would be my only resource of knowledge of ICP; there’s a reason and a bigger purpose. Allan prays and reads Psalm 91 over us. Our baby girl will be okay, she is (and I am) in His almighty hands.

Please join me in praying:

1. Little Bean will remain unaffected (she’s been reassuring me with lots of movement this week- thankfully).

2. She will initiate birth on her own so we won’t have to go through induction or medical intervention.

3. That someone’s life will be saved through this awareness.

4. Doctor’s wisdom for the best care for us girls.

Please make others aware, visit ICPcare.org- you never know how many lives you can save… And please if you have any questions, don’t hesitate to ask!