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:
- 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.”
- 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!
- 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!
- 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
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A double reminder of God’s promises outside my hospital window.
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Platelets (aka lemonade) going in…so thankful to the donor that supplied them!
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My sister giving me the live-saving gift of blood.
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Got water-boarded by that ventilator more times than I care to recall in the ICU…
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Little Bean is growing!! Mommy got to walk for the first time in a week!
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When your hair starts falling out in dreads, it’s okay to treat yourself to coldstone…
Confessions of the Reproductively Challenged 