My Breast Cancer Journey Part 43: My Twin Sister’s Baby Boy, Bobbie Formula Sponsorship, IVF & 18 Month Remission Appointment!

This blog post is the 43rd in a series about my (and twin sister’s) breast cancer journey that began when we were 30 years old in July 2019. In 2019, I also started documenting our younger sister’s breast cancer previvorship journey. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on FacebookTwitter, and Instagram.

Here is my twin sister Steph (middle, thumbs up!), her husband Paul, and me after her 18 month remission appointment and “all clear!”

We are beyond excited to announce my twin sister is cancer free as she marches on into remission! Not only that, but Stephanie is pregnant with she and Paul’s baby boy, Harold Robert! She is 28 weeks along, and she and her husband Paul are elated to welcome Baby Harry into the world on Valentine’s Day 2023!

All of the details about her “timed break” from Tamoxifen and conception via in vitro fertilization are in this post. Before jumping into the details, here are the highlights of praises and specific prayer requests!:

Here is Baby Harry smiling for the camera at his 28 week ultrasound!

Praises that Baby Harry’s umbilical cord moved up & away from Steph’s cervix: Steph has a velamentous cord insertion, which occurs in 1% of pregnancies (shocker for Steph who has ended up with rare medical situations all along!!). To take it one step further, her velamentous cord started out as “vasa previa,” which means that unprotected blood vessels from her umbilical cord traveled across the opening of her cervix, posing dangers. If Steph’s water broke during labor with vasa previa, the exposed blood vessels can burst, causing serious problems for mama and baby especially if her water broke early. Given all these high risk complications, we prayed and prayed and prayed that Baby Harry’s umbilical cord would move up ASAP, away from her cervix, so that Steph wouldn’t have to go into the hospital 2 months early to be monitored and that she would have the option to deliver naturally at term instead of having a planned c-section as early as 36 weeks. While Steph still has a velamentous cord, we found out this morning that her vasa previa has resolved and her umbilical cord has moved out of the “danger zone” and is far enough away from Steph’s cervix for her to avoid an early admittance to the hospital! God has perfect timing and plans for Baby Harry and we are so thankful for His protection and provision in Harry’s little life so far! 🙂

Praise!: Steph applied for and received a year of sponsored formula from Bobbie, an incredible organic women-led formula company that sponsors ~60 breast cancer survivor mamas with a year of free formula every year! Bobbie partners with The Breasties to advocate for insurance equality–to get breast cancer survivor mamas insurance coverage for formula in a similar way to how other mamas have insurance coverage for breast pumps. Steph is going to be part of their advocacy movement and has already shared her story with the amazing women who also received the sponsorship and with journalist Katie Couric, who was on the Zoom call telling everyone they’d won a sponsorship! You can see Steph with some of her fellow Bobbie Breasties in the photo above!

Praise!: We got to throw a dinosaur-themed baby shower for Baby Harry, Steph, and Paul last weekend. It was so fun to share time with Steph and Paul and to celebrate their amazing baby! Photos below 🙂

A recap of Steph’s journey to date: Fertility preservation, OHSS, and a hysteroscopy

It has certainly been a long journey to get where we are today! Here is a brief “highlight reel” of what (in addition to lots of prayers and Jesus) got Steph and Baby Harry where she is today:

Fertility preservation: Before my twin sister started chemotherapy, her oncologist recommended they preserve fertility at a fertility clinic in the Twin Cities. They were able to freeze / preserve pre-chemo 28 eggs, which was wonderful! You can read all about this in this blog post.

Ovarian hyperstimulation syndrome (OHSS): Unfortunately, because Steph’s trigger shot and procedure to retrieve 28 eggs was so “successful,” her body went into ovarian hyperstimulation syndrome as a result of all of the hormones given in her trigger shot. This happens in a very small percentage of women who go through fertility preservation, and Steph found herself in the emergency room. She had to have two thoracenteses and a paracentesis to drain fluid from her abdomen and lung cavity. To be honest, we are just thankful she survived all of that–just one week before starting chemotherapy. You can read about Steph’s experience with OHSS in this blog post.

Steph’s hysteroscopy (removal of scar tissue) procedure at Mayo Clinic: Steph’s fertility clinic in the Twin Cities found some scar tissue in her uterus on imaging that they said was likely a result of chemotherapy. They recommend she have it removed before beginning the IVF process to ensure the embryo implant would be successful. Her timeline was very tight, but Mayo Clinic’s gynecological surgery team got her in within a week! Not only that, but Steph got to see a doctor who had been doing these procedures for decades. Her procedure was successful as an outpatient procedure and Paul was even able to stay with her for the entire thing!

After these brief recaps, we are all set to head into Baby Harry’s conception story!

Here are Steph and Paul waiting to see her oncologist for her 18 month remission checkup!

Taking a “timed break” from Tamoxifen

Steph and her husband Paul met with her oncologist toward the end of 2021 to discuss expanding their family. Their oncologist said that, based on the data available to him about cancer survivors like Steph taking timed breaks from Tamoxifen, that he was completely comfortable with Steph taking a 2-year-maximum timed break from Tamoxifen to try to conceive via IVF. He also let Steph know that she’d need to be off of Tamoxifen for 3 months minimum before trying to conceive to ensure it’s out of her system. This is because Tamoxifen is proven to cause birth defects and pregnancy to end early. Tamoxifen also has a long half life–at 3 months it is 99% is out of your system, and two weeks before that it is 85% out of your system. So, it’s important to wait the extra couple weeks to a full 3 months before trying to conceive. 

Based on this guidance, Steph began her timed break from Tamoxifen on January 1, 2022, and she and Paul planned to head to the fertility clinic to begin IVF in April 2022, with the approval and input of her oncologist! Here is what that process looked like.

Surrogacy?

Steph’s IVF doctor mentioned that some breast cancer survivors opt immediately for surrogacy rather than carrying their own baby due to fear of higher estrogen levels in pregnancy and risk of recurrence, so Steph asked her oncologist if she and Paul should opt for surrogacy right away.   

Steph also personally wanted to know if pregnancy would increase her risk of cancer recurrence, so she asked her oncologist that too.

Her oncologist reassured her that he had reviewed studies and data that pertained to her case and his answer was no on both counts: All of the data her oncologist has shows no increase of recurrence with pregnancy for women like Steph that get pregnant after breast cancer. So, in Steph’s case, pregnancy does not increase breast cancer recurrence risk! With that said, Steph and Paul were free to decide natural conception vs. in vitro fertilization (IVF)!

Chester’s in Rochester is our jam. We love their burgers and salads and it gives us the fuel we need to keep going through all of these appointments!!

Natural conception vs. in vitro fertilization

Steph let her oncologist know first that her AMH level was at 4.4, which is considered “normal!” This is a miracle in and of itself, because it means that Steph has eggs left in her ovarian reserves post-chemo! She asked her oncologist if, based on this knowledge, if he would recommend she and Paul attempt to conceive naturally during her timed break from Tamoxifen.

Steph’s oncologist let her and Paul know that he would be entirely supportive of them attempting pregnancy naturally, or to go the IVF route. If they were going to try to conceive naturally, Steph’s oncologist was entirely supportive, but if they wanted to get pregnant in the quickest way possible within the 2 year Tamoxifen timed break window, an embryo transfer via IVF would make the most sense.

They had 28 eggs saved, which was excellent!, but Steph had some questions about the progesterone and estrogen they’d need to get her cycle going for IVF to be successful. Her oncologist, again, was not concerned with anything they want to use in the IVF process. Her oncologist let us know that he had no concerns because the levels of hormones going through Steph’s body during pregnancy would be much higher than any supplements or hormones the fertility clinic would give her.

Steph and Paul also asked if there would be any number of rounds of IVF that would make her oncologist uncomfortable. He said no, but that the 2-year-timed break is very important: Research shows that, as a general guideline, any timed break from endocrine treatment (Tamoxifen) should be less than 2 years.

So off they went into the IVF process!

Here are Steph and Paul all dressed for the embryo transfer!

IVF Step 1: Baby Harry’s origin story

As mentioned earlier, Steph and Paul were able to freeze / preserve pre-chemo 28 eggs, which was wonderful! You can read all about this in this blog post.

Steph and Paul’s fertility doctor let them know that they unfreeze eggs in batches of 3, and that they’d recommend attempting to thaw 6. Five eggs survived the thaw, and all 5 were fertilized, and they ended up with a 100% fertilization rate!, but only 3 made it to blastocyst phase.

Steph and Paul decided, with their doctor, to attempt to transfer twins (2 of the 3 embryos), and to freeze the third embryo to come back for later. The double embryo transfer was successful, but only one of the embryos implanted in Steph’s uterus. The other embryo was “reabsorbed” and did not become a viable pregnancy.

This is similar to what is called a “chemical pregnancy,” which occurs in 1 of 4 conception stories. A woman conceives, but the pregnancy never implants in the uterus or stops developing in the first 5-6 weeks and is then passed in a monthly period (also known as “early pregnancy loss”). Most women sometimes never know that this type of pregnancy happens to them, but some do–if they get a positive pregnancy test early on but then get a period.

All that to say, Baby Harry was confirmed in an ultrasound a couple of weeks after his conception. While we mourn the second embryo who was transferred and didn’t implant, we celebrate Harry’s life and the fact that Paul and Steph have a third embryo in the freezer at their fertility clinic that they plan to transfer in the next several years after Harry’s arrival!

Here are Steph and Paul at their “confirmation of pregnancy” appointment, waving hello to Baby Harry on the ultrasound screen!
Here I am, with my medical support team of sister Jenn, Mama Jane, niece Madden, and Steph–all ready to give one of her daily progesterone butt shots while Paul was away!

IVF Step 2: Daily shots of progesterone

Every day, Steph got targets drawn on her butt where she needed a shot of progesterone to keep her hormones up through the first few weeks of her pregnancy. We affectionately called these “butt shots!” When her husband Paul was out of town, I would help out, with my sister and mom. Our niece Madden tagged along, too!

IVF Step 3: Subchorionic hematoma

Steph experienced some bleeding after her confirmation of pregnancy appointment, which ended up being a “subchorionic hematoma.” These are fairly common in IVF babies for some reason, but is terrifying no matter what. Steph was worried she may be miscarrying, but her fertility doctor reassured her to rest and the bleeding would stop shortly. Sure enough, it did. Thank God!

Here I am with Steph and Paul at their confirmation of pregnancy appointment in my “best aunt ever” tshirt!!!

IVF Step 4: Graduating from the fertility clinic to the OB

Steph graduated from the IVF clinic to her standard practice OB at her confirmation of pregnancy appointment. She is excited to be working with the same OB that delivered my baby, Zephaniah, in 2021, and our niece, Madden, in 2022!

Here is Steph 23 weeks pregnant at her oncology appointment at Mayo this fall!

28 weeks pregnant and counting!

Steph is 28 weeks pregnant and counting! There are a few exciting things happening in her uterus: Steph has a velamentous cord, which means Harry’s umbilical cord is unsheathed, inserts into the side of the placenta, and comprises some exposed blood vessels. In the beginning, Steph had “vasa previa,” which means her umbilical cord was very close to Steph’s cervix, which meant if her water broke early, Steph would bleed a lot and baby’s life would be in danger. if the umbilical cord hadn’t moved up to 5 cm away from the cervix by Steph’s 28 week OB appointment, she would have had to potentially go into bed rest at the hospital and have a planned c-section as early as 36 weeks to be watched closely!

We prayed and prayed and prayed that Baby Harry’s umbilical cord would move up ASAP, away from the cervix, so that Steph wouldn’t have to go into the hospital 2 months early to be monitored and that she would have the option to deliver naturally at term instead of having an early planned c-section as early as 36 weeks!

We found out this morning at Steph’s 28 week appointment that her cord has moved out of the “danger zone” and is far enough away from Steph’s cervix for her to avoid an early admittance to the hospital!! She is smiling in the photo above 🙂 God has perfect timing and plans for Baby Harry and we are so thankful for His protection and provision in Harry’s little life so far! 🙂

Here we are at Steph’s 28 week OB appointment waiting for the doctor!!
Here I am as a proud auntie with nephew Baby Harry’s ultrasound pic!

Next steps: Multiple pregnancies & intermittent timed breaks on and off Tamoxifen

We asked Steph’s oncologist about risk of recurrence for multiple pregnancies–i.e., if there is no increased chance of recurrence with one pregnancy, is that the same case for multiple pregnancies? Steph’s oncologist said there is no distinguishing between one or multiple pregnancies in the studies that show pregnancy does not increase chance of recurrence, and that he is “very supportive” of multiple pregnancies.

So, after Baby Harry’s delivery, Steph will go back on Tamoxifen to complete her endocrine therapy regimen, but will potentially take another timed break to try to conceive a second baby via IVF! At her most recent visit with her oncologist, we asked for an update on how long Steph would need to be on Tamoxifen. Her oncologist let us know that the recommended length for survivors to stay on Tamoxifen is between 5-10 years total. He also let Steph know that we could discuss any potential benefits of staying on it longer than 5 years closer to that date because hopefully we’ll have more data at that point!

In addition to that total timeline, her oncologist let her know that it is totally possible for Steph to attempt another timed break and embryo transfer before the 5 to 10 total years on Tamoxifen ends / is up, which means they can attempt another embryo transfer in the year or two after Harry’s arrival! He said that “intermittent Tamoxifen” is totally fine.

Here is Auntie Steph (pregnant with Harry!) with Niece Madden Jane and nephew Zephaniah Jon!

Next steps at Mayo

Steph will see her oncologist again in May 2023, which is approximately 6 months away. She will restart Tamoxifen at that point if she’s recovering well from Harry’s delivery as there is “no clinical benefit to restarting earlier rather than later within that 2 year window.” The oncologist also said if you’re willing to start the Tamoxifen earlier to be done sooner, that that’s totally fine.

Also in 2023, because federal recommendations moved from 5 year to 3 year checkups on silicone implants, Steph will likely have an MRI to check on the integrity of her silicone implants.

In the meantime, she will be enjoying carrying Baby Harry and being auntie to nephew Zephaniah Jon and niece Madden Jane! Oh, and of course, enjoying being a “fur mama” to her Boston Terrier puppies Gizmo and Sonic (on Instagram as @gizmo_n_sonic)!

Thank you for your prayers for Steph, Paul, and Baby Harry! Specific continued prayers include:

  • Prayers for the velamentous cord insertion: That Baby Harry would continue growing and thriving and that the pregnancy would be safe and complete to term!
  • Prayers for remission: Continued prayers (as always :)) that Steph (and our whole family for that matter!) would be protected and delivered from cancer forever!

Psalm 139 has been on my heart for Steph, Paul, and Harry this year. There are musical versions of this psalm by Shane & Shane and Red Rocks Worship, too. The verses go like this:

“O LORD, you have searched me and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways. Before a word is on my tongue you know it completely, O LORD.

You hem me in–behind and before; you have laid your hand upon me. Such knowledge is too wonderful for me, too lofty for me to attain.

Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast. If I say, “Surely the darkness will hide me and the light become night around me,” even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you.

For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

How precious to me are your thoughts, O God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand. When I awake, I am still with you.”

Let’s not forget Steph and Paul’s baby Boston Terriers, Gizmo (right) and Sonic (left)!

This blog post is the 43rd in a series about my (and twin sister’s) breast cancer journey that began when we were 30 years old in July 2019. In 2019, I also started documenting our younger sister’s breast cancer previvorship journey. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link. You can also follow on FacebookTwitter, and Instagram.

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