Support Harlow Jane's Fight Against Brain Tumor

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Thursday 4/24/25

We’re here in Milwaukee! We’ve talked with Harlow every day about her appointment. She asked how many pokes she’ll get so I talked with the MRI Wing and she’ll only get one. She said “only one?!” She was very happy to hear only one poke! She doesn’t seem scared or anxious, praise God for that. She is so brave and we have so much confidence in her! We’ve been giving her choices too, like how does she want to go into the hospital? Walking, stroller ride, or wagon ride. She picked wagon ride. And who does she want to pull her? Daddy! Trying to make this a positive experience for her as much as we can.

Harlow couldn’t wait to show Porter all the fun stuff the Ronald House has to offer! He’s been loving it. He played with virtual reality goggles and had a blast!

Tomorrow we have to be to the MRI Wing by 9:30am CST. Please stand in prayer over all of us tomorrow! Specifically pray for:

1. No tumor! No nothing!!

2. Clear healthy brain!

3. No follow up medicines or procedures

4. No more restrictions

5. Peace for Jake and I

6. Joy!

“I will give thanks to you, Lord, with all my heart; I will tell of all your wonderful deeds. I will be glad and rejoice in you; I will sing the praises of your name, O Most High.”

‭‭Psalms‬ ‭9‬:‭1-2‬ ‭

Monday 4/21/25 update:

Hello everyone! I know it’s been a while since I updated on here. Harlow is doing well, we have our good days and bad days, and her scar has healed up! We have our big scan on Friday, April 25. This appointment is the one we’ve been waiting for. She’ll have her 2 hour sedated MRI with and without contrast followed by a sit down meeting with her oncologist and neurosurgeon team. This scan will tell us if any of the tumor is still present and what the next steps are from here. We have total faith NONE of the tumor was left behind! We are asking that you all stand in prayer with us this week, and especially on Friday. We’re heading down to Milwaukee on Thursday, all of us as a family, and staying at the amazing Ronald McDonald House. We’ll be there until Saturday. We’re so happy the hospital restrictions are done now and that Porter can be with us this time. We don’t ever wanna leave him behind again. We will be talking with Harlow all week and preparing her for Friday. Please pray for her. I’ll update more this week. Thank you all!

Happy 7th Birthday, Porter!! We love you so much!

God Bless ❤️

On January 23, 2025, Jake and Justina Hass (Cherry) got news no parent wants to hear. After taking their 4-year-old daughter, Harlow Jane, to the eye doctor for recent headaches and balance changes, they were immediately referred and sent to Milwaukee Children's hospital where an urgent MRI revealed she had a large brain tumor. That evening, an external ventricular drain was placed to reduce swelling caused by the tumor compressing her brain. She was admitted to the Pediatric Intensive Care Unit for monitoring and stabilization over the weekend before an all day surgery on Tuesday, January 28th to attempt to remove the tumor. Based on the scans, the pediatric neurologist suspects that the tumor is a pediatric pilocytic astrocytoma. There were no signs of any tumor activity elsewhere in her body. The last 48 hours have been shocking and exhausting for the Hass and Cherry families. Fortunately, the family was able to get a room at the Ronald McDonald House in Milwaukee, WI so they can be close by to support and care for Harlow during this time.

With their entire world shifting, the Hass family is in need of prayers and financial support. Jake and Justina will both lose income for an unknown amount of time as they take time from work to be with their daughter. Different family members will be traveling back and forth from Milwaukee to Marinette and Minnesota to take care of pets, bring the Hass family supplies, and transport siblings Porter (6 years) and Pearl (9 months) to see their sister and parents. Besides the cost of uprooting a family's life and routine is the cost of medical expenses. This diagnosis comes with the need for multiple tests, scans, an ICU stay, surgery, operative and recovery costs, rehabilitation and different therapies, an unknown hospital admission time, and more. As the costs build up, the family humbly accepts and thanks everyone for any donation made to support Harlow's care and ease the family's stress during this time. If you are unable to make a monetary donation, we ask that you say a prayer for our feisty little fighter as she goes through this journey.

If anyone would like to donate to the family’s immediate needs of food, water, supplies, extra clothes and toiletries, etc. as they settle into the Ronald McDonald House please venmo Justina (Harlow’s mom) @Justina-Hass 

Saturday Update from Auntie Tabby:

Hurry up and WAIT as the old saying goes.

Harlow had a great day! Her MeeMaw and PaPa brought baby Pearly to stay until discharge. Harlow Janie was so happy to have her baby with her. They will not let Porter in the hospital during flu season because he is under 12yrs old. He is at his cousin’s house having a blast.

Harlow is getting cabin fever and that is to be expected. So at her feistiest point today we went on a family walk. She was so excited to show Pearl the play area. A lady told her “Oh I love your shoes they glow up, I should get a pair” Harlow responded back “thank you but they won’t fit you” we all laughed and said “there she is”. We were able to get some nutrition in her today but nothing tastes as it should to her at this time. I expected that could happen. She’s still getting her nunnie milk from momma so thank God for that! Breast milk heals!

Her drain can only be clamped for about 10min. After that she has to go back to bed and rest. The fluid coming off the drain is CLEAR! Clear fluid is what we want! Praise God! Her ICP (intracranial pressures) are normal. On admission they were 40. For children a normal ICP range is 8-15. She went to bed easy and has been sleeping through the night!

Our family is so incredibly thankful for every single person who has reached out and who has donated! Our minds are blown. We’re trying to comment back and acknowledge you all, so thank you in advance for your patience.

God has shown us an entire list of blessings and positives about this entire situation! One of them is that we get to be together. We had favor with our employers and we traveled safe and were able to support each other! We need each other to keep each person positive and strong!

Tabby (me) feels really really positive for a great outcome clinically.

Until tomorrow, good night everyone!

❤️ Auntie Tabby

Sunday Night Update by Auntie Tabby:

This will be a shorter one. Harlow (Big Sissy)

had an awesome day! She woke up and requested watermelon! She ate the entire container. She had a big appetite today and all her food craving requests were granted!

She went on a walk where she wanted to be her goofy self and play Simon Says and show her baby sissy the interactive play wall where they had different animals and objects from a projector. Sissy was her fun regular goofy self.

MeeMaw made an awesome beef stew and Jake made a beautiful salad and we all ate dinner together in the hospital room.

Baby Sissy spent most of the day at the Ronald house where she played in the play room and met Cooper the dog during pet therapy. She has decided tonight that she is never going to bed. So pray for us!

Our family is literally moved to tears by all the people reaching out to us and praying and donating! THANK YOU SO MUCH!

Tomorrow will be pre surgery prep and assessments. Could be a busy day of different people she has never met coming and going from the room. She needs extra prayer to be able to navigate that. But something exciting that is a surprise for her is that Grandpa and Grandma Hass will come.

Good night everyone, until tomorrow!

❤️Auntie Tabby

Monday Night Update from Auntie Tabby.

Today was a good day! Harlow had to get her blood drawn today! She was strong and brave and she was so glad when it was over! She went on a few walks even in protest! She is asking to go home and we don’t blame her! She misses all her friends at preschool. She misses her big brother Porter the most! It is so hard for all of us to be separated from him! But the hospital will not let him in unless it is a critical emergency. Breaks our hearts. Every day she shows us how incredible she is.

Her daddy bought her 2 purses at the gift shop and she was so excited. She wore one around her neck and insisted on sleeping with it! So so sweet!

Her Grandma and Grandpa Hass came to visit with a load of supplies that were much needed! So thankful to have more family come and support us during this treacherous time.

Jakes union at work is throwing a pancake benefit on Harlow’s behalf and we are just so blown away by all the love and support we are receiving for our special girl! Shes the light of our family.

Tomorrow is surgery day! We are ready and we remain faithful through our relationship with Jesus! He has our girl in the palm of his hand and we trust him!

GoFund me and Venmo donors ya”ll continue to bring is to tears! ❤️ Thank you so much! We see you! Your blessings are coming back to you 10 fold!

Please pray for our Dr. her name is Dr.Elsa! Pray she gets plenty of sleep and wakes up refreshed feeling well and ready to do a phenomenal surgery!

Good night! Tomorrow I will do multiple updates live as we are updated!

❤️ Auntie Tabby

labs info: Her labs have been stable this whole time. Her CSF (cerebral spinal fluid) when they tested it the night they put the drain in only showed some red blood cells. Red blood cells don’t surprise me cuz they could have got in the test tube from the procedure itself! Everything else they tested the CSF for was negative including the big C. So this is all positive! After initial drain placement and the red blood cells flushed out her fluid has remained clear! Thank you Jesus!

Tuesday Surgery Day Updates from Auntie Tabby:

Mom Pearl and I arrived at 6;15am big sissy was awake we kissed her told her how much we love her then she fell back asleep. We met with the nurse practitioner, signed consent forms asked more questions and now we wait for the team to come get her and for Dr. Elsa to come talk to us.

Ok our prayer warrior friends! Today is surgery! Here are specifics!

1. No complications

2. Easy removal of tumor

3. No bleeding no blood transfusions

4. No swelling so she can be extubated in OR

5. Take her fear away and everyone else fear!

Philippians 4:7

7:58 AM Sissy is in OR for pre surgery lines and airway. Surgery should start in 2 hours.

Mama Janice who came to transport us prayed over our Harlow and gave us comfort.

9:33 AM Surgery has begun and it should take 6 hours! All the prayers please!

11:40AM update from OR via text system.

Dr. Elsa and her team are continuing to work. They are working their way to the mass. Harlow is doing great. Thanks, Nicole OR RN

1:55 PM text from OR. Harlow is doing great under anesthesia. Dr. Elsa and her team are still working away. Thanks, Nicole OR RN

4:29 PM text from OR: Hi, this is Meaghan, I am an operating nurse that is relieving Nicole. Sorry for not getting an update out sooner. Everything is going well. Dr. Elsa and her team are still working. Harlow is safe, warm, and comfortable. Thank you, Meaghan RN

*surgery like this takes patience, precision, meticulous detail. Shes going nice and slow. I anticipate another 3-4 hours- Auntie Tabby*

5:36PM text from OR:

Harlow is doing well. Dr. Elsa continues to work on removing the mass.

“we hurry up and wait”

6:50 Update text from OR:

Harlow is doing well. We are beginning to close which will take about another hour.

8:06 PM Text from OR:

We are still working and finalizing some of the last steps. Everything is going well. Thank you, OR Nurse

❤️❤️❤️

8:55 PM Post Op Update: I will write a bigger one later! Sissy had a successful “visually total extraction of the tumor” she left a small layer of the cyst which is ok and wont reproduce. MRI will tells us everything else we need to know in the morning! Big Sissy is stable! Were exhausted and can barely walk or talk so I”ll tell more of the story tomorrow! Miracles happened during that surgery!

11:13PM: Sissy looks absolutely phenomenal! She is extubated and breathing on her own. Her vitals are perfect! She is her regular feisty self! So feisty in fact she pulled out her Aline (In arm line that monitors blood pressure) and ripped her head dressing off. I mean God literally had our baby girl in the palm of his hand! Her sutures on her incision are absolutely gorgeous! They hardly had to cut any hair! You know how long shes been growing her hair. She always says. “i’m growing my hair so my daddy can braid it” awe Sissy! She is cuddling in bed with her mama. Please pray everyone sleeps! I am going to let Justina write the surgery miracles post because she talked with Dr. Elsa herself! Please pray Dr. Elsa has a good night sleep!

❤️ Auntie Tabby

Wednesday update from Auntie Tabby:

Today at noon Sissy will have her follow up MRI to confirm that Dr. Elsa did in fact take the entire tumor out. The tumor was “way bigger” than what the MRI initially showed. Dr. Elsa was kind of taken aback when she discovered this. That is also why the surgery took so much longer. sissy is complaining her body hurts. So justina is going to massage her with Arnica cream to help relieve the pain. She was prone for about 12hours so that makes complete sense that she is sore. We are so proud of our little girl! She is a warrior! After MRI we get our old room back on the floors. The nurses are so kind to us!

I am making tacos tonight. Sissy loves taco bowls so I hope she can eat it. I think shes over soups and broths.

this is Sissy best friend little Ruby. They are thick as thieves.

Auntie Tabby

Wednesday Night Update From Auntie Tabby:

Sissy rested a lot today. She went to her follow up MRI at noon and here are the results.

From Justina: MRI results showed that everything that was there before is now gone! There is still some swelling and sometimes swelling can make things look the same so they won't give the 100% stamp until three months from now when she gets another MRI when all the swelling has gone away. But we are fully confident that it was 100% extracted and Dr. Elsa was very pleased with this assessment. She told us we were very fortunate and very lucky because it was a bad week and there were a lot of people in our same situation that did not come out so lucky. But we know it wasn’t luck, it was Him. She is very happy with the results and very confident with moving forward with everything. Everything they thought it was from the beginning has stayed the same up to this point with no changes so that further validates that it is the benign pilocytic astrocytoma. ❤️❤️❤️

Oncologist Dr. came by to introduce himself. He said even though everything thus far has come back cancer free I still want to introduce myself. I wanted to let you know that the Pathologist working on your case is the best in the business. He is doing extra testing just to make sure there definitely is no cancer. How amazing is this everyone! We just keep getting blessed over and over again!

Auntie Nai (Justina’s best friend) came from Wausau. WI today to babysit Pearl until 1pm. That was such a big big blessing to us! Thank you so much!

She was discharged from ICU and moved back to her old room. Since she is going to be here awhile I put up a bunch of her pictures and family pictures. She has a favorite picture of herself I took summer 2023. She wanted me to tape it on her bed rail so she could look at it. Oh, my sweet sweet sissy. That picture is framed on her bedside at home as well.

Around 9 p.m. Sissy had a fever of 101.3. Tabby went to the hospital and we talked with the charge nurse. We know that a fever post op a big long surgery like that is normal. We initially requested a septic workup to be on the super safe side. Around 10:15 we checked her temp again and it was 99.3. So that is wonderful it came down on its own! The systems of her body are communicating to each other.

She was still given Tylenol to help her feel more comfortable. She is tucked in and resting.

In other news…The floor charge nurse told us to keep all our homemade food in the frig on her floor even though we were one night in icu. Jake went up at 1:30 am and ate before going to bed.

Today all of our food was thrown out in the garbage by cleaners by accident! They were told to throw everything away because joint commission was coming next week. All of our glass pyrex that were in the frig were trashed. Harlow’s 30$ fish oil. All our homemade organic meals. Im beyond words.

So I have to go back to Whole Foods tomorrow for more supplies. But we have faith the Lord will supply us with everything we need!

Thank you to every single donor! You’re helping my family so much! I’m beyond words!

We ask that you please join us in prayer for her recovery. Specifically pray that

1. she’ll eat no NG tube needed

2. be mobile

3. no signs of posterior fascia syndrome

4. her drain will continue to do its job and when it’s removed that her brain will take over naturally with no issues

5. a stint will not be needed

Good Night! ❤️ Auntie Tabby

Thursdsy AM Prayer Request:

1. Pain Management under control.

2. No fevers.

3. She passes her speech swallow test for eating solids.

4. She has an appetite.

This morning Sissy was such a big brave girl! She asked to go pody on the commode. She asked to sit up and watch cartoons. PT/OT came in and Sissy was standing next to the bed. Huge progress! Dr. Elsa came by and Harlow followed her directions to grab for a toy. At noon speech therapy came and Sissy ate some bites of watermelon. Which is wonderful! She is in a lot of pain still and that takes time. Sissy’s entire recovery is expected to take at least one full year.

*GFM page does not allow me to upload an entire picture it crops it.**

Some people reached out that they wanted to sent goodies to Harlow! We love that idea. Harlow loves receiving cards and gifts. Here is the address.

Ronald McDonald House Charities

Attn: Hass Family room 107

8948 Watertown Plank Rd

Milwaukee, WI 53226

Thursday Night Update by Auntie Tabby.

Sissy is had a great day. She is hitting small milestones that are making a big difference. She is going potty #1 and #2. She decided she wanted to count “1-2-3 pick me up” and she is also counting her steps to the commode. She’s been talking to us in sentences and we can see her beautiful personality coming back!! She had PT/OT today and did great! She reached for her slinky, picked it up, and stretched it really far! She ate a few more bites of food and ice chips. She has been falling asleep about 7pm every night. No fevers today. Tomorrow we’re going to try art therapy!

My sister’s breast milk supply vs demand is being challenged! She is taking lactation supplements to help build her supply back up. But time is not of the essence when both girls are needing the breast milk. I tried Baby Sissy on goat milk. She looked at me like I was nuts. I tried Serenity Kids milk, she will drink it but knows its not breast milk. She drinks about half the bottle before shes over it. Mom and I had an idea at the very same time! The Amish Mennonite Community! There is a big group of them staying at the Ronald house. When I was walking back to the hospital on the ramp I met Lucinda. I explained the situation and she took my sister’s number. Ruth called my sister and she is going to pump her fresh milk and give her some frozen milk from her stock! How absolutely amazing and blessed are we! God is showing us favor every which way! I have no words! Baby Pearl is going to be so happy!

I (Auntie Tabby) am leaving tomorrow before the sun rises. I have to go back to Minneapolis and go back to work. My mom’s best friend Cindy is coming to switch out with me and she will stay the entire weekend. That is such a sacrifice and we thank you Cindy for being available to us! Jake plans on leaving tomorrow evening to go take care of Porter and get the house in order for when Harlow is discharged. Anticipated about 7-10 more days with everything continuing to run smooth.

Good Night! ❤️ Auntie Tabby

Friday Night Update From Auntie Tabby:

Sissy is having a remarkable day! She woke up and ate an entire protein bar and a circle cheese! She is an absolute warrior. She is walking to and from the commode. She walked to an art table to color and look at her pictures taped to her door. Art therapy came today, but she was exhausted from PT/OT and not very interested. We will try again tomorrow. Her speech is great, the same as it was before! She’s talking in sentences and engaging in conversation. Praise God no signs of the posterior fascia syndrome. Today she told Justina “I just want nunnies and to watch TV.” We were so relieved to hear her say that because that is 100% Harlow Janie!!!

Dr. Elsa stopped by to see her and is happy with where she is right now. They were going to leave her drain at the level it is bc she’s not draining much so we’re hoping her brain is absorbing it by itself, which is good. They cleaned her incision in the back of her neck too for the first time, she will need to do that twice a day now. She orally took both her steroid and her vitamin c without complaint too!

She is eating more and more every day. Today she had some soup, some hotdog, a little bit of popcorn, juice, and fruit. Justina was not feeling good in the middle of the night last night and again this morning so she left Harlow when she woke up because she was worried of getting her sick. She went to the walk-in clinic and her Covid, flu, and RSV tests were all negative so that was a relief. Harlow had missed her so much while she was gone and was very emotional to see her mama again. Daddy was with her the whole time and got to spend daddy daughter time with her. We got some big smiles and laughs out of Harlow today too! She was watching videos of herself and laughing and smiling during it.

Baby Sissy, Meemaw, and Cindy went for a visit. Harlow was so happy to see baby sissy. She loves her baby so much.

Jake went back home now to be with their son Porter. It was hard for him to leave Harlow, but they miss Porter so much they can barely stand it.

At bed time potty she lifted each leg, one at a time, to get her pull-up on and stood for a while, so that’s another great sign.

We are all tucked in to bed now for the night. Please pray for a great night sleep for all of us.

Meemaw opened the frig at the Ronald house and Ruth had put many bottles of breast milk in there for Pearl. Pearl loves the milk so much more than the formula supplement we had been giving her. Justina does ask for a prayer request, and that is for Ruth and her baby son Brandon. Brandon is at children’s and Ruth and her family are staying at the Ronald McDonald house too. Ruth has graciously donated some of her breastmilk to Pearl and this is just one more miracle and blessing to add to our list that our Heavenly Father has bestowed upon our family. So now we ask that you stand in prayer with us and pray for absolute and complete healing for Brandon and health and safety for him and his entire family. Amen.

Good Night Auntie Tabby

Saturday Night Update from Justina:

Today was another great day for Harlow. She woke up and for breakfast had a quarter of a banana and then a little while later she ate an entire cucumber, an entire circle cheese and some strawberries. She ate food throughout the day and her portions are getting larger. We did some more PT/OT today and she walked all the way to her door and poked her head out and we also went for a wagon ride this afternoon. She was not too happy about it, but I explained to her that we needed to get out of that room.

The neurosurgeon on this weekend came in and introduced himself, Dr. Lew, and he seemed pleased with her progress as well. I was told by the nursing staff he’s a brilliant man and that he trained Doctor Elsa. I asked him about the continuous use of Tylenol and ibuprofen for her pain management, and whether or not that was interfering with us truly knowing if she was developing any fevers or masking anything else. At our house, I do not typically give Tylenol or ibuprofen for fevers, I let the body do its thing and work through whatever it’s going through. So I was concerned that giving Tylenol and ibuprofen for days in a row like this would not allow us to see if there was any true fevers or infections going on. He explained that the Tylenol and ibuprofen are not necessarily for any fever, but more for pain management of her body and her head. And they have found that this regimen is the best to go with because then the children do not need to be on any opioids. Opioids can cause children to become more irritable and uncomfortable whereas the Tylenol and ibuprofen is better all around and helps them stay more stable with feeling comfortable and managing pain. Her vital signs and her drain fluid also tell us that she’s in good health and does not appear to be having any fevers or infection. I was comfortable with his explanation.

For OT/PT today I had her walk farther to get to the commode, stand up longer, sit at the end of her bed to squeeze some play doh and color. She wasn’t too thrilled and was tired, but she did her best and that’s all we can ask of our girl. I had her lift her arms and hug me and I just held her and smelled her and felt nothing but gratitude for the Lord having his hand on her.

We watched our favorite show Bluey and cuddled a lot. She wanted to know about volcanos and how they erupted so I told her it was because of pressure and we watched a video about it. Today however she did a lot more crying to go home. She’s sad to be here, she misses our home. In the bluey episode where they’re selling the house, she cried at the end and said “I don’t want to sell our house, I don’t want to leave”. It broke my heart. I told her we aren’t selling our house and we’ll be back there soon, all warm and cozy with a fire in the fireplace, our favorite thing. We’ll be there with daddy and brother and baby sissy, and we will get Cedar and Maple back soon too. That’s one of the hardest things in all of this, the desire to be home where she feels safe and loved. Pray for her about that.

Jake is back home with Porter now and that makes my heart happy. Porter was so excited and happy to see his dad and they spent some much needed quality time together. I can’t wait to see my son. Pearly has been doing great with Auntie Cindy! She’s nuts about her! I miss her so much too and wish she could be here all day at the hospital with me and Harlow. I’m so grateful she’s just a short walk away at the Ronald House.

Harlow has been getting more gifts from family and friends and we just want to say thank you so much and they bring joy to all of our faces, and tears.

Harlow is all tucked in bed for the night now, listening to worship music. We love Elevation Worship. I’m going to spend some time with Him and read the Bible before bed. Thank you all, for all the donations and prayers. God Bless.

Tonight’s Prayer Request: I met another mom today. Her name is Sara and her 22 month old son, Liam, is here for a brain tumor as well. I would ask that we keep them in our prayers tonight. John 14:14 says “If you ask me anything in my name, I will do it.” So I ask in the name of Jesus for miraculous healing and favor over Liam and his family like the Lord has shown our family. In Jesus name, Amen

Sunday Night Update from Justina:

Harlow Janie had a very good day! It started off with her waking up and talking my ear off! She wanted to know about birds and if they could talk, so we looked up videos about talking birds, and then she wanted to know about other birds so then we watched videos about all the birds of the world and talked about those birds. During the “Rain” episode of Bluey she laughed and smiled a lot, asked questions about why Bluey was trying to block off the rain, and at the end when the rainbow showed up, I asked her what that meant, and she replied “God‘s promise to never flood the Earth again.” That’s my girl! Back to her same old self!

We went on 5 walks/wagon rides today! I had her walk to the nurses station and touch it before getting into the wagon, and eventually she was walking past the nurses station! She was very grumpy about it, but I kept encouraging her and reminding her this is how we will get home. Her and Baby Sissy sat together in the wagon and we strolled around the unit and Harlow was really happy to share that with Pearl. I tried taking pictures and video, but to be honest Harlow doesn’t really like that. She asked me if I would not take any more pictures of her on her wagon rides and so I’m respecting her wishes on that.

She ate a bunch more food today too, including 4 beef sticks and 3 peanut butter cups, (all organic of course) but ended up with an upset tummy so we took a break from eating after that.

She only has 1 IV left now! We removed the one in her right arm so her dominant side is completely free! She was scared to take it out, scared it would hurt, but I encouraged her and told her it would feel better. It was causing her a lot of discomfort and I wanted it out, for her sake. She has full movement now again and I’m so glad for her. We have one IV remaining and it’s only to be used as needed.

She is orally taking her medications and fluids. That is very positive, but she’s struggling with keeping down the omeprazole (it’s to be used in conjunction with her steroid to help coat and protect her stomach). She’s thrown up twice now after taking it. We tried the capsule form and that did not go over well at all. I put in a request with the doctor to go back to IV form for her, but in the meantime, I researched alternatives to omeprazole and watermelon juice and aloe vera juice came up. I’m hoping we can get her to drink that instead.

Dr. Lew came in and he called Harlow’s tumor a “good tumor”. Unlikely to spread, unlikely to come back, unlikely to cause problems. Justina thanked him for that positive feedback!!!! ❤️❤️ Everyone says around here that Dr. Lew is brilliant and that he trained Dr. Elsa. The resident came by as well and assured Justina that Harlow is doing so fantastic. Helped calm her mama heart. Justina also asked Dr. Lew about a discharge date. He said that at this point it’s all dependent on her drain. On Monday he will discuss with Dr. Elsa and they will most likely raise her drain to put more demand on her own body to drain the fluid on its own. If all goes well and her body and brain take over then in a few days, they will transition to remove the drain completely. If her body and brain continue to work properly then it could be as soon as the end of the week that they could go home. Please pray over this specifically for us!

The pancake benefit in Escanaba today was a big success for the family! Thank you so much for everyone who participated! It means so much to our family!

Jake and Porter had a busy day today too! They got up early and went to the pancake benefit, then hit up church, then Porter had a basketball game. He scored his very first basket! Go Porty Go! I wish I could have been there to see it! I would have gone bonkers in the stands!

Jake is overnight shipping 22 bags of breast milk for baby sissy tomorrow! What a relief we had a decent stash at home for her. Pearl is staying the night at the hospital with me and Harlow. She spent all day here with me and it brought joy to Harlow and I having her here. I hate being away from her. I nursed both my daughters together for nap time and it brought me so much comfort. Now both girls are all cozy in their beds sleeping peacefully.

Hearing Harlow asking to go home is so heartbreaking but we just keep encouraging her that she will go home soon. Please continue to pray for her in this.

Love you all, thank you all, God Bless you all!

Good Night❤️

Tonight’s Prayer Request: MeeMaw met this wonderful lady at Ronald McDonald house and her daughter is also here at the hospital because she got hit by a car. She had a very horrific injury and the doctors told her she might never walk again but this woman is a woman of faith and she would not accept that answer. From the time of the accident until now, her injury has healed so incredibly. And of course, we all know it’s because of Him. Mom really connected with that woman but funny thing is though, they never exchanged names! We know that doesn’t matter because God already knows who they are. So tonight, I ask that you stand in prayer with me over that woman, her daughter, and their entire family. In Jesus name, Amen.

Monday Night Update from Justina:

Today might not have started out the best, but God turned it around and we ended up having a great day! Harlow woke up early this morning and was feeling warm so I checked her temperature a couple times and it was normal. Her body felt quite warm to the touch and her head hurt so I convinced her to take some Tylenol. Before we gave it to her, we took her temp again and it was 99.4. Nothing to be concerned about though, there was no fever, just her bodies response to the healing process. Within 10 minutes of taking the Tylenol she threw it all up. We cleaned her up and made her a fresh bed, but I was worried that she was going to struggle again with taking medicine throughout the day. She fell back asleep after that for a couple hours and once she woke up, we took our first walk and wagon ride for the day.

The nurse and I talked about it and we decided to give her the anti-nausea medicine again today (she had been off it for a few days) to see if that would help keep some meds down. That medicine is administered through the IV so the only downfall of going back to that is that we can’t take the IV home with us. We are trying to get her to the point where we can check off all the boxes with taking her medicines orally. But the big picture for today was just keeping her meds down especially the important one like the steroid. We gave her the medicine through the IV and that went over really well for her. After that, she took her steroid orally with no problems, so thank God for that!

After our first walk, she was tired so she was feeling some pretty big emotions during PT and OT today we tried going on another walk with them, but she was crying and really just wanted to go back to bed. We got back to our room and I sat at the edge of the bed with her and our activity was to make bracelets! She loves to make these with her daddy at home normally, but with her already eventful morning, she was not that interested. She was a trooper, though, and she picked out the beads she wanted and we took turns putting them on the pipe cleaner. i’m going to try to encourage her to finish it tomorrow with me. We did more resting after that.

She was approved to go back to the IV form of the omeprazole so we tried that but since her IV had been in since we got here, it started to leak. The nurse tried to re-bandage it but it just needed to go. So I talked with Harlow about her options; she could have a new IV put in which would mean a new poke, or she had to take the liquid medicine. She chose the new IV. What a brave girl! She tried her very best and listened to worship music while the nurse attempted to put in a new IV on her left arm first and then when that didn’t work her right arm. Both attempts were not successful. And at that point, we decided to just stop and give her a break and come up with a new plan. The nurse said she was going to call a transport team to get the IV in later on that day. I was sitting there holding Harlow‘s arm, singing worship songs with her and she was so brave and so strong and I was so proud of her. She chose the more painful route and that’s just a testament to her strength and resiliency.

Dr. Elsa came in today and we talked about her plan. Her drain was raised five marks so she is at a 15 now and every day we’re just gonna raise it more and more and pray that her body does what it’s supposed to do. Dr. Elsa said that now we have to watch out for any fluid buildup at the incision site at the back of her head and at the drain site. A little bit of fluid might be normal, but we cannot have it become excessive where it could push through the sutures and start leaking out. That would be a bad sign and would point to an infection. I believe this is not going to happen. I know that the Lord has her in his hands. I know that we have been waiting for the pathology results, but Dr. Elsa told me that we most likely will not get those results before we leave the hospital. From all indications thus far, it is the grade one pilocytic astrocytoma, and that is what she is being diagnosis with. I’m relieved to have a more clear answer and an officially unofficial diagnosis.

Another thing I learned today about Harlow’s healing journey was that in the afternoons, she needs to rest. The afternoons is when she becomes more emotional, more sad, doesn’t have much desire to eat or really do anything. The mornings are good, the late afternoon/early evenings are great, but the afternoon is where we struggle. Now that I’ve recognized that I’m letting go of any fear or anxiety I might feel during those times because I know that it’s her body’s way of communicating with me that she needs to rest and heal. I’m so thankful God opened my eyes so I could see and understand that today.

Later this afternoon, we took our longest walk yet and after we did that, she announced she wanted pizza! She ate her entire slice except for the crust along with more food after that. I read her a book that her friend Briggs got her and we listen to some more worship music. We talked with daddy and brother and by 730 she was sleeping.

This afternoon I did an interview with TV6 news that aired tonight. I felt so much joy and peace after I shared Harlow’s story and her testimony of God’s love and healing! I’ve attached the link below to read the article!

Cornell family thanks God for daughter’s miracle recovery

I want to thank the Lord for all of our blessings, every day. He meets our daily needs and is the ultimate Provider and Protector!

Tonight‘s prayer request: The woman who interviewed me was named Barbara. She’s also had two brain surgeries. She’s another miracle on God‘s list! I ask that you stand in prayer with me over Barbara. Lord, thank you for healing her and for bringing us together so we could share Harlow’s story. Jesus, I ask in your name for nothing but continued health, safety, and joy for Barbara. Amen

Also, please stand in prayer with me for our Little Light of Mine families and staff. There’s been a lot of sickness, especially Influenza A going around, so in Jesus‘s name, I ask for healing, protection, and safety over that whole facility. In Jesus’s name, Amen.

Good night ❤️

Tuesday night update from Justina:

Today has been the best day so far. Harlow woke up in high spirits, feeling great, and I could just tell today was going to be the turning point in her journey!

Usually, early afternoons she needs her downtime, but that didn’t seem to happen much today. She was talkative and interested and just her normal self basically the entire day! In the morning we finished her bracelet and we got it on her wrist and she was very happy about that. She initiated some of the walks today, and even added some of her own favorites to the grocery list. Speech therapy came today and they did some testing on Harlow where she had to look at pictures and answer questions and she did fantastic! It seemed to me she was doing better now than she was pre surgery!

Dr. Elsa came in and checked her incision, which is healing up nicely, and we discussed what the week would look like. Tomorrow they’re going to increase her drain again because so far her body has been tolerating it very well. Harlow actually gave her a fist bump and engaged in conversation with her too, so that was a huge plus! She told Dr. Elsa all about her dinner tonight, which was going to be steak with juice and broccoli with butter. Dr. Elsa said that she’s very happy with all of her progress and things are looking great.

Baby Pearl came to see us today and it just lit Harlow right up. She loves it when Baby Sissy comes and it makes her so very happy.

We also did more walking today and she went the farthest she’s ever gone today. She really wanted to use her wagon for her bedtime walk, but I wouldn’t let her do it. I made her go to her destination and back and she did it without much complaint.

She’s making such progress. Her body is healing up very well and today she didn’t even need any Tylenol or ibuprofen. I gave her some Arnica and rubbed some Arnica cream on her shoulders and back at her request.

Harlow’s great Aunt Jodie is here now for the week to help with everything and tonight she cooked us a delicious meal of spaghetti and salad. Harlow ate her steak and then she was ready for bed. An end to a great day!

Thank you so much for everybody that has helped us along our journey and all the donors and supporters as well. God bless you all!

Tonight’s Prayer Request: I would ask that you stand in prayer tonight with me over a little boy named Joseph who came in on the same day as Harlow. I pray John 14:14 over him and ask in Jesus’ name for complete healing, restoration, and comfort for him and his family. Amen.

1 Peter 3:9 “Don’t repay evil for evil. Don’t retaliate with insults when people insult you. Instead, pay them back with a blessing. That is what God has called you to do, and he will grant you his blessing.”

Wednesday night update:

Today has been another great day!

Harlow actively participated in all her therapies and made slime in art therapy! She’s showing more interest in the nurses and staff each day. For PT today they walked down to the gym and she was very excited to be in a different environment and play with new toys. Her balance and strength are coming back and I’m so happy for her. She walks like a little speed racer even though she complains it hurts her head and legs.

Dr. Elsa came in and said that Harlow is doing amazing! Her incision looks great too! They increased her drain today from 15 to 20 and her body is handling it exactly the way it should. There has been nearly 0 output which tells us that her body is absorbing the spinal fluid and taking care of itself just like it should. Tomorrow they are going to clamp the drain completely and see how her body handles that. If all goes well, they will do a scan to check her brain and see how everything is looking. And then they will determine if they want to keep her clamped for one extra day or transition to taking out her EVD completely! Please pray for her that everything will continue to go well so we can get her EVD out on Friday. By the grace of God, we are looking at a possible discharge date to be over the weekend or on Monday or Tuesday. It all depends on how things are going once they clamp her tomorrow.

The oncologist came to talk today and they’ve figured out the pathway of how the tumor originated. The gist of it is that during her growth from infancy to now when her genes and cells were replicating over and over, 2 genes ended up connecting instead of continuing to replicate independently. The BRAF gene and the KIAA1549 gene fused together and their replication generated the mass. He also said that if all the cells were extracted, then there will be no more fused BRAF-KIAA1549 cells left to continue replicating the tumor cells, meaning there will be no more tumor growth or regrowth. I’m not going to explain much further than that because I’m still trying to understand it myself. They are still doing a more specific check by RNA, but we have that information for now in our toolbox. Luckily, that is classic pilocytic astrocytoma, and that pathway is very well known and studied so we have a lot of medicines and therapies available to us in the event we need it in the future. So this is all good news! We have mountain moving faith all the cells were extracted and we won’t need any medicines in the future! Amen!

Today was a rough day for me though I will say. My mom and Aunt Jodie have been sick all day at the Ronald McDonald house, most likely from the Norovirus. So it’s been me and my beautiful daughters today and our Pearly Girl is a wild child! There’s only so much we can do in a small hospital room with an active 9 1/2 month old. So needless to say I’m exhausted and ready for bed. But we had an amazing nurse today, Alyssa. She went above and beyond to help me and care for my family! Another blessing from the man upstairs!

I knew yesterday was the turning point and today proved it! Another great day in the books. Thank you Jesus for today.

Tonight’s Prayer Request: I want to pray over our amazing nurse Alyssa. I pray for absolute joy and happiness and a future of nothing but blessings. She was so helpful and loving my family today, helping me with my daughters, and just always being attentive and loving. Thank you, Lord for the blessing of Alyssa. and all the nurses in West 7. In Jesus name, Amen.

Thursday night update by Justina:

Today was the best day!! She got clamped off completely today so she had no time restriction on movement. We had a really good walk this morning and spent a lot more time standing up. She did very well in the PT gym today but we still have work to do because she’s not strong enough to walk up stairs yet. Because she’s been doing so well walking and standing, it surprised me to see her legs give out when she was walking up the therapy stairs. Once she got to the top landing she was fine and I know she will continue to get stronger. Our Harlow is a symbol of hope and resilience. There’s nothing she can’t do with God in her corner!

Another fun thing today for both girls was playing together in the playroom. Harlow asked to go to the playroom twice today! We bowled, played cashier, and just hung out together. It was so nice to spend more time out of our room.

Speech therapy came today and we discussed her results from yesterdays session. Harlow tested within her appropriate age range, so that’s great, and she did some more testing on her again today. She was doing so good with her language skills, comprehension and recollection that the therapist feels that Harlow doesn’t require daily speech therapy any more at this point. She is where she was prior to surgery, if not beyond that. She needs to add up her score from today’s session but it looks like speech therapy will just be on a as needed basis. Thank God for that! Another miracle!

Dr. Elsa came and talked to me tonight and because Harlow has been doing so well, and it’s clear that her body is doing exactly what it’s supposed to do with her spinal fluid, tomorrow she will be getting a short MRI to check on her brain and see how her ventricles are looking. If all looks well in the scan, they are going to remove her drain tomorrow!!!!! Over the last couple days, her output has been so very small and she was not having any side effects today with her being completely clamped off. Doctor Elsa also said at this point, it’s clear she doesn’t need the drain so it’s best to remove it instead of leaving it in there and run the risk of an unnecessary infection. So let’s pray that the scan will look great and the drain will be removed tomorrow! And also pray that there will be no leakage or hydrocephalus creeping up once it’s out. Once the drain is removed they will monitor her for 24 hours and then if everything continues to go well, we should be able to go home!!!!!!!! Thank you Jesus! Harlow will be able to shower right away too, but no baths/swimming/etc until both incisions are 100% healed. So that’s going to be quite some time from now.

Mom and Aunt Jodie are doing better today but after our long day and night last night, I needed some help with Pearl today. So Papa came up to spend some time with us!! Tomorrow Auntie Tabby comes back and then hopefully by this weekend we will be home!

Tonight‘s Prayer Request: I would like you all to stand in prayer with me over Dr. Elsa. She is an absolute blessing to our family, to all the families here on West 7. God has gifted her and blessed her with an amazing ability to save the lives of so many children, and we are honored to have her as our Doctor. We know it’s not just her that has helped Harlow, it’s all the nurses, anesthesiologists, the other neurosurgeons on her team, and I’m sure so many other people that work behind the scenes that we don’t know. So in Jesus name, I pray for health, safety, protection and wisdom over Doctor Elsa and her team each and every day as they do Your Will here on Earth. In Jesus’ name, Amen. I would also like to think everyone here at Children’s for the love and care they provided Harlow and our entire family.

“but as for you, be strong and courageous, for your work will be rewarded.” 2 Chronicles 15:7

Good Night & God Bless ❤️

Friday night update

God is good!! So so good!! We got the drain out today!!!!!!

Harlow woke up strong and hungry at 4am, with Pearl not long after, but I took it as a sign for a good day! She ate, watched tv, and we snuggled until the resident neurosurgeon came in and said it was time for her short scan. I wheeled her downstairs in the wagon and 15 minutes later we were back up in our room. The results showed all good news. The ventricules were smaller than before and everything looked in order so we proceeded with taking out her drain. They wanted to do the procedure right here in our room, but the last 2.5 weeks here has made our room her little safe haven, as much as it can be anyways. I didn’t want to jeopardize her feeling of comfort and security so I suggested we do the procedure in a different room. The neurosurgeon loved that idea so I got her in her wagon and wheeled her a few doors down. I asked for some pain medication for her because I wanted her comfortable during this last big thing. She did not like getting the medicine up her nose. She struggled with the short procedure of taking out her drain, a lot of big emotions and pain, but the whole thing probably took 10 minutes. They had to add a little stitch to the hole at the top, but her drain is out! She is free! I know I made the right choice taking her to a different room because right when it was done and I hugged her up she asked to go back to her room to rest. We could’ve been discharged today, but I wanted to make sure she was monitored for at least 24 hours. Another blessing is that tomorrow is her last dose of steroid so we won’t have to administer any to her at home!

Art Therapy came once we got back to her room and she made some more slime, but like I said before she was having a lot of big emotions and she just needed to rest. Me and my girls took a 2 hour nap!

Another big win today is we took our first shower in 2 1/2 weeks! Harlow did very well, even standing on her own, spraying herself with water (and me, lol), but we were able to wash her hair and get her all cleaned up. She would not let us comb her hair or anything though, and I know that’s going to take a lot of OT to overcome that hurdle. Before this she was very sensitive about brushing her hair or washing her hair and it was often a battle of wills, so I can only imagine how much more traumatic that part of self care will be for her now. Please pray for her about this!

After shower time we went down to the therapy gym for our last inpatient session of PT!! She did much better without her drain! She was stronger walking up the stairs and she actively used her legs to help get her up off the ground!!! Progress! We will continue with outpatient PT and OT once we get back home.

With her drain out we no longer need the commode and she’s been doing so well walking to the bathroom. Any little thing to help get her back to feeling ‘normal’ will be important for her healing.

Tonight before bed she said her head hurt so I told the nurse, got her in bed with a cold rag, and continued praying! I know He’s got this, and I know she was doing great yesterday clamped off, so I’m giving it up to God, he will make a way no matter what. I have faith she’s ok.

Today has been another hard day for me mentally and emotionally. I’ve compartmentalized everything during these 2.5 weeks and now it’s starting to tumble out. I just keep thinking how these whole 2.5 weeks have just been so incredible, like it didn’t even happen. I can’t believe this even happened. I looked up the definition of incredible and it said:

1. impossible to believe.

2. difficult to believe; extraordinary

And that’s exactly how I’m feeling today. God’s love and how he’s blessed and protected Harlow are not impossible for me to believe because

I know His Word is truth and He tells us this:

“Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”Matthew‬ ‭19‬:‭26‬ ‭

But the whirlwind of these 2.5 weeks and the fact that our beautiful, funny, nurturing, loving, special daughter had 2 brain surgeries and was diagnosed with a brain tumor is just…incredible….

Tonight’s Prayer Request: This is our last night at Children’s Hospital. I ask that you stand in prayer with me over all the patients here on west 7. There are so many different stories, each of these children have their own journeys, there are little babies here and even older teenagers, and I pray in Jesus name for miraculous healing over all of them. I pray for total restoration of their bodies and their faith, for love and comfort for their families, and complete recovery. In Jesus name, Amen.

I also need to thank the Ronald McDonald House Charities for caring for my family and providing us a free place to stay during this time. We are blessed to have a room there. As a community I ask that you prayerfully consider donating to RMHC in honor of Harlow to help support this wonderful charity so they can continue to provide a home away from home for all the families that need it. Thank you.

Good Night & God Bless

Saturday night update:

Discharge Day! ❤️ It’s been 17 days since being admitted to the Children’s hospital, and tonight at 5:44 pm, we walked out of there free and clear!!!! Praise God! He is so good! What a blessing to have only been there for 17 days! Let that just sit with you for a minute…Harlow underwent 2 brain surgeries, one of which was 12 hours long, followed by PT/OT/ST, multiple MRIs, various tests, daily visits from neurology and oncology, etc, and her whole ordeal lasted only 17 days. It’s astonishing. A God given miracle. Thank you Lord for walking Harlow out of there whole and complete.

I requested one last MRI before we were discharged because of her headache last night. She woke up all bright eyed and bushy tailed this morning, feeling great, headache all gone, but I needed peace of mind that she was ok to leave. I didn’t want to take any chances of something happening on our 4 hour drive home. I thought the MRI would be right away in the morning but we had to wait all day. We were all getting antsy to leave. We packed up the room and just waited. At 4:12 pm I wheeled her down for her scan and of course He came through again because her scan looked great! No concerns at all!! Once we got the all clear we removed her last IV, put on her brand new tennies, and made our way out of her room. The hospital staff lined up along the hallway and cheered as she walked through. It was a little bit too noisy for Harlow and she cried, so we needed to pause a minute so I could comfort her, but once one of the nurses gave her a streamer she was all smiles again! She was so happy to leave, to walk out those doors and head to the elevator. She didn’t even ask to go in her wagon. We made our way to the parking garage, packed up our stuff and drove over to the Ronald McDonald house. We are staying here tonight but officially driving away from Milwaukee tomorrow morning.

When we got to the Ronald house, Harlow was so excited to see everything it had to offer. We went to the activity area and right away she wanted to do art! Leaving the hospital had been the best thing for Harlow‘s mental health. The things she loved and enjoyed were coming back to life inside of her. In the hospital. Art Therapy came every day, but it wasn’t until the last two days that she interacted and engaged with the therapist. Once we got to Ronald house, all she wanted to do was art. Her spark was back instantly. She painted two canvases, cut out little heart-shaped notes, and did not want to leave the room to go up to dinner. We ordered takeout which included a celebratory chocolate cake for our girl. Needless to say there was no grow food to be eaten at dinner for her, just chocolate cake and a glass of milk. She deserved it!

Another blessing and a show of absolute strength by Harlow was when she let me comb out her hair after her shower today. I thought for sure it was going to take her a while to allow that but she proved me wrong! My warrior! I’m in awe of her.

We’re all in bed now, exhausted beyond words, but filled with joy and peace and love. ❤️

We need to thank so many people starting with Children’s Hospital and RMHC. Thank you from the bottom of our hearts. Thank you also to the Gladstone Girls bball team and everyone involved in last nights fundraiser for Harlow, Dance It Up for generously paying for Harlow’s dance session, M & M hockey, NL church (our church home), Drifters, Cameron school, LLOM, and all our supporters! If I missed anybody, I’m sorry but no, we are so deeply grateful for your love and support.

Tonight’s Prayer Request: I pray for our beautiful, strong, brave daughter Harlow Jane. I pray that these 17 days remind her that she is strong, resilient, and loved beyond measure by her Heavenly Father. In Jesus name I ask that her mind and heart are protected from evil or harmful thoughts and nightmares. I pray each day for her is filled with joy and laughter and fun! I love you, baby girl. We are so proud of you.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah‬ ‭29‬:‭11‬ ‭

Good Night & God Bless ❤️

Sunday night update from Justina:

We’re home! Praise Jesus, we’re home! It was a long drive but we made it. We stopped at MeeMaw and PaPa’s to drop off my mom and take a break and Harlow was so excited to see her puppies Cedar & Maple. We couldn’t wait to get home though. Harlow kept asking the whole way “are we home yet?” When we got there Porter ran out right away and jumped in my arms. It was a long 17 days away from him. Harlow and Pearl were so happy to see their brother too. Our close friends were there waiting for us too so it was a great welcome home!

We are exhausted, run down, and in desperate need of a pause. I think my mind has finally given permission to my body to just let go. Another blessing though was last night at the Ronald house when I was nursing the girls I felt a let down of milk for the first time since we got admitted to the hospital. Being out of the hospital and only a day away from being home was the catalyst my body needed to let go of the stress. It was a welcome feeling and I thank God for giving me this body and providing me with everything I need to nourish my daughters.

The children are tucked in bed, sleeping peacefully, and now it’s our turn.

Tonight’s Prayer Request: I ask that you stand in prayer with us over our son Porter. It’s been tough on him having us gone, and not seeing me or his sisters for 17 days. I pray the Holy Spirit fills him with love and truth, and any negative or bad thoughts are cast behind him. I pray his little heart knows how much he is loved and adored. In Jesus name, Amen.

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” Romans‬ ‭15‬:‭13‬ ‭

Good Night & God Bless ❤️

Thursday Feb 13 update from Justina:

It’s been 4 days since being home and it’s been wonderful and an adjustment. Two nights ago Jake and Porter became very ill with either the bad stomach flu that’s going around or Norovirus. I was up all night with Porter. The next day I took care of the whole house while simultaneously praying for protection over me and the girls. Harlow cannot afford to get sick right now! So far our prayer has been answered because me and the girls are healthy and pushing through. Pray that continues!!

Harlow naps every day now, for a couple hours at least, and it brings me peace because I know sleep is healing for her brain. Her physical and emotional tanks are small and there’s only so much noise and business she can handle right now, which is all to be expected. Our days have been consisting of cuddles, watching movies, eating healthy grow food, and resting. Her incision is looking great, itching her a lot more, but she knows she can’t scratch it. She doesn’t like that I have to clean it twice a day though.

Her appetite right now is big! I think it’s a side effect of the steroid she was on for her brain swelling. I’m so grateful that she’s always been a good eater and this experience hasn’t changed that. Some of her requests are steak, chicken, cucumbers, and cottage cheese. The steroid has kept her eczema at bay so we’ve been letting her have high quality dairy products more than usual right now and she’s absolutely taking advantage of that! The nutritional benefit is more important right now. We’ll be addressing her eczema after we’ve gotten through these early days. Tonight we made protein chocolate chip cookies at her request.

Tomorrow we go to our primary doctor to get her set up for her PT/OT. I’m looking forward to that for her. I don’t want her walking up/down stairs without me or Jake helping because her legs are still weak but she sneaks on me and does it anyway. She’s so proud of herself when she walks up to the loft or picks herself up from a sitting position. It’s a beautiful thing to witness. She’s so strong and resilient.

God is so good and I’m in awe of His good works in Harlow every day. Her little amazing personality hasn’t changed, her beautiful loving heart hasn’t changed, and her intelligent curious mind hasn’t changed either. We are so blessed. Sometimes I feel like those words don’t convey enough the true gift that is our current reality. I don’t know what words would encompass the full magnitude of what we’ve come out the other side of. Truthfully, no words will do it justice. But I guess these thoughts and feelings don’t come from words; they come from our hearts.

“Above all else, guard your heart, for everything you do flows from it.”

‭‭Proverbs‬ ‭4‬:‭23‬ ‭

Tonight’s Prayer Request: I ask that you stand in pray over our household that we will continue to be healthy, whole and complete. No sickness can touch us with Him on our side. In Jesus name, Amen.

Monday Feb 17th update by Justina:

It’s been 1 week since returning home and we are still working on settling in. Harlow is doing very well though and I’m so happy to report that her little big personality is still perfectly in tact!

We have our first PT appointment this Wednesday and I’m looking forward to it for her. Next week I’m taking her to an appointment with our Functional Medicine PA because I want to make sure her body’s not deficient in anything, that it’s getting everything it needs to continue to heal properly, and to check her overall health. We need to stay on top of her health and nutrition so she can continue to heal and get stronger.

Children’s hospital called me today and they wanted me to send a picture of her incision so Dr. Elsa could check on it. I sent over a couple photos and Dr. Elsa reported back that it looked great, absolutely zero sign of infection, and to keep up with cleaning it daily.

We went outside today for a little while and all she wanted to do was eat snow! That’s her favorite thing about winter.

She’s still doing art every day, helping me make nutritious food, playing with her baby sissy, and loving the fires in our fireplace.

One thing she’s struggling with right now is her emotions. She’s quick to get angry and frustrated or having her feelings hurt. She’s also extremely attached to me. Porter and I went on a date on Saturday night and I was only gone for four hours, but she struggled with me being gone. There was a lot of crying and asking for me but eventually Jake was able to comfort her. I will be setting up counseling sessions for both her and Porter. He might not have gone through the same experience as Harlow physically, but he was affected just as much.

Once again thank you to all the supporters and donors! Please know I am working on thank you cards for those of you who have sent gifts directly to our house, and also plan to reach out to other people online that have contacted us as well.

Tonight’s Prayer Request: I ask that you continue to stand in prayer over Harlow and our entire family as we continue to navigate this new way of life.

“Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.”

‭‭Mark‬ ‭11‬:‭24‬ ‭NIV‬‬

Good Night & God Bless ❤️

Sunday 2/23/25 update from Justina:

Week 2 down in the books!

Harlow has been loving being at home with me. We have not ventured out much or done anything outside of the home because there is too much sickness going around right now and we need to keep her healthy and strong so she can continue to heal. She seems to be totally content with just staying home with me and has not complained of being bored yet.

I’ve been coming up with fun things for us to do each day but I’m working on more of a daily routine for all of us. “Faith and Family” is our moto now and it’s the driving force that keeps us going. This week we made homemade pizza and she helped me make the dough from scratch! It was fun, and delicious, and the best part was I knew my family was getting healthy organic ingredients. She asked me to put on her worship music so she could dance and we had a tea party. She said it was everything she wished for.

On Wednesday we had our first PT session. She struggled with staying focused and on task, which is something they told us would happen, and being in a new environment with a lot of fun stuff to touch was too much to resist. She was able to walk for 6 minutes without getting too tired, walk across the balance beam, and did some stairs. In March she will be adding OT as well. As we continue with weekly PT and OT sessions, I’m confident in her ability to focus and be successful! Nothing will stop our girl!

One of my most favorite things she said to me this week, and I will never forget it, was on Thursday. She was watching something on TV and she said “Mom, ghosts aren’t real. The only ghost I believe in is the Holy One, that’s God. Or Jesus. God and Jesus are the same thing.” I was just in awe of her. I was blown away. I wasn’t expecting her to out of the blue say something like that but I’m not at all surprised. She is special, anointed, favored. She has a relationship with Jesus and it shows. What a blessing. Proud of you Harlow.

Her grandma and grandpa visited her this week and she got her nails painted! One of her favorite things!

She took a tumble this week too. She was running a little and fell in our living room and hit her forehead. She got a good sized egg but seemed OK and assured me she was fine. But I took a picture and contacted her care team right away. They advised to watch for the same signs I would for any child who fell and hit their head and to keep an eye on her incision to make sure the skin isn’t coming apart and it’s not showing signs of infection.

She’s been crying every day about not wanting to go back to the hospital to get a poke so we’re trying to help her through that fear. I tell her “we’re not doing that today” but I do remind her that we have to go back on March 12 so they can take a quick picture of her brain, but there will be no pokes that day either. I double checked with the hospital and her scan on March 12 will not require any sedation. For now, we are taking everything one day at a time and that is what our conversations are focused around. When she has questions like that or fears, if it doesn’t apply to the current day then I tell her “not today”. I pray it’s helping her.

At the end of this week, Jake and Porter will be going on the Hass family Disney vacation and Harlow is sad that she won’t be going. I can only give her words of love and encouragement and tell her that we will have our own fun together here with baby sissy. I also tell her the truth though that she cannot go on a vacation like that yet because she just had brain surgery and she would not be able to enjoy all of the fun stuff like swimming and going on rides because of that. And I tell her that I want her to be able to have the best time of her life when we go to Disney and so we have to wait until she’s healed up. I pray my words help her to understand and accept why she can’t go.

A little special gift arrived in the mail this week! My breastmilk earrings made from the last night she nursed, her birthday December 11. They are beautiful and even more special to me now. Her headaches started right after we stopped breastfeeding and a month and a half later our lives changed forever. She’s back to breastfeeding now and I’ll have to get another piece of jewelry made just for her to honor her journey.

Prayer Request: I ask that you stand in prayer over Harlow and her fears about going back to the hospital. I pray for peace and courage over my baby girl. I also ask that you pray for safety for Jake, Porter, and the rest of our family as they go to FL. In Jesus name, Amen.

“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.” James‬ ‭1‬:‭12‬ ‭

Goodnight & God Bless

3/5/25 Week 3 update from

Justina.

This week I took Harlow to our functional medicine doctor and she will be starting a full body detox to cleanse her body of all the medications, anesthesia, sedation medicines, etc she was subjected to, and she’s going to start taking a liposomal glutathione supplement. Glutathione is an important intracellular antioxidant that helps repair damaged cells, is involved in tissue building and repair, making chemicals and proteins needed in the body, and in immune system function. In addition to that she will be getting a GI Map done, a mycotoxin test to test for mold, and a hair/tissue/ mineral analysis (HTMA) test done to test for heavy metals. We feel this functional approach to her healing is crucial to protect her brain and body now and in the future.

We’ve had 3 sessions of PT now and Harlow is doing really well! She did an arch activity for squats to strengthen her legs and walked backwards pulling a big 10# rope. With the arch activity she is still wobbly getting into the squat position and teeters on her toes. She had her first OT session today and really loved the sensory swing! Harlow is very smart, asks meaningful and intentional questions to others in conversation that make her seem older than she is, and I love hearing her talk. Her recall is top notch and very impressive. The hardest thing during PT/OT is getting her to listen and follow directions. Her attention span is very low, and she’s very over stimulated in that environment. This behavior is new compared to before. She was always a good listener, we rarely had to tell her to do something twice, so this is a major change. We are struggling with this at home too. Dr. Elsa told us that she would most likely show signs similar to ADHD and have problems with attention, and that is clearly happening. Dr. Elsa explained to us that now with the tumor gone, there is empty space where it had been so that will be an adjustment neurologically. Also, the swelling on her brain from surgery plays a role in her behavior changes too. We’re hopeful that the changes we’re making to her health at the functional level will combat these symptoms and she’ll recover from these side effects quickly. For now, we are praying a lot for patience.

We went to the library this week and Harlow’s best friend Ruby came too! She was so excited to play with Ruby and the library was the perfect environment for Harlow. Last week we had gone to the grocery store and then to Hobby Lobby but that was too much for her. She had a major meltdown at Hobby Lobby and I had to carry her out of the store. So I thought the library would be perfect. She was able to still play and interact but in a more quiet and peaceful environment. We will be going to the library weekly from now on.

Her puppies Cedar and Maple came to visit on Sunday and she was over the moon!!! She misses them so much!

Tonight Harlow put up her Bible posters she got from Auntie Tabby all around the house because she wants ”everyone who comes over to know about the Lord”!

Next week we have our first scan since leaving the hospital. It’s a quick brain scan to check on the status of her brain and ventricular swelling, so we’ll be preparing Harlow for that with more conversation and reassurance that she won’t be getting any pokes. After the scan we meet with Dr. Elsa so please continue to pray for God’s favor for us for that day. We have faith that God already has the answers we want and that he will provide us with everything we need for that appointment.

Today is Ash Wednesday! A very important day for us, and important time of year. I’ve always participated in Lent, but this year it takes on an even deeper and more profound meaning for me and my family. We are so blessed to have our beautiful daughter Harlow, and so blessed to have a relationship with Jesus. I pray that each and every one of you reading this will accept Him into your heart as your Lord and Savior, so you can live the abundant life He has planned for you. He loves you! He is real! He is a miracle worker! Harlow is proof!

Once again, thank you all so much for the continued prayers, for reaching out to us, for the generous donations and gifts for Harlow, and for your love and support. We love our community and we appreciate all of you and your big hearts so much! I’m still working on thank you cards!

Prayer Request: Please continue to stand in prayer with us over Harlow and her recovery. Pray for behavioral healing as well as physical, and for patience for all of us as we continue to navigate through our new normal. In Jesus’ name, Amen.

“For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.” John‬ ‭3‬:‭16

3/10/25 update from Justina

Big week this week! We have our first scan on Wednesday March 12 so please continue to pray for our Harlow! The purpose of the scan is to check on her brain and ventricle swelling followed by a consultation with her neurosurgeon Dr. Elsa.

What we ask that you pray for specifically:

1. Stand in prayer with us at 12pm CST (her MRI is at 12:30 and our consultation is at 1p)

2. No brain swelling

3. Ventricles are back down to normal size

4. Zero signs of any tumor left behind or any tumor activity

5. The brain/body are doing exactly what their designed to do in regard to her cerebral spinal fluid

6. Swelling on her optic nerves are gone

7. Safe travels to and from and that we won’t need to stay over night

8. Positive, uplifting conversation with Dr. Elsa

After her appointment Jake and I will have more information on where she’s at neurologically so then we can decide if/when she’ll return to school and what that would look like. She definitely won’t be going back full time like she was before though.

We have a double whammy tomorrow with both PT and OT so I’m hoping she’s not too wiped out after.

Auntie Tabby and Lucy are here with us now for the next 3 weeks and we’re so happy!

I will post another update either Wednesday night or Thursday after her appointment.

“Now this I know: The Lord gives victory to his anointed. He answers him from his heavenly sanctuary with the victorious power of his right hand.” Psalms‬ ‭20‬:‭6‬ ‭

Good Night & God Bless

3/14/25 First Scan Post Surgery Update from Justina.

OUR GOD IS AN AWESOME GOD! He answered our prayers! The first thing Dr. Elsa said was that her scans looked amazing! There was no swelling, her ventricles have significantly shrunk to a healthy size, the CSF is filling in areas it’s supposed to and flowing properly, and most importantly, even though it was a quick scan and not her full comprehensive one it showed no nodules or anything from the tumor! Dr. Elsa also said that “her brain looks like a healthy brain”!!!

She is still on full restrictions because there’s a little piece of her skull that they put back and it has not reintegrated back onto the rest of her skull yet. It’s a very fragile piece and if anything happens to that she would have to have another brain surgery to repair that piece of her skull. So she can’t do anything really physical like recess, jumping on a trampoline, gym time, swimming, that sort of physical activity for a couple months yet. Next week we’re going to try 1 hour a day at school and see how that goes for her. We’re all excited for her!

We talked about her more rambunctious personality now that the tumor is gone and Dr. Elsa made a really good point. She said that if her tumor hadn’t been there, the way she is now would probably have been her “normal”. That the tumor was most likely causing her to be a subdued version of herself due to it being there for so long and causing so much pressure on her brain.

Since her healing is going so well we won’t need to go back until our scheduled appointment at the end of April. We’re so happy for the good news and so grateful for everyone’s love and support! Thank you all!

“In him our hearts rejoice, for we trust in his holy name.” Psalms‬ ‭33‬:‭21‬ ‭

Good Night & God Bless!