Jacob’s Journey

Fun fact:
Jacob doesn’t like ice cream.
But will he eat it when there are gummy bears in it?
…nope.. just eats the gummy bears 😎🤪

Happy Independence Day ❤️🇺🇸💙

Jacob had a spinal tap today. Thank you God that it was successful 🙏🏻
He wanted to come home and string his new beads he got at clinic. The bravery and strength in this boy is amazing.

POV: They see a full head of hair and assume he’s done with cancer treatment.

REALITY: He gets chemo everyday. The symptoms are a rollercoaster. Today we are fighting nausea and vomitting.

Happy Fathers Day!
Extra Happy Father’s Day to this one that is always so calm, fixes everything, is extra organized, always optimistic, smothers his boys with love everyday, works hard and never complains, and puts his family first before anyone. Our household wouldn’t function without you🩵🩵

What a difference a year makes.
Thanking God everyday for Jacob’s strength 💪🎗️
1 year and 2 more months left of chemo treatment and spinal taps!

🙏🏻🇺🇸❤️

This past Wednesday, May 22nd marks ONE YEAR of Jacob being in remission!

One full year!
Thank you God for this milestone!
We have so much to be thankful for!
He still has 1year+3months left of treatment. We are chugging along.
🙏🏻💛🎗️🧡

Happy Mother’s Day to all the mommy’s!
I sure am extra thankful this year for having both my boys here with me!

Yesterday afternoon Jacob kicked butt in physical therapy and then in the evening he received his yellow belt at karate! We celebrated with ice cream!
We are so so proud of how far he has come! 💛

Video of him getting his belt is in the comments, Facebook wouldn’t let us upload it together for some reason

Another successful LP/chemo day 💪

A post from Jacob’s Daddy:

If you don’t want to read a book, I just want to say thank you to everyone who has been there for us and Jacob over the past year. I haven’t posted much lately because things have been good and I’ve been busy enjoying it. No news is good news here, but on this anniversary I’m kind of just reflecting on the last year.

1 year ago, today Jacob was diagnosed with leukemia. It was the worst day of my life, I remember being in denial at first thinking there’s no way this happened to him. It all became real when the doctors showed us his blood tests and explained what it meant and started discussing his surgery to have his port put in and what his chemotherapy plan would be. After it all sank in I remembered that weeks before his diagnosis how Jake was crying a lot, sleeping a lot, no appetite and just not himself. He had leukemia in his blood at that time and we had no idea. One day Jake was a normal 4-year-old boy and the next day he was getting poked repeatedly for blood tests, crying that he wants to go home, and getting scheduled for surgery so he can start chemotherapy. It broke me, I felt helpless but I knew there was no other option and that he had to go through it all to have a chance at life. We spent the majority of last year admitted to the hospital, driving to the hospital for treatment, isolating ourselves from everyone and all the fun stuff we wanted to do with the kids. Every day was up and down managing side effects and we just tried to keep as positive as possible for Jake to get his mind off everything. He had some very rough days/weeks/months, but was resilient and overcame a lot of fears he had and I’m so proud of how brave he is.

I mostly want to thank everyone who has helped us one way or another over the last year. Thank you doesn’t even cut it for how grateful we are. Our family for stepping up when we needed help with the kids, helping at home with things we just did not have the time for, bringing us food, for collecting donations, and setting up an amazing fundraiser that completely exceeded what I could have ever imagined.
My co-workers for all the fundraisers, donations, gifts sent to Jacob, prayers, and tons of moral support in the toughest time I’ve ever had to deal with. I’ll never forget what you all did and those who went above and beyond to help my family out. Everyone from friends, family, co-workers, old classmates, and strangers who prayed for our family, donated, held fundraisers, and sent Jacob or Adam gifts. The amount of support we received so quickly took the stress of finances off our minds and made it so we were able to be with Jake at the hospital as much as possible and keep him comfortable and not have to worry about work or how we were going to pay bills. The unbelievable number of gifts that were sent to Jake was a game changer during treatment. Jake was so afraid in the beginning of nurses, doctors, phlebotomists, taking medicines, and all of the things he had to go through that are so scary for a child. The gifts were used in a way to get his mind off of the tough things he had to deal with and reward him for being brave and pushing through. It also helped us seeing him smile every time he got to open another box. Those smiles and his excitement meant the world to me and helped me cope with seeing him deal with all of this.
I also must thank all of Jacob’s wonderful nurses and doctors that we have met along the way. We have become so close with some of you after spending more time with hospital staff than our own families over the past year. We had so many amazing nurses that were so patient with Jake, advocated for him and us when needed, and were just so good at making it as comfortable as possible when things were tough. I credit Jake’s doctors that he’s still here. December was the most afraid I was for Jake when he had absolutely no immune system for about a month. Jake was dealing with appendicitis, infections, and sepsis and his body did not have the resources to deal with everything being thrown his way. His doctors made the right decisions for blood tests, antibiotics, surgery, and medications all while trying to keep his chemotherapy plan in mind to keep the leukemia in remission. That month right through Christmas was the worst part of Jake’s treatment by far. There was a point I thought we might lose him.
I thank God we still have Jake with us and he’s doing well now. When Jake was diagnosed I was angry with God. Why him? I would switch places with him in a heartbeat, no child should have to deal with this. I didn’t understand why God would let this happen. The best answer I’ve gotten throughout this was that this is Satan trying to push through and break our faith in God or that this will make Jake into a stronger human being having to go through this. I’m still unsure how I feel about that, it’s just not fair, but I didn’t let it shake my faith and I thank God every day that Jake’s still here, still in remission, and doing well with treatment.
We have about 1 year and 5 months to go of the maintenance phase of treatment. Our lives kind of feel like they’re back on track now. Jake missed out on a lot of fun last year, so did his brother Adam. This year won’t be like last year. Jake’s well enough to be around people and enjoy the nice weather. I can’t wait to make up for last year and do tons of fun stuff with them, they deserve it. Lots of positivity and good things in our family’s life lately, from the bottom of my heart, thank you everyone who has been a part of that and has been with us through this.

In honor of PET DAY!
Jakey loves his dog and cat soo much 🐾

Today Jacob went under for another spinal tap with chemo in the spine and also a 2nd chemo through his port. He did great, we are so thankful everything went smoothly 🙏🏻

He’s gaining weight which is great, and with that comes changes with his at home chemo meds to slightly a bigger dose.

This week he’s on steroids again and that means we will have an even more hungry Jacob on our hands 🤪

We are all tired from a long day at clinic. Jake’s cuddled up on the couch with his little brother and kitty cat ❤️

We hope everyone had a great Easter!
We had a great Easter weekend spending the day with Mimi, Pop Pop, Aunt Sam, and cousin Oliver! This was our first holiday we were able to spend with family in over a year! It was so nice seeing the boys all playing together. Our hearts are bursting with joy as we soaked up all the smiles, laughs, and excitement on the boys faces!
Church was so fun, they had real bunnies there for the kids to meet. Jacob and Adam loved holding the Easter Bunnies and laughed at how their noses twitch. Now Jacob keeps asking for a bunny 🤪

A lot has happened in this last month.
🤍Jacobs hair really grew back
🤍Jacob gained a lot of his weight back and has a great appetite
🤍Jacob is reading and spelling
🤍We sold our home and moved to be closer to family
🤍Jacob is officially potty trained during the night (with occasional accidents) this is huge because all the hospital stays really delayed this process
🤍We registered Jacob for Kindergarten and Adam for pre k
🤍 We mourned the loss of Jacob’s great grandmom and had to break that news to Jake but he understands she is in heaven with Jesus and that she is watching over us all
🤍Jacobs improving with balance, walking, running, strength, and socializing thanks to karate a few nights a week
🤍 We joined a new church, and everyone is so welcoming and the boys absolutely love it there
🤍Jacob was nominated as a Super Hero through Small but Mighty Heros. We forgot to post about that through all the chaos.
🤍 Jacob’s fairy godmother from Make A Wish has been in touch and we are still unsure what he wants his wish to be. It changes everyday because he’s 5 lol. He’s really into elephants right now and keeps saying he wants to meet one. But we still have over a year to decide since we don’t want to do his wish until he’s completely finished with treatment.

Jacobs ANC levels went up last week and he was able to restart chemo. He’s doing good! This Thursday he has another spinal tap and they will administer more chemo into his spine as well. Please keep him in your prayers, spinal tap days are never fun. 🙏🏻

Jacob’s ANC is still low as of yesterday’s lab results. In fact it dropped even lower instead of going up.
He’s still on a chemo hold. This will be 3 weeks of holding chemo.
Thankfully Jakey is feeling good! He’s definitely susceptible to getting sick very easily right now, so we are staying in our little bubble 🙏🏻

Jakey and his best pal Kira ❤️

Getting ready for Easter 🐣🐰✝️💛

Clinic Day.
Jacobs counts came back low today, he’s neutropenic again so he’s on a chemo hold for a week. Next week we will get labs drawn to see where his counts are and if we can resume chemo.

He’s gaining his weight back, getting a little taller, and had fun playing with his care team.

His Dr gave his Trex and Elephant a check up today too and his Dr showed him a photo of an elephant he has in India. Jake was so amazed!

These photos came up in my memories.
Baby photos of Jacob! 🥰❤️

The HAIR!
The way the new growth of hair is sooo soft like a newborns hair. I remember Jacob’s hair feeling so unbelievably soft when he was a little baby and now to experience it all over again is just 🥹❤️

No more sticky bald head from the intense chemo. Jacob wakes up every morning so excited to show us his hair. He says “Mama look at my nice hair!”

In the thick of intense frontline treatment ➡️ to now!
Jacob is looking so healthy! ❤️

Successful Spinal Tap and chemo day. Kicking leukemia right in the butt! 💪

Jacob is doing sooo good!

He’s been asking us to do karate, so we signed him up. He loves it! We hope that karate helps him rebuild his strength and that he can make some new friends.

Jake has put back on the weight that he has lost during the very hard chemos. He feels solid and is looking soooo healthy!

He has been such a trooper taking his oral chemo meds 💪💊

Life feels normal again and we are loving it 🥰

Next week he has a clinic visit and will receive a spinal tap, and chemos. It’s been weeks since we have seen his oncologists and his nurses, we miss them! It will be nice to see them and show them how Jacob is thriving!

Jacob’s doing so good!
This week has probably been the happiest we have seen him in a very long time. He’s been running around playing with his brother non stop ❤️

•Day 1 of Maintenance complete. ✅

•Only 1yr and 7months left to go 🙏🏻

Thank you everyone for reaching out, Jacob is doing well today. He’s pretty sore and not doing the stairs today. But that’s to be expected. He’s hanging out with us today on the couch and playing a little bit. We think tomorrow he will be feeling a little more better.
Praise God that he’s doing good! ❤️🙏🏻

Jacob got squeezed in today for his appendix surgery. Everything went great for him! We are relieved to get this done with so we can start chemo back up.

Next week he will officially be in the maintenance phase of his chemotherapy treatment! We have a spinal tap and chemo scheduled for next week 🙏🏻

Thanking God so so much for a successful surgery and for all of the great medical professionals for taking the best care of our boy 🤍

Whoever sent Jacob this shirt, thank you so much!

We have an in range ANC! 🙌
Unfortunately there’s no slots open this week for his surgery but they have him in for the 9th and if they get a cancellation they will move Jake up.