Jackson’s Journey

Good morning from beautiful Connecticut! It is 74 degrees and PERFECT!

We have a few hours before our adventure starts, so I have included proof that we actually traveled through Rhode Island (because who actually goes to Rhode Island, sorry not sorry 😂) We’ve checked off two more states that we’ve never traveled to. 😁

We laughed at the one lonely windmill and I caught serious hell for how I pronounced windmill (still not sure what I said to make it so funny 😂).

Jackson’s still sleeping, so I should probably wake him soon. I don’t think he’s moved at all since he went to sleep.

It’s gonna be a long afternoon. We meet our host at 3:30 and head to meet you know who and tour you know what! Dinner and filming begins at 5pm. Filming should end around 9pm IF Chef doesn’t close the kitchen early. We shall see how it goes. More than anything, we just want to know that hems on after his horrific bike accident just last week. Yep, he’s been in the hospital here in Mystic for awhile. Literally almost lost his life. Probably would have if he wasn’t wearing his helmet. So, the lesson for the day is, where a helmet when you cycle. Even if it’s your children and they’re just outside.

More later!

And we’re off!!!

If you haven’t donated to Make-a-Wish, I promise you, it’s a very worthy cause.

Obviously, this trip wouldn’t have been possible without them! 🧡🎗️

Donate - Make-A-Wish Make-A-Wish is the premier wish-granting organization for children, including Make-A-Wish America and local chapters, and Make-A-Wish International.

It’s almost time!!!

We literally just went to Gainesville a week ago! 😂😂😂

We’re headed back today for our appointment with endocrinology. There’s a few things that have been going on - that we don’t necessarily want to blast on the interweb, so we just ask for your prayers today. Nothing cancer related, but definitely after effects of the chemotherapy. Anywho, not quite ready to discuss, just here to ask for good thoughts for a productive, favorable appointment.

Jackson’s Make a Wish has also come to fruition! We leave Sunday to head to Foxwoods Casino in CT to tour the Hell’s Kitchen set, meet Chef Gordon Ramsay, and attend the nightly taping of the show! We will be gone Sunday through Wednesday! We’ll chronicle our visit at that time!

Due to scheduling issues and our Make a Wish trip, today will be our last visit to Gainesville this month! We’ll have labs taken here in town and skip our physical check. But we’ll be right back on schedule for July for clinic and his day long neuropsych testing. Joy!!!

Anywho, gotta get on the road! Pray for me, because I am one tired mama today!

Awww yeah! Another milestone hit!

I know it doesn’t seem like much to some, but this is literally our last bottle of profilactic antibiotic from Jackson’s chemotherapy. His ANC and other labs have been wonderful, so it seems like his immune system is working nicely again! Not counting this weekend, he will only have 3 more weekends to take his antibiotic!

June is going to be a super busy month for us! We travel to Orlando (for fun), have our Make a Wish trip to meet Chef Gordon Ramsay, have all different appts for Jackson (endocrinology, neuropsych, clinic) all on different dates - so lots of trips to Gainesville, and then our big trip for 10 days to Las Vegas at the end of the month/early July. I think we’re home for like, 5 days! 😂😂😂 Actually more than that, just feels like 5!

Anywho, hope ALL of you guys are having a happy beginning of your summer!!

And it’s a wrap on the 2023-2024 school year!

I know that I posted previously that Jackson had completed his exams, which he did, but he still had state testing to contend with. He has completed everything for his Junior year and made a Level 5 (highest score possible) for his US History EOC and his ELA testing that we opted to not take last year. Both of these were state graduation requirements, so it’s a relief that they’re done. ✅ His US History EOc was not only a graduation requirement, it also counted for 30% of his final grade. Since he made a 90/A on it, his overall grade stands at a 95/A for the year!

Registration is complete for next year and we’re just waiting for a call from his guidance counselor. He only has 3 credits left to complete, so his Senior year should be a more relaxing one! 💕 He sure does deserve it!!

My god, Senior year, y’all! I’m about to call and schedule his Senior photos. Please pray for my mama heart! 🎓 T-minus 356 days until graduation!

Jackson’s finals are over for 11th grade. All As again for the year! He’s now officially a Senior! Can anyone tell me? Literally, where does the time go?

Another clinic appt down. We are now officially 4 months off treatment. Labs look fantastic and so does he!

Had a last minute psych session. Sigh. It was tough. Not sure what they talked about after I left, but I do know that he felt confident enough to finally tell one of his female friends that he’s had a crush on her for awhile. And she has been feeling the same way. So they are giving it a go and trying a relationship.

Y’all pray for me.

It’s finals time in this house and another one has been completed.

Jackson only has one more final, English, that he’ll complete tomorrow after a quick conference with his teacher and then it’s the official end to 11th grade and hello Senior year!

And yes, he has made straight As so far again this year, bringing his high school cumulative weighted GPA to a 4.1, with cancer and in treatment for 2 1/2 of the past 3 years.

Un-freaking-believable! Yeah, my kid is amazing!

I, on the other hand, still have 24 days of school - 5 weeks! Come on summer break!

Today is AML awareness day. This is half of the cancer that Jackson was diagnosed with.

Below are some facts about AML.

What is acute myeloid leukemia (AML)? Acute myeloid leukemia (AML) is a cancer of certain types of white blood cells.

AML starts in your bone marrow, the spongy tissue inside your bones. Certain types of very young cells (called myeloid stem cells) in your bone marrow, that should develop into different types of white blood cells, instead have a miscommunication and mutate and become cancerous. The cancer cells grow and spread into your blood and to other parts of your body. The cancer cells re contained in the bone marrow until it is 100% “packed” and then they spill over into the blood to spread or metastasize everywhere in the body.

"Acute" means this type of myeloid leukemia spreads very quickly and needs immediate treatment. It is life-threatening.

Even though AML is the most common leukemia in adults, it can and does happen to people at any age.

You may be tired or pale, get infections and fever easily, and bruise or bleed easily.

Doctors do blood tests and bone marrow biopsies/aspirations to find AML.

AML is currently treated with chemotherapy.

Sometimes AML is caused by chemotherapy or radiation therapy that was given to you to treat a different cancer. And this SUCKS!

Without treatment, most people with AML die within a few weeks to months, but with treatment, between 20% and 40% of people can be cured. Only 20 to 40% will survive - this is a staggering statistic!

🧡 Donating blood and platelets saves lives. I cannot even begin to count how many blood transfusions and platelet transfusions that Jackson had.

Be sure to contact your local American Red Cross, One Blood, Lifesouth, or other local blood donation center for a local donation drive!

I really need someone to tell me why. And if you know why, then I really need for you to break it down and explain it to me.

Why are so many kids all of a sudden being diagnosed with pediatric cancers in my area? From Panama City to approximately 2 hours out in both directions. Seriously. Wtf is going on??

Rare cancers like Jackson’s. MPAL. Seriously. MPAL is only 3% of all pediatric cancers. They didn’t even have a treatment protocol when Jackson was diagnosed 32 months ago. They still don’t.

I’d say, “Don’t get me started…” but I’m about to get started and no-one’s gonna like it. When I get started, I sure hope you’ll join me!

Another huge THANK YOU to the Biden Administration!!

They just announced a new rule that reigns in discriminatory junk insurance plans that deny and restrict coverage for cancer patients!!

Thank you!

Short-term health plans can hurt those who need quality care the most, like cancer patients. Why? Because they aren’t required to follow the same rules as traditional insurance—and leave patients with huge bills. That’s why we’ve long called for reining them in. Today, we’re elated to applaud the White House for a rule that will do just that.
More 👇🏽 https://www.lls.org/sites/default/files/2024-03/March%202024%20STLD%20rule%20coalition%20statement_FINAL.pdf

It’s another great day in the fight against childhood cancer‼️

Over the weekend, Congress passed a spending bill that contains critical funding for pediatric cancer research, a key component of the Childhood Cancer STAR Act. As you know, childhood cancer patients aren’t simply tiny adults, they have unique needs that often times aren’t addressed by typical, adult-focused studies. Period.

Also included in the budget is significant funding for an innovative data-sharing program, the Childhood Cancer Data Initiative, that allows researchers to gather and analyze data from pediatric patients across the country, helping fuel research into new, breakthrough treatments‼️

Our actions really do play a vital role in our ability to convince lawmakers to support these lifesaving initiatives.

It has certainly been an exciting and successful month for the Leukemia and Lymphoma Society and all of our advocates.

- Last week I announced a big win for cancer patients covered by Medicare, celebrating the final step in setting up a new program that helps patients afford their prescription drugs.

- And now we’re able to celebrate this important victory for children and their families by securing funding for much-needed pediatric cancer programs.

But listen, we all know our work is far from done though. Congress has already started to prepare next year’s budget, and NOW is the time to ensure pediatric cancer research funding is prioritized. This means we must double down on our efforts by growing our network of advocates and creating an even louder and more powerful voice.

Are you willing to join us in fighting for the needs of children and adults facing a blood cancer diagnosis?

If you are, simply text TODAY to 73727 now to start your advocacy journey with us‼️

💕

Kate Middleton, Princess of Wales, after revealing cancer diagnosis: "For everyone facing this disease, in whatever form, please do not lose faith or hope. You are not alone."

More here: bit.ly/3vcqXta

Sterling is another sweet soul with MPAL. Unfortunately, traditional chemo has not worked for him and he is headed to transplant.

If you could pray for this family, we certainly would appreciate it!

Better yet, if you’d be willing to submit a swab, you just might be the one that could, quite literally, save his life!

TEXT Swab4Sterling to 61474 to receive your free kit!!

Atlanta family works to raise awareness for people to become bone marrow donors An Atlanta family with Huntsville ties is raising awareness of the urgent need for bone marrow donors as they search for a perfect match for their two-year-old son.

Excellent news received while on vacay!!

HUGE win for cancer patients!

New Biden Admin rule makes it easier for Medicare patients to spread out drug costs across the whole year.

Thank you, President Biden!!!

Advocacy, while exhausting, is a vital part of our journey!

🎉 Join us in celebrating a huge win for patients covered by Medicare! Last week, the Biden Administration announced changes that will more easily allow patients to participate in a program that spreads drug costs throughout the year.

Rather than paying $2,000 out-of-pocket all at once for their prescriptions, patients will instead pay $167 a month, with no extra charges or fees. 🙌🏽

Day 1 of adventuring is done. And man are we tired! We got fitted for all our gear and headed for our snowboard lessons. Jackson ended up having a little bit of difficulty with the altitude, despite hydrating, etc (it always happens with him until he really adjusts) so we did have to sit out of most of the lessons today. But not to fear, for there is always another day or another year that we can do it again!

On the other hand, Jackson’s best friend, Rust, took off like a pro! Despite the issues with the altitude and having headaches and nausea, Jackson and I still played in the snow and had great conversation! 😉

It hurts my heart that he puts such pressure on himself. He was feeling bad for quitting until I reminded him that he should be happy that he can even breathe. And I reminded him of the toll that chemo took on his body. And as much as it hurt my heart, I had to put it in perspective for him and also remind him that a little over a year ago he couldn’t even walk. He was wheelchair bound and then in a walker and then PT for 10 months to even be strong enough to walk. So, it’s time to give ourselves a break. There is always another day or another year to try again. And we will. We always try again!

Until tomorrow when we continue our adventures!

PS - We thought it was quite hilarious that we had to travel all the way to California to get spring water from…Marianna, FL. IYKYK 🤦🏼‍♀️

We are ready for our Spring Break adventure!!!

We are ready to LIVE!!!

Are you doing anything fun for Spring Break?

So proud of my alma mater!

Florida State University raised $1,240,058.81 for UF Health Shands Children’s UF Health Shands Children's Hospital, the FSU College of Medicine, and the Children’s Children's Miracle Network Hospitals!

In case you didn’t know, the Children’s Miracle Network was amazing. They provided us tons of vouchers that we could pay for food with while in patient at the hospital. It helped us SO much since only Jackson’s meals were covered while he was inpatient.

We want to highlight the incredible efforts of our friends at Dance Marathon at FSU during their Dance Marathon last weekend! 👏

At their 30-hour event, these students unveiled $1,240,058.81 for UF Health Shands Children's Hospital, the FSU College of Medicine and Children's Miracle Network Hospitals!

We are so proud and inspired by your commitment to children's health care!

Jackson got to celebrate his 17th birthday yesterday. Woo hoo!

You may have noticed that in the last couple of years we’ve started referring to it as he “got” to celebrate his birthday. It sounds weird, doesn’t it? Well, it would sound a lot more weird to me if I never “got” to celebrate my son’s birthday again, instead having to celebrate heavenly birthdays.

It will NEVER be lost on me and Chuck that we GET to celebrate our boy’s special day when some parents aren’t able to.

He has his 17 year old check up this morning and our pediatrician says he looks great!!! We are still tweaking his meds a little for his new panic disorder, but we are getting there.

We are now halfway finished with our 6 months of profilactic antibiotic and cannot wait until June comes to be finished with it!

Poor kiddo has been sick for the past week. Our onc team thinks it’s a stomach virus. Pediatrician thinks so as well. It’s hard not to get freaked out at this point when he feels poorly, but it does seem to be lessening, so we’ll give it a little more time to pass before we discuss anything further.

Happy Spring and don’t forget to “Spring Forward” on Sunday!

Tonight is the night!!!

Lyrics for Life!!!

Don’t forget to make a bid!!!

Silent auction is open until 11:30pm EST!

https://one.bidpal.net/lyrics2024/browse/all

POLL TIME!!!

We will be attending the annual Lyrics for Life benefit concert and fundraiser this weekend in Gainesville.

Question is, since our interview will be featured during the concert, do we dress nicer or do we rock our Jackson Strong shirts for pre and post show mingling?

Tell us what you think we should wear!!

Also, be sure to head over to https://one.bidpal.net/lyrics2024/browse/all to check out the AMAZING silent auction.

Fun fact - every single penny that is donated to Lyrics for Life goes to cancer research. EVERY PENNY!!! They do not ever pay overhead costs with donations. Period. SO BID AWAY!!!

Fundraising Powered by OneCause, creator of BidPal

Wow! Good stuff here!

Air quality and residential greenness influence childhood cancer development In a new study led by the University of Minnesota's Masonic Cancer Center and the U of M Medical School, researchers found that exposure to air pollution and vegetation may impact childhood cancer development.

Update time!!!

We have finally gotten the boy regulated with his new meds! It’s been a long 3 weeks, but he’s finally doing SO MUCH better and even tackled some school work last week!

We had our monthly appointment today in Gainesville. Kiddo still looks great! His labs were perfect!

Jackson’s referral for neuropsych testing was approved and I’ll be calling this week to set up our appt over the summer to see, cognitively, what else was lost due to chemo. We’re hoping there isn’t much change, but truthfully, I’ve seen the changes already. The forgetfulness and brain fog are the two main issues that I’ve seen so far. Just wondering what else is to come and how to tackle it.

And thankfully, after the past 3 weeks, we also secured a referral to Oncology Psych. These are the people that really know. Of course, Jackson is already refusing to speak about it, but we’ve all told him that he has to work through his trauma at some point. I’m just praying that he’ll open up to someone!

And we’ve been holding this little gem of a secret all week. Only a very small select group of people were told in advance due to my own stupid, crazy anxiety. After our clinic appointment today, we met with Ken Block, the lead singer of Sister Hazel. You may remember them from the 90s and 2000s. If not, Google them! Anywho, Ken’s younger brother passed away from leukemia when he was just 17 years old. He was diagnosed at 14 years old, just like Jackson. Jeffrey’s treating physician was none other than OUR Dr. Bill! Ken started a non profit years ago called Lyrics for Life/Making Music Matter. Each year the lineup is different, but it’s a beautiful fundraising opportunity with an AMAZING silent auction! This year’s lineup is Sister Hazel with Pat Monahan from Train. ALL proceeds go to families and to research! In fact, as we were chatting, I brought up Dr. Castillo and the novel, breakthrough research he is conducting - with Jackson’s blood! Ken put two and two together and realized that the clinical trial that Lyrics for Life is funding, is Jackson’s. Then there were tears. There were also some definitely weird, witchy moments…like us not knowing that Ken’s favorite candy is gummy anything. We brought him Jackson’s FAVORITE gummy building blocks. And while he and his wife had a discussion about The Bee last night, he couldn’t have known that we’d stop and grab an assorted box of fudge for him. Southern folks bring gifts EVERYWHERE! 😂 Jackson’s off treatment date was December 13th. The same day as Ken’s brother’s birthday. Just some beautiful coincidences. 💕

So Chuck and I participated in a video recorded interview with Ken this afternoon. Jackson wasn’t having any of it. AT ALL! 😂 It will be aired at the concert on March 2nd. Silent auction pieces aren’t out yet, but they will be very soon! And remember, ALL proceeds go to help stop children’s cancer! Literally every dollar! Not even a roll of paper towels is paid for through the foundation. They take ZERO dollars for overhead, etc. Everything goes back out into the community. You’d be hard pressed to find a not for profit that doesn’t take overhead. But Lyrics for Life doesn’t!

All in all, we felt like kindred spirits. We are all in this stupid, exclusive club and it’s really not fun or cool at all. I cried ugly tears a few times. You just can’t help it when you’re talking to someone who actually gets it. I can tell our story multiple times a day, every day and people still wouldn’t get it, because they can’t. They just haven’t been there. They haven’t internalized the pain, put on a suit of armor to protect their child, prayed relentlessly for God to spare their child, to just have to trust what strangers are telling you. I’m not sure what it is, but we can recognize each other. There is always some sort of pain in our eyes. We can just recognize each other. I still wouldn’t wish it on my worst enemy, tho.

https://www.lyricsforlife.org/gville-concert-2024?fbclid=IwAR1IBB_qXci2SehtNFxJPnhlA6iNgvg3KcX6cmzaev7W_c2aJvEIwMv5ajo_aem_AUroCBJERqLPvMHp3xeW77_4jaDW_XNqvTcR8BQ31FfuRZ7A6AKznVIIlgX6Pk85CoE

Lyrics for Life 2024 Benefit Concert | Gainesville FL Rich and Carissa Bl**er are partnering with the guys from Sister Hazel for a very special night in Gainesville, FL to support the band’s Lyrics for Life pediatric cancer charity. Mar 2, 2024.

Did you know that you can send Valentine’s Day cards to kiddos at St. Jude’s?

It is absolutely F͎R͎E͎E͎ and it’s super easy because everything is O͎N͎L͎I͎N͎E͎!!!

It literally only takes a minute to put a smile on a kid’s face and trust me, the parent’s face as well!!

Bless someone else today!

Send a free Valentine's Day card to St. Jude kids Choose a sweet e-card featuring layouts inspired by patient art, and then select a pre-written message, or create your own!

This is Dr. Castillo! He is the one who trained Jackson’s t-cells to attack his cancer! Jackson has always been happy to be able to help move cancer treatment research forward! Immunotherapy is where it’s at! Nanotechnology is where it’s at!

Congratulations, to Dr. Paul Castillo for recently being selected as a National Cancer Institute Early Investigator Advancement Program Scholar! This highly competitive accomplishment allows Dr. Castillo access to network with other experts in the field, one-to-one mentorship and grantmanship guidance! 👏