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August
24
2020

August 23, 2020- Blood Drive this Tuesday and a whole lot more!

Hello Everyone

Its been a long time since we update so this post will be a look back, and a look ahead.

In addition, every time we  speak with anyone of our incredibly supportive village of family and friends we get the question "what do you need or what can I do ."  This is a harder  question than it seems  but we have an answer.

A LOOK BACK

Our timing couldn't have been better coming home in early May and spending the summer at home in Chicago.

When we came home, we were met with signs and banners and sidewalk art.  It was super fun  when many of you participated in the Welcome Home Jordan parade.  Jordan attended her outdoor social distanced 8th Grade Graduation.  She was able to see her whole class who she missed the many months we were gone.  We celebrated many birthdays:  first Johnny, then Jordan and a few days later me.  Make a Wish helped Jordan get her birthday wish of spending day at the Lincoln Park Zoo.

We keep very busy, spending 3-4 hours a day at the hospital getting infusions.  We try to spend the rest of our time enjoying the back yard and beach.  

We were able to get out of the city and go fishing last week through and amazing program called Shane's' Anglers.  

Oh and Noah grew a foot and is now tall her that his Mama.  😮

Last but certainly not least we owe a huge thank you to Cal's Angels and Bear Necessities for making Jordan's ( and the whole family) long time wish for a puppy a reality. 

 WELCOME PENELOPE JOJO GUTIERREZ. This puppy has been home for about 10 days and she already has brought us so much love and joy!!!!

Check out the Gallery  - We uploaded tons of pics.

A LOOK AHEAD

Jordan has been doing great while we have been home.  Gaining strength and resting and detoxing a bit from the high dose treatments.  We are now ready to head back to St. Louis for another high dose chemo treatment that has shown good results in getting relapse and refractory patients into remission. and ready for transplant.  We have rented a place and set everything up for when we arrive.  Exact timeline isn't final yet and Johnny and I plan to make trips back to Chicago periodically. 

 

What can I do?

Huge thanks to our Sister in Law the amazing Erica for putting together Blood Drive in Jordan's Honor

Quick...! 

From Aunt Erica: Mark your calendars for THIS TUESDAY, AUGUST 25th - we are proud to be honoring our superhero niece Jordan through the 'Stay Strong Jordan' Rogers Park Community Blood Drive. 

Our superhero niece Jordan has depended on over 150 transfusions just since May 1st.  

Donating blood is easy, safe and every 2 seconds someone needs blood. With every donation up to 3 lives can be saved!

Did you know that the number one reason as to why someone doesn’t donate blood is that They were never asked!  Currently there is an Urgent need on blood donations for our area. 

Now -- we are asking YOU! 

The first of 3 drives. More details to come about drives in Northern suburbs.

Walk-ins are welcome; however, appointments are preferred and easy to schedule HERE or call 800.786.4483 

(See details below & flyer attached)

When: Tuesday, August 25th - 11am - 4pm

Where: Rogers Park Public Library, 6907 N. Clark Street 

Please register and tell your friends to donate in Jordan's honor this Tuesday!

https://donate.illinois.versiti.org/donor/schedules/drive_schedule/5587801

Let's do this! 

🧡🧡 

Jordan's Aunt Erica & Uncle Josh

Finally, as you can imagine we certainly were expecting Medical bills and expenses however there are many other expenses that we could not have predicted. From simple things like hospital parking to travel and renting and setting up an apartment out of town, and partnering with alternative and integrative therapies for Jordan's tough to treat diagnosis. 

Jordan designed these beautiful T- Shirts and Hoodies.  Show your support an love by purchasing from our Bonfire store.

https://www.bonfire.com/im-on-jodans-team/?utm_source=mailgun&utm_medium=Initial%20template&utm_campaign=order_made_for_owner

or donate via Go Fund Me. 

https://www.gofundme.com/f/1sl800e6w0

We Love you, We miss You,

Stay in touch -Stay safe and Healthy- Wear a Mask.

Erin, Johnny, Jordan and Noah.

 

 

Show your love and support for Jordan.

Make a donation to CaringBridge to keep Jordan’s site up and running.

April
29
2020

April 28, 2020-Headed Home

 Hello Everyone, 
We hope that you are all safe and doing well.  Happy Tuesday?  Now that you all have joined us in isolation no one really knows for sure what day it is. 

What we do know is that after 98 consecutive days in the hospital (between St Judes and St Louis) we are headed home tomorrow.  

Jordan will go home on a maintenance regimen of chemo while we wait for another clinical trial to open. We have our eyes on a few CarT trails that may start in June.  In addition, we have added alternative holistic protocol from The Mederi Center in Oregon to Jordan's treatment plan.  She is strong and feeling well in general.

We will be continuing isolation at our home in Chicago and will leave only for transfusion appointments at Lurie Children's a few times a week. 

Staying connected in this time of isolation for all of us is needed and welcomed.  We love receiving texts and are often enjoying FaceTime or Zoom calls as well. 

One of the fun activities that we did while in hospital was design a T Shirt.  We know that so many of you are with us everyday in our hearts and it is this feeling of being connected to you all that inspired this design.  You can purchase them here. They are offered in many sizes and styles and colors.

https://www.bonfire.com/im-on-jodans-team/

While we are excited to come home, leaving our St. Louis Hospital family will bring many tears.  We are including a few photos of the incredible team that we will miss.

The four of us has been calling one hospital room home for about a month now so we are looking forward to some more elbow room, our own beds, Lake Michigan, seeing our cat and much more.

With love,

Erin Johnny Jordan and Noah.

March
18
2020

March 17, 2020-

Hello Everyone,

Happy St Patrick's Day. 

First and foremost we hope all our loved ones everywhere are healthy and safe.  Our life changed drastically in October and now everyone is dealing with their lives being altered.  We know it is isn't easy and some of you depending where you live may feel that the world is over reacting.  Let us take a moment to thank everyone for taking their part seriously.  It will make the world a safer place for everyone but especially for Jordan and other immuno-compromised people that were already at risk.   

On the Fuck Cancer front, the NK cell trial Jordan is doing here in St Louis isn't having the desired results so we are switching gears again. We do not have to move which is great.  We will repeat one of the drugs she received in St Jude's with a little twist with the hope of starting the process later in the week. 

In the meantime Jordan, John, Noah and I are enjoying the many "Stay Strong Jordan" pictures that are making their way too us so feel free to keep them coming. We are thankful for many things - Our family, our friends, our amazing employers who continue to allow us to work remotely and most of all the fact that the four of us are together in St. Louis during this difficult time. 

Until the next post... 

Best,

Erin, John, Jordan & Noah 

March
3
2020

March 2, 2020- Tomorrow is Day Zero

We are so excited that tomorrow is finally Day 0. 

Jordan has undergone conditioning chemo that wipes out her immune system so that she won't reject Johnny's Natural Killer cells.  Johnny spent the day getting poked and prodded and finally they sent him for a minor surgical procedure to put in a temporary central line from which he could donate his cells.  It took all day and we are so grateful that they got plenty of cells. Those cells are at the lab as we speak getting activated and ready for their mission. 

Tomorrow evening Jordan will get the infusion.  They expect that she will react by having cold like symptoms. Fever, chills and feeling under the weather for about a week.  She is will have a bone marrow biopsy on day 7. This will be the first indication of how the treatment is working.  Please pray,  hold us, send us energy, call upon our angels, guides spirits, whatever it takes. This is the one!!!!

We really like St Louis, the people, the city and the food have all been very good to us.  

February
17
2020

February 16, 2020- Road to Remission- Next Stop St. Louis

Hello From St. Louis,

It has been a while since we updated you all.  Jordan made it to about day 19 of the Immunotherapy study at St Jude's before it was determined that this drug was not effective.  At that point our team identified and recommended another clinical trail that was being offered at St. Louis Children's Hospital.    So last Thursday Jordan was transferred, and we arrived in St Louis via medical  transport. 

Johnny and Noah met us here and we have been acclimating ourselves.  This our 3rd stop on the Children's Hospital Tour of America.  Again, we feel blessed and supported by our Family who has helped make this transition smooth, by our Friends who continually reach out to send love and support.  At the same we wouldn't be telling the whole story if we didn't say that at the same time being away from home for so long is hard, and that staying positive is hard.  But there is a lot to be hopeful about. 

This trial is called "NK Cell Infusion" trial.  It is like a mini transplant.  Right now we are at day negative 16 counting down to day 0. On day 0 Jordan will receive an infusion of "Natural Killer" cells donated by Johnny.  We all have these NK cells in our blood and they travel around looking for virus and such to kill.  Johnny will donate his cells. Then the doctors will take his cells and "activate" them and give them to Jordan.  We like to think that on day 0 Jordan will be getting a dose of pissed off Dominican cancer Killing cells from the Bronx that will help get the job done. This has got to be the one that one that works.  3rd times a charm and all.   

This is an inpatient trial. We are settled into Room 9113 here and we are comfortable and getting to know our way around the hospital and area.  We like St Louis a lot.  Everyone at the hospital has been great.  We have met some of the other families  on our floor that have been great about sharing their stories with us. 

Thanks again to everyone for your continued support. Below is our new contact information for the time being. 

Best,

Erin, Johnny, Jordan and Noah

We can receive mail at:

St Louis Children's Hospital
Patient Jordan Gutierrez- Room 9113
One Children's Place
St Louis, MO 63110

January
19
2020

January 19, 2020-Round 4 - By John

Hello from Memphis

We did not get the results we were hoping for from Round 3.  Our goal is remission and while round 3 brought Jordans Leukemia down from 65% to 10%, remission remains our goal.  While we were disappointed we also feel like we are in the right place at the right time. 

A new trial opened on January 6th.  While it will eventually open at 20 locations across the US, it opened at St Judes first.  They will enroll only 6 patients nationwide and Jordan is scheduled to be the first patient enrolled. She will officially enroll on Tuesday the 21st and start treatment on Wednesday. 
This new drug is an immunotherapy drug that has been used in clinical trials with adults with AML. Jordan will be the first pediatric patient in the world to receive this drug.  It works differently than Chemotherapy.  This drug uses the bodies own immune system to kill the Leukemia. This trial will be 28 days in patient program. 

Noah and I returned from Chicago yesterday so the whole family gets to spend some quality time together for Jordan is admitted on Tuesday. The weather yesterday was beautiful and we visited Shelby Farms. We went for a beautiful walk and ended up staying for dinner.  Shelby Farms is a beautiful public nature park with trails and fishing boating zip lines playgrounds and a great restaurant on the lake. The kids both tried Oysters for the first time and loved them.  Jordan had broiled oysters with garlic and Parmesan and Noah tried broiled and raw.

We are hopeful that this new trial will get her to remission... More to come soon. 

Best,

John, Erin, Jordan and Noah! 

January
8
2020

January 7, 2020- Day 28

Happy New Year Everyone!

I realize it has been many weeks since we posted. Today is day 28/28, the final day of the clinical trial.

We are so grateful for St Judes.  While being away from home is harder than expected there have been so many things that have helped us along the way. 

Since we arrived here, St Judes has offered tremendous support both in and out of the hospital.  
Originally we stayed at the Tri Delta House- an on campus hotel.  We were very comfortable there.  Since our treatment plan is expected to be a long one they moved us to the Target House. We now have a 2 bedroom apartment.  We have done our best to make this feel like our "home base" in Memphis. 

We had a nice holiday celebrating Hannukah and Christmas.  We received ornaments and holiday gifts from many of you.  This helped to  make us feel surrounded by our loved ones over the holiday.  These ornaments are now heirlooms.  We have carefully packed them all up and I can imagine us unpacking them all next year back in Chicago fully recovered and remembering the love the support that we have received for years to come.   We were lucky to have some visitors over the holidays.  Jammy, Uncle Josh, Auntie Eri, Charlie and Sammy visited over Christmas.  They rented a beautiful Airbnb and had a great time hanging out together.  The house rented was in the Victorian District.  The homes in the photos are NOT where we stayed but this was our view, these homes were across the street.  

Johnny's longtime friend Edwin and his family drove up from Houston.  Jordan was in patient while they were here but their love and support was felt deeply and Johnny got to spend some quality time with them.  

We received countless texts, emails, calls, videos and packages.  Each one was a bright spot in our day, especially for Jordan. She loves getting texts and videos.

On a beautiful day in Memphis when Jordan was feeling well we were able to do to the Zoo.  The Memphis Zoo is AMAZING.  We had so much fun and the highlight was their pandas.  We also checked out famous Beale Street. 


St Judes has lots of things going on.  Since most of kids here can't go to the movies they get access to movies that are in theaters. We saw part of the new Frozen movie that they stream at their own special theater room. Now they are playing the new Star Wars and we hope to see that as well. 

The Target house has an art room and music room.  We all did some artwork together before Noah left.  

New Year's eve was a quiet night with the four of us and we were so happy we could be together.  

Jordan has a bone marrow biopsy tomorrow to determine the official results of this clinical trial.  Her numbers have been consistently low and we are hopeful that this trial has readied her for transplant.  We will update you all again as soon as we know the plan for the next steps her in her recovery plan. 

Before bed each night we list the ways we are lucky and what we are grateful for. The list is never exactly the same and it is never short.  We owe much of that to you.  Thank you so your continued love and support. 

We wish everyone a happy and healthy New Year.  We are thrilled that 2020 is here and we know that it will bring us all many blessings.

Erin John Jordan and Noah.

December
19
2019

December 18, 2019- St. Jude

Hello Everyone,

Today is day 8 of a 28 day clinical trial.  Just over a week ago we hopped in the car and drove Jordan to Memphis to enroll in a clinical trial at St. Jude.  The genetic composition of her Leukemia makes it a bit harder to treat and traditional Chemo alone will not get her to remission and ready for a bone marrow transplant. Transplant will always be the final curative step in her treatment plan. 

This trial at St Jude's add a new drug called Venetoclax to her chemo cocktail.  This essentially primes her Leukemia cells to be more responsive to the Chemo.  This drug has been FDA approved for adults with AML and has shown very good results.  This trail is part of the process in getting Venetoclax approved for treatment in children.  

St Judes is an amzaing place and the people are wonderful.  We have gotten a few opportunities to explore Memphis.  The food, the architecture and Beale Street are only few of the cool things to see. 

It is still hard to be away from home and separated from Noah who will be joining us soon for winter break.  We look forward to celebrating the holiday together. 

John and I remain forever grateful for everyone's support.  We will keep everyone updated, or as they say in Memphis, "Keep Y'all Updated."

Erin and John