Stupid fever

So many of you have reached out asking for an update on Jackson. 

So here it goes... 

Friday he had his surgery and did awesome! He was sore from the line being removed but was so brave. 

Saturday morning around 3:30am he spiked a fever of 102.7 after several phone calls to Riley’s, they decided he needed to go to the ER @  SBL to have lab work and blood cultures done. In the mean time we learned his ANC had dropped to 500 right before the surgery that raises some red flags.  Which warranted an ER visit! Man, was that hard to do. Taking him back knowing he was going to have to get blood taken and get a IV after just having his line removed. It crushed my heart. 

They ran labs and gave him IV Antibotics. Labs came back negative for any bacterial infections. So we chalked it up to a viral bug. He continued a fever for a day along with some vomitting. He was feeling much better on Monday!  He goes back for more labs and a check up on October 11th! 

Today he got to start his homebound schooling and we are so excited that Mindy Beurskens gets to be the one doing it. I can’t describe what an amazing feeling it is to have someone you know and trust to do this. He will also start his speech and OT at home as well. So we are excited to get that going as well. 

Otherwise he is getting stronger each day. He loves being outside playing hide and seek and going to the car wash! 

Oh and he got a new puppy yesterday! 

Thank you for loving him through each phase, for checking in on him and for praying for him daily! 

CFD

Huge Thanks to the Charleston Fire Department for making Jackson’s day! He got to climb around the fire trucks and a ambulance and check them all out! Learned about all their tools, lights, and sirens. His favorite part was spraying the hose!

We are so blessed to have such amazing friends and to live in a community like this one! These guys were so gentle, patient and kind with Jackson.

#Jacksonthefirefighter #CharlestonFireDepartment

JFL and Wilber Cares

Thank you #WilberCares for the awesome Posters and for selling T-shirt’s to raise money for Jackson!
We appreciate it so much!
Mark Myerscough thanks for making the trip, so glad we got to visit with you.

Jackson got to cheer the Trojans on at the JFL football game today and had some very special visitors there to see him as well! #CousinLove

His request for the weekend was Camping and Boating. So guess what we are doing?!?!

One week out

First check up @Rileys since ending his treatment was a success. Jackson was so brave almost like he had done this a time or two 🤪
Things look good, ANC is at 300 and all other numbers are stable. He still has his central line in. He won’t get that removed for a few more weeks.  His anc has to be at 1500 before they will remove it.

So until we get that removed we are in a limbo state and feeling like it’s not quite over just yet. With his ANC so low we are keeping him contained as much as possible to ensure he doesn’t get sick. We can’t wait to celebrate the day when he is DONE with this all and we can work on putting this behind us and move on.  We are feeling stuck right now, but glad we are feeling that way in the comfort of our home and not a hospital room.

Since we have been home he hasn’t done much. He is loving hanging out with his Brother and Sister and of course was over the moon excited when his buddy Vincent stopped by to see him.  Uncle Jeff Ianello sent the boys some fun Remote control cars too.

#JacksonStrong #cancerFree #Remission #brotherandsisterlove

Cancer Free

9-6-19

He did it.... he is a survivor!
 He is #CancerFree and it feels so good to tell him that his bones and blood are not sick anymore. To tell him we no longer have to spends months in the hospital treating his cancer. Seeing him play with his toys, go all over the house with no restrictions is such an awesome feeling.

5 + months ago I couldn’t say the word Cancer out loud. The thought of the words Leukemia or Cancer would instantly put a lump in my throat, I would choke up and my eyes would fill with tears. How is it possible that Jackson had such an awful disease.

5 + months ago this day felt like a life time away. It felt so out of reach. It felt so so far away and I wasn’t sure how we were going to get here. I know now the only way we had the physical strength to power through each day is  from the mighty power of the lord, from the thousands of prayer warriors that had unshakebale faith and strength for us when we didn’t have the strength to even pray. I recall in the first month night after night with no sleep and very little food because I couldn’t bare to do either, not sure how I functioned. The truth is that being alone with your thoughts as you close your eyes was scary. My thoughts would wonder to places I wasn’t ready to let it.

Being home with the whole family brings such a calm feeling, a weight lifted, I feel like I can let my guard down a bit and relax, knowing we are all here together. It does bring on a different level anxiousness. As we are in limbo....  What’s next, how do we move on, how do I not freak out daily about him relapsing. I will continue to take it one day at a time, and we will get through this as well.

Yesterday was so bittersweet. Of course we are so thankful to be Cancer free and to never have to go through treatment ever again. But, Riley became our home, a safe place for Jackson (and us) they became friends and felt like family. I met amazing mamas. I’m going to miss standing outside of each other’s sick kids rooms visiting, sharing stories, laughing, crying, giving a hugs when it was needed.
Leaving today I couldnt help but cry for those that are still there. Still fighting their battle or just coming in for the beginning of their battle. No one should ever have to go through this. Watching you baby suffer is a new level of pain that is for sure.

The next several weeks will be busy with follow up appointments, surgery for the removal of his central line. After he is cleared he will just have to go back monthly for follow up labs to ensure he isn’t relapsing.

Friends and family with all of our hearts we thank you for every single act of kindness no matter how big or small. We appreciated every single thing that was done for us or our children through this entire journey! We know that your love and support made this journey a little easier to take on. Knowing we had so many people loving, praying, and cheering Jackson on. We will never be able to express our gratitude fully. But please know we felt, read, opened, and used all of the things sent our way! You are all such a blessing to our family and we hope we are able to be a blessing to yours as well.

We will keep you updated on his upcoming progress and of course His Hair growing back.

Much love!

Rosie Pagliai Lozano thank you for the welcome home goodies.

#CancerFree #Sayitalittlelouder #CANCERFREE #Jacksonstrong

It’s happening!

Update: Doctors rounded and are sending Jackson home TODAY! I am in shock and so emotional and I just can’t even describe it.
They are going to give him another platlette transfusion today to beef him up a bit to get through the weekend. He will have in home Nursing do Labs on Monday and he is due back to Riley next Friday to do more labs and check in with his team. Wow! We are here friends!

We have an ANC of 55 it’s moving slowly, but the important thing is it’s moving!  He received platlettes again yesterday.

Jackson also got some awesome Gifts from Chelsea Wilkerson family. Thank you so much!

He also received a package full of toys from Kendra’s Call for Komfort foundation. So all those things kept him busy for a bit. I think it is so amazing all the wonderful foundations that provide gifts for the sick kids. I hope one day in the future we can do something like that as well to give back. As much as he doesn’t need another thing, the joy of watching him get excited as he opens it is worth it.

We are so close .

We are continuing to Pray he is shielded from any set backs. We know that anything can change over night. We are praying his numbers come back strong and cancer free, we pray that his bone pain is totally gone. We pray he is happier and healthier than ever as we walk out these doors.

Day #31  #FinalRound #Kickincancersbutt #leukemiaAML #letsdothis #comeonbuddy

Cookies!

Still nothing exciting to update. We are still waiting on Jacksons Bone Marrow to wake up and start working.

ANC still at Zero. With no immunity to help heal up the mucositis he is still battling some pain. Keeping him comfortable, and infection free is the goal as we wait. He is at 2 weeks of being at zero. So we are trying to keep him as isolated as possible and avoiding the play rooms.

In the mean time Grandma Carol Brought a gift for the staff.  Kathy Winans Hildebrandt made the  cutest Cookies for Jackson to say Thank you to his medical team. He enjoys getting out of the room to hand deliver the cookies in the small windows that he feels okay (after a dose of morphine 🤪) and even let me take a few pictures of him doing so.

We have had the pleasure of meeting so many wonderful people. The nursing staff is wonderful and are so good to him! 🧡

So as we wait, please pray with us that he remains infection free, and his counts recover stronger and healthier than ever before.

#JacksonStrong #CancerSucks #Weseeavictory #winning #superherostrong #oursuperhero