Bea Flor
UPDATE...
June 11, 2021
I had to do the hardest thing in my life to put my little girl to rest... it's one of the most hardest decision in my life that I ever had to do... she went thru a lot and she survived 2 extra amazing years with us and I'm glad god gave that to me and now she's back with her creator.
REST IN PARADISE MY BEA FLOR AND ITS NOT GOOD BYES ITS SEE YOU AGAIN LATER! We love you so much!
On September 12, 2019 we got the worst news that broke all our hearts Bea Flor was diagnosed at only 4 with acute lymphoblastic leukemia. She was rushed from her primary care doctor to a specialist that exact day. A couple days later she was diagnosed with a rare condition philadelphia chromosome positive and that broke us even more. Days turned into weeks but her body responded to treatment so well she was finally able to go home right before her 5th birthday in 2019, which was an ultimate blessing. BEST NEWS WE COULD RECEIVE ALL MONTH LONG. Months went by and her body responded to each treatment and was another blessing... we went thru a year and 3 months of INTENSE INTENSE CHEMO that killed her immune system so bad that each month she was in the hospital with infection right after ever cycle of chemo. But she went thru it like a champ as much as it hurt us to see her go thru fazes of not being able to eat, throwing up, rashes, fevers, constipation, weak bones, and so much more of side effects but she managed to get thru it. SHE IS THE STRONGEST LITTLE GIRL I KNOW BECAUSE i know I wouldn't be able to handle what she handled... October 2020 she was finally good enough she was put on maintenance which is lower dose of chemo and we we're sooooo happy. She was finally going to be in a stage were we didn't have to worry as much. On DECEMBER 1, 2020 we went for our regular LP like any other LP and doctors found a cancer cell that came back and that put her into a relapse which we have dreaded since the day she was diagnosed... like they say there is always a risk it can come back and we knew that it could happen but didn't know it would happen already. This broke us even harder. She was doing so well and bam it just hit her and back again we are in the hospital for a whole month of very hard chemo that we spent all of December in the hospital away from our other kids and her away from her siblings. It was such a horrible month for her... but she made it this far so why not fight a little bit longer. Our options now were to put her thru bone marrow transplant. We got all our 5 kids tested and only 1 was a match (a blessing from up above). We are now in process of getting her ready for transplant... she has one more cycle of chemo and then she will be going to transplant in February 2021. Not sure what date yet until we get final results of her next Bone marrow testing which will happen the end of January 2021 or beginning of February 2021. We hope to get good results and get her ready for transplant. One thing is we will be transferred to another hospital which we dread since we already made a family at the one we have and Bea has developed very bad anxiety around a lot of people, Doctors, nurses, anyone period so that is going to be difficult on her but I know she can do this...
During our consultation with the bone marrow transplant team we met amazing doctors and an amazing team so far. It gives us a lot of hope that after this she will hopefully not relapse again and we can get back to normal again. Prayers are always our number one. We were talking to the doctor and the first 100 days are the most crucial days of her being there. Even if she is released before the 100 days from the hospital we still need to stay close by because anything can happen and we have to be close to make sure we can rush her back if there is any side effects or any complications. WHICH WE PRAY TO GOD THIS WILL NOT HAPPEN. But like all doctors say there is always a risk and that's a risk we have to accept.
In this process doctors and social workers have given us options to stay close by in one of the accommodated places to stay at but of course it still comes with a price. Like they say nothing in life is completely free. But we are willing to pay the price we have to pay to stay close to her and close to the hospital and make sure she is well taken care of. So for the 100 days or LESS which we are hoping less we will be staying at a near hotel and me and dad will be taking shifts being with her. Being Bea dad works and hasn't been there for that long he is not covered to take any leave to being paid and being with her. But for that long we will defiantly need to take turns in being with her and being with our other 5 children that will also be staying with us as well. We have to make it work as they say so that we are at least all together some what. There are days were I will need to be with the other children and he stay with Bea and him with the other kids and me with Bea and we have to do it close by. It's gonna be a long 100 days but I know we will all get thru it together.
We don't usually do this and we feel ashamed for doing this let alone even have to get to this point but we have no other choice... even if Bea dad stays working we won't be able to afford staying in hotels and food to survive those days. We were hoping the stimulus check would of been our answer to our prayers but unfortunately we were not blessed to receive that money. So now everything that we do the next 2-4 months will be coming out of our pockets. So if you are reading this. THANK YOU FOR TAKING THE TIME TO READ THIS! And second I know times are tough for everyone and we understand if you can not help but even a share and a prayer will be a blessing to us.
If you choose not to send it thru here. We also have a Venmo account for Bea as well. @team_bea_flor
Thank you so much! From the Argueta Family!
UPDATE UPDATE UPDATE....05/17/2021
February 2021 we started process of bone marrow transplant and on the first week of March we started our conditioning. Well that got delayed because dental wanted work done before she was able to continue. BUT before that all happened after she got her port changed to double lumins she ended up getting sick with rhino virus (the common cold) so that delayed everything even more...
FINALLY AFTER GETTING BETTER AFTER RHINO AND AFTER DENTAL WORK WE WERE FINALLY GOING TO START AGAIN!
MARCH 29, 2021 she was finally admitted and we started conditioning. We started radiation March 20, 2021 that followed by chemo to wipe our her cells to get it ready for her brothers cells.
APRIL 7, 2021 BEAS NEW REBIRTH BIRTHDAY TRANSPLANT DAY! YAYYYYY!
Everything was going soooo good as we "THOUGHT" and not even 2 weeks she got VOD. ( veno-occlusive disease) which causes the liver to back up which then caused the kidneys to back up and caused so much fluid that it started going to the lungs... with that all being said she was admitted to ICU.. she need to get a medication to unclog the liver which would only be possible if we removed the fluid that has caused the kidneys to back up... so low dialysis for the kidneys. While we were doing dialysis she was having trouble with heart rates that cause her to get incubated (breathing tube in her mouth) a week after she was escabated. After that she stayed in the ICU for about 2 weeks. And back on the BMT floor. NOT EVEN A WEEK LATER SHE DEVELOPED pneumonia / fungal infection in her lungs that caused her breathing to go wayyyy down and another visit to ICU again.. another incubation and til this day May 25, 2021 she is still incubated and they are still trying to figure out what is causing her infection and her breathing to do this.
Hopefully we can get some answers and go back to BMT and get her out of the hospital. She has gone thru a lot already and needs a break..
GOD PLEASE HELP HER!
Thank you!
