Nicole Kristian's Salon

We can not thank you enough for all the love and prayers you have poured over our family as we walk through the hardest season of our lives. Josie is making amazing progress, but her road of recovery is still a long with regular appointments in Houston every 2 weeks. At todays appointment, we got the green light to start the process of weaning her off a medication she’s been on for 7 months, which has kept her immune system suppressed while her new bone marrow settles into its new home. As we slowly wake up her immune system, we are praying her body continues to accept the new cells. In February 2025, we will get to start the process of revaccinating all her childhood vaccines that were wiped from her system while preparing her body for her bone marrow transplant.

We are so blessed to have the support of One Bite at a Time Ministries, who have set up a fundraising campaign for Josie. Your prayers and donations mean the world to us as we manage ongoing medical and travel expenses.

If you would like to support, you can text “Josie” to 71777 to donate, or visit the campaign at https://fundraise.givesmart.com/vf/Josie. Thank you for the continual support as we continue to work towards getting Josie’s body healed!

(3 of 3) Her CMV reactivated Tuesday. They weren’t sure what medication the wanted to treat it with. They have 2 options, foscarnet or valcyte. Foscarnet will be hard on her already delicate kidneys and valcyte will lower her counts that are already in a downward trend. They wanted to take the day and discuss it with the team before making their decision. This morning they called with their decision for her to start valcyte. Also with today’s news, a test result came back from Tuesdays labs that she is deficient in erythropoietin, which is why her hemoglobin isn’t rising like it should. She will start weekly darbepoetin injections to help boost her hemoglobin numbers.
Her renal specialist also reached out today. Still not seeing any change with upping her blood pressure medication, he decided to up it another 20% and if that still doesn’t make a change we will add a low dose blood pressure patch.
Keep all the prayers coming!! Pray her body can knock out this CMV fast and that her blood pressure will come down. Pray her kidneys can take this new medication well and that her numbers don’t dip down too low.

(2 of3) Josies labs have been looking so positive! April 11th was the first time seeing her numbers go down and they have been in a downward trend for the past 3 weeks. She lost all her energy and her appetite for about 2 weeks and would run low grade fevers only at night. Her PA thinks she may have had somnolence syndrome, a late reaction to radiation that causes fatigue. She is slowly getting her energy and appetite back!! I have been trying to find all the vacant parks for us to play at even if it’s only for 5 min!!
Josie had CMV in the hospital. They had to treat with a medication called foscarnet for almost 2 months. That medication has been really hard on her kidneys. And with her kidneys taking a hit, it has also caused her blood pressure to rise. Her BMT doctors have increased her blood pressure medication to the max dosage for her age and weight still seeing no change in her blood pressure. They referred Josie over to a renal specialist. We met with him for the first time April 12th. He was so thorough. He spent so much time explained everything so well! Even receiving some of the news we got, I walked away feeling at peace knowing we are in such great hands and they are not going to let anything slip through their fingers. Josie’s kidneys are functioning around 50% right now. He wanted to up Josie’s blood pressure medication 20% higher than her max dose so if that will make any changes.
Fast forward to the past couple of weeks, her blood pressure has remained high and increases at night. They are running test to rule out TMA, which I don’t really have a full understanding what it is but it involves blood clots in the small arteries and capillaries. So far, all the test are coming back good. The more specific test for it had to be sent off to Cincinnati and we should have those results hopefully this week.

(1 of 2) Update: Day +84 Post Transplant

It’s been 84 days since Josie’s transplant. It’s getting harder and harder being away from home! I’m ready to have Zoe and Slate in my arms again. I’m ready for all 5 of us to be together again under one roof! Tonight will be the 115th night I have slept away from them. Almost 1/3 of the year away from my babies.
Lots has happened since my last update on Jos. Coley and I made the decision it was time for him to go home and be with Zoe and Slate. He flew home the morning of April 11th and surprised them both by picking them up from school!!! He videoed both pick ups and Zoe’s reaction had me in tears! They are both soooo so happy to have him home!!!
While Coley was flying home, Josie and I went to our first appointment by ourselves. They drew her labs, she received an antibiotic transfusion she gets every 28 days and they changed Josie’s dressing for me!
*side note: I can not say enough amazing things about the entire BMT staff at Texas Children’s!! They are ALL AMAZING!! I look forward to clinic days just to see all these amazing people! Being outpatient, home health is in charge of changing Josie’s central line dressing. She was doing good getting it changed in the hospital and when home health took over she became very agitated making it hard to have her stay still and keep everything sterile. What should take 20 min was taking almost 2 hours. Now with Coley back home, I was stressed about not having enough hands and it going sideways fast. The clinic has been so understanding with my fears and is allowing us to come up and let them change it for us!!

(4 of 4) But we are just in awe on how good Josie is doing! Her little body is working overtime! All her counts are looking amazing! It felt like an eternity of seeing all her numbers low and now we have some of her numbers all the way back up in the normal range and the rest heading that direction!!! We have been going to clinic 3 times a week since getting out of the hospital and this week they have changed us going twice a week!!!
Over the past couple of months, Josie’s kidney levels have consistently been elevated. We know that this is likely due to a medication she has had to remain on. And we have been struggling bringing down her blood pressure despite her being on the maximum dosage of blood pressure medication. Friday, we will meet with the renal specialist who will take a closer look at her kidneys and help manage her blood pressure.
We’re still on a long journey, but it feels like we’re making incredible progress! Josie has now fully, 100% transitioned to her donor’s cells, a huge milestone. Around our 100 day mark, there will be a test to assess her K, B, and T cell levels, a crucial components of the immune system. Her body had to undergo a complete depletion of her entire immune system to make room for the new bone marrow. It is like hitting a restart button. In 9-12 months (November-February), we’ll begin the process of readministering her childhood vaccines. Until then, she won’t be cleared for school, and we’re awaiting clarity on what activities we can engage in during this time.
Thank you to everyone who has supported us along this journey. Your love and encouragement has meant the world to us. Here’s to celebrating every small victory!!! We are seeing the bright road ahead!!!

(3 of 4)

Trying to get the oral medication down her is a long process. And the worst part is, none of these medications can be flavored! The most important medication that she is on, and will have to be 18 months, tastes like gasoline. It has been a trial and error process figuring out different ways for her to take it and not throw up the minute it hits her stomach.
And then you add on the added stress of the company that provides all the medical supplies. To get the IV medications delivered on time with all the supplies that we need is a task in itself!
And then we have the stress of having home health come in and change Josie’s central line dressing every week. Changing the dressing is a long process and it has to remain very sterile because once they take on the dressing off, it’s a direct path to her bloodstream and the risk of a very serious infection is extremely high. Everyone has to wear masks the whole time and there are critical steps you have to take during the dressing change. We have not had a smooth dressing change since being out! It is easily my most unfavorite day of the whole week!!!!!

(2 of 4) This journey has tested every single part of us and
I know it sounds so crazy, but I miss being in the hospital! I miss having that feeling of security! I miss having all the nurses and doctors having eyes on her multiple times a day! I miss having all her medications administer through IV! I miss having the activities for the kiddos!! I miss Mrs. Paige and the play room! I miss having people to talk to!! I miss all the nurses, every single one of them were amazing! I appreciated them so much while we were in the hospital, but now I appreciate them on a whole new level!!!!!
The transition getting out of the hospital has not been easy! It has been mentally, emotionally, and physically exhausting! We were not fully prepared on what we were going to have to be in charge of when we left the hospital. Josie went home with 2 IVs. 6 different oral medications and 2 steroid creams. For one of the IVs, we are having to add 3 vials of medication to the IV bag, spike the IV bag, run the tubing to the pump and prime the line with the IV fluid all before having to hook it up to her! The other IV looks like a ball! You hook it up to her and unclamp the line and when it’s done, the ball is deflated!

(1 of 4) We have made it to day +62… give or take 38 more days left in Houston. To say we are so incredibly home sick is an understatement! We have been in Houston for 94 nights!! 94 in this one stay alone! 109 nights total in Houston… 109 nights away from Zoe and Slate. (Not including all the nights away in Lubbock) Hard doesn’t even touch it. This have impacted us all and we are so proud of their bravery and strength! They are little warriors as well! I just remember how slow time went when we were kids and all I can think about is how long this feels to them. And I don’t even know how to begin to thank my parents!!! They didn’t skip a beat stepping into our shoes! They have done such an amazing job keeping them busy and happy and getting them to and from school and all their activities! They have literally done everything!!!!!!!

(2 of 2) They also keep a close eye on their weight to make sure they don’t exceed the weight they came in with. The past couple of weeks, she started retaining fluids which can be hard on all her other organs. They had to put her on 2 strong diuretics to help get that fluid off. Those medications also weren’t very friendly to her kidneys. Today when the doctors did their rounds, they said her weight was stable and they were able to take her off of those!! 🎉🎉
Her blood pressure has also been on the higher side. After watching it for several days to see if it would come down on its own, they ended up having to give her blood pressure meds.
Some of these medications she has to be on can not be administered through IV. Blood pressure medication being one of them. It is the biggest task to get any of them down her! Most days we end the day with a pile of full syringes sitting on the counter that she refuses to take! Today, she was able to get 3 down!! Huge victory!! I’m praying we are rounding a corner!!!

Josie’s 4th birthday is this Saturday!!!!!!!! If anyone wants to send her a birthday card or a picture that your kiddos drew, I know she would love to open them up and be able to tape them to our walls!!
Send me a message and I’ll get you an address that you can send it to!!

Day +28 March 6th 2024
A quick Josie update!
She keeps amazing us with her strength and energy and her constant love for life! She doesn’t let this horseshoe floor we are confined to get her down! Her imagination is top notch!!! Everyday we are out in the hallway riding her tricycle finding new adventures to go on! Today we went camping and stopped and saw all the flowers, caught a few butterflies and saw all the pretty scenery! We go to Disney World often and ride the Haunted Mansion! We have gone to a Taylor Swift concert and watched fireworks! She has literally made this hospital stay into a magical fun place!
We are still on a bit of a bumpy road trying to find the balance of all these medications. They are having to treat pretty aggressively a number that remains high. In return, it’s making her kidneys unhappy, it’s making her have zero appetite and having a hard time keeping any fluids she drinks down. Tomorrow she will get her 4th infusion that goes for 6 1/2 hours that will assist the medicication she is on to lower that number.
During her last infusion, she started randomly started getting these rashes. They first started to appear on her face. They would appear and leave within seconds. They would come and go about every 30 min. That night, she broke out in a head to toe rash. The doctor came in and had the nurse shut off all medication and start a high dose of Benadryl. They had her set up to all the monitors watching her vitals closely. Her breathing ended up dropping down. At 2:30 that morning, they came in and did an EKG and then later that morning, she had to get an echo done. Everything ended up coming back just fine.

(2 of 2) She has all the nurses in this hallway laughing and loving her so much! She has found where they stash all the play ride on cars and has now tuned the hallway into her own personal race track and challenges every nurse to a race! These nurses are amazing! We absolutely loved them!! She lights up when our nurses come in! They will sit and play Barbie’s with her, color with her and even play hide and go seek with her!
Our next huge milestone now is engraftment! This is where her new bone marrow begins to function! So prayers for that to start happening!
Huge prayers for everyone on this floor! We have made some very special friends in this journey that I pray we keep for a lifetime! We have heard stories that have pulled hard at our heartstrings! We have watched the bravery of these young kiddos shine so bright!! It’s truly amazing how strong these kids are! We have learned so much from each and everyone one of them! They all amazing!!!!

(1 of 2) Josie update:
We are on day +13! Wow! Crazy to think we are almost 2 weeks post transplant!
Since transplant, everything has gone really well!!! We have had lots of parties in the hallways…. a Super Bowl party, Mardi Gras party and a Valentine’s Day party!!! It’s all been sponsored by His Grace Foundation! I’ll make another post on that foundation soon because they are just absolutely amazing!!!!!!!!
We hit another huge milestone Sunday the 18th! Josie had her last chemo treatment!
Her hair started shedding around that time as well. We have read the most amazing book on repeat called Princess Lily and the Hair Fairy! The hair fairy tells Lily that she loses her hair because her body is fighting hard to get better and that her hair is powerful because of it! With her hair, the hair fairies come and take it and grind it up and make fairy dust that helps the flowers grow, the lakes to shine and the stars to sparkle!! Josie has been so excited about the hair fairy coming to see her! It’s the oddest feeling watching Josie run her hands through her hair and hand me handful of her hair so cheerfully saying “here mommy, here’s more hair for the hair fairies” I’m dying inside and fighting back tears as I take it from her. Her strength and bravery and her outlook of life is beyond anything we have ever seen! She is wise beyond her years! She has so much understanding on of what’s going on and tackles every obstacle with a smile! She makes our lives so much better! She is so sweet and so kind! When she was waking up sick, instead of worrying about herself in that moment, she turns to us and says “I hope Zoe and Slate aren’t up right now sick like me!” What 3 year old shows that much empathy?!?!

(4 of 4) It’s so fascinating to me that Josie has a piece of this young man in her that’s able to save her life and we have no idea who he is but yet we love him so much! I feel like we gained a son yesterday! We did find out last night that he does live in the states! In one year, he gets to make the choice if he would like to have contact with us and then we have the chance to meet!!! I pray he does because I have this whole picture of the future painted in my head and he’s part of some many memories of it!!
Josie now has 2 sets of DNA now! Hers and her donors. She will now take on his blood type. In the next few days her A+ blood will turn to O+! If she ever decided later in life to do a genealogy testing, it will also pull up her donors side!!! He is so special to us! And we can’t wait to add him and his family to our family!!!! We are here anxiety awaking to the moment we get to hug his neck and thank him for the greatest gift we could ever have!!!!!!!

(3 of 4) Josie said she wanted King Burger (Burger King) so we doordashed it in! While we were eating, her bone marrow arrived!!!!!!! It was so emotional and so exciting and nerve wracking all wrapped into one!
This was the day we have been wanting and praying to get here to for so long! We were able to FaceTime my mom and dad, Zoe and Slate, my sister and brother in law and my nephew! Coley and I got to hold Josie’s new bone marrow cells in our hands and we all said a beautiful prayer over them! It’s amazing how something so small is so powerful and holds the key to getting Josie better!
It’s so remarkable how the whole transplant is performed! It’s a transfusion into Josie just as she has been getting blood and platelet transfusions! She was pre medicated to fall asleep and then we had 2 nurses in our room for the whole duration. It took about an hour in a half to transfuse and then 2 hours of closely being watched. The transplant starts pretty close to 9 on the dot and she was fully done getting the cells at 10:43! The cells are so big that they aren’t able to get pushed through the pump like normal fluids or transfusions so the nurse does all of that with the help of gravity pulling the cells down. The nurses had to closely monitor the speed of the cells and slow down the drip and speed it up at times. They had to massage the bag to get the bigger cells to flow down and massage the line connected to Josie. There was so much calculations and timers to make sure everything was flowing perfectly! So much goes into it! I feel like we got to witness a miracle! Josie did so great through it! They told us, her blood pressure can spike when they give the cells! Hers stayed level the whole time and then raised just a bit towards the end!!! Truly amazing!!!!!!!

(2 of 4) Josie had a big day on her special day!! Everything was timed so perfectly and went like clock work!!!She woke up not feeling great so they gave her a dose of Benadryl that helped her sleep through the tummy ache! She woke up feeling so much better! Right around the time she woke up Paige, the activity coordinator, came in with super cool crowns and all the jewel stickers!! She helped Josie make a beautiful crown for her IV pole that Zoe helped name Princess Ivy! They also made 3 more for all of us so we can have matching crowns!! After she left, we pulled out the Barbie’s and played till it was time for her spa day with her red light therapy so naturally, after her spa day she had to do her nails and makeup!!! It worked out so perfectly, once her nails were done drying, bingo was starting on the tv being live streamed for all the kids to play!! After bingo, it was time for the playroom to open! So we went and played with Mrs. Paige in the play room till 4!!! We came back in the room for her bath and got all cozy in her pjs!! Coley and Josie relaxed for a bit while I went to join the parade on our new sweet friend Liv getting discharged!! I ran into Josie’s PA on the way back to our room so she came in and joined in on Josie’s rebirthday celebration, celebrating Josie’s new beginning!!!

(1 of 4) I’m finally finding a little bit of time to talk about yesterday!
Yesterday was absolutely magical! Knowing that Josie was receiving the most precious, priceless gift of all time yesterday was a surreal feeling. We had an overwhelming sense of gratitude all day! Knowing someone was selfless enough to donate a part of themself to give our girl renewed health is a feeling that is indescribable!
We were told yesterday morning that Transplant would happen around 8 or 9 last night and that her cells would be over at the building across the street around 6:30! We can see that building from our hospital room’s window, so everytime I looked out that window I said a prayer praying for our donor, praying that he was recovering well with little no discomfort, praying for for his cells, praying that they were spun and clean and and bagged with the most power bone marrow cells and that they find the perfect home in Josie’s body!

Day -2
We really appreciate everyone cheering on our Josie girl!!! Thank you all for all the prayers! It’s working!!!!!!She has surprised everyone on this floor with how well she is doing through this all!!!! She got the same 3 treatments as yesterday, fludarabine, ATG and cytoxan. She sailed through fludarabin and she had zero side effects from ATG today!! We even got to go to the playroom for a bit while she was getting all her premeds for cytoxan!! With the amount of cytoxan they are giving her, they ideally want her to sleep while it’s going. She got Ativan, Benadryl and zofran as premeds which normally knock her out! Not tonight!! She was eating a McDonald’s hamburger through it and playing with her Barbie’s!!! We are so proud of her! She is strong and tough and so amazing and resillant! Tomorrow morning, we will go by ambulance to MD Anderson for her to get total body radiation. We feel confident she will do amazing through it!!! All of her cbc numbers are getting closer to 0 which is so scary but ultimately, that’s the goal!! We are so close to transplant day!!!

Day -3
We were dreading today! She got her fludarabine (same chemo as she’s gotten the past 2 days), the ATG that she received yesterday that made her feel so crummy, and then she also had to get a high dose of cyclophosphamide (a stronger chemo). We were anticipating another not so fun day today, but she exceeded all of our expectations and did GREAT through all 3 today with very few side effect.
This morning started off a bit rocky. She woke up at 3am with a 103 fever. Got back to sleep around 4:30 and we’re back up at 7:30 with a headache and some nausea. Got her back to sleep and she slept all the way till 1! When she woke up it was night and day difference!!!
We are so thankful she felt good today!! She polished her nails, played with her babies, we walked the hallways, had a popcorn party and finished off the day off with a bath and a spa day and no spa day is complete without a face mask!!!
Tomorrow will be the same medications as today and we pray it goes just as smoothly as today went!!!

Day -4. A quick little update on Josie’s day today. Today she got her 2nd dose of chemo. And in truly Josie form, she did her makeup while getting hooked up to it!! Once she finished up with that round she had to jump straight into getting ATG. That drug goes for 6 hours straight. We started out smoothly but then she got rigors. They were quick to get control of it. Then she spiked a fever and we had to pause the ATG treatment to give her body a little break and start running cultures to make sure the fever isn’t related to anything else. Got hooked back up to finish and the last 10 min she ended up with hives on her arms and face which was quickly treated as well. Her little head hurt a lot today and she would get dizzy often. And then her fever came back with a vengeance around 8 making her feel super crummy. Fever still hasn’t broken completely but the tylenol def is making her feel so much better!

We are finally here!!! Finally at the starting line! We made it!!! Let the healing begin!!! It is both excited and terrifing all at once! But our Josie girl is a tough one! And there is no doubt in my mind she’ll amaze everyone through this whole process!!!
We got all checking in yesterday! We pushed the limit and soaked up as much sunshine as we could before getting here. We got all unpacked and organized hung up some lights and decorated the room in all princesses!!!

Today marks 2 weeks in Houston.
Josie had all of her organs evaluated that first week and did great through all those tests! We were ready and prepared to go in Jan 11th at 6am when we received a phone call at 6pm the night before letting us know her donor ended up sick and not cleared to donate till Feb 7th. We were so disheartened by that news but so thankful we found out when we did!
With the postponement of her transplant and the time that has passed since her last bone marrow biopsy and aspiration, they are having to repeat that procedure to make sure nothing secondary has formed. With that procedure, they will go ahead and place her line at that time as well.
Both procedures are scheduled for this Monday the 22nd. She will go in at 9:30 and receive a platelet transfusion and then we will head down to the surgery floor.
New admission date is set for Feb 1st and new transplant date is set for Feb 7th.

We have so much and so many to be thankful for! The amount of love and prayers that have been poured over us is mind boggling! The amount of care and love we have been shown from family, friends, and complete strangers that are now consider family gives us this overwhelming sense of peace and calmness. We will never be able to adequately thank everyone for the acts of kindness, the thoughts, the prayers, the phone calls, and the text messages!

Please keep Zoe, Slate and my parents in yalls prayers! They are doing so great which definitely eases our hearts!! Please continue the prayers for Josie! Pray for all the medical team working together to get her to the finish line! Pray for this sweet young man who is getting over some type of illness and turning around to give our Josie girl a great life! He is pretty amazing and I pray he knows we over here praying for him daily!

When they say it takes an army, they aren’t kidding! We have a fierce and strong army and I hope our donor knows he’s forever part of our army as well!

They have already contacted her PERFECT, 10/10 matched donor and he/she has accepted!
What an incredible, life changing gift we are receiving from complete strangers this Christmas!! BEST. CHRISTMAS. PRESENT. EVER. This person is gifting Josie a future!!! A present that leaves us speechless! The fact that this person would step forward and start this process for our baby girl so quickly and eagerly AND this close to Christmas is nothing short than a miracle!! We will be FOREVER grateful for this amazing human being. Whoever they are out there, I hope they know just how much they are changing our lives! We are so very thankful for them and their willingness, kindness and compassion. I hope and pray we get to meet this incredible person face to face one day to show them just how much they mean to us!

We are getting to come home for Christmas!!! So thankful for that!! The day after Christmas we will leave again for Houston. We have to do a few additional tests to check all of Josie’s organs to make sure they are good and strong enough to go through with this process and get her central line placed. She will have to receive chemo and radiation to prepare her body to accept the new bone marrow. This will zero out her entire immune system and get rid of all her existing bone marrow so her body can accept the new bone marrow.

As of right now, January 6th we will be admitted for a 6 week stay in the hospital. January 12, if all goes well, will be her transplant day!!! Transplant day will be +0 and they count everyday +1, +2, so on. After the 6 weeks stay in the hospital, we will move in to a near by apartment until day +100.

We spent Dec 14-22 in Houston with some intense emotions but…….. we are coming home with the BEST Christmas gift ever!!!

We joined the transit study trying to prove an unrelated transplant is superior than doing immunosuppressive therapy (IST) as first line treatment. It was a 50/50 chance on which treatment she would receive! We were praying to get into the transplant arm of the study, but ultimately, we were praying for God to put her in whichever arm that would heal our baby girl!
After a few ups and downs, a 2 hour conversation with our doctor, having a few delays due to labs and some tears later, we were able to get our signed consent forms over to Boston Children’s for them to do the randomization! With in 10 min of signing, we had our path!

Josie was selected for a bone marrow transplant!!