Kleats for Kadesh
The Flow cytometry came back and Kadesh is not in remission...
October 31st results were 75% Leukemia.
Today they stated he has 15% Leukemia even after this blast of a round.
His Leukemia is very resistant and I'm shaking my head to type those word.
I don't understand.
I just DON'T.
Why in the world I have to walk upstairs and drop this bomb on my son.
We are really in a place right now as what to do...
Not wanting to put him through more chemo and he is not wanting anymore either.
Honestly i just want to put my fist through a wall- and I still might.
You know your mind raises and rambles in moments like this.
Completely helpless and crying out to the Lord.
Lord, how can I turn your heart- to turn this away and remove it from our sons body.
The doctors asked if I had anything to say or questions and I almost couldn't speak.
I just blurted out on the phone with my hand raised-
"All I can say, is that I know the Lord who created You and the Lord who made me- and I know like a flip of a switch - HE can heal and make Kadesh well at a word."
And I had to lay it down.
Damascus and I immediately talked and prayed and then went straight up and anointed Kadesh's and prayed for Him.
So many passages fly through my mind concerning our son.
The woman with an issue of blood who spent all that she had for healing- but nothing- not until she reached out and touched the hem of he Lords garment did her healing come...
The man who was let down from the roof into the middle where Jesus was needing healing because there was no way to get inside- and he needed immediate healing...
The mother who pleaded for healing over her child and persisted to the point after being turned away multiple times by Jesus, she stated, "that even the crumbs that fall from the Masters table, the dogs are able to eat."
Hezekiah-told by the Lord that he was going to Die- Hezakiah wept bitterly and cried out- and the Lord heard- and was moved to extend his Life 15 more years.
These are the passages ringing over and over in my heart daily.
If Jesus was here tangibly I would
Do whatever it took to bring Kadesh before his feet to be healed...
But now- I cry out- where are you Lord- help me to pray and please be willing to heal the son you gave us.
So we cry out to help us in INTERCESSION
To the Father to hear and heal.
To guide us gently with our young and show us his way clear and precise.
Damascus and I need unity in the plan for Kadesh's life and a calm only Christ can give.
Wisdom- and we KNOW Christ will give it to us if we ask in faith.
So we ask father- hear our cries.
Kadesh's entire diet is changing with herbal supplementation, heavy organic juicing and total food rearrangement-which is totally kicking my butt
To get in order.
So much is on the line- our other babies are so devastated when we have to leave them constant...
Please pray for all the details and the issues of the hearts of us all to be radically transformed and drawn together in unison through all of this.
Please pray for my parents as they have been here the entire way helping carry the Load with us in tending to our other five children while I have Kadesh and Shiloah.
This will be the same post located on our go fund me and I would ask that you please please Share this post as much as possible.
Every single dime will be used to help heal our son...
And I thank you all so much in advance for any help.
Much much thanks to the women who have been swinging by with an hour here and there to help me maintain sanity with laundry and dinner.
I'm seriously so blank and I've been so disoriented trying to maintain existing-
That the needful things are falling and I'm buckling.
These women have been incredible and praising the Lord for them.
Kadesh has been doing well-
But we will be readmitting to the hospital This week for Anatole' to provide more cells to Kadesh through an apheresis machine procedure...it's pretty extensive and we ask prayer for her and Kadesh in this for fluid results as healing.
One of his cell lines is only performing at 24% and it should be 100% at this point...
We covet all of your prayers in this- we are quickly approaching day 100- unBELIEVABLE but today is Day +91!!!!
With all this going on- we are about to give birth to our 7th on earth in less than 2 weeks as well as move into our new home as I'm tutoring Kadesh and the other kids in school with my parents helping...
We have been getting random medical bills on top of it all from lapsing insurance- it's been overwhelming all the financial pieces to this but the Lord has been faithful in provision...
This go fund me is only here as people feel led to give- but I did want to give updates as to all that is going on...
Kadesh will begin more immune suppression meds- SO IMMEDIATELY We will be purchasing a $2500 commercial grade HVAC HEPA filter that is worth $5000 for our new home so Kadesh can run around anywhere in our new home and not just one- to- two rooms forced in wearing a mask constantly- as well as new mattresses and box springs for all the children and ourselves- with new couches/ furniture to replace all we lost...
Floors upstairs will come as we can to remove carpet and install wood or tile for the children...
But this will be in time.
Soon hopefully. Every little bit helps and we truly are thankful for all you guys have done.
We pray to the Lord Jesus for His hand that holds all things together for this and extend the invitation to you if you are led to help in any way.
So many have asked- and here it is❤️️
I wanted to try to explain where we are with Kadesh right now...
Many of you are asking and I've not completely explained- as best as I can- where we find ourselves in his moment.
Anatole' s bone marrow was harvested and given through IV to Kadesh and it was so humbling to watch...
But now we are in a time of waiting.
With prior cycles, When Kadesh receives chemo- his ANC, that is allowed to build on his weeks out,
Is slammed and drops to 0 with each round killing off the good and bad cells to the point they fall back and then recover- which is why in he meantime waiting you have seen him become what they call "neutropenic" with a zero ANC and he will get fevers- risks of infection and sickness are higher because his immune system is shot, a few times the fevers turned out to be bacterial infections in his blood with sepsis-which is key reasons why a child with AML MUST STAY IN HOUSE or IN the HOSPITAL... with him not being observed closely in this state- being outside with these complications- we could lose him- so ALL AML children are treated in house and we stay for the months at a time through this until break- whenever we see the trend with his ANC restoring itself-
So a trend up for a few days hitting 100 is what we look for...
This final round of chemo
Was the greatest intensification with conditioning that he has ever been through and the risks and side affects are awful- they of course have to tell you the worst up front multiple times to prepare you for anything due to the fact every child responds differently- to the point all I could do was weep in disbelief of what in the world am I about to do to him...
But rest assured if we did not follow the tract set before us for him- relapse would happen because his Leukemia is so aggressive - to wait and do a bone marrow transplant later the success rate would be slim to none...
So, without a word from
God of total healing at that moment over him, we have followed the wisdom given by God to the doctors to treat our son giving this last round with the transplant.
This chemo given completely wipes all of Kadesh's cells out- there will be none left
And if we left him with out a transplant WITH ENGRAFTMENT he would die... it makes me sick writing... BUT GOD gave us Anatole'.
Her cells went in and they are in his body now, but his ANC from before has been very slowly dropping and today Kadesh is at 60
On day +10...
ENGRAFTMENT IS THE KEY and it typically happens around day +14 +15... every child is different.
With the engraftment sickness and infection can compromise and we could lose it if an infection became too great- which again is why we are on STRICT CONTACT PRECAUTION... anything can throw him.
Once engraftment takes place- he is on watch for what they call "Graft vs. Host" (GVH) Disease which they would like to see each child get a little of this- due to the fact- there may be residual Leukemia cells hiding- and if there are- we know that Anatole's cells would not stand for it and they would destroy all Leukemia cells left...
On the other hand- GVH can be devastating if left to itself- because that would be Anatole's cells not recognizing Kadesh's body and destroying his body and we could lose him...
THEREFORE- he is on immunosuppressant drugs that counter this effect and keep this under control and he is on extremely tight watch- constant and After engraftment and effects of GVH can manifest immediate or later on- it's all watch- but if nothing has happened by day +100 he will be pulled off immunosuppressant meds and free...
Once engraftment happens his ANC should rise pretty quickly compared to before due to Anatole's cells never seeing chemo- but even if his ANC is 4,000- it will be as though it is 0 due to the fact he is on immunosuppressant drugs to keep GVH tamed so to speak... that's why the 100 days...
There is such extreme particulars with home and living conditions and cleanliness and eating stipulations...we can NOT take a chance.
When Kadesh releases from the in house time here at the hospital which will mean he had had 3 consecutive days of an ANC of 500and no fevers for 24 hours- we go home...
But we will have 2 possibly 3 Dr. Visits a week checking numbers and levels to make sure he is on track and that he doesn't have need of transfusions... and also change dosing of meds if needs be...
Kadesh again will no longer have Kadesh cells because his cells have been completely uprooted and destroyed
due the fact he was producing Leukemia cells-but will now have a totally new DNA... which to sit and ponder that one thing for me blows my mind. This is why they have a "Happy New Birthday Party" because he is reborn so to speak.
May 22, 2017.
I've tried to explain this as accurately as possible- I'm a mother trying to understand it all myself...
But this is so far what I have learned and what I know to convey to you all- so many have thought, "oh it's done!" Now "what's wrong??" but, I've not had the time to go into the great detail- and there is so much more to it...
But I hope this explains where we are on the tract- where Kadesh is right now and what we are praying and looking to happen with GREAT perseverance.
***Below I have posted a photo
Which best explains to me the line of stem cells effected by Each disease:
AML(which attacks the Myeloid stem cells)
ALL(which attacks the Lymphoid stem cells)
And you can see here why the disease that Kadesh has-AML M4 and AML in general is such a more aggressive Leukemia due to SO many more cells being affected- AML is aggressively hit within a 6-7 month time in house stays and ALL is hit over a span of 2-3 years(depending on the sex) and the ability to go home... unless it is a baby which is a whole new ball game...
And as well there are so many branches of each and they all require different treatments-
But baseline this is what you see with AML and ALL diagnosis.
Not everyone requires a bone marrow transplant, but if the chemo does not put the disease in remission after the first round its generally an automatic. As in Kadesh's circumstance, his Bad Blasts(Leukemia diseased cells) originally were 90% and after the first round of chemo he still had 40% bad blasts and his MRD (minimal residual disease) was 20% and they wanted him 5% to 0% I believe- he was an automatic rush in and hit again and we were told Bone Marrow transplant was our tract to kill it...
So again- Kadesh had the transplant- and his stem cells at the root the base of myeloid and lymphoid of what you see in this picture are being destroyed as I write this...this picture is gone within him...
Anatole' stems cells THANK YOU JESUS AND THESE AMAZING BRILLIANT DOCTORS AND SERVING NURSES... her cells are ON THE CHARGE TO BRING NEW LIFE TO KADESH.
And I say again...
They will ENGRAFTMENT and take root and home within his bones and reproduce all the brand new cells he needs to begin NEW LIFE and sustain❤️️❤️️❤️️❤️️❤️️❤️️❤️️
"Through the tender mercy of our God; whereby the dayspring (ANATOLE') from on high hath visited us,
To give light to them that sit in darkness and in the shadow of death, to guide our feet into the way of peace."
We are about to release for Kadesh's final break... his ANC hit 104 today, and so we are watching to see if he keeps trending up- and we may be released tomorrow afternoon.
Things are really starting to settle in...
I want to start asking for intense prayer right now for Kadesh.
I would love for you all to share and share and share this- just so to build up a covering even now with Kadesh and our family- because really we are just beginning our journey- prayerfully conquering his AML... needing complete continued remission prior, for his transplant to be successful and for his sister cells to take and be received by Kadesh's body- that his body won't reject.
His BoneMarrow Transplant will begin starting with aggressive chemo May 9th...
It is a very big deal, more than I thought... I am reading through the paperwork just sobbing.
Not wanting to do it- not wanting to put his body through this.
Possible side effects are horrific- but not all of them happen- it is case by case...
The chemo he will get over a 7 day period is nothing compared to what he has had.
To put it visually:
A cup of chemo each time is what he has received at the beginning of each month...
In comparison at transplant he will receive basically a gallon of chemo in 7 days.
Effects can begin at times immediate or take about a week to two weeks to show up...
After he goes through the final intensification chemo- he will have zero cells left- he will be baseline
The only way Kadesh will survive this- is by Anatole' donating her bone marrow to save his life.
They will be prepping her with iron supplements one week prior and for 2 weeks after-
she will go into the hospital the day of Kadesh's transplant where they put her under and pull her bone marrow from her pelvic bone through her lower back and draw according to her weight and what she can handle as to not compromise her to the point she would need a transfusion- so they will pull according to her weight which will be 320 milliliters of bone marrow taken from Anatole' to transplant into Kadesh that very same day., and she will stay over night to be monitored and given pain meds as needed.
Kadesh will receive Anatole's cells and then its waiting and watching and intense praying.
He will basically be under quarantine and only able to leave the room 2xs a day with mask gloves and gown for 30 minutes to walk the floor...
The restrictions will be tighter than ever due to keeping him from complications and infections.
From the day he receives her cells until day 100 we will be intense watch mode- once he engraftment and we leave the hospital, which will be possibly around day 40-50, I will be solely in charge of all the medications and flushes and weekly appointments- either 2-3xs a week at Nemours for hours at a time.
His living conditions must be pristine with hepa filters located where he stays most to keep the air as clean as possible , which is a whole other topic-with aggressive prep, and he will be able to go out of the house as long as he wears a mask through day 100.
We have a lot to do and prep for prior to this new round birthday coming for him- but as well Kadesh has some things he wants to do before he goes in this last big round...wanting to keep my promises.
Thank you all for praying for us and with us, this has by far been THE hardest thing we have faced as a family- but I know that Jesus is our only hope to make this and may faith has flat hit the ground... over and over just being real- so much ups and downs.
But we need Jesus as our constant and our stronghold- and I know your prayers have pulled us through- it's amazing to watch.
I'm holding out hope.
Praying for Kadesh's heart to be strengthened in the Lord and the power of his might in the inner man... rooted and grounded in love... to comprehend what is the length- width- breadth- height of Gods love for him and all of us to be united in truth and love.
I cannot properly go through and thank every single person- I'm so limited with my time - us you all have overwhelmed us with your love and support the prayers cards gifts financial support- we pray the immeasurable blessings of Jesus to be experienced in your life through the power of his Holy Spirit. " as you have done it unto the least of these my brethren you have done it unto me." ~Jesus
Just found his story, praying for you all on this significant day!!! I cannot imagine how hard this has been on every single one of you, but to see how Christ is growing you through this and constantly pointing you back to Scripture, even when you feel like your faith has hit rock bottom, is so amazing. Christ even bore our sicknesses (Matthew 8:16-17) and He is there with Kadesh to give Him that powerful grace that is made perfect in weakness (2 Corinthians 12:9), to heal Kadesh miraculously or through medical means like this, and to give him and all of you that amazing comfort in every hardship (2 Corinthians 1:3-4). Keep clinging to Him and casting your burdens on Him, letting Him restore and hold you! He has got this! He already gave us the victory through His death and resurrection!! "“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”" (Matthew 11-28:30) In these verses, Jesus has just talked about how God has revealed Himself and His truth to "little children" and invites people to come to a relationship with Him. Even for us as believers, I think these verses still hold true...when we are weary and burdened, we must go to Jesus!! As Isaiah 40:29-31 reminds us, the Lord gives us such renewal and strength to soar like eagles even when we are exhausted!!!