Update #34
Hello Dear Ones,
I wanted to jump on here really quick and let you know I have added a bunch more pics to the gallery from the last two years and also have added a bunch of pics from the Make-A-Wish Wines and Wishes Gala that Magnum and the family were invited to attend on September 9, 2023. Magnum was the special guest and ended up being the star of the show where he was granted his wish to be a fireman for a day. Magnum is the 10,000th wish to be granted in the Sacramento area. While at the gala, Magnum was invited up on stage to put his handprint on a painting that performance painter, David Garibaldi, had just painted. We got to enjoy appetizers and looking at items from a silent auction. Magnum and sister, Cadee, were able to try out a neat little video device that spun around them. Magnum and the family also enjoyed riding the escalator a few times while waiting for supper.
When Magnum was called up on stage with mommy and they were being interviewed, a siren went off and music from the Sacramento Firefighters Band started playing as Magnum pointed to the firemen he saw. The Fire Chief and his boss and the Captain from Shingle Springs firehouse walked on stage and they proceeded to present him with personalized fire helmet and the declaration that he would be a fire man for a day on October 3rd. Magnum was excited but stood very seriously and attentive to the Chief’s boss reading the declaration. I am not entirely sure Magnum understands all that he will be getting to do, but I know he is proudly walking around telling people he is going to be a fireman….but an American fireman for a day.
Update #33
Hello Dear Ones.
I know it has been a very long time since I have been on here and put out an update. I will try my best to recap the events of last two years since August of 2021.
In the middle of August 2021, Magnum’s Papa, Grandma, Aunt Talia, Uncle Jacob, Uncle Sam, & Uncle Micah were evacuated to our apartment due to the Caldor Fire. So all 11 of us in the tiny apartment along with 7 cats and a dog….what an adventure! Unfortunately, during this evacuation, Magnum and his entire family of 10 others came down with COVID. While Magnum and his two siblings had very mild cases of it some of the older family members got hit pretty hard with symptoms and fatigue. Both his Papa and His Daddy got the worst of it. They both ended up in the hospital by the end of August. Sadly, Papa and Daddy suffered through days that turned into weeks of trying to recover and get better, BUT GOD knew the outcome. Bittersweetly, GOD called Magnum’s Papa home to heaven on September 16, 2021 and on September 24, 2021 Magnum’s Daddy went to heaven to join Papa and GOD.
In October 2021, Magnum developed a rash all over his torso and back. Magnum and his family held a double memorial service for Papa and Daddy on November 6, 2021, which also happened to be the one year anniversary of Magnum’s bone marrow transplant. Only GOD could have orchestrated that! Later that month Magnum and his siblings and mom and Aunt were in a car accident. BUT GOD kept everyone safe…Praise the Lord!!
Magnum continued to have monthly phlebotomies and, along with his family, started to navigate this new life with the holes left where our dear loved ones used to be. GOD continued to show His provision and give us sweet coverings just like He did during Magnum’s transplant and the deaths of his Papa and Daddy.
In March 2022, Magnum started to stopped doing phlebotomies due to his mom seeing that he might not need as many as the doctors were saying. At his June 2022 appt., at UCSF, Mom talked with the doctor about having a T2* MRI done for Magnum. This type of MRI detects the iron overload levels in the organs. So in August of 2022, Magnum got his MRI and in November 2022, we got the results, which stated that he had mild iron overload in liver only. So we went back to monthly phlebotomies starting in February 2023. In July 2023, Magnum had his last phlebotomy before his next T2* MRI on September 12, 2023.
Typically they say that a patient needs as many phlebotomies as transfusions to be rid of the excess iron. Magnum had 21 blood transfusions in total. By GOD’s design and grace, Magnum has only had 12 phlebotomies. GOD gave his mom the forethought and desire to help her son chelate as much iron as he naturally so that he wouldn’t have to suffer through more “pokes” than necessary. Through the use of turmeric gummies and turmeric and garlic chicken and a special pesto sauce made of garlic, cilantro, and parsley, Magnum’s body was able to do extra chelation in between phlebotomies. As of September 14, 2023, we are overjoyed and so very grateful to our GOD for healing Magnum’s body and the doctors declaring him iron overload free!!! WE are done with phlebotomies!!!!! Thank you, GOD!!!!!
Update 32
Hello Dear Ones,
I am so sorry for such a long time of silence since my last update. I will try to do a mini update in between appts next time so that the silence isn’t so awkward 🐢.
The last three months have gone by so quickly, most of it seems like a blur. Between finishing up Remi’s school, planning out the summer, planning out this next school year, appts for Magnum, appts for myself, and trying to maximize the cooler days of summer and Shawn’s days off, I can barely remember if I washed the load of laundry or not! (So, I wash it again just to be certain! Lol)
Magnum had his first phlebotomy in May and, as always, he did great. As he gets older the pokes are becoming harder to get through because he is anticipating them more. He still makes it through most times without even a tear. The staff always say, “he should teach the teenage boys!” My champ!
Magnum turned 3 years old in June. He also had his second phlebotomy in June. Shortly after he had his third phlebotomy in July, Magnum’s Aunt Talia was in a horrible car accident, in which she sustained severe injuries…..BUT GOD protected her from death and paralysis. Thank you, LORD!
On August 10th, Magnum had his quarterly appt at UCSF to see Dr. Dvorak (head of BMT) as Dr. Shimano was not in office that day. He also had labs (CBC w/diff, CMP, thyroid hormone levels, ferritin, iron saturation percentage) drawn and his fourth phlebotomy. The doctor said that Magnum looks great, but to keep applying steroid cream and lotion to his skin as his scalp and belly button areas. Because his body seems to be having an issue clearing up the inflammation and his skin overall feels dry.
On May 12th, Magnum’s ferritin level was 1010. As of August 10th, his ferritin is now 694!!! Also, his iron saturation has gone from 66% to 26%!!!! Which means……………. MAGNUM IS PHLEBOTOMY FREE!!!! (We will still be giving him turmeric to lower his ferritin level until it is back in the normal range.) I was told that typically a patient ends up having about the same amount of phlebotomies as blood transfusions. Magnum had 21 transfusions. He had 4 phlebotomies…..4!! BUT GOD!!!!!!
We continue to be overwhelmed by the blessings GOD continues to bestow on our family regarding each and every hiccup that occurs in our lives. GOD is truly watching over us and holding each us in His hands. We praise Him and give Him all the glory, for we know that without him many of our family wouldn’t be here today. We continue to thank GOD for you, our God given family of prayer warriors, who lift us up to Him!
We love you all!
Magnum and Fam
♥️
PRAYER REQUESTS:
*For Magnum’s skin to keep getting better and the inflammation to subside.
*Aunt Talia to continue to recover from her car accident and the significant injuries she sustained.
*Our friend, Anthony, who is still recovering from his transplant.
*Our friend, Ojas, and his family.
*Our friend, Ryland, and his family.
PRAISES:
*Magnum does not need anymore phlebotomies at this time.
*Aunt Talia is recovering well and is up walking around.
*Our friend, Anthony, finally being discharged from the hospital again.
Isaiah 43:2
When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you;
when you walk through fire you shall not be burned,
and the flame shall not consume you.
Update #31
We are home and adjusting to being together as a family again! I think I am having the hardest time adjusting. Going from one child to three is difficult but even moreso when one has a sensitive situation and another one has school and another could do school but also could play but needs just as much attention as the others. Having them as babies one at a time was much easier. LOL! Even so, we are so very grateful and blessed to be back together.
Mother’s Day was the best just having all three of my babies with me to hold and love on. So bucket filling!!
Right after Mother’s Day, Magnum had his first doctor’s appt at UCSF, since being home. We did labs and then saw Dr. Shimano. She was very happy that Magnum’s skin was looking better. She said he will be eligible for his vaccines starting in July after they do titer panels on him. We will see her again in August as we have now switched to appts every three months! Yay!!
Dr. Shimano also said that since Magnum’s liver levels are almost all normal (only one is slightly elevated still) he is able to come off the Ursodiol medicine which was to protect his liver. So he is now off all medicine!!! WOOHOO!!! Thank you, LORD! He still takes daily multivitamins and turmeric.
Last we had shared, was Magnum having a ferritin level of 1668 (normals is 22-322) back on March 31. On May 12, his ferritin was at 1010! We were able to drop it 658 points in just six weeks using only the turmeric! BUT GOD……!!!!!
Along with the ferritin level check, he had an iron percentage saturation test ran. It came back at a 66% iron saturation. This is extremely dangerous for Magnum as the normal range is 10-47%. So, Dr. Shimano ordered monthly phlebotomies to help bring down the saturation. He will have his first phlebotomy on Tuesday, May 25th, at UCD infusion center. It will basically be like an extended blood draw because he is so small they can’t take off very much.
We continue to be amazed at the strength and endurance and patience Magnum has shown during this grueling journey. We also continue to give all glory and praise to our GOD up above because He is the only reason we are doing so well in all aspects. We also are very blessed and continue to thank GOD for each one of our prayer warriors, who lift us up!
We love you all!
Magnum and Fam
♥️
PRAYER REQUESTS:
*Magnum’s phlebotomies to go smoothly
*Our friend, Anthony, who is finally responding to dialysis treatment and overcoming so many obstacles (chickenpox being just one) as his body fights to recover.
*Our friend, Ojas, who was able to go home but had his CMV flair back up.
*Our friend, Ryland, and his family.
PRAISES:
*We are home and together as a family.
*We are almost completely adjusted to being back home.
*Magnum’s skin is doing better with steroid cream.
Pics:

Mighty Magnum has his own official superhero garb thanks to a friend!

Holding hands with big sister in their own beds.
Update #30 (April 17, 2021)
FREE TO GO HOME!
PRAISING GOD FROM WHOM ALL BLESSINGS FLOW!!!
On Friday, April 16th, MAGNUM CAME HOME! His functionality test came back and he is at 79%!!!!! Pressed down, shaken up and overflowing….that was a HUGE jump for only two weeks between the tests.
BUT GOD…..
The LORD has given Tashina such an amazing researching mind all through this. At times she was even presenting to the doctors some of the research she had found. One such time, with his functionality going so high in 2 weeks time. Tashina looked to see what might boost T-cells and read that eggs were especially important in forming and functioning of T-cells. So Magnum had eggs everyday and some days twice for that week, as well as the turmeric (immune boosting, which is T and B-cells). Of course, we give the glory to GOD! BUT GOD, can use eggs and turmeric if He wants! One of the doctors even decided to get Magnum’s baseline for his feratin (iron in the blood), so that he could see if Tashina’s theory of turmeric truly plays out. We shall see! There is no sign of issues with Magnum’s level of iron at this point; however, he does have too much for his system. Feratin levels should be between 5-100….Magnum’s is 1,600. The doctor said they would do phlebotomy if the levels were over 1,000. They took the baseline and Tashina started turmeric and they will test again around August to see if they will, in fact, do phlebotomy.
BUT GOD….was not finished with the good news. Magnum’s B-cells which should have come in next between 6-9 months….ARE FULLY IN AND FUNCTIONING. NO ONE BUT GOD!!!
There will be periodic updates to the website as Magnum will be seeing doctors and having labs and tests for the next two years. Please feel free to reach out at ANY TIME to inquire about what is going on with Magnum. As one friend put it, he has become all of ours as we have prayed for him.
We want you all to know how much you have meant to us on this journey. Without GOD, your prayers, your encouragements, your walking with us….we would have journeyed in a lonely, dark way. Instead, though it has been hard for us and our families, there has been joy and light and the ability to pour out and reach others for Jesus. THANK YOU DEAR, SWEET PRAYER WARRIORS!!! I must say for myself, that when my heart was at its lowest….GOD would reach out to me through one of you (I’m sure to you it was just a message or sharing something with me)……AND HE WOULD LIFT ME TO A GLORIOUS PEACE AND JOY!!! THANK YOU DEAR ONES!!!
PRAYER REQUEST:
• Magnum does seem to be battling “his own” skin issues with SEVERE dry skin. He bleeds easily with scrapes and scratches. So we are not sure if this is his body’s version of some GVHD or just the newness of each season as meds go away and he gains back his strength.
• Please continue to pray for Anthony as he is in the hospital as they try to get his kidneys back in normal range.
PRAISES:
• WE ARE GOING HOME!!
• Magnum’s B-cells are fully in and functioning too!
• Two families (Ryland’s and another) we met in here are going home by the end of the month as well.
May the LORD richly bless each of you with His great love, grace and mercy. And May you all fix your eyes on JESUS, the author of this life. We love you!
Love,
MAGNUM and Family
♥️
PSALM 100
A Psalm for giving thanks. Make a joyful noise to the LORD, all the earth!
Serve the LORD with gladness! Come into His presence with singing!
Know that the LORD, He is GOD! It is He who made us, and we are His; we are His people, and the sheep of His pasture.
Enter His gates with thanksgiving, and his courts with praise! Give thanks to him; bless His name!
For the LORD is good; His steadfast love endures forever, and His faithfulness to all generations.
Pictures:
• On a time out…he knows he must fold his hands and close his mouth to be able to get up……he was like “look at how cute I can show you how to do this!”
• Getting to touch things from the ground for the first time…(picking up a ball to throw.)
• Home and happy!!
Update #29 (April 1, 2021)
Dearest Prayer Warriors,
I just wanted to send a short update and wish you all a HAPPY EASTER! May you each reflect the great sacrifice and glorious redemption given to mankind in Christ;s death and resurrection. The Lord knows our hearts. My prayer is that He would strengthen any of your hearts and draw you closer to Him as your Lord and Savior, that you will accept the gift He has for you now. I am just putting out this quick update, as I know you all have been praying for Magnum’s functionality test. We did receive the results yesterday. He is at 38%. We are not quite there at 50%, so it will be another two weeks at least. We know it is God’s timing getting Magnum’s through each phase of this. Many of you have said “how hard his must be”…and yes, it is hard to be away from your families for 4-5 months. However, it’s the same as if we were home for Magnum in some ways. We have hit that “terrible/terrific” three year old attitude. He is so full of joy and has such sweet manners…THEN BOOM HE IS CHALLENGING EVERYTHING! He continues to make us laugh, which is GREAT when you are inside 4 walls so much.
We also are able to meet with the family at a park and play without masks as long as no one else is around. THAT IN AND OF ITSELF HAS MEANT THE WORLD TO US! WE ARE EVER THANKFUL AND PRAISE GOD FOR HIS GRACIOUS HAND. I just wanted to send a short update and wish you all a happy Easter. We could use some EXTRA PRAYERS PLEASE because while it is hard to have postponed Christmas and now Easter…it has been EXTREMELY difficult this month. Magnum’s Aunt Erin and cousins, Ella and Rob (our other grandkids) were visiting from Germany, as well as Magnum’s great-grandma (Bob’s mom) and great-aunt (Bob’s sister) from southern California. We were unable to see any of them at this time. We know the Lord is in the timing of EVERYTHING IN OUR LIVES, so we take solace in Him. Though we do not have the news we all want for Magnum yet, there are positives to focus on. GOD ALWAYS ENCOURAGES US AND IS EVER FAITHFUL!
HAPPY EASTER EVERYONE! GOD BLESS EACH OF YOU AND THANK YOU FOR YOUR LOVE AND PRAYERS!
Love,
Magnum and Fam
Pictures:
* Happy Easter from Magnum and T-REX
* He loves to read the Bible with Gma…though I think he really likes turning the thin pages…ITS A START!
* Out with family playing kickball
Update #28 (March 20, 2021)
Dear Prayer Warriors,
Sending our now “once a month” update. The month has been a blessing with a bit of stress. We sent out a Prayer Request on February 25th, stating that Magnum was going into surgery to have his BROVIAC removed. WHAT A TREMENDOUS BLESSING!!! One cannot imagine beforehand how much this one thing, removing that line, can mean. First, there is the plain fact that Magnum can bathe and shower. Now, if you know Magnum, little fish that he is……THIS IS HUGE!! He was hesitant at first, still cautious sitting still. (You see he would be wrapped in Saran/Cling Wrap before he was put in tub and his BROVIAC sealed off….as best as could be…..and he could not get water up around his shoulders. Plus the wrap would pull on him as he turned, so he would just sit ridged and enjoy the warm water.) He just sat there still like before with the wrap on. When Tashina showed him he could do all he used to do…..he was enthralled…..bring on the finger paints, the bubbles, etc. However, the best moment for this grandma’s heart was when he asked for the shower to be turned on and he just sat under it moving around and enjoying every drop hitting him. We asked him time and again, “you ready to get out, bud.” The reply came emphatically, “NO”…..with ALL the force of a 2 1/2 year old!! He must have sat under that shower for 30 minutes that first time. Just blessed my soul!! And then there was bedtime. You see, he HAD to be started on oral magnesium, because without the line in, there was no way to give the infusions of magnesium overnight. This meant no lines to get tangled in, no abnormal tossing and turning, no beeping, etc. Just Magnum and his hands behind his head (as I’m sure you’ve seen in other pics) deep in sleep. Another blessing!! Along with these things, there were other small things that changed because the line came out. Not all were great, as he does have to have more pokes for the meds he remains on that are given by shot or an IV line. These are every two weeks unless he needs more. He has needed a few more shots since getting out of hospital. But he is a CHAMP! He still blesses everyone with his smiles and his “I love you” and blowing kisses as he leaves. Our “JOY BOY”! (As I am writing this, he is once again under the shower water using a wash cloth to wash down his finger paints….AND NOT GETTING OUT!!🤣.)
Every time we drive by the ocean, (which is anytime we are in the car, because where we are located) he exclaims, “Osin” (ocean) and wants to go there. He is very attached for someone who has only been there once and even then with a BROVIAC, so he couldn’t get wet.
In that Prayer Request was a “side note”about the functionality test we had been waiting on. Magnum’s T-cells need to be functioning at 50% for us to come off isolation and into next phase. They were at 18% at the time they were drawn, which was on February 17th. At this time, he was on full doses (2.4 mg a day) of an immune suppressant (Tacrolimus) we have mentioned many times before. So, the big picture is….he was functioning at 18% even though his immune system was being suppressed fully…..PRETTY IMPRESSIVE, RIGHT??!!!! We thought so!! Since then, they are tapering the Tacrolimus level and he is now on a dosage of .4 a day. At that time, they shared they would be testing the functionality again on March 17th.
Now, let me share a bit about the “happenings of day to day life” here. They are now requiring everyone staying here to do COVID testing once a week. There have been 2 notices of families contracting COVID here. Anthony, our 18 year old friend and his family are still here. Have been for over 1 year. He finished High School in the midst of all his illness. However, since we have been here he has had to go back in the hospital twice because his kidneys are not catching up to all that’s been done in his body. We were just told he will have to go back in for 2 months and they will do procedures to help his kidneys til they are stronger on their own. PLEASE PRAY FOR HIM AND HIS FAM!! He has a wonderful attitude about everything.
We also shared about a little boy named Ryland. He is doing well and they are awaiting results from his functionality test. He has an NG tube still. However, they will not be able to go home, but will go to a place closer to UCD to stay and have his next phase completed. PLEASE PRAY FOR HIM AND HIS FAM!!
There are many other stories here that we have no idea about. Please pray for Family House! We have met some staff that are believers (refreshing) and we have shared our stories of what GOD has done and some worship music with them. GOD IS EVER MOVING!!!
Just as we know the LORD is moving and surrounds and protects us, we also know this world is full of wickedness. We see so much of it here from the taunting of the police (right across the street from us) with motorcycles popping wheelies as they drive by, to the immorality that assaults you each time you walk out on the street.
We always make our COVID testing times on Wednesdays. This is the same day Magnum gets labs done, sees doctors, and gets infused meds or shots as needed. This past Wednesday, we walked out to start our day and were met at the car by a broken out back windshield. Just a couple of toys taken and everything rifled through. Thus, our day became difficult as we called the police and were told we needed to go in and file a report (which we had to do the next day…..THANK GOD!) and we were late to our COVID appts. We had to figure out how to get the back window replaced that day. Safelite does no mobile in SF right now. You see, the stressful part of all of this is that Magnum CANNOT have windows down as we drive. That day was his long infusion day and combine that with the fact that we try hard to keep everything sterile as they have told us to do for him. You have no idea if the person rifling through the back had any illnesses, etc. To us, this was the roughest part, but we trusted that each step GOD was in it with us. They finally found a Safelite 40 minutes away that would accommodate us after the clinic. So, we tried to figure something out to secure the back as best we could. At this point, as I looked into the back, we chuckled a moment and I thank the LORD for my law enforcement hubby and his training me in certain things. You see, (no, this next part is not an episode of “Dumbest Criminals”…..well, not yet anyway🤣) whoever it was dropped their lighter in the bin they rifled through in our car. 🤷♀️🤣 And right there in the bin was a nice freezer bag to “bag and tag” for DNA…..LOLOLOL🤣……you gotta love it when the LORD allows you to laugh in the middle of a stressful situation. HE IS SO GOOD TO US!!! Needless to say, we secured it as best we could, went to Safelite for 3 1/2 hours while they squeezed us in….once again GOD and His provision. I mean, do you ever stop and consider the tiniest details of our lives that GOD’S ever present help, love, consideration and care are part of? In SF, when it says rain, I don’t care if it says 10% chance…..IT RAINS!! So, there was a 30% chance of rain while we were at Safelite. Magnum cannot go in ANYWHERE while on isolation, except hospital and Family House. So, we had to sit on the curb across from them working on the car for those 3 1/2 hours…..and you know what…..NOT ONE DROP OF RAIN. PRAISE GOD!!! Tashina went to police the next day, reported the crime and gave the evidence.
END OF STORY…..Magnum did have his next functionality test while in the clinic that day. So we are in the waiting process (7-10 days) to see if he is at 50%. If so, we can go home for next phase (the B-cells coming in). In clinic that day, the doctor also sped up the rest of the tapering of the Tacrolimus, because Magnum’s chimerism dropped there is no real chance of any GVHD anymore. PRAISE GOD!!The biggest battle we face day to day, at this point, is SEVERE dry skin, which is part of the process we are told. Please pray for this, as it’s sometimes hard for him.
PRAYER REQUESTS:
• PRAY for lymphocyte functionality test.
• PRAY for Magnum’s severe dry skin.
• PRAY for continued energy and strength for us all (family in SF and family in El Dorado county) as we meet this battle. IT IS BETTER!!
• PRAY for the other families in Family House……ANTHONY and RYLAND and THEIR FAMILIES.
• PRAY for Nylada as you think of it…we may never know.
• PRAY that we show JESUS to all we meet.
• PRAY that GOD is glorified in all!
• PRAY that GOD CONTINUES to show HIMSELF to all
PRAISES:
• PRAISE GOD BROVIAC is out and he can enjoy water and sleep better.
• PRAISE GOD risk of GVHD seems all gone.
• PRAISE GOD the car issue was not worse.
• PRAISE GOD for His gracious protection.
• PRAISE GOD we are still able to see family every other week meeting halfway.
• PRAISE GOD FOR EACH OF YOU and your faithful love, prayers, and support.
• PRAISE GOD for Magnum’s joy!!
• Praises for Family House and staff
• Praises that GOD holds Magnum in His hands
THANK YOU ALL FOR YOUR LOVE, PRAYERS AND SUPPORT! We are ever grateful for each of you. May the LORD shine His blessings on you all and your families.
WE LOVE YOU ALL!
MAGNUM AND FAMILY
♥️
PSALM 86:10-12
For you are great and do wondrous things; you alone are GOD.
Teach me your way, O LORD, that I may walk in your truth; unite my heart to fear your name.
I give thanks to you, O LORD my GOD, with my whole heart, and I will glorify your name forever.
Pictures are:
Magnum gets possessive with popcorn….🤷♀️…..he likes to eat his mama’s too!
“Joy Boy” at naptime
Magnum showing his cars (from his “pokes”) to us…..he has picture of Papa he sets up in background
Update #27 (February 21, 2021)
WE MADE IT!!!! Day 100 was on Valentine’s Day. No signs up to now of any GVHD…..PRAISE GOD! And because of no signs up to now, we go from here with little chance of any at all.
The “ordinary” days are still in motion. Things do not change minute by minute like they were before and for that I am thankful. We know we went through those “real sick” days with Magnum as we see pics, but to look at him now….YOU WOULD NEVER KNOW!! GOD has been gracious and GOD has been good in every way. And I know He isn’t done yet! It seems every time Magnum goes to clinic there is a new BUT GOD moment. These moments have been EVER part of this process. His fevers, his hair, his ability to communicate his feelings, the time and again moments of this shouldn’t be, and his INCREDIBLE JOY (which no one at the clinic has ever seen a two year old take “ripping off” of chest bandages weekly with joy and he even aids in the process)……this is just a few of the BUT GOD moments we have witnessed and do witness.
This last month has had its highs and lows.
On January 17th, Cadee’s (Magnum’s sister) 5th birthday, we were able to meet and it was the first of all our meetings where Magnum was able to come out of his car seat and just be held by Tashina. It was also the first time Tashina has been able to hug and touch Remi (Magnum’s brother) and Cadee since October 24th. PRAISE GOD!! Now, I have to take a moment here, bear with me, to describe Cadee. Cadee is a truly loving and grateful little girl. Her heart would leap for joy and thanks if you gave her a wadded up piece of paper and said I made this for you. She woke up, put on her princess dress (literally) and her sparkly highheels and a bit of “makeup”😉and all this to do errands for her bday. Having no idea she was meeting us. The beam on her face when she realized she was able to see Mag (her name for Magnum) and mom was as bright as the sun.
What a blessing that day was, though Magnum could not yet get down and, of course, we are all masked up around each other….the power of a hug to a mother’s heart is immeasurable!! PRAISE GOD!
Unfortunately, because of Magnum’s isolation and potential risk to him we were unable to attend the service for Dad (Magnum’s great-grandpa and Bob’s dad). BUT GOD, in His infinite provision allowed Bob and I to meet in Dixon and watch the livestream of Dad’s beautiful service on January 28th. The family back home was able to as well and Tashina at Family House. PRAISE GOD!!
On January 31, we all met to celebrate Jacob’s 17th bday. Magnum was finally able to get down and walk around (with mask on and not touching). We all did the “Hokey Pokey” and rejoiced in yet another small step in this process. PRAISE GOD!!
GOD’s timing is perfect and we stand in awe of it.
As we awaited test results for Chimerism done on the 27th, we also were being told they would do another lymphocyte study. If you remember, this study was done when Magnum was experiencing fevers from an “unknown” source. They do this study to see how many “killer T-cells” there are. Normally, they see a few and not organized at that point. BUT GOD…Magnum had more than enough and they were already organizing in his body. So, at this point, they will run that study again as a two part protocol to go home off isolation
YES, I SAID “TO GO HOME, OFF ISOLATION”!!! Is anyone’s mouth dropping open right now? Mine sure was when that was said. NEVER had anything been said about this early being able to go home. BUT GOD!!!😘.
On February 10, the Chimerism test came back and the lymphocyte study was done. Now the results, finally, show what the doctors had been looking for before, which was a drop from the 98% donor to more blended. Magnum was now at 72% donor. This reduces even more his chances of GVHD in the chronic phase which is after 100 days. PRAISE GOD!!
If you remember, the doctor said he would not get hair back for about 6 months and the Chimerism percentage would drop due to the “Campath” chemo. Campath exudes from your system for up to 18 months after dosing. We are thinking that his EXTREME dry skin is from the Campath coming out as he goes through bouts of that. But, boy, his hair is still growing strong!!
That afternoon we were informed the lymphocyte study was already back. In order to come off isolation there needs to be over two hundred CD4 T-cells. That is first protocol. Then, those CD4 T-cells have to be functioning at 50% or better. They determine this through a functionality test. MAGNUM PASSED FIRST PROTOCOL WITH 238 CD4 T-CELLS! PRAISE GOD!!
On February 17th, the functionality test was performed. This test we are told takes 7-10 days. They have also started tapering the Tachrolimus medication. Once that is done, he will come off all meds (8 of them, which he has learned to do himself) and can get his BROVIAC out. His last dose of Tachrolimus should be April 13th. So we wait with eager anticipation. I cannot even believe it!!! BUT GOD AND PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!
Magnum is a champ at going to the hospital. No PTSD of that anymore. He struggles at night with rolling (hooked to line of magnesium infused over 8 hours), itching, and perhaps PTSD as he always needs reassured mommy is there. And now having gotten down to see his siblings, it is hard, as he continually says: “miss Remi, miss Cadee”. (Playing with grandma and mommy are not the same as your siblings). But other than that and his dry skin…you would never know what he has been through. (And he continues to bless those here at Family House. They tell us all the time.) GOD IS GOOD!!
On Valentine’s Day, we met family and were able to eat together with masks off and celebrate 100 day marker for Magnum also. WHAT A BLESSING!!
Though we now are required to be swabbed for COVID every week, we find things to laugh about, like every sunny day we are hosted by “Batman” (see pictures below). And convos we should not have…..like when we are doing a drive for pleasure along the highway to Santa Cruz (anyone know this road?) and I say to Tashina, “Wouldn’t it be a blast to have a Mini Cooper and no traffic on this road and it wide open just for you?” Tashina looks over at me with a look of an upset stomach and says, “NO MOM NO!” 🤷♀️🤣
PRAYER REQUESTS:
• Pray for all the oral meds he has to take, as he is throwing up some at times.
• Pray for lymphocyte functionality test.
• Pray Magnum suffers little to no GVHD….we are out of acute GVHD time and have now entered chronic GVHD possibilities.
• Pray for Magnum’s restless nights.
• Pray for continued energy and strength for us all (family in SF and family in El Dorado county) as we meet this battle. Some of this has gotten harder.
• Pray for the other families in Family House……we have shared that we will pray for each of these and reach out to you all as well. We have no update on baby Dylan and mama Maria. Please just pray for them as you remember. Little Ryland, the 17 month old with AML and ALL leukemia IS IN REMISSION. He had an infection in his line and it had to be replaced but he is back at Family House now. The 18 year old, Anthony, is back. He has had a very tough road and has struggled with some depression. PLEASE pray for him and his family. He just wants to be back playing soccer. He accomplished finishing high school all the while fighting this and almost losing his life twice. Amazing young man!!
• Pray for Nylada as you think of it…we may never know.
• Pray that we show JESUS to all we meet.
• Pray that GOD is glorified in all!
• Pray that GOD CONTINUES to show HIMSELF to all
PRAISES:
• PRAISE GOD we have made each milestone.
• PRAISE GOD we have been able to see the family and have a little less restriction on that.
• PRAISE GOD for each test result so far…BUT GOD!!!
• Praises for EACH of you and your faithful love, prayers, and support.
• Praises for Magnum’s joy.
• Praises for Family House and staff
• Praises that GOD holds Magnum in His hands
THANK YOU ALL FOR YOUR LOVE, PRAYERS AND SUPPORT! It has meant so much to have your encouragements at this time, while we are away from each other. May GOD bless you all and keep you in His palm.
WE LOVE YOU ALL!!
Magnum and Family
♥️
EPHESIANS 3:14-21
“For this reason I bow my knees before the Father, from whom every family in heaven and on earth is named, that according to the riches of his glory he may grant you to be strengthened with power through His spirit in your inner being, so that Christ may dwell in your hearts through faith—that you being rooted, and grounded in love, may have strength to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of GOD. Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.”
PICTURES:
• Magnum taking his meds himself
• Do you see “Batman”…he visits on sunny days?
• Magnum first time getting to stand on ground around family.
• Valentine’s Day celebrating 100 day milestone (actually got to eat PBJ sandwiches together) with Mommy, Magnum, Cadee, and Remi.
Update #26 (January 12, 2021)
Dearest Prayer Warriors,
Let me start by apologizing for delays in updates, texts, emails, etc.. I thank the LORD for your patience when I am not answering for awhile. I am sorry! Please bear with me as my technology brain has exploded…..and I am not good at it or being tied to it. With our households separated there are volumes more on texting, bulk emails, and bountiful FaceTime and phone call times……I LOVE THE CONNECTION…..but am slow to always get back to each one timely. Thank each of you for your grace on this. I will respond to each as I can.
Though December was such a blessing in receiving the news of Magnum’s cure from DBA, we also were faced with the sadness of losing Magnum’s great-grandfather, Bob Sr. (Grandpa Bob’s dad) on December 30. We are sadden by the distance and separation of family at this time…..but are REJOICING IN GRANDPA GOING INTO THE ARMS OF JESUS AND HEARING WELL DONE! Please pray for all the family at this time.
On December 24, SFPD did a parade with all their cars, lights on driving around Family House. We stood on the street corner watching and waving…Magnum was in awe!! They also had decorations out back of Family House, so we walked through those as well.
Magnum continues to be his joy boy self!! Being closed in much of the time is sometimes difficult. He LOVES to go for walks and can make it to the car walking and make it back home now. He runs everywhere we let him….which is pretty controlled. At night he loves to help clean down each toy and wipe all furniture, etc.
I have only twice seen T-REX come out since being here. Go figure, both times he wasn’t getting his way and was upset at grandma. I have to admit, I struggle with not laughing out loud as he rises slowly up and tries to intimidate me…..it is priceless. 😉 I still think it was genius how GOD instilled that in him to use as his voice at the hospital. Only now….it’s with grandma….doesn’t have the same effect….he is learning. 🤣
We currently are on a schedule which draws labs 2-3 times a week. He needs neupogen (the “boost” med) twice a week right now. This either send him into a high high (😃) or the crankiest low (😬).
Days are ordinary…..and I am often reminded of finding the magic in ordinary days. We get up, eat breakfast, pace/walk/play/school, eat lunch, pace/walk/play/school, take our bath, eat dinner, watch a show or movie to wind down, hook up IV, go to bed (throw in cooking, cleaning, and laundry)….that is our days. Unless, it is a clinic or day out for meds. Then we do our errands for food and necessities at those times. We have worked our way up to the 6 block walk to drug store/hospital. We can only do this on weekend right now though as construction in the area keeps us on streets with no excessive dust and such.
Our room sets on the 5th floor and right out our windows across the street is the police station. And one block to the left, looking out is the fire station. Plenty of “woo-woos” for Magnum all the time!! We even had another fire drill ourselves. Thankfully, Tashina and Magnum were at clinic.
Magnum’s numbers have remained low and we have been at times concerned at how low. However, we continue to look at him, (AND HE LOOKS GOOD) and rest in the process GOD is doing in his little body. The last two weeks, Magnum has tugged more at his BROVIAC dressing. We are trying to figure out why and are hoping for some answers in clinic tomorrow. Multiple bandage changes, as each time it must be sterilized and replaced, is causing skin to become irritated. When Magnum goes in clinic, some of the nurses come to see him even if they are not his nurse that day….they just love his spirit of joy and says he handles his dressing changes well for a two year old. He is getting over his PTSD too. He takes going into the hospital better now and may cry a couple seconds from “pokes”, but then is distracted by other things around him.
We are hoping when his numbers increase to be able to drive and take longer walks in less crowded areas, but still be outside.
PRAYER REQUESTS:
• Pray for all the family with the loss of Magnum’s great-grandfather (especially for his great-grandmother)
• Pray for all the oral meds he has to take, as he is throwing up some at times and will take Zofran to help with nausea.
• Tacrolimus level stays up and his Magnesium level as he switches Magnesium to oral also.
• Pray for Chimerism test which was taken again last week.
• Pray Magnum suffers little to no GVHD, or other complications.
• Pray for no rejection as the next benchmark for this is 2/14/2021……100 days…..VALENTINE’S DAY♥️
• Pray for continued energy and strength for us all (family in SF and family in El Dorado county) as we meet this battle
• Pray for the other families in Family House……we have shared that we will pray for each of these and reach out to you all as well. (Dylan (mama Maria) born December 17 whose diaphragm was not formed and all his organs pushed into chest cavity and displaced his heart. Ryland, 17 months old (mama Remy….is that not GOD!!!) with leukemia. Did BMT and is waiting to see if leukemia is in remission. Also the 18 year that was in with Magnum (he had to go back to hospital because of his liver).
• Pray for Nylada.
• Pray that we may shine a light that others will see….that is Jesus
• Pray that GOD is glorified in all!
• Pray that GOD CONTINUES to show HIMSELF to all
PRAISES:
• PRAISES THAT GREAT GRANDPA IS WITH JESUS!♥️
• Praises for technology….as we live right now dependent on it.
• Praises for each of you and your faithful love, prayers, and support.
• Praises for Magnum’s joy
• Praises for Family House and staff
• Praises Magnum being able to play and continued progress
• Praises that GOD holds Magnum in His hands
THANK YOU ALL FOR YOUR LOVE, PRAYERS AND SUPPORT! THANK YOU FOR REACHING OUT AND FOR YOUR ENCOURAGEMENTS. Each of you is near and dear and we smile as we read your messages. May the LORD richly bless each of you throughout this New Year!
WE LOVE YOU ALL!!
Magnum and Family
♥️
Pics:
Outside Family House on Christmas Eve
Playing with Grandma’s glasses
On a walk with Mama by the blue seal
Update #25 (December 24, 2020)
MERRY CHRISTMAS EVERYONE!!
Dearest Prayer Warriors,
What an amazing time of the year! Though many things are not the same this year, we know GOD IS the same, has always been the same, and will always be the same….HEBREWS 13:8. This we can truly rejoice in. No matter what other things are going on or not going on in our lives…..GOD IS OUR CONSTANT….and for that we can be thankful.
Our last update was on December 8th.
On December 9th the doctors said that barring any unforeseen events, Magnum’s DBA HAS BEEN CURED. “We do not anticipate or foresee him needing anymore blood transfusions or platelets.” THANK YOU JESUS!!!! BEST GIFT THIS YEAR HANDS DOWN FOR US ALL!
We also received the results of the first Chimerism test (to show how much is donor and how much is Magnum in the bone marrow.) We had wanted 100% red blood cells and platelets…..THAT WAS EXACTLY WHAT GOD GAVE!!! We had also wanted lymphocytes between 50-80%….they were at 99%. Now this does present more risk for GVHD, BUT GOD! So we rest in Him, as He has carried EVERYTHING with Magnum so far. When we have not known, BUT GOD…..HE KNOWS! When we have wondered, BUT GOD….HE HAS KNOWN! When Magnum has been at his sickest, BUT GOD…..HE HAS HELD HIM! So we rest in, BUT GOD….HE GOES ON HEALING MAGNUM. In fact, GOD is healing Magnum miraculously….he should not have had hair coming back in until between February and May (because of chemo). The doctors are amazed! I’m sending a picture of his “peach fuzz”, that only Sunday felt like stubble on a man’s face. UNBELIEVABLE….BUT GOD!!!
On December 10, MAGNUM WAS DISCHARGED from the hospital and came to Family House……PRAISE THE LORD!!! I cannot begin to tell you the wonder on his face as he was able to get in a car seat and go. His request was to go to ocean….that one we cannot do yet. However, many requests we are able to do, like donuts, pizza, “cackles” (crackers)…and we do!!
Family House is an incredible, friendly, hospitable, as-clean-as-can-be place. It is like a hotel, only each of the 5 floors have two fully equipped kitchens at each end of the halls with maybe 8-10 rooms around them. There are mini refrigerators and cabinets numbered for every room. There are 2-3 laundry facilities on each floor. Housekeeping is around the clock wiping down everything….walls, floors, doors, elevators, etc. I cannot picture a cleaner environment to have to recuperate from a BMT in. We, too, are constantly cleaning in the room, for his environment must be kept clean. He cannot be on the floor and must be wiped down or changed if he falls or touches the floor. He has no immunity at this time to protect or heal him. The first week was tiring. Learning a routine and what this next stage will entail. This next stage is from 1-3 months long usually. Yes, we still have a journey to walk…..BUT GOD has paved the way, so we embrace the adventure.
Now, allow me to share what the beginning of this next phase has been:
The first week…..we wiped the rooms down (EXTREME CLEANING HERE….should have stock in Clorox wipes 😉) that all adjoin and settled in (a queen bed in one area, a couch in the middle area with a bathroom off it, and two twin beds in the last area), Magnum walked and ran everywhere around the room. His little body was so unstable, but he was just in heaven getting to move. He brought each toy out and he laughed and giggled and sang. (It was difficult to look at his little body at first so emaciated in his shoulder blades and his skin was almost black under his arms, around his neck and between his legs from chemo,) I will admit I had to fight the tears in the room that first night. However, you cannot be around this “joy boy” and be in tears long…he just makes you laugh, smile and spread his joy everywhere. Every night he would in his little cute way ask for “piza” so nights were frozen pizza for him and mornings donuts. He wanted chips after chips after chips….which he had in the hospital unlike the donuts and pizza…..so we couldn’t figure out why. Then we realized he had come off so much sodium chloride (IV) for over a month……it was all making since. He is craving salt!!! They wanted him to gain weight and lose the diarrhea, so it was just fine to watch him chow, and I mean CHOW on those.
Our car is parked 3 1/2 blocks away between the hospital and the Family House when we go to hospital appts or errands. Magnum is not allowed to go in anywhere except into his appts. He is basically covered from head to toe. He loves to walk, but tires quickly. Made it almost half the way to car in this first week.
Every night he is hooked up to his BROVIAC magnesium by Tashina and 1-2 times a week she draws labs and send them to hospital. He also has 7 meds to take orally and at times throws them up. But he is doing well at keeping the GVHD meds at good levels.
Much of this week was learning what the new routine/normal would be.
On Monday, December 14, we were all evacuated as someone on one of the floors burned food…..HIGHLY SENSITIVE ALARMS!! Three fire trucks rolled to the scene. Highly stressful situation when you have at least 30 families that are immunity compromised having to be evacuated in wheelchairs, with oxygen, etc. However, Magnum thought it was all for him, as every “woo-woo” (fire truck) is for him in his mind. HE LOVES THEM! So, he sat mesmerized and trying to wave to each firefighter as they walked into his view. Not sure, if it was the stress for them or just the difference between our wonderful firefighters in El Dorado county and city firefighters….but only one said bye as they were leaving. BUT DO NOT DISMAY…..it hasn’t changed Magnum’s perspective of firefighters. His heart was won in El Dorado county….he is “woo-woo” minded still. THANK GOD FOR FIREFIGHTERS AND THEIR HEARTS TO SERVE A SMALL CHILD’S HEART!!
That same day, Magnum had to go into the clinic for a neupogen shot (this pushes the cells out of the bone marrow to make more and boosts his counts). Unfortunately, this is a shot and is not given in BROVIAC unless he is already in for an infusion of meds. Magnum does have PTSD with the hospital and pokes (shots), so it is traumatic for him still. As is some nights, when he reaches for mama. THANK GOD FOR NUMBING CREAM!! Put it on 30 minutes before a poke….and VIOLA, no pain….though the thought of the pain can still make it traumatic. Time heals!! He has even allowed me to comforted him to sleep…though it didn’t start out comforting to him 😉. That was huge and helpful for Tashina who has carried all the burden til now. He is slowly coming around.
Every week is two hospital visits, one clinical with doctor and one usually for that shot. This first week was three hospital visits. Wednesday we did clinic and Friday another shot.
Second week, we have played, danced, sang, walked, talked and watched every “woo-woo” we could at our window (and believe me there are a LOT)…..WHAT JOY!!!! He is already so much stronger and has gained weight and resolved diarrhea issues…it is AMAZING!
I thought I would make a positive out of his two year old “no” comments by kissing him on the head ever time he said, “no”. Grandma blew it…..he started saying “no” more just to get me to kiss his head over and over. So, this week, grandma changed it to him saying his name….now he repeats his name over and over….the boy LOVES KISSES!!😃
I (grandma) will remain down here at Family House for now as Aunt Talia’s and grandpa’s jobs have had more COVID exposures. To be safe for Magnum, we will wait for that to clear, trusting GOD’S timing.
Christmas will be different this year, yes! But still WONDERFUL!! You see, Magnum doesn’t even know the difference as most kids here do. And the rest of the family will be together on Christmas Day. And the whole fam plans to celebrate in the spring….Christ’s birth, right?
On top of all that, which is a blessing in itself….we have an opportunity to bless others here and share a testimony for Him this season we are here….and believe me, MAGNUM HAS ALREADY IMPACTED FAMILY HOUSE!! We say, “thank the LORD” and the response is YES!! The staff comments on his joy! OUR GREAT GOD IS AT WORK!!
PRAYER REQUESTS:
• Pray for all the oral meds he has to take, as he is throwing up some at times and will take Zofran to help with nausea.
• Tacrolimus level stays up.
• Pray Magnum suffers little to no GVHD, or other complications.
• Pray for no rejection as the next benchmark for this is 2/14/2021……100 days…..VALENTINE’S DAY♥️
• Pray for continued energy and strength for us all (family in SF and family in El Dorado county) as we meet this battle and the COVID exposure
• Pray for the other families in Family House (two we know of were in BMT unit with Magnum as Tashina saw them)
• Pray for Nylada.
• Pray that we may shine a light that others will see….that is Jesus
• Pray that GOD is glorified in all!
• Pray that GOD CONTINUES to show HIMSELF to all
PRAISES:
• PRAISE THE FATHER WHO SAW FIT IN HIS GREAT MERCY TO CURE OUR SWEET LITTLE “JOY BOY” MAGNUM!!!!
• For our faithful prayer Warriors!
• For Magnum’s joy
• For the chimerism tests, though it isn’t what the doctors want to see exactly….BUT GOD!
• For the great healing which is ALREADY BRINGING IN HAIR! (You have to see the pic)
• For Family House and staff
• For Magnum’s appetite and weight gain and diarrhea being resolved
• For Magnum being able to play and get around as every little boy should
• For Tashina being able to do all the medical aspects needed
• For firefighters
• For numbing cream
• That GOD holds Magnum in his hand
• MAGNUM LOOKS LIKE HIMSELF AGAIN!
• For Christmas and our Savior’s birth.
We love you all and thank you for your prayers and support. Merry Christmas to each of you and May the love and joy of JESUS CHRIST fill your hearts this season. ♥️
Love,
Magnum and Family
♥️
The pics show:
Fire alarm day
Hair coming in
Giving you all a thumbs up for Christmas!
Update #24 (December 8, 2020)
Dear Prayer Warriors,
I don’t even know where to begin as I write this update……
Jeremiah 29:11…For I know the thoughts that I think toward you (Magnum), says the LORD, thoughts of peace and not of evil, to give you (Magnum) a future and a hope. We have had a roller coaster week. Mountains of PRAISE and valleys of the unknown. Resting in GOD is the only given in all this.
Our last update was on 11/21 and many of you expressed that you did not even know what to think or say after reading it. It was unclear as to whether he was better or not. If you felt this, you were not alone AS THAT WAS EXACTLY WHERE WE ALL WERE. We were holding onto to every PRAISE tightly and striving to understand what really needed to reach out in PRAYER REQUESTS and what was normal for the situation.
11/22….I met family half way and while we ate together received notice from Tashina that doctor okayed me going home…….Magnum was on track. The VOD meds were working and he was getting many platelet transfusions but doing well……so I went home.
11/23…..Throughout this process a medicine called Neupogen is given. It is given during chemo to express all stem cells. Then it is given when new stem cells are in to make them flood the body. It is given every week and sometimes twice a week until body is producing enough on its own. The downside in that is that it makes you feel punky for about 24 hours.
Magnum has had 17 blood transfusions in 1 1/2 years….and since BMT 17 platelet transfusions.
11/24…..Magnum is off one BP med and one diuretic. They give him an eye exam as CMV can cause blindness…..results are PERFECT! They are talking of doing a T-cell infusion if the CMV is not better. (T-cells and B-cells are the last cells to come in after BMT. They usually take 6-9 months and are the organizers to fight in the blood against flus, colds, viruses, etc.). The doctor orders a lymphocyte test to see how many NK cells (natural killer) and CD8 cells (killer T-cells) Magnum has at this point to fight.
AMAZING RESULTS: 16% were NK cells and 72% CD8 cells. The doctor said we usually do not see this at this stage. Magnum’s cells are organizing and fighting the CMV on their own. BUT GOD…..PRAISE THE LORD!!
11/26….THANKSGIVING….more meds off and Tacrolimus (the main med for GVHD) changed to oral. This med is to be kept in a range of 5-10 after BMT. Magnum is up walking more. This is his second day of above .500 neutrophils. (3 days at .500 or above shows 100% bone marrow engraftment).
11/27…..100% ENGRAFTMENT TODAY!!!
PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!
11/28…..Magnum has fever and is dry-heaving. They put him on antibiotics and run cultures.
11/29……Magnum still has fever. Still antibiotics. Had respiratory panel and COVID swabs.
11/30…..Magnum has fevers of 101-103 all day. Has diarrhea. There is swelling and concerned for him being able to urinate. He is at 50% IV nutrition and still eating somewhat. No cultures are coming back saying anything. Testing for C-Diff. Magnum has lots of petichial bruising from fevers and low platelets (fevers chomped through platelets quickly)…..so more platelet transfusions. CMV tests come back lower….PRAISE THE LORD!!
12/1…..Magnum has 104 fever and throwing up at night, 103 in the afternoon and 101 fever in the evening. Doctors are worried because they cannot find the source. Tacrolimus (GVHD med) level is too low. They do a CT scan on him. Ct scan is clear. C-Diff culture is clear. All other cultures clear. CMV down. He has some bumps on his shoulder they will look at tomorrow.
12/2…..Magnum has 104 fever at night, 102 in the morning and 100 in the evening. MRI is done in sinuses (not allowed to eat and had to be sedated). They put him on another med that they hoped would help boost the Tacrolimus level (still too low). The doctors biopsy the bump on his shoulder and he now has his first stitches. By the end of this day with doctors baffled (and that is not comforting) they say they will start pulling meds to see if it is a med reaction. (They have given a med to boost the Tacrolimus level….we believe this is the cause though doctors are not acknowledging this…would be human error not natural….and who cares as long as we help Magnum. Tashina has many convos with head of BMT, he is very impressed with her knowledge and ability to handle, research, articulate, and come up with theories. He agrees they will look at Tacrolimus if the levels drop.
12/3……Magnum gets blood transfusion today. VOD meds stopped. No fevers…….no answers…….BUT GOD!!!! WE PRAISE HIM FOR HE KNOWS IF NO ELSE EVER DOES!!
12/4……IV nutrition turned off…he is eating fully on his own, like a champ (they normally turn it off and place NG tube for a bit)……BUT GOD!!
12/5…..First day without being tethered to a pole….PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!
12/6…..This was my birthday and the best gift that day was when I delivered laundry/supplies to Magnum and Tashina and saw his smiling eyes full of joy again! It doesn’t get any better than that!!
12/7…..Checking off every detail to be discharged. Looking at discharge on Thursday, December 10th.
Preliminary biopsy…..nothing. CMV…..not detected (must have 2 not detected to call it dormant). Still reviewing the Tacrolimus issue but his numbers have stayed between 5-10 which is where they need to be.
Chimerism test was done to see how his body has taken to stem cells from donor. Ideally we want to see….100% red blood cells and 100% platelets with 50-80% lymphocytes.
We pray this update has made clearer where Magnum is. We don’t believe the term roller coaster does justice to the last three weeks….more like a merry-go-round that has spun for so long that when you get off your head is still spinning. Finally, we ALL now feel clearer!
We thank each of you for your prayers. For being there as we have reached out each time with more urgent prayer requests. For your encouragements to our hearts as you share with us. The Bible says: Psalm 3:3 “But You, O LORD, are a shield for me, My glory and the One who lifts up my head.” The LORD has used not only His Word but each of you to lift us up….AND WE TRULY, HUMBLY THANK YOU ALL!!
PRAYER REQUESTS:
• Pray for all the oral meds he has to take, as he is throwing up some at times and will take Zofran to help with nausea.
• Tacrolimus level stays up.
• Pray Chimerism test comes back with good results.
• Pray Magnum suffers little to no GVHD, or other complications.
• Pray for no rejection as the next benchmark for this is 2/14/2021……100 days…..VALENTINE’S DAY♥️
• Pray for the “new” needs Magnum will have and how we will recognize and handle those in Family House.
• Pray for Tashina as we gear up to go to Family House and all the new needs.
• Pray for continued energy and strength for us all as we meet this battle.
• Pray for those In this unit awaiting transplants or in transplant.
• Pray for Nylada.
• Pray that we may shine a light that others will see….that is Jesus
• Pray that GOD is glorified in all!
• Pray that GOD CONTINUES to show HIMSELF to all
PRAISES:
• Magnum tries to smile and have joy despite ALL he has been out through.
• MAGNUM IS ENGRAFTED!!
• Mucositis is gone.
• IV nutrition off and eating on his own.
• No NG tube needed
• All cultures, labs, CT scan, MRI, and biopsy are clear as of now.
• CMV and VOD are controlled as of now.
• Magnum’s cells are already organizing to fight, which is not normal for this time period….BUT GOD!
• No more fevers.
• Magnum has been free of IV pole during the day.
• Magnum is on his way to discharge.
• The head BMT respects/hears Tashina.
• Magnum never stopped eating totally throughout this whole process, which is unheard of….BUT GOD!
• That GOD holds Magnum in his hand
• MAGNUM LOOKS LIKE HIMSELF AGAIN!
The pics show:
1…..Magnum just not feeling well and trying to go to sleep.
2…..Magnum in CT-scan
3…..Magnum on his way to MRI
4…..The petichial bruising….Magnum still trying to smile.
5…..Magnum yesterday showing his muscles with his superheroes.
Update #23 (November 21, 2020)
Dear Prayer Warriors,
THANK YOU THANK YOU THANK YOU!!!
May each of you be blessed with the same measure of blessings that the LORD has showered down on us through your prayers.
It has been a rough few days for Magnum and Tashina. We believe we prepare as best we can for the events the LORD leads us to in this life, but we are human, weak at times, tired at times and just plain puny thinkers at times. BUT GOD…..shows us grace upon grace, mercy upon mercy, and love unending!!!!
On Tuesday and Wednesday, Magnum’s fluid levels went up more which is sign of more VOD. His eating deteriorated and he was not drinking much either. His mouth sores were still hurting and he was on round the clock pain meds. The mucositis had gone into his stomach lining also. So now he was not just spitting blood from his mouth, but was actually throwing up blood as well. His platelet count, which is last to drop, had bottomed out. With the team that was on duty, his platelets had dropped below what even his doctor wanted. At this time they had to play catch up in giving him platelets. He ended up with 8 platelet transfusions in one day. Unfortunately, when you give platelets you give lots of fluid. This fluid combined with all the other fluid intakes from meds and such was making the VOD worse. Now we realized going into this, and even from where we were now, that VOD is the number one reason for death in transplants. At this point, the enemy was truly working overtime, as one of the “fellow” (a doctor under attending doctors) doctors became very aggressive with Tashina about the VOD even contradicting the attending doctors. Tashina watches every stat, every lab, every med, everything and Magnum’s doctor knows this about who Tashina is. But she is also a mama and was a tired one that did not need that. BUT GOD….. allowed an amazing conversation with Magnum’s doctor that returned a blessing to that “fellow doctor”. We still had to deal with the “attacks from tired” that make EVERYTHING WORSE. Magnum does have a slight case of VOD. Yesterday, they were able to raise his platelets up enough to start the medicine for it. If given before the mucositis is handled and platelets are up, his bleeding could be deadly. Yesterday, they started VOD med and started neupogen (helps push new cells out). Unfortunately, the neupogen makes you feel sick. As I delivered laundry and supplies through the door I saw Magnum just lying on the bed. This was the sickest I have seen him. They had him doing platelet transfusions and had a hemoglobin transfusion yesterday as well. All the fluids had started to make his belly distend. They tried humidifier to help dry up mucus. His oxygen level was low as well. WE NEEDED PRAYER AGAIN……
BUT GOD……
As I met Tashina at the door, carefully wiping all items down before handing them in, she started crying. “Now they want to limit his intake by mouth, because of the fluid. But, mom, he drinks SO MUCH and that is what he always has done.” I cannot hug her, I cannot hold her, I can only hope she sees the depth of understanding in my eyes and my voice. She steps back and I look in the door…….
THERE IS MIGHTY MAGNUM SITTING AT HIS LITTLE TABLE TELLING ME NO and then laying his head down as the sun streams in on him. BEAUTIFUL HUGE WINDOW FULL OF SUN WHICH GOD ALLOWS FOR MAGNUM TO SIT AND LAY IN AND LOWERS HIS BILIRUBIN (one of the liver values)…PRAISE THE LORD!!!!
In Proverbs 4:25, it says:
“Let your eyes look straight ahead,
And your eyelids look right before you.”
Sometimes we see so much, too much, and GOD wants us to just stop. Just listen. Just be still. Just focus……right before you.
No matter what was being said (and it was again the fellow doctor), MAGNUM LOOKED BETTER, MAGNUM WAS UP, MAGNUM WAS TELLING GRANDMA NO…..PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!! Tashina rested in that the rest of the day. The head of all the bone marrow unit came by and Tashina was able to talk to him. He was wonderful!!! Tashina said, “He just came in and sat down and we chatted like family. He said HE KNOWS MAGNUM IS ENGRAFTING.” ……PRAISE THE
LORD!!!
YOUR PRAYERS DEAR WARRIORS AT WORK! THANK YOU FROM THE BOTTOM OF OUR HEARTS!!
PRAYER REQUESTS:
• Pray for the end of the mucositis in his tummy, the CMV, and the VOD
• Pray for Magnum’s high blood pressure (it is from one of the GVHD meds)
• Pray that any other side effects are minimal to none especially with this new med for VOD
• Pray Magnum’s oxygen saturation stays up
• Pray Magnum suffers little to no GVHD or other complications.
• Pray for no rejection (though rejection is becoming more unlikely every day)
• Pray for those In this unit awaiting transplants or in transplant….3 had to go to ICU
• Pray for all meds to be balanced with fluid intake too, as he has to take so many
• Pray for Nylada.
• Pray for Tashina to actually get rest now and have GOD’S peace in all Magnum’s sufferings and pain.
• Pray for continued energy and strength for us all as we meet this battle.
• Pray that we may shine a light that others will see….that is Jesus
• Pray that GOD is glorified in all!
• Pray that GOD shows HIMSELF to all
PRAISES:
• Magnum is engrafting!
• Magnum is up again and smiling and saying NO as a typical two year old
• That they were able to get Magnum’s platelet levels up and control bleeding to give VOD medicine
• That his fluid levels have come down some
• Magnum’s mouth is better
• That Tashina is now surrounded by doctors who are encouraging
• That Tashina can rest tonight and is focused straight ahead
• For the sunshine in SF (gotta find something😉) that helps liver levels
• Magnum looks better
• The doctor just told Tashina tonight, it is amazing he is eating anything by mouth at this point after transplant
• That GOD holds Magnum in his hand
Again, I cannot put all pics on update, so be sure to check out website for transplant pics and others. This was our week in pics: his mouth sores (yet still trying to smile), him feeling worse, and today!!!
THANK YOU ALL FOR BEING THERE WHEN WE NEED PRAYER REQUESTS MET….IT IS SO COMFORTING TO OUR HEARTS.
THANK EACH OF YOU DEARLY FOR PRAYING US THROUGH THIS! WE LOVE YOU ALL!!
Love,
Magnum and Fam
♥️
“My part is to search for His treasures and stay open to His filling. His part is to give me understanding and wisdom.”…..Unknown
Matthew 6:33
But seek first the kingdom of GOD and His righteousness, and all these things shall be added to you.
Update #22 (November 16, 2020)
Dearest Prayer Warriors,
Everything has moved so fast. It is hard to believe we are at DAY 10 on the road to recovery after transplant. This has been my first opportunity to update. God allowed me to go in with Magnum everyday last week from Sunday to Friday. Everyday I was able to do “school” (as Magnum calls it), play and just have an amazing one-on-one time with him while Tashina went back to Family House and was able to rest and shut off the beeps and never ending imposing that comes with hospitals. Everyday we counted bikes outside the window and watched when the crane moved heavy loads. Sometimes we just read in the sunshine of the window. One day it rained so we counted umbrellas, and still bikes too. We danced, jumped, walked around and even wrestled a bit…being careful of the many lines he has attached to him. WHAT A BLESSING!!! The doctors and nurses would say, “WOW, he is eating better than all the patients in all the other rooms.” and “he will get sick, he will have mucositis”, etc. We kept thinking, BUT GOD…and he stayed full of vim and vigor all week.
Many times the doctors would come in while I was there. It was pretty amazing to watch this little two year old, who does not have many words, communicate clearly what he felt and meant. Magnum was never a huge dinosaur kiddo, until the hospital. He recognized T-REX is the formidable one and he used that to EVERYONE WHO CAME IN. Most kids at his age scream and cry when procedures are done or when they are frightened, etc. I remember Tashina in the hospital near Magnum’s age and every time someone came in she started to cry. That is typical because they don’t have voices and words. Well, Magnum, in his amazing intelligence the Lord gave him, does not cry or scream. He simply rises up saying, “T-REX ME” in a low voice. Then when he is fully up onto his feet he says, “T-REX ME, YOU GO WAY!”. At the beginning of the week he was doing this to everyone. Just a wee boy who does not know how to say this is frustrating and I am done…became the fierce T-REX to get his point across. However, sometime on Wednesday he started helping the nurses take his vitals more, giving fist bumps, giving high fives, actually interacting with them with his normal smiles and joy. He would say thank you and wave goodbye, even to the doctors. IT WAS GOOD!!!
We all slowly watched all his blood counts drop until we knew it would be my last time going in. We did not want any risks when he was neutropenic (no immunity). My last day was Friday. His numbers dropped significantly. Yesterday he received his first platelet transfusion and then another one again today. The platelets we are told are the last to drop and the last to rise. So I think we may be at the bottom. Now, how long we stay here until the new cells take over and start rising…this we do not know. PLEASE PRAY!!!
Saturday night, Magnum’s mouth sores became bad. He required some pain medication. Yesterday he did not want to eat as it was painful. Tashina tried to just keep him drinking and cold foods as he would tolerate…he didn’t! But he kept drinking, so for that we are thankful.
Today, Grandma took him supplies, treats and laundry. You know, even adults can only stand so much hospital food and they don’t have much of a kid menu. Still it’s hard to eat with sores in your mouth. Tomorrow he receives his last drug that is chemo like. It is for GVHD and it also causes mouth sores. PLEASE PRAY FOR MAGNUM TO GET THROUGH THIS LAST DOSE OF THIS MEDICATION AND HAVE LITTLE TO NO EFFECTS AND FOR HIS LITTLE MOUTH!!!
God’s timing is forever perfect!!! As I am writing this update, Magnum’s status has deteriorated somewhat. The CMV (cytomegalovirus) which both he and the donor were positive for has reactivated in his body. This explains his fatigue. They have changed the antiviral medication they are using to one that works for CMV. They also have suspicions that he had VOD (veno-occlusive disease). It is inflammation in the tiny blood vessels in his liver, as he needed two platelet transfusions in two days. We are waiting to hear on this and test results. All of these items have at one point been discussed with us. However, now we need the prayers for them!!! PLEASE PRAY FOR THESE TWO NEW PROBLEMS, THAT GOD WILL EASE MAGNUM’S PAIN AND END THESE ISSUES FOR HIM AND STOP ANY GVHD ISSUES.
God has and continues to shine His glory on this situation. Even as doctors don’t say miracles, there has been amazement as to how he has done up to now. I find myself many times with all that is going on in our family, the nation and the world, just saying, “SHOW THEM LORD, SHOW THEM WHO YOU ARE!!!”…for truly what could be greater than seeing clearly without blinders the truth of who our God is!!
PRAYER REQUESTS:
• For the mouth sores, CMV and possible VOD to go away quickly
• For Magnum’s high blood pressure (it is from one of the GVHD medications)
• That any other side effects are minimal to none
• That transplant takes and Magnum suffers little to no GVHD or other complications (We should see numbers rising by Friday, November 20th. If he does not have any numbers rising by the following Friday, November 27th, then it is considered rejection.)
• For those in this unit awaiting transplant or in transplant
• For all meds to be balanced as he has to take so many. (Especially pray for last dose of Methotrexate, a type of immuno suppressant and GVHD preventative tomorrow. This particular drug causes the mouth sore and can be inflaming the liver.)
• For Nylada
• For Tashina to rest and have God’s peace in all Magnum’s sufferings and pain
• For continued energy and strength for us all as we meet this battle
• That we may be a light for Jesus
• That God is glorified in all!
• That God shows Himself in amazing ways to ALL involved…no blinders.
PRAISES:
• Magnum did amazing last week and was clearly in the “BUT GOD” zone according to the medical team. THIS WE LOVE, for isn’t God the author of Science/Medicine
• Magnum has done amazing with the NG tube (isn’t it like us adults to make it bigger than it is? However, check out the picture taken of him right after the tube was placed…talk about feeling put out…the face says it all!)
• For being able to swap out so many days with Tashina last week
• For creating in Magnum a way to communicate without screaming and tears as that is hard on everyone
• That God holds Magnum in His hand
I cannot put all the pictures on the update, so be be sure to check out the website gallery for transplant pictures and others.
We love each of you and thank the Lord for your love, prayers and support in our lives. THE POWER OF YOUR PRAYERS NEVER GOES UNNOTICED. I HAVE SEEN STRENGTH COME FROM NO STRENGTH. I HAVE SEEN WHAT EVERYONE SAYS SHOULD BE THE “NORMAL” IN NEGATIVES, BUT GOD MADE IT POSITIVES. I HAVE SEEN WHEN A FAMILY IS FLYING APART INTO SO MANY PLACES TO BE WHERE EVERYONE IS NEEDED…BE SO TOGETHER, INFORMED, COMMITTED TO ONE ANOTHER AND STANDING STRONG ON THE FOUNDATION THAT IS OUR GOD.
THANK EACH OF YOU DEARLY FOR PRAYING FOR US THROUGH THIS! WE LOVE YOU ALL!
Love,
~ Magnum and Family ~
2 Samuel 22:29-34, 47
“For You are my lamp, O Lord; The Lord shall enlighten my darkness. For by You I can run against a troop; By my God I can leap over a wall. As for God, His way is perfect; The word of the Lord is proven; He is a shield to all who trust in Him. For who is God, except the Lord? And who is a rock, except our God? God is my strength and power, and He makes my way perfect. He makes my feet like the feet of deer, and sets me on my high places…The Lord lives! Blessed be my Rock! Let God be exalted, the Rock of my salvation!”
Update #21 (November 7, 2020)
Dearest Prayer Warriors,
CHEMO IS DONE! TRANSPLANT IS DONE! NOW THE HEALING!
Thank you for your love and prayers! Your consistent petitions to our Lord on Magnum’s behalf and ours have carried us through the highs and lows of this journey. We are thankful for each one of you.
Rest on Thursday went well, with Magnum in good spirits other than a few moments. On Friday, a team of people came in and we all gathered on ZOOM as a Chaplain prayed over the stem cells and Magnum was hooked up. It was a bit difficult as Magnum seems more wise now to lots of people being in his room. At one point, he stood in his bed stomping his foot and waving his arm saying, “NO, ME!”. In another moment he didn’t want to look at anyone and was wiping away tears with his head bowed. THAT WAS HARD!!! He had to remain in bed and be monitored throughout the whole process. We received word he was actually finished at 6:20 pm. PRAISE THE LORD!!!
What’s ahead? Now we sit in the nail-biting state. The next two weeks are when rejection could happen (it is possible after that, but unlikely). So that would be a milestone. Then to be 100% engrafted (which is usually 2-3 weeks). At that point, there are other markers they need to see before Magnum can come to Family House. Once at Family House, it is 2-3 months before the next milestones. then he enters regular isolation until his T and B cells come in and he has his full immunity. That usually comes in around 6-9 months. I continue to stand amazed at the end of every day when I FaceTime with Magnum and he still is smiling and doing so well. Yes, he has his moments, but God is lifting this little man up. God has always put joy in this little boy!!!
Today an NG tube will be placed as they are expecting him to get more sick. Mucositis from ears to bottom is possible as well as fevers and other situations including GVHD. Last night his head hurt and he was put on some pain medication. He is pulling at his ears this morning. PLEASE CONTINUE LIFTING MAGNUM UP IN PRAYER. THESE NEXT TWO WEEKS MAY BE VERY HARD ON HIM ACCORDING TO THE NORM…BUT GOD!!! We rest there!!!
PRAYER REQUESTS:
• For Magnum as he is struggling with the NG tube being in. It’s like the last straw.
• That side effects are minimal to none
• The transplant takes and Magnum suffers little to no GVHD or other complications
• Over the next two weeks for no rejection (as that is the main rejection window)
• For those in this unit awaiting transplants or in transplant
• For Nylada
• For Tashina to get some rest
• For my swapping out with Tashina on Sunday
• That we may be a light for Jesus
• That God is glorified in all!
PRAISES:
• Magnum is doing great so far
• Chemo is over
• Tashina is doing great
• God holds Magnum in His hand
• Grandma is in place if needed
THANK YOU ALL SO MUCH AGAIN FOR YOUR LOVE, PRAYERS AND SUPPORTING US WITH SUCH ENCOURAGEMENT!!!
We love you,
~ Magnum and Family ~
Update #20 (November 5, 2020)
DONE WITH CHEMO!!! PRAISE THE LORD!!!
Chemo is over (perhaps not the side effects) and now a day of rest, then transplant. We are astounded at Magnum;s continued joy to this point. The medical staff continues to use the word “resilient”, yet we know. We KNOW how GOD is in control and has this in His hands. For that we are ever eternally grateful.
THANK YOU ALL FOR YOUR LOVE AND PRAYERS. We don’t know what each step of this journey is to look like, but we KNOW our GOD had this and His peace continues as we were told Magnum woudl probably get sick on day two or three of chemo…and NOTHING! Four days of chemo and only diarrhea and the start of a mouth sore, which actually ended. Now rest!!!
We are now told tomorrow Magnum will start getting sicker and it will remain that way until he is engrafted, which could be weeks. BUT GOD is a bigger physician. He has chosen for Magnum what to allow or not. So we rest in Him and His will for Magnum’s life. Please continue to pray throughout this time. We love you all and thank you again!!!
PRAYER REQUESTS:
• Side effects are minimal to none
• Transplant takes and Magnum suffers little to no GVHD or other complications
• Over the next two weeks for no rejection (as that is the main rejection window)
• Over the hospital situation..as it is difficult
• For those in this unit awaiting transplants or in transplant
• For Nylada
• For Tashina to get some rest
• For my driving down tomorrow (Thursday) and swapping out with Tashina on Sunday
• That we may be a light for Jesus
• That God is glorified in all!!!
PRAISES:
• Magnum is doing great so far
• Chemo is over!
• Tashina will be able to come out for a bit this weekend
• The MASTER PHYSICIAN holds Magnum in His hand
I wish you all could experience what JOY Magnum has had so far even in the hospital. He is learning his ABC’s and sings them in operatic form. It is precious and just can’t help but make you smile. May the Lord bless each of you the way your prayers have blessed us. We love you all!
~ Magnum and Family ~
Psalm 121
“I lift my eyes to the mountains, where does my help come from? My help comes from the Lord, the Maker of heaven and earth. He will not let your foot slip he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep. The Lord watches over you, the Lord is your shade at your right hand; the sun will not harm you by day, nor the moon by night. The Lord will keep you from all harm, he will watch over your life; the Lord will watch over your coming and going now and forevermore.”
Update #19 (November 2, 2020)
Dearest Prayer Warriors,
THANK YOU, THANK YOU, THANK YOU!!! We have the greatest prayer team and we are ever grateful and indebted to each of you for your consistent love and prayers. WE HAVE MOVED FORWARD TOWARD TRANSPLANT!!!
Friday night and Saturday were hard as an infection was detected in Magnum’s Broviac. A culture was done and came back suspicious, so they asked for a more definitive answer in growing the culture more. However, they started him on an antibiotic. Yesterday he was down and out. It was difficult for Tashina to talk to everyone there, as there are many different aspects besides waiting for the 24 hour culture growth. They kept checking for fever. Magnum was punky and moving his head in a weird way which was a sign to Tashina and I at the beginning of the DBA diagnosis. It was difficult to think about going forward with chemo the next day (Sunday) while an infection was there, not knowing what it was and depleting ALL his ability to fight it off. The prayers helped so much. Helped us sleep. Helped us process questions. Helped us cling to the peace that is our foundation. THANK YOU AGAIN!
Tashina woke with her voice, her mama bear on and ready to ask, hear and decide what God would have for today. Magnum woke much better! His Broviac line looked better at the sire. He was his happy little self and up playing with magnets. The transplant team came in and Tashina had the difficult conversation. At the end of it, the team wanted to move ahead and Tashina felt good about it. His next two chemos were started at noon. The first one was one hour long. The second was three hours long. Then they took labs to formulate the next doses tomorrow (Monday). He was a little punky tonight and by tomorrow might start declining rapidly until after transplant. From here on in the outlook is grim days and Magnum’s decline until new bone marrow ingrafts. BUT GOD has a plan and can do anything, so there we rest.
PRAISES:
• Magnum seemed better and could move forward with transplant
• God covered every detail and has allowed Tashina the peace again in moving forward
• Magnum went through the first chemo conditioning so well. His energy levels were off the charts.
• Though Tashina has to do this alone, (due to COVID, which is extremely difficult), we are SO CONNECTED by technology and we can see, speak and counsel together all the time.
PRAYER REQUESTS:
• For Magnum’s side effects (especially mucositis) to be minimal to none
• That Tashina may continue in peace as she sees Magnum through this
• That Magnum will keep the NG tube in, which will be placed the day after transplant
• That Tashina can come out and rest (I head down on Thursday) at the family house while I swap out with her
• For an eternal perspective this week, not looking right or left, but eyes fixed on Jesus.
• Above all, God’s will be done
• That we glorify God where we are in each step
• For the homefront
MAY THE LORD RETURN BLESSINGS TO EACH OF YOU FOR YOUR GREAT LOVE AND PRAYERS FOR MAGNUM. MAY YOU FEEL AND KNOW HIM IN NEW AND WONDERFUL WAYS. WE LOVE YOU ALL!!!
We rest this week in Colossians 3:2 – “Set your mind on things above, not on things on the earth.”
All our love,
~ Magnum and Family ~
P.S. – Since I did not get this sent/posted last night, this morning Magnum has declined. He is getting a transfusion as his hemoglobin is already dropped to 7.9. PLEASE CONTINUE TO PRAY BOTH MAGNUM AND TASHINA THROUGH THIS WEEK!!!!
Update #18 (October 29, 2020)
As we start this update we are reminded though this is an extremely hard week in all our live’s, ESPECIALLY MAGNUM’S AND TASHINA’S, it is a week filled with mountaintop gratefulness once again and broken-hearted sadness. In moments of tiredness we cling ever so closely to God as we watch our little Magnum in fever, exhaustion, hives, throwing up and he just continues to be the person God made him to be. Striving to smile and play. Keeping the joy!!! It is the personality God has given Magnum that we continually look for from day to day and it makes our hearts soar to see. When it is missing, we long for it and pray God will allow us to see it again each time AND HE HAS! WHAT A WONDERFUL GOD!! What peace that cannot be shaken, what LOVE!
We left early Saturday, October 24th, to take Magnum and Tashina to San Fransisco. We spent the morning on the beach…Magnum’s first time. The memory of his face when he first saw God’s big pool was priceless. We walked along the beach kicking water and allowing the waves to mark our pants from the knees down. The tide pools carried starfish, anemones, sand crabs and more and we laughed and took advantage of every moment, putting off the inevitable. Between 1:00-2:00 pm we dropped Magnum and Tashina at the hospital, thanking God for Magnum’s lack of fear of hospitals even after what he has been through. He just waved and blew kisses to us all with his “huge” (his newest word) smile. We spent the rest of the day at the beach allowing Remi and Cadee to play to their hearts content and believing we will one day do the same with Magnum. Hearts heavy at leaving, we also learned Magnum’s hemoglobin was low. He was to undergo a transfusion before chemo started the next day. His room in the BMT Unit on the 6th floor has a window sill he LOVES to sit on and watch outside.
Sunday, October 25th, chemo was given in a small dose to test his response, then it was to be administered in a 6 hour dose. He proceeded to get a fever of 101 degrees that went up to 104 degrees, then he developed hives right before the first dose ended and threw up. Forty-five minutes before the dose stopped his breathing became labored and they called respiratory. They decided the next day, Monday, he would be moved to the PICU and monitored as he received the next dose of chemo. They also would administer it at a 10+ hour ratio. PICU is not fun! No big window, many restrictions including his diet. It was very hard for Tashina too. In the BMT Unit she had a bathroom and accommodations. This was not so in the PICU. God has strengthened her beyond what I have ever known…and I have always known her to be strong. The slower pace with chemo, Benadryl onboard and Tylenol seemed to help and Magnum’s reactions declined. He wasn’t eating well, but then again, at that point they were trying to give him adult food. He does not like salmon! LOL!
Monday’s and Tuesday’s chemo was around 10 hours each day. Wednesday was Magnum’s first day of rest. They moved them back up to the BMT Unit and HE HAD HIS WINDOW SILL BACK…YAY!!! His eyes had seemed sunken in somewhat on Monday and Tuesday. Wednesday he looked better. They have him on medication to keep his kidneys strong and they are monitoring everything closely. The day of rest saw him as the same happy, joyful little man. Belting out his ABC’s in operatic fashion. Blowing kisses, building magnet sets, coloring and looking like himself by the end of the day. Tashina also seemed relieved to be back in the BMT Unit.
We THANK YOU SO MUCH for all the prayers for the first round of chemo. Yes, there were reactions, but all in all we thank God for Magnum’s reactions seeming short and going away in between treatment. As Tashina walked out of the PICU, she realized many of the patients in there had decorations all over their walls, meaning they had been there awhile. As she told me about walking by each room and praying for each child, I could not help remembering little Nylada. Please continue, as the Lord leads, to pray for her and her family. We do not know why each of us walk the road we do at times, BUT GOD knows and has a plan and it it is even to bring to mind those who need prayer, then we do not want to miss the opportunity. PRAYERS ARE POWERFUL! THANK YOU DEAR PRAYER WARRIORS!!!
Magnum has Thursday, Friday and Saturday off (to rest). Then on Sunday, he starts the last two chemo for four days. These we are told will make him more sick. We enter this unknown clinging to the peace God has given us, praying it will be minimal to none and the danger which then presents itself as he has NO immunity or ability to fight off anything ends quickly with a successful transplant on November 6th (November 5th is a rest day and the day Grandma heads to the family house in case he goes into rejection and Tashina needs to become an emergency donor).
THANK YOU SO MUCH FOR YOUR OUTPOURING ENCOURAGEMENTS AND DONATIONS TO MAGNUM AND TASHINA!!! MOST OF ALL< THANK YOU FOR YOUR LOVE AND PRAYERS…we are sustained!!!
I could not help all week thinking over and over if God’s intimate love of each of us and how uniquely He made and knows each.
Psalm 139
“Oh Lord, You have searched me and known me. You know my sitting down and my rising up; You understand my thought afar off. You comprehend my path and my lying down, and are acquainted with all my ways. For there is not a word on my tongue, but behold, O Lord, You know it altogether. You have hedged me behind and before, and laid Your hand upon me. Such knowledge is too wonderful for me; It is high, I cannot attain it. Where can I go from your Spirit? Or where can I flee from Your presence? If I ascend into heaven, You are there; If I make my bed in hell, behold, You are there. If I take the wings of the morning, and dwell in the uttermost parts of the sea, even there Your hand shall lead me, and Your right hand shall hold me. If I say, “Surely the darkness shall fall on me”, even the night shall be light about me. Indeed, the darkness shall not hide from You, but the night shines as the day; the darkness and the light are both alike to You. For You formed my inward parts; You covered me in my mother’s womb. I will praise You, for I am fearfully and wonderfully made; marvelous are Your works, and that my soul know very well. My frame was not hidden from You, when I was made in secret, and skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed. And in Your book they are all written, the days fashioned for me, when as yet there were none of them. How precious also are Your thoughts to me, O God! How great is the sum of them! If I should count them, they would be more in number than the sand; When I awake, I am still with You.”
We love you all!!
~ Magnum and Family ~
P.S. – I am including two addresses as we have been asked how you can send packages and cards to Magnum (and Tashina).
- PACKAGES OF ANY KIND CAN BE SENT TO THIS ADDRESS FOR PREPARATION TO GO INTO THE BMT UNIT:
Magnum Minnick or Tashina Minnick
C/O Compton Family
6261 Grizzly Flat Road
Somerset, CA 95684 - LETTERS/CARDS/FLAT MAIL CAN BE SENT TO THIS ADDRESS:
UCSF Benioff’s Children’s Hospital: Magnum Minnick
6C BMT Unit
1975 4th Street
San Fransisco, CA 94143
C/O Volunteer Services/Patient Mail
Below Photos:
1) Magnum’s first time at the beach
2) Arrived at the hospital with Mama
3) Some effects from the first round of chemo
4) Back in his window room on the BMT floor
5) Happy boy yesterday…first day of rest
Update #17 (October 19, 2020)
Dearest Prayer Warriors,
I apologize for the delay with this update. This has been the hardest update to write since the beginning. On one level, we are on a mountaintop. PRAISE GOD FROM WHOM ALL BLESSINGS FLOW! THE DONOR CAN DONATE BONE MARROW! We are still waiting for the infectious disease panel to come back, but they are cleared medically! Our great God has answered prayer after prayer throughout all of this. Small answers, big answers, details we would/should not even know…BUT GOD in his great abundance of love for us saw fit to give us more background, more of the prayer answers seen, the tiniest details…HE DID THAT FOR US! What great love and care! We feel wrapped in our Father’s Love! THANK YOU EACH DEEPLY FOR YOUR PART IN THE LOVE AND PRAYERS! God faithfully uses each of you and your prayers to minister to us. We feel it, we cherish it and we are given peace through it. SO THANK YOU AND NEVER DOUBT YOUR PART IN THIS, PLEASE!
On another level, here we are…and all that means! Which is SO MUCH! It is mind boggling at times. There is a sadness in this week as we mark each day, hour and moment until Saturday’s hospital admittance. We want to capture and treasure the “ordinary days” and hold them forever. We want to hold each other and not let go. We want that our eyes can capture and cement to our memories the visions of Magnum. As I held our dear Magnum, (grandma rocks him at nap time on school days) he rubbed the back of my arm while I patted his leg. I thought, let me hold that feeling and this moment forever, Lord! And yet, Your will Father for You know and love him more than any of us…yet how is that possible! Because our God, He is love and He is sovereign, and with that there is peace!
On October 14th, we had a ZOOM meeting with the transplant doctor. We learned our donor was medically cleared to give bone marrow…PRAISE GOD! We are waiting on the infectious disease panel which is the final barrier that could change the course toward transplant with this donor. (AS I WAS WRITING THIS, ANOTHER PRAISE JUST HAPPENED. ALL INFECTIOUS DISEASE PANEL FOR THE DONOR CAME BACK NEGATIVE!!! THE PRAISES JUST KEEP COMING!!!) During the ZOOM meeting, a trial study of a drug they use on adults and older children was introduced and Tashina was asked if she wanted Magnum to participate in it. We also discussed GVHD (Graft Versus Host Disease, where his white cells attack white cells from the bone marrow), TMA (Thrombotic Microangiopathy, a small blood vessel disorder usually affecting the kidneys), VOD (Venmo-Occlusive Disease, iron levels compromise liver functions) and the fact that he is 2 years old and under 2 presents higher risks, so he is borderline. The doctor shared she belives Magnum’s two highest risks are the VOD and his age, though the others are possible as well (but I’m also remembering this is an 11 out of 12 donor which is AMAZING itself). “Acute” and “Chronic” GVHD were explained. Acute meaning in the first 100 days and chronic meaning after 100 days. If there is acute GVHD there is a higher chance of chronic also. These can range from rashes to organ issues. I believe we ended the meeting reinforced in the road ahead and looking to Thursday as that was Broviac day.
October 15th, Magnum was scheduled at 11:40 am for a new Broviac (this was wonderful to the rest of the family, especially Magnum’s uncles who are teenagers as it meant we had to be in San Fransisco at 9:40 am, not 6:30 am as originally set.). THANK YOU FOR ALL THE PRAYERS THAT DAY!!! Once the surgeon looked at Magnum’s old rash from the last Broviac, he concluded he did not want the risk of placing the new one in the same area so it went in on the other side starting in his neck. This was a frustration for Magnum, as seemed the whole process this time. I believe he thought when the last Broviac was pulled in the emergency room he was done, so to wake up to this again was not pleasant (and the wake up was pushed, so he seemed more agitated with that also). He went up to the transplant unit for his labs WHICH WERE EXTENSIVE…32 vials! Thus, Broviac works so much better for blood draws. All in all, once again a trooper! We were told it would be 4-6 hours after surgery before we could leave, so we took Remi and Cadee to the beach and to the tide pools. Then we went and saw Magnum from his window on the 5th floor and waved. This gave is a feel of what “getting to see him” will be like. We left San Fransisco around 9:00 pm. The day was physically, mentally, emotionally and spiritually exhausting for all of us. Thankfully, Magnum rode home mostly sleeping.
October 16th, Tashina received the last pre-leukemia results, ones we do not fully understand and are awaiting clarification. When you have bone marrow failure reticulin fibrosis or fibroids can build in the bone. Reticulin fibrosis is common in benign or malignant bone marrow failure disorders/cancers. Magnum’s is mild (1/4+, so below zero). It can lead to and has been associated with myelodysplastic syndrome (MDS) which is a form of cancer and is pre-leukemia according to the Mayo Clinic. We do not know if this makes Magnum’s test results positive for pre-leukemia or not because it is only the reticulin fibrosis. We are waiting for answers to that as well as one more pre-leukemia test. BUT GOD! You see some do not understand transplant now for Magnum, yet God has given Tashina all she needs in Him and He has us His timing in ALL this. The fact that these reticulin fibroids are even there is an amazing YES GOD in moving forward with transplant.
October 19th, (today) Magnum had his first bandage change. He does have a rash from the bio-patch (chlorhexadine) they used. Contacting the transplant doctor for further instructions. PLEASE PRAY FOR THIS!!!
Our timeline now:
• October 23rd: Magnum and Tashina prayed over by Pastor and Elders at 3:00 pm (PLEASE JOIN US WHERE YOU ARE!!!)
• October 24th: Magnum’s admittance to UCSF
• October 25th-27th: Magnum chemotherapy/conditioning
• October 28th-31st: Magnum rest
• November 1st-4th: Magnum chemotherapy
• November 4th: Donor collection day
• November 5th: Magnum rest and bone marrow arrives at UCSF
• November 6th: Magnum transplant (On Nov. 5th, Grandma will go down to the “Family House” and be there for 21 days or until bone marrow is 100% grafted. This is the primary rejection time, if rejection is going to happen.)
PRAISES:
• For Peace
• Prayer warriors who lift us at all times
• Donor being able to donate bone marrow and being 11 out of 12 match
• Infectious disease testing done and clear
• Broviac being back in
• We are moving forward before anymore pre-leukemia markers are formed
• School is going AMAZING
• Magnum’s iron level came down from 745 to 687!!!! YAY!!!
• The bank had graciously taken our petition to their board and set us up with a donation account. We have set up two ways to give, as they recommend to us: by check or by card. INFO FOR THIS AND THE CONTACT PERSON WILL BE POSTED ON THE WEBSITE WITH THIS UPDATE. (Thank you for your patience on this as I know we are dinosaurs when it comes to all this and just want to make sure everything is right before God.)
PRAYER REQUESTS:
• Nylada
• Our last week with Magnum and Tashina before transplant to be memories, not stress
• Chemo (mild to no side effects), transplant, the medications, the risks to rest in Savior’s hands
• This new “rash” TO GO AWAY!
• All other tests to be negative for pre-leukemia
• This next two weeks schedule for ALL of us (adjusting), ESPECIALLY MAGNUM!
• The household, while grandma is gone, to be uplifting each other and focused eternally, not on the grind (negative) of the day
• Packing for Tashina as it is very specific
• Us to be used to reach others for SAVIOR and shine the light we see and know that is Jesus!
• GOD TO BE GLORIFIED!!!
Thank you all so very much. We love and appreciate all your prayers. I do not have the words to adequately express how much your intercession on our behalf means. My mama’s/grandma’s prayers for each of you is that our Lord and Savior shines His face on each of you and blesses you as you have this family! We love you all!!!
~ Magnum and Family ~
* God’s humor in the timing details: Saturday is day 59 of the 60 day window of dental clearance!
Psalm 46:1-3
“God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.”
Isaiah 26:3
“You will keep him in perfect peace, whose mind is stayed on You, because he trusts in You.”
Update #16 (October 13, 2020)
Dearest Prayer Warriors,
Once again the Lord has abundantly blessed us! It has been a FULL 15 days since Update #15 and many things have happened. It is mind blowing to watch the details unfold. I have witnessed and been part of miracles God has done in my lifetime, but I am humbled at the tiniest details God is choosing to show Himslef in as we journey through this course in Magnum’s life. Get ready to be awed:
After Broviac placement in September 18th, a trip to San Fransisco on September 23rd and a phone call saying donor number one was not able to give bone marrow, we were in a holding pattern. Pre-transplant medications had been started and Magnum was doing well, though he could not have a bath…he LOVES baths! On September 30th, Magnum did his 14th blood transfusion. At his blood draw on September 28th, they changed the dressing on his Broviac and applied a different type of bandage. This new type of bandage was also what they had ordered for Tashina to use in changing his bandages at home. Magnum developed a nasty rash that blistered, oozed and even bled in some places. On October 3rd, we had a wonderful prayer time for Tashina. The rash Magnum had was awful and he was so uncomfortable, itchy and hurting which caused the Broviac line to become compromised. Tashina took Magnum to the emergency room. After consulting with the transplant team in San Fransisco, we were told they would do one of two things: take the Broviac line out or take that Broviac line out and replace it with a new line. A Pediatric Surgeon decided the line could be pulled out with no surgery and replaced at a later date. The Doctor pulled the line while Magnum slept and he did not even bleed which amazed the Doctor. PRAISE GOD FOR REMOVAL OF THE BROVIAC WHILE WE ARE IN THIS HOLDING PATTERN!!! PRAISE GOD THAT WE COULD KNOW THIS ABOUT THE ADHESIVE AND HAVE TIME FOR THE RASH TO HEAL BEFORE MOVING AHEAD WITH TRANSPLANT. Magnum is LOVING his bath time!!!
The transplant team notified us of a new plan of dates. This is the current plan:
• Wednesday, October 14th: ZOOM meeting with the transplant team and Doctor
• Wednesday, October 14th: We find out if the new donor is able to give bone marrow
• Thursday, October 15th: (If the new donor can give bone marrow) Magnum will have a new Broviac placed in San Fransisco at 8:30 am as outpatient surgery
• Friday, October 23rd: 3:00 pm prayer with our Pastor and Elders for Magnum ad family (please join them from wherever you are to pray at this time)
• Saturday, October 24th: Magnum enters UCSF hospital
• Sunday, October 25th – Tuesday, October 27th: Magnum starts chemotherapy/conditioning (this is one day less than they originally had set for him…PRAISE GOD!)
• Wednesday, October 28th – Saturday, October 31st: Magnum has his first rest from chemo
• Sunday, November 1st – Wednesday, November 4th: Magnum has 2 chemistry and 2 boosters to deplete what is left of any bone marrow in his body
• Wednesday, November 4th: Donor collection day! (the donor center is open especially for Magnum’s case only that day…PRAISE GOD!)
• Thursday, November 5th: Bone marrow arrives at UCSF hospital
• Thursday, November 5th: Magnum rest
• Friday, November 6th: TRANSPLANT DAY!!! DAY ZERO
CAN YOU SEE GOD?!?! HE IS SO VERY PRESENT IN ALL OF THIS AND IS SHOWING HIMSELF! WHAT A GREAT AND AWESOME GOD WE HAVE!
PRAYER REQUESTS:
• Please continue to pray for Nylada when you think of it. We may never know the impact of those prayers on her life.
• For donation account to be up online by next week (we are trying to finish last details!)
• For donor to be able to give bone marrow and move forward
• For Broviac placement in San Fransisco
• For no adhesive/rash issues throughout the coming months
• For Magnum’s iron levels to stay down (He is taking tumeric chewables and we are hoping to see levels this week.)
• For the last pre-leukemia test we are still waiting on
• For answers to our questions on Wednesday’s ZOOM meeting
• For side effects to be none or few from chemo and medications
• For transplant success
• For others to be reached for our SAVIOR by whatever He chooses to use us in
• For God to be glorified
PRAISES:
• We have a new timeline
• For His faithfulness and love that we have seen time and again as He richly blesses is in this journey
• That He is in the details and has showed favor to us by showing us the details he is orchestrating
• For removal of the Broviac so Magnum’s rash could heal
• For knowledge of this adhesive rash/reaction
• For the donor center opening special for Magnum’s needs
• For one day less of starting chemotherapy
THANK YOU ALL FOR YOUR LOVE AND PRAYERS FOR US! WE PRAY YOU ARE BLESSED AS GOD HAS BLESSED AND USED YOUR PRAYERS TO ENCOURAGE US. MAY HE LIFT EACH OF YOU WHERE YOU ARE AND SHOW YOU HIS GREAT LOVE AND WILL FOR YOU! WE LOVE YOU!
Love,
~ Magnum and Family ~
P.S. – The website worked great to send notifications for prayer when Magnum had to go to the emergency room. We encourage you to sign up the website as it is the fastest way for us to get prayer requests and praises out. If you have any problems or are not getting posts, please contact us through the website or by phone or email so we can help resolve those problems with you. Our daughter, Tiana, lives out of state now and is helping with all aspects of the website, donations and questions on sending or helping. Please, contact her for anything as it is not an extra burden to anyone and she would love to help.
Update #15 (September 28, 2020)
The plan was to update everyone right after our San Fransisco doctor’s appointment on Wednesday. Once again, we plan, God directs. And once again much has happened. I’m hoping you all are able to access the website as the updates, pictures and information are all there and we have someone working on that all the time now. It is the easiest way to see the information. If you subscribe, make sure you respond to the email for subscription verification. Otherwise, the subscription is not complete. We just received approval on Friday for the donation account. There should be information on the website by the end of the week.
For the ECHO (see picture in gallery), Magnum was the perfect patient and never moved once. The tech said, “I wish all my patients were like that.” She was surprised because he is only two years old and did so well. The COVID swab no fun…poor boy! It was absolutely awful. It was up his nose for ten seconds and burned afterwards. He screamed and cried, but a firetruck sticker made it all better.
We will start with broviac placement. WOW!!! The term “Unphased” was our miracle wording for this procedure. Magnum went in, played a bit with trucks in his bed, was given some loopy medications and was wheeled back for a two hour procedure to place the broviac and take a bit of bone marrow from his hip bone to biopsy, then sent to recovery. The surgeon who performed Magnum’s procedure said he wanted to try to do Magnum another way. This way was in the left side under the collar bone, straight into the vena cava…how they do on adults, instead of in the right side of the neck and down. IT WAS BRILLIANT! Everyone was so delighted and impressed, even down at San Fransisco in his appointment. We had been told by at least five different people that we needed to be prepared when Magnum woke from anesthesia he could be “aggressive, out of control, some sweet little kids become monsters coming out of this drug” and sometimes they have given them a little something for this. When he came to, he was “Unphased”. His amazing, smiling, joyous self woke up the same. No complaints of sore or anything. I don’t even believe he knew he had an “owie” until they checked it. Then he proceeded to jingle the tubes hanging out of his chest. TALK ABOUT BOUNCE BACK! I don’t think anyone could believe he was so up and ready when he was. He was admitted and stayed overnight so Tosh could learn how to take care of the broviac. By the time I picked them up the next day he was ready for play and sunshine. STILL ALL SMILES! (There are pictures of before procedure, in recovery and after procedure in the gallery.)
While in the room at the hospital, they met the father of a little two and half month old baby girl named Nylada. She has been in the hospital since she was ten days old and is on the kidney transplant list. Tosh asked if she might put Nylada and their family on the prayer chains and the father said yes. Please be praying for Nylada and her family which include her mother, father and two sisters (3 and 6 years old).
Magnum in some ways is the opposite of other two year olds. Instead of mimicking others, he LOVES to get you to mimic him. But, like most two year olds, he likes attention. He watches intently when Remi and Cadee are doing or saying something, then decides how he can get in on the action. Remi was telling a couple of people about how he can ride his bike without training wheels and Cadee was talking about her pretty princess dress. Magnum lifts his hsirt and says “Me, owie!”. Already using it! Haha
On Tuesday, September 22nd, Tosh received a call saying the first donor, after medical check-up, was unable to give bone marrow, but could still give peripherally. The best situation for Magnum in transplant is bone marrow, but peripheral can be done it just raises the chances of Graft Versus Host Disease (GVHD) which is a reaction sometimes in transplant patients. It can be short term or chronic. This was disheartening, BUT GOD! Our doctor had already picked two donors, so she moved on to the next donor to see if bone marrow is possible. The first donor is still on the table because if the second donor comes back with no ability to give bone marrow it will revert back to the first donor for peripheral. Many questions came up for us and God’s timing being what it is, we were due for a doctor’s appointment in San Fransisco the next day.
On Wednesday, September 23rd, we headed to San Fransisco. We decided to have some fun in the day before the 3:00 pm appointment, so we headed to Pier 39 hoping we could at least let the kids see the sea lions if it was not too crowded. IT WAS EMPTY! At least until later. We sat watching the sea lions and then enjoyed some seafood before heading to the hospital. Tosh, Cadee and Magnum were to get blood work, Magnum was to have his broviac dressing changed and we were to meet with the doctor. Tosh felt like she done “ten round with a beast” after holding Cadee for her blood work. The appointment was very difficult. The doctor is, of course, required to read off all the side effects of each drug and let Tosh know what they do. THAT IS VERY NEGATIVE, EXTREMELY HARD AND DIFFICULT TO PROCESS! When you have this bright, energetic, playful little man in the background (we ALL were on ZOOM in the meeting) and you consider what is about to happen with all these drugs…it is, to say the least, DIFFICULT! The doctor answered all of our questions, including the ones to do with the bone marrow versus peripheral transplant. When asked what amount of change peripherally transplanting versus bone marrow would be the doctor said Magnum has about a 15% chance of some form of GVHD with bone marrow and that goes up slightly with peripheral. The doctor also told us his transplant outlook is EXCELLENT (twice). She said Magnum’s tests that were in so far showed no pre-leukemia (there’s one more we are waiting on for that also). All his organs and testing came back saying he is strong and healthy. ALL OF THIS WAS GOOD TO HEAR IN CONTRAST TO THE NEGATIVE. PRAISE GOD! At this point the dates have changed to possibly admitting to the hospital in San Fransisco on October 10th or 17th.
At this point in the appointment, Magnum went to get the dressing on the broviac changed. So far, this is the HARDEST PART FOR BOTH MAGNUM AND TOSH. He has started on two medications that are pre-transplant and so far, so good. Tosh is navigating a new normal with broviac, having to be inventive when it comes to distracting Magnum at bath time. He loves baths and he is not allowed baths or showers right now. The other day, Talia and Tosh were cleaning up from dinner and Magnum and Remi were playing. Then, it was quiet…Talia found Magnum in his room trying to pull the tape off his broviac. Since then, Tosh has just talked to him and explained the broviac to him. He is a smart guy and discussing things with him (even at his age) helps. However, he still thinks taking the dressing off is okay and jingling the tubes so he is watched all the time.
As we await news from the second donor, as to whether she can give bone marrow, we have had more questions arise. Lots of prayer, lots of conversation, lots to process with the wisdom God gives us. So we are reaching out to the transplant team again, resting in the dates changing and praying for the outcome God has in His sight.
Magnum will receive another transfusion this Wednesday (September 30th). His iron levels are high, but not dangerous yet…before the transfusion.
PRAYER REQUESTS:
• For Nylada and her family as she leaves the hospital and awaits a kidney transplant
• For the new timeline for Magnum’s transplant
• For Magnum dealing with his broviac
• For bone marrow to be able to come from the second donor
• For Magnum’s iron levels to go down and stay low
• For his last test for pre-leukemia to come back negative
• For answers to our questions from the transplant team
• For ALL the negative side effects of the medications he may have to be on
• For God’s peace still in the midst of all the changes
• For the ability to reach others for Christ and the mission of this battle
• For our Lord and Savior to be glorified
PRAISES:
• For the faithfulness off our Lord and His ever flowing blessing toward us
• For the broviac placement being so outstanding…UNPHASED
• For the coming out of anesthesia in such a wonderful way
• For all the wonderful news of the test and bone marrow biopsy saying how healthy Magnum is
• For a beautiful day in San Fransisco
• ECHO, he was the perfect patient and never moved once
WE THANK YOU ALL AND APPRECIATE YOUR PRAYERS AND LOVE!!! May each of you know the blessing you are to us and may the Lord richly return that blessing in your own lives. We love you each dearly!
Love,
~ Magnum and Family ~
Isaiah 43:2-3
“When you pass through the waters, I will be with you; And through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned, Nor shall the flame scorch you. For I am the LORD your God, The Holy One of Israel, your Savior…”
Update #14 (September 15, 2020)
Dearest Prayer Warriors,
It never fails the moment I send out and update something happens or changes and I want right then to send another. But quite honestly, you would be tired of me and I would be a slave to email.
The very day I sent out Update 13, we were notified transplant was a go. Magnum completed a dental check on August 27th and Ortho referral on September 3rd. This week holds an ECHO on September 16th then his Broviac (central line) placement and bone marrow biopsy on September 18th (admitted to the hospital). There is a bit of a hang up between the two hospitals as to what level he should be transfused at and whether he will receive a transfusion this week or next. Next week is a clinical visit with transplant doctor in San Fransisco on September 23rd (we are hoping this day also holds his next transfusion. it would set him up well for not needing another until after transplant). Then in October he will enter UCSF with mama. At that time, the 2 week regimen of chemo will start with the first 4 days conditioning his blood by killing his lymphocytes. We are told they are sometimes placed in ICU for this and a testing of a small dose is done first to see reactions. We are told this is usually overkill and not to worry. This is something we would like to remember, but we realize very strongly our humanness in the midst of this; so please, any and all of you, hold us in accountability for things we have been told (like not to panic at ICU, etc.). WE BELIEVE SO STRONGLY IN THE POWER OF YOUR PRAYERS! WE HAVE SEEN HIS GLORY IN THIS AND CONTINUE TO DO SO!
Transplant is scheduled for October 17th.
I left the last update with Magnum getting ready to have his 13th transfusion. After transfusions his iron levels go up usually around 200. Tashina has been still faithfully giving him tumeric and cilantro (natural blood chealators). Magnum’s blood only went up 23. God is good! Because of this he will not have to have an MRI, which would have required another putting him under anesthesia. PRAISE HIM!
On September 2nd, at 9:10 am, I received a text from Tashina saying, “Mom, I’m listening to all these sounds I haven’t heard.” I asked if she received her “hearing aids”. She said, “Yes! I’m just sitting in the car in the parking lot listening to all the sounds. It’s amazing what I couldn’t hear.” I then received another text from Tashina and it says, “I cannot believe how high-pitch and squeaky my daughter’s voice is!” I said, “Oh hon, you really need to go play house with her. She voices all her characters and gets even higher and squeakier.” An hour later, (after playing house with Cadee) I received this text, “Happy Tears”. PRAISE THE LORD! Tashina can hear her beautiful children’s sweet voices.
We are still in the midst of website turmoil. Please forgive us. We have no idea what we are doing. A dear friend is helping us now, so hopefully it will be all set before Magnum leaves for transplant.
We have set up an account if needed for donations and there will be a contact person on the website to privately message and access if needed. We are not expecting needs and have tried (feeling the Lord has given us the time) to be prepared for this. However, as we have been told, having it ready is better than not. Tashina was going to have to pay for all her meals, but it is now covered as well. I’m telling you all again, YOU MAY NOT SEE AND UNDERSTAND THE POWER OF YOUR PRAYERS…THEY ARE HUGE AND GO TO A MIGHTY GOD!
PRAYER REQUESTS:
• The ECHO, Broviac placement and bone marrow biopsy this week
• Next week’s appointment with the transplant doctor and that the transfusion can be the and down there
• Next week Remi and Cadee start schooling at Grandpa’s and Grandma’s…that the transition will go well
• Next week and the following, Grandma starts turning over the reigns of 5 kids homeschooling and household to Talia and Tamara…that they will not overwhelmed and that they will see what’s important to do in the eternal scheme and what to let go
• For travel safety
• For doctor’s wisdom and test results
• For smooth transition into UCSF on October 3rd
• That our witness may always be pure for Him
• That God be glorified
• And finally, for each day of his chemo and this transplant on October 17th. We know God has the outcome and is the MASTER PHYSICIAN. We rejoice in His direction of our plan!
We love you all and thank you from the bottom of our hearts for your love and prayers that sustain us!
Love,
~ Magnum and Family ~
Psalm 121
“I will lift up my eyes to the hills
From whence comes my help?
My help comes from the LORD,
Who made heaven and earth.
He will not allow your foot to be moved;
He who keeps you will not slumber.
Behold, He who keeps Israel
Shall neither slumber nor sleep.
The LORD is your keeper;
The LORD is your shade at your right hand.
The sun shall not strike you by day,
Nor the moon by night.
The LORD shall preserve you from all evil;
He shall preserve your soul.
The LORD shall preserve your going out and your coming in
From this time forth, and even forevermore.”
Update #13 (August 25, 2020)
Hello Precious Prayer Warriors,
There has been SO MUCH HAPPENING! God is moving and we are seeing your prayers. The question for this update is where do I start?
In the last update we shared we were moving forward with transplant, but the genetic testing had to be done first. We finally were contacted and informed genetic testing could be done on July 15th. The very same day Shawn, Tashina and Cadee went to have blood drawn. We had been told it would take weeks for results. God has His time. The results came back on August 5th and ALL three tested negative for the DBA gene! This means two things:
1. They all three could be potential back up donors, if anything went wrong (Tashina being the best match and down at UCSF would be the likely candidate if needed).
2. This has all been the Sovereign hand of God as no one has this genetically. Not only does Magnum have this gene alone, but the fact that, as I have mentioned before, THERE ARE NO OTHER SIGNS OF THIS EXCEPT HIS ANEMIA (blood conditions). No deformities inside or out. WE HAVE SEEN THE LORD IN SO MUCH THROUGHOUT THIS WHILE PROCESS, IN WHO MAGNUM IS, HIS PERSONALITY, THE PRAYERS AND THE SHOWING OF THE LORD HIMSELF TO THOSE WHO HAVE BEEN TOUCHED BY THIS SITUATION. We stand amazed at the goodness of God!
When the doctor called to tell us about the negative results, we were told they were reaching out to two potential donors. On August 5th, we were told the two potential donors had both been exposed to COVID-19 and were placed in quarantine for 60 days with the unrelated donor registry. The doctor reached out to the registry to get more finite details, like are they truly quarantined or could their date near and exposure happen again as they are more “shelter-in-place” or such. This and a few other questions that have been broached before, because we live in different times right now, we are awaiting the answers. However, the transplant doctor set tentative dates for everything, if all is on target.
Magnum’s Tentative Schedule:
August 26th: 13th tranfusion
September 14th-18th: Broviac placement and bone marrow biopsy (Remi and Cadee will start, at this time, schooling with Grandma for the next month. Aunt Talia, Aunt Tamara and Uncles Jacob, Samuel and Micah will be helping with this.)
October 3rd: Enter UCSF and begin chemotherapy (Grandma will be on standby if needed to go to the hospital. The day or two before transplant Grandma will move to the “Family House” and the Aunts, Uncles and Grandpa will hold down the home front)
October 16th: Transplant Day (From here Grandma and Aunt Talia will take turns being in San Fransisco for Tashina and Magnum and being home for the rest of the family
SIDENOTE: In the midst of all this and throughout her life (since menengitis) Tashina has been battling hearing loss. She has had great pain, eardrum ruptures, infections, tubes, etc. to no avail. This month she was diagnosed with a hearing disability and will now have hearing aids (this will help her but not cure the problem. It is unsure at this time if there will be a cure or she will eventually lose hearing all together). The process to get the hearing aids is not quick, but we are hoping she can get them before going to UCSF.
With all that said, we are all feeling the reality of not only the situation, but each moment with Magnum even more. Trying to do “life must go on”, have Remi and Cadee in an adjusted situation at Grandpa’s and Grandma’s, homeschooling 6 again, jobs, deciding who is going to be where for each step (hospital and home) and when those are to be in place, etc. Because there are so many details, these are the challenges. Thank you for the offers of help with these challenges. BY THE GRACE OF GOD, RIGHT NOW WE ARE ON SCHEDULE! But we have your offers written down and at hand as needs that we are not thinking of may arise. We are so blessed by each of you, your prayers, your love and the gracious encouragements you give us. We are forever grateful!
PRAYER REQUESTS:
• That our Lord and Savior Jesus Christ will be glorified in all
• That Magnum will be healed
• That Magnum’s pain and discomfort will be minimal and healing will be quick and complete. That his joy remains strong and contagious!
• That Tashina gets her hearing aids and they are adjusted before all this starts AND A CURE CAN BE FOUND TO FIX HER PROBLEM.
• That we can ease the trauma/drama from Remi’s and Cadee’s lives
• Precision and guidance for each medical person having to do with Magnum
• That we all will be focused on each task and honor the Lord in doing them
• That God will draw others to Him through this
PRAISES:
• For the genetic testing negative results
• For the live that have been touched
• For Magnum’s contagious joy!
• For Tashina’s diagnosis
• For the details He continues to see us through.
Thank each and every one of you for your continued prayers and love. We are deeply appreciative and erver grateful. We love each of you and lift you to the Lord also.
All Our Love,
~ Magnum’s Family and Mission ~
(We are still working on the donation aspect. Please bear with us. Thank you!
Psalm 108:4-5
“For Your mercy is great above the heavens,
And Your truth reaches to the clouds.
Be exalted, O God, above the heavens,
And Your glory above all the earth.”
UPDATE #12 (July 1, 2020)
Dearest Prayer Warriors,
THANK YOU SO VERY MUCH FOR YOUR PRAYERS FOR OUR CONVERSATION ON WEDNESDAY!!! Only our sweet Lord and Savior could have orchestrated the timings on everything that has happened with Magnum. PRAISE HIM FROM WHOM ALL BLESSINGS FLOW!!! WOW! What a journey we are on!! And what a magnificent God we have in the driver’s seat!! Let me try to bring everything up to the moment.
In the last informative update, Magnum had just been put on the steroid trial….and it was not starting well. Out of 15 days on steroids, at twice a day, he should have received 30 doses to be successful. Magnum received roughly 10 1/2, the rest was thrown up, spit out, refused, etc. Rarely was a whole dose taken. However, at times Tashina may have worn a whole dose. At this point, on May 22nd, the hematologist pronounced “steroid failure” and said she was contacting the UCSF transplant doctor/team. Tashina had a phone conversation with the transplant team at this point that gave goosebumps at the info. When asked about moving forward with COVID, the reply was given that now there are new requirements in place, so they would need more from donors and such. Then the assistant looked at Magnum’s chart and told Tashina the doctor already picked a donor for him and all that was done. BUT HOW COULD SHE? HOW COULD SHE HAVE KNOWN HE WAS GOING TO FAIL STEROIDS? WHY WOULD SHE HAVE ALREADY DONE THIS WHEN WE WERE NOT EVEN GOING TO START STEROIDS UNTIL INTO THE SUMMER SOMETIME? GOD!! We were amazed!!
A telephone appointment was set up for Wednesday, June 24th and we asked you all to pray. The conversation was with the transplant doctor, her assistant, and a child-life specialist (someone who helps you navigate these type of things). The choice was given, though steroids had failed to keep him on transfusions until he was older. However, the more transfusions you have the less donors you have that can match at transplant time and you also have the battle of iron overload with more and more transfusions. This in turn, has to be bled off or removed with meds. From the start there has been an overwhelming peace at the thought that this may end up in transplant. We definitely prayed this DBA would go away on its own, but God knows Magnum and this situation and how He would use it for His glory. Resting in those thoughts, we had peace with this ending in transplant. To some, the thought of taking this vibrant, joyful young life and putting him through tough stuff, potentially deadly stuff, is perhaps unthinkable. As a parent, we are constantly, from the day they are born, asked to do tough stuff. To raise a child in the nurture and admonition of our Lord in this world IS TOUGH! A parent can only do what Scripture calls and what God lays on their heart for that child. Some is joyously wonderful and some is beyond our human capacity to do and shakes our hearts to the core, sometimes breaking our hearts. But as much as we would like all things to be easy or fun or beautiful with our children, to stand before our God faithful to Him and to love God more than anyone or anything MUST be our first choice….FOR FROM THERE COMES OUR PEACE!!!
From diagnosis on, God has given us this PEACE about transplant. So, the decision is to move forward with transplant as soon as possible. As we talked with the doctor, she noticed they have not done the genetic testing on Shawn, Tashina or Cadee yet. We are awaiting orders on this. The donor is being contacted and as soon as genetic testing is done a date can be set. This is an overview of what’s to come: Magnum will receive a Broviac line (see below) in his chest about 2 weeks before entering UCSF. “A Broviac is a type of central line that allows for long-term access to blood. There is an entry site where the catheter enters the blood vessel and an exit site where the central line comes out of the body. The Broviac has a cuff under the skin near the exit site.” (THIS PART MAKES TASHINA MORE NERVOUS THAN ANY OF THE OTHER SO PLEASE KEEP HER IN PRAYER FOR THIS.) The Broviac is designed to be able to be in for 3-6 months. Magnum will enter the transplant unit 14 days prior to transplant, this is known as Day -14. He will receive 8 days of chemo therapy to ready him for transplant. (See below)
Day -14…..admitting day
Day -13…..chemo
Day -12…..chemo
Day -11…..chemo
Day -10…..chemo
Day -9…..off
Day -8…..off
Day -7…..off
Day -6……off
Day -5……chemo
Day -4……chemo
Day -3……chemo
Day -2……chemo
Day -1……off
Day ZERO….transplant day
We are told transplant is much like transfusion. After this becomes Day 1, Day 2, etc. since transplant. If all goes well, it is 6-8 weeks in transplant unit. Then Magnum moves to “Family House”, which is like a hotel close to the hospital that families stay in. He will be getting labs twice a week and clinical (seeing doctor) once a week there. The stay here is as long as blood levels need to start looking “normal”. This is very individual, so there is no timing on this. After Family House, Magnum will be in “isolation” until his T-cells (immune system) are in normal range. Total timing for transplants can be 6 months to 2 years depending on the individual and any complications. Because Magnum has nothing but anemia with his DBA, and no other problems from it, we are hopeful the transplant will be done without complications. They used to look for a 10 out of 10 match for transplant, which was perfect. Now they look for a 12 out of 12. Magnum’s match of an 11 out of 12 is considered a 10 out of 10 which is the best. THAT IS THE POWER OF GOD IN MAGNUM’S LIFE!
PRAYER REQUESTS:
• Pray that the genetic testing can be finalized as soon as possible and a date set for transplant.
• Pray over Tashina’s concerns with the broviac line in Magnum’s chest
• Pray all final tests, screening, procedures go smoothly up to transplant and after
• Pray Magnum has little to no pain or discomfort and is able to keep his joy
• Pray for details of Remi and Cadee’s care and school and overall the Minnick Family
• God will draw more to Him through this and His will be done
PRAISES:
• For God’s timing is incredible…this has moved very fast and that was not our plan, but we are seeing the blessings in His timing all around.
• For Magnum’s joy and the personality God gave Him…..AMAZING!
• For all the lives God touches through Magnum
• God has brought a mama whose son had DBA and a transplant over in England alongside Tashina….there are no boundaries in God’s great love for us.
Thank you for all your love and prayers! Those prayers have sustained us through much of this last year. We love and appreciate each of you. We pray God’s blessings on you and your families. Thank you so very much! We love you all! ♥️
NOTE: Hopefully, by the end of July there will be a website up that you can visit to see some of the journey, God has Magnum on. We will keep you posted.
NOTE: Also, some of you have asked about gift (donating) to Magnum’s Journey. Really up to this point there has been no need. However, we are looking into setting up something now as travel to SF, lodging, food and the longevity of this next season present new financial challenges for the Minnick Family. Please keep this in prayer, too, as we know nothing of doing this. We will keep you posted.
PSALM 40:5 “Many, O Lord my God, are Your wonderful works which You have done; And Your thoughts toward us cannot be recounted to You in order; If I would declare and speak of them, They are more than can be numbered.”
~ Magnum’s Family ~
UPDATE #11 (June 21, 2020)
Dearest Prayer Warriors,
This is a quick request for prayer. I apologize for the length of time between these updates….it’s been moving so rapidly. So much has happened and IS happening. I feel I could have sent 4-5 updates with all that’s going on. However, I’m trying to get through all the next steps and be able to deliver all the news and a plan. So please bear with us. Magnum has failed his “steroid trial” and is now heading to transplant. This Wednesday, we have a phone appointment with his transplant doctor at 3:00 pm. Please keep this in prayer. God has moved mountains during COVID-19 for Magnum. I stand in awe and will share after Wednesday’s phone appointment (so I can share everything).
THANK YOU SO MUCH FOR YOUR LOVE AND PRAYERS….they are the heartbeat of all we do in this. We are forever grateful for each of you. All our love to each of you!!!!
~ Magnum’s Family ~
UPDATE #10 (May 7, 2020)
Dearest Prayer Warriors,
I have been trying to write this update for 2 months. At each turn I found myself being “stilled”. So, I waited as each hill and turn of the roller coaster that is DBA, took its course for little Magnum. THEN….this week the roller coaster pulled into full sight and it was made clear to us the next part of what the Lord has been doing. We thank you all, each and every one, for ALL your love and prayers. I have come to realize there are NO ordinary days. Each day is EXTRAORDINARY IN ITS UNIQUENESS AND BLESSINGS. AND YES, in its traumas and dramas as well. BUT, OH TO SEE THE BLESSINGS. THE SMALL ONES. THE LARGE ONES. THAT IS TRULY A GIFT FROM GOD!
On February 12, 2020, we all gathered to have a phone conference with the transplant doctor. She had stated to us that sometimes there is spontaneous remission up to 2 years old, and that protocol was to have steroids to try for remission before a transplant would be considered. This is not what any of us wanted for several reasons: remission is not a cure; steroids in that high of a dose to begin with often stunt the growth of young children; steroids that are considered to be working may be smaller amounts, but taken over a lifetime, reduce longevity and compromise organs leading to other life altering/threatening illnesses. Since the beginning, we have all felt the path of transplant was in front of us and have had tremendous peace with that. So, we went into the conversation having researched the length and time of the steroid trial. We had questions for our peace of mind, but also felt the Lord supplied the “#1 in the nation DBA transplant doctor” to us and therefore hearing her words of wisdom from experience was important. IT WAS A TOUGH CONVERSATION! It was hard to come away without feeling that at some point mankind may give Magnum a death sentence of life with steroids or life with remission possible but leukemia looming with it. As we asked all our questions and even stated we did not want steroids, but would prefer the transplant, the doctor said she would not do the transplant if steroids were not tried or if steroids worked by getting him off transfusion and at a low dose of steroid. (If it is not at a low dose or not off transfusions…steroids are a failure). She quoted from her oath that she could “do no harm.” Though this was all tough to hear, we understand her point of view and where she stands. It must be very hard to look at Magnum, WHO HAS ABSOLUTELY NO OUTWARD DEFORMITY NOR ORGAN DEFORMITY that usually comes with DBA and imagine taking him and making him sick to the point of possible death. That has to be SO HARD! We are thankful for Magnum’s doctors and believe the Lord has us in the perfect place of His will. So, we went with the doctor’s plan and the hope that “spontaneous remission” may still happen before he is 2. (His transfusions had spaced further out.) If no “spontaneous remission, then at the age of 2 (in June) he would do a round of steroids for 1 month to see if transfusions could be reduced and steroid reduced and have remission that way. If steroids failed, he would head for transplant.
On March 11, right before the COVID-19 scare, Magnum had his 8th transfusion. We were all so thankful as we went through the stay-at-home time and hoped that he would make it to the date President Trump had put in place of April 30th…..what a blessing Magnum did not have to go to any hospital setting during that time!! Tashina has been thinking that with the COVID-19, Magnum might need to wait longer to try anything, like even waiting a year. On May 1st, Magnum had a finger stick. This is what happens to tell the numbers on his hemoglobin to see if he needs a blood test and transfusion. The hemoglobin registered 5. This was not terribly concerning as the last time it registered 5 when he had the blood test he was at an 8.9. A couple of weeks after transfusions, he usually registers 13. The doctors do not want him going below 9. So if he registers in the 8’s, a transfusion is scheduled. The plan was to have a blood test on Monday and a transfusion was scheduled for Wednesday just in case.
On May 4th, a blood test was done. A doctor then called Tashina that afternoon and said that his numbers were critical….he was registering 5.9. Tashina took a reading of his oxygen level and it was normal. Then she checked his heart rate and it was elevated (when hemoglobin numbers are too low the organs have to work harder). So, Tashina and Magnum headed to the UCD/ER Monday evening. Poor Magnum!!! The emergency room IS NOT THE PEDIATRIC TRANSFUSION CENTER. He had to have the line in his hand and he was scared of all the masks people were wearing. Tashina had to start asking everyone to please enter with the mask off then put it on. He was a very frustrated little guy….YET NOTHING STOPS HIS SMILES!! He had to have 2 bags of blood. An exhausted mama and a son feeling somewhat better left the ER on Tuesday morning. However, a blood test right after the transfusion showed him only at 10. The hematologist wanted to keep the appointment on May 6th to see him and evaluate. On Wednesday, after a blood test, Magnum was only registering at a 7. So, the hematologist called the transplant doctor and it was decided to give another transfusion, #10, and start steroid trial. This did not bother Magnum, as you can see the Pediatric transfusion center is his second home. He even blessed one of the regular nurses by saying her name. Magnum truly spreads joy!!!! And we KNOW GOD KNEW THAT AND CREATED THAT IN MAGNUM!! He is a tough, sweet, little guy.
Last night, the steroids were to start. They do not give pills to that young of a child they said so he is to take a tube full of the oral steroid suspension with food. He ate last night, took the steroids and threw everything up. Tashina emailed doctor and said she would try mixing it with other things on Thursday morning. This morning she tried applesauce, juice, milk and formula….he threw them all up. She once again emailed doctor and said she would try ice cream tonight. If that doesn’t work the liquid is a failure. We are waiting to hear if the doctor wants to try the pill. He also has a rash around his mouth and on his belly. Not sure if it is from transfusion or the steroids. Please, continue to pray with us over our sweet Magnum. This is moving faster than the original plan. ISN’T THAT OUR GOD?!! We plan, but He directs, and what a DIRECTOR!! We cannot even begin to know God’s plan for Magnum. The Lord already uses Magnum to spread joy everywhere he goes. Some of his videos, people have shared they just watch over and over because it makes them smile or laugh. The Lord already uses this condition Magnum has to open doors to witness for Him.
PLEASE CONTINUE TO PRAY:
• for the steroid trial
• for the family as hope for “spontaneous remission” has past the doctor said (Although, we know the Master can heal at any time).
• for the Lord’s timing for all this.
• that we are prepared for His direction and timing as things unfold even though our plans may be different, He is showing us His.
• for no more ER trips for Magnum…these are not easy.
• for stamina for Tashina…a warrior’s portion, as she remains on the frontline of this battle all the time.
• most of all…as always….pray His will be done!!
Thank you beloved prayer warriors! We are grateful and thankful for each of you. I’m sure we will never know til heaven how you have truly upheld us. Thank you from the bottoms of our hearts! WE LOVE YOU ALL!!
A BLESSING TO END: I mentioned in the past updates that each transfusion brings a closer chance to iron overload. Through this process Tashina has tried natural as well as medicinal methods to help chelation (the blood to siphon off iron). Through the past month with turmeric and cilantro his numbers have dropped 20 points. PRAISE GOD!!!
Romans 8:31-32 “What then are we to say about these things? If God is for us, who is against us? He who did not withhold his own Son, but gave him up for all of us, will he not with him also give us everything else?”
~ Magnum’s Family ~
UPDATE #9 (February 3, 2020)
Dear Prayer Warriors,
Again, thank you for your patience in another update taking 2 months to come out. Our last update was in November. After that we did send out an additional prayer request for Remington (Magnum’s older brother). Remi is doing fine now. He will undergo another ultrasound to make sure his small intestine is back in place. Thank you for praying for him. We have a call in to the transplant doctor to discuss NOT doing steroids and if that will impact anything. Please pray for this, as we await the next step. Magnum has made it to 7 weeks before between his transfusions, which has also been encouraging. Please pray that the Lord opens all He wants for His desired outcome for Magnum. We have entered 2020 with renewed hearts, renewed visions, refreshed in our Lord and excited for what He can and WILL DO! We love you all and THANK YOU DEEPLY for your prayers and love. WE ARE BLESSED!
Lamentations 3:22-23 “Through the LORD’s mercies we are not consumed, Because His compassions fail not. They are new every morning; Great is Your faithfulness.”
~ Magnum’s Family ~
UPDATE #8.5 (December 4, 2019)
This morning at 10:30, Tosh had a tele-health appointment with the bone marrow transplant doctor in San Francisco. They have not found a 100% match (matching all 12 markers). However, they have found many matching 11 markers and that would be close enough for the doctor to do transplant. The doctor requested a trial with steroids (HEAVY) first to see if there could be spontaneous remission. Our concern is he is perfectly healthy now and steroids could leave his immune system compromised going into a transplant. Even more, we are praying about this as IT IS NOT A CURE. Please, pray for this huge decision! Magnum will have his 6th blood transfusion soon and his levels of iron have gone up tremendously which is a concern. He may have to have Chelation soon (lowering his iron with medications and a 10-14 hour recycling of his blood at night to strip the iron). PLEASE be in prayer on this also. Please send up some extra prayers for the family as Magnum’s older brother Remington has been sick for two days. He is in ER right now running tests. They think he may have Intussusception. This is a condition where the small bowel accordions on itself (best way I know to describe). They are also looking at appendix. Surgery is done for both. So please keep ALL the family in prayer tonight and in the days to come as well as special prayers for doctors diagnosing Remi. THANK YOU ALL!!! And may God bless each of you. All our love!
Psalm 34:10b & 1 Chronicles 16:11
~ Magnum’s Family ~
UPDATE #8 (November 15, 2019)
Hello precious Prayer Warriors,
THANK YOU FOR YOUR PATIENCE IN WAITING FOR THIS UPDATE! Our lives have taken many twists and turns since our last update for our sweet little Magnum. So, please allow me to combine this update both for your prayers, God’s encouragement and ultimately to glorify our Lord and Savior. To Him be the glory!
On September 27th we made the trip to San Francisco (WOW…a busy place for sure) to meet with the transplant team and discuss moving forward with a transplant for little Magnum. The meeting went GREAT! The doctor in charge of Magnum’s case was extremely helpful, informative, and was able to answer all our questions about risks, side effects and complications-thoroughly. As scary as a transplant is and as many problems as can arise from it…..MAGNUM IS IN GOD’S HANDS (the best hands)! The Lord has provided the number one place in the world for this disease AND the best doctor to perform it!!! We are humbled at His great care for our Magnum and our whole family. What an amazing God we serve!! As we talked, the doctor shared reasons for not having family donate blood (so Tashina and Neva will not be doing this), and reasons for wanting the search for donors to be opened to the world registry, even though Tashina is a 60% match, Cadee is 50%-60% match and Shawn is 50% match. Soooo, this is where we are!! It has gone to the world registry to find the closest match possible. WE ARE BLESSED!!! He still has transfusions every 4-6 weeks. He has had 5 to this date and he is still an amazing, energetic 1 1/2 year old (Check out the picture of him at the doctor’s. He had never seen a computer mouse and thought it was a phone…LOL!). The transfusion center loves him!! He never needs extra holding or is traumatized by the procedures. In fact, they prepare for normal one year olds and then find out it’s him and move him to a regular chair where kids who are a little older get the IVs. Truly, no one can say, God is not in details. HE IS IN EVERY DETAIL ALL THE TIME. We are thankful!!
Last week Magnum went to the ER for a bloody ear canal. Tosh saw a lump inside his ear and the ear canal was bloody. They cleaned it out and as far as they could see his ear drum was fine. We are not entirely sure what the lump is but we are thinking perhaps a cyst. He was referred to an ENT Specialist for further follow up so he will be seeing that doctor on November 18th. We have a long road ahead of us with all of this but we know God has already gone before us. Little Magnum’s mission is in His hands and we have peace in knowing this. As we have stated before thank you all so much for your love, support, and prayers! We are ever grateful to have such support as we walk this journey with our precious Magnum. We know there is great power in prayers and we have truly felt it.
PRAISES:
• We had safe travels to and from San Francisco
• We have a better understanding of what potentially lies ahead
• God has blessed us with a great care team
• Little Magnum remains happy and his joy is simply contagious.
PLEASE CONTINUE PRAYERS FOR:
• Healing for little Magnum’s body
• Continued strength for Tosh and Shawn
• Details only God knows
• The donor only God knows right now
• A match is found soon as the transfusions will eventually start becoming more of a problem. The more he has the more his iron levels will increase. So praying a match is found soon
• Wisdom as we continue this process and make necessary decisions along the way
• Wisdom for the doctors and transplant team we are working with
• Wisdom for the ENT specialist on November 18th for Magnum’s ear
• Peace for the family moving forward
• Above all else God to be glorified.
God bless you all! We love you!
HEBREWS 12: 1-2 “Therefore we also, since we are surrounded by so great a cloud of witnesses, let us lay aside every weight, and the sin which so easily ensnares us, and let us run with endurance the race that is set before us, looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.”
~ Magnum’s Family ~
UPDATE #7 (September 17, 2019)
God is so good! In our last update we shared a huge praise of getting the approval for Tashina, Shawn, Remington and Cadence to be tested for a match and for Magnum’s transfer of care to UCSF. On September 5th all four of them were tested and we were told it would be a couple weeks before we received the results. Last week we were contacted by the transplant team to set up the first meeting with all the family, so our first meeting with the transplant team will be September 27th at 11:00 am. Monday we received the test results of immediate family’s testing: Cadee is 50%-60% match, Shawn is 50% match, Tashina is 60% match, Remi is NOT a match. Even though Tashina, Shawn and Cadee are a partial match, further genetic testing for DBA and such will need to be done. So, the transplant team would like to reach out to the donor registry to see if there is a better match before moving forward with anything. Especially with host graph disease being a concern when having a bone marrow transplant. If anyone is not in registry to be tested and would like to be, please check out the donor registry link on our Links page. Once again though God has shown His goodness to us. We are also SO VERY THANKFUL that Magnum is holding his own with transfusions every 4-6 weeks and has not had to go on steroids also. God’s enormous LOVE for us is seen and felt everyday. Thank you all for your continuous love, prayers and support as we walk this journey with our sweet Magnum! We so appreciate and love each and every one of you!
PLEASE CONTINUE PRAYERS FOR:
• Healing for little Magnum’s body
• Strength for Tosh and Shawn
• Wisdom in formulating what questions we need to ask the transplant team (big family…many different thoughts and perspectives to help form questions…thank you Lord!)
• Wisdom for the doctors and transplant team we will be working with
• Travel mercies
• Peace for the family moving forward
• Above all else God to be glorified.
God bless you all! We love you!
James 1:17 “Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.”
~ Magnum’s Family ~
UPDATE #6 (August 21, 2019)
To start we give praise to God for His goodness throughout the last several weeks. As we stated in the last update, we have been waiting for insurance to approve testing for Tosh, Shawn, Remington, and Cadence all to be tested for a bone marrow match and referral to UCSF (University of California San Francisco) for transplant. PRAISE THE LORD! We received word, Wednesday, all has been approved, so now we move forward with scheduling the testing then scheduling meeting with the transplant team. God is so good!
Magnum’s last blood transfusion was July 12th. We updated with a praise that he didn’t need a transfusion at four weeks as anticipated. We have been in a holding pattern. Monday he had a blood test and the results showed he is in need of another transfusion this week. After a back and forth hassle regarding the insurance, they were able to schedule him for the next transfusion, Thursday August 22nd. Again, PRAISE THE LORD…as he made it 6 weeks between the last transfusion and this one. We give thanks to God for His goodness along the way! A couple weeks ago Magnum, Tosh, and Neva were able to go have pictures taken of Magnum for the photo shoot he was selected to be in. What a blessing! Thank you Jana Johnston Photography! Adorable pictures and wonderful memories. Just another example of God’s goodness throughout this journey!
We thank you all again for your love, prayers, and support. You are all appreciated and loved! We have felt the power of all the prayers and seen God working through them. Example: Wednesday we were at an AWANA meeting and they all spent a minute praying for us and Magnum and before we left the church we received the call from CCS approving moving forward…from here there is no more battles with insurance. PRAISE GOD!!!
PLEASE CONTINUE PRAYERS FOR:
• Healing for little Magnum’s body
• Strength for Tosh and Shawn as we head in to this next phase
• Testing to go smoothly and a match be found
• Wisdom in moving forward with the transplant team and next steps
• Peace for the family as we prepare for this next step in the journey
• Above all else God to be glorified.
God bless you all! We love you!
~ Magnum’s Family ~
UPDATE #5 (August 1, 2019)
A SMALL UPDATE WITH A HUGE PRAISE: I love you all SOOO much and THANK YOU SOOO for your prayers! I believe those are the mightiest weapons we wield. So I just had to share this little BIG PRAISE! Today, Magnum went in to have his blood drawn. They chose to do a blood draw because last week his hemoglobin was at 9.2. Today his hemoglobin was at 10.1. IT WENT UP!!! It has not done that before. Once it starts declining he needs a transfusion because it continues declining. It may be nothing in the grand scheme of things. However, this grandma believes in miracles, the prayers of His people, and giving God the PRAISE for all! So tonight I’m rejoicing. Wanted you all to share the joy in my heart!! Love you all!
~ Magnum’s Family ~
UPDATE #4 (July 28, 2019)
On July 25th, the family met with the hematologist doctor to discuss Magnum’s case. It seems overnight, our sweet little Magnum became “transfusion dependent” from the rare disease, Diamond Blackfan Anemia. It’s so hard to tell, as he is a bubbly, smiling baby that loves to giggle, laugh and play “hide and seek”. But every 4 weeks, he still tries to smile and be happy, but he is worn, tired and desiring to sleep a lot until he is transfused again. We shared that Magnum’s gene diagnosis showed not only RPS26, but also the FANCM gene mutated. This launched many questions as DBA is rare itself….but to have this gene mutation may be even more so. We had asked to be blood donors for Magnum. It was arranged early last week for Tashina and Neva to be tested for donating on July 25th as well. Magnum needed a donor to be without “E” and “Kell”. UCD used to do direct donations but has not for many years. We met this amazing doctor who created a way specifically to do this. She took our blood samples and said she would call the next day. Meanwhile, back to the meeting….we asked all our questions, many of which could not be answered except by transplant team. We were informed, however, the UCSF (University of California San Francisco), where the transplant would happen is NUMBER ONE in benign transplant conditions…DBA is benign. So, we are in the best hands….God’s first, then UCSF’s. We learned that not only are they working on testing Tashina, Shawn and their kids for bone marrow donors….but they have, quite possibly, 3-4 more months of testing, Magnum having a bone marrow biopsy, meeting with transplant team and other details before an actual transplant would take place. This is only if the transplant team finds nothing of concern in the other testing. We would all (the WHOLE family) meet with them. They believe your whole support team needs to hear what will happen, which is awesome as God gives to each a measure to bring to the table. After this time, if a transplant is scheduled it will be 3+ months in SF at the hospital for chemo, then the transplant and recovery. After that, it is still months of appointments, possibly years. However, a bone marrow transplant IS a cure for DBA!!!! Barring any complications there would be a cure and this battle would be over. So, now we wait. SOUNDS DAUNTING, right? WELL, here come the PRAISES! Let us share how the Lord has already been showing us amazing details in this process:
1. PRAISE: DBA is extremely rare (5-7 in one million) and Magnum has no look or signs of it. No heart issues, no physical attributes of it…NONE….AND YET GOD ALLOWED THIS TO BE CAUGHT. With just his fatigue, the doctors say, it shouldn’t have been caught so quick.
2. PRAISE: The outpourings of prayers and offers to donate blood and bone marrow.
3. PRAISE: TASHINA AND NEVA ARE BOTH A MATCH WITH NO ISSUES TO DONATE BLOOD!!! And just the fact that UCD would do that.
4. Two places are available for donating blood, Modesto and Oakland. We are praying for Modesto. PRAISE: The Lord brought a new friend into Neva’s life who lives in Modesto!!! They could possibly visit if donating is there.
5. PRAISE: UCD is awesome and now to be going to UCSF, the NUMBER ONE hospital in benign transplants. WOW GOD!!!
6. That happy little baby boy, Magnum, was selected to pose for a photographer who was looking for babies that like playing in water. PRAISING GOD THAT IN THE MIDST OF ALL THIS, HE HAS CREATED SPECIAL TIMES FOR US TO ENJOY!
And many more….
We serve an amazing God, who has every detail in His palm.
PRAYER REQUESTS:
• Healing for Magnum’s little body.
• For insurance authorizations to go quickly and smoothly
• Wisdom as we move forward
• Peace and Wisdom for Tashina and Shawn.
• God’s will in all
• God will be glorified in everything we do
THANK YOU ALL FOR YOUR LOVE AND PRAYERS!! We stand counting it all joy.
Psalm 121:1-2 “I will lift up my eyes to the hills— From whence comes my help? My help comes from the Lord, Who made heaven and earth.”
All our love,
~ Magnum’s Family ~
UPDATE #3 (July 20, 2019)
On Monday, July 15th, we took the time to enjoy the day together and make memories. That afternoon as we prepared to play Ultimate Frisbee, Tashina received the “call” we had been waiting on regarding our grandson (her youngest) Magnum. He does have Diamond Blackfan Anemia. A rare dangerous anemia that’s only cure is a bone marrow transplant. As God closed one battle/war, on the very day, He put us on the front lines of another….a true fight for Magnum’s life. He is showing Himself in ways unimaginable already. We have such a great and glorious God!! So, as I wish this were just an update on the “Praises” of our Lord, it is also a petition, a pleading for your prayers once again for our precious little Magnum and his family. May God be glorified and may we run the race with endurance and eyes fixed on Jesus, the author and finisher of our faith. I love you all dearly. Isaiah 26:3. We will try to update (Talia or I) as we can.
Here is an update from Tashina’s perspective: Praise the Lord we have a diagnosis!!! I received the call Monday evening and the Dr. said Magnum does have Diamond Blackfan Anemia (DBA). That was the expected diagnosis so we were not shocked and were happy to know we could now move forward with a treatment plan and working on curing him. He has had two blood transfusions so far (June 13th & July 12th) and we would like to cure him before he has to have too many more. The only cure for DBA is a Bone Marrow Transplant. So, we are strongly considering that route. I received a call from the Dr. yesterday evening (Thursday, July 18th) and found out that Magnum’s DBA is, in fact, inherited. However, he has a unique case because two of his genes are mutated from the DBA instead of one. One of his mutated genes is RPS26 and is autosomal dominant in its mutation. The other mutated gene is the FANCM gene and it is autosomal recessive in its mutation. This gene mutation (FANCM) is concerning as Fanconi Anemia (caused by FANCM gene mutations) can be fatal. The doctor is assuring us he does not have this at this point. We will be meeting with the Dr. on Thursday next week to ask more questions and talk about the pros and cons of every treatment option available to Magnum. Also, Shawn, myself, Remi and Cadee will be having blood work to check compatibility for transplant. My mom and I will be cross matched and typed for blood transfusion compatibility on Thursday as well.
PRAYER REQUESTS:
•Wisdom as we move forward
•Healing for Magnum’s little body
•Peace and Wisdom for Tashina and Shawn.
• God’s will in all
•God will be glorified in everything we do
Thank you for your prayers, love and support as we walk this unexpected journey with our little Magnum.
Psalm 121:1-2 “I will lift up my eyes to the hills— From whence comes my help? My help comes from the Lord, Who made heaven and earth.”
~ Magnum’s Family ~
UPDATE #2.5 (July 13, 2019)
Thank you to everyone for all the prayers and support! It has been quite a week as we hoped for a diagnosis at the beginning of the week, for little Magnum, only to be told by the lab it would not be complete until Friday. Waiting…this word is so easy to say, yet the action of it does not come as easily, especially in times such as this. We so desire to have answers and know how to move forward, but God is in control and He has planned for us one more weekend of simply being still, trusting Him, and making memories with Magnum. Results for the tests the doctor ordered will be in Monday, so we wait until Monday for the diagnosis. In the meantime, Magnum did have another blood test Wednesday evening to check his blood cell count. As we expected they were low again, so this morning Magnum received another blood transfusion, which went great. He is a trooper! An amazing, joyful little guy and very brave!
PLEASE CONTINUE PRAYERS FOR:
• Magnum’s little body to be healed
• Peace and comfort for Tosh and the family especially through this weekend
• Wisdom in moving forward after the diagnosis
• Above all else God to be glorified
Thank you all again for the love, prayers, and support! We are truly grateful! God Bless!
~ Magnum’s Family ~
UPDATE #2 (July 4, 2019)
Magnum had his appointment yesterday, July 3rd. The doctor was very helpful in answering all of our questions and gave us a good amount of information in layman’s terms so we could understand it. Magnum is starting to trend downward and so the doctor order a blood draw to check his levels and see if he would need another transfusion on Friday. Thankfully his levels, while still lower than they should be, are not so low that he needed the transfusion this week. She said he could wait until next week. Unfortunately, we were not able to find out the results of the genetic testing at the appointment as it will be another week before they are available. The reason for the long wait is because they are testing for 10-11 different disorders/syndromes. Hopefully and Lord willing, the results will be ready around July 9th-10th. We did, however, sign consent forms for a bone marrow biopsy, that will be performed the 3rd or 4th week of July if the results warrant it. So, please keep praying for Magnum’s strength and energy and for healing for his body. Also, please keep praying for the family and God to continue to be given glory in all areas and details of this situation. Thank you again for the prayers and support!
~ Magnum’s Family ~
UPDATE #1.5 (June 22, 2019)
I (Tosh) received a phone call from the pediatric hematologist’s assistant at the UC Davis Cancer Center. We are to report there July 3rd for test results and follow up regarding Magnum’s transfusion and current condition. He was doing better since the transfusion. His energy level has been higher and his appetite greater, but he has started to decline in energy and appetite. Pray he remains steady enough until we get the results. Any major change and we will need to go back to the ER. We were able to celebrate Father’s day with Shawn and Magnum’s Papa (my dad) this past Sunday. Something we are trying to do is make memories with Magnum before we delve into treatments and all that entails. Please continue to pray for The doctor(s) involved in his treatment and care. Pray for restful sleep for me and the rest of the family who is struggling without it. Pray for patience, waiting for results is hard. Thank you for all the love and support!
~ Magnum’s Family ~
UPDATE #1 (June 14, 2019)
Wednesday (6/12/2019) night we took Magnum to the ER, for a blood transfusion due to very low hemoglobin and red blood cells, per the direction and advice of his PCP. The normal range for hemoglobin in a one year old is 10.5-13.8 and his was 5.7. The medical team working on his case were unsure what was going on with him as he looked like a happy and healthy little baby but is indeed pretty ill. The doctors at first were all saying that he would be getting a blood transfusion and eventually an IV line was put in and labs, including another CBC, iron level, smear, etc., were drawn. The hematologist wanted to run some genetic test on his blood which have very specific parameters for drawing so we had to wait until Thursday morning for those and then he could get the transfusion. We ended up waiting until Thursday afternoon for those labs to be drawn. After that we had a doctor come in and tell us he was being discharged and didn’t need to have the transfusion right now. However, my mom and I were really unsettled with that and we both pushed to have the hematologist come down and see us so we could ask questions. She was able to stop in and used a visual aid to help us understand a little bit more about what is going on. Basically, Magnum’s bone marrow is not producing enough red blood cells. She said he very few baby red cells and his current mature red cells are not sticking around very long so something is causing them to have trouble maturing. After seeing how pale Magnum was she said she definitely wanted to do the blood transfusion and then in a couple weeks we will see her again for the results for the genetic tests.
What is the main thing the doctors are looking for?
Right now the hematologist is searching for a rare genetic mutation called Diamond Blackfan Anemia. Diamond Blackfan Anemia (“DBA”) is a rare inherited bone marrow failure syndrome, characterized by a failure of the bone marrow (the center of the bone where blood cells are made) to produce red blood cells.
Is there a cure for DBA?
Diamond-Blackfan anemia can be cured by having a transplant of blood-forming bone marrow from a healthy donor. This treatment helps your child’s bone marrow make normal blood cells. However, because DBA is inherited anyone in the family will have to be cleared from carrying the mutation before they can be considered for a bone marrow donation.
What is the next step?
Our next step is waiting for lab and genetic test results. Once those come back we will have a better knowledge of what we are facing. If he does have DBA, the next step in testing is a bone marrow biopsy. This will help the doctors identify his HLA markers. A bone marrow donor needs to match at least six of his HLA markers. Siblings have best chance of being a match. Then extended family. Then unrelated.
PLEASE CONTINUE TO PRAY FOR:
• Wisdom for the medical team on his case.
• Strength and comfort for Magnum.
• Strength, peace and wisdom for Shawn and myself.
• Strength, understanding and comfort for Remi and Cadee. They know “their” little baby is sick and it bothers them.
• Magnum’s happy go lucky personality does not change because of all of this. (Some have said bone marrow transplants can change the patient’s personality.)
~ Magnum’s Family ~