Sean's Leukemia Fund - #Life4Sean
His life drastically changed overnight, as did our whole family. We wish we could say this is a short journey and easy "fix", but in fact this is just the beginning.
His hospital stay began on October 27, the day after his diagnosis. After the first week in the hospital, which included a dangerous fight with pneumonia and other complications that delayed his cancer treatment, Sean had his first chemotherapy treatment on November 3, almost a week behind the doctor's anticipated start date.
Sean’s last treatment for this 1st "round" of chemo is scheduled for December 1, when his 28-day protocol will be complete. He will have another bone marrow biopsy the following day to determine the success of this round, and will continue in the hospital until his blood levels have reached the minimum "safe" levels in order to be released.
We are also waiting to get Bekah's blood test results, which will determine whether she is a match for bone marrow transplants for Sean. There's only a 25% chance of match so please pray for this! Depending on whether Bekah is a match will determine the next 3 to 5 years of treatments for Sean.
Sean will continue with treatments for the following 6 months after round one, but we won't know whether he will return for in-patient or out-patient treatments until later.
We are standing in faith for God to heal Sean, and trusting Him in this process.
Jeremiah 29:11 says,
“For I know the plans that I have for you,'
declares the LORD, 'plans for welfare and
not for calamity to give you a future and a hope.”
Just as the Lord is declaring this over Sean, so are we! My children and I, and their spouses and children are united in prayer, faith, and love, standing with Sean in every way possible in this battle. For us it's a journey of hope and love, stretching and tension, & faith mingled with tears.
We want to thank you all for your prayers and financial gifts, and ask that you continue to pray, give if you are able, and share with others so they may have the opportunity to do the same.
Lastly, I continue to declare Psalm 121 over Sean:
1 “I will lift up my eyes to the mountains;
From where shall my help come?”
2 “My help comes from the LORD,
Who made heaven and earth.”
3 “He will not allow your foot to slip;
He who keeps you will not slumber.”
4 “Behold, He who keeps Israel
Will neither slumber nor sleep.”
5 “The LORD is your keeper;
The LORD is your shade on your right hand.”
6 “The sun will not smite you by day,
Nor the moon by night.”
7 “The LORD will protect you from all evil;
He will keep your soul.”
8 “The LORD will guard your going out and your
Coming in from this time forth and forever.” Amen
Thank you all!
It's been a month since I last wrote an update for you. I guess one would be inclined to guess "no news is good news," but in reality no news in this case is usually not that. I can't say there is no hope, or that we have lost hope, but on a daily basis it is really hard. I tried to write an update, and even asked a friend to write one for me, about a week ago. I was so tired in every way, and discouraged.
But my hope is in the Restorer of All Things, Jesus, Who loves us unreservedly, and believes in us even when we have no strength to believe in Him. That may sound shocking but… we can say we believe in Him, God of all creation, Lover of Our Soul, the Beginning and the End, and yet there are places in our heart that are tried and tested because we don't walk in 100% total faith in Him, in every situation, every dream, in every hope of our hearts.
And you are thinking, “What does this have to do with Sean's update?” Well, a lot. We are weary in the battle, tired of the trial, and maybe lacking in courage. I know I am, as Sean's mom and caregiver. And Sean, who has gone through in 17-months more than most of us will endure in a lifetime, is weary. If we go back and read some of the previous updates, even view the pictures in them, we see a young man full of life who has suffered so much, yet has been so brave... even when he could not walk, or eat, or even smile. And through this journey many have prayed, given, loved, but many have grown weary of the battle as well.
A few days ago I wrote a text to my daughter-in-law, mother of my beloved 5-year-old granddaughter who is also fighting Acute Lymphoblastic Leukemia, sharing my heart with her as we talked about another young man who has been diagnosed with T-cell A.L.L. like Sean…
“I think that every day my heart breaks more and more, and the weight of the crushing is more than anyone should bear. And to hear that someone else will go through this and quite possibly die crushes me even more…. Everyone’s in pain, and fear. Sometimes I try to remember what it was like when Alex and Sean were well and we would have barbeques, or Alex would come hang out with me or even spend the night, and we would walk Oscar & Hashtag and do fun things. And you guys would go out with your friends, and go camping, and Sean would go on his adventures…I guess the human heart and spirit is stronger than we think, because under this crushing we still live and breathe and move and try to function, welcome new life, and try to build a life for ourselves and our families. But today it feels so unbearable…”
So with that, we continue to fight, to search for answers, to pray. Sean is working hard to change his diet, and we continue to research.
Sean stopped with the supplemental doses of chemo about a month ago due to the dangers of it causing more cancer and new types of cancer. At this point the leukemia is growing again, a bit slower at the moment. As of March 8 was at 41% in his peripheral blood (up from 31% the week before), which means the leukemia is increasingly producing in his bone marrow. There are also clear indications that it is choking out the healthy cells on a much more intensive level and causing a more severe level of severe anemia (and side effects), or maybe more severe effects of anemia that one would see in someone who has had severe anemia for 2+ years. We have increased some of the supplements to try to counteract that, and have added a few new things to help with other issues he’s been dealing with, including high levels of uric acid, which can cause damage to the organs.
Even with these facts we still choose to believe God has a plan. We continue to pray for strength for Sean as he does his part, and for provision so I can do my part, and for God to do what only He can do. We do not accept the doctor’s word that he will die, but ask God to give him more life, healing, and victory in this battle.
We also ask you to pray in agreement for these things, with faith believing in the Creator of the Universe and His good for Sean. And we ask you to continue to give so that Sean will continue to have the supplements and care he desperately needs. (His monthly supplements & medications cost approximately $884 each month, not including tax and any needed shipping.)
I humbly ask that: if you have not given please give now, and if you have given before, please give again. It is very costly to have a long term illness, especially this rare and aggressive cancer.
Every dime that has been generously donated has gone directly to Sean’s care. I ask you to give for his needs for this month. Your gifts make more of a difference than I can express, but I do thank you sincerely for them! You can give through this Go Fund Me account for Sean, or through Sean’s PayPal account that goes directly to his donation fund for his needs. If you’d like to give through PayPal contact me and I will share the email address with you.
Thank you for your love and support of Sean.
Thank you for your love and support of our family.
Lisa and family
It's been a while since I've written an update... a lot has been going on with Sean during that time. If you’ve been following Sean’s battle and reading updates you know the rollercoaster ride this has been, and you know that there is no medical cure for Sean. The doctors have declared his condition terminal. We continue to give him a number of alternative treatments, supplements, and a few prescription medications... and we continue to pray for a miracle. I have updates below but first I want to thank you for being there for Sean and his needs through this battle. I also want to tell you what his needs are right now. As long as he is alive, and willing to fight, I must do all that I can.
THANK YOU for partnering with us in Sean’s fight.
In December I wrote about some specific needs Sean had for supplements, etc. Thanks to your support I was able to purchase the diffuser, Meeker Red Raspberry Seed powder (which should last at least 3-4 months), essential oils for December and January, and CBD costing $630 for 4 weeks for January.
THANK YOU all who helped make that happen!
Some of you have generously purchased a few of the alternative treatments/supplements directly for Sean, and we’re so grateful!
I am purchasing the rest and am in great need of your help again to continue providing these for Sean.
Here is a list of Sean’s Monthly treatment/supplements/needs & costs for his care right now (though he has other needs, these are immediate):
B12, $17.99, 1-mo. supply
Oregano oil, $29.00, 1-mo. supply
Ginger - $21.57, 1-mo. supply
Beta 1,3D Glucan, $69.00, 1-mo. supply
CBD, $595.00, 1-mo. supply
Probiotics, $39.99, 2-mo. supply
Lactoferrin, $23.00, 2-mo. supply
ALA, $20.97, 2-mo. supply
Chlorella, $14.99, 3-mo. supply
Garlic oil, $8.99, 4-mo. supply
FulviMax, $49.97 – 1 mo.; $134.91 for 3 mo. supply
7M Plus, $49.95 - 1-mo.; $83.90 - 2 mo. Supply; $223.00 – 4 mo. supply
Protandim, $50,1-mo., paid for by a generous friend
Potassium & Magnesium, covered by insurance
If you are able to HELP with these needs you can give through GOFUNDME or PAYPAL (using my email, or a link I can give you), or contact me to purchase any of the above items for Sean. I have specific brands that Sean needs, and links to websites to purchase any of these items directly for him.
THANK YOU so much for your help! I can’t add my email to this update as GoFundMe erases links and email addresses from updates. If you don’t have my contact info you can contact me through my Facebook or Sean’s Facebook page (just search Life4Sean), or you can leave a comment on his GoFundMe page.
Update on Sean:
In January, with the help of the Dear Jack Foundation, we were planning to fly out to Kansas City (January 12th for a week) so Sean could see his friends. We had to cancel those plans when he started getting sick with a lung infection. It was a real disappointment to Sean, but he was so very sick that it was necessary.
Sean eventually began to heal, thanks to oxygen, all the medications and supplements he’s taking, and your faith-filled prayers! A few days after Sean's lungs began to clear up he began to get sick again, this time with a throat infection. He is doing better but still has a slight cough, and is vulnerable to other infections.
On January 18th the doctor said without chemo, and as long as his breathing is stable, he might have only 2 weeks to live. On January 22 Sean began taking the oral chemo because he was in so much pain from the high level of leukemia in his body.
In the past 1-1/2 weeks Sean has received 2 pints of blood and a unit of platelets. His body is fighting as much as it can, and the supplements and your prayers make a huge difference. He sleeps a lot and has short days though.
His blood work this week showed 29% leukemia blasts in his blood stream (down from 69% last week and 72% two weeks ago). The small dose of oral chemo has brought the levels down. It also causes a lot of side effects including destroying healthy blood.
The doctors want him to go into hospice but it only provides comfort care, and no treatments for low blood counts or any peripheral illnesses. Sean wants to be able to get treatment if he needs them, and have access to transfusions as well. Thankfully the doctor recently referred Sean to palliative care. Our hope is they can be advocates on his behalf when he needs transfusions or other medications. It has been stressful having to continually press the doctor for care that would easily be given for a non-terminal patient.
One of Sean’s requests of the Dear Jack Foundation was to have a family holiday. Tomorrow we leave for a 5-day holiday with all five of my children, my 2 daughters-in-law, son-in-law, and 2 grandchildren. Sean, and all of us, are so excited about this trip! We will be on the coast of California and hope Sean can really enjoy the time with his brothers & sisters etc. It is a much needed break from the day-to-day struggles Sean has.
We don’t know what tomorrow holds, but put our trust in God for all He has for Sean. Please continue to PRAY for Sean and please partner with us and GIVE towards his needs.
Thank you and God bless you!
Lisa & family
Sean has had a very, very rough week. He started getting sick last Monday, which developed into a lung infection (probably pneumonia). We have not yet found out exactly what's going on because the doctor is not willing to do a chest x-ray or any testing to make a determination. They only treat cancer patients if they are 1) not dying, and 2) are in agreement of whatever treatments the doctor wants to prescribe.
Sean, according to doctors, has a very short time left - a few weeks, a month, maybe a few months. Therefore unless Sean agrees to chemo they will not treat any peripheral issues such as infection, etc.
Because of that, his Kaiser doctor ignored my emails for 2 days while I asked for oxygen for Sean. Sean was having difficulty breathing, pain in his chest, and at times felt he could not breathe at all. He has had a history of pneumonia so I am used to the symptoms and ready to act when this happens. Finally, when I reached out to his Stanford BMT doctor, I got a response to my, and Sean's, request for oxygen from the Kaiser doctor.
He now has been on oxygen for the last few days and is able to breathe better. He still has pain in breathing, and coldness in his chest. I've added oregano oil capsules and garlic capsules to help with the infection, and a few other things. We are dependent upon any homeopathic or alternative treatments we can find at this point. Thankfully Sean's temperature is finally steadily normal for the last 2 days. He is sleeping better with oxygen as well.
Sean is clearly still fighting infection so I am very thankful for all your prayers for that. Also, I still would like testing to find out what exactly is going on in his lungs. Please pray that the doctor would actually do what's necessary to find that out.
We've been giving him Beta Glucan for about a week. It helps to build his immune system. He has been without a strong immune system for such a long time, and with the chemo and radiation his immune system has been severely compromised. I am praying that God would infuse him with a new and strong immune system and be able to fight properly. I believe this prayer is being answered.
The level of leukemic blasts in his peripheral blood (blood stream) was 55% last Tuesday. His WBC was 62,000+. When the leukemia is found in the blood stream that means there is so much leukemia in his bone marrow that it begins to spill over into his blood stream. Needless to say, the percentage of blasts in his bone marrow is far higher than 55%.
With that, what else can we do but believe that GOD IS GOOD, and His mercies ARE new EVERY morning, and trust Him for the outcome. I feel faith rising up when I see my son so very sick, yet not losing hope, believing God, and not growing weary of heart. He may die... someday. But not today. And as long as today is called today we will bless the Lord and Sean will live. God is so much bigger than any doctor, or diagnosis, or sickness. We don't know what tomorrow holds... but, though it may sound cliché, we truly know Who holds tomorrow! The doctors can deny care, (and they will be duly rewarded for their actions), but God will be glorified in Sean's life, and in all our lives. Sean's strength is not what we hope for, but he does not waver.
-> Thank you for continuing to stand with us in PRAYER.
-> Thank you for continuing to GIVE of your finances for Sean's needs.
-> Thank you for continuing to REACH OUT and LOVE Sean and our whole family.
PLEASE PRAY FOR:
-> Sean's complete and total healing and restoration
-> Help from a committed doctor
-> Proper care of his peripheral needs, i.e.: infections, etc.
-> Financial provision for therapies, supplements, and any other needs
-> Rest and peace for Sean and our family
-> And for my beloved granddaughter Alex who is also fighting ALL
God bless you all!
Lisa and family
Thank you to those who have donated recently. It's helped us to get a few of the needed supplements and things I mentioned in the last update. We still need the rest though so give if you can, and pray. We are so grateful!
Sean is fairly stable, (well his blood levels are), though they are low. He is having a number of symptoms, and exhaustion from time to time. It's hard to see him decline. BUT, We're still praying for a miracle!
I'm planning a trip to Kansas City for Sean to see his friends. It's so important to him. The doctor said to plan for things now - for the next month or so, especially since the percentage of leukemia blasts in his blood stream is increasing. It's at 11% right now and we're grateful it's not more. But Dr. Muffly said it could explode at any time, so this trip must happen in the next few weeks.
Though this is not a medical need, I'm asking anyone who is able to PLEASE help us with this trip by giving financially. The Dear Jack Foundation is providing our round trip tickets, which is so wonderful! But we still need to pay for our housing, which will be approximately $500 for the week, and for a car rental, which will be $300 for the week. The Scotland trip was very expensive, and thankfully dear friends from our ZHOP days donated to help us finish the trip well. (Thank you Belinda!) as a result we really need your help with this trip for Sean.
***If you'd like to give towards our trip through Go Fund Me, please write "KC" in the comment section when you're donating. Or if you'd prefer, you can donate through PayPal using my Consecrated.Art account (it's gmail).
I used to feel bad asking for donations, but now realizing we don't know what the future will look like, and my son's life is more important than my pride, I ask unashamedly PLEASE HELP! PLEASE GIVE!
This could be a chance for Sean to say goodbye to dear friends he grew up with in KC... (tho we hope still for a miracle). Thank you for praying. Thank you for giving. It means more than I can say.
Lastly, we a blessed to have a fundraiser at TRADEMARK PIZZA in Roseville on this Tuesday, JANUARY 10. Please join us, with your FLYER (can be found on Sean's Life4Sean page on Facebook). They will only give 20% of sales when the flier is shown at purchase. Thank you!
God bless you all as you give and as you pray!
Lisa & family
I'm so sorry to hear that Sean has not been feeling well....definitely praying for improvement and a miracle healing from God our Father. In the name of Jesus, I pray.....
Lisa, we are standing with you and Sean... and continue to pray and believe for Sean's complete healing. We claim, with you, that Jesus' sacrifice on the cross was more than enough! Sean's healing has been purchased in FULL and cancer has been defeated. Cancer must GO in the Name of Jesus! I love you and your family! Give yourself permission to live in our "bubble" because we refuse to believe any report except for one: that Sean with live and not die and he will proclaim the goodness of the Lord to the ends of the earth! ♥