At 8 am PDT, Jesse and I headed for the hospital. Her labs were drawn, and we started our waiting for the results.
The results are not good. Her bilirubin total has jumped to 6.9. To put it bluntly, her liver is failing. And Jesse does look more yellow to me.
The doctor left to call our home doctor and nurse. She also ordered labs drawn to check Jesse’s clotting factors and other blood counts.
While she was gone, the research nurse helped me find a flight. We will leave at 10:10 pm PDT. Pass through Charlotte, and arrive in Richmond at 8:45 am. After securing the flight, she contacted the social worker. The social worker has arranged our ride to the airport, contacted the airline and TSA, and offered to help in any other way we can think of.
As we were confirming those details, the doctor popped in to let me know she was gathering Jesse’s records from Seattle for me to carry to CHKD. I asked her about giving Jesse a shot of neulasta, much to Jesse’s dislike. If we can’t do the T-cells, might as well cheat on the ANC while we can.
Her labs returned shortly after the doctor left to check with pharmacy about whether Jesse could have neulasta 3 days off chemo. (Luckily they said yes.) Jesse’s hemoglobin has dropped to 7. Her blood clotting factor produce by the liver are very low. We decided to give Jesse a blood transfusion. The doctor recommended we go to our home clinic on Friday to check platelets. She feels that Jesse’s platelets should stay about 30 at this point (they are 71 currently, but dropping).
We are waiting for blood to finish. We will then return to RMH, clean up, repack, settle our bill, and wait for the cab to pick us up.
Had to laugh (though I really hope it is not the truth) at 4:30 pm because the fire alarm went off. Now we have been at Seattle… they have had a fire alarm. Can’t seem to go anywhere without one.
They have given Jesse benedryl for nausea, and she is sleeping. I am pretty positive that she barely slept last night.
I have purposely waited to make this post live. Why? I am honestly not in the mood to talk a great deal currently about what is going on. What am I going to tell you besides what I have posted here?
I get that this is a real bummer. I was looking forward to her and Chris growing up more than anyone (besides Mike… and that is questionable because he fears them deciding to attend an out-of-state college), but God is calling her home. I can only place this in His hands for His decision to be made. I am thankful for the time she has been ours. And I am still not sure how much time she has. I do know, I do not want her to suffer. And I don’t want to trap her here on Earth in a body that is failing her in very painful ways when she is obviously ready to go.
I do hope that she has a few more moments of feeling good to enjoy and make great memories. And I am thankful for the week of camping we got at the end of June.
Thank you everyone who has bought a shirt to help support our medical costs. And thank you for donating to the GoFundMe account. We will still have medical costs at home from treatment to help keep Jesse’s pain reduced. Plus other hospice type care she will receive in the coming days.
I don’t view this as giving up. Jesse’s T-cells will be used for research in hopes that maybe, just maybe they will save the life of someone else. Her involvement in all the research studies will help other patients. The cure sadly might not be for her, but hopefully her suffering will save someone someday. And we have tried to give it our all.
I don’t have the words…I can only give my deepest love and endless prayers…
hi, I’m Leah I’m 12 year old and I live in Lincolnton,NC. Allison Ruby is my best friend and she has told me all about Jessie , I just wanted to let u know what an inspiration she is to me and how she is such a little fighter, just please give her my best wishes, and tell her that she is truly amazing. We are all praying for her,
From, Leah Tweed
Thank you Leah. I know you & your family have been praying with us since Day One. Love you!
Thank you Leah!!!! Love you so much!!!!!
Our hearts are breaking for Jesse and your family. She is a shining star for our Norge family and I know her life has and will continue to serve a greater purpose, whether here or in heaven. May God bless Jesse and your family. My thoughts and prayers are with you all.
My prayers are with you all. I pray especially for lots of strength for your family. There are no words,
May Gods arms surround you with love and prayers. You and Jesse are the strongest people I know. In Christian Love. Donna McKown Martin
Hi.. We are friends with Laura and Glen. Have been praying and keeping up with Jesse for awhile now. I admire all of you for your strength through all of this and pray her last days will be easy ones.
God bless you!
This update is devastating to read….and I can’t even imagine how you are feeling having to type it. There truly are no proper words. I will continue to pray for you, Jesse, and your family.
Susan, Mike, Chris and Jesse. I have followed you sine the day I met you at CHKD. You are in my prayers. If there are any spiritual needs any of you want to discuss, call me. You know I’m in 5he same county. I am here to pray, offer presence and whatever you and your family may want or need.
Your dear family continues to be in my heart and prayers.
You don’t know me, but our kids go to the same school & my daughter knows yours. She’s been rooting for Jesse all along, as have I. We will continue to keep her in our prayers. My heart breaks for your family.
Always thinking of you and Jesse and what a wonderful family yall are. Jesse is a special little soul and everyone who has gotten to have her in their lives is so much better for it. I feel so lucky I got to be one of those people. Sending so much love your way, Reina
I remember back to a time when you and Mike were just young parents; before any of this awfulness began. You were an easy friend to make and it was easier yet to see what a great parent you would become. Nobody would ever wish for you and your family to have been tested to these limits but rest assured, you have lived admirably with all that has been thrown your way. You have set an example few of us could imitate and exuded love to Jesse and the rest of your family. Jesse is a remarkable little girl who has taught me a lot! Thoughts and prayers to you all.
My heart is literally breaking right now. Not only for you, Soosan, but for all four of you, and definitely for all of us. For everyone that knows and loves Jesse. I want to go on record and say that you are thee most proactive, knowledgeable, dedicated, and educated mother in existence. Jesse is as lucky to have you as a mother and you are to have her as a daughter. The prayers are definitely continuing.
Praying for comfort during this difficult time. Continue to fight Jesse, your one brave young lady.
Dear Jesse, I love you so much!!! There is always hope. God knows what’s best for you. He has a plan for you. Just believe and trust his plan. We will continue to pray for you. I love you Jesse Grace
Praying for your sweet girl and family
Soosan,
My prayers are with you. You are an amazing mother. I know Jesse has touched many lives. We will continue to pray for God’s strength and peace to envelop you all.
Allison Ruby was at camp with our youth group a couple of weeks ago requesting prayer for her sweet cousin Jesse. Please know that we continue to pray and believe God for Jesse and your family. May God grant you all the healing and strength that you need for nothing is impossible with Him.
Our prayers are with you and Mike and the family. lil Jesse is one of Gods Angels, reading this saddened my heart for you, but I’m praying for your strength to endure, for you have been thru a lot, I pray for your peace that surpasses all understanding, I pray for Jessie to not to endure pain , but be comfortable the time she has left fighting this battle, in the name of Jesus comfort her , and keep her in your care. While we know that God is a healer whether it be here on earth or in heaven she will be healed and she will have a glorified body , dancing with the Angels. I pray for you all the name of Jesus
I am so very sorry to hear this news. I cannot find any words, except to say that the love and commitment your family has for each other is obvious to everyone that knows you. Prayers.
I am a friend of Cindy’s and have followed Jesse’s fight through Cindy’s postings.I am in awe of this sweet child and the incredible war you all have waged. I pray for peace and continued strength for you all. God bless.
I am so incredibly sorry to hear this news. As others have posted, it’s hard to even know what to say other than the fact that you are a MUCH LOVED family and our Norge family will always be there for you. You will all be in my prayers tonight and every night. Sending lots of love and prayers.
I am truly at a loss for words. I am so very sorry you are all going through this. May God grant you strength and endurance to get through this. May He hold Jesse in His arms & give you all more happy moments together. Love to you all!
This was a heartbreaking post. The tears fall as I read it. Continued prayers for peace and comfort for all of you!
We are heartbroken for you and will continue to pray that our Heavenly Father will give you all the strength and courage to face the days ahead. I am so very sorry you didn’t receive a different outcome for sweet Jesse.
THere is no doubt you all gave it your all. And you never gave up. I hope you find peace and comfort in the presence of friends and family who love you all so very much, and knowing that many who are far away physically are also wanting to wrap their arms around you too. When my dad died a friend sent me a quote that I can’t now find, but it went something like as a boat sails from shore and those left behind say goodbye, on the other shore there are others waiting to say welcome home. I took a lot of comfort from that.
I teach third grade at Norge. Over the years, I have worked with other teachers who absolutely love your family. I taught Emily H. and learned through her how wonderful and positive you all have been during the years. I am deeply sorry for the news you posted. Just know that the Norge Family will always be there for your family in the coming years. My prayers are with you as we think of Jessie and pray that she does not suffer and a cure will be found some day.
I met Jesse for the 1st time last year at the beginning of her kindergarten year at Norge. I work with Ginnie and have learned, through her, of the strength and love Jesse has been surrounded with. No words can express how sorry I am for all that you all have endured. Your family is a pillar of strength and will remain in my prayers.
Prayers for peace and comfort for Jesse and all the strength and understanding that God could possible bestow upon you, Mike, and Chris. You are an inspiration to so many and I am amazed by your courage. May God wrap his loving arms around Jesse.
I am so sorry to read this. Praying that your family finds comfort and strength in the coming days. Sending lots of love to all of you.
May you and your family feel God’s loving embrace and may it offer you comfort and solace. Please know that you all are loved and cherished. You are not alone. Please know that I am here for anything you need.
Praying for pain free days. I am so sorry that you all are going through so much. Stay strong
Jesse and your entire family are in our thoughts and prayers. Jesse ‘ s strength and courage have been and will continue to be inspiration to the entire Norge family.
Everyday I have pray for you all. God Bless you. My heart goes out to Jesse, Susan, Mike and Chris.
Mike, me and my sisters grew up one street across from each other in high school.
You are both amazing parents, kind and loving people. My heart breaks for your pain and it also smiles for your joy and the love you have for your girls.
Your family is truly an inspiration to us all. I pray for comfort for Jesse and strength and peace for you all.
xoxo
I want to send my heartfelt prayers for Jesse & your family during this most difficult time. I work at Norge and had the pleasure of meeting Jesse. She is a sweet, positive and loving young lady. I don’t have the words to express how sorry I am that Jesse has had to deal with so much on her short life. So, I will say GOD BLESS & KEEP YOU ALL! STAY STRONG JESSE! WE ALL LOVE YOU.
Susan, there are no words,and my heart breaks for your family Jessie has been so brave. My thoughts and prayers are always with your family. God bless.
Has anyone told you about Dr. Bryzinski in Houston? He has been dealing with rare child brain cancers/tumors with awesome success.
So awesome he has been fighting the FDA and even the AMA to keep his license. Thank fully he has so many successful patients…they won’t let him be shut down.
It’s NO fun dealing with anything that is making health an issue as the traditional stuff is bound to kill you…and not enough people know about the alternatives. I’m connected to some of the greatest humanitarians that Know Health and have been helping people over 40 years.
Soosan and Mike, No words can express the sorrow I feel for your family. I wrote and deleted, wrote and deleted and nothing seemed right. My prayers for all of you and my heartfelt sympathy.