Thursday, June 14, 2012

June 13th- Game Plan

We are living out our very worst nightmare where all of our efforts are all for nothing. Instead, our sweet baby had to endure 10 days of chemotherapy followed by 27 days of horrible tasting medicines, unspeakable pain, mouth sores, hemerroids, and terrible homesickness for what? I am still in SHOCK and just really don't understand how this happens? We have researched BMTs for 4 years now and according to the doctors here they have only had 1 bmt failure in 3 years and they tweaked the chemo formula and have not had failure since then??? And on national average, the chances of failure is around 5%? It seems like nothing has worked in our favor for the past several years and now we will always have this dark cloud hanging over our heads until who knows when? I just have a lot of bitterness and grief and worry - the 'normal' life that we were looking forward to is not to be. It breaks my heart to have to tell Connor that this did not work - how does a 7 year old who has summoned all the courage and bravery that he has to take his meds, to follow doctors orders process that it didn't work? I just don't know how he will handle this news and I don't even know when to or how to break it to him. I just feel terrible that we exposed him to more risk of secondary cancers, that his own immune system may now be more compromised than before, and who knows what it did to his mental, emotional and spiritual state? We are not even back to square one, it feels as if we have taken a major step backwards and our options are more limited. The tears just flow randomly and I can honestly say that I have never been this down in my entire life. AND how do we make a decision to have another BMT? and if so where? it is just too much... Well, we met with the doctors this evening and they had no explanation as to why his did not engraft, they just said that it happens sometimes. SO we asked if he could get a boost from the donor but they said that this is not an option, the chances of it helping is very low and there are risks b/c he will need more chemo. There is nothing left for us to do but wait for his own cells to grow back and build up enough of an immune system for him to be able to go home. Our only consolation is that his immune system seems to be coming back whereas in some cases the body's immune system does not come back and they are left with no choice but to get another bone marrow transplant. They are stopping all the immunosuppressant drugs (to prevent GVHD) and our one hope for a miracle is that there may still be a very small percentage of donor cells in his bone marrow and that they may be able to grow a little bit, they told us not to expect this to happen. They are also stopping the GCSF so we will see how much his counts go down and they will go down. We are not sure when we will be able to get home - we are just stuck here waiting and knowing that this has failed, it really is so hard to be patient and to endure all of this. Connor is in good spirits and he is off of all pain meds. He is in a very good mood and coming back to his old self and taking the meds has become a little easier for him as well. I know that so many of you have been anxious all day so I wanted to share the same info that we received today. A friend told me that in times like these, we can turn away from God due to all the troubles or we can choose God. In the past week, I have really really tried hard to choose God. I know that there is a divine plan that we are not aware of and I also know how fortunate we are despite all of this but at this moment I am just really angry, bitter, sad and confused and it really is so difficult to choose God. Please continue all efforts to register more asians to the bone marrow registry. Besides a miracle in the next month or so, Connor will most likely need another bone marrow transplant if we can find a perfect match sooner rather than later. The median age of survival for his disease is 25 years old, the clock is ticking and because of this bmt failure, it is more critical than ever to find a perfect match. Good night.

23 comments:

Maggie, Wes and kids said...

Speachless.... sharing your pain... sending our love

TD said...

I have no encoragingp words. I don't even think they'd be appropriate. This is so unfair. So unreal. you go ahead and be angry, be rage full...both of you. This sucks so badly. Everything about this is just devastating...
Teri

Anonymous said...

Hurting for you. I can't even come close to imagining the pain and anger.

Praying, praying, praying. Wish there was more I could do. But please know that I keep praying.

Stacey Hartman

Peter Cho said...

Could not sleep last night as our hearts are aching for you and grieving with you. We are still praying though in faith. All things are possible.

Love, Peter & Kim

Kathy said...

Your game plan is forming. You will find a way. I have faith in you, Sue.

Tara Charney said...

Thank you for sharing the journey and your honestly. So sorry the BMT didn't take. Hope Connor is well enough to go home soon. Sending prayers and positive thoughts.

Jacquelyn said...

This news is just heartbreaking. I have only met Connor a few times at cub scouts and recently heard about what he is going through. Since then I have been following your blog obsessively. We have been praying and praying and asking others to pray with us. I know that God would agree that this isn't fair and it might not ever make sense. However His love is there no matter what, even if the only way you can see that is through the love you have for Connor. God is love. I will do whatever I can to ask people to register as donors. As a mom my heart is breaking for him but you as well. There really are no words that are adequate but we will continue to pray.

Jacquelyn said...

This news is just heartbreaking. I have only met Connor a few times at cub scouts and recently heard about what he is going through. Since then I have been following your blog obsessively. We have been praying and praying and asking others to pray with us. I know that God would agree that this isn't fair and it might not ever make sense. However His love is there no matter what, even if the only way you can see that is through the love you have for Connor. God is love. I will do whatever I can to ask people to register as donors. As a mom my heart is breaking for him but you as well. There really are no words that are adequate but we will continue to pray.

JG said...

Praying for your boy and family

Natalie Flood said...

Lucikly, Connor is young and has some time to find a solution. But all that work and pain and suffering - for what? That sucks! I wish I could send you a punching bag so you could let all your frustrations and anger out in a productive way. Totally appropriate to feel the way you feel. I'd have my doubts too. But don't let it last for long as you need positive thoughts and energy to work on making Connor healthy again. Sending him tons of candy this week to enjoy and share with his new friends. I have everyone around me praying for him. One co-worker went to church and lit a candle and said a prayer for him.

Katy said...

We have no yet met, but I just wanted you to know that I have been praying for Connor for awhile now. My son was in Connor's Awana group this past year and is in the same grade at Patton (they have not yet been in the same class).
A group of moms got together on Wednesday morning and prayed together for Connor, for you and for Steve. I just wanted to share to say how many people love you all so much and care so much and are here to support you through this, however that now looks. We will continue to pray and continue to bring people TOGETHER to pray for you. My heart absolutely breaks for you. Our kids pray for Connor every night. We will send some cards soon. I am just so so sorry and sad for this latest news. I will continue to follow your blog constantly and not only pray on my own, but we will continue to have several people coming together in prayer for him and for your family and for the team of doctors. Oh how my heart aches for your family.

Glenna [next door] said...

question Steph--------if he has a perfect match is there still a chance of #2 BMT? ?

Jennie said...

KEEP FIGHTING! I know that probably is a bigger request for you guys than to climb Mt. Everest right now. In fact,it's like you're climbing DOWN Mount Everest as Connor's immune system returns and you eventually get to go home. There is hope, many people climb Mt. Everest more than once, right? Peace to you and may each day bring healing- physically, mentally and spiritually.

Grace Yu said...

Can i help and see if there is a perfect doner in Korea.? I live near Yonsei Severence Hospital. Would the chances be greater in Korea to find a perfecf BMT match? My prayers and tears and frustration are with you. Blessings and more blessings on the Lims

Kathy said...

Hello Grace,

I'm in Korea, too, very familiar with Yonsei Severance, and began looking into the process of doing donor drives in Korea before Connor found his donor. If a perfect match needs to be found and the chances are higher in Korea, then wanna join forces?? From my understanding, i believe Connor's chances of finding better matches are higher with Asian, especially Korean donors.

My email: skatkim@hotmail.com
Phone: 010 5576 9515

Feel free to contact me anytime.

Anonymous said...

My heart breaks for you right now - I will join in all the prayers for you and your family.

Anonymous said...

We love Conner, you and Steve. We are praying and thinking of you every minute.
John and Shannon

Anonymous said...

Tonight while we were praying for Connor, I made the mistake of praying for "little" Connor. Colin bolted up and said, "Mom, you can't call him little Connor, he's the toughest kid I know." Sean and Meghan chimed in their agreement and I had to say my prayers more accurately on behalf of tough guy Connor. He is tough...although we wish he didn't have to be. Love you all, Heather and Steve.

402Neighbor said...

Steph,

I'm Kim Cho's sister - I've been following your blog, thank you for sharing with us your pain so honestly.

My family and I are praying for you. I'm so sorry for your heartache as a mom, and for all the pain that Connor has suffered.

He is a such a strong, inspiring boy.

Jenna

Anonymous said...

Steph,
I'm Kim Cho's sister. Thank you for your honest updates.

My family and I are praying for you, and we are so sorry for your heartache as a mom, and for all the pain that Connor has suffered.

He is an inspiring strong boy.

Jenna

Gina said...

Stephanie -
Wondering how you and Steve are holding up... Heartbroken for you but hoping for another way, a new solution, or some crazy breakthrough! We think of you every time Sam puts on his gym shoes - hand-me-downs from Connor! Love you guys and praying for you, especially Isaiah, Sam and Micah at night :)

~ Gina

Lisa Daley said...

Choose God! We just lost our Anna May 8th to complications post transplant on 4West after nine months to the date of continuous infections,pain, hopes only dashed.. Embrace every moment and thankfully he is not in pain and good spirits. Despite our loss we trusted God's plan and trusted what was best for Anna. My grieving heart of the loss of our only child can only tell you how sorry I am for the cross you are asked to carry as well. Anna is no longer in pain. No longer worries will she start living life only to relapse again in a year. No longer questions why we did the transplant to only remain hospitalized with agonizing side effects for 121 days post transplant.

We may never understand Why? But Ii understand Where and Anna chose God rather than earthly life.

Celebrate each moment and know others are praying for your family that have walked in your footsteps. Friends of Andrew and Joe's.

Lisa

Danielle Vickers said...

Stephanie, me heart hurts for you! I am so sorry to hear this news. I will fight hard to get more Asians registered and continue to pray for Connor and you.