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Tuesday, May 10, 2011

A new perspective...

Here’s a new perspective for you. This time its Keri writing, I and my mom flew up on the 6th and we will stay till the 26th. I am so happy to be here and to be spending time with Scarlett and Adrianna but we are having our ups and downs. Today Adrianna went through full body radiation and she’s not feeling too hot, she’s been pretty nauseous and throwing up since we got back to the Children’s hospital and the medicines not doing much to help stop it. Tomorrow we start day 0! She will get her transplant at noon; luckily it can be done in her room. I feel like Adrianna’s spirits are up and they have been since we got here. Even though these next 2 days are going to be really rough, she seems to be ok mentally.
On an easier note, since I’ve been here we’ve gotten to have some fun. With a photographer that took pictures of us all messing around, and me and her painting while listening to music like Justin Bieber, Hannah Montana, and Jeremiah Mullins and just getting to hang out every day. It’s been 5 days and she won’t let me leave her side (not that I care) but even to eat, I get death glares. I have stayed every night but one and when she sleeps I busy myself, and when she’s awake we watch TV, talk, paint, play pranks on our mothers, take small walks, and just have fun.  I sit here at 845pm and think about this little girl that has taken my heart and become one of the most important, strongest people I know. I have been here in Seattle for 5 days and I always see a smile (or smirk) on her face. I feel like I am constantly in awe of her strength and I strive to have half as much as she does. For all 4 of us these next couple of days/weeks are going to be difficult but I know combining the strength that each one of us posses we will get through it. As I think about my most recent tattoo, that I got for Adrianna “For she is far more precious than jewels” proverbs 31:10 I think of how accurate it is. This beautiful, strong, stubborn, and pure hearted little girl is so much more precious than jewels. Watching her heart and her strength throughout this all gives me hope to continue.
Right now Scarlett is finally getting the sleep she so desperately needs, and Adrianna is sleeping off the medication and resting from the radiation today, as I’m sure resting for the big operation tomorrow. Earlier today she wasn’t feeling well and she was very nauseous, since then all she has done is sleep and she seems to be feeling better.

Thursday, May 5, 2011

So it begins...

Day -6 

A skin test will be done at 8am to see if there is any adverse reaction to h-ATG. If there is no reaction conditioning will begin today. So it's official the countdown begins. So it counts down from Day -6 thru Day Zero. Day Zero is the transplant day: May 11, 2011.

Day -6 thru Day -1:

Conditioning:
Chemotherapy, and radiation

Day 0
Transplant






Overview- Medical Jargon


Overview of Dree's procedure

I went ahead and cut and paste Adrianna's procedure just so everyone knows exactly what is going on.  I will be sending brief updates via text or Facebook. Also after this post I will post a more personal outline and what our next week will look like. Please keep us in prayer we love you all and miss you dearly! 

Low-dose chemotherapy and radiation, followed by a stem cell transplant that uses umbilical cord blood as the stem cell source, in patients who cannot tolerate a standard transplant treatment. Standard transplant treatments use higher doses of drugs and radiation and different types of drugs.



The doses  of chemotherapy and irradiation therapy you receive are low and work to suppress the cells of the immune system so that the new cells can grow in or engraft.  This type of transplant will rely on the new  immune system to destroy the remaining  cells.  In this type of transplant, there is a time when there is a mixture of your immune system and the  donor’s immune system.  This is called mixed chimerism.   



Treatment for autoimmune diseases may include drugs that suppress the immune system as well as therapies that target specific organs affected. There are no known cures for autoimmune diseases. In some cases, however, stem cell transplants are used to prevent the progression of the disease and to lessen symptoms.



Conditioning
To treat blood or immune system diseases using a transplant, doctors first give the patient chemotherapy, radiation, or both. This process is called Conditioning.


Chemotherapy
Using high-potency drugs that target quickly dividing cells and destroy them. Some of the healthy cells (such as hair follicles, cells in the lining of the mouth and intestines and normal bone marrow stem cells) are also quickly dividing cells, so they are killed as well—their destruction results in some of the side effects patients experience.

Saturday, April 30, 2011

Why is it...

Why is it that no one ever tells you being a Christian will be the hardest thing you ever do in life. I mean we all know Peter and he well, he is clear but when I read his letters to the Corinthians, well I think gee that's them. That's the old times. Well it isn't. Its here it's now. Being Christian takes hard work, it's not some mindless devotion, or blind following.

I choose Jesus. Everyday, sometimes every minute. I fail in my walk every day sometimes every minute but I get back up and try again. It takes effort to go against what I feel like doing to do what is right. It takes everything I have to hold on to him and his promises when everything screams just let go, It takes hard work to do his will and to hold on. No, I am not always happy and no life isn't always what I thought it would be but "Better is one day in your courts, than a thousand elsewhere;" This is truth.

Ahhhh, the joys of bonding.

So as you all may know this journey isn't always rose colored and all peachy keen. Some times it can get UGLY, lol because we are human and well we fall short, duh! Basic Christianity 101 right. So we are on a shuttle ride back home after 3 appt. and a tooth extraction. We have just been told that, we have a Saturday appt. at 11:30 am. I know my daughter very well, so I can tell she is upset to hear this. Also She is 14 so she isn't really to concerned about hiding the fact that she is irritated. For those of you with teenagers, I'm sure you know what I mean. Eye rolling, you know the works. So she turns her lil' glare (wonder where she got that from huh?) at me and says " Why do you do that, isn't it enough that we are here monday-friday now you want to be here on the weekends to." followed by " I am going to give you the silent treatment now ok, so don't talk to me".  Ok, those of you who know me, well you know that I wanted to smack that child from here back to California, but I didn't and like a good lil' momma, I turned around and yelled in my head. Then I prayed, then I text a friend.

I get it she is sick, and she is tired. There isn't much she can control. I get it. So, I try to explain that I get it, of course she ignores me. I try to explain that I am just given the appointments, that I too have no control.....Ahhhh the joys of motherhood.

Wednesday, April 20, 2011

Abba...

Where to begin. My family left this morning. I was a mess. My heart hurt in so many way, that words are not enough to describe it. So Lord, I know I've asked time and time again to be given a heart of flesh and for you to remove the heart of stone, but does it need to hurt so much, I mean this new fleshy heart  hurts, maybe I'll grow into it. I think that's your hope too. Lord I am struggling here. I am tired. I'm tired. She is tired. This limbo state is making us weary. I know Abba  , Your sovereign but I really need you to make your will clear to me, so I know that I am doing your will and not my own.  Abba, ya think I might be able to get a prophet? Ok, ok thats a little too much I know but I just need to know. I need to know that I know. We are here because I believe you opened the door. I know that I've fought to get here but I know I've continued to pray your will over this situation and over my life. She needs your comfort Lord, please she hasn't felt your presence in a while. Please Abba wrap your arms around her. She loves you Lord but she is tired, and I get it Lord because so am I. I know that you have plans for us, plans to prosper us and not to harm us. We just can't see the forest for the trees right now. Our souls yearn, even faint for the court of the Lord. Our hearts and our flesh cry out for the living God.  I am so eternally grateful, for each day Lord I really am.  Each day I am humbled by your grace and mercy. I choose to rest in you tonight Lord, for how lovely is your dwelling place. I choose to believe in your promises and I choose you. Good night Abba, I love you with all of my heart (my new fleshy one ) and all of my soul...

Monday, April 18, 2011

Peaks and valleys..

I'm so sorry I've been neglectful. I am committed to this blog but am also trying to spend as much time with my family as possible. So let me begin with all the medical stuff. Adrianna had 2 ordinarily benign viruses, but in her state, they were potentially life threatening--she was immediately admitted and was placed in isolation for 11 days. She had a CT and they discovered a mass in her lung. 16 days later no more mass, no more viruses. The doctors tested her 3 times because the thought they were getting false negatives.  She passed her PFT (pulmonary function test) with flying colors and will not need to take that test again. Before the transplant can proceed, we need to get a few cavities filled and because of the disease this is not easy and she needs to be fully anesthesized. We have been discharged back to the Ronald McDonald House for now, and are waiting to resolve the dental issues before we move forward. So tomorrow hopefully we hear from the the dental team and may possibly get an actual "day zero" transplant date.

We are grateful for all your thoughts and prayers and all the encouragement everyone is sending via email,text, FB, and snail mail. They keep us going. I will be adding a photo album soon.

I have often wondered why? Why our family?  We already have enough trouble without this disease invading and destroying. My alcoholism, and various other hurts habits and hang ups continue to wreak havoc but why this too? Well actually to be honest I have come to terms with the disease, but at times now struggle really with the waiting, the delays, the limbo. I ask myself and God what lesson am I missing, is this a consequence of sin? Are we missing a step?

Ultimately, God gives us a sense of peace and does not allow us to be devastated by these questions and doubts.  HE sends us constant reminders that we are where we need to be.  And keeps us moving forward--wherever "forward" may be.  Please keep us in your prayers.  Our family depends on it.


"Forget the former things; do not dwell on the past. See, I am doing a new thing!"
Isaiah 43:18-19