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.
Tuesday, May 10, 2011
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.
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.
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
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
Friday, April 8, 2011
It's a pole competition...
So it's been a busy few days, exciting but busy. Our family is in town. So we have been going 100mph.
We have a praise report! They ran a few more test to check the cycle of the virus' and she had none!! The doctors are shocked. We aren't because we know we serve a mighty God. Now we wait for a final virus test to confirm the negative.She completed the riboviran which was the breathing treatment that required the tent. She had her final dose today at 4pm. Dree is so excited that part is over!!!
Okay so those of you who know me, well you know I have a very competitive side. So in the transplant wing we are allowed to decorate our (IV)poles. It's one of those things that we can have fun with and one of the few things we can control! So let the decorating begin, we've seen a few and plan to outdo them all!!! I'll post a picture of our pole when we are done. Wish us luck!! Dree started painting, She is so cute she made me go get some supplies. She is really enjoying it.
We got some flowers today and a twilight movie. Thank you everyone, we love you all and miss you all so much!! I am so amazed at how God works. We got a nurse who graduated from APU and attended CCV in high school. I've gotten 4 or 5 calls from local believers who have friends that attend CCV. God is amazing and so are all the people he uses to encourage us. She got such a boost from Pastor Jeff and all the cards, and emails and guestbooks emails. She knows she isn't alone, or forgotten. She is seeing God move and stands back in awe. Yes, she pouts and gets sad, and yes sometimes she thinks this sucks but all in all she is okay. All the nurses love her. God asked her to share her faith with one of the nurses, so I'll let you guys know, how that turns out because she is being very insistent with this nurse so I am sure God has a purpose. She loves to share her faith but never imposes it but she is being pretty persistent with this particular nurse,so we will see what exciting, unexpected outcome we get.
She is so 14, sometimes I tend to forget because her faith makes her so mature but I was reminded as we watched the sermon online on Sunday and she screeched so loud "OH MY GOSH MOM, did you see, Jeremiah Mullins is wearing my bracelet!!!!! He didn't take it off mom!!! She is so funny!
We won't know were we are in the transplant process until we confirm the negative, also we are waiting on another CT scan, and Pulmonary function test next week. Once the results come back from those test we will sit down with the doctors and review our plan going forward. Please continue to pray for Gods will in our lives and his presence. We miss you all!!! We love you guys, and may God bless you all!!! I apologize for the rant and scattered thoughts. I wanted to give you all an update but I'm also really tired. Good night and have a great weekend everyone!
Do not be afraid of the terrors of the night, nor the arrow that flies in the day. Do not dread the disease that stalks in darkness ,nor the disaster that strikes at midday. Though a thousand fall at your side, though ten thousand are dying around you, these evils will not touch you.
Psalms 91:5-7
We have a praise report! They ran a few more test to check the cycle of the virus' and she had none!! The doctors are shocked. We aren't because we know we serve a mighty God. Now we wait for a final virus test to confirm the negative.She completed the riboviran which was the breathing treatment that required the tent. She had her final dose today at 4pm. Dree is so excited that part is over!!!
Okay so those of you who know me, well you know I have a very competitive side. So in the transplant wing we are allowed to decorate our (IV)poles. It's one of those things that we can have fun with and one of the few things we can control! So let the decorating begin, we've seen a few and plan to outdo them all!!! I'll post a picture of our pole when we are done. Wish us luck!! Dree started painting, She is so cute she made me go get some supplies. She is really enjoying it.
We got some flowers today and a twilight movie. Thank you everyone, we love you all and miss you all so much!! I am so amazed at how God works. We got a nurse who graduated from APU and attended CCV in high school. I've gotten 4 or 5 calls from local believers who have friends that attend CCV. God is amazing and so are all the people he uses to encourage us. She got such a boost from Pastor Jeff and all the cards, and emails and guestbooks emails. She knows she isn't alone, or forgotten. She is seeing God move and stands back in awe. Yes, she pouts and gets sad, and yes sometimes she thinks this sucks but all in all she is okay. All the nurses love her. God asked her to share her faith with one of the nurses, so I'll let you guys know, how that turns out because she is being very insistent with this nurse so I am sure God has a purpose. She loves to share her faith but never imposes it but she is being pretty persistent with this particular nurse,so we will see what exciting, unexpected outcome we get.
She is so 14, sometimes I tend to forget because her faith makes her so mature but I was reminded as we watched the sermon online on Sunday and she screeched so loud "OH MY GOSH MOM, did you see, Jeremiah Mullins is wearing my bracelet!!!!! He didn't take it off mom!!! She is so funny!
We won't know were we are in the transplant process until we confirm the negative, also we are waiting on another CT scan, and Pulmonary function test next week. Once the results come back from those test we will sit down with the doctors and review our plan going forward. Please continue to pray for Gods will in our lives and his presence. We miss you all!!! We love you guys, and may God bless you all!!! I apologize for the rant and scattered thoughts. I wanted to give you all an update but I'm also really tired. Good night and have a great weekend everyone!
Do not be afraid of the terrors of the night, nor the arrow that flies in the day. Do not dread the disease that stalks in darkness ,nor the disaster that strikes at midday. Though a thousand fall at your side, though ten thousand are dying around you, these evils will not touch you.
Psalms 91:5-7
Saturday, April 2, 2011
Meanwhile what?
He will once again fill your mouth with laughter and your lips with shouts of joy.
Job 8:21 NLT
Meanwhile what? What shall we do while we are in the valley waiting for the miracle? Obviously depression, doubt and guilt are in very fertile ground in the valley. How do you stop these emotions from growing like deadly weeds in your heart. You pray, then when you think you can't pray anymore you stop and pray some more...
So I haven't updated in a bit, guess when your in the valley sometimes its hard to share, hard to get out of self. So I apologize to all of you who have called and text and I haven't responded. I'm sorry.
It's been a pretty rough week. We are hospitalized now and it seems that we will be here for the duration of our stay. Dree hates being confined to the hospital, she can handle a busy day. She can run around from hospital to clinic and back. So when we got a call saying she had 2 active viruses and we needed to meet the doctors at the hospital and we would be there to stay, Well she cried.
The gleam in her eyes and her brilliant smile have been gone. She asked me why God hates her. I responded with encouragement, and she said "your my mom, it's your job to tell me God loves me".
The transplant will be delayed by a few weeks. They have to give her a full course of antibiotics to treat the viruses. They won't biopsy the mass in her lungs until the viruses are gone. They don't want to put her under while she is sick. So we wait, and then wait some more. She is in isolation. She isn't allowed to leave her room. She has to do a breathing treatment under a tent for 2 hours every 8 hours. My little girl is weary... she is sick and tired of being sick and tired. We miss home, we miss our family and our friends. So we pray... and pray some more.
Job 8:21 NLT
Meanwhile what? What shall we do while we are in the valley waiting for the miracle? Obviously depression, doubt and guilt are in very fertile ground in the valley. How do you stop these emotions from growing like deadly weeds in your heart. You pray, then when you think you can't pray anymore you stop and pray some more...
So I haven't updated in a bit, guess when your in the valley sometimes its hard to share, hard to get out of self. So I apologize to all of you who have called and text and I haven't responded. I'm sorry.
It's been a pretty rough week. We are hospitalized now and it seems that we will be here for the duration of our stay. Dree hates being confined to the hospital, she can handle a busy day. She can run around from hospital to clinic and back. So when we got a call saying she had 2 active viruses and we needed to meet the doctors at the hospital and we would be there to stay, Well she cried.
The gleam in her eyes and her brilliant smile have been gone. She asked me why God hates her. I responded with encouragement, and she said "your my mom, it's your job to tell me God loves me".
The transplant will be delayed by a few weeks. They have to give her a full course of antibiotics to treat the viruses. They won't biopsy the mass in her lungs until the viruses are gone. They don't want to put her under while she is sick. So we wait, and then wait some more. She is in isolation. She isn't allowed to leave her room. She has to do a breathing treatment under a tent for 2 hours every 8 hours. My little girl is weary... she is sick and tired of being sick and tired. We miss home, we miss our family and our friends. So we pray... and pray some more.
Wednesday, March 30, 2011
What to look forward to...
Typically I start my post with a scripture that Dree and I have shared but today it seems more appropriate that I share this way. I asked God what was too much to share, what nugget was ours to keep and his response well- Phil 4:8 ...what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.- So now I am called to share everything that falls into those categories. Some of what I share may not always seem to fit, like hurt or doubt but in the end it will so I am left with being as honest and transparent as I can be. I will bear my soul and glimpses of hers. I will do my best to try and give you my perspective on this journey and when she allows hers as well.
Dree has asked me very bluntly might I add "What do I have to look forward to after this journey mom." For a few days I was stumped. I had no answer, so I began to pray about it, As I got out of the elevator it just came to me. "Well, Adrianna you have a whole life ahead of you, a life God may bless you with to fulfill his purpose and be a display of his splendor. A life meant to glorify him". Then I laughed and for a second wanted to take all the credit for such a simple brilliant answer but I couldn't, and so I won't. I also realize that that wasn't the answer she was looking for, but that's what I got.
She is 14, she gets sad, lonely and even angry. She longs for peers, for a father. She wants to dance,sing and be normal. I know some people think its wrong to question God, but haven't we all had those moments. We have had a tough start to our second week. Some complications. Worry and fear has crept in but it has been kept at bay. Yes, there are tears but there is also laughter and love. In the midst of this battle we have joy.
We are being able to see God in such tangible ways, feel his unfailing love and his mercy and grace. I really can't find the words to describe it, you have to have felt it to understand it. I read her all the texts, cards and post we get, she doubts how long people will care, struggles with trusting who will stick around, but she also knows we are all human and we are all fallible. She knows we will all in the end fail her at one point-- even me. She also is beginning to see and feel, and know there is someone who won't. Even when life gets busy, or tough even gut wrenchingly painful, she has-- but to be still, and listen and hear that quiet voice full of love and truth.
Dree has asked me very bluntly might I add "What do I have to look forward to after this journey mom." For a few days I was stumped. I had no answer, so I began to pray about it, As I got out of the elevator it just came to me. "Well, Adrianna you have a whole life ahead of you, a life God may bless you with to fulfill his purpose and be a display of his splendor. A life meant to glorify him". Then I laughed and for a second wanted to take all the credit for such a simple brilliant answer but I couldn't, and so I won't. I also realize that that wasn't the answer she was looking for, but that's what I got.
She is 14, she gets sad, lonely and even angry. She longs for peers, for a father. She wants to dance,sing and be normal. I know some people think its wrong to question God, but haven't we all had those moments. We have had a tough start to our second week. Some complications. Worry and fear has crept in but it has been kept at bay. Yes, there are tears but there is also laughter and love. In the midst of this battle we have joy.
We are being able to see God in such tangible ways, feel his unfailing love and his mercy and grace. I really can't find the words to describe it, you have to have felt it to understand it. I read her all the texts, cards and post we get, she doubts how long people will care, struggles with trusting who will stick around, but she also knows we are all human and we are all fallible. She knows we will all in the end fail her at one point-- even me. She also is beginning to see and feel, and know there is someone who won't. Even when life gets busy, or tough even gut wrenchingly painful, she has-- but to be still, and listen and hear that quiet voice full of love and truth.
Saturday, March 26, 2011
Ending our first week...
And I will do whatever you ask in my name, so that the Son may bring glory to the Father. You may ask me for anything in my name, and I will do it.
John 14:13-14
So our week has been busy to say the least. I was unable to hold off more blood draws, so she received a few more pokes but she was a trooper. They will need to harvest some of her current stem cells in case the transplant doesn't take. Which means a bone marrow aspiration is necessary. She is unable to use the new method because the medicine they use to enrich the blood stream with stem cells has side effect that are too risky to try at this point. So Monday afternoon at 12:45pm she will be in surgery, for an old fashion bone marrow aspiration. As some of you may know this is extremely uncomfortable. Monday she will also be getting her central line (Hickman). This will make her life much easier, they will be drawing her labs from there so no more pokes..Yay! They will be harvesting her marrow just in case the transplant doesn't take. I pray and ask that you all please pray for no pain and that the transplant and all the procedures that it entails go as painlessly and as smooth as possible.
Now that I'm done with all the medical jargon time for some personal sharing.
I see my beautiful daughter and I am so amazed that that beautiful smile never leaves her face. So many people ask, How do you keep that smile? Her smile broadens and she says I just do. I am amazed by how God's hand has been through this journey every step of the way.
Dree has made a friend which is such a great thing because she really has no peers. Most of the time she is too tired but she has mustered up energy to just hang out. I often wonder or I guess worry about her, Is she lonely? Does she miss being a kid? She is so shy and quiet, and keeps so much to herself. She has asked what is feels like to be in love, and what if feels like to kiss a boy. I know she misses dancing,jumping,running and playing. I know she longs to see the world. I don't know what God has planned for her but I do know that she is walking the path she is supposed to. I know that God has not given her more than she can handle. She smiles and I look into her eyes and see the joy and peace that surpass all understanding... So I shake off the worry and the doubt, and the sadness. Then I too smile...
John 14:13-14
So our week has been busy to say the least. I was unable to hold off more blood draws, so she received a few more pokes but she was a trooper. They will need to harvest some of her current stem cells in case the transplant doesn't take. Which means a bone marrow aspiration is necessary. She is unable to use the new method because the medicine they use to enrich the blood stream with stem cells has side effect that are too risky to try at this point. So Monday afternoon at 12:45pm she will be in surgery, for an old fashion bone marrow aspiration. As some of you may know this is extremely uncomfortable. Monday she will also be getting her central line (Hickman). This will make her life much easier, they will be drawing her labs from there so no more pokes..Yay! They will be harvesting her marrow just in case the transplant doesn't take. I pray and ask that you all please pray for no pain and that the transplant and all the procedures that it entails go as painlessly and as smooth as possible.
Now that I'm done with all the medical jargon time for some personal sharing.
I see my beautiful daughter and I am so amazed that that beautiful smile never leaves her face. So many people ask, How do you keep that smile? Her smile broadens and she says I just do. I am amazed by how God's hand has been through this journey every step of the way.
Dree has made a friend which is such a great thing because she really has no peers. Most of the time she is too tired but she has mustered up energy to just hang out. I often wonder or I guess worry about her, Is she lonely? Does she miss being a kid? She is so shy and quiet, and keeps so much to herself. She has asked what is feels like to be in love, and what if feels like to kiss a boy. I know she misses dancing,jumping,running and playing. I know she longs to see the world. I don't know what God has planned for her but I do know that she is walking the path she is supposed to. I know that God has not given her more than she can handle. She smiles and I look into her eyes and see the joy and peace that surpass all understanding... So I shake off the worry and the doubt, and the sadness. Then I too smile...
Thursday, March 24, 2011
Procedure- Where we are in the process...
Arriving at SCCA
Once your donor (or you, for an autologous transplant) has been prepared, you will come to SCCA.
- First visit: First, you will meet with your doctor and nurse to discuss your health history, have a physical exam and blood draw, get a tour of the transplant clinic, get consent forms to review and receive your “Patient & Caregiver Resource Manual.”
- Arrival conference: The next day, you’ll have your arrival conference. You will meet with your doctor and other members of your team to discuss your individualized treatment plan. Every transplant patient at SCCA is cared for by a team that includes an oncologist, a fellow or physician’s assistant, a registered nurse, a pharmacist, a dietitian and a social worker. Your doctor will explain the transplant process, talk with you about the benefits and risks, and answer your questions.
- Evaluation for transplant: Over the next one to two weeks, you will have a thorough evaluation to confirm your diagnosis and evaluate your health to determine whether you are ready for a transplant. Your evaluation will include tests and imaging procedures, such as blood tests, bone marrow aspiration and biopsy, chest X-rays and an electrocardiogram. Throughout this process, you will be an outpatient.
- Data-review conference: After your evaluation, you will have a data-review conference. Your doctor will meet with you to discuss the results of your evaluation, answer your questions and get your consent to proceed with your treatment.
- Education: You and your caregiver will complete classes and get individual instruction on topics like what to expect during the transplant process, how to manage symptoms once you return home and how to maintain proper nutrition so your caregiver can help you through the process.
- Donor: If you have a related donor, this person will be with you, and we will evaluate your donor’s health at this time. If you will have an autologous transplant, this is when we will collect your PBSCs or harvest your marrow to freeze and store for use in your transplant.
Day 1
So I've kinda committed myself to writing this blog, both as an update and a journal. For those of you who may not know Dree (pronounced like TREE with a D) is my nickname for Adrianna, She hasn't ever liked it --but thats one of the advantages of writing this, that I can name it what I want muuuahahah. Also, I must write a disclaimer, I will do my best to write as often as possible this might get easier the further along into the process we get but our days are pretty hectic now, and another side note. I am not going to worry about grammar because if I do ill never get this done. So, please bear with me.
Therefore, put on every piece of God's armor so you will be able to resist the enemy in the time of evil. Then after the battle you will still be standing firm. Stand your ground, putting on the belt of truth and the body armor of God's righteousness...and take the sword of the spirit, which is the word of God. *** Eph. 6:13-14,17 NLT
Day 1 Ok, so our flight was chaotic- to say the least. Erwin was searched and made to touch and test each and every can of Dree's formula and all her meds. Then after an extensive amount of testing and frisking, we were cleared through security. We where lead by an airline concierge to gate 10, We looked around Keira (our 2yr. old) was gone. We finally located Keira in the candy shop with both hands full of M&M's. Oh and I forgot to mention I left Dree feeding pump on my dining table, Ugh! but we boarded the plane anyway.
He put on righteousness as his body armor and placed the helmet of salvation on his head. He clothed himself with a robe of vengeance and wrapped himself in a cloak of divine passion.*** Isaiah 59:17 NLT
Day 2 Our day starts at 7am Full battery of tests needed so Dree is poked and prodded, I had to stop them at 3 pokes, She had enough and was in full tears at this point. They didn't get enough blood for all the test, so I am fighting to get blood test pushed back until they they have a central line put. We wrapped up at the doctors around 4pm. Now, as you can imagine, We don't get to do much as a family because Dree is limited to any public exposure. We stopped prayed and decided as a family we needed to do something fun-- We took the Duck tour. For those of you who are not familiar with what that is, like me, until today . It is a tour bus that tours Seattle both by land and water. Interesting to see this big bus float. The girls had a blast but by the end of the tour we were all exhausted. So back to our comfy room at the Ronald McDonald house and off to bed we went!
Therefore, put on every piece of God's armor so you will be able to resist the enemy in the time of evil. Then after the battle you will still be standing firm. Stand your ground, putting on the belt of truth and the body armor of God's righteousness...and take the sword of the spirit, which is the word of God. *** Eph. 6:13-14,17 NLT
Day 1 Ok, so our flight was chaotic- to say the least. Erwin was searched and made to touch and test each and every can of Dree's formula and all her meds. Then after an extensive amount of testing and frisking, we were cleared through security. We where lead by an airline concierge to gate 10, We looked around Keira (our 2yr. old) was gone. We finally located Keira in the candy shop with both hands full of M&M's. Oh and I forgot to mention I left Dree feeding pump on my dining table, Ugh! but we boarded the plane anyway.
He put on righteousness as his body armor and placed the helmet of salvation on his head. He clothed himself with a robe of vengeance and wrapped himself in a cloak of divine passion.*** Isaiah 59:17 NLT
Day 2 Our day starts at 7am Full battery of tests needed so Dree is poked and prodded, I had to stop them at 3 pokes, She had enough and was in full tears at this point. They didn't get enough blood for all the test, so I am fighting to get blood test pushed back until they they have a central line put. We wrapped up at the doctors around 4pm. Now, as you can imagine, We don't get to do much as a family because Dree is limited to any public exposure. We stopped prayed and decided as a family we needed to do something fun-- We took the Duck tour. For those of you who are not familiar with what that is, like me, until today . It is a tour bus that tours Seattle both by land and water. Interesting to see this big bus float. The girls had a blast but by the end of the tour we were all exhausted. So back to our comfy room at the Ronald McDonald house and off to bed we went!
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