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.
Wednesday, March 30, 2011
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!
Subscribe to:
Posts (Atom)