I don't think I really understand the lyrics to that song but all of a sudden the tune came to me today as I was holding Bela in the hospital. I hummed the tune to her and told her she is a fighter and we will fight this together.
I have thought of many songs while holding her there except for "I Will Survive", which I just thought of. Some of the songs I've sung repeatedly to her are songs of VICTORY, HOPE, JESUS and His BLOOD that heals and forgives and that it will replace Bela's bad blood. Songs of praise, blessings, and God's faithfulness.
We've already felt so much love and support though so many people, even people we don't know. It is so encouraging to know we're not alone in this and there are literally 100's, maybe thousands (with the way facebook works) of people around the world praying for us and Bela.
We've decided to dub Bela our little "Nacha Libra" which is grammatically wrong in spanish and includes a made up word, but is our little feminine version of "Nacho Libre", an authentic example of a true fighter who never gives up.
Today we had another meeting with the hemotologist. We learned today that Memorial is very blessed to have him. He just moved here four months ago from Davis, CA. We went over all the details of the two research studies we are going to volunteer for, the treatments, their schedules, and all of the side effects, which are almost more scary than the cancer itself.
For now we just learned mostly about what the next month will look like. Hopefully Monday the surgeon will be able to insert into Bela a central line (see yesterday's post) and do another bone marrow biopsy. Also on that day they hope to begin the chemo into her spinal column.
She will receive the standard chemo and POSSIBLY a new drug related to the research study. Participants are chosen at random to receive that drug or not.
The first month for all patients is the same and starts with the lumbar puncture and the spinal fluid is then analyzed for leukemia. The drug inserted there is called Cytarbine. Then she gets systematic therapy: 20 doses (10 every 12 hours). She gets two other drugs, one over 5 days and the other 3 times in 3 days.
This treatment will kill leukemia cells and give out toxins into her blood. They will probably have to give her anti-vomiting meds and a non chemo drug to flush her system of the toxic chemotherapy. They will monitor her blood for many days and she'll enter supportive care because she'll be at high risk for infection and will be given drugs against those. She'll be moved into her own room in the oncology unit where there are all kinds of specialists to help with her development in the future.
Other aids she may need are a feeding tube, more blood products like platelets, red cells, and 4-5 antibiotics for things like fever. She may lose her appetite and her immune system will change.
General side effects we were told include hair loss, vomiting, mouth sores (for which there's pain meds), fevers/diarreah, attack to the immune system, and possible damage to liver and kidneys, which they'll monitor. Then of course there's the possibility that even after being in remission for a long while the cancer can come back. One reason being her exposure to the radiation that is trying to help cure her now! That is so unsettling to me.
The type of leukemia found in Bela's blood is extremely rare. There are only 3 or 4 cases of it now in the US and all of those have down syndrome, so Bela is a very unusual case. We were warned today that we have a very hard road ahead of us. During each recovery period after each round of chemo her body will be sick fighting its own infections and fungai.
A few good things that Bela has on her side are that girls are known to respond better than boys, it is treatable, and her age. We are encouraged to have heard already stories of recoveries and survivors still in remission.
Please pray for...
1. Us not to worry, or go crazy, or be weak, or not be afraid to be weak, to stay close to God and to each other. My thoughts negatively snowball looking at the side effects and thinking about all the possibilities in the future.
2. That Bela can have the first round of procedures all at once so she doesn't have to go under anasthesia more than once: placement of the central line, biopsy, and insertion of chemo into spinal column.
3. Protection of her development, her brain, and her heart.
Thanks be to God for all of you!
I have thought of many songs while holding her there except for "I Will Survive", which I just thought of. Some of the songs I've sung repeatedly to her are songs of VICTORY, HOPE, JESUS and His BLOOD that heals and forgives and that it will replace Bela's bad blood. Songs of praise, blessings, and God's faithfulness.
We've already felt so much love and support though so many people, even people we don't know. It is so encouraging to know we're not alone in this and there are literally 100's, maybe thousands (with the way facebook works) of people around the world praying for us and Bela.
We've decided to dub Bela our little "Nacha Libra" which is grammatically wrong in spanish and includes a made up word, but is our little feminine version of "Nacho Libre", an authentic example of a true fighter who never gives up.
Today we had another meeting with the hemotologist. We learned today that Memorial is very blessed to have him. He just moved here four months ago from Davis, CA. We went over all the details of the two research studies we are going to volunteer for, the treatments, their schedules, and all of the side effects, which are almost more scary than the cancer itself.
For now we just learned mostly about what the next month will look like. Hopefully Monday the surgeon will be able to insert into Bela a central line (see yesterday's post) and do another bone marrow biopsy. Also on that day they hope to begin the chemo into her spinal column.
She will receive the standard chemo and POSSIBLY a new drug related to the research study. Participants are chosen at random to receive that drug or not.
The first month for all patients is the same and starts with the lumbar puncture and the spinal fluid is then analyzed for leukemia. The drug inserted there is called Cytarbine. Then she gets systematic therapy: 20 doses (10 every 12 hours). She gets two other drugs, one over 5 days and the other 3 times in 3 days.
This treatment will kill leukemia cells and give out toxins into her blood. They will probably have to give her anti-vomiting meds and a non chemo drug to flush her system of the toxic chemotherapy. They will monitor her blood for many days and she'll enter supportive care because she'll be at high risk for infection and will be given drugs against those. She'll be moved into her own room in the oncology unit where there are all kinds of specialists to help with her development in the future.
Other aids she may need are a feeding tube, more blood products like platelets, red cells, and 4-5 antibiotics for things like fever. She may lose her appetite and her immune system will change.
General side effects we were told include hair loss, vomiting, mouth sores (for which there's pain meds), fevers/diarreah, attack to the immune system, and possible damage to liver and kidneys, which they'll monitor. Then of course there's the possibility that even after being in remission for a long while the cancer can come back. One reason being her exposure to the radiation that is trying to help cure her now! That is so unsettling to me.
The type of leukemia found in Bela's blood is extremely rare. There are only 3 or 4 cases of it now in the US and all of those have down syndrome, so Bela is a very unusual case. We were warned today that we have a very hard road ahead of us. During each recovery period after each round of chemo her body will be sick fighting its own infections and fungai.
A few good things that Bela has on her side are that girls are known to respond better than boys, it is treatable, and her age. We are encouraged to have heard already stories of recoveries and survivors still in remission.
Please pray for...
1. Us not to worry, or go crazy, or be weak, or not be afraid to be weak, to stay close to God and to each other. My thoughts negatively snowball looking at the side effects and thinking about all the possibilities in the future.
2. That Bela can have the first round of procedures all at once so she doesn't have to go under anasthesia more than once: placement of the central line, biopsy, and insertion of chemo into spinal column.
3. Protection of her development, her brain, and her heart.
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| Enjoying a date with Santi. We went to the bookstore and saw Madagascar 3. |
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| Holding hands |
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| "Fist Pump!" |
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| "Give me milk!" |
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| Her private suite. No ocean view though. |
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| Singing with dada |
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| Such a camara hog! |
Beto and Laura,
ReplyDeleteBella is absolutely beautiful and completely in our prayers. May the Gentle Healer heal her, provide you both with strength and peace and give Santi some understanding and comfort. We love you guys.
Praying,
Dawnette
Thank you Dawnette. How did you hear about our blog? God bless you.
ReplyDelete