Last night wasn't so bad. I feel like I got some good sleep in. The pull out couch was pretty comfy. Bela moaned and groaned a lot though, not like she was in a lot of pain but just very uncomfortable. I got to bottle feed her at 5am and got up at 8:30 when my aunt arrived. They have kept Bela on Morphine or Tylenol today and on anti-nausea meds. She is eating, peeing, and pooping well.
They tried to put in a catheter today. They do that because if pee stays on her skin too long in the diaper the chemo that flushes out in her pee can burn her skin. They couldn't put in a catheter though because she has a hernia and she is very swollen. The doctor said the hernia isn't a big deal, is probably just uncomfortable, and they will surgically fix it later whenever they have to put her under for something else in the future. I was happier about that though because it puts her at less risk of infection and will be more comfortable for her. I am not worried about her skin because one of us in the family will always be there. As good as the nurses are, they do have other patients, so they can't be checking her diaper every 30 minutes.
Her abdomen is hard as a rock and very distended because her spleen is so large. By as early as this weekend it can be a lot softer with the chemo. The doctor also may place a PICC line (an internal permanent IV in her arm leading up through her neck) soon to give her meds,etc. so that she doesn't have the flimsy hand or foot IV's.
She was very hungry and uncomfortable this afternoon. She began her first round of chemotherapy. There are four chemo drugs, plus pain meds and anti nausea. The doctor said she will probably be very cranky tomorrow. This first round takes about 10 days and not all four drugs are given all at once.
SOME VERY GOOD NEWS: After taking another look at her spinal fluid, the doctor said there is NOT any leukemia in her spinal fluid!!! Praise God!!! They probably hit a blood vessel and took a tiny bit of blood and saw the leukemia in that.
Another piece of good news is that because of two research studies we enrolled her in, she was chosen at random by a computer to receive a new experimental drug that is safe and isn't a placebo. I was praying for this and am thankful to God because I think it just gives her that much more treatment and opportunity for successful recovery.
It will be a few weeks until we know more exact details about her leukemia and exactly how risky it is. The results of her bone marrow biopsy will also guide the doctors as to the best treatment.
Please pray for Bela to be comfortable and without pain. The doctor said today he has seen patients who "sail through" treatment and I pray Bela is one of them. The side effects from the chemo are usually worse than the treatment itself. Please pray that in the future she won't need a bone marrow transplant and that her leukemia will never return.
and please pray for her heart and brain to always be protected. there is one medicine that is known to sometimes cause heart damage and of course there is a medicine against that too. they will be monitoring her heart and all her organs so if they ever think the chemo is just too damaging they will lower the dosage of meds, take her off of them and try a different course. But please pray with us that she will do well so that they can give her the treatment she needs and God will heal her soon.
Today one our favorite nurses from the NICU came up to visit Bela. She picked her right up and treated her like she was one of her own. The staff really is like a family and they have made us feel so cared for.
They tried to put in a catheter today. They do that because if pee stays on her skin too long in the diaper the chemo that flushes out in her pee can burn her skin. They couldn't put in a catheter though because she has a hernia and she is very swollen. The doctor said the hernia isn't a big deal, is probably just uncomfortable, and they will surgically fix it later whenever they have to put her under for something else in the future. I was happier about that though because it puts her at less risk of infection and will be more comfortable for her. I am not worried about her skin because one of us in the family will always be there. As good as the nurses are, they do have other patients, so they can't be checking her diaper every 30 minutes.
Her abdomen is hard as a rock and very distended because her spleen is so large. By as early as this weekend it can be a lot softer with the chemo. The doctor also may place a PICC line (an internal permanent IV in her arm leading up through her neck) soon to give her meds,etc. so that she doesn't have the flimsy hand or foot IV's.
She was very hungry and uncomfortable this afternoon. She began her first round of chemotherapy. There are four chemo drugs, plus pain meds and anti nausea. The doctor said she will probably be very cranky tomorrow. This first round takes about 10 days and not all four drugs are given all at once.
SOME VERY GOOD NEWS: After taking another look at her spinal fluid, the doctor said there is NOT any leukemia in her spinal fluid!!! Praise God!!! They probably hit a blood vessel and took a tiny bit of blood and saw the leukemia in that.
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| Quality time with her aunt Glenda |
It will be a few weeks until we know more exact details about her leukemia and exactly how risky it is. The results of her bone marrow biopsy will also guide the doctors as to the best treatment.
Please pray for Bela to be comfortable and without pain. The doctor said today he has seen patients who "sail through" treatment and I pray Bela is one of them. The side effects from the chemo are usually worse than the treatment itself. Please pray that in the future she won't need a bone marrow transplant and that her leukemia will never return.
and please pray for her heart and brain to always be protected. there is one medicine that is known to sometimes cause heart damage and of course there is a medicine against that too. they will be monitoring her heart and all her organs so if they ever think the chemo is just too damaging they will lower the dosage of meds, take her off of them and try a different course. But please pray with us that she will do well so that they can give her the treatment she needs and God will heal her soon.
Today one our favorite nurses from the NICU came up to visit Bela. She picked her right up and treated her like she was one of her own. The staff really is like a family and they have made us feel so cared for.
Laura,
ReplyDeletePraise God for no leukemia in the spinal fluid!! We're praying for her hernia and catheter, PICC line, her comfort, treatment, that she will "sail through", that God protects her heart and brain always (physically and spiritually), total healing, and praise for great nurses! We're praying for you, Beto, and the whole family.
Psalms 139 Examíname, oh Dios, y sondea mi corazon; ponme a prueba y sondea mis pensamientos. Fíjate si voy por mal camino, y guíame por el camino eterno.
Dios esta cuidando a Bela, su corazón, mente, y todo su cuerpo porque él la hizo bellísima!!
Muchisimas Gracias amiga! Fue una bendicion hablar contigo por telefono ayer. les amamos mucho.
DeleteLaura and Beto,
ReplyDeletePraising God for no leukemia in the spinal fluid!!! We are praying for your beautiful little girl. Praying for angels to be with her always, and that she will be one of those who flies through the treatment. We are praying for you guys too. That God will give you all the strength you need and the comfort can peace that can only come from Him and the Holy Spirit in you. Thank you for sharing this journey and allowing us to share and pray for Bela.
Blessings and Love to you,
Brenda Gomez
Thank you Brenda! we love and appreciate you so much
Delete