Just picked Beto up from his night at the hospital. They are having trouble with Bela's central line, getting blood from it, so they had to insert an IV. This also is common in patients like her. They gave her meds to try to get the blood to go through. They also took another blood culture this morning because she's running a fever. They can't give her Tylenol because of her intestinal inflammation. So we are counting solely on your prayers and God's mercy and healing power! She was in a lot of pain last night so they gave her morphine. And today they're taking more x-rays of her chest to see if the central line is getting meds to her heart. The nurse said they'll just cross their fingers that later today when they try to take blood from her central line again, but I know that the prayers of the saints are powerful and effective!!!
Sunday, August 26, 2012
To my faithful whales...
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| A very rare occurance...Bela sleeping!!! |
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| From two days ago...she no longer has that IV on her left arm or the oxygen tube with tape on her right cheek. Updated pics to come later. |
Sorry for not blogging this past week. Nothing was wrong except that I'm exhausted and the only time I really have to sit at the computer is at night, like tonight, and then my brain just doesn't work. But I'm going to try to update you as best as possible.
She finished her first round of chemo last weekend. They immediately started her on three antibiotics "just in case" she had an underlying infection, though all of her blood cultures came back negative, thank God! The body naturally has viruses, "flora", and bacteria but when someone like Bela doesn't have the immune system to fight back, the body attacks itself, basically. So they are preventing any infections in advance.
Her blood pressure is a little better, although not good enough to take her off the meds.
She is completely off of the oxygen so they were able to take the tube off of her face, although she could've done it herself. She's getting good at grabbing. she nearly pulled her feeding tube out twice yesterday, when i wasn't looking, of course.
She isn't having what the hospital deems a "fever" anymore, so she has gone over 24 hours now without any morphine, tylenol, or adavan...yes, Adavan! She's confusing her nights and days, though, so I wish I could've been the one to have had some of that last night! And Wednesday night when I held her from 12:30am-6:30am. Let me tell you, I think that was the first time my "night of sleep" started at 6:30am and ended at 10am!
Her "team" consists again of the Gastrointestinal and Infectious Disease specialists. They figured out she is suffering from a temporary condition called Typhlitis: an inflammation of the bowels. It doesn't require meds and will get heal on its own by resting the gut, so she's off feeds again for at least a week. She is receiving nutrition and lipids through her central line and doesn't seem to be missing the milk too much. She really does have the advantage in a lot of ways because of her age. Older kids who know what food is sleep for two weeks straight because they feel so hungry. This is a common occurance in patients like her. So we just wait until her "gut"(the actual word used by all the doctors) to heal and then they can slowly start her on milk again. It could be up to two weeks.
They also always have her on anti-nausea meds and pain medicine *as needed*.
She is starting to lose her hair. You can't tell by looking at her but can see the "shedding" on her clothes and sheets. Again, her age is on her side.
The social worker reminded me this week that this is a very rocky road. there are good days and bad days. The days are long but the months are quick. There is so much support at the hospital emotionally, physically, and even financially, if needed.
So many of you have graciously offered your assistance and usually I don't even know what we need, but let me direct you to a great resource on the web:
http://www.curesearch.org/
It has all of the scientific info on "AML", acute myeloid leukemia, plus info on research, coping, and how to get involved.
Also some of you may know that we are putting together a team for "iwalk for kids" in October. It is a flip flop walk to raise money for the cancer center where Bela is being treated. We love the center and havn't met one staff member who doesn't already feel like family! Please consider joining us on the walk if you are in the area or donating towards a wonderful cause!
http://www.kintera.org/faf/search/searchTeamPart.asp?ievent=1027862&team=5168758
please let me know if the link works or not.
I've found a kids book I love, Santi checked it out at the library. It's called "Amos and Boris". It's about a mouse, Amos, who meets a whale, Boris, after his ship is destroyed in a storm. Boris saves him and they Amos spends his days on Boris' back while they talk about their hopes and dreams for their futures.
It reminds me a lot of our lives right now. Before, Amos was all alone in a scary and vast ocean, wondering how he would stay afloat. But after he met Boris, he realized he wasn't alone and Boris saved his life. Now, forgive me, for this is where the analogy breaks down a little bit, but all of you prayer warriors out there are our "whales". Your prayers, love, cards, calls, and support have kept us afloat during this storm. We are even able to keep our dreams for our family alive. But the story doesn't end there.
Boris eventually lets Amos off at his house and Amos, out of intense gratitude, commits to repay Boris one day for saving his life. Boris accepts his offer but keeps to himself his doubts about how a little mouse like Amos could ever help a huge whale like him.
But then a tidal wave from a hurricane washes Boris ashore, "coincidentally" right in front of Amos's house. Amos brings two elephants to the shore who push Boris back into the ocean, so Amos essentially saves Boris's life, keeping his commitment to repay him.
Please know that we hope you at least know how willing we are to repay all of those who have lifted us up at this time, not only in prayer (but especially in prayer), but by visiting, donating, calling, emailing, commenting, texting, etc. And when you need it we will rally our "huge elephants" (don't worry, I'm not thinking of anyone in particular) to give you a push of encouragement in the right direction. I know I'm going to lose a lot of readers since I just called you whales and elephants, but please hear my heart in this. I've learned that prayer is the most important gift one can give to another and now when I tell someone I'll pray for them, I will do it and pray as if praying for my own child. THANK YOU!!!
Now for the prayer requests...
1. Dr. Z says he and the others are still concerned that her liver and spleen are still too big. They should've gone down with the chemo. His theory is that there could be a lot of scar tissue in there. Don't expect me to explain it well. Please pray that those two organs go down to a "pleaseable" size for the doctors. They'd like to do a biopsy but cannot until her blood counts go up. Surgery of any kind right now is impossible because of her risk of bleeding and infection.
2. Please pray for her fevers to keep staying away and her blood pressure to reach normal numbers so that she can get off of the meds.
3. Pray that her Typhlitis heals completely and rapidly so that she can start eating again soon.
4. That her blood counts all reach healthy numbers soon and she continues moving speedily in the right direction so that the chemo and healing happen quickly and her doctors are amazed!
And now for the praises...
1. On her most recent blood test, no "blasts" were found! Blasts are the white blood cells that behave badly and multiply.
2. Dr. Z is very happy with how she looks and how she's doing. We are happy for positive reports from the doctors that she is headed in the right direction.
3. her abdomen is smaller and softer. We could'nt even button a 3 month onesie on her last week and now we can!
4. For friends who take us out to dinner and remind us that not just in situations like this but in everyday life Jesus commands us to take it one day at a time, "for each day has enough trouble of its own." -Matthew 6:34
Monday, August 20, 2012
Feeling "blah"
Beto spent the night last night. Beto was receiving a platelet and blood transfusion and they had to take her blood pressure once an hour, so Beto didn't get much sleep.
She was pretty tired this morning at 10:30 when I arrived. She slept until about 2:30 when Beto, Santi, and my sister Glenda showed up. Beto, Santi, and I had to get blood taken to see if we're matches to transplant bone marrow to Bela, IF she might need it in the future, which at this point they don't think she will. Poor santi just screamed and screamed and they had to restrain him, but then we told him that Bela gets poked like that many times a day and showed him some of her bruises and her central line, and he seemed very pensive. I hope that's ok and we didn't just scar the boy for life. It was amazing, though, when they walked in to Bela's room. She was really out of it but she sure perked up when she heard Santi! She followed him with her eyes and turning her head wherever he went and her eyes grew wide.
Her blood pressure is still way too high, so I met her "blood pressure/kidney doctor" today. In adults with high blood pressure the concern is usually the heart, but in kids Bela's size, the concern is with the kidneys. She is on blood pressure medicine but I'm not sure that's working well yet. It is not prescribed for a certain amount of time like antibiotics, only until she doesn't need it anymore.
She received another one time dose of Lasix today to rid her system of extra fluids. She is still on three antibiotics for a total of at least 10 days, which makes her have a stool in every diaper just about. That combined with the Lasix makes for a very messy situation. My sister had to change her shirt after her visit today. Sorry! She also received another dose of Albumin today. It's a protein that a lot of kids like her receive. She is getting Tylenol mostly for fever but I am glad she hasn't seemed to need anymore Morphine.
I'm sure there's some medicine I'm forgetting about. I really hate that she's on so much medicine. They say that the same chemo that kills the bad cells could be what causes cancer in her later in life. Of course we are praying against that! I have been thinking a lot about her diet and my diet, how that can affect her healing process and wondering if what I ate in pregnancy,or didn't eat, had anything to do with her Leukemia. I've been told I can't think like that, that it's not my fault, and I shouldn't feel guilty, but a mother still wonders.
I know right now all she is getting is my breast milk mixed with a little bit of powdered formula for extra calories. That reminds me they added 1cc per hour to her feeding tube today, making that a total of only 4ccs an hour, which is maybe half a teaspoon? And she's not getting bottle fed at all anymore . That breaks my heart. A baby should be able to breastfeed, naturally. But I thank God that she is able to get my breast milk and pray that I can find ways to treat my body as best I can because I know that will effect her for better or for worse. I've learned to not take anything for granted and not to complain. It is time consuming and inconvenient to have to pump every three hours, especially in the middle of the night, but then I realize that this is the healthiest thing going into her body right now. I feel like I get to actively participate in nourishing her.
The dr.'s want her to get the proper nutrition but don't want her body getting too many fluids or her stomach getting too full, which pushes up on her lungs and liver, making it hard to breathe and uncomfortable. She was still on .25 liters of oxygen today. They took more blood today for a blood culture. so far she hasn't tested positive for any infection. Her chest x-ray and ultrasound came back fine too.
The doctor said her abdomen felt really soft today and her liver and speen are still heading in the right direction, as is she in general, which is no small feat, at this point.
And I'll end with this: Today I was talking to my former "employer" for whom I cleaned house and taxi'd her kids. She works at the hospital where Bela is and said that Bela's "team" called a special meeting with all the staff of the entire hospital. She wasn't at the meeting but she overheard other doctors talking about it in the lunch room one day and put two and two together. She said Bela's case is just so "rare-rare-rare-rare-rare"...1 in a million." And we are the "lucky" family that it got to happen to. But later Beto and I were talking and we still believe that this didn't happen by chance. We still believe she will pull through all of this, be healed, and now I know that not only HER doctors but the entire staff of the entire hospital will know about how God made her into a miracle child.
Thanks for all your prayers! it is a relief to be able to share in this journey with so many of you.
Please pray specifically for...
1. Her blood pressure to return to normal and to go off the meds
2. No more fevers or oxygen tube or feeding tube
3. No more fluid retention or Lasix
4. Her liver and spleen to continue to get to normal size.
5. She's developed some mouth sores(expected from chemo). please pray those go away. they are very painful.
6. Our family and whatever else may be on your heart.
We would love to pray for you too! Let us know!
She was pretty tired this morning at 10:30 when I arrived. She slept until about 2:30 when Beto, Santi, and my sister Glenda showed up. Beto, Santi, and I had to get blood taken to see if we're matches to transplant bone marrow to Bela, IF she might need it in the future, which at this point they don't think she will. Poor santi just screamed and screamed and they had to restrain him, but then we told him that Bela gets poked like that many times a day and showed him some of her bruises and her central line, and he seemed very pensive. I hope that's ok and we didn't just scar the boy for life. It was amazing, though, when they walked in to Bela's room. She was really out of it but she sure perked up when she heard Santi! She followed him with her eyes and turning her head wherever he went and her eyes grew wide.
Her blood pressure is still way too high, so I met her "blood pressure/kidney doctor" today. In adults with high blood pressure the concern is usually the heart, but in kids Bela's size, the concern is with the kidneys. She is on blood pressure medicine but I'm not sure that's working well yet. It is not prescribed for a certain amount of time like antibiotics, only until she doesn't need it anymore.
She received another one time dose of Lasix today to rid her system of extra fluids. She is still on three antibiotics for a total of at least 10 days, which makes her have a stool in every diaper just about. That combined with the Lasix makes for a very messy situation. My sister had to change her shirt after her visit today. Sorry! She also received another dose of Albumin today. It's a protein that a lot of kids like her receive. She is getting Tylenol mostly for fever but I am glad she hasn't seemed to need anymore Morphine.
I'm sure there's some medicine I'm forgetting about. I really hate that she's on so much medicine. They say that the same chemo that kills the bad cells could be what causes cancer in her later in life. Of course we are praying against that! I have been thinking a lot about her diet and my diet, how that can affect her healing process and wondering if what I ate in pregnancy,or didn't eat, had anything to do with her Leukemia. I've been told I can't think like that, that it's not my fault, and I shouldn't feel guilty, but a mother still wonders.
I know right now all she is getting is my breast milk mixed with a little bit of powdered formula for extra calories. That reminds me they added 1cc per hour to her feeding tube today, making that a total of only 4ccs an hour, which is maybe half a teaspoon? And she's not getting bottle fed at all anymore . That breaks my heart. A baby should be able to breastfeed, naturally. But I thank God that she is able to get my breast milk and pray that I can find ways to treat my body as best I can because I know that will effect her for better or for worse. I've learned to not take anything for granted and not to complain. It is time consuming and inconvenient to have to pump every three hours, especially in the middle of the night, but then I realize that this is the healthiest thing going into her body right now. I feel like I get to actively participate in nourishing her.
The dr.'s want her to get the proper nutrition but don't want her body getting too many fluids or her stomach getting too full, which pushes up on her lungs and liver, making it hard to breathe and uncomfortable. She was still on .25 liters of oxygen today. They took more blood today for a blood culture. so far she hasn't tested positive for any infection. Her chest x-ray and ultrasound came back fine too.
The doctor said her abdomen felt really soft today and her liver and speen are still heading in the right direction, as is she in general, which is no small feat, at this point.
And I'll end with this: Today I was talking to my former "employer" for whom I cleaned house and taxi'd her kids. She works at the hospital where Bela is and said that Bela's "team" called a special meeting with all the staff of the entire hospital. She wasn't at the meeting but she overheard other doctors talking about it in the lunch room one day and put two and two together. She said Bela's case is just so "rare-rare-rare-rare-rare"...1 in a million." And we are the "lucky" family that it got to happen to. But later Beto and I were talking and we still believe that this didn't happen by chance. We still believe she will pull through all of this, be healed, and now I know that not only HER doctors but the entire staff of the entire hospital will know about how God made her into a miracle child.
Thanks for all your prayers! it is a relief to be able to share in this journey with so many of you.
Please pray specifically for...
1. Her blood pressure to return to normal and to go off the meds
2. No more fevers or oxygen tube or feeding tube
3. No more fluid retention or Lasix
4. Her liver and spleen to continue to get to normal size.
5. She's developed some mouth sores(expected from chemo). please pray those go away. they are very painful.
6. Our family and whatever else may be on your heart.
We would love to pray for you too! Let us know!
Sunday, August 19, 2012
Another waiting game
Beto was going to spend the night last night but decided not to go since he and I didn't feel well. We decided it must've been something we ate, but we can't take any chances. That's one of the hardest parts about all of this, not being able to see Bela when we just don't feel quite right, because we can't take any chances in passing something on to her since her defenses are so low right now.
Today we went back to church for the first time in almost two months, and that was very encouraging. After church Santi and I went to see her. My aunt Glenda had been there since the morning with her neighbor and lifelong friend, who is also a friend of the family. They came bearing gifts, and we are very thankful. We hung out for a couple of hours and she slept the whole time.
She didn't have a fever, although it had gone up last night again, so we're glad it went back to normal today. Her blood pressure has been high so they have her on medicine for that. They aren't sure why but probably any pain she is having will raise it. She went back on oxygen, just .25 liters, not because her oxygen was too low but because her heart rate was too high, which could also be caused by pain. She needs another transfusion of platelets which will probably happen tomorrow, and will receive Lasix, the diuretic, sometime tonight or tomorrow. They have put her back on milk through her feeding tube, just a very small amount, but it's something. We are very happy that the chemo hasn't "burned" her skin in her diaper area through all of the chemo. She has gone through about 100 diapers a day, however. She is still on 3 antibiotics although they are still not positive that she has an infection. (see previous post). Another blood culture was taken today so we shall see in a few days. I pray the fever won't come back and that it was just caused by the chemo. So now we just wait and see how she does these next few weeks.
When we were there today it took a little bit to calm her down after I changed her diaper since she'd been sleeping very soundly, so as I rocked her in the chair, Santi said, "I have an idea! Let's sing her Twinkle Twinkle Little Star!" and went and grabbed his Tia Glenda's hand and pulled her over next to the chair and led us in song. She still fussed right up till the last note when she calmed down, closed her eyes, put her head on my shoulder, and fell asleep peacefully, and was still like that about 20 minutes later when we left.
Tonight Beto's on duty at the hospital. He went more prepared this time with his laptop and movies.
Today we went back to church for the first time in almost two months, and that was very encouraging. After church Santi and I went to see her. My aunt Glenda had been there since the morning with her neighbor and lifelong friend, who is also a friend of the family. They came bearing gifts, and we are very thankful. We hung out for a couple of hours and she slept the whole time.
She didn't have a fever, although it had gone up last night again, so we're glad it went back to normal today. Her blood pressure has been high so they have her on medicine for that. They aren't sure why but probably any pain she is having will raise it. She went back on oxygen, just .25 liters, not because her oxygen was too low but because her heart rate was too high, which could also be caused by pain. She needs another transfusion of platelets which will probably happen tomorrow, and will receive Lasix, the diuretic, sometime tonight or tomorrow. They have put her back on milk through her feeding tube, just a very small amount, but it's something. We are very happy that the chemo hasn't "burned" her skin in her diaper area through all of the chemo. She has gone through about 100 diapers a day, however. She is still on 3 antibiotics although they are still not positive that she has an infection. (see previous post). Another blood culture was taken today so we shall see in a few days. I pray the fever won't come back and that it was just caused by the chemo. So now we just wait and see how she does these next few weeks.
When we were there today it took a little bit to calm her down after I changed her diaper since she'd been sleeping very soundly, so as I rocked her in the chair, Santi said, "I have an idea! Let's sing her Twinkle Twinkle Little Star!" and went and grabbed his Tia Glenda's hand and pulled her over next to the chair and led us in song. She still fussed right up till the last note when she calmed down, closed her eyes, put her head on my shoulder, and fell asleep peacefully, and was still like that about 20 minutes later when we left.
Tonight Beto's on duty at the hospital. He went more prepared this time with his laptop and movies.
Saturday, August 18, 2012
Prince of Peace
A few weeks ago when Bela was in NICU her cubicle was next door to a baby who had a lot of trouble breathing. I remember sitting in the rocking chair with Bela praying for that boy when I felt God asking me, "If you had to choose, would you pick for that boy to live, or Bela?" Wow.
I thought about it, and I had to say, "Sorry, but I would not give up my child for a boy that doesn't even know me. "
And He said, "I did." Wow.
That's true. God gave up His one and ONLY son for people that didn't even know Him, because He loves us. And it's His blood that gives us life and allows us to have joy in the midst of trials. And it's that blood that covers my daughter and gives us hope that She will be fully healed.
Yesterday I read that book that's apparently pretty well known now, "Heaven is For Real". It's amazing. I read it in about two hours yesterday and haven't been able to stop thinking about it. It's about a 4 year old boy who flatlined during surgery and went to heaven . He recounts his experience to his parents, telling them things about their lives that they'd never told him and that he couldn't have known any other way. But the most startling thing to me is the immense love he feels that Jesus has for His children. The way the boy describes what he saw gives such a visual image.
So yesterday in Bela's room I could picture what I had read and picture Jesus there with us, with a look of compassion and love, loving on us both, and I felt His peace. And I pray for all of you who've prayed for us, that you'll know and feel His peace too.
We thank you for the prayers, because most days we are exhausted and don't know how we're going to get through this. We feel tired, scared, alone, stressed, angry, and are "short" with each other sometimes, not having the energy to communicate. But we feel so encouraged through all of your prayers and we know that the burden is shared. We pray a lot too, but when we are tired and we need others to lift us up, we feel relieved because we know so many people are "standing in the gap" for us.
I thought about it, and I had to say, "Sorry, but I would not give up my child for a boy that doesn't even know me. "
And He said, "I did." Wow.
That's true. God gave up His one and ONLY son for people that didn't even know Him, because He loves us. And it's His blood that gives us life and allows us to have joy in the midst of trials. And it's that blood that covers my daughter and gives us hope that She will be fully healed.
Yesterday I read that book that's apparently pretty well known now, "Heaven is For Real". It's amazing. I read it in about two hours yesterday and haven't been able to stop thinking about it. It's about a 4 year old boy who flatlined during surgery and went to heaven . He recounts his experience to his parents, telling them things about their lives that they'd never told him and that he couldn't have known any other way. But the most startling thing to me is the immense love he feels that Jesus has for His children. The way the boy describes what he saw gives such a visual image.
So yesterday in Bela's room I could picture what I had read and picture Jesus there with us, with a look of compassion and love, loving on us both, and I felt His peace. And I pray for all of you who've prayed for us, that you'll know and feel His peace too.
We thank you for the prayers, because most days we are exhausted and don't know how we're going to get through this. We feel tired, scared, alone, stressed, angry, and are "short" with each other sometimes, not having the energy to communicate. But we feel so encouraged through all of your prayers and we know that the burden is shared. We pray a lot too, but when we are tired and we need others to lift us up, we feel relieved because we know so many people are "standing in the gap" for us.
Slumber Party!
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| My best attempt at capturing her smile. |
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| I got to meet the world's largest dog, Bentley. They visit about 200 hospitals a year and raise money for kids and canine cancers. His first dog died of cancer. I am 5feet 4 in. Bentley's 7 feet tall standing on his hind legs. |
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| She adores her big brother |
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| "What What?!" |
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| Boxing Champions |
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| Daddy's Girl |
Today, well, right now actually she's receiving her final dose of chemo. These next three weeks she'll be in "recovery" from it. Her platelet and white blood cell numbers should go to zero and then begin to grow to a healthy level on their own if she responds well to treatment. After a few weeks when she is "healthy" again she'll begin her second round of 10 days of chemo.
She is doing very well say the doctors. Her spleen is exceptionally better. Her liver is slowly but surely recovering. Her abdomen is a little less swollen and her hernia's seem to be causing less damage "down there".
THEY TOOK HER OFF OXYGEN YESTERDAY!!! That is a very good thing. She still has the tube in her nose in case they need to turn it on suddenly, but she's gone for almost 24 hours now without it and has kept her oxygen in the 90-100 range, so praise God for that!
She has been vomiting so they took her off feeds early this morning and will see how she does today and may start her again little by little this afternoon. They still have her on fluids to keep her nutritionally balanced and hydrated.
Yesterday "Dr. Z", (our favorite hemotologist/oncologist...sshh...) showed me a diagram of Bela's chromosones and explained it to me. Everyone has 22 chromosones plus either the x or y. For each number there is a pair, one from the mom (that's me!) and one from the dad (that's Beto). They aren't sure if the first in the pair is from the mom or dad and same for the second. Is this too much biology? Anyways, The 1 and 21 are abnormal in that instead of being the same size like all the others, one is shorter than the other, as if part of one from #1 broke off and attached itself to the smallest one in #21. Google "diagram of 23 pairs of chromosomes" and you'll see a good picture of it. So her condition is obvisously not genetic, but the doctors aren't sure when during the growth process of the baby this chromosome abnormality manifests itself. I was wondering why they can't detect this during pregnancy as they can Downs, which is also a chromosome abnormality. But I forgot to ask Dr. Z.
Today they are transferring more platelets to her as her count was at only 11,000.
Today please pray for...
1. Her fever to break
2. There be NO infections
3. Her to continue to breathe without the oxygen tube, and to continue to move in the right direction, that her spleen and liver will continue to go back to their intended size and place, and her abdomen will also.
4. that these next three weeks of recovery will be healthy for her and 100% positive in terms of how she responds to treatment.
Thank you for all your prayers. These past 10 days with her in chemo have been a little more relaxing since she has been getting better and hasn't had any dangerous symptoms, but I feel like I'm holding my breath all the time. I pray she will continue to "sail through" all of this. Thanks for your prayers!
Thursday, August 16, 2012
Little by little
Not too much new stuff to report today about Bela. My wonderful aunt Glenda was with her all day yesterday, spent the night, and waited till I got there around 11 this morning. I was with Bela until about 9pm tonight. I got there in the morning just in time for the doctors and head nurse to come in. She said her spleen is still getting better. Her liver is still too big and low and hasn't changed much, but it should get better with more chemo. Today she is on day 8 of 10 and has just two more meds to go. She slept in my arms for about an hour and then in her bed for a couple more hours, but then she had a few hours of seeming to be very uncomfortable. She would "sorta kinda" sleep but wake up crying hard every 10 minutes or so. The nurse was giving her more milk in her feeding tube and tylenol when I left so hopefully she'll have a good night with Beto. She likes to be bundled up with lots of blankets and left alone in her bed to sleep.
Her eyes were swollen today when I arrived too, but by the time I left they looked normal. The dr. says it is because of all of the fluids in her system. So for now we are just waiting for her chemo to finish and to see how she does during her recovery period when they'll take more tests to check all of her levels and wait until she's "healthy enough" to start her second round of chemo. And sorry I keep forgetting the camara and she was smiling SO MUCH today!!! She's hilarious already.
Please pray today for...
1. Bela to stay comfortable and sleep well at night
2. To continue to progress well with treatment
Thanks again for all your prayers!
Her eyes were swollen today when I arrived too, but by the time I left they looked normal. The dr. says it is because of all of the fluids in her system. So for now we are just waiting for her chemo to finish and to see how she does during her recovery period when they'll take more tests to check all of her levels and wait until she's "healthy enough" to start her second round of chemo. And sorry I keep forgetting the camara and she was smiling SO MUCH today!!! She's hilarious already.
Please pray today for...
1. Bela to stay comfortable and sleep well at night
2. To continue to progress well with treatment
Thanks again for all your prayers!
Monday, August 13, 2012
Progress
Last night I spent the night with Bela and she did really really well. She still woke up a few times for diaper changes or because the nurse needed to give her meds, but otherwise she slept well.
Today I was there all day and now I'm exhausted.
The "head honcho" hemotologist/oncologist came by today and I met her for the first time. She's very nice and said it looks like Bela's liver and spleen are smaller and her belly is softer. She is also breathing better and she is only on .25 liters of oxygen and the tube can't ever seem to stay in her nose. She is almost always in the 90 percentages and her heart rate is always normal. The doctor says she's very happy with her progress and can see that Bela is responding very well to treatment.
They did have to give her more Lasix yesterday which is normal for a baby in the NICU. They are giving her a lot of fluids on purpose so her kidneys aren't negatively effected by the chemo. I think I must've changed a diaper at least every 30 minutes today. She is definately flushing out her system. The area where her hernia's are also looks a little bit better.
She only has five more days of one medicine and that's given only every 12 hours. She is still getting her breastmilk through the feeding tube since it seems to be helping her breathe better, and today she had to receive another transfusion of platelets because they were at only 14,000. Her levels are expected to be very low, however, with the treatment. That lets them know the chemo is working.
She was pretty good until this afternoon when she just couldn't seem to get comfortable, but the nurse finally gave her some tylenol around 6pm so hopefully she'll sleep well tonight since Beto is sleeping there tonight. She is on anti-nausea medicine but she seemed exhausted but unable to sleep.
Today a volunteer came in and gave the girls and moms free manicures. She works at a salon where one of the hospital's social workers goes. She volunteers one day a month on her day off. She had breast cancer at age 25 so she wanted to give back since she is so grateful to be alive.
Also we recieved another visit from a volunteer whom we met last week and brought a hat for Bela. She stayed for about half an hour and comforted Bela while I went out for a walk. She's a Christian and so she sang some hymns over Bela. It was really sweet. And earlier in the day another nurse offered to sit with her and rock her while I got out for a few minutes.
Some prayer requests for today...
1. For Beto and Bela to sleep well tonight
2. For us to make some kind of good schedule to give us all some structure
3. For Santi. He is doing well but I know it's hard to have only one parent at a time with him right now.
4. For us all to stay well so we can all be able to visit Bela
5. Continued healing and rest for Bela, for her to be able to get off of oxygen and the feeding tube soon.
We feel so grateful for all of the love, prayers, support, texts, calls, cards, etc. from so many loved ones. Thank you and to God be all the glory.
Today I was there all day and now I'm exhausted.
The "head honcho" hemotologist/oncologist came by today and I met her for the first time. She's very nice and said it looks like Bela's liver and spleen are smaller and her belly is softer. She is also breathing better and she is only on .25 liters of oxygen and the tube can't ever seem to stay in her nose. She is almost always in the 90 percentages and her heart rate is always normal. The doctor says she's very happy with her progress and can see that Bela is responding very well to treatment.
They did have to give her more Lasix yesterday which is normal for a baby in the NICU. They are giving her a lot of fluids on purpose so her kidneys aren't negatively effected by the chemo. I think I must've changed a diaper at least every 30 minutes today. She is definately flushing out her system. The area where her hernia's are also looks a little bit better.
She only has five more days of one medicine and that's given only every 12 hours. She is still getting her breastmilk through the feeding tube since it seems to be helping her breathe better, and today she had to receive another transfusion of platelets because they were at only 14,000. Her levels are expected to be very low, however, with the treatment. That lets them know the chemo is working.
She was pretty good until this afternoon when she just couldn't seem to get comfortable, but the nurse finally gave her some tylenol around 6pm so hopefully she'll sleep well tonight since Beto is sleeping there tonight. She is on anti-nausea medicine but she seemed exhausted but unable to sleep.
Today a volunteer came in and gave the girls and moms free manicures. She works at a salon where one of the hospital's social workers goes. She volunteers one day a month on her day off. She had breast cancer at age 25 so she wanted to give back since she is so grateful to be alive.
Also we recieved another visit from a volunteer whom we met last week and brought a hat for Bela. She stayed for about half an hour and comforted Bela while I went out for a walk. She's a Christian and so she sang some hymns over Bela. It was really sweet. And earlier in the day another nurse offered to sit with her and rock her while I got out for a few minutes.
Some prayer requests for today...
1. For Beto and Bela to sleep well tonight
2. For us to make some kind of good schedule to give us all some structure
3. For Santi. He is doing well but I know it's hard to have only one parent at a time with him right now.
4. For us all to stay well so we can all be able to visit Bela
5. Continued healing and rest for Bela, for her to be able to get off of oxygen and the feeding tube soon.
We feel so grateful for all of the love, prayers, support, texts, calls, cards, etc. from so many loved ones. Thank you and to God be all the glory.
Sunday, August 12, 2012
Aunt Glenda
My Aunt has been at the hospital all day mostly alone with Bela (and the nurses). I was going to spend the night tonight but the doctor has strict orders that anyone who is even living with sick people cannot go to visit Bela because her immune system is so compromised right now. So my aunt Glenda is spending the night as well with her. Santiago and my niece came home sick from church camp and my mom was around sick people all week so I'm not sure when Beto and I will be able to go see her again. It is really hard but I'd rather Bela not get very sick than for her to get really sick and then me feel guilty about it.
My aunt shared with me that they put Bela back on the feeding tube today for a simple reason. They realized that her breathing was more labored after she ate and then they realized that she was taking about 3 ounces in just 30 minutes. This was putting a lot of pressure in her abdomen area, so now they are giving her an ounce an hour through her tube to see if that helps.
They are also giving her more platelets tonight.
I'm so grateful to my aunt Glenda and also to my aunt Romaine and sister Glenda who have helped a lot lately. Thanks for your prayers and please pray for my aunt Glenda as she stays the night, that she can actually get some sleep, and Bela too!
My aunt shared with me that they put Bela back on the feeding tube today for a simple reason. They realized that her breathing was more labored after she ate and then they realized that she was taking about 3 ounces in just 30 minutes. This was putting a lot of pressure in her abdomen area, so now they are giving her an ounce an hour through her tube to see if that helps.
They are also giving her more platelets tonight.
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| An older picture that never made it to the blog. Bela and her grandma. |
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| Our son came home from camp!!! we missed him so much! |
Saturday, August 11, 2012
Brief update
Beto spent the night at the hospital last night and said she was still very "anxious" until about 2am. The nurse gave her some morphine and later some tylenol. She calmed down and slept very peacefully after that. This morning my aunts arrived and my aunt Glenda is still there. She spoke to the doctor who said her most recent blood test still shows NO leukemia! He is thinking that perhaps it confined to her liver and spleen. She will be getting another chest x-ray today to check her lungs again. She's been more relaxed and sleeping more peacefully today, so thank you for all your prayers and thanks to God for listening! We are dumbfounded, just as we hoped for. We are still not out of the woods yet and have a long way to go but are rejoicing in this good news.
Friday, August 10, 2012
Mountains and Valleys
the VALLEY
I spent the night with Bela last night. It was a very rough night for both of us. I am tired and will make a long story short. She was having a very hard time breathing so the nurse put her on oxygen and called the doctor who ordered a chest x-ray. Her x-ray showed some fluid in her lungs so they gave her two doses of a medicine called Lasix which helped to flush out her insides of all the extra fluid. She peed a lot so we had to stay up and make sure we changed her right away. She was very uncomfortable and HATES the oxygen tube. She keeps pulling on it, so she is having a lot of trouble resting. It's like she drank a cup of coffee but the effect of the caffeine never wears off. She's very restless.
Early this morning, around 3, she had another platelet transfusion but I didn't find out yet what her levels were today. She had a better day with my aunt Glenda, aunt Romy, and sister Glenda. They took turns all day while I came home to rest and take care of some bills,etc.
the MOUNTAIN
The doctor and my aunt Romy both said they think her abdomen feels a little bit softer. I've learned that the hemotologist is very careful not to show much emotion either way, he's just very matter of fact. We really like him and he does know how to joke around, but as far as giving information, he has the same facial expression whether he's telling us she has cancer or telling us that the latest test results show no cancer cells. He could be saying "This is bad news" or "this is good news": same tone of voice and body language.
But today I could tell that he was very happy with some good news: The results from her bone marrow biopsy on Tuesday show no leukemia cells. This is great but it doens't mean she's cancer free nor does it mean they will stop treatment. It basically means they couldn't see any on the particular slide they looked at. I am not minimizing this amazing news at all. We are very excited. but the doctors want to continue with the full course of treatment. Sometimes there may be one lone cancer cell left that will multiply if not taken care of, so they want to be sure they take all the necessary steps to eradicate every last cell. Thanks for you prayers!
The other piece of very good news is that from the bone marrow they were also testing for a certain factor which as of now I can't remember the name of nor know how to explain it, but basically she does not have this certain factor in her blood which puts her in the "LOW RISK" category, which means she most likely won't have to have a bone marrow transplant in the future.
So today as every day we praise God! and please keep praying!!! Thank you!!!
I spent the night with Bela last night. It was a very rough night for both of us. I am tired and will make a long story short. She was having a very hard time breathing so the nurse put her on oxygen and called the doctor who ordered a chest x-ray. Her x-ray showed some fluid in her lungs so they gave her two doses of a medicine called Lasix which helped to flush out her insides of all the extra fluid. She peed a lot so we had to stay up and make sure we changed her right away. She was very uncomfortable and HATES the oxygen tube. She keeps pulling on it, so she is having a lot of trouble resting. It's like she drank a cup of coffee but the effect of the caffeine never wears off. She's very restless.
Early this morning, around 3, she had another platelet transfusion but I didn't find out yet what her levels were today. She had a better day with my aunt Glenda, aunt Romy, and sister Glenda. They took turns all day while I came home to rest and take care of some bills,etc.
the MOUNTAIN
The doctor and my aunt Romy both said they think her abdomen feels a little bit softer. I've learned that the hemotologist is very careful not to show much emotion either way, he's just very matter of fact. We really like him and he does know how to joke around, but as far as giving information, he has the same facial expression whether he's telling us she has cancer or telling us that the latest test results show no cancer cells. He could be saying "This is bad news" or "this is good news": same tone of voice and body language.
But today I could tell that he was very happy with some good news: The results from her bone marrow biopsy on Tuesday show no leukemia cells. This is great but it doens't mean she's cancer free nor does it mean they will stop treatment. It basically means they couldn't see any on the particular slide they looked at. I am not minimizing this amazing news at all. We are very excited. but the doctors want to continue with the full course of treatment. Sometimes there may be one lone cancer cell left that will multiply if not taken care of, so they want to be sure they take all the necessary steps to eradicate every last cell. Thanks for you prayers!
The other piece of very good news is that from the bone marrow they were also testing for a certain factor which as of now I can't remember the name of nor know how to explain it, but basically she does not have this certain factor in her blood which puts her in the "LOW RISK" category, which means she most likely won't have to have a bone marrow transplant in the future.
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| Cant' wait for the day when she's not hooked to anything! |
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| Wondering what she'll order for lunch |
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| With her great Aunt Romaine |
Thursday, August 09, 2012
A Very Blessed Day
Beto spent the night at the hospital last night. He and Bela didn't get much sleep because she was very uncomfortable from her surgery and the start of chemo. My aunt came again at about 8am and got Beto breakfast. I arrived later and stayed all day with my sister Glenda. She seemed to be a little more comfortable and slept well today, especially after we turned on the ipod with Rita Springer.
When my aunt and Glenda went down to get me some food they ran into our friends Gene and Sheila Spivey who were there to donate blood for Bela. They came up for awhile and visited which was a real blessing.
Her breathing is not good because her spleen is so big it is pushing up on her lungs. Her belly is very swollen and hard. The doctor said her spleen should shrink by this weekend because of the chemo so that's what we're praying for. Her breaths are very short and she whimpers constantly so we are praying that she can breathe normally and comfortably.
Today we were given a large gift from the Evelyn Grace Foundation. Evelyn Grace was a baby born with a different type of leukemia who died when she was five months old. Her parents set up the foundation. We received a $50 gas card and some really nice items like a super soft throw blanket, a robe for Bela, a handmade card with embedded seeds that when planted will produce flowers, and some hats for Bela. These are given to all new patients. So many of you have asked how you can help. If you'd like to check out this foundation and possibly make a donation, that would be great. Here is the info:
Evenly Grace Foundation
P.O Box 463
Seal Beach,CA 90740
Phone: 562.296.5347
Email: contact@evelyngracefoundation.org
Website: www.evelyngracefoundation.org
We also got a visit from a dietician, the hemotologist, a volunteer grandma who gave Bela a knitted cap, and the hospital chaplain who prayed with Glenda and I. The volunteer grandma was very encouraging. She started making hats when a boy at her church got cancer at age 5. He's now a teen. She said about 98% of the children she's seen with cancer at Miller's go into remission and that we are at the best place.
My aunt Glenda came this afternoon and is still there with Bela until I return to spend the night tonight. We also got to put her first real outfit on her today!! She looked like a real girl! yea!
Besides her breathing, please pray that...
1. the doctors decide to put in a PICC line, another permanent IV. They think she may be too small but it would really help her and the nurses if they could place one on her.
2. That she responds well to treatment so that her spleen will go down.
3. Continued protection for her heart and brain
4. That she'll gain real weight and not just water weight. They are going to change her eating schedule so she's getting more milk and nutrition and less IV fluids.
Thanks so so very much for all of your prayers, encouragement and support! It is so touching and I wish we could visit with each of you face to face to thank you. We are so grateful.
When my aunt and Glenda went down to get me some food they ran into our friends Gene and Sheila Spivey who were there to donate blood for Bela. They came up for awhile and visited which was a real blessing.
Her breathing is not good because her spleen is so big it is pushing up on her lungs. Her belly is very swollen and hard. The doctor said her spleen should shrink by this weekend because of the chemo so that's what we're praying for. Her breaths are very short and she whimpers constantly so we are praying that she can breathe normally and comfortably.
Today we were given a large gift from the Evelyn Grace Foundation. Evelyn Grace was a baby born with a different type of leukemia who died when she was five months old. Her parents set up the foundation. We received a $50 gas card and some really nice items like a super soft throw blanket, a robe for Bela, a handmade card with embedded seeds that when planted will produce flowers, and some hats for Bela. These are given to all new patients. So many of you have asked how you can help. If you'd like to check out this foundation and possibly make a donation, that would be great. Here is the info:
Evenly Grace Foundation
P.O Box 463
Seal Beach,CA 90740
Phone: 562.296.5347
Email: contact@evelyngracefoundation.org
Website: www.evelyngracefoundation.org
We also got a visit from a dietician, the hemotologist, a volunteer grandma who gave Bela a knitted cap, and the hospital chaplain who prayed with Glenda and I. The volunteer grandma was very encouraging. She started making hats when a boy at her church got cancer at age 5. He's now a teen. She said about 98% of the children she's seen with cancer at Miller's go into remission and that we are at the best place.
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| The tote from Evelyn Grace Foundation |
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| Bela loves looking up all the time. |
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| The volunteer Grandma, Denise, sang "Jesus Loves Me" to Bela. |
Besides her breathing, please pray that...
1. the doctors decide to put in a PICC line, another permanent IV. They think she may be too small but it would really help her and the nurses if they could place one on her.
2. That she responds well to treatment so that her spleen will go down.
3. Continued protection for her heart and brain
4. That she'll gain real weight and not just water weight. They are going to change her eating schedule so she's getting more milk and nutrition and less IV fluids.
Thanks so so very much for all of your prayers, encouragement and support! It is so touching and I wish we could visit with each of you face to face to thank you. We are so grateful.
Day One of Chemo
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.
Tuesday, August 07, 2012
Pictures
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| On her way to surgery |
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| Holding Aunt Romaine's hand |
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| Getting fed after surgery. She made that milk disappear so fast! |
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| This is how they transported her to her room from recovery. |
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| Waiting to go to surgery |
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| Her private beach cottage |
This morning we arrived at 9am and Bela was asleep. She had to stop eating at 2am so we let her be. She had to receive more plasma this morning before surgery but she was good otherwise. She went into surgery right at 11. We met the surgeon who placed her central line, the nurse practioner who performed the biopsy and spinal tap, the anesthesiologist, and nurse. We checked twice the paperwork and had to repeat verbally twice what procedures she would be having. While she was in surgery we went to eat in the cafeteria. All together she was only in the operating room about an hour and a half and in recovery for about the same amount of time. I am planning to spend the night at the hospital tonight for the first time and I am nervous...nervous about being alone (except for the nurses) and about how I'll sleep, but at least I took about a 2 hour nap today.
We are so thankful to God for answering prayers and being with her and the doctors during her surgery, and so grateful that she came through so well. She was pretty fussy once she woke up because she was hungry and in a lot of pain. The nurse could tell by her blood pressure and other vitals, but after she ate and got a bit more morphine, she calmed down and fell asleep. She also received meds for nausea and is getting hydrating fluids.
The hemotologist came to see her and said he'd asked for two tubes to be placed coming out of her central line but perhaps the surgeon only put one because she is so small. He was happy with the outcome of the surgery and said she may be able to start her round of chemo tomorrow but that she has to have a lot of fluids tonight and pee a lot, so please pray for that and that things keep progressing smoothly and for no setbacks.
What it means to only have one tube coming out of her central line is that they can't administer more than one med at a time so she will have to keep an IV more often, which is more complicated. Please pray that she won't have much pain with the IV's because they tend to fall out a lot and I know it's painful for her when they put a new one in, and after all the IV's she's had her body is running out of places to insert them.
Thanks to all of you readers who we don't even know who have poured out your support in so many ways such as wanting to walk in her name in Relay for Life, wanting to donate blood and bone marrow, and who have brought meals and offered to help in any way. We feel so humbled and are just praising God for how He is being glorified in all of this.
Surgery went well
Surgery went very well. She is recovering fine. They did see some leukemia cells in the spinal fluid but already put chemo there during the procedures and will check it periodically in the coming months. She had a wonderful Christian nurse today who was very encouraging and said we got the best surgeon. Her son has to have a central line as well and she only lets the surgeon who Bela had do surgery on her son, so we were happy about that. Thanks for all your prayers. Pictures to come later.
Surgery Postponed
Today my sister and I (Beto had a previously scheduled appointment) were at the hospital at 6:30am and met with Bela's night nurse who was just finishing her shift. She said the surgery was scheduled still for 9am and Bela had already been moved to a "holding" room because another baby needed her previous room. Even though they stopped her feeds at midnight she slept well and did really well. We were led to a private family waiting room, after much confusion even though it was supposed to be reserved already. We were told that a nurse would come in to have me sign the final paperwork and let us know if she would have three procedures at once or just one. So we waited until a little after 8 and I though I better find the nurse. The nurse said that Bela's platelets and all her other blood levels were way too low to go in for a surgery and would have to be giving her blood products all day and that also there was no order anyways for her to have more than one procedure, but maybe she would have surgery tonight.
I wasn't happy and let the nurse know, although I know it wasn't her fault. So we went home since she was sleeping and we didn't want to wake her up since she'd be starving.
Some very good friends from church were "in the area" and called the house from the hospital where they were hoping to visit with us, but instead they came over and took us out to a wonderful lunch! During that time the nurse called and said she was scheduled for surgery tomorrow at 11am and would have the three procedures in one. She said the problem in the morning was that yesterday the order was not given to draw and check her blood. When they waited until this morning it was too late since her levels were low.
After lunch Beto and I went to the hospital where they'd already moved her up to the hemotology/oncology pediatric floor, or "Hemonc", as they call it there. We saw Bela's Hemotologist and he told us he was very unhappy about her surgery being postponed. I could tell he was really frustrated with those who were supposed to draw her blood yesterday and didn't.
But we know God's in control. Tonight we had another wonderful visit with some other lifelong friends who brought dinner and prayed with us. We really can feel all of your prayers. Thank you so much. If we can ask you again to pray for her again tomorrow that the surgery go very well and she recovers perfectly, that the Lord guides the surgeon's hands and that the results of her biopsy and spinal tap are positive. Well, I mean, negative in the medical sense, positive in the emotional sense. Does that make sense?
We are so encouraged by all of your prayers and positive comments, here and in person.
The JOY of the LORD is our STRENGTH!!!
I wasn't happy and let the nurse know, although I know it wasn't her fault. So we went home since she was sleeping and we didn't want to wake her up since she'd be starving.
Some very good friends from church were "in the area" and called the house from the hospital where they were hoping to visit with us, but instead they came over and took us out to a wonderful lunch! During that time the nurse called and said she was scheduled for surgery tomorrow at 11am and would have the three procedures in one. She said the problem in the morning was that yesterday the order was not given to draw and check her blood. When they waited until this morning it was too late since her levels were low.
After lunch Beto and I went to the hospital where they'd already moved her up to the hemotology/oncology pediatric floor, or "Hemonc", as they call it there. We saw Bela's Hemotologist and he told us he was very unhappy about her surgery being postponed. I could tell he was really frustrated with those who were supposed to draw her blood yesterday and didn't.
But we know God's in control. Tonight we had another wonderful visit with some other lifelong friends who brought dinner and prayed with us. We really can feel all of your prayers. Thank you so much. If we can ask you again to pray for her again tomorrow that the surgery go very well and she recovers perfectly, that the Lord guides the surgeon's hands and that the results of her biopsy and spinal tap are positive. Well, I mean, negative in the medical sense, positive in the emotional sense. Does that make sense?
We are so encouraged by all of your prayers and positive comments, here and in person.
The JOY of the LORD is our STRENGTH!!!
Sunday, August 05, 2012
Bela's One Month Today!
Beto and I spent the afternoon with Bela today. We sang Happy Birthday to her because she turned one month today. One month already!
Her nurse said she was really happy and fun in the morning. She is very alert and loves to look around a lot.
One of the cancer research doctors came in for awhile and explained all the ins and outs of the research and our participation in it and then I had to sign a whole bunch of papers.
Beto had a wonderful time holding her for about 4 hours and they took a nap together. When she woke up they enjoyed listening to praise music together on dada's ipod.
Later after I changed her diaper and went to pick her up her feeding tube came out before I knew it. The tube was caught in her crib door and I didn't notice and it just ripped the tape right off her face. She didn't really cry but I felt so bad and thought the tube broke off in her stomach, but the nurse assured me "no big deal" and would put it back in at her next feeding time.
At 5pm I got to bottle feed her and at 6:30 the nurse came to give her more antibiotics in her IV. That's when she noticed that her IV was not good. This was at the same time as shift change and I had to leave. Bela was crying one of those really hard cries where she opens her mouth but no sound comes out for a few seconds, her face turns bright red, and then she lets out a loud scream. And I couldn't stay to comfort her. It's horrible having to leave her there although I know she's in great hands. The nurses had to put in a new IV. I am glad that she'll be getting the central line tomorrow.
Please remember to pray for Bela's "3-in-1" procedure tomorrow morning. They have moved it to 9am. We are praying for only good news and that Bela will recover extremely well and with minimal pain. Thank you so much for all of your prayers so far! We have been standing on God's Word and surrounding ourselves with praise music. I am reminded that Jesus' blood forgives and covers and protects us from the enemy. God is always with us and He is such a comfort.
Her nurse said she was really happy and fun in the morning. She is very alert and loves to look around a lot.
One of the cancer research doctors came in for awhile and explained all the ins and outs of the research and our participation in it and then I had to sign a whole bunch of papers.
Beto had a wonderful time holding her for about 4 hours and they took a nap together. When she woke up they enjoyed listening to praise music together on dada's ipod.
Later after I changed her diaper and went to pick her up her feeding tube came out before I knew it. The tube was caught in her crib door and I didn't notice and it just ripped the tape right off her face. She didn't really cry but I felt so bad and thought the tube broke off in her stomach, but the nurse assured me "no big deal" and would put it back in at her next feeding time.
At 5pm I got to bottle feed her and at 6:30 the nurse came to give her more antibiotics in her IV. That's when she noticed that her IV was not good. This was at the same time as shift change and I had to leave. Bela was crying one of those really hard cries where she opens her mouth but no sound comes out for a few seconds, her face turns bright red, and then she lets out a loud scream. And I couldn't stay to comfort her. It's horrible having to leave her there although I know she's in great hands. The nurses had to put in a new IV. I am glad that she'll be getting the central line tomorrow.
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| Nap time |
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| Thanks to my "sister-in-law"Lisa and her daughters for this beautiful and yummy Edible Fruit boquete! |
Please remember to pray for Bela's "3-in-1" procedure tomorrow morning. They have moved it to 9am. We are praying for only good news and that Bela will recover extremely well and with minimal pain. Thank you so much for all of your prayers so far! We have been standing on God's Word and surrounding ourselves with praise music. I am reminded that Jesus' blood forgives and covers and protects us from the enemy. God is always with us and He is such a comfort.
A Better Day
THANKS FOR YOUR PRAYERS!!! Bela is set for her surgery on Monday morning at 7:30am and will have three procedures at once so she'll only "go under" once, exactly what we were praying for! We are very encouraged!
My mom and I went to see Bela this morning. She looks really good. Mom got to hold her for a little bit but she didn't wake up. I got to hold her a lot for a couple of hours. She still has one IV placed in her foot and has the feeding tube, but her schedule does include a few feedings each day by bottle. We really like the nurse she had today, she's had her twice before. She calls her "Bela Bear" and only one of two nurses that actually give me hugs and treat us like family, although I have no complaints about any of the staff.
In the first few hours I was there five doctors came in to check in on Bela and answer any questions. The infectious disease Dr. is really nice and gentle with Bela and said we'll probably be seeing her again in a few months. No offense, but I hope we don't!
The neonatologist came to answer a few questions. The GI Dr. said her liver and spleen actually look good considering the circumstances. The leukemia has enlarged them and are crowding the stomach but he said the stomach is like a purse, it is just to hold her milk, not to aide in digestion at this point. Because of the crowding however she was vomiting a lot which is why she has the feeding tube. He explained that the liver is a very resilient organ and is very good at rebuilding itself. I am hopeful then that she will recover well from the chemotherapy. She has already proved to do well with antibiotics.
Later I met the surgeon who will insert the central line on Monday. He, as well, explained things well and was very patient with all my questions and was very personable. The central line is a permanent IV that is inserted into her chest and looped up into a vein in her neck and then hangs down inside her close to her heart. There is minimal risk of infection since it stays in for a long period of time. During the time she is "asleep" other doctors will do another bone marrow biopsy and still different doctors will insert her first round of chemo into her spinal column.
Finally I met one of the cancer Dr.'s who's part of the research team. The nurse has worked with his team before and had only very high remarks about them. He has a great bedside manner and I am very grateful to God for providing such great doctors, to say the least.
Another piece of good news is that I don't have to stay away from soy, dairy, nuts, eggs, or wheat anymore! I can have "whatever I want, whenever I want", and I quote the doctor! But I think I got a little too excited in the last 24 hours. Ugh, I need to detox again!
Santi is up at King's Kamp, our church's kids camp, this week with my mom as a junior camper. I know he's not even going to remember he has a mom or a dad this week he will have so much fun, and this will allow Beto and I a chance to adjust a bit to her being in the new oncology section.
Today's prayer requests are...
1. That Bela responds 100% positively to surgery on Monday and won't ever have any infection in the central line.
2. That her current IV stays in her foot until surgery Monday so they don't have to insert another one tomorrow.
3. That God will do a miracle and the bone marrow biopsy on Monday will show NO leukemia cells!
4. That she won't have any pain or side effects from the chemo.
I know these seem like such lofty prayer requests, but since God created the world and our bodies in less than week just by speaking, I am sure He can complete these requests.
Praise Him for His faithfulness.
My mom and I went to see Bela this morning. She looks really good. Mom got to hold her for a little bit but she didn't wake up. I got to hold her a lot for a couple of hours. She still has one IV placed in her foot and has the feeding tube, but her schedule does include a few feedings each day by bottle. We really like the nurse she had today, she's had her twice before. She calls her "Bela Bear" and only one of two nurses that actually give me hugs and treat us like family, although I have no complaints about any of the staff.
In the first few hours I was there five doctors came in to check in on Bela and answer any questions. The infectious disease Dr. is really nice and gentle with Bela and said we'll probably be seeing her again in a few months. No offense, but I hope we don't!
The neonatologist came to answer a few questions. The GI Dr. said her liver and spleen actually look good considering the circumstances. The leukemia has enlarged them and are crowding the stomach but he said the stomach is like a purse, it is just to hold her milk, not to aide in digestion at this point. Because of the crowding however she was vomiting a lot which is why she has the feeding tube. He explained that the liver is a very resilient organ and is very good at rebuilding itself. I am hopeful then that she will recover well from the chemotherapy. She has already proved to do well with antibiotics.
Later I met the surgeon who will insert the central line on Monday. He, as well, explained things well and was very patient with all my questions and was very personable. The central line is a permanent IV that is inserted into her chest and looped up into a vein in her neck and then hangs down inside her close to her heart. There is minimal risk of infection since it stays in for a long period of time. During the time she is "asleep" other doctors will do another bone marrow biopsy and still different doctors will insert her first round of chemo into her spinal column.
Finally I met one of the cancer Dr.'s who's part of the research team. The nurse has worked with his team before and had only very high remarks about them. He has a great bedside manner and I am very grateful to God for providing such great doctors, to say the least.
Another piece of good news is that I don't have to stay away from soy, dairy, nuts, eggs, or wheat anymore! I can have "whatever I want, whenever I want", and I quote the doctor! But I think I got a little too excited in the last 24 hours. Ugh, I need to detox again!
Santi is up at King's Kamp, our church's kids camp, this week with my mom as a junior camper. I know he's not even going to remember he has a mom or a dad this week he will have so much fun, and this will allow Beto and I a chance to adjust a bit to her being in the new oncology section.
Today's prayer requests are...
1. That Bela responds 100% positively to surgery on Monday and won't ever have any infection in the central line.
2. That her current IV stays in her foot until surgery Monday so they don't have to insert another one tomorrow.
3. That God will do a miracle and the bone marrow biopsy on Monday will show NO leukemia cells!
4. That she won't have any pain or side effects from the chemo.
I know these seem like such lofty prayer requests, but since God created the world and our bodies in less than week just by speaking, I am sure He can complete these requests.
Praise Him for His faithfulness.
Saturday, August 04, 2012
Eye of the Tiger
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! |
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