Today we had a meeting with the hemotologist again, whom we really like. He explains things very simply and calmly and is really patient with all of our questions and is even comfortable with long pauses.
He did tell us that Bela's been diagnosed with Acute Myeloid Leukemia. It's commonly seen in kids under 6 months but isn't a common form of leukemia. This explains why her liver and spleen are enlarged. She may have leukemia cells in the stomach or brain but aren't going to test those areas. They know it's in the blood.
She was moved to an isolation room today for her benefit, since her immune system is compromised. We have to now wear gloves and gowns when we go in. She had a feeding tube which she didn't have when I left the hospital yesterday afternoon. She's still recieving breast milk but her stomach wasn't tolerating the milk and it was becoming hard and bloated.
We have decided to allow Bela to be part of a research study with Children's Oncology Group which is good in that she'll get a particular test to help decide how to best treat her and we'll (incl. doctors) recieve more info for her treatment.
She MAY need a marrow transplant but we'll burn that bridge when we come to it.
She will still recieve all the same meds she'd recieve if she weren't in the study. there are new meds being tested that maybe she'll get depending on the results of the study on her. And she will recieve the best known therapy. We praise God that she is at Miller Children's, one of the best Children's hospitals in the US.
Her treatment as of now will include 8-10 drugs whose side effects are very hard. She will have to go back on IV feedings and will be in remission for 4-6 weeks after each treatment. Her risk of infection is high. She will need a central line placed surgically into her chest with two tubes coming out for them to take blood and insert meds.
She will be in the hospital for at least 8-10 months. Recovery from each treatment takes approximately 10 weeks. There are different cycles of chemotherapy. Right now this is confusing even to me. I am typing from the notes I took during the meeting. I'm sure we'll find out more as we go.
Tomorrow we have another meeting to discuss the 100 page pamphlet the dr. gave us today and we'll sign consents and learn more about treatment and side effects.
We do know they are going to treat for many cycles of chemotherapy because they don't know when the last cell is dead (there's no way to know that) and more chemo equals more side effects and they can't give chemo forever. They will do bone marrow biopsies at the end of recovery from chemo to check the cells.
To test the brain they will need spinal fluid. They will give chemo into the spinal fluid because the brain and spine have a special covering that don't allow the chemo to enter it so they have to put the chemo directly into the fluid.
We appreciate all the prayers so far. It is true what we've heard that it's amazing what you can handle. A person adjusts. Just these past few months after hearing about people sick and dying I've thought, "I can't imagine going through that."
God's ways are not our ways and we believe that there is a special purpose and God is in control. I do not believe this is a coincidence or happened by chance. The hardest part for us right now is seeing our baby suffer and knowing that this is only the beginning of her pain. Here are some things we'd like you to pray ...
1. That God touches her and heals her completely
2. That she has minimal pain and discomfort
3. That she will be a miracle for God's glory and will respond very well to treatment and be home before anyone ever expects it!
4. For us to have wisdom in how to share time with Santi and also be at the hospital and not to overheat from exhaustion, emotionalism(a new word!), etc.
Right now we are taking Santi to see Madagascar 3. Please pray for him at this time too. It is hard for me to see all of Bela's things waiting for her in our room and I want him to be playing with his little sister a year from now at the park. It is hard for me to see her basinet in our room. It is the same one my mom slept in as a baby and me and my sisters. Santi was too big for it by the time we moved back here and I don't know if Bela will get to use it. All her clothes and cloth diapers are washed and ready for her to wear, her toys are waiting for her. please pray for us to be strong and stay standing on God's Word. Thank you.
He did tell us that Bela's been diagnosed with Acute Myeloid Leukemia. It's commonly seen in kids under 6 months but isn't a common form of leukemia. This explains why her liver and spleen are enlarged. She may have leukemia cells in the stomach or brain but aren't going to test those areas. They know it's in the blood.
She was moved to an isolation room today for her benefit, since her immune system is compromised. We have to now wear gloves and gowns when we go in. She had a feeding tube which she didn't have when I left the hospital yesterday afternoon. She's still recieving breast milk but her stomach wasn't tolerating the milk and it was becoming hard and bloated.
We have decided to allow Bela to be part of a research study with Children's Oncology Group which is good in that she'll get a particular test to help decide how to best treat her and we'll (incl. doctors) recieve more info for her treatment.
She MAY need a marrow transplant but we'll burn that bridge when we come to it.
She will still recieve all the same meds she'd recieve if she weren't in the study. there are new meds being tested that maybe she'll get depending on the results of the study on her. And she will recieve the best known therapy. We praise God that she is at Miller Children's, one of the best Children's hospitals in the US.
Her treatment as of now will include 8-10 drugs whose side effects are very hard. She will have to go back on IV feedings and will be in remission for 4-6 weeks after each treatment. Her risk of infection is high. She will need a central line placed surgically into her chest with two tubes coming out for them to take blood and insert meds.
She will be in the hospital for at least 8-10 months. Recovery from each treatment takes approximately 10 weeks. There are different cycles of chemotherapy. Right now this is confusing even to me. I am typing from the notes I took during the meeting. I'm sure we'll find out more as we go.
Tomorrow we have another meeting to discuss the 100 page pamphlet the dr. gave us today and we'll sign consents and learn more about treatment and side effects.
We do know they are going to treat for many cycles of chemotherapy because they don't know when the last cell is dead (there's no way to know that) and more chemo equals more side effects and they can't give chemo forever. They will do bone marrow biopsies at the end of recovery from chemo to check the cells.
To test the brain they will need spinal fluid. They will give chemo into the spinal fluid because the brain and spine have a special covering that don't allow the chemo to enter it so they have to put the chemo directly into the fluid.
We appreciate all the prayers so far. It is true what we've heard that it's amazing what you can handle. A person adjusts. Just these past few months after hearing about people sick and dying I've thought, "I can't imagine going through that."
God's ways are not our ways and we believe that there is a special purpose and God is in control. I do not believe this is a coincidence or happened by chance. The hardest part for us right now is seeing our baby suffer and knowing that this is only the beginning of her pain. Here are some things we'd like you to pray ...
1. That God touches her and heals her completely
2. That she has minimal pain and discomfort
3. That she will be a miracle for God's glory and will respond very well to treatment and be home before anyone ever expects it!
4. For us to have wisdom in how to share time with Santi and also be at the hospital and not to overheat from exhaustion, emotionalism(a new word!), etc.
Right now we are taking Santi to see Madagascar 3. Please pray for him at this time too. It is hard for me to see all of Bela's things waiting for her in our room and I want him to be playing with his little sister a year from now at the park. It is hard for me to see her basinet in our room. It is the same one my mom slept in as a baby and me and my sisters. Santi was too big for it by the time we moved back here and I don't know if Bela will get to use it. All her clothes and cloth diapers are washed and ready for her to wear, her toys are waiting for her. please pray for us to be strong and stay standing on God's Word. Thank you.
Oh, my, Laura. So sorry to hear all of this. We will definitely be praying for all of you. We love you very much!!
ReplyDeleteLaura and Beto (Santi too),
ReplyDeleteI just wanted to let you know how fiercely we are praying for you guys. You are in our hearts and on our minds constantly and we are lifting up your precious Bela to our mighty Father. I wish we were not so far away and that we could be there to pray WITH you. Please know that we are loving you and praying for a MIRACLE for your family. Brenda & Vince
Oh Laura, I have been praying so so so hard for it NOT to be leukemia. But I know as you said that our plans are not always God's plans. I know He loves little Bela more than we could ever know. I will continue to pray for all that you have listed and for strength for you and Beto and great wisdom and care for her whole medical team. The Leukemia & Lymphoma Society is here for you - there are many resources on www.LLS.org.
ReplyDeleteLove,
Dianne Callahan
Laura, You and your family are in my prayers. If you need anything let me know. I wanted to tell you about a remarkable lady at Miller's Sharon Yagerlener in Pastoral Care. She helped me through my time with Emily. She is amazing. Let me know if you need anything. Much love, Janice
ReplyDeleteLaura and Beto, somehow I lost the link to your blog and am so glad your Mom posted it on Facebook. I have been praying for y'all...especially baby Bela. It really is amazing how God allows you to handle things you never thought you'd be able to. He is good.
ReplyDeleteI love you and am so sorry your baby is having to go through this tough time. I'll continue to pray for her complete healing and that you guys will receive the strength and wisdom that only God can give through this.
Dios les bendiga mucho!
Breathing prayers for you and your sweet Bela with every breath. May God grant you rest and strength for the days and months ahead.
ReplyDelete-Patty