Hello everyone,We have finally come to the big transplant phase of Lila's treatment. She is still in remission, is very healthy right now, is receiving her own stem cells (versus a donors), and she is young - all big plusses for starting out this ordeal. Over the last week and a half she has gone through a ton of tests - heart, lungs, kidney, liver, etc - which you can read all about on Annie's blog at www.anniehowington.blogspot.com . Annie warns that it's long and boring, I think it's a witness of what Annie is having to go through! (You can follow Lila's progress on Annie's blog too.) Lila came through with flying colors. She also had a developmental test this morning. She is behind physically because of all the surgeries and chemo, but they said she is otherwise a normal 11-month old and shows no signs of impaired development. Big sigh of relief as this has been a major concern after all of her brain surgeries. After all the tests, they found two things: first is a sinus infection that is probaly due to her prolonged use of a feeding tube. They will remove her feeding tube when she goes into the hospital on Wednesday (tomorrow!) and she is on antibiotics for that. She will be receiving nutrition through her IV from now on. Annie and Ben will even have to continue that after she leaves the hospital. They also found that her blood coagulation count is elevated. They can't figure out why (Where is Dr. House when you need him?), and have run a battery of tests to try and determine why. But as of right now they will probably sign off on letting her have surgery Weds. (to put in the transplant port - it's a different port than her chemo port) because the count is not too high, but is definitely elevated. The doctors say that it has no impact on her clinically other than increasing the risk of bleeding during the surgery. So once she is past the surgery, it is no longer a primary concern. The doctors are more frustrated than anything as to why they can't figure out what is causing it.When she goes in tomorrow she will have surgery first and then be admitted directly to the isolation ward. (The 5200 wing of Duke Hospital). The children's isolation ward is a little city unto itself. You enter through 2 sets of self-sealing doors, remove your shoes, put on your designated hospital shoes and wash your hands at the bank of sinks while reciting the Pledge of Allegiance or singing Happy Birthday twice (both are the required length (15 seconds) for washing your hands). There are people there from all over the world and those children have a parent literally move in to the hospital with them. They even have their own newsletter which they took Lila's picture for! This ward has it's own air system, seperate from the hospital, and each room has it's own air filtration system. Doors have to be kept closed at all times, so someone has to be in the room with Lila at all times. The hospital requires that be a small core number of people. So Annie will be there during the days and I will be her backup. Ben will be there during the nights and Janelle will be his backup. We want to preserve Ben and Annie's sanity, so we plan on forcing them to take a day/night off every 3 or 4 days. Annie's parents are here from Texas and plan on staying indefinately as Jack's caregivers. Lori and Kimmy will be their backup to give them much needed breaks too!Since Annie, Ben, Janelle and myself will be with Lila the most during her transplant, we are making every effort to stay clear of people who are sick or feel like they are getting sick. So if you are around us and feel like you have a cold coming on, please let us know. We could easily pass anything on to Lila without even knowing it. We will have a mask with us at all times and can easily put a mask on ourselves if there is any risk.Up until one minute before they begin the chemo, Ben and Annie can change their minds about having her have the transplant, but after that there is no going back. That is because, although all chemotherapy is potentially lethal, this dose will be so large that Lila would die without the transplant since it will destroy all of her bone marrow. All of the tests were done because the high dose of chemo can also severely damage her organs, even to the point of multiple organ failure, which would be fatal. So they want to make sure nothing else is wrong with her before they do this. She will have years of follow up with the transplant doctors to track her organs. You may wonder why they are going through with this when Lila is in remission. Lila's type of brain cancer is very rare in such a young child and recurrence is a very real danger, so this is being done to deliver what we are praying will be the knock-out punch to her cancer. Even with the concerns of infection and organ failure from the transplant, recurrence is still their main concern, even for the transplant doctors.On Thursday, Friday and Saturday Lila will receive the chemo drug Carboplatin. On Sunday, Monday and Tuesday she will recive Etopicide and Thiotepa. Thiotepa is excreted through your pores and severly burns the skin, so during those days Lila will be getting full baths every 4 hours. (she hates taking baths) She then has 2 days of rest. The days I have just described are marked on her chart as days -9 through -1. Transplant day is day 0. Those pre-transplant days will be her best days. she'll be vomitting but the real side effects of the chemo don't kick in until day 7 to 9 (two weeks after being admitted). The worst of those side effects will be open ulcerated sores throughout her mouth, down her esophogus and in her stomach lining.The transplant itself is very uneventful. Very similar to a blood transfusion. Lila's chart then shows 100 days of post transplant follow up. How long she will be in the hospital will be determined by how fast Lila heals. The doctors are guessing 3 1/2 to 5 weeks in the hospital. Then 2 weeks in an apartment within 10 minutes of the hospital (we are 45 minutes away, which is too far in case of an emergency). During those two weeks she'll be going into the clinic daily. Once she can return home, she will continue going back to clinic every day until her counts are normal again. Most likely it won't continue for 100 days, but it will be a while.Many people have asked what they can do. We appreciate your help so much!! The most obvious is keep on fasting and praying for her. The power of prayer in healing Lila and comforting all of us has been miraculous. The hospital encourages the families to decorate their child's room, so if any of you want to send a colorful children's card to Lila, you can send them here to our home and we will get them up there. ( Lila Howington 7913 Mourning Dove Rd. Raleigh, NC 27615). You can email Ben and Annie directly at benhowington@gmail.com and anniehowington@gmail.com. Lila cannot be around fresh flowers or fresh fruit. Anything that goes into her room, toys, clothing, etc has to be washed twice in very hot water. So cards and letters are the easiest for her to get.I will continue to keep all of you updated on how she is doing. Thank you, thank you, thank you, for your love and encouragement!! Love, Julie
Tuesday, January 13, 2009
Lila's Bumpy Road
Hello everyone,We have finally come to the big transplant phase of Lila's treatment. She is still in remission, is very healthy right now, is receiving her own stem cells (versus a donors), and she is young - all big plusses for starting out this ordeal. Over the last week and a half she has gone through a ton of tests - heart, lungs, kidney, liver, etc - which you can read all about on Annie's blog at www.anniehowington.blogspot.com . Annie warns that it's long and boring, I think it's a witness of what Annie is having to go through! (You can follow Lila's progress on Annie's blog too.) Lila came through with flying colors. She also had a developmental test this morning. She is behind physically because of all the surgeries and chemo, but they said she is otherwise a normal 11-month old and shows no signs of impaired development. Big sigh of relief as this has been a major concern after all of her brain surgeries. After all the tests, they found two things: first is a sinus infection that is probaly due to her prolonged use of a feeding tube. They will remove her feeding tube when she goes into the hospital on Wednesday (tomorrow!) and she is on antibiotics for that. She will be receiving nutrition through her IV from now on. Annie and Ben will even have to continue that after she leaves the hospital. They also found that her blood coagulation count is elevated. They can't figure out why (Where is Dr. House when you need him?), and have run a battery of tests to try and determine why. But as of right now they will probably sign off on letting her have surgery Weds. (to put in the transplant port - it's a different port than her chemo port) because the count is not too high, but is definitely elevated. The doctors say that it has no impact on her clinically other than increasing the risk of bleeding during the surgery. So once she is past the surgery, it is no longer a primary concern. The doctors are more frustrated than anything as to why they can't figure out what is causing it.When she goes in tomorrow she will have surgery first and then be admitted directly to the isolation ward. (The 5200 wing of Duke Hospital). The children's isolation ward is a little city unto itself. You enter through 2 sets of self-sealing doors, remove your shoes, put on your designated hospital shoes and wash your hands at the bank of sinks while reciting the Pledge of Allegiance or singing Happy Birthday twice (both are the required length (15 seconds) for washing your hands). There are people there from all over the world and those children have a parent literally move in to the hospital with them. They even have their own newsletter which they took Lila's picture for! This ward has it's own air system, seperate from the hospital, and each room has it's own air filtration system. Doors have to be kept closed at all times, so someone has to be in the room with Lila at all times. The hospital requires that be a small core number of people. So Annie will be there during the days and I will be her backup. Ben will be there during the nights and Janelle will be his backup. We want to preserve Ben and Annie's sanity, so we plan on forcing them to take a day/night off every 3 or 4 days. Annie's parents are here from Texas and plan on staying indefinately as Jack's caregivers. Lori and Kimmy will be their backup to give them much needed breaks too!Since Annie, Ben, Janelle and myself will be with Lila the most during her transplant, we are making every effort to stay clear of people who are sick or feel like they are getting sick. So if you are around us and feel like you have a cold coming on, please let us know. We could easily pass anything on to Lila without even knowing it. We will have a mask with us at all times and can easily put a mask on ourselves if there is any risk.Up until one minute before they begin the chemo, Ben and Annie can change their minds about having her have the transplant, but after that there is no going back. That is because, although all chemotherapy is potentially lethal, this dose will be so large that Lila would die without the transplant since it will destroy all of her bone marrow. All of the tests were done because the high dose of chemo can also severely damage her organs, even to the point of multiple organ failure, which would be fatal. So they want to make sure nothing else is wrong with her before they do this. She will have years of follow up with the transplant doctors to track her organs. You may wonder why they are going through with this when Lila is in remission. Lila's type of brain cancer is very rare in such a young child and recurrence is a very real danger, so this is being done to deliver what we are praying will be the knock-out punch to her cancer. Even with the concerns of infection and organ failure from the transplant, recurrence is still their main concern, even for the transplant doctors.On Thursday, Friday and Saturday Lila will receive the chemo drug Carboplatin. On Sunday, Monday and Tuesday she will recive Etopicide and Thiotepa. Thiotepa is excreted through your pores and severly burns the skin, so during those days Lila will be getting full baths every 4 hours. (she hates taking baths) She then has 2 days of rest. The days I have just described are marked on her chart as days -9 through -1. Transplant day is day 0. Those pre-transplant days will be her best days. she'll be vomitting but the real side effects of the chemo don't kick in until day 7 to 9 (two weeks after being admitted). The worst of those side effects will be open ulcerated sores throughout her mouth, down her esophogus and in her stomach lining.The transplant itself is very uneventful. Very similar to a blood transfusion. Lila's chart then shows 100 days of post transplant follow up. How long she will be in the hospital will be determined by how fast Lila heals. The doctors are guessing 3 1/2 to 5 weeks in the hospital. Then 2 weeks in an apartment within 10 minutes of the hospital (we are 45 minutes away, which is too far in case of an emergency). During those two weeks she'll be going into the clinic daily. Once she can return home, she will continue going back to clinic every day until her counts are normal again. Most likely it won't continue for 100 days, but it will be a while.Many people have asked what they can do. We appreciate your help so much!! The most obvious is keep on fasting and praying for her. The power of prayer in healing Lila and comforting all of us has been miraculous. The hospital encourages the families to decorate their child's room, so if any of you want to send a colorful children's card to Lila, you can send them here to our home and we will get them up there. ( Lila Howington 7913 Mourning Dove Rd. Raleigh, NC 27615). You can email Ben and Annie directly at benhowington@gmail.com and anniehowington@gmail.com. Lila cannot be around fresh flowers or fresh fruit. Anything that goes into her room, toys, clothing, etc has to be washed twice in very hot water. So cards and letters are the easiest for her to get.I will continue to keep all of you updated on how she is doing. Thank you, thank you, thank you, for your love and encouragement!! Love, Julie
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