As many of you may already know, my brother Layton was diagnosed with acute lymphoblastic leukemia on September 3rd. This webpage will be used as a way for me to keep everyone up to date on his journey as well as allow people to post messages that they would like him to see. I did have a blog going through another site, but due to so many people asking us if there was a way they could donate to help pay for his medical bills or whatever he may need this page made it possible for us to make that happen. At the bottom of this page is a link that will send you to PayPal. My parents have decided that if we receive more than we need to pay for medical bills (we are hoping the insurance will cover most of it but we all know how insurance companies work) we will donate the extra money to the Ronald McDonald House or a research group for leukemia. As I mentioned earlier if you could leave an encouraging message for Layton (or if you want to mail a card) that would really make his day!
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I would also like to thank everyone for the all the prayers and those who are taking time out of their lives to help us. :D
And the Battle Begins
On September 2nd Layton was taken to the emergency room for a bloody nose that he could not get to stop bleeding along with a bruise that appeared overnight for no apparent reason. Once they ran blood tests they informed us that he had leukemia and they transferred him to a pediatrics hospital to receive treatment. He was transferred to Sunrise where they ran more test to help determine what type of leukemia he had as well as determining what type of treatment he would need.
On his second day they gave him platelets and a blood transfusion and went ahead and did a lumbar puncture to extract bone marrow which was going to tell us which type of acute leukemia he has (there are only two, one has a better "cure" rate than the other) as well has giving him a small dose of chemo to start killing cancer cells. That evening they informed us that he has acute lymphoblastic leukemia and that his T cells were effected. They set up a treatment plan and he is going to be doing a mixture of chemo, radiation, and medication for the next three years. Since he is going to be doing chemo and it will weaken his immune system and he will not be allowed to go to school for eight months, but we were glad to find out that his school is willing to work with us to make sure he keeps up in school and that he will graduate with his class.
Wednesday was a pretty laid back day for Layton. He had an ultrasound of his heart and that was his "procedure" for the day. He spent the day playing the wii with me and my dad and then caught up on some much needed sleep.
Thursday (9/5) was a pretty big and busy day for him. He went into surgery that morning to get a portacath put into his chest. This device helps eliminate poking poor Layton with needles every time they need to draw blood, put in an IV and to give him medications. He has a dual portacath which allows them to continue an IV as well as giving him his chemo treatment (this will help him in the long run since he will be doing chemo for a while). It's a small disk looking thing that sits just below the skin and has a catheder that the tip is in a vein that sits right above the heart which allows the medication to get pumped into the blood faster. He recovered pretty well and was up playing the wii again and then he had a pretty big group of visitors! Shelby brought his three other sisters up to see him (this was the first time Madison and Lindsay got to see him since he was taken to the ER) and Tami and her son Oliver came along with them. He was in a great mood and was excited to have his whole family in the room with him. After they left, he was given his first real dose of chemo and after this initial dose he is expected to receive a dose every six hours for the next few days.
Friday (9/6) Well poor Layton did start chemo last night and he has been having some side effects to it. He's been pretty sick, but he's a trooper! Since the first type of medication was harsh on him they are going to try a different one and hopefully it won't be as bad for him. Our Aunt Estella is coming out tonight to help out for the weekend and we are all excited to see her! We are all stressed beyond belief but God is giving us the strength to keep moving forward and to be strong for Layton's sake.
Sunday (9/8) These past two days Layton has been doing chemo plus medication and has been getting a few side effects, but they aren't as bad as they were before. They did some blood work this morning and are worried because his platelet count is low (well it was already low when he was admitted but they did give him platelets to help boost the count). I believe they are going to give him more platelets sometime today to help increase his count since they are concerned his nose will start bleeding again. He has been getting up and walking around more and has finally gotten down to the teen lounge they have on his floor. His best friend Zach has been spending the whole day with him and he is loving every moment of it! (I guess playing Mario party on wii with me wasn't good enough for him, he needed his guy friend to play Call of Duty with). My mom told me that they are planning on doing another lumbar puncture on Thursday and if everything looks good enough, they are going to send him home on Thursday or Friday! Once he is home he will still be dong a lot of outpatient stuff, but I bet he can't wait to get back to his own bedroom and not be woken up every time his IV machine beeps because his medications are running on low.
On September 2nd Layton was taken to the emergency room for a bloody nose that he could not get to stop bleeding along with a bruise that appeared overnight for no apparent reason. Once they ran blood tests they informed us that he had leukemia and they transferred him to a pediatrics hospital to receive treatment. He was transferred to Sunrise where they ran more test to help determine what type of leukemia he had as well as determining what type of treatment he would need.
On his second day they gave him platelets and a blood transfusion and went ahead and did a lumbar puncture to extract bone marrow which was going to tell us which type of acute leukemia he has (there are only two, one has a better "cure" rate than the other) as well has giving him a small dose of chemo to start killing cancer cells. That evening they informed us that he has acute lymphoblastic leukemia and that his T cells were effected. They set up a treatment plan and he is going to be doing a mixture of chemo, radiation, and medication for the next three years. Since he is going to be doing chemo and it will weaken his immune system and he will not be allowed to go to school for eight months, but we were glad to find out that his school is willing to work with us to make sure he keeps up in school and that he will graduate with his class.
Wednesday was a pretty laid back day for Layton. He had an ultrasound of his heart and that was his "procedure" for the day. He spent the day playing the wii with me and my dad and then caught up on some much needed sleep.
Thursday (9/5) was a pretty big and busy day for him. He went into surgery that morning to get a portacath put into his chest. This device helps eliminate poking poor Layton with needles every time they need to draw blood, put in an IV and to give him medications. He has a dual portacath which allows them to continue an IV as well as giving him his chemo treatment (this will help him in the long run since he will be doing chemo for a while). It's a small disk looking thing that sits just below the skin and has a catheder that the tip is in a vein that sits right above the heart which allows the medication to get pumped into the blood faster. He recovered pretty well and was up playing the wii again and then he had a pretty big group of visitors! Shelby brought his three other sisters up to see him (this was the first time Madison and Lindsay got to see him since he was taken to the ER) and Tami and her son Oliver came along with them. He was in a great mood and was excited to have his whole family in the room with him. After they left, he was given his first real dose of chemo and after this initial dose he is expected to receive a dose every six hours for the next few days.
Friday (9/6) Well poor Layton did start chemo last night and he has been having some side effects to it. He's been pretty sick, but he's a trooper! Since the first type of medication was harsh on him they are going to try a different one and hopefully it won't be as bad for him. Our Aunt Estella is coming out tonight to help out for the weekend and we are all excited to see her! We are all stressed beyond belief but God is giving us the strength to keep moving forward and to be strong for Layton's sake.
Sunday (9/8) These past two days Layton has been doing chemo plus medication and has been getting a few side effects, but they aren't as bad as they were before. They did some blood work this morning and are worried because his platelet count is low (well it was already low when he was admitted but they did give him platelets to help boost the count). I believe they are going to give him more platelets sometime today to help increase his count since they are concerned his nose will start bleeding again. He has been getting up and walking around more and has finally gotten down to the teen lounge they have on his floor. His best friend Zach has been spending the whole day with him and he is loving every moment of it! (I guess playing Mario party on wii with me wasn't good enough for him, he needed his guy friend to play Call of Duty with). My mom told me that they are planning on doing another lumbar puncture on Thursday and if everything looks good enough, they are going to send him home on Thursday or Friday! Once he is home he will still be dong a lot of outpatient stuff, but I bet he can't wait to get back to his own bedroom and not be woken up every time his IV machine beeps because his medications are running on low.
LAYTON IS COMING HOME EARLY!!
(9/10) Sorry for the late post and the lack of posting yesterday but things here have been pretty crazy! Especially today since we found out that Layton could come home if his blood work looked ok. Well after he received a blood transfusion and platelets they let him come home! (Well as of right now it is almost 9pm and he isn't home, BUT they have been going through the check out process for the past three hours) Just the preparation for getting the house ready for Layton has been exhausting. We thought we were going to have an extra two days so Lindsay, Sierra, and I have been running around all afternoon trying to get his room nice and clean (and everything disinfected) and of course we had to make sure that he knew that we missed him and that we are glad that he is back home (hence the balloons and homemade banner :] ). It is going to be a huge change for all of us once he gets home. We went from not having to be in a strict routine to having one. Once we get home from public places (school, work, movie, etc.) we have to change our clothes, we have to constantly wash our hands, and we have to run everything in the house from light switches to the banisters down with a Clorox wipe. He will still have to go to the hospital on Thursday to get his lumbar puncture, but the doctor gave him the choice of waiting until Thursday or coming home today, and I don't blame him for wanting to come home early! In this past week of him being in treatment he has lost 6 pounds and will hardly eat anything! Yesterday we finally found something that he will eat, after the constant turn down of ice cream and milkshakes, he started to crave salted soft pretzels! Of all things! This boy has at least 5 people who would bend over backwards to get him whatever he wants whenever he wants, and yet he doesn't ask for anything. Hopefully once he gets home and settled in, he will start eating more since he is back in his home and will take advantage of having all of us here to do stuff for him.
The Past Almost Two Weeks
Sorry again for not posting more regularly, but things have been keeping me busy. Layton has been having ups and downs on how he has been feeling. He goes in every Thursday for a round of chemo and every Monday to get blood work done to check his blood count. His platelets are still really low and he has been getting platelets to help boost his count. Layton has been taking his treatments pretty well. The poor thing has been getting sick during the weekend and my mom and the doctors are wondering if its the chemo or a medication he takes since this medication is only given to him Friday-Sunday. We can all tell when he is feeling good because he is down stairs playing Call of Duty on our new Xbox Kinect (especially when he starts trash talking!). This child also has the weirdest food cravings (my mom and him always joke that he is pregnant! haha). One day for lunch he requ/ested Mcdonalds french fries, a strawberry lemonade, and an apple pie. Not to mention the late night runs my dad and I have run to taco bell or a near by gas station to get random food he is craving. We do this because he just won't eat anything. When he last went in he had lost 14 pounds since he went in and as most of you know he is a stick and are probably trying to figure out how he has managed to drop that kind of weight. The doctors told him if he lost any more weight that they would have to admit him to the hospital and put him on a feeding tube. After he was told that he has been eating a little bit more than he had before and the next time he went in he had maintained his current weight, but the doctors are pushing him to gain some weight. He started taking his online classes last week. He is taking an English, math, science, and a government class. All of his classes meet once a week online and then he has an assignment due every week for each class. The class sizes are pretty small (one of his classes has only two other people!) so that will help him be more interactive!
Week of 9/21
When Layton went in for his follow up, his blood work came back ok and he didn't have to go in for a blood/platelet transfusion, but the doctors told us that he has thursh. When he went in on Thursday he was down another 6 pounds putting him at 94 pounds. He has changed quite a bit this past week. He was never a talkative kid, but there for a while he was always talking and seemed to be up to the fight, but the last few days he will only grunt to answer us. He fights my mom constantly on taking his medication, which is somewhat understandable I mean the kid is on a ton of different medicines but he is old enough to understand that it is crucial for him to be on top of it. We all knew that the further into chemo he got, the worse it was going to get, but its hard. He is starting to lose his hair and when I looked at him the other day he looked so skinny. He doesn't act like he wants to fight this. We have all tried talking to him and he just ignores us or grunts, he won't eat, he acts like he is shutting down. He started to run a fever on Friday night and my parents ended up taking him to the ER and within an hour his temperature went from 100.5 to 104. The doctors still don't know what has caused his fever to spike (they got it down but then Saturday afternoon it started to go up) and he has been in the hospital since. The doctors keep pushing the issue of a feeding tube if he doesn't start putting on some weight and I have a feeling that they are going to have to do one. It sounds scary and I know I wouldn't have to have one, but maybe it's the push he needs to eat on his own. It's just hard watching him go through this and how it has broken him. He was fighting it all so well up until now, but our aunt was here this weekend and she sat down and talked to him, so hopefully that helped. I really want to see him get through this, but the only thing I can do is sit on the sidelines cheering him on while I rather be the one doing this for him or something more than I can do now. If everyone can keep praying for him that would be great, he really needs to find the strength to fight this. If you are old school and want to send him snail mail every now and then I think that would help remind him that there are so many people out there who also want him to fight this. I would like to say thank you to everyone who has been praying, who has already sent him a card, and the families that have been so kind to take time out of their lives to bring us dinner during the past few weeks. We really appreciate everything everyone has been doing for us!
Week of 10/07
These past two-ish weeks have been very intense for Layton and all of us. While in the hospital he would not eat or drink. He started complaining about having stomach pains and finally they got around to seeing what was the cause (they just thought he was making up excuses as to why he wouldn't eat and he was starting to turn yellow). They did an ultrasound on his gallbladder region on Saturday and found that the lining around the gallbladder was thicker than it should be and was full of sludge and that he had fluid around one of his lungs. They did a surgery consult and the doctors were talking about removing it but then one of them thought it was possible that there was a gall stone that was too big to pass which would explain the sludge and they decided to do an MRI. They did blood work the night before (last night the 7th) and one of his vitals was a little higher than it should be but not too terribly high and then they did the same test this morning with the results higher than the were the night before. This was telling the doctors that his liver was starting to shut down and they needed to send him to Stanford to be put on a transplant list in case they weren't able to reverse the damage. My mom called me at 10:45 this morning to tell me they were going to transfer him sometime this evening and she had a few errands for me to run (luckily I have an amazing boss who found someone else to watch her daughter at the last minute so I could get everything done). Once I was done with those errands I called to see what the plan was and they had moved up his departure to this afternoon. So I offered to take the kids out of school early so we could all see Layton and mom before they left for who knows how long. My dad said he would take care of Sierra and I got the other two and was on my way home to pick up the suitcase I had packed when my mom informed me that they were moving him at 2 (I got this notice at 1). We all dashed over to the hospital to see Layton and this was the first time I had seen him since he was admitted almost two weeks ago. Just the sight of him broke my heart. He is definitely losing his hair at a fast rate and is incredibly frail. I got him to talk to me and laugh so I felt somewhat accomplished, but they had him on so many IV type medicines (at least 7) and on oxygen. He kept pulling the oxygen out because it was irritating his nose and I caught him and told him he needed to put it back in his nose and he said ok and put it under his upper lip. I laughed and said Layton that isn't your nose you silly boy and he kinda smiled. He has been very out of it. Some of the conversations he has make no sense or come out of the blue. Sierra didn't make it to the hospital in time to see him before he left and she was very upset and sad, but we are going to try to drive up there next weekend to see him (since he's only 8 hours away). My dad and one of his friends, who is a pastor, were driving up there to meet with Layton and my mom since they were going to the airport in an ambulance and then going in a small plane to an airport near Stanford and then taking another ambulance to the hospital there. If everyone can keep praying for him that would be great! Some happy news for everyone though, they did a lumbar puncture on Thursday and the doctors told us that his bone marrow had gone into remission! So he is getting rid of the cancer but he has so many other obstacles he needs to beat right now.
The Past Almost Two Weeks
Sorry again for not posting more regularly, but things have been keeping me busy. Layton has been having ups and downs on how he has been feeling. He goes in every Thursday for a round of chemo and every Monday to get blood work done to check his blood count. His platelets are still really low and he has been getting platelets to help boost his count. Layton has been taking his treatments pretty well. The poor thing has been getting sick during the weekend and my mom and the doctors are wondering if its the chemo or a medication he takes since this medication is only given to him Friday-Sunday. We can all tell when he is feeling good because he is down stairs playing Call of Duty on our new Xbox Kinect (especially when he starts trash talking!). This child also has the weirdest food cravings (my mom and him always joke that he is pregnant! haha). One day for lunch he requ/ested Mcdonalds french fries, a strawberry lemonade, and an apple pie. Not to mention the late night runs my dad and I have run to taco bell or a near by gas station to get random food he is craving. We do this because he just won't eat anything. When he last went in he had lost 14 pounds since he went in and as most of you know he is a stick and are probably trying to figure out how he has managed to drop that kind of weight. The doctors told him if he lost any more weight that they would have to admit him to the hospital and put him on a feeding tube. After he was told that he has been eating a little bit more than he had before and the next time he went in he had maintained his current weight, but the doctors are pushing him to gain some weight. He started taking his online classes last week. He is taking an English, math, science, and a government class. All of his classes meet once a week online and then he has an assignment due every week for each class. The class sizes are pretty small (one of his classes has only two other people!) so that will help him be more interactive!
Week of 9/21
When Layton went in for his follow up, his blood work came back ok and he didn't have to go in for a blood/platelet transfusion, but the doctors told us that he has thursh. When he went in on Thursday he was down another 6 pounds putting him at 94 pounds. He has changed quite a bit this past week. He was never a talkative kid, but there for a while he was always talking and seemed to be up to the fight, but the last few days he will only grunt to answer us. He fights my mom constantly on taking his medication, which is somewhat understandable I mean the kid is on a ton of different medicines but he is old enough to understand that it is crucial for him to be on top of it. We all knew that the further into chemo he got, the worse it was going to get, but its hard. He is starting to lose his hair and when I looked at him the other day he looked so skinny. He doesn't act like he wants to fight this. We have all tried talking to him and he just ignores us or grunts, he won't eat, he acts like he is shutting down. He started to run a fever on Friday night and my parents ended up taking him to the ER and within an hour his temperature went from 100.5 to 104. The doctors still don't know what has caused his fever to spike (they got it down but then Saturday afternoon it started to go up) and he has been in the hospital since. The doctors keep pushing the issue of a feeding tube if he doesn't start putting on some weight and I have a feeling that they are going to have to do one. It sounds scary and I know I wouldn't have to have one, but maybe it's the push he needs to eat on his own. It's just hard watching him go through this and how it has broken him. He was fighting it all so well up until now, but our aunt was here this weekend and she sat down and talked to him, so hopefully that helped. I really want to see him get through this, but the only thing I can do is sit on the sidelines cheering him on while I rather be the one doing this for him or something more than I can do now. If everyone can keep praying for him that would be great, he really needs to find the strength to fight this. If you are old school and want to send him snail mail every now and then I think that would help remind him that there are so many people out there who also want him to fight this. I would like to say thank you to everyone who has been praying, who has already sent him a card, and the families that have been so kind to take time out of their lives to bring us dinner during the past few weeks. We really appreciate everything everyone has been doing for us!
Week of 10/07
These past two-ish weeks have been very intense for Layton and all of us. While in the hospital he would not eat or drink. He started complaining about having stomach pains and finally they got around to seeing what was the cause (they just thought he was making up excuses as to why he wouldn't eat and he was starting to turn yellow). They did an ultrasound on his gallbladder region on Saturday and found that the lining around the gallbladder was thicker than it should be and was full of sludge and that he had fluid around one of his lungs. They did a surgery consult and the doctors were talking about removing it but then one of them thought it was possible that there was a gall stone that was too big to pass which would explain the sludge and they decided to do an MRI. They did blood work the night before (last night the 7th) and one of his vitals was a little higher than it should be but not too terribly high and then they did the same test this morning with the results higher than the were the night before. This was telling the doctors that his liver was starting to shut down and they needed to send him to Stanford to be put on a transplant list in case they weren't able to reverse the damage. My mom called me at 10:45 this morning to tell me they were going to transfer him sometime this evening and she had a few errands for me to run (luckily I have an amazing boss who found someone else to watch her daughter at the last minute so I could get everything done). Once I was done with those errands I called to see what the plan was and they had moved up his departure to this afternoon. So I offered to take the kids out of school early so we could all see Layton and mom before they left for who knows how long. My dad said he would take care of Sierra and I got the other two and was on my way home to pick up the suitcase I had packed when my mom informed me that they were moving him at 2 (I got this notice at 1). We all dashed over to the hospital to see Layton and this was the first time I had seen him since he was admitted almost two weeks ago. Just the sight of him broke my heart. He is definitely losing his hair at a fast rate and is incredibly frail. I got him to talk to me and laugh so I felt somewhat accomplished, but they had him on so many IV type medicines (at least 7) and on oxygen. He kept pulling the oxygen out because it was irritating his nose and I caught him and told him he needed to put it back in his nose and he said ok and put it under his upper lip. I laughed and said Layton that isn't your nose you silly boy and he kinda smiled. He has been very out of it. Some of the conversations he has make no sense or come out of the blue. Sierra didn't make it to the hospital in time to see him before he left and she was very upset and sad, but we are going to try to drive up there next weekend to see him (since he's only 8 hours away). My dad and one of his friends, who is a pastor, were driving up there to meet with Layton and my mom since they were going to the airport in an ambulance and then going in a small plane to an airport near Stanford and then taking another ambulance to the hospital there. If everyone can keep praying for him that would be great! Some happy news for everyone though, they did a lumbar puncture on Thursday and the doctors told us that his bone marrow had gone into remission! So he is getting rid of the cancer but he has so many other obstacles he needs to beat right now.
Layton's First Few Days at Stanford
Well Layton made it to Stanford and my parents were amazed by how much better care he was receiving! Once they got him settled in his room they ended up changing all his medications to different ones. They gave him some plasma to help his blood clot since his liver was failing and they were trying to prepare him in case he needed a transplant. His blood sugar has been good but he was very sad the first day to the point of him almost being in tears. They did a chest X-ray and the fluid around his lungs got worse they put him on a bipap machine to help him breath in and out hoping that it would help push out the fluid since they were afraid if they did a chest tube to drain the fluid it would make him bleed and they wouldn't be able to stop it. Then two days into his stay his liver started to regenerate! They still wanted to do a liver biopsy (which they did on Friday the 11th). They went in through his jugular vein (sounds painful right?) the procedure was a trans jugular liver biopsy if anyone wants more details on how that works. That evening he got a CT scan and they found an anterior mediastinal mass which is very common in Tcell ALL patients. While he was under sedation from his liver biopsy they went ahead and put in a chest tube to drain the fluid around his lung. They drained 300 mL the first night and then on Saturday they had drained 800 mL. Saturday morning they took they breathing tube out and were still waiting on lab results. None of the doctors can figure out what is causing all of this and went ahead and sent samples to the CDC to see if they had anything to contribute. As you can see in the picture my dad shaved his head to support Layton since his hair is extremely thinned out and he probably won't have any for much longer. This morning they got some results back that showed that his liver was most likely damaged by the toxins from his chemo and now his kidneys are also damaged. They are still running tests to make sure that is the cause because if it is the reason behind his organs having problems it will reverse itself overtime. Once they cleared the fluid from his lung they found fluid in is abdomen which caused his heart rate to be higher than it should be. The liver isn't breaking down the bilirubin enzyme which breaks down bile and urine but they can't figure out what is causing that. The doctors are incredibly stumped. My parents finally got a room at Ronald McDonald House but they can only have the room until Layton is out of the PICU and then they will have to find other arrangements, but they are grateful to finally have somewhere to clean up and go to get a good nap. Please keep the prayers coming!
Well Layton made it to Stanford and my parents were amazed by how much better care he was receiving! Once they got him settled in his room they ended up changing all his medications to different ones. They gave him some plasma to help his blood clot since his liver was failing and they were trying to prepare him in case he needed a transplant. His blood sugar has been good but he was very sad the first day to the point of him almost being in tears. They did a chest X-ray and the fluid around his lungs got worse they put him on a bipap machine to help him breath in and out hoping that it would help push out the fluid since they were afraid if they did a chest tube to drain the fluid it would make him bleed and they wouldn't be able to stop it. Then two days into his stay his liver started to regenerate! They still wanted to do a liver biopsy (which they did on Friday the 11th). They went in through his jugular vein (sounds painful right?) the procedure was a trans jugular liver biopsy if anyone wants more details on how that works. That evening he got a CT scan and they found an anterior mediastinal mass which is very common in Tcell ALL patients. While he was under sedation from his liver biopsy they went ahead and put in a chest tube to drain the fluid around his lung. They drained 300 mL the first night and then on Saturday they had drained 800 mL. Saturday morning they took they breathing tube out and were still waiting on lab results. None of the doctors can figure out what is causing all of this and went ahead and sent samples to the CDC to see if they had anything to contribute. As you can see in the picture my dad shaved his head to support Layton since his hair is extremely thinned out and he probably won't have any for much longer. This morning they got some results back that showed that his liver was most likely damaged by the toxins from his chemo and now his kidneys are also damaged. They are still running tests to make sure that is the cause because if it is the reason behind his organs having problems it will reverse itself overtime. Once they cleared the fluid from his lung they found fluid in is abdomen which caused his heart rate to be higher than it should be. The liver isn't breaking down the bilirubin enzyme which breaks down bile and urine but they can't figure out what is causing that. The doctors are incredibly stumped. My parents finally got a room at Ronald McDonald House but they can only have the room until Layton is out of the PICU and then they will have to find other arrangements, but they are grateful to finally have somewhere to clean up and go to get a good nap. Please keep the prayers coming!
Layton's Last Few Days
Since my last post Layton had undergone a few more test and had a few more issues. They started him on dialysis but since his heart rate was high, due to the fluid around his abdomen, they couldn't sedate him to put in the tube. He was very very brave through that and the doctors were even impressed about how well he handled it. He responded really well to it and things were looking good for him. On the 17th they did a tube down into his stomach to try to drain some more fluid and my little brother finally got his coke slurpee that he had been asking for ever since they got there (that was only because as soon it went into his stomach the tube would suck it right back out). He had a little spunk in him that day. My mom and one of our close family friends left him for not even 5 minutes to grab some water and they came back and his bed was destroyed. The sheets were everywhere and they were both shocked at what had happened but at the same time were very amused. The same day he somehow ripped off his oxygen AND his feeding tube (which is what they used to drain the fluid. This tube went from his nose into his stomach and he managed to get it out). On the 18th I received a phone call in the morning from my dad informing me that the doctors said he wasn't going to make it and he was trying to make arrangements for us to go up and say our good-byes. I was shocked. How could he have gone from a kid who finally found enough energy to have a little bit of spunk to someone who wasn't going to make it through this? The girls and I made it to the hospital that evening to see him. We all stayed with him until the end and even then we didn't want to leave his side. The doctors at Stanford believe that when he was diagnosed with ALL the cells were in his liver and once they started chemo the cells died, but didn't pass through the liver which would explain why his liver started to fail. Once that started to fail his other organs weren't too far behind. I know God doesn't give you more than you can handle, but this all just seems like too much. It was all too sudden. I was under the impression that we would at least have a day or two with him and not the short two hours that we got. I know he is in a better place and there is no more pain for him, but I want him here with us. Layton, you fought so hard and we are so proud that you never gave up. We all love you and miss you but we are also glad that you aren't suffering anymore and that you are watching over all of us right now.
Since my last post Layton had undergone a few more test and had a few more issues. They started him on dialysis but since his heart rate was high, due to the fluid around his abdomen, they couldn't sedate him to put in the tube. He was very very brave through that and the doctors were even impressed about how well he handled it. He responded really well to it and things were looking good for him. On the 17th they did a tube down into his stomach to try to drain some more fluid and my little brother finally got his coke slurpee that he had been asking for ever since they got there (that was only because as soon it went into his stomach the tube would suck it right back out). He had a little spunk in him that day. My mom and one of our close family friends left him for not even 5 minutes to grab some water and they came back and his bed was destroyed. The sheets were everywhere and they were both shocked at what had happened but at the same time were very amused. The same day he somehow ripped off his oxygen AND his feeding tube (which is what they used to drain the fluid. This tube went from his nose into his stomach and he managed to get it out). On the 18th I received a phone call in the morning from my dad informing me that the doctors said he wasn't going to make it and he was trying to make arrangements for us to go up and say our good-byes. I was shocked. How could he have gone from a kid who finally found enough energy to have a little bit of spunk to someone who wasn't going to make it through this? The girls and I made it to the hospital that evening to see him. We all stayed with him until the end and even then we didn't want to leave his side. The doctors at Stanford believe that when he was diagnosed with ALL the cells were in his liver and once they started chemo the cells died, but didn't pass through the liver which would explain why his liver started to fail. Once that started to fail his other organs weren't too far behind. I know God doesn't give you more than you can handle, but this all just seems like too much. It was all too sudden. I was under the impression that we would at least have a day or two with him and not the short two hours that we got. I know he is in a better place and there is no more pain for him, but I want him here with us. Layton, you fought so hard and we are so proud that you never gave up. We all love you and miss you but we are also glad that you aren't suffering anymore and that you are watching over all of us right now.