Well, we hit our first rough patch yesterday afternoon when Nicholas came down with a high fever - enough to concern them to do a blood culture (results in a few days) and begin a broad spectrum anitbiotic. They also gave him tylenol to control the fever and wished for the best as his immune system right now is nearly non-existent. Very Very scary time for us. It really brought the reality of his condition to the front burner. Not that we aren't already living it day by day, but even though we are here, he seems so healthy. It was easy for us to think that maybe we would be able to get off easier than most, but reality reared its ugly head yesterday and sent us into a tailspin. He became very hot and lethargic and we were told that if it was a viral thing that he would just have to fight it himself. This left us panicked since he basically has no immune system to fight anything right now.
When he wasn't responding as quickly as they anticipated him to after they gave him the antibiotics and tylenol, they transferred his care to the pediatric intensive care unit for more one on one care through the night. His heart rate was extremely high, so they began pumping him with more fluids to slow it down. Fortunately Nicholas now started to show some signs of his regular self and I started to relax, but then PICU still ordered a chest xray (nothing was found) and felt he should be on a montior for heart rate and oxygen level for the night. During this we were told that his blood pressure was returning to normal, but since his blood pressure was high without the fever, that wasn't a good thing and they needed to bring it back up (odd, but they needed to do that to keep him stable). They drew more blood for labs and determined he needed more platelets and another blood transfusion, Monitors and pumps were beeping all night long. The nurse was so loud in and out of the door - it was horrible. We only got to sleep from 4:30 - 7:30. I thought I would lose my mind.
I was told that the residents on duty, the PICU attending and Nicholas's doctor were on the phone every hour. With this course of action, his fever broke during the night, but was back up a bit high this morning. When to doctors rounded they were no longer concerned and were happy to see him coming around. They said that this type of incident will happen regularly will require a hospital stay each time it happens. For now, he will continue the antibiotics for the next 7 - 10 days. Our hopes of getting out of here by Friday have been scrapped. This was the first of many bumps in the road.
Tuesday, September 30, 2008
Monday, September 29, 2008
Monday September 29, 2008
Well it appears that we counted our chickens before they hatched, so we a bit down today. After talking with Nicholas's primary doctor here at Georgetown, we mistook the good information we were given yesterday. We did get good news, but rather than being good news that he has certain chromosomes that give a better than average prognosis, the real diagnosis was that the markers that have come back have been favorable and keeps him in a standard risk rather than putting him in a high risk category. We are still awaiting news on a third marker to confirm that he is not high risk. That information should be in by Friday. He did not meet markers to move him into low risk. Most kids don't meet those markers, hence the term standard risk, but we liked our interpretation of the news better and got our hopes up that the news meant low risk. It is still good that we aren't high risk (yet), but still a bit disappointed that it wasn't what we thought it meant, so we feel the loss.
On another note, we may not have to stay the whole month. We are nervous to bring him home and have to take on the sole responsibility for his care. So many things to monitor and medications to administer, but they won't kick us out until we are ready. He will be seen as an outpaitent at least three times per week, so we know he'll be getting quality care at least every other day. They have mentioned the possibility of home nursing care for a while, but you know no one wants to drive all the way to Poolesville! I know we can do it, but it is a lot to keep track of.
On another note, we may not have to stay the whole month. We are nervous to bring him home and have to take on the sole responsibility for his care. So many things to monitor and medications to administer, but they won't kick us out until we are ready. He will be seen as an outpaitent at least three times per week, so we know he'll be getting quality care at least every other day. They have mentioned the possibility of home nursing care for a while, but you know no one wants to drive all the way to Poolesville! I know we can do it, but it is a lot to keep track of.
Sunday, September 28, 2008
Sunday September 28, 2008
Nicholas is still doing really well considering the circumstances. He is still full of energy and personality. For this we are grateful. Nicholas's peripheal blood (what they take from your vein when you have blood drawn) shows no sign of leukemia. Friday's bone marrow biopsy, however, still shows that 60% of those cells (blood is made in the bone marrow) are leukemia cells. Although this is down from the 84% it was when we brought him in, we would have liked to seen it at 20 - 25%. Next friday they want it under 5%. Doctors are not concerned though and do see kids go from 80% to under 5% in this second week. Even then, there would still be two more weeks in the "induction" period that they consider a reasonable amount of time to work to that under 5% number. With that said, he will have to have another bone marrow biopsy next friday. Of course, I will post the results.
But the great news of the day is the the chromosonal tests they did from the first bone marrow biopsy came back as favorable as they could. He has the chromosones needed to do really well with treatment and is possibly in a low risk category. We will talk with his doctor about it tomorrow to get the specifics, but everyone around here was a buzz with what great news that was. We aren't positive with that that means, but it might mean he can follow a lesser course of chemo. Keep your fingers crossed and prayers going. Several times over the weekend things happened and I really could feel the hands of God reaching out to us. It is a powerful thing.
On a fun note, here is a little video of Nicholas jamming with my Ipod. "Low" by Flo Rida always puts a smile on his face.
But the great news of the day is the the chromosonal tests they did from the first bone marrow biopsy came back as favorable as they could. He has the chromosones needed to do really well with treatment and is possibly in a low risk category. We will talk with his doctor about it tomorrow to get the specifics, but everyone around here was a buzz with what great news that was. We aren't positive with that that means, but it might mean he can follow a lesser course of chemo. Keep your fingers crossed and prayers going. Several times over the weekend things happened and I really could feel the hands of God reaching out to us. It is a powerful thing.
On a fun note, here is a little video of Nicholas jamming with my Ipod. "Low" by Flo Rida always puts a smile on his face.
Saturday September 27, 2008
Today I got out a little bit to escape the reality of living at the hospital. It may have seemed weird to be out and about carrying on as if everything was okay, but they really stress that here, so I am following doctors orders. I am able to do this, because I have put up blinders and can only accept one result - thay my baby is going to be fine. It is a long road and we have to endure it, but I have to have the mentality that he is going to be okay and there is no other option. The doctors have said that given the results we are getting that there is no reason to think otherwise, so I am going with that.
Friday, September 26, 2008
Friday September 26, 2008
This morning Nicholas woke up starving! He hasn't hardly eaten a bite in a week, but now that he couldn't have any food because of the byopsy and spinal tap, he wants to eat everything he can find. Needless to say, it has been a rough morning trying to keep his mind off of food until 1:00!
Putting your child to sleep when you are already so emotional is very tough. I cry every time. But I do what I have to so and then slip out to starbucks so I don't dweel on it. He did well and hopefully we will have some results by 7 or so. They still expect it to show signs of Leukemia since it has only been a week, but things should be better than last week if he is responding well. Preliminary blood work already shows it is, but the truth is in the bone marrow.
He came out of his procedure asking for Funyuns, but fell back to sleep in his crib before he could eat any. They came in to do vitals since they gave him more platelets before his surgery, so he was up quickly and feasted on funyuns, tacos, chips and nacho cheese. He is very happy snacking on whatever he asks for. Life is good right now.
Those of you wondering what kind of diet he is on - well the nutritionist said that although it would be great if he ate a balanced meal, they really just want to keep the calories coming in. He can't have fresh fruits and fresh vegetables, because of the pesticides and his immune system is compromised. She will start him on some pediasure by Monday. She says kids can live on that if need be.
Rich is taking over now and I get a little break. Hope to see some of you this weekend.
Putting your child to sleep when you are already so emotional is very tough. I cry every time. But I do what I have to so and then slip out to starbucks so I don't dweel on it. He did well and hopefully we will have some results by 7 or so. They still expect it to show signs of Leukemia since it has only been a week, but things should be better than last week if he is responding well. Preliminary blood work already shows it is, but the truth is in the bone marrow.
He came out of his procedure asking for Funyuns, but fell back to sleep in his crib before he could eat any. They came in to do vitals since they gave him more platelets before his surgery, so he was up quickly and feasted on funyuns, tacos, chips and nacho cheese. He is very happy snacking on whatever he asks for. Life is good right now.
Those of you wondering what kind of diet he is on - well the nutritionist said that although it would be great if he ate a balanced meal, they really just want to keep the calories coming in. He can't have fresh fruits and fresh vegetables, because of the pesticides and his immune system is compromised. She will start him on some pediasure by Monday. She says kids can live on that if need be.
Rich is taking over now and I get a little break. Hope to see some of you this weekend.
Thursday, September 25, 2008
Thursday September 25, 2008 - Day 7
Well we are about to complete our first week here (the first two days don't count since Nicholas was not receiving chemo at the time). Three more weeks are going to get long here, but they still keep us busy and we had a glimmer of hope today that maybe we won't have to stay the entire 28 days.
Medically speaking today was uneventful. His white blood cell count is now well into the normal range, but the hemoglobin still needs some work. He didn't need any platelets or blood transfusions today, so that was nice. Tomorrow around 11 or 12, he will be put under for another bone marrow byopsy and chemo administered to the spine. This will be the plan for every friday. I don't like seeing him put under - especially when they have to re-cover the risks involved. But what can you do? It has to be done, so you just pray that those things won't happen.
On a personal note, here is what we did today: Nicholas had a fun day going outside to what we are calling our "special spot". It was a bit chili, so we didn't stay out long. But we when we came in, Stacey was here bearing gifts for Nicholas and Chilpoltle for me. Best of all, Stacey brought Funyuns! Nicholas is obsessing over them - even turning down chocolate for funyuns! This is a result of the steriod chemo he is receiving twice a day. It makes them crave the salt. Otherwise, Nicholas really isn't eating - even turning his nose up at his favorite ice cream and sprinkles. We both enjoyed her visit and it was so sad when she had to leave. Nicholas kept telling her to "stay, stay". When the elevator doors closed, we both could have cried. But while she was here they played ball and had a little picnic together.
We no sooner got back to our room When Marci, Marshall, Jordan and Victoria came to visit.
Medically speaking today was uneventful. His white blood cell count is now well into the normal range, but the hemoglobin still needs some work. He didn't need any platelets or blood transfusions today, so that was nice. Tomorrow around 11 or 12, he will be put under for another bone marrow byopsy and chemo administered to the spine. This will be the plan for every friday. I don't like seeing him put under - especially when they have to re-cover the risks involved. But what can you do? It has to be done, so you just pray that those things won't happen.
On a personal note, here is what we did today: Nicholas had a fun day going outside to what we are calling our "special spot". It was a bit chili, so we didn't stay out long. But we when we came in, Stacey was here bearing gifts for Nicholas and Chilpoltle for me. Best of all, Stacey brought Funyuns! Nicholas is obsessing over them - even turning down chocolate for funyuns! This is a result of the steriod chemo he is receiving twice a day. It makes them crave the salt. Otherwise, Nicholas really isn't eating - even turning his nose up at his favorite ice cream and sprinkles. We both enjoyed her visit and it was so sad when she had to leave. Nicholas kept telling her to "stay, stay". When the elevator doors closed, we both could have cried. But while she was here they played ball and had a little picnic together.
We no sooner got back to our room When Marci, Marshall, Jordan and Victoria came to visit. They came with cupcakes and Nicholas enjoyed watching Jordan stuff a whole one into his mouth (they were mini by the way). He wants to try it. But he had the most fun with Marshall as you can see in the video below.
Thanks to everyone for the daily emails, thoughts and prayers. You are truly a gift to us and it means the world to us.
Wednesday, September 24, 2008
Wednesday September 24, 2008
We finally made it outside today. It is a beautiful Fall day in DC, so I was not going to miss this opportunity to get outside with Nicholas. It is important for him to do some of the things he is used to doing. Our original intention was to attend an event at the entrance of the Cancer Center where Hyndai (sp?) was presenting Nicholas's doctor with a huge grant for her clinic and Hope For Henry Foundation. On the way out we were stopped by the nurse and told not to come as one of the other children attending the event was sick and they didn't want to chance Nicholas being infected.But, we were dressed and ready to roll, so we decided to get outside anyway. Nicholas even agreed to wear his mask, so I new he was ready too. Our first stop was the snack machine in the basement (snacks are all he is interested in eating) and when he got back in his stroller I noticed blood filling up in his central line. Freaked out, I bee-lined it back to our room, where the nurses told me this is fine and it will sometimes do that. I guess where I picked him up so he could put the money in the machine, it forced some blood out of the valve. Won't do that again!
Assured, we went out to the front of the building and found a crane statue to admire. Nicholas wanted to take some pictures, so we did. We then found a quiet area right in the front of the main building with some tables, so we sat there and had a little snack and climbed on the benches and watched the cars and buses go by. Nicholas found some ants to terrorize, but to him this was great fun.
We stayed out for about an hour and hope to get back out later this afternoon. When we got back, we were told that there had been a miscommunication and that they were expecting Nicholas at the Hyndai event, but by then it was too late to participate. No problem, we had our own fun.
Nicholas just finished receiving some more platelets and is taking a nap in the recliner chair. I think he is avoids his crib in the day thinking that he will just stay up, because he knows that when he sleeps they come to do something to him - mostly just vitals, but he really doesn't want to do that anymore either. He is getting better with that though too.
Tuesday September 23, 2008
No big change today - blood pressure is still a bit high, but may be because he is fighting having it done and is stressed when he sees anyone come in the door. His blood sugar came back high today, so they had to poke him in his foot at 6AM to make sure he wasn't going into a diabetic shock. Fortunately, his blood was fine and the high results were due to using the line where he gets his sugar saline fluid. They did and ultrasound on his foot today as it was irrited by something before we even came here. It just wasn't getting any better. They did not find anything in it, so now they are looking into what that could be. They say this is totaly unrelated to the Leukemia, but want to get it fixed while he is under anesthesia on Friday during his second bone marrow byopsy.
The next big day we have is the following friday where we will get additional results from the first bone marrow byopsy and tests will be run to determine whether or not he has met certain markers showing a true response to treatment.
The lack of sleep is starting to catch up with us, but I think I say that gratefully. Nicholas is still full of energy and wanting to go go go all day. Any naps he tries to take are interuppted and our days run from about 6AM - 11PM - non-stop. He is enjoying entertaining the staff and has gotten so much new stuff that he may confuse this with Christmas - minus all the other stuff he has to tolerate. We are basically staying her to keep him away from infection. I look forward to just coming, getting the meds, and getting back home. It will be three times per week, but mentally we'll be in a better place than staying with a tethered monkey in a 10 x 10 space.
Friday September 19, 2008
Nicholas actually had his surgery this morning for the installation of his central line (the valves through which he will be getting his chemo and blood drawn) and a spinal tap to determine whether or not the cancer was surrounding his brain (common with Leukemia) GOOD NEWS!! No cancer near his brain and therefore, he will not need radiation. He came out of the anesthesia a bit cranky and bloated, but has since been happy and singing. He has learned that when he sees the rubber gloves come on, something not fun is about to happen and is starting to resist even just being examined.
He was given something to relieve the extra liquid he is retaining, but will soon get him back on the fluids as being hydrated is a critical part of getting better. As the chemo breaks down all of the white blood cells, the excess can be trapped in the kidney or liver. Not being hydrated enough will cause kidney problems and require dialysis.
He is currently receiving another blood transfusion and will get some differant chemoin an hour or so. He wants to remove his central line, but hopefully he will get used to it as it is a permanent fixture until he is in remission! Keeping this in him and clean will be one of the toughest jobs. It can't get wet and needs to be flushed out and and re-bandaged every day.
He looks very smollen in the eyes from all this extra liquid, so he looks a little sad, but he is acting basically like the happy kids he usually is. We know all the lines to Toy Story now as we have seen it nonstop since we began this ordeal. He does keep reminding us that he is done and ready to go home. That part is hard to hear. But, they have popsicles at your disposal and an ice machine, so that helps distract him.
We have just moved to a new room and arranged it to more suit our needs. Since we have to be here for a long time, we need to make it work. We are in room C5209.
Thank you for all your prayers. They seem to be helping and make us feel better just knowing they are happening.
He was given something to relieve the extra liquid he is retaining, but will soon get him back on the fluids as being hydrated is a critical part of getting better. As the chemo breaks down all of the white blood cells, the excess can be trapped in the kidney or liver. Not being hydrated enough will cause kidney problems and require dialysis.
He is currently receiving another blood transfusion and will get some differant chemoin an hour or so. He wants to remove his central line, but hopefully he will get used to it as it is a permanent fixture until he is in remission! Keeping this in him and clean will be one of the toughest jobs. It can't get wet and needs to be flushed out and and re-bandaged every day.
He looks very smollen in the eyes from all this extra liquid, so he looks a little sad, but he is acting basically like the happy kids he usually is. We know all the lines to Toy Story now as we have seen it nonstop since we began this ordeal. He does keep reminding us that he is done and ready to go home. That part is hard to hear. But, they have popsicles at your disposal and an ice machine, so that helps distract him.
We have just moved to a new room and arranged it to more suit our needs. Since we have to be here for a long time, we need to make it work. We are in room C5209.
Thank you for all your prayers. They seem to be helping and make us feel better just knowing they are happening.
Thursday September 18, 2008
Nicholas has a busy 24 hours ahead of him. He will will be getting platelets tomorrow before having his surgery at 9:50. This is when they will be inserting the central line to his heart and doing a spinal tap to see if the cancer is near his brain. While he is out, they will also be giving him a chemo treatment into his spine. Right now, there is big concern about germs and he has to wear a mask just to go into the hallway. He needs to stay away from anything that could compromise his health and recovery. Which means no fresh fruit,no fresh veggies,no flowers, no yogurt.. anything that could send him back a step. He is tired of being poked and prodded and wants to come home now but Donna said that the hospital has people there to entertain the kids as their immune systems start to improve.
As was mentioned yesterday, Nicholas has been diagnosed with ALL Type precurser-B. A type of leukemia (blood cancer) in which too many B-cell lymphoblasts (immature white blood cells) are found in the blood and bone marrow. It is the most common type of acute lymphoblastic leukemia (ALL). Also called precursor B-lymphoblastic leukemia and B-cell acute lymphocytic leukemia. This type of Leukemia is the most easily and successfully treated form of childhood Leukemia. But will require Nicholas to stay in the hospital for 4-6 weeks mostly to avoid any type of infection. After his in-patient stay, he will be required to make intermittent hopsital stays over the next 3 years and take a large amount of drugs.
It was a fortunate occurance that Donna had brought Nicholas' bruising issue to the attention of his Dr.s this "early" Had they waited a week or so more, Nicholas would have become extremely ill.
As was mentioned yesterday, Nicholas has been diagnosed with ALL Type precurser-B. A type of leukemia (blood cancer) in which too many B-cell lymphoblasts (immature white blood cells) are found in the blood and bone marrow. It is the most common type of acute lymphoblastic leukemia (ALL). Also called precursor B-lymphoblastic leukemia and B-cell acute lymphocytic leukemia. This type of Leukemia is the most easily and successfully treated form of childhood Leukemia. But will require Nicholas to stay in the hospital for 4-6 weeks mostly to avoid any type of infection. After his in-patient stay, he will be required to make intermittent hopsital stays over the next 3 years and take a large amount of drugs.
It was a fortunate occurance that Donna had brought Nicholas' bruising issue to the attention of his Dr.s this "early" Had they waited a week or so more, Nicholas would have become extremely ill.
Wednesday September 17, 2008
Today we found out that Nicholas has Leukemia. It came as a shock to all of us. The day before we had taken him in for routine blood work and by the afternoon we are residents of the Lombardi Comprehensive Cancer Center at Georgetown University Hospital.
Nicholas had undergone some tests because we noticed that he was easily bruising. To all of our surprise, the tests confirmed that Nicholas has Leukemia. Because his platelets were so low it was advised that we take him directly to the hospital to begin more testing. He was immediately taken to Georgetown. We are trying to absorb all of this new information and understand what is ahead of us. Other than being poked and prodded yesterday Nicholas is in a good mood, laughing and playing as if nothing was wrong. Hailey and Zach are in school and are keeping up their normal routine with Rich's parents staying with them at the house.
Nicholas had undergone some tests because we noticed that he was easily bruising. To all of our surprise, the tests confirmed that Nicholas has Leukemia. Because his platelets were so low it was advised that we take him directly to the hospital to begin more testing. He was immediately taken to Georgetown. We are trying to absorb all of this new information and understand what is ahead of us. Other than being poked and prodded yesterday Nicholas is in a good mood, laughing and playing as if nothing was wrong. Hailey and Zach are in school and are keeping up their normal routine with Rich's parents staying with them at the house.
Subscribe to:
Comments (Atom)
