Thank you to all of you who have followed our journey with Nathan and provided the wonderful prayers and support during this difficult trial. This is not the ending that we had envisioned but was evidently part of God's plan. Though we have lost our wonderful son, we certainly are rejoicing in the time that we got with him on this earth. Nathan was a truly unique individual who dared you not to notice him. Please come and join us in a celebration of Nathan's life.
Vigil of Prayer will be held Monday, July 26th, 2010 at 7:00 p.m. at St. Philip Neri Parish (corner of Taylor St and Munroe). Mass of Christian Burial will be held on Tuesday, July 27th, 2010 at 10:30 a.m. also at St. Philip Neri Parish. Rite of Committal will follow at Hillcrest Memorial Gardens (East on 8th Street, turn right before railway crossing) to which anyone who loved Nathan is invited. There will be a tea immediately after the Mass at St Philip Neri and those who do not wish to attend the internment can start to reminisce about Nathan's brilliant but short life while waiting for our family to return.
Sunday, July 25, 2010
Friday, July 23, 2010
Our Angel
Our angel has been called back to heaven today.
He fought to the end but his body just couldn't keep up to his spirit.
He fought to the end but his body just couldn't keep up to his spirit.
Induction Day 25 and a bit
We are moving to ICU. They are just making up the orders now. They will put in a second IV line when we are there to get more stuff into him faster.
Thursday, July 22, 2010
Induction Day 25
Quick blog as both Shelley and I are in the hospital with Nathan.
Dr Ali was in and indicated WBC was about the same with platelets at 38 indicating Nathan is becoming resistant to platelets. They determined to give Nathan double doses of platelets today. It is getting hard with Nathan's poor little IV to get three antibiotics, extra blood products and now albumin (over 4 hours) and something else... the nurses are having a tricky time determining what to go in and if it will interfere with the next item. A double port sure would be handy about now.
Dr Saczek, the pediatric surgeon came and examined Nathan. He thinks the condition is the same as Tuesday. He isn't any worse. He just needs to rest it and wait it out. Very unusual cases would require surgery but with Nathan we need to just wait it out. That was comforting for Shelley. We need some white blood cells to come back and help and that is going slow. Nathan's abdomen is getting more distended and the pain is almost all the way around.
Lauren who is a pediatric doctor said there is no sign of typhlitis and that he has a case of neutopenic colitis. My research is showing that they are one and the same so I'm not sure what to say about that right now. It has us very, very concerned. Nathan is not doing very well. Please continue to pray for us.
Dr Ali was in and indicated WBC was about the same with platelets at 38 indicating Nathan is becoming resistant to platelets. They determined to give Nathan double doses of platelets today. It is getting hard with Nathan's poor little IV to get three antibiotics, extra blood products and now albumin (over 4 hours) and something else... the nurses are having a tricky time determining what to go in and if it will interfere with the next item. A double port sure would be handy about now.
Dr Saczek, the pediatric surgeon came and examined Nathan. He thinks the condition is the same as Tuesday. He isn't any worse. He just needs to rest it and wait it out. Very unusual cases would require surgery but with Nathan we need to just wait it out. That was comforting for Shelley. We need some white blood cells to come back and help and that is going slow. Nathan's abdomen is getting more distended and the pain is almost all the way around.
Lauren who is a pediatric doctor said there is no sign of typhlitis and that he has a case of neutopenic colitis. My research is showing that they are one and the same so I'm not sure what to say about that right now. It has us very, very concerned. Nathan is not doing very well. Please continue to pray for us.
Induction Day 24 1/2
We had a very long and emotional day yesterday and neither Shelley nor I felt much like posting by the end of it.
Let's start with some GREAT news. Carter is a full match for Nathan's bone marrow and so he is an ideal donor! That made Nathan happy, his mom and dad very happy, and Carter happy and scared (which is perfectly fine). Carter is our deep thinker and he was mulling that over all evening and came up with some great questions. He is still more than a little nervous but his comment to Grandma Miller before bed was "I know why I was the perfect match, Nathan always wants to do what I'm doing and now I can help him" We have wonderful kids.
Now we just have to get through this damn setback before we can continue to move forward towards that bone marrow transplant. We have had a ton of doctors through to see Nathan, and Nathan has gone through a battery of tests and each of those more than once. There is more than one theory put forth but no one really knows what is going on. What we know so far...
- Nathan's pain in his abdomen continues and they are having trouble managing it. They had reduced his morphine but have upped it back up again.
- The ultrasounds and CT scans show a thickening in his descending large intestine (colon). This is either an inflammation or infection - they haven't agreed on that and don't know. What they are saying is that he essentially has Colitis right now.
- Nathan now has blood in his urine and stool - not a good sign but consistent with the colitis.
- The x-rays do not show any fluid build up anywhere, so no perforations or holes (good news)
- the are concerned about some heart beats as Nathan's ekg is showing some unusual signs in the delta waves, they are thinking wollf-parkinson-white syndrome. Unsure what that means to us.
- He keeps spiking fevers, yesterday he was 39.8 for quite awhile, the fevers were supposed to go away after the port was removed so this is troublesome.
- the port cultures have not grown anything yet, still time but that is troublesome as well. Did we remove it for no reason? Where is the infection then that the antibiotics are not handling it?
- Nathan still has one pseudomons strain in his blood. Found out yesterday that initially he had two, but now there is only one. That must be progress?
- Nathan is no longer responding well to platelet transfusions. Yesterday the transfusion took him from 22 to 38. It should be (and usually does) taking him over 80. They have to talk to the blood bank about special ones (whatever that means). Sounds like either they have to give him platelets from a single donor, or give him twice as much as what he needs.
- Nathan has started to lose feeling right by his waistband on his left side and now his back is hot and hard. Still consistent with the inflammation but we sure would like to be going the other direction instead of getting worse.
Shelley just phoned to say that they are likely moving Nathan to pediatric ICU. So much for turning the corner....
Let's start with some GREAT news. Carter is a full match for Nathan's bone marrow and so he is an ideal donor! That made Nathan happy, his mom and dad very happy, and Carter happy and scared (which is perfectly fine). Carter is our deep thinker and he was mulling that over all evening and came up with some great questions. He is still more than a little nervous but his comment to Grandma Miller before bed was "I know why I was the perfect match, Nathan always wants to do what I'm doing and now I can help him" We have wonderful kids.
Now we just have to get through this damn setback before we can continue to move forward towards that bone marrow transplant. We have had a ton of doctors through to see Nathan, and Nathan has gone through a battery of tests and each of those more than once. There is more than one theory put forth but no one really knows what is going on. What we know so far...
- Nathan's pain in his abdomen continues and they are having trouble managing it. They had reduced his morphine but have upped it back up again.
- The ultrasounds and CT scans show a thickening in his descending large intestine (colon). This is either an inflammation or infection - they haven't agreed on that and don't know. What they are saying is that he essentially has Colitis right now.
- Nathan now has blood in his urine and stool - not a good sign but consistent with the colitis.
- The x-rays do not show any fluid build up anywhere, so no perforations or holes (good news)
- the are concerned about some heart beats as Nathan's ekg is showing some unusual signs in the delta waves, they are thinking wollf-parkinson-white syndrome. Unsure what that means to us.
- He keeps spiking fevers, yesterday he was 39.8 for quite awhile, the fevers were supposed to go away after the port was removed so this is troublesome.
- the port cultures have not grown anything yet, still time but that is troublesome as well. Did we remove it for no reason? Where is the infection then that the antibiotics are not handling it?
- Nathan still has one pseudomons strain in his blood. Found out yesterday that initially he had two, but now there is only one. That must be progress?
- Nathan is no longer responding well to platelet transfusions. Yesterday the transfusion took him from 22 to 38. It should be (and usually does) taking him over 80. They have to talk to the blood bank about special ones (whatever that means). Sounds like either they have to give him platelets from a single donor, or give him twice as much as what he needs.
- Nathan has started to lose feeling right by his waistband on his left side and now his back is hot and hard. Still consistent with the inflammation but we sure would like to be going the other direction instead of getting worse.
Shelley just phoned to say that they are likely moving Nathan to pediatric ICU. So much for turning the corner....
Tuesday, July 20, 2010
Induction Day 23
A quick update cuz I'm tired.
Nathan had surgery this morning to remove his port. It went well, and while he was still groggy they did an ultrasound in the recovery room so that it wouldn't hurt his very pained left side. He had a fever before the surgery and still had it afterwards. It took about 5 hours for it to finally break at 3pm. The highest I had seen was 39.7 but then I headed back to work. The sent the end of Nathan's port line in for culture to see if anything grew - we hadn't heard anything back by 10pm.
The doctors are still confused on what is going on in Nathan's abdomen and we keep getting different answers - very confounding. First it is caused by pseudomonas, and then it isn't and is likely Typhlitis, then it is again, then it isn't again - each doctor from each area (oncology, resident, infectious disease and internal) seemed to have a different theory - who do you believe?? Nathan then had a CT scan at about 6pm tonight. It showed essentially the same as the ultrasound which is a thickening, or inflammation, in the lower large intestine. The plan, as of this evening anyway, is to continue on the current treatment course and they are going to add a third antibiotic which I forget the name of. Dr Ali called today the nadir and that Nathan would start getting better - we pray that he is right.
Another distressing issue is that they are having trouble with the pain management. The morphine that they were using to control his pain may also be causing issues as that one of the side effects of morphine is to shut down your bowels. That led infectious disease doctors to recommend that Nathan be removed from morphine. When we asked what they recommended to replace it with, they said that was up to Dr Al to figure out - not overly helpful. All they have done so far is to reduce Nathan from up to 5mg every 4 hours down to 2 mg every 6 hours. They may as well remove it entirely because those 2 mg last for about a 1/2 hour and then Nathan is in pain for 5.5 hours. It is very hard to tell your son, who is begging and pleading for pain medicine because it hurts so bad, that he cannot have it for another 5 hours. And this is a tough kid who actually gave blood peripherally and had GCSF injected into his arm today, both without flinching.
The plan to recover now is essentially bowel rest, run the three antibiotics, and give Nathan G-CSF to help the WBCs start coming back up. We have a video conference with Dr Lewis at 1:30 pm tomorrow but our line of questions have certainly be derailed by this latest hurdle. My short post is getting long, so I'll end it here.
Nathan had surgery this morning to remove his port. It went well, and while he was still groggy they did an ultrasound in the recovery room so that it wouldn't hurt his very pained left side. He had a fever before the surgery and still had it afterwards. It took about 5 hours for it to finally break at 3pm. The highest I had seen was 39.7 but then I headed back to work. The sent the end of Nathan's port line in for culture to see if anything grew - we hadn't heard anything back by 10pm.
The doctors are still confused on what is going on in Nathan's abdomen and we keep getting different answers - very confounding. First it is caused by pseudomonas, and then it isn't and is likely Typhlitis, then it is again, then it isn't again - each doctor from each area (oncology, resident, infectious disease and internal) seemed to have a different theory - who do you believe?? Nathan then had a CT scan at about 6pm tonight. It showed essentially the same as the ultrasound which is a thickening, or inflammation, in the lower large intestine. The plan, as of this evening anyway, is to continue on the current treatment course and they are going to add a third antibiotic which I forget the name of. Dr Ali called today the nadir and that Nathan would start getting better - we pray that he is right.
Another distressing issue is that they are having trouble with the pain management. The morphine that they were using to control his pain may also be causing issues as that one of the side effects of morphine is to shut down your bowels. That led infectious disease doctors to recommend that Nathan be removed from morphine. When we asked what they recommended to replace it with, they said that was up to Dr Al to figure out - not overly helpful. All they have done so far is to reduce Nathan from up to 5mg every 4 hours down to 2 mg every 6 hours. They may as well remove it entirely because those 2 mg last for about a 1/2 hour and then Nathan is in pain for 5.5 hours. It is very hard to tell your son, who is begging and pleading for pain medicine because it hurts so bad, that he cannot have it for another 5 hours. And this is a tough kid who actually gave blood peripherally and had GCSF injected into his arm today, both without flinching.
The plan to recover now is essentially bowel rest, run the three antibiotics, and give Nathan G-CSF to help the WBCs start coming back up. We have a video conference with Dr Lewis at 1:30 pm tomorrow but our line of questions have certainly be derailed by this latest hurdle. My short post is getting long, so I'll end it here.
Monday, July 19, 2010
Induction Day 22
well it was a partial day 22 today. Nathan still had his vincristine but they did not give the triple intrathecal therapy for fear of introducing the pseudomonas to his CNS. We know there is a window for him to get this treatment but we don't know how wide that window is yet. Nathan is not even in the room with the window yet so it has to stay open awhile yet.
Nathan is not doing very well today, lots of pain in his "tummy" and no appetite. It is even a big difference from yesterday. They put him on fluids this evening in order to get some nutrients into him as today he has had a cup and a half of soup and half of a juice - not very much for being on steroids for 22 straight days still. Being on a steady dose of morphine he is pretty lethargic, not fully awake often and not up for much when he is. Add to that the steady doses of Tylenol for his fever and it makes for a tired and groggy man. The spark still comes to his eyes occasionally but we sure wish those eyes would stay open longer...
The doctors are still trying to figure out all that is going on with him now. Nathan is showing once again what a tough kid he is as he puts up the consistent stream of new doctors wanted to prod and poke some more. They are convinced that one of the problems is that his port is infected and it will finally be removed about 9am Tuesday. The downside, of course, to having his port removed is that he will now have IV hooked up through his wrist and they want blood drawn daily which will have to come out of a needle in his arm - he won't like that much! It should take up to 48 hours after the port is removed to clear the pseudomonos from him and that should take care of the fevers. He would continue the full course of antibiotics after the port is removed which will be a week to two weeks of the piptaz and tobramycin after the port is removed so we are for awhile yet.
As for the pain in his abdomen, one of the things they are investigating is Typhlitis. The symptoms don't quite match up but they are pretty close. The biggest difference is that Typhlitis shows on the right side and Nathan's pain is on the left, but other than that he has most of the symptoms. It may be nice to know what is wrong, but that is definitely not one of the things that you want. We are praying that it is not this and not all of the doctors agree that might be this. Right now we are waiting to go for an x-ray, we were hoping to do this before Nathan got too tired and wanted to go to bed, that didn't quite work as Nathan is now sleeping in his wheelchair. At least Shelley has had a comfortable spot for awhile as she has taken up residence on Nathan's bed.
We had a great talk with Dr Strueby this evening who is a fourth year resident on the pediatric ward. She patiently answered our questions and since we had a doctor giving us well thought out answers we ran the whole gamut of questions asking about everything that has happened over the last week. Dr Strueby is one of the doctors that is not convinced it is Typhlitis though she won't rule it out. In addtion to the x-ray tonight we will be scheduled for another ultrasound tomorrow and possibly a CT scan as they keep looking for what is causing the problem. If you are confused right now thinking that it was pseudomonos that was causing all the problems then you aren't alone. That is what we were initially led to believe but they no longer think that that is the case.
To switch kids for a bit, Carter went to the first day of his day camp this week and he really enjoyed it. They went kayaking, wall climbing and swimming. When he and Justin came up tonight and he was telling Nathan about his day it seemed to spark Nathan up for a bit. Nathan was tired so we sent the kids (Johnathan and Ella has stopped by too) to the play room for a bit. Nathan slept some more and then wanted to go join them in the playroom. Before we could make that happen he was tired again and needed to rest some more. You could see that he really wanted to go see what the other kids were doing but his body just wouldn't let him.
Well I've typed all this while waiting an hour for x-rays. I sure hope they come soon as I'm running out of stuff that I'm willing to say. The last thing that I do want to say is that Shelley and I, and our boys, are immensely grateful for the continued support from family and friends. We love you all and hope that you will continue to pray for us. Good timing away we go....
Nathan is not doing very well today, lots of pain in his "tummy" and no appetite. It is even a big difference from yesterday. They put him on fluids this evening in order to get some nutrients into him as today he has had a cup and a half of soup and half of a juice - not very much for being on steroids for 22 straight days still. Being on a steady dose of morphine he is pretty lethargic, not fully awake often and not up for much when he is. Add to that the steady doses of Tylenol for his fever and it makes for a tired and groggy man. The spark still comes to his eyes occasionally but we sure wish those eyes would stay open longer...
The doctors are still trying to figure out all that is going on with him now. Nathan is showing once again what a tough kid he is as he puts up the consistent stream of new doctors wanted to prod and poke some more. They are convinced that one of the problems is that his port is infected and it will finally be removed about 9am Tuesday. The downside, of course, to having his port removed is that he will now have IV hooked up through his wrist and they want blood drawn daily which will have to come out of a needle in his arm - he won't like that much! It should take up to 48 hours after the port is removed to clear the pseudomonos from him and that should take care of the fevers. He would continue the full course of antibiotics after the port is removed which will be a week to two weeks of the piptaz and tobramycin after the port is removed so we are for awhile yet.
As for the pain in his abdomen, one of the things they are investigating is Typhlitis. The symptoms don't quite match up but they are pretty close. The biggest difference is that Typhlitis shows on the right side and Nathan's pain is on the left, but other than that he has most of the symptoms. It may be nice to know what is wrong, but that is definitely not one of the things that you want. We are praying that it is not this and not all of the doctors agree that might be this. Right now we are waiting to go for an x-ray, we were hoping to do this before Nathan got too tired and wanted to go to bed, that didn't quite work as Nathan is now sleeping in his wheelchair. At least Shelley has had a comfortable spot for awhile as she has taken up residence on Nathan's bed.
We had a great talk with Dr Strueby this evening who is a fourth year resident on the pediatric ward. She patiently answered our questions and since we had a doctor giving us well thought out answers we ran the whole gamut of questions asking about everything that has happened over the last week. Dr Strueby is one of the doctors that is not convinced it is Typhlitis though she won't rule it out. In addtion to the x-ray tonight we will be scheduled for another ultrasound tomorrow and possibly a CT scan as they keep looking for what is causing the problem. If you are confused right now thinking that it was pseudomonos that was causing all the problems then you aren't alone. That is what we were initially led to believe but they no longer think that that is the case.
To switch kids for a bit, Carter went to the first day of his day camp this week and he really enjoyed it. They went kayaking, wall climbing and swimming. When he and Justin came up tonight and he was telling Nathan about his day it seemed to spark Nathan up for a bit. Nathan was tired so we sent the kids (Johnathan and Ella has stopped by too) to the play room for a bit. Nathan slept some more and then wanted to go join them in the playroom. Before we could make that happen he was tired again and needed to rest some more. You could see that he really wanted to go see what the other kids were doing but his body just wouldn't let him.
Well I've typed all this while waiting an hour for x-rays. I sure hope they come soon as I'm running out of stuff that I'm willing to say. The last thing that I do want to say is that Shelley and I, and our boys, are immensely grateful for the continued support from family and friends. We love you all and hope that you will continue to pray for us. Good timing away we go....
Sunday, July 18, 2010
Induction Day 21
Dr.Williams from Infectious Disease visited us a little while ago to say the blood cultures taken from Nathan are still showing the pseudomonas but the bug is responding to the medications Nathan is receiving when tested outside of Nathan's body. They are convinced that the port and the line that is attached is infected with the pseudomonas. This bug apparently hides very well by attaching to plastic or metal and flattening so that medication does not affect it. Now Nathan will need to have surgery to have the port removed however we aren't sure when this will happen. Since the bug is still in Nathan's blood his spinal treatment tomorrow will be postponed. He is still to receive the vincristine so we are guessing the port will be removed some time after this treatment is done as it is our understanding that chemotherapy can not be delivered to children through an arm vein as they aren't large enough. The other items of uncertainty is whether a new port will be installed or whether he will have to wait and then have surgery again and the type will need to be determined again: (1) port like he has now or (2) a central line external to his body (our understanding is this is the type of line that will be required for the BMT) so discussions need to be had with Dr Ali and Dr Lewis. Dr Williams expects clear results as soon as the port is removed. We are grateful for the care Nathan has recieved and continue to pray that this will clear from his system.
Nathan's hair has started to fall out from the chemo therapy. His shirt was covered this morning, warranting a discussion again about it falling out. Nathan is such a tough little boy but his feelings are very sensitive. He started to cry and when asked why he was upset he indicated he was sad because the kids at school would make fun of him without hair. We assured him that it would grow back like the last time and that his friends would understand. Kids often speak their minds and don't think about feelings and that is why they are kids.
Nathan's hair has started to fall out from the chemo therapy. His shirt was covered this morning, warranting a discussion again about it falling out. Nathan is such a tough little boy but his feelings are very sensitive. He started to cry and when asked why he was upset he indicated he was sad because the kids at school would make fun of him without hair. We assured him that it would grow back like the last time and that his friends would understand. Kids often speak their minds and don't think about feelings and that is why they are kids.
Saturday, July 17, 2010
Induction Day 20
Nathan developed a fever again around 12:30am so blood was drawn for bacteria cultures tests both from his port and his arm before being able to receive tylenol. Around 2am the resident came in to examine him and ordered chest and stomach x-rays. The travelling caravan came to our room shortly before 4am. As we were sliding the slide under Nathan's back his response was "What is going on now?". They were quick and the machine they brought in was very child friendly fully decorated with bears. Nathan was up a lot between this with stomach/side pain and to go to the bathroom. Shortly before 7am a knock on the door woke my short nap to be told it was time to do blood work as we were late. I politley told him Nathan gave enough blood between 12:30 and 1:15am so he left. The fever came back around 10am so with tylenol for the fever and morophine for the pain Nathan is sleeping. He is quite the trooper but one more thing for him to fight was not necessary.
The bacteria in Nathan's blood is called Pseudomonas aeruginosa. From what I have read it is a Gram-negative bacterium that is noted for its environmental versatility, ability to cause disease in particular susceptible individuals, and its resistance to antibiotics. It orginates in the intestine causing infection. Nathan's bowel showed in his ultra sound to have a thickened wall indicating inflamation. The two drugs Nathan is on are used to treat this infection but how long it will take to see results I don't know.
http://en.wikipedia.org/wiki/Pseudomonas_aeruginosa
Please pray for strength for Nathan to fight yet one more bug in his blood and that the medications he is on kills the pseudomonas aeruginosa.
The bacteria in Nathan's blood is called Pseudomonas aeruginosa. From what I have read it is a Gram-negative bacterium that is noted for its environmental versatility, ability to cause disease in particular susceptible individuals, and its resistance to antibiotics. It orginates in the intestine causing infection. Nathan's bowel showed in his ultra sound to have a thickened wall indicating inflamation. The two drugs Nathan is on are used to treat this infection but how long it will take to see results I don't know.
http://en.wikipedia.org/wiki/Pseudomonas_aeruginosa
Please pray for strength for Nathan to fight yet one more bug in his blood and that the medications he is on kills the pseudomonas aeruginosa.
Friday, July 16, 2010
Induction Day 19
The last few days have been eventful and we are praying for a peaceful, healing weekend.
Thursday -
The tole of the intense treatment Nathan received at the start of the month is showing on Nathan. His hemoglobin and platelets dropped again resulting in the doctors putting in a request for a red cell transfusion. This was ordered to drip over 4 hours and half way through, Nathan developed a nose bleed. Amazingly enough, with 3 boys and husband we've have never had to deal with nose bleeds before and this was a doozy. I took a cold cloth to his nose, slightly tipped his head back trying to stop it and then when it wasn't looking like it was going to stop, I went to get the nurse. She came in, took a look and went to find a doctor. Not really knowing what I should be doing to get this thing to stop, it really unnerved me to have two nurses and a doctor standing in the background - watching. Not offering to help. Not providing suggestions. Thankfully my sister walked in, with lunch, and she came to my aid. Yes, 2 chartered accountants trying to get a nose bleed to stop while the medical profession stood in the background critiquing us or taking notes depending on how you want to look at it or they simply left the room depending on the moment. It was when Nathan said he had to spit that it took Lorrie and I by surprise as he was spitting up clots. At one point, Lorrie held the dish, I the cloth and I needed a new one. That request cleared the room so Lorrie took over so I could get clean cloths. After 20 mins of this I requested a call be made to Nathans oncologist to determine whether platelets should be ordered. By the time the platelets arrived it had been roughly 40 mins since the nose bleed had started and after several positions with Nathan's head and a small ice pack (1st ice pack came the size of a 8*11 pan not sure how that was going to fit on his nose), it finally stopped. Nathan was upset to see the blood and spitting it out, and at one point when the room was full his comment was "I need my Dad. He would know what to do." They stopped dripping the red cells in order for the platelets to be transfused. This worked.
At 3:30pm we met with Dr Wright the radiologist who will be looking after Nathan. His radiation will only begin once remission is determined in the bone marrow and CNS and WBC are a minimum of 1.0. So when this will be time will tell.
By the end of the day, Nathan was in good spirits. The Baum boys came for a visit and a game of cards. Auntie Lisa and Auntie Wendy came before supper. Then G&G McLeod came with Justin and Carter shortly after supper. A cardiologist resident put on a magic show for the kids in the playroom and Nathan assisted a couple times. All the boys enjoyed this.
During this time a Doctor from Infectious Disease came to discuss the bug found in Nathan's blood - pseudomonos - a bug from the intestinal tract that, when is presented the opportunity i.e. no neutrophils, moves into the blood stream. They tested the bug in a petri dish to determine which penicilins would kill the bug so Nathan is being treated with Piptaz and Tobramycin.
I left Nathan in a good mood, without fever for several hours, so thought he and Arron would have a good night.
Friday -
Last night was not a good night. Nathan started to get a sore side in the evening and by midnight he was often in quite a bit of pain. He would even cry out in his sleep and the pain awakened him every 40 mins or so. By about 5am, the nurse finally called in a resident to check out Nathan, and she was really confused as the pain wasn't near any organs. An hour later, the head pediatric resident came in to check and she was a little bewildered as well. They updated Dr Ali but didn't come up with much. After our teleconference with Dr Lewis (more on that later), Dr Mpofu came up to check out Nathan. He ordered another urine sample and an ultrasound. We went down for the ultrasound during which Nathan was falling asleep from his lack of sleep the night before and the morophine given for pain. The ultrasound showed a thickening of his intestine and some swelling there and that is what they are guessing is causing the pain. They think that now that is the site of the infection and they aren't going to change the antibiotics he is getting as they should handle it fine. They are now giving him morphine to help cope with the pain and Nathan has had a lot of pain. He is a tough kid so when he is crying and writhing in pain you know it must hurt.
Mike Babcock, coach of the Detroit Red Wings and Canada's Olympic team, showed up in the playroom at 3pm to visit with the kids. He was awesome with them and has a great family that were also very good with the kids. Justin, Carter and Nathan soaked up the attention they got and were excited about the hats and mini-sticks they received. It was a nice break for Nathan but not even before it was over he wanted to head back to his room because his tummy hurt. He managed to tough it out enough to go back to the playroom to register his new Webkinz that his auntie bought him. You can fight through the pain for some computer time as it is often hard to get the computer free. Nathan had a nap through supper and woke up in a good mood. He had an appetite and wanted to play cards. And then a movie of course.
One unfortunate mishap today is someone decided the bag of ham sandwiches i had made for Nathan and was keeping in the community fridge and were clearly labeled went missing from the fridge. It amazes me that people will do that in this setting. Since we are looking at a lot more hospital stays, I think its time to invest in an electric cooler. On a positive note, Arron was impressed when he saw one mom with an electric skillet making eggs and bacon for her son in the kitchen. You do anything to keep your child eating when they are hungry.
Thursday -
The tole of the intense treatment Nathan received at the start of the month is showing on Nathan. His hemoglobin and platelets dropped again resulting in the doctors putting in a request for a red cell transfusion. This was ordered to drip over 4 hours and half way through, Nathan developed a nose bleed. Amazingly enough, with 3 boys and husband we've have never had to deal with nose bleeds before and this was a doozy. I took a cold cloth to his nose, slightly tipped his head back trying to stop it and then when it wasn't looking like it was going to stop, I went to get the nurse. She came in, took a look and went to find a doctor. Not really knowing what I should be doing to get this thing to stop, it really unnerved me to have two nurses and a doctor standing in the background - watching. Not offering to help. Not providing suggestions. Thankfully my sister walked in, with lunch, and she came to my aid. Yes, 2 chartered accountants trying to get a nose bleed to stop while the medical profession stood in the background critiquing us or taking notes depending on how you want to look at it or they simply left the room depending on the moment. It was when Nathan said he had to spit that it took Lorrie and I by surprise as he was spitting up clots. At one point, Lorrie held the dish, I the cloth and I needed a new one. That request cleared the room so Lorrie took over so I could get clean cloths. After 20 mins of this I requested a call be made to Nathans oncologist to determine whether platelets should be ordered. By the time the platelets arrived it had been roughly 40 mins since the nose bleed had started and after several positions with Nathan's head and a small ice pack (1st ice pack came the size of a 8*11 pan not sure how that was going to fit on his nose), it finally stopped. Nathan was upset to see the blood and spitting it out, and at one point when the room was full his comment was "I need my Dad. He would know what to do." They stopped dripping the red cells in order for the platelets to be transfused. This worked.
At 3:30pm we met with Dr Wright the radiologist who will be looking after Nathan. His radiation will only begin once remission is determined in the bone marrow and CNS and WBC are a minimum of 1.0. So when this will be time will tell.
By the end of the day, Nathan was in good spirits. The Baum boys came for a visit and a game of cards. Auntie Lisa and Auntie Wendy came before supper. Then G&G McLeod came with Justin and Carter shortly after supper. A cardiologist resident put on a magic show for the kids in the playroom and Nathan assisted a couple times. All the boys enjoyed this.
During this time a Doctor from Infectious Disease came to discuss the bug found in Nathan's blood - pseudomonos - a bug from the intestinal tract that, when is presented the opportunity i.e. no neutrophils, moves into the blood stream. They tested the bug in a petri dish to determine which penicilins would kill the bug so Nathan is being treated with Piptaz and Tobramycin.
I left Nathan in a good mood, without fever for several hours, so thought he and Arron would have a good night.
Friday -
Last night was not a good night. Nathan started to get a sore side in the evening and by midnight he was often in quite a bit of pain. He would even cry out in his sleep and the pain awakened him every 40 mins or so. By about 5am, the nurse finally called in a resident to check out Nathan, and she was really confused as the pain wasn't near any organs. An hour later, the head pediatric resident came in to check and she was a little bewildered as well. They updated Dr Ali but didn't come up with much. After our teleconference with Dr Lewis (more on that later), Dr Mpofu came up to check out Nathan. He ordered another urine sample and an ultrasound. We went down for the ultrasound during which Nathan was falling asleep from his lack of sleep the night before and the morophine given for pain. The ultrasound showed a thickening of his intestine and some swelling there and that is what they are guessing is causing the pain. They think that now that is the site of the infection and they aren't going to change the antibiotics he is getting as they should handle it fine. They are now giving him morphine to help cope with the pain and Nathan has had a lot of pain. He is a tough kid so when he is crying and writhing in pain you know it must hurt.
Mike Babcock, coach of the Detroit Red Wings and Canada's Olympic team, showed up in the playroom at 3pm to visit with the kids. He was awesome with them and has a great family that were also very good with the kids. Justin, Carter and Nathan soaked up the attention they got and were excited about the hats and mini-sticks they received. It was a nice break for Nathan but not even before it was over he wanted to head back to his room because his tummy hurt. He managed to tough it out enough to go back to the playroom to register his new Webkinz that his auntie bought him. You can fight through the pain for some computer time as it is often hard to get the computer free. Nathan had a nap through supper and woke up in a good mood. He had an appetite and wanted to play cards. And then a movie of course.
One unfortunate mishap today is someone decided the bag of ham sandwiches i had made for Nathan and was keeping in the community fridge and were clearly labeled went missing from the fridge. It amazes me that people will do that in this setting. Since we are looking at a lot more hospital stays, I think its time to invest in an electric cooler. On a positive note, Arron was impressed when he saw one mom with an electric skillet making eggs and bacon for her son in the kitchen. You do anything to keep your child eating when they are hungry.
Wednesday, July 14, 2010
Induction Day 17
Shelley has been spending the most time with Nathan so she has the most knowledge to post but... she has been spending a lot of time with Nathan and has had no time to post. Shelley slept (I use that term loosely) at the hospital last night and will again tonight. Tomorrow will be my night.
Nathan has been getting fevers pretty steady and this time, for the first time, his blood culture came back positive. He does have a bug we just don't know if it is a good thing or bad thing yet... it's good that we know what is causing and aren't guessing like every other time, but can we control it? That we don't know yet. Nathan's coutns are pretty much at zero. Neutrophils were 0.00, WBC was .31 and platelets were down to 17. They gave Nathan plasma and platelets today as he did have leg needles this afternoon. Nathan absolutely rocked the needles today, did them together and didn't show any pain - what a tough little man.
Tomorrow we meet with the radiation doctor to determine when Nathan will start his radiation treatment on his testes. Friday morning we finally get to talk with Dr Lewis - we better have some good questions prepared so that all of our pestering is worth while!
I talked with Carter and Justin tonight and they are having a good time at G&G Mcleods. Please continue to pray for our family.
Nathan has been getting fevers pretty steady and this time, for the first time, his blood culture came back positive. He does have a bug we just don't know if it is a good thing or bad thing yet... it's good that we know what is causing and aren't guessing like every other time, but can we control it? That we don't know yet. Nathan's coutns are pretty much at zero. Neutrophils were 0.00, WBC was .31 and platelets were down to 17. They gave Nathan plasma and platelets today as he did have leg needles this afternoon. Nathan absolutely rocked the needles today, did them together and didn't show any pain - what a tough little man.
Tomorrow we meet with the radiation doctor to determine when Nathan will start his radiation treatment on his testes. Friday morning we finally get to talk with Dr Lewis - we better have some good questions prepared so that all of our pestering is worth while!
I talked with Carter and Justin tonight and they are having a good time at G&G Mcleods. Please continue to pray for our family.
Tuesday, July 13, 2010
Induction Day 16
Back in the hospital we go. Nathan complained a few times that his heart hurt today, and then by about 7pm he developed a fever. We lined things up, stopped for McDonalds on the way to the hospital and were admitted by 9pm. Nathan has had an x-ray and electrocardiogram already, he actually fell asleep while they were doing the electrocardiogram about 11pm.
Thankfully we had nurse Adam tonight as he is good at accessing Nathan's port. We had no issues with that. Adam then told us Nathan would be started on Taz which is the big gun antibiotic. And usually means a 14 day stay for us :-(
We'll find out more tomorrow.
Thankfully we had nurse Adam tonight as he is good at accessing Nathan's port. We had no issues with that. Adam then told us Nathan would be started on Taz which is the big gun antibiotic. And usually means a 14 day stay for us :-(
We'll find out more tomorrow.
Monday, July 12, 2010
Induction Day 15
Its been a long day so am going to do it by the numbers of our day:
5:10 am - the time Nathan wanted to get up for the day (steroids causes sleeplessness)
6:30 am - the time my alarm went off and Nathan came into our bedroom, dressed for the day, with emla cream in hand asking "is this the right one"
8:15 am - 7 - the number of dishes I packed for Nathan's "breakfast, snack and lunch" to be had at the clinic - (1) cereal and milk in a thermos, (2) chicken noodle soup (3) pizza (4) cheese noodles with steak (5) pear (6) carrots and brocoli with ranch dip (7) cookies (and yes, he ate it all!)
10:30 am - the time the platelet transfusion started
10:45 am - anistheisiologist was 45 mins late for Nathan's spinal treatment - torture for a child on steroids who can't eat until after his "sleep". By this time Nathan has asked at least 50 times if he could eat yet and when told no, 50 responses of "you are so mean!" Yes I am because I love him.
11:15 am - the time Nathan was able to eat by
12:45 pm - the time the red blood cell transfusion started (To everyone who donates blood on a regular basis, thank you - you saved our son again.)
1:30 pm - the time Nathan decided he needed a nap so had one
4:23 pm - the time Nathan's day ended at the clinic (8 hours later)
4:52 pm - the time we stopped for Blizzards as Nathan just had to have one (he ate his before supper, we saved ours for after supper - needless to say I didn't get to eat mine - Nathan had it)
0.01 - the number of neutrophils (infection fighting cells) in Nathan's body which means chemo is working in wiping out the White Blood Cells but risk of fever and infection
3 - was the number of times we took his temperature today
25 or so - the number of times Nathan said "Mom - I need you!"
25 or so - the number of times he said he loved me.
15 or so - the number of times I cried today.
100 or so - the number of times I prayed today.
5:10 am - the time Nathan wanted to get up for the day (steroids causes sleeplessness)
6:30 am - the time my alarm went off and Nathan came into our bedroom, dressed for the day, with emla cream in hand asking "is this the right one"
8:15 am - 7 - the number of dishes I packed for Nathan's "breakfast, snack and lunch" to be had at the clinic - (1) cereal and milk in a thermos, (2) chicken noodle soup (3) pizza (4) cheese noodles with steak (5) pear (6) carrots and brocoli with ranch dip (7) cookies (and yes, he ate it all!)
10:30 am - the time the platelet transfusion started
10:45 am - anistheisiologist was 45 mins late for Nathan's spinal treatment - torture for a child on steroids who can't eat until after his "sleep". By this time Nathan has asked at least 50 times if he could eat yet and when told no, 50 responses of "you are so mean!" Yes I am because I love him.
11:15 am - the time Nathan was able to eat by
12:45 pm - the time the red blood cell transfusion started (To everyone who donates blood on a regular basis, thank you - you saved our son again.)
1:30 pm - the time Nathan decided he needed a nap so had one
4:23 pm - the time Nathan's day ended at the clinic (8 hours later)
4:52 pm - the time we stopped for Blizzards as Nathan just had to have one (he ate his before supper, we saved ours for after supper - needless to say I didn't get to eat mine - Nathan had it)
0.01 - the number of neutrophils (infection fighting cells) in Nathan's body which means chemo is working in wiping out the White Blood Cells but risk of fever and infection
3 - was the number of times we took his temperature today
25 or so - the number of times Nathan said "Mom - I need you!"
25 or so - the number of times he said he loved me.
15 or so - the number of times I cried today.
100 or so - the number of times I prayed today.
Sunday, July 11, 2010
Induction Day 14
A lot of stuff happens in a few days but we still don't know as much as we'd like. Friday we went into the clinic for platelets and leg needles and Nathan did wonderfully well. He has started to put on his own Emla cream, and take it off when we get there. He breezed through the leg needles again Friday so at least there is a positive there. They informed us that we'd have a video conference with Dr Lewis on the 21st of July. That was still two weeks away! We wanted, and still want, more information before then as we are being asked to make major decisions based on little to no information and that is not sitting well with us. Hopefully they'll get something else arranged before we end up just driving down there and demanding to meet.
On Saturday I ventured back up to Carrot River where friends and family put on a benefit for Nathan and our family. They had wonderful weather, a great golf course with 112 golfers participating, a delicious supper with awesome entertainment. All those superlatives aren't enough to describe the people though -everyone there was just simply beyond words. From my family and friends who set up both the farm yard and various golfing events, to all the people that donated items or their time, to the people who worked the benefit and finally to the people stepping up at the auction - the response was overwhelming. The band was great and the party was in full swing when I left. You all know that you played a big part and please know the heartfelt gratitude going from our family to all of yours. Incredible!
While I was in Carrot River golfing Shelley tried to have a "normal day" with the boys. They did a kid project at Home Depot, some crafts from Michaels and picked up some food to have a picnic in the park. Nathan was feeling well so had to use the opportunity while it was present. A good afternoon was had and they had a movie night in the evening. Shelley said it was a great day. On Sunday we got home early in the afternoon and I set up the pool for the boys on the front lawn. They had a blast in it. Nathan tends to overdo it a bit, so it is a real balancing act for Shelley and I to get him to stop something while he is still good vs waiting for the lower energy and poor feeling he gets when he gets too far into an activity. This evening he had to have a rest but it wasn't very long before he was wondering what his brothers were doing and was back outside taking part in some badminton.
Tomorrow is a longer day at the clinic. Nathan will be getting his triple intrathecal therapy, leg needles, and vincristine. Oh did I mention we are onto drug number 13 now? He is now having Nyastatin to help with sores in his mouth once again. We continue to pray that Nathan's body will handle the treatments, that one of us is a match and that we will have a sense of direction soon.
On Saturday I ventured back up to Carrot River where friends and family put on a benefit for Nathan and our family. They had wonderful weather, a great golf course with 112 golfers participating, a delicious supper with awesome entertainment. All those superlatives aren't enough to describe the people though -everyone there was just simply beyond words. From my family and friends who set up both the farm yard and various golfing events, to all the people that donated items or their time, to the people who worked the benefit and finally to the people stepping up at the auction - the response was overwhelming. The band was great and the party was in full swing when I left. You all know that you played a big part and please know the heartfelt gratitude going from our family to all of yours. Incredible!
While I was in Carrot River golfing Shelley tried to have a "normal day" with the boys. They did a kid project at Home Depot, some crafts from Michaels and picked up some food to have a picnic in the park. Nathan was feeling well so had to use the opportunity while it was present. A good afternoon was had and they had a movie night in the evening. Shelley said it was a great day. On Sunday we got home early in the afternoon and I set up the pool for the boys on the front lawn. They had a blast in it. Nathan tends to overdo it a bit, so it is a real balancing act for Shelley and I to get him to stop something while he is still good vs waiting for the lower energy and poor feeling he gets when he gets too far into an activity. This evening he had to have a rest but it wasn't very long before he was wondering what his brothers were doing and was back outside taking part in some badminton.
Tomorrow is a longer day at the clinic. Nathan will be getting his triple intrathecal therapy, leg needles, and vincristine. Oh did I mention we are onto drug number 13 now? He is now having Nyastatin to help with sores in his mouth once again. We continue to pray that Nathan's body will handle the treatments, that one of us is a match and that we will have a sense of direction soon.
Wednesday, July 7, 2010
Induction Day 10
If bad news comes in threes then we just got our third one out of the way.
The biopsy results on Nathan's testicle came back positive - there were leukemic cells present inside his testes. We were hoping that the torsion of the appendix epidydimus was the sole cause of his swelling and discomfort, but unfortunately that was not it. We are not completely sure how this affects everything yet, other than now we know that Nathan will require radiation therapy to his testes. Dr Ali was not certain if it would be after induction or sometime in the next few weeks. I know we have to keep rolling with it, but it sure would be nice if there were answers to all these questions - this is getting more and more frustrating.
Other than that we had a very interesting morning. Nathan decided that he was NOT going for more leg needles today and Shelley could not convince him to get moving and allow her to put the Emla cream on his legs. They phoned me, and though Nathan knew that he needed the treatments, and he agreed that he had to get them, he still wasn't going.... While we were talking this through with him, he took the Emla cream and put it on his own thighs and covered it up with an opsite covering. He then proceeded to put the cream over his port, bandaged that up and was ready to go. Kind of surprised Shelley and I, but Nathan is all about control. He wants to feel like he has some control over what is happening to his body and who can fault that. Shelley and Nathan met me at the Cancer center a little after our 8:30 appointment, as it was closer to 9 they were waiting for us, and we went right into the first room. We discussed how he was going to get the leg needles, and we assured him that nurse Andrea was way better than the ped nurses and he finally agreed to get going. We did his left leg first,(with him taking off the opsite covering and removing the cream) and it hurt a bit but he breathed through it and kept control. When we moved over to the right leg, he was busy making funny faces at his mother pretending that it hurt (or really pretending that it did not) and that one was a piece of cake. He was also very agreeable at getting his port accessed - even his counting was to a small number and darn quick. He even was helpful when Dr Ali did a checkup on him and did everything as asked when asked - which is a little unusual. Did we mention yet that his temperament seems to be a lot better on the Prednisone steroid than it was on the Dexamethasone.
He was given fresh frozen plasma that takes a couple hours so he and his mother had a pretty good morning, at least playing and behaving wise. Shelley and I did take this latest news hard at first, and it is still tough to understand why we keep getting more piled onto an overflowing plate but with the support and love from family and friends I'm sure we will get through this one too. (took awhile to get my positive attitude going on this one today but I think I've got it there.)
Nathan has nothing on Thursday but he will get platelets before his leg needles on Friday morning. We are still hopeful that we will finally get to talk to Dr Lewis from Calgary before too long. It is starting to feel like Nathan's treatment isn't as urgent/important as it once was to the medical staff and that is starting to get to us.
The biopsy results on Nathan's testicle came back positive - there were leukemic cells present inside his testes. We were hoping that the torsion of the appendix epidydimus was the sole cause of his swelling and discomfort, but unfortunately that was not it. We are not completely sure how this affects everything yet, other than now we know that Nathan will require radiation therapy to his testes. Dr Ali was not certain if it would be after induction or sometime in the next few weeks. I know we have to keep rolling with it, but it sure would be nice if there were answers to all these questions - this is getting more and more frustrating.
Other than that we had a very interesting morning. Nathan decided that he was NOT going for more leg needles today and Shelley could not convince him to get moving and allow her to put the Emla cream on his legs. They phoned me, and though Nathan knew that he needed the treatments, and he agreed that he had to get them, he still wasn't going.... While we were talking this through with him, he took the Emla cream and put it on his own thighs and covered it up with an opsite covering. He then proceeded to put the cream over his port, bandaged that up and was ready to go. Kind of surprised Shelley and I, but Nathan is all about control. He wants to feel like he has some control over what is happening to his body and who can fault that. Shelley and Nathan met me at the Cancer center a little after our 8:30 appointment, as it was closer to 9 they were waiting for us, and we went right into the first room. We discussed how he was going to get the leg needles, and we assured him that nurse Andrea was way better than the ped nurses and he finally agreed to get going. We did his left leg first,(with him taking off the opsite covering and removing the cream) and it hurt a bit but he breathed through it and kept control. When we moved over to the right leg, he was busy making funny faces at his mother pretending that it hurt (or really pretending that it did not) and that one was a piece of cake. He was also very agreeable at getting his port accessed - even his counting was to a small number and darn quick. He even was helpful when Dr Ali did a checkup on him and did everything as asked when asked - which is a little unusual. Did we mention yet that his temperament seems to be a lot better on the Prednisone steroid than it was on the Dexamethasone.
He was given fresh frozen plasma that takes a couple hours so he and his mother had a pretty good morning, at least playing and behaving wise. Shelley and I did take this latest news hard at first, and it is still tough to understand why we keep getting more piled onto an overflowing plate but with the support and love from family and friends I'm sure we will get through this one too. (took awhile to get my positive attitude going on this one today but I think I've got it there.)
Nathan has nothing on Thursday but he will get platelets before his leg needles on Friday morning. We are still hopeful that we will finally get to talk to Dr Lewis from Calgary before too long. It is starting to feel like Nathan's treatment isn't as urgent/important as it once was to the medical staff and that is starting to get to us.
Monday, July 5, 2010
Induction Day 8
Today has been a long day... the entire family was at the clinic for 9am as Nathan was scheduled to have a spinal treatment today. With his platelets all over the board, we asked whether they would proceed or wait for blood work to come back. His platelets were 43 on Saturday and the magic number we were told is 50. So on the assumption that they would reduce further, we waited for blood work to come back switching Nathan's treatment time with another child's. It was a good thing we waited as his platelets came in at 19! Needless to say Nathan received another platelet transfusion today. He received extra sleepy medication today in order to have the leg needles given to him while he was sleeping. He felt horrible today and had a headache right after the treatment, an indication he sat up too soon after having it. Although nauseated and tired, he managed to sleep this afternoon putting him in a really good mood for the evening. Nathan will have a triple intrathecal treatment every Monday during this phase.
The boys were great at the clinic today. Nathan walked in talking over his shoulder to his brothers: "follow me boys", since this was his domain. They enjoyed the Starlite system together and then when asked to go in to get the topical cream on their arms for the HLA testing they did great. Carter was anxious as he was thinking more about the needle and Justin was relaxed as he didn't understand. Arron went first followed by Carter and Justin putting me last. The needles the clinic uses to draw blood are a lot shorter than when you go for blood work. The nurses had to fill 2 tubes - somewhere between 8-10mls- each. Carter seemed to flow slowly so actually needed two pokes to complete his blood work but he did really well and the nurses were great at providing distractions for them. Justin was great, and teased Carter at the end that he did better than him but they both did wonderful. Since I was last the boys wanted to go out to play the Wii rather than wait and I was grateful as I hate needles :). It didn't hurt but by that point my anxiety levels were high and I was grateful for a few minutes to let the tears fall. Now we wait and pray that one of us is a match.
Nathan's white blood cells were at 0.58 today and neutrophils of 0.18. He will have leg needles and fresh frozen plasma on Wed and leg needles on Friday, so hopefully his counts will stabilize and only the good ones will come back. We also pray for no fever.
The boys were great at the clinic today. Nathan walked in talking over his shoulder to his brothers: "follow me boys", since this was his domain. They enjoyed the Starlite system together and then when asked to go in to get the topical cream on their arms for the HLA testing they did great. Carter was anxious as he was thinking more about the needle and Justin was relaxed as he didn't understand. Arron went first followed by Carter and Justin putting me last. The needles the clinic uses to draw blood are a lot shorter than when you go for blood work. The nurses had to fill 2 tubes - somewhere between 8-10mls- each. Carter seemed to flow slowly so actually needed two pokes to complete his blood work but he did really well and the nurses were great at providing distractions for them. Justin was great, and teased Carter at the end that he did better than him but they both did wonderful. Since I was last the boys wanted to go out to play the Wii rather than wait and I was grateful as I hate needles :). It didn't hurt but by that point my anxiety levels were high and I was grateful for a few minutes to let the tears fall. Now we wait and pray that one of us is a match.
Nathan's white blood cells were at 0.58 today and neutrophils of 0.18. He will have leg needles and fresh frozen plasma on Wed and leg needles on Friday, so hopefully his counts will stabilize and only the good ones will come back. We also pray for no fever.
Saturday, July 3, 2010
Induction Day 4
We are amazed at Nathan's ability to handle his treatment physically. The last time Nathan went through these treatments, particularly with the ARA-C, it really beat him up. This time he is fighting back very hard! Other than a little black under the eyes, and occasionally acting tired, he has been handling it well. His counts are low, so his energy levels should be low as well, but he constantly has to be on the go. I think part of it is, that if he slows down, he crashes ... kind of like that movie Crank, where the guy has to keep his adrenaline flowing to stay alive.
The other side, of course, is that this is starting to take its toll on him mentally again. We had the first set of leg needles yesterday and that started to bring out the recalcitrant patient. The first one didn't get so well, but Nathan did very good on the second needle. He then explained it afterwards that his right leg is tougher than his left - and he might be correct as he always handles the right leg better than the left... hmmm. It is getting tougher to convince him once again that he needs the treatment.
Having been in the hospital all week, and leaving during the afternoons, we haven't had a chance to talk with Dr Ali about Nathan's treatment plan. When we were finally able to talk to Dr Mpofu yesterday, there is still some confusion as to how we are proceeding because of not starting everything on Monday. Dr Ali wanted to get treatment days back to Monday, Dr Mpofu wanted them to stay on Tuesday. I ended up talking to the people at the Cancer center four times yesterday to simply get back to, "come in on Monday morning". Sometimes I find it ironic that they keep on telling us to Expect the Unexpected and that we simply have to deal with it, but that same Unexpected seems to through them for a spin as well.
They are trying to move up Nathan's treatments today so that we can be released tonight and not have to spend another night in the hospital tonight. It would mean coming home very late but that would be a very good thing as it is tough to sleep in the hospital.
Lastly, Nathan really misses his brothers - I sure hope his actions show that when they return.
The other side, of course, is that this is starting to take its toll on him mentally again. We had the first set of leg needles yesterday and that started to bring out the recalcitrant patient. The first one didn't get so well, but Nathan did very good on the second needle. He then explained it afterwards that his right leg is tougher than his left - and he might be correct as he always handles the right leg better than the left... hmmm. It is getting tougher to convince him once again that he needs the treatment.
Having been in the hospital all week, and leaving during the afternoons, we haven't had a chance to talk with Dr Ali about Nathan's treatment plan. When we were finally able to talk to Dr Mpofu yesterday, there is still some confusion as to how we are proceeding because of not starting everything on Monday. Dr Ali wanted to get treatment days back to Monday, Dr Mpofu wanted them to stay on Tuesday. I ended up talking to the people at the Cancer center four times yesterday to simply get back to, "come in on Monday morning". Sometimes I find it ironic that they keep on telling us to Expect the Unexpected and that we simply have to deal with it, but that same Unexpected seems to through them for a spin as well.
They are trying to move up Nathan's treatments today so that we can be released tonight and not have to spend another night in the hospital tonight. It would mean coming home very late but that would be a very good thing as it is tough to sleep in the hospital.
Lastly, Nathan really misses his brothers - I sure hope his actions show that when they return.
Thursday, July 1, 2010
Induction Day 3
It was really strange coming home to an empty house - Arron's at the hospital tongiht with Nathan, and Carter and Justin are camping with Grandpa and Grandma Miller. Usually its a welcomed break but not so much given the circumstances.
Last night was a sleepless night - Nathan up to pee every hour from the IV and me, well, I am kind of like the princess and the pea. Without the comfort of my bed combined with the nurses coming into the room often, I couldn't sleep. Nathan's blood work came back today showing no blast cells, so that was a good start to our day. To me this means the chemo is working on clearing the blasts out of the blood and Nathan is responding. Neutraphils dropped today and platelets slid a little further.
We were able to get another day pass so both Nathan and I napped at home. He wanted to fly a kite but there wasn't much wind so settled on trying to learn volleyball. We had supper with my brother and family, watched the Rider game and then went back to the hospital with Nathan.
Nathan starts the leg needles again tomorrow, so since platelets were low, they have decided to give him platelets around 1am. He has been handling the treatments well with no nausea so are grateful for that. He is really missing his brothers and is looking forward to being home when they come home. Just two more days of this treatment.
Last night was a sleepless night - Nathan up to pee every hour from the IV and me, well, I am kind of like the princess and the pea. Without the comfort of my bed combined with the nurses coming into the room often, I couldn't sleep. Nathan's blood work came back today showing no blast cells, so that was a good start to our day. To me this means the chemo is working on clearing the blasts out of the blood and Nathan is responding. Neutraphils dropped today and platelets slid a little further.
We were able to get another day pass so both Nathan and I napped at home. He wanted to fly a kite but there wasn't much wind so settled on trying to learn volleyball. We had supper with my brother and family, watched the Rider game and then went back to the hospital with Nathan.
Nathan starts the leg needles again tomorrow, so since platelets were low, they have decided to give him platelets around 1am. He has been handling the treatments well with no nausea so are grateful for that. He is really missing his brothers and is looking forward to being home when they come home. Just two more days of this treatment.
Subscribe to:
Posts (Atom)