| Updates |
 | |  | |  | |  | |  | |  | |  | |  |
October 15, 2009
Well, my daily updates have not gone as planned!! Jacob was admitted last Wednesday for the start of the chemo protocol for the
transplant. He started hydration on Wednesday, with a bunch of other meds before the start of heavy chemo thursday...Jacob's protocol
called for 5 days of chemotherapy some days lasting 7 hours. All started well and the first couple days Jacob handled the chemo well,
but come Saturday when the Thymoglobulin was added all went downhill. After the first couple hours Jacob started to get nauseated,
they added another drug to control the nausea and he started to have trouble breathing and started coughing...the nurse called for help
right away, and the infusion was paused. Jacob was already on a monitor and his heart rate starts to sky rocket, they immediately infuse
more benadryl and steroids to stop the reaction and continue to listen to his chest, at this point Jake is really coughing and is complaining
that his throat hurts and feels funny...he also develops a high fever all signs of an allergic reaction to the chemo. It takes a couple hours
for his symptoms to get under control and the drugs to combat the reaction. There is still some chemo left to infuse, and they start again
around 6pm, it seems to go well until just after the infusion is complete and Jacob starts to complain he feels sick again and his throat
hurts, after a couple minutes his entire body starts to shake and he gets another high fever...more meds are administered, but Jacob starts
to vomit around 1am...he is very uncomfortable all night, and we still have two more days of the same chemo....
Both Sunday and Monday they add high dose steroids before the infusions and this seems to stop the allergic reaction he had the
previous day...but both Mike and I are on edge the entire time...Jacob is also put on two strong antibiotics due to the fever. Jacob
wakes up Tuesday very irritable and tired and we have to leave the room for 3 hours so they can scrub the room down before Jacob has
the transplant, he falls asleep for almost the entire time. We are brought back into the room around 12:30pm and Jacob has to have a
bath in antibacterial soap before going onto the bed (he has to be bathed in the soap every day in isolation), both Mike and I have to
scrub our hands and wear gowns to enter the room now and Jacob is placed on strict isolation. Jacob is pre-medicated at 2:30pm, and
the transplant is under way at 3pm, Jacob is put back on the monitor for the transplant to monitor his heart rate and oxygen level. Jake
received three bags of stem cells, but his heart rate goes down to 51 beats/min and his blood pressure goes up to 148/96 and he has to
be given an emergency drug to bring his blood pressure down (all of this is a side affect of the preservative in the stem cells), he also has
blood in his urine and his IV is turned up to double his normal limit to flush the bladder.
Over night Jacob has to remain on the monitor due to his low heart beat and his has to be given another dose of the emergency
medication for his blood pressure as it is still dangerously high, they manage to stop the blood in the urine with more fluids and Jacob
starts the second day of transplant on Wednesday when he has to receive another two units of stem cells, his blood pressure goes up
again and for the third and hopefully final time he has to be given the drugs to bring it down...his heart rate stays a little more stable at 60,
and he is able to take the monitor off last night around 8pm......he gets blood in his urine again after the transplant and remains on a high
rate of infusion to flush out the bladder, which does the trick. He has another bad night and is up most of the night with nausea..he is
given two different drugs to combat the nausea both of which only make him slightly comfortable.
To our dismay Jacob just spiked a fever (his immune system is already almost down to nothing), he has to have two blood cultures taken
from his central line and also has to have his nose swabbed, and a peripheral poke done to check for a blood infection....he is not feeling
well today. They already have him on broad spectrum antibiotics, if the blood results come back tomorrow positive he will have to be
switched to a stronger antibiotic.
I will try (I won't promise!!) to update as we get the results back...we have been told that from Tuesday it can take anywhere from two
weeks to four weeks for the stem cells to start working.....this is the most dangerous time as he is left without an immune system.
..............................................................................................................................................................................................................
November 2, 2009
My daily updates just haven't happened the way I planned...between exhaustion and Jacob's requests for Mike and I to play club
penguin for hours on end...the computer manages to overheat before I get a chance to update in the hospital!
Since the last update things have been going smoothly, the blood cultures done the first day post transplant came back negative for
infection and although he had a fever for three days the broad spectrum antibiotics worked to kept him infection free, he had a CT scan
done of his sinus and lungs and also an ultrasound of his abdomen to check for fungal infection, they saw some "spots" on his liver on the
ultrasound that could have been evidence of a fungal infection so he was also started on a second anti-fungal drug through his IV to
combat this. The CT showed slight evidence of fungus in his sinus and his lungs were slightly collapsed from the bed rest. Because a
past MRI had seen liver scarring in June they decided to do another CT a week later to see if these "spots" had gotten any bigger....and
to everyone's surprise they could not see them on the CT (the work of the anti-fungal drugs-they don't think they could have worked that
fast!)....but...they are gone and that is all that matters!
Jacob had some good days and bad the last three weeks, being in isolation for 17 days after transplant was the most challenging...he
developed some bone pain in his legs and also mouth sores and had to be given some morphine infusions, but through all of this he set a
new records on the transplant unit.....the only child to undergo a transplant and high dose chemotherapy and still eat through it and not
require TPN....he is the only child I know that can gag and retch in one breath (and also look so pale you could see through him) and
then in his next breath take a bite of his meal.....his only major complaint was that he couldn't eat from the sushi bar downstairs and that
they didn't have steak on the menu at the hospital (Jacob can't have take out for 6 months following his transplant....I am going to have to
learn how to make sushi at home!)
Jacob's counts didn't start to come up above 0.1 until this past Monday and by Wednesday his polys were at 0.77 and he was allowed
off the restrictive isolation 17 days post transplant. Jacob will have to wear a mask when he is out of the house for a while as his immune
system will not function normally for up to a year post transplant. Although Jacob did require two platelet transfusions and two units of
blood, since last week he has been holding his own. To our surprise, a last minute decision was made on Thursday and we were able to
take Jacob home with us on Friday afternoon, as we have a satellite unit here at the cancer center with excellent care and because he
was eating on his own. Jacob still has his CVL which requires daily care and dressing and cap changes, he will also require frequent
blood work and will more then likely be in and out of hospital here in Sudbury with any illness up until one year post
transplant.....becuase of his unique case with high dose steroids coupled with the transplant any fever or illness is an emergency and
requires immediate investigation at the hospital to ensure that any infection is combated with immediate IV antibiotics, as Jacob is at high
risk of developing complications as his immune system is still very weak.
We are due for more blood work at the cancer center on Wednesday, as well as dressing and cap changes and to see Dr Murray.
Jacob is still limping and has a very sore left leg and foot, but so far he is fever free and very happy to be home.
Josh and Natalie were so excited to see us (we hadn't said anything to them as anything could have happened with Jake's condition
preventing our return home).....it was wonderful to be able to see them on Halloween and to enjoy it as a family.
I will update more frequently now that we are being followed here in Sudbury for a while, we will also have to make some trips to
Toronto for follow up.....Thank you to everyone for their continued support and thoughtfulness for Jacob and our entire family
Well, my daily updates have not gone as planned!! Jacob was admitted last Wednesday for the start of the chemo protocol for the
transplant. He started hydration on Wednesday, with a bunch of other meds before the start of heavy chemo thursday...Jacob's protocol
called for 5 days of chemotherapy some days lasting 7 hours. All started well and the first couple days Jacob handled the chemo well,
but come Saturday when the Thymoglobulin was added all went downhill. After the first couple hours Jacob started to get nauseated,
they added another drug to control the nausea and he started to have trouble breathing and started coughing...the nurse called for help
right away, and the infusion was paused. Jacob was already on a monitor and his heart rate starts to sky rocket, they immediately infuse
more benadryl and steroids to stop the reaction and continue to listen to his chest, at this point Jake is really coughing and is complaining
that his throat hurts and feels funny...he also develops a high fever all signs of an allergic reaction to the chemo. It takes a couple hours
for his symptoms to get under control and the drugs to combat the reaction. There is still some chemo left to infuse, and they start again
around 6pm, it seems to go well until just after the infusion is complete and Jacob starts to complain he feels sick again and his throat
hurts, after a couple minutes his entire body starts to shake and he gets another high fever...more meds are administered, but Jacob starts
to vomit around 1am...he is very uncomfortable all night, and we still have two more days of the same chemo....
Both Sunday and Monday they add high dose steroids before the infusions and this seems to stop the allergic reaction he had the
previous day...but both Mike and I are on edge the entire time...Jacob is also put on two strong antibiotics due to the fever. Jacob
wakes up Tuesday very irritable and tired and we have to leave the room for 3 hours so they can scrub the room down before Jacob has
the transplant, he falls asleep for almost the entire time. We are brought back into the room around 12:30pm and Jacob has to have a
bath in antibacterial soap before going onto the bed (he has to be bathed in the soap every day in isolation), both Mike and I have to
scrub our hands and wear gowns to enter the room now and Jacob is placed on strict isolation. Jacob is pre-medicated at 2:30pm, and
the transplant is under way at 3pm, Jacob is put back on the monitor for the transplant to monitor his heart rate and oxygen level. Jake
received three bags of stem cells, but his heart rate goes down to 51 beats/min and his blood pressure goes up to 148/96 and he has to
be given an emergency drug to bring his blood pressure down (all of this is a side affect of the preservative in the stem cells), he also has
blood in his urine and his IV is turned up to double his normal limit to flush the bladder.
Over night Jacob has to remain on the monitor due to his low heart beat and his has to be given another dose of the emergency
medication for his blood pressure as it is still dangerously high, they manage to stop the blood in the urine with more fluids and Jacob
starts the second day of transplant on Wednesday when he has to receive another two units of stem cells, his blood pressure goes up
again and for the third and hopefully final time he has to be given the drugs to bring it down...his heart rate stays a little more stable at 60,
and he is able to take the monitor off last night around 8pm......he gets blood in his urine again after the transplant and remains on a high
rate of infusion to flush out the bladder, which does the trick. He has another bad night and is up most of the night with nausea..he is
given two different drugs to combat the nausea both of which only make him slightly comfortable.
To our dismay Jacob just spiked a fever (his immune system is already almost down to nothing), he has to have two blood cultures taken
from his central line and also has to have his nose swabbed, and a peripheral poke done to check for a blood infection....he is not feeling
well today. They already have him on broad spectrum antibiotics, if the blood results come back tomorrow positive he will have to be
switched to a stronger antibiotic.
I will try (I won't promise!!) to update as we get the results back...we have been told that from Tuesday it can take anywhere from two
weeks to four weeks for the stem cells to start working.....this is the most dangerous time as he is left without an immune system.
..............................................................................................................................................................................................................
November 2, 2009
My daily updates just haven't happened the way I planned...between exhaustion and Jacob's requests for Mike and I to play club
penguin for hours on end...the computer manages to overheat before I get a chance to update in the hospital!
Since the last update things have been going smoothly, the blood cultures done the first day post transplant came back negative for
infection and although he had a fever for three days the broad spectrum antibiotics worked to kept him infection free, he had a CT scan
done of his sinus and lungs and also an ultrasound of his abdomen to check for fungal infection, they saw some "spots" on his liver on the
ultrasound that could have been evidence of a fungal infection so he was also started on a second anti-fungal drug through his IV to
combat this. The CT showed slight evidence of fungus in his sinus and his lungs were slightly collapsed from the bed rest. Because a
past MRI had seen liver scarring in June they decided to do another CT a week later to see if these "spots" had gotten any bigger....and
to everyone's surprise they could not see them on the CT (the work of the anti-fungal drugs-they don't think they could have worked that
fast!)....but...they are gone and that is all that matters!
Jacob had some good days and bad the last three weeks, being in isolation for 17 days after transplant was the most challenging...he
developed some bone pain in his legs and also mouth sores and had to be given some morphine infusions, but through all of this he set a
new records on the transplant unit.....the only child to undergo a transplant and high dose chemotherapy and still eat through it and not
require TPN....he is the only child I know that can gag and retch in one breath (and also look so pale you could see through him) and
then in his next breath take a bite of his meal.....his only major complaint was that he couldn't eat from the sushi bar downstairs and that
they didn't have steak on the menu at the hospital (Jacob can't have take out for 6 months following his transplant....I am going to have to
learn how to make sushi at home!)
Jacob's counts didn't start to come up above 0.1 until this past Monday and by Wednesday his polys were at 0.77 and he was allowed
off the restrictive isolation 17 days post transplant. Jacob will have to wear a mask when he is out of the house for a while as his immune
system will not function normally for up to a year post transplant. Although Jacob did require two platelet transfusions and two units of
blood, since last week he has been holding his own. To our surprise, a last minute decision was made on Thursday and we were able to
take Jacob home with us on Friday afternoon, as we have a satellite unit here at the cancer center with excellent care and because he
was eating on his own. Jacob still has his CVL which requires daily care and dressing and cap changes, he will also require frequent
blood work and will more then likely be in and out of hospital here in Sudbury with any illness up until one year post
transplant.....becuase of his unique case with high dose steroids coupled with the transplant any fever or illness is an emergency and
requires immediate investigation at the hospital to ensure that any infection is combated with immediate IV antibiotics, as Jacob is at high
risk of developing complications as his immune system is still very weak.
We are due for more blood work at the cancer center on Wednesday, as well as dressing and cap changes and to see Dr Murray.
Jacob is still limping and has a very sore left leg and foot, but so far he is fever free and very happy to be home.
Josh and Natalie were so excited to see us (we hadn't said anything to them as anything could have happened with Jake's condition
preventing our return home).....it was wonderful to be able to see them on Halloween and to enjoy it as a family.
I will update more frequently now that we are being followed here in Sudbury for a while, we will also have to make some trips to
Toronto for follow up.....Thank you to everyone for their continued support and thoughtfulness for Jacob and our entire family