| Updates |
September 2, 2009
My gosh it has been far too long since I updated Jacob's site.....I wanted to start updating again as we will be leaving for Toronto on
September 12, 2009 to start the first phase of treatment for Jacob's stem cell transplant at Sick Kids in Toronto. After many years
and a good fight we have been unable to get Jacob off Chemotherapy and ACTH without relapse. Our hope now is that the stem
cell transplant will be able to "erase the immune system's memory" and leave Jacob with a new immune system that no longer attacks
his brain. Thus far, we have escaped a relapse with Neuroblastoma, but with every new chemotherapy drug that enters his body
brings with it increased risk of another cancer down the road.
Jacob will start on Sept 12 with a three day admission, day one will be hydration for the chemo, day two and three he will receive
high dose chemotherapy. If they don't have to change his line we can return home for 10 days and return to Sick Kids on Sept 27th.
On the 27th Jacob will be admitted and will undergo surgery to place a line in his groin (he requires this line as his arteries are too
small to handle the volume required when hooked up to the dialysis machine for stem cell collection). The line is very uncomfortable
and we are told that he won't be able to sit up until the line is out. He will be put on the dialysis machine every day for approx. 4
hours, he will need 3-4 days of collection as they need more volume to filter out the mature cells with a procedure called CD34. After
collection Jacob will have a day off as they harvest the stem cells collected and will return for surgery to have the line in his groin
removed and will also have his port-a-cath removed and a broviac put in. A broviac is an external central line that allows for more
medications to be added and more volume to be pumped through, and also decreases the risk of infection as there is no needle
needed for access. If you can believe it, Jacob is excited to get this line change as it means less needles! After the day off Jacob will
be admitted this time for the long haul. He will be given a heavy dose of chemotherapy, enough to kill off his entire immune system, at
this point the stem cells are re-infused and the waiting game begins.
The immune system can take anywhere from 14-30 days to start producing cells again, and in this time Jacob will be in isolation in
hospital......any infection would be life threatening at this stage and he will require repeated blood and platelet transfusions until his
system can start to produce the cells on its own.
I will be updating as we start the process.....we will have an internet connection and also a web cam for Jacob to keep in touch with
Josh and Natalie back home.....
My gosh it has been far too long since I updated Jacob's site.....I wanted to start updating again as we will be leaving for Toronto on
September 12, 2009 to start the first phase of treatment for Jacob's stem cell transplant at Sick Kids in Toronto. After many years
and a good fight we have been unable to get Jacob off Chemotherapy and ACTH without relapse. Our hope now is that the stem
cell transplant will be able to "erase the immune system's memory" and leave Jacob with a new immune system that no longer attacks
his brain. Thus far, we have escaped a relapse with Neuroblastoma, but with every new chemotherapy drug that enters his body
brings with it increased risk of another cancer down the road.
Jacob will start on Sept 12 with a three day admission, day one will be hydration for the chemo, day two and three he will receive
high dose chemotherapy. If they don't have to change his line we can return home for 10 days and return to Sick Kids on Sept 27th.
On the 27th Jacob will be admitted and will undergo surgery to place a line in his groin (he requires this line as his arteries are too
small to handle the volume required when hooked up to the dialysis machine for stem cell collection). The line is very uncomfortable
and we are told that he won't be able to sit up until the line is out. He will be put on the dialysis machine every day for approx. 4
hours, he will need 3-4 days of collection as they need more volume to filter out the mature cells with a procedure called CD34. After
collection Jacob will have a day off as they harvest the stem cells collected and will return for surgery to have the line in his groin
removed and will also have his port-a-cath removed and a broviac put in. A broviac is an external central line that allows for more
medications to be added and more volume to be pumped through, and also decreases the risk of infection as there is no needle
needed for access. If you can believe it, Jacob is excited to get this line change as it means less needles! After the day off Jacob will
be admitted this time for the long haul. He will be given a heavy dose of chemotherapy, enough to kill off his entire immune system, at
this point the stem cells are re-infused and the waiting game begins.
The immune system can take anywhere from 14-30 days to start producing cells again, and in this time Jacob will be in isolation in
hospital......any infection would be life threatening at this stage and he will require repeated blood and platelet transfusions until his
system can start to produce the cells on its own.
I will be updating as we start the process.....we will have an internet connection and also a web cam for Jacob to keep in touch with
Josh and Natalie back home.....
September 20, 2009
We have started the protocol for stem cell collection, so far so good! My nerves hadn't kicked in until the chemotherapy last week,
but sleeplessness is upon both Mike and I as we get ready for the transplant that is now only a week away. Joshua is starting to get
really upset about the time he is going to have to spend back home without us, we are hoping that the web cam and Skype will help
with some of the anxiety and will allow all of us to keep in touch and for the kids to see and talk to us any time of the day.
Jacob was able to get the large dose of Cyclophosphamide here in Sudbury at the Cancer Center last Tuesday (this saved us a trip to
Toronto which we were very thankful for) and he was transferred over to St.Joe's Peadiatric floor for a 24 hour hydration and to
receive the four doses of a drug called Mesna to protect his Kidneys from the Chemotherapy. Other then some nausea and fatigue
Jacob has been handling the chemo well. Jacob requires blood work through a finger poke three times a week and has also been put
on GCSF, which is an injection everyday to stimulate the release of stem cells into the peripheral blood for collection, this can cause
bone pain as his counts start to rise. Jacob will remain on the ACTH injection and all of his other meds until the Chemotherapy for the
stem cell transplant is started. We will be travelling down to Toronto on Saturday the 26th to get settled in and Jacob will be admitted
on the 28th in the morning for an OR trip to have the femoral line inserted and to have his port-a-cath removed and an external double
lumen line put in. Jake will need a second trip to the OR after the collection is done (we are hoping only three days) to have the
femoral line removed. The Chemo and everything else required for the transplant can be done with the other line they will be inserting
at the same time.
I will update as the stem cell collection gets underway .....Thank you to everyone for your support and prayers for Jacob
October 7
We arrived in Toronto on the 26th and Jacob was admitted to the transplant floor at Sick Kids on the 27th in the afternoon, his port
was accessed and blood work was taken for the trip to the OR on Tuesday. Jake was originally scheduled for the OR at 12:30, but
the IGT department called at 7:30am and they could take him for 9am (much better as Jake was NPO and was not happy about not
eating) They allowed Mike to go into the OR room until Jake went to sleep which Jacob likes, all went smoothly and Jake was off to
sleep. The procedure took about two hours and Mike and I were able to go see him in recovery. Jake was in some pain when he
woke up so he was given some morphine, which only took the edge off. Jake was bruised from head to toe from the port being taken
out and the new external line insertion and both legs were very sore from the femoral line.
Jake had an alright night and was on morphine for the pain, he has to remain in a lying position so that the femoral line works. We
were taken down to the dialysis unit on Wednesday for his first day of apheresis. Jacob started to scream when we got into the room
as the machine was loud and very large. The nurse managed to get Jake hooked up (2 huge lines with 6 branching off into the
machine) and started the machine, which takes his blood out through the femoral line and filters it through the machine to take out the
stem cells.....it was a little unnerving as you can see his blood go into the machine (it looks like a lot). We managed to convince Jake
that everything was OK and he decided that he would watch a movie, he is also hooked up to a monitor for vitals for the entire
procedure to make sure his heart handles the procedure and to monitor blood pressure and for electrolyte disturbances. Everything
goes OK, no immediate problems with blood pressure etc. Jake is hooked up for 6 hours and we get back to the floor around 3pm,
blood work is done and his platelets come back under 50 and he is also low on potassium., we also get word by supper time that they
only got 0.5ml of stem cells (5 is a good sample) and that he will have to go back on the machine for another day.
Jake needed a transfusion of platelets overnight and potassium has been added to this medication in the morning, we are back on the
dialysis floor by 8am, Jake is hooked up right away and starts to throw up and is complaining about pain in his head. The nurse
assures us that his is all normal, and gives Jake some gravol through the line and the large dose knocks him out. Jacob sleeps for most
the 6 hours, and wakes up while the nurse is disconnecting him from the machine....he starts to heave again and is now screaming for
someone to help him...he is given another large dose of gravol which knocks him out again....he looks very pale and does not look
well. At this point we are just hoping that this is the last day for collection.....
By supper time we get news that again they did not get enough stem cells and Jake will have to go back down for another 6 hours on
Friday...by around 6pm Jake is awake and is still not well, they decide to give him potassium through the IV which seems to make him
more comfortable. Overnight his also needs magnesium and calcium as he was very low. The collection goes better Friday as they
keep continue to give Jake potassium through the IV as the machine runs. We get word at 6pm that they now have 3ml's of stem cells
which is enough for the transplant, but they can not do the CD 34 selection and that they may have to take bone marrow this week for
a back up.
The doctor comes in at 7pm to take out the femoral line (we thought he would go the OR to have it removed-but we were informed
that they just cut the stitches and pull the line out in the room)....Mike heads out...he can't watch. They remove the bandage which is
painful in itself, and cut the three stitches and then pull the line out (it is about three inches long), he then needs pressure on the site for
15 minutes so that the bleeding will stop.....Jake is covered in sweat from screaming, but we are all happy the line is out and he is
done the collection and will also be able to get out of bed.
We are able to go home on Saturday for three days before his admission today to start the chemo for the transplant. We were so
happy to be able to see Josh and Natalie on the weekend, Josh has been having a really hard time with us leaving.
We are due on the 8th floor today at 1pm to start chemo...they are not going to take bone marrow as they are comfortable with the
cell count they have from last week...although we don't have a back up they have assured us that the need for a back up is very
minimal....I will try to update daily....
We have started the protocol for stem cell collection, so far so good! My nerves hadn't kicked in until the chemotherapy last week,
but sleeplessness is upon both Mike and I as we get ready for the transplant that is now only a week away. Joshua is starting to get
really upset about the time he is going to have to spend back home without us, we are hoping that the web cam and Skype will help
with some of the anxiety and will allow all of us to keep in touch and for the kids to see and talk to us any time of the day.
Jacob was able to get the large dose of Cyclophosphamide here in Sudbury at the Cancer Center last Tuesday (this saved us a trip to
Toronto which we were very thankful for) and he was transferred over to St.Joe's Peadiatric floor for a 24 hour hydration and to
receive the four doses of a drug called Mesna to protect his Kidneys from the Chemotherapy. Other then some nausea and fatigue
Jacob has been handling the chemo well. Jacob requires blood work through a finger poke three times a week and has also been put
on GCSF, which is an injection everyday to stimulate the release of stem cells into the peripheral blood for collection, this can cause
bone pain as his counts start to rise. Jacob will remain on the ACTH injection and all of his other meds until the Chemotherapy for the
stem cell transplant is started. We will be travelling down to Toronto on Saturday the 26th to get settled in and Jacob will be admitted
on the 28th in the morning for an OR trip to have the femoral line inserted and to have his port-a-cath removed and an external double
lumen line put in. Jake will need a second trip to the OR after the collection is done (we are hoping only three days) to have the
femoral line removed. The Chemo and everything else required for the transplant can be done with the other line they will be inserting
at the same time.
I will update as the stem cell collection gets underway .....Thank you to everyone for your support and prayers for Jacob
October 7
We arrived in Toronto on the 26th and Jacob was admitted to the transplant floor at Sick Kids on the 27th in the afternoon, his port
was accessed and blood work was taken for the trip to the OR on Tuesday. Jake was originally scheduled for the OR at 12:30, but
the IGT department called at 7:30am and they could take him for 9am (much better as Jake was NPO and was not happy about not
eating) They allowed Mike to go into the OR room until Jake went to sleep which Jacob likes, all went smoothly and Jake was off to
sleep. The procedure took about two hours and Mike and I were able to go see him in recovery. Jake was in some pain when he
woke up so he was given some morphine, which only took the edge off. Jake was bruised from head to toe from the port being taken
out and the new external line insertion and both legs were very sore from the femoral line.
Jake had an alright night and was on morphine for the pain, he has to remain in a lying position so that the femoral line works. We
were taken down to the dialysis unit on Wednesday for his first day of apheresis. Jacob started to scream when we got into the room
as the machine was loud and very large. The nurse managed to get Jake hooked up (2 huge lines with 6 branching off into the
machine) and started the machine, which takes his blood out through the femoral line and filters it through the machine to take out the
stem cells.....it was a little unnerving as you can see his blood go into the machine (it looks like a lot). We managed to convince Jake
that everything was OK and he decided that he would watch a movie, he is also hooked up to a monitor for vitals for the entire
procedure to make sure his heart handles the procedure and to monitor blood pressure and for electrolyte disturbances. Everything
goes OK, no immediate problems with blood pressure etc. Jake is hooked up for 6 hours and we get back to the floor around 3pm,
blood work is done and his platelets come back under 50 and he is also low on potassium., we also get word by supper time that they
only got 0.5ml of stem cells (5 is a good sample) and that he will have to go back on the machine for another day.
Jake needed a transfusion of platelets overnight and potassium has been added to this medication in the morning, we are back on the
dialysis floor by 8am, Jake is hooked up right away and starts to throw up and is complaining about pain in his head. The nurse
assures us that his is all normal, and gives Jake some gravol through the line and the large dose knocks him out. Jacob sleeps for most
the 6 hours, and wakes up while the nurse is disconnecting him from the machine....he starts to heave again and is now screaming for
someone to help him...he is given another large dose of gravol which knocks him out again....he looks very pale and does not look
well. At this point we are just hoping that this is the last day for collection.....
By supper time we get news that again they did not get enough stem cells and Jake will have to go back down for another 6 hours on
Friday...by around 6pm Jake is awake and is still not well, they decide to give him potassium through the IV which seems to make him
more comfortable. Overnight his also needs magnesium and calcium as he was very low. The collection goes better Friday as they
keep continue to give Jake potassium through the IV as the machine runs. We get word at 6pm that they now have 3ml's of stem cells
which is enough for the transplant, but they can not do the CD 34 selection and that they may have to take bone marrow this week for
a back up.
The doctor comes in at 7pm to take out the femoral line (we thought he would go the OR to have it removed-but we were informed
that they just cut the stitches and pull the line out in the room)....Mike heads out...he can't watch. They remove the bandage which is
painful in itself, and cut the three stitches and then pull the line out (it is about three inches long), he then needs pressure on the site for
15 minutes so that the bleeding will stop.....Jake is covered in sweat from screaming, but we are all happy the line is out and he is
done the collection and will also be able to get out of bed.
We are able to go home on Saturday for three days before his admission today to start the chemo for the transplant. We were so
happy to be able to see Josh and Natalie on the weekend, Josh has been having a really hard time with us leaving.
We are due on the 8th floor today at 1pm to start chemo...they are not going to take bone marrow as they are comfortable with the
cell count they have from last week...although we don't have a back up they have assured us that the need for a back up is very
minimal....I will try to update daily....
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September-October 7, 2009