We were finally admitted into Skids on Thursday of last week for Round 5 chemo. Round 5 we dont like too much as it has some chemo drugs that do a number on the inside of the lining of the stomach on Jake and weakens him severely. But Jake did much better than Round 3 that was just like this one! We stayed an extra day for hydration purposes and came home Wednesday. Now it is back to nursing him to drink and eat what he should be on a daily basis which is a continual nag on our parts and so far so good. It looks like he lost around 4lbs, bringing him down to 51.5lb, which is better than last time at 49lb so I am happy! And Jake did not throw up nearly as much either and I can only hope to say that it is because of the way we now feed him and the ND meds that are helping too.
We also had an opportunity to meet with the surgeon that will be performing the next step to all of this which is the removal of Jakes tumor. Possibly scheduled for the week of or after thanksgiving.
Jake has another MRI Tuesday that will give us our final conversation with the surgeon on how exactly the surgery will be performed (as in, what size the tumor is right now and whether he will have to make an incision or can go in with a camera and have three little holes instead).
The hope would be that the chemo may shrink the tumor down a bit but not always necessarily so. This is a big step for us. We opted not to have the tumor touched at the beginning (as there is always a risk of spread) that when this tumor is removed it will be disected and we will learn a lot more about the monster... we describe it like this....we consider the tumor the queen bee hive and with it gone we will have now a bunch of worker bees (neuroblastoma cells) buzzing around inside of Jake trying to find a new home and that is where the work is now the hardest because they could be anywhere... they are already everywhere and after surgery and removal of the tumor they do chemo Round 6 (same as 4) and then hit hard with all they've got (more chemo) and this in turn causes his bone marrow to collapse and hence the need for stem cell engrafting... to save and "roboot" Jake's bone marrow/white cells/red bloods cell/platlets. And they want to do this twice....the idea of all of this is too get all of the bees...unfortunately it is powerfully hard on all of the good cells too... 4 weeks each round in hospital...brings us to Christmas....
To add to this a note about Jake and his ability to cope with illnesses. Jake will become very susceptible to illnesses as his immune system is being severely comprimised... we naturally 'touch' in showing our care towards one another... with Jake, it could be detrimental... so please remember ...hands to yourselves around Jake will really benefit him :)
Heh, also remember that still the simplest way to stop the spread of bugs is to wash your hands with soap not the sanitizers, just good old fashion hand washing...
So with the tumor out they can research it and let us know where we are at too and there is two types of NB (neuroblastoma) and if his tumor has a certain gene in it... well lets just say we dont want to have it in Jake's as it just means that it is a harder monster to have to get rid of.
Okay...deal with that one when we get to it right!
Jakes school did their Terry Fox Run yesterday and weak Jake made it out to the assembly and they all honored Jake!!! Had to hold face at that one! But imagine all of his peers yelling out this 'cheer' they made for Jake... a lot rhymes with Jake... lol!! They had t-shirts made up for him... thank you Spruce Ridge for the support!
...Jake takes the cake!
......For goodness sake, we love Jake!
Friday, September 24, 2010
Thursday, September 16, 2010
Time in Toronto
We've been down in Toronto since June 1st but haven't really spent time in it... so when we got down here on Sunday night we spent the night on our sailboat that we have harbored in the National Yacht Club (that we moved back down from Port Elgin when we had to figure out how we were going to manage the time that would have to be spent down here and economically it was the better way to go then rent an apartment). The idea was to get blood work done, hang out a bit in the city and then get a bed for chemo round 5 to begin. We were suprised when Skids called us and told us that his counts were not high enough to start chemo! We hadn't had that before... and they told us to go home and get counts done again Wednesday and we will go from there... so, what do we do? You have to understand that when we make the trek down to TO that it is a big job. Packing everything, organizing the house to leave it for a week, etc... the thought of going north for a day, unloading, and possibly repacking the next day didn't really appeal to us... so we decided to stay down and take in TO.
So Jake and Dad went to the Science Centre, I went to work (nice change), had dinner with close friends (thank you Charlie, Martin and kids) Tuesday, Wednesday went to the ROM, dinner at Donetello's (lovely italian restaurant, highly recommend going to) and Toy Story 3 in 3D! Feels great for a couple days not to have to think about the obvious... every single minute of the day...
So we got the finger poke done and Jakes counts were now good enough. Now unfortunately they declared, there were no beds to start chemo! So here we are on Thursday sitting on the boat while the rain outside pours down around us hoping that a bed becomes available as Jake is on a high note and do you know what it is like to keep a 7 year old amused in a very small (but comfy) surrounding?!! LOL
Oh I will have to think of something like maybe...Eaton Centre shopping?! YES
So Jake and Dad went to the Science Centre, I went to work (nice change), had dinner with close friends (thank you Charlie, Martin and kids) Tuesday, Wednesday went to the ROM, dinner at Donetello's (lovely italian restaurant, highly recommend going to) and Toy Story 3 in 3D! Feels great for a couple days not to have to think about the obvious... every single minute of the day...
So we got the finger poke done and Jakes counts were now good enough. Now unfortunately they declared, there were no beds to start chemo! So here we are on Thursday sitting on the boat while the rain outside pours down around us hoping that a bed becomes available as Jake is on a high note and do you know what it is like to keep a 7 year old amused in a very small (but comfy) surrounding?!! LOL
Oh I will have to think of something like maybe...Eaton Centre shopping?! YES
Friday, September 10, 2010
Getting Jakes Blog underway!
It is Friday, September 10th, 2010. I've been wanting to start this blog as so many other parents do. It is suppose to be theraputic to write. And, so many of Jake's supporters want to know whats going on and this is a great way to do updates for everyone.
So where do I start... okay well as of diagnoses (June 1, 2010) Jake has had 4 rounds of chemotherapy. The first two were drugs called Cyclophosphamide and Topotecan.
A bone scan was done after these two rounds that was disappointing... no change, if anything, slight spread of the cancer to his bones...
The next two rounds were different drugs, round 3 is also the same as round 5, drugs Cisplatin and Etoposide. Round 4 is also the same as round 6, drugs Doxorubicin, Cyclophosphamide, and Vincristine.
Another bone scan was done after rounds 3 and 4 that showed no change... as in, no further spread either..
So, throughout these rounds, each drug has its monster... first 2 rounds were pretty well tolerated... Jake had to pee every two hours so that the Cyclo didnt wreak his kidneys and bladder and they are both suppose to wipe out his blood cells so unfortunately we would get home for 3 days after chemo and be back in hospital with what is called fever neutopenia. Bottom line, white blood cell counts go for a dive which leaves Jakes defences at nil to even his own natural bugs.
Round 3 wasnt so bad on the counts so we actually got a bit of a break from hospital life but it was a bad one for nausea. Jake started at 55lbs and went to 49 after this round...
Round 4 was to be really bad on the counts, which it did and left Jake with a line infection. Jake has a Central line to his heart that allows the chemo to be pushed through his system and bacteria loves plastic. The powers that be wanted to pull the line immediately but we were able to work out that if we could fight the bacteria and get us through round 5, it could get pulled then as Jake will be having surgery between rounds 5 and 6 to remove the tumor and they could put another one in then. The alternative was to take this line out, put Jake under to put another 'temperary' line in and then put in another central line in at time of surgery...instead we were able to go onto an antibiotic for 14 days, go home, have our September long weekend with family and have Jake go to his first week of school.
Because of the infection it was the first time we were pushed back a week from starting chemo round 5 but it left Jake to be able to go to school and he got off of the antibiotic pump yesterday and was able to even play hockey last night!!! If you can imagine that!
The Kid is truely amazing...its the parents and the adults that know what is truely going on but for Jake...its more of a plain pain in the butt! I and Jerre have decided that why should we stop him, when he is feeling good, from doing whatever makes him happy... although, I started the Wii and DS games and I'm sorry I did (in a way)... yes he is getting into them and will need to when he is stuck in hospital rooms for days on end... but we were not the type and you should see him on these things! Half the time now I have to pry him off of them! I know... lots more to complain about but I see the addiction side of these games!
Okay, so I've update you all on the MD (medical) side and now I will update you on the ND (natural) side. Firstly, without the support of the community, friends, workmates and family we would have not been able to expand into this other side as well as we have. We have put a reverse osmosis water system into the house, an air purifier onto the furnace, bought a juicer that is pumping more nutrients, enzymes and vitamins in Jake then we could force feed him to do daily, a bread maker, and a machine that has been said to lets say 'help'... All of the above items is because as Jake continues through his chemo and eventual stem cell transplant he will slowly not have a very great immune system... all of these items will help to hopefully keep him as healthy as possible. As well, we see a Natrulpath every month. Jake is taking it all in stride (in otherwords, humoring his mother) with his funky green shakes, and what seems hourly supplements and cocktails... 6 different ND products, a probiotic, Vitamin D, Calcium, and tonnes of other products that help, especially with healthy weight gain. I am happy to share that he is back to his 55 lbs!
Okay, I think I have filled you full for today :)
Now I am caught up and will let you all know how we make out with round 5.
Thanking you all for your continued love and support and again.... only think positive thoughts towards Jake and this adventure we have to go through... it doesnt help to be negative...
Ciao, Cath
So where do I start... okay well as of diagnoses (June 1, 2010) Jake has had 4 rounds of chemotherapy. The first two were drugs called Cyclophosphamide and Topotecan.
A bone scan was done after these two rounds that was disappointing... no change, if anything, slight spread of the cancer to his bones...
The next two rounds were different drugs, round 3 is also the same as round 5, drugs Cisplatin and Etoposide. Round 4 is also the same as round 6, drugs Doxorubicin, Cyclophosphamide, and Vincristine.
Another bone scan was done after rounds 3 and 4 that showed no change... as in, no further spread either..
So, throughout these rounds, each drug has its monster... first 2 rounds were pretty well tolerated... Jake had to pee every two hours so that the Cyclo didnt wreak his kidneys and bladder and they are both suppose to wipe out his blood cells so unfortunately we would get home for 3 days after chemo and be back in hospital with what is called fever neutopenia. Bottom line, white blood cell counts go for a dive which leaves Jakes defences at nil to even his own natural bugs.
Round 3 wasnt so bad on the counts so we actually got a bit of a break from hospital life but it was a bad one for nausea. Jake started at 55lbs and went to 49 after this round...
Round 4 was to be really bad on the counts, which it did and left Jake with a line infection. Jake has a Central line to his heart that allows the chemo to be pushed through his system and bacteria loves plastic. The powers that be wanted to pull the line immediately but we were able to work out that if we could fight the bacteria and get us through round 5, it could get pulled then as Jake will be having surgery between rounds 5 and 6 to remove the tumor and they could put another one in then. The alternative was to take this line out, put Jake under to put another 'temperary' line in and then put in another central line in at time of surgery...instead we were able to go onto an antibiotic for 14 days, go home, have our September long weekend with family and have Jake go to his first week of school.
Because of the infection it was the first time we were pushed back a week from starting chemo round 5 but it left Jake to be able to go to school and he got off of the antibiotic pump yesterday and was able to even play hockey last night!!! If you can imagine that!
The Kid is truely amazing...its the parents and the adults that know what is truely going on but for Jake...its more of a plain pain in the butt! I and Jerre have decided that why should we stop him, when he is feeling good, from doing whatever makes him happy... although, I started the Wii and DS games and I'm sorry I did (in a way)... yes he is getting into them and will need to when he is stuck in hospital rooms for days on end... but we were not the type and you should see him on these things! Half the time now I have to pry him off of them! I know... lots more to complain about but I see the addiction side of these games!
Okay, so I've update you all on the MD (medical) side and now I will update you on the ND (natural) side. Firstly, without the support of the community, friends, workmates and family we would have not been able to expand into this other side as well as we have. We have put a reverse osmosis water system into the house, an air purifier onto the furnace, bought a juicer that is pumping more nutrients, enzymes and vitamins in Jake then we could force feed him to do daily, a bread maker, and a machine that has been said to lets say 'help'... All of the above items is because as Jake continues through his chemo and eventual stem cell transplant he will slowly not have a very great immune system... all of these items will help to hopefully keep him as healthy as possible. As well, we see a Natrulpath every month. Jake is taking it all in stride (in otherwords, humoring his mother) with his funky green shakes, and what seems hourly supplements and cocktails... 6 different ND products, a probiotic, Vitamin D, Calcium, and tonnes of other products that help, especially with healthy weight gain. I am happy to share that he is back to his 55 lbs!
Okay, I think I have filled you full for today :)
Now I am caught up and will let you all know how we make out with round 5.
Thanking you all for your continued love and support and again.... only think positive thoughts towards Jake and this adventure we have to go through... it doesnt help to be negative...
Ciao, Cath
Monday, September 6, 2010
Subscribe to:
Posts (Atom)