CarePages is a service supplied by hospitals like Sick kids that gives a parent free access to hold their own Blog site and it is a lot easier for me to continue with them then to continue to manage this site.  So therefore I will be letting go of this website… it brings another change to this ever evolving path of ours but it allows me to update words and pictures so much easier and I think you will enjoy it!  Please log on to

Immunotherapy has not been an easy therapy at all… to the point of wanting to pull the plug before we even get too far into it.. high dose I.C.E. was easier… I-131 MIBG therapy was easier… and this therapy only has a slight percentage advantage to all the other therapies out there to be effective… and not so much on the bulky disease that Jake has even…

But what else are we to do at this point?  Nothing but this is the answer… we will go through this next round and then do scans.

The first round was very hard on Jake.  It literally does what they says it does but until you see it happening can you believe we are taking part in it… capilary leakage… 6 pounds of fluid build up on a 60 lb body…blood pressure bombs that scared Sickkids enough to have ICU in the halls standing by…I don’t know what else to tell you other than to say it was scary…

And Jake has not really recovered from it and all of the other meds they have him on for the trial… GM-CSF gives him fever…Accutane within days had his lips chapped and cracking… he’s in constant pain and therefore on long acting morphine.

We aren’t happy people right now overall… sad most days.  Watching Jake not recover like he has every other time upsets us… makes you think horrible thoughts… puts you into the reality of the moment we are stuck in…

We are trying our best, trying to do what we can.  Morphine numbs the pain, continual purchases of whatever Jake wants keeps him happy, while we try to get him to eat and drink, poop and pee, and walk him up and down the laneway to get his blood circulating… its all we can do…

And as always, thank you everyone for your continued support to care, to give… as you feel Jake’s pain…and ours.

Please add yourself onto my Facebook at Cat Schafer if you would like to keep updated on Jakes progress as I am not sure where all of this is going to go right now and think I may end this Blog site… I have to bring things down a notch in what I have to do in the time I have to do it on a daily basis…simplify things that’s all.

Keep Jake in your thoughts… xo Cath

We went right back to clinic on the Monday to get results to how the I.C.E. did.  We were told that Jake had stable disease.  So, what we were hoping was to have some debulking from a very heavy chemo that wreaked havic on Jake’s bone marrow… and it did not… but stunned the cancer cells for a bit which we will take… every day, week, month counts.  The conversation was whether or not to do it again, expecially at the strength of the first round we had choose… but we couldn’t start any thing anyways because Jake’s blood counts were not high enough so we went home…and then it happened…

Jake has a series of books called “And then it happened” and in the book 3 boys get into all types of trouble and at the turning point the author uses the statement ‘and then it happened’… great little stories, very funny… but to get back to our point in our story…

We get a call that we have to go through a battery of tests and scans… WHY?!  They said that something is up… a trial… come in … we will talk… well I couldn’t believe what they told us… talk about timing…

Remember me telling you about Immunotherapy??  To remind you of it… it was the latest and greatest trial that they took off trial early and actually put it onto the up front therapy protocol for newly diagnosed kids because it was actually affective against the NB cells… Jake didn’t get to that point because his disease would not go away with the chemo regiment…well that Immunotherapy was an antibody that was made up from a mouse derivative and in recent years they have been trying to use a human synthesized antibody and it was being trialed on relapsed neuroblastoma kids… the timing of trials is always an issue, how many kids get on them is an issue and it was always (what seemed like) a far fetched notion that we would ever think to get Jake to Immunotherapy… that’s where all my conversations of New York were coming in as Sloan has their own Immunotherapy called 3F8 (which we can still get to in the future..if needed…) but this is soooo much better for us right now! 

So Jake had to do all sorts of testings and scans to confirm he was eligible and just at the end of this week have we been told… it’s official, he’s on, the drug is on order and we start MONDAY…OMG… 

I still am trying to figure out what is going on in my brain over this… I was speechless… yes… me… speechless… I couldn’t smile and jump up and down but I also couldn’t faint…!  Do you believe what you hear, can it actually be happening for Jake… and actually, as I type this right now do I feel the surge of emotions to what this means to us all….

Chemo has never worked for Jake… MIBG I-131 therapy bought us 9 months of good quality time together for the summer of 2011… this could be the drug that finally may effect Jake’s NB cells… please LET IT BE! 

This drug works very differently then chemo does… chemo supresses the immune system… immunotherapy put’s the immune system for lack of better words on speed to go after the NB cells specifically… to hopefully educate the immune system to realize that those cells do not belong in there…as the NB cells are very smart at tricking the regular cells in thinking they are buddies and belong. 

There is the bad part of this therapy… you take the good with the bad… but the bad is interesting in itself… the immune system will know only one job… and many many things can happen while your immune system in on speed.. a lot of back doors can be left open by accident and let in ‘things’ that aren’t suppose to be let in…

There has not been a week between our last chemo session that we haven’t been at Sick kids… we are tired but make the best of it… recently able to attend Nicole Schafer’s wedding in Toronto as well…Jake looked amazing in his tuxedo… it was a great first wedding experience for Jake, thanks Nicole and Chris Caldwell!

Again, what can I say about our community support these days!  Word has spread again about Jake’s fight and Maddie continues to take her challenge to the next level!  Maddie has the whole Clifford community supporting her right now, go Maddie go!  Apparently, she is going bald that’s how well she’s done!  Thanks Maddie!

My cousin’s wife Shannon came out of no where wanting to do something for Jake… next thing you know Windsor and area knows a lot more about the fight on Neuroblastoma!  Shannon too went bald and she looks great!  Thanks Shannon!

The Spot Restaurant girls in Mt. Forest wanted to do something for Jake and the next thing they knew the Mt. Forest community was contributing to one of the girls to cut off her pony tail!  It really is a satisfying feeling to cut your hair off for such a cause (we all know all too well), thank you! 

The Redwood Restaurant has a jar out for Jake with his picture on it… I saw it and it brought me to tears… thank you everyone.

And it goes on…to all of those that are raising awareness to the fight against Neuroblastoma and helping Jake… thank you so much.

We will not know updates on how this therapy helps Jake until scans 2 months from now… so I will keep you posted whenever I can…

Thank you so much for your continued support, know that we think the world of you all and are sorry that we can’t see you as often as we’d like, or talk, as we are so often back and forth that when we are home we just like to enjoy our time together at home… Jake actually found a breeder for Charlie (our chocolate lab) so that he may enjoy a litter of pups in the near future…yea, I know, but what can you say to a litter of adorable pups to make a boy happy huh?!  YES, he keeps us busy and we love it!

As always, devastation to how fast this all seems to be moving now more than before. 

We are running out of options of treatments that are ‘familiar’ to oncologists.  Phase trials are next on the artillery and they are vast… and the comment comes up that there is no right or wrong decisions to make.. the decision you make will be the right one they tell us.. they can’t lead us to one trial that may be better than the next.. they just don’t know…and then there are only so many of those trials available here in Toronto and the windows of availability to be on those trials come and go… for example, if they have room for 1 child now, that may not be available tomorrow… its like car sales… and I hate being forced into those type of decisions and it actually pushes me away from those…

So, we start looking, investigating, talking to other oncologists.  We decided to talk to the New York Sloan Kettering Neuroblastoma clinic.  Its New York, they have their own program, why. we don’t know. 

So we get ‘concensus’ that our next course of action is a chemotherapy regiment called I.C.E

Toxic, hard on the system ICE.  We have to go to the big guns again and hope it buys us time…and to make matters interesting MSK (Sloan) and Skids (Toronto) ICE regiment was not even close to the same cocktail.  So Jerre and I literally wrote each on a piece of paper, threw them face down on the hospital bed and at the same time flipped them over to discover if both of us agreed with which type of regiment we should go with… we both agreed… as we always do at the end… but theirs was a much stronger formula and we went with it.  The point is to hit it hard and that’s what we hope to do.

With that we hope that it does.  We have scans to confirm it before we would do another round… and then we need to pick our next options.  I am leaning towards MSK.  And that is where life now gets more interesting for us..

MSK needs insurance coverage.  We are Canadian.  We don’t have insurance coverage for the States.  We will do everything to fight OHIP for it back but that is a process that we do not have time for if we have the opportunity to get down there soon.

I put out a comment on Facebook in humor of this huge weight that has been put onto our shoulders.  I mentioned as I posted Jake without his curls again that we just need 4000 people to raise $1oo each to be as brave as Jake to shave your heads again and the outpouring of support on one comment on Facebook as been heart felt.  I want to mention the leader of this pack… Maddie Atchison decided on her own to raise $5oo to cut her ponytail off and $1000 to shave her hair right off.  Way to go Maddie!

We will do what we have to.  If there is an opportunity to go we will take it.  So now we wait and see what Jake’s body decides to do.

Jake has mastered these chemo therapies pretty well.  We got home for a few days and were warned of the drops in blood counts would be soon and they were.. home Monday, by Friday Jake had fever and a week later we are still at Sick Kids.  Jake has had already 3 platelet transfusions and about to be on his 2nd red cell transfusion… and we wait for his white cells to slowly move their way back up so that we can go home again for a bit. 

Jake is an amazing kid eh.  He has been stuck in this room now for a week and he takes it all in stride.. he doesn’t know know… but he ‘knows’ what we need to do and he does pretty good in here.. He is so smart and funny. charms all of the nurses, growls at the doctors and always has a new plan in the works… he wants to get our Chocolate Lab Charlie bred, so he finds everything he needs to know.. I mean everything… and dictates to us what he needs us to do… then his Auntie Tara has an important birthday this year.. and he shares that birth day and they have it planned to go to Hawaii and Jake’s researching the places to stay, the things to do and combining info from nurses that have been there… man … he is amazing.

People ask why I am still at work.  Some days I wonder myself but on those off days, I need it.  It gets my mind thinking about other things and I love my job and most of my clients are huge Jake supporters and are very understanding…and, we need to keep a bit of normalacy.  Jerre and I don’t need to add another stressor of insecurities of home finances to the mix either.  You want to feel as normal as possible and when we are not in hospital and have those days, we take them.

Wanted to also thank the local papers for continuing to communicate to the public on Jake’s fight.  Jake knows  how much his community cares for him.

So, if for some unknown reason that you were off of the planet the week before Christmas just google Justin Bieber and Jake Schafer… you will be caught up.  May I just say to that experience how thankful we are to The Wish Foundation, Justin Bieber, The Leafs and CTV for picking Jake.  You can imagine how this may have not come to be… it was truely a wish come true for our boy.

From that experience it made me realize that “Wish’s” can actually come true… Jake was asked a few times whether or not there was another wish he’d like as meeting THE Justin Bieber is a bit extreme… nope, he wasn’t changing his mind… and then for it to go down like it did… again, unbelievable… which brings me back to my realization… could it BE possible… could we actually possibly BE able to keep Jake from perishing from this disease??  YES, it is possible… just the HOW’s, the WHERE’s, the WHO’s, the WHAT’s, and then the endless WHY’s… have to be all discovered!!!  WE NEED A CURE!  WE NEED A PATH!  WE NEED the COURAGE to carry on!!!  Before this week… I was getting weak… it’s hard to keep going sometimes!  But, just maybe… we can conquer this!  I have to remember that!  But it’s those decisions… that are the hardest, we will know if we make the right decisions or the wrong decisions but it is my son’s livelyhood that is effected by it…

Another element to this experience is the fact that Jake is back in the spotlight.  A year and a half ago when our community put together the most unbelievable fund raiser for our family we were overwhelmed by the generosity.  It has been eighteen months since…and there are still many options.  Some are inside of OHIP, some are well outside.  The American or multiple International phase trials that could be more geared towards Jakes individual needs are out there…but at a cost.  If the occasion arises that we could not pursue a potential cure or kill… we are so confident if we needed to reach out again to help Jake.  Thank you for your overwhelming support in helping Jake to beat this…

And on that… the New year has begun.  A call into Dr. Modak from New York is to happen this week.  A visit to Sick kids this week to re do all of Jake’s scans… again…  A visit planned to Montreal to discuss the same  I-131 MIBG therapy Jake had in Boston a year ago (now available in Montreal)..do we do it again??  Pros and Cons to that (on Jake’s bone marrow) and whether it will do good or harm…another week of Chemo planned for the second week if the scans show no further progression… if they do, off of that chemo… and then what… EXACTLY… hence all the meetings and searches for phase trials… another I just read about in North Carolina… the list will go on… and the decisions will be made… just ..again, the wheres, whats, etc…

Christmas was lovely and quiet.  Jake has been happy, a bit of pain in his bones here and there, not as active as he use to be, but still wanting to do it all!  And so he shall…

We have been filling his time over the holidays with his friends, he even felt well enough to have a spur of the moment New Years Eve slumber party with whomever could come and it was all for Jake and he didn’t want it to end!  Great fun!

I write in comfort right now because we have been home and away from the hospital and the reality and I wish I could always be this positive… truth is, after a week at Sick kids… well it just takes it out of you.. and I just want everyone to know how much we appreciate your support, your understanding when we just don’t want to talk and you know it and well… as always, love ya all!

XO Cath…and P.S. no sentimentals this time about the New Year … I could write forever otherwise…you know what we are faced for this year… I just want to be here writing about Jake… just as I have always wrote…but please… live each day with a bit of a thought to what will make this day special…as it could be your last.

Happy 2012 folks.

Jake did well on the adventure until the last week.  Fever scares and pain became concerning but Jake fought through and when we landed in Toronto we went straight to Sick Kids.  We stayed a week, another round of chemo, a line insertion surgery on his chest and we were home by the following Friday.

Home… with in a few days the Jake we know has reappeared. 

Winter has hit, we have snow, Jake is out on the ATV as I type ,enjoying the cold… me, not so much… I will hold onto my tropical memories of Australia for a little longer thank you very much.  But for Jake it doesn’t matter, he enjoys this winter wonderland/Christmas season so much.  We attended by far the best Santa Claus parade held in Holstein, Ontario that is strictly horse drawn, beautiful.

This month, I will use many “words/statements” from other parents and readings I’ve come accross..

…we are grateful to be here today with our son…our friend Indira uses this word all the time… a mom/family that is in the NB world…we think of them often as well..their daughter Maya fighting the fight too..

…we are reminded of the “evilness” of what we are in the middle of when I read facebook messages of the fact that it has already been 1 year since Connors death… unbelievable…thinking of you Elena and your family…

…we are reminded of the continous “giving”  that is being done to try to find the cure for this cancer… Sebastians family (another lost little boy) out of London has raised over $100,000 and just gave it to the James Fund to help the cause…thank you..

…we are reminded of the continous “fighting, and not giving up” when we read of the struggles and fights our friends Antonia/family have had to get USA treatments covered to have our boy Nate continue his amazing fight…

…there is a parent writing on a blog that I am involved in, the NB world I like to call it… but I needed to copy this little story that he has wrote because by far I believe this will help our friends and family understand our point of view right now on how we are surviving/living…

>>>Forgive Me if I’m Not Miserable

Sheila and Suzanne got a bit of grief today. Sheila is Spencer’s oncologist. Suzanne is his primary nurse. Together they know us as a family at least as well as, well, our family. They are family. We make all our important decisions together.

Today, there was a meeting among the medical staff about Spencer. Some concern was expressed that perhaps unwarranted hope was being passed on to us by pressing ahead with chemo when there is really no reason to be hopeful. There was also some alarm that we seem to walk around the hallways smiling and generally cheerful. It was observed that I am quiet. I guess the overriding concern, whether stated or not, was whether or not Tracey and I are at all plugged into reality or if we wander about in a serious state of denial.

Forgive me if I am not miserable.

Believe me, I am miserable. But I’ve had six years of training. I fake it well.

A long time ago, Spencer was statistically dead. That is to say, the likelihood of attending his wedding was infinitesimally small. The likelihood of him ever being a teenager was tiny. Problem was, we had this vibrant, very much alive, little boy to contend with. So we had choices to make. We had to decide if every day Spencer was a little closer to death. Or if every day he was alive and we should damn well live the best we can. If it’s not obvious which choice we made, then we have failed.

We might very well be on a train headed down the tracks with the bridge washed out. We do of course have the choice. Shall we run to the back of the train, hide underneath a seat, and moan and whimper? Or would it be better to get dressed for dinner, head to the dining car, and have a few cocktails while enjoying the scenery? If we could jump off the train, believe me we would. In the meantime, have you seen my jacket?

So if you see me hopeful about the chemo my son is getting, don’t worry. I’m under no illusion that all of a sudden things will be better and remission is just around the corner. I don’t believe that any more than anyone else. Trust me, I do the mental processing 24 hours a day. Do I believe the chemo might relieve his pain and make him feel better, and maybe we can go home have some fun or get another pass and go gokarting or whatever? Absolutely. It is possible.

I also understand that we are not waiting for God’s gentle hand to guide him to a better place. Neuroblastoma is an ugly beast that will rip apart his body with painful tumours. So let’s look at the alternatives. Being treated to death is not the worst thing that can happen.

So no we haven’t crushed Spencer’s hopes and told him he is dying. Last time I checked he was alive. I think they call that living. Will we come to that point? Yes. Likely. We discuss it every day or so. Have we taken advantage of all of the wonderful palliative services that are available to us? No. Thanks. We’re comfortable for now on 3B with the people Spencer knows giving him the care that he is familiar with. We don’t need to get freaky and fill our house with hospital equipment or go and live at Canuck’s place. Maybe later. Not now. And don’t ask, we know it’s there for us if we need it.

So suck it up. Get over it. The Dollings aren’t crazy. Their heads are screwed on tighter than yours. We’ve got a job to do. Let’s head for the dining car.

>>>

With that know that the Schafers are keeping their minds busy with work and projects around the house, looking forward to three family weddings coming up in the new year, still searching for ways to keep this NB at bay, an appointment in Montreal shortly, another chemo round before Christmas, hopefully talking to New York docs shortly, etc.  and wanting to wish our best wishes for you and your families to have an amazing Christmas and New Years… and you will hear from us in 2012…Hug, kiss, love and know that we just got through another year!  And we have had a great one!

xo Cath.

October was a month of being thankful for what we have today, beautiful fall days for Thanksgiving in Ontario, Canada we had.. family togetherness… friend get togethers, it was a nice month.

As most know Jake had his 3 month scans again…  we were really hoping to hold on to the “no change” status… but to no avail… The last week of October we started a week of Chemo again… the cancer has spread.. we had to mourn, we had to grieve, we had to act, we had to work, we had to be there for Jake… we have to face facts… we have to fight…

So, we started a week of chemo, we are going on a “life” trip… we will be back.  We allowed Sick kids to take bone marrow again, we have a CT scan and MRI Thursday… and then we pack.

We will be back… maybe…no, we will be back… and be ready to fight… that’s all we can do.

As always, we love you all because you love our son… do what you can, think positive, pray, hug and love… xo Cath

To go back to the end of last month for a moment.  The 1 year anniversary to the amazing Carnival that our “locals” did for Jake one year ago passed and we remembered the day fondly.  We also can’t continue to thank ALL that made it happen and ALL that contibuted towards Jake’s health.  THERE IS NO DOUBT in our minds that without that ‘boost’ we would not be in the position we are in today.  We were able to freely do what we felt we should for Jake… we are forever grateful.

Jake broke his leg from my last update…I know… don’t ask!…okay, I’ll tell.  The boy played his first year of softball and did amazingly!  And he slid into a base… we saw it happen… we watched him limp… we had a planned clinic visit and said he is still limping from a sport accident… they said ‘let’s do an xray, just in case’… and sure enough!  No cast due to location of break… and it healed as fast as it was discovered.

So Jake did a bit of Golf Camp, a bit of soccer, a few day camps, a good deal of different positions of baseball, swimming and then we were boating and wham fever struck… knew it was too good to be true..

Jake infected his CVL, the line that was used to feed chemo into his body… we say, good riddance honestly… weren’t using it, had to flush it every day… was bound to get infected sooner or later because my kid is trying to be a kid…

So, we pulled it out.  It was surgery to remove it but Jake is an All Star and came through that just fine (always scary though)… it was determined to have been the right move however… bacteria was in the tip of it, which was in his heart… leaving us in Sick Kids for over 2 weeks on iv antibiotics.

Home now, and relieved to be!  Not easy to do!  We had chickens that had to get into our freezer, doggies and horses to look after, work to keep up with.. and we accomplished it with the help of family and friends .

Over time, Jake was able to go on some day passes.  Try keeping him in a hospital!  We did the Ex, movies, shopping, visits with family and friends, more boating… we made it work!

While in hospital, we felt wierd being there… uneasy… we saw our Neuroblastoma friends Maya and Nate, we seem to all be doing well right now and it makes us all think, wonder and get angry at times… Various doctors that were in charge of the floor and nurses would make silly questions/comments to Jakes condition, etc.. and I just didn’t want to talk much about it…We are enjoying the sense of freedom.

Who knows what is to come around the corner but we are in our last week of summer, school is upon us and hockey practice is coming soon!

TATA for now, AGAIN, thank you all for your continued support and after a recent politicians death that effected so many of us by his loving words left I leave you with a phrase I took from another mom’s FB status because I really do believe we all need to keep this within us each day… “Beginning today, treat everyone you meet as if they were going to be dead by midnight.  Extend them all the care, kindness and understanding you can muster. Your life will never be the same again.” Og Mandino

XO Cath

Can you believe it is already July of 2011?!  I was thinking, as I get ready to go to the Holstein Rodeo, what was I doing this time last year?  What was I thinking, how much fear was inside of me?  Now, I seem to be in this euphoria… life seems good again… Jake seems so normal right now… it make me cry sometimes to think… that it so isn’t.

But we live that way right now… we love him every day… we watch our schedule, we watch what we eat, we make sure that we keep an eye on anything that could come up behind us and scare the shit out of us again~…

That’s all we want to do right now… let Jake be Jake, let us all enjoy the summer, and we so are… every weekend we take full advantage to live like we would be okay to die the next day knowing that we have truely lived… no regrets, no yesterdays, only todays…

Since last post, Sick Kids called us in.  They are on our backs, they have to keep up with us… they wanted another MIBG scan.  Already? I said… so we did.  NO CHANGE… so to recap, end of January was the MIBG therapy in Boston.. that was the last therapy that Jake has had… and still no change… for better or for worse… those NB cells still just sit there… what are they doing?  No BODY knows???!!!!

So we keep wondering what to do next.. Jerre and I… what to do next?  Why are they just sitting there???  Did the MIBG therapy actually “stun” them?? Makes you wonder doesn’t it?  Jake continues to grow and the NB cells stay the same… 10 little spots in his bones ‘alive’ or MIBG avid as the professionals call it…

In the meantime, Jake runs, plays, in soccer, in baseball, raising chickens on the farm, playing with his pup, having adventures on our boats.. (one is in Toronto, one is in our parking lot that we tow to the beach…:)… enjoying summer camp… golf camp is coming up, possibly Hockey camp…visiting with his cousins… livin we are!

Just wanted everyone to know that we are okay and will always keep you posted on our Jake… and please keep the good vibes going… cause for today, it is working.

Oh, and P.S.  I hope everyone could live this way.. make every day feel like its the best day of your life…cause you don’t know what’s going to happen tomorrow… I hope everyone is enjoying their summer so far, xo Cath

To celebrate his birthday (which we were to have done last year for his 7th on June 7th..but couldn’t…) we went to Orlando and DISNEY!  It was an awesome trip!  In the end, all of Jake’s immediate Graham cousins came (my mom and dad, my brother’s family, my sister’s family) and we were all at Disney together for 3 hot, sunny days!  Great time.  Jerre, Jake and I got 10 days in total to also go to the beaches, gatorland, do some shopping and just be able to relax in the warmth of Orlando.  Very much needed and enjoyed.

We would like to personally thank Gord and Sheena Becker as they provided the connection to a lovely house for us to stay in Florida.

Before our trip, Jerre and I met with another member of the oncology team from Sick Kids Toronto to discuss the current PHASE trials that were available to Jake right now… to be honest, from my last post, Jerre and I are very much procrastinating on the next steps…as, unfortunately, none of them ‘feel’ right to give to Jake… they are such toxic suggestions that I go back to my initial thought of “why the hell would I want to stick that into my kids body???”  Seriously.   To give you an idea, one of the drugs is used for Acne… really, that’s all you guys have got?  After 35 years of research? and…Seriously?  Makes me sick… and Jerre and I are playing instead…Russian roulette with our kid’s life right now (we feel)…

When I say that, you realize that we feel we need to be doing something on the conventional medical side but can’t because it doesn’t make sence to us???  URGH…is all I can say right now…

So, we come to some comments that I will write on paper here to justify some of our thinking right now… Jake is so alive right now… seems…is…. so healthy right now…playing soccer, playing baseball, going to school… being a normal kid.  Honestly, and I know in my heart that he will be with us well over the next year when I state this…. but I would rather have him like this then being a chemo’ed up kid… weak, sick, etc.  You know what I’m saying???  

So, there are ways to monitor things in the meantime…we send a urine sample to Sick Kids that tests for protiens that secrete off of these cancel cells.  His samples are in the normal range right now… it’s not the best test (false positives, etc) but its something… as well we do blood work to montior bone marrow/blood production… again, I’m not 100% certain that helps either, for a potential heads up that the cancer is progressing but we hope to think it would be…

In the meantime we are doing some thing with the Naturalpath, keeping in mind that Jake takes a lot of natural supplements daily to help keep his immune system working for him, etc. but our Naturalpath has set up some further blood work test results to see how Jakes liver and kidneys are doing and a urine analysis for further detoxing of heavy chemicals that are in Jakes system still, etc.  Every little bit helps.

As well, Cedar Down Farms in Neustadt was very gracious in sponsoring Jake in our continued attempt to keep as many toxins out of his system by providing us with Organically grown fresh veggies for the summer months!  We start our pick up this Tuesday and I am very excited about that!

Talking about the area of Neustadt, AYTON folks put on an APPLE BLOSSOM festival while we were in Florida and unfortunately we missed it! They had a special event, a ROCK WALL competition to raise funds and all proceeds went towards Jake’s trust account.  We want to sincerely thank everyone’s continued support.  Jake was sorry he missed the opportunity to show off his climbing abilities but were told a lot of his friends had a lot of fun at it!

In that continued theme of going back to basics another one for us is our meat, mostly chicken that we eat these days… so we have decided to raise some for the summer!  Jake is very excited to be aquiring 30 birds/chicks this Monday… Jerre on the other hand is ‘city boy nervous’ but we shall have fun with them I’m sure!!! lol…(as if we need the extra work eh! But the concept and reasoning is there so we better do it right???)

So, from the outside, life is good right now.  Jake also got a drum set for his birthday, yup, dont go there… and at the Amish auction in Chesley yesterday (that has been a yearly ritual for us since we have been back up here to attend) Jake fell in love with a yearling miniature horse newly named ‘Spirit’ and yes I will end this post with the fact that I am a NEUROBLASTOMA CANCER KID’S MOM and I have the worst rubber arm you’ve ever seen!!!! So do not go there! LOL

Keeping the strong positive vibes going Jake’s way, xo Cath