What Interim Maintenance II looks like

I have just realized that I haven’t written much about Joel’s current set of treatments (Interim Maintenance II).  He has had a nice break from being pummeled with chemicals.  First he was delayed two and a half weeks because of the clot and his low blood counts.  Then on August 19^th he only got half his chemo.  They decided to skip that dose of Peg-Asparagines and the spinal completely and they will not be making them up at a later day.   This has allowed Joel’s counts to recover very nicely which is good because he is now fighting a cough.

Joel started treatment on Friday, August 19^th.  We had a good long chat with Dr. David.  We hung out in the teen lounge with S____ who was getting his very last spinal and his huge extended family.  He only has one more month of Maintenance treatment and then his family is planning a huge celebration party.  It was nice to see someone who is almost at the end of this journey.  Just as we were leaving we ran into N____ and his family.  He has just had a relapse and neither Joel nor I recognized him at first.  We had lived at Ronald MacDonald House with their family all thru Christmas and the spring.  The last time we had seen N_____ he was in remissions and was going home for good.  It broke my heart and I still don’t know how to process the extremes of that day.

This set of treatment takes about 58 days and Joel will be getting increasing doses of methotrexate every 10 days as long as his counts don’t get too low.  If the counts start to drop, he will still get the methotrexate treatment on the designated days but it will stay at a consistent dose and not be increased.  He will also be getting a dose of vincristine on those days.  On September 8^th he will have another CT scan and if everything looks good then he will get the Peg-asparagines on the 9^th.  On the 28^th they will also do a spinal along with the regular chemo.  On October 8^th he will get the last escalating dose of Methotrexate and a dose of vincristine in Kelowna.  Then he gets a 15-day break until he starts Delayed Intensification II Therapy on October 24^th or later if his counts need longer to recover.  There is no oral chemo during these next few weeks, just the septra every Tuesday, Wednesday and Thursday.

Today he has gone to Kelowna where he is getting methotrexate and vincristine.  He will come home and take a few medications to help him deal with the side effects.  Hopefully he will sleep it all off over the next day or two and then he will have another week of fun at home with family and friends.  We are hoping to check out the fair on Wednesday but Joel has already said that he is NOT going on any rides.

I refilled Joel’s enoxaparin this week.  It seems funny to me but the price of the prescriptions seems to change every time I get them filled.  This time the total was only $680.40.  Fair Pharmacare paid $ 471.94, Blue Cross paid $207.46 and we paid $1.00.  Last time the total was $730.40.   Fair Pharmacare paid $105.79, Blue Cross paid $622.61 and we paid $2.00.  I don’t have a clue how it all works, I am just very thankful for the medical coverage that we get.

All the chemo is fully covered by medical, which I have learned is a very good thing. Joel often gets four separate types of chemo in one day, along with daily oral chemo and sometimes he has to go in up to 4 days a week for chemo treatments.  Some comes in needles to be pushed in to muscle or spinal fluid.  Sometimes it comes in bags and gets attached to his port so that it can flow directly into his heart.  It often comes in small bags, some in huge bags; some need to be followed up by lots of IV fluids. Most chemo is a clear fluid; some is glow in the dark yellow, some red, blue, green, even purple.  I do not know the cost of most but I have been told that the purple one cost a quarter of a million dollars per dose.  We tease Joel that when this is all said and done, he will be worth a fortune.  He is just not quite sure how to market it yet.

Boys and their toys

First, Joel is safely back from camp and he had a great time.  He even gave himself several of his needles.  He went for blood work Friday and all his counts were good so he goes for chemo in Vernon on Monday.  He just gets Vincristine and  an escalating dose of Methotrexate. 

Tonight he is going to a birthday party but his counts are up so I am okay with it.

Adam and Ari had jobs this summer doing chores at some of the neighbours.   They saved up all their hard earned cash and bought these….

After the first hit there were a few tears but they didn't last long.  It was too much fun and the pain was worth it. 

My Mennonite pacifist upbringing does not know what to think of it all.

  

This is Grants truck.  It doesn't want to go up the mountain to get firewood anymore.  It refuses.  It doesn't have an emergency brake either, if you want to park on a hill you have to jam a piece of wood behind the tire.

Grants dad just bought himself a new truck and he wanted to give his old truck to Grant.  Grant went and picked it up this past week.

Here is Grants new truck.

It has lots of bling.

Can you read what the sticker says?

Grant was horrified and said that I was not allowed to drive it until that came off.  He also said he couldn't drive it to church with that on it.

This is what it says now.

Once again, my Mennonite upbringing does not know what to thing of all that shiny bling.

I am in conflict here.

On a completely different note, this is one of three fauns that are living in our field.  Every morning they are in the garden feasting on the blueberry and strawberry plants.  They are so cute so I don't mind sharing.

Joel at camp and me going crazy

Joel has been waiting all summer for his counts to be up and to be feeling well enough to go hang out at camp with his friends.  Last week he started eating again and his counts finally went up.  On Friday he asked Dr. Dix if he could go work at camp and David said yes.
Everyday my alarm goes off at 9:00 a.m. and 9:00 p.m. and I don't have Joel here to stick with a needle.  I am in the habit of cooking lots of fattening food but I have no Joel here to force feed.
I sent him off with his needles and syringes, his vitamins, his ondansetron (for nausea), his septra (to prevent pneumonia)  but I drew the line at sending his morphine.  I figured if he needed the morphine then he needed to be at home.
And now I sit at home….. I am happy he is at camp, where he wants to be, with his friends.  I am thinking of driving out and checking on him….. every morning, mid-morning, afternoon, mid-afternoon, evening and night…..everyday…. all day.  Do you think he would be embarrassed if I did?  Do you think he would mind if I just went out to check his temperature?  How about if I go set up my tent and spend the week at camp with him?  I think someone needs to take my keys away and I need to find a project.

What 3 days can do

Joel's counts have come up.  Actually they have skyrocketed.  On Monday Joel's ANC was at .4 and today it is at 1.8.  So, Joel is heading down to Vancouver today with me and Adam is coming along for the ride.  I think they are only giving Joel two kinds of chemo instead of 4.  He will get the Vincristine and the Methotrexate tomorrow morning and then we will meet with Dr. Dix to see when he will get the spinal methotrexate and the peg-aspariginase.  

This and That

I took Joel in for blood work this morning and it looks like his counts are still too low for starting treatment tomorrow so he gets to stay home for a few more days.  His ANC was at .4 and it needs to be at least .75, but all his other counts were fine.  We will go for blood work again on Thursday to see if he can start chemo again on Friday.  I am glad that we get to keep him home for a little longer because he is just starting to eat normally again (three meals a day) and he hasn't thrown up since Saturday night so maybe I can get a little weight back on him.  This week I made him spaghetti dinner, beef stroganoff, burgers, salmon, peach upside down cake and lots of apple pie.  He is not needing the morphine anymore and he only uses the anti-nausea medication once in a while. 


I am learning how to give Joel his needles because he does not like to do it himself.  Joel is taking advantage of me though and giving me puppy eyes and asking for his hearts desire whenever I come close with the needle.  I will have to become a hard, cold and unfeeling mother or else I am afraid that I will lose my good judgement, end up poor and without any scruples.  I think I am doing something right though because he says that when I give him the needles it hurts less than when Grant gives them…… I have a few tricks up my sleeve.  I find that I hold my breath while I give him the shot so I have to do it quickly before I pass out.  My devious plan is to have Joel prefer me giving the needles so that I can go down to Vancouver with him all the time.


We had a quick chat with Joel's clinic nurse this morning and she said that Joel would not be getting the Peg-Aspariginase and the spinal chemo this time around.  He will just get the Vincristine and Methotrexate thru the port.  I guess the thinking is that if his brain is irritated and enflamed, then the chemo going into the spinal fluid and brain would just make the problem worse (like putting vinegar or lemon juice on an open wound).  He will have to make up those treatments at some point but I guess we will learn more next time we see Dr. Dix.  There is some concern that Joel's treatment is being delayed too long but hopefully his counts will come back up quickly. Exercise is supposed to bring the ANC counts up so I will have him doing laps everyday.


I have been learning lots about clots and strokes this past week.  Joel's clot is in the Sinus Venous Thrombosis, the vein running along the top center part of the brain.  Blood tends to run through that vein slower and that is why that area is more susceptible to clots.  The headache was caused by irritation and pressure from the clot and blood flow.  The assumption is that the second stroke (or stroke symptoms) was maybe caused by small bits of the clot breaking off.  Hopefully the blood thinner (enoxaparin) will have caused the clot to become inactive and stable by now.  Strokes can be caused by bleeding in the brain but the CAT-scan showed that Joel did not have any.  Strokes are also much more destructive and cause permanent brain damage if they happen in an artery where they cut off oxygen to the brain, rather than if they happen in a vein.  When Joel had the first stroke on August 2nd, he was scared.  That was the first time during all of this that I saw fear in his face.  He has been miserable but he does not complain.   When Brianna was on her way to visit Joel in the hospital she sent me the following text - "Okay we are getting close.  I'll text you as soon as we are parked.  How is Joel?  Does he look like himself?"  That broke my heart.  Joel had her comfortable, relieved and laughing in no time.  The second time that his body went numb on the left side, he was chatting with the oncologist on the phone, laughing and making jokes.


This week Joel said the old men have nothing on him…. he has had arthritis, strokes, pain, weakness, baldness… just to name a few.  Sometimes he has to drink Boost and sometimes when he walks, he even looks like an old man.  I love you Joel!

What am I to do with you Joel?

Joel had another CT-scan Monday at noon and then it was off to clinic to have blood-work done.  The scan showed that the clot had not gotten any bigger.  Doctor Dix was not in on Monday so we scheduled a meeting for Tuesday morning.  Joel got out of clinic and wanted to go straight to the ocean.  You can see in the pictures that he still has his blue hospital band on his wrist.

I was in my happy place.

 I forgot to pack shorts and a bathing suit this time around.

This is not the latest trend, it is the only patch of hair that has started growing back.  The funny thing is that there are several teenage guys all at the same stage in treatment and they are all sporting the same hairdo.

Adam and Ari entertained themselves the way they always do. 

Tuesday morning we met with Dr. Dix.  He asked Joel if he had any questions and Joel's biggest concern after having a stroke was "can I still drive?" Really???  I do not understand the teenage brain.  Joel's counts had dropped again so they were not able to start chemo this week.  He has lost over 10 pounds in the last week so everyone felt it was better for Joel just to go home to eat and rest.  It was a rare reaction that Joel had but it was not unheard of.  Since 1997, of all the kids who were getting treatment for cancer in Vancouver Hospital,  only 6 of them have had the same reaction that Joel had last week.  Joel's oncologist, Dr. Dix was part of a research group who studied those 6 kids and did long term follow up.  All of the 6 made a full recovery with no long term damage.  Joel will have to have shots of blood thinner twice a day for the next three months and he has to be careful not to do anything that will cause bleeding.  He had given himself one shot but prefers for someone else to give them to him instead.  Grant usually does it but I gave him the shot last night…… it was not pretty and I poked him twice but he was very gracious and forgave me.  He even said that he will let me keep practicing.  His legs are looking very interesting now, covered in polka-dots.  After three months, Joel will get another CT-scan to see how the clot has changed and they will decide whether or not he needs to stay on the blood thinner for an additional three months. 

Joel was looking forward to being at home and sleeping in his own bed.  He spent some time playing his guitar, ate some supper, laid on the couch and watched Corner Gas with Adam and Ari.  He was heading off to bed when his left side went numb again.  Grant called Children's Hospital and then he and Joel headed off to the hospital in Kelowna because they have a neurologist there.  The numbness went away but then Joel started throwing up again.  So far I haven't heard much.  They did another CT scan and it looks like the clot has gotten smaller (a good thing).  They didn't find any bleeding (another good thing)  but are thinking of doing an MRI just to see if they are missing anything.  Grant said he would phone if there were any problems and I haven't heard from him (again a good thing).  Needless to say, I haven't gotten much sleep (not a good thing). 

Something to celebrate

It was a beautiful and perfect day.  It was decided at 9:00 am that Joel and Grant would be able to come out.  Uncle Rick was kind enough to drive out to Vancouver and pick them up.  It made Brianna's day.  It was a day full of happy tears.

Grant walked Brianna aisle.

The groom cried.

I witnessed the whole event.

 Brianna cried when she saw Joel.

Joel with the most beautiful single ladies in attendance.

Brianna had the best bridesmaids ever.

 I got to do the father/daughter dance and it made Brianna cry again.

 Adam was way too cool to dance.

 Ari couldn't wait to show off his moves.

 Cake was smeared. 

I have no idea what this was about but it makes me laugh.

 Uncle Stephen played the part of "dad" and made everyone laugh.

 Thank you Brianna and Shane for giving us something to celebrate and things to look forward to.

Joel gets to come home

Brianna is now married.  It was a beautiful wedding, very busy and a bit of a blur but I have over 400 pictures of the day on my camera.  I will post some when I get home.
Joel gave himself his needle this morning.  It took him about 15 minutes and we were all laughing so hard and he was shaking.  It took him two pokes, the first one he got into his leg but accidentally pulled it right back out.  I am sure that in no time he will be like Rambo and able to stitch up all his own wounds.
Joel had another CAT-scan this morning.  His blood counts have all dropped so he will not be starting chemo this week.  We will meet with Dr. Dix in the morning to get the results of the scan and a plan for the rest of the chemo and then Joel gets to go home for a week.  He is a happy boy.

A chip on my shoulder

So, this round of chemo was supposed to be my turn to come down with Joel.  But somehow Grant weaseled his way into coming down with Joel.  He got to be a part of Joel's first ambulance ride to the airport and then they got to fly down on a super cool fast jet at one in the morning.  I guess the ocean and city lights looked amazing.  I got to drive down in the heat of the day with a van full of kids.  Life just doesn't seem fair.
Anyway I am down here now and visiting with Joel and he is doing very well.  The numbness on the left side of his body is gone.  He is getting a couple of needles in the legs everyday which is supposed to make the clot not grow any bigger and then his body should be able to get rid of the clot on its own without any extreme measures being needed.   I don't know yet how long he will have to get the shots for but one of the nurses said she would teach him how to give them to himself and then he could just do it himself at home.  He DOES NOT want to give himself shots.
The clot was a side effect from the PEG-aspariginase (the two needles he gets in the leg).  He was due for another dose of it on Friday but I'm not sure how that is going to work now.  He is actually supposed to get 4 more doses of it through out the next few months but we are just waiting to hear back from all the specialist about how this will affect the rest of his treatments.
Chemo depletes the body of certain nutrients and minerals and the PEG-Aspariginase has depleted Joel's body of what ever it is that keeps the blood from forming clots.  The pediatrician did tell me what the nutrient was but I did not write it down and I have forgotten already.
Anyway, I have lots of questions to ask the oncologist tomorrow.  I think we are supposed to meet with the radiologist too so that he can explain the results of the first CAT scan and then I think they will be doing another CAT scan in a few days. 
Joel is tired and his head still hurts so he is still getting a little morphine.  He tends to be way too stoic and doesn't like to take any extra medication.  He is still very nauseated and is not eating yet.  They have been checking him lots for any neurological damage and I don't think they are finding any problems.  Right now things all look really good.  It is just another waiting game.

please pray

Grant took Joel back to emergency last night and they were flown to Vancouver in the middle of the night.  The boys and I are following this morning.  He was still throwing everything up and his head still hurt yesterday.  Then the left side of his body went numb.  They did a CAT scan and found a blood clot in his brain.  So, I guess he was having a stroke.  When I went to see him last night he was joking and teasing me about my bad sense of direction, he was alert and his cognitive functions were all fine.  He was on lots of morphine and feeling really good.  They have given him two kinds of medication that should dissolve the clot.  Grant said he would only phone me if there was bad news and he hasn't called yet.

Hoping and Praying

So after a few days of Joel eating less and less, feeling increasingly more tired and weak, and then 24 hours of throwing up and not being able to keep anything down, Grant took Joel to emergency where he is now being given IV fluids and anti-nausea medication.  We are hoping and praying that Joel starts to feel better soon and that we can all be at Brianna's wedding this weekend.