Most recent Doctors appointments

It has been a while since I last updated my blog.
Josh has had many months of good health and for that we are so grateful.
We recently had an appointment at MacMaster after his last MRI. We saw Joshs' neurosurgeon.
The results of his MRI were very encouraging once again.... NO GROWTH. It is great to hear those words and I don't think we will ever tire of it. We were also told that the second tumor that the doctors saw after our May MRI is actually indeed a lesion that is consistent with Joshs' syndrome. I have previously posted about Josh's syndrome- ECCL- short form for Encephalocraniocutaneous lipomatosis.
She also was very happy and surprised that Josh is not having seizures, another blessing to be thankful for.
The Doctor seemed quite happy to report that it was a lesion rather then a tumor, however it did not strike me to ask what the difference is......
I have googled "lesion" which they often report: tumor...??
I find this a little confusing, but we have another appointment in several days which I hope to clarify this.

I must admit, I do find that as time goes on... I am a little more stressed before getting the results of each MRI. This may sound strange, because Josh is not showing any real changes in behaviour, balance, sight...etc... but sometimes I feel that things have been too good... and then get nervous that something is going to happen, to change all that. It can be very overwhelming......

Josh's case has been transferred to the Neurology Oncology clinic which we will meet with in several days... we got home from this recent visit and about an hour later the phone rang.. it was MacMaster... the receptionist explained that she was from this clinic and they had just received the MRI results and wanted to see John and I... I explained that we had just got home from an appointment there.. we went through which Doctors we saw today, then she said that we still needed to come and see them...
My first instinct was FEAR... but after talking to John, he said they cant change their mind... they said NO GROWTH...its not like the scan changed after we left the hospital. So, now I am at peace again.

Josh is enjoying his hockey season, with 2 goals under his belt already. He just beams when he gets that goal... and the team jumps all over him... It is such a joy to see him out there again, because he enjoys it so much.

I will post any new news from upcoming appointments, but would like to thank everyone for their prayers, kind words and encouragement. We are very blessed to have great family and friends. And once again God has answered our prayers and we are so thankful for that.


Psalm 107:1
"Give thanks to the LORD, for he is good; his love endures forever."

Tail End of Summer

Summer is coming to an end, and I am finding that we are all getting ready for school to begin again. Unfortunately we were not able to take a vacation away from home this summer. And although the boys had some trips of there own, we find that they are starting to get "bored" or annoyed with each other quite quickly these days. It is nice to have days without routine but I always love getting back into it again.
"To every thing there is a season, and a time to every purpose under the heaven:"

Josh has had a busy summer with working for Grandpa, going to Grandma's trailer- with a friend, going golfing with Oma, having countless friends over swimming, and regular outdoor BBQ's.
 He is very nervous about starting Grade 8, he thinks it is going to be a very difficult year for himself, and finds that as the years go by, his friends are surpassing him more and more. We are so thankful that Josh is not a "proud" person, he is always quick to ask for help from his friends when he doesn't understand or cant read what is in front of him. And we are so blessed to have great kids in his class that know his situation and are so willing to help him.

A few things that we have noticed during the summer is, Josh has been tired more often, some days I would find him sleeping on the couch for a couple of hours during the day (very unusual).  He has also informed us that he is starting to get more headaches again, which we pray is nothing too serious. He has also had some clumsy falls this summer. (some, just tripping over his own feet). We don't know if these are things to be concerned about, but definitely something to mention to the doctors our next visit.
He also had an ear infection this summer, swimmers ear that developed into an infection. I was bringing him to the doctors to get his ear checked out, so we could get him on some antibiotics, as we were driving he asked me if it was possible that the tumors were growing and that is why his ear hurt. I was taken back by this question and told him that I KNEW it was just an ear infection, but he still doubted me until we heard it from the doctors mouth. I guess I never really thought about how much this is affecting Josh, he must have been  scared to have something wrong with him and not knowing what it was, and assume that it was his tumors growing.
He has stated to me on several occasions this summer that he thinks they (tumors) have grown. I ask him why he says that, to which he says, "I just know.... I can feel it"    I, again ask him to explain how he "knows/feels", but he doesn't know how to describe it to me.
How can you reassure your son that they are not growing, when we have no idea? I often just tell him, that they aren't growing.... secretly praying that I am right. I need to ease his mind, to reassure him that everything is fine.


Our next scan is not until November, which seems too far away........

Please pray for Josh, for strength and for peace. Pray that he will be fine at school, and get over the nervousness. Pray that we will be reassured in November that his tumors are not growing. And please also pray with thankfulness that he is doing remarkably well.
There are so many different trials in families we know right now, and we should never take for granted what we are blessed with, and give thanks ALWAYS.

There are so many things
We can be thankful for
Just look around and see
All the blessings of the Lord
Everything we have in life
Is given from above
To sustain us and to keep us
And to share God’s precious love
Blessings come in different ways
And sometimes can be missed
So thank the Lord who gave them
And for all that He is.

© By M.S.Lowndes

Summer Happenings

So, the summer is here and the heat is definitely strong. We are enjoying the summer life of no routine. I have been neglecting my blog, not for any particular reason, just with the busyness of work, kids, and to be truthful there is nothing medically going on with Josh right now. Which of course we are very thankful for.

Josh does have an appointment with his Optometrist  on Monday July 18, but this is just a routine visit. Dr. S will check behind his eye plates to see if there is any swelling. The last visit there was no visible swelling. This is always reassuring that the tumors are not growing, however it is difficult for the Doctor, because there is quite a bit of scar tissue on Joshs' eye- due to the dermoids being removed from his eye and being replaced with donor eye. Surgery that he had done several years ago.

 We planned a trip to Canada's Wonderland for the Monday just after school let out. (thanks to Jeff H for the discounted tickets :) ) The boys had such a wonderful day, we had planned to go with friends but that didn't pan out. - However it was nice to do a family day, with just the boys. We had great weather and enjoyed all the loops, twirls and pretzels that our stomachs could handle.

It is so nice to have special days and make memories.

I find that ever since we had heard that Josh was diagnosed with his brain tumors, I get my camera just a little bit more. To be truthful, I always used to be busy enjoying the moment and then kick myself later that I didnt remember my camera. ( I don't get that from a stranger, ask my mom) but now find that I will remember to grab it, don't hold me to anything, it is a work in progress..... 
 After our appointment with the Doctor on Monday, depending on what he says, we have no other appointments booked until November. We have a nice long stretch in between our appointments this time, cause Josh is doing so great, no growth in the last 2 MRI's... we pray that this continues. 

We hope and pray that you all have a happy, healthy and safe summer.
And thank you all for your continued prayers.

Psalm 13:5 But I trust in your unfailing love; my heart rejoices in your salvation.





And you can't go to Canada's Wonderland without getting a funnel cake :)





Mixed Good News

Yesterday we went to get the results of Joshs' MRI.... we got called into the Doctors office, and he had the scans on the computer.... he said "well..... there is no growth in the tumor.... however there is another tumor".... I almost fell over......Right away we started shooting questions... he said "wait... I want to check the previous scan..." we looked over the previous scan and sure enough there it was... 2 tumors. He quickly rushed us into another room.... as soon as we sat down, I said that I wanted to clarify what he had just said... " there are 2 tumors?" he replied yes... I don't know how they missed it on the previous scan, but after talking to the doctor, he said the good news is, neither one of them have grown in the last 3 months....
I know this is very good news, no change, no growth, that's what we had been praying for.... but Wednesday- as far as I knew, there was 1 tumor.... and now there are 2. Dr. B told us that there has been 2, but one was missed. But to me, this is news.... So I am trying to wrap my brain around the fact that this is good news.... but yet... am having a hard time doing it.
Dr. B, then went to say that we don't know what type of tumor this is.... whether it be the same type or even the 2 masses could be fused together and this is could be one tumor. We will never know unless we get in there... but we aren't going to go in there unless they grow or change.
He went over the risks of surgery again, and told us that this is not something we would take lightly, and a whole team of staff would be on board with it.
He called oncology while we were sitting with him, and told them the new scans were in, and they are going to call to book an appointment.
Josh's next MRI scan is going to be in 6 months, because they haven't grown in the last 2 scans.... but Dr. B told us to call if anything comes up, any unusual symptoms.
Josh was a little confused about what was happening, that we were talking about 2 tumors rather then one.... and we assured him that everything is good, cause they haven't changed. Now we just have to monitor 2 rather then 1. I'm sure it was a shock for him, as it was for John and I.

 We must rejoice in this news... there was no growth or change.
Josh is doing well.... and we have to continue to rejoice in that.... I was talking to family members and we said that it could have been so much worse... he could have told us there was growth and change and that Josh had to have surgery again... or start chemo .... but it didn't happen that way, and we thank God for that.

We continue to ask for your prayers that Josh will continue to do as well as he is. And we thank you all for your love, support and most importantly your prayers.


Ephesians 5:20- giving thanks always for all things to God the Father in the name of our Lord Jesus Christ,

Just a matter of fact.....

Well, here we are, in May.... cant believe how quickly the time goes by, soon school will be out and we will be enjoying a time with no routine or schedule. Do you find, that as you start to get older, time seems to go faster....
May 14- Josh will be a teenager.. WOW.... I can clearly remember just taking him home from the hospital.

So, hockey season is wrapped up again, and we have decided not to do summer sports this year, we moved into our "new" house last summer and now have an in ground pool, with slide and diving board, that should keep the boys occupied, along with street hockey, baseball, biking and maybe some camping this summer.

Josh is gearing up to do the word and deed bike-a-thon, my younger sister (Dot) has asked Josh to do it with her, and ever since she has mentioned it, we hear about it often. We haven't received the forms yet to get the sponsors, but if you know Josh at all... that will just not do..... So I quickly did up an excel "sponsor sheet", so Josh would be satisfied and he has gone out and started collecting sponsors... I think he has put 3 hrs into it, and has already gotten $250.00 in donations. When he puts his mind to something, that is the only thing on his mind.
He was canvassing the neighbors, and one just down the street asked him if we were the new people that moved in... Josh replied "yes we were" the neighbor than mentioned that he noticed that the boys played a lot of hockey on the street and asked if Josh liked hockey.. Josh- "ya, I play ice hockey too, but last season kinda sucked" neighbour-" oh, why is that?" Josh- " I missed more than half the season", neighbor- " oh, why did you miss half the season?" Josh- "oh.. I have a brain tumor and I had to have surgery" neighbor- "oh.... I am sorry to hear that" Josh-" that's alright, I went for an MRI last week and we get the results to see if it is growing on Thursday" neighbor-" well I will definitely keep you in my prayers" .......
Josh came home and told me the whole story, then was excited to tell me that he thought the neighbor was a Christian.
Josh is always a "just a matter of fact" type of kid... he says it the way it is.....
I should also mention, that neighbor gave Josh a nice big donation for the word and deed bike-a-thon. - I kinda feel sorry for the man, I'm sure when he started the conversation with Josh - he was not prepared to hear about Josh having a brain tumor.
Josh is also geared up to help in a "car wash for cancer" this summer. We met a couple at the hockey banquet that are doing a bike-a-thon for cancer, however the sign up was already closed and it was too late for Josh to enter, but I received an email from that couple just yesterday asking if we would like to help with the car wash, I told them we would love too- pending it not be on a Sunday. I will send a quick email out with details, its a great way to get the car clean and donate to cancer research.

So, we get the results of Joshs' MRI on Thursday... have you ever had it, when every second of the day you are quietly praying..... well I have had a lot of those days lately. We pray that there is no change at all..... waiting is hard. I don't know what else to say except that.... waiting is hard.

I will blog again when we receive the details of the MRI.

Please keep us in your prayers, with thanks

April is almost here.

March 23rd.... can hardly believe how fast the time is going. Josh has been medication free for almost a month (March 1). I find myself nervous some days thinking that he could have a seizure at any time, But so far all is well. Last Sunday morning he informed me on the way to church that he wasnt feeling well. So... like all mothers I found myself "planning" what I would do if he had a seizure in church, I quickly scan who is sitting around us, that could help me..... But he was FINE.
We have had 2 appointments with Child life this month, which the first one I was unable to make (I had the flu) but the 2nd one I was there. I am not included in Joshs sessions with these workers, they want him to open up to them, without the "pressure of hurting or scaring mom". After his last visit, I had a pow-wow with his worker, and she informed me that Josh is very worried about his mom :( Can you imagine, my 12 yr old is trying to protect me. He told her that he gets very nervous before surgeries and test, but he cant show it to me, cause Mom "gets upset and cries before my surgeries"  I felt just awful.... (and of course, cried) My son should not have to hide the way he is feeling to protect his mom. But it shows me how mature and grown up he is getting.  I have now promised myself to better hide my emotions, so that Josh doesnt have to protect me.
We are also working on Joshs' anger.... he seems to have a lot of anger built up, and we are trying to get him to verbally express the way he is feeling rather then slugging someone or destroying something.
These are things that will definitely take some time. We are scheduled to go to Child life every 2 weeks, which keeps us busy.

Josh is scheduled for another MRI in April, which seemed so far away, but sure enough will creep up quickly. We pray that the tumor has not changed or grown at all.
He is also booked to see his eye specialist, (maybe some new glasses in the near future) Josh is very hard on his glasses, and because his head is not proprtioned right, his glasses always sit awkwardly on his face.


Hockey season is wrapping up, which is nice (in one way) but sad another, we enjoy spending our saturdays sitting at the arena watching the boys play-- which they enjoy so much.

I forgot to mention..... JOSH GOT A GOAL!!!!
and I missed it :(  Joey had a game at the same time/ different arena, so John  did the big boys and I did Joey's game. I told John that it was probably a good thing that I wasnt there, cause I probably would have cried. (if you havent caught on yet.... I am a very emotional person) Josh was thrilled, as was his whole team, they are absolutely great with him.

We are all eagerly waiting for Spring to arrive, to start enjoying the outdoors. The boys love being outside riding bikes, playing catch, hockey and such.

We pray with thankful hearts that Josh, and ourselves, are all doing as well as we are. We continue to pray that Josh stays healthy and that there are no changes in the tumor or seizures, Also that Josh may feel that he can open up to us (John and Myself) and his workers, that he doesnt have all these emotions and feelings bottled up. We thank all of you for your prayers and constant concern.

1 Thessalonians 5: 16-18 – "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."

Random Winter Pictures

I thought I would post some random winter pictures of the boys.

My boys LOVE hockey, they play it year round. In the summer it is street hockey and in the winter, they all play in a league and any other time they can.
As most of you with children know, all children have different personalities.
Jordan is our middle child, he is our loving, sensitive child. He is also our little prankster. He loves to make people laugh, and reminds me of my loving brother- Dan, more and more everyday.
Joey is our youngest, and yes, you can tell..... he loves his "mommy time" and still crawls in bed with me every morning. He loves to cuddle, even though he is 9. Joey is also our little player- when we cant find Joey, he is usually quietly playing in his room.
And then there is Josh..... what can I say about Josh..... He loves schedule and routine. If you mention to him that we are going out.... we will hear about it, til we leave. John and I have a saying about Josh, when he is bored, he is TROUBLE!!! Josh is a very hard worker, he is the first one to pitch in with house work, or yard work. But he is also the first one to start pestering.... that's why it is very important to keep him busy. He rarely watches TV or movies, he would rather be outside or playing a game with the whole family.

We have been blessed with 3 boys, each their own personalities. What a blessing children are.

Psalm 127:3
Children are a gift from the Lord; they are a reward from him.