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.

Lifes Changes

I am using my blog as a way of venting right now..... I know when we received the news that Joshs' tumour was low grade, we were very excited and thankful.
However, I don't think I realized that life, as we knew it, would never be the same. I know I have mentioned that we are falling back into our normal life but I find myself paying special attention to things that would never have fazed me before. Simple little things, like telling Josh to watch his step getting out of the truck cause there is snow on the driveway.. Keeping a watchful eye on him, his attitude, his health, his walking, his talking, his overall being.
The other night we were all sitting at the kitchen table playing a game, and Josh starting shaking his head and rubbing his eyes, then took his glasses off and rubbed them even harder. I asked him what the problem was, he said he couldn't see... "my eyes are open, but I couldn't see...." Is this a symptom? Was it just a fluke thing?
Tonight we were eating supper... he said he was having a hard time swallowing.... again it this a symptom? or is he getting a cold/flu?
I was reading on the Internet... (I know, I shouldn't, but I cant help myself) Symptoms of active brain stem tumors can be - Swallowing problems, or gag reflects problems.

So I find myself constantly being "aware".... Aware of everything that Josh does, says or doesn't say.
John and I were talking and I basically came to the conclusion that this is going to be our life now. Living from scan to scan and constantly praying that things out of the ordinary are nothing.
I know we could have it worse, and we truly are thankful that his tumor is low grade, but just knowing that it could change, grow, and our whole life could change again.....without any warning, has really scared me.
In my head, I know God has a plan and purpose for everything, but I would be lying if I didn't say that, some days I ask God, if He is sure that this was His plan. I keep thinking, Josh has already had so much in his life...is He sure that Josh had to have a tumor too. ( I don't mean to sound disrespectful.... but these are some of the feelings that I am having) Sometimes our hearts don't always follow our heads.
I am asking all of you for your prayers. First for Josh, that he will stay healthy and the tumor will not show any change. Also for our family, for peace and trust in the Lord, and for being able to cope with the changes.
And maybe one for Joshs' patience, as I am sure that the 101 questions everyday... might be driving him nuts.

Psalm 56:3 "When I am afraid, I will trust in you."

Psalm 62:8 "Trust in him at all times, O people; pour out your hearts to him, for God is our refuge. Selah"

Isaiah 12:2 "Surely God is my salvation; I will trust and not be afraid. The LORD, the LORD, is my strength and my song; he has become my salvation."

Psalm 112:7

 "He will have no fear of bad news; his heart is steadfast, trusting in the LORD"

New Appointments and update.

It has been a while since I last blogged, we are nicely and comfortably falling back into the routine of normal life. The appointments have slowed down, and the family has swung back into all its regular routines.
My last post, I eagerly shared the good news of Josh being able to play hockey again.... well he was cleared on the Monday and had a game on the Wednesday evening. He was very excited and pumped... I was a little more nervous. The other hockey parents have been very supportive through this time, and they were all very excited to see Josh back. He was one of the first to the door to enter the ice. When he stepped onto the ice, all the other parents cheered for him.... It brought tears to my eyes.  I found myself clenching Johns' arm whenever Josh was on the ice, and a sigh of relief when his shift was over. It was in the beginning of the second period when Josh got a little "aggressive" and ended up in the penalty box, at first I was a little shocked, but after a few seconds, I was "ok"  with it, it meant that he was "safe" for the next 2 minutes.
I am pretty confident that, the more he plays, the more I will be more comfortable with it.

On Sunday morning we arrived at church and received the weekly bulletin, I read the following:

" A young boy being cleared to play hockey is not a congregational news item which would normally be in our bulletin but when that young boy is Joshua Sharp, it is quite another thing. As we learned last week, the brain tumour which appeared so threatening just weeks ago is of a very "low grade" kind. Doctors have given him clearance to lead a normal life, including hockey. We are happy and thankful with Josh and his parents. May God continue to uphold you!"

We are so blessed to have a great Pastor and church family. They have all been so loving, kind and concerned.

We have been booked for several more appointments. We were booked to see Child Life, however it got cancelled due to the snow storm we had this week. (which was fine with me, I didn't want to venture on the roads that day). They will rebook this week.
Joshs' next MRI is booked for April 23rd at 8:45am.... as I went to the calendar to mark it down, I noticed that it is a Saturday. Josh thought this quite humorous, that Mom had to get up early on a Saturday- (for those of you who know me, you know, I love my Saturday mornings, cause I just LOVE my sleep) But I'm sure I can manage getting up for his appointment :)
We are also booked for Neurosurgery again for May 2. This is tentatively booked until we hear from oncology.

I will keep you all posted when we hear anything new.

We thank God for all the "routines" of life and all his blessings. And we thank all of you, for the support and prayers.
Please continue to pray that all news stays positive.

Neurosurgeon/Ophthalmology Appointment Jan 24 2011

Today we went to 2 appointments. First we saw our Ophthalmologist, he was happy to hear that Joshs headaches were getting fewer and fewer. We told him what John and I did, back in Dec we switched Joshs glasses back to his old prescription and it seems to be helping with the headaches, we really don't know if it has anything to do with it, but we thought we would try. Josh got new glasses back in the summer and he has never liked them, he would always look over the glasses or under, but never through them. He said they never "felt right". So we came to the conclusion that this might be contributing to his headaches. The doctor was fine with that, and wants to see Josh back in April.
After that appointment we went to our Neurosurgery Appt.
Josh was quite eager to show the doctor his headache journal, as the headaches are coming on average every 6-7 days now, rather then 3 or 4 per day.
Dr. B asked if we had seen neuro-oncology, which I replied "yes, we saw him last week......" After some discussion he asked what neuro-oncology had said regarding Josh, to which I replied, " they haven't contacted us yet...." He seemed quite confused. After a few seconds, I had realized that I was so confused, we haven't seen neuro-oncology yet, we saw the neurologist last week. I have realized now, that I really must pay attention to all these names, they seem to all sound alike and yet they all have different specialties.
Dr. B said, now that we have taken care of the "fluid issue" and headaches, now it is time to deal with the tumor. He is setting us up with Pediatric Neuro-Oncology, and another MRI has been set for April, actual date to be determined.
Josh was eager to find out whether he could play hockey again.... it was almost one of the first words out of his mouth. The doctor told Josh he would agree to let him, if he could do a few quick tests for him. Such as:
1. Gripping the drs fingers as hard as he could.
2. touch your nose and touch the drs finger--back and forth-- (as the dr moved his hand around)
3. Walk in a straight line, then back, heal to toe.
And then there was one more, and he told Josh if he passed this, he would let him play.
4. Take one big step forward and align your feet, then lift your arms, (mid body), palms up and close your eyes.

Josh did it... (John and I tried it later, when we got home, and its not as easy as it sounds-- I was actually wobbling)
So.... Dr. B wrote a letter to the hockey league saying Josh was "good to go".
The whole way back from the hospital, he kept reminding me not to lose the letter. Josh also asked today when we will see Dr. B again, to which we replied that we hope never..... Josh was confused by this, he really liked him, but we explained that it wasn't that we don't like him, its that we hope we never have "brain surgery" again. -- Josh still seemed puzzled by this, I am sure I will still get questions regarding this.



So, YES.... Josh is cleared for hockey!!!!! He is actually out right now with John and his coach getting some ice time before his game this Wednesday.

I think he is a little nervous about being back into it, but I am sure that will not last long.

As he was taping his stick tonight, he was taking "slap shots" in the kitchen and commentaries "he shoots, he SCORESSSSS and it his first game all season...." " and the crowd goes WILD!!!!!"

We truly feel blessed at this moment, to have several good appointments with positive news. We know this road, in our life, has only begun for us, whether it be treatments or simple monitoring for the future. We trust that God will be with us and keep us strong through this Life's Journey.




Deuteronomy 31:6   Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.

Matthew 11:28   "Come to me, all you who are weary and burdened, and I will give you rest"

Neurology Appt- Jan 18 2011

Today was our appt with Joshs' neurologist. We were given quite a bit of information today, I am still trying process and remember everything that was said. First we will start out, that we haven't seen this doctor in years.... and when we told his assistant about the last several months, it took him over an hour to look over everything and get his "homework" done before talking with us. Our appt was at 9am, didn't actually see the doctor til after 11am.....
We have a NAME!!!! The doctor actually told us what kind of tumor Josh has. It is a "Low Grade Astrocytomas" pay special attention to the "Low Grade" that is very important. Low grade means slow or no growth!!! How exciting is that????? He also said he is referring us to the cancer clinic. He told Josh not to be afraid of that word "cancer" they also deal with "just" tumors. We will go there to start monitoring the tumor. Most likely every 3 or 6 months MRI's. Low Grade brain tumors rarely metastasize (travel to other locations in the body) and usually have slow growth or even no growth. They however can change into high grade tumors, hence the monitoring through MRI's.
He is also referring Josh to "Child Life"-- Child Life is a profession that offers services to meet the psychosocial needs of children and youth in hospitals and health care settings. Josh will have a social worker to help him deal with the stresses, and someone to "vent" too.
We also discussed weening Josh off his seizure medication, this is a great surprise, he has been on meds since he was several weeks old. (little bit nervous about this one.... but he hasn't had a seizure in 6.5 years)
In just a month, Josh will be drug free....YEAHHH

It was a very good appointment today, and John and I are very pleased with all the info that we received. We thank God for this joyous news and pray that things will continue to go well.
GOD is GOOD!!!!

We thank all our friends and family for their prayers, and the love that surrounds us.

Poem- Must READ!!!!

THE HOLY ALPHABET
A lthough things are not perfect
B ecause of trial or pain
C ontinue in thanksgiving
D o not begin to blame
E ven when the times are hard
F ierce winds are bound to blow
G od is forever able
H old on to what you know
I magine life without His love
J oy would cease to be
K eep thanking Him for all the things
L ove imparts to thee
M ove out of "Camp Complaining"
N o weapon that is known
O n earth can yield the power
P raise can do alone
Q uit looking at the future
R edeem the time at hand
S tart every day with worship
T o "thank" is a command
U ntil we see Him coming
V ictorious in the sky
W e'll run the race with gratitude
X alting God most high
Y es, there'll be good times and yes some will be bad, but...
Z ion waits in glory...where none are ever sad!


After reading this poem, I decided it needed to be shared!!!

Frustrating Moments and Misunderstandings

As I sat here and reread my blog, I had so many emotions rushing through my head.......
So many sleepless nights and many tears shed.
One day particularly stands out to me, it was several days after Joshs' most recent surgery. The doctor had explained that they could not get a piece of the tumor due to the location-- brain stem. He had told us that he took a sample of "brain fluid" to be tested and someone would call us if there were concerns.
We waited and waited..... trust me, I am not the most patient person so I made many phone calls to the hospital to get results.
After 2 weeks of not hearing anything, it was like God just gave me a calmness that got me through the next couple of days.
Being the season that it was....hunting season. I am, what I kid, "a single mom". John was gone for the day and the all the boys were at school. I just couldn't take not knowing a second longer, so I called the hospital again....answering service...... so I hung and tried again. After 4 times of doing this, I finally got the receptionist. I had talked to her several times over the past 2.5 weeks.... she explained that she left a message for the doctor to call me, and her hands were tied. Well........... I just LOST it.
I told her, that you cant tell someone that there child has a brain tumor and expect us to just dismiss it. Then I even went on, to ask her if she had children..... I look back now and think that maybe it wasn't the wisest thing to do, but I was desperate.
She asked me to wait on hold and came back shortly to tell me that it was a glioma, and the test came back to be negative for cancer markers.
I didn't hear too much after that....I do remember her saying that the doctor would explain more to us. I first called John to tell him what I had heard. We were both so overjoyed. After speaking to John, I called my mom, you must know, besides my husband, my mom is my best friend, she is always there when I need her. Well I cried and I cried....... I kept saying "its not cancer" "its not cancer".
As I write this.... I keep feeling that emotion over and over again....."its not cancer"

We had an appointment with the doctor a week after hearing the "good" news. I was actually excited about going and hearing the words from his mouth. After looking Josh over and some routine "follow up" questions, we asked about the tumor. That is when he told us that we don't know what kind of tumor it is, we cant get a sample to test and that is the only "sure" way to know. I was very puzzled, so I asked about the fluid test. He then explained that they were testing to see if there was cancer in any other location of his body.

Well.... I must admit it was like being slapped in the face, when I was soo excited, then to be crushed again.
Now all the uncertainties again, the waiting again.... All I want are answers... I don't think that is too much to ask.

Many weeks and months have gone by now, and I find that most days I am blessed with that calmness again.
Don't get me wrong, I still have my emotional, frustrated days too.
But John and I are trying to dwell on, how WELL Josh is doing now, at this moment. We will deal with the road ahead when the time comes.

We know God is an awesome God, he has a plan and purpose for everything and everyone. We just pray that his plan is that Josh stays healthy for many more years.

Upcoming Appointments

Just a brief post to let you know when our upcoming appointments are:

January 18- Neurologist
January 24- Ophthalmology
January 24- Neurosurgeon

So far this is what has been booked.
We pray that these appts will go well, Josh is really hoping to be "cleared" for hockey as the playoffs start the end of this month, and he has only played 1 game all season. I keep trying to explain that there are more important things right now, but to a 12 yr old..... he doesn't think so. :)

Medical Technology-- Amazing!!!!

When I started my blog I felt, out of my comfort zone. But now that I have shared some of our life, I want to keep sharing. A very good friend of mine said: "Just think, you can share all these memories with Josh, when he is older and married." I pray that we will be able to share this together.
 As I have explained in my previous post, Josh was born with a very rare deformity. In 1998, the year he was born, we were told that there were only 14 known cases in the world with Encephalocraniocutaneous Lipomatosis- which I will often refer to as ECCL. (It took me a year to learn how to pronounce it- still have to look up the spelling every time).
Josh has endured much in his short life, he has had many hospital trips, surgeries, been poked and prodded. But if you know Josh at all, he has taken it all in stride. That is just the way he is. Just confirms what we believe: God knows ALL and plans ALL-- what I'm trying to say is, Josh can deal with all these stresses. John and I often think if it were one of our other children, I don't think they would cope the same way.
At the age of 4, Josh had already had several "corrective" plastic surgeries. He was getting to the age that he noticed that he looked different then the other children.
We had a GREAT plastic surgeon, he was always very good to and with Josh. At one of our many appointments he asked Josh how he was..... Josh paused..... then he quietly and shyly asked the doctor if he could get "new hair". Because of all the surgeries and the removal of the fatty tissue, Joshs' hair was not growing in the middle of his head. He had a small patch of hair at the front and nothing in the middle.
The surgeon explained that we could try "tissue expanders"..... of course, we had never heard of such a thing.
He explained that  they would cut open 3 separate spots in Joshs' head and insert 3 balloon-like expanders between his skin and the skull. They would be very small to start with, but we would go to the hospital on a weekly basis and get injections. So after talking it over and hearing if there were any risks. We decided to go ahead and get Josh "new hair".
The plan was to start as soon as possible, meaning we had surgery within the next month. We were hoping the whole process would be done by Joshs' 5th birthday. We diligently went to the hospital every week to get the injections, and the expanders grew and they grew.
Josh being the outgoing, carefree spirit that he is, didn't mind walking around with these balloons in his head. He often choose not to wear the hat when we went shopping, church, or to school.

I look back now, and think he is honestly, such a trooper, I am so proud of him and the way that he has dealt with his trials.When you are in that moment, you just do it, and don't really think about how well or not well it is going. But now I cant believe how strong he was, for being so little, he never complained about the hospital trips or the countless needles. Again, God was with us and kept us strong.
Over several months the expanders got to the size that the surgeon was quite satisfied that the next surgery would be a success. Josh was having surgery AGAIN, and only 1 week before his 5th birthday.
We were so excited!!! Josh was gonna have his "new hair" before his birthday, that is all he talked about for months.
The tissue expanders were removed, and it was a success. I remember walking into the recovery room and seeing Josh laying on the bed, all I could think was, his head is round again. I couldn't get over how round it was. It sounds kinda silly, but after looking at this "out of proportion"  head for months it was nice to see the roundness of his little head. The surgeon did a marvelous job. The hair line was moved up so the bald spot was no more.

I forgot to mention, that while they had Josh "under" they decided to remove the dermoid on his eyelid as well. You can see the incision on his eye on this picture.


This is just one of the many stories that I have regarding Joshs' life. I am sure, now that I have joined the blogging "world", I will remember more and more.

God has kept us strong through the years, and we depend on HIM to continue to do so.

Josh before ANY surgery

                                                                            Josh after fatty tissue removed.

Josh with his brothers, Jordan and Joey Now.

Background Story

John and I have been married for 13 wonderful years. We have been blessed with 3 busy boys,

and wouldn't change it for the world. When I say we have had 13 wonderful years, that doesn't necessarily mean we have not had our hard times, because like all people, we have had our share too. From little bumps and bruises, to losing a very loved brother, and now having our oldest son, Josh, being diagnosed with a brain tumor.

I will give you a brief history of our Josh. There were concerns right from my 35 week ultrasound. I will never forget the doctor telling us that his brain was not developing. He was born 2 weeks late, but the delivery went very well. When we first saw Josh, of course there is the natural love a parent has for their child. But there was also alot of concern..... Josh went through a lot of medical exams and tests, and was diagnosed with Encephalocraniocutaneous Lipomatosis. (google it some day- its quite interesting) The doctors informed us that he would never walk, talk or do any of the milestones that other children or people do. He had fatty tissue growing on the top of his head, and several dermoids growing on his eye and eyelid. (We often kid now, that he looked like someone from a star trek show or movie.)

Josh --a couple months old.

 When he was several weeks old he starting having seizures, which is enough to scare any  first time mom. We felt very overwhelmed with our first child, with all the dr appt, seizures and the people staring...you don't want me to start about the stares from ignorant people.. But God was with us and kept us strong.
With the help of the weekly visits from Landsdowne (local social workers for developmental delays in children) Josh started hitting his milestones, he was sitting, laughing, rolling..etc...... before we knew it he was walking and talking. The seizures were starting to be controlled with medication and he was becoming a "regular" healthy child.
Now Josh is 12. He is in grade 7 (modified), plays hockey, cant/wont shut him up. So much for the drs knowing........ He has always been our miracle baby. He has had 6 "plastics" surgeries to correct the fatty tissue and dermoids.

 We have had many good years with no medical concerns.
Early May 2010, Josh started complaining of having headaches... they were not constant, but were beginning to become consistent. I called our family dr to ask for an MRI to be booked, just to ease my mind. He had the MRI early July. When we heard no news, we thought "no news is good news". Days passed on, then weeks, months.
Early September, I received a phone call from one of Joshs' doctors, from when he was born. She is in the genetics department. They asked if we (our whole family) would take part in a study about ECCL- Enceph Lip. I asked what was involved, and she said it was just some simple blood tests. I told her I would agree to do it IF she would get a hold of the MRI that was done in July. She said that she would do that for me.
September 22 we all went down to McMaster to get the blood work done, we met with the doctor, she was so pleased to see Josh, and how well he was doing. After some routine questions about Josh, I asked her if she had a copy of the MRI, she left the room and came back quite quietly. She first started by saying that she hated being the one to tell us this, but she thought it best if Josh saw a Neurosurgeon. John and I were quite puzzled and demanded to know what they saw on the MRI. She said there seems to be a "blockage" in his brain. Not really registering what that could mean we went home and made some phone calls to alert the family. Sept 27 2010 we met with the neurosurgeon. He told us that Josh had a tumor. (my heart just stopped) you almost feel numb when you hear those words. I pray none of you will ever hear them.
The tumor is located on his brain stem and was blocking a ventricle. The brain fluid was not draining, causing pressure to build up, hence the headaches. Oct 8 2010, A day I will never forget. Josh went for a third ventricloscopy. (sp?) The surgeon drilled into Josh skull and poked an opening in the center of his brain to relieve the pressure of brain fluid. The surgery was 4 hours long, doesn't seem that bad, except when its your child laying there, and you have no idea how things are going. The time seemed to take forever.
The doctors warned us that he would be in ICU for 2 days, then probably in the ward for up to a week. (if there were no complications) I remember Dr. Baronia came got us from the waiting room and we were able to ride up the elevator with Josh, it was hard to see how he was at first, 3 nurses, bed and machines, doctors and John and I cramped into an elevator. The ICU nurses took him into his room and told us we had to wait til they had him set up. Dr. Baronia took John and I into another room and explained that the surgery went well, that he was not able to get a piece of the tumor because of the location. he did tell us that he saw the tumor. His words : "abnormal".
When we were able to go and see Josh, he was actually awake. He smiled at John and I and asked for a drink. He was sooo thirsty. He tried sitting up a bit and then all of a sudden-- he realized that something was different and weird..... he flung the sheet off and asked "what the heck is that?"....lol. He had a catheter.
He wanted it out... right then and there. John and I explained what it was and told him that it had to stay for a while. The rest of the day he would giggle every time he peed, " I'm peeing, right in front of you" or "check the bag mom, is it filling?"
Josh has always healed very well, and believe it or not... our brave guy was home from the hospital 2 days after surgery. Dr. Baronia said he has never seen a child go from ICU to home. But there was no holding him back, he had visitors, but forget staying in bed, he wanted to go downstairs, get food, drinks or go outside for a walk.

Our last MRI just before Christmas showed that the tumor has not grown at all, and the fluid is still draining well. Praise God!!! Josh is fully healed from his surgery and is eager to be able to play hockey and go sledding soon. The doctor has not signed a consent saying that Josh is "good" to play hockey yet, due to his ongoing headaches. We are now keeping a journal of all his headaches. Which seem to be getting less and less.
So now it is January 2011 and the appts are starting to fill up the calendar again. It was nice to get the Christmas season "off" and enjoy our time as a family.
We pray that the following tests will all have positive outcomes.