Getting Ready for Christmas!

December 16th, 2013

The last couple of weeks have been spent getting ready for Christmas.  We have been busy baking, shopping and wrapping gifts.  You have enjoyed helping out as well as keeping me busy when you have been left alone for too long!  We have given up on shopping now that the malls are really crowed but we are done for the most part.  As for Santa, we made it to the mall on a Tuesday night, in hopes that it wouldn't be too busy, and we lucked out as there was hardly a crowd.  You were excited to see Santa and had no hesitation when it came to sitting on his knee.  You informed him that you would like a "real" Zamboni for Christmas to use on the rink in the backyard.  Lol...we will have to see about that!!

Our plans for Christmas are pretty simple.  We are sticking around here so we are close to our hospital, just in case anything happens.  We are still hoping for a phone call informing us of a cancellation and the chance to get your "tubes" out early.  Nevertheless, we continue with all things Christmas and thankful we are all together this year.

The last couple of days have been nice outside so we have taken advantage of that and played outside in the yard as well as the park.  Your dad has the ice rink finished so we have been encouraging you to try skating but you only last a couple of minutes and you want off.  I think you enjoy shoveling the snow all over the back yard more than skating!!

As we count down the days to Christmas I am overwhelmed by joy knowing how far we have come this year.  We prayed and hoped that we would be home for Christmas and we are not only home but know that you are healthy.  I definitely could not have asked for anything more this Christmas then the health of my family.

Love you to the moon and back,

Mom

Best News Ever!!

 

And the results are in...

On Wednesday we returned to Calgary to meet with Dr. Anderson, our Oncologist, to go over your tests results from the previous week. We had waited a long time to hear what the tests were going to stay. We prayed that you would still be in remission and we would not have to try a new treatment plan. After an agonizing long wait we heard what we needed to hear, you are in remission and all your tests came back clear and no signs of relapse!!! I was so overjoyed and emotional knowing that for right know the cancer cells are completely gone and we can start to concentrate on what the future will bring. I sit here trying to type the feeling I have and the relief I feel knowing that you are no longer sick, but I am unable to find the right words. I was happy to spread the good news to friends and family and many tears of joy were shed by all!!

We also discussed what was next, with Dr. Anderson, now that you are finished chemo and are in remission. He explained that your treatment was very intense and the type of Leukemia you had was very aggressive. Therefore, your body will take at least 6 months to fully recover and for the normal cells to return to normal levels. These means keeping to our "bubble" and avoiding places with a lot of sick people or germs. This is going to be tough since you like to get out and I do too, but we will find things to do at home. It will be nice when the weather is better and we can go outside or do activities in an open place.

Your plan for the next year is that you will have doctor's appointment every month, with Dr. Anderson, for a check up and blood work. However he is trying to contact Dr. Foulston, here in Medicine Hat, and see if she could do your check ups for 2 months and then we would go to Calgary for the third visit. This would save a lot of trips to Calgary, particularly helpful during the winter months. After months 3, 6 and 12, when you come for your doctor's visit in Calgary, you will also need to have an MRI, bone marrow aspiration and biopsy, ultrasound and x-ray. These means in the next year you will have these tests done 4 times. This is to keep a close watch for any abnormal cells or masses. Your cancer is so aggressive that the chance of the cancer coming back is higher during your first year in remission. So, as relieved as we are now, I am sure that we will still have some anxiety and fear of the unknown during this next year. We can take a deep breath now, but it is always in the back of my minds that this disease can make a quick come back. We all struggle with the ways in which this disease could effect the rest of your life; worrying more then others about blood work, being tired or lumps and bruises. I know this will impact your life forever and I would do anything to reverse it. I just wish it was all over, I wish you didn't have to have blood work every month, I wish that you didn't have to see your Oncologist until you are 18. I will always look for warning signs...when will a fever just be a fever? Do you have low energy just because you are run down or is the cancer back? I really hate cancer, I hate it so much!!   

But there is another side, you are a SURVIVOR! And, by the age of just 3 you have endured more then others 10 times your age and proven your strength and determination.  You have faced more adversity with very little understanding of what was going on, you just trusted us to care for you and showed the courage and determination we asked of you.  As a family, we refused to let this disease break us, we bound together even when we were apart.  I can't say we have 3 kids that never fight, but you see each other in a new light and I think you watching each other with tinted glasses.  Life has a different glow and sometimes you know its just more important we are together again.

News on your Broviac is that the next available appointment is January 20, 2014. This really sucks because you don't need your lines for anything now that you are done chemo, but the surgical wait list is so long. Your Broviac is a liability as it is a major source of infection, which is still dangerous with your low counts. I guess we will continue to check your lines every hour of the day for at least another month and have our emergency kit with us at all times. I hope that there is a cancellation and we are are able to get your line out before Christmas. If not, we can deal with it and know that there is actually an end in sight.

I should also mention that we are not in the clear when it comes to fevers. Your body is still recovering so if you run a fever longer than an hour we still need to go into the hospital instead of treating you at home. The process of taking blood cultures and treat it each symptom appropriately before it becomes something bigger. You continue to be on antibiotics for the next 6 months to help prevent major infection such as pneumonia, as your body still has a hard time defending itself.

Right now we will enjoy the holiday times together and be grateful that we can all be together for some of our favorite holiday traditions such as the Holiday train, Santa visits, Tree of Hope, Christmas baking and shopping for your siblings. We have so much to be thankful for; being together is the best present I could ever ask for!

Love you buddy,

Mom and Dad

The waiting game...

Nov. 24
Sunday
Home

It has been awhile since my last update and I am trying to commit to at least once a week, but these days I am falling behind :(

The biggest update is that on Thursday we were at Children's Hospital for a variety of important tests. A MRI, bone marrow aspiration and biopsy as well as lumbar puncture were done to you while under sedation. You did very well and woke up a little grumpy, but within 20 minutes you were in a good enough mood to go for an ultrasound. Your dad and I were so proud of you, you are such a little trooper. The purpose of these test results are to tell us that there are no more cancer cells, which would mean you were completely cancer free. We will get the results on Wednesday and the wait is killing us. I do play in my head only good news and pray for the results we want but I also know I need to be prepared for unexpected news. I don't actually know if I can be prepared for any other news then the fact that the cancer is gone. It has been a lot of sleepless nights between your dad and I, Wednesday cannot come fast enough. As well as the test results, you will also have Echo, EKG and chest x-Ray on Wednesday to finish off your tests.

I almost forgot but on Wednesday we will have a consultation with the surgeon who will hopefully remove your central line (Broviac). As long your results are good we can proceed with the removal of your Broviac. I honestly cannot wait and I pray that it can happen before Christmas. You are so limited in your activities and it keeps your dad and I on high alert no matter what you are doing. Your locks are becoming weak and therefore opening up regularly, even with them taped.  With your Broviac removed we can finally take you swimming, skating and even have a bath.

At home you have been a bundle of energy, which is great....I think! We have really tried to get back to routine as well as expectations. You are having a difficult time with some expectations and have learned that consequences are not always easy to understand. We are coping and all adjusting.
I want you to know, you have many amazing people praying and cheering you on. This week we need all the prayers and positive thoughts as we get the long awaited results. No matter what we will continue to fight on with your army behind us.
Love you to the moon and back,
Mom

November 9th, 2013

Saturday
Home

I need to post a quick update to let you know that you are back at home.  After receiving the news that your cultures were negative you were able to head home.  So, you just had a fever, probably brought on by a cough that you developed last weekend.  Something that would have been "normal" last fall, but must be addressed at the hospital now.  We are happy that there was no infection and your counts have started to climb back up again this week.

We have stayed low key for most of the week just to make sure your cough didn't develop into anything else.  With your counts being "high" for you we are going to try to go to Brooks and watch Abbi's first Ringette tournament.  I am very nervous taking you away from Medicine Hat and your home, but we don't want to stay in your bubble forever.  If anything happens we are only an hour away and there is a hospital in Brooks if we need it. 

You tests have all been scheduled and will take place on Nov. 21 and 27.  It is very hard being patient and waiting for these dates to get here.  We just want to know the results so we can start the next chapter in this journey. 

I will post some pics from the last month!

Love you to the moon and back,

Mom

November 4th, 2013

Monday
MHRH / Home
Weight: 15 Kg
Nurses: Shelly / Shiela

 We have had a great couple of weeks.  We did not see your counts drop too low and we have been able to avoid any blood transfusions.  You were able to enjoy Halloween and couldn't get enough of it.  You ask everyday if we can go Trick or Treating again!

On early Sunday morning you developed a cough and had trouble breathing.  We were able to get you breathing better with the humidifier and the next day you seemed back to your old self again.  However, yesterday at around 3, I noticed you were warm and discovered a mild fever.  We continued to monitor it and it did spike, which required a call to Oncology in Calgary and then an admit to Pediatrics in Medicine Hat.  After your CBC, we noticed your WBC had dropped a bit since Thursday and therefore you needed to be put on antibiotics and then blood was taken to test for cultures.  Your fever did break, later Sunday night and this morning you are full of energy.  Your CBC this morning shows all your counts going up, which is a great sign.  They are allowing a day pass, in between your antibiotics, so you can go home.  This is good news because you eat and rest a lot better at home.  We will have to wait until tomorrow night to get results back on your blood cultures.  I am hoping that the fever was due to your cold, which would be just a normal thing for any healthy 3 year old boy, however with your immune system we needed to be admitted just in case and blood work done up.

We are so close to the end.  Your dad and I were really hoping that we didn't need another hospital stay but hopefully your results will be negative and you can be in your own bed by tomorrow night. 

Love Mom

October 25th, 2013

Friday
Home
Weight: 15 Kg

Well, we are all home!! In fact, you and dad came back home on Monday, after receiving your last chemo treatment at 2:45 am, Monday morning.  It was celebrated with a song and cheers from your nurses, even if you didn't want to be a part of it, it was exciting for your dad and I.  7 months ago I couldn't even fathom this point in your journey, but we all made it and more importantly you fought your way through it.  You are a total champion and proved to dad and I that you have a inner ninja inside of you and when times were tough you continued to be strong.   I know that your future is so big and bright and with your strength you will be able to over come anything!!  You make your dad and I so proud!!

Now that we are home we still need to get regular CBC's done to keep tabs on your counts.  You had blood work on Wed and today and so far you have only dropped a little.  I am sure next week you will be at your lowest and we will possibly need a transfusion.  I pray that you are able to stay healthy during this next week, especially since there is so much sickness around you.

So, what's next?  Your primary nurse is working on scheduling a multitude of test for possibly the middle of November, once your counts have fully recovered.  You will require sedation for many of the tests so we requested that they be scheduled back to back, if possible, so you would only require one sedation.  After the tests, it will be about 2 weeks until we can go back to Calgary and receive the results.  Waiting right now is a killer.  I want to know right now what the results are, we have come so far already and I just want to know that we can move forward.  With positive news, we can then get your central line (Broviac) removed, which will make life a lot easier for you.  It will be nice not having to check your locks every hour, or remind you every half and hour to watch your lines and most importantly allowing you to participate in activities, like swimming, which we haven't done since Feb.  So I guess we wait, patiently.

October 20th, 2013

Sunday
Unit 1
Weight: 14.9 Kg
Nurses: Angie/Makayla

Just a short post with a picture. We have waited so long for this day and now it is finally here!!

Love Mom

The Last Dance

October 17, 2013

Unit 1 Room 1112 (new one for us)
Weight 15.4 Kg
Nurse: Lauren
ANC: 2500

That's right,  we have made it back to hospital on the 16th of October to start our final round of Chemo and so far you have slept though every treatment this round.  Your mom, our nurse and doctor were all caught off guard when your counts had recovered on Tuesday; the call did not come in till after 4 so the race was on to be ready.  However, coming this early also means we are on isolation, you developed a runny nose over the weekend, which is not the usual clear stuff.  No suprise as this month you stubbed your toe resulting in a fever and 3 nights in hospital, then you got your hand slammed in van door meaning a ER visit and now as I sit here and type this you have spiked a fever.  You don't want to just ride things out peacefully.

The main thing we are focusing on is that in about a month from now you should be done all your tests and your lines should be out, that is the plan.  Our primary nurse hopes to book a sequence of exams (Bone Scan, MRI, X-rays, Bone Marrow Aspiration and Marrow Biopsy, EKG and Echo cardiogram) for one day of tests and hopefully just one sedation.  She has also written the consult to have your Broviac removed in Medicine Hat, as we will need to leave your line in to use for blood tests, blood products, sedations etc, until we know you are fully recovered and stable. Until then, like when your youngest child is growing up we hope to experiencing a lot of lasts; last few nights in this bed, last time sleeping hooked up to IV's, some good bye's to great nurses and friends, last time peeing in disposable urinals, last pizza night, last time for Chemo drugs....  I would be lying if I said I was not a little sad to be saying goodbye to a number of these things.

Over the past few weeks I have been thinking a lot about how far we have come, 6 months ago I could not even imagine a last Chemo.  Now after all you have been through and once again having the energy to be a 3 year old (read constant worry and trouble) its hard to believe we are still doing Chemo.  Relative to a number of people we have met on this journey, you are so far one of the lucky ones.  I read a lot of blogs these days and spend plenty of sleepless nights worried others Journey's may not be as smooth as ours.  I know better than to assume we are in the clear, beyond the number of long term side effects of your Chemo and the chances of re-occurrence, I struggle to picture what normal life will be.

We are also embracing all the changes in our lives for the positive, the warm embrace of close friends, family, colleagues and complete strangers is infectious.  This Journey for our family taught us an invaluable lesson about people, a vision for the world we forever want to be a part of.  It can be hard to say no to so many great charities but one person can't say yes to them all.  I have a change perspective though for some great charities that have such a profound effect on many peoples lives.  Causes Such as Alberta Children's Hospital, Make-A-Wish Foundation, Ronald McDonald House and the Canadian Blood Bank just to name a few.  We have been blessed to meet a variety of people from all over Western Canada with a spectrum of ailments; but we all shared a common compassion for the inner strength of our children and the special people and facilities that took care of them.

Love,

Dad

October 10th, 2013

Thursday
Home
Weight: 15.1 Kg
ANC: 531

I know that it has been awhile since I last updated your blog, but things have been busy.  A week ago, tomorrow, your CBC came back indicating a lower hemoglobin so you needed to go to MHRH for a blood transfusion.  We were in at lunch and home before bed.  I was hoping that we could avoid a transfusion this round but we needed to have just the one in the end.

On Tuesday, we had CBC to ensure your counts would be high enough to start you last cycle of maintence on Wednesday.  However, as we have started to expect, your ANC had dropped from 3000 to 531 in 48 hours.  We need an ANC of 1000 to start chemo.  They do really believe your marrow is tired and are hoping for a recovery in counts by next week.  We were packed and ready but I guess you were meant to stay home for Thanksgiving.  We need to always see the positive or else we can get pretty down and disappointed in things (at least that is what I keep telling myself).  I truly hope we can start next week and avoid any other delays.

We are getting into a routine at home.  We spend time doing small activities and even a little baking.  With your counts being lower and the weather colder outside, which requires us to be inside for most of the day, I have to make sure the house is pretty clean.  This is not so easy to do with 5 people in and out of the house all day.  I try to make sure all main surfaces and the toy room are disinfected and your room is always wiped down.  It scares me to hear about everything that is going around in the schools and I pray that your sisters don't come home with anything for at least another month.  It is so important that everyone around you is healthy, which isn't easy because when we are home we love to visit with family and friends.

As we go into the Thanksgiving weekend, I am reflecting on all I am thankful for.  I have never felt so thankful as I do this year.  I feel like I could go on and on for everyone and everything I am thankful for and there just isn't words or actions that can portray how I feel.  The year 2013 has definitely been the hardest year ever, but it has also given us a new appreciation for life.  I will never take my health or the health of my family for granted again.  I am so thankful for the amazing specialists that have become essential to our family in the last couple of months...Surgeons, Oncologists, Family Doctors, Pediatricians and Nurses!!  Because of these amazing people I am able to live pain free and you are in your last cycle of treatment, there is nothing more I could ask for.  I need  to end by saying I am most thankful for God, for listening to our millions of prayers and for looking over our family....thank you, thank you, thank you.     

Love you buddy,

Mom

October 3rd, 2013

Thursday
Home
Weight: 14 Kg
WBC: 4.3

You made it home on Monday after 48 hours in the hospital due to a fever. Your fever broke on it's own, and there was no infection, thankfully! You are back to your old self again and giving your sisters a hard time...lol. Your counts have fully recovered and you are ready to go back for your last treatment. We are hoping early next week, but it could be Wednesday depending when they can get you in. We have bloodwork again tomorrow to see where you are at. We need to figure the best time to stop the G-CSF because we don't want to stop too soon and have your counts fall. This is what happened last time. Your injection of G-CSF is getting tougher and tougher to administer. Your anxiety is so high and try to wiggle your way out of my restraint, which involves a lot of kicking and punching. I know I have said it before but I can't wait until we can stop the "pokes!"

Looking forward to a few more days at home with you...

Love you buddy,

Mom

September 29, 2013

Sunday
MHRH
Weight: 14 kg
Nurse: Alyssa
WBC: 0.1

So I spoke too soon...

After my last post, on Friday, we ended up in the hospital due to an increased fever. I had suspected that you weren't quite yourself but thought your hemoglobin could be low; however, once we received your blood work results it showed your hemoglobin was at 96, which is still good. I took your temp and it was at 37.7. We continued to monitor your temp throughout the afternoon and it seemed to actually go down for a few hours. Dad and I thought you had beat the fever but we were proven wrong when at around supper time your fever spiked to 38.5. According to your specific instructions from AHC, once you have a fever, at 38.0, for over an hour, you need to go to the hospital and if you spike to 38.3, you need to go to the hospital immediately. Well, dad had supper on the BBQ and we were getting ready for supper, but this sure changed in a hurry. We threw a bag together, phoned Oncology at AHC and they worked with Paediatrics here at the MHRH and we were quickly admitted.  This process works well because we don't have to go through emergency, which is not the place you want to be with a low WBC. Once at the hospital, they immediately started antibiotics and took cultures from your Broviac lines. Your fever stayed at 38.2 for a few hours, but did manage to come down on it's own just before bed. We were able to rest easy knowing your body had regulated itself.

Yesterday we spent the day hanging out in your room. You are back to your old self again, which means a lot of energy. We played a lot of cars, play doh, crane watching due to the hospital construction and watching your new favourite show, Caillou I personally cannot stand this show...lol). Your sisters came to visit and distract you for a bit. This is one positive being in Medicine Hat over Calgary, the increase of visitors. A family friend came to say hi and even Poppa stopped over for a bit. I know others want to come to visit but they have to be completely symptom free and right now there is a lot of "bugs" going around.

Today we received notice that your cultures are negative after 24 hours....yahoo!! However, we must wait 48 hours to ensure there is nothing growing. This means at least another night in the hospital. Your platelets were low yesterday (24) so I suspect a transfusion tomorrow so I am hoping we are able to head home tomorrow night, fingers crossed!

You show me everyday you are an amazing fighter. You don't let anything get you down.  I know we are are on the home stretch and we just need to get through a few more hurdles!

Love you more then you know,

Mom

September 27th, 2013

Friday
Home
Weight: 15 Kg

Just a quick update from home! Everything is going well. Today we are headed to the Cancer Clinic at the Medicine Hat hospital to see where your counts are at. I am assuming they are on their way down.

I wanted to take a picture of you so you can see how quickly your hair is returning. Your eyelashes and eyebrows are back and your hair is coming in. I will post some pics but I think I need to use the camera to get a better view.  You are very excited about your returning hair and tell everyone, "my hair is coming back!"

The only struggle we still have is your daily needle of G-CSF. You get more anxious each day and it nearly kills your dad and I. It takes both of us to hold you down and administer it and even now we might need more hands to keep you down and calm. I think we will all be happy for the day when we can be "poke" free.

With the girls in school, you and I are getting to spend a lot of time together. Gracie is home in the afternoons but in the morning it is just you and I. We are developing a bit of routine of reading books, playing with your construction toys, playing with play doh and trying to learn your letters and sounds. I love being at home with you, but know that being at preschool would be a good change a few days a week.  Hopefully next year you be able to go back to Montessori and be with all your favourite friends and teachers again.

Love you to the moon and back,

Mom

September 22nd, 2013

Sunday
Home!!
Weight: 15 Kg

Yes, we are home!  You were actually home late Wednesday night.  With a combination of efficient nurses and your dad's persuasion, you were discharged Wednesday at supper time.  We continue to give you your Prednisone at home and will begin G-CSF this week.  Although this round was quick, your last round requires 5 days of chemo, at the minimum.  It feels so good to type "last round" as it was just 6 months ago when we felt like this time would never come.  If all goes well, you will start your last round just before Thanksgiving. 

An exciting discovery this week was the return of your hair!!  You actually have eye lashes and eye brows.  It was crazy how fast they came back.  You left with dad on Tuesday morning and came back Wednesday night and I could definitely tell that they had grown.  Just today we noticed that your hair is also coming back.  You always get lightly colored fuzz after each round, which eventually disappears.  The hair today actually looks like hair and has some color to it.  I believe these signs are here to tell us that we are going to find normal again and we will start to return to our lives we had before this horrible disease took over. 

This next week will see your counts drop quite low and we will have to keep you in your bubble.  I worry now that the girls are back to school and your dad is returning to work that there is a greater risk of bringing "germs" into the house.  Your risk of infection is increased with these low counts.  We will all work at being more diligent with hand cleaning, etc

Love you buddy,

Mom

I wanted to put a small shout out to all the amazing people who are walking or running in causes that are now so dear to our hearts.  Last weekend, close friends of ours walked in Relay for Life, in honor of Kallum.  We were so touched that we were able to walk a few laps with them.  A couple of months ago, a childhood friend of mine also participated in a Relay for Life, in honor of Kallum.  Also, there is a Telus team running to raise awareness for Leukemia and Lymphoma.  They have chosen to run in honor of Kallum.  Today, there was a Rock the House Run supporting Ronald McDonald House.  Another great friend, from Calgary, raised money and then participated in the run.  We are truly honored by everyone's huge hearts and involving themselves in such great causes.  A future goal of ours is to follow your leads to raise awareness and pay it forward to others that are facing a similar journey.  You guys are amazing and true inspirations!!


Pictures from Relay for Life.

A pic from the other Relay for Life.

September 17th, 2013

Tuesday
Clinic/Unit 1
Weight: 15 Kg
Nurse: Micheala

Well, we received news on Monday that your ANC was finally at 1060, which meant you started round 3 of maintenance this morning.  You and dad left early this morning so we could have you guys at home for one more night.  I have to say, it was a difficult morning waking up and missing you and dad.  Your sisters were pretty upset too.  We have had you home for half a month now and it kinda felt like "normal" again.  The house feels empty and a bit lonely.  I am trying to keep your sisters busy, but we all are feeling the absence of you and dad.  We all cried and then prayed a bit this morning and just tried to remember that this is not forever, just something we have to do right now.  This isn't easy and it seems to get a bit harder every time the family is separated again.  The good news is, that if everything goes as planned you could be home as early as the weekend.  I am praying this is the case and we have no set backs!!

You are a trooper back at the hospital and your day has gone pretty well.  Dad can see you have been out of routine for awhile and have forgotten that you can't do somersaults or jump out of bed when you are hooked up...yikes!  You have a bit of readjusting back into hospital life.  You are excited to see your nurses, who you have been missing and hoping to see a few friends too.

You amaze everyday!  I can't wait until we are all back at home again!

Good night sweet boy,

Mom   

September 8th, 2013

Sunday
Home
Weight: Must be up b/c you are eating very well

Just a quick update regarding your counts.  Your ANC was only 450 on Friday and you need by at a 1000 before we can start your next round of maintenance.  We were really hoping that you would start tomorrow but that won't be the case.  You will have another CBC done tomorrow morning with the hope that your counts have recovered and we are able to start on Tuesday.

We have a few theories on why your counts have not recovered but aren't totally sure.  It does have to do with the starting and ending of your G-CSF.  We will be meeting with Dr. Anderson once we do start your next cycle to discuss what to change for the next time in order to avoid any delays. 

Anyways, we have taken the extra time to fit in a few more bike rides, complete some work around the house and Dad having the opportunity to do some actual work, from home.  You are definitely feeling well as your time outs have needed to come back as well as some "consequences."  

September 3rd, 2013

Tuesday
Home
Weight: ?
ANC: 500

So, today we had your first major delay.  Your ANC needs to be at 1000 before you can start another round of chemo and unfortunately your ANC was 500 at your CBC today.  We were all packed and ready for you to leave tonight and start round #3 of Maintenance tomorrow morning, but I guess we will need to wait.  As much as we all love you being home, we do want to continue through the protocal as quickly as possible, so you can finish sooner.  I guess with only 2 cycles left we are all getting anxious and just want the end to come as soon as possible.  You will have another CBC on Friday to see if we can start next week, we are hoping for Monday.

On a positive note, this has been the longest stretch that you have been out of hospital and let me tell you, it has been awesome!  Yesterday we had a small party to celebrate your 3rd birthday.  We assumed you would be in hospital for your birthday so we wanted to do something before you left.  The party felt so good and you loved every minute.  Of course, you were spoiled by your friends and family.  It is crazy that your are already 3, although with what you are battling through I would swear you are a lot older.  You are such a strong and courageous warrior!!

Lucky for us, we were able to sneak in a few days out at the cabin, in Elkwater.  You had a blast hanging out with your sisters and cousins.  You absolutely loved the boat ride as well as a short tube ride with dad.  You did remind us several times that you are still a boy and have little fear.  There is a large cut on your head resulting from a fall off the deck as well as legs full of scratches and bruises.  Boys will be boys...I guess!

During this stretch at home you had one platelet transfusion and one red blood cell transfusion.  Both of the transfusions were done here in Medicine Hat, which was nice.  You still needed GCSF for 10 days to boost your counts, which required daily needles (pokes).  You still have not gotten use to getting poked (I don't blame you at all) and it is usually quite the fight to hold you down.  I am looking forward to end so we don't have to administer anymore of these pokes when we are at home.

We will definitely take advantage of the extra days at home.  On the bright side, we will be able to celebrate your birthday on the 5th all together!  I hope that every birthday wish your wish for comes true this year....you definitely deserve it!

Love you buddy,

Mom

 

August 22nd, 2013

Thursday
Home
Weight: 14 Kg

You are home!!!  You were able to come home on Monday and we are praying you can stay home until Sept. 4th.  So far, so good!  We did have some blood work done yesterday which showed that your red blood cells were low so you needed to get a transfusion.  We spent 6 hours at the Medicine Hat hospital yesterday and as a result your energy is through the roof.

This last round of chemo went fairly well.  However, you are really starting to have a temper and tend have many temper tantrums now that you are back in your hospital room.  You are mostly mad about food and not liking a lot of the food or just not sure what you like anymore.  At times, you can be very rude and yell at the nurses, dad or me.  It is a hard balance trying to decide to discipline you, or just letting somethings go.  We question whether this is just a stage.  It is hard not to feel guilt that you are going through this and we are still going to have to treat you like a 2 (almost 3) year old boy.  It is not an easy balance. 

The hospital stays tend to be a bit easier now that you are meeting some very special friends.  There is another 2 year old boy who you love talking to.  You have had rooms beside each other a few times and have shared some car racing with.  There is also a special young lady, 14, who loves talking to you and I am pretty sure the reverse is the same.  Dad and I enjoy talking to her too as it gives us perspective of what you are going through.  She is very knowledgeable about leukemia which leads to some great conversation.  It is important for your Dad and I to form these relationships with others on Unit 1 as they are going through what we face everyday.  Sometimes we talk treatment, etc but sometimes it is nice to hear about their lives outside the hospital too.  Our prayer list has definitely grown in the last couple of months and our lives changed forever.

Now that your home we have been busy playing with friends and family.  Your favorite pastime is your wiggle car.  We can barely get out of the van and you are already back on the car.  If you are not outside you are spending time in the house playing cars and babies with your sisters.  Grilled cheese is still a favorite right now, but it has been fairly easy introducing a few new things into your diet.  At least you are not eating grilled cheese for all 3 meals and snacks!

The countdown is on for everyone as Back to School is just around the corner.  Your dad and I are definitely not counting down.  I am sad that summer has come and gone so quickly.  I was so happy to have the girls with us through many of your treatments, which was possible because school was out.  I know we are going to really enjoy these 16 days left before you head back to the hospital.  I only pray that next year you will be able to have a better summer filled with sand, water and camping.  These are small things, but important things to little boys. 

You are an amazing fighter everyday of your life!  You inspire me to be positive and to cherish the little things! 

Love you to the moon and back,

Mom

Here are some pics from the summer.  Also, a tattoo that I got as a reminder of your constant journey.

August 15, 2013

Thursday
Unit 1
Room 1110
Nurses:Renee and Laura

So its been awhile since we blogged and overall its seems we just are blogging less but its really a good thing.  You have been spending increasing time out of hospital and keeping us busy to make the most of this time away.  The last round has been our best so far, we spent 5 days in hospital, 12 days in Calgary waiting for counts and side effects and 4 nights at home.  All that with no major side effects!  Your counts did drop to zero for ANC so you were very susceptible to infections again or mouth sores, but they never came. 

We came back to hospital on Wednesday, but you had a runny nose for the last 4 days at home, it was clear and no fever so we assumed it was just allergies.  We started chemo anyway and after a day of isolation the doctors agreed and you now can also do your rounds in the hallways between chemo treatments.  This all adds up to 5 days in hospital, that won't be miserable (total of just over 2 hours of being hooked up a day). We should also be able to go home to Medicine Hat on day 6 in relative safety as it is not likely your counts will drop all the way to zero.  We are using G-CSF again to help keep your counts higher.  This means you could possibly spend the last 16 days of summer with your sisters before they head off to school and we go back to hospital.

You are courage to me,

Love Dad

August 5th, 2013

Monday
RMH

So not a lot has changed in the big picture, but we do find ourselves again living in two cities.  Just after your mom did the last post Abbi started to develop a cough and a runny nose.  We had to wait out the night to see what morning would bring but I could not sleep in fear you could get sick and we would be once again split up.  Morning came and Abbi was no better; me and mom talked about all the options, splitting to a hotel, all doing a hotel and 3 people going home.  It didn't take long and the tough decision was made, mom and girls needed to pack up and head home.  It didn't take long to pack, its like tearing off a band-aid and its just better to get it over with.  The girls were pack by just after 9:00 AM and we were once again a two man team.

We hoped now more than ever your counts on Sunday would be up but that was not the case.  We spent Sunday morning waiting for counts to come back and then the afternoon waiting for platelets to be prepped for transfusion.  It was a long day as we are both a bit anxious and you are not happy not being able to go somewhere to walk or be entertained somehow.  The two of us need to work together to make sure we keep you safe, we feel so lucky you still have no side effects but the longer it takes for counts to come in the greater the chance the side-effects or infections could come up.  It becomes a struggle to give you some quality of life out of hospital and keeping you healthy. The second part is now we want to do maintenance in 21 day cycles instead of the planned 28, this will shave a whole month off treatment.  So 21 days is just next week on Wednesday, come on Neutrophils!!!

I thought I may take this time to also explain or clarify some of the medical terms we keep using, I have got some feedback it can some times get confusing.

CBC or Complete Blood Count- You have Red Blood cells that carry oxygen, Platelets that stop bleeding and White blood cells that fight off infection. White blood cells are made of neutrophils and they are represented by one number called ANC (Absolute Neutrophil Count).  The various chemo drugs kill off these cells just as they do the abnormal cancer cells.  We use transfusions to keep Red blood cells and platelets in check and G-CSF to promote the development of  neutraphils.

LP or Lumbar Puncture - The doctors sedate you and take out some spinal fluid than inject a mixture of drugs to treat any cancer cells in your spinal fluid.  The blood and spinal fluid have a barrier that does not allow all drugs to pass between.  One of the greatest effects on the chance of cure for this particular cancer is the use of drugs in the spinal fluid, this alone has saved hundreds of lives.

Bone Aspiration and Bone Biopsy - This is done to detect if the treatments are working and looks for any signs of cancer, its done during the LP's.  The difference between an aspiration and a biopsy is an aspiration uses a syringe like device to suck a small amount of marrow out where a biopsy uses a screw like device to extract marrow mechanically.

Mucositis or Mouth Sores - These sores are like cankers but the older kids we talk to say they hurt much worse and they can occur anywhere from the tip of the tongue all they way through the digestive system to the bum. It occurs because the cells that line the digestive systems metabolize or regenerate fast and so they also break down fast like cancer cells during Chemo.

Dressing Changes - Once a week we must take the bandage on Kallum's chest that protects where his central line enters from infection.  This involves cleaning the skin and part of the tube under the bandage with a cleaner that kills bacteria.

Cap Change - The caps at the end of Kallum's central line where various meds are given and blood is taken, its like a quick connect system.  These must be changed by nurses or us once a week.

Hep-lock - Every 2 days the nurses or us must inject Heparin into both your tubes to make sure there are no blood clots or dissolve any that are starting to ensure they do not enter your blood stream.

We are looking forward to Wednesday as Mom and the girls will be coming back to stay with us before they head to Winnipeg.

Love,

Dad

August 2nd, 2013

Friday
RMH
Weight: 14.4 kg

It has been awhile since I have updated but that is because we have been busy.  You were able to leave the hospital on Saturday, as your chemo meds were done being administered.  Your sisters and I arrived on Saturday to help pack you and dad up and head out.  It was decided that we should stay in Calgary to wait for side effects.  You are taking the same chemo meds that have given you nasty mouth and bum sores; however, this time you are taking less then you were previously so we just aren't sure what to expect.

We tried getting into RMH, but unfortunately they were full.  Luckily we were able to stay at Uncle Brandon and Aunty Chandra's house until Wednesday when we finally got the call that we could get a room at RMH.  We have been here for the last couple of days.

Your sisters started at day camp this week and they absolutely love it.  The camp is sponsored by Kids Cancer Care Foundation and it is for kids with cancer, kids with siblings of cancer and of course survivors of cancer.  The girls have learned so much from the camp and I love that they can get to know other kids their own age who are also affected by cancer.  The girls can't wait to go again next year and take you with them!

Today you had an appointment at the clinic for a CBC and your WBC came back at zero.  This means we needed to revamp our plans for the day and stay outside or at RMH for the most part.  There is a great park at RMH as well as a basketball net that you love to play on.  It is tough to find things to keep busy when you are in a city that you don't live in, but RMH does do a good job with providing activities for the whole family.
You will get blood work done again on Sunday and if your counts are on the rise and you don't have any side effects, we could be on our way back to Medicine Hat.  We know not to get our hopes up, but it is so hard not to.  I think we are all hoping to get back to our own beds!!  We will just keep you in your "bubble" for a couple more days and hopefully all will be good.

Love you buddy,

Mom

July 25, 2013

Thursday
Weight 14.12 kg
ACH Unit 1
Nurses; Kelcey, Sarah and Janey

I have to say my son it never gets easier to leave home and leave your mom and sisters behind,but we are getting close to the end.  We have officially started your maintenance cycles as all your remission tests came back positive showing no signs of cancer in your body.  Your maintenance protocol is still considered pretty aggressive treatment but should be easier on your body; it has to be aggressive to make sure it still kills any un-detectable cancer cells as they will still metabolize fast.  Things have started off well except taking your predisone, which you continue to bring back up.  I am trying to mask the taste in apple juice and other foods but it is not really helping.  I am working with the Pharmacist to see what we can do to make this process a little easier.

This trip is also a bit easier for two more reasons.  The first reason being you are excited to come back to "your" hospital.  Our time spent in the Medicine Hat hospital was good, but I think we have grown used to our surroundings, nurses, families and routines in Alberta Children's Hospital.  I know for myself I re-enforced how special a program it really is, in-particular being surrounded by other friends and families in the same situation.  Its hard to describe, but everything changed when you were diagnosed and its something that really is unique to a family that is going through or gone through this devastating journey.  In unit 1, you can still have down days but as we have said before you live through a lot of the other families around you. In Medicine Hat, we were isolated from this type of support and your mother and I struggled a bit to keep ourselves positive, it was just different..  As usual, you had a very warm welcoming from the nursing staff and after spending the day in clinic and a couple hours on the unit you had already initiated a full out water fight; this made you smile ear to ear.

The second reason its easier coming back is mom and sisters are soon to follow, they are coming on Saturday.  Its been such a critical part of your treatment to be as normal as a family as we can be.  To this point it has been your mom and I in Calgary with you in hospital and just us when we are out.  Mom has been the yo-yo bouncing back and forth trying to keep our lives here and your sisters lives at home working.  Now that its summer we are all going to stay up here together and get to do some things as a family, extending our time together.  When we are together we see such huge lifts in your attitude and determiner and this comes out in your energy, mood and appetite.  Chemo can take care of cancer cells but it takes family to make sure you believe and support your treatments mentally as well.  The ladies should be around with us until we get to head back home in about 2 weeks.

Love,

Dad

July 21, 2013

Sunday
MHRH / Home
Weight: 13.6?
Nurses: Reagean, Carmelita

Well not much has changed in the last couple of days, which is probably a good thing. You sleep at the hospital and you are given antibiotics at 4:00am, 12:00pm and then have day pass until 8:00 pm and return for another dose of the antibiotics.

You are sleeping well now that you are use to your surroundings. Your mornings are spent playing trucks and cars that a very special nurse buys you everyday. You have quite the collection now. We count down the time to noon so we can get home and see the family.

On Friday, you were able to go to Elkwater for a few hours while on day pass. You loved being outdoors with your friends and family. Most of our afternoons are spent hanging around home and enjoying the nice weather. Dad wraps your tubes up and you love watering the grass or having water fights with your sisters. We have to be careful you do not submerse your tubes and you are pretty careful, which helps. You are actually pretty protective over your tubes and are always watching your lines when hooked up. I find this amazing considering your age...it is like you just know!

You will finish your antibiotics tomorrow at noon. This means you will have one night at home before you go back to Calgary as your first cycle of maintenance starts on Wednesday. We will be trying to make the best of the last few days at home.

Here are some pictures of your stay at the Medicine Hat hospital.

Love you buddy,

Mom

This is the parent room, connected to your room. There is a bed that pulls down in the corner, a fireplace and a TV. So nice...

Pic of your room.

Playing your cars.

July 16th, 2013

Tuesday
MHRH / Home
Weight: 13.6 kg
Nurse: Sheila
WBC: 0.1

So today we got news that you do have a bacterial infection.  It is similiar to the infection you had in June and therefore will be treated with the same antibiotics.  They were worried for a bit that it was the exact same infection, which could mean that there was an infection in your central line.  Anyways, you will be on antibiotics for 10 days, every 8 hours, which means day passes again from 12 pm to 8 pm.  We are upset that you are not home with us 24 hours a day but we will take 8 hours, especially since you will be able to stay in Medicine Hat. 

You still do not have any neutrophils and your WBC has not come up yet so we need to keep you close to home.  Hopefully your counts will rise in the next couple of days.  Your red blood count as well as platelets have dropped, but only slightly.

We are going to take advantage of the hours you are at home to spend as a family and just enjoy each other.  I know everyday you can't wait to see your sisters and ask and ask until they come up to the floor.  Now, you will be able to go home with them every afternoon.  This afternoon you are crafting with Abbi and make a Batman poster to go on your door at the hospital.  A very special nurse brought it by for you and you were very excited! 

Love you more than you know,

Mom

July14th, 2013

Sunday
MHRH
Weight: 13.6 kg
Nurses: Kelsey / Laura
ANC: 80

Well, we had a bit of a set back yesterday.  You started to present with a fever around 1 pm.  We monitored it for an hour and the fever actually started to get higher so we knew that we needed to take you to the hospital.  After some coordinating between the Oncologist in Calgary and the Pediatrician in Medicine Hat, you were admitted to Pediatrics at MHRH (Medicine Hat Regional Hospital) around 4 pm.

The nurses took your vitals right away and your heart rate was high, your fever was high and your blood pressure was dropping.  They took blood right away to get a CBC and to take cultures.  When your CBC came back it showed that your red blood cells were 69 (they were 79 just a day before), your platelets were 8 (they were 29 just a day before) and you had no ANC, which was consistent from the day before.  Orders were given for both transfussions as well as antibiotics.  While waiting for the blood you continued to show signs of distress.  Your body started to shake and you were unable to stop it.  I have to admit I knew why your body was reacting this way, but it was still scary to watch.  The Pediatrician was worried too and made sure transport was on call in case you needed to be airlifted to Calgary. You did finally receieve your blood, antibiotics and also a dose of Tylenol and within the hour you were back to your old self again.  Everyone could take a breath knowing your vitals were back to normal.  You had a restful night, which was also good news.

Today the girls and I arrived to the hospital in the morning to see you in a great mood.  You continue to recieve two types of broad spectrum antibiotics as we do not know what type of bacterial infection you have.  We do not have results back from the cultures taken yesterday as we have to wait 48 hours.  However, an early screening showed that they were positive so we will have to wait until tomorrow to know what the bacteria is.  This is not great news as you will now need to stay in hospital until the bacterial infection is gone.  We hope to know more tomorrow like what type and then what type of antibiotic is needed and if you can take orally, etc.

You had visitors today, which helped pass the time.  The girls and dad came back and brought supper.  You have not had much to eat and the hospital food is not your favorite.  You told dad you wanted chocolate chip pancakes, so he made them for you, but ended up never eating them.  I am hoping that your appetite will return soon as you need all the strength you can right now to fight this infection.

I am hoping for more answers tomorrow.  I do pray that this is only short term and you can come back home soon.  We miss you so much already.

Love you to the moon and back,

Mom

Here is a pic of you and Corbin.  Corbin had to wear a gown as you are on isolation.  He actually looks like the patient in this pic!

July 11th, 2013

Thursday
Home
Weight: 14 kg?

Well we are home and loving it!  It is so good to have you home.  You have been home for a few days now and we have had no issues.  This is the first time we have had you home right after you were done your chemo meds.  Since you had no side effects with these meds last time we thought we would take you home instead of hanging out at RMH.  You will need to have blood work done here, at the Medicine Hat Hospital.  Your first CBC is tomorrow morning and then we can determine if and when you will need a transfusion.  Last time on this cycle your required 3 transfusions so I am thinking you will need to have at least one done this time.  We also have to be watch your counts to see when your WBC rebounds.  We have to be very careful and keep you in somewhat of a bubble until we see your counts rise again.  Every morning we need to give you a shot of GCSF to help increase your counts.  You are still pretty anxious and get upset knowing a "poke" is coming.  I don't know when it will get any easier but it is worth it because you are able to be home.  Well this is just a quick update to say all is good and we have made it home.

Love you more than you know,

Mom

July 6th, 2013

Saturday
Unit 1
Weight: 14.05 kg
Nurses: Kevin / Lauren

So, we spoke too soon...you are still getting sick when getting your high-dose chemo.  It is becoming less and less, but it is usually 2 to 3 times a day.  You are taking Ondansetron and Ativan to help with your nausea and it does seem to help.

The good news is that we are able to go home tomorrow!!!  Since you did not have any side effects on this cycle last time they feel confident letting us go back to Medicine Hat, instead of staying at RMH.  This does mean that we will have to be very careful at home and keep you a "bubble" since your counts will drop to 0 or close to it.  You will do blood transfusions and check ups in Medicine Hat.  If all goes well, you will be home close to 20 days.  I can't wait and I just pray nothing changes.

This comes as a huge relief to me as well as 6 days of next to no sleep kills us both, its going to be extra sweet to sleep in our own beds and rest back up.  On top of that there is no place like home for your recovery, normal routine helps 10 fold to increase your strength and your weight etc.  At this point in your treatment the time we spend at home is almost as important as the time we spend in hospital.  As well the girls are now on summer holidays so we get to catch up on family time, something we all appreciate a little bit more now.

Love you buddy,

Mom and Dad

Here are some pics from the week. You spent time crafting with medical supplies and having water fights with the nurses.

July 4th, 2013

Thursday
Unit 1
Weight: 14.2 kg
Nurses: Megan (10) / Cathy

Yesterday was not a good day for you.  Something was causing your stomach to be upset and you ended up getting sick multiple times.  This is the first time throughout your whole protocol that you have been sick.  You are not getting new chemo drugs, in fact you are getting the same chemo drugs and doses as the last treatment.  They have given you some anti-nausea drugs as well as gravol to try to settle your stomach.  You and dad did not have a very good sleep in between getting sick, putting in eye drops and one hour beeps on your pump due to chemo meds throughout the night.

This morning I was expecting a tired, sick little boy, however I found you sitting up eating breakfast and excited for the parade to start.  Your dad was amazed and annoyed (lol) at how quickly you turned around.  Literally half and hour earlier you wouldn't even wake up when the doctor was in the room and now you are walking all around your room.  Anyways, since you were receiving chemo this morning, you weren't able to go outside to see the parade.  The charge nurse did manage to find a room available with a great view of the parade route so we moved there for the parade.  You were through the roof excited for the parade and loved your new cowboy hat from the hospital.  You continued to tell me what things were before I could even see them.  Your hand was always waving through the window.  The horses and the helicopter (flying up above) were your favorites.  It is truly amazing to think that there is a special stampede parade just for ACH.  Seeing all the children's faces light up when the parade start is something I will never forget.

Your day today continued on a good note.  You have not gotten sick anymore (knock on wood) and you managed to have a good nap this afternoon.  I can tell that you don't have the energy that we are use to, I think yesterday definitely took a lot out of you.  We decided to take you off the gravol to see if you are able to keep everything down.  I hope the worst of it is over...fingers crossed.

Here are some pictures from the parade!

Love you to the moon and back,

Mom

July 1st, 2013

Monday
Home / Unit 1
Weight: 14.4 kg
Nurse: Micaela

Happy Canada Day!

Well it has been exactly 3 months since your official diagnosis.  It has been a life changing couple of months and definitely not the easiest.  You started out so weak and unable to eat to now a 2 year old that is full of energy and loving life.  It is hard to see you with your limitations, but you do make the best out of every situation and do not let illness get in the way.  You teach me everyday to live it to the fullest and appreciate the simple things in life.  I know that we have a long journey still ahead of us, but it makes me feel better knowing you are healthier and stronger going into each treatment.

You left today to go back to the ACH.  This time you weren't too upset, but I think it is because we had been talking to you about it quite a bit.  There were tears and some upset kids when you left but we all know that you will be back soon.  These good-byes seem to get harder for me but easier on you. 

The time that we spent with you at home was amazing.  We had the opportunity to hang out with family and great friends.  I loved seeing you interact with your sisters, cousins and friends...it was like you had never left.  The weather was beautiful and we took advantage of being outside riding bikes, going for walks and trying to stay cool.  With your broviac tubes you are not able to go into a swimming pool, get really wet or even attempt the beach.  Your sisters were very understanding and we did not fill the pool up too much and they kept a close eye on you.  We also stayed away from the beach when we had a short visit to Elkwater; this was not easy but everyone was understanding.

While you were home, we had the chance to visit some people that have helped us along the way.  It was nice for everyone to see how healthy you are.  I have no words to express how thankful we are to everyone who has reached out to support us in one way or another.  We would not be here without your backing. 

Tomorrow you will start the second cycle of Consolidation.  Your first cycle did not show any side effects so I am hoping this is the case again.  You will get a LP (lumbar puncture) to start of your treatment and will need to be sedated for this.  I hate that you need to be sedated for all these procedures but I have to remember that they are becoming less and less.  In fact, this should be your second last LP in your protocol.  I am coming up on Wednesday to help dad.  Your chemo is through the night and night, which means you and dad will be up every hour and need to do eye drops every 4 hours.  It will last 5-6 days and then you will be done!

We miss you like crazy already.  The girls and I cannot wait for you to come and home!

Love you buddy,

Mom

June 26th, 2013

Wednesday
Home
Weight: 14.2 kg
Nurses: Your sisters
WBC: 1.1

Well as you can see, we are still in Medicine Hat.  You had your blood work done yesterday and your counts had not recovered enough to start chemo today.  We will have your blood work done again on Friday to see if your counts have recovered.  Your red blood cells were a little low so they suspect that you may need a transfusion on Friday.  If your counts recover you will start chemo on Tuesday, in Calgary, due to the long weekend.  We were happy and sad with the results.  Happy that you will be home longer, which is amazing, but sad that we are delaying your protocol.  Delays will stretch things out longer and we are eager to complete your plan sooner than later.

Anyways, we are going to use every minute we have with you.  This means more bike rides, backyard playing and definitely more dancing!  Also, this gives people a chance to come and say hi that were not able to before due to the short time you and dad were going to be home.

I would like to mention a fundraiser hosted by ARC Resources.  They are having a Garage, Bake and BBQ sale for Arc families affected by cancer.  It is this Friday at the Arc Resources Ltd. (behind the old Walmart), from 9-3.  Thank you to everyone involved!

We are loving every minute with you at home.  I cannot describe how it good and normal it feels to have you at home.  We definitely have our limitations but are making the best of the time we have.  It takes something like this to value a simple walk or bike ride as a family.  At this moment you are playing dress up with Abbi and are all dressed up in necklaces and bracelets...so cute!!

Love you buddy,

Mom