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