May 16th, 2013

Thursday
Unit 1
Weight: 13.1 kg
Nurses: Kelly/Amy
WBC: 0.0

Well we are struggling today to say the least.  Your mouth sores are so bad, but you still have hunger pains.  This is a vicious cycle of wanting to eat and then being unable to eat it.  You ask for the food, sometimes even try to eat it and then decide you can't eat it.  As much as we tell you that you can't eat the food or that the food hurts your mouth you throw a fit until we bring the food to you.  I try to remove the tray and put it out of your eye sight but you actually find a bit of comfort with the food around you.  It is very frustrating and requires a lot of patience to help you right now.  You scream for food and insist we go and make it, which we eventually do because we want to keep you calm, but then you get upset because you can't eat it.  I wish someone could tell us what we should do but there doesn't seem to be an answer.

You are visibly swollen in your cheeks due to the mouth sores.  You also still have bum sores, which cause you pain when you are sitting up.  Your eyes are a bit swollen, especially when you have just woken up.  The good news is that you do not have excess secretions this time and have no problems with your respiratory system.   All we can do now is work with APS to get you comfortable.  Just when we think we have your pain managed, you seems to get worse.  Again, we are on the PCA and I am thinking dad will probably be up through the night pressing it.

There were some positives today.  Mark, the music man, came to play in your room.  At first we thought you might not want to play today, but you quickly change your mind.  I video tape you dancing and moving to the music, which you now watch over and over again.  Another highlight was when you were lying down and you whispered to me that you wanted to kiss your nurse and you were upset that she left and you didn't get a chance to give her a kiss.  When Amy returned to the room I told her what you said to me and she came over and you gave a kiss on the cheek.  You and Amy were very happy...lol.  Lastly, you pulled your blankie over your head when the Resident came in to check you over.  You stayed like this during the entire examination.  Thank goodness for some of these small moments to help through all the difficult ones.

You had some visitors today.  Maggie Harrison, Dr. Harrison's wife (our family doctor), came to see you.  I have met with Maggie and she has been a great support as her son had Leukemia too.  It is nice to connect with someone that has gone through something very similar.  Also, Sarah came to visit.  She was up for a day trip and stopped in to visit with you.  You didn't visit too much with anyone, but I know you enjoy listening to conversation.  The visits certainly help your dad and I.

Well I am hoping for your counts to go up so you can start healing.  I just wish I could take this hurt away but all I can do is try to stay patient and make you comfortable.  You are such a little warrior and I am amazed everyday with your incredible strength.

Love you buddy,

Mom

I just want to add that I am feeling very frustrated with this whole process.  I was very diligent with the mouth washes and overall oral hygiene during and after your chemo treatment.  I did this with the hope that you wouldn't be back with these mouth sores.  Somehow I was convinced that we wouldn't be dealing with the mouth sores to the extent that we are again.  It beats me down and makes me very negative, which I know is not what is best right now.  It looks like in our next cycle, we will be using the same meds, just at a lighter dose, so I must get my mind around the fact that this going to happen again. I really hope that we are able to get back to Medicine Hat once your counts recover.  This environment is draining on both of us.  We aer con

Love,

Dad

Here are some pictures of you playing music with Mark.

Here is your smile for the day...

May 15th, 2013

Wednesday
Unit 1
Weight: 13.0 kg
Nurses: Christina/Amy

And we are back down...

I arrived at RMH last night at around 9:00 pm.  You were already sleeping but seemed a bit unsettled.  I decided to come up last night because you had an appointment this morning at 10:00 am with Lindsey, our primary nurse and Dr. Anderson.  We were hoping with that we might be able to pack up and head home for awhile as you have handled your side effects well so far.  You do have some mouth sores as well as bum sores, but dad has been using creams and rinses to keep the sores manageable.

During the night, dad was taking your temperature and you started to run a fever.  He also noticed that your pillow was soaked because of your drool.  The drool is a sign that the mouth sore could be getting worse and you are not swallowing due to the pain.  Dad called the Oncologist on call and she said to bring you in to be assessed.  We got you ready and I drove you and dad over to the hospital at 5:00 am.  They gave you some Tylenol for your fever and some Morphine for the pain.

When I made it back to the hospital this morning, after a necessary Tim's run, you were in "okay" spirits but having troubles eating and drinking.  It is obvious that this hurts your mouth.  You also have a nose bleed that is difficult to stop.  Dad ended up pinching your nose for 5 minutes to try to get the blood to clot.  Your platelets are at 23 so they are contemplating a blood transfusion.  Your heart rate is a little high and you feel cold.  Amy suspects that you will need a blood transfusion to boost your red blood cells too.  They are also giving you some fluid to help lower your HR. You spend your time watching TV and playing on the iPad.  You get upset because you are hungry but everything hurts in your mouth.

You do finally have a blood transfusion by early afternoon.  They APT is following you again to help manage your pain.  It is so difficult to see you in so much pain again.  This happened so quickly and I don't think your dad or I were ready to deal with this so suddenly.  You are still on Morphine and it is on a PCA again, where your dad or I can control the amount of pain meds you get.  This is very difficult as we don't really know how much pain you are in and we don't want to sedate you.  It is a constant struggle and the doc and nurses rely on our input when it comes to your pain level.

You do manage to eat a small piece of cheese and one digestive cookie; however, you can tell it is very painful trying to get the food down.  As the day continues you are visibly in more pain and your spirit is deflated.  You spend some of the time sleeping  but when you are awake you cry out for dad or I and just want someone to lay and sit with you.  It kills me to see you in pain.  I know that we have done this before, we all knew this could happen again but I just wanted it to be better this time.  There was a bit of hope that this would be easier on you this time and we were just living on that little bit of hope.  I just pray that the pain is controlled enough for you and that you don't have to suffer.

Love you to the moon and back,

Mom

May 13, 2013

May 13, 2013
Monday
Ronald McDonald House

So we had hoped for some freedom on Friday last week and to be discharged Saturday, but the schedule changed a bit.  Your Methotrexate levels had gone up twice between tests so you had to stay in for hydration, basically same routine as last time, but we caught it much sooner.  The Methotrexate is the drug that most likely caused your mouth sores, so hearing it went up made me a little edgy.  Good news is the mouth sores didn't get worse and with the help of a doctor we now have documented the cause of the Methotrexate increases and so the same thing should not happen again. They believe that since there has never been positive result for abnormal cells in the spinal fluid, significant Methotrexate is passing from the spine and into the blood after the LP's.  So when the IV Methotrexate clears after hour 48 and hyrdration is stopped the next 2 LP's increase the level.

Enough medical talk though, Sunday came you cleared your levels, we got some more meds  and we were discharged about 3:00 pm to Ronald McDonald House.  Yes, that means finally you have also cleared your viral test and are no longer on isolation and can be at RMH.  After toting the 100 pound suitcase back with Poppa we thanked him for all the help and he headed home.  It was back to you and I and you were not all too confident in the fact that you were free.  I thought a drive in the truck might help anchor the reality that we were out but not soon after that we were invited to the Holtz's for dinner.  When I asked if you wanted to go you were all smiles and when we got there you are a kid again, my heart boils over with excitement.

We have spent the last couple of days driving around.  You have a lot of mood swings and tell me what I can and cannot do.  I know that this part of the Predisone but it does make it tough for me.  You told me that I wasn't allowed to have supper because you didn't want to go down to the kitchen.  Anyways, mom will back on Tuesday night and we have an appointment at the hospital on Wed morning.  We are hoping that you are able to be go back to Medicine Hat after the appointment.  Fingers crossed.

Love,

Dad

It has been awhile..

May 9th, 2013
Gracie's 5th Birthday!

Thursday
Unit 1
Weight: started at 14.6 kgs and peaked at 13.25 kgs
Nurses: Megan/Kevin/Renee/Meghan/Laura

So its been awhile since I could put our experience into words.  It turns out a healthy kid can be more demanding than a sick kid.  After the great time away and getting to be a family of 5, we returned to the hospital, on Monday, and spent the day in Clinic.  Now clinic is set up to get the Chemo drugs started before they admit you to Unit 1, it allows nurses to be more effective.  We got there at 9:00 am to see the Oncologist and then they got us signed in and start with blood work to make sure the counts are up.  At 10:30 am, we found out the counts are not quite as high as hoped, but high enough to start. However, as was common before, we need to wait on the drugs from the pharmacy, in this case potassium enriched saline for pre-hydration.  To make a long day a short story, we finally get things started about 4:00 pm so most of the Chemo will happen on Unit 1, so much for a smooth start.

The good news is that even though you have a 5 minute breakdown knowing that we were back on Unit 1 and not RMH, your spirits are amazingly high and you ask to get back into hospital PJ's.  These are the stylish yellow and white striped ones, which resemble the Bananas in Pajamas show, which your sisters think are so cool.  Anyways, oral meds are a breeze, you help the nurses find and hook up your lumen's all the time, you pride yourself knowing "no more pokes".  We spend days playing match games, play-doh, reading books and sit down "walking around the unit".  That's right you love to walk around, to the kitchen, get movies, see fish or just go out walking.  All the nurses can't believe the change in your demeanor and attitude, its really a 180 degree swing for you.  You are eating and drinking like an athlete.  After your first LP, you sit down and devour 2 bagels and over 250 ml of chocolate milk in a single sitting.  To add to our optimism your neutrphils on Tuesday have doubled since Monday, a huge bonus the doctors can't really explain.

However, the huge hit around here is "Chemo Elmo" who was developed on Tuesday while you had your LP.  The management team I work with at TELUS, brought you a huge 40" tall Elmo stuffie that the nurses have outfitted with a central line, hospital PJ's, nasal prongs and hospital ID band (It says CHEMO ELMO).  You awake from the procedure on Tuesday and start to giggle at Elmo's appearance and tell everybody about him, you particularly love how he has a central line like you.  There has been a non-stop, stream of nurses, doctors and some patients to come see this new friend of ours.  He has also evolved as various people visit, he now wears the infamous Blue Chemo smock, safety glasses, rubber gloves and holds a Syringe.

Poppa arrived Wednesday to substitute for your mom this week, as she assists the girls with dance and celebrates Gracie's birthday.  He can't believe the change either on Wednesday but with the good comes the bad.  Thursday morning we start re-living the rage that comes with fasting and steroids as our morning starts at 5:30 am screaming for a bagel and never really return to sleep.  Enhancing the mood swings today is the anxiety of another LP, for some reason you forget how non-eventful they are for you.  You stress over pokes and sleep medicine but after the procedure you are back to calm K, eating 3 hot dogs, 1/2 a bagel and some chocolate milk.  As the day goes on you tire out, but refuse to sleep, again combined with the steroid rage we have some dark moments.

There is hope though for tomorrow, you could be free of IV's and may get a day pass to get outside and get fresh air.  I should mention that late Wednesday we learned your latest viral test was not negative as we had been told and so you are back on isolation and stuck in your room.  Building on that and our lack of mouth sores so far means we could be discharged as soon as Saturday.  The plan is to spend a few days locally to make sure all free and clear for mouth sores, but than we even aspire to travel home to Medicine Hat.  Not getting too excited yet, but the rise we got out of being a family again has driven the importance we all play in keeping each other motivated.

As always your courage and strength carry me, you are my Hero!

Love Dad

May 5th, 2013

Sunday
Ronald McDonald House
Weight: no weigh in

An Amazing Weekend!

It has been awhile since your dad or I have posted and the reason is that we have been having a great weekend as a family....finally! I just want to tell you that you are finally happy and this mood started the minute you saw your sisters. We spent the weekend playing, water sliding (you and I watched), eating and just enjoying the time as a family. You were also able to visit with Auntie Jena, Big Grandpa, Little Grandma, Grandma and Grandpa.

You start round 2 of the induction phase tomorrow morning. I have to be away until next week and the thought of being away so long is killing me. The girls need me at home with dance, soccer, dentist appointments, birthdays, etc.  Poppa will be coming up to help dad.

I will post some pictures of the weekend.

Love you to the moon and back,

Mom

May 1st and 2nd, 2013

Wednesday/Thursday
Unit 1/Holtz House
Weight: 13.1 kg
Nurse: Justine/Charmaine/Mom/Dad

And we are free!!!

Today we were able to leave the hospital!  It has been exactly one month from your diagnosis (32 days in the hospital) and you are able to feel the sun on your face.

I left early this morning from Medicine Hat knowing that you and dad were on your way out.  I also knew that needed more rubbermaids to clear out your hospital room.  When I got to your room this Wednesday, you had a smirk on your face and you looked so happy.  You showed me that you had no more tubes hooked up to you.  You show me your dinosaur (your gift from your new friend Ebin) and tell me that he is coming with us.  I explain to you that EVERYTHING has to go and I am not sure how you accumulated so much stuff in just one month.  Your dad and I pack up the rest of the room, the nurse goes over special instructions, the doc takes one more look at you and we are given the okay to go.  Your dad insists that we only need one trip to take everything to the van so he stacks the wheelchair to the top.  We will post pictures so you can see how ridiculous he looked pushing it.  I tried to get a picture of you too, but the minute I told you I was taking your picture, you would not smile.

I have to tell you, and you are probably sick of it already, but it felt pretty good pushing you out of the hospital.  I know it is only for a few days, but right now it is pretty amazing.

We arrive at Uncle Brandon and Auntie Charndra's house and it doesn't take you long to head up to the toy room with Carter.  One thing is pretty apparent, you do not have the strength that you remember.  You have a hard time standing for a long time and you are pretty shaky.  Dad or I have to be with you as you walk as you lose your balance often.  You are smiling and showing me all the toys.  You do tire quickly and need an afternoon nap.  The rest of the night you don't do much walking.  It is hard to see you like this, knowing that you use to be running circles around us.  I know that your movements today are an improvement from yesterday and you will get stronger everyday that you are out of the hospital bed.

It was a good night overall.  I was just happy to have you close to me.  You wake up a little quiet and are almost cautious for most of the day.  Again, we are finding it difficult to get you to eat and drink.  We try to get you whatever you are "craving" but you just don't have an appetite.  Ice cream sandwiches are still your favorite and this is what you end up eating for breakfast.  Luckily, the sun was out today and you were able to go out for a little outside time with Carter and Mailey.  You are definitely not the boy I saw yesterday, you are so tired today.

Your dad and I had to give you one of your medications, GCSF, by needle today.  I have to admit, I was pretty nervous.  You have a Insuflon on your arm to help guide the needle into the fleshy part of your arm, its basically a tube in your arm like an IV so we don't have to poke you every time.  Your dad holds you down and I have to administer your GCSF.  It is hard to line up the needle with the Insuflon, but I make it and slowly push the medication in.  It stings going in and it is hard to see you in pain.  It is only short lived and we are done.  Yahoo, we did it!

Tomorrow we have an appointment back at the hospital to see if you blood levels are good enough to stop the GCSF drug needed to increase your numbers.  You need to be off GCSF for 48 hours before we start the next round of chemo.  I am not too sure how you will react once you realize we are going back to the hospital.  I guess trips to the hospital are something that will soon become routine.  I am just glad we have a few days away from it.

Love you to the moon and back,

Mom and Dad

April 30th, 2013

Tuesday
Unit 1
Weight 12.9 Kg
Nurses: Justine/ Charmaine

So as your Mom said in the previous post, your mood is on the way up and so are your numbers.  Your neutraphils, at 1100 are on target of 3000 and the platelets, at 43 are on target of 75.  So, round 3 of Chemo will not start on Thursday, which was the soonest possible date.  This is not really bad news as they are hopefully discharging you tomorrow.  The hope is for some time away from the hospital with the goal to improve your mental health and maybe mine too.  However, you still have your runny nose so you are not able to go to RMH, therefore we are heading to Uncle Brandon and Aunt Chandra's.  They have graciously offered to have mom, you and I there for the next couple of days instead of going to a hotel room.  I think you are going to have a blast watching Carter and Maylie play.  Your sisters are still planning to come up for the weekend so I think you are going to have a great couple of days. Fingers crossed!!

Love,

Dad