May 30th, 2013

Thursday
Unit 1
Weight: 13.7 kg
Nurses: Amy/Laura

So, you have become an eating machine.  I cannot believe how much you can eat in a day.  This round of chemo you are not on the steroid, which usually increases appetite, but you eat like you are.  Tonight you ended up eating the supper dad brought over from RMH.  It was pizza and Greek salad and I really didn't think you would eat the salad, but you ate that too!  Your weight is increasing each day which is reassuring because if you experience any side effects this round you will  be at your highest weight since you have been in the hospital, without concern its fluids as your output has been real good as well.

You have had no reactions to the new chemo meds.  You have maintained a great BP and your mood never changes.  We haven't seen any nausea; however, you are on anti-nausea meds like usual.  There are no sores present anywhere on your body, which is good news too.

Today, you were able to sneak out of your room in between your chemo med administrations and join Mark, the music man, in the Sunshine Room.  You are not allowed to leave your room while on IV chemo meds and you have them finishing at 1:00 pm and another starting at 3:00 pm so we were able to go at 1:30 pm.  You enjoy playing the drums and singing to many of the songs.  You were so tired, but you give all your energy to enjoying your time with Mark.  I think this is one of your favorite past times when you are on the Unit.  The rest of the day we spent coloring, playing toys, completing sticker books and reading books.  We did a bit of play doh too and had an hour nap.

I wanted to let you know that when we were home we had the opportunity to meet a family that is going through a similar journey as us.  They have a 2 year old boy (almost 3) who was diagnosed with Leukemia in September 2012.  Through facebook, friends put us in contact with each other.  Anyways, we went to their house for a play date.  They have a older girl who is the same age as Gracie, so both you and Gracie had a great time playing with them.  It was really nice for dad and I to talk with them about their journey.  It is nice to share with people who get what we are going through, know the language, and just get it.  You have ALL type and he has AML, which are two totally different treatment plans.  He has a long, drawn out plan where the counts recover slowly on their own and therefore has more time in between treatments where your plan is back to back with a shorter plan.  You need GCSF to boost your counts to speed up your recovery time.  It was interesting to hear about what they have gone through already and some of their struggles and successes.  The highlight of the visit was seeing you and your new friend standing side by side at the play kitchen, just being boys.  You two have gone through so much already, but are real warriors.  Both of you are a true inspiration of courage and bravery.  I look forward to another visit when we get back to the Hat.

Well, I am hoping for another good day tomorrow!

Love you buddy,

Mom

May 29th, 2013

Wednesday
Clinic/Unit 1
Weight: 13.4 kg
Nurses: Charmaine/Paula

And we are back at it...

After a fantastic 5 days at home we needed to come back today to start your next round of chemo.  I have to tell you this was a pretty difficult morning.  You had such a good time at home that you finally relaxed and we got to see more and more of your personality.  So, when I had to tell you this morning that we were going back to the hospital you were not very happy.  You cried and cried and even had a few fits, then in clinic you kicked and punched at dad and I.  We did eventually calm you down and we talked to you about being in the hospital again and the importance of getting the meds in the hospital.  You know that eventually you will be able to go home again, once you had all the meds, but its very hard to explain it.  You spent a whole day in clinic and had a LP at around noon to start this next round of treatment.

This round of treatment is Cycle 4 and the first dose of Consolidation called CYVE.  You have five days of new chemo meds (Cytarabine,(Ara-C) and Etoposide (VR-16)) and then on day 18 you will have Methotrexate again and a 2nd LP on day 19.  Given its new meds, we are not sure how your body will react, you have never had nausea and I hope that continues.  Etoposide does have mouth sores as a side effect, but it is only common in high doses.  You are not getting a high dose of Etoposide, but given you have shown a sensitivity to them and in most sensitive patients, mouth sores occur, we are anticipating but not expecting them.  The doctors are thinking that you will have a quick recovery after the Methotrexate and hope your counts will stay up so you can start the second dose of the Consolidation right after this 21 day cycle.  This means that we probably won't be able to travel back to the Hat this time.  Not the greatest news, but during the second dose you don't get the Methotrexate on day 18 so we will probably get to go home for awhile longer.  We have to remember the closer we keep to the treatment plan the faster we will be done.

After your LP today you are starving.  When we were home you only ate chocolate chip pancakes, so dad was smart and packed a cooler full of pancakes (see picture).  Well, you surprised us by eating 9 pancakes in clinic and by the end of the day you had polished off 15 total.  It makes me sick watching you eat so many pancakes.  I don't think I will eat pancakes again!

Besides eating pancakes, you spend the day watching TV and the other people in the clinic.  We are not admitted to Unit 1 until 4:00 pm.  We end up with Rm. 9, which is a corner room on the unit.  We have a lot of windows and you can see the delivery trucks come and go.  After moving in and eating some more pancakes, you settle in and aren't too upset with having to stay again in the hospital.

You do have to start your continuous dose of Ara-C at 8:00 pm and it runs through the night.  With this chemo med you have to have eye drops every 4 hours.  These eye drops sting and you are not a fan.  This means you do have a bit of a broken sleep.  Besides all this going through the night, your dad was able to sleep in his own bed for a few hours.  You did wake up screaming at dad at 4 am, demanding that he sleep in your bed with you.  Dad stayed strong and finally got you back to sleep, in your own bed, without dad.  Way to go dad!!

Well, I hope you have a less painful round this time.  I will pray that you stay strong and your spirits stay high.  You are such a warrior!!!

Love you buddy,

Mom

May 26, 2013

Saturday
97 Scott Cres. SE
Weight 12.6 kg
Nurses: Mom, Abbi and Gracie

I am going back to Thursday and you are off all IV meds and we can walk the halls of Unit 1 free and clear.  We get out and you meet Malcom, little over 1 year old, whose parents I have been talking to from day 1 and and a new to us guy Kiya, who is also 2.5 a. old, just like you.  You seem to glow again with the the hope and ignorance of a child.  You even show Kiya, Chem Elmo, and love walking with your Mom and me more in one night that you have in the last month.

However, with every up comes a down. Walking all afternoon around the unit tires you out and you crash into bed at 8, just 15 minutes after starting a movie.  You wake up at about 10 o'clock though and start asking for the strangest thing, you want someone to poke a needle in your arm.  Its funny but at the same time you wont let go of the idea and I cant talk you out of it, even after calling your mom she cant talk you out of it.  Finally, you settle after I brush your teeth and do your vitals for you.  Tomorrow the nurses are going to get a kick out of this story, what kind a kid suddenly wants needle pokes.

So it has been a long time dream from me, mom and countless others to get a chance to come home to Medicine Hat.  On Friday morning, the day came when your ANC flew to 500 units.  I got the news from Christina while still in bed beside you (a few story's of this night to follow) I was too scared to ask but think she was to excited to keep it in Ha-Ha.  I try to play games with Mom when I text her the numbers but she can sense my excitement.  The only way I can express the way I feel is what I think others must feel getting out of jail, but it's funny as my next thought is at this rate is when do we come back.

I go clean the room at RMH to return it to them while your Mom makes final preparations with your nurse. I promptly return with the van and we are gone, there is no holding us back this time.  You stay awake for the whole drive home as we talk about cows and stuff we see as well as try to figure out how life on the outside is going to work.  Getting home around supper time mom picks up Gracie and Pappa drops off Abbi, after a long wait we are all together at home even just for a short time.

The house is strange for me though, it takes more than one try to find a cup; I have even forgotten that we had granite counter tops.  I feel like a guest in my own house, its strange how all feels and sounds.  Taking a shower has a different sound, walking around the house seems all new again and I'm finding it strange to not to hear the alarms on IV pumps or other patients.  The only way to describe it is how it must feel to get out of jail and be shocked by your new surroundings and freedom but its only been 2 months.  For now though, its just so warming to be at home as a family, nothing is more important than that to me.

You have courage but for the next few days you can just relax.

Love Dad

May 23rd, 2013

Thursday
Unit 1
Weight: 13.35
Nurses: Christina/Anja
WBC: 0.4

We are very happy to see your WBC climbing. You still have no neutrophils so you need to stay on antibiotics until we see a rise in them.  The good news is, APS was in to see you and they agree with dad and I and feel like you can go to oral morphine. The doctors also decided you are eating well enough that you do not require the TPN anymore. So, this all means that you do not need to be hooked up to the I'VE pole! We only need to hook you up for your antibiotics, which are every 8 hours.

This morning, in rounds, this is where all the professionals sit around the table and discuss your case, they decided you could have a day pass. Your dad and I are so excited. They also mentioned that if your neutrophils increase tomorrow there would a chance that you will be able to go home. I am praying that they rise. I am so excited to get you back home as it has been 2 months since you have been there. This also means dad would be home for the girls' dance recital.  I can't totally get my hopes up because your counts have gone down before and I don't want to be too disappointed.

We spend the afternoon at RMH as we need to be back to Unit 1 by 4:00 pm to get your next dose of antibiotic. You are still hesitant when we leave the hospital and at times even ask to go back. Dad and I take the opportunity to pack up our room at RMH in anticipation of your release. You have a short nap but wake up a little crabby.  It felt good to have you out of the hospital and not hooked to the I'VE pole.

When we return to the hospital you are still not happy and you say you don't want to be there. We soon calm you down and you decide to go for a walk. This is very exciting because you normally do not have much of a chance to get out of your room because you need to be on a stat monitor or taking chemo meds or have been on isolation due to a cold. You love walking past the nurses station and flashing them your smile. They all come out to greet you and you give out hugs and high fives. You meet two other boys and talk to them. One boy is 2.5 years old too. You and dad tell him about Chemo Elmo and you bring him back to your room to show him. I love that you are not shy and will talk with other patients. We do many walks to the fishes and to see the nurses. At one point you had a smiling contest with one nurse. I love seeing you so happy and comfortable at the hospital. I know, unfortunately, you still have a lot of time to spend here but the amazing nursing staff makes it a bit easier.

Well this was suppose to be a quick blog so I should sign off. We are praying and crossing our fingers your neutrophils rise tomorrow. Hopefully the next post will be from home.

Love you buddy,

Mom

May 22nd, 2013

Wednesday
Unit 1
Weight: 13.35 kg
Nurses: Micaela/Sarah
WBC: 0.2

So we are on the way up, but slowly.  One doctor thinks that since your Mucositis was so bad this time that your counts were actually climbing, but were needed to fight the Mucositis.  Anyways, we are hoping that the counts will continue to climb so that you can break out of the joint by this weekend.  We are really hoping that you could come home on Friday so Dad can come to the dance recital, but we can't focus too much on that date as it is a bit of a long shot at this point.

Your mood has definitely improved.  When I came in this afternoon you were sitting on the day bed (bed by the window) eating M & M's out of Micaela's hand.  Coloring has become your new favorite past time.  Today you managed to color with Micaela, Renee and the day before with Megan; what a little flirt.  Lol!  I will post some of your pictures you have colored with your nurses.  Also, we have finished your Elmo sticker book, you loved doing it.

Your food of choice right now is blueberry muffins.  You just want the blueberries in the muffin so we pick them out for you.  Chocolate milk is still a favorite but you do drink juice. Dad puts PEG (laxative) in your juice, and we let you know this.  Now you say, "I drink juice, it makes my poop soft."  You are too funny!

We have decreased your pain meds early this time as we can see that you are improving by the day.  Last time you were on the meds longer but it also took longer to get the right dose to provide relief.  This time we got on it right away and could reduce sooner to cause less sedation as you improved. Your swelling has come down in your face and your mood is a lot happier.  We actually hope that tomorrow we can go down to oral Morphine, which would be another step in hopes of going home.  We also decreased your TPN (total paranatal nutrition) to help increase your appetite.  Again, you have to eat more so that they will be comfortable that you are getting enough nutrition before we leave the hospital.

I have many pictures collected on my phone so I thought I would include them with this post.

Love you more then you will ever know,

Mom

May 19th and May 20th 2013

Sunday and Monday
Unit 1
Weight 13.5 Kg's
Nurses Leslie/Megan
WBC: 0.0 ANC: 0.0

Dad does not start with all that encouraging news, a continuing fever with more cultures and your WBC dropped from 0.1 to 0.0.  However, you did get good lifts off yesterday's transfusions and most levels are doing really well.

So last night was not so bad for us, but your sleep habits are still irregular and since I stay awake during the day I'm getting further behind on sleep.  Your mom and Morgan are going to watch Tanya's body building show this morning so its just you, me and the nurses.  The bad new for today is that you seem to have a hate on for me from the word go and I don't tolerate hitting or kicking no matter what is going on.  Good news is Megan is back with us today and you have really taken to her.  After your stats etc. she sits down and offers to tickle your back and tummy, you look over at me with a smirk.  I figure maybe with this much energy to spite me you might even have enough energy to eat so I take the opportunity to go get you an ice cream sandwich.  All I can find today is an Oreo one in the vending machine, bad news is the front slots on both rows is empty, this $3 ice cream sandwich is now $6, but its worth it if you eat it and you do.

After the sandwich your angry self is back. Megan has other patients that she is off caring for, but when she returns your switch flips again and you are Mr. Charm.  This time you talk Megan into sitting down on the bench with you on her lap and out comes that smirk.  After 10 or 15 minutes of cuddling her though you admit your tired and want to lay down with Dad again. You spend most of the day catching up on your sleep (6 hour nap) so I can imagine tonight won't be any different but I know you need your rest still.

Your night really was not that bad from a sleep point of view, we didn't go to bed till almost 11:00 pm, but you slept pretty good.  I did not increase your evening basal rate of Morphine over night as we had not done a lot of bolus during the day.  I am still not sure this was good or bad, you slept fine and just used a bolus to settle you when you awoke but that is really par for the course.  The logic here is to ensure we are not over loading you with morphine and just contributing to the constipation or urine retention for no reason.  Your CBC shows all your counts are still down and you are getting more red blood cells today.  When I compare this round to the last, your Mucositis started 2 days later on day 10 but we are still keeping to the same time line for counts coming back.  With that we are anticipating that you will be suffering out the same 13 days and won't get out of here till after next weekend.

Kallum, I have to tell you that watching you with Mucositis is just tearing me apart again this time.  I know its part of the journey and its the goal that is more important but being helpless all day and night not knowing if I'm interpreting your pain level correctly is agonizing.  This morning Momo and Mom stopped by so I could get some groceries as Mom is heading home.  I came back to find them playing with you and even a small smile on your face, it brings me relief.  

As always you define the word courage K

Love your Dad

May 17th and 18th, 2013

Friday and Saturday (am)
Unit 1
Weight: no change
Nurses: Kathy / Megan
WBC: 0.1 ANC: 0

Not much has changed yesterday or this morning.  Your platelets are down again as well as your red blood cells so they are thinking you may need another transfusion.  Your WBC is not climbing yet, but hoping for a change tomorrow.  We are thinking we are finally comfortable with your pain meds.  Dad and I have been working with APS and we have your basal going up at night, but back down during the day.  We can always press the PCA for an extra boules.  Once your counts start coming up we can then decrease your pain meds.

You still struggle with eating.  Drinking doesn't seem to be a problem.  Chocolate milk is your favorite by far and we order it for breakfast, lunch and supper.  You try to eat revels but want them melted just right so it is not too cold but not melted too much.  Of course, dad and I can never get it right for you.

Friday night was typical.  You were up quite a bit and had your best sleep from 5 am to 8 am. You do have naps during the day.  We are hoping you can start sleeping through the night again so you don't need so many naps during the day.

We are expecting many visitors today, which is great for dad and I.  I hope that you up for conversation and a little play time.  Your favorite game right now is the match game; you play the board game as well as the game on the iPad.

Yesterday you ended up giving Cathy a kiss near the end of her shift, Megan is still waiting today for the kiss but you are not ready just yet.  You are pretty miserable right now, but I am hoping with your nap your demeanor will change.

Lots of prayers and positive thoughts are coming your way.  I hope that with my next post your counts will be climbing, the mouth sores start healing and you are back to your old self again.

Love you to the moon and back,

Mom

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