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