Induction Day 19

The last few days have been eventful and we are praying for a peaceful, healing weekend.

Thursday -
The tole of the intense treatment Nathan received at the start of the month is showing on Nathan. His hemoglobin and platelets dropped again resulting in the doctors putting in a request for a red cell transfusion. This was ordered to drip over 4 hours and half way through, Nathan developed a nose bleed.  Amazingly enough, with 3 boys and husband we've have never had to deal with nose bleeds before and this was a doozy. I took a cold cloth to his nose, slightly tipped his head back trying to stop it and then when it wasn't looking like it was going to stop, I went to get the nurse. She came in, took a look and went to find a doctor. Not really knowing what I should be doing to get this thing to stop, it really unnerved me to have two nurses and a doctor standing in the background - watching. Not offering to help. Not providing suggestions. Thankfully my sister walked in, with lunch, and she came to my aid. Yes, 2 chartered accountants trying to get a nose bleed to stop while the medical profession stood in the background critiquing us or taking notes depending on how you want to look at it or they simply left the room depending on the moment.  It was when Nathan said he had to spit that it took Lorrie and I by surprise as he was spitting up clots.  At one point, Lorrie held the dish, I the cloth and I needed a new one. That request cleared the room so Lorrie took over so I could get clean cloths.  After 20 mins of this I requested a call be made to Nathans oncologist to determine whether platelets should be ordered.  By the time the platelets arrived it had been roughly 40 mins since the nose bleed had started and after several positions with Nathan's head and a small ice pack (1st ice pack came the size of a 8*11 pan not sure how that was going to fit on his nose), it finally stopped.  Nathan was upset to see the blood and spitting it out, and at one point when the room was full his comment was "I need my Dad. He would know what to do."  They stopped dripping the red cells in order for the platelets to be transfused.  This worked.

At 3:30pm we met with Dr Wright the radiologist who will be looking after Nathan.  His radiation will only begin once remission is determined in the bone marrow and CNS and WBC are a minimum of 1.0. So when this will be time will tell.

By the end of the day, Nathan was in good spirits. The Baum boys came for a visit and a game of cards. Auntie Lisa and Auntie Wendy came before supper. Then G&G McLeod came with Justin and Carter shortly after supper.  A cardiologist resident put on a magic show for the kids in the playroom and Nathan assisted a couple times.  All the boys enjoyed this.

During this time a Doctor from Infectious Disease came to discuss the bug found in Nathan's blood - pseudomonos - a bug from the intestinal tract that, when is presented the opportunity i.e. no neutrophils, moves into the blood stream.  They tested the bug in a petri dish to determine which penicilins would kill the bug so Nathan is being treated with Piptaz and Tobramycin.

I left Nathan in a good mood, without fever for several hours, so thought he and Arron would have a good night.

Friday -
Last night was not a good night.  Nathan started to get a sore side in the evening and by midnight he was often in quite a bit of pain. He would even cry out in his sleep and the pain awakened him every 40 mins or so.  By about 5am, the nurse finally called in a resident to check out Nathan, and she was really confused as the pain wasn't near any organs.  An hour later, the head pediatric resident came in to check and she was a little bewildered as well.  They updated Dr Ali but didn't come up with much.  After our teleconference with Dr Lewis (more on that later), Dr Mpofu came up to check out Nathan.  He ordered another urine sample and an ultrasound.  We went down for the ultrasound during which Nathan was falling asleep from his lack of sleep the night before and the morophine given for pain.  The ultrasound showed a thickening of his intestine and some swelling there and that is what they are guessing is causing the pain.  They think that now that is the site of the infection and they aren't going to change the antibiotics he is getting as they should handle it fine.  They are now giving him morphine to help cope with the pain and Nathan has had a lot of pain.  He is a tough kid so when he is crying and writhing in pain you know it must hurt.

Mike Babcock, coach of the Detroit Red Wings and Canada's Olympic team, showed up in the playroom at 3pm to visit with the kids.  He was awesome with them and has a great family that were also very good with the kids.  Justin, Carter and Nathan soaked up the attention they got and were excited about the hats and mini-sticks they received.  It was a nice break for Nathan but not even before it was over he wanted to head back to his room because his tummy hurt.  He managed to tough it out enough to go back to the playroom to register his new Webkinz that his auntie bought him.  You can fight through the pain for some computer time as it is often hard to get the computer free. Nathan had a nap through supper and woke up in a good mood.  He had an appetite and wanted to play cards.  And then a movie of course.

One unfortunate mishap today is someone decided the bag of ham sandwiches i had made for Nathan and was keeping in the community fridge and were clearly labeled went missing from the fridge.  It amazes me that people will do that in this setting.  Since we are looking at a lot more hospital stays, I think its time to invest in an electric cooler.  On a positive note, Arron was impressed when he saw one mom with an electric skillet making eggs and bacon for her son in the kitchen.  You do anything to keep your child eating when they are hungry.

Induction Day 17

Shelley has been spending the most time with Nathan so she has the most knowledge to post but... she has been spending a lot of time with Nathan and has had no time to post.  Shelley slept (I use that term loosely) at the hospital last night and will again tonight.  Tomorrow will be my night.

Nathan has been getting fevers pretty steady and this time, for the first time, his blood culture came back positive.  He does have a bug we just don't know if it is a good thing or bad thing yet... it's good that we know what is causing and aren't guessing like every other time, but can we control it?  That we don't know yet.  Nathan's coutns are pretty much at zero.  Neutrophils were 0.00, WBC was .31 and platelets were down to 17.  They gave Nathan plasma and platelets today as he did have leg needles this afternoon.  Nathan absolutely rocked the needles today, did them together and didn't show any pain - what a tough little man.

Tomorrow we meet with the radiation doctor to determine when Nathan will start his radiation treatment on his testes.  Friday morning we finally get to talk with Dr Lewis - we better have some good questions prepared so that all of our pestering is worth while!

I talked with Carter and Justin tonight and they are having a good time at G&G Mcleods.  Please continue to pray for our family.

Induction Day 16

Back in the hospital we go.  Nathan complained a few times that his heart hurt today, and then by about 7pm he developed a fever.  We lined things up, stopped for McDonalds on the way to the hospital and were admitted by 9pm.  Nathan has had an x-ray and electrocardiogram already, he actually fell asleep while they were doing the electrocardiogram about 11pm.

Thankfully we had nurse Adam tonight as he is good at accessing Nathan's port.  We had no issues with that.  Adam then told us Nathan would be started on Taz which is the big gun antibiotic.  And usually means a 14 day stay for us :-(

We'll find out more tomorrow.

Induction Day 15

Its been a long day so am going to do it by the numbers of our day:

5:10 am - the time Nathan wanted to get up for the day (steroids causes sleeplessness)

6:30 am - the time my alarm went off and Nathan came into our bedroom, dressed for the day, with emla cream in hand asking "is this the right one"

8:15 am - 7 - the number of dishes I packed for Nathan's "breakfast, snack and lunch" to be had at the clinic - (1) cereal and milk in a thermos, (2) chicken noodle soup (3) pizza (4) cheese noodles with steak (5) pear (6) carrots and brocoli with ranch dip (7) cookies (and yes, he ate it all!)

10:30 am - the time the platelet transfusion started

10:45 am - anistheisiologist was 45 mins late for Nathan's spinal treatment - torture for a child on steroids who can't eat until after his "sleep". By this time Nathan has asked at least 50 times if he could eat yet and when told no, 50 responses of "you are so mean!" Yes I am because I love him.

11:15 am - the time Nathan was able to eat by

12:45 pm - the time the red blood cell transfusion started (To everyone who donates blood on a regular basis, thank you - you saved our son again.)



1:30 pm - the time Nathan decided he needed a nap so had one

4:23 pm - the time Nathan's day ended at the clinic (8 hours later)

4:52 pm - the time we stopped for Blizzards as Nathan just had to have one (he ate his before supper, we saved ours for after supper - needless to say I didn't get to eat mine - Nathan had it)

0.01 - the number of neutrophils (infection fighting cells) in Nathan's body which means chemo is working in wiping out the White Blood Cells but risk of fever and infection

3 - was the number of times we took his temperature today

25 or so - the number of times Nathan said "Mom - I need you!"
25 or so - the number of times he said he loved me.
15 or so - the number of times I cried today.
100 or so - the number of times I prayed today.

Induction Day 14

A lot of stuff happens in a few days but we still don't know as much as we'd like.  Friday we went into the clinic for platelets and leg needles and Nathan did wonderfully well.  He has started to put on his own Emla cream, and take it off when we get there.  He breezed through the leg needles again Friday so at least there is a positive there.  They informed us that we'd have a video conference with Dr Lewis on the 21st of July.  That was still two weeks away!  We wanted, and still want, more information before then as we are being asked to make major decisions based on little to no information and that is not sitting well with us.  Hopefully they'll get something else arranged before we end up just driving down there and demanding to meet.

On Saturday I ventured back up to Carrot River where friends and family put on a benefit for Nathan and our family.  They had wonderful weather, a great golf course with 112 golfers participating, a delicious supper with awesome entertainment.  All those superlatives aren't enough to describe the people though -everyone there was just simply beyond words.  From my family and friends who set up both the farm yard and various golfing events, to all the people that donated items or their time, to the people who worked the benefit and finally to the people stepping up at the auction - the response was overwhelming.   The band was great and the party was in full swing when I left. You all know that you played a big part and please know the heartfelt gratitude going from our family to all of yours.   Incredible!

While I was in Carrot River golfing Shelley tried to have a "normal day" with the boys.  They did a kid project at Home Depot, some crafts from Michaels and picked up some food to have a picnic in the park. Nathan was feeling well so had to use the opportunity while it was present. A good afternoon was had and they had a movie night in the evening.  Shelley said it was a great day.  On Sunday we got home early in the afternoon and I set up the pool for the boys on the front lawn.  They had a blast in it.  Nathan tends to overdo it a bit, so it is a real balancing act for Shelley and I to get him to stop something while he is still good vs waiting for the lower energy and poor feeling he gets when he gets too far into an activity.  This evening he had to have a rest but it wasn't very long before he was wondering what his brothers were doing and was back outside taking part in some badminton.

Tomorrow is a longer day at the clinic.  Nathan will be getting his triple intrathecal therapy, leg needles, and vincristine.  Oh did I mention we are onto drug number 13 now?  He is now having Nyastatin to help with sores in his mouth once again. We continue to pray that Nathan's body will handle the treatments, that one of us is a match and that we will have a sense of direction soon.

Induction Day 10

If bad news comes in threes then we just got our third one out of the way.

The biopsy results on Nathan's testicle came back positive - there were leukemic cells present inside his testes.  We were hoping that the torsion of the appendix epidydimus was the sole cause of his swelling and discomfort, but unfortunately that was not it.  We are not completely sure how this affects everything yet, other than now we know that Nathan will require radiation therapy to his testes.  Dr Ali was not certain if it would be after induction or sometime in the next few weeks.  I know we have to keep rolling with it, but it sure would be nice if there were answers to all these questions - this is getting more and more frustrating.

Other than that we had a very interesting morning.  Nathan decided that he was NOT going for more leg needles today and Shelley could not convince him to get moving and allow her to put the Emla cream on his legs.  They phoned me, and though Nathan knew that he needed the treatments, and he agreed that he had to get them, he still wasn't going.... While we were talking this through with him, he took the Emla cream and put it on his own thighs and covered it up with an opsite covering.  He then proceeded to put the cream over his port, bandaged that up and was ready to go.  Kind of surprised Shelley and I, but Nathan is all about control.  He wants to feel like he has some control over what is happening to his body and who can fault that.  Shelley and Nathan met me at the Cancer center a little after our 8:30 appointment, as it was closer to 9 they were waiting for us, and we went right into the first room.  We discussed how he was going to get the leg needles, and we assured him that nurse Andrea was way better than the ped nurses and he finally agreed to get going.  We did his left leg first,(with him taking off the opsite covering and removing the cream) and it hurt a bit but he breathed through it and kept control.  When we moved over to the right leg, he was busy making funny faces at his mother pretending that it hurt (or really pretending that it did not) and that one was a piece of cake.  He was also very agreeable at getting his port accessed - even his counting was to a small number and darn quick.  He even was helpful when Dr Ali did a checkup on him and did everything as asked when asked - which is a little unusual.  Did we mention yet that his temperament seems to be a lot better on the Prednisone steroid than it was on the Dexamethasone.

He was given fresh frozen plasma that takes a couple hours so he and his mother had a pretty good morning, at least playing and behaving wise.  Shelley and I did take this latest news hard at first, and it is still tough to understand why we keep getting more piled onto an overflowing plate but with the support and love from family and friends I'm sure we will get through this one too.  (took awhile to get my positive attitude going on this one today but I think I've got it there.)

Nathan has nothing on Thursday but he will get platelets before his leg needles on Friday morning.  We are still hopeful that we will finally get to talk to Dr Lewis from Calgary before too long.  It is starting to feel like Nathan's treatment isn't as urgent/important as it once was to the medical staff and that is starting to get to us.

Induction Day 8

Today has been a long day... the entire family was at the clinic for 9am as Nathan was scheduled to have a spinal treatment today. With his platelets all over the board, we asked whether they would proceed or wait for blood work to come back.  His platelets were 43 on Saturday and the magic number we were told is 50. So on the assumption that they would reduce further, we waited for blood work to come back switching Nathan's treatment time with another child's. It was a good thing we waited as his platelets came in at 19! Needless to say Nathan received another platelet transfusion today. He received extra sleepy medication today in order to have the leg needles given to him while he was sleeping. He felt horrible today and had a headache right after the treatment, an indication he sat up too soon after having it.  Although nauseated and tired, he managed to sleep this afternoon putting him in a really good mood for the evening. Nathan will have a triple intrathecal treatment every Monday during this phase.

The boys were great at the clinic today. Nathan walked in talking over his shoulder to his brothers: "follow me boys", since this was his domain.  They enjoyed the Starlite system together and then when asked to go in to get the topical cream on their arms for the HLA testing they did great.  Carter was anxious as he was thinking more about the needle and Justin was relaxed as he didn't understand. Arron went first followed by Carter and Justin putting me last.  The needles the clinic uses to draw blood are a lot shorter than when you go for blood work.  The nurses had to fill 2 tubes - somewhere between 8-10mls- each. Carter seemed to flow slowly so actually needed two pokes to complete his blood work but he did really well and the nurses were great at providing distractions for them.  Justin was great, and teased Carter at the end that he did better than him but they both did wonderful. Since I was last the boys wanted to go out to play the Wii rather than wait and I was grateful as I hate needles :). It didn't hurt but by that point my anxiety levels were high and I was grateful for a few minutes to let the tears fall.  Now we wait and pray that one of us is a match.

Nathan's white blood cells were at 0.58 today and neutrophils of 0.18.  He will have leg needles and fresh frozen plasma on Wed and leg needles on Friday, so hopefully his counts will stabilize and only the good ones will come back. We also pray for no fever.