Stem Cell Harvest Day 2!

(This picture is from near the end, inside the yellow bio hazard bag are the fruits of our labour.)

Wow, I'm only a few days behind here but I feel like I’m trying to conjure up some distant memory. Charlotte’s apheresis was on Monday and it was a long day for all of us. But it went well and we should never have to do it again. When we were told it would take about 5 hours, they neglected to mention that is just the time that the machine needs to run! There were also 2 hours to set up and 2 hours to unhook and monitor her afterwards.
We started the whole process at 9:00. We were set up in ICU this time around, so that things could be responded to quicker in case problems should arise. Things got off to a slow start again, we waited on the donor blood to show up so the machine could be primed, then we waited on Charlotte to respond to her anaesthetic. Apparently she does not take anaesthetic well; we ended up tinkering around with the combination of drugs and doses all day to try and keep her sedated “just enough.” Charlotte was on a constant dose of two different sedation drugs, but we had to keep increasing it hourly as she would keep waking up, our doctor started to raise her eyebrows every time she was called in to order more drugs.

(She should be out by now... why does she look so happy?)

Her lines were open and worked well during the harvest. This was a real blessing because it meant that we did not have to put in a femoral (groin) line for the procedure. Another answer to prayer was that her blood counts were even better than they had been on Friday, and the higher her counts the faster the apheresis can go. So all in all it was (only) a 9 hour day.


Rob snuck in and took this in the morning, she tends to wake up around 6am and think she need to some sleep in my bed... and shes so cute (and I'm so tired) that she usually gets away with it. You can see here how much her hair has thinned out already.
Here she is... pretty loopy but not sleeping! *Oh doctor, we need some more drugs.* And yes, all those lines are filled with blood, plus there is more in the base of the machine.

Finally shes out. On her right toe is a monitor for pulse and oxygen, on her leg is the blood pressure cuff. Her left leg has the IV for her drugs. The four lines coming out on her left are what is hooked up to the machine. The lines coming out on her right side were those little sticky ones they put all over her chest to monitor her rates.

And here is the garbage can afterwards... it was empty when we had started that morning! That big oval was in the base of the machine, all her blood goes through that and as it spins the centripetal force separates out the precious cells we need. Thank you so very much to to donor of the blood that we needed to prime this machine! As you can see Charlotte would not have had enough in her to complete the cycle. We ask all family and friends: if you ever get a chance to donate blood please take it! Thank you so much to all of you who already do so.

A Cute sister story

Just a cute story from when Yolanda was still here.

The day that Charlotte had her first blood transfusion was a long day of sitting in the hospital. (Yolanda was at her Opa and Omas house) The transfusion took three hours with a half hour after to monitor her. Every 15 min for the first hour they had to do a blood pressure check, we call them "arm hugs." Charlotte does not really like arm hugs that much but we found if we sing a little song during them it holds her still enough to get a reading. The nurses usually picked a song and although we had quite a few different nurses during the day we ended up with Twinkle Twinkle little star a lot. She would happily stick out her arm and we would all sing twinkle twinkle.
Later that night we got Yolanda back and we were getting the girls ready for bed, they were playing around snuggling into the blankets and playing peek a boo. Then Yolanda sits up and says "OK Charlotte, lets sing a song." Then she starts to sing Twinkle twinkle little star.... and Charlotte holds out her arm, waiting patiently for someone to come and wrap the arm hug band on her.

Here they are at the RMcD House, waiting for Ice Cream. A lady from Marble Slab came in to "make" ice cream for everyone, it was great! The kids (and their parents) all got their choice of ice cream blended their choice of toppings. What a treat. Its hard to be away from home for so long but all the activities and things going on at the house sure help us get through the long days.

Stem Cell Harvest Day

Today was going to be a long day... and it delivered! Long and FRUSTRATING! It was her apheresis (stem cell harvest) day. For more about that see April 29th posting called “Our Medical Plan.”

We have been pushing Charlotte’s blood counts with a drug called GCSF, after the “mean” chemo drugs were over she starts this to try and boost her system. They monitor her counts trying to get them up to a certain level by a certain day so that they can do a stem cell harvest. Her counts will make a peak and valley kind of chart and we need to time her big “peak” with the harvest day, to make it more fun they only like to harvest three days of the week. The higher her counts the better (and quicker) her harvest will go. So we pushed her GCSF dose up to double this week to try and get her ready in time. Yesterday she was quite low so she had a blood transfusion to give her a boost.

The apheresis procedure depletes platelets so she was given a transfusion of that... unfortunately the blood transfusion took so long that we didn’t get started with the platelets until 9pm! Part way through she had a mild reaction. Poor Charlotte, things have not been going her way. She got really cold and shivery, and they could not get a normal blood pressure reading, everything was unbelievably low... too low even for how she was doing so they were obviously inaccurate. They stopped everything and tried to get her to go to bed, poor rob got stuck with another rough night. (We have been alternating who sleeps at the hospital.) She needed the oxygen on some of the night, a horrible wheezing machine. I don’t think either of them got much sleep.

At 6am the nurse snuck in to get some blood work to send into the lab to check that her counts were high enough to start her “harvest” today. At 8am when the nurse technician was getting ready to go we got a call that the lab did not get enough blood, they would have to re-send samples down to check before we could start. The technician huffed a bit at that, she had come from another hospital, and anticipated it to be a long enough day without these delays I think. She got the machine set up, was very patient with us and answered all of Robs questions, miles of tubes were primed with donor blood. An adult would have enough blood to fill the machine while it filters it and pumps it back in, but Charlotte’s body would be drained too much. Charlotte had an extra IV line put in her arm to administer any drugs during this whole procedure since her main lines would be tied up. For once the nurses got an IV in on their first try! Once her second blood work came back with her counts the technician pulled out her calculator and told us it should take about 5 hours once she is up and running on the machine. I think it was around 11 by the time everything was running and it was actually harvesting her stem cells.

Charlotte was much too alert and wiggly during the first few minutes so she was given some Adavan to help her calm down. We were told that the dose she was given should hold her calm for about 4 hours, she fell asleep for a bit and when she woke up boy was she loopy! It wore off in under two hours and she started wiggling again, this kicked off the machine. So they gave her another dose. But by the time she was groggy, we could not get the machine to draw her blood again! After much flushing of her lines and nurses trying to pull blood, doctors were called and more staff... I think we had 6 or 7 medical staff in the room, and we had to call it quits. This left us all frustrated and deflated, except for Charlotte who was now as high as a kite and giggling to herself. She was a great laugh, she started a game of peek-a-boo around the door, with a big “HI” and waving away each time she peeked, but no one was there. Then her head would flop back over her shoulder to see us and she would have a big smile, then her eyes would focus on something invisible to the rest of us and she would track it around the room saying “hi, hi, hi.” It was much needed comic relief. By the time the drugs wore off she had an amazing appetite and ate more than she has for the last three days combined, that was a plus!

So now we are hoping that her counts will still be high enough to do this all again on Monday. This time we will be in ICU, she will likely have full anaesthetic, and a femoral (groin) line will have to be put in, another platelet transfusion will likely be needed right before, and of course more blood needed to prime the system. We basically start all over. The cells that they did harvest will be kept and used, hopefully that will make Mondays harvest quicker... but that is my thoughts and not anything that the doctor said.

We did a chest x-ray to see if there was something funny with her line. They found a little blood clot in her line, which has since been hit with a “clot buster” drug. Hopefully it will still be clear in the morning.

But it is long past bedtime and since it is my turn here at the hospital I better get some sleep in while I can!

A weeks worth of posts

We have had a lot going on in the last few days, so I’m hoping to get it all sorted out in my head here!
Jumping on Daddy.....

Yolanda was up here last Tuesday, it was nice to have her here but we were (secretly) a bit relieved to see her go back to Grandma and Grandpas house yesterday. Things got so busy here with Charlotte back and forth to the hospital that Yolanda got a little antsy. But we had a lot of fun this past week though, did tonnes of crafts and painting in the RMcD House craft room. What a sweetheart she has been, trying to be so helpful. The girls have had so much fun just being together, there is an awesome huge playroom here. Yolanda and I had a really nice outing on Sunday. Someone had donated two Stars on Ice tickets to the house that were passed on to us. It was an amazing show, it took me a song or two to collect myself once the lights went down... the craziness of this all just sort of swept over. Yolanda loved all the “princesses” skating around and she named them all according to the colour of their dresses. Thank you to whoever donated those tickets!

As far as Charlottes medical stuff goes... We were told that days 7-14 of her chemo cycle would be the toughest on her and her immune system. Day 7 was May 6th we took a look at her tearing around with her sister and thought “Wow! If this is her low point we can definitely handle this.” Unfortunately it went downhill from there. Every other day we were to come into the clinic for a blood test so we could check her levels, they went down as predicted... then a little lower than they like to see. She had a blood transfusion that while long and boring was wonderfully uneventful. Luckily Yolanda was out with her Oma and Opa in Bragg Creek that day because of a scare the night before. (Rob thought he had come down with a cold and because Charlotte had an immunity of zero we are pretty paranoid. So we thought it would be best for him to be away for a day or two at least until we were sure if he was sick or not. He dropped Yolanda off so that I would only have Charlotte to worry about.) Luckily the next morning Rob felt better so he was there for our long day in the clinic! It was amazing to see how much she perked up with some blood in her, the colour came back to her cheeks and she was cherry again. Anyways the next blood test showed that her platelets were too low, so a platelet transfusion was ordered. Whenever transfusions take place there is the possibility for her body to react negatively, every single time she gets blood from other donors it’s a bit of a risk.

The night of her platelet transfusion she had a really weird fever-temperature thing going on. We thought it was maybe the thermometer, or a reaction to the platelets. We would take a reading that said 37.4, then two min later it said 38.1, then back to 37something, then up again. This went on and on. We are supposed to come in if she reads over 38 for an hour, or 38.3 come in right away. So we called the doctor on call (it was like 9:30pm) and he said to come in just to check. They checked her out 37.6, 37.8, 37.5 monitored her for an hour and thought she seemed ok. They were about to send her home. Rob (for those of you who don’t know him) likes to fiddle with things... like thermometers for instance. He kept checking her out too, playing around with their fancy thermometer, and noticed that one side of her head always read hotter than the other side. The nurse always took the temperature on her left side which gave a nice reading, by the time rob pointed it out her right side was reading 38.9! This caused quite the alarm... and still days later no one we have talked to has ever seen this big of a gap. Anyways Charlotte was admitted and given antibiotics right away. Her blood cultures have not found anything specifically wrong that would cause the fever, but it seems to have gone away. Either the antibiotics did the trick or it went away on its own. It was a bit of a mystery fever bouncing around, not really showing anything else.

Guess what we figured out yesterday: Charlottes teething! Oh goody, maybe it was just that all along.

Trying to encourage her to eat something! I guess chemo changes how things taste (besides making her nauseous) all she wanted to eat was dill pickle chips for two days.

Update from our scare

Just a quick update…
Our scare on her last chemo session has calmed down (in our minds) at least for now. After the dust settled and our doctors had a chance to review everything we were given some options. They are thinking that it was less likely an allergic reaction and more likely Hypotension that was brought on by the drug. This is based on the fact that she responded so quickly once they took her off the drug. Hypotension decreases her blood pressure scary fast but because that was the only thing that looked wrong it’s likely that. If it had been a true allergic reaction her heat would have gone crazy too and she would have needed more drugs to enable her to have come around so fast.

So now where does that put us? We will still likely be able to use this drug for her future sessions. Which is good because this is the drug used in all the studies, they didn’t really know what they would do if we could not use it. There isn’t another drug that would exactly replace what this one does, so that would leave the outcome of the whole treatment a little unpredictable. I guess this drug is known for causing hypotension if it is administered into the system too fast. In an adult it is administered over half an hour, so for a little one they put the dose in over an hour. For Charlotte’s next treatment they plan to administer it over two hours with constant vital checks. I guess we know how quickly she can recover from this, so even if something went wrong again it would likely be noticed even sooner and counteracted faster. We don’t expect that to happen at all though.

So we were discharged (as far as the Ronald McDonald House) Monday night and Yolanda was able to make it up her on Tuesday. It has been great to have the girls together again; they have been having so much fun together here in all the playrooms.
I thought I should give a quick update on the outcome of our scare, but now it’s off to bed!

Have a great weekend everyone,
Allison

Today was scary... but amazing too!

Today, May 1.
As far as the Chemo goes today was a bit scary.

This is day three (last day of drugs for this cycle) and she was to get four different drugs today. She has had all four in the last two days without any problems, besides some vomiting- but we can handle that! One of the drugs administered has the potential for allergic reaction... sending kids into anaphylactic shock. Its very rare but because its life threatening the protocol is that a nurse will stand bedside for the entire hour it takes for the drug to be administered. I guess some hospitals have pulled this because a problem is so very rare and it takes up so much nursing time. But today the protection of the Alberta Children's Hospitals strict protocol was on our side! During this time blood pressure and vitals are done every 15 min, she did great for the first one and then started to nod off in her daddys arms. While the drug was going in our nurse started doing some teaching so we could learn how to take care of her port and line for once we are discharged. We need to know how to clean it, change the caps, change the dressing around it, how to use the heparin lock. Charlotte did one head nod like she was falling asleep and then just tucked into Rob, asleep. I kind of thought we had just bored her with all the teaching. Our nurse asked if it was nap time and she should be sleepy, but by the time we had answered "no" she was already shouting in Charlotte's ear and tugging on her shoulder. Charlotte did not respond. Before we knew it our nurse had her blood pressure read-it was very very low, stopped the evil drug, started the "anti-allergic-reaction-drug," called the doctors, debriefed with all-there was an extra 6 people in the room... and Charlotte was waking up! This was in a matter of 5 minutes. It all went very fast, and excruciatingly slow. Within the next ten minutes she was sitting back up and playing peek-a-boo with one of the "extra" nurses. It was pretty amazing to see how she could bounce back.

The rest of Charlotte's drugs were delayed for a couple of hours to ensure that we were out of the woods with this reaction. The rest of them went well. Now our (doctors) biggest concern will be what to do about this drug for her next two cycles. Please pray for guidance for the doctors. We have over two weeks to come up with a new plan. It sounds like some of the options are: to introduce another drug before hand that will hopefully let her body accept this one again, try different doses and rates of this drug-maybe it just went in too fast they said, or find out if there is something else that can be used in place. Our main fear is that we wont know what will really work until we try it. That means we might have to risk this again. I'm sure that her safety will be covered even better for her next rounds, but its still scary to think about. The doctor said this this is the first case of this they have had here in well over a year. So we will be venturing into a less known territory.

This definitely reminds us that we are in a great hospital that thankfully refuses to "cut corners" and puts their kids first. Our nurses are amazing and really on the ball. We are surrounded by loving supportive people (you) whose prayers and well wishes help us get through each day. And, as a friend put it so well, the super-natural strength from God that is carrying us through all of this.

Before all that happened we had a visit from the "weekend" doctor who said she was doing really well and that at this rate we might even be discharged (as far as the Ronald McDonald house) by Monday or Tuesday. That is as long as our teaching was done and we had sufficient time to practice, and then do each step on Charlotte in front of the nurses. We got part way through trying out the cap changes and heparin flush on the dummy before we move on to trying it on Charlotte, now we just have to try the scariest step of cleaning the whole dressing over the port. Doing it on the dummy is easy, but he sits pretty still and does not complain when we rip tape or bandages off him!
I'm not sure what today's turn of events will mean for our discharge date, but we were really happy to hear that will be an option. We were told not to expect to go "home" this cycle. I guess we will see what our primary doctor and nurse have to say on Monday.

Goodnight to all,
We love you,
From Rob, Allison and Charlotte