Nadia's Quest

Today Nadia had a blood transfusion. Thank you Donors!

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How will we know that the new cells are growing (engraftment)?

According to our hospital handbook, it usually takes between 14-21 days before there are signs of engraftment, which means Nadia will start making her own blood cells and the counts start to go up. But since Nadia had a cord blood donor, they told us that it will likely take a bit longer.

The white blood cells (including neutrophils) are usually the first to grow, and platelets come last. We are told to expect the blood counts to go up and down over time, and this is normal. Once her neutrophil counts start to increase, Nadia will be better able to fight off infections.

White blood cells (including neutrophils) are essentially our immune system. When Nadia’s immune system starts to grow from the donor stem cells, it will be brand new. Her new immune system will actually be more delicate than that of a newborn child. This is because newborns have some residual antibodies from their mother’s immune system. These antibodies don’t last forever, and babies continue to get some from their mother’s breastmilk, but they certainly help and give the new immune system some ‘breathing space’ where it can be exposed to some viruses, and built up its own antibodies while mom’s antibodies do the dirty work. Nadia will not have any of these antibodies. Her new immune system will actually be more delicate than that of a newborn. She will be fending for herself.

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Nadia bossing mom around, telling here where the decorations go.

Panoramas of the finished product (click on images to see larger versions):

Daddy-daughter snuggle

Briefly, we are cheering for WBC to increase past 0.5, and then we will start cheering for ANC to increase past 0.5.

Right now there is a battle going on inside Nadia. The home team has been knocked down by chemotherapy and can no longer make new blood cells. So the home team cannot create reinforcements. The new stem cells are battling for position, and have the advantage of being able to call on reinforcements – these ‘visiting’ stem cells can make new blood cells. It is a delicate balance, these new stem cells must not be allowed to be too aggressive, or they will also start attacking Nadia’s organs. This is why IVy has increased in size. Nadia is getting many different types of medications, fluids, and immunosuppressants. These immunosuppressants attack the home team and the visitors alike, but the visitors can make reinforcements, so they have an advantage.

In order to monitor how things are going and determine when the new immune system is functioning (and the new stem cells are engrafted), blood is taken daily and different types of blood cells are counted. We have been updating Nadia’s daily blood counts on our twitter account (@nadiasquest), and here is what they all mean:

WBC = White blood cell count. A healthy person has about 7000 of these per microlitre of blood. These cells help fight off infection. In our terms this is ‘7’. Today Nadia’s WBC was 0.1. We are cheering for these numbers to increase. Once they reach about 0.5 they are able to start counting ANC, which is a type of white blood cell.

hgb = Hemoglobin, which is a measure of red blood cells. These cells carry oxygen around the body. Healthy people have more than 120 grams of hemoglobin per litre of blood. Until Nadia’s bone marrow starts making blood cells again, Nadia will receive regular red blood cell transfusions. Today her count was 82, and they like to perform transfusions when this number in the 70s (or so, they take into account how Nadia is doing, if she looks tired or pale, etc).

PLT = Platelets. These help with blood clotting. Nadia has always had a low count, and her easy bruising was our hint that something was wrong. A healthy person has more than 150,000 platelets per microlitre of blood. When reporting we drop the last 3 zeros and call it 150. For months after Nadia’s diagnosis her platelets were less than 10. Even as low as 4. Today her count was 45 and they last gave her a platelet transfusion when they were down at 14. Until Nadia starts creating these cells, she will receive regular platelet transfusions.

ANC = absolute neutrophil count. Neutrophils are a common white blood cell that play an important role in fighting infection. We need these to leave isolation and eventually return to the real world. Healthy people have more than 2500 per microlitre of blood. We shorten this to 2.5. When Nadia’s ANC is greater than 0.5 for two consecutive days, she will be able to leave isolation, and hopefully soon after the hospital. ANC cannot be counted until WBC is greater than 0.5. So today Nadia’s ANC was 0. We are cheering for these to increase.

Bone marrow stem cells are responsible for making all these different blood cells. It is pretty cool!

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Mommy-daughter evening snuggle time before bed

Quickly escalated to play time 😉

Well today was pretty uneventful and kinda boring (something we want everyday to look like from here on in).  Thor got to spend the night at the hospital and mommy got to sleep diagnally in a queen sized bed at the condo! YESSS. Vancouver got hit with some major snow fall on the weekend and monday, so every thing was really melting with the the sun shinning today. It was beautiful, puts a little skip in your step when the weather is like this. Nadia had a good day she got some platelets today.

Nothing to report really, it is a waiting game from here on in. Everyday they will take blood from Nadia to see what all her levels are at. It will take weeks for us to see any results. So basically, the Jeopardy theme song is constantly playing in the background. Her appetite still isn’t great. So far no signs of mouth sores, but she did keep pointing to her one side of her mouth today, we had a good look and saw nothing. which is a relief, but also a fine balance.

Kids by this stage of transplant usually have mouth sores and a feeding tube, but because Nadia has only had 10 days of a reduced intensity chemo, they hope not to see any sores. They can’t wait too long to insert a feeding tube if her sores become too much, as it will be too painful to insert for her, also because she has slowed with her eating they want to make sure she is getting enough calories. We would prefer her not to have one, as it will just be one more line to deal with and stress over, but if she needs it she needs it. So we will talk with the doctor tomorrow about it and have them have a look at her mouth. It is hard to feed a 2 yr old at the best of times, Nadia ALWAYS eats better when we eat with her, and that isn’t possible in the isolation room, and lets face it, hospital food is crap.

Other than that it has been boring and uneventful, and we would like to keep it that way.

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We will be posting Nadia’s counts every day, and we will describe what all the numbers mean in a future post, once we get a clearer idea from our doctors.

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If you are not on facebook, you should read Tara’s very moving post on Nadia’s transplant from a mom’s perspective.

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The awesome calendar poster our wonderful nurses made to track Nadia’s blood count progress.

This morning’s numbers, along with an indication that Nadia received platelets today (Thank You Donors!). So we expect the platelets (PLT) to be up for sure tomorrow.

Today Nadia got stem cells. These cells came from cord blood. This means that some thoughtful mother donated her (or ‘their’ if you include the baby) placenta and umbilical cord to a cord blood registry, similar to one finally starting in Canada, so that they might one day save a life. We will never know this donor, and we will be forever grateful. Sometimes the kindness of strangers is astonishing!

Like Tara says: “Push once give life twice!”.

The actual transfusion was interesting. It took just over 10 minutes. The doctor held the bag and let the cells fall into Nadia’s body through gravity. They even flushed the bag with saline to try and get every last cell!

The cord blood came onto the ward in a simple cooler. The type you would use to carry your lunch around in. The bag itself contained only 50 mL of cord blood (containing stem cells). That’s it. 50 mL. It is absolutely amazing that this small volume of fluid has the ability to save Nadia’s life.

50 mL

50 mL with HUGE impact.

When the new stem cells move into the bone marrow and start producing blood, they will be the same blood as the donor. This means that Nadia’s blood type will change from O+ to A+. This means that Nadia’s blood will contain the DNA of a stranger (although all her other cells, like skin cells, etc, will have Nadia’s original DNA). It is such an amazing thing to consider! Simply miraculous that this procedure can work at all! And only using 50 mL.

Nadia was watched closely the remainder of the day for any adverse reactions. Right after the transplant she was kind of groggy. Later on a bit of juice seemed to fill her full of energy.

The cord blood came with an interesting odour. Kind of a cross between blood and oysters. And the smell stayed around a long time after the transplant. This is because the blood product is being dismantled by Nadia’s system, even through her lungs. This means her breath and diapers smell like oysters! Ewwwww. 😉

Thank you everyone at Children’s hospital for bringing us this far. For figuring out Nadia’s diagnosis, for carefully following her health progression, for finding a stem cell match, for tolerating all of Thor’s never-ending questions, for getting us ready for transplant these past 2 weeks, and for performing the transplant today. Our job together is far from finished, and we still have much time together. Regardless, thank you to all the doctors, nurses, cleaning staff, lunch room, etc for everything so far! THANK YOU.

Really, all things considered, it was a good day.

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Nadia, with the help of Daniel Tiger and friends, is ready for transplant

Stem cell transplant action video (WARNING – anticlimactic)

Still shot of stem cell transplant

Nadia getting some well deserved rest after the transplant

Tomorrow is the big day. Although the last 2 days we were not in isolation, Nadia’s counts were so low that we were not allowed in the playroom if anyone else was in there. We made it a few times yesterday and not at all today. We were essentially in isolation, but without the rigmarole.

This afternoon we moved into isolation officially. This meant giving Nadia a bath and putting her in the isolation room for the long term. Getting ourselves, and any items, into the isolation room is a bit complicated.

There is an anti-room where everything(body) gets cleaned. We need to wash our hands for a minute (timed) before putting on a gown and entering the room. All the items going into the room need to be wiped down with super-toxic  wipes. This means we have a plastic box, wiped down, and then every item needs to be wiped down and placed into the plastic box. Then you shut the box, wipe the outside, and then bring the box into the room. Water bottles need to be wiped down. Once someone’s lips or mouth has touched any food or drink item we need to start a 2 hr timer. After 2 hours, it is tossed. Also, the floor is considered super-dirty (remember, Nadia won’t have an immune system). Anything that touches the floor needs to be kicked out with our feet. Even her teddy bears. It took about 10 minutes before she dropped her pooh bear. We have some extra Jelly’s, and some more Pooh Bear’s are in the mail. Nadia was devastated. On the plus side, we are allowed to bring in her teddies, and need to clean them regularly.

This will be an adjustment.

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Cute pig-tails (Will Nadia loose her hair??)

Last banana for a while (I think fresh fruit will be off the menu until Nadia’s new immune system is up and running)

Ironically, chips will be allowed and considered less risky than fruit (as long as the bag is wiped down with toxic wipes!)

Nadia playing in her crib with her fancy new Daniel Tiger pillow case (with her name on it!)

Nadia had her last dose of chemo today. Good-bye fludarabine! She has started on an immunosuppressive called cyclosporine. The stage is almost set for the battleground that will be her body, where a new immune system from the donor stem cells will try to fight off Nadia’s remaining immune system and take root in her bone marrow. This fight is far from over, it is really just beginning.

Tomorrow we move into the isolation room. It is important to try and keep all possible vectors of infection at bay while the immune systems inside her body fight it out. Keep in mind, this time we want the home team to lose. We want them to lose quickly and cleanly. We want the visiting immune system to take over, make Nadia’s bone marrow their new home, and save Nadia’s life. It will be a hostile take-over and we are hoping to minimize collateral damage. So we welcome isolation. We welcome a germ, virus, dirt-free environment. Bring it on!

We are ready for day 0 on Monday.

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Meet IVy. Nadia is tethered to this apparatus all the time now. The central brain administers up to 4 fluids at a time, including drugs, bloods, platelets, medicine, chemo, hydration fluids, and even cord blood stem cells. All these fluids are administered through her Hickman line, which is a 2 port catheter that goes into her chest, travels subdermally (you can actually see the line under her skin) up to her jugular, in through her jugular and down to her hart. We have seen some monsters like this on the ward, some with 3 brains on 3 poles and lines everywhere. We assume the more lines the more complicated the care. We will see how IVy changes with treatment. IVy will be Nadia’s companion for a long time.

Nadia’s first masterpiece – paint on paper (with a little help from her mom)

Tara and Nadia hanging out on the tree-fort-like crib.

The last two days Nadia has been getting 2 chemo drugs, fludarabine and cyclophosphamide. Cyclophosphamide might be the most potent of the chemo drugs. She got this drugs the past two days with the last dose today. One more day of fludarabine tomorrow and then Sunday will be a day of rest before day 0.

They took bloods overnight and found Nadia’s read blood count to be low, so she got another blood transfusion today (Thank you Donors!).

So far Nadia has been tolerating the chemo well, but we have been warned that the worst is yet to come. We move into isolation on Sunday in preparation for transplant the following day.

Right now it kind of feels like we are camping with a grumpy child. We are away from home and have all the logistics of camping (food, clothing, washing, etc). Our take on isolation is that it will be kind of the same, but stepped up a notch. It will be like camping with a sick, grumpy kid. And we have to turn into neurotic, germophobic, OCD, clean freaks. We will have to assume everything will be easily contaminated, if it touches the floor we have to kick it out of the room because it will be too dirty to touch and full of diseases trying to kill our daughter. We will have to wash for 1 min or longer, and put on a gown to be in the same room as Nadia. There are all sorts of rules about what Nadia is allowed to eat. She will not be able to leave. On top of this we will have to stay well. Any sign of sickness (even C-sores), we won’t be allowed in the room.

Should be fun.

On the plus side, the past 2 mornings have been pretty low-key and we have been near TVs most of the time. I had counted out Canada’s women’s team with 6 mins left and was pleasantly surprised. Daddy’s crush on Wickenheiser is moving towards Poulin. 🙂 What a nail biter! The Can-US men’s hockey was pretty good too – they were well matched teams.

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Daddy-daughter snuggle time

Nadia dipping chips into yogurt

Jelly getting her blood pressure checked (sorry this one is blurry, Nadia won’t stop moving)

The above picture reminds me of something. At first Nadia would freak out whenever a nurse needed to take blood pressure or temperature readings (which is pretty much all the time). She has got much better now. But, at the beginning she would cry and cower, and sometimes even offer up her teddy bears instead! How cruel!! 🙂

Nadia and mommy painting

Nadia shopping in the playroom

Nadia sings along with Rio:

Today we had a pretty uneventful day, which is weird to say, bc Nadia still got a chemo drug, and still had to take 2 oral medications one to protect her liver the other to help with nausea, we are feeling very blessed as a family as there have been no major side effects of the chemo drugs thus far. That may change tomorrow as the drug she starts tomorrow is known to make you more sick and barfy. She took full advantage of being IVy free. She was not as rambunctious as yesterday, but still full of energy. And we finally got a good 2 hour nap into her, first one since checking into the Hyatt, I mean BCCH.  😛

She is even taking oral medicines better than I would have expected.

Nadia was visited by a doctor from infectious diseases yesterday, these guys are always consulted before a BMT. They were happy to report that Nadia was clear of all the virus’s they screen for pre-BMT as well as the donor Cord Blood. For example,  Cytomegalovirus (CMV or herpes virus) amongst other ones.  This is good news, as they can flare up during the isolation faze and wreck havoc on her recovery and set her back. So a few victories that we celebrated today plus the Canadian gold medal win in women’s bobsled! Whoop whoop!

We also had 3 visitors today. Thank-you Corree for coming by this afternoon, and helping to distract Nadia for a bit and refraining yourself from not eating the playdough. Nadia was looking for you after you left.

And thank-you Cam and Suzanne for our Pho to Go. Mmmmm. and the cookies. So for some of you who don’t know Nadia that well, Nadia is a bit boy crazy, and by this I mean, she LOVES men. For example, if she sees a boy in the play room she runs right up to him and really tries to play with him, or kiss him or hug him. Or if she is lucky enough to have a nurse that is a guy, she never cries or fusses when they try to do vitals or hook her up to IVy. Not sure what this translates into, but let’s just say, all the guys are like putty in her hand. Am I right Cam?

And how about that Latvian goalie!!

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Nadia was playing doctor. What she lacks in size & formal training she makes up for in number of stethoscopes! 🙂

Nadia loving play dough

Nadia loving Cam (and Jelly and Pooh Bear)

Nadia runs around the playroom

Today Nadia had about 30 mins of chemo and about 1.5hr platelet transfusion (Thank You Donors!). The rest of the day she was unhooked from Ivy (her IV pole) and spent much of the day in the playroom. She certainly made up for lost time being essentially locked up in her room for 4 days straight. She was literally bouncing off the walls (which is totally OK since she got reloaded on platelets, so no bruising 😉 ). Wow – does she run fast!

It was a struggle to get her back to the room for bedtime …

On the plus side, we got to give her a bath today! We learned how to properly cover up her IV line to keep everything dry. This is a skill we need to learn well because when we move into isolation Nadia will need daily baths. This will be a big change for us all since we normally on bath Nadia once a week whether she needs it or not! 😉

Nadia honing her hockey skills

Ivy free pics!

Nadia has been handling this first round of chemo pretty well. It has been exhausting though. The drug takes about 8 hours to administer, and this whole time we are locked up in our room. And they take vitals every 30 mins. This is a bit of a taste of what we will experience in the isolation rooms I guess.

Nadia has gotten much better at getting her vitals taken, so that really has been helping everyone involved. Unfortunately, she has been skipping her naps. The past 2 nights daddy has been staying at the hospital with Nadia and she pushed her bedtime back from 7 to 9:30 and then 10pm. Tonight she went to bed at 8:30 pm for mommy. Lucky! 😉 (The night is not over yet …)

The Hulk has been coming to visit every so often, but nothing like the first day, so little victory for us.  Nadia is able to get out to the play room before her chemo drugs start at 10 am, so i think that has helped, and she seems to have been ok with staying in the room after.  Another little victory and the sun was shinning yesterday morning so we are feeling very good about life right now!

Now that it is Monday, we had lots of ‘visitors’ in the room. Dietician, docs on rounds, and even some music therapy. Nadia LOVED it! (video below).

So we have finished the Campath (Alemtuzumab), and had the first dose of Fludarabine. The Campath takes 8 hours. The Fluradabine takes only 30 mins. The next two days are Fluradabine only, so we should be able to spend lots of time in the play room. For Vancouver friends, if you are well (we can’t risk getting Nadia or any of her compatriots sick!!), the next two days might be a good time to drop in. We start another drug after this and we don’t know what to expect with that one (besides her hair likely falling out).

The first day Nadia had a allergic skin reaction to the Campath near the end of the injection, and they seemed to be able to fix it with Benedryl. She seemed to tolerate the fludarabine OK today.

We are going to kick this thing’s ass!

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Nadia loved music therapy today

Nadia in her ‘office’

Daddy and Nadia in her office for a meeting.

Nadia’s fort

Mommy resting with Nadia