Nadia's Quest

We were discharged on Friday. Even with Nadia’s counts dipping that day, they felt comfortable with the upward trend and Nadia’s overall health in general. I also have a feeling they needed the room for another little boy or girl sicker than Nadia. We just have to be extra careful.

We will be going to the clinic twice a week to start, with our first appointment tomorrow. After each appointment we will be given the information for the next appointment. Assuming everything continues to go well, they will reduce our appointments to once a week, and then monthly, and then less frequently. I think they will let Nadia go back to Kelowna when we start monthly appointments. At these appointments they will take blood samples and determine if Nadia needs any adjustments to her medications, and will give her any blood or platelet transfusions if needed.

While it is great to be discharged from the hospital, we have been told to expect come back. Since Nadia’s immune system is so brittle, it is very likely, no matter how careful we are, that Nadia will catch something that will cause her to spike a temperature or get an infection. If this happens, we will be readmitted to the hospital for treatment. And that is OK. We want what is best for Nadia.

Going to or from the hospital requires Nadia to wear a mask. After we were given the discharge papers it took almost 15 mins to get the mask on Nadia, and then we rushed out as quickly as we could before she took the mask off.

It was really nice to eat supper as a family on Friday night, and Nadia even took a bite of steak! 🙂

Today the weather was beautiful in Vancouver and we went to a park by the beach. This was the first time Nadia has had sun on her face since we were admitted to hospital in mid Feb. She had lots of fun running around, looking at dogs and bunnies.

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What? I’m Free???

Freedom!

Running away

Nadia running away

Nadia running back

Photoroll right after mommy stopped filming

Playing ball with daddy

Remember the Day 0 Post when we wrote that Nadia’s blood type would change? After successful transplant it will be the same type as the donor. But actually, it will not just be the same type, it will be the same blood! The point of the bone marrow transplant is to replace the stem cells in Nadia’s bone marrow, which were failing, with stem cells from someone else. So after a successful bone marrow transplant, Nadia’s blood will be the donor’s blood. Same blood type, same DNA, and same gender!

In the field of Genetics, a chimera is a single organism that has genetically distinct cells. So after a bone marrow transplant using stem cells from a different donor, the recipient will be a chimera. They will have all their original DNA in all their organs. But the bone marrow stem cells, and the blood these stem cells create, will be that of the donor. This makes the recipient have two distinct, genetically different, types of cells – a chimera.

Once Nadia’s bone marrow started producing sufficient amounts of blood, they are able to take a sample to run some tests. This is called Chimera Testing (or chimerism testing). More complicated descriptions of the process and limitations are available from Seattle Cancer Center.

After we learned Nadia was in bone marrow failure, she had a platelet count of about 7 since October. Since coming to Children’s Hospital they have been routinely giving Nadia platelet transfusions (Thank You Donors!) roughly every 7 days. We have now gone 16 days without a transfusion and Nadia’s platelets are rising! Today they were 81 and the bottom of the Normal range is 200. Shown below is Nadia’s platelets graph including today’s counts.

If you visit the graphs page, you will see that as of today everything is trending up! And considering Nadia’s platelets are 81 and rising, and her bone marrow was only capable of sustaining a level of 7 before transplant, the platelets alone are highly suggestive that the new stem cells are finally starting to do their work – dance dance dancing a revolution, taking over the bone marrow. The chimera test, which they took a blood sample for two nights ago, will let us know for sure. This test will confirm engraftment. It will take a few weeks to hear the results. But if 44 days in isolation have taught us anything, its patience.

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Hey BC Children’s Hospital cafeteria, the 90’s called and they want their sign back! (As illustrated with the animated gif, irony intended, of  the sign apparently abandoned, yet still plugged in, over a doorway)

Nadia’s morning jog in the isolation room

Nadia Laughing

What Nadia does with her bottle when she’s done with it

Well the last few weeks have been an emotional roller coaster.  I have discovered that my body does not react well to stress and anxiety.  I had been so happy when Nadia finally registered on the WBC chart then reminded myself that these numbers would fluctuate and this is normal. But seeing as though I am a future “helicopter parent”, I of course hoped they would move along quickly once they registered, and in the majority of transplant patients they do. If I could have enrolled Nadia into the WBC/ANC extra tutorage course I would have or bought that book on “How to increase your child’s WBC/ANC levels through finger painting”.  But they just sorta hung there, and when they went up and dropped down, I was crushed.  Thor of course always said ‘at least they are not zero’. Thank-god he has a great way of looking at things sometimes!

Coming up to Nadia’s day +35, one of our doctors came into us and told us that this week was ‘crunch week’ (last week), as we were coming up to day 40. As soon the doctors said this I immediately felt weak, sick, hot and anxious.  I actually had to sit down while she talked for fear I was going to faint (never thought I was this type of person, but when your kid is faced with major health issues you realize a lot of things about yourself). The doctor explained that Nadia’s numbers weren’t moving like they expected, and this could indicate that the transplant may have not worked.  I won’t go into details about it, as I don’t I really want to relive that feeling.  Anyhow, I spent the next 3 nights/days, feeling sick to my stomach, no appetite, and no sleep, oh right and sobbing my head off when no one was looking.

The ‘what if’s’ and the overwhelming feeling of helplessness was palpable, they are still there but in the background and a lot quieter, I don’t expect them to go away anytime soon, but at least they have died down (wow I sound a bit crazy, as I read this back to myself).  The thing is when you have a child or someone that is close to you in a situation like Nadia’s, and really there is literally nothing you can do to help them, it is the worst feeling you can feel. Last week was hard, probably the hardest week of my life, I woke up every morning with anxiety over Nadia’s blood work numbers, would they go up or would they go down?

In most cases with BMT’s the first numbers that start to move are the WBC, then the ANC, then hemoglobin and platelets. So with cord blood, it can take longer for these numbers to start moving, and the reason for that is because the stem cells in cord blood are EXTREMELY immature.  They don’t know what the F-bomb they are doing, just hanging out waiting for direction (this is why the are so coveted and so important to donate them if you can). If Nadia had had a match with someone’s bone marrow we probably would have seen these results sooner, because the stem cells directly from someone’s bone marrow already know what they are suppose to do and just start doing it quicker. So when they told us in the beginning it takes longer with cord blood, we didn’t really think they meant this long.  Which is why this time has been stressful.

We are lucky that the BMT team is so great and supportive. They reassured me AGAIN that cords take longer, her numbers are going up, just slowly and to focus on that, it’s a marathon not a race. I also had a good chat with one of Nadia’s other doctors, who was so positive about Nadia’s platelet numbers, that she hadn’t had a platelet transfusion in 10 days, (platelets last 5-10 days in your system when you make them yourself, and less when they are transfused depending on when they were sucked outta someone ) and that number is going up, remember we have never known Nadia to have platelets at 30, they were about 7 since sept. Plus her monocyte numbers were high and in the normal range (monocytes are counted in the WBC count, and are like neutrophils, but work specifically in your bodies tissues) Also a number that was not in the normal range for Nadia since Sept. At this stage I didn’t know her monocytes were in the normal range let alone what the heck they were, so this blew me away and blew away the giant avocado pit that had been sitting in my stomach for the last week (it is now the size of a peach pit if you were wondering, progress I guess).  Thankfully Nadia’s numbers have been slowly moving up, (please see Thor’s graph page for trajectory), which gives us hope that the cord blood has taken, albeit slowly.  They took blood for the Chimerism test this morning, this will tell us definitively if it is the donor’s bone marrow dancing up a storm in Nadia or her old system.  The test takes a few weeks to get back so more waiting.  UGH!

So the last few days have been a bit crazy, they have been switching Nadia to oral meds, Magnesium, and 2 of her anti rejection drugs, still waiting to hear about the anti fungal as she is still getting that through IVy, at night.  Thor and I have been learning to clean lines, squirt things into the line so it doesn’t get a clot in it, and change her dressing. This one will be the most difficult one to do on her as it currently takes 3 of us to do it, 2 to hold her down, one to change the dressing.  It will be interesting.  Basically they want us all trained and ready to go for when Nadia hits that magic number of 0.5 for her ANC of 3 days, they are not gonna do ‘step down’ with us, they want us OUT. Noro virus is back on the ward, so there is no access to the play room anyway.  And we cannot chance it with Nadia’s extremely frail immune system. She is safer at home right now, after all, sick people go to the hospital 😉 .  Keep in mind, if she gets a fever, back to the hospital we go, instantly we are hooked up to high dose antibiotics and isolated until they know what caused it. Even the sniffles could cause a VERY serious complication in Nadia, because her immune system doesn’t have the blueprint to fight off infection.  They will all go to the virus/bacteria party to try and put it out, and perhaps not win and Nadia wouldn’t have enough neutrophils to keep fighting and lead to SERIOUS complications.  Which is why when we get discharged, we will still be in ‘isolation’, no visitors, no playdates, no crowds, no nothing at least until day +100.

So until we reach that ANC of 0.5 please keep sending us your good vibes, prayers and hope that Nadia’s new bone marrow is having that Dance Dance Revolution party!

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Mmmm – Yop!

Mommy!

Some of you have been asking for graphs of Nadia’s counts (mostly the nerdy, sciencey types). I struggled for a while on how best to present them and have put up my first attempt on the Counts Graphs page.

Nadia is still keeping us busy, and we are very happy to see her platelets rising! And we patiently wait for her ANC to rise, since this is the one that will let us leave the hospital. But, if you have ever seen Nadia ‘Tasmanian Devil’ child, you will know she needs platelets. As evidenced with her stunt today! (But Tara won’t let me tell you what happened 😉 )

Here is a taste of the graphs page, showing Nadia’s platelet counts following transfusions. The most recent transfusion counts are shown with a thick blue line. Her next most recent is with a thick black line. The thin black lines are from earlier transfusions. As you can see, she has gone longer than ever without a platelet transfusion, and the little turn upwards always brings a smile to our lips, considering Nadia’s platelets were at about 7 since last August! Today, an even 40, which matches Nadia’s days and nights in isolation – crazy coincidence.

Briefly, we want WBC and ANC to be above, and stay above 0.5. We went over this on Day +3, but I think it is worth reviewing now that we are seeing ANC counts. Today Nadia had WBC = 0.8 and ANC = 0.37.

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 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 0.8. We are cheering for these numbers to continue to increase, because they bring ANC along with them.

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. Today Nadia’s ANC was 0.2. We are cheering for these to increase, as they are an important number that will finally allow us to go home.

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IVy has been reduced in size. Only 1 brain!

Snuggles with mom

Painting with Aunty Neena

Strike a pose ladies!

Nadia painting with Mommy and Aunty Neena

Nadia jumping up and down before blood transfusion.

After Nadia’s blood transfusion Mommy teaches her how to do squats.

So thor and I take shifts staying at the hospital with the Nadster.  one night on, one night off.  Living at the hospital brings me back to Rez days in university.  Where everyone is living in a small room, usually sharing and there is a lot of stuff going on all the time. You learn to live and sleep through a lot of noises.

You find yourself in your Pjs at 430 pm and walking to the cafeteria to get either a late lunch or early supper and there is no judgment not even a double take as you walk by people in your pink flannel bunny pjs, with bed head. You learn when is the best time to shower, eat, hang out in the family lounge for a few minutes to yourself. Then you start to make friends with the other parents and families, sharing stories of your journeys.

It is sad, uplifting and comforting all rolled into one.  People think being in the oncology/hematology ward must be so sad and depressing, something we thought b4 we were in our journey, but it really isn’t, there is a lot of hope and celebration, more hope and celebration than you would feel in your regular life everyday life, something that is hard to express or relate. You learn to celebrate really little things, like normal temperature, no mouth sores, no hair loss, someone ate an entire chocolate pudding then ate cheese and crackers, gaining or holding blood counts, and be hopeful that tomorrow will be the same if not better and if it isn’t then that is something to deal with tomorrow.  You celebrate other families victories, discharges, remission, a no barfing day like they are your own and again you hope that the next day is much of the same.

You learn to live in the now, and that is something we never really understood until just recently. People always make the comment don’t take anything for granted and I always thought I didn’t, until this happened to our little family. Now I can truly say, i don’t, because with every little celebration, of no mouth sores, a good nap, a happy kid, a cranky kid, i feel like it is a little victory that keeps us going until the next day.

We have been lucky and blessed, Nadia has been a bouncing monkey since even before day 0. She is a slave driver, and keeps us her parents and hospital staff on their toes!

Today Nadia received another platelet transfusion. Thank You Donors!

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I started making smoothies for Nadia just after she was diagnosed. We knew she needed a BMT and I wanted a way to fatten her up before transplants as I knew there was a high probability that she would not be eating throughout it and probably have a feeding tube. Thankfully she has been eating like a champ and has maintained her weight so far.

This is not the norm for BMT patients. Most patients heading into a BMT have had months if not years of chemo and their mucus membranes are raw and sore and riddled with sores, so eating and swallowing are painful.

Everyday we are thankful Nadia has had none of these issues.
Nadia’s smoothies usually consist of frozen fruit, juice, and the fattest plain greek yogurt I can find. Well when you are going thru a BMT there are HUGE food restrictions and preparations are HUGE, to the point of exhausting, and we haven’t even left the hospital yet. Nadia’s poor fruit smoothie has morphed into something that isn’t what it use to be.

I have to microwave the frozen fruits so that it is heated thru, to ensure I kill all if any bacteria or fungus. I then have to place the freshly warmed fruit back into the freezer to cool down. And before I do all of this, I have to wash down the counter top and anything I am using with special kill-all wipes, I have to wear gloves when I use these suckers or eventually my skin will melt away (ok that MAY be an exaggeration, but i do have to wear gloves) after this i place everything in the blender, making sure I have measured out everything so that it is correctly recorded onto her nutrition sheet so the dietician can calculate her calories to make sure she is getting enough. We write down every morsel of food on these things to ensure that it is all counted so that we can keep the NG tube away. ‘A morsel a day keeps the NG away’ we always say.  HA!

anyhow, after preparing all of this, something that used to take, 5 min, now has expanded to 20 min, and keep in mind, Nadia has to consume things within 2 hrs of it being prepared/opened or out it goes.

So I present Nadia with these smoothies like a crowning motherhood achievement, usually super excited that this is the most meal preparation I have done for her since checking into Hotel BCCH, and she rewards me with a few sips out of the giant mixture I made her, and in true 2 yr old fashion puts it down and doesn’t go back to it!  BHAAAAA! I then spend the next 2 hr time limit trying to force feed it to her. But she drank 3 sips of it.

Fortunately today she drank it all!

Take that NG tube!  Hy-ya!

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Photobooth style:

This is how life looks for mommy and daddy while Nadia is in isolation.

We are on a 2 day repeating schedule. Let’s start by daddy waking up at the hospital. We wake up at about 8am every morning. There is no sleeping in. One of Nadia’s meds starts at 6am and finishes at 8am and IVy starts beeping to let us know she is done. We have to page a nurse into the room to stop the beeping. The commotion wakes up Nadia and there is no way she will go back to sleep when it is bright outside. She usually sleeps through the night and goes back down after disturbances, but not at 8am.

Then it is breakfast for Nadia and the nurse does vitals. Usually some time before 9 am mommy shows up and takes over, letting daddy washup, change, and have breakfast.

Then it is a bit of play time. Sometimes Gloria, the cleaner, comes in to do her bit. Nadia LOVES her. Gloria is awesome.

There is a gap between medicines between 11 am and 1 pm right now (this changes as Nadia’s meds change). So at about 11 am the nurse disconnects Nadia from IVy and then it is ducky time in the bath.

The daily bath is pretty important not only to keep the immune compromised child clean, but allows us to get a good look at all her skin to see if any transplant-related rashes are starting. (Happily, nothing to report here!)

Shortly after bathtime is lunch for Nadia. Mom and dad take turns going for their lunches.

Between 1:30 and 2:30 Nadia goes down for a nap if we are lucky. Sometimes mommy and/or daddy has a nap too in the room (this is an uncomfortable thing to do on our ‘love seat’ using the chair as a footstool). Rarely we watch a show together in the room, sharing headphones like teenagers on the bus. Sometimes Thor sneaks away and does some work.

Between 3 and 4 pm Nadia wakes up in here. It is play time, snack time.

The fresh linen cart comes at about 4pm and we change bedding daily to keep Nadia’s room as clean as we can. We have been told to take everything from the middle, not the top or bottom. Strangely, daddy has always had this habit in stores. The assumption being that the front items are handled by everybody and are obviously gross and the back items are at the back because someone hid them there after damaging them. Or sneezing on them. Or <don’t judge me you think it too!!>. 🙂

5pm Supper arrives. We feed Nadia and mommy and daddy take turns eating supper.

Sometime after 7pm daddy leaves for the apartment. On the way there he picks up groceries and run errands.

As soon as daddy arrives at the apartment he starts laundry. There is typically 3 loads to do. Nadia has many wardrobe changes and her bed changes every day (we bring in some of our own linens too). If food gets on her clothes (and it does all the time) we change her. We consider this ‘food left out’ so it has 2 hr time limit. And we wash poohs and jellys that hit the floor.

And of course there are the typical ‘home’ duties. Cleaning etc. Sometimes prepare the next day’s supper. Daddy will do some work. Pay bills. Update blog. Etc.

And then decompress with 20-40 mins of drivel on TV.

Bedtime is ‘laundry limited’, meaning we can’t go to bed until we put the last load in the drier. We are lucky to get into bed before 11:30pm.

6:30 am wake up, wash up, eat up.

Pack bag, including groceries and clothes for Nadia and overnight stuff. Pack supper. Take a frozen supper out of the fridge for the next day. Get to the hospital just after 9 am to relieve mommy.

Repeat the day. Mommy leaves for the condo and daddy plays with Nadia (meaning he crawls in the crib and she just uses him as a balancing beam) until about 8:30 pm at which point he puts her down to sleep. She usually amuses herself until about 9:30. After she is asleep daddy changes into his pajamas, brushes his teeth, maybe blogs a bit, and goes to bed as early as he can.

The nights at the hospital are unpredictable. Some nurses are AWESOME and make great efforts to be in the room before IVy’s alarms start going off. These nights are very restful. Other nurses, and sometimes even the best nurses get caught up in other patient’s rooms, one of the meds ends and the IVy starts demanding attention. So we have to wake up and page the nurse and silence IVy. It takes at least 5 mins for a nurse to show up (remember they have to scrub for a min and put on a gown before entering the room) and the silencer only holds for 1 min. The bad nights are when we have to do this for every med, which is about 5 times a night. The worst nights are when air gets into the lines and IVy stops the infusion and starts beeping. I think the worst so far was over an 8 hour ‘sleep’ I had 8 interruptions.

8 am Nadia wakes up.

Repeat two day schedule.

Mommy’s schedule is similar to this. All times are approximate. And there is changes of plans and flexibility. But this is the bi-daily grind.

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IVy at night, lighting up the room. Biomedical Engineers reading this blog – you can do better! Lights that dim at night? Radio alarms to nurses instead of disturbing patients and parents? It is clear the designers never slept in a room with an IVy.

Growing like a weed

The cuteness

Hmm. ‘very tweet’. How appropriate for twitter. 😉

And on the ducky front – our friends in Victoria sent us 4 more duckys! Thanks Barretts!!

All her ducks in a row

< my preciousessess >

Nadia overwhelmed with duckys

Those who follow Nadia’s Quest on twitter and the facebook know that we crossed a milestone yesterday. They measured some white blood cells! Instead of measuring < 0.1 they measured 0.1 two days in a row. This is an indication that Nadia’s bone marrow is starting to produce blood cells, and is the first step towards building her new immune system. Once the white blood count (WBC) reaches 0.5 they will be able to start counting neutrophils (ANC). When ANC is at 0.5 two days in a row, Nadia will be able to leave isolation and enters ‘stepdown’ isolation. We will describe what this means in a later post. For a refresher on what these abbreviations mean, see Day +3 post. For those interested, we have started a new Counts Pool. Can you guess the first day Nadia will be allowed to leave the room?

Even with this forward progress, Nadia will still need blood and platelet transfusions until her bone marrow can produce enough of these cells to keep the levels high. So, having celebrated her counts yesterday, she still needed a red blood cell transfusion to increase her Hgb count. These red cells bring oxygen to your body and when red cell counts get low the patient usually gets tired. Nadia has lived her life so far with a low red cell count, so when she gets a transfusion she is super-charged! Check out the videos below. Put Hulk Hogan in the middle of that ring and Nadia would definitely take him out! <stomp stomp stomp stomp>

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In our ‘normal’, pre BMT life we would do laundry roughly once a week, and the volume varies between 3 and 5 loads typically. This has certainly changed with Nadia in isolation.

Remember the 2 hour rule about food? If Nadia’s lips touch something (food or drink) a 2 hr time starts for that item. After 2 hours it has to leave the room. This precaution is to prevent bacteria growing on food items, which could become airborne, inhaled by Nadia, and eventually lead to an infection for a little girl without an immune system. Well, this rule holds true for clothing too. If she sucks on the corner of her blanket (something she ~never~ did before coming into isolation), or spills food on her clothes, she gets a change. This means we are going through about 3 blankets, 1 or 2 Jellys or Poohs, and several wardrobe changes a day.

Also, mommy and daddy can only wear something once before it has to be washed.

As a result, each night we do 2 to 3 loads of laundry (depending on volumes and colours). Each load needs to be dried on high heat. Once dry, and cooled off to prevent any condensation, the clean clothes are put into a clean plastic bag. This clean plastic bag is then placed inside another clean plastic bag for good measure. The double-bagging procedure is necessary because we have very little storage space in our anteroom, and it is not uncommon to snag and tear a bag. A hole in the bag means the items within are contaminated (remember – germaphobe mentality here!). So far we have had a few tears in the outer bag, but not though both bags.

While doing laundry is not that big of a job, it is time consuming, often limiting how early we can go to bed when one of us spends the night at the condo. Sometimes, in the middle of the night, daddy will wake up and put the dryer on again for good measure. Scooby takes a long time to dry …

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