Nadia's Quest

Tara and Nadia did not get much sleep the night of admission. Nadia was given her red blood cell transfusion (Thank you Donors!!!) and they checked her vitals every hour.

Day -10 was hard. With lack of sleep, 10 hrs of chemo, official lock-up in the room, and a dose of steroids, little N was not herself. She wanted to leave. If you know N, you know she does not speak much, and we have been working hard to get her to say more. But she is a good communicator and we always reward her for getting her point across. Today we couldn’t. We knew what she wanted but could not let her have her way. How do you explain bone marrow transplant to a 2.5 year old? How do you tell them that you have to poison them with chemo drugs, bring them to the point of death, and then bring them back in order for them to live a longer life? Well, you can’t. At least, we can’t.

It was heartbreaking. Nadia wanted to leave. She even put Tara’s hand on her jacket and pointed to the door. :_(. Daddy was a mess.

Combine this frustration with sleep deprivation, chemo drugs, and steroids and Nadia was transformed into a little Hulk. She raged. And raged. And raged. She left a Nadia-shaped hole in the door as she broke way to freedom, grabbed a nurse and bashed him around with each step using only one hand as she stormed off the grounds. (obviously not true, but definitely going through her mind and within the realm of possibility given the laws of physics she understands from cartoons).

ROID RAGE

At the end of the day she had a bit of a reaction to these chemo drugs, and is being watched closely.

Last night they only checked her vitals twice. Mommy and Nadia had a much needed rest, and Bruce Banner greeted us this morning and so far today. We are now about 1/2 way through the chemo injection. We will see if the Hulk shows up.

Morning bubbles with Daddy:

Playdough:

Nadia has been fighting for her life for a while, but today things stepped up a level.

Nadia was admitted to Children’s hospital today, and had her first test dose of chemo. Full doses start tomorrow.

Nadia made a grand entrance with her squeaky shoes. As she ran down the hallway towards the big play room we could hear nurses around the corner say ‘Nadia’s back’. 😉

They took bloods and everything was low again. She received platelets this afternoon and will get some bloods tonight. Thank you blood donors!

Here are some happy pics. 🙂

Mommy/daughter Yoga:

Nadia LOVING the Olympics:

Daddy/daughter cuddles during platelet transfusion (daddy is wearing a mask because he has a sore throat and is scared of passing this on to Nadia or any other immune compromised kid in the Oncology ward):

Nadia LOVES it when mommy makes her a cape, just like Kipper’s cape. But you tell me if this is a cape or a toga?

We had a nice, low-key weekend. Nadia has been full of beans as usual, terrible 2’s really put a parents patience to the ultimate test! We enjoyed the weekend of no appointments and even an entire PJ day. 🙂 We got cable hooked up and can now kind of keep up with the Olympics and Daniel Tiger’s neighborhood. On Sunday night we were invited for supper at Cam and Suzanne’s! Thank-you Cam and Suzanne for the amazing supper, it will be our last supper out with friends and in someone else’s house for a long while, so thank-you for going above and beyond. Our only regret is not sneaking away some brownies. 🙂

We wanted to thank everyone who has sent cards, care packages and prezzies, Nadia LOVES running downstairs everyday to check the mail.

We also wanted to do a shout out to Peakaboo Beans for the clothing they sent Nadia. Nadia is LOVING her new jacket and her mommy wishes it came in adult size!

We have an appointment today at Hematology to get Nadia’s line flushed. We were supposed to be given a tutorial to learn how to change the the dressing, clean the area and flush her line but because our start date has been pushed back they just asked us to come in and save the lesson for when we are admitted on Thursday.

The weather in Vancouver has changed from frigid for Vancouver to rainy and warmer.

Nadia is getting REALLY good at saying ‘Daddy’ – it is super cute, and melts our hearts every time she says it, even from the crib early in the morning and her dance moves have really improved!

Thanks again to Corree and Daren for picking up a few odds and ends from our place.

Nadia kept tucking Cam in and giving him her Jelly. I think she is smitten. 😉

What do you mean Day -17? Wasn’t yesterday -15??? Can’t you count?

There was a bit of a mixup with one of the chemo drugs and they needed to order more. So our Day 0 has moved from Feb 21 to Feb 24. The EXCELLENT news is that the cord blood is here!

Today was a tiring and trying day. We had an early morning at the hemo clinic for Nadia’s kidney function test. This test involves plugging Nadia’s central line into an IV pole and pumping her full of IV fluids. If any of you have ever had an IV pole, you will agree that it is a bain in the butt, well imagine being 2.5 years old. This involves thinking that your life is still normal while your parents run after you making sure you don’t yank the central line out while darting across the oncology/hemo play room full of toys, other kids and their IV poles. Let’s just say Nadia had a great time running to and frow, while her parents had mild heart attacks running after her to make sure she didn’t yank out the entire line.

We then got to go to Nuclear Medicine where they injected Nadia with Tc99m (queue Thor’s excitement as he watches particles dance all over Nadia’s body on the computer screen). To do the imaging they had to strap her in from the armpit down while they put a scanner over her body to watch the Radiation do it’s magic. We were told that most kids fall asleep during this 1/2 hour procedure. We thought ‘great then she will get at least some sort of nap during this VERY long day’ yup nope not our little viking she fought tooth and nail and made sure all children walking into the area knew that is the worst place on Earth and to run for their LIVES. After this was done we had to then go and get a chest xray to get a baseline reading of her lungs pre-BMT. We then went for lunch where Nadia ate like a pig. Chips, pizza and some of daddies hamburger. After lunch we were then back at hemo to get bloods drawn at 1:35 and then at 2:35. These are taken to check the outcome of the renal function after being injected with Radiation. During this time we managed to meet with our Hemo team, to sign papers and discuss the BMT a bit more. It was a bit of a rushed meeting as they were fitting us inbetween appointments of our and theirs. So basically they have consulted with Dr. Argwal in Boston, who is a lead researcher on reduced intesity chemo for BMT paitients with Dyskeratosis Congenita (DC). B/c of Nadia’s disease her DNA is super fragile, like most DC paitients but Nadia’s seems to be even more. So everyone is happy that total body irradiation has been taken off the books for Nadia’s treatment plan, and I think we are more comfortable hearing this as well. It was at this time that we learned about the change of BMT day 0.

So now Nadia’s treatment will start this coming Thursday. I know some people would be pissed about this and it is kinda crappy I admit, but honestly, we could use a few days of nothing to regroup, get Nadia well rested and ourselves before we check into the Hyatt, I mean hospital. 😛 I think they were expecting us to perhaps freak out, but honestly, why? If this had been figured out after Nadia had started then yes, perhaps a freak attack would be warranted, but this is not the case so I don’t think there is a point. The best news is that the cord blood is in the house! whoop whoop!  This is something we worried about the most – without this bag of goodness we would be hooped.  So thank-you courier people!

After our meeting with Hemo, we had one more appointment with Audiology. This was probably the worse part of the day. Nadia had had enough, she was EXTREMELY tired and cranky. We have to get her hearing tested b4 chemo, as some of the chemo drugs MAY affect her hearing. To make a long story short, we will be going in on Wednesday and they are going to do a sedation hearing test. So hopefully she passes this with flying colours.

We wanted to do a shout out to another DC patient in the USA who just got his BMT on Monday, he will be doing the same regime as Nadia, and being followed by Dr. Argwal. After a delay with his BMT donor getting the flu, he was transfused on Monday and seems to be doing well. Please add Ryan to your thoughts, love, prayers and waggy tails!

On the lighter side – here is Nadia in her squeeky shoes. A big hit with all the parents and doctors. Thor told one of the docs (a former Engineer) as Nadia was running down the hallway out of sight that “I really like these echo locating shoes because you can tell where she is, and how fast she is moving”.

Oh – and the geneticist said that this definitely comes from Tara’s side of the family.

Nadia making ice cream soup in the playroom.

Yesterday we had a bit of a lull in the morning and went for a brisk walk. It is cold (for Vancouver), but sunny! We then went back to Children’s to see Dermatology.

Today was jam-packed. We only saw 3 specialists, and the schedule on paper looked like we had lots of time. We had endocrinology, genetics, and cardiology. Each one was scheduled for 1.5 hr and there was an hour between appointments, but somehow they all ran together. Tara and Thor missed lunch and were grumpy, but Nadia had one of her best days at the hospital! The cardiac ultrasound went ~very~ well. She hardly fussed. 🙂

Nadia’s CVC line does not seem to bother her any more. In order to prevent her from pulling it out, we have been told to put tape on the end of the lines and pin them to the inside of her shirt. At first it was a bit wild trying to pin it to her shirt with Nadia waving her arms around. She is much calmer now when we do it. She is really good.

The specialists did not have to much to say at this point. It is more of a ‘baseline’ assessment for both DC and the bone marrow transplant. Tomorrow we see the BMT team and will get some updates on the treatment plan.

Below is a fun video of Nadia and Tara playing See Saw. Anyone recognize the background music?

Thank you everyone who came to the swab event yesterday. You really made a difference. Hopefully one of the people registered will be lucky, and be picked to be a hero for Sophie or Nadia or some other lucky person.

Especially thank you to Elham and friends from Zavieh. And thank you sooo much to Anika and Warren for being able to make last minute (literally) adjustments in order to make this event happen. The event was a huge success with over 120 people enrolled, with an enrollment rate of just over 1 person every 2 minutes. Busy, busy!

You can see a bit of the event at the 9 min mark from Global News.

Today we had Nadia’s central venous catheter (Hickman line) put in. This is the line that will be used going forward to draw blood, give medications, chemo, blood products, and stem cells. It is a very important line, requiring surgery, that goes right into her jugular and right to her heart. This line will save numerous pokes (which is a good thing). It will be Thor and Tara’s job to keep this line clean!

Of course, before they could do the surgery, Nadia needed a platelet and blood transfusion. With her platelets so low, Nadia has always been at risk of not clotting – so these blood products were essential. Thank you to all the anonymous blood and platelet donors who make this possible. THANK YOU THANK YOU THANK YOU. We are happy to report no reactions to the blood products. 🙂

Below is a picture of Nadia’s blood transfusion bag, which was set up after midnight and after her platelets were finished being transfused.

Nadia’s surgery happened today without incident. Well, maybe one incident. Once the Hickman Line was in place, Nadia no longer needed the IV line in her arm (that was boarded up). The nurse asked if Nadia wanted to help take the line out, and Nadia took her too seriously. As soon as the nurse cut the tape holding the board, before we could react, Nadia just pulled the whole thing off. There was blood everywhere! And we are happy to report that her new platelets are working splendidly. 🙂

If all goes well we will be discharged tomorrow.  We start seeing specialists the following day.

Really – another good-new day. Keep the good news coming!

(Choo Choo! before bed last night)

(Tara’s excellent Shepherds Pie, prepared months ago, stockpiled and ready for just this occasion)

After a relaxing morning we headed out to Tsawwassen centennial beach to go for a walk with some friends. There was some confusion and we both ended up at different beaches in different cities. Oops. Sorry!

We met for some wonderful fish and chips in Steveston. Delicious!

Tomorrow we check in to the hospital. The following day Nadia will have her surgery to install her central venous catheter (Hickman line). This line will allow the doctors to draw blood, give medication, administer chemo drugs, and I think be used for the stem cell transplant. This is a very important catheter. This type of line is used when long-term intravenous access is required. Nadia will have this for months, and our job will be to keep it clean and do our best to prevent infection.  This line will go straight into her jugular!

But, since Nadia’s platelets are so low, she will require a platelet transfusion before the surgery. We are very fortunate and very lucky that we have been able to avoid any transfusions so far. They want to expose Nadia to as few blood products as possible before the transplant (fewer blood products before transplant means better outcomes). Transfusions are required going forward and are unavoidable.

Really, we can count this as our first Win. With Nadia’s platelets being dangerously low (and decreasing) since August, Tara can take most of the credit for keeping Nadia safe these past months, spending almost every waking hour making sure Nadia did not experience a trauma large enough to put her over the edge. We have managed to avoid blood products so far. This is a Win. Keep them coming. 🙂

Don’t forget about the Swab Event being held in Nadia’s and Sophia’s names tomorrow! These two perfect little girls are having trouble finding matches. Could it be you? Could you be her Hero? This pdf poster has the details. Show up between 1 and 5 at t Zavieh (Burrard & Nelson).

You can learn more about Nadia’s buddy Sophia at her Facebook page: Sophia’s Journey.

Thank you Elham and Yas for organizing this event, sharing our story and helping raise awareness of OneMatch.ca.

Below are some pictures from today.

Tara calls this one “Daddy the multitasking tickler”.

Wee!

Wee!

What a perfect day to drive from Kelowna to Vancouver. After 2 days of steady snow in Kelowna, and storms up in the mountain passes, and an alternate route just recently reopened from rock-slides, we had nothing but blue skies!

Condo living in Vancouver is a bit of a change for us. We are really tight for space. We have made the necessary adjustments. 😉

Nadia still has her own bedroom:

And she really seems to be enjoying her condo-sized playpen 😉

Last week we had a conference call with Nadia’s Hemo team. The initial look at the blood work of the cousin’s does not look like they will be a better match than the cord blood we have on hold for Nadia. We knew that this was a long shot, but I would be lying if I said that I was not devastated.

They are looking at us to be in Vancouver for Feb 3 to start the baseline testing then Feb 11 for the start of the 10 day chemo regime. Then on Feb 21 they will transfuse her with the cord blood. They call this day 0. That makes today day -28.

The cord blood is from 2011. The hemo team are happy with as it is fairly recent and retrieval techniques have changed a lot in the last few years. We will NOT know who this wonderful momma and baby is that was so generous and forward thinking to donate to a public cord registry, but we are so VERY thankful that they did.

The cord blood match was 5/6 match, when you are looking at a stem cell cord blood match, they look at 6 indicators. So the mismatch for Nadia is on the A, which is apparently if you have a partial match cord blood match this is the one you want it to mismatch on. What we were told is with cord blood it is a longer engraftment period. With bone marrow stem cells we should start seeing her blood levels going up by day +10 to day +15. With cord blood they start to see them go up around day +20.

We will definitely be in the hospital for the full 30 days after the transplant probably more if she gets an infection etc. We will remain in Vancouver until probably 100 days post transplant if all goes according to plan.

There was talk about Graft Versus Host Disease and their concerns about it. You can look it up and read all about it, but be warned it can be a bit of a scary read. And concerns about engraftment as cord blood takes longer.

They are also happy with the time of year this is taking place, air quality counts, construction at the hospital etc.

So there you have it, we will have another meeting with them during the week preceding her chemo regime to go over more stuff in detail. This meeting was to lay out the game plan for Nadia.

On a brighter note we as a family had a great weekend snowshoeing and hanging out in Big White. I think it took every ounce of strength for Thor not to put Nadia on some skis and take her on the runs.

Thanks again for all of your support, emails, private messages etc. We feel very lucky and blessed to have you in our live and cheering for Nadia as she continues on her quest. xoxo

(don’t let the picture above scare you. We did not let Nadia slide down those awesome looking sledding hills 🙂 )

(This yellow snow is not so bad)

(Tara does tricks)

(Thor doing all the work)

(Nadia sledging!)

Vancouver’s Coop Radio had us on to discus Nadia’s Swab event on their It Takes a Village program.

Mary-Lynn from OneMatch.ca first describes Canadian Blood Service’s One Match program and blood donation. Thor follows up with Nadia’s Quest. The purpose was to highlight community, good fortune, and the kindness of strangers. They are helping promote the bone marrow donor registry (Swab Drive) on Feb 2, from 1-5 pm at the Zavieh (Burrard & Nelson Street). You can download the audio from their site.

The bone marrow registry drive is being held in Nadia’s and Sophia’s names. Sophia is another beautiful little girl of mixed ethnicity who desperately needs a bone marrow transplant, and like Nadia, is having trouble finding a match. Could it be you? Could you be her Hero? This pdf poster has the details.

You can learn more about Nadia’s buddy Sophia at her Facebook page: Sophia’s Journey.

Thank you Elham and Yas for organizing this event, and Thank you Coop Radio for sharing our story and helping raise awareness of OneMatch.ca.

Hey – we even got them to play Corb Lund’s Cows Around ! 🙂