It is starting to look like Nadia is going longer between platelet (PLT) transfusions. Also, yesterday morning Nadia’s red blood cells (Hgb) went up (but went down a bit again today). These are all good signs that maybe her marrow is doing a bit of work. We are still waiting for the white cells (WBC) go up. For a refresher on what these things mean, see Day +3 post.
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Our Day +17 post was about how bathtime works in a BMT isolation room, and we lamented our missing ducky. Well, a friend of a friend (the kindness of strangers!!) gave us one of their duckies! Nadia was soooo happy. Thank you Lucy (and Leigh and Colin) 🙂 . Nadia is a very lucky-ducky girl!
Nadia receiving her ducky gift.
Nadia loves her new ducky!
A good pic showing how we secure Nadia’s ‘noodles’ for bathtime:
Without an immune system, a food-borne illness is much easier to get, and much more dangerous for Nadia. So we have to be very careful regarding food and drink. This not only includes what she consumes and how, but also anything that comes in contact with anybody’s mouth. In this case, the germaphobes are right, and we have to try to think like them.
Anything that comes in contact with someone’s mouth has a 2 hr timer on it. So if Nadia drinks some water from a cup, the cup has 2 hrs before it has to leave the room, or at least go in the trash. This rule holds for anyone else in the room as well. In order to keep track of this we either write the time directly on the object using a permanent pen, or we write it on the white board in the room.
The kitchen prepares special meals for BMT patients. The food tray comes plastic wrapped, and individual items within are also wrapped. But, Nadia, being 2, does not really eat anything off the tray. So we bring in tetra packs of puree, individually wrapped cheeses, and yogurts (and on occasion chips when we want to be parents of the year). Each one of these items is wiped down before bringing into the room, and once opened, a 2hr timer starts.
Tara is able to make Nadia her favourite fruit smoothies though. We’ll save this complicated process for another post.
Only Nadia is allowed to eat in the isolation room, so mommy and daddy take turns eating in the parent’s lounge, where we swap stories with other parents, provide each other encouragement and hope, and sometimes a shoulder to cry on.
Oh, and we were wrong about the bananas! I don’t think all BMT centres are the same on this. A BMT manual from 2013 we purchased said no raw fruit, but our team here feels that fruit with skin on it is OK, as long as the skin is wiped down before it is brought into the room. Then the fruit has to be peeled before eating. So when a banana comes from the kitchen, it is wrapped in plastic, put on the tray, and then the tray is wrapped. Double protection. 😉
And sometimes we just let her eat chips in the crib.
And we write it all down. The nutritionist has a keen interest in keeping Nadia fed and will recommend a feeding tube if needed. At any time Nadia could end up developing sores in her mouth from the BMT process, at which point eating will become uncomfortable. It is important to get the feeding tube in before everything gets really sore and swollen. There is an option beyond feeding tube but I won’t go there.
Also, the nurses are very interested in the amount of fluids Nadia is taking in. They weigh every diaper, and weigh Nadia daily (down from twice daily) to make sure she is not retaining or loosing too much fluids. Either case could mean trouble.
Happily, Nadia is eating, drinking, and peeing/pooping like a champ. 😉
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Nadia eating pudding using a large soup spoon. The kitchen keeps sending up the largest spoons they have for a toddler. Sigh. One would think a Children’s hospital would have an over-abundance of teaspoons for little mouths.
A 6 year old on the ward made Nadia a sign for her door. This little girl is so sweet! And so mature. The nurses say that it seems common for young patients on the ward, facing the daily grind of fighting cancer – getting chemo, blood products, feeding tubes, doctors and nurses probing at all hours, etc – to act older than they are. These kids are so brave, so tough, so beautiful; we can learn a lot about life by spending time with them.
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Every day Nadia has to have a bath. We try our best to coordinate everything so that Nadia can have a bath without IVy coming along. Depending on how her drugs, and sometimes blood products (Thank You Donors!), are scheduled, the nurses do the best they can to accommodate us. Right now we have a gap between drugs from 11:00 – 13:00. During this time a nurse will disconnect IVy, sanitize everything, and give Nadia some freedom. Nadia’s CVC line is still tender and kept under a dressing that is changed weekly. We have to keep this dressing dry or the adhesive will come off, or water can seep under it. If water sits under the dressing for a long period of time it can do damage to the skin. When someone does not have an immune system it is important to prevent skin irritations, to help prevent infection which can be very dangerous to bone marrow transplant patients.
In the video at the end of this post is Nadia having a bath. Her dressing is covered up with Glad Press’n Seal (seriously), which is taped down with orange/pink (mommy and daddy are arguing over the actual colour) tape. Nadia can’t have too much water in the bath, because even with this protection we have to keep the tape dry. It does not take much moisture to loosen the tape off. Also, since Nadia’s torso is so small compared to the CVC line (and dressing, and Glad Press’n Seal, and pink (orange) tape, with each layer covering more surface area), small movements have big impact on loosening the tape. So it is a run against the clock. We do Nadia’s hair first and then soap and wash as much of her body as we can before the tape starts coming off. Occasionally we get her rinsed off and Nadia can spend some time playing before we have to take her out.
Nadia is not allowed any toys in the tub that can hide water inside them. The fear is that the water inside the toy can sit for 24 hours and some air-borne bacteria will find its way in and start growing. Again, without an immune system some bacterias are very dangerous. We are still searching for a rubber ducky without a hole in it!
So Nadia’s baths are not as fun as they used to be. It is a flurry of activity for mommy and daddy, and often Nadia does get to have a little fun. The video below shows her playing in the tub. You can see about half of the covering on her chest. Also, notice the vampire-like marks on her neck. These are from when the doctor put in her CVC line. It is at this point in her neck where the line goes from just being under her skin, to entering her jugular vein on its way to her heart.
Or Vampires. The mark could be from vampires.
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Anyone want to weigh in on the colour of that tape? 😉
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Nadia crashing hard for an afternoon nap, smothering Scoopy Doo and Jelly.
Mommy taking the opportunity to nap too, showing off her awesome dressing -ahem- isolation gown.
Some great news! Remember the bone marrow registry drive for Nadia and Sophia? (and our continual reminders, nudges, and requests for you to sign up if you can and to spread the word about OneMatch.ca) It appears Sophia might have a match! Since Sophia’s doctors regularly check the registries, the potential match is most likely a new recruit. So if your bone marrow registry contacts you (or recently contacted you) to have further testing done, there is a good chance you are being asked to help Sophia.
Isn’t that wonderful? It is really rare, and special, to see almost immediate results from bone marrow registry drives.
So thank you again for registering with your bone marrow registry. Thank you for coming to our bone marrow registry drive. Thank you Elham and friends from Zavieh and to Anika and Warren for making the Vancouver drive a success. You should be proud of this accomplishment.
And if you have not signed up with your bone marrow registry, please do. Encourage those you know. There are many more Nadias and Sophias who need your help.
The kindness of strangers.
It is in you to give.
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The floor of the isolation room is considered dirty. So if Pooh touches the floor that makes Pooh dirty too. That means Nadia can’t play with her dirty Pooh. She needs a clean one because she has no immune system.
To make it through the day with minimal meltdowns, we have multiples. Multiple trains, multiple Jellys. Before coming to the hospital, Jelly was by far her favorite stuffy. She now has an equal liking to Pooh.
Nadia’s uncle gave her Pooh in the fall. He visited us at BC Children’s and picked up Pooh in the gift shop. Nadia’s cousin Kip loves his Pooh. When we came back to the hospital this time Nadia started taking more interest in her Pooh. After she dropped him on the floor and we had to kick dirty Pooh out the door we went back to the gift shop to get some backup Poohs.
They were sold out!
We checked a few places in town and could not find any Poohs. We had to order backups online.
We would last about 2 days before Nadia would drop Pooh on the floor. Yesterday she had her Pooh back for 10 mins before dropping him. Sigh.
But yesterday her Poohs arrived in the mail. And now we have spares! Check out the video below of Nadia being reunited with her Pooh.
Geoff – look at what you have created!
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A line of Pooh
One Pooh is going East and the other Pooh is going West, so what?
Remember viridans streptococci from Day +7? The good news is that the blood cultures the following days came up clean. Might have been a contaminant (meaning the source of bacteria was not Nadia, but somehow got on the slide after drawing blood). So they have stopped one of her antibiotics. Nadia is doing well!
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In a previous post we described what all the numbers mean that we post daily on the twitter feed. Nadia’s counts have bottomed out, and we patiently wait for changes. It is a dangerous time for Nadia because she has no immune system. We are blessed that she is still so full of energy. (Well, blessed and exhausted 😉 )
So here are some answers to questions you might be asking.
1) How long will Nadia be trapped in the isolation room?
We need her neutrophil count (ANC) to be larger than 0.5 for two consecutive days. But before they can measure ANC her white blood count (WBC) needs to be larger than 0.5. Today (and the last few days) Nadia had WBC < 0.1 and ANC = 0. This is what I mean by ‘bottomed out’. This is as low as they can measure.
But, once her ANC is 0.5 for two days together, and Nadia does not have any infections, she can go into ‘stepdown isolation’. This means she can come out of the isolation room and walk around the ward wearing a mask. She will be able to go to the playroom again! And she will be treated like royalty. When she is in the playroom during stepdown, no-one else will be allowed in there!
It is even possible during stepdown isolation that we will be moved out of the isolation room into another room on the ward, but it is too soon to know if this will apply to us.
It could take more than 30 days post transplant to get to this point. Today is day +11. So we are edging closer.
2) When can Nadia go home?
Nadia can will be discharged from the hospital when she has an ANC count of 0.5 for two days in a row after starting stepdown isolation. This means the fastest Nadia could feel daylight on her face again could be 4 days of ANC = 0.5. But this totally depends on her overall health. And it is possible for the ANC value to dip again after she is in stepdown isolation phase.
The other factors for overall health include: no feeding tube and all nutrition Nadia is getting is by eating on her own, no fevers or signs of infection, a limited need for blood transfusions, able to take medications by mouth, and mom and dad are taught how to changer Nadia’s CVC dressing and clean the lines.
When we start to see signs of engraftment, we will learn more.
Keep cheering for Nadia’s counts!
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Sorted the toddler pulling out the straw problem: (the nurse laughed at my disproportionate joy in figuring out how to outsmart a 2 yr old)
Tonight’s spread – doritos and smarties (thanks mommy!)
Occasionally, I can’t help but hear my dad over my shoulder yelling at me <fondly 😉 >
Getting into the isolation room is a bit of a process. I often send Tara a txt letting her know I’m on my way: “isolation room entrance procedure commencing”. The first, important step, is to go pee. Even if you don’t have to. Then you enter the ante-room and cavi-wipe any objects you plan on bringing into the room. You put these on a freshly cavi-wiped surface in the ante-ante-room (both ‘ante’ intentional). Then you wash your hands for 1 minute – timed. After scrubbing all the skin off your hands and arms you put on an special gown and go into the isolation room. Depending on how many objects you plan on bringing into the room, the whole procedure can take between 5 and 10 minutes.
So, after I have been in the room for 15 minutes or so, and realize I have to pee, it brings back memories of my childhood.
I remember playing hockey as a little kid, and parents would help you get all your gear on. The first question is: “Did you pee”, to which all kids reply, “yes” and are usually lying. It seemed to take forever to get all the protective gear on, and within 10 minutes of putting on the equipment, at least half of the kids have to pee (or worse…). For those who have never worn hockey equipment as a child, it usually means that to go pee you have to take off almost all your equipment.
So when I have to pee when I am in the isolation room for a short period of time I fondly hear this dialog in my head:
Thor: “Dad, I have to pee”
Dad: “You have to pee already??!! But you said you went!”
Thor: “I didn’t.”
Dad: “Why not?”
Thor: “I didn’t have to go back then”
Dad: “I told you to try anyway. What were you doing when I sent you to the bathroom then?”
Thor: “Pretending to pee”
Dad: <grumble grumble grumble> <and probably – no definitely – some expletives>
Daily life on the cancer ward (where Nadia is recovering from her bone marrow transplant) keeps me drawing comparisons to what I would imagine it would be like on a warzone military base. It is mostly boring, and boring is good. The combatants (patients) require a lot of logistical support – feeding, cleaning, sleeping, scouting for the enemy (blood samples, routine vital signs, urine samples, etc), and monitoring and improving defenses (in our cases medications). The routine is carefully planned out each day with military precision, 24 hours a day, and can change on a moment’s notice, and that is OK and expected. Hurry up and wait.
And we all hope for the best, and prepare for the worst. When things go wrong they can go wrong pretty fast. The logistical support people suddenly become front-line fighters and rush to their action stations. The enemies vary from cancer, to viruses, to bacteria, to infections. All of a sudden the years of training and experience come to the forefront, and lives are saved. Through skill, knowledge, precision, and logistics, the combatants live to fight another day, and eventually return home to family.
And the sad, sobering truth is that not all the soldiers make it out alive. We recently experienced our fist loss on the ward, and it was hard.
But we will get through this.
We will soldier on.
We will get through this together.
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Remember when Nadia spiked a temp 2 days ago? The cause might have been the bacteria viridans streptococci, but they don’t know yet for sure. She is on special antibiotics for it just in case. We will now more soon (maybe a few days) since it takes time to grow these things in a petri dish.
For someone with a functioning immune system, this bacteria is nothing to worry about. For someone without an immune system, it could become serious. Thankfully our doctors are on top of it!
The specific antibiotic they are using to fight this bacteria gave Nadia a slight rash near the end of the drug infusion. Nothing Benedryl can’t fix! Nadia is acting like a normal 2.5 yr old. Busy as can be. 🙂
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Nadia dancing without IVy! There was about 2 hours today where she did not need IVy to administer drugs and fluids, so she got to taste freedom!
During the day, we turn our bed into a Chaise Lounge 😉 This saves space in the small room, and provides an extra seat. Yesterday mommy and daddy watched a TV show together (first on in weeks!) while Nadia slept.
Photobooth style!
Can anyone tell us what was going through Nadia’s head in this series?
Today Nadia had a platelet transfusion – Thank You Donors!
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We had a bit of a scare this morning. The nurse came in and did Nadia’s vitals and everything was fine. Later on I learned that Nadia was actually awake when the nurse came in the room. I was still half-asleep, not wanting to stir too much to try and get Nadia to sleep as much as possible. I really think sleep is important. The nurse said that when she was doing the vitals Nadia kept shushing her (in a really cute way, of course). It was like she didn’t want to wake up her daddy. A good girl. I think I’ll keep her 😉 .
As the nurse was leaving the room Nadia noticed I was awake, expressed her excitement and gave me a hug. A really nice hug. A really long hug. She started shivering. The shivering was getting worse. I (reluctantly, because it was such a nice hug…) told her to hold on a sec while I got her jacket and changed her wet nappy. Maybe she is just cold, I thought.
This did not help. I started cuddling her close trying to warm her up and it dawned on me, maybe something is wrong? It seemed unlikely since her vitals were fine right before we had our first hug of the morning, but hey – we are in the hospital, why risk it. So I pressed the call bell.
The nurse came in and I told her Nadia was shivering violently, could she have a temperature? Sure enough, she did. She ‘Spiked a Temp’.
Soon after we saw the doctor, they started some antibiotics, some Tylenol, and Nadia was back to her usual self in no time. The doctor told us it would be very unusual for a bone marrow transplant patient not to spike a temp. I guess they forgot to tell us this. But we know now.
Remember, Nadia’s immune system has bottomed out. Actually, today it officially bottomed out. The white blood cells and neutrophils are both too low to measure. Nadia is in a very delicate time where she can catch anything and not be able to fight it off. She has no immune system. We have to put our trust in our doctors, nurses, isolation procedure, and drugs now until her immune system starts growing again.
So, Nadia will remain on ‘broad’ antibiotics for now. These broad antibiotics handle most common, nonlethal (in people with immune systems) viruses. They took blood and urine samples today to see if anything dangerous caused the. Since they will be trying to grow things in petri dishes, the longer we go without hearing anything means that nothing has grown in the dishes so far, which is good news. So no news is good news 😉 . If something does crop up they will specifically tailor the medication to attack that particular virus. It is a bit scary, because we are in a hospital, where people end up when they have the most serious viruses. But this is also why we are in isolation.
We were also told that when the new stem cells start to engraft, we are to expect Nadia’s temperature to spike. But it is too soon for that at day +5!
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“I like this one. One dog goes this way and the other dog goes the other way, why not?” “One dog is going East and the other dog is going West, so what?”
(couldn’t resist)
(I miss Einstein)
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Our Day +17 post was about how bathtime works in a BMT isolation room, and we lamented our missing ducky. Well, a friend of a friend (the kindness of strangers!!) gave us one of their duckies! Nadia was soooo happy. Thank you Lucy (and Leigh and Colin) 🙂 . Nadia is a very lucky-ducky girl!
