Day +186 • Back To "Our Normal"

Stunning...

I just can't get over this photo I took and created. I just snapped it after a usual bath time. This is one of my most favourite moments in the day with my sweet girl...when I snuggle her all up in towels after a bath.

She's happy and doing so well this week. 

•Bella has now spent 529 days/nights in hospital, total, from birth.•

Summary of Bella's Recent Hospital Admission: 

25 days

Aug. 24th - Sept. 18th 2015

Unit 1 at ACH

1st week: fight off a Micrococcus bug infection of her blood. 

2nd week: Caught Norovirus and fought that off.

3rd week: Find out how to deal with the new diagnosis of an extremely rare bug called NTM-MAC. 

4th week: Work on balancing her fluids, lytes, potassium, sodium, urea, creatin, etc. 

In those 25 days Bella had underwent: 2 CT scans, 2 blood transfusions, 2 ECGs, 1 ECHO and 28 blood draws. (Thank God she has a central line for all those blood draws eh.). And all of that because of being admitted for a fever, infection and virus. Side note: I don't think Swift Current could not handle any of that. A tiny eye-opener as to why we are still in Calgary. But we'll get to the 'when we are home' discussion later. 

Even though we are out of hospital and back to the Ronald McDonald House Bella's doctors continue to check Bella's electrolyte levels and sodium levels. Her fluids have been really hard to manage/balance. This is because of a few reasons: her kidneys have been damaged and don't have reserve, aka- they need much more time to get over episodes of viruses and antibiotics, Bella's has no colon, she's on a harsh post BMT immune supressent med called Cyclosporine that causes issues with almost everything, and she is still recovering from the Norovirus. 

Even though we can strictly manage Bella's fluids via her Gtube in her tummy, her lytes and fluids have been tricky to balance because of all those reasons I just mentioned. But we are getting there. She's feeling great and the docs are checking her levels twice a week. It was a rocky road in hospital after she had puked the one day, then wasn't allowed to eat, was on IV fluids, etc. So she needs way more time to get back to her "normal" and balance her fluids. 

I was quite upset because her eating and drinking skills were so amazing right before the admission. Those definetly took a hit and she has to work hard at getting back to where she was again.  She'll get there. 

When Bella is admitted in hospital it's bittersweet. It means she's not at her best, but it also means Lyle and I can enjoy breaks together. While Bella was naping we had lunch on a downtown patio during a beautiful afternoon. 

That New Rare Bug

So it is a big name and that's why I use the shortened version: NTM-MAC. In a nutshell this extremely rare bug that the doctors never see was found to have grown from Bella's recent lymphnode biopsy surgery. This bug would do nothing to you or me because our immune systems would not let it harm us. This is why we never hear of it. So Bella's doctors are fairly certain she had caught it before we even knew Bella had SCID, way before her bone marrow transplant when she had no immune system to fight against any bug. This MAC bug could only harm a person who's immune system could not gaurd against it. 

So what do we do about it? Well we support Bella's growing immune system with 3 antibiotics for a year. And a year once her immune system is actually fully working. So Bella will actually have to be on the 3 antibiotics for over 1 year. We are hoping we see her system rid the bug before then but her doctors tell me this is the course for this bug and these drugs. I'm still not sure if they will still do surgery to cut out more of Bella's larger Granulomes (large nodes). Her doctors are currently just watching to make sure the Granulomes shrink and not increase in size. The antibiotics should be enough to rid this bug from Bella's system.  Right now the nodes are like bumps under her skin and I can feel them on her skull behind her ears. So far these 3 antibiotics are proving to be not too harsh on Bella. She does not have diahrea from them but I'm wondering if they are making her urine harsher on her skin. Poor girl has quite a sore bum but not from diahrea. I will have to ask her docs about that tomorrow. 

The Night of No Sleep

You may remember my post on Bella's Facebook page from Friday, Sept.18th when we were discharged from hospital... Well sort of. We weren't actually out of hospital until 7:30pm and then back in a 1am - 4am because of a fever.. So we thought. Yes, I have a newer, better thermometer now. Ugh. I was concerned with Bella's temp that night and what woke me to check it was her grunting with breathing. She also felt hot all over. However after the docs checked her out and took blood cultures nothing ever came back and her fever was gone. Not sure what happened that night but I must say this grump bear may need to send the unit 1 nurses an apology note for the few that had to deal with quite a battle-axe that night. It's was a perfect storm. A month of little to no sleep in hospital followed by a night of worry and no sleep the day we get discharged! I was so upset and stressed. I'm glad it ended up being nothing. 

Bella's team takes the slightest fever or issue with Bella VERY seriously because she is a SCID case, which just has had me on edge. For Pete sakes they kick other patients out of the unit to make room for Bella! She's literally VIP on unit 1, no joke. Even now, I must call even if Bella's amount of stool increases in a day. Any little change, they demand to be on top of or have her admitted. It's wearing me out a bit, but I'm remaining strong. As much as I don't want to have her go back in to hospital, it's good to know her BMT team of doctors takes everything very seriously to keep Bella safe. 

Forever Daddy's Princess 

6th Month Immune Panel Bloodwork

Even though Sept. 25th 2015 marked exactly 6 months from Bella's BMT, they drew her panel on the 15th. I hope to hear about the full results by the end of this week or next week. They take 2-3 weeks to come back. So far all Bella's counts remain stable and increasing. The question is have they increased enough for us to set a home date for Swift Current?  Ie: Is her immune system proving its working well enough for Bella's doctors to be comfortable sending her home, 6 hours away. Well the doctors are hopeful because they have already made a couple huge decisions that have us really happy and excited. 

First they started weaning Bella's main BMT med: Cyclosporin, the one I just said causes issues with a bunch of stuff. This is a HUGE deal! Weaning this med is calculated out at 10 weeks until completion. Now that the weaning has started we don't have to draw levels anymore either! If you remember, the 9 days before Bella was admitted they were drawing (blood) levels every day because this med has been such a problem. No more of that! Accessing her line that much causes risk for infection. No more of that! This is the med that is still suppressing Bella's immune system so her new cells don't come in too fast but instead just the right speed. Once this med is done, we really see Bella's immune system working entirely on its own!!!  So when his med is done that would bring us to the end of November. And it takes a couple months to completely leave Bella's system. So we would see Bella's immune system fully working on its own by Feburary 2016. She would still be very fragile as at that point she will be 2 years and a few months old without any immunizations yet. 

 Once this med is done that means a bunch of the other 8 medications Bella is currently on are also done! And the most exciting news about weaning this med is that her doctors have said that they are comfortable with us being home for the remainder of the wean, which would be in 4 weeks. Therefore, there is a good chance we could be home by the end of October. BUT, there are a few other major things that need to fall into place before then, one of which being a 9th surgery for Bella. 

Before We Go Home 

A few things need to be looked at.

1. Weaning Bella off this major Cyclo. med needs to go well. She must not develop any rashes, sickness, etc from coming off this medication that she has been on since November 2014. 

2. Bella must have a 9th surgery. Bella's doctors are not comfortable sending Bella to Swift Current with out a central line aka: her Broviak sewn into her chest. However, this line poses risk for infection. But it is also life saving incase of an emergency and provides easy access. So they are converting it to what's called an Ivad Port. Instead of lines dangling from her chest, the port sits like a little button under her skin. Much less risk of infection and it'll will mean Bella still has a cvc line for blood draws, monthly ivig infusions and any line access that may come up. The Ivad port is also great because then I don't have to cover Bella's entire chest with a bandage dressing or Saranwrap for baths! 

Ivad port

This photo shows 3 types of cvc lines for blood draws. The picc line in the arm, the Broviak with lines dangling out of the chest (what Bella has now) and the Ivad port button above the heart (what Bella will get). We still need to find out Swift Currents experience with ports. The nurse would still need to poke through Bella's skin to access the port pad but numbing cream on the area can help and it is quick access. It would never involve fishing around for a vein while Bella's crying in pain. 

3. The 9th surgery will also involve Bella changing her long Peg Gtube to a Mic-key button. This would mean she would no longer have the long tube dangling from her stomach either. Instead it would be a button on her belly with a little cap. Switching from the tube to a button is actually usually bedside procedure, meaning I could do it. But not for Bella. Her surgeon who knows her bowels well from the previous surgeries explained why this must be a surgical procedure. Right now Bella has a little disk inside her stomach holding her peg Gtube. Usually you would cut the tube, pull it out and let the patient pass (poop out) the soft disk. Bella's surgeon said no to that. They don't want to risk any complications of allowing her to try and pass the disk. So they will surgically remove it.

 The button she would have would look similar to this pic: 

It's exciting to start organizing for home but at the same time it's terrifying. So much needs to happen and it's hard to sleep at night when you have a world renowned  immunologist telling you she needs to be 'comfortable' sending you home to Swift Current. 

I have a lot more phone calls to make. We need to make sure the SC pharmacy understands and can make Bella's Meds. We need to secure a suitable Pediatrician and make sure there is always someone available and capable for Bella's unique care. Swift Current, please don't let me down. You are my home, I want to be there, not here. 

Bella and I just spent a wonderful weekend with my dad. Grandpas are great at projects! Bella's playtable is just too short because she's a growing girl, so my dad was able to make new legs and make it taller so Bella can stand at it. 

From yet another tidal wave of hurt and hardship that has come upon my daughter on this medical journey she endures, comes the anchor of love from our family, friends and even some strangers holding us steady through the storms. Honestly, I don't know if I can say "Thank You" in one way that fulfills how my heart truly feels from all the support we have received recently. 

My cousin Sandra made the Walk of Hope for Bella through her hard work in the Queen City Marathon. She raised money to support Bella. The blessings Bella receives from this support makes my heart full of joy. It brings me relief. 

My heart is full from everyone's generous support and I can't thank you all enough. I've recently had friends I've barely seen give in ways that melts my heart and helps me through the daily struggles. Thank you. Thank you for the flowers, the gifts, the cards, GoFundMe money, messages, letters, texts, clothes, visits... I will not forget any of it, it all means so much to me. Thank you so much to my sister in law's, sister in law who ran in the Rock the House Run for Bella! In Bella's name she supported the Ronald McDonald House. Thank you Trista. And Thank you to a beautiful girl I know, Natasha for the heartfelt support of the Fall Photos for Bella. Even just writing this now brings me to tears. I'm overwhelmed with how much love so many of you have shown for my family. 

I want to say, "Thank You" in a special way. For all of you that have given to us in anyway you can I want express my thanks when I can't be there to hug you, I  can't get out to pick up a card or pay you back. But until then, I wanted to write this for everyone that has supported us in so many ways lately, this is for you: 

"Once Again,

We have reached calm waters.

Many waves of hardship have come 

But your love and support continues to be the vessel that sails us home."

On to day 520 in hospital • Day +169 post BMT

Like many of my blog posts I often can't start typing. I stare at the screen, paralyzed, trying to fathom the pain that's encompassing me, trying to fight that off and put it into words. It's extremely difficult... And then I just stare some more. My mind continues to race and dart like a ball in a Pinball machine. The blur mangles my unfinished thoughts and sentences. I just continue to stare at the screen. And then this comes out: 

It's been an exhausting 2 weeks and 2 days admitted in hospital with Bella and we don't get to leave yet. We have both taken hit after hit, rebounded... just to take more hits. I'm about done, but I'm not allowed to be done. Can enough punches just eventually turn you into rock hard steel? 

This has been our recent weeks in a nut shell: 

Aug 24th- admitted for fever

Fight the bug/ 10 days of antibiotics

Sept. 3rd- (2 days before we are supposed to be discharged) Bella gets real sick and is vomiting. 

Help her recover 

Not discharged on the 5th. / Now she's fighting something else.

Bella continues to have horrible fluid imbalance, continue admission.

Sept. 8th- Find out it was the Norovirus

Talk about discharge once her fluids are balanced on her own.

Sept 9th- Receive horrible news about her lymphnode biopsy results.

Continue hospital admission...

Ya, I'll get to the biopsy news later in this post. I've basically been a mess about it since 3:30pm today (Wednesday). How many rare on rare on rare issues and hits can one little human take. I want to scream so loud right now that security would have to remove me from this unit. 

But then I guess I'd leave you all hanging... So I'll contain my anger for now and continue this post. 

Before we even got to Sept. 3rd, and Bella some how catching the Norovirus, I was exhausted from this hospital admission. Bella was used to her nights at RMH. Though she spent her first 17 months of life falling asleep to hospital beeps, lights, sounds and sleeping sound through it all and right through many diaper changes... That went all out the window once she got a taste of real peace and quiet at RMH for 3 months. So this admission back in hospital has proven to be a feat. Between her waking up countless times and crying for me and me already not sleeping anyway, and getting up to settle her or shut the monitor off or rather rip the thing off the wall and beat it with a bat... I've been a zombie since August 26th anyway.

It's better this week. We have worked out  her being off beeping monitors at night, my mom and Lyle have been around to give me breaks and reboots. But mentally, physically and emotionally I'm still drained and trying to catch up. 

How bout we just throw this into your already shitty mix eh! (Can you sense my Hulk emerging? I feel my purple pants starting to rip)

Bella's Blue Lumin of her CVC (ie: her blue noodle) got damaged, weakened and needed repair. This coming after we were just stressing, praying & hoping to not have to remove her life line due to a bug that contaminated her blood from it... Then it gets damaged. Thankfully this did not wreck it enough either and Bella gets to keep both of her "life line noodles." Thank God. Her yellow lumin is larger and should be used for the majority of blood draws. Moral of the story...please don't reef on her tiny blue lumin for 15min to try and draw blood and damage it. Ya, that happened. I'm really really mad at myself for not waking up in time to prevent this. Our nurse had to do blood work at 6am and I was sort of half asleep half awake so I knew the nurse was drawing blood. After 15min they were still there... I should have clued in and woke up. Then the next thing I know, they are in telling me her lumin is damaged and needs repair. After realizing what all happened I immediately requested it to be made very clear on Bella's chart to only do blood draws from her yellow lumin. 

Sick on Sept. 3rd

From that Thursday until yesterday we did not know what caused Bella to be sick. She had one day of vomits, a slight stool change and then horrible fluid/level fluctuations that her docs had lots of trouble balancing. We now know it was the Norovirus, a common stomach flu bug. She most likely got it from being in hospital. It was reported on the unit prior to our admission and well I never got to take her anywhere else! We only got 2 days of passes and those were spent in our RMH room. Bella's system took a hard hit from this because she is so sensitive. Her doctor put it in simple mathematical terms for me. You or I with normal working immune systems can take a hit of 10 particles before it affects us and we get sick... Bella's system can't handle 1 particle and she's sick. Her kidneys have both their middle fingers up in the air at us right now as we speak. 

Why is Bella sensitive and her kidneys so angry? This is why: Her first 15 months of life were on constant antibiotics, septic shock recovery, countless medications, then the Bone Marrow Transplant, then the large amount of strong Meds after that, then the Micrococcus blood infection (more antibiotic treatment for that) and now the Norovirus. 

Middle fingers to the world kidneys, I don't blame you. 

So because of all that Bella's kidneys don't have reserve when they receive blows like this, like the Norovirus. So that is also why she could not balance her fluids on her own, she needed a lot of support, IV support.  Between Sept 3rd and now we have been trying to balance and manage Bella's: fluids, water, hydration, potassium, bicarb, magnesium, etc. 

What does this mean for her future? Well, like any normal kid with a strong immune system with undamaged kidneys it might mean a day in bed and drinking more water. For Bella, it would mean her and I back in hospital with the IV fluid support to get her back to normal. How ever long that takes. How might it feel to think that every time your child becomes ill THAT means a stay in hospital not knowing how long the stay will be. sigh**

The good news from this was when her doctors told me this is all fixable, her kidneys will recover they just need time. 

And then the hit of new information came today about her lymphnode biopsy results... And it does not look good for her kidneys. But keeping in faith, I hope I'm wrong and they will be ok. 

In the middle of this stressful week I had a wonderful, thoughtful friend send me a Box of Sunshine. Thank you Chantelle. The delivery time was perfect and it was a much needed pick me up. It brought me to tears cause at that moment, with that amount of stress on me I knew I have friends and family thinking of me and doing what they can. I needed that so bad. Thank you again.

Bella requests medical supplies to play with. She could and has had ten different colourful toys around her and she requests a medical item to play with. She says the S sound for syringes, the K sound for clamps. She points at the chords, blow-by tube, bp cuffs, etc so I retrieve them for her, and she's happy.

Bella and Grandma on her last day of pass from hospital (Sept. 2nd) Bella has been on isolation since Thursday, Sept.3rd. Isolation for those of you that forget is when Bella is not allowed to leave her hospital room and who ever comes in must wear mask, gown and gloves. Looking back and realizing now she got Norovirus from just being in hospital, she should have been on protective isolation from the moment we walked in the doors, to protect her. I'm discussing this with her team of doctors today. The Norovirus infection could have been prevented.

Lymphnode Biopsy Results: Round 2

I had to receive this news alone, without my husband, and as soon as all 6 doctors left the room... I broke down into a puddle of tears on the floor. 

And what resonates in my mind is what Lyle said to me right before he left this past weekend. He said, "Hunny, just turn on the Jays game. It'll be like I'm still here."

What I would have given for a Jays game to be on at that moment, in the room after the doctors news. But it wasn't. However  Bella has been enjoying the sports channel being on a lot more often this week.

This scenario has happened too many times and my heart is ripped out of my chest each and everytime. And everytime it's a group of doctors, telling me horrible news, I don't have Lyle with me, no one is around and I just sob. 

A bug has grown from Bella's lymphnode biopsy. It's an EXTREMELY RARE bug. I'm sick and tired of hearing them say, "This is rare, we've never seen this, we don't know how or why." I'm sick of it! Bella has had enough of this and I just can't take another RARE diagnosis. 

The bug is called: Non- TB (Tuberculosis) Mycrobacteria. Or NTM.

As I mentioned in the previous blog post Bella had surgery to remove 2 of these larger nodes from her neck. They checked them for PTLD (cancer) and that was negative. Then before finalizing the report they found a bug has grown, the NTM bug. They just told me this yesterday. I want to go back to when they said these larger lumps are just her New Tcells reacting normally to normal viruses we already have in our systems. No, these lumps have not gone away and what the docs think to be happening is the Tcells are still doing their job but trapping this rare bug inside the nodes and causing them to become these larger Granulomes. Bella's Tcells are protecting her so this bug does not go into her blood system. They are checking for that right now and just took the bloodwork last night. 

Why is this so bad? 

On Tuesday they just finished telling me the smallest hit sets Bella's kidneys back, because they have no reserve. And then Wedneaday they hit me with not only this news of a rare bug she has, but that the treatment would be a YEAR on antibiotics..minimum. They just finish telling me her kidneys can't handle small hits like the Norovirus and need in hospital IV support to recover and THEN they hit me with the news of her possibly needing antibiotics for a year, NOT what her kidneys need. In fact it's the opposite. They needed time to recover not a diagnosis involving a year of antibiotics.

The doctors are hoping to know the sensitivity of this NTM bug by tomorrow. They need this to know exactly what antibiotics to use to ensure it leaves Bella's system and that her nodes shrink and go away. There is a possible 20 different antibiotics to use depending on this bugs sensitivity. I'm praying that it only requires a mild antibiotic. If it's a bad strain of bacteria there is one antibiotic that would basically ruin Bella's kidneys to the point of needing a kidney transplant... We DONT want that. 

They think right now that it may require a minimum of 3 antibiotics for minimum a year. That is also a lot of money. The day I planned on celebrating Bella being off all BMT medications has now transformed into a disappointing day of more long term meds. 

How did this happen? 

They don't know and they may not even be able to tell me. What they do know about NTM is: it's in the environment, soil, water, non-treated water. Etc. Its in the environment but not explainable as to how Bella got it.  Its very confusing to me at the moment but her Infectious Disease docs can tell me more when they receive more specific sensitivities that the bug has. As for now I can't beat myself up over a possible prevention, there wasn't any. 

NTM is even more rare in non-immune compromised patients because you or I could walk outside and get it, but our working immune systems could handle it. Bella's team of doctors have also not seen it in any SCID patients. It is mind boggling how Bella got this bug because she has been robbed of being in the environment! She's been on over 300 days of isolation! Of all people, Bella has been strictly protected and lived in a hospital her whole life. We just don't know how this has happened, but it has. Rare. 

Since discovering this bug that was found in two of Bella's lymphnodes the doctors have been trying to figure out how to best tackle this and get it out of Bella. At one point they actually considered cutting out every node. 

Can you imagine?! She has these nodes on her head, neck, armpits, groin, abdomen... She has many. You can't just CUT out every node! How do you even know if every one of her nodes is infected!? You don't. Hence the start of antibiotics. They can't just cut into her little body to take out all the nodes, but they are still considering cutting out the larger ones. So possibly another surgery. Right now they are discussing another CT scan for Bella (her 3rd) to help with these decisions. 

Prayer: 

My prayer request list for Bella is a mile long but she needs it so so much. Right now I'm praying that this is all just wrong, the lab is wrong, the biopsy is wrong, the rare bug doesn't exist.  I'm just so angry and upset.  But we need to pray that Bella's doctors have the wisdom and knowledge to know exactly what is happening with her lymphnodes and that they can some how know exactly where the bug is and is not and how best to treat Bella. Pray for strength and full recovery for her kidneys. Pray that how ever the doctors need to get rid of this bug that the medications Bella requires will not harm her kidneys or cause any long term damage. 

We will know more on this new diagnosis tomorw after more blood work, tests, etc.

Bella's Current Counts 

Aside from everything else going on Bella's new immune system is still growing very very well. Her counts continue to go up and remain stable during this incline. Her virus fighting Tcells have shown growth! In terms of numbers from her last large panel of blood work, the CD3s have gone from 10-60! Bella's immunologist will be coming by soon to show me the numbers on paper and talk about her continued progress of her growing new immune system. 

Her next big panel should be drawn next week on Tuesday. This will be her 6th MONTH PANEL! This is the one that the doctors hope to see the most improvement on. This is the panel that we have hoped tells us we can go home. They should draw this panel of blood work from Bella next week and then a few weeks after that we will have the results. 

So please continue to refrain from asking me when we are going home. I'll be honest, I despise that question. And like I've said before, trust me, you won't have to ask,to know when we get to go home. 

I also REALLY hate it when people ask me how I am doing. Please stop asking me this. I don't want to answer it and really, I'm an open book. You just have look at my face. I hate to be a grump about it but it's really wearing me out. I know I really can't prevent it just by writing in this blog, but I just wish that if anyone sees what I am going through, just know. Don't ask, just know. Please. I'm not sure how else to deal with this right now. Maybe I'll come up with a jollier response at some other time. 

Thankful News

The Ronald McDonald House sent a Thank You card to Bella's grandma and Grandpa (Lyles parents). As you can see from the card, their friends made a generous donation to RMH in their name. So the RMH sent Lyles parents a beautiful card.

As hard as it is to call the RMH home right now, they are. I go back and foreth from the hospital to RMH right now and it's like a boost that I need each time. The support that RMH has received gives them the ability to feed me when I don't have the energy to cook or the time or money to go and buy groceries. They make this happen for families. By supporting the RMH you are essentially supporting Bella and her family, Lyle and I through our toughest times in life. It means so so much. Thank you for supporting RMH Southern and Central Alberta.

September is Newborn Screening Month

This is mainly a United States thing. I follow the Immune Deficiency Foundation on Facebook and they share tones of valuable information related to Bella's condition, SCID. They share the importance of newborn screening and the USA have almost every state conducting the screening now. I still need to find support in advocating for Canada. If Bella was screened at birth I can't even list all of the painful scenarios that could have been avoided. What's previlent right now is the first 11 months of Bella going undiagnosed harmed her kidneys and caused a year of trauma and antibiotics. Could have been prevented if Newborn Screening was available in Saskatchewan for when Bella was born.   

Here is a link that talks a bit about SCID from the IDF Facebook site: 

https://www.facebook.com/ImmuneDeficiencyFoundation/posts/10153009132131781:0 

Keep sending the well wishes!

Because we are still admitted Bella can still receive the electronic well wishes. These are so exciting for her to receive. And I'll admit, I love getting them for her as well. I am not sure how much longer this admission will last but for now (after the recent news) we'll most likely stay in hospital for another week. So no matter where you are, who you are, please send more Well Wishes Bella's way! 

Her full name: Isabella Thomson

The link: http://www.calgaryhealthregion.ca/ACH/pff/mail.html 

Apple is Funny Mom

A couple weeks ago I caught Bella's beautiful, contagious laugh on camera. It needs to be shared with this world, so I added it to YouTube on my channel. Please feel free to enjoy and share her adorable chuckle. 

https://youtu.be/jQYP2dU8tfM 

Curve Balls and Rollercoasters

When people ask me on a whim, "How are you doing?" Instead of quickly muttering an easy "fine, busy or good" because I don't have an hour to really tell you about the last 21 months of my daughter's life... 

I'd like to say, "Imagine yourself  on a rollercoaster for the first time, it's tracks fly you through a never ending jail cell and the only way to stay alive and make it to the end of the ride is by dodging  firey crossbow arrows shot straight at your heart. 

That's how I'm doing. 

It's a good thing I didn't have time to  write this blog post Monday or Tuesday night. That would of just been an angry, sad tone, negative sounding blog post. 

  "And we just don't need that kind of negativity around here now do we Kyla!?!" 

  "No we don't, Positive Kyla."

  "Now let's hear a cheer for Bella fighting the bug, no fever today, antibiotics are working!" 

  "But we are admitted in hospital, Bella is hooked to lines and cords again, flashbacks of past hospital life make me cry, Bella's hooked up to monitors as well."

" I told you to go home negative Kyla. Go on now, git."

It is extremely hard to stay as positive as I sound most days but I strongly believe that speaking positive brings positive. I don't want to let the overwhelming agonizing emotions from every curve ball bring me down when Bella needs my energy, she needs my prayer, she needs me ready. Life is throwing us every curveball, bad card, and crap that it has in its pockets. But Bella's going to hit everyone of those curveballs out of the park. 

So lets start with the most recent rollercoaster ride: Our recent admission back in to hospital. Monday started as a normal day but by 3pm Bella seemed a little off. She wanted me to hold her and she just nuzzled into me for a solid half hour. I thought that was a little strange and her energy disappeared and she felt warm. No pukes, no diareah, no crying, but a high temp, a temp of 40! 

Just after I took her temp. 

So her BMT nurse said bring her in right away. They took blood cultures to send off, checked her all over and we were admitted one unit 1 at ACH by 4pm. 

And it all comes flooding back.

It's only been 3 months out of hospital but coming back brought a flood of agony and anger I was not prepared for. And it all hit me as  soon as Bella was hooked to IV, hooked to the monitor and poked for blood. They had to do a heal poke for a cap gas, but also drew blood from her central line. The weighted feeling of having to be back in hospital with Bella is just the raw feeling of breaking down and crying, alone, in a jail cell. With Lyle having to be back in Swift Currenr for work, it's even more difficult. Monday night was full of unknowns, why the high temp? Bella's heart rate was almost 200, she was puffy, couldn't sleep, in pain, fever, and we didn't know why yet. I didn't want the fear and reminders of her Sepsis attacks overwhelm me but they were there, and I just prayed and cried and prayed. 

Not feeling so good with fever. 

So Monday and Tueaday were pretty sleepless. I just couldn't keep my eyes off her and the monitor that showed me her stats. Waiting for the antibiotics to do their job with every next dose and pray the docs figure out what's happening right away. They knew right away there was infection but we needed to make sure it didn't affect her line. She currently has too much blood work these days that having her keep the central line is essential so that they don't have to poke her for blood work. 

Poke... Such a light, pretty way of saying what actually happens: You hold your child while they root around for a vein. And your child has to endure as many jabs as it takes because they need the blood to know exactly what her immune system is doing, her counts, her med levels.  I just can not fathom them having to poke Bella for blood, this line (CVC) must remain clean. 

So fast farward to today. It's day 4 that we have been back on Unit 1. They have taken blood cultures from Bella everyday. First they take them to figure out what bug she has, if she has one cause it could of been a virus. Then we wait for the blood tests to come back negative. So they found Bella had a bacterial blood infection. One that is common to get when you have a central line (CVC) sewn into your chest. Good news is they know what it is and can treat it. It is a Gram positive bug of the Micrococcus species that resembles Staph. (The bug that almost killed Bella and sent her into 4 Sepsis attacks on March 19th before her BMT was a Gram negative bacteria.) This is a totally different scenario now, and on the other side of Bella's BMT (Bone marrow transplant) with a new working immune system that can fight bacteria now. The docs told me this recent bug is on our skin all the time, and can find its way to a central line very easily, in any person. It's nothing we did wrong when cleaning her line or what not. This can just happen. That information is quite hard to swallow when you are doing everything thing in your power to prevent infection. 

So they run the antibiotics that kill this bug and it should go away. Crappy news is this course of antibiotics is 2 weeks IV. They also did an echo of Bella's heart to help determine if this bacteria was forming and growing in Bella's line. That would mean they would automatically have to pull her line. But it's not, so they don't, thank God. 

Bella having her ECHO done. We did eventually have to take her dressing off so the tech could get an exact picture of the tip of Bella's CVC and her heart valves. 

Another good sign is Bella's fevers stopped. They found the sensitivities to the bug, and have the right antibiotics to get rid of the whole infection. So it's working and she's feeling better. I'm not allowed to take her on pass (Out of her hospital room) until they get a negative culture back from her daily bloodwork. This usually takes a solid 48 hours to say for sure if it's negative. So hopefully the blood they took on Tueaday or Wednesday shows negative by tomorrow. They also tell me the 14 day antibiotic course only starts when that first negative result comes back. So we may be in hospital until Sept. 9th. 

On a random side note, I wouldn't be walking Bella outside at all in Calgary this week. It's odd how upset I am about her being isolated in a hospital room again when I would not be able to take her outside anyway because of the horrible thick smoke in the air from the wild-fires. Calgary's air quality is extremely poor right now. 

Bella's 8th Surgery

I was about to write a blog on our recent weeks and Bella's 8th surgery, then Monday happened. So I'm a tad behind with everything that has gone on. So Bella had her surgery on Wednesday, Aug. 19th, her 8th surgery to date. I mentioned a bit on her Facebook page (Isabella's Mustard Seed) why this surgery had to happen. So I'll also sum it up in this post. 

What first happened was that Bella's BMT docs over-shot her immune suppressant med (Cyclosporn). This can have an effect on her Lymphnodes. They had been tracking the size of a few of her nodes for month and a few on the right side of her neck got larger and stuck around. This along with some of Bella's numbers that shot up, alarmed her docs and they wanted to check it out quickly even though they felt they were looking into things quite early, they wanted to be extra safe. 

These numbers that went up could mean 2 things: 1. Her lymphnodes are reacting normally to a virus we all have or 2. She could have PTLD (Post Transplant Lymphoma Disease), cancer. 

Talk about a slap in the face for possible outcomes. Great! The regiment of Meds to cure our daughter may have also gave her cancer... No thank you. 

So they planned Bella's surgery to remove these lymphnodes and know for sure that there is no PTLD. The anxiety Lyle and I felt for those 2 days waiting was horrible. Thankfully on the Thursday (before we got the biopsy results) her BMT nurse called me and said the numbers have come down. This was a good sign that they did just over shoot her med dose, there should be no PTLD and that they needed to lower this med dose and that worked. So a good sign that it was not PTLD. But the biopsy of the nodes would tell them for sure.

CT Scan: Bella also had a CT scan of her whole body prior to surgery which also gave us good news. This showed the function of her organs as normal and also showed no other hiding lymphnodes that were of concern. All normal. 

Camera scope: Bella also required a camera scope of her air way and back of her tongue before surgery. This was a crappy experience for her but she actually handled it pretty good. Lyle had to hold her so the doc could put the camera tube down her nose into her throat. I tried to hold the iPad for distraction but she just cried and pushed through it. The doc wanted to make sure the nodes on the back of her tongue were not too large cause that could affect how she was intubated. All precautionary checks before surgery.

The surgery itself was pretty quick but still hard on our little girl. She had to be NPO ( no food or drink) for 13 hours total. For all of Bella's previous surgeries she wasn't eating or drinking by mouth so it wasn't as hard to be NPO. Well it was still hard but in different ways. This time Bella was eating, and knows how to request food when she's hungry. Now that she could eat by mouth and I had to tell her "no" because of this surgery, was heart breaking. The morning was really hard, she got quite upset. By the afternoon she sort of "gave up" on asking and then it was really hard on me. I was just thinking, this is another set back for her. Her surgery didn't happen until 5pm because she was an "add in" to the OR surgery docs that day. She also had to be intubated (breathing tube down her throat for surgery) because they wanted to be extra safe and because they weren't quite sure how she would need to be positioned to remove the 2 nodes from her neck. So all precautions were taken with her breathing. If this was you or I having this procedure or even an older kid, they could just give local anesthetic, cut the skin and remove the nodes. But not in Bella's case. 

She came out of surgery quite upset.   With a sore throat, hence the pictures above of her drinking cold apple flavoured Pedialyte. When she's been NPO that long or sore mouth, she will drink from a bottle for comfort. This is how I know she can suck and drink. So we were really excited that a week after this surgery (August 23rd) she actually started drinking from her sippy cup with the straw!! 

It was also helpful to hear her surgeon's concern about minimizing the scar for Bella. She has had so many surgeries cause so many scars on her little body. It was helpful to hear a surgeon try his best to lessen that and hopefully hide a tiny scar that now sits just under her right ear. 

Bella recovered quite well from this surgery and Lyle and I were able to take her back to RMH that night at 9pm. She was so hungry (and so were we because we tried not to eat in front of her all day) that at 9pm she ate some perogies with us as a late supper. 

Super cute when she sleeps on her belly.

So those have been a lot of our ups and downs lately... Mainly downs with good outcomes. So happy she does not have PTLD cancer and that the blood infection she had is gone and we can continue to use her central line for blood draws. We are currently waiting for the confirmed negative culture date (hopefully it was Tueaday or Wednesday) because from that day, Bella's on IV antibiotics for 2 weeks. I should find out in rounds today from her doctors. But most likely we'll be in hospital until Sept. 8th for her course of antibiotics. 

Thank You Again and Again

I have to say with Septemeber coming up I have been quite sad and depressed about missing my career. I have been pulled away from my job, my family, my life in Swift Current. I've never felt more detached from the world and my own life because of our extended hospital stay for Bella. This all comes flooding in on me this month when my mat leave support is officially over as well. Lyle and I can't thank you all enough for the financial support and generosity for our family. Especially this month, it eases so much anxiety I have. I thank God for the PCIC (Parents of Critically Ill and Injured Children) benefits that carried us for the first 9 months of Bella's hospital stay. That EI support was a huge blessing. And then of course my year mat leave support and the huge support from the Chinook School Division (where I work in Swift Current as a Special Needs Teacher.) 

But the financial EI support is officially all over now and we are still in hospital, Calgary with Bella, for Bella. 

Septemeber being here also starts a clock for me. The clock that would be my mat leave at home with my daughter. I don't get that. Based on what Bella's docs say about Bella's case and when we can be home with her, I can not plan on working again until Sept. 2016. So I'm coming to terms with not getting a year at home with my daughter before I need to work again. 

I notice all the donations on Bella's GoFundMe site and I cry thankful tears. It means so much right now. Thank You.

The Ups of our Recent Ups and Downs.

Santa came to visit in July at RMH!

Bella was able to see some of her cousins! This was so huge for us. It brought me happy tears that she could even just see her family. We broke the rules a little bit for cousin Payten who just couldn't wait to play with Bella. We made sure she was clean, not sick, washed her hands and didn't touch Bella. And they loved playing with a sticker book together. It was pure joy for me to see this. Some of Bella's cousins traveled 8 hours to see her. 

On a walk with daddy, Bella clearly enjoyed the sunshine and some banana! Which she can now say as well. 

How Things Are Going Today • Day +156 post BMT 

Well since Monday we have settled in to our room on Unit 1. Bella has been fever free and happy for a few days now and we want it to stay that way. She has been really cuddly lately. She'll pull me in for a hug and wrap her arms around my neck. She'll nuzzle her head on my shoulder and hold my hand while she snacks and watches cartoons. My baby girl is so good, such a blessing. She has been happy to chat with some of her old nurses and blows them kisses and gives them all smiles. And she has been chatting up a storm and continuing to talk a lot. Her doctor was quite impressed with her iPad skills yesterday. Being locked away in hospital, I don't get to see what other kids her age are doing but I hear from a lot of other people how impressed they are with Bella's advanced iPad and speaking skills. For a few months now Bella has mastered the iPad. Well since she turned one in December for sure. She can turn it on, swipe in to her apps, choose an app game, or photos to look at or YouTube. She'll swipe and click to get where she wants. She'll goin in and out of app games and play them. She'll also swipe and select her own YouTube cartoons. It's pretty cool to watch. She even knows when to swipe up and down or sideways. 

Our room (this time) on Unit 1: 

It's a mansion! This double room suite has made it a lot easier to stay in hospital this go around. It's technically a long term stay room but the unit has been so overloaded lately that it was the only spot available for us when we came in Monday. It's quite nice to be able to go into the side room and eat supper with Bella in a more "normal" kitchen looking area. 

Bella's Walk of Hope

A huge Thank You to my cousin Sandra for planning this walk of Hope for Bella. My mom and sister and cousin are organizing pledges for the marathon my cousin will be in. I can't thank you all enough for this support for Bella. If you would like to pledge or support Bella's Walk of Hope please contact my mom, sister or cousin Sandra. If you need help with ways to contact them you can message me on Facebook as well. (Kyla C Thomson) 

Check this out! 

I found out that through the ACH website you can send Bella messages! They print, seal and deliver the message to Bella in her room here at ACH. This link allows you to type up the message you want to send. 

http://www.calgaryhealthregion.ca/ACH/pff/mail.html 

Thank You For Giving Blood!

Bella needed a blood transfusion on Wednesday. She received blood because her Hemeglobin was too low. I think this is about the 10th time Bella has needed blood in her life. Thank you all so so much for giving blood! 

Day +141 • Recent Immune Panel Results

~ What magnificent change a year can bring ~

Well... I don't need my GPS maps anymore for getting around Calgary. Nope... I know this massive city very well now. It kind of hit me last week, while driving Bella to the Zoo... not a second thought about where to turn, what street I was on. Ya, sadly I can get around Calgary with no problems these days.  

Which brings me to the age old question... again, "When are you going home?" 

Well on Tuesday I had a real long but real good conversation with Bella's primary BMT doc, Dr.Lewis. I have a lot of concrete answers that I am going to try and explain in this post but the main 2 pieces of info that I am most excited to share are: 

1. Bella's chimerisms are ALL still 100% donor! Tcells and Bcells are all still 100% donor. This is the BEST possible news in reference to her new growing immune system. The best results from the panel.

2. Bella's doctors only need ONE panel that shows her counts at the level they need to be, in order to finally send us home. Only ONE panel is needed. And her docs hope to see that panel at the 6th month post BMT mark, September. 

Many Medical Updates

Most Recent Immune Panel Blood Work:

The panel before this recent one showed a dip in Bella's Tcell count. It showed them at 97% and now they are back to 100%. Because there is always a small margin of error in these tests they don't believe the 97% and are sure it's remained 100% this entire time. This may seem like a small difference but its not. Anything under 95% they consider "mixed" (donor and recipient) and that can complicate things and cause issues. But she never went there, she's still 100% donor for all her cells and this is the best possible outcome for her immune system to work properly on its own.

Dr.Lewis was very happy to tell me that all her panel results and counts are exactly where they need to be. Her immune system is growing and showing recovery. 

CD3s: The major virus fighting Tcells are still in the gym working out and building themselves up. These suppressor Tcells are expected to take this long to recover and prepare to fight viruses so the docs are not surprised by their count still being low. These Tcells are at a ratio count under 300, telling the doctors they are not ready to be tested just yet, against any cold or virus. In order to change Bella's isolation protocol and allow her to be around "possible" sick people or children, or go home, these suppressor Tcell's counts need to be in the normal range. Her doctors hope to see them in that range by the 6th month mark (September). 

The Home-Time Question

The main reason I had a long discussion this week with Bella's doctor is because Lyle and I are getting anxious. We needed more concrete answers and  information rather then the usual, "wait and see, month by month." It's also really hard on Lyle to only hear what I relay from week to week and not be here constantly, like me, getting new info and updates daily. It's like a real bad never ending game of Telephone. 

So we asked better questions his week and received more concrete answers. We also received more reminders to aid our frustration.  Dr. Lewis reminded me that though they are happy to hear me ask all these excellent questions for clarity, there is a lot that is difficult for them to answer because Bella is a First Time Case for them here in Canada. Every change, every slight new occurrence (good or bad) is difficult for her team of doctors to react to because it brings on a new decision. They don't have hundreds of cases to compare to (like with common cancers) or previous SCID cases like Bella's to know what to do from... She is it, no other case like her, no similar previous decisions made that they can copy. We are, Dr. Lewis's exact words, somewhat of a "guinea pig case." Bella is way more immune compromised then any other patient they have or have had. They have no choice but to be extra cautious and careful with her case so they want her here, they need her close. Dr.Lewis made it very clear that this need of her to remain in Calgary is for the sheer fact, we live 5 hours away. Going home too soon, before her counts are at the required level, regardless of how amazing she is doing... Is too much of a risk. Those 5 hours between here and home is too much of a risk. 

So we asked, "How many panels, counts, tests need to show Bella's counts at the required level in order for us to go home. 

The answer: One ! 

Now, based on other BMT patients (not extremely rare SCID BMT patients like Bella) they have seen these counts be where they want at the 6th month post BMT mark. And for us this will be September. They do Bella's immune panel every 3-4 weeks so we could see it sooner (this one panel with the high enough counts, high enough suppressor Tcells) or her doctors have told me they expect to see these higher normal range counts come Septemebr. It was nice to know we don't have to go month by month per say, but to know more specifically what they expect and when they want to see it by.

I forgot to mention this was all news from Dr.Lewis Bella's primary BMT doc. Bella's  primary Immunologist Dr Wright is still away and hopefully we'll get to hear her viewpoint on everything this coming week. Dr.Wright has the ultimate say on when we leave Calgary. 

Bella's next Immune Panel is already scheduled for next Tuesday, Aug. 18th.

New News

Bella has a CT scan tomorrow morning.

Here's why:

Her doctor has been following her lymphnodes for the past month and specifically a few near her neck area. One has possibly become a little larger. This could be 2 things. We are hoping that her lymphnodes are in a normal reactive state and that is all. Everyone has the EBV (mono bug) in them and it can be dormant. Bella tested positive for it the first time this week and that is completely fine. It may just be "awake" and her lymphnodes are reacting to it normally. They see this through her count for this being at 3000. Recently it jumped to 

30 000. Not to worry but this increase in number and the  lymphnode's size sparked a reaction from her docs to check it out early as to get ahead, incase it is anything else.

We DON'T want this to mean the lymphnode has transformed in a negative way to malignant involving PTLD. Sorry I only remember the acrinim but we don't want this to be a PTLD/malignant/cancerous issue. Besides, Bella would present as a lot more sickly, and the numbers would be in the 100 000's range. So we can be reassured that her docs are jumping on this really early, checking it out with a CT scan tomorrow and we pray the results show normal reactive lymphnodes. Our BMT nurse reassured me this is an early intervention to make sure they stay on top of any change and that she currently has a patient (and has seen patients) with this number being 200 000 and no sign of PTLD or Lymphoma.

Bella had her monthly IVIG on Wednesday so we were in clinic from 10am-1pm. Her body still continues to make its own IGG very well and so this monthly IVIG is just a boost for Bella that her Immunologist wants her to have. The more protection the better. They want it to continue for a year from when they started which will be November for Bella. And if it ends in a winter month, they continue the IVIG through the winter. So that answers our question about Bella keeping her Central Line (CVC) for when we go to Swift Current. So we continue to pray her CVC stays clean, no infection, no blockage and continues to remain useable. She'll continue to have blood work and IVIG for awhile yet so this CVC prevents her from any pokes. 

To Build Or Not To Build... A Bear.

Not...

We were very excited to take Bella to Build A Bear but her docs called me the day before and said,"no."  I had changed her clinic time at the hospital, so we could go... thats what alerted them to call me and say not to take her. They are still quite strict with her isolation at this point and don't want her inside in any public places. The RMH (Ronald McDonal House) had planned a trip to Build ABear specifically for immune suppressed children. They planned so we could be there before the mall even opened. But Bella's docs still said no because we just are not allowed to have Bella around other children or places we just have no control over. And they are right. As cautious as I am with Bella, I can't control  who other kids have been around, or what. I can't always spot clean every surface that Bella may touch, or I may touch and then touch her. Viruses do live on surfaces. It's just still too risky. I guess it just gets me down because even though she's doing so well it's a "slap in the face" reminder that I can't let her experience what every other healthy kid gets too. It makes me break down knowing she doesn't get a summer at the lake, she doesn't get to play with her cousins, make friends or get her face painted at a fair and ride a pony. I know a lot have said, "Well she's too young to realize." Well, having grown up in a hospital room and on isolation that may be... But I realize and it affects me. 

Eating and Drinking

Bella continues to progress with her eating. She is eating a great breakfast every morning and getting better at eating more during supper. It's just that drinking part she is still working on. As frustrated as I get I need to know, it'll come. It confuses me because she knows how to drink, she has drank before but doesn't want to now. But with eating... It's a new skill, she had to learn and now has taken off wonderfully. To me, it's like she prefers the feeling of eating over drinking. I could be totally wrong. I just wish she could remember how fast a nice bottle of yummy formula can make her feel. And now that she is tolerating 75% mix of her new yummy formula, she could drink this yummy vanilla flavoured (yes I tried it, it's good) formula on its own and like it! 

But.. She pushes it away and says, "done," with the cutest little tone in her voice.  I've taken my hubbies advice this week and put the sippy cup down and away. I'm not going to push it on her and make her hate it. Even though I've tried multiple sippy cups, regular cups and even the bottle...I'm giving her a break from it all. I have her SLP/OT coming to help us next week with this drinking issue and we'll go from there. 

We enjoyed a Beautiful day last Friday at the Shaw Charity Classic. This event supports the Ronald McDonald House (RMH) in a huge way. We were so happy to be able to go as a family currently from the House. Last year Lyle and I enjoyed the "inside the ropes" experience with the golf pros and this year the RMH made that possible for my dad! 

Calgary Zoo - Prehistoric Park -

Bella's  Day +138

Don't Forget:

- Educate Yourself. Please read this excellent article on the immune system. It is an easy read that reviews many terms I have used. http://primaryimmune.org/about-primary-immunodeficiencies/relevant-info/the-immune-system/ 

This is a good article as well that gives good detail about types of immune diseases including SCID:

http://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/

- More Hospital Mom Hacks helpful YouTube videos coming this week!

- Be a Bone Marrow Donor!

- Give Blood

- Keep a sense of humour