1st Chimerism Test Result!

Sweetpea all dressed up to share the good news! 

Her first Chimerism (How much of her is donor cells) test came back today and her Tcells are 100% donor!! This is the best possible news for this blood test. This means the donor cells have taken over here. If you remember my prior explanations, Bella did not have an immune system because her Tcells and Bcells did not work. This test shows the donor cells have taken over 100%! Her docs have reminded us how rare Bella's case is, she is super rare. Out of the 4 SCID patients or any other child who has had a BMT, (they all are different)... Bella case is the most unique. So based on what they do know they would be happy if her test results were above 30%... so 100% is the BEST possible outcome. Thank you Jesus! This is amazing.

The next test (a month from now) they will look at her Tcells again as well as her B cells. The % that is donor is important, but their function is just as important. The bcells and Tcells have to talk to each other and function together. Bella's Tcells may be all donor, her bcells may not be, and that's ok as long as they both function together. Her Bcells could come back as all donor as well, or a mix of her and donor... They just have to function with the Tcells. We will find that info out with the next Chimerism blood test. 

I have said it is amazing that Bella has come through the chemo and the transplant the way she has. Minus the sepsis attacks prior to BMT, she never got the severe Mucocotis sores in her mouth and she never got the severe bum breakdown that the chemo meds can cause. However, her doc did say Bella is the sickest SCID patient he's seen go through this process. (Out of only 20 SCID related cases he has personally handled)  He believes her hard times post BMT are most likely do to her fluid imbalance, that has proven tricky to handle. This can be a common issue with babies regardless, but with Bella's particular case...she's the worst he's seen. But! She has pulled through like a champ and they are so happy with how she is doing now, they are very pleased.

Tea Party

Timeframes and Isolation 

From the beginning they have told us expect to be in hospital for 6-9 months post BMT. So at the earliest we could be home with Bella by September 2015. This timeline is based a lot on the timing it takes for Bella to come off of all the meds and they also must monitor her for specific amounts of time after each med has been discontinued. Keep in mind she is a SCID patient not a cancer patient. They have done many BMTs with cancer patients... Four, for SCID patients. This is about protecting her new immune system, and not exposing her to any risks. The BMT for her is meant to only be done and needed once! We do not want her going through this process again because we risked and compromised her system too early. 

We must be on strict isolation post BMT for roughly 3 months, until Day 100. This means she's not allowed outside her room, at all until the beginning of July at the earliest. That's why when we accidentally got outside last week, it was a big no no. This 100 day room isolation is because they need to make sure Bella's cell function is adequate before it is safe for her to even risk going out of her hospital room. So hopefully by July we will see they begin to allow her "outside passes." They can only do her cell function tests once per month. To see adequate cell function takes at least 3 blood tests, so 3 months. 

Bella wearing her BMT necklace. 

This is her necklace that has the bone that matches to her donor's necklace. We haven't gotten word of anything about our donor yet. I may ask again tomorrow, but still haven't heard if she  received her card and gift yet. It didn't get sent back to us either, so looks like One Match approved our letter and gift for the donor. 

We stopped in the Swift Current hospital when I was home for the weekend and dropped this card off to the nurses on the maternity ward. I wrote a note on the back for them aswell. Since our short stay in October in the ICU there, I haven't had a chance to update them. Living in hospital for over a year, I see how much the nurses that have cared for Bella, need updates like this. I have also sent emails to Bella's nurses in Saskatoon, RUH. 

When I dropped off the card I was happy to hear the one nurse say she was my nurse when I went into labour. The Swift Current team does not air lift emergency newborn cases often, so I can understand how much of a heartbreaking day that was for them aswell. Bella's story, blog and updates are serving a great purpose. I'm happy and humbled when I hear how much people check the blog and appreciate the updates. 

Post BMT Day +29 Lots of Updates

Day +29

Just a bundle of cuteness to start off this post. 

Things have been going so well for Bella that I have weeks to update everyone on! I think I may resort to jot notes for many of the medical updates. Refer to my April 9th blog post for Engraftment details. 

We have been celebrating the Flames! This hasn't been hard seeing as both Bella and the Flames like the Cinderella story. (If you understand what this all means for The Calgary Flames, you'll understand that Cinderella comment). 

The RMH staff gave Bella a jersey, tshirt and a signed puck! RMH staff sent the Flames Foundation a few pics of Bella in her game gear as well. 

Medical Updates/Short and Sweet:

No needle pokes since her new Broviak line on March 24th! 

No pukes since end of February!

Bella is off of a lot of meds now that she's engrafted. She's off antibiotics. Down to only 2 iv meds in a day. The only 2 iv meds she is currently on are used to prevent GVHD which she does not have! Yay!  

So this means more time off lines, less time attached to the iv pole.

Her Counts/Numbers are staying consistently up. Specifically her AGC is consistently above 1000 and that's exactly what they want to see.

We are still waiting for her Chimerisims count. (How much of her is donor cells)

Her platlets are rising on their own. This means her marrow is recovering on its own. 

She is still positive for:Entero/Rhino, Sapo/Roto viruses. She shows these just as a carrier type, these viruses are not effecting her and she shows no symptoms but they are not totally gone out of her system so they show up on the test. So she is still shedding them as her new immune system becomes stronger. The new cells will eventually recognize the viruses and destroy them. 

Her risk of VOD (liver complications) is gone after 6 wks. So we are 2 wks away from that time line. She currently shows no symptoms for that either.

Her RSV shots are done. 

Currently off of Oxygen. She has needed it off and on. The docs have set a stat parameter of 92. She can not dip below that or they put the O2 prongs back on. She really doesn't need much at times, about .25 of a Litre. Using it therapeutically has shown to ease her work of breathing and lower her heart rate when she may be in pain or grunting from possible pain. 

We weaned her off Morphine and she's been off both for just over a week now. 

How has Bella been?

I would say the last 2 weeks she has been much more like her usual self. The steroid meds and cyclosporine med made her very moody, irritable and not herself. I was so sad about this daily and needed constant reminders that these meds can do this to her. This is another factor from living in hospital that makes everything so much harder. I have had a real hard time with this when it happens. I  get so upset and worried when I can't tell if it's her teeth hurting her or her head ache'n from meds or the fact that her little body has been through so much. And she can't tell me. All I want is her to be that little girl playing goofy face games, smiling at everyone, happy like always. Then the next minute I don't know if her heart rate reflects serious pain like when she went through sepsis...or if she's just mad. To have numbers on a screen that could mean something serious or really just a normal one year old attitude, is so draining and confusing and can bring you from instant heart attack fear, to, "oh... It was just 'this' and that's normal."

 Rollercoaster. 

A couple of times in the past week I've found myself just in a breakdown, quietly sobbing... crying tears of relief. A few times I've just been holding her, rocking her to sleep for her nap and just balling because moments earlier her heart rate was 180, she's crying, and I couldn't immidietly figure out what's wrong and all I have to go off of is instant recall to her sepsis attack when she was crying and her heart rate was above 180. 

I do my best to not jump to that conclusion but the horror is still so fresh, she calms... As I pick her up, give her her soother she calms some more. Oh... She was tired. And the release of waterworks flood my cheeks because she was just tired. I slowly regain my breath, see her calm in my arms and remind myself... Her heart rate was not escalating because of fever or sepsis... She was just tired and upset. Huge exhale. 

After being through her BMT, she is back to more like herself, especially this week. They are weaning her steroid med and her cyclo med is no longer iv, it's given through her gtube now. I have our pharmasist review Bella's meds with me when ever I need, and they check with me daily. At one point around transplant she was up to 18 different meds, and many have changed since. She's only down to about 12 now and most are PRN (given if needed). 

When I got back from my weekend in Swift Current, Bella was so cuddly and wrapped her arms around my neck. Best feelig ever. She is more active now and getting more of her energy back, but still super cuddly, which I love. She's a snuggly noodle still and i'm eating it up. Especially when I walk in her room and she quickly requests me by saying, "Up Momma, please." And she reaches her arms up. And yes, she is putting words together. At 16 months old I'm blown away too. She's putting more words, like 2-3 words together. She'll request specific books now, like her book about dogs. She'll reach for it, make a dog panting sound and say, "book." Or her "Moo book."

Her energy is slowly coming back in a physical sense. She was crawling all over the place and couch surfing to get around her crib. She would stand stand and do squats and dance on her feet. She would show off her standing skills by letting go of the rail and balancing with excitement when we would say, "No hands!" She would kick her feet up and spin around in her jumper. 

She's not back to any of that yet after transplant. She gets pretty upset when physio works with her or if I try to get her back in the crawling position. It's all still a little stressful on her body. But it'll come. I'm fine with her being my little cuddly noodle for a little longer. She doesn't push away, and cuddles a lot. 

Day +26: Showing daddy that cartoons are on. Haha I have some cards made up of family and us,of course, for when we are away. 

Feeds

How she is being fed and the way the doctors are so specific about her fluid intake has a lot to do with her low energy level aswell. She has been losing weight (not huge amounts) but still hanging around her baseline weight. They have also sacrificed her formula feeds greatly to manage her fluids. Before BMT she was getting 140ml of formula in an hour and around 850ml per day. Since BMT she is on continuous feeds of 24ml an hour. At some points she was at 5ml an hour of formula. Today she is at 28ml an hour and that's as high as they want to go for now. Just strictly to manage her fluids and other med related issues. But hey! They never had to use TPN (iv nutrition) for her ever. It's good knowing we could always have more options if needed, but she never needed it, so that's great. She'll stay at 28ml/hr for a bit yet, and they'll change this slowly as she gets further away from complication risks, and less meds. 

Oopsy, That Was A Big No No.

Day +27

So we escaped outside and we weren't supposed to. Oopsy. We broke free! 

Not a huge deal but the doctor on call for that day got a big slap on the hand from Bella's BMT doc. You see, there are 3 Isabella's on Unit 1 right now, so apparently name and order mix ups happen. One of the Isabella's is allowed outside...not us. We are on strict isolation until ALL of Bella's counts are stable and some they don't know about for 3 months post BMT. For many things they don't want to be too confident before Day +100. Oopsy. We were careful, but our doctor reminded us she is still only the 4th SCID patient ACH has seen. They want strict isolation protocol because they don't want to stretch the isolation boundaries so soon after BMT with having only trialed this experience with 3 other patients. 

Either way, Bella was not exposed to anyone and we had a fabulous 15min of sunshine by ourselves outside. She loved every second of course. But we won't be aloud to do that again for a while.

Cyclosporine med line and overdose incidents/What's been done?

April 9th I made a post about this. Since then the Primary Nursing that the unit manager put in place for Bella has been so so good for us. The consistency just elieviates so much stress and I haven't had to explain the same thing daily and exhaust myself that way. It's so relieving to have the same nurses consistently when daily changes with Bella are happening. They understand the reasons behind the changes and can see some issues resolved within the same time frame of the week they are with Bella. It's a world of difference to have Bella on Primary Nursing. 

Pharmacy has had 2 meetings with all their staff, and I have met with the manager aswell. They are no longer aloud to modify any work-sheets. They have a specific group making the new worksheet plan. The sheets are complete and in use. And they have the "human check" protocol in place for these new worksheets when drawing up meds, aswell. So a second set of eyes must do checks on the worksheets. 

Ok, this post is a long one. I'm going to stop here and let you all know I have exciting, good news for the next post!!! 

:) 

Home

Another winter day

Has come and gone away

In even Paris and Rome

And I wanna go home

Let me go home

As I pull into our front drive way I'm overwhelmed with a heavy weight of memories and the uplifting excitement of just being home. 

A greeting full of pure joy from my fur baby Jersey. 

Lyle was still at work so I had some time with Jersey to just step out of my car, walk around and breathe in what it felt like to be home. It was a beautiful calm Friday afternoon too. I didn't have any stress about Bella. Mom gave me great updates that made me feel so at ease even though I was quite far away from Bella. 

Walking all around the yard made me so happy knowing Bella is going to love growing up here. From isolation in a single hospital room, to our wide open acreage... It's going to blow her mind! I can't wait till she's buz'n all around here, that's all I could think about while walkn around. 

More love for my pooch, then I'll go inside. That's going to be harder. I know a lot of what I see is going to bring me right back to those heart-sinking days right before we had to bring Bella back to hospital. I didn't really want to go inside at first. 

Bella's Beads of Courage from Dec. 8th, 2013 - Sept. 8th, 2014. 

Bella's living room book stash in the window. I'd read to her in the mornings, with snuggles while I had my coffee. I just had to stare at them for a few minutes, thinking about all the fun things we did in the living room. The memories pulled me in with a strong numbing gaze. 

After that, I sort of just felt the need to go into each room in our house. I needed to see each room, like band aids on each limb I just needed to rip off really fast so it wouldn't hurt too much. 

So I found myself just standing at each door way. Jersey stood by my side for each room. Patiently waiting.

Bella's Room.

Even some of her outfits sparked flashbacks of certain days in Saskatoon hospital or the days I actually took her out in public. What a bittersweet risk that was.

It seemed as though much of what I thought of,standing in Bella's room, was all... "God, If we had only known." It hurt so much, a flood of pain just ripped through me. All I saw was all the dangerous mistakes we took with Bella, because we didn't know she had SCID. 

Every memory, even the fun and happy ones that came through my mind, were tainted with, "She wasn't supposed to be home yet, she wasn't fixed yet, she's was still in pain." 

I took a deep breath... Reminded myself: She's safe. She's better. She's fixed. It will all be ok now. Erase, erase, erase the pain... it's over. Next room.

Some tubby times had giggles and many had smiles. Too many were not easy to think about. Working around the ostomy, after that was gone, her horrible skin issues and ng struggles. I quickly tried to erase those and remind myself how beautiful her silky smooth skin is now. Baby smooth and not causing her pain.

Our basement. This was a good space, to finish settling in at home this weekend. We had some fun happy times downstairs in September. We rock'd some tunes, Bella would jump and play in the bouncer, amazed at whatever show was on the massive screen. Lyle and I would be cleaning or painting... finally  completing more basement projects for future family time to be spent down there. Like epic movie nights! 

Finally, just before Lyle got home I sat myself down and took a big deep breath. All the 'bad memory' band-aids were pulled off and healing took place. Breathe in fresh air and new beginnings, breathe

out recent triggers of a painful year. Breathe in what joy and fun there will be, breathe out the weight of waiting. 

Friday, Saturday and Sunday were so great, and so relaxing. I was taken back at the amount of work Lyle put into our homestead. (Ya, we use that word... Like a couple from 1919, 'homestead.') haha

The work he does on top of regular work, is so much, but he loves it. He's building up our beautiful home, so perfectly... It'll be a sweet sight when Bella and I get back there together. All thanks to my hard working hubby. 

I'm just too far

From where you are

I wana come home

Let me go home

I've had my run

Baby I'm done

I gotta go home

Let me go home

It'll all be alright

I'll be home tonight 

I'm coming back home. 

21 spoonfuls = 1 miracle. She Ate!

I am still in shock and crying happy, hope filled tears. Bella ate today. She didn't just practice tasting food, she ate soup and wanted more. Many of you may not quite understand this because eating and drinking for most is so simple. The ability can be taken for granted so easily and if you throw one wrench in the situation, it becomes a huge problem. Eating, breathing, touch... our five senses, walking, talking, are all so simple but to me, I have realized now it is like a miracle when a human has all of those working for them. Take one away or hinder one, and life can be so much more hard on that person. Something that comes so easily for most humans has been a constant battle or obstical for Bella since her first surgery. 

Day +18

Bella was never allowed a chance to eat normally. Too many bowel obstructions, surgeries and complications destroyed her chance,no matter how hard we tried. 

We never stopped trying though, and supporting her but she has had to overcome and push through many obsticales just to eat and drink. 

I cried today as we attempted another "Food Play/ Tasting" time because my daughter didn't just taste and hold food... She ate and wanted more! If you could understand the agonizing details of what it has taken to get to this today... You would understand how much of a mirical this truely is.

Our baby girl has had to fight to keep food down after fighting to even be able to eat it. Her first 8 months of life were a struggle with only being fed by TPN through her iv, and NG sump down her nose/throat to suck out stomach contents because she had a blockage while waiting for surgery. This hard, plastic sump tube had to be reinserted down her throat multiple times. Then she had the ng feeding tube when the ng sump tube could finally come out. She battled many days and nights being NPO for many reasons. NPO is when she is not allowed anything to eat or drink. Bella also fought to eat because she fought multiple daily emisis episodes because of her bowel issues and bowel motility issues that became a problem from all the surgeries. Many days I have sobed and been scared wondering if my baby girl will even care about hunger any more.  She's been given a hard road from all this I have seen her days with out food become less and less of a problem for her. That's terrifying. She's just a baby and already fed up, leaving her with no desire to eat. She has been "fine" with not eating because of all the horrific situations she has been through. 

It's gotten to a point where (well even by month 2 of being in hospital) I cry when I see other children eating or other babies being able to drink from a bottle. I break down and cry. I still can not hold back tears when I see other children eating so easily. This weighs heavy on me because what Bella has gone through.  

   But her hard work is paying off! She ate today! I'm full of pure joy. I know she'll eat on her own some day, I know she can do it.

Remember back in Sept. 2014 when I was so happy Bella had her ng tube out of her nose and was wanting formula? Thinking about those days is so devistating  for me now. Not knowing she had SCID and the risk we took feeding her the way we did, when she was still puking a lot, and then she aspirated and got lung infection. The guilt I feel from those days puts an unbearable weight on my chest, when I think about it, I can't breathe.

I know... Most tell me, "Kyla, you didn't know."  Ya, but that doesn't erase the pain I feel from the risk we unknowingly took, trying to feed her the way we did. We were just so happy she was wanting formula, at that point she still wasn't eating food. It was detrimental to feed her enough so she had the nutrition she needed. I didn't want to have to put that ng down her throat ever again. It was devastating. 

Bella tried so so hard to want to eat. She faught so hard and I don't blame her for only being able to handle so much. Months of a tube down her throat, puking, thrush in her mouth when we didn't even know, underlying SCID being the reason why she dealt with these infections for so long. It tears me apart thinking about what she's had to go through just to eat, just to try to drink. So the doctors weren't suprised she developed an oral aversion and would not want any bottle, food or hand near her face. She even stopped sucking her soother for a while. 

Her history is proof why today's hunger for tomato soup is such a miracle.

We were never giving up on her of course. I've always told myself, my baby girl is going to eat someday, she'll understand what hunger is and be able to eat someday. Until then, I'll do everything I can to help her.

When she was fighting infection in October and when we found out she had SCID and needed a BMT in Novemeber, we were told, "No Oral Feeding." 

Can you imagine being told you can not feed your child? After all she had been through, after a year, and I still couldn't feed my own child. The risk of teaching her to swallow food, was too great because we could NOT risk aspiration that could lead to infection, before transplant.

So the Gtube came Dec. 1st,2014. That was part of her surgery, a tube in her stomach to feed her that way, and not by mouth. 

Thank God the ng tube was finally out of her nose/throat. That was horrible and no child should need to be held down to have that inserted multiple times. But no one could foretell the future, so sadly she had the ng for a year. Otherwise, the Gtube would of came in sooner. But we always thought we were going home after every surgery. After every surgery we thought the ng was temporary until she could eat again.  Little did we know. 

So now we are in April 2015! It has been 16 months of helping our daughter learn to eat. 16 months of daily trials with food, bottles/ now sippy cups. Trying to lesson her aversion from the pain she had to go through in her first year of life. Just... to... eat.

I know the pain we've been feeling will be nothing compared to the joy that is coming. The joy that came today when Bella took 21 spoonfuls of tomato soup!!!

The most she has even tried before was 4, 4 at most! 21 blows that away! I started  counting after 5 spoonfuls because I was so excited. Then we dipped her celery in the soup and her crackers in the soup, and she sucked on those and loved that too! I feel like I could type for hours trying to explain what this means to me.

I have been so scared, so so scared that my baby girl would not eat or could not eat. I've been diligent in faith, working with her day after day exposing her to as many different tastes and foods and utensils as I can, to battle any possible aversions before they pop up. 

The SLP and specialists here have helped give me the tools to get Bella as much food exposure as possible with the least amount of risk, given her diagnosis and what we can't risk because she can't fight infection. 

Today was a victory. And I look forward to many more. I know she'll eat again. I have faith, one day she'll eat and drink on her own. One day she will understand hunger and thrive. One day her Gtube will come out and she'll eat on her own.

I pray before every meal not just to thank God for the food but for the strength He gives me to want to eat... when my daughter can't, and for the faith that someday, she will. 

Day +17

Bella is now off of morphine and gaining more of her energy back! She hasn't been up for being in her jumper since before chemo.

"Fix stupid now or Hulk smash!"

It has been over a year, and we are still in hospital. As a first time mom, my life has been in hospital... I've been living in a hospital. Did I mention hospital? 

Ugh... I honestly could write a novel about hundreds of scenarios involving medical errors involving Bella. Computer, human, pharmacy, nurse, doctor, resident, cleaning staff, lab staff... Errors throughout. And all at the cost of our tough little bug having to endure pain. 

It's not fair.

Over and over I think about the pain from mistakes and errors that hurt Bella, could of been a thousand times less if Saskatchewan had the SCID screenings program. She would have been screened, and immediately sent to a qualified center to start the donor search, and most likely do the bowel surgery she needed right, first time... Not 5 times. This needs to happen some way, some how. Most of my energy is taken up right now, but I know I need to put some ounce of what ever time and energy I have left to try and get this issue looked at. Any support in this area, we will gladly accept. I want so badly for Bella's story to save newborns lives from this day on. We have to make this happen, at least for our province and hopefully more provinces in our country. 

Day +12

Living in a hospital for over a year I have seen too many medical errors. It's torture when all these mistakes happen to your child. I exhaust myself trying to prevent, prevent, prevent! And we are still let down.

Recently Bella has had horrible errors happen and thankfully she's ok. Ironically it's been with one med, Cyclosporn. 

1st issue: When the med was started iv some nurses were still giving it to her orally and I had to correct them. 2nd issue: the nurse putting this med in the wrong iv line. (Which I mentioned in a recent blog post) and 3rd: They recently overdosed Bella with this med not just once but 4x in a row. The last 2 incidents happened a day apart. Before these happened I had many many issues and medical errors that I tried to get fixed. I haven't slept because of the mistakes that have happened to Bella, I've repeatedly tried to solve these repeated mistakes... And then she gets overdosed!?!  I guess pharmacy was the only ones that hadn't made an error yet with Bella so they must of thought, "Oh! Guess it's our turn." Gaaaawd. 

I know many of you probably still have your jaws on the floor. Yes, Bella was overdosed. It is serious. That is what I am dealing with this week. 

The good news, Bella's system uses this med very well so even though the med didn't reach a fatal level for her... It could have, any overdose has that potential. And the pharmacy staff that made the calculation error is in crap. Also, this is all taken to the provincial level. 

The error was made when the pharmasicist took it upon themselves to make up a new recipe for this med in order to use less of it and not waste because Bella is currently the only patient in all of ACH on this iv med. They calculated the recipe wrong, they should of never changed it. (Waste or no waste.) Essentially they gave her the full concentrated med, not diluted which was the overdose. 

Because this med is made in pharmacy, our nurses are unable to catch the error because it comes up to the unit looking exactly the same as always, same label and all. 

Any micro grain of trust I have rebuilt with medical staff in a hospital, that I have had to rebuild and rebuild after repeated mistakes is now fully blown out of the water. It's gone. You think I wasn't sleeping before this... Just buy me coffee. 

So what's being done? Well... Oh you are probably all wondering about the physical assault charges I have laid on me now? No, I didn't lose it on anyone. I bit my toungue and handled all this calmly. I've learned (key word there... learned, meaning I've already done the 'losing it on you, call the cops' response) that reacting smart, gets a better response. 

They also made a huge mistake and know that if I did decide to smash all their heads together and go Hulk, they deserve it. Our social worker mentioned to me yesterday that her and Bella's doc had a conversation about my response. She said he has a lot of respect for me, given my reaction. 

They are just lucky Bella's ok. If she was hurt... I would go Hulk. I can only deal with repeated mistakes for so long... Actually at this point... you make one mistake that involves Bella... I'm on you like white on rice and I'm not nice. 

So, I have met with the unit manager twice and we have agreed on next step action plans. I also meet with the pharmacy manager tomorw. All the paper work to have this overdose issue dealt with has gone to all the people it needs to, the provincial level, etc. On the unit, Bella has also been now put on Primary Nursing. This is a plan that basically calls for Bella to have a list of primary nurses, and those nurses don't change. They will be the only ones working with Bella from this  day on. The conversion from the manager to the nurses today, probably went something like this, 

  "So, we've been screwing up lately and just to avoid any lawsuits, Bella's goin primary... Everyone good?  Good." 

Day +15

Bella's Officially Engrafted!

As of yesterday, April 8th 2015, Bella has officially engrafted. The new donor cells are set'n up shop and doing their job! This means her AGC number has been above 500 for 3 consecutive days. I'll share the calendar/counts pics to help and hopefully explain this in a way that's easy to comprehend. 

The big picture is Bella was born with no immune system, and what little she had didn't work right (SCID). In part, she needed a BMT, her cure. Those new donor cells are transfused into her and essentially take over, making her a new immune system that works! Now the docs watch her counts so that the new cells have the perfect chance to take over. Not too fast or too slow, but just right, to prevent rejection and complications aswell. Bella's counts have been right on track and even a tad early. This is great news and as long as her counts stay up, it'll be good. They warn us that counts can go up n down before they just stay up. But Bella's haven't dipped, and been consistently on the up which is good too. This also means, the more she progresses the more meds she can come off of as her donor cells take over and essentially tell the doctors, "Hey, we got this." 

Day +11

So here's a simplified way to understand her counts. (Numbers on her calendar.)

Today is +15, April 9th

WBC is White blood cell count. This is basically our immune system in its entirety. There are many types of white blood cells (AGC aka: Neutrophils are one of them) and WBC is a count of all of them together, represents them all, your immune system. A normal persons immune system WBC # is at a range above 7. Between 7-11 I believe.  Bella is currently at 4.6!

AGCs are Bella's Neutrophils. These are the white blood cells that fight bacteria. 

These have different stages of levels but normal range is above 1500, which Bella is now! 

HBC is her red blood cells and PLT are her platlets. The docs monitor these too. For example her cut off is 80 for HBC. So she'll receive blood if that number dips. And it can dip for a few reasons. For example they draw blood from Bella everyday (which makes HBC # go down) and they draw more blood if she spikes a fever to check cultures.(she has had on n off engrafting fevers) So they have drawn a lot of blood from Bella lately and she received blood today. 

Chimerisms: These are what they look at to see the 'take over' of donor cells in Bella's system. So eventually we'll want to see that Bella is 100% donor. They take their first look at these on day +21. 

Day +14 Pics

Playing Bingo!

A cow says,"Moooo." A puppy says, "hhha, hhhaa." (panting sounds for puppy.)

Our wonderful friend Becky Warnke found this perfect shirt for Bella. Her signature quote. She still gets wonderful comments from eveyone about the poster that I put on her door, that has the same quote. (Thank you for that poster print Chantelle D.) 

I take notes everyday about what we discuss in rounds with her doctors, questions I don't want to forget, etc. Since I use this note book everyday I figured I'd write some good reminders on the front.

April 4th

My sweet hubby took me out for some relaxing Easter sips. 

Our Donor, Our Hero.

We recently wanted to send a Thank You to Bella's bone marrow donor in some way. I found it hard to think of a way to thank this girl we don't know, who gave so much for our little Bella. I just kept feeling like any way to thank her was too small, not enough. All I could think of is how much she is a 'hero' to us, a hero to Bella. 

Lyle came up with a beautiful idea and here it is: 

We found 2 beautiful silver necklace pendants and had them engraved. One for Bella and the other for her donor. They are connected by one bone. Half on Bella's and half on the donor's. Inside the donor's is the date of when she had the procedure to have her marrow drawn. And inside Bella's half bone, is the date of her transplant. 

On the other side of the donor's pendant reads, "Our Hero."

We also wrote a letter in the card and had them mailed to the donor on Wed. April 1st. Bella has hers in her room. I'll have to get a picture of her wearing her necklace soon. It was funny to note that our BMT nurse Moira pointed out she'll have to mail the necklace in a little baggy and we can't send it in the People's box because the box reads, "Canada's Diamond Store." And they can not give the information that we are from Canada. In the letter we also had to change our wording so that no specific information was given because that would go against OneMatch's rules. For example we had to change "our daughter" to "our child." 

I often think, "What else would I want to know if I was a bone marrow donor?" Well, I would want to know all the guesses the recipient and their family had about me. They make us wait so long to meet, so you are constantly wondering where are they from, what do they do, how old are they, etc. 

My very first guess about Bella's donor was she may be from France or Canada. 25 years old. A Lawyer, Doctor, medical professional or a student. Lyles guess was: From Scottland, 28y old and a mom.

For now we can send the donor letters that OneMatch checks strictly. But I would actually like to propose another idea to everyone. Something that we would have to maybe wait on giving to the donor, but that I think would still mean a lot to this girl down the road. 

So if any of you are interested please write a letter to Bella's bone marrow donor and send it to me. I'd like to keep them as keepsakes for Bella and also a gift to the donor, for when we can actually meet her. I think it would mean a lot to her to not only know what she did for Bella means so much to us but to Bella's extended family and friends aswell. If you are interested in doing this for Bella's donor please email me or mail letters to the Ronald McDonald house. My contact info is on the blog's home page bar. And add your guesses about the donor! I think that would be so fun. Take a guess on where she is from, (continent, country, province, state, city) age, and maybe what she does.

If you would like to send a thank you letter to our donor now, it may be more tricky but it's possible. You just have to be very careful with your wording, etc.

Updates on Bella: 

Today is +10 and we had a great Easter visit with Grandma Heather and Grandpa Wagner yesterday and today. 

Bella playing with her soft lil Easter bunny.  Bella also received some gifts from Grandma Davis (my mom Diana) and Uncle Ken and Aunty Beccy, and cousins Alexus and Lincoln. Thank you guys!

Day +9:

Yesterday I had a teary moment as I noticed Bella's beautiful hair come out in my hands. Yes, I was a blubbering mess. The chemo is still having the effect it's supposed to and this is part of it, but we stayed strong knowing it will grow back. And really, she's beautiful with or without hair. Doesn't matter either way, she's going to be ok.

Real real aweosme good news:

If you read one of my recent facebook posts you would notice my message of anger after I noticed that a nurse put a med through the wrong iv line in Bella's Broviak double lumen. (Has a blue and a yellow line) This was a med that they warned me about in the beginning because it sticks to the iv line and stays in it for a long time so they need the other lumen clear to draw blood and get precise levels. If a nurse ever got this wrong that would mean Bella being poked daily for months to get precise levels. 

Long story short, I caught the mistake in time, they tested the blood from the line yesterday morning and compared it, and it is very accurate with recent levels, so they can trust her line! This means NO POKES!!! Thank God!  The doctors noted this as being a very very close call and they are relieved it didn't effect her iv line as badly as they expected. 

Many 'Thank You's' & Updates.

First, Lyle and I want to say a huge 'Thank You' to everyone that continues to support us through Bella's GoFundMe site. We see your donations and comments and we just can't thank you all enough. It's means the world to us and it helps in so many ways. I wouldn't be able to fit the list of all the ways, on this blog. So Thank You very very much. It's quite a long haul with the time line the doctors gave us and many people ask us, "Why do you have to be there so long?" And it's not just being here for months after Bella's transplant, but the time she will still be in isolation for, the time we are away from home, our family, our friends, our dog. With SCID patients the time frame on isolation and in hospital is different from cancer patients. We know chemo and BMT do the same for each, they wipe out the patients entire immune system. (In Bella's case, the very little immune system she had that didn't work). But SCID patients do not have an immune system to fall back on if something were to go wrong or not work. Cancer patients original immune system would regrow. The isolation and time in hospital is protection for these kids and Bella, to give her the best possible chance at building that immune system that she desperately needs, grafting, and finally being able to get strong enough to fight the common cold, flu, etcetra when she's older... To live a normal life outside these walls. 

Day +4 (four days post transplant)

Still a big snuggle bug.

Bella enjoying her morning read through the Calgary Herald. 

Day +5

Bella has still been quite up and down with her moods. It's been hard to explain but she is progressing well and even a bit better than the docs expected. She has not got mucositis in her mouth (which is extremely painful) and no bum breakdown (which is also very painful) from the chemo meds. 

It's hard to see her not herself right now. She has become really sensative, and tired, moody and basically a little cuddle lump. It's hard going from the little girl that all the doctors and nurses talk about as being always happy. She would be quite a ham when you enter the room, stranger or not, mask or no mask...she would smile at you.

Now it's, "Don't touch me!" And we don't blame her. But it's still hard to see her so exhausted, tired and upset. 

Day +7 Grumpy Guss

Since yesterday we started Bella on a morphine drip. The Pain Control team comes to see us everyday to discuss different ways of helping Bella through any pain she may have through this process. It's quite heart breaking because she's still a baby and can't tell us where or why it hurts. 

The docs do know this regiment quite well so they know what to expect from a patient on certain days post BMT. They call it "Grafting Syndrome." So the effects from the meds and the whole process that her body has to endure, start to show between Day +7 to Day +20. 

It's good because it's something the body does when the new cells are taking over and grafting. It's hard because it's exhausting and painful for Bella.

I colored Bella some pics of her favorite animals to cheer her up.

So Bella's first official animal that she loves, can say their sound, and pic them out of any book or toy drawer is... A cow.  Second to the cow, she loves: Sheep, bears and dogs. During one of her cartoons yesterday Lyle and I were amazed to find her looking at the tv saying, "Baaa Baa," because there was a segment with a sheep bouncing around. I have also taught her to say, "iPad!" It's pretty cool. We have a cover on it so it actually opens like a book. So for the longest time she was calling it a book. (She has lots of games on it that she plays). Me being "type A" was annoyed by this and corrected her each time saying,"No hunny, this is an iPad." Within a couple days... she now requests, "iPad."  Lyles not sure if he's happy about this yet, or not. Haha 

I want to do anything right now to keep her spirit up and keep her happy. And if that means a little more cartoons and iPad in a day, I'm ok with that.