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. 

Day +2 Post BMT

Bella has been doing so well after her transplant. The doctors are very pleased with how everything is going for her. They have been doing daily blood work for all the checks they need on Bella. This will continue for a little while. They have necessary blood work checks, but don't want to take so much blood that they have to give her blood, for that purpose. For now they'll continue on as is. 

It's expected that Bella feel quite tired and a bit fussy, but we have seen a rare smile and giggle here and there. Especially when her favorite cartoon comes on. (Toopy and Binoo)

I caught this big smile because I knew her cartoon was coming up. 

The chemo is still doing its job in terms of wiping her cell count clean as to make sure the new donor cells can set up shop and graft, making her a new immune system. They say besides being tired a lot (which she is) she may still develop mouth sores and a real sore bum. But neither have happened so far, so that's good. :) Bella's naps have been pretty inconsistent ( before chemo she was like clockwork) but she has been sleeping through the whole night really well. She still has quite a bit of her blonde locks too. They are watching her counts daily and they know what to expect. They can fluctuate up and down a bit. But when her Nutrafills are at 500 for 3 days solid, that's when they are confident in saying she's grafted or "date of engraftment." 

Bella has been the most cuddly ever, in the last few days. She nuzzles in so so much and Lyle n I are eating it up. She's such a big cuddle bug lately. She opens up her arms, reaches out and requests "momma" or "dada."  Sadly for me, it's more dada requests. Haha

She is still super chatty and saying more words still. My favorite is when she drops something, or even when I drop something she says, "Uh Oh."  It's so freak'n cute how she says it. 

Our Childlife team made Bella this amazing calendar! If you know me, you'll know this is right up my alley. I love it!

Snuggle-bug

Transplant Day! Day Zero! March 25th, 2015.

Describing what this day means for Bella is easy with the way everything has come together. It is Spring, it is Easter, a time of re-birth and new life. Bella's grandma, Cheryl Thomson, couldn't have put it in better words. 

March 25th, 2015

Bella's BMT Birthday

Day Zero Transplant Day

A Day in Pictures:

One year ago today:

Having the Beads of Courage program for Bella has been so significant for journaling her life in hospital and will give her so much to look back on when she's older. Here's what was in her BOC journal exactly 1 year ago:

In RUH hospital. Saskatoon, Sk.

Bella was only on TPN, no formula feeds.

We did a stoma pouch change 

She was given some iron 

Put on isolation for showing signs of a cold or fever.

Still having bowel complications and 2 weeks away from her 3rd bowel surgery to remove more of her colon that was effected by Hirschprungs. 

On this day last year, a second pathologist report showed her Saskatoon surgeon that they had not removed enough of her colon and it was still causing a blockage.

2 Years Ago Today: March 25th, 2013.

I had just found out I was pregnant! And it was about a week before we told our parents.

Today

8:30am

9:30am

Getting dressed after morning bath.

Bella's surgery to put in the Broviak central line went very well! It is her 4th and the first one on the left side of her chest. They were able to take out the PIV in her arm and the one in her foot last night. So today she can wear her clothes again!

10am

10:30am

Bella is nap'n right now as we wait to go to Rounds with her team of doctors. Sadly rounds are delayed because her team had to go to the PICU for a worse off child. We will patiently wait. It's now 11:30am and we should have the meeting soon to find out exactly when Bella receives her donor cells.

11:45am Rounds Mtg

Ok! So, the donor's cells are still being worked on in the lab at Foothills Hospital. As soon as they are ready they will come over to ACH and Bella will receive them. So no actual time yet. The amount they got from the donor is more than adequate for Bella because she's only 6kg. So they may have to transfuse them into Bella twice today, 4hrs apart. They will also freeze the remaining cells. They can be stored for up to 30 years.

The Transplant Bead I selected for Bella.

A beautiful lighthouse. 

2pm

The team is still setting up. There will be Bella's main nurse (Jess) in the room for all of this for at least 3 hrs. Another nurse will use the computer and be in charge of Bella's vitals and reaction meds. A third nurse will audit and make sure all steps are followed in order. The rest of the team will be close by. Here we go!

Transplant Started! 

As you can see, Bella was quite excited.

The cells were transfused through Bella's iv at a rate of 12mL/hr. So the transplant was complete shortly after 6pm.

1hr into Transplant: 4pm

So Bella's transplant will be done in 2 parts. The main reason is because the donor's blood is not "compatible." Which just means donor's is B and Bella's is O. The other reason is because they can not overload her with fluids. So we will do this all over again tomorrow morning! But its ok cause everything has gone so well. At most, Bella had some quite high blood pressures but that can be expected. 

6:30pm

1st part of transplant complete. 

Bella did amazing today, we are so relieved that all went well. 

Onward, my strong, vibrant little lovebug... Onward and upward. :) 

The Week Before Transplant. Day -7 to Day -1

Today is titled Bella's Day of Rest, Day -1. It's quite fitting that I won a pretty pillow and blanket for her at bingo last night I suppose. On this restful day I have time to fill you all in on the last 7 days, before Transplant, which is tomorrow. 

This will be a long post.

Day -7: Wednesday, March 18th

This day was not a bad day but was a little harder than the first day of chemo. Bella had an odd episode after they started Ativan today. They may have run the rate too fast because she acted the opposite of what she should do after receiving Ativan. Looking back now we realize this episode was not a reaction to Ativan, it was the first fever episode in her series of Sepsis attacks that were about to get worse and worse. 

Day -6 Thursday

The chemo meds started showing a few effects including what I called "glowing hives." They would change from small to big and fade in and out sometimes covering all of her arms, legs and head.

This was quite a busy day but Bella still had a lot of playful moments where she seemed quite herself and well but was also very moody. 

Bella was put back on Oxygen because they didn't want her to have to work at breathing in any way. Later that night she spiked a fever and got the shakes. They thought this may be a reaction to one of the chemo meds at this time. 

Day -5 Friday

Things take a bad turn and the sepsis attacks begin. 

At midnight last night Bella also needed a blood transfusion. I believe this one was the 8th or 9th blood transfusion she's needed in her life so far. The STEP team (PICU team) got involved with her case so they could be ready for a transfer if it got to the point where her Unit 1 team could not handle all that she needed. It turned out Bella never needed to go to PICU (Thank God) but Unit 1 put Bella on 1-1 nursing. 

This pic is in the afternoon after Bella made it through a rough night and tiresome morning. 

Day -4 Saturday

 Later tonight at midnight the worst attack was yet to come. 

They were still trying to figure out what the main cause was at this point and what to do. They later realized it was Bella's Central IV in her chest (that had bacteria living in it because they love plastic) showering her heart with bugs everytime they used the line. So before they understood this and decided and realized this would stop if they stopped using the line... she came to have another attack because the line was used again. This attack was the worst and we almost lost her. 

We had to wait in agonizing pain and torture as Bella endured the worst Sepsis attack. 

These pics were taken early afternoon after Bella had a bad Sepsis attack at 9am, we were unaware the worst attack would still come at midnight tonight.

What hell looks like:

At the time of her worst attack (and by worst I just mean the longest) we litterally had to hold her, pray, and watch our baby go through pain hoping her heart would not give out at a rate of 230. 

You see, the only iv line in her, needed to give her the bolus of fluid to support her heart and to give her antibiotics to fight the bugs infecting her blood... was still in her for those purposes. So at the same time she needed it out she still needed it in. Causing the doctors to have no other option but to tell us to wait as we watch her go through an agonizing episode of sepsis attack. The battle was all up to her and the strength of her heart at that point.  As long as her heart didn't give out and she didn't DIE, we had to wait for the episode to be over, lock the iv line and prepare her for surgery to take out the iv line.  

Now that her IV line is out she must go through a needle poke in her hands, arms or heel for all blood work. They were able to get a PIV in her arm. Sepsis attacks were enough stress, and on top of that she has to go through multiple pokes daily for blood work, etc. She was poked 20 times in 2 days.

Day - 3 Sunday

This pic was before surgery. You'll see Bella in this type of shirt a lot, it's the hospital shirts. They are big enough to pull over the perf. Iv in her right arm and button up in the front. All of her regular button up pjs have sleeves that are too tight and skinny. Later after her surgery to get her chest iv out, she'll have a lot of "no pants party" pics because they put the second perf. Iv in her left foot. 

She's also feeling a lot better after they stopped using her line last night. She has also been NPO (no food/formula in tummy) for many hours. They do this before surgery. So by the time we are able to feed her again it will be about 12 hours without formula for her.

Surgery: 

Surgery happened at 10:30 am. There was worry that when removing the cuff of the Broviak line it could shower her with bacteria bugs again and she could have another sepsis attack in the OR, but that didn't happen. She needed a breathing tube during surgery, but did very well and came out of it just fine. She went on to have a good Sunday afternoon. There was one bump after surgery when we realized feedig her full feeds (105 mL of formula in 1 hour) was making her feel really crappy so we had to drain her tummy. After morphine and draining her tummy she felt way better. So the docs decided to leave her NPO until they figured what was best for feeding her. 

They later decided to just "bathe" her tummy for now with formula at a rate of 5mL per hour. 

Day -2 Monday

Last Day of Chemo

Today we found out Bella's bone marrow donor had her marrow drawn for Bella and it went very well and is on route to be processed and everything they need to do to it to have it ready to infuse into Bella on Wednesday. 

Bella was feeling very well last night and would of had a good night sleep if lab wouldn't of had to wake her up at 12am to poke her for blood work and then again at 6am to poke her again. 

This all finally brings us to today...

Day -1 Tuesday

A Day of Rest

Bella and her princess pillow that I won for her at bingo last night. Bella woke up happy after a restfull 13hr sleep with no interruptions. 

The iv in her arm and the iv in her foot are still both working very well. However they can't risk using these for BMT transfusion. So now that they know Bella's blood is clear, they are able to send Bella for surgery to put in a Broviak central line iv in her chest. She is in the OR for this right now as I finish this blog post. This is Bella's 4th Broviak line sewn into her chest, her 8th Surgery, 8th time being put under not including her Sepic Shock that had her in the PICU for 3 weeks last April.

Onward 

Now that Bella's chemo conditioning is done the chemo continues to work and do its job for days possibly weeks to come. It mainly continues to lower her counts so that her bone marrow is gone and makes it possible for the donor's marrow to set up shop, grow and give Bella new blood, new cells, a new working immune system and essentially... new life.

A Picture Is Worth 1000 Words

Day -8: A Day in Pictures

Today I chose to document the day in pictures as it is a special day in a sense that it is the first day Bella begins Chemo, first day solely under the BMT team of doctors, and the first day everything really starts to come together for her transplant. So it's a special day.

9:30am

Bella started the day just chilling and watching some of her favorite cartoons like Toopy and Binoo. This lounge position she gets herself in is pretty cute.

Lyle and I went to Rounds at 10am and walked into a room of 15 people, all of which are Bella's BMT team. They did an excellent job of explaining everything today and made us feel really comfortable moving forward.

11am

Morning Playtime with dad. You could have a ton of fun toys around Bella, but as soon as a medical item is around her, she's interested. Hence her chewing on her oxygen probe. 

12pm

Pre-nap Mommy snuggles and kisses.

1:45pm

On our way back to catch Bella waking up from her nap we stopped in the ACH cafeteria for the Irish dancing event.

2pm

Our little sweetpea is not quite up yet. She had a great nap today.

2:30pm

They now start preparing Bella for the first part of the chemo conditioning which is a needle she will get in her thigh of a med called Campath. She will get this needle tomorrow and Thursday as well. 30min prior they need to give her meds to help prevent certain things. Two of these meds are by the iv in her chest. So in the photo our nurse is cleaning her lines and doing a cap change on Bella's lines. She also received Tylonol through her Gtube.

2:40pm

Bella having an ECG for her heart check. She's had many of these before. It's common to have this done before a new med, in this case, before chemo conditioning. 

3pm

Me holding ice on Bella's thigh where she will receive the Campath needle poke. Because this med may cause a rash they can not use any freezing cream. So we can ice her thigh for a bit before the needle. Bella received this needle at 3:20pm today. 

3:30pm

A few minutes after her needle poke. Tears are all gone and she's feeling really good. Since 2pm our nurses have been in Bella's room constantly for everything, and now they stay and do more vitals more often and watch her close. They have to watch for any reaction and make sure no negative reaction occurs. Bella did great. No rash and not even a fever.

4:30pm

No pants party! Aaaand a t-shirt change. Bella had got a lil sick at 4pm and had one puke but was feeling fine after. Had to change her shirt after the spit up and just keep her pants off to watch her thigh to make sure no rash appeared. 

No more pukes after that and Bella had a great rest of the night. She was happy and played and fell asleep at 7pm. Her blood pressure cuff and oxygen probe will stay on her for the night as she sleeps because her nurse will be checking her vitals every 4 hours. She's been sleeping very well lately and even through diaper changes. So she should still have a great sleep and be well rested for another big day tomorw. 

It's Not Easy Being Green

Happy St.Patty's day everyone, Bella's Chemo begins today. 

I wanted to make this post yesterday, but it was a long, stressful day filled with many overpowering emotions. The toll it takes on the body, mind and spirit to prepare yourself for the worst but hope and pray for the best is unexplainable. 

I'm sure many of you have seen a boxing match in your day or most definetly a UFC fight. Remember what those matches look like? The absolute extreme physical shape those athletes are in, preparing themselves for a fight. The work they put in because they know 1 minute could exhaust them. They are supposed to be fighting each other but in some moments are so exhausted they are leaning on each other, almost holding each other up in a lock mode struggling to catch a second or two of rest so they can find the strength for the next punch, or energy to take one.  That there, most simply explains how both Lyle and I feel today.  Not against each other of course, but how we are fighting for our daughter, helping her through this, and finding the strength to get through it all ourselves.

Chemo's a bitch.

The doctors of course have to prepare us for the worst but almost share the information of how this week of chemo will go, in almost a "bipolar" sense. They say, oh don't worry too much some children tolerate these meds at home. Oh, but some babies get such severe mouth sores their airway swells and they need to be intubated. (Straight face emoji right there, if I could put one in)

Regardless, we are positive. Bella is going to do so so great. The Chemo is going to do its job for her in a sense that it will prepare her body to accept the donor cells on Day Zero. 

We got a 'final day before chemo' pic of Bella's long blonde locks! I shouldn't be too upset. Ya, chemo may make it all fall out, but she'll grow it all back after transplant. 

We have officially switched from the Blue team of doctors to the BMT team. The nurses on unit 1 are very happy and excited about this as well. It's like we are officially theirs. Blue team isn't coming in on their turf anymore. Haha It's like they can get in their "Unit 1 Protocol" groove when caring for Bella now.  Lyle and I will also have to attend Rounds every morning with Bella's BMT team. So every morning for about a half hour we all go over the care plan/meds/etc for Bella for that day.

Bella was able to get outside again, twice in the last week! So that makes it a total of 3 beautiful outings since Oct. 2014 for her. She has NOT be puking! It's been at least a week and she hasn't got sick once! It's been such a relief. They say the Roto virus is still showing up on her virus checks but it has prooved to be a mild case. We are just so happy the puking and harsh retching has stopped.

Ok, so... We are going to get on with this day. Bella will begin her chemo and move forward to gaining a new, working immune system! It's a cure, we have a cure for her. Some parents can not say that for their child. So tonight, if you choose to celebrate with some green beers or happy tears, cheers to Bella and the BMT that is her cure. The count down begins. 

Entero/Rhino Bye Bye-Oh!

It's GONE! It's finally gone. Bella's nose swab tests results showed she is finally free of Entero/Rhino virus. The tests were confirmed negative today. 

It only took 7 months... 7. 

Seven months for Bella to clear the common cold. To put this in perspective, the average 1 year old will get 8-10 colds in that first year of life. Get it and get over it. But in Bella's SCID case, that respiratory virus that somehow got into Bella's air space back in Sepetember/Oct. was life threatening for her. Can you imagine... Catching a cold and having it affect you for 7 months. Bella's lungs still have healing to do but they are strong, fighting lungs. And like Bella, though they may be little, they are fierce. 

If it wasn't for the Roto virus that mysteriously popped up in her system, Bella would be going into her transplant virus free. However, having the Entero/Rhino virus gone is the better of the two to have gone. That one deals with the airway, where as the Roto is gut/tummy stuff. Also, Bella's Roto virus is a mild form. With the way she is presenting, they are saying its mild. Our doctors have told us Bella's handling this Roto virus better then kids who don't have SCID, so it's a minor Roto. Thank goodness. They will still do more virus tests and blood tests this week before chemo, so I'm believing in a miracle that she passes this Roto right on out before transplant. I'm praying that she still has a chance at being virus free entirely, before transplant. Although going from clearing a virus in 7 months to clearing one in 7 days may take a ton load of faith, I got it.

This past week, Bella's freedom from tubes and lines has been little. I'm slowly adjusting back to this way of functioning with her attached to these again. Bella needs extra fluids to help her system get over the Roto virus. They have also made her feeds half Pedialyte/half formula to help her tummy as well. They have also switched one of her meds to iv instead of oral.

Makes it a little more tricky to get Bella in her bouncer or allow her to move freely on the mat and crawl, but we'll get by.

Countdown to Day Zero (Transplant Day)

I've started adding some numbers to Bella's pics. They show the countdown to her BMT day, March 25th,2015. They start with minuses because they refer to transplant day as Day Zero, and every day from there on is a plus! (Yes, pun intended, from me.) After Day Zero they have certain days as markers, so day +100 is typically when a patient is confirmed as "well engraftd." A lot of the "+" plus days mark a lot of "Out-of-the-woods" days. 

So if you see these numbers on her pics from now on, that's the reason. :)

This Week:

We are looking forward to having a lot of fun while feeling strong and happy. Bella has more pre-BMT workup tests this week like her ECHO and more bloodwork. I'm also assuming our donor will have her big meeting with the councilor/therapist by Friday or Monday seeing as Bella's chemo begins next Tuesday. The donor will have that meeting right before Bella starts her chemo and confirms again, she agrees to donating her marrow for Bella. Once that confirmation is made by the donor and the legal parties involved, Bella begins her chemo. 

Praying for strength not only for Bella through all this but our very special donor as well. It may be 2 years before we meet and see how special she is, but I already know she's a strong woman. I feel in my heart she truely knows just what this means to us.