More Details n Things

Ya ya I know, my post titles have been weak lately... I'll work on that. Haha 

Also, sorry for the stressed out rant in the last post. It's so overwhelming to even share small portions of the stress we are under, seeing our baby girl going through any pain when she has simply just endured enough. It's overwhelming when I want so badly for everyone to understand what she's going through. I rant about one of the many things our Bella has to go through, and the worst of it is... I'm stuck re-reading that post thinking "My goodness, what I just wrote is not even a quarter of what is all going on in terms of stress, worry, anxiety and pain."  Sometimes after, I refuse to feel defeated and I command peaceful thoughts, I say hopeful words out loud and I pray. Other times I feel so beat'n up for what my daughter has to go through I think, "God, PTSD is so cruel." And then I pray some more. I'm remaining strong for my baby girl. I don't care how much pain I'm feeling or how badly I want to take hers away, I will remain strong and speak in strength with my words for her. 

On a more eventful note, Bella has started her training for the next mountain she's going to move. Yes, strength training. Ha ha. She's warming up by knocking down towers. One of her favorite things to do during play time on the mat.

Bella Vs Tower

Round 3

Physio:

Bella is a crawling machine and sometimes doing the bear crawl as well. No more army crawl. She's also crawling over big objects and "couch surfing" of course. She's walking so well by just barely hangin on to my fingertips. She knows what "no hands" means and she starts to show off when she's couch surfing. She'll be holding on to the crib rail or something while she's standing. As soon as you say, "No Hands!" She gets all excited, takes her hands away and balances with this "Holy crap I'm awesome" face the whole time. It's pretty  sweet.

Bingo: 

Every Wednesday Unit 1 has a bingo for every patient! So because the majority are on isolation like Bella is, we all get walkie talkies! It's so fun and she gets to choose from amazing prizes every week. It works out great for physio on Wednesdays aswell because she has a new exciting toy to try out that really gets her boogy'n across the mat to get it.

SLP:

Bella's speech and language is still progressing and impressing her SLP lady, the nurses, doctors and us of course. She has 20 some words now and saying more and more new sounds everyday. She's selecting and choosing and using more words together. Her expression and receptive skills are so great for only being 15 months old tomorrow. 

Unit 1 Friends:

Recently a sweet 9 year old girl right across from Bella's room was admitted and guess what her name is?! Yes, Isabella too. So they are Besties now. I met the lil girls mom the other day and older Isabella is obsessed with making sure our lil Bella is ok. She's always asking her mom to look and make sure she's happy. She's always asking about her. The other day they got to smile at each other through the windows in their doors. 

Teeth!

From what I can see, well what Bella lets me see, she's got 6 teeth now! There's probably more but I don't dare to purposefully piss her off. So I don't go poken around in her mouth. But I did see a new fourth bottom tooth today! So she has her 2 top middle and 4 bottom middle teeth right up front, ready for the camera. :)

Recent Tests:

CT Scan & Ultraaound

These are a part of Bella's pre-BMT workup tests. The CT scan was fast, about 1min in total. They bundle her tight in what looks like a mini blue sleeping bag that goes up to her neck, with Velcro straps to keep her tight and not wiggly. Then they inject the solution in her iv line and start the CT machine up. Which sounds like a jet engine by the way. But Bella was calm, I think she was liking the warm blanket bundle and iPad cartoons. So it went well. Her results were great. No abnormalities detected at all. 

Her ultrasound took like 30min! Thank goodness the iPad cartoons worked for that as well. They had to check all her organs, liver, kidneys,etc. So I held her hand as the tech ran the stick through the jelly over her belly and I held back some tears thinking what I would give to be in this same position with my baby girl in 20some years. To know she's grown up healthy enough to have her own lil one. 

Heart Tests: 

Bella's had a few ECGs and ECHOs in the last few months. Many of the ECGs must be done before starting a new med that may affect her heart. She had another ECG today. They put about 15 stickers and cords on her chest and ran a 30sec print out from the computer. She has an ECHO next week which will be the ultrasound of her heart to get a baseline of its function before chemo.

Shots and Bloodwork:

Thank God Bella has the double lumen Broviak central line iv sewn into her chest vein for the majority of her blood work but she still had to receive a needle poke the other day for her RSV shot. Honestly if I took the time to count from, Bella's Beads of Courage Tracking, I wouldn't be far off if I said she's had to endure around over 100 needles in her first year of life. Over 100 pokes... I'll let you chew on that for a minute. 

You really start to understand the value of the central line sewn into her chest now.

She had her monthly IVIG today. That's her antibody boost. So she had to be hooked up to some lines and pumps today for a few hours. This boost is infused through her central line.

She's still getting her blood taken twice a week and with that they check all her levels for her meds, etc. 

Ok, my thumbs are getting sore going to save the rest for another day. 

Fun 'n Fussy Updates (March 5th,'15)

Bella's Current Motto: 

So... What's been go'n on you ask? Well, quite a bit. The past week has been pretty busy. Bella's had some real good days and recently some really stressful ones. It's always been an extreme stress on her and us to figure out why she pukes, there's always been so many factors. After we got the main one out the of way (blockages from Hirschprungs) there's been med changes, virus issues, motility issues, gaining weight, not gaining weight, retching episodes, ng, gtube, continuous feeds, to bolus feeds, to a mix of bolus in the day continuous at night, oh and then she's NPO (not fed) for 8 hours one day for procedures and tests... have I used enough commas yet, does your head hurt as much as mine? 

Ya, so... Tid bit stressful when you want your daughter to have one effing break before she starts effing chemo. 

Arghh...

Bella is feeling better today. Sun/Mon/Tues were hard. She was puking every feed and really not herself. After all the changes we made with her feeds and meds we couldn't figure out why things were so worse. Well... found out today she has Rotovirus. We have been protective in every single way possible, and so have the nurses. The virus is not even going around on the unit. Bella does not need this before chemo and transplant. I'm praying right now the result was wrong. But it could explain her bout of more puking on Monday.

Bella recently had her kidneys tested. This being part of the routine workup before transplant. They are fine but not filtering as quickly as the doctors would like so they will adjust her meds accordingly. However, she does not need a virus of any kind, going into transplant. Her kidneys will have enough work to do, we don't want her system stressed out more. And guess WHY this is??!! Well, if Bella's kidneys didn't have to go through the bullshit of months on antibiotics in Sasktoon, the 3 weeks in PICU on a mass amout of antibiotics saving her life from septic shock because we didn't know she had flip'n SCID! Ugh... well then her kidneys would be a lot stronger and functioning better. So ya, another reason why a SCID screening program could of saved her all those months of pain. And aparently, could of saved her kidneys. 

Anyway, so we hope and pray this Rotovirus is gone before transplant. But with no immune system, you can shed a virus for months, like she has with the Entero/Rhino virus she's still shedding that she got back in Sept. 2014.  It was really deflating to hear the Roto virus results today. I just want my baby girl at her strongest before chemo. She doesn't need more puking and pain before going through chemo. Her body is going to have to work hard enough to let chemo do its job and then on top of that, not allow anything to cause a complication while waiting for her new donor cells to take over and get her a fully functioning immune system. 

We have been so diligent and working so hard to make sure nothing like this happens before transplant. I wipe her entire room down with cavi wipes daily. We've been so strict on what goes in and out of her room. Her doctors, nurses and myself are conpletely stumped on how she could of got Roto in the last month. 

But! Bella is Brave, she's have'n a good day today and she's our super hero! 

I jazzed up her burn netting dressing that she wears to keep her central line (iv line) from dangling near her diaper. She wears the burn netting like a little tight tank top and I thought they needed a lil more jaz. :)

Lol.. The only cute current pic I have of her wearing her netting tank top. Teehehe

BMT Day Zero Date Confirmed!

Our winning Power Ball numbers are... drum roll pleeeeease!  17, 23 and 25! Of March that is. 

Yes, our BMT team doctors have negotiated a date with the donor and Bella's bone marrow donor has agreed to have the drawing of her bone marrow procedure on March 23rd.

Thinking back a couple months when this donor search just began mid December 2014, it's so overwhelming to finally have a confirmed date for Bella's start to a new working immune system. 

So, the donor is going to go through a second string of rigorous tests to confirm that this procedure will not pose a risk to themselves and have further checks done to make sure there is absolutely nothing about them that may pose a risk to Bella. These second set of tests should be done by the second week of March. Our BMT docs are very confident things will continue to go smoothly for the donor, seeing as her first set of baseline tests look great.

Bella's chemo (conditioning) will begin on March 17th. This means the donor will have their major meeting the week prior where a physician and psychiatrist will (in their own words) tell the donor there is no turning back at this point, the patient (Bella) starts her chemo on the 17th. 

I'm going to be sure to take another picture of Bella's beautiful locks on March 16th before her chemo starts. Her hair is growing in so beautifully. This is the current immune supresent meds doing this and fixing her skin. So she has baby soft skin and beautiful blonde hair growing. 

The chemo conditioning Bella will be going through is "Low Dose Chemo." They have told us kids have tolerated this very well and in some cases, don't lose all their hair. 

We have a meeting tomorrow with our BMT team to discuss Bella's whole course of meds and chemo meds. So we will find out more information about the spectrum of what to expect during Bella's 8 days of chemo prior to transplant. 

Day ZERO will be March 25th, 2015.

So, the donor will have their marrow drawn on the 23rd, it gets processed and shipped and is ready for them to transfuse the donor cells into to Bella via her IV line on the 25th! 

That will be the big big day! And we pray all goes well, no rejection, no complications. 

The doctors have a few weeks now to get the rest of Bella's pre BMT workup done. She has kidney testing left. As well as ultrasounds, ECGs, and a CT Scan. 

Today Bella made sure to wear her Pink in support of Anti-Bullying Day. 

I recently joined a wonderful supportive group on Facebook where I can connect with other parents that have children who have fought or are fighting SCID from around the world. It's called "SCID Angels for Life Foundation." A wonderful mom from the group made these awareness pics for Rare Disease Day for each child. I started a hashtag for Bella. #Bellabrave.

They Picked the 10 on 10!

I haven't had much time to post on the blog since Lyle got an early birthday present on Friday! Our BMT team met with us Friday afternoon and shared the great news of them choosing the 10/10 donor and confirming that they have Activated the donor. Things REALLY get rolling now!

Even though the waiting game has been long (and still is) it's a bit easier to put up with when Bella is doing so so well. She is a happy bug.  We were quite frustrated with different members of the team trying to keep us updated with the reasons why things were taking a little longer and the different waiting stages. They had promised an update meeting Friday morning. So we waited...waited some more...then 4pm rolled around and we were starting to accept we would have to now WAIT until Monday. But Dr. Lewis and our BMT nurse Ellen finally arrived and we had a great conversation about all the current details, activating the donor, etc. I'll try to share all the details from our meeting Friday in this post, but please forgive me if I use a lot of medical jargon. Its a lot easier for me to use the doctor's/specialist's terms that I have come to understand well because I have been in a hospital with my daughter for over a year. I feel like there's got to be some medical profession exam out there that I could challenge. I feel really confident that I'd pass. ha ha.
Anyway, on with the fun facts.

Our perfect match donor is Female. Her blood type is B. (Bella's is O, but with this BMT process, this is ok. I'll explain more later.) Our donor is of course the 10/10 match.

They are not allowed to tell us anymore details about our donor. However, we can write her a letter! The letter would have to be seen by very many inspecting eyes first to make sure we don't give any clues about Bella or us, but we can write her a letter! Otherwise, for many legal reasons we must wait 2 years before we are allowed to try and meet Bella's donor or contact them in any other way.
I have a hunch this girl is far away or out of Canada. I think I'm going to write myself a note of all the guesses I have about Bella's donor so when we finally meet her I can see how close I was on my guesses. From some of the way things have been going, the time, the words Dr. Lewis used in our conversation...I have a strong feeling she's not in Canada. (I also think I'd make a good detective, but that's off topic now.)

So yes, Dr.Lewis needed to inspect every detail of the 9/10 vs the 10/10 before choosing. They are very confident with choosing the 10/10 after receiving all the lab work info about both. The "matching" is the most important part of choosing between these two donors for Bella. The better match is Bella's best chance at not getting GVHD. (this can be very bad, do not want.) So after looking at the work ups of both donors they found they both past very well with flying colors in the areas involving other factors (infectious disease testing, etc) So they went back to saying, the better match comes first for Bella. The work ups included Infectious disease testing, exposures that have happened to the donor, etc. They were both equally perfect in these tests. We wouldn't have to worry or stress even if they did choose the 9/10 donor because Dr. Lewis said you can "sacrifice the match" in immune suppressed patients with the drugs they now have these days.

Even though our donor is a B blood type and Bella is an O, this is not a worry. They are focusing on fixing Bella's Immune System so this deals with her white blood cells. Because Bella is so small (a baby) and well just over 14lbs now, they will have plenty of Bone Marrow to separate without losing the amount they need to give Bella. There is only a certain amount of marrow you can draw from the donor. They can separate and take out what they need from the donor's marrow without sacrificing the amount Bella needs for this to be successful. If Bella were a larger person, this would not work. Bella would have to be the same blood type because if she were larger, and a different blood type, the "separating process" would not leave enough of what she would need. So because she's tiny, they can do the separating process and being different blood types (B and O) will not matter.

The next Waiting Stage:
Now that they have 'Activated the Donor' this means even more rigorous testing for the donor. The donor currently meets all safety and infectious disease testing criteria for Bella, now they have to make sure on a few more things. With the testing that now comes for the donor, some tests include making sure this procedure isn't a risk to themselves. For example they have to check that any type of anesthetics don't affect them in a bad way. Activating also means that our BMT team has contacted the donor's medical team/registry and offered dates they would like our donor to be available for the procedure day, when they draw the marrow. Our BMT team gave the donor a few date options within the next 4 weeks. Now we wait until (hopefully next week) for the donor to reply with a date that works for them. They said our donor has the option of requesting a sooner date from what our doctors offered  them as well! So hopefully next week we will have a date for Bella's DAY ZERO (transplant day).

BMT/Genetics/Pictures

Blog: 

Just a lil FYI for Bella's blog. I don't put every blog post on my facebook wall. So if you would like to be fully caught up, the best way is to look at Bella's blog on a computer. (You can't see the archive on cell phones.) The archive on the computer is the side list of every blog post I've made on here since I started the blog. :) 

BMT Update: 

Still in "wait mode" but we have more info on why our "wait mode" is the way it is. Every detail is helpful when your anxiously awaiting info that deals with your child's survival. 

Today we found out that our BMT doctor Dr. Lewis is actually still waiting for more lab work to come in from the donors. He has most of what he needs but still a bit left to come in before making the final decision on which donor is best for Bella.  Again, this is a huge and rare blessing for them to have even 2 donors to pick from. So they need to make sure the decision is the absolute best for Bella and her ability to accept the donor's marrow.

Secondly, the BMT team only meets on Mondays to review all results and updates. So that is why things tend to be week by week and not day by day.

Therefore, we'll patiently await (speaking in faith) even more great news for Bella's transplant, on Monday the 23rd. 

Genetics:

In short, we do not know why Bella was born with SCID. Sasktoon Genetics has been looking at Bella's bloodwork since we found out she had Hirschsprungs in Sasktoon Dec. 2013. Calgary's Genetics team has been looking at Bella's blood and working with Sasktoon's team since we found out she has SCID in Nov. 2014. 

They have done many batteries of tests to try and figure out the "why."

Our immunologist told us SCID is rare in itself, so to find out the type of SCID Bella has is even trickier. There are about only 20 types of SCID. And that's based on the ones Genetics has been able to find. There are some cases that go unknown. 

We should get an update from Genetics this month. 

Bella's love for reading and books is still as strong as it was when she was a month old and reading to her was the only thing that calmed her down during any medical procedure or poke in hospital. 

Just thinking about all the vaccination debates going on. Take a minute and imagine sitting your baby/child down for a needle. Anticipating that pain from the needle. Now imagine if the only thing in that moment that calmed your child was reading to them and showing them a book. Pretty spectacular eh. Bella went through weeks in hospital when they had to poke her daily and sometimes more than once a day. Day after day... I read to her a lot.

She LOVES turning her own pages and of course holding the books herself now. 

She will ask for a book constantly. And when she's done looking at one she'll ask for more until her book drawer is empty. This is our daily morning routine when she wakes up. She wakes up happy, and asks for a book. 

UpDate on Bella's BMT process

Bella Beauty Bomb to brighten your day: 

I had a very good discussion with our second BMT nurse today. Things have been a little behind with our primary BMT nurse being away from work right now. 

In short, our 2 week wait on the donor's blood samples has turned into a 4 week wait. This is totally fine and normal and expected. 

The reasons behind this wait being longer are: 1. When the lab is busy, HLA typing takes longer. 2.location and reaction time of the BMT center from where the donor lives when contacting and sending samples. (We still don't know where our two donors are from. Could be France and/or Australia for all I know right now.) And that would be super cool. 3.Shipping Dates: When they tell Calgary the blood samples will arrive the 16th... It's actually anywhere from 2-5 days after the 16th that they actually arrive. 

But! I did find out today (drum roll please!)... The lab work for both donors is done and back! (The 9/10 and 10/10) Yay!

Next Steps:

Our main BMT doctor Dr. Lewis (Head of the BMT Clinic Program aka: The Best BMT doctor and is "the" Guy) is back tomorw. He will look at all factors of both donors and decide which donor to use for Bella. Now, I know what you're asking, "What?! Don't they just go with the obvious 10/10?!... No deciding."

Ya, I asked that today to our BMT nurse. She explained that yes the 10 markers they initially look at are very important but there can be other factors that can make the 9/10 donor better for Bella. 

I know, I was blown away too. I'm just happy that we have the best specialists knowing exactly what to look at for the decision and praise God we have 2 donors to pick from. That is a huge blessing in itself. 

So, what might make the 9/10 donor better for Bella vs the 10/10? 

1. Age: The younger the better. The best age to donate marrow is the youngest you can be for it which is 18. I plan to help raise awareness for being a donor in highschools after all this. If our grade 12s can be more aware of what it takes to be a bone marrow donor, they could have the potential to save lives. 

2. Blood Group Match. Dr. Lewis will have to consider which donor has a better blood group match for Bella. 

3. Female who has had children. If the donor has had kids this means they have been exposed to more antibodies and that poses more risk for Bella. 

Dr. Lewis will of course go over all of this with us in the near future. So tonight I'm praying his decision is easy because the 10/10 will be an 18-25 year old who hasn't had kids. Hope'n and praying that perhaps both donors fit that profile and the BMT team will speak with confidence to us about the easy choice. We'll find out soon. :)

After That:

Dr. Lewis will sign off on which donor he has chosen. He will then contact the donor and give the donor a date of when they need them to be available. When that date is set they have then "Activated The Donor." The donor will then go through more tests and so will Bella. They will work out the right day to start Bella's Conditioning (8 Days of Chemo). From the day they "Activate the Donor" until Bella's Transplant day is usually 2-4 weeks. We are getting closer! 

So, as of tomorw, we could safely say Bella could be within 1 month of Day Zero (transplant day).  

BMT update/ Beads of Courage

BMT Update:

Today marks 3 weeks we have been waiting to hear back on the confirmation of Bella's bone marrow donor being a 10 on 10 match and available to donate. We should know more Monday.

Initially our BMT team thought 1-2 wks wait but HLA typing is tricky, things have to grow in the lab, etc. And also if lab work for an urgent case comes up some of Bella's lab work could get bumped. So we need to be patient. No news can be good news too. Our Immunologist Dr.Wright agrees that Bella is obviously an urgent case and wants things moving faster for her, so she is on top of contacting the lab and checking in with the BMT team as well.  

Beads of Courage

I started a binder for Bella's beads cards, since she has over a years worth now. Bella probably has over 1000 beads in total given the first chunk from her first 10 months in hospital. Even though I have changed many to "weekly" vs daily beads, she still has over 1000. With this second round in hospital (since Oct. 15th, 2014) she has roughly 300. 

Between each yellow bead is 1 week in hospital. Yellow beads represent an overnight stay in hospital. 

With some very special beads comes a card. This card describes the bead and I usually write the date, description of the beads and what it represents on the card as well. 

From Saskatoon Bella received one bead from a girl who wore both beads on her shoe while she played in a school volleyball tournament. Each player wrote a special note of encouragement to a child in hospital that would receive the bead of courage. It was a beautiful note that brought tears to my eyes for my baby girl. The student who wrote the note for Bella is 15 and has an amazing heart. 

I'm excited for Bella to one day understand what all her beads mean. 

Blk/White Heart: A bead of courage for the day we had a meeting with the specialists who told me for the first time Bella has SCID, needs chemo, and an urgent BMT.

Ambulance Bead: The Childlife coordinator told me she only had 2 of these large beads and that Bella really deserved it after the many many plane rides and road travels by ambulance.

Snowman: represents New Years! (Jan. 1st, 2015.)

And... the list goes on. 

I'm open to ideas on how to display these in our house when we get home.