Onward • Day +203 Post BMT

It's been:

•536 days in hospital and counting

•203 days since Bella's Bone Marrow Transplant

•481 days in RMH in Calgary

•Exactly 1 year since Bella caught a glimpse of home in Swift Current for that 1 month. 

I've been broken.

Put back together, 

Smashed 

Put back together

Bulldozed

Put back together... Onward. 

It's been a torturous week back in hospital with Bella so why don't I start with happier news from the glorious 2 weeks and 5 days we were discharged for. (Sept. 18th- Oct 7th)

During these couple weeks everything was so smooth. I even caught myself saying it has been our best weeks yet. Bella had been feeling wonderful and developing in so many fun, toddler type ways. Because of her daddy, Bella started doing amazing with her walking with her push cart. I was a bit nervous with letting her just go. But with Lyles coaching, she's a pro now. I posted a video on her Facebook page "Isabellas Mustard Seed."

We also received a card from Bella's bone marrow donor! This was so so exciting. We sent Bella's donor a card and letter back in April. So to receive a card back, 6 months later shows you just how strict of a process One Match uses. We have quite a few guesses on where Bella's donor is from based on her wording in the card/letter. I would love to create a fun guessing pool contest on Bella's Facebook page at a later time. So keep an eye out for that fun to come.

During these relaxed, easy going weeks at RMH with Bella, I also found time to give our RMH room a much needed purge clean. I actually stuffed 7 large boxes full of stuff that we no longer needed in our room, and got it out. That felt good. 

I think I was riding the high of all Bella's doctors making a to-do list for us going home to Swift Current. I was so excited that it looked like we could be home before Novemeber. 

Not anymore.

Bella's physical skills are developing so well even though she is mainly in a small space/room. I've tried to make our little space into a mini jungle gym for her. She is so close now to walking all on her own. One of her favourite activities is trying on all her hats. It's so cute. I have them all hanging on 3m hooks on a wall and she loves picking them off the wall and putting them on and taking them off. Her absolute fave is still her pink/orange and purple toque. Thank you again Jack and Alyssa. And thank you for the de-stress moments that my adult color book brings me, Carissa. 

Things were going so so well. In the 3 weeks we started those 3 antibiotics for that rare MAC bug, Bella's nodes fully shrunk and went away! It is a great sign that those medications worked so fast. We'll be hopefully discussing this soon with Bella's doctors. But we are all dealing with the worse issue right now, trying to solve the Hemolytic Anemia. Which I'll get to explaining in a moment.  But if the 3 antibiotics worked so fast already, maybe she won't need to be on them for an entire year. I'll be discussing this with Bella's docs at a later time. It's good they are working though, for that MAC bug issue. 

We also started weaning Bella's harshest BMT med, Cyclosporin. This was a big step post transplant, that has now also been put on hold due to the new issue. I was quite exited about getting Bella off this cyclo med, and being able to see her new immune system fully working on its own! But the weaning has been put on hold as well until this Hemolytic Anemia issue is solved. This is really upsetting for me because we saw a timeline in our minds, we had it, so close. Coming off this med meant seeing Bella come off other medications sooner, we'd see her immune system competent, we'd be able to test it and give her normal immunizations, and we had a time frame of this all happening, when starting the Cyclo med wean. That is now all on hold and postponed. It's discouraging because this all ties in to a time line of when I get to be home with her and not worry about her immune system before I have to go back to work. It feels like walls closing in on me.

So October 7th came along and I fell apart, A lot, fell apart. And Bella was readmitted back in hospital on unit 1. 

Our different, yet big room. So far Bella has stayed in 4 different rooms on Unit 1.

Although these white boards could be fun to alter as parents (as I have) I think they are so great for the kids staying here, as well as the nurses. I remember having papers taped to the nurses station wall with notes and reminders... These new boards solve a lot of that. 

Since Oct. 7th

This is where I have been broken again. What this new issue has meant in terms of suffering and agony this week, is feeling like a torture chamber that I've been locked in, forced to watch my daughter suffer while I suffocate. 

You know, I cherish the connections and ability to talk with other parents in similar circumstances on Facebook. And I can tell ya, if it wasn't for the chance to hear from them, talk with them, I'm not sure how else I could catch a breath. In such rare circumstances that Bella has had to face, it's a miracle that I have found other parents who get it. And hearing from them means so much to me. Recently I read a post from a mom whose little guy is only about 30 days ahead of Bella from a BMT, he also is fighting SCID. And his mom wrote a post that literally took my breath away because it is exactly how I am feeling.

This is her post, this is what I feel:

Rare #6

Seriously, the wind was knocked out of me after the MAC bug issue, heck the friggen SCID diagnosis!!! And now autoimmune Hemolytic Anemia! Yes I'm shouting again! Ugh...

So one, there's the Hirschprungs Disease diagnosis that took Bella's colon. Two is the SCID, that almost killed her. Three is the still ongoing diagnosis by genetics about the underlying genetic diagnosis of CHH which they are currently 95% sure of. Four is the chance that all 3 of those are connected or not. If they are all seperate issues then that makes Bella's condition even more rare. Five is the MAC bug and now six, autoimmune hemolytic anemia. There's also technically a seven. Ya I know, I've strained my eyes rolling them at this because it's so friggen ridiculous. I find myself wanting to punch the wall regularly when I hear the word "rare." Anyways, Bella's right arm/wrist nerve damage that they are also still working on. I have more updates on this as well. 

Bella's docs have said that the Hemalytic Anemia in an immune deficiency patient's case like Bella's, post BMT is an uncommon phenomenon. There are not a lot of reports out there to tell our doctors this is how you fix it. So based on what has been tried and the variants of other cases similarities, Bella's docs have a list of things to try first, second, third... Based on how Bella's system responds.  

Hemolytic Anemia

What Bella's immunologists think is going on is that her immune system has created antibodies against her own red blood cells. This causes her immune system to attack her red blood cells which causes hemolysis, breaking of the red blood cell membrane. This causes her to have low hemoglobin (Hgb). This issue came out of no where on Oct. 7th and we've been dealing with it since. They think it could also mean something good though... If that makes sense. This could all be because her immune system is coming in with her B cells ahead of her Tcells. It's good because she's still 100% donor cells, and her counts are stable and are increasing. It's just that her Bcells are acting stupid and they came in faster than the Tcells. So the Teaching Tcells haven't caught up enough yet to tell them what to do and work properly. 

The Fix...The Torture. 

Because they don't see this particular case a lot, it's tricky to know exactly what will solve this. With low HGb you get extremely tired and lethargic. Bella's work of breathing and fever alerted me to bring her in on Oct 7th at 2am. (The episode where I was awake for a total of 48hours.) Her HGb at that time was 67. Waaaaay below what it should be. She should be well above 100. Her low limit for a blood transfusion is 80.  So they gave her blood and that brought it up , but just for a short time. We need her HGb to stabilize above 100. 

The doctors first step of action was to use a steroid med called Predisone. Bella was on this back in April for other reasons. The mention of this steroid brought me to tears. This med changes your child and it's heartbreaking to watch. 

For the past week I've had to watch my little girl cry anxiously, with frustration and pain. She doesn't know what she wants and this med makes her angry, anxious, frustrated, irritated and can also give them bad dreams. After the first dose she would rage a lot and cry momma repeatedly and anxiously while I scrambled to figure out what would calm her. Then she turned to a quiet "poker face." She's either upset or just not happy, zoned out. I feel as though her character has been stripped and she isn't smiling or giggling. I'm broken with this. It's torture to see her so hurting and not know why.  I'm feeling helpless while trying to sooth her. She wants so bad for me to hold her, asks to be held and then pushes away. 

My happy baby girl is not herself right now because of this med and I'm constantly in tears because it is so bad. 

In 5 days Bella has needed 3 blood transfusions. These of course to keep her HGb up after it dropped. Low HGb also makes you very upset, lethargic, uneasy. The first dose of steroid wasn't enough. Bella has now been on the highest iv dose of steroid called Methapred, since Monday. After a straight faced "zombie" couple of days, Bella had another "rage/anxious" cry episode with tonight's dose of steroid. I just held her, swayed her a bit and after about an hour she fell asleep in my arms. I just broke down in tears and asked God for peace, rest and joy. We were both a puddle by the end of an hour. Bella in my arms and my tears on the floor. 

I'm a bit discouraged after Bella's HGb today has dropped a bit again. I'll be talking  with her doctors tomorw to see what the plan is. They'll know what to do, I trust that. We were hoping so bad the steroid would be the fix. Stabilize her HGb, stop the hemolytic anemia, then wean the steroid off and things would be back to normal. Tomorrow I pray her HGb is up and we can start weaning the steroid off. But we'll see, her doctors may want to give it more time at this high dose, or try something else. Either way I'm just praying her HGb stabilizes and this blood issue is ended soon. 

At this point in the blog post I went to sleep and now its Thursday morning and we have good news:

Thursday, Oct. 15th 2015

Happy Birthday Grandma Cheryl Thomson!

Bella's HGb is up today from 88-93! This is good response from Bella's system. She's also done the large iv dose of Methapred steroid. She still remains on the steroid Predisone at a lower dose and we watch and hope her HGb continues  to stabilize. The doctors want to watch this closely over the weekend and hopefully no other steps are needed. We are hoping the steroid was enough to support her system and now she can start to maintain a good HGb level on her own. This level needs to be above 100 and they do another check tomorw. Hopefully this is it and we just start weaning her off the steroid. The doctors do have a back up plan if this isn't resolved by Monday. 

Thank you again to all of our friends, family and people we haven't even met yet! The Fall Photoshoot for Bella was a beautiful blessing that I thank a wonderful group of ladies in Swift Current for. The photo suprise brought me happy tears to see this love from people Bella hasn't even met yet. The timing of this brought me such relief as well, thank you. 

Thank you to my fellow BMT medical momma Michelle here in Calgary. Your "pick me up" gifts always have perfect timing and help me so so much. 

And a big Thank you to all of those who have messaged me lately. Your words and letters you have sent give me such grace and peace, it's like a breath of fresh air when I read them. Some of you I don't even know or haven't seen in years and you write to me with such care and love, it means so much. I keep all of the messages and re read them at times when I am really really down and discouraged. 

Bella's Facebook Pages app is now working again so you can message me on there, or on my Facebook at Kyla C. Thomson or on this blog as well. I've had a few friends have troubles sending us gifts as the RMH postal code was incorrect under our contacts section for a while. It should be T3B 2R6. 

I've piled a lot into this overdue blog post so I'll come back to Bella's wrist surgery updates and Nov. 4th surgery updates at a later time in the next post. For now we are concentrating on solving the Hemoltyic Anemia, praying she stabilizes her own HGb level and happy that her new immune system is still 100% donor and still growing stronger each day. 

Thank you again for following along with us through this blog and Bella's Facebook page. Just knowing we have the love and support of friends, family and strangers following and understanding means so much to me. Even when someone sends me a simple note letting me know they follow and care, it gives me extra love and endurance to carry on with this life and help keep my daughter strong.