~ What magnificent change a year can bring ~
Well... I don't need my GPS maps anymore for getting around Calgary. Nope... I know this massive city very well now. It kind of hit me last week, while driving Bella to the Zoo... not a second thought about where to turn, what street I was on. Ya, sadly I can get around Calgary with no problems these days.
Which brings me to the age old question... again, "When are you going home?"
Well on Tuesday I had a real long but real good conversation with Bella's primary BMT doc, Dr.Lewis. I have a lot of concrete answers that I am going to try and explain in this post but the main 2 pieces of info that I am most excited to share are:
1. Bella's chimerisms are ALL still 100% donor! Tcells and Bcells are all still 100% donor. This is the BEST possible news in reference to her new growing immune system. The best results from the panel.
2. Bella's doctors only need ONE panel that shows her counts at the level they need to be, in order to finally send us home. Only ONE panel is needed. And her docs hope to see that panel at the 6th month post BMT mark, September.
Many Medical Updates
Most Recent Immune Panel Blood Work:
The panel before this recent one showed a dip in Bella's Tcell count. It showed them at 97% and now they are back to 100%. Because there is always a small margin of error in these tests they don't believe the 97% and are sure it's remained 100% this entire time. This may seem like a small difference but its not. Anything under 95% they consider "mixed" (donor and recipient) and that can complicate things and cause issues. But she never went there, she's still 100% donor for all her cells and this is the best possible outcome for her immune system to work properly on its own.
Dr.Lewis was very happy to tell me that all her panel results and counts are exactly where they need to be. Her immune system is growing and showing recovery.
CD3s: The major virus fighting Tcells are still in the gym working out and building themselves up. These suppressor Tcells are expected to take this long to recover and prepare to fight viruses so the docs are not surprised by their count still being low. These Tcells are at a ratio count under 300, telling the doctors they are not ready to be tested just yet, against any cold or virus. In order to change Bella's isolation protocol and allow her to be around "possible" sick people or children, or go home, these suppressor Tcell's counts need to be in the normal range. Her doctors hope to see them in that range by the 6th month mark (September).
The Home-Time Question
The main reason I had a long discussion this week with Bella's doctor is because Lyle and I are getting anxious. We needed more concrete answers and information rather then the usual, "wait and see, month by month." It's also really hard on Lyle to only hear what I relay from week to week and not be here constantly, like me, getting new info and updates daily. It's like a real bad never ending game of Telephone.
So we asked better questions his week and received more concrete answers. We also received more reminders to aid our frustration. Dr. Lewis reminded me that though they are happy to hear me ask all these excellent questions for clarity, there is a lot that is difficult for them to answer because Bella is a First Time Case for them here in Canada. Every change, every slight new occurrence (good or bad) is difficult for her team of doctors to react to because it brings on a new decision. They don't have hundreds of cases to compare to (like with common cancers) or previous SCID cases like Bella's to know what to do from... She is it, no other case like her, no similar previous decisions made that they can copy. We are, Dr. Lewis's exact words, somewhat of a "guinea pig case." Bella is way more immune compromised then any other patient they have or have had. They have no choice but to be extra cautious and careful with her case so they want her here, they need her close. Dr.Lewis made it very clear that this need of her to remain in Calgary is for the sheer fact, we live 5 hours away. Going home too soon, before her counts are at the required level, regardless of how amazing she is doing... Is too much of a risk. Those 5 hours between here and home is too much of a risk.
So we asked, "How many panels, counts, tests need to show Bella's counts at the required level in order for us to go home.
The answer: One !
Now, based on other BMT patients (not extremely rare SCID BMT patients like Bella) they have seen these counts be where they want at the 6th month post BMT mark. And for us this will be September. They do Bella's immune panel every 3-4 weeks so we could see it sooner (this one panel with the high enough counts, high enough suppressor Tcells) or her doctors have told me they expect to see these higher normal range counts come Septemebr. It was nice to know we don't have to go month by month per say, but to know more specifically what they expect and when they want to see it by.
I forgot to mention this was all news from Dr.Lewis Bella's primary BMT doc. Bella's primary Immunologist Dr Wright is still away and hopefully we'll get to hear her viewpoint on everything this coming week. Dr.Wright has the ultimate say on when we leave Calgary.
Bella's next Immune Panel is already scheduled for next Tuesday, Aug. 18th.
New News
Bella has a CT scan tomorrow morning.
Here's why:
Her doctor has been following her lymphnodes for the past month and specifically a few near her neck area. One has possibly become a little larger. This could be 2 things. We are hoping that her lymphnodes are in a normal reactive state and that is all. Everyone has the EBV (mono bug) in them and it can be dormant. Bella tested positive for it the first time this week and that is completely fine. It may just be "awake" and her lymphnodes are reacting to it normally. They see this through her count for this being at 3000. Recently it jumped to
30 000. Not to worry but this increase in number and the lymphnode's size sparked a reaction from her docs to check it out early as to get ahead, incase it is anything else.
We DON'T want this to mean the lymphnode has transformed in a negative way to malignant involving PTLD. Sorry I only remember the acrinim but we don't want this to be a PTLD/malignant/cancerous issue. Besides, Bella would present as a lot more sickly, and the numbers would be in the 100 000's range. So we can be reassured that her docs are jumping on this really early, checking it out with a CT scan tomorrow and we pray the results show normal reactive lymphnodes. Our BMT nurse reassured me this is an early intervention to make sure they stay on top of any change and that she currently has a patient (and has seen patients) with this number being 200 000 and no sign of PTLD or Lymphoma.
To Build Or Not To Build... A Bear.
Not...
We were very excited to take Bella to Build A Bear but her docs called me the day before and said,"no." I had changed her clinic time at the hospital, so we could go... thats what alerted them to call me and say not to take her. They are still quite strict with her isolation at this point and don't want her inside in any public places. The RMH (Ronald McDonal House) had planned a trip to Build ABear specifically for immune suppressed children. They planned so we could be there before the mall even opened. But Bella's docs still said no because we just are not allowed to have Bella around other children or places we just have no control over. And they are right. As cautious as I am with Bella, I can't control who other kids have been around, or what. I can't always spot clean every surface that Bella may touch, or I may touch and then touch her. Viruses do live on surfaces. It's just still too risky. I guess it just gets me down because even though she's doing so well it's a "slap in the face" reminder that I can't let her experience what every other healthy kid gets too. It makes me break down knowing she doesn't get a summer at the lake, she doesn't get to play with her cousins, make friends or get her face painted at a fair and ride a pony. I know a lot have said, "Well she's too young to realize." Well, having grown up in a hospital room and on isolation that may be... But I realize and it affects me.
Eating and Drinking
Bella continues to progress with her eating. She is eating a great breakfast every morning and getting better at eating more during supper. It's just that drinking part she is still working on. As frustrated as I get I need to know, it'll come. It confuses me because she knows how to drink, she has drank before but doesn't want to now. But with eating... It's a new skill, she had to learn and now has taken off wonderfully. To me, it's like she prefers the feeling of eating over drinking. I could be totally wrong. I just wish she could remember how fast a nice bottle of yummy formula can make her feel. And now that she is tolerating 75% mix of her new yummy formula, she could drink this yummy vanilla flavoured (yes I tried it, it's good) formula on its own and like it!
But.. She pushes it away and says, "done," with the cutest little tone in her voice. I've taken my hubbies advice this week and put the sippy cup down and away. I'm not going to push it on her and make her hate it. Even though I've tried multiple sippy cups, regular cups and even the bottle...I'm giving her a break from it all. I have her SLP/OT coming to help us next week with this drinking issue and we'll go from there.
Bella's Day +138
Don't Forget:
- Educate Yourself. Please read this excellent article on the immune system. It is an easy read that reviews many terms I have used. http://primaryimmune.org/about-primary-immunodeficiencies/relevant-info/the-immune-system/
This is a good article as well that gives good detail about types of immune diseases including SCID:
- More Hospital Mom Hacks helpful YouTube videos coming this week!
- Be a Bone Marrow Donor!
- Give Blood
- Keep a sense of humour
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