Wait, Wait Some More...Wait! Are You Waiting?

That about sums up what we know, so please don't ask me when we are going home. That question has come up a lot lately since Bella's day +100, and it is painful for me to try and answer. They told us from the start, Home would be 6-9months POST transplant (March 25th,2015). So that puts us at the earliest (keep in mind these are estimates because Bella's a "First of a kind" case to them) Home-time being September. 

I think because there's a bit of miss-conception between the +100 day hype, oncology patient's BMT vs SCID patient's BMT and 100 days being a bit anticlimactic. Bella's +100 day is blood work that tells us how her Tcells and Bcells are functioning because hers never did anything when she was born. I'll ask our Immunologist next week if there's a better way to explain these differences in terms of Bella's special case. 

So we wait, and wait some more because our Immunologist had to be with a super sick little kiddo Friday and was unable to discuss Bella's large Immune Panel blood test results. Hopefully I'll have more details Tuesday. 

However I did get a chance to have a large conversation with Bella's BMT doc on Tuesday last week and he did a good job of summarizing what we know so far. We both had a good laugh because through this whole process we both know Bella's Immunologist (Dr.Wright) does a way better job of this. 

What We Know: Day +108:

- All good news, no bad news. Bella is right on track with her growing new immune system and they are very happy with her progress, still.

- She has an immune system! Wait... Let that sink in, she's never had one before remember. An immune system that is donor in origin. Meaning 100% donor cells, meaning no rejection aka: the BMT worked, but her immune system is not fully recovered yet. 

- Because her cells still show 100% donor that means they are functioning, they just haven't hit the numbers yet that the docs say would allow them to feel more comfortable in changing her isolation/protection protocol. 

So we continue to screen visitors, no playing with any kids, no sick people  near her. 

The RMH has allowed me to write a helpful blurb in the weekly newsletter so the other families in the house understand why I may bat their hands away if they get too close. Haha. Yes, even with my signs I've had to do that a couple times. So hopefully this newsletter note helps. 

- Bella's Tcells (fighter cells) number are still too low to "test them" against bugs or your common cold. They need more time to bulk up, but we'll get there. 

- Dr.Lewis reminded me that it is great that Bella's new cells show 100% donor. We want them to stay that way as they grow and bulk up in numbers,  but they could end up mixing. Mixing as in Tcells could be donor and Bcells could be Bella. We don't want this, but it is manageable if it happens. We have clues right now that continue to say that the cells are functioning well as 100% donor because Bella has not needed any IVIG (immune function boosts) because she's maintaining her own IGG (body's immune function) level above 5. Bella's currently maintaining at 9! 

- Bella has shown no sign of acute GVHD (Graft vs Host Disease) or any at all! This is so so good. Graft being donor cells and Bella being the host. Another example of cells mixing and things going wrong with her body. Another clue hat her Tcells and Bcells are functioning together as 100% donor, still. She's 100% graft. I'll have this confirmed next week when her chimerism tests results are back. So praying she continues to stay this route of 100% donor cells as they learn to grow and function in her body developing a new working immune system. 

- Dr Lewis also reminded me that Bella's team of specialist are in a new territory of decision making based on her case and counts. A lot of their decisions are first time decisions, so she's breaking ground for future SCID cases that come to ACH. He also added out the the 4 they have seen, Bella is the first to be discharged this early after transplant. Proving they are confident with her recovery. :)

Bella passed her overnight Oximetry Test this week! She is officially off all Oxygen requirements. She does not have to wear O2 prongs at night or need that quarter letre any longer. She scored a 96% which is well in the normal range. This proving her lungs have recovered from the hits they took before her BMT. Before discharged from hospital her score from this test was 93%. That was ok but still not high enough for them to make her lungs do all the work just yet. The O2 is quite low as a therapitic dose but her lungs still needed it, and her stats at the time showed it. Now her stats show her lungs are even better. This is also really remarkable seeing as Bella has a smaller lung capacity in general and she's recovering from forms of chronic lung disease that caused pulmonary hypertension. Glad that is all behind her now. Her lungs may be small but they are mighty. 

I think I can finally say that Bella is starting to understand what 'Hunger' feels like and how eating solves that problem. I think this because she's getting quite demanding at the appropriate times now, the times that make sense for when she should be hungry. It's all a huge blessing. She's progressing so well, so fast, I can barely keep up. 

The Past Week: 

Bella's building quite the celebrity status. 

I've recently had 3 interviews with 3 different stations, regarding Bella. The links are on Bella's Facebook Page: "Isabella's Mustard Seed." We were on Global Calgary as a family representing the Ronald McDonald House and what it means to us, Golden West Radio in Swift Current for the Bella Classic golf event, and Shaw SC added Bella's Classic to the event calendar as well. We have been overwhelmed with the support for Bella and their time in sharing her medical story. 

Seeing as Bella's favourite animal is the cow, it was nice that she finally got to attend her first rodeo at Calgary Stampede! We were given amazing seats directly over the bull shoots, by RMH. It was nice that we could use Bella's cover to get her there and then our seats were quite secluded and not right beside anyone else. She loved the whole rodeo show. 

Edie 

Aka: Our Second Mom and our First Ronald McDonald House.

We still keep in touch with Lyle's aunt Edie. She is one amazing woman. We love you mom! :) 

Don't cry. Haha

Edie took us in through the gruesome first part of Bella's stay in hospital, the first 7 months in Saskatoon's RUH. She saw us with Bella at her worst, cried with us, fed us, housed us, we were her kids. We will cherish every uplifting moment she gave us. And we can't wait to get back for a visit for Bella's first haircut! 

Edie is an amazing hair stylist that throughout taking us under her wing, also ran her own business out of her home. And then still made delicious home cooked meals for us every night! Edie and I text and email to keep in touch. She has helped Lyle and I develope our yard, back home. When you see a beautiful kept yard like Edie's, you take note. 

Aunt Edie's beautiful yard this July compared to March. She does an amazing job. 

Lyles hard work on our front yard finally complete, with the help from our second mom, aunt Edie. We love you so much, thank you.

Busy Bella

So I'm quite the sap lately, texting Lyle in tears because Bella won't let me rock her to sleep any more for naps or bed times. Ya, she's a big girl now. And I'm a sad mommy. I loved those moments of her cuddling in my arms, loving it, resting. I cherished the fact that though she's a bit tinier I get to do this a lot longer then most parents. 

Well... I think its over now. For the past week, she won't let me hold her before bedtime. Nope, it's like, "Come Oooon mom, quit touching me...put me down!" And as soon as I do, boom, she's asleep. And then theres me... sobbing like the sappy sap I am in the corner. 

I'll get over it. I'm thankful she is such a good sleeper and now, she doesn't even need my help. Such a big girl. 

She also has come to understand kisses and hugs now, so I get lots of those now to make up for no pre-bed time snuggles.

I still can't keep up with all Bella's words and sounds and signs! More everyday. :) She is "Hulking Out" less with her "rage shake face." It's kinda funny when she does it because she is trying to get out a toy that is stuck. Now she remembers the sign for help and shows me that with a "Hhh" sound. Or she points and says, "dat!" As in, "I want that."  She's also pointing out horses now and cats! Her "meows" and "neighs"are pretty cute. 

 Mommy Momment 

I usually scroll by the hundreds of articles that come across my Facebook feed. Just no time to read or listen to other people's first world problems. However, something in the title of this one caught my eye. I read it and have never felt more like someone is talking about me, ever. I don't usually talk about what I am going through, I don't want to make Bella's blog a sob story about me. I'm a tough girl, push through a lot of BS stress and get on with my day. I also have amazing friends here that help me cope. 

But if you want a glimps into what I think and feel on a daily basis, this read does a spot on job of that. Please know it means a lot to me if you take the time to read this one through. 

Here's the link:

http://ofgritandgrace.com/2015/07/08/to-the-mom-stressed-and-worried-about-her-childs-health/ 

Bella's Classic Tomorrow! 

Bella and Grandpa 

If you have 'liked' and followed Bella's Facebook Page 'Isabella's Mustard Seed' you'll know that her grandpa (my dad) has prepared a huge golf event, Bella's Classic, and the festivities take place tomorrow on Piddle Creek golf course in Swift Current. 

The hard work and support my dad is bringing to his granddaughter is out of this world for a 'supposed to be retired' grandpa. 

I've explained a bit in the update on Bella's GoFundMe page http://www.gofundme.com/BringBabyBellaHome 

about what this support means to Lyle and I. It helps with so much: Bella's expensive specialized formula, Gtube supplies, Gtube care supplies, Broviak central line (in her chest) care supplies, heparin, sterilized supplies, her 7 different medications and of course the travel Lyle does so he can see his baby girl as she grows up. 

I was having a cry-fest (again) on the phone with Lyle the other day because I was sad about missing our dog Jersey and that I am missing 2 years with my fur baby, and missing her so much. And Lyle stops me and says, "Like me with Bella honey." Of course that didn't help stop my cry-fest. A father who is forced to see his baby girl go through a year of termiol and on top of it have to miss most of the first 2 years of her life. It breaks my heart. The more chances Lyle has to tavel to Calgary, the more chances we get to be a family together. 

I am thankful for Country Music Radio sharing Bella's story, and the info about the Bella Classic. They did a wonderful job getting this info out to our home town of Swift Current. Here's the link to look at it all:

http://www.swiftcurrentonline.com/index.php?option=com_content&view=article&id=30618%3Ahave-you-met-bella&catid=48%3Ackswcjsn-blog&Itemid=460 

 

If you are out there somewhere enjoying this beautiful hot summer, cheers to another healthy, successful week of Bella's recovery post BMT. 

We'll hopefully be right there beside you next summer, cheers-ing ourself to it all being over, and the fun beginning!