Day +112•No GVHD•Counts Continue to Improve•

Yeeeaah! To continued good news and results. 

Bella's primary doctor (her Immunilogust Dr.Wright) was finally able to come in and go over Bella's 3 month post BMT (Bone Marrow Transplant) Immune Deficiancy Panel Blood work results. We both did the 'Target Lady' cheer through the whole conversation. 

When summarized in simple form these numbers tell us what Bella's immune system is doing. It is growing, and progressing very nicely. The numbes of the Tcells (fighter cells to fight infection) are growing and gaining. In short, Bella's doctors base decisions on these numbers when blood work is done. That's the waiting game. Decisions are made when the numbers are high enough.

Current Time Line based on Bella's Numbers: 

1. Currently keep on same isolation protocol until CD3 (Marker on the Tcells that fight infections) numbers are higher. 

2. July 30th check counts again (Tcell numbers/CD3) and adjust isolation protocol. 

3. When counts are high enough. Test Bella off isolation in Calgary. 

4. After that, discuss going home. 

 

So we are really waiting on those numbers from the CD3 markers on her Tcells that when they are high enough, say, "Ok... We are ready to take on the common cold!" Until those numbers are high enough, Bella's docs won't risk her getting sick yet. But soon there will come a time when we'll have to take that plunge and watch her new immune system do what she needs it to do, and fight off the common cold effectively. Dr. Lewis laughed and said, "This doesn't mean going to any Chicken Pox parties!"  We laughed pretty hard cause honestly... who does that?!?!

The CD3 marks the cells that take longer to bulk up. These are the ones that learn to build from stem cells and travel to the thymus, and learn what to do there, then go out into the body doing their job. It's a longer wait for these important cells to be come "adult" cells and bulk up enough to fight infection properly. 

I think the happiest part through these discussions yesterday was how extremely happy her doctors are with the fact Bella has not got GVHD (Graft vs Host Disease- which can severely effect skin, liver and gut) It can be serious and a horrible complication with many Bone Marrow Transplants. It is a miracle to rejoice for, that GVHD has not affected Bella. It is so common. I see so many parents with little ones, and from what I have seen, it's like every kid has got it in some way... But not Bella. Thank you Lord. 

And it won't be an issue for Bella. Her docs have said at this point, this far from transplant there is no longer a concern. Bella is a rare case that has proven GVHD does not have to be an issue when a BMT goes well. I hope that other SCID and BMT patients read this and feel relief. Bella's case, protocol, chemo regiment, was all new to her doctors, a lot of first time ground breaking decisions and they have proven successful. 

**Target Lady Cheer**

Why isn't Bella like every other BMT case and starting over the same way at Day Zero? 

Question Answered: 

I finally was able to get this answered by Bella's BMT doc and clarified. 

1. Her Protocol is NEW and her case is still at lot of learning for her doctors. 

2. Her difference is also in the recovery of her immune system because of the different meds used in Bella's regiment. 

~ We can not compare Bella's SCID case to any cancer case because all the medications and chemo regiment before, and the meds after BMT are very different. After BMT they are carefully rebuilding Bella an immune system. Not fighting a cancer virus. Her doc said it is even quite difficult to compare 2 cancer patients. After Day Zero different bodies recovery differently. Not every patient has the same isolation after a transplant.

Another good sign! 

Over the weekend Bella was cutting some nasty molars. Teething was very hard on her body and come Monday I noticed lymph nodes (bumps) on the back of her head, symmetrical, behind the centre of both her ears. 

Side note: Lymph-nodes enlarge when the body is fighting something. I also detected the lymph-nodes that first involved Dr.Wright discovering Bella had SCID. Bella had a biopsy of the armpit lymphnode I alerted the docs about, back in Novemeber, that proved she had SCID. So technically I made the discovery, that lead to the doctors discovery of Bella having SCID.

Back to my story...

Bella's docs confirmed this is a good sign! It shows her new immune system is already doing its job correctly. The lymphnodes are just slightly enlarged and symmetrical, and happening during these major teething bouts. That's exactly what her new immune system should do. Yay Baby Immune System! If its doing this good at the "baby stage" of growth, it's going to work wonders for Bella when it's fully recovered. 

In Clinic Today for 3 hours: 

So that wasn't fun being stuck in the clinic room for 3 hours today, but Bella did great. 

So here's why we were there:

On our way to 3hr clinic visit 

Bella's Immunologist wants her to still receive IVIG as a boost, she doesn't need it. This is a booster for her immune system. It's a blood product that goes into her via her central line for 2 hours.

She never received her monthly boost for May or June because her IGG level (her body maintaining its own level) was always above 5. Even now it's at 10.2, well above normal range. So her BMT docs said she doesn't need IVIG. She still doesn't need it, but her Immunologist still wants her to receive the monthly boosts at this point. 

We were enjoying our short clinic visits before today. But that's ok, they will continue to be less and less. Her BMT team decided they only need to see her once every 2 weeks now! She still has blood work twice a week though. 

The pumps, lines and hospital crib brought back some memories, but Bella did great for the 3 hours we had to be there. 

Bella's Classic Golf Event

Lyle tells me the event was a success. We are so thankful for all the support and for my dad organizing this whole event. The weather was great and so many friends and family enjoyed the day for Bella. Thank you all again. 

Genetics Update • Our Family Future

Numbers say lot. We hear about a rare form of this, a 1 in a billion chance to be born with that, or 1 in 50 000 are affected by this...

I think the opposite way now. How rare, to me, is it to have everything come together and a perfectly healthy baby is born. For me now... It's a heartaching reality. 

Our wonderful Genetisist here in Calgary has got Lyle and I in touch with the Regional Fertility Program that involves Pre Genetic Diagnosis and IVF (Invetro Fertilization) aka: Our only chance (with our odds) at having a healthy baby not affected by SCID (Sevre Combined Immune Deficiency) 

Now that we have had Bella, and all the genetic testing has been done on her and us, we know there is a 1 in 4 chance our next child could have SCID, if we were to conceive naturally and just risk it. Not an option. We would not, could not do that to Bella once we finally get her home... Risk another long term hospital stay with our next baby. Aside from everything else that comes with being born with SCID...nope.

Our only option is to hopefully use this program in Alberta to help us for when we want to have another baby and ensure it is healthy, and not have to endure the pain our sweet Bella has. Lyle and I are excited to have an option! This means we do have a chance at growing our family! Some people don't even get that and that's an even larger heart break. But we are not excited about the costs. 

We still have a lot to learn about this option. The emotional toll, expense, another medical need that or province can't provide us, travel, procedures, time.

We have our first meeting and testing come August 20th.