Some say, "It's not always sunshine and rainbows." Welp... In this post it is! :)
We have lots of good news to share and we're super stoked about it. :)
February 15th, 2016
2years 1week in Hospital from Birth
Day +327 Post BMT
Day 65 at Home
Calgary Clinic Visit•Feb. 2nd, 2016
We had a LOT go on during this visit for Bells's second check up with her BMT doctors. It started with Bella getting sick juuuust as we pulled into Calgary that Monday evening. What I first thought was maybe her being car sick turned out to be Bella showing us she could fight and get over a random (non-serious) virus/bug on her own! If you follow Bella's Facebook Page you'd remember my updates posted about that. But in short we were happy to realize that she is capable of that now, fighting viruses. The blood tests from her lines came back negative and her nasal swab also came back negative. When the doctors run those tests at the first sight of a fever, they check for all the major big bugs to rule out anything serious. Bella took about 5 days of rest, Tylonol and extra fluids (via her Gtube) to get over what ever bug she had.
Before this visit our Immunologist doctor had asked if she could recommend us to be a family who tells their story for the Alberta Childrens Hospital (ACH) Radiothon. So a senior communications director of ACH contacted us to prep for being interviewed at the Radiothon. The Calgary Herald also found out about our story and wanted an interview for their paper as well. I didn't realize we were Front Page material!
Bella and I were in clinic awaiting her IVIG and RSV infusions when the reporter came to interview us, take pictures and hear our story. They masked, gowned and gloved to keep Bella safe. About ten minutes into our interview, Bella's Immunologist Doctor came in to update us on Bella's results from her recent Immune Panel bloodwork. It was exciting to share the good news with the reporter's team in the room with us both of us, hearing it all for the first time.
Bella's doctor had told us that Bella's new immune system, donor cells, etc are doing so well that we can begin to lessen her isolation protocols! For the first time in Bella's life we were given the go ahead to allow her to play with friends! When the Calgary Herald Reporter heard this for the first time, along with me, and realized what that all meant, she was just in shock. And from there, made it the focus of her article. We were exstatic!
It's such a weight to be lifted off my shoulders when I hear news like this from Bella's doctors. The freedom to rid myself of that worry is such an indescribable feeling. It's like another link from the stress chain, I can break off. Bella's doctors went on to tell us that play dates and mom groups are ok now, as long as the other children are not sick (of course) while Bella plays with them. They even said we can venture out to restaurants for family dinners, but we still must avoid highly populated areas like busy malls, waiting rooms, or crowds. And still no chicken pox parties. Haha
Since we have been home with this good news, however, we have yet to give Bella a play date with friends. But we are eager to start soon. We wanted to give her more time to make sure she was over that fever bug, and then we have been waiting for her friends in Swift Current to be healthy as well. All her future friends are daycare age, so it's a tad tricky to find a healthy, germ free friend in the middle of February. But soon!
On February 3rd at 8am we were able to share our story in support of ACH and all they have done for us after living in hospital there with Bella for 18 months!
So if I wasn't a tad nervous already, I then had to sit down beside Paul Brandt! He and 3 other radio hosts from Country 105 had a few notes about Bella and asked us questions about what we have been through and how ACH supported us, so intern, please support this amazing hospital. As much as I wanted to advocated for SCID screening to be implemented in all our provinces, the Radiothon wasn't the place for that. Also, the Calgary Herald already helped us with that angle. For the Radiothon we wanted to express our gratitude to the amazing, life saving Bone Marrow Transplant team, doctors, equipment, etc. That part of ACH is what saved Bella's life.
The interview was quick and of course I cried, cause I'm a sap. Lyle even tried coaching me a bit prior, but as happy as I am going in, it usually only takes one word to trigger my waterfall of tears...everytime. This time I think it was the tears in the female radio host's eyes that I caught a glimps of, that triggered mine. But it's ok, the stories that ACH families share are priceless and it is so needed. The donors that give so much to this hospital need to hear what their support truly means, and that will always involve happy tears.
I knew I was either going to ramble on and rely on Lyle to save me or cry, haha, so I write down a few notes to make sure I got out what I really needed to say to everyone listening that morning. Here are what I call "Bella's Stats."
When I showed it to the radio hosts their eyes widened with shock, as they saw the list of 30 some services Bella required at ACH.
"I know if I can get Bella's story out there more people will understand how much ACH needs support, how much this hospital has kept my daughter alive, cured her and made it possible for us to bring her home. I also want to say, for those who just can't give and it pains them to hear our stories and not be able to give to ACH, please know your effort to just understand what us medical parents and children have gone through, is priceless. It means a lot, Thank you."
I didn't get the chance to listen to our bit on air (they'll send me the link to our segment soon) but I sure did get a chance to listen to all the other families stories during the 3 days of Radiothon, and wow...
There were so many stories that were so immensly powerful. I honestly couldn't stop crying. Happy tears and broken heart tears. But this is not just ACH pump'n its tires, these stories are powerful because they educate people in huge ways. I learned an amazing amount about so many different diagnosis, procedures, family trauma, that I never knew about. It gave me a priceless connection knowing that so much of the pain Bella , Lyle and I endured was understood by so many already, in so many ways. And in a way, that helps me a lot. And then also hearing all the success stories similar to ours just gave me this boost of happy energy knowing so many more lives of children are better because of this hospital.
Hopefully I'll receive the links to our Radiothon interview and the Global Calgary TV interview we did aswell. Yes, that's right, we did 3 interviews in one day! Follow Bella's Facebook page for updates. :)
Facebook page link:
MAC Bug Update
The Non-Tuberculosis MAC bug that Bella was diagnosed with back in September is being treated by having her on 3 different antibiotics. We found out from Bella'a Infectious Disease Doctor that these 3 medications are to be 100% covered by a TB company that supports patients linked to this disease.
The MAC bug discovered in Bella's lymphnode back when they did surgery to test her lymphnodes for cancer, is a bug that you or I (with working immune systems) may actually have. But it doesn't affect us, cause our immune systems work. But when discovered in someone with no immune system or immune compromised, can be deadly. Bella was to be on these antibiotics for at least one year, once her new immune system is competent. So over a year on these meds...very expensive. To hear that they are to be 100% covered was wonderful news! Currently our pharmacists in Alberta and Saskatchewan are looking in to getting this all figured out for us and hopefully we'll receive back pay for what we have already paid. There is a chance that because we are in Sask. The one med may not be covered, but at least 2 could be. And I did confirm it was quite a miracle that the doctors discovered this MAC bug in Bella when they did, because untreated, it could of killed her. They found it by happenstance when they took the lymphnodes out to check for PTLD post Transplant. The fact that they also found this MAC bug at that time, saved her life.
I've discovered a lot about the coverage our province provides since we have been home, and it's not as good as Alberta. There are big differences, cost wise. So those medications I just talked about, all 3 are covered in Alberta. But in Sask. Maybe two are, and our pharmacist is jumping through hoops to figure it out. Also Bella's highly specialized formula, formula you can only buy from a pharmacy, not covered at all in Sask. Bella's dietician tried applying multiple times stating Bella's is still 100% reliant on formula via her GTube. But Sask. Denied our requests. Alberta Homecare coveres 100% of Pedialyte cost...not in Sask. And Bella requires at least 300mL of Pedialyte per day to help with her fluid levels and balancing her electorates. Pedialyte is a prescription for Bella because she can not properly balance her fluids given a few reasons. 1. She has no colon. 2. Kidneys recovering from BMT. And 3. All the current medications she is on. Without Pedialyte her potassium levels suffer and her sodium levels jump around. These can not be let into dangerous levels, they must be maintained with no major drops.
So I guess that's one little rain cloud amoungst our sunshine and rainbows. Ugh. But we'll do what we can for now.
Back to good news...
Bella is having surgery to get her Broviak Central Line taken out! This will be Bella's 10th surgery, but it is a very good thing. She has had this line (that they use for all blood work) since March 2015. It has served her well, but she is so much better without it.
So what does it mean to get this little sucker out?!
It means I don't have to tape half my daughter's body with Saranwrap and waterproof tape for her baths! It means no more stress and worry about horrible, deadly infection stemming from the line like the one that almost killed her and sent her into 4 sepsis attacks last March. It means I can take her swimming and actually go to mom and tot swimming lessons with her! It means no more paying for all the expensive supplies that go along with having a CVC line sewn in your chest! Very good news.
Taking this line out also means that Bella will have to go back to getting poked for blood and infusions. However, after much discussion with Bella's doctors, the risk of leaving this line in her chest is way way too high for infection and so even though Bella has bloodwork more than once a month right now... She is progressing and is way better off with a few more pokes than risking leaving this line in.
I'm sure I will bite my tongue on that the second they have to poke a needle in her arm, but I know and her doctors know she is progressing towards less and less bloodwork, which in turn will mean less and less pokes.
I've also received some very helpful tips from other parents who's kids currently need to be poked for blood work and I'm sure it will all be better than leaving that CVC in. I plan on making a pre-poke package to help Bella, containing everything that could possibly help her through getting a poke for bloodwork. Please send me more ideas if you have some! So far I know it will help to make sure she is quite hydrated prior. I remember the blue band they tie on hurts her, so I'll remember to dress her in a loose long sleeve shirt so the band does not pinch her skin. We can ask the nurses for numbing cream prior to the poke on the poke site. And of course a reward for after, to help dry those tears. So far I think stickers or her current favourite treat...French Fries will hopefully help.
I do know, I may be going back into that hard shell of mine who finds it extremely difficult to hear about your healthy child getting their once a year flu shot and how horrific it is for them.
Between the 3 Broviaks (surgery to place and remove this type of CVC) and 2 attempts at PICC lines in Bella, that all took place in Sasktoon RUH within the first 7 months of Bella's life...
She endured hundreds of pokes. Hundreds. It was horrible and too painful to go on and tell you where I was going with that information. I'm just going to leave it.
Genetics
More Good News!
We are very very excited to finally meet with our Genetics doctor come March 1st. She emailed us last week stating the second round of testing they did with Bella's old blood came back with a result! This means they have found a promising second genetic mutation that could mean confirmation of a diagnosis with Bella and in turn allow us to try for having a second child through PGD and IVF. No... Not part of the next X-Men movie. We are very excited to get the details from our Gene doc when we meet with her in person. Stay tuned. :)
My curiosity started when she began playing with her foam letters and calling them by name as she held them in the air. At first it was, "Momma, a B!"
And I thought oh, ok she knows one. Maybe she saw it on Super Readers cartoon today. Then, "Momma, an R!"
Yep, she's holding up an R...hmmmm, is this coincidence?
This happened more and more. And so of course the teacher in me got very excited and I needed to test her knowledge of all the letters. We started singing ABC's and looking at all the letters around her play table as we sang. She would want help drawing the letters on her Elmo ABC app on the iPad. That was huge cause all she ever did on that iPad was Toopy and Binoo cartoons. Now, straight to Elmo's ABCs writing. And now, she knows 17 letters, all on her own! The letters she knows are: a,b,c,d,f,i,m,n,o,p,q,r,s,t,u,w and x)
During Bella's February clinic visit we finally were able to drop off our Thank You to Unit 1. (The Unit where Bella had her BMT). I was very happy to finally find a way to express our thanks to all the nurses, doctors, specialists and staff that made this unit Bella's home for her. The staff there made the unit for Bella and I, a happy place where you would expect so many tears, they made me laugh amoungst heart breaking stress, they made it possible for Lyle and I to bring our baby girl home. How do you even begin to think any 'Thank You' will be good enough. I hope what I made for them shows them our endless thanks for all they have done.
Although so many moments have a specific Unit 1 person, nurse or staff connected to it, I made them generic so that even if it wasn't that specific nurse that was a part of that memory, the nurse that does read it knows what her and her colleague have done for us and probably other families as well, that means so very much.
Here are just a few more examples of what I wrote on the cards:
Please try to find out what your community is doing for Rare Disease Day, and if the only way you can show support is by wearing jeans, that's great too. Wear jeans for Bella! There are many sites that can help you learn more about Rare Disease Day: Global Genes, the Rare Disease Foundation, and Rare DiseaseDay.org.
Telemiracle 40!
Telemiracle is a HUGE Saskatchewan charity that supports Saskatchewan families needing medical assistance or equipment. The Kinsmen have supported my family in big big ways for Bella and all her medical requirements and we can't wait to give back to them and show our appreciation. That's right folks, we are doing another interview! But we are happy that this one is in support of our own province, Saskatchewan. CTV will be coming to our home before Telemiracle airs, to record our video testimonial. We of course can not travel to Regina and be a part of the big stage show, as much as we'd love to do that, it would be too risky to have Bella amongst that large crowd of people. So Telemiracle's filming crew from CTV are coming to us! Stay tuned for this awesome video of me crying again...just kidding. We can not wait to help support Kinsmen and share our story so that more and more people understand what this amazing foundation has done for our province and families like mine and our Bella.
Please support Telemiracle 40 in Regina, March 5th and 6th this year. And stay tuned for our Video Testimonial. :)
