Bella's First Summer at Home

Bring on summer fun, family & friends! 

Today: Monday July 4th, 2016, Day +466 Post BMT (Bone Marrow Transplant)

We are finally enjoying HOME after Bella's 3rd long term hospital stay.

Away from Home Recap:

1st long term hospital admission: Bella's birth on Dec. 6th 2013 to Sept. 8th 2014.

2nd long term hospital stay: Oct. 15th 2014 to December 13th, 2015.

3rd long term hospital stay: April 5th 2016 to June 8th 2016. 

Totalling: 580 Days in Hospital

(Well... That's a nice round number. Cue massive eye-roll) 

Bella is now 2 and a half years old, 63cm tall, 15lbs and 100% mighty. 

Bone Marrow Transplant Success & Immune System Update:

Bella's BMT remains 100% successful and has cured her from SCID! Her Tcells remain at 100% donor and can fight viruses. Her Bcells are still in recovery after her recent need of steroids from a Hemalytic Anemia relapse back on April 7th, 2016. Bella's Immune System is still learning and growing, but working! We wait for her Bcells to recover before we can look at starting her vaccines and immunizations like any normal, healthy baby would receive from birth. Hopefully this can happen for Bella soon. We will know this information in hopefully less than 1 months time. 

The steroids Bella was on (has been off of for 2 weeks now) remain in her system for roughly 6-8 weeks. They skew her immune panel results, so Bella's immunologist is still unable to see what her true immune function is. So we wait. Her Bcells are recovering and are currently sub-optimal. They need to get to normal range before they can test function and determine when Bella can begin to receive her immunizations. Therefore we wait another month and return to Calgary for a large immune panel blood test. 

Isolation Protocol: Because Bella is still slightly immune compromised from being on steroids, we continue to protect her from anyone who may be sick, or not vaccinated/immunized. She could fight a cold but we still refrain from purposely putting her in a position where she may catch one. We also keep her protected because Bella is unable to receive her own immunizations & vaccines at this point. This means she is not allowed to be around babies under 1 years old who have not competed their immunizations. She is not allowed to be around any child over 1y old who is unvaccinated and she can not be around any child/person who has received a recent live vaccine due to the fact you shed those vaccines for roughly 2 weeks after receiving them. 

Hemalytic Anemia Update:

We are in constant prayer that this remains behind us now, so that Bella never deals with this ever again. Why did this happen to Bella, and why did it happen twice? First off, her BMT doctors have told me this can be a rare complication from having a BMT. Just having to do with the way her Bcells learn how her new immune system should work. The Bcells were stupid and instead of only attacking bacteria, they attacked everything, including Bella's red blood cells causing her HGb to drop so drastically. Bella's doctors did NOT expect this to happen a second time. But it did, and worse than the first. So April 7th Bella received steroids once again, and blood transfusions. The big steroids knocked out ALL of her Bcells (because they were being stupid) and essentially we hit the restart button on her Bcells. We pray they have now had enough time and teaching from her Tcells to come back in smarter, and not attack her own red blood cells again. 

Hopefully you're all keeping up with this science lesson ok. Remember, I am okay with questions now. I feel much more equipped to answer them. Please use Bella's Facebook page to ask questions. 

Her Facebook page link: https://m.facebook.com/Isabellas-Mustard-Seed-848573408556136/

In a nut shell, the relapse of Bella's Hemalytic Anemia has been dealt with. She is done steroids, her HGb has remained stable above 110 and she is off more medications. But, for me, fear and high anxiety remain. I'm not saying I'm doubtful, but I'm on alert. And when you need to be on high alert for months on end, it is truly tiring...mentally and physically. 

Given the time line of her first relapse, we could say I need to be on alert for at least 4 more months. Watching her HGb levels weekly, cleaning her cvc line diligently, watching Bella's color and energy levels, praying a 3rd relapse will not occur. Which her doctors have reassured me they do not expect, based on how well Bella's system reacted to steroids this time. 

But this is all why I had to give up my job, my full time permanent teaching position...to remain on high alert for my daughter's safety and health. It's so hard, but we are pushing on in faith and so many good things are happening right now. 

Recent Victories!

I usually use my blog as an overall update on everything with Bella and I use Facebook for quick updates, pictures and videos. So hopefully many of you follow Bella's page on Facebook to capture our day to day victories, but if not, here are a few she has accomplished: 

1. Starting in May 2016 at 2 1/2 years old Bella has learned to drink! In a bittersweet way I believe the 6 days she was forced to be NPO (nothing to eat or drink) during our recent hospital stay, forced her system to crave this skill. On that seventh day she was only allowed liquids and she definitely took advantage of that, and thus, her consistent drinking skill was born. 

She can drink all fluids she requires in a day. (800 mLs) We are mainly having to only use her Gtube button for medicine or when she has sick days for fluid maintainence. Bella continues to eat all of her calories and she has kept up with this victory since she learned how to eat at 1 1/2 years old.

2.  Bella is climbing like a super monkey! She is going up and down stairs like a boss and with much confidence. She can climb up and go down small slides all on her own. 

3. She is off way more medications. Hopefully off ALL medications come September. 

4. She enjoyed her first kiddy pool swim in a bathing suit. (First picture of this blog post)

5. She has been on her first boat ride in a lake! This is special because we have always called the baby scale in the hospital a boat...but now she knows what a real boat ride is like. 

6. Lastly, she is beginning potty training! 

I thought she was ready about a month ago when she increasingly became upset with her dirty diaper. But after being through so many bowel tests and issues in May I waited to try training. Within the last few weeks Bella has started to run up to me after she poops and say, "Mommy I poop'd!" Or point at her bum and say, "Mess!" Which is utterly adorable and hilarious. She has also, for a while, greatly enjoyed passing gas really loudly and shouting, "I toot! I toot!" ... I really need to get that under control before she goes to school. Haha. But hey, when you have a child with Hirschprungs, those toot victories are everything. 

Bella's Bowels Update:

Looking back at our most recent hospital stay from the Hemalytic Anemia relapse, Bella's stay in hospital was extended because of the horrible tummy troubles she had during the month of May. Her doctors speculated high dose steroids being the culprit but there was much confusion and termoil around what was actually happening with Bella's sensitive bowels causing her drastic distention and pain. Bella's surgery team was first up to bat. They had to rule out serious issues from a surgery stand point before anything else could be done. If you followed on Bella's Facebook page, you'll remember the pain she had went through for all that testing. The numerous X-rays, straps, enimas, rectal exams, medication, tests and trials. It was horrible, and it broke me down, just like all of her bowel issues and surgeries from ALL of 2014. 

But this put me in to warrior momma mode and I sought information and help while surgery had to do their thing. And while we had to wait on a GI consult. 

Without pumping my own tires too much, I must say, Lyle and I figured out Bella's tummy troubles and how to manage them, on our own, with help from a few other medical parents. And once Bella's GI doctor got involved, he completely agreed with us. Problem is...we didn't get paid like he does. (Cue, second large eye-roll)

Anyway, this is what we figured out. SIBO (Small Intestional Bacteria Overgrowth) 

Bella has no colon. It was taken out due to her having Hirschprungs (the dead cells that affected her whole colon caused a blockage). Bella had an ostomy for 8 months and miraculously received a surgery that reconnected the end of her small bowel to her rectum, enabling her to poop normally! We were celebrating the fact that Bella would go as far as to only poop once or twice a day and pass thick normal, formed stool. (BTW sorry if this is TMI for you. But you'll understand soon.)

But...Celebrating this stopped, once we realized how SIBO affected Bella.  It is better for Bella to poop more than twice a day. And it is better when her poops are gassier, and much softer. In Bella's case, more pooping and softer pooping does not mean she is sick...its means her bowels are comfortable and at no risk of SIBO.  In Bella's case when any trigger causes her to be "backed up" or even slightly constipated...SIBO can begin very quickly in her case, because she has no colon. Causing massive distension, bacteria overgrowth, gas build up, and pain. Which is very hard to get rid of.  

So when you do not have a colon, you do not have a storage tank for your poop. The colon can manage the bad bacteria. So where does Bella's bad bacteria go...directly to her small bowel. The steroids caused Bella to be constipated and triggered the SIBO. So with no colon the bad bacteria takes over Bella's small intestine causing an overproduction of gas, bloat and pain. Once Bella's GI specialist heard that this is what we believed was happening, he promptly agreed and helped us with the best forms of management for Bella. Because the pain and bloat was so bad for her we needed to start with a antibiotic called Flagyl. We were also told to start Bella on the FODMAP diet. This includes Gluten Free, Lactose free and no foods that cause fermenting (gas build up)  in the bowels. This diet alone was a huge adjustment for me more so than Bella. She has blessed me beyond words with being such an adaptable child. She'll try everything at least once, and even surprise me with a new favourite food she likes almost every other week. We also have Bella on a constant dose of probiotics (good bacteria). So far this is all helping, a lot, but Bella still has had "bad tummy days." Thankfully we have not needed to go back on antibiotics and have many other ways that help manage her tummy while her body continues to rid the steroid from her system. 

Looking at the Summer Ahead

This is Bella's first summer at home! Can you believe it?! We were hoping for less trips to Calgary for her check ups and IVIG, but I revcieved the call today from her specialists, telling me that because of her Bcells still needing time to recover, they can not test her complete immune function yet and we must come to Calgary in one months time, again. The news we are hoping to hear soon is that Bella's Bcells have fully recovered and do not come back with any "memory Bcells" in term causing any more Hemalytic Anemia problems. We also want to hear that Bella's system is making its own Immune Boosters (IGA's & IGM's) Once this happens they can trial Bella off IVIG, watch her levels and hopefully she will no longer need IVIG infusions. This would also mean less trips to Calgary.

For now Bella's first summer at home will still involve: a cvc line in her chest, blood tests weekly, Calgary monthly and a continuation of 3-5 medications. But we will work around all that, we will adjust and make this her best summer yet! She's finally home! 

Bella is due for a MRI and CT come September. We are hoping for these tests to show great news to end our summer with. The MRI and CT will be used to look at quite a few telling facts about Bella's lymphnodes. These tests will also be used to tell us if Bella can come off of the MAC bug medications she has been on for a whole year. They will also use the MRI to look at the nerves in Bella's right hand/wrist to see if they can figure out any more knowledge about why she has limited use of that hand and weather surgery could help restore her wrist/hand function. 

My main focus looking ahead at this summer is Family Catch-up. I have constantly been struggling with the stress and anxiety that has come along with all the TIME I have lost with family while living in hospital with Bella. It eats away at my mind.  I want that time back! ...so badly. It's so difficult for me, having Bella's medical requirements, to just pick up and go. We can't do that. Along with trying to catch up on time, I feel held back by all the continuous needs of packing for Bella, remembering all her meds, her 'just in case' meds and supplies, emergency kits, no one else knowing how to use her cvc line & Gtube lemergency kits, and on and on and on. I'm struggling with this anxiety a lot lately. I mentioned this a bit in a previous blog post and I'm still having issues with it.

 Try and imagine a sailor (they swear a lot), with cement boots on, in a thick mud puddle with a backpack twice her size strapped on her back, holding her child while she struggles to reach her sinking ship in the distance. That's me, everytime I'm packing to leave the house with Bella. 

Time is precious. 

Recently I've added to my support system! I have finally found a doctor for me, that's right, me...just me...finally. I have not been able to see a doctor for myself since before Bella was born. My c-section was my last interaction with a doctor, for me. 

Fast forward to this week and I am beyond happy with my new doctor. He is wonderful and everything I need for all that is 'Kyla's medical needs.' It's a huge relief. 

Genetics Update!

Our amazing Geneticist (Dr. Billie) in Calgary has worked so hard to confirm that both Lyle and I are carriers of the same gene sequence that causes CHH linked SCID. Up until this past month they could only find the CHH causing gene in me and not in Lyle. This made things difficult because it just didn't make sense and without finding confirmation of the gene in Lyle, we would not be able to move ahead with PGD IVF in order to have a second child without the deadly disease. 

So they found it!!!! In a nut shell, the lab who did the initial testing was not experienced in looking for this gene. Which our geneticist told us was a small gene and should actually be easy to find. So given Bella's clinical diagnosis of SCID, Hirschprungs and presenting in other physical ways as CHH, it was obvious that she had CHH but we needed Lyle's gene to be found in order for us to receive PGD IVF.  CHH is an autosomal recessive condition where both copies of the RMRP gene need to be affected for there to be disease. So in order to have CHH (like Bella does) it's because she received one affected gene from Lyle and the other from me. What are the odds of this happening again? A 1 in 4 chance for our next child if we conceive naturally. 

Because Bella's CHH is linked with the deadly disease SCID, this is not a risk we will take and instead we will use PGD IVF to ensure our second child does not need a BMT to survive. 

It's difficult making this decision. Suprisingly there's no support from our government. I wish I could make the plea that given proof from our doctors that we need PGD IVF to ensure our child does not have SCID... You would think the government could financially support this for us. Versus: we risk it and cost our health care millions of more dollars for a child needing a year long hospital stay for a BMT. 

 I have been asked many times and in turn asked Bella's specialist..."What are the odds?" What are the chances I find the love of my life (Lyle) and our love means our unique gene make up causes a deadly disease?! How devastating is that? It's heart breaking and I think about it every day. Every second I see Bella playing alone and wish she had a sibling, right now, playing along with her. And that thought shatters into a million pieces because the love of my life happens to be a carrier of the exact extremely rare gene mutation that I have. What are the odds? Well, our doctors can't explain that, our geneticist can't explain that. It's so extremely rare that they don't know the odds. I mean, it took years to understand that Bella, having Hirschprungs can be apart of having CHH, and SCID can be apart of having CHH, but does she have CHH? It was a question for so long. But now that it's confirmed and we realize she was born with all 3 of those extremely rare conditions... WTF are the odds, right!? 

I had an excellent convo with Dr. Billie at Bella's last appointment in Calgary. And although we knew for quite some time this would get confirmed eventually, she agreed this news from the lab is like closure for us. The searching is over and we can move ahead with plans for baby number two. 

Enjoying home on our acreage has been absolutely lovely. Bella enjoys wagon rides through our whole coulee. Lyle mowed a twisting and turning path that allows Bella and I to walk through the whole 10 acres. Now that Bella is more agile and tolerating grass, she is willing to walk on the paths as well! She used to hate trying to walk through thick grass, it was quite difficult for her. If she fell she would sit with her hands in the air, not wanting to touch the ground and could actually stand from sitting without touching the ground! Quite impressive. Now, she can stomp along rough terrain with no problems. She loves being outside. 

Links to Our Lives

I absolutely love SnapChat. If you understand or use this app on your cell phone, you'll know what I'm talking about. The main reason why I like it is because it uses photo and video you can share with others, without making you save a photo and clogging up your device with a large amount of photos. I also love SnapChat because it's about being in the moment. I want to worry less about saving this photo, or saving that video, or spending money on devices that save all the thousands of photos I take.  Sometimes it's okay to have a fun moment captured, and let it go. Memory. SnapChat is like that. 

It's also so much fun using all the funny faces the app has and I love to make jokes. Life is better when you're laughing! If you are a snapchat user, you can follow me @kylakcco. 

In May I was asked to be apart of a promotional video commercial for the Calgary Ronald McDonald House. You may have already caught this on my Facebook page but I'll add the link to the video on this blog post as well. These commercials were made by a Calgary film crew, to be shown in Calgary Cinemas/ Movie Theatres to promote support for the house. Once the initial commercial was made, the crew kindly approached me and asked if I would mind doing an interview commercial as a second video for the house. It worked out so well. During one of Bella's naps I was able to talk with the crew and share how this house held me up when I was broken by my daughter's medical needs and hospital stay. As hard as it is to share the pain in our journey for Bella, sharing our story means more support for RMH.

Here's the link:

https://youtu.be/hMJFjq8cyY4 

Family photo at my dads cabin.

Bring on the Best Summer Yet! 

Life Throws A Lot Of Lemons

Monday May 2nd 2016 

Day 568 in Hospital

Day +402 Post BMT

Last Blog Post Was: March 16th

When Life is done throwing it's hailstorm of lemons at me, I'll be ready with one hell of a party.

I'm not losing my faith but I am starting to question weather 'catching a break' is even something that exists...

It's kind of like when people tell you to relax and you know that in the history of all mankind, no one has ever relaxed when told to relax.  I have had so so many people say, "My God...when are you going to catch a break." Ya, I'm not so sure that exists anymore. The waves of set backs have been relentless. We've been LIVING in a fricken hospital people. Who else in this world lives in a hospital this flip'n long with set backs?!

 We arn't supposed to be here. 

So, I'm realizing the break is not coming. I've done my kicking and screaming...that just makes me more exhausted. So without hardening my heart, I've realized I need to suit up and just keep fighting this battle until the war is over. There's no 'breaks' in war. You fight, fight, fight as long as it takes until it's all over, or your dead. I'm not about to keel over any time soon, no matter how warn out I am. So I'll suit up, try to make or find what helps me, and keep going. 

What has helped me the most is knowing that no matter how great my pain is, seeing what Bella has to go through, I am finding that the pain subsides faster, when I see that I have still been able to help another mom or dad with similar angst. 

During one of the worst nights in a while (last Thursday night) I thought of something that I knew would help me get through the next day a bit easier. There was a lot I was feeling and just couldn't put into words. Then I finally was able to. During my sleepless night with Bella I made this note, that I knew I had to share:

There have been countless days, nights, from day one in Saskatoon hospital that I have been unable to tell anyone what I need, let alone find air in my lungs to speak because of the mental, physical and emotional exhaustion. It's really the worst question to ask when someone has been through so much. I knew at this point it didn't matter anymore if I sounded cold or bitter when I have replied, "don't ask me that." Or just given a blank stare. People need to know that although they mean so so well, they need to find another way to comment or help a person in such distress. 

From the night I posted this note I have had an overwhelming amount of medical moms thank me for putting something out there they wanted so badly put into words. And although I'm in a lot of distress tonight after the day Bella had, a huge chunk of that pain is gone because you messaged me, and let me know this helped you. Thank you. 

No matter how many of these doors we have to walk through, we will win this war and come out victorious. 

And I need to add, Bella's nurses, doctors, specialists, hospital staff, RMH staff have been amazing though this all. 

After only being able to enjoy being HOME with Bella from Dec. 13th, 2015 to April 7th, 2016 (a short 4 months) we are back in Calgary and here until June for sure. 

We never got to our once a month pokes for blood work. March totalled out at around 10 pokes for Bella and April, well... She had 11 pokes within 2 days. It's breaking me. This list of set backs after what she has already been through and now all this. I have no words, it's just breaking me. 

 >> Our Record Hailstorm of Lemon Flavoured Set Backs:

1. Bella unexpectedly re-admitted into hospital due to relapse of Hemalytic Anemia - April 7th

2. Many needle pokes only after having her Broviak line out for 1 month.

3. Scary wait on 2 blood transfusions and blood matching.

4. Surgery for PICC line that did not work after one day.

5. 2 surgeries putting her total at 12.

6. Surgery to get Broviak because PICC never worked.

7. Line in her chest, line supplies, taping her up for baths, no hope for swimming this summer, dressing changes.

8. Long term treatment in Calgary

9. IV lines, IV pumps, beeps, monitors, sleepless nights. 

10. More medications (From 5 to 14)

11. The cost of medications, line supplies, line care, being away from home, again. 

12. NPO (Not allowed to eat, I'm not allowed to feed her)

13. Giving up/losing my job.

14. Forced to postpone childcare when we do get home. 

15. Postponement of Immunizations and Vaccinations. 

16. Immune Suppressed again, isolated again.

17. Steroid effects on Bella's body.

18. And currently a whole pile of bowel issues that have come up and are keeping Bella in hospital. 

That's a lot of lemons. 

I have not had any time to update on this blog since March 16th. But I love that this is the main place I can bring it all together. However, these 18 setbacks all have a list of their own 'side setbacks' attached to them. I don't have the time or energy to list anymore. I hope that many of you have been able to keep up on Bella's Facebook Page. I have gone into more detail with each issue, in the moment, on there. 

Link to her Facebook page >>

https://m.facebook.com/Isabellas-Mustard-Seed-848573408556136/

I also have tried to keep more positive pictures and videos on Bella's Facebook page as much as possible. Otherwise it would have been quite a dreary, angry page since the beginning of April. I've been trying to find time to write this blog post because there's been so so many moments when it would not be a good time to start typing. I have had many moments when I probably would have broke the keyboard by typing with so much anger. But tonight has proven to bring some relief, enough to type. 

Giving Up My Career

This set back hurt, a lot. I love my job, I love teaching. I am a Special Needs Teacher. I fought hard to not give this up... But Bella needs me, she comes first. 

Right before April 7th, things were looking so so good for Bella. Her Bone Marrow Transplant has been a full success. In all of this hailstorm, she has had a successful BMT and that is really what counts the most. 

Things were looking so great. She did not have a central line anymore in her chest, she was on less meds that would look to be gone by September and we were beginning to plan childcare for Bella so I could return to my full time position as an SST Teacher come fall. I had (still have) the most amazing support from my school division (Chinook School Division) I had my job to come back to and constant support from many many colleagues since Bella was born. I had juuust told my boss, we were ready, I could return to work. 

And then April 7th happened, and 8th, and 9th...and then I had to ask what I was avoiding, dreading... " What does this mean for Bella's care? When can we go home?"  I didn't want to have to ask that. I knew just having to ask, meant an answer we wouldn't want, "We don't know." 

So how do you plan to go back to work, when your daughter's specialist doesn't know how long her treatment will take, if this will happen again. You can't. 

After 3 weeks of hoping this was a nightmare we'd wake up from, Bella's doctors gave me the upsetting news that forced me to give up my job, my position that I worked so damn hard for. They told me Bella would need a central line, to test her blood daily and then weekly and for a long time, months. They said the good news is she didn't need a big drug (Rituximab) that knocked out her B cells (like the first round from Oct. 2015 - Jan 2016) But the bad news is they don't know how long the ween of the steroids will take. And that could possible take until July. And then they told me there needs to be at least a 2 month wait period, once she's off steroids, to make sure the Hemalytic Anemia doesn't come back a 3rd time. So that brings us to October. 

So best case scenario she could possibly be 'out of the woods' by October, but we can't say for sure. We have to hope week by week that Bella's HGB stays above 100, proving the anemia is gone. And regardless, come October, she would still have her central line sewn into her chest. That alone is a big reason why childcare will not be allowed until that is out. And trust me, after the hellish amount of pokes Bella endured in March and April, I will not be rushing to get this line taken out. 

As hard as this has been. The positives do remain. And boy am I hanging on to them tightly. Bella's transplant is a success. It has not failed in anyway. The Hemalytic Anemia is a rare side effect of having had a BMT. Also, Lyles job as been very supportive, Bella is growing and learning, we have many caring, supportive family and friends. And I will get back to my career, and teach again at some point.  I can't thank you all enough for all you have done for me and my family through all of this. 

Where is Bella at now?

Well it's the second day that I have been working on this post, so it's May 3rd now. At this moment I have not been allowed to feed my child for 5 days. Since we were re-admitted on April 29th, Bella's doctors have been trying to figure out what is going on with her bowels. Given her extensive bowel history (Hirschprungs, Ostomy, Colectomy, Resection, 5 major bowel surgeries, etc) There are so many factors in play right now, that they need to rule things out before they treat. The worst part of this has been her unknown pains and not being allowed to feed her. Each morning she wakes up hungry (because she's on steroids to fix the Hemalytic Anemia) and I need to try all day, to help her understand why I can't give her all the foods and drinks she's asking for. I have no other words for this but heartbreaking. 

What has been extremely difficult for me is the horror of all the previous bowel issues that went on for Bella's first 8 months of life in Saskatoon before Bella came to Calgary and it was all resolved. This week has meant conversations with Bella's doctors about the tests they would need to do to figure out if Bella has any sort of blockage that has been causing this distention, discomfort, ups and downs, and confusion. I never EVER wanted to have those conversations again. Bella's bowels have been working so well since her last major bowel surgery back in July 2014. 

This set back has brought back a horrible amount of pain for me. It's just indescribable. Bella has been poked and prodded for procedures, X-rays, enimas, tummy measuring, etc. She's so smart now even her short term memory is proving not so short. She remembers a lot. We are way past the point of comfort from people telling me, "oh she's a baby, she'll never remember this." 

No, she is now, and it's horrible to see her cry with worry when I simply lift her shirt or lay her down to change her diaper. She thinks something is going tohappen  to her, or pain with happen again.

Today, things are looking better. Many tests have been done on Bella since Friday and they are ruling out any blockages or partial blockages. I have felt from the start that this is a motility issue from being on high dose steroids for so long, and they are slowing her sensitive gut. As much as the doctors agree with me, they must rule out any blockages before giving Bella a motility agent. Things are looking clear and positive so far, so I'm impatiently waiting to start her feeds again, and let her eat. Praying this happens either by tomorrow or by Friday. 

iPad helping pass the time on isolation in hospital. 

The Hemalytic Anemia

To recap on this set back that occurred on April 7th...the doctors did not expect this to happen a second time. This was a real unfortunate relapse. They have seen Transpant kids get it twice, which helps them figure out how to solve it...but it's been a real harsh reality that came about.

It was quite ironic, to say the least, that the relapse happened here in Calgary, just thinking we were in for her regular monthly check up. I fully believe God was (as he always is) protecting Bella because this would not have been ok if we were home or anywhere else. It would of been a scary air ambulance ride. 

  So Bella's B Cells are misbehaving. They need the Tcells to mature more to teach the Bcells what to fight and what not to fight. The Hemalytic Anemia came about when her immature, dumb Bcells "miss took" her red blood cells for bacteria and attacked everything, breaking Bella's red blood cells and causing her HGB to go from normal to  50 to 39 to needing 2 blood transfusions. 

We are happy that the steroids have been working to fix this and those positives remain. The steroids slow down her B cells and give the T cells more time to teach them what to do. We pray that no memory B cells remain. We don't want those dumb Bcells to remember that attacking her red blood cells was a good thing. Although Bella's doctors thankfully have not seen a 3rd relapse in any of their patients, they will always say there could still be a chance. So we hope and pray that when Bella is weened off the steroids, the Hemalytic Anemia is gone for good. 

This all happened right when we were begining to test Bella's cell function. Now that is put on hold. Essentially we have been told to wait another year before attempting to test Bella off IVIG and see if her system is ready for Immunizations. Even if everything looks good in October, they never start those tests in the risky Winter months when lots of infections and viruses are flying around. 

This is another big set back that has come as a real hard blow: Bella remaining immune suppressed because of the steroids. And although we can try our best to screen people, friends and family that want to see her...this world and its recent issues with parents that don't vaccinate, immunize, etc...makes our lives, Bella's life, harder to live in peace and not be scared to go out.

Between April 18th - 28th Bella was discharged from ACH and able to enjoy life at the Ronald McDonald House. She is absolutely loving the piano lately, the playroom and playground outside. She loves that she's big enough now to climb the stairs to the slide all by herself! While she was out, she loved eating all the wonderful meals and brunches made by the Home for Dinner groups. When it's time for bedtime, she has been loving story time. And lately, wants many books, (full stories) read to her before bed. She's sort of at that stage where she likes to "get out of having to go nyny." During this week we were also interviewed by a film crew that is supporting the RMH by a commercial they are making for the house that will air in some Calgary Theatres. I was given another chance to speak as a family of the house and elaborate on all the wonderful ways this RMH supports families. Hopefully I get a copy once the video is complete and post it to Bella's Facebook page. 

Bella was able to enjoy home from Dec. 13th, 2015 (just turned 2 years) until April 5th 2016. During this time she was off isolation and able to be with friends! She was able to finally play with all 9 of her Thomson cousins, together and healthy. She was loving the outings at home and all the fun things that come from living on an acreage. And of course the copious amount of time with Grandma and Grandpa. Bella made it through the winter without getting any viruses! I came down with something at one point (which has like, never happened in 2 years) and I did what I could to protect Bella while being her only care provider, and she never caught a thing. Thank God. 

Bella celebrated her First PARTY Ever on her actual Transplantaversary on March 25th, 2016. That Friday was exactly one year post BMT for Bella and it was wonderful. 

Today is Day +404 post BMT. 

We had many family, friends and their little ones come and play with Bella and just have fun. It was overwhelming to think about how to plan this party for Bella, and I was so relieved with all the support and how well it all went. Thank you to everyone that could make it that day, and show how much they love Bella. That meant so much to Lyle and I. Thank You. 

Side note: the cute picture of Bella crying is funny because she was crying because  she didn't want cake...she wanted toast. Lol

Photo from April 11th 2016.

Thank You

This ALL has been overwhelming. I feel drained to the core but so many of you are still standing with me, filling my cup back up, Thank You. 

To Bella's Nurses: A special Thank You from Lyle. Please know that you mean so much not only to me and Bella, but to my husband. He feels less anxiety, stress and worry knowing that you are there for me and all the love and protection you have for Bella. You mean so much to us. It's bittersweet to be back in hospital, but having all of you by my side brings Lyle a bit more peace when he can't be here. 

To All My Family/Friends: Thank you all for knowing what to do, and helping me through. Everything you have all done, helps me. I can imagine it's hard to see my posts on Facebook and then feel helpless. But please know, I type those in the moment because I am scared. And just knowing that you all read and see what I am going through, is enough. It's enough to give me peace of mind that my friends/family are aware. You tell me in many ways how you are aware and that helps me so so much. Thank you.

To My Medical Moms: Thank You for 'getting it.' Your understanding is like no other and all your helpful tips. You are all a special part in my life that can never be replaced. You have helped me in ways that I can't even explain all my gratitude for. I'm never going to be saddened by having to live this life with Bella, because she is going to be ok and when things are not ok, I have you amazing special moms by my side, holding up the shields that block the lemons. 

Just Relax, Figure It Out, Try Again. Day +357

Today is Day +357 Post BMT (Bone Marrow Transplant. Yes! Her 1 year post transplant day is coming, her Re-Birthday will be March 25th 2016.

Today is also Day 95 since we have been out of hospital and at home.

Those words in this post's title are what I have found myself needing to say a lot to Bella lately, when she gets frustrated and sort of "Hulks Out" like I do when things don't work out. I need to start taking my own words of advice I give to my daughter, and try them for myself. Apart from this month going exceptionally well for Bella, I've had some of my own struggles weighing on me. But, we'll get to that later. For now:

Just Relax, Figure it Out...Try Again. 

Bella's Progress >> Gravity Feeds

This big step towards being backpack and feeding pump free is a huge step that daddy helped Bella with. Bella and her bowels have improved a lot and are not as sensitive as they once were, so now she can take in her needed fluids with quick gravity feeds instead of having to be hooked up to a feeding pump. The pictures above show me accessing Bella's Mickey Gtube button to hook up a  short feeding tube to and then pouring in her needed fluids. (Formula, water or Pedialyte) This (unlike the pump) mimics more of the natural way we take in fluids like drinking a large glass of water by mouth instead of sipping on it for 20-30minutes. Bella's gravity feeds are going so well because she really only requires "top up" liquids because she is eating all of her calories by mouth. Because Bella can't gulp down her required 800ml of fluid in a day, being able to top up her fluids with gravity feeds this way is very freeing. Bella's drinking skills have improved but she is currently only able to drink about half a cup of water during each meal. (sometimes less) Bella requires at least 400ml of water and 400ml of Pedialyte in a day when she eats ALL of her calories that trump her formula need. This of course is an excellent accomplishment for Bella, eating so well. Her dietician is so happy with her eating a large variety of foods as well. Veggies, fruits, grains and meat....she loves many kinds of all of them. When Bella eats this well, it saves us a lot from the huge formula cost. But she's not at an age where I can reason with her yet and explain to her she must drink more water than the average kid because she has no colon and her current medications require so much water. So for now we are more than happy with her victory of tolerating gravity feeds, and we'll work on helping her drink more water by mouth when she's ready. 

Our last Calgary visit

Hotel, Clinic, Surgery

Those files in the pic are just a portion of all of Bella's ACH (Alberta Childrens Hospital) files and don't include her files from RUH (Saskatoon hospital). They have to bring them out at every surgery. 

I have SO many updates from Bella's last doctor visit in Calgary! I'm happy to finally get to this blog post, but we have been very busy at home and when I don't get any breaks because of what Bella requires medically, and hubby works so one income can support us right now... this blog gets put on the last of my to-do list. However, I need time for this, time to share. I need the support of others knowing what we go through and understanding. So thank you again for following, reading, loving and understanding. 

Ok, back to updates from last Calgary visit. March 1st & 2nd:

Adios Noodles

Aloha Pokes

I posted a video on Bella's Facebook page showing how well she came out of recovery. You can check out her video and more updates not noted on this blog, by going to her Facebook page: Isabella's Mustard Seed.

Click this link to get there:

https://m.facebook.com/Isabellas-Mustard-Seed-848573408556136/

Bella had surgery to take out her Broviak. These lines (or noodles as we like to call them) saved Bella from hundreds of pokes. She had this Broviak (I think the 6th she's ever had put in) for 1 year. These lines are meant to be in patients long term, that is true, even longer than a year can be ok. But for Bella, she is progressing, we are blessed in many ways that she is progressing so now in her case these lines posed more of a risk to her than a benefit. So they had to come out. 

Bella's first year in hospital and all the complications that came with it caused 3 Broviaks (6 surgeries/to put in and remove) and countless pokes to Bella in between those first Broviak surgeries. I wanted so so bad to never go back to that. I remember her being such a hard poke, and not just your average hard poke, I'm talking "Calling the PICU and NICU and Transport Team nurses and they still couldn't get it, so call the Anesthetist with the ultrasound machine to find a vein on Bella guy" hard poke. 

Ya... That hard of a poke.

I remember one of the hardest days ever (besides her Septic Shock days) was where they poked her 21 times. This was horror. And I hate myself for not being more of an advocate for her at this time but I did not know then, what I know now, to save her from that horrible experience. I didn't know we could call the NICU nurses, or try the freezing cream, or hold my ground enough to make them give her a break. Instead she was barely 2 months old, with bowels that didn't work and so dehydrated that if they did not get that IV in her that day at that time she would die. So they tried her hands, her feet, her elbows, her arms and finally her head. And if ever a day is harder to explain then that day.... Seeing her shake from the shock of so many pokes to try and save her life...I have no more words for that sort of pain. 

And so when I come to this point of trying to see this "poke saving Broviak" removed as a step forward... It's still extremely hard to see it as a good thing. 

So, Relax, Figure it Out, Try Again

And from there I came up with this for Bella to help her through her future pokes:

 All Done Pokes Kit

I was not about to let Bella's tears from pokes bring back all those horrible memories from her having to be poked before. I of course want to do everything in my power to keep her strong, brave and able to get through this. Having the luxury of a Central line in Bella for a solid year made me forget all the tips and tricks that help one deal with a poke for bloodwork. I did not want it to take even ONE single poke before I realized, "Oh, this would of helped, or that." 

With the support of many other parents in my Facebook groups I wrote down a list of supplies and ideas to remember for any of Bella's future pokes. And then of course the toy kit itself, to help end those tears after the poke and help her know she can get through this without worry or stress. 

My list of ideas is maybe hard to see in the picture so I'll type it out. Please share with any other parent you know that may have a child needing a poke:

>> Be well hydrated, request numbing cream on the site, wear long sleeves so the blue band they tie on doesn't pinch the skin, wear jacket and mittens prior, to heat the vessels to make it easier for the nurse to find the vein. If the poke is in the heal or foot, wear 2 pairs of socks. Hold heating pads or put hand warmers in the mittens/socks. Distraction ideas: iPad, ring a bell right before the poke, have a treasure box of toys ready, party blowers or funky whistles. <<

So now I make sure to carry this kit with me for every trip to the lab she must endure from here on out. And as hard as it is, we are going to hope Bella never requires another Broviak again, because that would mean things went wrong. 

As I mentioned in the previous blog post, part of Bella getting her Broviak out meant her new immune system is doing better and better (and it is) and that's supposed to mean bloodwork(as in pokes) should only be needed once a month now. Well, I'm not impressed with how the first month with no Broviak is going. One poke in a month has turned into 7 pokes. Her first week after she was home from surgery involved a lab error when reporting Bella's potassium level and that one poke turned into 3 pokes in 5 days. She has more blood work coming on Monday and then praying for a 2 week break only to look forward to 3 pokes needed in 3 days when we are back in Calgary. 

Why Does She Need 3 Pokes in 3 Days?

Part of the reasoning is good news...Bella's B cells are back! We received the good news today. The med that fixed her Hemalytic Anemia knocked out all of her Bcells. Which, by the way, was extremely bittersweet after celebrating a successful Bone MArrow Transplant only to have the important Bcells that we prayed so hard to come in and function with the Tcells to make Bella's antibodies...be taken away on purpose. 

Then we waited through the set back of 6 months and finally found out today that they went from 0-93%! So now that her B cells are back her Immunologist can start a blood test that we haven't done yet, the very important function test. This type of blood test can only happen on a Thursday and Bella's regular clinic bloodwork can only happen on a Tuesday. Also, the blood draw for all these tests would be way past her daily limit, so it has to be 2 pokes for bloodwork. So what's the 3rd poke? Well, Bella still requires her monthly IVIG booster infusion and RSV infusion and you need an IV for that. So after they poke her Tuesday morning for bloodwork, they will have to poke her an hour later to get an IV. I asked why they can't just use the same site and save her a poke. It is too risky to ruin the vein needed for the IV with the draw for blood. So they need to use a different site, a 2nd poke. 

We are looking forward to Bella's special Immunology bloodwork that will be done on Thursday, April 7th. This is a special test of her immune system that they haven't ever done before and are only able to do now, now that she is off all steroids, immune suppressants and her Bcells are back! 

What we are hoping and praying for:

We want Bella's T cells and Bcells to remain 100% donor and function together. We want the next tests to show that Bella is making her own IGGs, her own boosters so that she no longer requires the IVIG boosters and pokes for these boosters. We hope and pray her Bcells function perfectly with her Tcells and remember invader cells so that she makes her own antibodies and THEN we can go on to get her immunized/vaccinated! 

So you can see, so much to look forward to with this new upcoming blood test/immune system tests. If this all works out it means Bella will no longer require monthly pokes for IVIG infusions and our world of isolation will be over once she is able to be fully vaccinated. That's HUGE. 

Bella's First Line Free Bath

No I didn't get a picture of this, it was too exciting (and wet) to enjoy. The freedom of not having to worry about infection in those lines is priceless. I sort of stood there stunned for a moment, elated that I no longer have to Saranwrap and tape her entire chest to protect those lines, before a bath. They're gone. Bella splashed so much that I think she may have drank most of her bath water. I pretty much had to keep her from diving in, face first because she was so happy with her freedom of splashing and enjoying a tub full of water instead of a puddle for a sponge bath. It's been great. 

Other News From Our Last Calgary Visit

When Bella goes to the BMT clinic now, at ACH she no longer needs to go into ISO (isolation) rooms. Because her immune system is doing so well we now go to the common area for her doctor visits and infusions. Now that Bella no longer has her Broviak she will go to the lab on the 3rd floor for bloodwork. Small steps, but steps in the right direction and away from those lonely, difficult extremely isolated days. Now she can go to clinic and maybe sit beside a friend with a smile, or play with another little one in the waiting room. This doesn't mean I'm allowed to take her to just any waiting room, we still must protect her from busy public areas, but the BMT clinic is different. And if Bella is ever sick when she arrives for an appointment, we would be put back in an ISO room. 

I asked some more questions around what Bella is and is not allowed now that she can be around healthy friends and children. Bella is allowed to play with friends now but her docs suggest no more than 6 kids at a time. A lot of this precaution now is because Bella is still immune compromised as her new immune system needs the best possible chance to advance and get to the point of absolute normal function! And she needs this current protection to remain in place until she is fully vaccinated and then that can protect her even more. Anyone she is around must have had their flu shot. Any kids she is around that are older than 1y must have all their shots/vaccines/immunizations. And she is allowed to play with children under 1y if they are getting their immunizations. 

I also asked about Bella being allowed tap water vs the distilled/sterile water she has been given since before transplant. Her doctors are not allowing her tap water until she is fully vaccinated, as a precaution. So we continue to buy large jugs of distilled water for her. 

Sadly, I was told, "No" to starting her in swimming lessons now that her Broviak is out. The reason is mainly to do with her ear tubes. Bella had ear tubes put in during one of her surgeries before her transplant as another protection against any possible infection before BMT. The ear tubes would allow draining, to prevent build up and infection inside the ear. You must wear a head cap or ear plugs to swim with ear tubes, or have them removed. So Bella's ENT Doctor would like to take another look at her ear tubes and ears before we allow her to swim or have her ears go under water in the bath.

It was a long 2 year wait but Bella has finally had some wonderful chances to play with her healthy friends. It has been such a joy to have the support and understanding of very close friends to make these days happen for Bella...and me. Bella and I need these breaks outside the house very badly. And as much as I thought I would be overly nervous about Bella touching toys I haven't bought or cleaned...I wasn't. I have such supportive friends that they reassure me their child's toys are sanitized, bleached and re-cleaned just so I can be a little more relaxed and less on edge as we take on yet another life transition from hospital life to home life. Thank You. 

We are looking forward to Easter break when Bella will have more play dates with her many cousins that don't live in Swift Current. 

From the baby that keeps her mask on to the girl who keeps her bows in.

Bella is doing wonderful and I think the last month at home has been her best yet. I've really seen a shift in her personality since she had to be the kind of kid that tolerates living in a hospital to becoming a regular toddler understanding home life and friends. I've also seen a shift in her patience. I used to have so many nurses, friends, people comment on how patient Bella is for her age. How good she was at tolerating everything from being still for bandages and line care to a doctor poking and checking her all over. And I knew that came from her unique start to life of living in hospital for 2 years. I hope that her tolerance and patients stay with her, but I'm starting to see the effects of home life shift her to what you may call "normal toddler ways" or maybe even "the terrible twos."  I hate those preconceived titles for stages that average kids go through. As much as I want Bella to experience the joys of "normal life," I'm never going to call her "terrible" or tolerate her tantrums just because she's a certain age. Yes, she has had a very unique up-brining so far, but I am still go to try my hardest to keep her experiences unique to her advantages. After what her and I have been through, I don't want to expect the "terrible twos" I want to continue doing my best to teach her patience and compassion, empathy and love. God knows there are enough people in this world that only care about themselves. No matter what age Bella is, I really want her unique start to life to help her understand how much compassion this world still needs.

Swift Current SLP, OT and PT

(Speech, Occupational and Physio Therapy)

We finally were able to meet our Swift Current team of support that Bella's Calgary team transferred her to. I am happy to announce we don't really need them! That sounds odd, but it's a good thing. Once they were able to meet Bella and compete their assessments on her, it was very clear that they are here for support when she needs it. What that all means is Bella is of course at and above age level for all her expressive and receptive language. Physically she is where she needs to be and actually further ahead then expected given the timing of all her major bowel surgeries and BMT. So for example her walking and physical skills are great, her gross motor skills are on point. Side note, she's a walking machine these days, no crawling or sitting...all standing and walking aaaand running. Ha ha. Especially when I tell her to, "Come here, I gotta change your bum!"...she scurries away with a giggle. 

So basically our Swift Current physio team is awesome and loved meeting Bella. They are here when she needs them in terms of support with Bella's drinking skills and wrist function. The check in on her wrist from her Calgary doctors next step is to involve an MRI later on, since she is improving on her own with use. But if nerve damage is what is restricting her full wrist movement an MRI may be needed in the future to determine what specific type of wrist surgery is needed. For now, our Swift Current team will monitor her progress. 

Bella's academic skills are still improving as well, and this is all her own interest. No, I'm not pushing her because I am a teacher, but if you know me, you'll know I am a tad excited about her brain skills. Hehehe

She knows all her letters now and can identify them all. She knows the majority of all their sounds. She has started to love counting and asks me to count Legos with her while she builds Lego towers. She can only count to 5 on her own but can identify numbers 1-10 when she sees them written. And her animal knowledge is rediculous! She knows more than your average dog and cat these days and gets excited when she picks out a hippo, elephant or giraff in a book. Her words are so clear these days, even if she heard them for the first time...it's like she's a genius parrot. Which reminds me to try my hardest not to let an swears slip out midst a frustration moment of mine around her, because the parrot is always listening. Haha. Thankfully, my little parrot is only repeating good words. I also love that she's starting to have converstaions with me. If you understand what I mean by this, its super weird to me, but in a funny way. Her phrases and questions in conversation are getting longer and longer and I'm starting to realize mid sentence that she totally gets what I am fully saying, even if I ramble on thinking she doesn't get it...she does. She's so smart it's starting to scare me. Keeping me on my toes. 

So How Am I?

Well, my smile hides a lot. I'm open and I am honest, yes, but it still hides A LOT. I'm struggling with a lot right now and you might wonder how is it possible that I can talk about it on this blog. Well, I am an extrovert, I'm an open book. Being open about a lot of my struggles helps me deal. I beleive if you are silent and leave people guessing, they often guess wrong. So I rather be open about what I struggle with or what I need. But trust me, it wasn't easy getting to be this way however I know it's better for me. I don't want to be a person that complains and whines, I want to be strong and show everyone, my daughter, I am strong. But I'm not stupid...when you need help, you need help... So ask for it. Do what you can for your self, but when you need to, ask for help. 

I'm struggling with being told "No."

 No Kyla you can't go away for a weekend. No you can not take your daughter swimming. No, you can not plan a weekend away. No you can not take Bella to that birthday party. No you can not spur of the moment take a trip. No. 

No, you do not get a break and no you don't get a break when you want or how you want either. No you can't even plan to leave Bella with the grandparents for the weekend or a babysitter that your friend uses. They don't know Gtube care.

This is something that has been wearing me down and I am trying to relax, figure it out and try again.

I don't get a break. 'Break' is a pretty generic term, but when it means your sanity, adventure, your fun...you long for a break. No Kyla, you don't get a break. But why? Well... No one but your husband and you know how to feed Bella through her Gtube and he has to work. No one else can give her medications safely but your husband, and he has to work. No one else has been to the hundreds of physio, Gtube, venting, clinic and doctor visits but you, to know what to do incase of an emergency...and yes your hubby has to work. So no Kyla, it is not safe for you to take a break from Bella for more than a few hours, while she sleeps, or doesn't need fluids, and if she's not sick....unless your husband (that's right) isn't working. 

I'm working on making instruction sheets for everything to do with Bella's feeds, meds, Gtube venting, her needs in general for other family members. But it takes so much time, and practice and training. From a teachers point of view it's like why go through the hours of work to plan for a sub when you can just do it yourself m, even though you are practically on your death bed with the flu. It's just easier to suck it up and do it yourself.  

So I'm struggling with needing a long over due break. I can complain until I an blue in the face, but that doesn't do me any good. But how, how do I ever get a break? It's just not possible at the moment and it's starting to wear on me. The planning and prep it takes for me to just be away from Bella for even a few hours is rediculous. But that's how it goes when only me and my husband (who has to work) are the only two people who know how to care for Bella in every way she needs. And when you see the fear in others eyes while you try to explain something as simple as a gravity feed...it's not to them, it's like asking them to instantly preform brain surgery...not easy...it's scary. 

Part of me wants to give up and suck it up and just know that this is the unique cards we have been dealt. Deal with it. No, you haven't been on a vacation in 3 years and you probably won't get one for another 3 years. No you don't get to go away for the weekend with your husband just for fun. No you can't just go visit that friend you haven't seen in years because you're the only one capable of Bella's current care.

So, I'm not doing ok with all this and I need help. I need a break. As hard as my hubby, mom, family are working on this, it's difficult but hopefully we will get there soon. 

It's hard because I come from a background of 'get up and go!' Go explore, discover, have fun. My dad gave me the most amazing opportunities during my childhood to teens to 20's, to see the world, travel. I'm so happy he showed me that way of life. And now I have lived through 2 years of jail, torture and the hell of isolation with my daughter. Not only do I want a break for myself, but after being held back in so many torturous, agonizing ways...I want that break for Bella to come as well. She more than deserves to see this world, travel and explore when she wants and not be told, "No...you have to wait."

Praying those days come soon. 

This is getting to be quite the novel tonight! Goodness me. Well, go get some water, wine, coffee...this post marathon ain't over. 

Let's Talk Genetics!

We received good news from our Geneticist when we were in Calgary last! The re-testing proved what they were certain was going on, the second gene mutation wasn't found through the first testing...and this time around, it was! 

Ok Kyla, wth does that mean? 

Side note: I want to encourage everyone to ask me any questions that want to on Bella's Facebook page. Bella has such a long, confusing medical history that I know many questions need to be re-asked and many things need to be re-addressed for clarity. So ask away, I am in a place now where I can welcome any questions and not feel burdened by them. 

So let's see if I can explain the good news easily. We needed them to find this second gene mutation from Bella's "old blood" (pre-BMT blood) in order for us to be able to have a second child, through PGD-IVF (Pre Genetic Diagnosis, Invetro Fertilization). That's it. Basically the good news is, it is possible now for us to have a second child given the testing that can make sure our next child is not born with the life threatening illness of SCID. 

So in detail they highly suspected that Bella has CHH (Cartilage Hair Hypoplasia). When you have CHH, it is detected only through 2 receptive genes. So one seen from mom and one from dad. They found mine, but couldn't find Lyles. Given that the CHH specialist in Califonia reviewed all Bella's medical files, he also agreed it is very possible she has CHH so the second gene mutation must be there they just didn't find it in the first round of tests. CHH is the connection to the gene mutations causing Bella to have SCID. If they have these gene mutations they can detect them in our future embryos and make sure not to select the affected. 

Hopefully you are still following me here. 

The first set of genetic tests were sent to a lab not familiar with finding these gene mutations. And when they only found mine at first, they even suspected a new phenomenon of perhaps both mutations coming from me, causing all of Bella's rare genetic issues: CHH, Hirschprungs and SCID) 

For a second can you imagine the absolute guilt I felt possibly being the sole cause of ALL of Bella's pain and life in hospital. ALL. The 2 gene mutations (one from mom and one from dad) that caused what Bella has are, in all other cases, easy to find. So when they couldn't find the second one (Lyle's) they contemplated a spontaneous gene mutation, one they have never seen, being solely from me. 

Not that I want this to come out negative, but if your child's extremely rare genetic issues solely stem from you and you alone...that's a pretty hard pill to swallow. 

So I was thinking that was it for a while...until March 1st. 

Our Calgary geneticist got approval from our Sask. Geneticist to re-test, basically search again for this gene that they highly suspected should be there, from Lyle...in a different lab. A lab more familiar with finding these 2 gene mutations. And they did! This was such good news because it means we have a chance at successful PGD-IVF. And yes, the lab that missed it through the first set of tests is being notified of their mistake. Also, thanks to our Sask. Genetics Doctor Dr. Lemiere for approving the re-test. It cost them money to allow this, and they did, knowing the huge importance to our situation. 

The next steps

After finding the second gene mutation, they need to confirm it to identified it and use it as a marker for when we go through PGD-IVF. So they took my blood and Lyles blood again to confirm its marker. I guess you could say we shouldn't celebrate yet, as this confirmation test with take another month... but our Calgary geneticist is quite confident we can. 

Meaningful Days Ahead

17, 20, 23, 25

No, those are not this weeks Powerball...

Starting tomorrow, St. Patty's day, those numbers mean what it took for Bella to have a chance at living, surviving. 

March 17th 2015 was the day Bella started Chemo. The Chemo conditioning was needed prior to transplant to ensure her new cells could come into a clean slate and set up shop. 

March 20th 2015 was when Bella went through Sepsis because the Broviak line she had at that time was infected and showered her heart with bacteria after 4 days of chemo wiped out everything in her tiny body. 

This coming Sunday is going to be a difficult day for me. 

March 23rd 2015 was the day Bella's Bone Marrow donor had the procedure to draw the marrow from her bones to save Bella's life. 

March 25th 2015 was her Day Zero. When Bella received those life saving bone marrow cells from a life saving stranger. 

So March 25th, 2016 is Bella's Re-Birthday. Her New Life Day, when we celebrate her successful transplant one year post and her new blood that is now giving her new life and a chance to live. 

Check in on Bella's Facbook page (Isabella's Mustard Seed) for many updates and plans for her Re-Birthday coming up on Good Friday. 

And thank you again, from the absolute bottom, trenches and depths of my heart for sticking with us, praying for us, following Bella's extensive journey and truly understanding what we have been through...

Thank You.