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.
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.
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 >>
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.
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.
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
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.
