Journal entry by Kaitlyn Zick —
Being alone caring for a very very sick baby in a small hospital room is one of the most isolating experiences in life.
When your child has cancer, it happens very suddenly, the isolation. Its hard for anyone to really relate to what you are going through; its hard for anyone to help with your child even on the good days; you can't be with your whole family very often due to hospital stays and the logistics of having one healthy and one sick child. The walls close in quickly.
Luke and I have switched to 48 hours shifts when feasible because the quick turnaround of 24 hour shifts made it hard to fully recharge, and it was hard on Emma to say good bye so often.
But 48 hours alone up here is isolating. We dont often have visitors because caring for Maddy is stressful and we have a CONSTANT stream of care team providers stopping in at all times.
And now... the part that makes it worse. This whole thing is isolating on its own, but now, we found out that the bacteria that caused Maddy's UTI is a multi-drug resistant one. It is treatable but because it cannot be treated by broad antibiotics, infection control has placed Maddy, thus us, in isolation status.... FOREVER. Yes you read that right. At risk of spreading this bacteria to other immune compromised persons, Maddy, thus we, cannot leave our room and use the floor's common areas ever again. Anytime Maddy is in a patient care area of any medical facility, for the rest of her life, she will be isolation. Care providers will wear yellow gowns and gloves to prevent spreading the bacteria, thus preventing it from mutating and becoming untreatable.
She is NOT a danger to anyone in public, us, her sister, nothing. Its an infection control thing set as a precaution to be sure care providers handling her dont pass this by accident to kids that are neutropenic, AKA has a completely suppressed immune systems.
So it sounds worse than it is, but it BLOWS! We are stuck in our room the entirety of every stay now. We can go downstairs to the first floor and stuff but we cannot roam around the care floor. So unless someone is watching Maddy, we can't leave.
Its isolating and LONELY.
So that is one update.
The other is her scan results.
Maddy's AFP had another MASSIVE drop from 41,000 to 6100! We got that news right before her scan so we were very hopeful.
Unfortunately, Maddy's tumor didnt shrink as much as anyone thought it would. At diagnosis it was 11cm X 7cm. Today it is 9cm X 5cm. Smaller, but big still, and still up against the hepatic artery.
They are fairly sure the AFP drop indicates that the tumor is mostly dead, but it has not broken down yet, thus has not shrunk very much.
So we are continuing with 2 more rounds of chemo, and then a final decision: resection or liver transplant. Followed by the last 2 rounds.
Its terrifying. Chemo has been VERY hard on her. Its heartbreaking. I keep asking "are you guys sure this is expected/normal? Should she really be enduring this much?" and I am assured, its within normal limits. But my heart aches. We can't stop the chemo because we have to fight the cancer, but the chemo is HELLLLLLLLLLLLL.
The other terrifying part is the transplant. I know this has been a very successful option for Hepatoblastoma but its terrifying. It would follow her the rest of her life. She would always have to take immuno-suppressors so her body does not reject it, the rejection episodes could be terrifying, all of it. We are terrified.
I keep thinking of all the people praying for her. I hear more and more daily and I cannot believe how lucky she is and how impactful she already is in her life that so many are praying for her. But I keep thinking, is it working?
Why havent we gotten that dose of amazing news yet? I saw a social media post the other day about a situation someone went through and how the power of prayer has lead to the good outcome. So I keep asking myself, what do I pray for to lead us to OUR good outcome?
Do I pray for strength, and perseverance and the wisdom to make decisions for my child and carry her through this journey? Do I pray for strength for Maddy, comfort for her in her pain? Wisdom for her care team?
Or can God really intervene? Do I start praying for the miracle, for the cure?
I am scared to ask God for too much but I am scared to not ask for enough.
I want my baby cancer free. I want her home with us reaching milestones and happy and healthy and laughing at her sister. I want to be with both of my girls and laugh and celebrate how amazing they are and how they make our lives so much better.
So what do I pray for to get there?
It is all so... isolating.
When your child has cancer, it happens very suddenly, the isolation. Its hard for anyone to really relate to what you are going through; its hard for anyone to help with your child even on the good days; you can't be with your whole family very often due to hospital stays and the logistics of having one healthy and one sick child. The walls close in quickly.
Luke and I have switched to 48 hours shifts when feasible because the quick turnaround of 24 hour shifts made it hard to fully recharge, and it was hard on Emma to say good bye so often.
But 48 hours alone up here is isolating. We dont often have visitors because caring for Maddy is stressful and we have a CONSTANT stream of care team providers stopping in at all times.
And now... the part that makes it worse. This whole thing is isolating on its own, but now, we found out that the bacteria that caused Maddy's UTI is a multi-drug resistant one. It is treatable but because it cannot be treated by broad antibiotics, infection control has placed Maddy, thus us, in isolation status.... FOREVER. Yes you read that right. At risk of spreading this bacteria to other immune compromised persons, Maddy, thus we, cannot leave our room and use the floor's common areas ever again. Anytime Maddy is in a patient care area of any medical facility, for the rest of her life, she will be isolation. Care providers will wear yellow gowns and gloves to prevent spreading the bacteria, thus preventing it from mutating and becoming untreatable.
She is NOT a danger to anyone in public, us, her sister, nothing. Its an infection control thing set as a precaution to be sure care providers handling her dont pass this by accident to kids that are neutropenic, AKA has a completely suppressed immune systems.
So it sounds worse than it is, but it BLOWS! We are stuck in our room the entirety of every stay now. We can go downstairs to the first floor and stuff but we cannot roam around the care floor. So unless someone is watching Maddy, we can't leave.
Its isolating and LONELY.
So that is one update.
The other is her scan results.
Maddy's AFP had another MASSIVE drop from 41,000 to 6100! We got that news right before her scan so we were very hopeful.
Unfortunately, Maddy's tumor didnt shrink as much as anyone thought it would. At diagnosis it was 11cm X 7cm. Today it is 9cm X 5cm. Smaller, but big still, and still up against the hepatic artery.
They are fairly sure the AFP drop indicates that the tumor is mostly dead, but it has not broken down yet, thus has not shrunk very much.
So we are continuing with 2 more rounds of chemo, and then a final decision: resection or liver transplant. Followed by the last 2 rounds.
Its terrifying. Chemo has been VERY hard on her. Its heartbreaking. I keep asking "are you guys sure this is expected/normal? Should she really be enduring this much?" and I am assured, its within normal limits. But my heart aches. We can't stop the chemo because we have to fight the cancer, but the chemo is HELLLLLLLLLLLLL.
The other terrifying part is the transplant. I know this has been a very successful option for Hepatoblastoma but its terrifying. It would follow her the rest of her life. She would always have to take immuno-suppressors so her body does not reject it, the rejection episodes could be terrifying, all of it. We are terrified.
I keep thinking of all the people praying for her. I hear more and more daily and I cannot believe how lucky she is and how impactful she already is in her life that so many are praying for her. But I keep thinking, is it working?
Why havent we gotten that dose of amazing news yet? I saw a social media post the other day about a situation someone went through and how the power of prayer has lead to the good outcome. So I keep asking myself, what do I pray for to lead us to OUR good outcome?
Do I pray for strength, and perseverance and the wisdom to make decisions for my child and carry her through this journey? Do I pray for strength for Maddy, comfort for her in her pain? Wisdom for her care team?
Or can God really intervene? Do I start praying for the miracle, for the cure?
I am scared to ask God for too much but I am scared to not ask for enough.
I want my baby cancer free. I want her home with us reaching milestones and happy and healthy and laughing at her sister. I want to be with both of my girls and laugh and celebrate how amazing they are and how they make our lives so much better.
So what do I pray for to get there?
It is all so... isolating.
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