Having a hard time putting into words how I have been feeling lately. Charlie has been doing so well that sometimes I forget that he has cancer. Looking at him you wouldn't realize at all that he has cancer. He looks robust and healthy. I've never wanted him to look sickly but somehow him looking so well makes it harder to swallow. Knowing that his body is working against him from the inside out isn't easy to know. Not looking sick just fools you into forgetting and constantly thinking "hey maybe it's not that bad"! But I guess the reality is it's pretty bad.
When you google various cancers you can find out so much information about the various types of cancers. Foundations, support groups, financial assistance, clinical trials, marathons, wrist bands, t-shirts etc. etc. etc. But when you Google JMML there isn't much out there. It's a form of leukemia and there is plenty out there about leukemia but having a rare form of leukemia that only affects 25-50 children a year leaves you feeling like you are alone on your own little island. While it's nice to be able to talk to other parents whose kids have survived cancer sometimes you just need the connection of a parent who has dealt with the exact same fear as you. A lot of leukemia have a survival rate of 80% which is a drastic difference from 50%. It's only a 30% difference but when you are talking about whether or not your baby will survive that 30% is the size of Antarctica. I'm tired of whining about how unfair it is...but it is unfair. It's unfair for a baby to have cancer (any child really) but it's even more unfair to have some ridiculously rare cancer. I mean how the fuck does that happen? Where is the fairness in a cancer where half the children die and there is very little out there about it? No one is ever going to sell a kitchen aid mixer in a special color to benefit research for JMML, hell JMML doesn't even have a special color or ribbon. I assume leukemia as a whole does however.
I try not to dwell on all this too much because no matter how awful it is I should enjoy my family while I have them. I should enjoy Charlie while he is here and I should just assume that he will always be here. Right now his bloodwork looks amazing which brings us a lot of hope because JMML is a pretty virulent type of cancer and the fact that he's stable is good. We have it hanging over our heads that if his JMML goes away (yay!) we still have the risk for other cancers and vasculitis hanging over our heads. Plus the hydrocephalus and infection risks hanging over our head. Then there is the fact that we still have no idea what is going on inside of his brain. We have another MRI coming up and this is the big one. This is the one where they will think we will be able to see what kind of delays he may have, whether or not he suffered brain damage from his brain bleed among many other things. We also have a neurodevelopmental exam coming up which will again determine what kind of delays Charlie may have. We are also starting physical therapy to help him with his low tone (at 3 months he still has no head control and is still a very hyptonic floppy baby) and hopefully we will get somewhere with that.
Because I have a tendency to be a negative person sometimes I wonder what the point of things like physical therapy are because we've been warned that a bone marrow transplant & radiation could leave him so weak he could end up in the PICU for months and months while he recovers but I have to remember that no matter what his ailments are he's still an actual baby and we need to treat him as such. He may never be allowed to breastfeed and he may never be allowed to take much from a bottle and we may not be starting solids in the first year of his life and he may never walk but he's still an actual person and we have to fight and work hard and help him in every way that we can.
I spent my entire pregnancy excited for the end because I knew Charlie was going to be our last baby and I was just excited to get the pregnancy over so we could just get on with our new life and live our new version of normal. Of course this isn't really what I was expecting. Now I just need November & December to end because I am ready for 2013 to happen. I don't know if 2013 will bring us good news or happiness but I am ready to find out. I am ready to close the door on 2012 and start fresh and new and see where next year takes us. I may not like what 2013 brings us but I need to see the dust of 2012 in my rearview mirror and move on.
Wednesday, November 28, 2012
Sunday, November 25, 2012
Post Thanksgiving Thankfulness
Thanksgiving has come and gone. Charlie was able to spend his first Thanksgiving with his family and it was wonderful. I'm trying hard not to be so bitter and angry and trying to muster up a few things that I am thankful for. It's hard because the reality is I am pretty bitter and angry but I'll work through it.
I am thankful for the friends and family and even strangers who have supported us through our journey. Thankful for the family and friends who have helped us with the kids, especially Henry during this time. I feel awful how little attention I've been able to give the other kids but having a support system of people who could help has been wonderful. Thankful for the friends who helped in small ways like bringing food to the hospital or just sitting there hanging out with me. Especially my lovely friend Elie who would just come and let me talk about things that were not Charlie and not cancer. Having a friend who will answer off the wall questions about growing up in a communist country is totally priceless.
I am thankful that we live in a large city with an incredible Children's Hospital and an incredible team of doctor's. I am thankful that when Charlie developed a cold right before his shunt surgery the PICU nurses and doctor's worked hard to save him and then keep him alive. I cannot believe in this day and age of medical technology we still do not have a handle on the common cold and that my baby with cancer almost lost his life due to a cold. I am thankful that he did not and he is here with us. Watching your baby almost die from a cold is just such an awful helpless feeling. There is no medicine, no treatment nothing you can do to fix it. So I am thankful to the PICU nurses who were so kind to us and took excellent care of Charlie. They reminded us a few times that we weren't required to stay with him at all times and we didn't have to stay the night but honestly I was incapable of letting him be alone. So I am thankful that they also did not push us to leave even though we were some of the only parents staying with their kids in the PICU.
I am thankful to my small Internet group of friends who were there the entire time. There for me no matter how crazy it got no matter how crazy I sounded they were always there with encouragement and kind words. Thankful that there is an Internet to help keep me sane while we go through this. From google to facebook to online support groups to crazy youtube videos the Internet really helps save your sanity.
I am thankful for the people who keep telling me that they are in awe of me and that I am an inspiration. Because I don't feel like one I feel like a hot mess and like I don't know what I'm doing and that I am just failing. It's nice to have a reminder that maybe I'm not doing as bad as I think that I am. I keep hearing from people that they would never be able to handle it or stay strong. They would just cry all the time and be crazy. I will say crying all the time is really tempting but it's honestly not always an option. Sometimes you just have to power through it. I will say that you really don't know how you will act in these situations. I've surprised myself a few times because if you had asked me 5 months ago how I would handle some of this stuff my answer would not reflect the reality of how I have handled this.
I am thankful that I can be a big contradictory mess and never make sense and no one seems to be bothered by it. Or if they are they keep it to themselves. I feel like I am on the world's worst roller coaster ride which sucks because I hate roller coasters. I hate rides. When I was a kid my mom forced me onto a few roller coasters convinced that if I just went on them I'd like them. No. Still don't, hated every minute of every ride.
Finally I am thankful for Charlie. Sometimes I think about how much the notion of him being put here for just a brief period really sucks. It's stupid. Giving people their babies for a brief period is stupid and dumb and sucks. But I am thankful that I get this time no matter how it ends. I am hopeful that Charlie will be with us for many, many years and thankful for whatever time I do get. But I'm putting it out there it really sucks if I don't get that much time. It sucks and it's unfair and I will seriously stomp my feet. I am an ugly cryer and no one wants to be subjected to that. It's just unfair all around.
So happy post thanksgiving everyone, may your leftovers keep you full for a week.
I am thankful for the friends and family and even strangers who have supported us through our journey. Thankful for the family and friends who have helped us with the kids, especially Henry during this time. I feel awful how little attention I've been able to give the other kids but having a support system of people who could help has been wonderful. Thankful for the friends who helped in small ways like bringing food to the hospital or just sitting there hanging out with me. Especially my lovely friend Elie who would just come and let me talk about things that were not Charlie and not cancer. Having a friend who will answer off the wall questions about growing up in a communist country is totally priceless.
I am thankful that we live in a large city with an incredible Children's Hospital and an incredible team of doctor's. I am thankful that when Charlie developed a cold right before his shunt surgery the PICU nurses and doctor's worked hard to save him and then keep him alive. I cannot believe in this day and age of medical technology we still do not have a handle on the common cold and that my baby with cancer almost lost his life due to a cold. I am thankful that he did not and he is here with us. Watching your baby almost die from a cold is just such an awful helpless feeling. There is no medicine, no treatment nothing you can do to fix it. So I am thankful to the PICU nurses who were so kind to us and took excellent care of Charlie. They reminded us a few times that we weren't required to stay with him at all times and we didn't have to stay the night but honestly I was incapable of letting him be alone. So I am thankful that they also did not push us to leave even though we were some of the only parents staying with their kids in the PICU.
I am thankful to my small Internet group of friends who were there the entire time. There for me no matter how crazy it got no matter how crazy I sounded they were always there with encouragement and kind words. Thankful that there is an Internet to help keep me sane while we go through this. From google to facebook to online support groups to crazy youtube videos the Internet really helps save your sanity.
I am thankful for the people who keep telling me that they are in awe of me and that I am an inspiration. Because I don't feel like one I feel like a hot mess and like I don't know what I'm doing and that I am just failing. It's nice to have a reminder that maybe I'm not doing as bad as I think that I am. I keep hearing from people that they would never be able to handle it or stay strong. They would just cry all the time and be crazy. I will say crying all the time is really tempting but it's honestly not always an option. Sometimes you just have to power through it. I will say that you really don't know how you will act in these situations. I've surprised myself a few times because if you had asked me 5 months ago how I would handle some of this stuff my answer would not reflect the reality of how I have handled this.
I am thankful that I can be a big contradictory mess and never make sense and no one seems to be bothered by it. Or if they are they keep it to themselves. I feel like I am on the world's worst roller coaster ride which sucks because I hate roller coasters. I hate rides. When I was a kid my mom forced me onto a few roller coasters convinced that if I just went on them I'd like them. No. Still don't, hated every minute of every ride.
Finally I am thankful for Charlie. Sometimes I think about how much the notion of him being put here for just a brief period really sucks. It's stupid. Giving people their babies for a brief period is stupid and dumb and sucks. But I am thankful that I get this time no matter how it ends. I am hopeful that Charlie will be with us for many, many years and thankful for whatever time I do get. But I'm putting it out there it really sucks if I don't get that much time. It sucks and it's unfair and I will seriously stomp my feet. I am an ugly cryer and no one wants to be subjected to that. It's just unfair all around.
So happy post thanksgiving everyone, may your leftovers keep you full for a week.
Wednesday, November 21, 2012
When the Summer Comes
Charlie was prescribed vitamin d today. Breast milk has next to no vitamin d and he's on a very small amount of formula just enough to give him 22 extra calories per feeding. Low vitamin d is a pretty common thing in the Pac NW and it can cause all kinds of issues especially in a person who already has issues.
When they went over the dosing they explained that the current amount is the winter dose and there is a different dose for summer because in the summer her will be getting some sun. The idea of a summer dose has been haunting me all night. It made me realize that Charlie might not be here for summer. I am trying hard to have faith and have hope and convince myself everything will be alright. But the reality is he has a 50% survival rate which means he has a 50% chance of not making it.
I have to believe he will make it, he will be okay. But this isn't a movie. No one is guaranteeing us a happy ending our story isn't required to end well to keep movie goers happy. All I want to do is plan for Charlie's future but I don't know how to do that when I'm so scared that Charlie being with us will be so brief. I keep telling Jeremy that I don't think I can be one of those inspirational stories. But even more so I don't think I can be a mom of a baby that isn't here anymore. I don't think that I have that in me.
I don't know how to finish this blog because what else is there to say? Besides possibly begging the universe to make my baby okay. It's not fair to bring him here and then torture him for months on end and then at the end all we have are memories of this awful time and nothing to show for it. At the end of this I deserve a healthy baby for going through all this hell. I think that going through this hell earns me three healthy kids who grow up to be three healthy and happy adults. I also don't think that I am asking too much because there are people out there with healthy, happy kids and live happy wonderful lives. I don't even need wonderful I will settle for mediocre. As long as mediocre comes with a side of three healthy, happy kids.
When they went over the dosing they explained that the current amount is the winter dose and there is a different dose for summer because in the summer her will be getting some sun. The idea of a summer dose has been haunting me all night. It made me realize that Charlie might not be here for summer. I am trying hard to have faith and have hope and convince myself everything will be alright. But the reality is he has a 50% survival rate which means he has a 50% chance of not making it.
I have to believe he will make it, he will be okay. But this isn't a movie. No one is guaranteeing us a happy ending our story isn't required to end well to keep movie goers happy. All I want to do is plan for Charlie's future but I don't know how to do that when I'm so scared that Charlie being with us will be so brief. I keep telling Jeremy that I don't think I can be one of those inspirational stories. But even more so I don't think I can be a mom of a baby that isn't here anymore. I don't think that I have that in me.
I don't know how to finish this blog because what else is there to say? Besides possibly begging the universe to make my baby okay. It's not fair to bring him here and then torture him for months on end and then at the end all we have are memories of this awful time and nothing to show for it. At the end of this I deserve a healthy baby for going through all this hell. I think that going through this hell earns me three healthy kids who grow up to be three healthy and happy adults. I also don't think that I am asking too much because there are people out there with healthy, happy kids and live happy wonderful lives. I don't even need wonderful I will settle for mediocre. As long as mediocre comes with a side of three healthy, happy kids.
Tuesday, November 20, 2012
The Only Reality He Knows
Charlie spent the first three weeks of his life in the hospital. The first three weeks having test after test run, being poked over and over again. Feeding tube, oxygen, mri's, cat scans, x-rays, ultrasounds (pretty sure there isn't a part of Charlie we haven't seen detail of), iv's, bone marrow biopsy the works.
Doctors from all specialities came to see and examine him. Cardiologist, pulmonologist, neurologist, neurosurgeon, oncologist, hematologist, geneticist and probably a few I still can't remember. Each time a doctor came to see him, or a nurse did his vitals, or a lab tech came to draw yet more blood from this tiny little baby they'd all comment about how "good" he was. He'd be so calm, he'd lay there let them do their thing. He would barely cry he handled it all like a champ. It took me a while to realize it but of course he took it well. Of course he would just stay calm and just lay there. He was NEW. He was a brand new baby and this was the only life he knew. He had know idea that this wasn't normal. He had no idea that babies are born, they go home with their families, they eat from breasts/bottles, sleep in cribs, aren't attached to a million monitors. His normal life, his normal routine wasn't being interrupted. It was the only normal he knew.
I struggle with this notion. Part of me wants to be grateful for that. Be grateful that it's easier on him because he had no idea that this isn't how it's supposed to be. The other part of me wants to cry and scream and rage and just be so fucking angry because this should not be his normal this should not be his life. They told me over and over again in the waiting period that we shouldn't worry too much because babies aren't usually born with cancer. When they explained to me the bone marrow biopsy and what they were looking for I asked how likely it was that it would come up that he had leukemia. They told me that more people don't have leukemia then do and usually the test shows no leukemia. I know they didn't promise, I know they didn't guarantee but it certainly feels like on some level I was lied too. Babies being born with cancer is rare, it doesn't generally happen. Yet here we are, it happened to us.
I've never been big on "that can't happen to me" because the reality is that's just not true. Things happen and they are never things you expect. But the reality is babies being born with cancer doesn't happen. Most people in their lifetime not only will never have to experience it they will never have to know anyone who is experiencing it. I went from so excited to meet this baby, so excited that he was my last, so excited to not be pregnant anymore so we could start our new life with our Charlie to "omfuckinggod my baby has cancer". That is not a shift you can ever prepare yourself for that's not even something you even worry about in the back of your head. All the things you worry about when you are pregnant cancer isn't one that crosses your mind.
The other night we had to take Charlie to the emergency room. He was crying inconsolably and was throwing up. As it turns out he had an upset tummy from the protein powder that they had us add to his breastmilk/formula mixture. Unfortunately crying & vomiting are signs that his shunt isn't working. A catscan & an xray later showed us that his shunt was working just fine and it was just an upset stomach. My baby was at the emergency room because he had gas. That is a first time mom thing. I am a third time mom, Charlie is my third baby. Any other baby I would have given him gripe water, massaged his tummy and rocked him all night if that's what it took. But it's Charlie and he had to go get checked out just to be safe. Just one more thing that isn't fair in this reality of ours. We can't ever just have a fussy baby. We have to worry incessantly over every little thing, every little cry, every time he's sleepier than normal we have to worry.
Every day I just want to tell Charlie how sorry I am, how sorry I am that this is his life and this is how it has to be. We all love him and want him to have an incredible life. We want his reality to be entirely different. We want our reality to be entirely different. I wouldn't give up Charlie for anything in this world but I wish that there was something I could give up or some deal I could make to make his reality different. To make him healthy and whole. If anyone knows of any devils, demons or leprechauns out there making deals for souls or whatnot send me an e-mail because I would do just about anything to change this babies reality.
Doctors from all specialities came to see and examine him. Cardiologist, pulmonologist, neurologist, neurosurgeon, oncologist, hematologist, geneticist and probably a few I still can't remember. Each time a doctor came to see him, or a nurse did his vitals, or a lab tech came to draw yet more blood from this tiny little baby they'd all comment about how "good" he was. He'd be so calm, he'd lay there let them do their thing. He would barely cry he handled it all like a champ. It took me a while to realize it but of course he took it well. Of course he would just stay calm and just lay there. He was NEW. He was a brand new baby and this was the only life he knew. He had know idea that this wasn't normal. He had no idea that babies are born, they go home with their families, they eat from breasts/bottles, sleep in cribs, aren't attached to a million monitors. His normal life, his normal routine wasn't being interrupted. It was the only normal he knew.
I struggle with this notion. Part of me wants to be grateful for that. Be grateful that it's easier on him because he had no idea that this isn't how it's supposed to be. The other part of me wants to cry and scream and rage and just be so fucking angry because this should not be his normal this should not be his life. They told me over and over again in the waiting period that we shouldn't worry too much because babies aren't usually born with cancer. When they explained to me the bone marrow biopsy and what they were looking for I asked how likely it was that it would come up that he had leukemia. They told me that more people don't have leukemia then do and usually the test shows no leukemia. I know they didn't promise, I know they didn't guarantee but it certainly feels like on some level I was lied too. Babies being born with cancer is rare, it doesn't generally happen. Yet here we are, it happened to us.
I've never been big on "that can't happen to me" because the reality is that's just not true. Things happen and they are never things you expect. But the reality is babies being born with cancer doesn't happen. Most people in their lifetime not only will never have to experience it they will never have to know anyone who is experiencing it. I went from so excited to meet this baby, so excited that he was my last, so excited to not be pregnant anymore so we could start our new life with our Charlie to "omfuckinggod my baby has cancer". That is not a shift you can ever prepare yourself for that's not even something you even worry about in the back of your head. All the things you worry about when you are pregnant cancer isn't one that crosses your mind.
The other night we had to take Charlie to the emergency room. He was crying inconsolably and was throwing up. As it turns out he had an upset tummy from the protein powder that they had us add to his breastmilk/formula mixture. Unfortunately crying & vomiting are signs that his shunt isn't working. A catscan & an xray later showed us that his shunt was working just fine and it was just an upset stomach. My baby was at the emergency room because he had gas. That is a first time mom thing. I am a third time mom, Charlie is my third baby. Any other baby I would have given him gripe water, massaged his tummy and rocked him all night if that's what it took. But it's Charlie and he had to go get checked out just to be safe. Just one more thing that isn't fair in this reality of ours. We can't ever just have a fussy baby. We have to worry incessantly over every little thing, every little cry, every time he's sleepier than normal we have to worry.
Every day I just want to tell Charlie how sorry I am, how sorry I am that this is his life and this is how it has to be. We all love him and want him to have an incredible life. We want his reality to be entirely different. We want our reality to be entirely different. I wouldn't give up Charlie for anything in this world but I wish that there was something I could give up or some deal I could make to make his reality different. To make him healthy and whole. If anyone knows of any devils, demons or leprechauns out there making deals for souls or whatnot send me an e-mail because I would do just about anything to change this babies reality.
Saturday, November 17, 2012
The Moments That Haunt
Charlie is 2 months old and so far with him there have been more scary moments that haunt me then in my entire 12 years of parenting. Arianna & Henry have had moments where I was scared but those have been few and far between. Charlie though, Charlie has caused my heart to stop beating more than once.
When he was 4 (maybe 5?) days old he had an MRI I wasn't there for it Jeremy was. He did the mornings in the NICU and I did the afternoon then together we did the evenings. The MRI was in the morning so it was Jeremy's turn. They gave him two separate doses of morphine to keep him sedated for the MRI. When I showed up at the NICU it had been a few hours since his last dose. His nurse let me know he had a few apnea episodes but otherwise was doing okay. She was a bit concerned that he hadn't come out of the sedation yet and had paged the doctor to come look at him. The doctor came examined him and told me that he looked good and should be coming out within the next 30 minutes. Three minutes after she said that Charlie's heart rate and oxygen stats dropped. Then they kept dropping. I don't remember much but I remember the nurse rushing over, I remember a code being called I remember doctors filling the room. I also remember that I fled. I literally ran out of the room because I couldn't watch. It seems so awful that I left my poor baby in that state but I couldn't watch. They resuscitated him and finally pushed a dose of narcon which reversed the effect of the morphine. They hadn't done it earlier as you can't use it on preemies so they don't keep it in the NICU. That was not a good moment. That one haunts me the most. From watching him stop breathing, to the doctors rushing in to knowing that I actually ran away from it all. The worst part is I wasn't able to hold him after it was over. That night I wasn't able to hold him either the MRI had shown a brain bleed and they were doing a transfusion. I didn't get to hold him again until the next afternoon where I cried and apologized over and over for abandoning him.
At 9 days old Charlie was transferred from the UW NICU to Seattle Children's Hospital. Seeing him loaded up in a portable incubator (which he was almost too big for) was awful. I know he was safe but it was just such a hard thing to see. We thought when he left the NICU it would be in a carseat and coming home with us. But it wasn't, it was to go to another hospital where he would spend the next 3 weeks.
At 12 days old Charlie had a bone marrow biopsy. I was scared because once again he would be sedated. I sat in the surgery waiting room in absolute terror. Finally I just went back to his room to wait for him because I think my anxiety was causing other people in the waiting room to get anxious. They brought him back to the room and the nurse let me know that he did great except on the way back from recovery in the elevator he stopped breathing. She had to rush him off the elevator and grab the first doctor she saw to help her. Luckily he came out okay but just knowing that once again he stopped breathing and I again wasn't there just killed me.
I would guess that the entire three weeks where I stared at him so small in a giant crib attached to so many machines would also count as a haunting moment. The big one would be though when the pulmonary team came in to tell me that he was in respiratory failure. The doctor didn't believe in sugar coating anything and he was very honest about the situation. That one was hard. We thought he was almost able to come home and while you expect set backs you don't expect set backs like "your son is in respiratory failure". I learned this information in the middle of "shift" change with Jeremy. He was going home and I was staying the next two days. I again left though. I needed an hour to cry and scream int he privacy of the van.
When Charlie needed shunt surgery we knew that his breathing problems made the surgery riskier. What no one realized at the time was that he had a minor cold (not very symptomatic and what symptoms he did have we all thought was his reflux) and the surgery made that cold 1000x worse. I think they would have done the surgery anyway as the pressure in his brain was at dangerous levels. Seeing him in the PICU with a breathing tube down his throat is a nauseating image for me. Then when the nurse told me that they almost lost him while trying to get the tube in made it all worse. They couldn't get the tube in and for the life of him they couldn't figure out why. Finally someone thought to suction him and they pulled out a giant solid wad of mucus and after that the tube went in. The anesthesiologist told me it was one of the scariest moments of her career. I don't like hearing that.
Not long after that revelation our oncologist came to find us in the PICU. She wanted us to know that all of Charlie's tests were back. He did in fact have JMML. Unfortunately he did not have Noonan's Syndrome (noonan's meant no treatment and he'd be okay with limited intervention) but a rare genetic mutation. It was great finally having answers but also awful because of what those answers were. We waited two months to finally hear that he had cancer, not just cancer but a cancer he only had a 50% chance of surviving.
I assume that there are many more moments to come with Charlie. I am trying hard to become stronger and braver so that I can deal with these moments without running away or becoming a giant sobbing bucket of tears. But I'm not sure bravery in regards to watching your child be sick is something you can develop. I am sure no one will ever fault me for being a coward, or weak, or a big sobbing mess but I fault me. There are mom's out there who are strong and brave and kick ass and deal with it. I don't know how to be that mom. All I want is for my baby to be okay so that I don't have to be that mom. I want my biggest problem to be that he won't sleep through the night, or he has colic, or he has bad gas, or he will only sleep if someone is holding him. I don't want his biggest problem to be cancer. I don't want to have to figure out how to deal with that. Can I once again mention how grossly unfair life is???
When he was 4 (maybe 5?) days old he had an MRI I wasn't there for it Jeremy was. He did the mornings in the NICU and I did the afternoon then together we did the evenings. The MRI was in the morning so it was Jeremy's turn. They gave him two separate doses of morphine to keep him sedated for the MRI. When I showed up at the NICU it had been a few hours since his last dose. His nurse let me know he had a few apnea episodes but otherwise was doing okay. She was a bit concerned that he hadn't come out of the sedation yet and had paged the doctor to come look at him. The doctor came examined him and told me that he looked good and should be coming out within the next 30 minutes. Three minutes after she said that Charlie's heart rate and oxygen stats dropped. Then they kept dropping. I don't remember much but I remember the nurse rushing over, I remember a code being called I remember doctors filling the room. I also remember that I fled. I literally ran out of the room because I couldn't watch. It seems so awful that I left my poor baby in that state but I couldn't watch. They resuscitated him and finally pushed a dose of narcon which reversed the effect of the morphine. They hadn't done it earlier as you can't use it on preemies so they don't keep it in the NICU. That was not a good moment. That one haunts me the most. From watching him stop breathing, to the doctors rushing in to knowing that I actually ran away from it all. The worst part is I wasn't able to hold him after it was over. That night I wasn't able to hold him either the MRI had shown a brain bleed and they were doing a transfusion. I didn't get to hold him again until the next afternoon where I cried and apologized over and over for abandoning him.
At 9 days old Charlie was transferred from the UW NICU to Seattle Children's Hospital. Seeing him loaded up in a portable incubator (which he was almost too big for) was awful. I know he was safe but it was just such a hard thing to see. We thought when he left the NICU it would be in a carseat and coming home with us. But it wasn't, it was to go to another hospital where he would spend the next 3 weeks.
At 12 days old Charlie had a bone marrow biopsy. I was scared because once again he would be sedated. I sat in the surgery waiting room in absolute terror. Finally I just went back to his room to wait for him because I think my anxiety was causing other people in the waiting room to get anxious. They brought him back to the room and the nurse let me know that he did great except on the way back from recovery in the elevator he stopped breathing. She had to rush him off the elevator and grab the first doctor she saw to help her. Luckily he came out okay but just knowing that once again he stopped breathing and I again wasn't there just killed me.
I would guess that the entire three weeks where I stared at him so small in a giant crib attached to so many machines would also count as a haunting moment. The big one would be though when the pulmonary team came in to tell me that he was in respiratory failure. The doctor didn't believe in sugar coating anything and he was very honest about the situation. That one was hard. We thought he was almost able to come home and while you expect set backs you don't expect set backs like "your son is in respiratory failure". I learned this information in the middle of "shift" change with Jeremy. He was going home and I was staying the next two days. I again left though. I needed an hour to cry and scream int he privacy of the van.
When Charlie needed shunt surgery we knew that his breathing problems made the surgery riskier. What no one realized at the time was that he had a minor cold (not very symptomatic and what symptoms he did have we all thought was his reflux) and the surgery made that cold 1000x worse. I think they would have done the surgery anyway as the pressure in his brain was at dangerous levels. Seeing him in the PICU with a breathing tube down his throat is a nauseating image for me. Then when the nurse told me that they almost lost him while trying to get the tube in made it all worse. They couldn't get the tube in and for the life of him they couldn't figure out why. Finally someone thought to suction him and they pulled out a giant solid wad of mucus and after that the tube went in. The anesthesiologist told me it was one of the scariest moments of her career. I don't like hearing that.
Not long after that revelation our oncologist came to find us in the PICU. She wanted us to know that all of Charlie's tests were back. He did in fact have JMML. Unfortunately he did not have Noonan's Syndrome (noonan's meant no treatment and he'd be okay with limited intervention) but a rare genetic mutation. It was great finally having answers but also awful because of what those answers were. We waited two months to finally hear that he had cancer, not just cancer but a cancer he only had a 50% chance of surviving.
I assume that there are many more moments to come with Charlie. I am trying hard to become stronger and braver so that I can deal with these moments without running away or becoming a giant sobbing bucket of tears. But I'm not sure bravery in regards to watching your child be sick is something you can develop. I am sure no one will ever fault me for being a coward, or weak, or a big sobbing mess but I fault me. There are mom's out there who are strong and brave and kick ass and deal with it. I don't know how to be that mom. All I want is for my baby to be okay so that I don't have to be that mom. I want my biggest problem to be that he won't sleep through the night, or he has colic, or he has bad gas, or he will only sleep if someone is holding him. I don't want his biggest problem to be cancer. I don't want to have to figure out how to deal with that. Can I once again mention how grossly unfair life is???
Sunday, November 11, 2012
The Cost of Thankfulness
With Thanksgiving fast approaching I am trying to think of all the things that I am thankful for. It's a struggle because really I'm just bitter and angry at the world and being thankful seems stupid and a waste of time because what the hell has being thankful ever done for me? That said there has to be some things to be thankful for.
Of course it honestly feels like the universe is desperately trying to strip me of all the things that I could possibly be thankful for.
I'm just so sad. So sad and so scared and have so little interest in Thanksgiving. Being thankful just hurts because all the things I am thankful for feel so precarious.
- Jeremy has a job
- We are not so broke we are selling our possessions
- We have health insurance
- We have the kids
- I have friends and family
Of course it honestly feels like the universe is desperately trying to strip me of all the things that I could possibly be thankful for.
- Right now Jeremy is on FMLA he is out of paid time off but he is able to miss work with no repercussions. That won't last. He has been with his company for a very long time and I am very hopeful that they will continue to be flexible but as it stands Jeremy cannot miss anymore work at all. No more appointments, no more helping out with hospital stays etc.
- Hospital stays cost a lot. Not the medical bills portion. But simple things like food/gas/coffee etc. really add up. We've had people bring us food and that was helpful but people can't bring us food for every meal. Our first hospital stay we had access to a fridge etc. so we could bring all our food. The second hospital stay Charlie was in isolation and anyone in isolation is not allowed to use the unit fridge etc. so we were forced to eat in the cafeteria as we had nowhere to store food. That was easy when he was in ICU as you don't have to stay with your kid at all times when in ICU. All other floors though you are expected to stay with your kid at all times. It's a children's hospital so you are encouraged to take your kid with you and they are allowed out of their rooms (except while in isolation) and allowed around the hospital. Unless they are like Charlie and are on oxygen. Which brings me to the second cost of gas. We racked up a lot of gas driving back and forth to switch off and bring each other meals. I don't even want to think of the wear and tear on our car. Then it's the things no one ever thinks of. Like for Charlie's first hospital stay he needed clothes but he needed warm clothes with easy access for doctors and all the monitors etc. so we had to buy some hospital friendly outfits which was another cost that was not easy to deal with since there was a time Jeremy was not at work and out of paid time off. We are facing at a minimum a 5 week hospital stay for Charlie's transplant which could actually mean we end up so broke we sell our possessions. Of course we don't have nice things so that won't end well, we even have "old fashioned" tvs!
- Our insurance is okay. It's a high deductible plan with a high out of pocket maximum. They have been denying claims but I'm trying not to think about that. We are applying for Children's financial aid no idea if we will qualify. In Washington state any person hospitalized for 30 days qualifies for state medical for one year...well Charlie was discharged after 29 days (they don't count the discharge date otherwise it would have been 30) so there goes that help for now. The reality is Children's will treat him and if we end up buried under a pile of medical bills that we can't pay we will face that hurdle some other day.
- I am thankful for the kids. So very thankful. It's a cruel thought knowing that Charlie could be taken from us. It isn't fair and doesn't make sense. Why give someone a baby only to take them away after torturing them for a few months? I'm tyring to be optimistic and assume he will get better but the reality is it's a 50% survival rate which in a glass half empty view means that he has a 50% chance of not making it and it breaks my heart. I know that it's okay odds there are other cancers that have worse odds. But 50% when you are talking about my innocent baby is just not comforting. I don't even want to think about the possibility of Henry having the same mutation and the same cancer. That's not even something I can handle because losing one is world crushing and losing both I don't even think there are words to describe that scenario.
- Very thankful for friends and family but in the back of my head i have to wonder how much they can deal with. How much support they can offer until it's too much. How much sadness they can endure in regards to this situation. How much they can help before it's too much? I've never been a person to ask for help or rely on people and now here I am helpless and needing so many people and I feel awful needing so much.
I'm just so sad. So sad and so scared and have so little interest in Thanksgiving. Being thankful just hurts because all the things I am thankful for feel so precarious.
Friday, November 9, 2012
Stages of Grief...stuck on anger
"I know life is hard, I think everyone knows that in their hearts, but why does it have to be cruel as well? Why does it have to bite?"
That's a quote from the Stephen King book 11/22/63 I have been rereading it as I can't concentrate on anything new but I need to keep my mind busy. I read that quote and all I could think was "isn't that the fucking truth?". I get that life isn't fair, I understand that life is hard. But sometimes it is unnecessarily cruel. I know that I am not the first person ever to have a sick baby. I know that there are babies sicker than my baby. But sometimes I feel like I am all alone on an island of angry and no one out there could possibly have it worse than I do.
This week when we went to Oncology they told us that Charlies cancer is the result of a genetic mutation in his CBL gene. The "exciting" part is that it's a brand new mutation and he is the first to ever present with it. Exciting to the world of genetic cancer not to me obviously. I am not angry that they find it exciting or interesting. These are people who dedicate their lives to research of this stuff and I understand why they find it exciting. I wish it wasn't happening but I do not fault their excitement. Now the part where life is being extra cruel...they wanted to know if I had ever considered that since Charlie had this mutation Henry could have it as well. Why would I consider that my other child also had a genetic mutation that would cause cancer? That is not something that ever crossed my mind not even once. So now Henry has to be tested as well. Henry is 2 and is healthy and has never had problems. I guess that doesn't necessarily mean much but I tell myself that to comfort me. Because hurting both my boys seems unnecessary and beyond unfair.
Then on top of that news as it turns out Charlie's white blood cell count more than doubled in two days. Infection? Bone marrow overreacting to surgery? Leukemia becoming more aggressive meaning he will need a round of chemo while we wait for a bone marrow transplant? No one knows yet. There are so many things they don't know about Charlie yet. He still remains a mystery in so many ways. Nothing mysterious to me though, he is my baby and I love him and I plan to fight for him. I will use my anger to fight for him because I don't know what else to do with it. Shaking my fists at the sky to yell at what feels like a malevolent god seems pointless. Asking why me seems pointless. Being angry that the world is full of shitty mothers who get perfectly healthy kids and don't have to go through this hell seems silly. So I will use it to fight. I don't know how, I don't know what to fight for but I just know I will fight.
I told my mom that I had to believe that Charlie was going to be okay. Because otherwise why put him through all this hell? What is the reason for this torture if he won't be okay? I understand that kids die every day after going through even worse but I can't just accept that he won't make it. In the middle of the night though when all is quiet all I can think is about how fucking awful it will be is if we go through all this and at the end of it all we have is a giant stack of medical bills and nothing else but painful sad memories.
There are a lot of people out there supporting us. A lot of people rooting for Charlie. Yet I still feel so alone. I'm obviously not but I can't help but to feel otherwise. I also feel pathetically sad. I read all these inspiring stories of cancer survivors and I do not feel capable of being inspiring. I feel capable of being angry and sad and that is my limit.
That's a quote from the Stephen King book 11/22/63 I have been rereading it as I can't concentrate on anything new but I need to keep my mind busy. I read that quote and all I could think was "isn't that the fucking truth?". I get that life isn't fair, I understand that life is hard. But sometimes it is unnecessarily cruel. I know that I am not the first person ever to have a sick baby. I know that there are babies sicker than my baby. But sometimes I feel like I am all alone on an island of angry and no one out there could possibly have it worse than I do.
This week when we went to Oncology they told us that Charlies cancer is the result of a genetic mutation in his CBL gene. The "exciting" part is that it's a brand new mutation and he is the first to ever present with it. Exciting to the world of genetic cancer not to me obviously. I am not angry that they find it exciting or interesting. These are people who dedicate their lives to research of this stuff and I understand why they find it exciting. I wish it wasn't happening but I do not fault their excitement. Now the part where life is being extra cruel...they wanted to know if I had ever considered that since Charlie had this mutation Henry could have it as well. Why would I consider that my other child also had a genetic mutation that would cause cancer? That is not something that ever crossed my mind not even once. So now Henry has to be tested as well. Henry is 2 and is healthy and has never had problems. I guess that doesn't necessarily mean much but I tell myself that to comfort me. Because hurting both my boys seems unnecessary and beyond unfair.
Then on top of that news as it turns out Charlie's white blood cell count more than doubled in two days. Infection? Bone marrow overreacting to surgery? Leukemia becoming more aggressive meaning he will need a round of chemo while we wait for a bone marrow transplant? No one knows yet. There are so many things they don't know about Charlie yet. He still remains a mystery in so many ways. Nothing mysterious to me though, he is my baby and I love him and I plan to fight for him. I will use my anger to fight for him because I don't know what else to do with it. Shaking my fists at the sky to yell at what feels like a malevolent god seems pointless. Asking why me seems pointless. Being angry that the world is full of shitty mothers who get perfectly healthy kids and don't have to go through this hell seems silly. So I will use it to fight. I don't know how, I don't know what to fight for but I just know I will fight.
I told my mom that I had to believe that Charlie was going to be okay. Because otherwise why put him through all this hell? What is the reason for this torture if he won't be okay? I understand that kids die every day after going through even worse but I can't just accept that he won't make it. In the middle of the night though when all is quiet all I can think is about how fucking awful it will be is if we go through all this and at the end of it all we have is a giant stack of medical bills and nothing else but painful sad memories.
There are a lot of people out there supporting us. A lot of people rooting for Charlie. Yet I still feel so alone. I'm obviously not but I can't help but to feel otherwise. I also feel pathetically sad. I read all these inspiring stories of cancer survivors and I do not feel capable of being inspiring. I feel capable of being angry and sad and that is my limit.
Monday, November 5, 2012
Our Journey Begins
I'm not sure where to start our story. There are so many places to begin and all of them painful to recount. I'm not even entirely sure what we could possibly consider the beginning of the story. I guess I can start with "we decided to have another baby", our third, our last.
We discussed everything we thought that there would be to discuss and decided to go for it and we did. I got pregnant quickly and all seemed well. We had our 12 week ultra sound and everything was fine. We had our 20 week ultra sound and were having a healthy baby boy who we were naming Charlie. We had a preeclampsia scare somewhere in the 2nd trimester and had another ultra sound everything was fine except I had mild polyhydraminos (excess amniotic fluid). No big deal really I had the same thing with Henry our second child. Then at 32 weeks I had an ultrasound to check the fluid levels, that's when things got scary. They found that the ventricles in Charlie's brain were enlarged. I didn't really understood what that meant other than anything involving brain was scary to me.
My ob referred me to a high risk OB and I went to see her. She said a lot of scary things, various syndromes, various things it could be. The only thing she could say for certain was that it wasn't just a variance of normal. Something was definitely wrong they just weren't sure what. They took blood to test for some common infections that could cause enlarged ventricles and I tested negative for all of them. I was offered an amnio but I didn't see the point so I declined it. Another ultrasound showed that my mild polyhydraminos had gone from mild to moderate. We decided I would see her once a week and have twice weekly NST's along with a weekly ultrasound to measure the ventricle size. I was also referred to a pediatric neurodevelopmental specialist and sent for a fetal mri.
We had the MRI done at Children's Hospital. I was the only adult receiving services there so it was odd. I didn't realize at the time that Children's Hospital was going to soon become our second home. If I had maybe I would have asked for the grand tour instead of trying to figure out my way around when I had a sick baby. I am getting ahead of myself though. The MRI was freaky but I made it through. The specialist met with us said except for the enlarged ventricles everything in Charlie's brain looked fine. He gave us some paperwork on hydrocephalus and discussed things like developmental delays and possibly needing a shunt. He said the same thing the OB had said that no one would know anything until he was born and we could get a better look at him.
The rest of my pregnancy was uneventful. A lot of appointments long NST tests as he always moved away from the monitor. My polyhydraminos went beyond moderate and I became very large and very uncomfortable so much fluid was unable to lay down at all. It was not an enjoyable end of pregnancy but it probably wouldn't have been either way the third trimester is never that fun.
The day Charlie was born was a really sunny day and our scheduled c-section was delayed. We got there at 8am and just sat around waiting and waiting and waiting. We knew this was the day everything would change and we would find out for certain what was going on with Charlie. We knew that there would be a team of pediatricians in the operating room with us waiting to examine Charlie. We also desperately hoped that it was nothing that he just had some enlarged ventricles and that was it. We were finally taken back for the c-section and I was prepped. The surgery started and it was very intense. It took a lot longer than normal and they had a really hard time getting him out.
When they pulled him out I couldn't see around everything I just caught a glimpse of a very blue baby. As it turns out though he wasn't blue from lack of oxygen he was born covered in bruises. His face was one giant bruise and he had tiny little bruises all up his arms, legs and trunk. They could not get his blood sugar to stabilize so they took him to the NICU to get stable. Once they got it stable they sent him to us but only for feeding and after he was done being fed he was expected to go back to the nursery. The only problem was he wouldn't feed. He wouldn't even attempt to latch on so we syringe fed him expressed colostrum. After his blood sugar would normalize it would quickly crash. The blood work also showed that his white blood cell count was through the roof. They took him back to NICU and placed a central line, got him on iv fluids, put in a feeding tube and started running blood tests to check for infections. They figured he for certain had an infection and they were almost 100% that it was CMV. They started him on three different antibiotics.
Days went by while we waited for results and he became jaundiced. He went under the bili lights and we waited, and waited. Slowly test results started coming in...all negative. They noticed that his spleen and liver were enlarged and that confirmed in their heads that he had CMV. The result for that test took a while in the meantime they did all kinds of examines on him. They did an ultrasound on his spine due to a sacral dimple, they did a chest x-ray as he was needing oxygen and they needed to know why, they ultrasounded his liver and his spleen. They did an MRI on his brain to look at his ventricles and brain structure. They gave him morphine to sedate him and it did not go well. A few hours after the MRI when he was supposed to have woken up and come out of sedation instead he stopped breathing. I won't recount that story as it was awful and I can't think about that moment in time without becoming a mess.
Long story short no infection all tests came back negative. His MRI showed enlarged ventricles and a smaller cerebellum and a brain bleed. Most likely due to birth trauma and his platelets being too low to help him clot. They gave him a transfusion to help clear up the brain bleed. They planned a repeat MRI for when he was 3 months old as he would be more developed by then. They consulted with the hematology department at children's hospital in regards to the spleen and his high white blood cell count and low platelets. At this point it all gets fuzzy there was a lot going on and Charlie had a lot of things going on in various systems. What it came down to was Children's wanted a bone marrow biopsy but the hospital he was at couldn't do it on a baby but there wasn't a doctor at Children's that had privileges to come do it there.
While they were trying to sort that out I kept googling his symptoms and two things always came up CMV which he tested negative for and Leukemia. I asked his doctors about leukemia and they told me it was unlikely as it was so rare especially rare to be born with it. As it turned out Children's disagreed with that and asked them to run a blood test to check for blasts in the blood. When his test came back with 2% blasts they had him transferred to Children's to the cancer floor. We were moved we talked to a lot of doctor's and what they basically said was they suspected JMML and we needed a bone marrow biopsy.
We were there for three weeks and a lot happened. What didn't happen was a diagnosis. What didn't happen was the biopsy results coming back. They told us he most likely had JMML but that he also most likely had Noonan's Syndrome which meant the JMML would clear itself up and no treatment would be needed. Finally they decided to let us come home they had finally weaned him off oxygen and he could go home on a feeding tube and they saw no reason for us to hang out there waiting for a diagnosis. Because of his recent oxygen requirement pulmonary came in to do a quick exam and some blood work. While we waited for that I talked to the home care department about the equipment we'd need for tube feeds etc.
That day was such a great day Charlie was coming home and finally we had been able to get him to latch on and breastfeed I was so excited that things were looking up. Then all of a sudden we weren't going home. We were being transferred downstairs and he needed to go on high flow oxygen asap and downstairs was the only place they could do that. I wasn't even given time to ask questions he was moved and set up on high flow oxygen asap. Finally someone talked to us and gave answers. Charlie was in respiratory failure and the carbon dioxide had built up to dangerous levels in his body. The high flow oxygen was to clear him out. So we were not going home, he was not allowed to nurse, he was not allowed to continue to try bottles. He was on tube feeds only. Xrays showed healthy lungs so it was determined his O2 requirement was a neuro issue not a lung issue. Something in his brain wasn't telling him to breathe hard enough.
This has gotten quite long and I'm still not where I want to be in the story so I will fastforward. A week later we were discharged. He went home on oxygen and a feeding tube and had a buttload of weekly appointments but he was home. He was home and we were happy. The schedule was rough as he had to eat every three hours no matter what but we made it work. There were a lot of doctor appointments and it was rough but we made it work.
He saw his pediatrician every week to have his head size measured one week she felt it had grown a bit too much and we were sent for an ultrasound and a meeting with neurosurgery. The ultrasound showed his ventricles had become dangerously enlarged and that combined with his recent bouts of fussiness/vomiting and constant sleeping meant he needed surgery to place a shunt ASAP. I left Jeremy and Charlie at Children's while I went home and packed up. He was being admitted immediately.
The next day all his doctors came to examine him and clear him for surgery. He had a blood transfusion and a platelet transfusion to get his #'s where they needed to be. All his doctors missed that he had the beginnings of a cold. He went through surgery and we knew getting him off his breathing tube may be hard as he already had an oxygen requirement. After surgery they came to find us and let us know surgery went well, the shunt was placed but he was moved to ICU because he couldn't come off the breathing tube for the moment. When we got to ICU they told us they had a hard time venting him and it turned out he had a giant mucus plug in the way. They had it tested and it came back positive for rhino virus...the common cold. The surgery made the cold worse immediately and was going to make it harder for him to recover from both. Being in ICU was rough as whenever he came out of sedation he would fight against the breathing tube which would cause it to clog up with mucus and then his stats would start dropping, they even lost his heartbeat completely once.
All that going on and still the worst part was when his oncologist came in to let us know that finally all his tests were back. He was exactly 2 months old and finally receiving a diagnosis. They found a mutation in his CBL gene which confirmed that he had JMML (juvenile myelomonocytic leukemia). Not only did they find a mutation it was a brand new mutation, I'm still not sure what that means for us. They also found he did not have Noonan's syndrome. That's when my world came crashing down. They kept telling us it was so likely for him to have Noonan's that we had placed a lot of faith in it. Sure he would have the issues that come with Noonan's but it also meant that his JMML would go away on it's own.
Instead he did not have Noonan's which means he will need a bone marrow transplant and have a 50% chance of surviving. I've never been one of those "bad stuff can't happen to me" sort of person. But never in my entire life would I ever even consider that my baby would be born with a rare form of leukemia. So rare that there are only 25-50 new cases...a year. That doesn't happen to people that isn't something you go through that just doesn't happen. So here I am typing his story while he is still at the hospital recovering while his dad stays with him. I'm home with our other two kids hoping that one of them is a bone marrow match and that he will be on the glass half full side of 50%. I'm not sure how it all came to his or how we got here. All I remember is lying in a dark room and hearing "your baby has enlarged ventricles" and now here I am googling survival rates for babies born with cancer. Who knew that was even a thing? Babies being born with cancer?
Everyone keeps applauding my strength in all this but honestly I don't feel strong. I feel an absolute mess. I just keep going and I keep a list of questions to ask the doctor's and I advocate for him and we make plans for him but really I'm dying inside. Part of me asks why this is happening to me but mostly I ask why it's happening to him. He's new. He hasn't done anything, been anywhere or know anything. He has no bad karma to atone for there is no reason for this. There is no possible reason that he should have to go through this. I will give you hydrocephalus if he needed to go through that I will give you that. It's fixable it sucks but it's fixable. The breathing issues fine I will take those too. Feeding issues great bring them on. But cancer? Are you freaking kidding me? 2 months old and he's spent more time at Children's then at home and he's going to be spending even more time there.
I know this is long and I don't necessarily expect anyone to read this I just needed to get out at least some of his story before it becomes a big blur in my head and becomes full of more chapters of his story. I am praying that he has many, many chapters to come because otherwise why? Why would a baby be born with cancer, go through the hell of treatment only to not survive? I don't understand what the point is and I have a really hard time with that whole "there is a plan" thing. Because this is a really shitty plan if this is a plan. When he is 20 he won't even remember this part of his life it's not like he can learn or grow from it. The most he can do is use his story of cancer as a baby to pick up chicks and really I think brain surgery as a baby was enough of a pick up line story.
We discussed everything we thought that there would be to discuss and decided to go for it and we did. I got pregnant quickly and all seemed well. We had our 12 week ultra sound and everything was fine. We had our 20 week ultra sound and were having a healthy baby boy who we were naming Charlie. We had a preeclampsia scare somewhere in the 2nd trimester and had another ultra sound everything was fine except I had mild polyhydraminos (excess amniotic fluid). No big deal really I had the same thing with Henry our second child. Then at 32 weeks I had an ultrasound to check the fluid levels, that's when things got scary. They found that the ventricles in Charlie's brain were enlarged. I didn't really understood what that meant other than anything involving brain was scary to me.
My ob referred me to a high risk OB and I went to see her. She said a lot of scary things, various syndromes, various things it could be. The only thing she could say for certain was that it wasn't just a variance of normal. Something was definitely wrong they just weren't sure what. They took blood to test for some common infections that could cause enlarged ventricles and I tested negative for all of them. I was offered an amnio but I didn't see the point so I declined it. Another ultrasound showed that my mild polyhydraminos had gone from mild to moderate. We decided I would see her once a week and have twice weekly NST's along with a weekly ultrasound to measure the ventricle size. I was also referred to a pediatric neurodevelopmental specialist and sent for a fetal mri.
We had the MRI done at Children's Hospital. I was the only adult receiving services there so it was odd. I didn't realize at the time that Children's Hospital was going to soon become our second home. If I had maybe I would have asked for the grand tour instead of trying to figure out my way around when I had a sick baby. I am getting ahead of myself though. The MRI was freaky but I made it through. The specialist met with us said except for the enlarged ventricles everything in Charlie's brain looked fine. He gave us some paperwork on hydrocephalus and discussed things like developmental delays and possibly needing a shunt. He said the same thing the OB had said that no one would know anything until he was born and we could get a better look at him.
The rest of my pregnancy was uneventful. A lot of appointments long NST tests as he always moved away from the monitor. My polyhydraminos went beyond moderate and I became very large and very uncomfortable so much fluid was unable to lay down at all. It was not an enjoyable end of pregnancy but it probably wouldn't have been either way the third trimester is never that fun.
The day Charlie was born was a really sunny day and our scheduled c-section was delayed. We got there at 8am and just sat around waiting and waiting and waiting. We knew this was the day everything would change and we would find out for certain what was going on with Charlie. We knew that there would be a team of pediatricians in the operating room with us waiting to examine Charlie. We also desperately hoped that it was nothing that he just had some enlarged ventricles and that was it. We were finally taken back for the c-section and I was prepped. The surgery started and it was very intense. It took a lot longer than normal and they had a really hard time getting him out.
When they pulled him out I couldn't see around everything I just caught a glimpse of a very blue baby. As it turns out though he wasn't blue from lack of oxygen he was born covered in bruises. His face was one giant bruise and he had tiny little bruises all up his arms, legs and trunk. They could not get his blood sugar to stabilize so they took him to the NICU to get stable. Once they got it stable they sent him to us but only for feeding and after he was done being fed he was expected to go back to the nursery. The only problem was he wouldn't feed. He wouldn't even attempt to latch on so we syringe fed him expressed colostrum. After his blood sugar would normalize it would quickly crash. The blood work also showed that his white blood cell count was through the roof. They took him back to NICU and placed a central line, got him on iv fluids, put in a feeding tube and started running blood tests to check for infections. They figured he for certain had an infection and they were almost 100% that it was CMV. They started him on three different antibiotics.
Days went by while we waited for results and he became jaundiced. He went under the bili lights and we waited, and waited. Slowly test results started coming in...all negative. They noticed that his spleen and liver were enlarged and that confirmed in their heads that he had CMV. The result for that test took a while in the meantime they did all kinds of examines on him. They did an ultrasound on his spine due to a sacral dimple, they did a chest x-ray as he was needing oxygen and they needed to know why, they ultrasounded his liver and his spleen. They did an MRI on his brain to look at his ventricles and brain structure. They gave him morphine to sedate him and it did not go well. A few hours after the MRI when he was supposed to have woken up and come out of sedation instead he stopped breathing. I won't recount that story as it was awful and I can't think about that moment in time without becoming a mess.
Long story short no infection all tests came back negative. His MRI showed enlarged ventricles and a smaller cerebellum and a brain bleed. Most likely due to birth trauma and his platelets being too low to help him clot. They gave him a transfusion to help clear up the brain bleed. They planned a repeat MRI for when he was 3 months old as he would be more developed by then. They consulted with the hematology department at children's hospital in regards to the spleen and his high white blood cell count and low platelets. At this point it all gets fuzzy there was a lot going on and Charlie had a lot of things going on in various systems. What it came down to was Children's wanted a bone marrow biopsy but the hospital he was at couldn't do it on a baby but there wasn't a doctor at Children's that had privileges to come do it there.
While they were trying to sort that out I kept googling his symptoms and two things always came up CMV which he tested negative for and Leukemia. I asked his doctors about leukemia and they told me it was unlikely as it was so rare especially rare to be born with it. As it turned out Children's disagreed with that and asked them to run a blood test to check for blasts in the blood. When his test came back with 2% blasts they had him transferred to Children's to the cancer floor. We were moved we talked to a lot of doctor's and what they basically said was they suspected JMML and we needed a bone marrow biopsy.
We were there for three weeks and a lot happened. What didn't happen was a diagnosis. What didn't happen was the biopsy results coming back. They told us he most likely had JMML but that he also most likely had Noonan's Syndrome which meant the JMML would clear itself up and no treatment would be needed. Finally they decided to let us come home they had finally weaned him off oxygen and he could go home on a feeding tube and they saw no reason for us to hang out there waiting for a diagnosis. Because of his recent oxygen requirement pulmonary came in to do a quick exam and some blood work. While we waited for that I talked to the home care department about the equipment we'd need for tube feeds etc.
That day was such a great day Charlie was coming home and finally we had been able to get him to latch on and breastfeed I was so excited that things were looking up. Then all of a sudden we weren't going home. We were being transferred downstairs and he needed to go on high flow oxygen asap and downstairs was the only place they could do that. I wasn't even given time to ask questions he was moved and set up on high flow oxygen asap. Finally someone talked to us and gave answers. Charlie was in respiratory failure and the carbon dioxide had built up to dangerous levels in his body. The high flow oxygen was to clear him out. So we were not going home, he was not allowed to nurse, he was not allowed to continue to try bottles. He was on tube feeds only. Xrays showed healthy lungs so it was determined his O2 requirement was a neuro issue not a lung issue. Something in his brain wasn't telling him to breathe hard enough.
This has gotten quite long and I'm still not where I want to be in the story so I will fastforward. A week later we were discharged. He went home on oxygen and a feeding tube and had a buttload of weekly appointments but he was home. He was home and we were happy. The schedule was rough as he had to eat every three hours no matter what but we made it work. There were a lot of doctor appointments and it was rough but we made it work.
He saw his pediatrician every week to have his head size measured one week she felt it had grown a bit too much and we were sent for an ultrasound and a meeting with neurosurgery. The ultrasound showed his ventricles had become dangerously enlarged and that combined with his recent bouts of fussiness/vomiting and constant sleeping meant he needed surgery to place a shunt ASAP. I left Jeremy and Charlie at Children's while I went home and packed up. He was being admitted immediately.
The next day all his doctors came to examine him and clear him for surgery. He had a blood transfusion and a platelet transfusion to get his #'s where they needed to be. All his doctors missed that he had the beginnings of a cold. He went through surgery and we knew getting him off his breathing tube may be hard as he already had an oxygen requirement. After surgery they came to find us and let us know surgery went well, the shunt was placed but he was moved to ICU because he couldn't come off the breathing tube for the moment. When we got to ICU they told us they had a hard time venting him and it turned out he had a giant mucus plug in the way. They had it tested and it came back positive for rhino virus...the common cold. The surgery made the cold worse immediately and was going to make it harder for him to recover from both. Being in ICU was rough as whenever he came out of sedation he would fight against the breathing tube which would cause it to clog up with mucus and then his stats would start dropping, they even lost his heartbeat completely once.
All that going on and still the worst part was when his oncologist came in to let us know that finally all his tests were back. He was exactly 2 months old and finally receiving a diagnosis. They found a mutation in his CBL gene which confirmed that he had JMML (juvenile myelomonocytic leukemia). Not only did they find a mutation it was a brand new mutation, I'm still not sure what that means for us. They also found he did not have Noonan's syndrome. That's when my world came crashing down. They kept telling us it was so likely for him to have Noonan's that we had placed a lot of faith in it. Sure he would have the issues that come with Noonan's but it also meant that his JMML would go away on it's own.
Instead he did not have Noonan's which means he will need a bone marrow transplant and have a 50% chance of surviving. I've never been one of those "bad stuff can't happen to me" sort of person. But never in my entire life would I ever even consider that my baby would be born with a rare form of leukemia. So rare that there are only 25-50 new cases...a year. That doesn't happen to people that isn't something you go through that just doesn't happen. So here I am typing his story while he is still at the hospital recovering while his dad stays with him. I'm home with our other two kids hoping that one of them is a bone marrow match and that he will be on the glass half full side of 50%. I'm not sure how it all came to his or how we got here. All I remember is lying in a dark room and hearing "your baby has enlarged ventricles" and now here I am googling survival rates for babies born with cancer. Who knew that was even a thing? Babies being born with cancer?
Everyone keeps applauding my strength in all this but honestly I don't feel strong. I feel an absolute mess. I just keep going and I keep a list of questions to ask the doctor's and I advocate for him and we make plans for him but really I'm dying inside. Part of me asks why this is happening to me but mostly I ask why it's happening to him. He's new. He hasn't done anything, been anywhere or know anything. He has no bad karma to atone for there is no reason for this. There is no possible reason that he should have to go through this. I will give you hydrocephalus if he needed to go through that I will give you that. It's fixable it sucks but it's fixable. The breathing issues fine I will take those too. Feeding issues great bring them on. But cancer? Are you freaking kidding me? 2 months old and he's spent more time at Children's then at home and he's going to be spending even more time there.
I know this is long and I don't necessarily expect anyone to read this I just needed to get out at least some of his story before it becomes a big blur in my head and becomes full of more chapters of his story. I am praying that he has many, many chapters to come because otherwise why? Why would a baby be born with cancer, go through the hell of treatment only to not survive? I don't understand what the point is and I have a really hard time with that whole "there is a plan" thing. Because this is a really shitty plan if this is a plan. When he is 20 he won't even remember this part of his life it's not like he can learn or grow from it. The most he can do is use his story of cancer as a baby to pick up chicks and really I think brain surgery as a baby was enough of a pick up line story.
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