"Sit, be with them, love them, share in their emotions."

There have been several occasions where I've attempted to sit down and write a blog, but to be honest, there has been so many little details and information thrown around the past few days that I was exhausted. It was a big weekend for Conley, and while I was very excited to see him extubated and awake, I was also very nervous about what that would bring.

I know I've talked before about making sure Conley's comfort was the priority through all of this, and there have been recent times that he has been inconsolable and in distress, leading us to worry that something more serious was wrong again. There are so many things happening in his body right now, making it really difficult to pinpoint what the symptoms represent. Therefore, as a result, when symptoms present, such as inconsolable crying and abdominal distress, there are several tests done to see if he has something more serious occuring. For example, on Monday, while it was a very exciting day for everybody to come back to work and see Conley awake and smiling, he also presented with several symptoms that made us worried he was bleeding in his belly again. But not many people knew this. It was hard for me to wrap my head around all the people coming in so excited to see him off the breathing tube and awake while in the back of my head knowing that he might eventually be bleeding again. He had to do an x-ray, echocardiogram, and an ultrasound, in addition to tons of blood work, only to find out that he was just having severe gas. Talk about trauma. The presentation that my son had when he was bleeding out and needed emergency surgery looked the same as having gas?! If we were at home, I wouldn't be able to do all of these tests by myself to know if he is having gas or if he was bleeding. Most mothers would never think "oh, my son is bleeding in his belly" when actually they just have gas. Sigh. It sure was a rollercoaster. And while it seems easy to know it was gas in hindsight, even the doctors were terrified, which helped comfort my concern that I wasn't just crazy! Of course, I was so excited for everybody to see him awake and smiling, and breathing on his own, but I also had to worry about heading down the same path that we did just one week prior to this occasion.

There have been many positive steps for Conley these past few days. Obviously, the breathing tube came out and he's showing a range of affect again. He has also been switched back to his regular feeding regimen and off TPN (which is replacement nutrition if someone is unable to eat). He is back on regular hemodialysis instead of continuous CRT. He has started physical therapy and occupational therapy to help stimulate his muscles again. These are all huge steps for Conley. However, he continues to present with conflicting issues that are having specialists make decisions based on a risk/benefit scale. No decision is free of potential complications.

As I wrote before, after finding out about a potential clot obstructing blood flow to and from the heart, Conley was started on aggressive anticoagulants to not only help reduce the size of the clot, but also to prevent him from forming additional clots. Obviously, that led to serious internal bleeding and emergency surgery, almost costing him his life. During all this chaos, some genetic screening was done and it was found that Conley is a carrier for what is called Factor V Leiden Thrombiphilia, which is a genetic disorder of blood clotting. Basically, if put in situations such as surgery or blood transfusions (which he does often!), he has an increased propensity to clot, blocking blood flow to certain organs. This is a big deal since Conley is frequently on heparin during hemodialysis, which is a blood thinner/anticoagulant, so he does not clot when attempting to perform adequate dialysis. While it seems only necessary for him to be a medication in order to prevent clotting, the last time a more aggressive approach was used, he bled excessively. Given all the updated information, the hemotologist recommended that we use a continuous heparin drip which should hopefully prevent further clots without a significant increased risk of bleeding. We shall see. The heparin drip started last night.

I've had a lot of time to really sit down and contemplate the things we've experienced in the past few months. For most who know me, I am not a very religious person, though I'm not opposed to religion either. I am actually very open to understanding religion and having conversations about it. I believe everyone has their own coping methods and ways of comfort. Facing such a horrendous situation has made me really question the idea of prayer. I recently started going to the chapel, and before you get too excited about my intentions, let me tell you that part of me going there was to question the idea of prayer. I have wondered many times that if so many people are praying for Conley, then why do horrible things keep happening? What kind of person would continue putting a baby through such pain and suffering just to teach a lesson? On top of that, our experience of course has led many people to tell us they are praying for us, for Conley and for our situation. I think the hardest part of all the praying is that when people tell me they are praying for a certain outcome, and it does not happen, or it actually ends up the opposite, it almost feels like Conley (or us) are not worthy of the prayer and that we have somehow failed others or God in whatever lesson he is teaching us. And that has led Jonathan and I to become even more angry and seperate from the idea of prayer and God. For people who were sitting in the middle of the spectrum with regards to religion, there is this idea that prayer can help us move to a positive place and when that does not happen, it almost forces us the opposite way of not believing instead of reinforcing the idea that prayer works.

I don't mean to start controversy with this post, but I am just being honest about someone who is not religious and how religious messages can impact our ability to believe in a higher power. This the specifically why I have asked people to not pray for a certain outcome and to focus more on the process that we are experiencing as opposed to a specific road we should end up on. Each time I have gone to the chapel, I have asked for Conley's comfort and for him to suffer less, and have focused more on the process than on the outcome of our circumstances. It's almost like I had to truly accept the fact that my son may die in order for him to live. And let me tell you, there have been times that I thought he may die, but I hadn't really accepted his death. I wasn't ready, even last week. But this time, I really surrendered and understood that the prayer I had of his comfort and easing his pain may lead to his death. And I was genuinely "okay" with that. Although that would increase MY suffering, it would ease HIS pain. That's all I wanted. This made me realize that prayer should be selfless. You don't pray for the outcome you want or the result that would help you suffer less. You pray for the process regardless of the outcome. And then, you can be thankful for the process, instead of selfishly living in the outcome.

For those of you that are religious and turn to God for a way of getting through certain experiences, and you encounter someone like me who is not so sure, I ask that you contemplate how you present prayer and religion to them. I will gladly elaborate for those who are interested. To quote a good friend who is actually very much with God, "It's not fair that people say, just believe in God or give your situation to God...it's superficial and can be very short sighted. Hurtful even. It doesn't listen to the person who is experiencing the pain. It doesn't validate their feelings. It doesn't walk alongside them as we are called to do. Sit, be with them, love them, share in their emotions." Maybe my purpose in all of this is to help others understand that the way we speak about these topics has been somewhat lost...

I read an amazing blog the other day that pretty much captures exactly what I have been struggling with:
http://www.feelingsandfaith.net/not-everything-happens-for-a-reason/

Circles

Progress, as a relative term, has quickly changed to dancing in circles. Initially, I would hold on to any little positive that I could find, such as discontinuing a sedation medication or an incision healing correctly. And while it is important to be grateful and hopeful for those small achievements, as a mother and an advocate for my child, my mind quickly wanders to the other side of the coin that leaves me to question the outcome of the situation; after all this is over.

To others who do not have to be in this difficult position of understanding how the details of Conley's care can affect the quality of life as he prepares for transplant, it may be easier to cling on to any small positive as a way of maintaining hope in such a devastating situation. That is what I did; for weeks. But it is unrealiatic to remain in that mindset. As we say, our blissful ignorance has been replaced with the crucial reality. The outcome of his condition continues to remain unclear because although there have been positive steps in the small, day to day tasks, Conley is still very very sick. While none of the doctors think that any medical intervention has been excessive at this point, it would be ignorant to not allow ourselves to understand the capacity of how this can potentially impact Conley's quality of life moving forward.

The heart, lungs and kidneys are all connected, and up until now, only Conley's kidneys have been significantly impacted. We have had moments of sporadic issues with his lungs and his heart, but those were always temporary in relation to maintaining a solid position with his kidneys through dialysis. The impact that his heart and lungs have received in the past two weeks is still unknown, and there is a potential for them to continue being affected as long as Conley remains in such a critical condition. The paralytic he is on can have short (and long term) affects on mobility and strength. So why we continue to fight for stability, the outcome of the situation is still unknown. Will Conley still be the happy, feisty, warrior he has always been, or will there have been some permanent damage in other areas that can affect such a spirit? As a mother, this is hard to swallow. We wait so long and work so hard to master each milestone with a chronically ill child, and knowing they may not return to what they were is a blow to my heart. The hard part of all this is the impact of the decisions we make now are not easily understood until it is all said and done. The question of will he survive is not the only question we need to ask; it now has to be what will he be like if he survives. If you would have asked me years ago about a hypothetical situation similar to the reality we are facing today, my response easily is that I would do anything to make my child survive. But as I sit here in the midst of all of this, the answer to that question becomes much more complicated.

As I mentioned before, I find myself in a position of pure surrender to the process we are in. Trust that my surrendering is not the same as giving up. I have not given up on Conley or his medical team. Actually, I've become quite impressed with how amazing they are and how much they value my opinion as a mother. But I have come to understand and appreciate that it is not my job as a mother to learn every single aspect of his medical care while he is in such a critical position. I always thought the more I knew, the better able I was to serve as his mother, but I am realizing that the fight and anxiety of too much knowledge can become more detrimental to the process. I still come and sit at the hospital all day, every day, even though there is nothing to do. Sometimes I can't even touch him or talk to him because it can be too over stimulating. But, I'm still here and he knows that.

I have noticed a slight change in Conley within the past 24 hours. I think, like me, he has finally surrendered to the process by not fighting the medication or sedation, which in turn has made him more comfortable and suffer less. While part of me feels relieved by this observation, the other part of me worries that he has lost his fight; his feisty attitude. But, then I remember my surrendering does not mean I have given up or lost the fight. It just means that I will allow the process to happen, and allow my heart and soul to be open; to be free.

For those of you who pray, I ask that you pray specifically for Conley's comfort; that he does not suffer, and that he can allow himself to be free of any burdens that he may have, so he can rest comfortably. This is what I ask. As much as I want to see Conley awake and smiling, that desire is much less important to me than his level of comfort and suffering. It would be selfish of me to ask and pray for something that would make ME feel better or comforted, or to ask for a certain outcome that I want. So in turn, I ask that we all focus our prayers around Conley, and what would make his heart be settled, regardless of the outcome.

Surrender

I've struggled to find the right words to describe the past few days, and still as I sit here writing, there are no words that can capture how much our hearts have been torn to pieces. Sometimes I think to myself that if I don't talk about it, then it's not real. But, the reality of the situation cannot hide forever, and at some point, we have to come to terms with that.

Jonathan and I have spent the last 36 hours grieving over a situation that doesn't have a positive prognosis. We both always agreed that Conley's quality of life was the most important thing for him and for us as a family. Conley's spirit and personality shines so bright, and he exhibits a desire for genuine happiness that cannot be taught. 

Going into his initial procedure to remove the tumor, we always knew that the doctors were concerned about how his body would react to such a traumatic surgery, particularly given his other medical issues. Although we have had some sporadic progress, the reality of the situition is that we have been faced with many complications thus far, that have been leading us and doctors to question weather Conley we'll make it through this situation. 

As I've mentioned in previous posts, Conley has already had two setbacks with excessive bleeding in his belly, in addition to having difficulties with dialysis and finding a clot in a place that limits blood flow to and from the heart. While these issues alone do not typically cause a problem because there are interventions that can be done, the combination of all of these issues does not suggest a positive prognosis. While I feel like we've had many moments of life or death situations throughout this journey, there was a moment yesterday when Conley was almost out of options. He was too swollen from surgery to adequately do dialysis, and the impact of not doing dialysis made his lungs collapse and his heart unable to have adequate blood flow.

There have been several times throughout our journey with Conley, starting from in utero, that conversations have come up about whether Conley would survive, and somehow, he always found a way. We have never had to REALLY talk about the 'what ifs' because it has always worked out. It never gets easier to have that conversation with a doctor, let alone with your spouse. Calling Jonathan on the phone yesterday to let him know he should come down to the hospital to be with Conley was probably one of the hardest phone calls I've ever had to make. 

We sat down with a range of specialists, including a psychologist and the palliative care team (a team to help with relief of symptoms and improving quality of life) to talk about the reality of the situation we are facing. We all talked about how Conley has separated himself from other babies throughout his medical trials based on his happy, feisty and warrior like spirit, as he has always had a smile on his face despite anything that has happened to him. Even after being admitted to the ER for bleeding, the next morning he was up smiling  and clapping like nothing had happened. He beat all the odds in utero and in the NICU so he could spend a solid eight months at home, and no one would ever have predicted that. That is a miracle in itself. But as I've mentioned in previous posts, since his surgery two weeks ago, the Conley we know has not returned. We are not giving up on him and we continue to wait for him to bring back the smile and happy go lucky spirit that he's always shown, but as the days trickle away and the complications add up, Jonathan and I have been forced to face some difficult questions about the type of life we think Conley would want. 

One thing I know for sure is that Conley has always been able to tell us when he's okay, or when something is wrong. Despite any medical intervention, Conley has always called the shots. I feel like I've always had a powerful connection with Conley and many doctors have commented on how much intuition I have when it comes to knowing him, advocating for him and making decisions on his behalf. There's never been a question in my mind about how I would do anything to make sure he was given the best quality of life. Until now. Seeing him in this state makes it hard to believe the decisions we've made are the right ones. He is still intubated, heavily sedated, restrained to the bed and being given a tranquilizer and paralytic. If I knew this was only temporary, I could do it, knowing my baby boy would easily return in a few days. But there is no way to know. It would be "easy" to know there was no option; no medical intervention. But, when you, as a parent, are left to decide if these interventions, and actions are worth the pain and suffering of your child, the answers become so complex.

Last night I stayed up and watched videos of Conley over the past couple months, and all I can think about is how much I miss him and how I would give anything to see him smile again. Sometimes I feel myself thinking selfishly about how I would feel so much better if he would just wake up and give me a sign that he's okay, like clap is hands or make fart noises. That all this medical intervention is worth it, and that there will be a happy ending to this part of his journey so we could have eight more months together.

There have been many talks about how medical technology has transformed into a live saving field, yet somehow quantity in life has surpassed quality of life. While Conley seems to have made it past a serious hurdle once again, there are several long term issues that have come to light, making our end journey of a kidney transplant more difficult, and potentially impossible. Maybe that the constant fight and ongoing battle will not end victorous regardless of how much ahonui we have. I wish I could wrap my head around all of this, and I've tried. But somehow along the way, I've realized that the best thing I can do for both Conley and myself, is to surrender completely to the unknown. And listen to him, as I always have. He will guide us, and give us what we need to move forward; whatever direction that may be.

Ahonui

Conley is back from surgery and all went as planned. Bleeding appears to have stopped and today marks Day 1 of our new path to recovery. There is some fluid that accumulated in his lungs during surgery, likely due to not having dialysis today. So, he will stay intubated until after dialysis tomorrow.

On a side note, Conley aquired the name "Warrior Pumpkin" along the way, thanks to Nana. It has followed him around these past few months. And now, I've fallen captive to another nickname, Ahonui, thanks to my friend Lucinda.

Below is a small (modified) description about what this means:

This name is Hawaiian, and commonly translated as "patience." However, that translation into English can be misleading, because, as embodied in the word "Ahonui", it doesn't carry quite the same meaning. Generally, when we talk about patience in English, we mean the ability to suffer hardship, or discomfort, or pain, without complaint. There is a sense of inner strength or courage about it, but it's essentially a passive concept. Something bad is happening to you, but you put up with it bravely for as long as it takes. As admirable as that concept might be, it doesn't carry the full meaning of "Ahonui."

The most important element when talking about Ahonui is "aho," and it also means "breath, to breathe," and "to put forth great effort." Though one must put forth great effort to accomplish his aim, that still isn't enough. The word "nui" means "big, much, many; something extending over time, or something very important." "Ahonui" is the word we use to give us a deeper understanding of love. It means "patience." And, it is also the word for "perseverance." This is not the patience of waiting in a line. It is the persistence of knocking on a door until you get an answer. It is not the patience of waiting out a storm. It is the perseverance of moving through a storm to your destination. It is not waiting to get healed. It is using everything you know and doing everything you can to make the healing happen. "Ahonui" can also be translated as "many breaths," the act of moving toward something you want for as many breaths as it takes.

Perseverance does not work on a part-time basis. Fortunately, there are many examples in this world of people who have persevered in the face of seemingly insurmountable odds, and who have accomplished more than was thought humanly possible. Imagine the patience, the persistence, the suffering, the perseverance, the AHONUI that Conley has shown to all of us. What will give you the strength to persevere in the direction of your dreams and desires, plans and goals, wishes and healings, is the love you have for something that you decide is so important, so valuable, so good, that nothing at all can replace it in your mind and in your heart. If your love is strong enough, you will have the ahonui to keep going in spite of doubt, disappointment, fear, misunderstanding, and all the people who tell you that what you want is impossible. In this infinite universe, the only impossibility is whatever you never attempt, and the only failure is when you decide to give up. Everyone knows how much Conley loves life, as shown by his happiness and smiles despite his medical complexity. His love for life is what's drives him to keep fighting; to keep shining his ahonui. And that is what makes him so special to us all.

A birthday to remember

I've had many mixed emotions leading to today. It's definitely not the way any mother wants to spend her child's birthday, let alone the 1st birthday. We obviously spent many holidays in the hospital and it never gets easier. But, today has also helped me remember Conley before all of this happened. That sweet, charismatic, strong, loving, and feisty boy we all grew to admire. Nurses who didn't know Conley pre-surgery often ask me, "Does he smile?" "Does he talk?" "Does he cry?" My first reaction has been anger and sadness, thinking that somehow who Conley is has been lost in all of this. It's sad to me that they didn't know Conley before all of this, how happy he is, how much he smiled, how he loved saying mama and clapping. How happy he made all of us. I really miss him, and today only makes that harder.

I don't know quite how to celebrate his birthday given the circumstances we are in. I should be overwhelmed and stressing about where to have his party, or what theme it will be, and what flavor smash cake I want. He shouldn't be on life support, restrained to the bed, with his stomach cut open and heading to surgery this afternoon. There are many times I have been strong despite the path we've had, but today I'm allowing myself to not be okay, to not be strong or happy. Today is what it is and I've accepted that.

A recommendation from one of Conley's doctors gave me a great way to not only help others know Conley's true personality and who he was before surgery, but to also celebrate his first year of life. I printed off several pictures of him throughout the year that resemble what an amazing boy he is. Yes, I was that lady crying in Staples as I looked through pictures of our journey so far. I made a collage of all these pictures and placed it on the wall right by his crib so everybody that came into the room could see what a journey he's had so far. It's pretty badass considering most of the supplies were donated by the hospital.

While doing this, it made me remember how sick he was in the NICU. Doctors that have known him from the beginning came in and helped me reminisce to other times we made it through setbacks. One picture I printed was the day before his first surgery at two days old, and I showed that to his same surgeon that came in to prep me for his surgery this afternoon. Another picture of daddy holding him for the first time brought memories back to his nephrologist. These moments made me remember that we've been here many times before, in utero and in the NICU. But, we overcame all that, and had eight months at home, making all those times a distant memory. That gives me hope and confidence that we can do it again. Plus, who else will be able to say they had their stomach stitched back together on their first birthday. That's going to be a pretty good college essay!

Thank you for all the birthday wishes.

Back to the beginning

I don't even know where to begin. I feel like a broken record. Unfortunately, Conley was rushed to the OR for surgery yesterday afternoon due to bleeding in his belly. The bleeding was different than last time because it wouldn't stop. It is believed that the anticoagulants that Conley needed for the clot in his chest is what caused the bleeding. There was no specific site of bleeding like last time when the mass ruptured, and it was more of a oozing that was occurring in multiple sites that had recently been operated on. Our surgeon said this is the window of time that they typically see bleeding, particularly in adults that have had liver transplants, and since Conley did not have any bleeding immediately post-op, than its only safe to assume the anticoagulants started the bleed.

Conley's presentation this time around was very different. Instead of being lethargic and weak, he was very uncomfortable, inconsolable and in pain. His tummy had grown significantly in a short period of time since it was filling with blood. They tried everything they could with pain management given his kidney problems and his inability to eliminate medication. This was torture for both Jonathan and I as we literally were forced to watch him struggle for several hours despite dose after dose of pain medication.

The first method they tried was reversing the effects of the anticoagulants by giving him more blood and clotting factors, and waiting to see if the bleeding stopped. They told us we were going to wait 4 hours to see...do you know how long 4 hours is to a parent when they are watching all of this happen. I demanded to talk to a surgeon because the nurses kept telling me "I can't answer that question." And I finally said, "then get me someone who can." Waiting and waiting, being patient and all this crap to see what will happen. It infuriates me, especially when you can't control his pain or comfort level.

Finally, the surgeon came in and realized that the medication to reverse the effects of the anticoagulants were not working, and decided to take him to surgery. Surgery went well as they packed him stomach with gauze to stop the bleeding. They left his tummy exposed with a sterile sponge in place to prevent infection. He will be sedated and intubated until he goes back to surgery on Tuesday (his 1st birthday) to check to bleeding and hopefully close up his tummy.

Our surgeon made it clear that this was definitely a huge setback, although not unexpected. However, he said that Conley is in a much better place than he was right before surgery. Seems to me we are right back at the beginning. He's pumped full of pain medication and back in the ICU with hourly stimulation. They told me not to touch him because he's been sensitive to stimulation. Really? I've told you that for weeks and no one listens. In fact, they do the opposite and tell me they have to touch him. Well, so do I.

Moving forward this creates issues for Conley now that he cannot have the anticoagulants due to risk of bleeding, but he needs them for the clot that's formed in his upper chest. Our surgeon said that's the risk we have to take, and lesser of the two evils at this point.

Back to the grind I go to advocate and protect this pumpkin, now that I know exactly what could happen with sleep deprivation in an infant. I've had many momentarily lapses of being done, and exhausted, and just not wanting to endure this anymore. But then I think of how hard Conley is fighting, and it's only fair to him that I keep fighting as well. Back to the guard post I go.

If we're going to be a frequent flyer, we might as well fly first class

We were finally moved off the ICU tonight, and I've learned that when someone said "today," it usually means "a few days" in hospital time. However, we were finally moved to what they call the "Hemmoc" floor, which is mostly for Hemotology or Oncology patients. Most of these patients are either in the hospital long term or are frequently in and out. They try to make this floor more accommodating for children and families that are here often. It is pretty amazing. Each ro has a mini fridge and full bathroom with a shower. There is a "snack shack" that is stored with all kinds of snacks, breakfast meals, frozen dinners, drinks, coffee, etc. These are donated by a nonprofit called Big Love (I've made a mental note to look them up and get involved). They also have volunteers that serve fresh dinner once a week. While none of us want to be here, ever, or repeatedly, I am amazed at how much easier it is on the parents (and children I imagine) to have some special home like ideas. Kids can run to the fridge and grab snacks, or parents can wander down the hall to grab coffee or have meals from home stored in the room. For someone that's slept many days here, it makes a HUGE difference in the way you approach such a shitty situation. It makes everything less depressing.

Probably the most comforting part of the this floor is that they encourage and promote sleep! For both the children and the parents. What? That's unheard of elsewhere. There is less stimulation, less intruding and minimal "checks." As expected, Conley has had a really hard time sleeping lately because he is constantly being prodded and probed. Every time he falls asleep, someone would come in the room to do something or say something. He's become more hypervigilant and paranoid, watching everyone's moves. Along with his continued withdrawal, which he's having a hard time kicking, doctors believe he's developed what they call "ICU psychosis." You can only imagine what that means. So, we are hopeful that this move will be beneficial for all of us. And I have to give a shout out to our nephrologist who pulled some strings to get us on the unit. Typically, they do not take hemodialysis patients because of the hassle of having to transport them to another unit for dialysis three times a week. But, somehow it worked out and we are here. Very grateful for these small things that can have big impacts on our emotional and mental health. I'm hoping that this is the start of an journey to (better) recovery.

One lucky boy...

Over the past couple months, we have been so lucky to receive such wonderful, loving and inspiring comments, emails, and texts. I've decided to dedicate a post specifically highlighting many comments that really touched me (this is by no means all of them!), as a way for us to look back on in case we need some additional guidance along the way. 

OMG! What a warrior that Conley is! No matter what life throws at him, he comes through it....he is an amazing fighter....so much spirit....

Prayers are amazing and none of us know what it's like to be in the situation that's been handed to him,his parents and the Medical Staff. I as well as many continue to lift Conely up in our prayers. What an amazing praise that he has such a peaceful spirit and show the good in all he's going through. A clap of the hands and a smile are worth a pocket full of miracles. 

I have fallen in love with my little miracle warrior

Conley's smile and happiness despite all of this reflects your love, caring and commitment.

I just want you to know that Conley, you, Jonathan, and Choice are in my thoughts and prayers throughout the day, everyday. That little boy is superman and a miracle. You are lucky to have him and he is so supremely lucky to have you and Jonathan there for him. I've said it before and I mean it, you are the strongest woman I know and that boy has your genes! He proves it every day with his smiles. 

I feel like a broken record but you are one strong ass woman and Conley's spirit and fight is a force to inspire all of us. I think of your family often and sending nothing but positive energy and prayers your way. I'm always reading all your posts and cheering Conley on. I admire you - this journey is one that not many could endure.... Conley is so lucky to have you as his advocate and loving mom. You are amazing - and in case you don't hear it enough ...YOU ARE AMAZING and so freaking strong.

I am just so moved by your family's handling of his situation. I don't know what I can do but I am sincerely offering my help, love, and good wishes. I think you are an incredible family and I know this is such a difficult time, but I love watching how you all are living in the now and enjoying every moment. I don't mean to be intrusive but just wanted to express how Conley's life is touching me.

Super mom. And all of the titles you currently hold. 
I am so proud of the way you keep a positive attitude and keep your family afloat. 

I keep reading up on Conley and life that surrounds you currently. What an incredible little man and family you have.

Admire the way you love your boys.

Your family and that boy truly embody "Ahonui" - patience shown through perseverance in the Hawaiian language. That is my new name for him.

I am always eagerly waiting for updates and this one is filled with promising news! Me and the boys love to talk about Choice and Conley... They are kinda obsessed with your videos 

I am happy to read that the team is gathered around putting their best brain cells and thinking on the case. With you leading them to do their best work, it has to turn out good for Conley.

That is one seriously amazing kiddo you have there!!!!!!!!!

You are all warriors and stronger as a unit together then any one soul alone. Thank your for sharing this update with us during what I assume during this difficult time was one of your only still moments. Sending all the positive energy and love we have to the Weems family on this continued journey.

You have unfathomable courage to be able to share this while trying to keep calm and collected. Conley's strength is incredible and we hope it becomes a beacon through all the complications.

You are an amazing Mom. I'm praying for you guys every day and my heart breaks that your family has to go through this trial. Conley is so lucky to have your fighting spirit.

Let's be real- sometimes shit just sucks. That's it. Let's get it out of the way and say- fuck this. Now...love you all and know that every time we have a smile or thing with our boys we hug them a little tighter and a little longer hoping that through space and time that extra gets to you and your boys. True character comes out in crisis and my what a true classy show you're putting on. 

He's on a lot of people's mind. I know he's on mine. He's touching so many people, as are you with your families strength. I can't imagine how scared you are. Please know we are all supporting you over here and rooting for Conley.

This kid is destined for greatness. His tenacity is amazing! Go Conley, go!!! 

While I don't quit have the right words friend my heart is with you and I have an abundance of gratitude he is strong as always and out surgery

You and your family are incredible. That sweet boy is stronger than everything that is thrown his way.

No matter where I am, holding y'all in my thoughts. 

I don't know if I can find the right words - I think your strength is admirable. You and your precious little ones are in my thoughts so often. Praying that there is a light at the end of this tunnel for you all.

Sending your family good vibes, Chardonnay! I think about our time in elementary school and how you always were the girl that could "do anything". You were smart (really good at multi-math!), super athletic, easy to be around. From your posts over the past few months I certainly see your son is a fighter w/those same traits!

That little boy is a FIGHTER. And he's lucky to have such attentive, smart, loving caregivers.

Your spirit and grace throughout this journey have inspired me as I cheer your family on from afar. Know many prayers follow you.

There's no easy journey in life, but the grace of some human beings don't wait to shine. Conley seems to teach you, and us through you, something special. He's done already more than many of us will ever do. Respect big boy ! And prayers for you all

 What a resilient baby and family!! You guys roll with the punches better than anyone I've ever known! Hoping things continue on this trajectory! 

You've got an amazing fighter and champion there! Setting all sorts of PRs and records every day already in his precious, young life.

My heart breaks every time I read your posts; yet I never cease to admire the strength of this little man. And your strength too, of course. We all, friends and strangers, are always thinking about Conley and your family and hoping that our collective energy will help turn the unfairness around. Fight on and all the best to you

Thanks for reminding us to be grateful for our gifts and to appreciate the loved ones around us. Just as you kicked butt next to me on the soccer field so many years ago, you continue to inspire with your strength and determination. Lots of love and prayers to you and your whole family.

I am in awe of you for the courage and strength with which you face each day on behalf of Conley. Thank you for showing the rest of us how to live in the moment, how to treasure life, and how to love each other well.

I'm in tears reading this. You all are in my prayers for peace and strength, and that sweet boy is as well for his complete healing. Everyday when I see your posts, it really help put other things in perspective. Conley is such a miracle fighter and an incredible inspiration! His smile is so priceless and beautiful.

All I can think is how very proud of all of you I am and am honored to be your friend. You amaze me and thank you for your honesty and allowing us to be on this journey with you. Of course we are always praying for all of you but thank you for showing us that nothing is impossible with love and to appreciate every moment. 

Warrior Pumpkins have a special place in the universe... so Conley gets to keep showing his daddy how he's tougher then all his daddy's muscles combined!!

Conley the crusader of little warrior pumpkins everywhere....he will come through with flying colors to show others what the rainbow really looks like.... be well little one and may health and love guide you and your family through these tough times

Hepatoblastoma

The oncologist came to speak with us today about the plan of action for chemotherapy. We will likely wait about two weeks to start since Conley's surgeon wants to wait until his tummy heals completely. Conley's liver cancer, hepatoblastoma, was diagnosed at Stage 2, primarily due to the ruptured mass. The protocol for Stage 2 liver cancer is 2 "cycles" of chemotherapy (6 weeks), but due to the rupture, it is now up to 4 "cycles," which would be 12 weeks. Each cycle is 3 weeks long. He will receive three different medications through the course of treatment, each at different times, but at least one medication a week. Apparently, there is a very strict protocol that is followed based on a case by case basis and a variety of measures. At the beginning of each cycle, Conley will be hospitalized overnight to watch his reaction and blood count to one of the medications. His treatment will change week to week based on lab results and how his body is responding so he is not underdosed or overdosed.

As most of you know, there are several side effects to cancer, and these are expected from Conley's medications as well. The most serious and relevent are nausea, vomiting, hair loss, and bone marrow supression leading to increased susceptibility to infection. There are other side effects, but these are most prominent. Luckily, the oncologist is optimistic about his prognosis and minimal exposure to long term/permanent side effects given that this is a relatively short period of time for chemotherapy in comparison to other forms/stages. While chemotherapy itself may not be as harsh, combining chemotherapy with hemodialysis brings many challenges, so Conley will be watched closely through blood work in addition to monitoring for fever and infection.

Progress

I was starting to blog and I realized not much has changed, which is a good thing in the hospital world. Boring is good. Conley started off the morning with a high fever at 103, but it's come down quickly with the help of peppermint oil. There's a number of reasons he could have a fever, but since it's dropped down, the most plausible explanation is that it was a symptom of his withdrawal. We were able to start him on a methadone treatment to help with the withdrawal symptoms. Although he did not receive much pain medication, it was accumulating in his system since he went so long with dialysis. The methadone seems to have helped significantly with the tremors.

The doctors approved the removal of several IVs that Conley had to closely monitor blood pressure, meaning there are less lines attached to his body. The surgeon came by and approved for me to hold Conley (yes I broke down in happy tears) and for him to sit up as tolerared. He also said "he looks too good to be here (IMC)." Conley has been on his back since the surgery almost a week ago. He did a great job and tolerated about 5 minutes on his own. Simply amazing!

Probably the best news is that Conley's best bud Kyle came to visit today! These two have a great connection so it was nice to have a familiar face come by!

No blog needed

Today has been a day full of progress....I will update tonight after we move rooms.

"STRENGTH to endure the pain, WISDOM to think things through and COURAGE to face the fears."

Results from the CT scan did show a clot higher up; however, doctors are not overly concerned because there is good blood flow to the organs. Conley will need to be on anticoagulants (blood thinner) for a several months to help with removing the clot. 

This morning Conley was taken to radiology to place a PICC line, which is an IV line used to give medications, including chemotherapy. This was successful and he is now resting comfortably. 

Since his liver surgery, Conley has started accumulating fluid in his belly, so they placed a small tube in his tummy allowing for the fluid to drain. He has drained a significant amount and appears to be feeling better and breathing more comfortably.

Conley appears more alert and engaged, and while I would usually be annoyed if he keeps me up all night, I was so happy to be hearing him wiggle and talk. What a sound! Unfortunately, he is experiencing some withdrawal symptoms as a result of the continuous sedation and epidural medicine, but we are trying to manage that best we can. He also is having hard time moving his muscles around his mouth, so I've put in a request for a speech therapist to come work with him to see what is going on. At this point, they believe it is more of a medication induced symptom as opposed to neurological.

All the specialists had a meeting about Conley this morning at the weekly oncology roundtable. It's pretty amazing how many doctors and specialists love Conley. Everyone comments on his hair, feisty attitude and how beautiful he is! But at the same time, he continues to present with complicated and conflicting issues. It seems that Conley will need chemotherapy once a week for at least six weeks, if not more. While the timing of the treatment seems minimal and noninvasive, there is concern about Conley's overall nutrition and ability to gain weight appropriately and effectively to continue dialysis. It will be a wait and see type of thing every week as we try to maximize his nutrition knowing the chemotherapy can make him weak and nauseous.

We are so fortunate to have such a great team of specialists working with Conley and problem solving each decision down to the smallest detail, as each can have a serious ripple effect. 

Maybe the best news of all is that we will likely be transferred out of the ICU to another floor that specializes in chronically ill children, such a cancer and blook disorders. This means that they believe Conley has turned a point where he is stable enough to have less intervention. I have also heard that the floor he will be transfered to is much quieter and more peaceful than the others. I sure hope so for both our sakes.

Lastly, the unit psychologist stopped by today to chat with me about the ongoing trauma we have experienced. I always find it awkward to tell a psychologist that I'm a psychologist, and I'm always interested in their reaction. The unit doctor today started talking to me about trauma (not knowing I was in the mental health field), and all the specialists starting smirking, especially the ones who have known Conley since birth. I'm obviously completely open to therapeutic intervention, and love that they have people to come to us in the hospital because lord knows we won't leave our children. Jonathan and I have both utilized therapy during our trials with Conley and feel that it has been substantial to our working relationship. I told the psychologist about the blog and how it's been a therapeutic tool for me during these hard times, like a public journal, and how appreciative I am of all the support and love for not only Conley, but for our whole family. So, keep it coming people.

Just breathe

Finally some good news.

The initial ultrasound showed that blood was flowing great to both his lungs and heart, which is where they believed the concerning clot was. He also received a CT scan to look at an area a bit higher, out of range for imaging on an ultrasound. We are still waiting for those results. During the CT, they also took images for the "staging" process, to see what stage cancer he has and what chemotherapy regimen he will need.

Conley's pain has appeared minimal so the anesthesiologist came in and removed his epidural. We've had the same anesthesiologist for most of Conley's procedures and he is amazing. Today, he came in and sang a song to Conley as a way to connect with him. I immediately knew the song and realized it was from Choice's music class. Come to find out he has 5 kids that all do the same music classes at the same place. It made us all smile and have a lighthearted vibe for awhile. Those are the moments I appreciate here. So, epidural out and pain managed. Makes mama happy.

Doctors are hopeful that Conley can start regular hemodialysis tomorrow as he appears more stable and able to tolerate it well. As most of you saw in the video, he has has several periods of lucidity, saying mama and making movements, but for the most part, he is still sleepy. The sedation still appears to be affecting movements as they are choppy and involuntary. Apparently, that's common after an epidural and even more pronounced on a kiddo who cannot process the medication on his own without dialysis.

What started out being a scary and worrisome day seems to have stabalized for now.

Meal Calendar Extended

My good friend has extended the meal calender for those of you who are asking to help. Here is the link: http://www.takethemameal.com/meals.php?t=LAUG8824

Sometimes things just suck. A lot.

Well, to say things have been hard would be an understatement. Conley's catheter was too clotted to be fixed by noninvasive measures, so he went to surgery yesterday to have it replaced. Luckily, the surgery went well and his catheter is working great. But, other complications have come up. Conley came back from surgery too sick to do regular hemodialysis given that his blood pressures were low and he was very sedated, so the doctor made a decision to do CRT, which is basically continuous dialysis for patients who are critically ill. He will be on this type of dialysis for several days. So far, he's done well and they hope to transition him to regular hemodialysis in a few days. One thing checked off the list.

Since starting hemodialysis, it appears that Conley has formed a large clot in one of his major vessels that circulates blood to other organs, specifically his heart. No one knows why he is clotting so late after surgery, and there really is no game plan yet until he receives an ultrasound, which we are waiting on as I write this. Yes, more waiting. It apparently is rare that he is still clotting despite receiving a blood thinner. I'm trying not to think of what could happen if the clot does not clear, because we've learned that "what ifs" are not helpful. I wish he could just get a break.

In addition, as you know, Conley's surgery on Friday was to remove the cancerous liver tumor. The surgeon said that he was able to successfully remove enough margins; however, the biopsy and pathology report on the mass should that it was a type of hepatoblastoma that required chemotherapy. (Mind you therr are two types, and one does not require chemo). So, add that to the list. At some point before he is discharged, he will start chemotherapy with hopes to transition to once a week outpatient chemotherapy. But obviously all of this has been put on the back burner for now.

Conley seems comfortable overall, and is less sedated. He's been more alert at times when daddy and I are around, so we have been able to interact with him. He is slowly transitioning off of the epidural from surgery, so he's having mild involuntary tremors, but otherwise seems comfortable with no noticeable pain.

There are so many things as a parent of a special needs child that you need to process and comes to turn with. The things I used to think were big, like never urinating, taking nothing by mouth, and still not crawling, seem like small and unimportant things right now. It's been extremely hard to stay positive with the course that's been handed to Conley and our family. Every turn we hit another serious road block. We've accepted each part that has been handed to him, but honestly, what gives. Please don't ever take for granted the wonderful things you have in you life, especially the health of your children and being able to spend time together as a family. I hope we can continue to inspire others to be grateful and appreciative, despite the daily battles we face.

Oh, they just walked in for the ultrasound!

Patience...

We knew at some point we'd hit a road block. And this is it; the first one at least. So far, Conley hasn't required dialysis because his lab work and blood pressures have been steady. But, that can only last so long with a kiddo that has no way to eliminate fluid or waste, or have a way to clean his blood without the help of a machine.

Today, the plan was to do dialysis, but it seems that Conley's catheter (the line that goes directly into his heart that allows for dialysis to happen) is clotted. This means that dialysis cannot happen until the clot clears. This is not a great scenario. Right now, he is stable, but at some point, he will need dialysis and this clot needs to be resolved as soon as possible. The doctors have already done the noninvasive procedures to help clear the clot, like injecting a blood thinner into the catheter, but apparently the clot is too big to be cleared so easily. The next step is to have radiology attempt to clear the clot with alternate noninvasive procedures, with hopes to avoid surgery (again). All this has to be done before he can get dialysis, and it has almost been four days since he last had dialysis. Usually, he gets it every other day, so the fact that he has gone this long is amazing (yet scary). The "grace period" will soon run out.

What is frustrating as a parent is that Conley is not critical "yet," and because it is Sunday, the hospital does not feel that this needs to be addressed today. The staffing is not here and the scheduler is gone. What?! My son has an alloted amount of time to get this clot cleared, and you are telling me I have to sit here and let over 12 hours go by just waiting because it is the weekend. It's frustrating. Meanwhile, my son has not eaten in four days, and you want me to sit here and be patient. 

But, there's not much I can do. I've tried advocating, and listened to the doctor's reasoning, and have purposely decided to put my faith in their decision to wait. (This wasn't my first reaction). Patience is not my best quality, especially when it comes to advocating for my children. But so much is out of our control with chronically ill children, and choosing to be patient is all we can do.

Conley is still slightly sedated and has not fully woken up because his body cannot eliminate pain medication on it's own. Another reason he needs dialysis. All the crap that has gone in his body is sitting there because he does not urinate and his kidneys cannot eliminate the waste. But, overall, he seems comfortable, so I will focus on that. And, we are thankful that he has remained stable and able to maintain without dialysis. These are the things I choose to focus on today.

The picture attached shows what I look like standing at the door to Conley's room. So appropriately given to me by another kidney mom :) that's right. Don't mess with my son.

He's definitely my son!

Just a short update for the morning.

It was expected that Conley would need dialysis early in the morning as he would start collecting fluid, leading to an increased blood pressure, heart rate, and difficulty breathing. But, of course, he's my son and he's kicking butt. They made a plan to put all precautions in place, such a minimizing fluid intake, continuous sedation and intubation, but those are slowly being stripped away. He's breathing on his own and they plan to extubate (remove the breathing tube) this morning. They have also stopped sedation because he's a feisty little one and is trying to play too soon, which can be dangerous at some point if he's too active. He is showing the doctors that he is ready to wake up and be alert. As if we are surprised. I am in continuous awe of his strength and passion for life.

The doctors have decided to hold off on dialysis for now since he is not showing signs of needing it, plus surgery would rather us wait as well to make sure there are no underlying complications that could be exasperated by diaylsis. Make sense? Haha. Yes, I feel like I should receive another doctorate in the medical field, or at least a nursing license at this point. To summarize, this is great news because this means he is doing better than expected! But, he will need another blood transfusion, his 5th this go around.

Conley is still resting comfortably, though going wild when he hears mommy's voice. That just means I'll have to keep quiet and rest today! I was able to sneak home to sleep and cuddle with my other boys last night since Conley was knocked out. Last minute decision and am so glad I did it. I am rested and ready for action. Daddy and Choice went off to gymnastics this morning as usual, and I can't wait until Conley is up and about so we can cruise to the waiting area and be all together.

Thank you to everyone for your sweet comments and texts. They mean more than you know. We are so lucky that Conley has such an amazing support system. 

Have a great weekend. The "short" update turned long :)

Time to Recover

Finally. It's over and we can start to recover and find our "new normal."

In general, the surgery went okay. As expected, the tumor had ruptured and he has a fair amount of blood in his belly. There is no way to know why it ruptured and sometimes "it just happens."

The plan prior to rupture and internal bleeding was to remove the tumored mass with significant enough margins in hopes that we could bypass chemotherapy. They will test the mass to see what type of cancer it is, and some require chemotherapy regardless, but some do not if you remove it with enough margins. But, because the mass ruptured, it basically sneezed cancerous cells everywhere, and to unknown places, so Conley may end up doing chemotherapy just to make sure all the cancerous cells are gone. We should know by mid next week what the final reading is from radiology and oncology. If he requires chemotherapy, he will go back to surgery to get a port placed to use as access.

We are so thankful for his amazing surgeon and team of doctors. Conley bled a fair amount during surgery, which was expected, and he had lots of blood in his belly from the rupture, so he ended up getting yet another transfusion. This made the surgery much more complicated, but never once did I question the quality of care he was receiving.

Surgery also had to cut off part of his tummy where the initial infection started weeks ago beccause it continued to look infected despite several ongoing antibiotics.

Now, for the good news! He's alive and stable. Lungs and heart are stable and doing great. He is still intubated, meaning a tube is down is throat helping and controlling his breathing so he doesn't have to work as hard. Also, since he is not able to do dialysis until tomorrow, all the extra fluid he is receiving can put extra stress on his lungs. He seems very comfortable with pain medication and sedation, but it's quite hilarious that every time mommy talks or touches him, his heart rate and blood pressure escalate! That little warrior is already trying to play with me again!

We are hoping for a restful night since they are trying to minimize stimulation. I hope to be posting smiling pictures again soon!

As we wait...

Today's surgery will take about four hours, which is plenty of time to think about how scary yesterday was for all of us. It was definitely a moment that we have had too many times, facing the line between life and death, especially when Conley was in utero and in the NICU.

Many of you are asking what "signs" we noticed first. Well, Conley woke up his happy, normal self just like any other day. We had planned to head to hemodialysis later that morning in preparation for surgery, and I scheduled both PT and OT that morning so he could have one final session before our long hospital stay. But, we started noticing some odd signs: he was losing color, his lips were white, he was lethargic, couldn't hold up his head and was abnormally fussy. We took his blood pressure and it was very low. Scary low. I called our doctor and gave him a heads up that we were on our way in and something was really wrong. Jonathan just said to me that as we left the house, he wondered if this was it; the last time he'd see Conley. He looked that sick.

As soon as we made it to the dialysis clinic, everyone agreed that he looked bad, and they sent us to the ER, which was luckily across the street. This was our first admit to the ER with Conley, and I was overwhelmed. At least 20 doctors easily were in and out of the room assessing what he needed from their standpoint. Everyone's faces said Conley was in big trouble, but no one knew why, or wanted to say it out loud. A special team came in to start two IVs for emergency fluid, and he was given an emergency blood transfusion. They ran labs as well. A typical blood count (hemoglobin) is 12. Conley was at a 4.7, and he was severely anemic, which is how they knew he was bleeding somewhere. He was sent for an emergency CT scan to check his tummy as that was the most likely place for blood loss. The CT showed he had bled into his stomach, and initially the call was emergency surgery. But, luckily, Conley responded well to the first blood transfusion and his blood pressure was rising. He even sat up, smiled and clapped (that little booger!) so the surgeon felt that the bleeding had stopped for now and there was no need to rush into surgery. Conley needed a total of 3 blood transfusions throughout the night in order to raise his hemoglobin to a stable level.

As I sit here waiting for him to return from surgery, I've had several visits from medical professionals that know and treat Conley. One said, "he is lucky you are so in tune with him, and know when things are wrong. It was good that you called ahead to warn us, because we knew to be ready." And the other said, "If you hadn't brought him in when you did, he wouldn't have made it." Wow. Im not sure of that makes me relieved or more traumatized. In the moment, and even now, I knew he was sick. But that sick?? I'm not ready for him to be that sick. We've had almost a year together, and all of this happened in two hours. How is that fair for any of us?

A couple more hours of surgery to go. This boy is a fighter and loved by so many. I can't wait to see him kick cancer's ass too.

Quite a scare

I usually only post pictures of my boys when they are happy, because let's be honest, no one wants to see this type of picture. It's heartbreaking to see any child like this, but when it's your child, it's unbearable. But this is our reality, and it wouldn't be fair to only show a highlight reel.

Conley gave us quite a scare today as he was admitted to the ER due to bleeding in his belly. They believe his liver mass ruptured and he was bleeding out into his belly. He got sick really fast, and required fluid and blood to stabalize. Luckily, we noticed signs early and it seems as though the bleeding stopped on its own for now. If it continues, he will need emergency surgery to stop the bleeding.

He is still scheduled for surgery tomorrow to remove the cancerous mass on hisnliver, as long as he stays stable. I will update as soon as I know more.

Thanks for your continued prayers.

Meal Calendar

Many of you have been asking how you can help us during this difficult time, and to be honest, unfortunately there is not much anyone can do but continue to keep Conley in your thoughts. We appreciate all the offers. If you are set on doing something, our wonderful friend has set up a meal calendar to help us out during the ongoing time we will be in the hospital. Here is the link if you are interested in participating. 

Strong Willed and Wise Leader

When Jonathan and I first found out about Conley's medical issues, we were determined to give him a name of meaning; a name that he would represent well despite the difficult journey that was ahead of him. I think we may have just found the perfect reflection of his true being by naming him Conley Duke. His name translates to "Strong Willed and Wise Leader." He has shown everyone, including his parents and specialists, just how strong willed he is, and what a wise leader he has been for the medical community. The complexity of his case has created connections between specialists that will help children that follow in his path, with more hope than ever before. We have heard many times that something Conley has presented will be a "first" and in rare form, this strong willed little boy is powering through with a smile and such personality. As hard as all of this is to see your child endure medical issues, WE are so lucky to be his parents and to watch as he creates changes in the world starting from the womb!