Go, Go, Go

I know it has been awhile since I last updated the blog, but let me tell you, this boy is keeping me busy! And to think I thought I was busy before going to the dialysis clinic three days a week for "only" 4 hours. Just to give you a sense of what our weeks are like, I have posted a picture of our calendar and the rolling pharmacy/gear bag we take with us every time. And that is only scheduled visits. Add at least 3 unscheduled visits a week to that just for Conley. And then there is Choice. That's a whole other blog I will do later. We literally live at the Specialty for Children office building. But, I will gladly be this busy if Conley can remain at home and my boys can be together every day! And, I am extremely lucky to have a nurse that is not only great for Conley, but has become a good friend of mine as well. He has seriously become part of our family. If only he would agree to live with us! :)

Conley is slowly making progress and has started returning to himself these past few weeks. His personality and amazing spirit is back, along with his smiles and eye contact. He is slowly gaining strength back, but is still having a hard time with several gross motor skills such as sitting independently and holding his head up. It's unreal to think that a child who was doing all of these milestones early despite his kidney failure has lost a significant sense of motor stability. Slowly, he is making progress and gaining the strength back. He is such a hard worker and only continues to push through these obstacles!

We have successfully completed Cycle 1 of 4 of chemotherapy. Conley has done amazing, and surprisingly has not had too harsh of side effects yet; however, we are told that they will continue to accumulate over time. He also did not need to receive any blood or platlettes during this cycle, which means his body is recovering well on it's own. I love hearing this good news! Another good thing for Conley is that he does dialysis and receives clearance of his blood, and therefore, of the chemo medication as well. The chemo medication stays in his system long enough to do the trick by killing cancerous cells, and then is removed by dialysis, which will help the over-accumulation of the medication. Most people who are on chemotherapy do not also do dialysis (yes, our son is special), and so the medication stays and accumulates in their body for weeks and months after. Another win for us, I guess.

We have been very blessed to have family members come into town to help us with moving into our new home, including Jonathan's parents and my mother. They all played an essential role in making the move easier and less stressful for us, plus the boys loved visiting with them. We plan to have more family visiting us throughout the next few months and we cannot wait. This past weekend was our third weekend home from the hospital but the first one where we did not have to go back to the hospital or clinic! A huge success in our book. Funny story that I was telling Jonathan how "easy" this past weekend seemed, and how much down time we had - despite Choice waking up with a fever on Sunday and Conley pooping all over his "external parts." Ha!! And remember, Choice with a fever and Conley at the highest risk for infection due to chemo - not a great combo. Yet, the weekend was wonderful and blessed. Jon handled the poop and I handled the fever with my essential oils (got rid of Choices fever in less than 24 hours!) Our new normal, I suppose :)

Conley will start Cycle 2 at the end of this week and he will receive 3 medications. Usually, this is the harshest part of the cycle since he receives Cisplatin (chemo medication) on Thursday, which is very difficult for most people. It is one of the stronger medications. We shall see what the weekend brings, and hopefully with a more stable and controlled withdrawal/wean off of narcotics, we will have an easier time. Conley is still on Methadone to control the withdrawal, and our current palliative medicine doctor is planning to do a long sustained wean in hopes to avoid what we experienced after initially being discharged from the hospital. Fingers crossed! Prayers are welcome for Conley's ongoing comfort.

Puzzle

We are so happy to have Conley home and the family all together again. On Friday, when we left the hospital, Conley was back to his old self chatting it up and flirting with the nurses. But, as you know, we started chemotherapy last week and we were not sure what to expect moving forward. The side effects were described to us, and most of them were pretty similar to what we have already experienced with renal failure, such as vomiting and fatigue.

On Saturday, we noticed that Conley was becoming more and more fatigued and tired, and sleeping most of the day. He also started having a very difficult time holding up his head, sucking on his pacifier due to weakness in his mouth and not moving his limbs much. But, he was still showing smiles and making eye contact. I called the oncologist to confirm that these symptoms were likely a presentation of the chemotherapy side effects. And hr agreed. But, by Sunday, something was definitely wrong. He wasn't showing affect, making eye contact, smiling or tracking others. He seemed to stare off into space as if he was blind. We knew one of the side effects to chemotherapy was blurred or double vision, so we thought this might be the case as he was obviously scared when someone put him down, but was comforted by our voices. We also noticed some tremors, excessive yawning and other symptoms of withdrawal. I called our palliative medicine doctor (yes, we have many to call and sometimes figuring out which one to call is difficult!). They agreed his presentation looked like withdrawal and was somewhat frustrated that his methadone treatment was weaned so quickly after being discharged from the hospital. All that said, we had to meet him in the ER so he could evaluate Conley and prescribe us a prescription of Methadone to help with the symptoms. The only problem with Methadone is that is takes up to three days to reach a therapeutic level, so Conley has continued to present with the symptoms mentioned as we just wait for the effects to take place. It is so excruciating as parents to see your normally happy, smiling, flirting and very engaging baby look like he has no emotion, can't see and freaking out evert time any one puts him down.

Yesterday was Day 3 of the Methodone and we have not noticed much change to Conley's condition. He has started showing some signs of improvement including sucking his pacifier and sleeping better, but he still presents as if he cannot see, move his limbs and only exhibits minimal affect. There have been many theories about why Conley is presenting this way, including an over prescription of an antinausea medication for chemotherapy (that did not take into account his renal failure and inability to waste medication on his own) or maybe too much chemo medication, but all in all, these theories are being disapproved one by one because by this point he should be back to his normal presentation. So the puzzle continues, which is concerning to us of course. We are hoping to gather other opinions as to why he presents this way and hope that is it not something permanent.

On a side note, today I am back at Dell with Choice so he can have a range of screening procedures in order to rule-out or confirm any medical issues for him. This was a planned day due to several potential genetic issues that came up during Conley's most recent hospitalization. Please keep the boys in your thoughts and prayers.

Home

We were discharged and able to come home on Friday evening! It has been a rough weekend home sorting out the effects of chemotherapy in combination with other factors, including withdrawal. We ended up back in the ER on Sunday for a continued prescription of Methadone to help with Conley's symptoms. Once things are more settled, I will do a longer update. For now, I am grateful to be at home with boys.

Busy Bee

Conley has already won the hearts of all the staff and even other residents on the oncology floor. We had about 24 hours from when we moved upstairs to when we started chemotherapy and he spent the majority of his time out of the room walking around in his car, playing outside, in the playroom or socializing with everyone.

Jonathan and I spent the morning learning more about his chemotherapy schedule in depth, including when he will receive each medication and what to look for once we are discharged. I found myself saying that we are "lucky" frequently, which is somewhat ironic now that I think about it. One of the biggest side effects of chemotherapy is kidney failure, and a large part of inpatient chemotherapy is focused on hydration for the patient before and after chemo. Well, you guessed it. Since we have nonfunctional kidneys and do not need hydration (actually that would be bad for him since he has no way to expel it besides dialysis), that generally works in our favor. That being said, the doctors are convinced that it is highly possible for Conley to all of his chemotherapy treatments on a outpatient basis! They have never done that, but they do not see why we couldn't, especially since we are well versed medical parents by now :) There will likely be many other reasons for hospitalization such as fever, infection and transfusions, so it would be nice to avoid any scheduled ones if possible.

Conley started his chemotherapy yesterday. We haven't seen too many side effects yet, but they say it takes about 48 hours to settle in the body. As I mentioned, he will receive three different medications. They also preventatively give him several antinausea medications. His chemotherapy schedule will be laid out like this: At the beginning of the cycle on Thursdays, he will receive a three hour infusion of Cisplatin (which was dropped down from 6 hours given his lack of renal function - score; another "lucky") and Fridays will require hemodialysis in the morning to remove excess fluid, followed by two different chemotherapy medications (Vincristine and Fluorouracil) given as a slow push medication  (i.e. syringe) over minutes. For the next two weeks, he will receive one medication (Vincristine) as a slow push on Friday hopefully as an outpatient. This cycle is done every 3 weeks for 4 cycles. So, 12 weeks total. Got it?! :) In the bigger picture of cancer and chemotherapy, this is a very small time frame (12 weeks), amount of medication and time spent transfusing the medications. But, obviously combined with all his other medical issues, settling on a schedule for all his treatments will be very important since they are all time or day specific. For example, he cannot do chemotherapy before dialysis, or all the medication will be sucked out by the machine. All in all, things seems to be falling into place and we are so thankful for our team of specialists.

Moving on up...

This little ahonui is causing problems in the ICU by flirting with the nurses and clapping his hands as people walk by the room. People stop in their tracks and fall in love with him immediately; not good when you have many critical patients! There's even a saying going around the unit where staff report, "the new patient is cute, but is she/he Conley cute?"

Conley has spent the last few days up and out of his crib being held by close friends and family which has allowed him to peek through the windows into the hallway. He is still not able to leave the room because there are so many other illnesses, including RSV, floating around the halls of the ICU, so it is in his best interest to stay in the room. He is getting antsy to be up and active, as we all are. He has been working with physical and occupational therapists as well as daddy and nurse Kyle to regain some strength on his hands and knees and torso area. So far, it is astounding to see him act like nothing ever happened.

We just found out that he will be moving back to the hematology/oncology floor this afternoon in preparation for chemotherapy to start on Thursday. Once moved, he should be able to get out of the room and walking around in his car or stroller once again. We are so thankful and grateful for the opportunity to be transferred off the ICU! Now, this time, let's stay out!

More and more I am realizing that Conley is such a miracle and he has taught us all more than we ever could imagine. His continued strength, resilience and stubborn perseverance has saved his own life more than a handful of times. We are so proud to be his parents as he has done more for others in his short life than most will ever do. Every day is a blessing with him.

♡♡ Short and Sweet ♡♡

Today's blog brings minimal medical updates, but huge emotional relief. Conley continues to do well recovering from his surgeries, on full feeds and regular hemodialysis. He also appears to have passed the test of using the continuous heparin drip as doctors have decided to switch him back to the anticoagulant shot that he had prior to his previous bleeding situation. While everyone is still concerned that he may bleed again, the consensus is that he is far enough past surgery for any impact to occur. But, this is still something that he will be monitored for closely over the weekend.

Jonathan and I spoke with the oncologist at length yesterday to discuss the plan for chemotherapy and how it all works in relation to his hemodialysis. We have learned that we cannot say hemo and chemo in the same sentence because they frequently get misinterpreted :) It seems like the plan at this point will be to start his first cycle of chemotherapy on Thursday of next week, to be followed by hemodialysis Fridayand Sunday. We are becoming educated on the three different medications that will be used for chemotherapy, how they work and what their side effects are. Another large medical binder to add to our collection!

Conley seems to be in good spirits as he has had three amazing days so far, and even slept through the night for the last few nights! Of course, cuddling with his bear that is drowned in essential oils! These have made such a huge impact for both of us during this hospital stay. I'm sure the medication he is on for withdrawal likely helps, but he genuinely appears to be excited and happpy when he has visitors, instead of being anxious and paranoid about anybody that walks through the door, like he was just one week ago. His withdrawal seems much more controlled than last time, and he is slowly being weaned off Methadone and Ativan. Every doctor that comes to visit him is just in awe of his strength and resilience throughout this process and how he has definitely surpassed any expectation in his recovery. Not only does it seem like he is physically doing well, but emotionally and cognitively he appears to be the Conley we all know and love. I hope we can keep it that way!

On a side note, thank you for those that reached out to me personally regarding my last post on religion and prayer. I have had some great conversations with many people, and while I wish it were different circumstances, I love how this could be a way to connect to others and share our journey. So many of you have taught me new ways to think about life and this journey, and I'm very appreciative! I have also earned the Dr. Mom title at the ICU since I know way too much about too many things!

Please continue with the thoughts and prayers for comfort and healing.

"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/