David's words- We haven't been on here in quite some time, but don't worry, we do have a couple unfinished blog posts sitting in drafts from months worth of information. Needless to say, those will probably never get posted and we will just fast forward to what is going on right now.
As of late, Andrew's kidneys are pretty ruined from all of his radiation treatments. We were hoping his biopsy would reveal that there was something else going on and it would be something that was able to be treated. Unfortunately, Andrew's doctor informed us this week that it was definitely from radiation damage and that we need to decide what type of dialysis we would like to have Andrew begin.
Andrew's nephrologist informed us of the three different options that are available: peritoneal (which is a bag that is placed in your stomach and does the work to filter the kidneys, but it would mean Andrew has to manage a tube sticking out of his stomach [honestly, and this is David by the way, I don't fully understand exactly how this bag operates in the stomach, but it does the filtering somehow]) and the other two options are both hemodialysis, which works through the veins/arteries (one being through a catheter that is placed around the collarbone area and the other is through a fistula, which connects a vein and an artery together on his none dominant arm for treatment).
As some of you have asked us different questions about our options, we can share what we know (which is far from being very knowledgeable). The benefits to the peritoneal bag, it provides Andrew the ability to have his treatment at home while he is sleeping at night, so in that aspect, it is a huge benefit. In addition, it does provide a better opportunity for Andrew to be a little more lenient on this new crazy diet that has been very discouraging for him. However, the downsides will impact Andrew's life in such a way that he is not ready to go that direction. Andrew would have this bag surgically implanted in his stomach and he would have a tube hanging out of his body and connected to something at all times. In addition, Andrew wouldn't be able to go into the water anymore (which is a rather normal occurrence in Texas Summers). Andrew just isn't ready for that at this time.
For the two hemodialysis options, Andrew can receive treatment either in a facility or at home. When we originally heard about Andrew needing dialysis, we just assumed he could to one of the dialysis centers that we see all over the place; there is even a Davita Dialysis location just outside of our neighborhood. However, we just found out on Wednesday that you have to be 16 or older to receive treatment at one of those facilities. There are only two pediatric dialysis locations in Houston, one at TCH and one at Memorial Hermann (both in the Houston Med Center). Andrew would have to go there three times a week for four hours at a time. The downside to this option is the distance and time away to get this done. In addition, this option provides the least amount of benefit for his kidneys, since it is only three times a week.
The other hemodialysis option can be conducted at home for four hours at a time, six days a week. With this option, Andrew would need to have a surgical procedure to create a fistula in his wrist or forearm area (and then it takes six to eight weeks for that vein/artery to grow and expand in preparation to be accessed routinely for dialysis). At this point, Andrew would start off having treatment up at TCH still for the first few months and during this time, Kristi and I would receive training on how to access his vein ourselves, so that we could conduct his treatments at home ourselves. The benefit to this option is that Andrew wouldn't have something external connected to his body and he could still swim and live a relatively regular life (or at least as normal as possible with this new development).
*****Well, I started writing this post late Thursday night and decided to go to bed and planned to finish it the next day. Then, late Friday afternoon Andrew's Nephrologist called to tell us that Andrew's lab results from Wednesday were back and that we don't have 6 to 8 weeks to have the fistula procedure done in preparation for home dialysis. Instead, Andrew will need to go in to TCH this Wednesday and have a catheter (near his collarbone) surgically placed and then he will have dialysis on three days in a row to try and get his BUN (which was at 92, the doctor stated that 100 is his threshold as to when Andrew needs to be on dialysis; just for reference, before we went to Disney, Andrew's BUN was at 64) and his creatinine (which was at 7.0) stabilized. Then, every week after that he will go to TCH to have treatment three times a week (likely on Tuesday, Thursday, and Saturday). Fortunately, the dialysis treatment protocol is very straightforward and there shouldn't be a lot of waiting around for treatment. The options are to either arrive at 7:00am and treatment is from 7:30-11:30 or to arrive at 2:00pm and treatment is from 2:30-6:30.
This is Kristi... we have been praying for wisdom as to which dialysis option we should choose and we are taking the most recent turn of events as God's way of making His will clear. It isn't what we had planned on doing, but we trust that He didn't fall off His throne when Andrew's most recent labs showed that we don't have time and must act fast to keep Andrew healthy.
Many of you have asked about transplant... under normal circumstances, that would absolutely be the next step, but the conversation about transplant in the presence of cancer, is very messy, scary, and not clear cut... well, it is clear cut, but must be approached with a very healthy discussion about the risk-benefit ratio. We have been beyond humbled and blessed by people reaching out and saying they wanted to donate a kidney to Andrew... can we just pause there... I don't know that there is anything more humbling, transparent, and sacrificial (outside of Jesus dying for our sins) than someone willing to sacrifice their own comfort/well-being for the sake of our boy's life. I wish it was that easy, that a transplant would solve Andrew's problem of failing kidney's, but the fact that he has underlying cancer makes it a super risky and controversial proposition. The criteria for eligibility for transplant is 2 years cancer free... for him to be "cancer free" would be a miracle in and of itself. At this moment, he has two tiny spots (smaller than the tip of an eraser on a pencil) still lighting up (that's a 90-95% reduction in tumor burden..... that is amazing.... to God be the glory), so he still "has cancer"... although Andrew's Dr in Denver looked at his images and said that he can't really see anything and that he would say there was no evidence of disease (that classification means that nothing is visible on imaging, but leaves the interpretation open because we all know full well that there can always be tiny metastases hiding somewhere that isn't big enough to visualize at this point). The risk of giving someone who has active cancer a kidney is that the immunosuppressive drugs needed to prevent the body from rejecting the new kidney, can create a breeding ground for cancer (you are turning the immune system off). If the cancer starts to grow, you have to stop the immunosuppressive drugs and that puts you at risk for rejection of the new kidney. Worst case scenario, you are left with progressing cancer and a rejected kidney.... that's a bad deal! Our team of Dr's plan to meet to discuss the risk/benefit ratio of the transplant conversation, so will you please, please, please pray for wisdom for Andrew's team of Dr's and for our family?!?!
I'm not going to lie... a lot of tears have been shed this week because of the uncertain future for Andrew and our family... I literally can't even fathom how this next leg of the journey even works out, it's like I'm standing in front of an insurmountable mountain... I'm intimidated, scared (mortified really), and weak in the knees looking at this mountain, but that's what a sherpa is for right? I know we have a good and perfect Sherpa leading the way, I just feel exposed and vulnerable as we prepare for this climb. As I was crying out to the Lord yesterday, He reminded me so clearly "remember, we have been here before..." He reminded me that we stood in front of a similar insurmountable mountain with Grace. Those of you that have been on this journey with us over the past almost 10 years, probably remember when Grace had a surgical complication after her third open heart surgery and found herself in the CVICU at Texas Children's on deaths door step and almost every medical professional around her giving up on the hope of her surviving. We questioned if we had heard God correctly (about taking a riskier road with the hope of a better long term prognosis by going to Boston Childrens) and feared that we may have literally killed our daughter. While the situation looked grim, God reminded us that He was still on His throne and He made a way where there was literally no way. We walked through a curling 3.5 months where Grace was life lighted back to Boston, our family was separated for too many months, Grace endured 2 more open heart surgeries, and required a crash cart more than once, but look at where she is today... God didn't remove the Red Sea, He parted it... He didn't remove our problem, but He made a way through it, carrying us all along the way. God's reminder spoke to this weary heart and served as a powerful reminder that He did it once and He can do it again.
Prayer warriors- we need you in the biggest way... I thought cancer was our Goliath, but now it's like we have two Goliaths determined to crush us. One thing I know about Goliath is that God used David, a small, shifty, nimble, expert slinger, brave as all get out, selfless boy to defeat a giant because what others saw as a disadvantage, God used as an advantage that ultimately took down a giant. We serve a miracle working God, so we are begging you to please join us in hitting the floor in prayer for wisdom and deliverance from cancer and end stage renal disease on this side of heaven.
Please pray for Andrew's (and the rest of our family) peace, resolve, and hope (in the One that doesn't disappoint) through this new battle and that God would do what only He can do (heal and restore Andrew fully and completely on this side of heaven). Please pray that we continue to do ALL things in His strength and for His glory!
Thank you for standing with us, for loving us well, and for serving us in ways that only God knows we need! You are the hands and feet of Jesus in our lives and we literally thank God for you all day, every day! But God!!! We love and appreciate you!!!
