I failed to share with you the great news about little Caden, who’s battling Neuroblastoma. I relayed the fact that he received experimental MIBG radiation in San Fransisco and was waiting for scans the week after Thanksgiving to see how well he responded to the treatment. The joyous news is that it worked really well and resulted in a significant reduction of the neuroblastoma cells. Apparently they give a score that indicates prevalence of the disease. I don’t know what the scale is but he started at 26 and after about 5 months of chemo he was down to a score of 20, which concerned the doctors that the cancer was not yet enough under control for Caden to undergo a stem cell transplant, which is a key component of his treatment. Thus he underwent the MIBG radiation. The most recent scans at the end of November showed that while the cancer is still there, it is down to a score of 4. For Caden to move forward with transplant he needed a score of 5 or less, so they were ecstatic to be able to move forward with his transplant.
The transplant was scheduled for the 19th of December, but as of last night it is on hold. In a moment, everything has changed. Caden is fighting a cold which to most of us would be nothing, but to a body with an already compromised immune system and heading into a week of of “conditioning” in which Caden would be getting radiation and chemo that would annihilate what’s left of his immune system, this wee cold, could literally be the death of him. Apparently, this particular cold virus is also hard to get rid of. Every day that transplant is delayed is a day without an assault on the neuroblastoma, an unguarded day. Friends, my heart is just so heavy for my friends Pam and Jason. It feels feeble to ask for prayer on their behalf because of how insufficient it feels – there is nothing visibly accomplished. But I cannot call into question the how of prayer works every time – I am told to pray, in all things, with thanksgiving. Thank you Father for how far you have brought Caden and his family. Thank you for all the ways you have protected him thus far and we ask that you would swiftly bring about the end of this cold. You know this virus, you see it, in all it’s detail, you know it utterly and you are able to destroy. That is what I ask for – I ask for more mercy, more grace, more demonstrations of your power to overcome death and for comfort by your Spirit for Pam and Jason.
I am going to copy in Jason’s update from late last night, actually from the wee hours of this morning:
Thursday December 13, 2012 Day 262
I really don’t even know where to start this evening………………….
Our morning started out as usual with Caden being a crazy kid chasing his sister up and down the camper. He made sure to jump on my bed a few extra times just to make sure I was awake. Breakfast for Caden was a little weak and he ultimately ended up only eating about half of his waffle…….
At 9:30 we packed up and headed over to the SCCA for our days worth of appointments. We started off with a quick meeting with the nutritionist and then at 11am we met with the financial services department. It was really good to hear her say how good she thought our insurance was. She said it was the best she had seen for our carrier which I thought was interesting…..We went back upstairs to the transplant unit and had our third meeting of the morning with the child life specialist. Once we completed that meeting we were on our way to lunch.
For lunch we decided to take a quick walk up the street to the REI store. They actually have a World Wraps on the second floor and that is what sounded good for lunch……. In our continual efforts to keep Caden healthy, even though we know he has a cold, we decided to get the food to go and headed back to our car in the parking garage of SCCA to eat…….. Once we were done eating we still had some time left so we decided to stay in the car and just let the kids goof off in the back. At one point Caden decided to come sit up front and pretend that he was driving. While he was sitting in my lap I noticed that he felt a little warmer than normal so I asked Pam to hand me up the thermometer and that is when the day started to spin out of control…………..
When I checked it was in the high 38’s which meant he had a fever and that we needed to get moving. It was about time for our appointment so we went back upstairs and eventually got put into our room for our scheduled meeting with our transplant doctor. When she came in I asked her if we could check Cadens temp and sure enough it was climbing…… We monitored him for a bit while we went over some of the paperwork for transplant and then once everything was ready they escorted us down to the infusion center where Caden got a bunch of IV fluids and started on his first set of antibiotics……….Before long they were talking about an ambulance and him getting a ride back to Children’s……I tried to reason with them that it seemed a little overkill to do an ambulance for this but they insisted so we complied………………I was over it at that point and figured it was really not worth fighting for, at least it was not and ALS Lifeflight from Montana……..Then the ambo crew showed up……….An ALS rig with a Critical Care Nurse on board……….Seriously? Whatever? Once again I figured it was not worth arguing about………….About 10 minutes later the Critical Care Nurse asked the floor nurse the same questions that I was asking because he was clearly confused why Caden needed an ambo as well. Apparently all you need to say to make problems go away is “The doctor ordered it” because that is what he was told and off we went……..
The worst part of the day was the news we received while sitting in the infusion room getting his antibiotics. Cadens cold is a virus called Parainfluenza. If you recall last night i mentioned that there were only a few colds that they would not proceed ahead with transplant if he had them. Well, go figure, this is one of them. Thankfully they found it because if he were to go to transplant with it it can often times be fatal…………..
Now for the worst part of the day. The Paraflu is one that is particularly hard to get rid of and usually takes some time……something that we do not have much of these days……..There is one treatment that they usually do that takes 5 days or so called Ribavirin. The Ribavirin treatment is significant and involves a plastic tent over his bed, the rest of the room covered with sheets, nurses in powered respirators, me wearing a mask, etc, etc, etc…….Pam and Camryn will be excluded from the room for the 5 days as well. The treatment basically impacts the DNA of the virus thus making it go away……….That is one option.
Option two is a new, non FDA approved treatment that Caden is a candidate for. We have not heard much about this one but will first thing in the morning……..hopefully it is a little less involved than the first one………..At this point we are willing to consider anything that will work because if the virus does not go away we do not go to transplant….If we do not go to transplant then…..you get the point……
This evening once we got to our room at Childrens we eventually were taken down to get a CT scan of his chest. The scan showed basically the same things that his X-ray yesterday did. Some inflammation around his bronchial tubes consistent with the Paraflu but not severe enough that we would start the treatments tonight….so, once again, hurry up and wait a little bit longer……….
So without a doubt at this point Cadens transplant is delayed………we don’t know how long even yet…………..What I do know is that we cant do transplant while this shit is in his system……….We cant wait too long as the cancer if left unchecked will eventually come back…..we have not had any treatment for almost 9 weeks now……….I don’t know if another MIBG treatment is in order or not but I surely intend to ask in the morning…………
A simple cough, sneeze, brush against a piece of clothing, or a virus floating in the air is what caused this. We will never know where the one that infected Caden came from but I can surely tell you that it will always be on my mind………… Many we have talked to over the past couple of weeks have tended to downplay a cold and clearly have no clue how serious even a minor cold can be…… I have been made the bad guy more than once over the past several weeks for not wanting to be around kids that were sick a week or two prior or to be around large crowds where anything can be lurking……a simple sniff to most can be ignored and is usually no big deal. A single cough for most can be ignored as well. Hell, for most people this virus is nothing more than the common cold……… In our world those things can mean the difference between life and death. Unfortunately at this point we are dancing between those lines and finding out exactly what that means………… Every wince, every whine, every non normal noise Caden makes, makes me think up a hundred different reasons why he is making that particular sound. Most are not good.
It is strange sitting here once again next to Cadens bed writing the nightly update. I knew that I would be back here eventually but really thought it would be next week and we would be beginning transplant. At this point I just hope we get there……..
I honestly don’t know what else to say at this point. It is midnight, Caden is resting in bed right now but keeps waking up because he is having bad dreams. I don’t know if it is just one of those nights or if it is because we are back in this place, the sights, the sounds, the smells all too familiar and making it hard to sleep???…….Again, a million reasons why go fleeting through my head………….Pam summed it up earlier today when she said that no matter what we do we cant seem to get any steam heading forward……….every time we think we are making some progress we get shut down…………….In a lot of ways I feel like we are back at March 30th……what it does do is remind me to always seize the day. No matter what, make the most of every second of every day. Whether you decide to use those 24 hours on, family or something else it doesn’t really matter, just make sure you make the most of every single minute…….