Instead of rewriting all that's happened in the past week or so with my health and new info that we've received, I've decided to save my energy and repost what Steven Phillips (my husband) wrote as it explains everything as well as it possibly could be. Suffice it to say, it's not been an easy week - or a fun one, and I'm trying to come to terms with what all of this means for my life and my future.
The Update I Didn't Want To Write
by Steven Phillips on Saturday, June 18, 2011 at 2:24pm
Rachel and I have returned from several days in Boston for extensive tests regarding Rachel's medical condition. It has taken a few days for us to be able to process the results we found enough to be able to deal with the information. One of the tests she had was very long exploratory bronchoscopy (the longest out of 28 this year - she was in OR for three hours). When the doctor and his assistant came out to see us, you could tell they were both really visibly shaken. The first thing the doctor said was, "Well, are you ready to head over to Europe to see about the transplant possibilities?" (Dr Ernst is a personal friend of Paolol Macchiarini - the only doctor in the world who has successfully grown a trachea and bronchial branch from a person's stem cells and transplanted it back into the patient.) When we asked, "Why?" he said that, nine months out from the surgery Rachel had in September to place mesh on her airways to help hold them open, there was no evidence whatsoever that she had ever had surgery in terms of how badly her airways are now collapsing. In other words, the surgery was a total failure - Rachel's airways are collapsing as badly now (or worst) than they were before the surgery. This means that all of the surgeries, stent placements, medications, etc. of the past two years have come to nothing. A hard "pill" to swallow!
Dr Ernst and his assistant spoke at length with us regarding the lack of other options. The tracheotomy procedure that had been proposed earlier will not work for her because of the extent of the collapse she is having and how far down it collapses in her airways.
This is an extremely dangerous position for her to be in because it appears to be, in fact, progressively getting worse given the fact that immediately following the surgery she seemed to have some less collapse. The problem is, if she should get much worse they would have to put her on life support to keep her breathing and then we'd have to figure out if there was some way to get Dr. Macchiarini involved - which would be extremely difficult to do at that time given that his procedure has not yet been given FDA approval in the US. Also it takes several months to grow the new tissue after all of the preparations are in place - meaning the soonest we could hope to have this done is at least six months away. We would probably need to have the airways grown in Italy and the surgery done in Spain (Macchiarino has offices in both places), meaning we would have to be over there for several months and, of course, our insurance would not pay for the procedure or any of the other expenses. We would have to try to get medical emergency grants, "mercy flights" for the tickets, some kind of living arrangements over there while maintaining our place here, somehow, etc., - to say nothing of the fact that we will have to convince Dr. Macchiarini to actually take the case
DR. Ernst is now calling Macchiarini to see what they can work out. This means Paolo is now hearing about Rachel's case from both Dr Weiss (our pulmonologist here in Burlington) and Dr. Ernst in Boston. Both of these doctors are on the cutting edge of this technology and personal friends of his, so, we could not have better advocacy.
You are probably wondering how we are doing with all of this. Oddly enough, we both had a strange "peace" come over us when we were told the news in Boston. Rachel said that, for one thing, it means she is not crazy or some kind of hypochondriac. She has been telling them that she could still feel the airways collapsing all the time and that it was getting worse as time went on. Obviously, there are the doubts about the "unknown" and the fears that try to grab you when your body is in a serous medical situation.She is still in pain daily from the unrelenting headache that began almost three years ago. She has had a great deal of stress put on her body from the move which was not needed at such a critical time.So her shortness of breath and coughing have become obviously worse.
I guess, for me it means some clarity of where we stand. We either need a complete "restorative miracle" or we will need a miracle to get all of the pieces to fall into place for the surgery. Please don't "preach at us" right now about the first option. We know that restorative miracles happen and I have had them happen myself, as well as seen them take place during our ministry. But, at best, they are notably few and far between. Sometimes it is hard when people rush to try to get you to depend upon that option alone when you know that they have never seen one, let alone had to believe for one for themselves.
I also don't see Peter asking advice from the guys in the boat when he began to sink when he was walking on the water with Jesus. The fact is, faith is a "gift" and there is only One who can help us to trust Him more. Believe me, we are trusting God, the best way we know how, right now. We'd both be dead by now if we weren't. But we are also amazed at how God has set things up for us, so far. The three pulmonolgists involved in the case are from different sides of the globe, they know each other well, and they have all worked in this technology (DR. Wiess is working on growing a complete set of lungs, the cardiologist Rachel was referred to for another issue turns out to be working with Dr. Wiess to figure out how to hook the new lungs up to a heart when Wiess finally gets it done, Dr Ernst has been a part of regrowing airways and transplanting them into sheep in Boston, Dr Macchiarini has actually done the procedure three time now on humans and... HE IS SCHEDULED TO SEE RACHEL HERE IN BURLINGTON IN A LITTLE OVER A MONTH!!! What "Masters Hand" could have brought all of that together?????)
The biggest problem that I face is the fact that my young wife - the love of my life - is suffering and no one knows how to fix it. Having to think about life threatening issues with someone you love is extremely wearing... to say NOTHING about how wearing that is on her! Our lives have diminished... but hopefully so that HE might increase.
Last Tuesday, setting in the waiting room down in Boston, the chaplain's assistant came over to speak with me because she had seen me waiting there for so long. As I told her the story, and the fact that this was the 28th time I had sat waiting in a similar situation the past year, I noticed the whole waiting room began listening in. I said that we had found that we had been required to rethink what church/faith/success really meant. I said that, at one point through the past two and a half years, I had become very depressed because I saw my life's work completely dissolved. But then some strange things had been happening. For example, the "blog" that Rachel had put up to sell some of our stuff before the move had received over 19,000 hits in two weeks!!!... and, it was only published in our local area!!! Some people came to our house in tears. ( Rachel had published our story on the blog.) A lot of them didn't buy anything... some of them had driven two hours just to buy a $20 item! They stayed and talked... exchanged email addresses and phone numbers. Some of them talked all evening long with us... most left saying they would be praying for us and many have been in contact with us since! People all over the world are praying for us because of these updates. Now, almost the entire apartment building we are living in has told us they are praying for Rachel after our only being here for a couple of weeks! I told her that, at our lowest point in our ministry work, we find ourselves "ministering" to more people than we ever had before. I said that we had redefined "success" as just being here, now, and just being here with God... MAKING JUST THAT, OK.
I said, "All my life I have been looking for a new definition of "church" and now I fine myself living in one that has NOTHING to do with a place or a format... just being in the midst of a collective group of people who are sharing their lives together... The struggles, and the joys, and the tears, and all of it. When I finally stopped talking with her, I noticed several people in the waiting room had been crying. One guy said, "Sir, I would be happy to take care of her service dog (Siena) while you go back into the Recovery Room with Rachel." The chaplain's assistant gripped my hand with tears in her eyes and thanked me for sharing with her.
God still seems to be at work in us and through us, through all of this.
You may ask, "What do you need?" The answer is, simply, "In many ways, we don't really know, right now." But we know we need friends through the process. Somehow, when we have a need, what needs to happen, happens. You have been a wonderful part of that process many times. Right now, we just need the strength to keep putting one foot in front of the other. The trouble is, we are on a stairway to heaven... and we can only see one step at a time. Until He shows us the next step, we just have to wait and trust. We're trying to not rush ahead of Him or lag behind... but just to be... here... now.
Thanks for waiting with us... This stair would be mighty lonely without you.
Steven and Rachel