September 23: Day +83

Heaveno!

Holy cow, where to begin. I have to begin with another acknowledgement. The comments are still rolling in every five to ten minutes from last night's post! I cannot thank you all enough for the love and energy you put into your responses. It's not just the quantity of responses that blew me away, it is the quality. You all poured your hearts and souls and stories into your comments like never before. THANK YOU! I fell SO DIFFERENT posting tonight. I do not feel like I am posting into the abyss of the internet tonight. I feel like I know who I'm writing to. I feel like I know you, I FEEL connected tonight. For those of you that posted, thank you. For those of you that simply prayed, thank you. For those of you that sent your thoughts, intentions, and positive energy, thank you.

Remember, I have said it before and I'll say it again, I see no difference between prayer, intentions, thoughts, vibes, wishes, hopes, and positive energy. I believe they are all heard and felt, and that they ALL contribute equally, because the intention behind each one is the same. If I sang you a love song that I wrote myself, you wouldn't discount it because of what key I wrote it in, would you? You wouldn't say, "Those were really heartfelt words, but I only listen to love songs written to me in D major, and that was in A major, so go take a hike."

For those who didn't read the comments, I encourage you to. They will refill your faith in humanity if it is at all waning. They have refilled mine. For those of you that did not comment last night, please consider commenting and answering the same question: "Why do you come here? What do you get out of this journey?" I humbly ask again, because of two reasons: the first is that I now feel so much closer to those of you that shared your story last night. I was FILLED with anticipation tonight to write to you! I normally don't feel that way. I feel like we're pen pals now! I know about your families, your faith, your beliefs, your journey to finding us, your trials, your gratitude... there is an intimacy present tonight... all inside a world-wide conversation that we are having together. Last night, we heard from people all over the U.S., Canada, Australia, Sweden, Spain, England, Portugal, and Bulgaria. That is awesome. If you are somewhere other than one of those places, let us know! We are a community. We lift each other up. We come to this common place from all walks of life and all corners of earth to feel something. Hope. Gratitude. Love. Faith. These are things that do not belong to any religion or culture, they are feelings that belong to us all as human beings, and as such, we feel a certain undeniable craving for them in our lives.

Let me tell you how YOUR presence impacted Bella's and my life today... remember I said there were two reasons I'd like to hear from more of you? Here's the second reason.

Today did NOT start out as a good day. We have a new BMT doc today, and when I said to him before rounds that we'd catch him up, and that it's been a roller coaster, he rather nonchalantly remarked without even making eye contact, "Yeah, that sounds like Transplant." One of my pet peeves is when anyone in a patient care position lumps me or my family into a 'segment.' Suddenly, Bella and everything she has endured in the PICU for 81 days now was reduced to a casual one-liner about the entire transplant population. Not a good start for him. Over all, I wasn't displeased with rounds, until the end when Lori, our absolute CHAMPION of a nurse, asked the attending doc what our plan was when faced with these unbelievably low blood pressures. The attending doc had no plan, and just kind of shrugged her shoulders. That did it. In my most controlled voice I could, I said that I wanted Dr. Sidell (spelling?) to come by and look at Bella's right arm for a possible new A-line either today or tomorrow at the latest. Three days earlier, the very same ICU doc told me we couldn't tolerate anything lower than a mean blood pressure of 50, and then promptly let Bella hang out in the 30's for two days because people couldn't believe that the A-line was still working, and just didn't believe it was that low since clinically, Bella looked fine inside and out.

Dr. Sidell was in her room by 11:30 this morning, and said not only could he put a new line in fine, but that the current line is working fine, and that there was no need for a new one at this point. Okay, now at least we can get everyone believing the A-line again. GOOD.

However, only moments before, the new BMT doc came in to see Bella. I told him that I felt like the ICU doc was giving up on Bella, and that she was not following the plan we agreed to just the day before. He very blankly told me that Bella had Capillary Leak Syndrome (CLS) and that patients who have it this bad this far into bone marrow transplant have little chance of surviving.

I can tell you that the way he looked at her while saying this... as if she was already too far gone and out of reach... as if he wasn't even going to get in the water to help save her... as if she was just another statistic in the transplant population... made my blood freeze.

Since when did she have 'Capillary Leak Syndrome?'

Not once in rounds was that diagnosis given. "Hypotension" is the only word that has been used along with occasionally LVOT obstruction. We've talked about her leaky vasculature, and that this is common in BMT and usually corrects itself by about day 30.

I was hoping the new BMT doc was going to keep the flag for Bella waving until we got another ICU doc who was willing to at least keep trying to prop up Bella's BP while we worked through this sedation wean (the whole reason for getting the trach). Now, I feel like he's written Bella off as well. After all the docs left, I was left alone with Bella.

I can tell you I have never felt so alone. The room was dark, and I unwrapped Bella's right hand and held it in mine while she napped. I just couldn't let go. For the first time, I felt like my time with Bella might be drawing to a close, and that I better hold her every second I could while she was still with us. Mind you, I have never felt before today that Bella's life is in danger, and I have never felt that we were 'running out of time.' However, I began to feel those feelings alone in her room today for the first time, and it was terrible.

Finally, I was too hungry to stand any longer, and left to grab lunch. On the way back to Bella's room, I stopped in the rest room and as I washed my hands, I looked at my reflection in the mirror. I looked right into my pupils, and reminded myself that God alone had the power to reverse Bella's condition in that very instance if he chose to. I felt a sense of calm in turning Bella's burden over to God. I felt like it was off my shoulders and onto his, and that he could certainly handle it! I also said that the docs could all go to heck as far as I was concerned. They go home at the end of the day, but this is MY kid, not theirs. Think they would give up if it were their child? Heck no! I also kow that those who survive insurmountable adversity against all odds primarily do so because they BELIEVED they could. Just look to the accounts of the holocaust survivors who admit that the only reason they think they lived while their friends and family perished from starvation and disease all around them was an unshakable determination and belief that somehow, someway, they just HAD to survive no matter what. That undaunting spirit carries the day so often, books are filled with their stories.

They are called "Chicken Soup for the Soul." I am proud to have met Mark Victor Hansen, one of the authors and creators of that best selling line of books. We share a close mutual friend, and Mark knows about Bella. That franchise of books is one of the best selling franchises of books in history with more than - get this - more than 100 MILLION copies in print in 54 languages.

What is the common theme throughout? Inspiration, motivation, triumph over adversity. People beat the odds all day every day all over the world against all the expert's opinions.

So, the only expert I listen to is God, and he hasn't told me to give up yet, so I'm not.

Okay, okay, here's where you all come in. When I got back from lunch, I started reading your comments to myself. Then it hit me, they were for Bella as much as for me and Angelique. So, I pulled up a chair, held Bella's hand, and read each and every one of your comments aloud to her for over an hour and a half today.

The result? Not only was my desire to fight on GALVANIZED by your support, but Bella's blood pressure was the best it has been, and her heart rate the best it's been since Sunday or Monday! YOU WERE THERE, in that 10x10 room with Bella and me today. YOU WERE THE ONES WHO GAVE US A SECOND WIND. The BMT doc and entourage came in while I was reading, and he asked me if I had any other questions about her syndrome or long term or short term prognosis. I told him, "We have a plan, and it's working. When we get to the end of her sedation and we still don't have a blood pressure, you and I can talk then. Until then, you and I have nothing more to say to each other. And by the way, I'm reading Bella letters of support from all over the world. We get about 40-50,000 hits on her blog a month, and none of them are giving up, and neither am I."

Take THAT you know it all and chew on that for a while.

As he was leaving, I told him that Dr. Wagner was coming back later today, and that he had some new ideas he wanted to run by us.

"Those are MY ideas that I gave him!" he quipped in response.

Seriously.

"Well, I'll make sure to quote the primary source if they work," was my reply as he stormed out the door. Don't let the door hit you in the...

So, Dr. Wagner walked in as I was finishing your comments (as of 4 pm our time... I have a lot more to read Bella tomorrow!) with the attending BMT doc (Dr. Doom). Dr. Wagner is holding a research article. It is from Japan, and it is a case study of a child that had a very similar case as Bella with the CLS, VOD, renal failure, etc. They gave the patient a drug called VEGF, and it reversed the symptoms almost immediately.

Dr. Wagner also happens to know two of the Japanese researchers and is emailing them as we speak to find out more about how the patient is doing. He checked with the FDA to see if he could use it in this study and they said yes. He checked with our hospital's pharmacy to see if they carry it and they do. It is predominantly for adult tumor patients, so it has never been used at this hospital in a pediatric BMT patient.

Another first.

The ICU attending doc that is coming on service Monday has a specialty in the area where this drug is regularly used, and was quite enthused about the prospect of using it in this case. So, we will wait a dat or two to hear from the docs in Japan about anything else we need to know about the drug, and we will schedule its use for Monday or Tuesday.

Never give up hope. A miracle may only be an hour away.

Tomorrow, we begin printing all of your letters of home and pasting them all over Bella's walls. That way, when people see the avalanche of support Bella is receiving from around the world, maybe they'll jump on board as well. When you comment, if you are comfortable, please tell us your name and where you are from. We have some of the most amazing letters written, and we have no name to thank in our hearts. If you would prefer to remain anonymous, I completely understand, but today it was really cool telling Bella who was saying the beautiful words I was reading.

God night.