Saturday Noon

Chris had a relatively good night last night and this morning (Saturday). She has been infused with her regiment of ant-infection, anti-nausea, anti-anxiety drugs, which has made her comfortable but sleepy. Generally she slept well, (but I however will be scheduling another back surgery from sleeping in this dang chair all night) and she actually ate half of a bagel and had some juice this morning. The amyloid team will be in this afternoon and may allow her to go back to the apartment tonight if she can keep her food down. She continues to lose weight as she is not eating, but we are all hopeful that will improve when her nausea stops.

Abby may come in to visit her today, but will need to wear a mask as we are now tightening down on exposure to infections. Melissa and Stephen are in Iowa as Stephen is competing in the National Junior Elite Triathlon Championships this weekend. They have been calling regularly to check in on her.

Overall, it has been a hell of a week. But now we need the melphalan to have done it's work and the replanted stem cells to wake up and start producing her new blood system. Throughout this arduous period of vomiting, nonstop nausea, aches, 100's of injections and pill taking, I have not heard her complain once. Literally, she has taken this with an amazingly stoic attitude and has not shed a single tear or even expressed a hint of frustration. She knew this was going to be a hard-fought battle and she has gone in with guns blazing. It would not be possible to state how proud I am of her. It would also not be possible to tell everyone how thankful we are for the incredible support we have been given from our extended support system. Chris' sisters have been fantastic, all of our families, friends, and colleagues have been incredibly helpful. This support has allowed me to focus on job #1.

Just as an aside, a quick comment as to how the world and God work in mysterious ways. June 20 was declared by a scientist in the UK ( http://www.ajc.com/health/content/health/stories/2008/06/20/happiest_day_0620.html)
as the Happiest Day of the Year. I couldn't agree more.

Happy Birthday Chris!!

Just a quick update, with more later, but to let interested parties know, Chris was infused with 6.2 Million of her own stem cells today. Everything went successfully!!! At 1PM this afternoon, they drained the last of 4 bags of thawed stem cells. I think there was a tube or a line for each single stem cell as it was amazing how many different things she was connnected to. This was the last of three major steps in this process 1) the stem cell collection 2) the malphalan high dose chemo and 3) the stem cell replant. When you consider the fact that we are all born with a finite number of stem cells and that those stem cells have never been outside of her body before and they took a 1 week journey to the deep freeze, it is pretty amazing. I doubt any of us truly understand the power of stem cells. I'll avoid politics here, but I am confident saying that these particualr stem cells will give Chris her new lease on life. It's her new birthday today. Happy Birthday Chris.

Thursday Evening - Re-admitted to the Hospital

Because tomorrow is a critical day and potentially one of the riskiest, the medical team has decided to admit Chris back into the hospital tonight. Her nausea has been stabilized with a list of medications that even the Doctors can't pronounce. She has been sleeping most of the day, but this is better then the non-stop vomiting. She still has no appetite at all, and to get her to eat a couple of spoons of soup requires incredible persuasion skills.

The stem cell collection will occur mid morning tomorrow (Friday). This is hopefully the start of her new life of wellness. I know a number of people who have told me already that this is their birthday (June 20) and it is a great day to have one. Her first birth date was December 27 and she always claims she gets "jipped' because she gets fewer or combined presents with Christmas. Now she will have two birthdays. I know for me, I can't wait to celebrate two birthdays with her for many many many years. I would even say that June 20 will become the most important day of our families life.

The process is incredible. Here is a link that describes the process in very simple terms:
http://www.medterms.com/script/main/art.asp?articlekey=4846

Although Chris does not have cancer, the approach is the same, but in her case the intent is to kill the defective plasma cells creating this protein.

So as of 8:00 pm Thursday night, Chris is resting comfortably, all vitals are stable, and the chemo is currently killing her blood cells. The stem cells she was born with will be replanted tomorrow and our prayer is that we have killed the bad plasma cells that are causing such damage to her heart. Thanks again to all for the countless offers of support and the incredible number of prayers.

Thurs Noon - Very Tough Night

Chris had a miserable night, basically up the entire time with non-stop vomiting and nausea. We got in early to the center today and they put her on an IV for the vomiting. She is having a very difficult stretch, but she is being very strong as well. My guess is that she will sleep most of the afternoon. They also came in and did acupuncture for the nausea and she felt that this really worked.

She really has not eaten in 2 days, and her weight this morning was 108. The good news is that her lungs have really cleared up significantly, so this is a positive.

Chemo - Day 2

Done!! Two rounds of an incredibly toxic drug designed to kill blood cells that in reality will hopefully stop this disease. Last night, while getting ready for bed, we both agreed that things had gone very well (yesterday). However, this morning, Chris did not feel well at all. She was very nauseous, a bit lightheaded, and vomited the little breakfast that she had nibbled on earlier. She is retaining fluids (3 lb's worth) and this has caused swelling in her legs and abdomen. The medical team debated this morning whether to only give her the smaller dose or continue with the stronger dose. In the end, they wanted her to make the decision. The stronger dose (200Mg) is much more toxic and the side effects much worse. But as always, Chris went the tough route. The success rate of remission is greater with the stronger dose, but she will suffer a more difficult period for a month or so. Overall Chris had a tough day today, and it is only going to get worse. I think the reality of how bad she is going to feel is going to hit sooner rather than later. Tonight, she is not feeling well, can't eat anything, and has little energy.



Tomorrow we start a much more intensive potpourri of drugs. She will be taking drugs for nausea, infection, mouth sores, etc. The regiment is incredibly scripted. This will continue for a month. Friday is the Big Day as they say around here. This is when they replant the stem cells and start her from the beginning. They call this her new birthday, and knowing all things are going to go well, it will be June 20. As I have stated earlier, she will have zero immunity system, but the newly replanted stem cells will start waking up from their deep freeze outside of her body and slowly begin producing the cells we all take for granted - the red blood cells, white blood cells, and plasma. The actual stem cell replant is extremely hard on the body, so it will take every ounce of Chris' strength. But we all know she will do this.



Chris' siblings have been a huge help. Her brother was great last week and her two sisters have just been incredibly helpful. They both have left their own families and are living at the house. Whether it is running errands, doing laundry, helping the kids, running things into Boston, it has been amazing.



Chris has been very strong so far, and she will need to be even stronger going forward. This is going to get worse over the next 5-7 days, so everyones prayers and support will be greatly appreciated. They certainly have made a difference so far, and we are both very thankful.

Chemo (Melphalan) - Day 1

One down, one to go. Today Chris did an outstanding job of taking the high dose (200mg) of the chemo. We have been told that the two day dose is the equivalent of many months of normal chemo. She was a champ today. It is a very interesting process. As the dose is so strong/toxic, it can actually create lesions on blood capillaries. The most troublesome area is the mouth, so prior to receiving the chemo (through the catheter in her chest), she has to pack her mouth with crushed ice for 30 minutes. This constricts the blood vessles and reduces/prevents the lesions which might form. The actual chemo drip takes only about 20 minutes, very quick, with all the shaved ice she can stand during this period. It is amazing to think that this small amount of drug will effectively kill every cell in her blood system over a period of a few days, including the plasma cells that are creating the amyloid protein. It will also kill all of her immune system, which will be wiped out quickly. As such, she is required to wear a surgical mask over her nose and mouth at all times outside of the apartment or the clinic itself. She can't touch a door knob, an elevator button, or breath any open air. She also has a very restricted diet. No foods that are fresh (that might have exposure to an airborne disease). This means no fruits or vegetables, no restaraunt food, nothing but packaged meals.
They apparantly had a long debate about the dosage among the doctors and decided the best approach was the stronger amount. With the heart damage, it is critical that they stop any further amyloid deposits and they thought she was tough enough and young enough to tolerate the side effects which may be very severe. As Machiavelli said, the end justifies the means. If she can tolerate the side affects for a month in order to get a higher success rate, it is worth it.

Tonights dinner was a three cheese tortolini with an alfredo sauce and some slices of cheddar cheese. All prepackaged, and of course it was overcooked by the new chief chef. But, the direction from the doctors is to overcook everything, so that is a simple instruction someone who overcooks all the time! We are generally doing well in the new apartment. The views are spectacular (21st floor) and we are close to everything. The parking is underneath the building and a straigh shot down to the car from our floor. It couldn't be easier. The concierge service keeps reminding us that they can get us reservations or tickets upon request, but unfortunately we aren't going anyhere.

Chris' spirits have been very high today as we feel like we have made great progress with one of two chemo's done. Unfortunatly this is the easy part. We are told that next week she will hit bottom. Losing all her hair, vomiting, 22 hours of restless and groggy sleep per day, etc. The trick will be to avoid all infections and to immedualty address any hint of a fever or lesion.

All the kids have been calling to check up on the day. All three of them have been great, and Chris' sisters are both at the house keeping things under control there. As of Monday evening, things are going very well considering the seriousness of what we are facing. Everybody has been willing to help, everyone has been offering their prayers, and we are incredibly fortunate to have the combination of the best medical care and expertise in the world, the support of our family, friends and colleauges, and the financial capabilty to provide a very nice living environment as we fight this disease. Day two will be another step in counquring this!

It's a GO!!!

Great news today!! They did a lung x-ray and things have improved significantly since Friday. They increased the amount of diuretics significantly over the weekend and this has done the trick. The diuretics (Lasik) reduce the edema (swelling) and you can see this in her legs and she can feel it in her breathing. The doctors were very pleased to see this and have given the go ahead for the chemo. Now the big debate is whether to use a very high dose (200 mg) of Melphalan) or a reduced scope (140mg). The higher dose has a higher success rate but it also has much more toxicity and worse side effects. The doctors are debating whether she can tolerate the higher dose, with the lung specialist stating that he believes the lower dose is the right option. So we are a GO. We had dinner at home tonight with the family and then moved to the apartment in Boston. This will be our germ free cave for the next 4 weeks. We have Lysol wipes, Purell, hand soap, etc. everywhere. Chris also starts a regimen of drugs (13 different prescriptions) which requires an advanced degree in pharmaceuticals to administer. That is Steve's job, as the caregiver, to manage all items outside of the Amyloid center. He will do all meal preparations (not a strength), all cleaning (not bad at it), all transportation, shopping, phone updates (pretty good), psychologist (better than most) and be the medical advocate (excellent).
Tomorrow will be a major milestone in beating this thing.

Long Weekend

It has been a long weekend. Stephen had a triathlon on Cape Cod (6th out of over 700) on Saturday and both he and Abby have been working as lifeguards. Chris' sister and brother (Sally and Tim) left to go back to PA on Saturday after being up here all week, and here other sister Debbie arrived. She will be taking charge of the household while we are in Boston. We went to a graduation party Saturday night, but Chris is clearly slowing down, not eating, and feeling very anxious and losing hope. The discussion on the lungs on Friday has thrown us for a loop. Things were going so positively, but now we have great concerns that things have progresses so bad that the entire course of treatment may be put on hold.
We had a private prayer session with our Pastor after todays service. He was very supportive and calming and reconfirmed that we are not alone in this very scary journey. In fact, that is obvious every day. The support from friends around town has been beyond amazing. The meals, the errands, the phone calls, all just incredible. As a former candidate wrote, "it takes a village to raise a child" but in this case it is more like " it takes a village to help those in need" and we have been on the receiving end of that.
Chris has also been trying Reiki, and that seems to have been especially successful for her. This is a Japanese approach for stress reduction and channelling "life force energy". Steve is always the ultimate skeptic, but Chris is very clear that she is getting benefit from it so we will continue for sure.
Tomorrow is going to be a difficult day. We don't know whether it will be a Go, or put on hold. We are both ready to start the chemo as soon as possible, but if her body can't tolerate it, it can be very very bad. We'll leave ourselves in the hands of the Doctors and God.