Waiting, waiting...

Happy Monday!

Not a whole lot of change today, but he's doing a bit better than yesterday. Slowly but surely, we'll get there! :) You can tell our mood is a little lighter today from the pictures! :) We have to entertain ourselves somehow! :)

Just a lot of waiting today and phone calls to make sure people are getting transfer docs. I have to keep on top of CHOC for sending stuff to Stanford and UCSF as they really want Declan to go to UCLA. But ultimately it's our decision, and so far Stanford seems to be ahead of the game.

We spoke with the transplant coordinator at UCLA today after leaving a message Friday morning. We asked her about statistics like "how many liver transplants they've done on babies this past year" and "what is their survival rate?" She was hesitant to give it out, but eventually told us. A whole whopping 3! I was like "you mean....one plus two...that kind of three?!?" And their survival rate is at 93%. On top of the fact that their security is horrible, they don't return phone calls very well, and she didn't want to give us any more information about their accommodations until we got there (i.e. Ronald McDonald house, etc), I just don't want to make another bad choice in hospitals again. I know no place is perfect, but I get a much better vibe from the Stanford hospital (which is actually called Lucile Packard Children's Hospital). But the CHOC doc told me that they like transfering to UCLA so they can continue and follow-up at CHOC after the transplant (i.e. they don't want to lose him as a patient). But Stanford was super-open to sending his care back to CHOC when the transplant is done, and something they do all the time I guess.

Stanford picked up the phone and talked to Luke right away when he called on Friday. He spoke to not only the transplant coordinator, but she's also an RN who knows her stuff. She knew that they didn't have any weird conditions that UCLA were asking for and said that she didn't know why they were so hesitant to take his case on as he seems to be a prime candidate for the transplant. I must have bugged the woman about 10 times today, asking dumb little questions, but she always called back within a short period of time. But she can't do anymore until his records are sent (CHOC had not faxed it to the right place on Friday I guess, which took all day to track the CHOC woman down to resend it...a whole day waisted...). But in speaking with the Stanford coordinator, she said that they do a third of all liver transplants in babies in the entire country, which comes to somewhere in the mid-20s. Their survival rate is published online (which I think is way cool) at 95%. And they are very amenable to out-of-towners and even have a preschool at the hospital for siblings like Liam. They also have a Ronald McDonald House, and contracts with local hotels in the area if for some reason the house is full that night (you have to request a room everyday...there are no guarantees or long-term stays of a room being available in future nights).

We also spoke with UCSF. It was a short conversation which basically entailed "I hope you realize what it means to do a long-distance transplant!" She wasn't as pleasant as the Stanford woman.

So with that, my mom, Liam, and I are planning to go up to San Fran to visit the 2 hospitals. I want to make sure I lay eyes on the place before I make a huge change again and transfer him up there. Luke will stay in LA to work and be with Declan during our visit.

So tomorrow and Wednesday will be big days. AFP levels, hospital consults, and big decisions will be made. The Mickey button got put on hold (he was supposed to get the temporary G-tube replaced) since the site looks "angry" from being infected. His Neutraphil counts need to come up (they are currently at 91 today), he needs to stop having fevers, and keep ahold of his electrolytes (his kidneys are going crazy right now, and they have started him on TPN, which is basically IV food).

Well, I'm off to bed for the long drive tomorrow. We have truly appreciated your sweet prayers and love. Thank you from the bottom of our hearts!

Love,
Christy, Luke, Liam, and Declan

Liam's so creative with the Bumbo seat. I guess from living in the land of cheeseheads, the Bumbo-head just comes natural.

Then he reels Daddy into it

Declan's new pad in the OICU

But when Grandma's around, he doesn't stay in the crib for long :)
(Just ignore the pink pacifier...that was the ONLY color they had, and it is a MUST HAVE! Luckily Declan could care less what color it is!)

Chest X-ray Results

Okay, just a quick update...

The chest X-ray finally came back (after a 10 hour wait!), and is negative! YEA! So again, I'm not sure what's causing his tummy and respiratory problems. No change in his status since my last entry. Still running a fever, low saturations, labored breathing, huge-o tummy, and just plain irritable.

So we'd appreciate your prayers for guidance. Hopefully something (which is minor and easily fixable) will be done to help him get through it. They should have a game plan by tomorrow at rounds (before lunch usually). Thanks again and have a good night!

Christy

Moved to the OICU

Hello again!

Today Declan was admitted to the Oncology Intensive Care Unit (OICU) at CHOC. His temperatures have not gone down much, and remain high as we speak. His Neutraphils are now at 63. But the thing of most concern is his ever-growing tummy. It has really gotten huge (which is saying a lot for him; his belly button looks outrageous), and there is no good explanation for it right now. He had an abdominal X-ray done, which showed gas...but not an extreme amount. They don't see a hernia or a bowel obstruction, but it just keeps getting bigger. Also, he has been de-saturating all day. Also a chest X-ray was done, which is not back yet (even though it's been over 7 hours ago!). He's dropped down to 74% saturation tonight, very congested and struggling for breath. So he's on oxygen right now (but no intubation or anything yet). They discontinued all feedings since last night (yet his tummy keeps growing!), which caused a low-40s blood sugar this morning. They then gave him a super-sugar dose which skyrocketed him up to 242!!! So they backed off and he's happily around 100 since this morning. They are considering starting him on TPN so his blood sugars and organs will be happy for nourishment. But his kidneys will take a beating for that, as it did last time he was on TPN. But at least it's something...

This just brings back nightmares of round one. I thought he'd do better this round since his 2nd round went so well. I'm SOOOOOO glad they didn't start round 4 early! Thanks for your continued prayers during his stay in the ICU. It's nice that he's getting so much attention from the nurses (it's a 1:1 ratio in there versus 1:4), but I wish it were under different circumstances. Oh well, this too shall pass.

Thanks too to Liam's Aunt, Uncle, Jim, and Rebecca for watching Liam swim with the girls for a few hours while we ran down to the hospital. It's nice to have you so close! :)

Lots of love,
Christy, Luke, Liam, and Declan

This is Declan's newest in comforts: The vibrating snake (the blue thing), the swing going, and classical music on. (This pic is taken before going to the OICU)

Liam in his playroom glory...which one, which one...too many toys, too little time

But cars or trains will almost always trump any other toy (with the exception of the drum set they have in there)

Say bye-bye to the old room...

...but the boy's are too pooped to say hello to the new one

He can sleep anywhere...just like his Daddy

66 Neutraphils and a 104 fever!

Today was a tough day.

It all began with a 40 degree temperature Celsius (thats a massive 104 degrees Fahrenheit!!). We also found out that he's only got 66 Neutraphils helping it fight that off. So needless to say, his counts are bottoming out. Plus he has been throwing up like a madman, so they decided to stop feeding for the night to give his GI a time out. The poor thing just looks and feels awful. I haven't seen him smile in about a week, which is unusual for him. He just feels so rotten. The thing that calms him is holding him upright with the patented "bounce and rock" that mama has perfected. Also, the only way he will sleep is in his swing which the nurses can't thank me enough for bringing in...I think by far the best purchase I've ever made! :)

I spoke with the new Oncologist on this weekend (he's the head of the Oncology dept), who I've spoken with before. He enlightened me with some interesting information today. He said they will NOT give the 4th round early (like Wednesday like they were thinking), especially while he's feeling as crummy as he is right now. When they give it, they will wait for him to bounce back which was a big relief. Also (which was a big enlightenment), I found out that the chemo buffet of drugs he's been on since he started is only effective if there is NO tumor present, which gives them reason to think that there still might be reminents of a tumor somewhere (along with that crazy AFP jump he had Monday) which they can't see. They can't prove another tumor in his liver by any of the scans, but aparantly Cisplatin only works after the tumor has been removed. That would have been good to know before!!!

But as far as the transplant, UCLA will only consider it if they can see a tumor (with NO metastasis), which is why they want to see the scans for themselves. We are also waiting to hear from Stanford and UCSF, but his docs don't seem too keen on sending him there. I just figured, they more heads involved, the better....especially heads that know what they're doing, and have seen this type of thing before! I know that Stanford does more baby liver transplants than any in the entire Western US, and their survival rate (which they readily publish...not something you usually see) is much higher than average in the industry. So we're leaning toward Stanford, but it all depends on what they and the rest of the other 3rd and 4th opinions say! :)

We went up to UCLA today to just look around at the facility (it's about 2-1/2 hours away from our apartment WITHOUT major traffic...I can't imagine what a nightmare it would be WITH it). The children's hospital isn't even a children's hospital like I was thinking...it's the 3rd floor of the hospital! I got the impression that it was a separate building. It was nice though...a lot like CHOC (shared rooms, but much busier than CHOC). Nothing too overwhelmingly exciting. Their security is awful. We just walked right in and up to the floor without being stopped or flagged to sign in...nothing! I was surprised. If Declan was there, I'd be afraid to leave him alone!! :) You never know who could come in! Sadly I have to think of that now!!

I'm not sure that Stanford or UCSF's accommodations would really be that much better. That's not why were going to one or the other. But it's nice to know what environment we'd be going to before we transfered his care.

Well, we would appreciate your continued prayers for him this upcoming week. Thank you so much for your encouragement and love!

Love,
Christy, Luke, Liam, and Declan

You can really see Declan's right hemi here!

You can tell that it was a long day at the hospital today

Mama wants to take away his ouchie...I really wish I could, but the cool washcloth on his forehead helps.

But daddy's arms make it all better

Liam looks like he's running for office soon

Next week

Friday is finally here!

It's been a long week here. I finally got to nail down my Oncologist's toes and speak with her for a while about next week. It will be a huge deciding week!

Everything depends on his upcoming AFP levels on Monday (which we won't find out the number until Tue/Wed). If it goes down, HURRAY! But if it continues to rise, we have a dilemma on our hands. Their idea sounds absolutely horrible to me, and just makes me cry to think about. They want to start the 4th round early, like Wednesday (keep in mind he still hasn't bottomed out yet from the 3rd round!) and give him 75% dosage of the original Cisplatin!! I was like NO WAY! The 1st round was a nightmare, and upping the Cisplatin and giving it early??? Are they CRAZY!

Also, there isn't a definitive answer yet from UCLA on their plans for Declan (I am still in the works with Stanford and UCSF's 3rd and 4th opinions!). They said 2 things need to happen in order for them to go forward with the transplant:

~show no signs of metastasis
~locate the tumor in his body

Well, his Oncologist doesn't have a definitive answer on either of those. Remember not too long ago, we had a bone scan that showed a possible metastasis which was then followed up with an MRI and CT which showed nothing there. But they still didn't like to hear that there was a possibility at some point of another tumor.

Also the second point is fuzzy too. They cannot find a new tumor in his liver! They said it was "a mess" in there and could not find a new tumor. But in order to receive a liver, a tumor MUST be there! So they're not too thrilled with the Onc's answers on either of those points.

Basically they wanted EVERY scan he's had FedEx'd to them so they could see it for themselves and decide about his care. Also, the same is being done with Stanford and UCSF, although they did not specifically ask for them yet...I had to basically make the Stanford and UCSF calls ourselves (they are really pushing for his care to be at UCLA). I just figured that the more heads involved in Declan's care, the better. The last time I took the hospital's advice on transferring to a new place I ended up with my husband being a prospective attempted murderer. (Oh Lord, what a MESS that was!)

From doing a bit of research, Stanford and UCSF (Stanford specifically) has done more liver transplants under 2 years of age than any other hospital in the western US! And their survival rates are one of the best (95%). If we're going to be transferring hospitals anyway, why not just go to the best place?!?

Speaking of Luke's run in with the law (sigh)... The entire Oncology department (the entire 3rd floor) at CHOC got a whole new intercom/notification system that I can't help but think was due to Declan's case not that long ago! It was crazy, but a whole new monitoring system is now in place that tells the nurses station better when alarms are going off!! Wonder of wonder, miracle of miracles! :) I'm glad that they are taking what happened with Declan seriously, to avoid it at all costs in the future. He is still getting a nurse to sit with him 24/7 which makes me feel so much better about what happened. They still have no clue how he got unplugged from the wall and the detective has not shed any new light on the incidence that night.

But getting back to Declan's plan, if a tumor has metastasized they are going to be shooting in the dark. According to them, they could try experimental chemotherapy that hasn't been proven to work or not work, and/or try exploratory surgery to see if they could find a tumor since the scans aren't showing a whole lot. That terrifies me! When they kind of have that uncertain look in their eyes like, "boy you're screwed," it makes me SO nervous! If this thing metastasizes, he has a very small chance of survival, especially someone who has not responded to the proven chemotherapy that's worked in the past!!! I know that God has a plan in all of this, and that our journeys that we didn't understand before have proven to be for the best. But watching my son struggle and fight for these past 4 months have been so heart wrenching and exhausting, yet he's the one with the gleam of hope and strength in his eyes.

Thank you for all of your prayers! We will really need them in the upcoming week. We have been so blessed with the outpour of love, and thank you from the bottom of our hearts!

Love,
Christy, Luke, Liam, and Declan

Declan doesn't look too thrilled about the picture...

...but soon gets some good old Grandma love (how sweet is that picture!?!)

AFP Elevation and Transplant Talk

Yesterday we were slammed with Declan's new AFP levels being over 83,000. They more than doubled in a week! This huge jump has woken us all up to the realization that a transplant may be his only hope at this point.

(You can check out its trend at the left of the page)

At this point it appears that chemotherapy isn't getting rid of the cancer. So after we consult with a few transplant docs at various hospitals, we will be put on the list and hopefully receive a new liver soon. A living donor doesn't appear to be the best option (one of our family member's donating a part of their liver) as people have been known to die from the surgery...something that they want us to steer clear of. The best choice for Declan is a full transplant.

I have heard the wait on the transplant list can take around a month, especially if he goes straight to the top since his need is pretty severe with the jumping levels he's having. So, they're planning to do a 4th round of chemo while we wait.

We are getting many opinions (Dr. Marcio's, his Oncologist, his ND, UCLA, Stanford, and UCSF too) and putting lots of good heads together to come up with Declan's best interest in mind. Thank you for your many prayers and support while this transition is taking place.

This has of course taken the wind out of our sails. We kind of had "transplant" at the back of our minds, hoping that it would never come to that. But God had a new chapter already written for us that we didn't realize we'd be in!

In the meantime, our search for a new Preschool for Liam is on. Liam's preschool has given him until Friday to find a new place. To make a long story short and put the best application on it, he was just not meant to be there anymore. It was nothing that Liam did. I will always side with my son if I see that he hasn't done anything malicious (that's what mama's do best), and think that he just needs a different teacher and Preschool director with more patience. It just pains me to take him out of a 3rd Preschool in less than 1 year! I feel so bad for him, having to go through everything that Luke and I are dealing with, not understanding why or what is happening. Once he gets a routine with some stability, I think things will fall into place for him. Right now we just need a lot of patience (which is running thin at the moment) and understanding with him.

Our upcoming plans will unfortunately include more change. Declan will be transferred to the new hospital within a week for images and typing to get onto the list. The closest candidate, UCLA, is 2-1/2 hours away on a good day! So, we aren't sure what we're going to do with the arrangements for Declan, Liam, Luke's work, and my health too.

My Myasthenia Gravis is acting up again (go figure!). I'm having a hard time trying to get an appointment as UW won't release my records without an original signed consent, which then takes 7-10 days to process and mail to the new Neurologist. This could take months to see a new Doc! So luckily I have my meds from before which I just had to start taking again. I hate self-medicating, but I really don't have any other option as my case isn't an emergency. I feel bad for whining about it, as Declan's got it so much worse!

Also, I had 2 suspicious moles removed and biopsied. When I went back for my post-baby checkup, the OB didn't like them and wanted me to see a dermatologist. Well, a lot was going on and I never made it in until this week. The Doc removed one, and just took a piece of the other for biopsy. I will find out the results in 2 weeks. I got 2 stitches! :( Again, pathetic compared to Declan's massive resection scar with like 40 or so??

Luke's dad just left today after visiting and dropping off an extra vehicle to use. Trying to do all of this with 1 car got interesting at times! So, we are grateful for the extra set of wheels! :) TY! Also, my mom flew in today to help out for about a month with Liam and all the behind the scenes stuff that we haven't had time to get to (i.e. laundry, dishes, cleaning, etc). So it'll be nice to have the help!

Well, it's late and I have WAY too much to do (as always!)! Thanks again for all of your prayers and love!!

*****

Pose for a Family Photo

Declan's attempt to get that camera

Grandpa J throwing Liam into the water (don't worry, that's the deep end...and yes, he wanted to be thrown in...about a thousand times!)

*****

Declan's AFP, Dr. Marcio, Medi-Cal, and his G-tube

A busy day (is there any other kind?).

Declan's AFP came back today. It was drawn on 7-16 and is 40,797. It came down about 10,000 points!! Yea! I got all excited, and threw myself a mini-party when I heard, thinking NO TRANSPLANT!! It was then smushed when I heard that they are still planning to go ahead with it at this point. The attending doc said that unless we see a significant drop in his levels, a small one like that won't alter his recommendation of a liver transplant at this point. But remember, he still has a few weeks until the ultimate decision is made. Everything depends on how this third round goes with his AFP. Every Monday, new AFP labs are drawn, so we'll be able to watch it until the time comes. I am planning to have a conference with him by the end of this week to sit down and ask him all kinds of transplant questions. But we are just praying like mad-people that it won't come to a transplant, and that his AFP levels (ie cancer levels) will respond to the chemo.

I also spoke with Dr. Marcio today (the leading hepatoblastoma in the country at CH-LA: Children's Hospital of Los Angeles ). I had a few questions that I really didn't get too many straight answers with...but remember, Declan is not a straight-kinda case either...

1) Q: Could he explain the steady rise in his AFP levels
A: He basically said that AFP is the best indicator for detecting the levels of cancer in his body (along with scans of course)...this we knew. It's not the number per se that is the biggest trigger, as it is the change in the levels. If you see a large jump in a small period of time, then it is alarming. Remember, Declan's doubled in a month....that's not so good. But to say that 40,000 is good or bad is not enough to make a conclusion with. Initially it sounds bad as it should be zero, but that's not always the case. I then told him about the numbers thus far. He then said that there are other things to consider besides AFP that plays a role in Declan's case. He is not a cut and dry boy of course, and a detailed look into his medical records needs to be looked at before he can make a call of "transplant or no transplant". He basically said, you either need a 2nd opinion with me, or your docs need to sit down with me and do an in depth discussion of his case before he could say yes or no. He said that there are a select number of cases that actually need transplants (not that Declan would or wouldn't fall into that scenario), but very careful decision-making needs to be made in an accurate and timely manner, where all other avenues have been exhausted. Once the third round comes and goes, there is a small window in which we have to jump through to get a transplant. He said it happens very fast when you get the call. But you don't want to get it too soon (there's no sense in removing an organ if he doesn't need it to be), nor do you want to wait too late (metastasis is worse of course). There is a very fine line as to when a transplant should be done. Me asking him whether he would suggest it at this point seems a little early, but he said that it is definitely something I need to understand and research if the time comes. Thinking and talking about the idea of it is definitely something we need to realize and consider to be an option, but for now, a decision should not be made yet until that third round is over.

Also, I found it interesting to note that he was a leading Doctor to start the whole idea of "injecting chemo directly into the liver." (I asked him if he'd heard about it...that was a dumb question :) ) He apparently is one of the forefathers to this new type of surgical-targeting-chemotherapy, and again would need to look at his case to assess if that, plus a transplant, would be right for him.

Also there are "living donors", where a family member would donate a part of their, matched liver. If this whole transplant thing comes to fruition, it's another idea that will need to be discussed in the best route for him.

2) Q: What are "normal" AFP levels for kids with BWS? (kids with BWS have naturally elevated AFP levels)
A: Of course, another blanket answer of...everyone's different, including kids with BWS. There is no magic number as to what is considered "normal". It's the change in levels that is normal/not normal.

3) Q: His thoughts on an ND consult (Naturopatic Doctor).
A: He made it very clear that his specialty is not natural remedies. That does not mean that there is not a place for it. He said that he encourages patients, and finds them to have the best results, if there is involvement from multiple professionals from all aspects of his care, to see and do a consult for Declan. There is no one person that will solve all of his problems, with a complicated case like Declan's. He said that he hasn't seen that an ND has done "miracle work", but he said as long as there is very good communication between the ND and the Oncologist (as to what they want to do), where it is not going to hinder their aspect of it, he has no problem with it. He said that he has not seen one study done with natural remedies AND hepatoblastomas specifically, but if that's something that we wanted to try (as long as the ND doesn't step on toes with the other meds) it is up to us.

So a lot of my questions didn't yield a "yes" or "no" answer, but I definitely got a better idea as to how I need to approach it. I love the fact that he is willing to talk to me, even with how busy he is, and sit down and chat about Declan. He has a lot of answers that make sense, and doesn't "sugar coat" them and lead me to think that all of our problems will be solved if we go with option A. But it's wonderful to speak with him and lay it out on the table. So, I'm planning to have the Doc at CHOC discuss his case with him in depth during the end of the third round. I think it's a little early now to jump the gun and demand it, but if at the end of the third round they still think a transplant is the best thing, I want Dr. Marcio's "stamp of approval." He doesn't appear to be one of those doctors who just tells everyone to get a transplant. He seems very careful about it. But at this point, the CHOC doc I think is trying to plant the idea, so if the time comes, I'm not just slapped in the face with it.

On another note, we finally got a decision for our Medi-Cal application. They have denied Luke and I, and have given the boys a "share of cost" deductible that we have to meet before any benefits are paid per month. The deductible is $1,500 per month. It does not roll-over to the next month, and starts back fresh at $1,500 if we do not meet that number per month. I have no doubt that we will, but $1,500 a month is still a lot of money to spend before anything will be paid! So we are exploring other governmental programs out there that are based on need. Medi-Cal is ONLY income-based, NOT based on his situation, like WI did for us. So it takes a cold look into our profile and says "we'll only help a little bit". We are still pending on SSI, CCS, NCCS, a DDS Waiver, Healthy Families, and Medi-care. I have been one busy bee needless to say, trying to find something out there that will eat up our deductible. :) Luckily the Medi-Cal lady was really helpful and said that she's working on her end to find a loop-hole or another program that we would qualify for. Hopefully we'll find something...

Declan's G-tube is still a temporary tube into his tummy that will hopefully be soon replaced with a Mickey-button (no dangling tube coming out that he can pull on...he's been keeping the nurses busy with that one). He is one alert baby, and wants to see and feel what is going on! He's such a little Einstein! :) :)

Speaking of my cutie, there's a new 2 minute video I took today, that will be up by tomorrow (YouTube.com is down for maintenance right now).

Well, it sounds like it's going to be "hurry up and wait" again. We're planning to pray like mad-people that there will be a significant drop in his AFP levels, and would appreciate your prayers as well. We love them dearly. Hope the rest of your week goes well!

Hospitals for Declan

Hello!

Just a little update...okay more than a little. I'm sorry I wasn't too clear with my last email. I had a few people confused with my abbreviations. Sorry, I wrote that one kinda fast!

On Sunday, I spoke with the attending Oncologist at CHOC taking care of him this (and last week). He is the head of the Oncology department and the lead physician at CHOC. He is concerned about his AFP levels (which his primary Oncologist didn't really seem to be). He hasn't liked the trend in its steady rise from 22,000 since his liver resection and tumor "removal" (remember they were never able to get clean margins, and hoped that Cryotherapy--freezing parts of his liver--would take care of the rest; if not, chemo should do the trick). Well chemo, although devastating to his body as evidence of the first round, hasn't seemed to lower his AFP levels (even with the first, intense round he had 2 months ago). This has been the trend thus far:

around 4-9: 220,000
aruond 4-27: 150,000
5-4: 22,000 (after surgery)
6-4: 41,000 (post round 1)
6-25: 46,000
7-2: 48,000
7-9: 52,000
7-16: ? (post round 2...will find out the number tomorrow)

As I might have mentioned before, AFP levels should be at zero. AFP is a marker for cancer in the body. The higher the number, the more cancerous cells there are. So, the steady rise since his surgery is alarming. There has been no evidence of metastasis. Many thorough studies have been done to check for that (going to the lungs, bone, brain, etc), and nothing has been found. Numerous renal (abdonimal) scans have been done and quoted to be "a mess", though no new tumors seem to be growing. Since his surgery, they said it has been hard to determine what is what in his liver (ie liver regrowth, internal bleeding from the surgery). Though they do not think a new tumor has formed. But they do not want to wait and see either. Since his AFP levels (at the time the tumor was found) was at 150,000...we are at a third of that level and climbing.

In speaking with many nurses and docs, he seems to be a prime candidate for a liver transplant. Liver transplants are for patients with cancer, where chemo is not responding to the cancer, and in patients where no metastasis is found...like in Declan's case. Once it metastasizes, there is a very small survival rate. Most metastases from hepatoblastomas go to the lungs, a place where you can't just cut a piece out and it will grow back. So anyway, lets hope and PRAY that it never gets to that point.

I will speak with Dr. Marcio tomorrow (the hepatoblastoma guru at CH-LA...children's hospital of los angeles), on his thoughts about Declan (1. Would he suggest a liver transplant?, 2. Can he explain the raise in AFP levels?, 3. His thoughts on an ND consult...Nautropathic Docs?). I am eager to speak with him as he is the leading man (of liver cancer...Luke is my leading man :) ) in the country. His opinion means a lot to me.

I also met with the ND today (Nautropathic Doc). Although she thought she could help with his other symptoms, she made it clear that she cannot cure Declan's cancer. She said the worst thing I could do right now is yank him out of the hospital and bring him to her (not something I was planning to do, by the way!). But she thought she could help, by very slowly adding things that he's already getting via formula to his G-tube, for his hypoglycemia, nausea, and acid reflux to name a few. She wants to play it safe for right now. I meet with her again next Wednesday (after she checks the things she's thinking of) for clinical trials proving that it won't aversely affect his current medications. She's got her work cut out for her! :)

But getting back to CHOC's suggestions (a liver transplant), they want to see how this third round goes. It will start soon...maybe tomorrow, depending on his platelet levels (he has recently needed many blood and platelet transfusions). If his AFP levels continue to go up after the 3rd round, they want to send him to UCLA for the transplant.

My thought is, "they're planning to send him to another hospital anyway if things continue to go the way they are going, why not just switch hospitals to CH-LA (where the hepatoblastoma guy is) where they do transplants?"

Our family took a tour of the hospital (CH-LA) last night. It is massive! They get 1,000 pediatric cancer patients yearly!! UCLA has a very small wing for Oncology...it's not really even a children's hospital. But CH-LA's rooms are nothing better or worse than CHOCs rooms (80% of the rooms are double rooms), but Dr. Marcio is there...which is really where the difference lies. It is a 1-1/2 to 2 hour drive from our apartment! The traffic is insane to say the least. CH-LA is also not in the best neighborhood either. Dr. Marcio said that he has no problems consulting with me or his current Docs (to try and avoid transferring hospitals), but since CHOCs new revelation is to transfer him to UCLA with a liver transplant, it sounds like he may be going to a new hospital anyway. UCLA is farther than CH-LA. Although we've never driven it, it looks like a 2 to 2-1/2 hour drive.

Moving our family again to be closer to the hospital seems insanely stressful. Plus ripping Liam out of the Preschool that he's getting use to, seems cruel. This is the option we've been toying with:

~Luke go down to CH-LA Monday through Friday and work from the hospital (or take medical leave)
~Liam and I stay in Rancho Santa Margarita and do all the usual things we've been doing (paying bills, carting Liam around, normal stuff, etc)
~Luke come home on the weekend to be with Liam and I

That way one of us would be with both of our kids most of the time. Right now we're lucky if we're at CHOC 2 hours of the day. The internet connection at CHOC is terrible for Luke to work at. He has to hack the system every time...I'm sure they'll eventually catch on, but he avoids working from there unless he has to. Liam's preschool has still told me that he needs to stay only for 4 hours in the morning (from potty training, to adjusting to the new place...he hit his teacher today if you believe that one). Eventhough he really likes going to school, he's not ready for a full 12 plus hour day there. This makes things interesting as I really can't take Liam with me to the hospital for long periods of time. I have to think of Liam too, which is why we thought getting the best doctor for Declan would be the best for him, and staying in Rancho Santa Margarita for Liam would be the best for the other little one at home.

All of this is thrown out the window if his AFP levels come down after the third round. We have a few weeks to "wait and see" what will happen with those levels before the transplant idea comes into fruition.

On a lighter note, Declan was featured in the newspaper in WI! If you'd like to check out the article, please visit:

http://www.unifiednewsgroup.com/news_detail.cfm?storyID=418

Also, the Declan Benefit website (DeclanBenefit.com) now has Paypal available to those who are out-of-towners. Of course nothing is better than your prayers, but a financial donation would help quite a bit, if you so felt moved.

Thank you for all of your prayers and thoughts. The end goal of all of this needs to be Declan's remission and cure. However we get there, I will do whatever I have to or go wherever I need to. All parent's would, to save the life of their child. Jesus did that for Declan on the cross, which was the ultimate sacrifice of love.

Attached is a pic from today. Enjoy and God bless!

Love,
Christy, Luke, Liam, and Declan

Dreaming of the day without chemo

Declan's 3rd Round and Post Round Ideas

A new week begins, along with fresh ideas of Declan's care.

The attending physician today mentioned that they want to begin the 3rd round sometime this or next week, depending on how he's doing. Right now, all that is ailing him is his eating, which we think is due to mucisitis (mouth, throat, and general GI soars). Their ideas have apparently changed in regards to his AFP levels. Their thought is that if his AFP levels continue to rise, even after the 3rd round, other alternatives besides chemo need to be explored. Depending on his liver condition post-round-3, their thought is to do some kind of liver transplant, to avoid the tumor from metastasizing (which would be considered stage 4 by that point). Once it metastasizes, the chance of survival (of that specific tumor) drops down significantly (28% survival rate). The key is to keep it in the liver and destroy it, without destroying him.

So Declan's got a few more weeks of chemo-trials before his whole world is flipped upside down again. In the meantime, I've been in contact with Dr. Marcio in his thoughts, and will call him again on Monday. It's nice that he's open to our calls. So in my call, my questions are 1) what's causing his rise in AFP, 2) his thoughts on an ND consult. So hopefully I'll have some light shed on the issue.

In the mean time, a few more pics are here for your enjoyment. Liam had fun today with his cousins, playing at the mall. Also, you can now watch a video of Declan by clicking on this link: http://www.youtube.com/watch?v=obsyMecB6Ic. Enjoy and take care!

Love,
Christy, Luke, Liam, and Declan

Joy (Liam and Declan's cousin) is such a camera ham!

Liam looks a little anxious about the roo, but he was totally excited to be with his cousins all day (Trinity and Joy)

Declan in sweet, quiet bliss that he is not at the mall

Declan's MRI and Results

Hallelujah!

Declan finally had his MRI done this morning!!! After 4 tries and a lot of frustration, it is finished! His intubation and anesthesia when well. He was crabby all morning from being NPO, probably cause the boy's thinking...NOT AGAIN! But he went to sleep without any problems and woke up hungry.

After his MRI, he needed a blood transfusion. But on a great note, his Neutraphils are up to 100, and he hasn't had a fever since this morning. He was having trouble eating for me, and I think thew up everything I tried giving him, but luckily his G-tube takes care of the rest. Overall it was a good day for Declan.

Then we heard the results from the MRI. The resident came over to Luke and said the MRI was clear! They did one from head to toe, and nothing showed up as far as metastasis goes! His ankle looked fine! But just to triple check, they are redoing the bone scan just to make sure it was a fluke. I'm not sure when that's scheduled. But nothing has explained why his AFP levels are still on the rise. But at least they can say it's not from another tumor! :)

So to say the least, we are thrilled with the news! It's the best news we've heard in a long time in Declan's health!

Speaking of great news, the Declan Benefit is growing and growing. I hear they are adding Paypal to the website, and have gotten Brett Farve to sign a football for the silent auction! HOW COOL IS THAT!!! Whoever managed that one...dude, you rock!! :) Thanks so much for all of your hard work with the benefit!!

In other fundraising news, my parent's garage sale is tomorrow. Attached is a flyer I made. I hope you can make it (for those who are local, of course!). My parent's have been working so hard on it! Thanks SO much to them!!

Also today, a half-page article came out in the Oregon Observer about Declan and his struggles with BWS and cancer. If you get a chance, pick one up and see the cutest little 4 month old around! :) In hearing my dad read it over the phone, it's hard to believe we've been through so much in just 4 short months!

Well, a big thanks to you for your love and prayers. Today's was a biggie!! A lot of bitten nails, but God answered our prayers and got us through it! My camera is supposed to arrive tomorrow, so hopefully I'll have some new pics of my Super-D. Thanks again!

Love,
Christy, Luke, Liam, and Declan

Liam and his obsession with balls/globes and wagons

Family picture time

My two pride and joys

That Liam makes me laugh

Daddy's not making funny noises like my brother

Our new apartment (ours is at the bottom right corner)

Third time is NOT a charm for Declan

This morning was the third attempt at Declan's MRI. Well, it was delayed...AGAIN. But it was not the hospital's fault, so I can't blame them this time around. Declan's potassium levels were too low today to put him under. The boy had been NPO for 6 hours when they told me. It would have been nice to know sooner, but Declan was so good...you'd never know that he had gone a while without food for the third time. He is such a sweet thing. I hate to have him NPO for a fourth time now, but unfortunately that's the cards we've been dealt. So anyway, it is pushed off for tomorrow morning at 7:30am.

Speaking of low numbers, Declan's Neutraphls were 15 today. Hopefully this will be the lowest it gets. But I have a feeling it may not be since he spiked a fever by the end of the day (if it's not one thing, it's another). I'm not sure if that will delay the MRI even more. So far they've said no, but I can't imagine if he's still feverish that they'd do one. But he's on an antibiotic now and they've taken cultures for a blood infection, so hopefully it's just a teeny bug that will soon pass. We pray that it will!!

So a short (and not so sweet) update on my cutie-pie. Hopefully tomorrow will be a new and better day. Thanks again for keeping us in your thoughts and prayers! Lots of love!

Love,
Christy, Luke, Liam, and Declan

Oops, they did it again...my poor Declan

Hello again!

This morning was the MRI that was rescheduled from the horrible incident that occurred last week (which was actually Monday, not Friday...sorry, I'm losing track of the days). Anyway, he was scheduled for a 9am MRI. I came in around 7am after dropping off Liam at school at 6:30am (which he was really amused about). Things started going fabulously. They were on time, and we actually left 3 minutes early to go down to the MRI room. Then the disasters began to happen. The anesthesiologist called and said that he'd be "a few minutes late...ten tops". A few minutes turned into 45. Then when he finally arrived, he looked at him and said "he's got a big tongue! We can't intubate him unless we're in the OR!" It was like I had De ja vu from last Monday!! I then thought "YEA, that's why he didn't get one last week...HELLO!! Can anyone read in this hospital?!? Or at least come up beforehand to see him and/or ask us questions about the procedure?!?" By this point he had been NPO (without food) for over 7 hours from the delays. The anesthesiologist said (and I agreed) that it was too risky to not intubate him for the 2 hours that he'd be out. He tried to get an opening in the OR, but found that it was full until a possibility of a cancellation at the end of the day. It was like I had this horrible nightmare again! I said "NO WAY!" You can reschedule. I'm not going to let him go for 13 hours or so like last week, when he got so mad that he ended up on his tummy without anyone noticing. So, it is rescheduled for tomorrow at 4pm! :)

I called the Director since she told me to call with any more problems with the staff or procedures. I then began to explain the day's events. She agreed with me in that this should not have happened the first time, let alone twice. The boy still hasn't had an MRI done! It has now been delayed for over a week because of the hospital's incompetent procedures and miscommunication amongst the staff. All of this could have been avoided if they had just looked in the chart beforehand (and not 5 seconds before entering the room) or come up to see him the day before. So, she escalated my irritation to the Vice President of the hospital and said that she was very sorry for it happening again.

After that, the computer began to steam as we vigilantly started looking for a new hospital. We visited one already tonight (City of Hope) which is solely a cancer hospital, not a children's hospital like CHOC. Although I truly loved the facility (it's on a gorgeous park-like 110 acres) with their new pediatric building, it is about an hour and a half away! Also there is no Ronald McDonald House anywhere near for visitors to stay, which is a huge bummer. We also didn't have a chance to speak with the Oncology Nurse to ask about the docs knowledge working with BWS or his type of cancer. So that's on my to-do list tomorrow.

The other hospital high on our list of ones to see is CH-LA, where the famous hepatoblastoma doc resides. We drove by tonight on our way home. It is on Sunset Blvd in a crazy part of LA. Very busy, with nowhere to park. It is a seriously huge building, and I can see us getting lost in the shuffle. But, I have to give it a shot, so we're going to try and get a tour in this week also. They never returned any of our calls today about scheduling a tour which would give me some indication on their customer service. But hey, if their is the best place to help Declan, my comfort is happily thrown out the window. :) Luckily they do have a Ronald McDonald House nearby, which could help us logistically work out how we'll manage one of our boy's an hour away!

Today Declan is doing well. His counts are getting low (his Neutraphls are around 300...normal range is above 1,000), but he looks great, is smiling and happy. What more could you want?!? :)

Liam, however, didn't have the best day today and was sent to the Director's office because of his inability to nap...they were serious! It's like "preschool boot camp" man! So he was exiled in her office until I came to pick him up. I'm not sure if going their was the best choice...hopefully the director was just having a bad day. She seems so nice at the time and very considerate about our situation. I'm not sure what changed between yesterday and today?!? Either way, I did tell them that he hasn't napped since he was 2. They must have thought I was joking?!?

Well, on a much, much, much better note I was completely honored and flabbergasted by our church in Madison's outreach of love and care. They have so kindly put a benefit together to raise money for Declan's medical expenses. I couldn't believe it! I was so humbled and almost embarrassed by the amount of publicity this thing is getting! And it keeps growing from what I hear! They have apparently set a goal of raising $5,000 which will be supplemented, dollar for dollar, by the East Dane Chapter of Thrivent Financial for Lutherans.

You can check it out in its early stages right now at DeclanBenefit.com.

They are doing all kinds of things that day to help raise some cash, but if you'd like to stop by for just some fun and entertainment, I know they'd love to have you!! I'm really hoping to fly up for it, but you know how Declan is the ultimate authority on that one!!

Well, it's late again and I haven't had a decent night's sleep since we moved here!! :) Thanks again for the insane outpour of love and prayers. God really continues to guide us though it! Our nights may be long and trying, our sleep feverish and fitful, our bodies faint, and our hearts anxious, but no matter what the trails of the night may be - "when I awake, I am still with thee!" And to be with Christ - what greater comfort could there be! :)

Lots of Love Back!!
Christy, Luke, Liam, and Super-D

Declan's Diary

Hello again!

I'm so sorry it's taken me this long to update you on Declan's latest. So much has been going on!

The last time I emailed Declan was found in his bed on his tummy with a pillow on his back, screaming, his leads off, and the machine unplugged from the wall. It was reported to the police who started an investigation immediately. The police came to our apartment at 4am the next morning to question us. I was not at the hospital all day the incident occurred (I was running arrands, etc...but I knew Luke would be there from about 5am until his lunch hour), and Luke was (from what I've heard) the last one in his room at 11:30am. The nurse found him this way at 2:55pm which begs the question "why was no one in his room for over 3 hours?!?" Anyway, before I go off on a tangent about that, I'll continue the story. When the police arrived, they had finished questioning a bunch of the nurses and staff who were on that day, which brought them to Luke being their prime suspect! LUKE?!? How crazy is that?!? The man wouldn't harm a gnat, much less his own child, which he just proved by moving halfway across the county to help. So they grilled him for about 2 hours with 2 detectives. Also they took us into separate rooms and I got to be questioned by social services who was making sure that Luke wasn't beating us or anything...I laughed. It was like something out of CSI. Like, "I must be dreaming, cause why on earth would I be talking at 4am". Anyway, after that fiasco, Detective Miller gave me his card and told me to call with any other insights, questions, or updates. I hadn't heard anything since that morning (which was last Friday), so I called today. He questioned me and asked me what I was doing that day. I have receipts and such to prove that I wasn't anywhere near the hospital, but he was also asking what Luke did too from my perspective. After telling him the events of the day, he mentioned that he wasn't done questioning some of the hospital staff. He said that when he was done, that all of us will meet and go over what he has collected. But so far, the room that Declan was in (and has since been moved from...go figure) was in the corner which was difficult to see from the surveillance cameras. They can't really tell who was in and out of his room that day. To make matters worse, when Luke came in at 5am (for the scheduled MRI at 7am) no one (even security) was down at the main desk to sign him in and come up. So he called the HemOc floor who came down and got him...they have no record of him coming in that day! Needless to say, they have tightened their procedures a bit (I'm sure they can smell a lawsuit coming!).

But before this whole mess happened, a family meeting was scheduled to go over his plan, meet the whole staff, and get any input from other sources (ie an ND consult). Well, this was fresh after Declan's incident. So, there were about 9 people in the room from the hospital to either cater to our needs and/or intimidate us from not bringing it up. Either way, I was ready! My dad, Luke, and I walked into the room and started talking about his plan (first thing's first). Apparently they think that Declan is only about a stage 1/stage 2 at the most (UW thought stage 2/possibly stage 3), which I don't understand since UW was the one who actually did the surgery and the tumor testing...wouldn't they know better than anyone else?? The doc has decided to reduce his rounds down to 4 (instead of 6) and cut out some of the chemo drugs...but not the evil Cisplatin! They cannot explain why his AFP levels are still high, but think it is because all BWS kids have elevated AFP and that the best marker for tumors is not AFP testing, but scans. Since the AFP test that was done right after we got to CA, yielded over 46,000 (and then retaken to make sure it was correct), a bone scan was ordered to rule out any kinds of possible metastases (more on that later) after a clear CAT scan was done. An MRI is the best indicator, but of course that didn't happen thanks to the above-mentioned incident. She also said that an ND would be highly advised-against during chemo. Now before I got to CA, I asked his primary who he would be assigned to (Dr. Torno) if an ND consult was okay. Well, his primary doc got changed on us (now, Dr. Shen)! And the new one is saying no. A big reason why we moved here was to find an ND who would be willing to take on Declan's case! Anyway, then the incident came up!! Oh boy....I was not expecting the reaction that I had in that room. From the amount of people staring at us, to the irritating "can I do ANYTHING...please don't sue us...ANYTHING to help you....PLEASE!!", I was mad! I felt like a hornet who had been bottled and shook for a while, and was now set free to do what I willed. The Irish in me took over and I started going off on how horribly the situation was handled. Everytime I would ask why this or that was done, I heard "well that's a good question, we'll look into it". I must have heard that about 15 times.

It is truly sad to see progress being made in his care (better security, a nurse with him 24/7, my questions finally being answered, calls returned...the list goes on) after our child has to endure what he did! So with that being said, we are looking for other alternatives in hospitals. Luckily we are in a big city where we get a choice! Our first choice was Children's Hospital of LA before (but we decided on CHOC since the hepatoblastoma expert would be in close contact...though not his patient, and that we wouldn't have to drive as far), so we may seriously reconsider going there...but going from one hospital to the next is difficult on him and the learning curve to what Declan likes and needs, does take some time. But in regards to the change in his chemo schedule, I questioned why she is changing the chemo road map from UW and Dr. Malogolowkin's suggestions from before (Dr. Diamond consulted with him multiple times to figure out his care before). The hepatoblastoma expert, Dr. Marcio Malogolowkin, (from Dr. Shen's perspective) "isn't always right either, and that Declan is my patient, not his". Oh okay....we'll see about that! One day, we'll get it right, and send him to a hospital where they don't neglect him (btw-Megan (his RN from Madison)....this doesn't mean you...UW never neglected him...if anything, he got so spoiled by you!!)!

Soon after the meeting a bone scan was taken. And WHAT DO YOU KNOW, they found a growth of cells that they didn't like to see near his left ankle. It's like this constant beating never stops! They don't think it is another tumor, but they can't say that its not either (they are very careful on their choice of words)! All they keep telling me is that they don't like what they see, and a CAT scan was ordered to further investigate it. Well, the CAT scan didn't show much more. So, an MRI is finally ordered for tomorrow morning. I am going in this time (thanks to Liam just starting preschool today...like I said, a lot going on here)! He will go to the OR to be intubated and put out with general anesthesia. At the same time, the bone scan will be redone. And, a PET scan is also ordered for later this week (in which he will also need to be intubated and given general anesthesia for). But of course this can't be done at the same time as the MRI since the PET scan requires no sugars of any kind for 4 hours. Going without food for the MRI is going to be tough on his blood sugar as it is, so no sugars via IV on top of that would be asking too much. So, if the boy doesn't end up glowing from all the radiation this week, I'll be surprised. But if they do find another tumor that has metastasized, it will explain why his AFP has doubled and continued to be high for a while now (which the docs here couldn't explain...even with him having a falsely high AFP from his BWS). I know that some things just can't be explained, that BWS still has a lot of unknowns since it is such a new syndrome, and that I am definitely not looking for something "just for the fun of it". One on these days, I want to just hide from all of this...find no trouble...and watch my kids play in a park. Ahhh...what a sweet, sweet day that will be!

Declan's blood sugars haven't been the best as of late. They are trying to ween him on the steroid, hydrocortisone, and add the hair-growing Diazoxide back to get him off. But he had a 38 blood sugar this morning, so I don't know that it is a good idea...38 isn't a borderline number-it's a low one.

Also his Neutraphls have dipped down again (to be expected...that's what chemo does). But hopefully this round he won't get as sick or have any of the problems he had with the first. We're praying that he doesn't anyway!

Well like I said earlier, Liam started at his new preschool today. He didn't have the complete and utter torture he seemed to have the first few weeks at his last school in Fitchburg. But it was only the first day...the worst of it seems to be on day 2. But so far so good. The facility is super-nice. The classroom is huge, and there are at least 2 teachers in his room as opposed to only 1 before (with about the same number of kids!). He is also starting to potty-train (I honestly never thought the day would come!). I almost cried when I saw him go (cheap thrills...but I take 'em when I can!). He started to cry like he did something wrong after seeing my reaction, but after he realized that they were tears of joy...he was happy and went again! :) But he is doing so well, and hasn't really been in diapers since Friday or so (which is yet another thing to add to our chaos). The school only puts diapers on him when he "naps"...yea right...they boy hasn't napped since he was 2. But I am so proud of him, and haven't been this ecstatic since Declan was born.

Then there comes the issue with our ever-volatile insurance and medical assistance. We still don't have any medical assistance as of yet. The process (like all things with government workers) seems to go as fast as tar dripping down a sidewalk. But one great piece of news is that we hadn't heard for a while, was that our insurance premiums (although switching companies) have been cut into a third from Luke's work kicking in more for their employees benefits!! That was a good day!! We again cried in joy. Only by the grace of God were we were still in the 30-day window of deciding between plans, which means we could switch to the decent plan that yielded an unlimited lifetime max for Declan (his old plan had a 1 million dollar max which he was quickly getting close to). But that plan was almost $1000 a month...we couldn't afford it until now!! It ends up being cheaper than his old plan, just over $300, with a million times better coverage and benefits. So, even if Medi-Cal doesn't come through, the deductibles are at least do-able ($30,000 with a million dollar roof VERSUS $18,000 with an unlimited roof - that's the key). It's amazing how cheap and $18,000 can be used in the same sentence with fervor.

Well, sorry for the insanely-long update. So much is going on, and I haven't emailed in a few days...so it can add up. I will really try to email sooner. We are still unpacking, but it's much easier to get around and find things now. It's funny, cause the only thing that I've found that really broke during our move, was the car's bumper...weird!! :) Oh well... One day, I really should sit down and put these emails together for Declan to read one day. It's like a real-life action flick!

I know I say this a lot in my emails, but we really do appreciate your love, prayers, and thoughts. We have been so encouraged by them. I miss so much of you, but your support and love has really kept us above water. Thank you for your kind words, actions, and most important prayers. They have meant more to us than you know!!

Love,
Christy, Luke, Liam, and Declan

PS - Sorry...no pictures again. When my purse (and camera) was stolen, all of our pictures went with it. So I don't have any new ones since before we moved! I bought a new camera online, but haven't gotten it yet. Hopefully I'll have some updated ones soon!

Declan's Police Report

You might be asking yourself as I used to do quite often...."what now"...

I keep asking the Lord why so many crazy things have happened to us. Our life has turned into a soap opera it seems! Interestingly enough, the newspaper has called about doing a story on Declan, but I really wonder if there would be enough sentences to fill a story in all that has happened in his short life. But I'll report to you with my latest news...

Yesterday, Declan was scheduled for a 7am MRI. Since it was supposed to be done on Thursday, and every day since, they tried to "squeeze him in". Well, they finally decided to put him in the books for Monday. Luke then got up at 4am, so he could get to the hospital by 5am to start work for the day in the family room. They required at least one parent to be there to sign consent for him to be put out with general anesthesia and intubated. Well, 7am comes and goes...no word... Meanwhile Declan has been fasting for his procedure and is getting mighty cranky. Hours and hours come and go, and no word from the anesthesiologist. Declan kept getting bumped with emergency MRIs. 11:30 comes around, and by this point Declan is done playing around by "asking nicely" for his food. It is also the time for Luke's lunch hour, and I had made an appointment for our car to be looked at so I needed him home so I could take the car in (I'll explain later). So Luke had to leave and told the nurse that they'd have to do a phone consent whenever the anesthesiologist decided to show up. The nurse didn't call us until 4pm!!! 4pm!!! The poor boy hadn't eaten all day. They finally took him down to the MRI room, and the anesthesiologist looked at him and said...he's got a big tongue!! Like this is some news to him! If the man had stopped by his room beforehand he would have known that. Anyway, he said he didn't feel comfortable giving him general anesthesia and intubation without being in the OR incase something were to happen. Of course the OR wasn't available then, and holding him off any longer would mean their hearing loss from his screaming. So they just decided to get a CAT scan instead.

Meanwhile I had to take our car in to be fixed. The bumper had been ripped off while trying to take the car off the ramp from towing it behind the moving truck. Well driving without a bumper is illegal and the soonest I could get in was Monday afternoon. I got the estimate (which will take at least 4 days to fix) will be over $1000! I didn't know a bumper could cost so much!

The CAT scan came back well. His lungs and renal organs were looked at. His kidneys looked great they said! Yea! But they are planning to do a bone scan soon since his AFP levels are still twice than they were last time. They want to rule out all possible metastases. The noticed from Xrays that his bones look weak which they think is just due to the amount of steroids he's been on for so long. They didn't think there was a link between the steroids and bone cancer, but a metastases could happen from the liver (which is rare...but what else do we seem to do!).

Also good news! It appears that his glucose is behaving like it should, even with all the eating...no eating mess that's been going on lately. So they are trying to slowly get him off steroids. Very slowly. It'll be nice not having to split and crush one of those pills!! It's such a pain.

He's doing well being off chemo for a few days now. His neutraphls are awesome, and knock on wood, this rounds appears to be a million times better on him than the first. But only time will tell.

Our unpacking is moving at a turtles pace with everything going on. All the necessities are unpacked...but the unorderly chaos of our new place is driving the organizing part of me a bit wacky. But there are bigger things in life to be more concerned about, so a lot of times I let it go. It's amazing what my threshold for chaos has been.

Speaking of which, today we got the biggest hit we've had for a while. Apparently yesterday afternoon Declan was found in his crib out of his Boppy Pillow, upside down, his leads off and unplugged, with a pillow over his head. He was all red, coughing, struggling for breath, low O2 saturation, and bubbling at the mouth! The docs said there was no way he could have physically done that himself, which means someone else was in his room. They don't know who it was. Today a bunch of administrators from the hospital and his primary doc (who I finally got to meet today) came in and said a police investigation has been started. The entire nursing and doc staff is being questioned (as are we), and security is patrolling the hospital 24/7. Multiple police are on each floor, and a ton by the entrance. This has of course, freaked us out completely. I never thought to be concerned about security at a hospital. But I sure am now! There's a nurse that has to be in his room 24/7, and he got moved to an isolation room (without any roommates). Never in a million years would I think something like that could happen. It's hard to believe anyone out there in the world could do something to a baby with cancer...that's just sick and twisted. But I wonder if there's a link between my purse being stolen a few days ago and this new crises...

Well, we appreciate your prayers and thoughts. Luckily Declan appears to be doing okay since his incident yesterday. He has been throwing up, coughing, and wheezing, and tomorrow he'll be getting a chest Xray to make sure his lungs look good. I can't wait to put all of this insanity behind us. I had to stop asking "what now". It seems like a lifetime of years has accumulated these past few months (with evidence by Luke's hair turning gray), and with Declan turning 4 months old soon, I realize it's only been a short time. Wow! Hard to believe! Thank you again for all of your encouragement and love!! It has meant so much to us!

Love,
Christy, Luke, Liam, and Declan

The Eagle Has Landed!

Well we've had one insanely eventful week...so unlike us you know! I'll first start off with the flight.

My dad drove Declan, my mom, and I to Midway Airport on Monday (it's hard to believe that was 6 days ago!). Pretty uneventful...Declan slept most of the way. One hurdle down... We then proceeded to get our tickets and enter the dragon's layer of Security Checks. I was totally ready with doctor's notes, IDs, medical history info, etc. Well, surprise surprise...they flagged me and I got a special check with all of our bags looked at with a fine tooth comb. Declan and I got frisked (he couldn't go through the metal detector I guess with the continuous feeding pump on). The Security guys were super nice and friendly, and wished us their best...it went smooth as butter! Two hurdles down! I started to feel pretty confident as Declan was his happy-self...a content little clam with his pacifier and blanket. We were even almost 2 hours early to the gate!! So mom and I changed his diaper and started to wait for our plane to arrive. In the mean time, I administered a slew of his meds and noticed that I started having problems getting the last one in! It wouldn't budge!! I tried harder...still nothing...then I gave it a real push....and then I got a shower of magnesium. Every time I tried to force it in, it came right back out and into my face. I started to panic as I remembered his blood sugar problems that he had not that long ago. Our plane was about to board in 15 minutes by this time! So I called his UW Docs in Madison and got his nurse that discharged him and told me to put Coke in his line! COKE!! I thought she was kidding at first. So my mom ran and popped one open and I put it into a syringe and tried to force that in...still nothing. The nurse said to keep giving his bottles by mouth and to keep his emergency needles (for low blood sugar) and his blood sugar monitor handy incase he looked like he may be having a seizure or other side effects from his hypoglycemia. So I plugged that bottle in his mouth and he began to eat...and eat....and eat...and eat! He ate practically the whole time, just like his continuous feeds would have! He took a few breaks and naps here and there, but he was WAY better than I thought he would be. The long flight really ended up being a pretty good one, minus the clogged G-tube. So we landed and went straight to the hospital. CHOC got us into a room and we crashed into bed around 4am CST at our new home.

The next day, all the usual new patient things were done, as was a new AFP test (which detects cancer cells). His AFP was again around 46,000...right around the same number it was a few weeks ago, which we thought was a fluke!! Also, the nurses tried and tired to no avail to get his G-tube working. They ended up replacing it on Thursday with a temporary one that he'll have for a few weeks until he grows into the new one which is bigger (they thought it would be better to wait since he'll be growing anyway). He stayed awake while they changed it and did very well with the new tube. But because of the AFP and there need to get a baseline image here, they are having him get an MRI done tomorrow. He will be given general anesthesia and intubated tomorrow morning during the procedure.

Declan also started Chemo on Thursday. He got all the same drugs as before, but half of the Cisplain (the nasty one that gave him all the problems last time). He's doing so good right now. His Neutraphls are wonderful so far, but I can't get too cocky as he had a horrible delayed reaction. So we're not out of the woods yet. Just pray he continues on the path that he's on now!

I'm am pretty happy with the hospital here. The doctors are outstanding...when you can tackle them down! Most of them actually know what Beckwith-Weidemann Syndrome is!! It's nice not having to tutor them!! I didn't realize that Dr. Beckwith actually lives around here and used to give pretty frequent visits to CHOC about BWS!! It's reassuring that he's in good hands. It does have its drawbacks though (as every place does). I loved our nurses in Madison...ours here seem to have a higher patient to nurse ratio, and rely heavily on volunteers and aids to do a lot of the baby stuff (holding, feeding, changing, etc). I wouldn't mind, but his usual nurse has been giving us guilt trips for not being at the hospital more, and saying that he's been crying because I'm not there! Also, the hospital has a really backwards way for Wi-Fi. They basically pass out their own laptops for you to check out and use during the day...no using your own, which REALLY stinks for Luke. He can't work at the hospital! So what he ended up doing is going to a family room and unplugging their CAT5 cable and hacking into the network so he could work. Otherwise he'd never be able to go see him!

Luke's dad brought Liam home this week too. It's important that Liam feels at home too, which is why we've been splitting our time between the hospital, home to unpack, and time with Liam so he can get his barrings. He's been doing pretty well here, but is in complete heaven now that he lives near his cousins! All I hear is "Trinity and Joy? Trinity and Joy?" It's a broken record! It's good to be loved! :)

So our apartment is starting to resemble that of a dwelling place! For a while you couldn't walk through the sea of boxes and misplaced furniture. Luke's dad really helped out this week with unpacking and moving in. And today was one of those days of another Target run (we live near one) for supplies. I grabbed a cart, put my purse in it, and put Liam in it as I headed over to the store. I spotted a Payless Shoe Source and though "Liam needs new sandals", lets go there and shouted across the parking lot that we should go their first. So I went in ahead of Luke. Luke then parked the cart outside of the store, pulled Liam out, and proceeded into Payless....WITHOUT my purse. By the time I realized that Luke hadn't grabbed it, the purse was gone! Panic again!!! Twice in one week...I was so lucky! :) We looked everywhere...no purse. Luckily my phone was in my pocket, which was the thing of most value. We ran over to the car to make sure someone didn't take off with it (my keys were in there), and called the police. We filed a report, and started calling credit card companies. All 4 of our social security cards were in there, not to mention all of our credit cards, licenses, and all of my keys! But, I didn't have a lot of cash (about $15), and my bag was from the clearance section at Walmart...so not a lot to steal except our digital camera which I use to take those cute mug shots of Declan. My brother and Anne came up from San Diego for consolation and help (they and my parents went down their for a mini vacation), and in between our Taco Bell dinner feast my phone rang! Somebody found my purse and gave me their address where I could pick it up. I could barely understand them, but made it out and gave them $40 for giving it back. The only casualty was my camera...but I got my keys and my social security cards back. Luckily there was nothing in there with our new address (thankfully I had just taken out our new checkbook to pay bills), and the only thing with my phone number in there was an emergency medical card when I was having bad Myasthenia Gravis problems about 10 months ago! I never thought that would ever be used! :)

So needless to say, our week has been utter craziness! One of these days, it will slow down....it has to!! :) I don't think it could go much faster than it has gone! :) But we continue to be blessed with Declan's good health so far, and our new home. It is just GORGEOUS out here! You can't beat the weather or the scenery! Man, I can see why so many people flock to this city! But our little 1 bedroom with a Den comes at a price...a pretty steap one at that (about $1,600 a month) which would drive out most of the sane ones...oh well...you know us!

Well, I'm so emotionally beat from this day and week! I'm SOOOOO so sorry for not emailing sooner. Since things are at least resembling an apartment, I can respond quicker I hope. I'll at least keep you updated on Declan's procedure tomorrow. Thanks again for thinking of us and keeping us in your prayers! Declan made it safe and sound, even with the bumps in the road! I can't say that his mom and dad didn't get away without a bruise or scrape, but at least my boys are doing well at their new home. Hopefully Declan will be able to come to his real home and enjoy the great outdoors. Sunshine and poolsides seem like good therapy to me! :) Thanks again!

Love,
Christy, Luke, Liam, and Declan