Happy New Year

Wishing all our friends and family across the globe a Happy, Healthy New Year! We hope that 2009 brings you all joy, love and prosperity. Much love -

Michele, Patricia, Ellie & Max

Mr. Max in the Media

Today I received an e-mail from a friend at the Foundation at Phoenix Children's, a few months ago they ran a story about Max and Max's Market in their quarterly magazine, "Hopes and Dreams". They now have the story in electronic form on their website, I thought I would share it with everyone. Click on this link and be sure to go to page 15, http://www.phoenixchildrens.com/ways-of-giving/hopes-and-dreams/h_and_d_anniv.pdf

Remember if you know anyone who would like to help Max help his friends at PCH just let us know!

Holiday Wrap-up

This year’s Christmas had a very late, slow start at the Marangella household. We didn’t get a tree until late last weekend (Max did the picking this year and I think someone forgot to tell him that we don’t live at Rockefeller Center, I’ll try to post a photo of this monster tree later) and our decorating was half-hearted and complicated by the fact that we couldn’t find a large part of our Christmas decorations in the garage. Due to the mammoth size of the tree I made so many trips to the store for lights I was afraid my photo would soon be posted at all of our local Targets with the description, “Beware of insane women still looking for Christmas lights on Christmas Eve.” This year everything seemed so last minute and rushed I’m not sure it ever really felt like Christmas. Our Christmases have always been loud, crowded affairs so this year’s small-scaled, quiet holiday was unusual. We did have a few visits from friends. Tory (of Room for Joy fame) and our friends from Central Christian Church stopped by with some presents and holiday treats to help us celebrate in style and Wendy (our favorite Child-Life Specialist from Phoenix Children’s) and her daughter Sydney joined us for Christmas lunch so we did have a bit of a social life which is a good thing because the rest of our weekend revolved mostly around doing absolutely nothing! In the end it was a good thing that we hadn’t planned on doing anything special because as is typical during any holiday with children Max has been down with a nasty cold since Friday. It seems that either Ellie or Max or both manage to get sick during any given school break. So far we have contained the outbreak to one patient – fingers crossed it remains that way!

Have a great week all!

Have Yourself a Merry Little Christmas

Christmas morning has always been a day of reflection for me, I find myself remembering Christmases past. The last one I spent with my Grandmother, my first one with Michele, my children's first Christmas...the list goes on. Some of the memories are bittersweet although most are just happy. In many ways the song "Have Yourself a Merry Little Christmas" has been my favorite carol since my Uncle with whom I was very close used to sing it to me while dancing me around the room, me with my feet on his shoes. As an adult I listen to the song with new ears, I think about our past and try to look forward to our future when our "troubles will be far away" -- at least we can hope!

Wishing you all a merry little Christmas!

I will fight no more forever….

If only this statement were true. Since returning from Baltimore I have spent the majority of my time fighting with our insurance companies about the new medications and dosages that the doctors at Hopkins prescribed for Max. Today was a prime example, I was at it by 6am our time so that I could talk with the East Coast before their day really started. I went on to spend the rest of the day with my cell phone surgically attached to my ear. In fact my phone got such a workout today that it stopped working. I wonder if United Healthcare has a benefit for cell phones broken at their expense…..

Now I have to admit that the good news is that Max has two medical insurances, our private plan and the state plan for chronically ill children that can both cover his medications. The bad news is that Max has two medical insurances that can both deny his medications. I’m sure some of you just giggled at this but there’s more truth in my description of Max’s medical coverage than you might imagine. Having two separate medical plans just gives me more people to fight with. So instead of convincing one set of Medical Directors, RN Caseworkers and Pharmacists that the doctors at Johns Hopkins (side note: this is the institution voted the #1 hospital in the US for the last decade at least) really know what they’re doing when they write prescriptions for my son I am fortunate enough to have the great pleasure of convincing two sets of these medical morons, woops I mean professionals.

I also must admit that I am not alone in my battles. My army is big, strong and afraid of me! Just kidding, I learned very early on in this process that the most important thing I could do for Max was to be really, really nice to all the nurses in his doctor’s offices. They have all known Max since birth, many cared for him when he was a tiny infant attached to a bazillion machines and they love him – heck I’m even going to venture that they like me! Because of this relationship all of these wonderful ladies take up the fight with me and while the battle is long and grueling we continued to advance in our war against the medical bureaucracy. The one thing most medical insurance professionals need to keep in mind when dealing with us is that they should never, ever give us a phone number, name, or e-mail that they don’t want us to have – we will keep it forever and haunt them until death or retirement whichever comes first. In recognition of all these wonderful doctors and nurses do for Max all year long we went around today to their offices to drop off Christmas gifts, well-deserved tokens of our gratitude for all they do for Mr. Max.

So in keeping with the spirit that this week brings to all of us as we prepare for Christmas I am making a pledge to not argue with anyone else about Max’s medications. Of course my phone is broken now so I should have no problem sticking to my word…..Have a great Tuesday!

How lucky are we?

Today I found myself thinking about how lucky we are -- now I know there are people out there who look at us with pity because our son was born with severe medical issues. Heck, it would be dishonest of me to not admit that there are times when I feel sorry for us. As is typical of a mother of a chronic kiddo I mourn what should have been, some of my dreams for my son will never come to pass yet other dreams I never knew I'd have have come true. Max has defied all the odds we have ever been given by doctors and he continues to do so every single day. So when I or anyone else looks at our situation with sadness I think we're not seeing the "whole picture." These last seven plus years have been grueling, emotionally, physically, financially, logistically, etc., etc. but they have also been rewarding. Rewarding in many senses. I really think that parenting Max has taught us many things. I have often likened it to "parenting on steroids", everything is more intense but it is also clearer. When you parent a typical child it almost becomes mechanical, you don't have to agonize over very much, it comes naturally to a parent who loves their children and wants to nurture them. With a child like Max nothing is mechanical or rote, every day brings on some new challenge. You can't always trust your instincts -- is he really sick or is it just something as boring as a cold? Did you give him all his meds (luckily Max now keeps track of his own meds and will tell you if you screw up!)? Are you doing everything you should to maximize his medical outcome? The list of questions rattling around in your head grows longer and longer....but I have grown used to all of this and I have come to appreciate it for what it is. Its Max and his miracle, nowhere was it written that we would be so lucky and so blessed to have this son who teaches so many so much. And although I would take away Max's suffering in a heartbeat if I could I know we are all better people because of Max and the journey he has taken us on.

I also believe we are very, very lucky to have met all the people we have on this journey. People we would have never known if not for Max and his story. There have been so many who have become part of our lives, supported us, listened to us and above all else have given so much to us. These people are not friends, they are family, they are an integral part of the life we have weaved with Max. We don't always remember to thank them and recognize what they do for us but we hope they know we would not have made it this far without them.

Before I close tonight I want to give a quick update on Ayah (the little girl we met in Baltimore who had a liver transplant), I have spoken to her grandmother by phone and e-mail over the last few days and we are so excited to hear that she is doing really, really well. She is starting to wake up more and more and may even have her breathing tube out by now. These kids never cease to amaze me, they overcome so much with their wills of steel!

Max and the Figthing Falcons

The day before we left for Baltimore Max's soccer team "The Fighting Falcons" held their end of the season party. It was a great send-off for Max, he had a wonderful time with his friends and there were many BIG surprises. The team presented Max with his very own Wii!! As some of the photos show Max sported an ear-to-ear smile. The team and their families also generously helped us with our travel expenses to Johns Hopkins. We are very thankful for their support and are lucky to call them our friends!

Coach Tav, I hope you don't mind that we "borrowed" some of your photos! Enjoy!

Ho, Ho, Home

After an exciting week of “globetrotting” we had a rather dull weekend. In fact, if you don’t count the 15 loads of laundry, grocery shopping, housework, homework assistance, and various other tasks, I’m pretty sure that I have accomplished absolutely nothing since returning from Baltimore. This week will be our “catch-up” week. We’ll get the kids caught up in school only to have them finish for Winter Break on Friday. I’m going to attempt to get caught up at work, especially because I’m in the midst of a huge project which has to be delivered this week. I feel exhausted already…..but the good news is if we can just get through this week we’ll all have a break for the Holidays.

It seems incredible to me that Christmas is just 11 days away. If you stopped by our house for any reason you would have no idea Santa’s arrival is upon us, there are no decorations, no Christmas tree, and certainly no presents have been purchased or plans made. I usually pride myself on my organizational skills but I must admit I’m failing miserably at the moment! I think our trip to Johns Hopkins every year just makes the Holidays seem secondary or at least secondary for us adults but definitely not secondary for the kids! This year Christmas will be exceptionally quiet at our house, last year we had both sets of grandparents here, this year no one will be making the trip out West so it’s just the four of us. Michele and I would be just as happy to skip all the preparations, festivities, etc. but we know we can’t because of the kids. So this week will also be our “catch-up” week for preparing for the Holidays. Michele will half-heartedly put up the Christmas lights without his Dad, we’ll take the kids to pick a tree for the first time without their grandfather’s assistance (no one picks a Christmas tree like my father-in-law), I’ll actually have to help lug the tree in the house and set it up because no one else will be here for me to delegate to. And God help us, I’ll have to help Michele string the lights on the tree….I wonder if divorce court is open on Christmas Eve because something tells me we’ll be needing it!

Have a great week and remember if you hear any loud cursing in Italian it's just Michele and me stringing lights......

At the Finish Line

Max’s tests, doctor appointments, pokes and prods have officially been completed. He is a very happy boy! When we finished today around lunch time we asked him how he wanted to celebrate, he could have any treat he wanted and what did he pick? A walk at the Inner Harbor (btw, it poured today and it was a cold, damp rain) and to eat fish. Off we went, Max was thrilled to case seagulls in the rain and eat calamari. After the week he had he truly deserved it. Michele and I deserved the nap we took when we got back to the house….

We spoke to Dr. Vricella, Max’s cardiac surgeon, today. He was pleased with what he saw on the MRI. He thought Max’s aortic valve looks better than he expected it to, in fact he thought it may even look better than it did last year. His only suggestion was to double his Cozaar dose which Dr. Dietz had already done on Tuesday so he was happy with that. He told us to have a repeat echo in 4 – 6 months and send it to him for review. So there you have it, “Arrivederci Johns Hopkins!”

A quick update to last night’s post, they found a liver for the little girl and she’s in the OR right now. The liver looked good and came from a perfect match so we are all praying for success. The little boy with the brain tumor has been moved to “the floor”, in the medical world we consider that a step towards the front door! Thoughts and prayers do really work!

Thanks for checking in…..we are now officially on the Baltimore minus 12 months track!

Musings of an exhausted mother....

I feel that I need to put a disclaimer on tonight’s entry. It wanes a bit on the melancholy but it is something I feel I need to write about if for no other reason than to save my own sanity. Although today was easy for us -- Max had just a few labs and not much else that was particularly exciting -- it was also a very emotional day. One of the families we have met this year has a five year old daughter who had a liver transplant yesterday; the liver failed overnight and if another one doesn’t become available in the next 72 hours there are few if any options left for them. It’s heartbreaking to watch parents face the decisions they must make in such situations. During this stay I have noticed that the children here are much more critically ill than they have been in past stays. I cannot remember another time when a child staying at Children’s House passed away while we were here, this year it is very possible that two may pass before we leave. Now I must admit this house isn’t exactly a party place, the families here are facing serious illnesses, but this year it is particularly sad. We families form a certain bond during our time here, we all know each others stories, what our kids are going through, and we support one another as best we can. We may never see each other again but for the fleeting time we share this space we form a sort of club, we don’t have a secret handshake or codeword that identifies us as members of this club, we don’t need one because we share something more important, we share the same battle. We are all here to give our children their best shot at a healthy life or at least the best life they can have. Many of these families have sacrificed much to get their children here, this is something we know first hand, but none of us would ever consider any other alternative. As we sat together in the kitchen tonight our theme was “no matter what happens we know we have fought the fight, we have given our kids the best there is”. I’m not sure how much comfort this will be to the parents who may loose their children this week or any other week for that matter but sometimes that’s all we have, the comfort of knowing we’re doing the best we can for our kids. On that level we are not much different from any other parent, all parents do the best they can for their kids. We just happen to be doing it in a life or death situation.

Tonight please keep the little girl who is on life support waiting for a liver and the little boy whose brain tumor is back in your thoughts and prayers. You have no idea how much that means to these families. Our children touch many lives, in some cases this is the legacy their short lives leave behind. Someone once said it is not the quantity of life but rather the quality that matters most. I believe that this is especially true of chronically ill children who live more than we will ever know.

I’ll close with a promise, I promise to never be quite so philosophical again. Starting tomorrow I’ll turn back into my usual smart a## self!

A More Productive Day

Today was productive but long -- very, very long. We started out at about 10am when we checked into the Pediatric Cardiology department for Max’s cardiac echo and appointment with the cardiac geneticist. Max is always so happy to see all his friends here. He told everyone, from the receptionist to the doctors, about what he’s been up to this last year. Of course this year’s big news was that he has been playing soccer. Dr. Dietz was happy to hear this news as exercise is important to Max’s muscle development. Max wasn’t as interested in the physiological benefits of exercise as he was with telling everyone about the many awards he has received this season. To hear Max talk you would have thought he took his team to the championship single handedly. If there is one thing that this kid doesn’t lack its ego!

On the cardiac front the news was generally positive. Max’s heart looks good, or to be more precise it looks the same as always so as they say in the business, “no news is good news.” In fact, the doctor told us he wasn’t worried about the heart valves at all -- we should be able to get a lot more mileage out of them. Thank God! The “interesting” news was that they have successfully engineered a mouse with the same gene mutation that Max has – we did get naming rights here and we’re happy to announce the arrival of “Maxi Mouse”.

Our second appointment was with Max’s GI doctor. He was pleased with Max’s growth and overall health. He did increase all of Max’s vitamin supplements which we expected due to how low his blood levels have been. The other news which we found just a little odd and a lot depressing was that as Max goes through the normal growth spurt of adolescence we should be prepared to put his feeding tube back in so that he can do overnight feeds. For us this seems like a huge step backwards, surgically placing a tube, hooking him up to a feeding pump every night, etc., etc. Been there done that and can’t imagine doing it again. Michele and I, although shell-shocked, have decided that Max is not the “typical” case so we are sure that we can avoid this miserable fate by diligently working on Max’s diet to insure he gets the increased calories he’ll need (up to 15,000 a day!).

All of this ended at about 7pm when I was finally able to feed the kids "lunch" as Max called it. He's still expecting to have dinner! Tomorrow should be quieter, all we have to get done is blood work and other labs. I also have to set up an abdominal ultrasound and reschedule with the surgeon so we’re almost at the finish line of this marathon. Yippeeeeeeee!

I should really learn to keep my mouth shut....

.....and for those of you who know me this would be no easy feat. It seems that my last blog update has been proven invalid -- this trip can and did get worse today.

We actually arrived for Max's cardiac MRI at 5:30am as instructed only to find out that registration doesn't start until 6am. Trying explaining THAT to two very cranky children (and one rather cranky husband)! When the radiology tech brought us back to the exam room I knew we were in trouble when she asked me if we had had a call from their department on Friday telling me that our appointment needed to be moved. Now I know I look stupid but I couldn't help to think, "Is this girl insane?" Why would I drag myself, two kids and husband out of bed at 4:30am, walk in 20 degree weather, and wait more than half an hour to check in if I had had a call cancelling Max's MRI? At this point I was cranky but I held it together long enough to ask why they needed to cancel. Evidently the pediatric cardiologist is only in lab on Wednesdays, which we knew from past experience but because Max had an appointment with his cardiac surgeon at noon and we know he needed to see the MRI we assumed special arrangements had been made. WRONG! I asked what the plan was in light of all this, the tech told me they would go through the regular protocol (after I explained what Max's protocol was) and then if need be they could always get more film in a second session. Did anyone mention to Max that there might be a repeat MRI? I know I'm not crazy enough to go there....the child is still in the dark on this possibility. So after nearly two hours we were done and sent on our way. We ran back to the room to sleep for a bit, take showers and eat something before our appointment with Max's cardiac surgeon.

We arrive for our appointment with Dr. Vricella on time anxious to talk about the MRI results, Max's valves, the aorta repair, etc., etc., etc. After sitting in the waiting area for about 15 minutes with Mr. Monkey (aka Max) who was kind enough to entertain everyone in the room -- patients, secretaries, doctors, and interns alike --- we are told that Dr. Vricella had just been called into an emergency surgery so our appointment would need to be re-scheduled. Argh! Obviously this was an emergency so we understood completely although I must admit thinking, "And I subjected my son to that half-assed MRI this morning?" I guess we really could have postponed that to Wednesday as well. Ah, the best laid plans of mice and men.....So all in all Monday was a bust! It's 8 o'clock and Max has been asleep for two hours if that's any indication of how smoothly our day ran.

While sitting here in the kitchen at Children's House writing today's update a women came in to get something. I remembered seeing her last night, she had been talking to herself in a nonsensical way and I thought she was just a little whacky. Tonight she started a conversation with me and she told me her son had been rushed to the PICU last week and his brain tumor was back for the fourth time. Now this little boy is just eight years old, not much older than Max, and the doctor's have told her "this is probably it." So this woman who I had written off as "whacky" just 24 hours ago taught me an extremely important lesson tonight -- no matter how bad a day I had today it was still a good day. No matter how much I wanted to throw Max out a window because he was acting like a nut at least I have a son to loose my patience with. All in all, I guess I learned once again to be happy with what I have. Perfect its not but its better than most!

We're here safe and sound....

sort of. The flight was fine if you overlook the crabby man (who just happened to be a USAir pilot in uniform -- way to score business buddy) who actually screamed at my kids solely because they had the audacity to be speaking to one another. Evidently it is illegal to have a discussion on a plane when the pilot is trying to sleep! Who knew? I'm just really glad Max and Ellie weren't kicking his chair or pulling on the back of his seat, he might just have killed them.

On top of this Max's nose bleed the entire trip, we were all convinced our first stop in Baltimore would be the ER at Johns Hopkins. Knock wood he seems OK now. Thank God I had a really nice couple sitting next to me or I would have lost what little remains of my sanity. This trip can only improve from here.....

Tomorrow's the big day, so stay tuned same time, same channel for more news! Fingers crossed for good news only.

Have a great week all!

Midnight Post -- Baltimore Minus 10 Hours

This will be the shortest post known to man, mostly because it is midnight and we are NOT I repeat NOT even near ready. I hope I don't forget anything important like plane tickets, coats, Max's meds.....

Before all this chaos began this evening we had a wonderful day with Max's soccer team. What a great bunch of kids and parents! Their kindness and generosity are outstanding and we are very, very lucky to have come to know them. Max will miss his soccer buddies this week! We cannot thank the entire Fighting Falcon team enough for all they do for Max and his rag-tag family!

Remember to check-in this week, I'll keep the blog updated with appointment news, test results, etc. Have a great week and keep Max in your prayers!

Mid-Week Update -- Baltimore Minus Three

It's getting closer and closer and I'm farther and farther away from ready. At this rate it's likely that "packing" will mean throwing things in hefty bags and making a mad dash to the airport! I find myself running around trying to get everything done or I should say get done what I can remember needs to be done. An example of this occurred this evening when I spent over an hour running around the house trying to find my glasses. I screamed at anyone stupid enough to cross my path and still no glasses! Ellie and I hopped into the car and ran back to the store we just left and still no glasses! I get back home and tear the house apart (I found this exercise both a stress-reliever as well as counter productive considering this was the same house I had just been cleaning because I am psychotic enough to not like leaving the house dirty for a week while we're gone) and still no glasses! Michele then insisted that I sit down and eat something while he cleared the dirty dishes into the dishwasher and what does he discover? GLASSES!! I immediately blamed him, cleaned them up and put them on. That will teach him to never play games with my glasses again!

On another more positive note, Max's Market received a $500 grant today from Carl's Jr. restaurants which will really help us bring some great gifts to the kids at Phoenix Children's this Christmas!

Please keep us in your thoughts this week as we get ready for the "big trip" to Baltimore! By the way, if anyone happens to find my sanity would you mind e-mailing it back to me?