Monday, July 26, 2010

Behind the Lens with Nicholas



I've been going through old pictures from this past winter and came across a few days when Nicholas was behind the lens. These pictures just made me laugh out loud - they depict the kiddo he was then and is today.  Gotta love him (since strangling is out of the question, so they tell me).

Friday, July 23, 2010

The Up’s and Down with My Favorite Doctor

I can literally write a chapter with the same title for every one of William’s doctors. I have taken the crash course of learning the unfortunate truth that medicine is not an exact science….and far from that....it's a process and on top of that, we are dealing with human beings. Against our every wish for doctors to be infallible, they are not….they are people, just like you and I, capable of mistakes, just like us.

But, when we are talking about the care of another person…..a child…..my child….it presents a whole higher level of expectation. We are in a fight….a fight for William’s well being….there is no room for error. Period.

This is the story of how Dr. Tavares became part of our extended family….not out of friendship, coincidence or even out of choice…but out of necessity.

William's "mass" was first found on Sunday December 6th 2009. It was late that Sunday night (around 10:30pm to be exact) when we were greeted by William's pediatrician at our hospital window. Now knowing the facts, I can honestly say he completely downplayed the finding of this "mass seemingly coming from William's left kidney" and explained to us these things are often discovered and then found to be nothing serious and sometimes even go away on their own. He never mentioned the approximate size of this mass, nor did I think to ask (I was kind of in shock). He forewarned us that because there was a foreign body detected, oncology will have to be consulted. (again, I can write a chapter about this doctor, why he presented the situation as he did, my feelings and experiences with him since December….on and on, but I will try not to get off on a tangent,…).

The following morning, we met a skinny, dark skinned, long curly-haired doctor, Dr. Trisha Tavares....from Upstate's Center for Children's Cancer and Blood Disorders. At our first meeting, I remember feeling impressed with her. She seemed kind, yet very thorough, approachable and yet a little awkward (almost intimidated) by our bloated bub, William. That first meeting, she seemed pretty confident that she expected the "tumor" to be neuroblastoma (tumor was obviously her preferred choice of words, even though any time I asked a question, I went back to my more comfortable term, mass). It was like little snip-it flashbacks to college, sitting in a big lecture hall for neuro class learning about all the neuro-based disorders....I knew I had once heard of neuroblastoma, but couldn't place exactly what it was.....that is until Fred asked, "so we're not talking a form of cancer, right?" Dr. Tavares calmly nodded and said, "yes, yes it is a form of cancer....and it is treated with all of the traditional modalities for cancer, like chemotherapy, radiation, stem-cell transplant....but we won't get into all of that right now until we have all the facts cleared."

I remember her asking repeatedly, "do you have any questions for me?" All I could say was, "could you write down your name and phone number for me in this notebook?" It was like I knew I wouldn't even be able to muster up the ability to write as she was spelling for me....and so she wrote her name, nice and clearly for me (my kind of girl!).

Our new friend, Dr. Tavares came back later that day following the CT scan to basically repeat her theory of neuroblastoma from the better imaging they obtained with the CT. She explained the big day of scans and tests she was organizing for William to undergo the following day...but even then, I still clearly recall that I was not expecting our relationship to grow into what it is today with dear Dr. Tavares. I was kind of expecting she would lead us through the path of a simple condition, treatment and perhaps we would see her once and a while for routine check-ups. Little did I know.

After seeing Dr. Tavares multiple times for the remainder of that first week in the hospital, we kind of began to click more and more with each other. She seemed okay with my many questions, always written on a dilapidated scrap piece of paper and she seemed willing to uncomfortably laugh with me when I'd say, "okay, just one more question."

About a week into things (and the gift of a laptop computer from hubby, so I could spend countless hours researching things on the Internet) I scoped out Dr. Tavares' credentials and educational history. That was just a few days before Uncle John broached the topic of going for a second opinion at Memorial Sloan-Kettering. It was clear both he and Aunt Elaine were busy at their own computers doing legwork - looking for anything, just anything that could be the magic answer to make our little baby William cured of this nightmare. As Uncle John said the words, MSKCC, I knew the name sounded familiar...and then it hit me….sure enough, Dr. Tavares had done a fellowship there.

I remember feeling a bit numb with this realization. So, this world renowned cancer center, just 5 hours away from us, has an entire team dedicated to the treatment and study of Neuroblastoma. Not knowing just how big the hospital was, I tired to reassure myself that she must have not worked with the NB staff.

Why hadn't she told us about it, even suggested we go there for a second opinion? Did she have a falling-out with the doctors there and wouldn't want to recommend the hospital where she had just done a fellowship at? Was it a business thing...as she not allowed to support a family seeking treatment elsewhere.... like they'd be loosing money, a "customer" so to say? Gee, is she a good doctor, I mean I had been relatively impressed with her up until that point, but what should I be thinking now? Then there’s the consideration of this all happening out of Syracuse’s only state-run hospital. Why are these doctors willing to stay at this hospital? Do they get paid competitively well to attract really good doctors here? Let’s face it, we had been “assigned” to Dr. Tavares’ care merely because she was covering in-patient the day William’s tumor was found. We didn’t get to choose the doctor of our preference, we didn’t get to interview the other docs in the practice to decide who I wanted to care for my baby….heck, we didn’t even have another choice as to a different practice all together (let alone a different hospital choice)….this is how it goes if you have a child with cancer in the greater CNY area – you have this practice of 6 pediatric oncologist who only treat at Upstate Hospital…..no choice.

As the days hospitalized passed, we confided with the next oncologist covering in-patient that we were seeking a second opinion. That conversation did not go well at all (to put it gently. I don't even want to open that memory chapter now....I would really get off on a tangent –that conversation is an entry in its own). My mind kept swirling on why a doctor would not have even just put it out there that there's a team, top in the nation, which specializes in this rare condition. I mean, lets look at the facts, we had a 6 month old baby....a baby, with an inoperable tumor filling his abdomen, and the team is Syracuse told us they treat approximately 4 kids a year with neuroblastoma (actually, William was going to be #4 in active treatment over the past year). Their plan of treatment was to put William on the standard protocol of 8 rounds of chemotherapy and then see if the tumor had shrunk enough to be surgically removed by the one pediatric surgeon Syracuse has. But just 5 hours in the car, a team of experts prioritize at limiting chemo exposure....AND have a world-renowned surgeon who only does surgery on these types of tumors!

After our initial trip to MSKCC in December, and feeling very impressed with the entire system they have down there - from the kindness of everyone from the receptionists, to the promptness of the financial officer, the gorgeous playroom, the willingness of a secretary to get me a stash of disposable chucks after one of William's poop explosions, to the thoroughness of the nurses... and oncologist... and the surgeon who was willing to spend a few minutes of his time between surgeries to quickly review William's scans with us....I kept wondering every now and then, just why did Dr. Tavares not tell us about this place. After meeting with the team there, is was clear they had worked with Dr. Tavares. Why would she not have wanted to do the very best she could possibly do to better the life of this little, very ill child. Maybe she did not share our impressions with MSKCC - was that even possible?

And so, we went through chemo at Syracuse...had many out-patient visits to the grungy 5C clinic at Upstate Hospital, put up with the cranky nurses multiple times a week and truthfully seemed to almost stump Dr. Tavares at times. Through chemo, William experienced days he was just down right miserable.... days he would just cry, scream, eat, cry and scream, eat...oh, and not sleep. Although it was clear he wasn’t withering away to nothing, or so obviously sick he needed to be admitted, I can remember my frustration that he seemed so uncomfortable and unhappy and nobody seemed to care. It wasn’t like he was able to tell us his stomach hurt, or he had muscle aches, or a headache – he was a 7-8 month old baby capable of only showing his feelings through behavior.

Through this time, we were seen often multiple times a week at the out-patient clinic for labs and such. Dr. Tavares would do a thorough assessment of William at every visit....almost seeming to want to help me pinpoint the reason for the discomfort, even though she repeated many times that neuroblastoma tumors typically do not cause pain. I was also very frustrated with the cranky nurses who would go out of their way to tell me repeatedly how wonderful William looked - you’d just never believe he had cancer. Meanwhile I was trying to get help to make him more comfortable, perhaps even sleep (since as adults we are constantly told we need to rest and get extra sleep when we are sick). Just once, I said to a cranky nurse, "well if William weighs 20 pounds at 7 months old and has a tumor the size of a softball in the middle of his abdomen, how big would a proportional tumor be in an adult....like the size of a bowling ball? My guess is, a bowling ball in the middle of my abdomen would make me uncomfortable."

Now, in early February, just a few days before, William needed a platelet transfusion and Dr. Tavares felt as though William needed labs repeated before we were cleared to travel to NYC for our re-scan appointment. Thorough, she is! That Monday, she entered our cramped exam room to hand me a copy of his labs and say, “his platelets have recovered and are fine…you can go to NY.” I was ecstatic to hear the news…..yeah, get us back there, to a nice clean hospital, not this filthy place with cranky nurses….but at the same time, it hit me like a ton of bricks, ‘are we completely done with Dr. Tavares?’ I have to say, she almost seemed a little sad to give us the good news about the platelets and our clearance to leave town. I left it with her that I would call and let her know the plan following the appointments with the docs at MSKCC (as if they wouldn’t be in touch with her too)….it was like I didn’t know what else to say. She wished us luck in an awkward sort of way and off we went.

I truthfully thought that day, we would not ever return to that clinic. Nope, we were going to NYC and planning to transfer all of William’s care with them, why not, who wouldn’t want the absolute best for their child, even if it did involve us living at Ronald McDonald House for appointment and during treatment. It wasn’t anything against Dr. Tavares herself, but more so wanting the utmost best possible care and knowledge-base for our son with Neuroblastoma….oh, and I was pretty fed-up with the nurses at the clinic, the tiny exam rooms that I couldn’t even fit my stroller into and my many not-so-impressive appointments with other doctors of the HEMOG team.

Our experience at MSKCC for scans in early February made us even more thoroughly impressed with their timeliness and organization for the 4 days of out-patient appointments we had. When we got there, we were greeted with a little baggie of pre-dispensed syringes for all the medications William needed to take and a print-out of each day of appointment times, when he needed to stop eating prior to anesthesia, when to give meds and all the emergency numbers and contacts in case we had any questions/problems.

The following week, we got the news we had hoped and prayed for….William’s tumor had shrunk nicely, actually even considerably, and he was ready for surgery! Surgery was scheduled, and even for a date that seemed to be nearly perfect for out family’s schedule – it was like Sloan-Kettering had nailed every positive impression with us.

It was a busy two weeks between our scan appointment and when we had to leave for surgery. It was also the first time since early December that I had not seen Dr. Tavares multiple times a week. Although an odd feeling to be so free from appointments, it was a little nerve-racking worrying if everything was okay with William. Gosh, wasn’t anyone concerned with his blood work….or anything?

surgery time….

I still have mixed feelings about that entire experience. Over any other feelings, I am eternally grateful for Dr. LaQuaglia’s skill and expertise to have successfully removed all cancer illness from our William. To this day, he remains cancer-free now that that ugly thing was ever-so carefully and skillfully lifted from his body, thanks to an amazing doctor. I could have never felt comfortable with anyone else doing the procedure. It was incredibly complex, to put it mildly. We needed the best, and to be in the best place possible….and that is what we got.

On the other hand, I am full of a repeating recording of questions and what if’s….was it really the right time for the surgery? Why did he have so many complications, so many life-threatening complications that will continue to impact the quality of his life? What went wrong? How could we have been at two of the nation’s best hospitals and still have so many things go undetected for so long? Should we have listened to the Syracuse team and do more chemo? Like I said, I have a lot of mixed emotions on what happened over those 4 weeks hospitalized between 2 of NYC's best facilities, again, a chapter that deserves its own dedication.

After a month of hospitalization, I was nearly begging to get us out of MSKCC. In fact, I believe I was somewhat demanding us to be discharged. We ended up finding ourselves in an amazing cancer center….but no longer with the doom of cancer hanging over us, but now a myriad of complications…..pulmonary, platelets through the wazoo, GI-related problems…..and not a single pediatric specialist to cover any of our needs. I wanted to go home….and I wanted the security of our home physicians. I wanted to see little Dr. Karjoo, the GI specialist who first discovered William’s tumor, I wanted Dr. Tavares, who I knew would listen to all my concerns and at least listen to my interpretations of William’s behaviors and not be so busy and arrogant to just come in, tell me how it is and leave.

I had this idea in my head that all would get better, or even just go away once we got home. One morning, the discharge planner came to our room to discuss arrangements for William’s transfer. My heart stopped when she said, “well, we still need to wait and see if Dr. Tavares will accept William back.” WHAT? Did I hear that right? She might not have to take us back? Oh no, what had we done with going to another facility for the surgery? Did we make her mad? And dear lord, who else would we end up getting assigned to in Syracuse, if anyone would take William’s case on?

Thankfully, Dr. Tavares did accept the challenge of William’s new health crises (whether she realized it or not). I was so grateful to have William back home, back where we all belong…and all of our family reunited again. I was just as thankful to see our skinny, curly-haired Dr. Tavares, who, just as I had hoped, was willing to listen to me for nearly 4 hours one Friday afternoon recount all that William had endured while down in NYC. Ya see, we had beat William’s ‘next-day delivery’ of his medical records from MSKCC – but I know that she was equally accepting of my interpretation of events. I may not have had all the correct terms, and at times it was like a game of charades of me describing what a particular blood test looked at and her guessing the title of it.

And so, here we have been, ever since…back home under the thorough care of Dr. Tavares. Many in-patient admissions later since returning home in March, I am always proud to say Dr. Tavares is William’s oncologist….just contact her with any questions and she can explain it all. William’s case is incredibly complex – I’m sure he is not an easy kiddo to have on anyone’s caseload and we’ve learned he does not follow the books as expected. I’m greatly appreciative to Dr. Tavares, for honestly, she is overseeing all of William’s care, even though he is no longer an “oncology patient on treatment” (but seriously, once you are an oncology patient, are you ever not one?). She has given us guidance with GI concerns, has made countless phones on William’s behalf, has written justifications for William’s Medicaid approval, a nightmare of insurance justifications and has once again listened to my long-winded interpretations of even the smallest changes in William’s behaviors... and for all intense purposes, I feel has treated my baby with the best of care and thoroughness. Whenever William is hospitalized, for any purpose, she hunts us down and touches bases with us – who could ask for more!

So a couple weeks ago, when William’s RN, Lisa, from Visiting Nurses Association came to draw labs, she shared that she updated William’s nursing care supervisor about her previous week’s visit when I had shown Lisa this mysterious rash William has been sporting for well –over a month now. Many doctors and nurses have seen it, including Dr. Tavares, but nobody seems to know the source. We learned recently that rashes are very important to identify correctly. When William was hospitalized with the staph infection in his central line, he broke out in a rash after a day of IV antibiotics. Three doctors on the HEMOG floor were shown the rash and every one of them replied, “oh, it looks viral, no big deal.” Well, Dr. Infectious Disease (his name escapes me) seemed to think differently, and was rather alarmed when he initially saw it. As it turned out, that was not a viral rash but septic emboli – literally, globules of staph infection, white blood cells, platelets and such coalesced together around William’s infected central line, formed emboli which them let loose and traveled through William’s blood stream, until they got stuck in the small capillaries close to the skin – where they showed visible to us as a “rash.” This can be fatal….not to mention can do damage to heart valves (thus warranting the need for another trip to Peds Cardiology for an echo and EKG).

William’s care coordinator told nurse Lisa that the rash could be a sign William is developing an allergy to Penicillin (he has taken a low dose twice a day since early March when his splenic infarction was identified. Without a properly functioning spleen, it is imperative William have some prophylactic protection against strep-based infections…this could be fatal to William’s asplenic condition).

Ever since early March when the oral Penicillin was first started at MSKCC, William has had a difficult time keeping it down. As he did back then and continues to do now, William regularly vomits anything that has accumulated in his stomach. Sometimes, it can be an hour or more following taking the medication and he vomits mucous streaked with hot pink Pen V K. I’ve had many conversations with Dr. Tavares regarding his limited protection….since let’s face it, we have no idea how much actually stays in him and even so, we truly do not know what his absorption process is like, since we know things are not properly moving out of his stomach and into the intestine where it should be absorbed. The vomiting varies from day to day, week to week, sometimes better than others, ranging from a dozen times a day to about 4 episodes per day.

There are other options to the terrible tasting oral Penicillin – an IV form and an inter-muscular injection given once monthly. For her own professional reasons, Dr. Tavares has always decided in the end to continue giving him the oral Pen VK. She has sited reasons including the intermuscular injections are incredibly painful (why does he need to be put through that…I tend to agree) to wanting to avoid additional IV accessing, since every single access posses the possibility of a source of contamination/infection.

Thursday we were due for a refill on William’s Penicillin. The kids and I were greeted by our favorite friendly Target pharmacist, Missy (this girl is awesome! At first I found her way too nosey, but now, I trust her with anything….she definitely has our back and always willing to lend an ear or give advice. Trust me, we have had many in-depth conversations at her little red counter – kudos to her!) William had the rash along his neckline so I thought to get her opinion on the “allergy rash theory.” Sure enough, she agreed it could be a possibility and advised me to call HEMOG before refilling the medication. She said it could be a delayed sensitivity, of which his entire prophylactic medication would need to be changed to a different category of antibiotics, likely a broad-spectrum antibiotic.

My call to HEMOG landed with me talking to my favorite nurse, Anne who informed me Dr. Tavares was covering in-patient and so she would run things by Dr. Sills, who also cares for all the sickle cell kids, who too are on Penicillin. I thought the theory seemed to make perfect sense: this rash varies with intensity from time to time, but is always here in some fashion….and could certainly correlate to the amount of Penicillin William actually consumes.

Well, Anne had a different tune when she returned my phone call. She said Dr. Sills reviewed William’s case and his lack of spelenic function and said it is absolutely imperative to William’s well being that he have full Penicillin protection. He would not change antibiotics unless William was experiencing full-blown hives or indications of anaphylactic reaction. Penicillin is the best medication for treating strep-based infections and William requires uncompromised protection! She said William will need to come to the clinic tomorrow (Friday) for the inter-muscular injection – no questions asked!

Anne then went on to share with me how terrible she felt that he needed the injections – clearly, it is the most painful injection given and could even require two injections, since they are limited by the number of cc’s that can be pushed with each injection. She was not sure of his dose, but prepared me it was going to be a traumatic experience.

Needless to say, I spent all of Thursday evening researching my concerns of William being injected with a long-acting substance (30 days worth) that I still had concerns he was developing a sensitivity to. What would happen then? What would they do if he had an anaphylactic reaction to the injection? Thankfully, Anne was more than willing to call in a prescription of topical Lidocaine to at least decrease William’s sensation of the huge IM needle piercing his skin – he would just have to suffer through the pushing of the stinging medication and the sore leg for a few days….

Friday morning first thing, I called our IV homecare company, Coram, to discuss the options of IV penicillin. Sure enough, the pharmacist told me there are many options, depending on the dosing requirements, etc…but it sounded to me it could be done. I also called HEMOG to give Anne and the doctor we were going to see a heads up, so to say, that I was coming armed with a request for IV penicillin as opposed to the injection form.

As it turned out, I did not have to put up a huge fight. Dr. Sima too could not identify William’s rash and Anne testified to her that even during the half hour we waited for the doctor to examine William, the rash looked of differing intensities. She agreed it may not be good to inject him with a full 30-days worth of slow-release medication, even though she does not think the reaction is linked to Penicillin, but was fine with transitioning to IV meds. Again, I feel like I could go nuts here, since Dr. Sima has cared for William a good three times while he was in-patient and was well aware of the difficulty keeping anything oral down – particularly this Penicillin, but now….I guess things had been taken up a notch with Dr. Sills’ firm stand.

And so, an appointment I expected to be under an hour, traumatic, but should have been relatively brief, turned into over 4 hours at the clinic. William got his first does of the IV Penicillin there to watch for a reaction, of which thankfully there was none (except he did get excessively red throughout his face and head about an hour after we left. It lasted for nearly an hour and eventually dissipated….who knows!).

I have to say, the busy two days of conversations back and forth with the clinic, all while Dr. Tavares is covering the 11th floor was rather frustrating. If this was SO obviously imperative to two other doctors, how was it overlooked by William’s primary doctor….especially since she has known time and time again about William’s inability to get it down (down for good, that is).

While I was at the clinic, I asked for copies of William’s CT and MIBG scans for our records. Dr. Tavares had called us with the results, but surely, I too needed to see them for myself. I was shocked to see a couple details that she did not address during our phone conversation including comments of atelectasis (collapse of lung tissue – a post-operative condition William struggled with for a month after surgery) and my realization that William was given I-131 radiopharmaceutical agent instead of I-123 which is less radioactive and more reliable for picking up neuroblastoma activity. With these realizations this weekend, I have to admit it has consumed my entirety. I have concerns with this noted atelectasis, for it could merely be associated with the fact her was under anesthesia (which Dr. Sema justified to me at the clinic)…but my research finds it can be a chronic condition….seriously, could we also be dealing with long-term pulmonary problems from this operation too? Honestly, can we take one more thing? Is Dr. Tavares aware of how significant his atelectasis was post-surgically?

In a sense, I feel terribly let down by our good doctor…. Especially concerning the wrong iodine administered. Not only did I discuss with her my concerns for getting William to orally take the Lugols solution (to saturate his thyroid with “good” iodine prior to the radioactive iodine being injected into his bloodstream) but then he was given this out-dated form on iodine for this test. What!!!!

I feel let down by our doctor, but even more so, I feel as though I let down William. Although it is extremely difficult for me to keep up with all that has now become our “daily life,” I never knew I would have to worry about these things beyond my direct involvement and control.

Not knowing how exactly to handle addressing my concerns with Dr. Tavares right away, I decided to call MSKCC to get their reaction to my scan concerns. I called Dr. Modak’s office and got a live person, his secretary Ronnie (this is always the case – you don’t have to go through the archaic phone prompt system at MSK like you do calling any of the specialty groups at Upstate). I initially asked to speak with an NP and Ronnie assured me she would also cc Dr. Modak of my call. Sure enough, Dr. Modak (who just returned from speaking at the Children’s Neuroblastoma Cancer Foundation’s annual conference in Chicago) returned my call that night around 7:15. Although he seemed to do his best to maintain professionalism, he used the term “medieval medicine” when I informed him of the use of I-131 (yeah, make my heart break into a million pieces). He explained the need to ensure William will always have I-123 because it is less toxic/less radioactive and is also a more accurate agent. He was also disappointed in the fact that William had a CT scan done as opposed to an MRI. Although not as thorough as an MRI would be, the exposure to excessive radiation makes an MRI a better choice (unless further cancer activity is a concern from other images).

Thankfully, in the end, we will send William’s scans down to MSKCC to be reviewed by their radiologists….and will more than likely be pursuing future scanning down there...definitely his next scans in September. This is a tough position to be in – on one hand, I want to stay as close to home for these now “routine” types of care…I would love to support our local children’s hospital….our local doctors, nurses, everyone that makes Upstate the relatively nice place it is……but seriously, this is just unacceptable.

After mulling over this for days, I was surprised with a call from Dr. Tavares last Wednesday. It was nearly perfect timing, Nicholas was napping and William was content in the playroom.....and fortunately for her, I had not yet put together a detailed list of my concerns to discuss with her. She was merely calling to to review William's bloodwork from Monday, discuss TPN orders and to see if we had a scheduled date for the G-J tube placement. I felt badly for throwing a rush of concerns at her, topped with my highly emotional reaction - let's face it, it was nice of her to call instead of assigning the task to a nurse. On one hand, I felt terribly let-down by oversights, but after a nearly 40-minute conversation, I once again, was reassured of her commitment to helping William and was comforted in some fashion to have her overseeing my baby's care.
I don't at all want to sound unhappy with Dr. Tavares. I still feel as though if I were to have the ability to interview all the other 5 peds oncologists in the practice, I would hands-down choose her, for many reasons. She is thorough, yet she is not afraid to say, "let me look into that or I should consult with another specialty." I can tell she tries to be understanding to our family's situation and concerns. Let's face it, I can't think of another profession that would be as difficult to do, day in and day out....you are dealing with extremely sick children...and your recommendations for treatment make them more sick before it makes them better.

I love how Dr. Tavares has seemingly grown to genuinely look forward to seeing William. She gets down to his level and greets him, comments on his hair growth or something cute...and has really grown to want to hold him and maybe sneak in a little cuddle. I can't imagine how difficult it would be to always need to remind yourself not to get attached to these kids...but I think I see a glimpse that she can't help but get a little attached to our William. That too gives me some sort of comfort.

In the end, this is just another bump in the road of our journey to wellness for William. I still hold true to my statement, I could not wish for another doctor than Dr. Tavares to care for William...and to care for us through this all. I am ever-so grateful to have her on our team and truly don’t know where to begin finding a way to thank her.

~
On a side, these are the things that constantly go through my mind…..always a “I gotta remember to ask about that….what’s the status with that? Did I ever research that….? What did I do with that info about the new medication I researched? What was low in his bloodwork this week?.....What did they do when such-and-such was too high in his labs? Did I write that down…..now how should I handle this debacle without seeming like the crazy, demanding mother…. ” and on and on.

I can be playing with the kids, watching tv, eating dinner, driving down the road, giving the kids a bath….whatever I may be doing and these are the things that just run through my mind…..there seems to be no way around it….it’s ever-consuming…..as is the life of an oncology child’s mom, I guess…

Saturday, July 17, 2010

Mommy's oops

July 13, 2010
William and I were running late for a doctor's appointment so, I quickly tossed him in the car. As I was backing up from the driveway, I heard him giggling, another giggle and another. Suddenly, it occurred to me - I had put him in Nicholas' car seat! I stopped the car, checked to make sure the straps weren't rediciously too big (which of course they weren't - needed about 2" of tightening) and figured he might as well have his first forward-facing ride.
He loved it! He chuckled the entire time, which was so precious to hear behind me. Later that night, we went out with Daddy, just so he could enjoy the giggles.
video
Let's just say we need to shop for a new throne for William!

Friday, July 16, 2010

The Big Boys

Nicholas has been thoroughly enjoying hammering golf tee's into the foam insulating sheets that line William's IV medication deliveries (seriously, this stuff is an OT's dream). When Dillon was over, they both stayed busy pounding away.

Go Dillon!

This day, Nicholas was cracking himself up making silly sound effects while popping out the tees with the hammer claw end.

Two cousins about to spend nearly a week with Grammy & Poppie....

good luck guys!

Baby Cousin Time

Yesterday, Evelyn came to down for a day. These two really seemed to hit it off
...baby style!












What a gentleman to push around baby girl. You can see how proud of himself he is, as Ev is just loving her ride.

My favorite of all!

Thursday, July 15, 2010

Childhood Cancer makes CNN news!

This article came to my attention through a post on PAC2 (People Against Childhood Cancer). Not only does it have wonderful information, but I just love the picture of Jasan, the NB survivor....makes me think of William as an adult. We all know William will go on to do amazing things in his life...can you just picture it...

http://www.cnn.com/2010/HEALTH/07/14/childhood.cancer.survivors/index.html

Thursday, July 8, 2010

Nicholas-isms

Out of the mouth of Nicholas
"Oh no, Mommy! There's a problem, come quick! Look, we have two tomatoes that turned orange!"
Me: "Honey, that's a good thing. They are ripening."
Nicholas: "But tomatoes are supposed to be red, NOT orange! I need to take these plants back to Hafner's and tell them they are broken!"

Daddy: "Oh Nicholas, I love you."

Nicholas: "Daddy, I love you in the morning."

"Mommy, you are a genius...just you and me are a genius."

"...that would be a nice treat"

"help, help, the tormado (tornado - one of William's many nicknames) is coming!"

Wednesday, July 7, 2010

Why....why us...

Well over a month ago, I said to myself that I really need to resume blogging. I have many, many fond memories of looking forward to getting Nicholas down to sleep, only to run to the computer to journal our adventures of the day, whether they were big, small or sometimes nothing at all. I tried getting back into the swing when I first wrote a blog entry in May after a long hiatus. It took me days, weeks actually, to put together a post. The bottom line was obvious, that old admiration for something so simple just was not present anymore. I struggled...I didn't want it to become a pity party or something that I would be embarrassed to have other people read or look back on years down the road.

Its like addressing the giant elephant in the middle of the room.....its there, ever so evident, but you just have not a clue how to go about figuring out how it got there in the first place...and what the heck to do about it.

And so, one night weeks ago, I started an entry...entitled it "Take that, cancer." I tried ever so hard to be uplifting and positive, like as if my taking a positive tune would help bring positivity to our lives. My husband seems to be following said approach....and it seems to be working well for him....yeah, but not so well for me.

Another week later, I edited the title of that entry....."Cancer sucks!" yet still, it wasn't right....

And so, another hectic week or two goes by, many nights when I'm just completely exhausted to the inner core of my bones by the time both kids are down for the night (getting William down is always a curve ball - some nights it takes 20 minutes, other nights well over 2 hours....you just never know what you are going to get thrown each night...and then once he is down, its time to rush to get him hooked up to his TPN for the night and then wait to see when he will wake for the first time of the night....will he pull the infamous 20-minute later waking or will he manage to sleep for a couple hours and then wake just as I'm ready to hit the hay....you just never know....).

Here and there I went back, re-read the entry, had to change it depending on my thoughts of the moment, but no matter what, it just wasn't flowing right. It reminded me too much of my feelings when reading William's Caring Bridge journal entries. I sincerely have to preface this with the disclaimer that I truly, truly appreciate my mom's work and all her hours upon hours of work she dedicates to the CB site. Lord knows I certainly do not have the ability to take on sharing the information, I can barely keep up with daily life around here (and sometimes do not even accomplish that). The bottom line is, I sense my mom too is stuck in the place where she is trying to put a flair of optimism to the situation. Although she does not live here and does not really know everything that happens under our roof, even in one single day, and certainly does not know my inner-most thoughts (most of the time, we can barely convey the most basic information to each other between all the chaos)...., but I can always tell my dear mom is trying her best to keep things accurate, but with a sense of kindness to it all, almost like the need to protect people of the real hell that has been surrounding our family. I read it and say to myself, "really, that is my life....why am I struggling so much....that doesn't sound so bad....."

The fact of the matter is this, words just can't explain what our family has been through over the past year....

period.

I'm always torn as to how to express these feelings. On one hand, I don't want to just complain relentlessly about this experience, as it is, just stating the facts of what we go through medically is overwhelming enough, let along including any emotional notes. But on the other hand, perhaps it may be a little therapeutic for me to get these thoughts out in some form.

But seriously....this sucks!


This has been a nightmare. A complete nightmare... one that seems like I just can't wake up from, as much as I try.


....its the unwakeable nightmare......and its our life.


At the heart of it all is an adorable, chubby pale-faced little boy, innocent to his inner-most core. He never asked for this, for that matter, none of us did. We merely anxiously waited the arrival of a second child, one to love, one to enrich our lives and welcome into this little world of love we had built for him to join.

Unbeknownst to us, something else was already bearing its ugly self, silently inside our William. This horrific disease had snuck into our dear William. It hid inside him, multiplied and did unimaginable devastation. On one hand, I thank god it's a rare condition, and for that matter, thank god pediatric cancers are rare overall. Nobody needs to go through a similar, or heaven forbid a worse experience than we have. But if it is so rare, than why.....why us......why did we have to be one of the 400-600 families this year who had to take this road?

Tonight was expected to be a nice family outting, one we had been looking forward to. Nicholas started gymnastics lessons. Like everything in our lives since December, we don't get too excited for scheduled events. We struggle with planning things too far in advance, or getting Nicholas' hopes up for something that may not be able to happen with the unexpected turn of a temperature in William brought on over night or anything else that could drastically change our plans. I learned the hard way of what happens when you get a 3-year-old pumped for a fun event one night at bedtime, only for him to wake the next morning with his mother and brother gone at the ER, leaving one very disappointed boy who was going to miss his friend's birthday party at the bounce house.

Back to tonight.....so months ago we were walking around Shoppingtown Mall one quiet Sunday evening and came upon a new gymnastics center. Nicholas was highly intrigued with all the equipment and watching the kids giggle and bounce on the mats. When I found the opportunity for gymnastics lessons offered this summer through our town, I was excited for him to have the opportunity to participate. This was just after our rather tumultuous experience with soccer lessons (of which I desperately counted down the minutes for that to end......Nicholas certainly did not take to the team sport and my patience for trying to keep him from laying on the field each week was well-weaned by week #5).

Nicholas too seemed interested in the prospects of gymnastics. He's asked a lot of questions, "will I get to jump really high? When can I fly across the room?....." and so, I had high hopes for his new-found interest.

Whether it was the fumble on the spring board on his first attempt to jump into the foam pit, nerves or just plainly that he is not at all interested in sports, lets just say the one-hour session was not at all what I was hoping for....and point-blankly, not enjoyable for either of us. I ended up intervening (yes, became the over-protective mom who ran over to her child after I saw him trying to explain to the young instructor all his concerns with attempting a second try at the spring board.....I knew something was going downhill when I saw his arms outstretched at his sides, bouncing with emphasis as he was doing his best to relay to her his convincing argument to pass on his turn.)

Once I was on the gymnastics mat, it was nearly impossible for me to get off. My little man clinging to me, asking me with most sincere pity, "please Mommy, just come hold my hand and come try it with me."

The entire time there, I couldn't help but look around at this room full of similar families of preschoolers.....they weren't begging their kids to participate, trying to peal off their child from a tight clutch of panic and disinterest. Yeah, a few kids benefited from a little redirecting from their parents, and many posed for those ever-so picture perfect, "first gymnastics" pictures....but what about us.....let's see, after I begged Fred to get out of work a little early to join us in an effort to be supportive of Nicholas' new interest and also be there to help out with William (since I didn't know what to expect of the set-up and what parent participation would be like for the first session), he was long gone to the car. As it turned out, the building was not air conditioned and poor William was nearly melted within a few minutes of being in the sauna of a room. He certainly can not handle such situations on an 95 degree day, nor is it good for his condition.

As I was dripping with sweat, literally, and doing all I could to encourage Nicholas to take a second try, or even for him to go over to an old friend who we have not seen literally since his birthday in November.....he suddenly tells me, hitting me like a ton of bricks....."Mommy, I just can't. I can't do it, I don't have any friends and I just can't do it now because I have no friends."

My heart skips a beat. I don't know how to respond.....is he just coming up with something, anything to get out of participating......is this his way of expressing the fact that he is the only boy in his group....is it just awkward seeing a former good friend who we once way once played with multiple times a week....or is he telling me something more, something like he feels just like I do being in this giant room of people.....we just don't fit in the way we once did.

As I have said before, our experience with cancer has undoubtedly changed us. It has changed the family we once were, and has forever changed the people will are now and will forever be in the future. It has stripped us of our innocence, has beat us down to the point of exhaustion and in some sense, some days, has ripped our excitement for life away from us....all of us. We do not feel safe away from the little cocoon of our home, like we are exposed too much....it seems like everyone knows about us.....but at the same time, nobody has a clue about us.

That brings me back to my question, why us? Why did this have to happen to us. Surely there are other families more suited to handle this better than us.....why did this cancer have to hurt our William, invade our lives, hurt this adorable, innocent little baby, impact the life of his once fun-loving brother....why didn't it choose another family with more patience, or more money, for instance, to better handle the financial burden this has created, why not choose a family with retired grandparents to be more available to help out....how about a family with stronger faith so they wouldn't be constantly struggling with these questions of why.....how about finding a family who is less aware of the medical side of this all, one who the hospital staff would not have expected to take on all the central line care and just arrange for a homecare agency to send a nurse out to the house for all routine care needs....how about a family with better insurance coverage....or better job security so the looming fear of William lapsing in insurance coverage wouldn't cause an already exhausted family to loose more sleep over worrying about that...

Plenty of people have told me, "thank god William is so young and he will have no memories of any of this that he has been through." The bottom line is, we ALL have been impacted... changed.... and some days, such as today, I would have to add, nearly destroyed from this experience. This is not something that is going to be "behind us" someday....

...it is us.

As I was in the middle of this stifling room with all these average looking people with bouncy, happy, kids participating in their first gymnastics session, I couldn't help but to just look around and repeatedly ask myself why us. Why has this been chosen as part of our path...why is it that when I see a little boy running up and down the spring board run do I want to avoid even looking at him, seeing how happy and innocent he is.....doing all the things he should be enjoying without a care in the world.....he's not carrying a pack on him for his IV fluids, he doesn't have crusted vomit around his nose from an earlier experience of the day, he doesn't have to be careful not to get his shirt wet when drinking from his mom's water bottle to stay cool (because he doesn't have a sterile dressing covering his central line under that cute little shirt). I reluctantly asked the fellow gymnastics mom how old her little tot was, only because I felt the need to be nice, since he had decided to carefully examine my purse and help himself to anything that looked intriguing. Sue enough, she replied, "oh, he just turned a year old....and he's getting this walking thing down waaay too fast."

Gulp.....

....exactly....that is what kids this age should be doing......running around entertaining themself as his older sibling is having fun on the gymnastics mat, learning how to do a somersault.

So as Nicholas and I headed for the car, me doing my best to hold back the tears, only to find a frustrated Fred out in the car with a sleeping William at 6pm (apparently William had screamed for over 20 minutes in the car before passing out....finding him sleeping was not encouraging, since you can imagine what that will do to our already too late bedtime routine for a one-year-old who thinks naps are beyond him). So, in the end, our night that just a mere 80 minutes prior we had left the house hoping for a nice hour of cheering Nicholas on as we watched his first gymnastics class....had once again, been added to the disaster list.


~

Ever since Paige's Butterfly Run where they had signs stating pediatric cancer statistics, I have had the stastics running through my head...


Today, despite amazing research progress, cancer still kills more children than any other disease. Each year cancer kills more children than asthma, diabetes, cystic fibrosis, congenital anomalies, and AIDS, combined.

11,000 young people are diagnosed with cancer every year.

Each year about 2,300 children and teenagers die from cancer.

Although cure rates are steadily increasing, 35% of children will die from a diagnosis of cancer.

36 children and adolescents are diagnosed with cancer everyday in the United States.
One in every four elementary schools has a child with cancer.

The average high school has two students who are current or former cancer patients.

Childhood cancers affect more potential patient-years of life than any other cancer except breast and lung cancer.

Cancer is the leading cause of death by disease in children under the age of 15 in the United States.

The causes of most childhood cancers are unknown. At present, childhood cancer cannot be prevented.

Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region. In the United States, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65 years.
Nationally, the incidence of cancer in children is over 15 times greater than that of AIDS in children.

One in every 330 Americans develops cancer before the age of 20.


~

At some point in this journey, I will eventually find the answer to my question of "why us..."...why is our William one of the 400-600 kids who was diagnosed with neuroblastoma in 2009...but for now, at least today, it is something I am deeply struggling with and one that does not bring any sense of comfort.

Everyday is a struggle. sometimes, just getting through a few minutes is a struggle. This entire experience has been exhausting....physically, emotionally, spiritually....exhausting in an all-encompassing sense and to all of us, that being once again very evident with Nicholas' reaction at what should have been a fun experience for him.
And so, our blogging may take a different direction for a bit, but a direction that needs to be shared. It may be raw at times, un-edited...but promised to all be true to the people we are....to the people we have become....

Monday, July 5, 2010

Enjoying the backyard

July 4, 2010
William gets himself to his favorite garden center and goes right for the vegetable bins where water accumulates....seriously, he loves water!

classic William, sporting his hydration backpack

I love this picture of my Ub-bub...

~ enjoying the tire swing ~