Wednesday, July 17, 2013

Back to School Routine

Somewhere along the line, July became synonymous with Independence as well as the looming chaos the impending school year presents. Most parents fret about the projected expenses of school supplies, new clothes and all of the impending "activity fees". For us the stress is associated with Back to school scans- Back to school endocrinology appointments- back to school physicals and the emotional cost each one weighs on the entire family. I wish hunting for the elusive white eraser, no pink ones allowed caused the bulk of my anxiety attacks and driving around town. As the 2 weeks dedicated to scans, hopefully comes to a close tomorrow- I've noticed everyone in the house deals a little differently.

Lily is a little roller coaster- as her trying to function adrenal gland and administered cortisone dose compete to see which can turn her into the little purple hulk the fastest. She's happy, then sad, then afraid then really angry. It's a Bipolar Princess on Parade and it all happens in the span of minutes and instigated by something as simple as a sister touching a toy that laid dormant on the living room floor for the past 72 hours. She talks a lot and says hysterically inappropriate things. She is a stickler for routine and it is important to gradually ease her into change by implanting ideas bit by bit. Although springing new ideas on her diminishes the amount of time spent harboring endless questions about every possible contingency- by giving her short notice- you run the risk of activating the purple hulk which sometimes has exponential collateral damage.

Bella is a freak show on wheels. Considering the mighty mite spent her entire toddlerhood napping in hospital beds, cots, or strollers in Tripler- I expected her to be a little more nonchalant about being the patient. Based on her trip to the doctor for her presedation physical- I figured she might revel in the one on one attention- even if it might be accompanied by an IV.

 I did not expect for a better part of the week prior- for a red flash of lightning to randomly bolt in an out of the room with the count down of how many days until she had her MRI. The night prior- she ran back and forth in the back yard screaming- My MRI is tomorrow and I have to get and IVVVVVVVVVVV!!! I don't have any idea why we are considered the closest thing to the Addams family as you can get in our neighborhood. That being said- she was an absolute rockstar(according to dad and staff- who attended the IVVVVVVVVVVVVVVV placing party- I was at home preparing the other 2 for their MRIs and followed in trail.)

Kiera talks. And talks and talks. And vibrates a little. And giggles inappropriately. She will tell you story after story that she cannot even get through because she is giggling so hard and none of it even resembles funny- at least I guess it might be funny if it wasn't utterly incoherent.  She is very brave and much like her mom tends to internalize discomfort- emotional or physical and dreads the unknown. All of theses scans are filled with unknowns and her giddyness betrays her.

Phillip acts tough, walks tough- does the whole apathetic thing- everything's cool and he would have gotten away with it too if it hadn't been for that meddling MRI. That and I made him check his blood sugar before the MRI- are you stressed? No. Are you worried about the scan? No. Is it going to be hard to lay there? I don't know. What's your blood sugar? 293. BUSTED. His blood sugar goes up when he's stressed. The body goes into conservation mode and holds onto sugar.

I don't know if it helped or not that on the morning of the scans the two older kids and I both had interviews for a research study about genetic testing. That is some funny schtick right there. Now I try to shield my kids from the stress of their mutant genes and most of the behind the scenes fodder that goes on in relation to it. In a 1700 sq ft house- It is tough to find a quiet spot away from anyone for very long on the phone. I try to not talk in front of them- but I never how much they actually overhear or interpret from beyond the non insulated steel framed walls. With the business of doctor's appointments and scans- I never had the chance to talk with them about what the phone call was about. So when Kiera woke up- I gave her a brief idea and told her just to answer the questions honestly. Before I could wake Phillip up- the phone rang. So when the interviewer asks- which child to talk to first- I said- the awake one- although in the case of the boy it probably won't make much of a difference in his helpfullness. Kiera gets on the phone and although I can only partially hear the questions being asked- I can tell I may have been wrong- neither of these kids might be particularly helpful. Not that it is a bad thing- it means I may be shielding them a bit better than I thought. Now we are looking at the other end of the pendulumic swing and I will probably have more questions to answer after this call. Here's the gist:

Do you know what genetic testing is?
K: No
Ok, genetic testing is.......yadayada..does that make sense?
K: Yes
Have you had genetic testing done?
K: No
Has anyone in your family had genetic testing done?
K(looking at me- I point to me and Lily- she nods)- yes my mom and Lily.
Do you know why they had genetic testing?
K: For cancer.
Do you know when they had genetic testing done?
When did you find out about their genetic testing?
K: Just now.

Oh yeah- this is happening. I start laughing and figure out it's best for me to leave the room, wake the boy and brief him on what's going on. I swear to god we have talked about this stuff, a lot- over dinner- they have sat through so many damn appointments and visits with oncologists- it makes me want to bottle the tunnel vision of youth and bathe in it nightly.

Phillip manages to answer the initial questions a little more assuredly. Although he too pointed out that he just learned all this stuff this morning. We really need to work on poker faces. The line of questioning goes towards screening and what they have done and he looks at me and gives me that squint- that squint you get from a child when one part of that tunnel vision opens up and they start to see the outside world. Scans have been presented as something we just do- like going to the doctor for a check up- getting your teeth cleaned. It just clicked that we are getting scanned to look for cancer because we have a predisposition to cancer and early detection saves lives- the 13 year old translation of this is: We get scans to look for cancer because if we catch it early we can get it out and live. And right then another chunk of my heart rips open- because no matter how much I want to protect them from this truth, it is the truth and whereas most kids learn to worry about crossing the street and not getting in cars with strangers- kids like mine have to worry about so much more. I wish I could protect them forever- but at some point- around the point they stop believing that a magical man and 8 tiny reindeer deliver gifts for good little children- it doesn't help to sugar coat the truth too much. He answers more questions and I learn how he understands certain scans have different risks and he knows that his genetic test doesn't mean he will get cancer. But how much can a 13 year old really understand? I was just a year older when the whole genetic cancer links were being tossed around in family conversation. Then again those conversations and experiences helped me dive into science and nurtured my love for research and trying to find answers- who knows where and how this generation will be inspired to end this war with cancer.

Phillip goes on to answer questions which I think were about risk and measures we take to reduce our risk of cancer. This makes a couple of answers Kiera said kind of funny- she said I don't let them go near radiation and we don't go through the metal detectors at the airport and we always have to get patted down and that I buy good food at the commissary- nothing that would cause cancer in it or anything. Ah out of the mouths of babes. Of course Phillip said we have scans to look for cancer and that I am always yelling at him about putting sugar in his coffee because too much sugar causes cancer.  I relayed these findings to Phil later who smiled that darn twinkly smile and said- wow- that didn't make you look crazy at all! I remember a certain historical figure being laughed at for claiming the world was round. I stand by the teenage interpretation of my ways- hopefully some day down the road , the bigger picture will make more sense to them. It also makes more sense why Phillips blood sugar was so high- on multiple levels!

Our marathon day was much nicer for the few minutes I got to sit next to Phil in the MRI waiting room. It's not often we get to be together for these events and I so appreciate when we do. I do envy it when I see both parents ushering a single child or two through the waiting room in clinic- it just is so much easier to have your partner there especially when they are well baby checks or easy stuff. But then I remember, like my husband  there are probably precious few appointments these dads get to come to and in any event it is good to see them there. Bella was still being scanned- hers ended up being a 4 hour marathon of sorts. I walked up to recovery with her- where she is very different than Lily in the waking up department. Bella tries to project herself off the bed at any given time. I guess that was the reason her scans took so long- every time the sedation wore off a little- she was throwing herself around. Even in sedation mode- the little redhead is a firecracker- no surprises there. For minutes she is talking- yet can't open her mouth- I just hear noises and see her jaw moving up and down. She then tries to sit up but manages to fling herself into the rails. A few minutes later her lips work and she keeps trying to talk- I'm not as fluent in sedated Bella as I am with sedated Lily speak. It takes a few more minutes before I understand. It didn't hurt at all, the IV. She was really dizzy- she'd open her eyes- I'm dizzy then close them, not dizzy any more, open them- I'm dizzy again. It was pretty funny. I reached for my phone once to video her and she literally sat bolt upright and I barely caught her before she went neck first into the rail , she had limited head control and as her body went forward- her cranium stayed put. I caught her and held her- and she gave me the biggest, goofiest, conspiratorial smile. I want to go. I know- we have to wait until you can move your own body first. Why? Because they have to make sure the medicine wears off.  She smiles again. The words come out slow and I can tell it takes much effort.  You know how you walk...with your feet? Yes I know how to walk. Can you carry me? Yes I can carry you. Ok, Let's do that! Wait a minute- did you just ask for a jail break??  The nurse laughs and goes back to entering data. They must have tomes of funny things kids on sedation say- I should ask next time. Fortunately Belle falls asleep and we go through various iterations of this conversation until she finally wakes up enough to give me this smile...
The nurse is convinced I have Bella's floppiness under control and lends us the wheelchair to go see dad down in MRI waiting. He makes sure I sign the discharge papers-  we are definitely marked as a flight risk. Phil is sitting across from a young woman who looks like Kiera did 2 hours before- like she might vibrate out of her skin at any time. I am regaling Phil of drunk Bella tales and her desire to Jailbreak and he says the other 2 should almost be done. I told him not to hold his breath since Belle took 4 hours- at which point young lady squeaks- it takes 4 hours?! Phil- being ever compassionate- and thoroughly used to stress cases - says- oh no no no- they had full body MRIs- most only take 30-40 minutes. Oh Thank God! And you have 2 more in there right now? Were you all in an accident or something? Most days feel like that- but for us this is part of the routine- this is how we get ready for school. 2x 1.5 hour endocrinology appointments, 3 physicals, 4 full body MRIs, and  1 CT scan. This allows me the medical currency and physician oversight of 2x 504 plans and Individualized Education Plans for medical conditions so 2 can go to school. This gives us a little peace of mind for the time being that everyone looks free of any oncologic concerns. Now I can focus on things like - books and supplies and clothes because all of that only accessorizes the things we need to accomplish to make sure the kids are ready to learn.  Mostly I am grateful to pay the emotional stress toll for these 2 weeks of scans because now they are done and the kids get an all clear!

Sunday, July 14, 2013

Clean Scans

Lily had her MRI's and CT last Monday. As soon as it went up on the calendar, preparations begin. Lily talked about how the dart hurts. And she still feels the IV go in, but she feels weird. I let her know that just getting the IV is an option. She is understandably distressed as she has had several bad experiences. Sometimes I am baffled by her, considering she was practically sliced in half and had a huge chunk of calf removed - in comparison a poke is pretty minor. But then I remember that to monkey is only 8. Most 8 year olds have limited experience with any of it and 8 year olds are not considered with the relative pain scale- they are concerned with pain and any needle- no matter the purpose is pain. Lily is logical. I remember when Phillip was little- he didn't respond to time outs as much as if you sat him down and reasoned with him. The key with Lily is timing- if you broach a subject too soon- the OCD kicks in and she obsesses for a long time and the issue becomes larger than it needs to be. Not enough time, she can't prepare herself and fit it into her view of how things work. So I've learned to ask her questions and let her figure it out.  So I ask her what's the worst part about the MRI? The poke. Ok- we can't get rid of the poke- but what can we do to make it quicker? Well the one time they poked me like 5 times and it hurt a lot. Yes and we WILL NOT let that happen again- I have made that clear- I talked to the nurses and they know you are not a pin cushion. What's a pin cushion? Clearly mommy has not had much time available for sewing lately- a thing that holds pins. Like the red ball thing? Exactly. I don't want to be that. So what if you just get the IV- then you don't have 2 pokes? But what if they don't get it? That could happen. But remember the pokes are quick and what if they do get it the 1st time- then it's only one poke. If you get the dart then there has to be another poke for the IV. Hmmm. I don't know. It's Ok, you can decide when you get there. What if they don't listen? That's why I'm there, to make sure they listen. Ok.

2 days before- Lily starts eating like she's going into hibernation for the winter. Lily likes food, a lot. Like her momma. All in preparation for the fact that she will miss breakfast. Looking at Lily- anyone would find it tough to believe she's ever missed a meal. Talking to Lily- conversation reverts to either what we are eating, what we have eaten and usually what we will eat next. I come from a long line of stress eaters- my dad most famously buying out an entire supply of bake sale goods the day of my brother's brain surgery- piling plates on the shelf of the payphone in the hospital lobby and alternating between work calls and update calls to family. It is not lost on my that cortisol and stress are inextricably linked and the stress hormone that it is signals the body to hunker down and keep stores in reserve- they might be needed. It's all related.

The night before- Phil announces he will take Lily in and then go into work. Lily hasn't prepared for this, it can go either way. She has a moment of stress and we tell her it's daddy's turn and that I will meet her there. That helps. Except when I walk downstairs the next morning- she is unshowered, in a robe and pacing. Dad said I could wear pajamas.  I look at Phil, who is gulping down an egg and coffee as their departure time nears. I don't eat in front of Lily on scan days- nor do I talk about food- she usually talks about it enough for both of us. We don't wear pajamas to MRIs unless they are at night. He shrugs- we both know we pick our battles. I tell Lily that she can wear pajamas- but we do not go out in public with pajamas on, which means she would have to come home for lunch. Lily doesn't move fast- but she is upstairs and back in yesterday's clothes and her robe before I can blink. Pick your battles- they are out the door and I get to work on the mountain of laundry. I also have to download all of Phillip's blood sugars- email them to the doc then print them out and go over them with him. The printer is not working- I spend an hour trying to clean the printhead- manage to get a spotty printout and look at the clock- it's time for me to relieve Phil at the hospital. Hopefully Lily is done, we can hi-5 and get on with the day. I love that he is my partner in all this. He works so hard and then tries even harder to reduce my work loads. Half the time I get pissy about things not being done my way, just because there is not a lot more I can complain about where he is concerned. I think he knows that- I hope he does. I still wonder how I lucked out with him and the funny thing is he says it right back to me- so I guess we are really just the perfect match. He sends me text updates- Lily got an IV and did great.

I beat Lily back to the sedation center- knowing if I head to radiology to find Phil- I might miss them. I catch up with the staff and one of whom we haven't seen in awhile- although with the sporadic schedule we keep- we don't always see some of the old regulars. As it turns out- she had a baby since we had seen her last- which is kind of a good feeling- I know I feel bad that I missed 9+ months in her life- but in the same respect- it means our routine has been better and we haven't been there as much. I usually tell the staff that as we leave- I hope we don't see you here for a long time- it's not because we don't like to visit with you.  They regale me with the story of how Lily stated matter of fact that she did not want the dart- she just wanted the IV and that's it. They all know Lily is a tough stick up there- not because she screams or throws a fit- but because her veins are just tough- add the steroid puffy and it's not a good time for anyone. They tell me how much they appreciate her preparedness. I find that to be ironic- and a little funny. But considering we have been doing this every few months for years and had yet another breakthrough- I will accept the progress. I know very well a bad stick could set us back a year- so I'm glad it went well. 

Lily arrives with Phil in tow- hugging him is like cuddling with a popsicle and he tries to steal my warmth- I can't believe you sit there and shiver all the time- it's miserable. The funny thing is I know it's cold down there- but my body temperature rises when I get stressed- so it usually cancels it out. Lily begins her I want to go home chant and begins taking inventory of all the wires and plugs and notices she is sans pants. This does NOT please her.  She alternates between wanting pants, having to pee, trying to sit up( a 104 pound projectile of sorts and the reason those big bars are on hospital beds) and crying about how brave she was that not a single tear escaped- as all those pent up tears run down her chubby cheeks. Phil and I laugh- now she's mad at us for laughing. It's always fun and I'm glad to have Phil there- it's not often we get to handle these things side by side and it's just nice to have him there. Lily starts to get agitated about the wires and holds up the pulse ox- I as always- say Lily Phone home? She hears Lily go home and the chant starts again. She remembers the red light on her index finger- what is this for??? She mumbles. Phil is a little rusty on sedated lily speak- so I translate and answer. Somewhere along the line my brain is forgetting to communicate with my mouth and I realize that I just explained the pulse oximeter helps them keep an eye on her blood glucose level. Phil laughs- wrong kid! I mean it monitors the oxygen in your blood. She doesn't care- she wants to go home- We catch projectile Lily again.

The sedation starts to wear off and I go to get the car- I have the fortune of getting to take Lily to lunch and snuggle with her on the couch while Phil still will put in a full day of work. I am grateful beyond words for him.  He tucks her into her seat, we wave goodbye and head to where else- Panda Express.
You are guided by silent love and friendship around you.

I have to say alot of times the love and friendship is silent. I understand that- as I reflect on all of the times I think of my dear friends and send positive wishes- yet am unable to collect the minutes to pick up the phone and call or even send a text.  At these times I am always comforted by the well wishes and thoughts of friends who take the time to share their positive energy with us on these tough days. It helps and is appreciated. Days later we had Lily's endocrine appointment and were lucky enough to bump into her oncologist. We got the all clear! No sign of tumor or metastases at this point. I take a big sigh. I feel like we are always waiting for bad news- at times it is just easier to prepare yourself for the worst. I know the road ahead is not going to be easy- but we will gladly accept an uneventful journey for as long as we can manage it.

Tuesday, July 9, 2013

Land of the Free, Home of the Brave.

Four years ago, July 4th, I got up really early. It wasn't for an early morning medication dose. It wasn't for an episode of vomiting or to administer formula via g-tube. It was to make a few dozen red, white and blue sprinkled cupcakes. Not only were we celebrating America's independence- we were celebrating Lily's independence from the chemo beast. No more stopping every few hours to mash up mitotane in a special designated mortar and pestle and carefully balance the formula to powder ratio as to not clog the g-tube. No more weekly clinic visits to flush the port and check bloodwork. No more nausea, anorexia, alopecia, emesis, or neutropenia. As Lily helped put tiny flags on each cupcake she vibrated with excitement. Still refusing to wear clothes, she sampled the goods as much as she helped.  It was a day about her. In her 4 year old world- that was all that mattered- she got a party. The promise of that party helped through some icky spots. To honor her Bravery through battle.  To the rest of us it was a new beginning. Like the first colonists- we were picking up the remnants of our lives before cancer and carrying on in a new place. A place that would never be left untouched by cancer- but would always hold the possibility and hope of remaining cancer free.

At the time, I thought it would be a great tradition- to celebrate this big accomplishment each year. Yet as time goes on- sometimes you need just that- to move on. A celebration would be more of a reminder of the tough times. I think the other 3 kids needed to move past the celebration of Lily and be part of a family unit- to not exist on the sidelines of a sibling with cancer. Because in their world- they choose to not see the alopecia and the emesis and we shielded them a lot- but they fixate on the presents and the special way Lily was treated because she was sick. As a parent, you always try to find the balance. You want to somehow create the illusion of fair in these crazy cancer infested waters of crappy genetics. Yet you can't predict when or where the little soldiers might be wounded. You recognize different children have different strengths and as we tell them- we don't love them all the same- we love them all because they are different. The year after chemo, you are picking up pieces of normal and trying to fit them into a new home. The home is a different place than it used to be- so not everything fits. You are being chased by the shadow of cancer- with more frequent checkups than a normal person while reveling in the lighter schedule than you were accustomed to. The next year presented a new battlefield, an unexpected one- the summer of diabetes and again our family force was split as we tried to manage a new medical challenge that presented itself- there were fireworks but not together. The following year- we returned to the cancer battlefield- fortunately not in Lily or any of the kids. A new type of bravery was required on my part. As the old adage goes- you don't know how strong you can be until strong is your only choice. The challenge- being the sick one. I didn't like the role- so we packed our bags and resumed our hectic schedule. We kept on marching through this year- a quiet night at home- no fireworks- just a barbeque- painting some tshirts and doing nothing. And although there was a bit of griping from the peanut gallery- they are easily entertained with water balloons, glow in the dark balloons, ice cream and the promise of fireworks another night.  For Phil and I, the normal nothingness is what we needed. The lack of pyromaniacal danger was necessary. Sometimes you learn the greatest celebration is in doing normal. There are times when the distraction of creating and organizing a celebration is needed for morale and for unity. Other times the down time is what is needed most- laughing over dinner or a silly television show or  just acting silly together. There are times when normal IS the celebration. Those are the moments I find I cherish the most. They are authentic and pure. They may not be fancy, but they are free!

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)