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!

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Lily Kay Monkey

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