Tuesday, March 29, 2011

bullet-points for this girl who loves lists

Okay, I am certain I am going to miss something in this update but I will give a good try.

Today was the planned Care Meeting. And can I say first that I never wish to have completed college until I am sitting in a meeting with a man with a medical degree who cannot be much older than myself. Seriously, if my daughters were not so amazing I would feel like I had been just sitting around and twiddling my thumbs for the last 7 years or so.

But I digress. The meeting went well. Thankfully, I have a good rapport with the oncology team as well as the multiple specialist working on Pipers case and I was able to maintain my pride and pepper them with questions. I am really good at questioning authority, you see. Ask my father.

I'm going to have to break this down into bullet-points only because I really like a good list.

- Chemo: this is being held. They want Pipers intake to be as simple as possible as they muddle through possible allergies and causes. Hopefully they will begin again before I lose my own hair from worrying about the effects of no chemo every night.

- Her CMV levels have dropped to 1300 (remember she was at 5.5 million when diagnosed with CMV back in January) and Dr. Shores is confident that until she completes her treatment of leukemia in September that this is about as good as it gets. She will not get any more Cytovene unless her weekly blood tests show her CMV levels rising again.

- The allergist is going to do a number of blood tests as well as allergy pricks to determine what she is allergic too. He was able to tell us that she is a 4 as opposed to a 1, which means that whatever she is allergic to, it is something she reacts to more like we react to poison ivy as opposed to the immediate reaction some have to peanuts. Testing begins tomorrow.

- Dr. Siripkin is pleased with the much decreased volume of diarrhea and the erradication of blood and mucous in them. He is keeping her on "gut rest" for 4-6 weeks. Oh. My. Lord. Thankfully she is drinking the vanilla Elecare and we have been able to distract her from food thus far. Piper will continue to have TPN as long as she is on gut rest in order for her to continue to receive the nutrients her little body needs so desperately. Unfortunately he does not want to use her port for the TPN because of the sugars and possibility of contaminating her port-line, resulting in some serious side effects. So tomorrow she will be de-accessed and a less permanent PICC line will be placed in her arm. Fun times indeed.

- The MRI that she had last week came back with good results. Her spinal cord is in perfect shape. The one thing that did show up was a loss of marrow in her left tibia. This is not uncommon with the amount of chemo and steriods her body has received and it is not something that is fixable but rather something that will require a little more work to get her moving...

- ...which brings me to the final bulletpoint in tonights presentation/update. Piper needs braces for her ankles. Because of the malnutrition, because of the CMV, because of the diarrhea, because of 18 months of chemo, because of the stubbornness inherited from her mother...pick your vice. Either way, she has been immobile since Christmas and as a result is beginning to develop "foot drop" in which her feet are not in the correct position to stand even if she did have the strength. So orthopedics is bringing her some fancy-shmancy braces for her ankles as well as additional support for her left tibia area.

Because we are making such headway with Pipers energy levels and nutrition needs we are now planning to spend the next 2 weeks in the Rehab area of CHOA. She will receive intensive physical therapy as well as occupational therapy for about 6 hours a day, 7 days a week. While I am certain we will both be exhausted and I am certain the other half of this Needham Crew will be missing us as much as we miss them, Chad and I feel strongly that we need this to begin getting Piper back on track. Providing it jumpstarts her progress, she will continue with less intensive but still multiple times weekly pt and ot on an outpatient basis after she is discharged.

I've said it before and I truly mean it. I love a good plan. And now we have one. Please pray for any and all of the above bulletpoints. I have to say that while you are all asking for big things from my Big God, I am going to be thanking Him for the new and improved little girl I have been hanging out with the last 48 hours. Who knew that Piper was actually a silly and sweet one year old under all that chemo/cmv/steroids/diarrhea?

Because she is!

Monday, March 28, 2011

We are good.

I always love the hospital at night. This may be odd since the entire extent of my experience with hospitals revolves around cancer and Miss Piper, but it is true. Being an optimist about it all I would say it is because we truly love the nurses and staff here and I truly am able to rest while my daughter is being cared for these amazing friends/nurses/staff.

Sometimes when I am certain that Piper is sound asleep and secure I whisper to the nurse that I am going to go wandering and I head out towards the lobby where for the majority of the day there are parents, patients, visitors, medical staff and the lone delivery guy milling about. At night there is only myself and the night security staff...hopefully the handsome one with nice teeth who asks about Piper, not the one who whistles badly. I make the same rounds as I do when Piper and I go for our multiple daily jaunts and I mentally say the same things as if Piper were on my hip, " is that a fish?" "what does a choo choo say?" " did you just poop on my arm?" You know. Normal stuff. And then I wander back to my daughters room and settle myself in for the night. Eighteen months of being back and forth from here and our true home have made this place normal. If the nurse is a friend/nurse I will sleep soundly, not waking when she visits for vitals. I prefer to not have someone stay with me overnight because it is here in this little room with the gentle hum of Pipers sound spa and the thousands of pillows necessary for a good nights sleep that I decompress from the day. It is good. Obviously, I am an introvert...I love my alone time.

So tonight I am alone here in room 182. Like I said, it is good. I spent last night home with Linley who is amazingly bed-hoggish for being 40lbs but she sure does smell like innocence and simplicity and I will take that. After spending the day catching up at home and walking around with bare toes, I grabbed Linley from school and some ice cream and lovely together time before I headed back up this way. Chad now has Linley and prepares for a day of classes, work and Mr Mommying. I prepare for a day of wandering, playing and hopefully a Care Meeting with all of the doctors who play a part in Pipers treatment. We will soon have some options and a plan and I will be glad for that. Until then I will read, pray, be still and possibly wander off for a minute or two...because we are good.

Saturday, March 26, 2011

March 26, 2011

Piper had her MRI this morning and everything looks good. The docs didn't see anything of concern. The only thing that showed up was some scarring from the lumbar punctures she gets every month. No one has a real answer for why she is not using her little leg. The doctors think it is due to mal nutrition, but are not ruling out nerve damage which can be a side effect of one the chemo drugs she has had large doses of.

Piper's CMV levels did not drop enough to make her oncologists happy, but the infectious disease doctor is not as worried about them. The ID doc does not think that her CMV is what has been causing her to have such bad diarrhea. From what I can gather the CMV is or has played a part in her digestion problems, but the CMV levels are low enough that that alone would probably not cause her such aggravation. Her endoscopy last week did show she has colitis and the GI doc thought it may be caused by her CMV, but the biopsy showed signs of allergens. So we will be seeing an allergist during our stay this week and hopefully get some answers. Until then she is on "gut rest". Which means no food. She is getting nutrients and fluids through her line and can have a hypo allergenic formula that she seems to like ok. This sucks because we have been working for almost a year to get the kid to eat well and it has only been the last couple of months that she has been acting hungry and wanting to eat. The purpose of the gut rest is hopefully to heal her intestines and find out what she is allergic to if anything so she can start eating normal again.

Monday or Tuesday we should have what is called a care meeting with all the specialists involved in Piper's care. Until then oncology is holding off on her chemo for this week and the ID and GI have decided to hold off on her anti viral meds and continue the gut rest until everyone is on the same page. Right now they all seem to have different ideas about what is going on and what the next course of action will be. Maybe this will be the first step in getting some real answers.

We don't have a time frame for this stay. So we may be in for a while.

Friday, March 25, 2011

if you give a mouse a cookie

i know i read a pretty good amount of childrens books but surely, you have read it as well. right? it begins with a mouse who needs a cookie, then once he gets his cookie he needs milk, then once he gets the milk he need something else and so on and so onn it goes until the tired narrator finds himself wishing he had never given the dang mouse a cookie in the first place.

does it say anything about my mental state that this little book has been on my tired little mind all day? and it has. and it is how i think i can best describe today...

if you get a piper to the clinic, you have to keep her from eating anything in order to be sedated. if you dont allow her to consume anything then she will become lethargic. if she becomes lethargic she will need to cancel said sedation and get a personal invite to stay here at the lovely hospital. and this is where mommy would probably cry except i havent the energy to do so. also this is where i am wondering where i misplaced my joy of the lord...that nice little slice of strength that ive forgotten about lately.

so now you know i view our life as a kids short story. its fun like that.

tomorrow piper will have the postphoned mri, the infectious disease dr is keeping a close eye on her cmv, the gi dr is toying with options for her poor gut and intestines, her oncologist is holding her chemo and piper is just hanging out...happily, she has no clue she is medical mystery and miracle and i am thrilled with that.

please pray for some answers and some progress. so many issues, none of them simple and none of us are entirely rested and ready for this stay.

now i plan to roll over and snuggle up with my sweet linley, who is seriously the only person i know who loves to be here. strange little fancy face that she is.

Thursday, March 24, 2011

Update 3/24

Tomorrow at 11:45am, Piper will be sedated for an MRI. She is having her spine, hips and legs looked at the see if we can get to the problem with the significant immobility that she has. Especially with her left leg.

Am I nervous? Oh yes, but mostly I am hoping for a diagnosis and thus, a plan. Usually I like to be the one making the plan but in the case that I am not the one in control I just plain dig having a plan. No plan makes Susanna a very ill lady.

The results from last weeks colonoscopy on Piper came back with all signs pointing towards an allergenic reaction causing colitis in her intestinal tract. Which causes all that fabulous diarrhea and probably is a huge factor in her inability to gain weight. This also makes Susanna a very ill lady.

Are we having fun yet? Not really. Believe it or not, this isn't quite as much fun as you are imagining. But it is what is it and we just keep trucking on, thankful for all those who are supporting us.

Really, we are so thankful. And I plan to wax poetic about a lot of things another day when I am not so beaten. Hopefully a new day with some good news and solid plans and a whole night spent solidly sleeping.

Thursday, March 3, 2011

TMI and a little cuss word

That's my disclaimer. And I am NOT kidding, either folks. If you are easily disturbed by all things icky or dirty or if the thought of us uttering icky or dirty words, read no further. The good news is that we are on the upswing of things so there should be minimal icky dirty info and minimal cussing from this post on. Promise. Or semi promise, at least.

True Conversation with my newly 6 year old:

Me: so Piper, lets see whats going on in this diaper.
Linley: I"m sure its just some shit, mommy.
Me: (silence. chastised silence.)
Me: oh. my.
Linley: I know mommy, I wont say it anymore but that's not poop in that diaper.

(I know. Its not funny. And I promise I didn't laugh when Linley was in the room...I was very Mom-ish and we talked about good and bad words and I apologized for saying that bad word. But I wont lie and say I didn't get a good laugh out of that one later, because these diapers really were shit. Not poop. Just an awful lot of shit.)

Sooo...we came home from the hospital. All was well-ish. Linley began to cease throwing up just in time for Piper to begin producing massive amounts of bloody and mucosy stools, up to 25 diapers a day. (see? TMI:Too Much Information). She began medication for C diff, although all tests said no. She was taken off all milk products. She was given new much easier to digest formula for her NG feeds. Still the diapers were intense. We began Culturelle and some herbs that heal the intestinal tract and she has begun to have her "normal" chemo diapers. Oh thank you God and all the lovely ladies in my bible study who are blessing us with diapers!

Finally, she began to really perk up. She is eating, slowly gaining weight, being interested in all around her and sleeping better. So Linley, who obviously is feeling very overlooked, went out and about and possibly kissed someone with the flu. I do not know where she found someone with the flu but she did and she spent 4 days home in the bed milking it for all it was worth. Of course, Piper cannot be around all that so my mom and mother in law have assisted me with keeping them separated and both girls are on Tamiflu, one to treat and the other to prevent.

At this moment we are mending. I think. Piper has another clinic visit tomorrow to check her weight and to re access her port. There was talk of having her be admitted for what they call a "GI rest" to give her TPN but I am hoping they will not push that since she has improved so immensely the last few days. We will find out tomorrow. You should know the answer if you hear my sobbing and whining all around Atlanta.

And so that is my update. It is scarcely complete or detailed as our world is tipping a little these days but at least you all now know that we are breathing and surviving.