ChickieFUZZ Challenge
Pledge money to those shaving heads ASAP. Contact someone in the local area, donate via paypal or come and throw cash at the shavers! Food, Music, Fun If you've said, "Bald is Beautiful," put your hair where your mouth is...SHAVE IT OFF! ChickieFUZZ ChallengeLong term maintenance has begun as already mentioned. Isa had some tenderness in her abdomen, and I called the doctor regarding a concern about the VOD possibly returning. The office, of course, said that they could do nothing about it without seeing her, and getting labs. Because she was displaying much energy and even riding her bike with enthusiasm, we chose to wait until her scheduled appointment next week. BUT perhaps with this heads up they will run the tests they need and be looking for other signs at the exam.
Next Monday finds us back at the clinic getting IV vincristine. She will continue to have Dexamethasone one week out of every month, Methotrexate by mouth every Monday, and 6 MP every day except for Sunday, unless, the medical staff decides to change this protocol based on her numbers. My guess is that the staff will likely INCREASE her dosage if her numbers look good. This change will obviously affect her because more chemo is more damaging to her cells.
She has lost what little fuzz she had at the beginning of January. I have considered keeping my head shaved until she starts to grow out her hair, but at this time, I am still just considering it. One thing for certain, my hairdresser would love for me to keep it short. Short haired girls get more haircuts!
Thanks for the prayers and energy. Anything can still happen, and we’re on the lookout for those things. Her lungs could still fill up with molds or fungus, she could have problems with side effects of the medications, like trouble walking. It truly isn’t over until it is over. I’d rather deal with a host of sequelae rather than have it be over.
It has been three weeks of dosing Isa with pills instead of liquids through her port. Pills that she has now learned to swallow. (I worry that this will make it easier for her to transition into illegal pill consumption in later years.) Because her pills are to be taken on an empty stomach and not following citrus or dairy, I wake her up to give them. So many times the girls go directly to bed after dinner that giving the dose just before bedtime doesn’t work.
Currently the doctor has Isa on a 50% dosage. Considering that she went through two months of consolidation, and two delayed intensives, he decided this course of action based on his years of experience. Additionally, Isa has no allegiance to any study so veering away from the protocol only affects her, not some researchers study.
Her hair is still gone, her appetite is up, and her energy level is on par with her sister’s. What we’re having the most trouble with, is the typically four-year old antics of “me too!” and the gamut of misbehaviors like, screaming when told no, faking pain, fatigue or coldness when asked for a chore to be completed.
Lont-term maintenance has ups and downs. But one of the ups is that we get closer to being off treatment.
Done, but with Flair! Love the bangs!
Tired of the room, tired of the food, tired of being tired, we are ready to go home. No word yet about the ANC count. It is a holiday, so even if lab-techs are working, they assume the right to work slower. At least that is what it feels like every holiday in the hospital. Not only are we stuck here in the hospital, but we are trying to move and be out of the house by the 30th. Well as the title suggest, it is now the first. The truck is scheduled for tomorrow. Momma should have the packing finished and then I will have to switch gears for chill hospital parent to mighty mover man. I never expect any help with moving nor have I ever had any. I am a pro at moving refrigerators, ovens, beds, couches, shelves, and such with only a two wheel dolly and muscle.
Isa is doing well, no fevers in 48 hours, eating, playing and using the toilet. Yes, toilets are important. If there is any action on her ANC today we may go home.
Wish us luck.
Even with BOTH antibiotics and tylenol Isa is running a fever of about 39 to 39.3. ( you have to translate it I operate in celsius for body temps!) Her cultures have shown NO growth for 48 hours. For 24 hours she has been taking Zosyn and Vancomycin. Her ANC this morning was ZERO. She has absolutely NO immunity right now. Amazing isn’t it. The body knows that her WBC/Neutrophils are low and it heats up.
From a doctor’s perspective this creates a problem. The fever needs to be managed, as in it can’t get too high, and it could also indicate an infection, so prophylactic antibiotics and tylenol are prescribed for these items.
Wow. Amazing body. Doctors who plan ahead. Loving Daddy staying with Isa. And a whole damn house full of stuff that needs to move.
From the message boards I’ve gleaned that patients could hover around ZERO for a week or more (up to three weeks), all the while receiving the antibiotics and remaining in-patient. OR they can be out in 48 hours. Just in case you forgot we were dealing with something similar in August >>>> Click here to read about one day of it.
Just when I think I can’t do any more or handle it all….. something else comes up.
Rather than bore you with the details just know that all of this is making me stronger. And when you see me in two weeks I will be ONE of MANY with a bald head!
MAKE YOUR PLEDGES NOW TO THE chickieFUZZ CHALLENGE. So far no one has pledged any money. How much is it worth it to you to see a bunch of people with NO HAIR IN JANUARY!! Sounds ridiculous. It isn’t. Chemo is very serious.
Today found Isa playing Wii with her dad. It is on a cart that they can roll into their room. I, however, did not step foot into the hospital. This is both freeing and difficult.
Wow.
So many things bouncing around in my head it becomes hard to sort them all out. Yes, I live in a constant state of confusion. I wonder if they captured that particular aspect of my personality in the documentary about us, airing in February?
Never-the-less (if WordPress had a word counter like Facebook, I would certainly see never-the-less.) Yes I am rambling and I have earned the right! One daughter in the hospital, One daughter so checked out that she can’t stay focused on anything, A husband who is working himself into oblivion and me in a constant state of confusion. At least I can blame it on menopause.
Back to Isa:
Another fever cropped up around 7:30, thus leading to more tylenol and a change of antibiotic, as well as some lovely blood cultures. She now receives Zosyn and another according to Papa’s text message, viacamison. My guess though is that she is receiving Vancomysin. Typically this drug is considered a last-resort. I suppose because the Zosyn wasn’t working to bring down her fever they switched to using both.
The great thing about all this antibiotic use is that she may not even have any bacteria growing inside of her. The fever could simply be caused by her body. GREAT! All those vancomysin resistant bacteria are loving these doses. And let’s not forget our friend Rocephin that she got last Tuesday for a fever that she was running then.
If it ain’t the cancer that gets ‘em it’s the treatment.
So basically, I have no idea when Isa will be getting out of the hospital.
With lots of things on our plate and not enough money to fund them, we’re going to have a fundraising event in her honor….
The ChickieFuzz Challenge.
This event will contain lots of hair.. or shall I say loss of hair! Going bald for a good cause. I’m taking pledges now. Papa & Mama are shaving their heads, and so far I’ve got a few others too. It works like this, tell people that you’re going to shave your head, (they say, yeah right, then you say, no really, and it goes on like this….) finally you say.. okay, you pledge some money and when I come back with no hair you give it to me….. do you see where this is going… then you give that money to us!
Not a dash for cash, no one has to run anywhere, and no one gets hurt doing this. IT IS JUST HAIR… it will grow back. Live life on the edge, go for skin.
Email me for details. dirtymouthmama at gmail (dot) com.
Thanks for reading.
DMM
Each section of protocol ALL 0331 have been somewhat short, eight weeks or less, but today the doctors set a new goal, the end of treatment…..May 2011.
Today Isa kissed Delayed Intensification 2 good-bye! Papa took her to the clinic for her dose of Vincristine and blood work. Today as I stood in the living room with the phone to my ear, I cried. A cancer parent spends a lot of time crying, but today, the tears came from relief. She has yet to start Long Term Maintenance, and the VOD has thrown us for a loop, but we have made it through the first parts and maybe, just maybe we will make it through the next part.
The above, written earlier today, projected guarded optimism. In hindsight one can recognize the “Wishful thinking” considering I just dropped Isa and Papa off at the ER!.
Lovely.
As veteran cancer parents, aka knowing, I waited with Isa in the car while he went in and cleared the way. Every cancer parent with a neutropenic kid knows that they get out of waiting in the waiting room. BUT not all the staff knows this. That being the case this time, Papa cleared the way then Isa walked in unimpeded.
As I type this, I received a text/tweet from @chef_lucien stating that the port accession failed. These trips to the ER can be traumatic in more ways than one. She was just de-accessed today at noon and now, the nurses there have flubbed it. No draw, no blood return. We’ve had a little trouble with this up in clinic too, but in the ER everyone gets freaked out. Deep breath. And I am here at home tethered to the electronic media just as you are.
As I’ve mentioned, platelet and blood transfusion can cause fevers. BUT the nightmarish fevers come with neutropenia. Again neutropenia is a mathematical equation based on the number of WBC. Normal is 1500 or above, today Isa rang it at 108. VERY LOW after being 1088 on Thursday. This low immunity causes a host of reactions.
One of which, fever, can be benign, simply a reaction to being so low. OR it could portend a sepsis or septicemia which can turn nasty very quickly. Hindsight has always shown us… fevers are not such a big deal. BUT, a nurse told me recently that a family ignored a fever and stayed at home. That child ended up in Intensive Care Unit for the past three weeks. Do NOT ignore a fever it can be deadly. BUT… in the other cases, it is an inconvenience. Isa likes the hospital because she gets to watch tv and eat “good food”.
Our hope >>>> 48 hours with no growth of cultures, no fevers and ANC going UP UP UP.
Then she’d be released Wednesday night. Anything other than the above and we’re looking at extra days. So until then email, text or tweet for updates.
dirtymouthmama at gmail dot com
www.twitter.com/dirtymouthmama or www.twitter.com/chef_lucien
and if you know me then you got my number for texting…..
**update***
Tuesday Morning Counts: platelets 17, ANC 0, monocytes 0 She has to stay in until her ANC starts to rise.
23k today >>>>> 237 ml of A positive platelets.
It went relatively smoothly. I can say without a doubt, I’d rather be doing something else, but if this condition, veno-occlusive disease, is as benign as the doctor said it was then I am grateful for a little time to just focus on Isa and family life.
Being with my oldest daughter and with my husband has been amazing. We all love each other so much and how easy life can derail us from those feelings. Gratitude Gratitude Gratitude. I am thankful (that if I had to be married and have kids) that I have these kids and this husband.
The color red represents so many things, one for example, seeing red, could indicate anger, or red as in one of the most common colors associated with Christmas, or in Isa’s case the color of some of her transfusions.
For the most part, transfusions continue to be something I’d rather avoid, however, Isa’s newly diagnosed condition of Veno-occlusive disease, (VOD) or the new name sinusoidal obstructive syndrome promotes platelet destruction, thus leading to, you guessed it, platelet transfusions. So technically speaking, she’s seeing yellow, platelets aren’t red.
Now I’d love to give you more details about VOD, but quite frankly there isn’t much that describes the mild form that she has, especially associated with leukemia, because usually it is a complication associated with HIGH dose chemotherapy in bone marrow transplants. BUT, it is a RARE side effect of 6-tg or 6-thioguanine. Sometimes it has been associated with drugs like Ara-C, Cytoxan and a few others. Therefore, this is quite likely CAUSED BY THE TREATMENT. Ouch.
The only diagnostics the medical staff did were to palpate her abdomen and run more blood work for her albumin and bilirubin. She did not have any MRI or any other imaging. Additionally her urine was dark colored presumably from bilirubin discharge and perhaps blood? from the low platelets.
This condition manifests with pain in the right-upper-quadrant of the abdomen because the liver starts to enlarge. The liver enlarges because the blood gets trapped inside it as the veins start to narrow. From what I understand, some of the liver cells die. This disease confuses me somewhat. For some reason the platelets in particular are at risk. Thus, patients who suffer with VOD continue to have low platelet counts. For example, after her transfusion she could have returned from 4k to 30 or 40k, but Isa only went from 4 to 10k. Likely she will continue to require transfusions until her liver quits trapping them, and/or she has enough platelets to remain above a certain level. Supposedly mild forms of this disease resolve completely. BUT.. it is unclear how long this resolution could take.
Until then we’ll be monitoring her condition closely and subsequently will spend many hours getting transfusions until then.
This week:
- Monday-Diagnosed with VOD, Blood drawn for labs, Vincristine through port, Platelet transfusion, RBC transfusion
- Tuesday-Blood drawn for labs, PEG shots one in each leg, Platelet transfusion
- Thursday-Blood drawn for labs, Platelet transfusion, RBC transfusion
- Saturday-Because the clinic is closed we will take Isa to the EMERGENCY ROOM for her labs to be drawn and likely she will receive more transfusions.
- Monday-Clinic for labs, Vincristine through port and probably more transfusions……
Can I say that this …k… sucks?
But, the alternative reason for her liver to be enlarged could be relapse, so I suppose a case of VOD is better than that! One year ago we were dealing with an enlarged liver due to leukemia blasts.
- Three Clinic visits this week
- Vincristine in port
- Isa diagnosed with Veno-Occlusion Disease most likely caused from 6 TG
- lots of fevers last week and this week which increases chances of admission
- platelets so low that she got what looks like a huge hickie on her neck and lots of bruises
- three blood transfusions so far this week and likely more
- one round of IV antibiotics
- one new baby stroller.
Dexamethasone cheeks
No I do not refer to the annoying bald kid who whines as much as Caillou, but rather a local eatery that on a Wednesday morning at 10:00 am filled its booths with aging boomers. The counter seats all taken by singles, mostly men, reading the paper. Isa, her baby and I called attention to ourselves as we looked for a seat. Many of these patrons, regular daily customers, knew that we were new. Not to mention the leopard print ‘Isa hat’ I was wearing with my husbands white karate pants. Having been stared at for most of my life, this phenomenon phased me very little.
With prompt and pleasant service, Debbie brought us coffee, pancakes and milk. After two very long days in the hospital Isa and I broke out a little to eat some sugar. Even though the cold temperatures made us catch our breath the sun shone down to warm our spirits.
For many days recently, I’ve intermittently felt teary and sad. We’re coming up to Isa’s diagnosis-versary or diagnoseversary? The anniversary of her diagnosis. But the weeks before she received the diagnosis contained pain, fevers, screaming and the feeling that something wasn’t “right”. Those weeks, the last ones in December of 2008, were a year ago.
Every family with a child who has cancer can relate to the rollercoasters of emotions. Right now, as we crawl toward long term maintenance, I feel relief, but perhaps a bit melancholy because as I look back on the previous 12 months, so much has happened.
The cold during her first admission to the hospital was so frigid I could barely breathe. Wrapping Gg up in a woolen army blanket, I actually held her on my lap as we drove in circles for the five-levels of the parking garage as we left at almost midnight. Too worried to leave any sooner, as well as staying long enough to exit without paying the huge parking fee. As a young adult walking to classes at the university I considered the cold an enemy, but as a mother who’d been cooped up in a tiny hospital room with a two children, ages 3, 4 plus a 2 yo roommate, the cold became my method of clearing out the cobwebs.
Today, for the first time ever, I told Isa, “I love the cold, especially when the sun shines like this.”
Last week, we entered the second half of Delayed Intensification for the protocol Standard-high ALL 0331.
Day 29 should have contained eight hours of fluids, and many medications, but by not making counts the onc docs pushed her back to Day 36. Therefore the cytoxan, mesna, ara-c,came a week late. Subsequently she lost every single little chickie hair she had growing. Her eyebrows are gone again.
Day 43 and 44 held two blood transfusions, a lumbar puncture, two rounds of IV chemotherapy, and a continuation of the nightly routine of crushing pills. Isa suffers from febrile non-hemolytic transfusion reaction >>> meaning she gets a fever whenever she gets transfusions so we pre-treat with benadryl and tylenol. We made this change after two back-to-back hospital admissions for high fever. Likely a these wouldn’t mask a a severe hemolysis. Blood transfusions are serious business.
Everywhere I look these days I see a little to be happy about, but also a little to be sad about. Sometimes the one thing elicits both responses. Today at breakfast, I saw an older couple sitting side-by-side in the booth. She saw me looking and said that Isa was cute, I told her I was just thinking the same about them. As she left, she said she didn’t get to see her grandchildren often. Sadness, you see the place was filled with a population that, essentially, is dying. The same as the oncology department is filled with children whose lives could be cut extremely short.
While in the waiting room at clinic on Monday, I met a family with a three-year-old child recently diagnosed with rhabdomyosarcoma. The type of cancer my brother-in-law died of 30 years ago. He was almost 6. The prognosis for this type of cancer continues to be on the more negative side. As I spoke to that family another girl, her bald head covered in a black hoodie became interested because she too was diagnosed at three with alveolar rhabdomyosarcoma, at 14 she continued her battle with a relapse.Currently the statistics show that at five years after diagnosis about 20-25% of children diagnosed still live. She had beat the odds for 11 years.
The next day, I saw a bubbly three-year-old enjoying playing with a musical toy immensely. His squeals of delight filled the room. Talking with his mother about his excitement she eventually said, that he was here for a relapsed brain tumor. The docs have told her that they will give him chemo for “as long as he tolerates it.” For the entire three years of his tiny life she’d spent countless hours on the third floor. She also gave me the code to the nutrition room, so now I can unlock it at will. Thanks to her for sure!
Considering statistics in a vacuum as my friends have reminded me is just a lesson in frustration. Science and studies are a human way of trying to accumulate “knowledge.”
A friend also suggested “to be strong in the knowledge that her soul knows about the journey that she and all of you are on.”And to live now and to be free and no longer captured by those statistics.”
And another friend put it this way,
“Every day is a gift with no guarantees, but the odds of beating cancer rise inexorably with every moment that passes. Take it from someone who’s playing the odds, 5-7-9 years don’t exist in the present.”
I love my friends.
Still, yesterday as I sat in the infusion room I heard lots of comments, being only separated by a curtain offered me that privilege. One girl coming everyday for chemo had a scan to see what position her port was in. One mother had a child, who like Isa used to do, screamed as his port was accessed. I listened to the furtive comments about Boots as she held his head, he screamed, “don’t hold my head.” but being mired in her own distractions, she didn’t listen and he swatted her hand. Isa too would shout to leave her alone and not “hold” her or what-not. BUT it is so strange to hold a child down for his own good. So as parents we also distract ourselves. Hoping to poke inch-long-needles into their chests really aren’t things we wrote in about in their baby books.
So, yes, today is today, and yes, tomorrow has its own concerns, but as the cold descends upon us, and the possibility that we might all make it through this alive sparks hope, the ambivalent feelings I have about life are just that. Feelings that come and go.
These days, I relish the smell of Isa and her snuggly warmth as we sleep together. Also, she still gets in trouble and continues to learn as “normal” children do, even though she hasn’t been normal for a year.
Thank you for reading,
DMM
Or rather ducts.
Thanks to a friend with a penchant for talking to people. A local owner of DUCTZ, happened into her office, and when she asked for an estimate, the owner, said, “For our one-year anniversary of being in business, we’ve decided to give away cleanings to people in need.”
Promptly, she called me, and emailed me. If she had used twitter, she’d have tweeted me too.
So our air ducts were cleaned professionally. This company provided a fantastic service and I would highly recommend that everyone consider having this service performed annually. The build-up amazes me, but we all could breathe easier.
Thanks so much to TK and to Ductz for really helping us out when we needed it!
Last week Isa’s ANC leveled out at 665, today it soared to 2700. Because her ANC rose above 750, and her platelets were above 75k, we started the second half of Augmented Delayed Intensification 2. 600 mg of Cytoxan, 45 of Ara-c along with Mesna and Zofran for supportive medications. Today the NP ordered a new anti-emetic that we opted not to use. She vomited last time, but this time I expect for her to sail through sans vomitus.
Today we arrived at 9:00, accessed the port after applying the LMX cream to her port area then drew blood for her labs. The tegaderm we normally use, for both the LMX cream and the port covering, caused Isa’s skin to turn slightly red so for the long-term (remaining accessed for four days) we switched to the special allergic one. We received the results quickly from the lab which indicated that today would indeed be our long day.
During our waiting period Isa started infusing fluids, (potassium chloride) to hydrate herself before receiving the Cytoxan. This drug requires fluids because it could damage the urinary bladder, therefore Mesna is usually also administered. About an hour after starting the fluids the docs require a urine test for several things, one of which, specific gravity, Isa was a bit too high. So we re-tested about an hour later, just before entering the procedure room for her lumbar puncture and she arrived to the proper level.
Local Girl Scout Troop 700 donated some creative items to keep the children entertained. In the early morning she painted a “stained-glass-window” and started on a monster stuffed animal. The back of the eyes and mouth stick on to the fabric. We’ll finish that one later. Also we played a game called Choo-Choo cover-up where we pick words out of a bag, if they match a word on our game board we can cover it up. Isa helped me, matching the word upside-down.
After the LP with morphine, versed and intrathecal methotrexate we ate some food, took a short nap, and watched the movie, Stellaluna. Right now we are finishing a bear movie and getting ready to leave. Before we leave she has to pee again. This seems like an easy task, but not always.
Thanks for reading.
DMM
Today, Isa just had her blood checked, most of it looked good, but her ANC was only 665 which isn’t high enough to start the next segment. The next segment contains some hard core killers.. Like if these drugs were people… think solitary confinement or death row. So rather than take the risk at taking her too low, too fast, the protocol states to wait. The doctor decided to wait a week.
With her numbers as they were, a week will definitely help her reach the goal ANC, but then again, I’ve seen other kids whose ANC stayed low for several weeks. The blood has a mind of its own. This sounds scary, so i will let that image just sit with you.
We inch toward long-term maintenance. Most leukemia families talk about LTM as if it were the holy grail. I’m ready to be done with the hospital all together and LTM still has hospital visits and chemotherapy. At least done doing it alone, all the packing and organizing and getting up early is tough for me to do alone.
Today and yesterday found me dealing with lots of screaming.
Is it because she is four now, and needs to be “heard” as a big girl?
Is it because she just had two rounds of steroids?
Is it because her hemeglobin is low and she needs a transfusion?
Is it because screaming grates on my nerves and she has an innate ability to bug her mother?
Even though most of the posts are written by DMM this is @Chef_lucien, Gg & Isa's papa. Here he holds Isa in April 2008, pre-leukemia. This is the man that keeps it all running around here. The girls and I adore him. 
dirty mouth mama
Chef Lucien Gregor
