Many Thanks
Thanks to Daughters of the King at Christ Episcopal Church for their generous donation.Isa received two shots, one in each leg, of 763mg of Peg-asparaginase today. She kicked ass! The nurse said that she’d never seen a child so small take those shots on her own. Isa did NOT want me to touch or hold her. She sort of bit the bullet and took them. She did NOT kick, scream or cry. It was amazing. My thinking is that she had some serious support from the other side, what 4 year old has that sort of composure?
Tyler, the 14 year-old football player from Center Grove crossed over today, he battled with his relapse since this summer. I looked for him in every corner at clinic on Monday, but he was already in the hospital after being admitted Sunday night.
Another little boy, Isaac passed yesterday after not feeling well for several weeks. His parents cut his Make-a-wish trip short to come home.
If anyone wants more information on either of these two, contact me directly.
Meanwhile, I found this on another CaringBridge Site.
NO I DID NOT WRITE THIS, People sometimes think I have written things that I have clearly labeled as others writing. So I am trying to make this even more clear… I didn’t write this letter.
A Letter from Above
(from another Caring Bridge site)
Dear Mom & Dad
I know this is a rough time for you. So I will be as gentle as I can be. First of all, thank you for so many tears, particularly those shared with another that you love. They are a gift to me, a precious tribute to your investment in me. As you do your mourning, do it at your pace only. Don’t let anybody suggest that you do your grief work on their timetable. Do whatever it takes to face directly the reality of what has happened, even though you may need to pause frequently and yearn for my return. Do this with courage and my blessings.
Know that sometimes inertia is the only movement possible. Give your best to keeping a balance between remembering me and renewing your commitments to life. It’s O.K. with me if you go through minutes, hours and even days not thinking about me. I know that you’ll never forget. Loosening me and grabbing hold of a new meaning is a delicate art. I’m not sure if one comes before the other or not, maybe it’s a combination.
Be with people who accept you as you are. Mention my name out loud, and if they don’t make a hasty retreat, they’re probably excellent candidates for friendship. If, by a remote possibility, you think that there is anything that you could have done for me and didn’t, I forgive you, as my Lord does. Resentment does not abide here, only love. You know how people sometimes ask you how many children you have? Well, I’m still yours and you are still my parents. Always acknowledge that with tenderness, unless to do so would fall on insensitive ears or would be painful to you. I know how you feel inside. To be included as your child honors me.
Each time I hope it will be a little bit better. I wonder what this round will be like. She is eating more, feeling more intensely. And already tired. It feels like it has been forever that we started this process. As we get closer to the diagnosversary I get a little strange feeling.
I noticed her belly getting big and dark circles under her eyes. Her hair is still here for now. The tiny fuzz that earned her the nickname ChickiePoo will be falling out soon.
We are good. Papa & Gg went south to get some work done, while Isa and I are north to get some more chemo, PEG shots, on Thursday. I love her so much. So glad that we get to have some time together.
Tomorrow we start the next 56 day segment. I am looking forward to finishing it. Unfortunately Isa, would rather be doing something else. She has felt good for the first time in a long time and as she says,” i hate treatments.” Walking in there tomorrow will be a let-down, especially since we can’t take the whole family. Doing things together is a lot more fun. Yes, I did just say that cancer treatments are more fun if everyone goes. BUT maybe what I meant to say is that at least then you know that no one else is having more fun.
For those of you who have followed me for a bit, you will know that Jaymun was a little boy with AML diagnosed at birth. He has just crossed over due to complications from his treatment. His family has begun a program called Jaymun’s Helpers.
The best way for me to describe it is by letting his father do that. Please Click HERE to read about what the program is, and what he expects.
Thanks for reading.
DMM
Ever since college, I have imagined the sound-track of my life. In the movies, we see characters perform daily, or routine tasks to an amazing musical score. (Sometimes not so amazing.) In “real” life it used to be tough to have music blocking out all noise. BUT, once when I left the VP on Jordan a frat boy in a convertible Jeep had his music so loud, it blotted out every other sound. This was my first sound-track moment. Today, with the proliferation of headphones and iPods, the sound-track moments could occur with more frequency.
However, tonight as the sun set brightly in the southwestern sky, a brilliant orange yellow blasted our eyes, while listening to the radio playing some Van Morrison, Isa says, “Turn it up Mommy.” A lot of the time she screams to turn off the music or that she hates music. Once before she asked me to turn it up. That time was also Van Morrison.
My only guess about her choice comes from a period of time before diagnosis and chemo and cancer treatments. A time when she simply was a child. Every day on the way to preschool we listened to the same CD. We also drove from Indiana to Florida to Indiana to New York to Indiana all in a months time. And yes, you guessed it, that CD was in heavy rotation.
If music has affected my life as much as it has, I imagine that Van Morrison could play an important role in defining part of Isa’s past.
What do you think about the role of music in a child’s life?
Name one sound-track moment from your life.
This isn’t the original version. But I thought it played nicely into what I was talking about. For those of you who don’t know The Wallflowers is the band performing this. The lead singer of that band is Jakob Dylan, Bob Dylan’s son.
And just to continue the Van Morrison/Dylan connection here is another song from the album that Isa likes.
Today started out like so many others that I cannot distinguish it from any other. The four of us piled in our bed. At some point every day, in the wee hours of morning, Isa comes into our room. I hear her footie pajamas slipping on the wooden floor. To ease her entry into our snuggly fortress, I lift the covers. She deftly curls into a tiny ball and tucks her head under my chin. Papa reaches across me to touch her as if to protect us all. Our little sleeper doesn’t come in until it is almost light. Depending on the prevailing amount of crankiness in the air, she may or may not join us.
Then as our consciousness seeps back into this reality…. I woke up thinking Money wanted me to move to Maine. I told him that if he wanted to move there it would be without me, because it was just too cold there…..it dawns on us that today was a hospital day.
NEW FLU POLICY
Since October 1, 2009 the clinic, and the hospital, has implemented a “flu policy”. At first it was quite annoying, but now it sort of gives us permission to NOT go as a family. For the first 10 months,we went to every appointment together (okay, so maybe we missed one or two.) But now, we are forced to leave GG at home, which of course means that a parent has to stay.
Easy day really, just a lot of people in the waiting room, a few of them with problems that sound a lot like the flu. One Mama with her three-year-old daughter who was coming in to get a bone marrow biopsy/aspiration, to get a diagnosis. For those of you who may not remember what a BMA is like, Click here to review. I quickly told her about what to expect. That is not something that parents should walk into without knowing.
This week, it was my turn to go. In fact, I think I will just take every turn. Money has a MAJOR block with the hospital. For whatever reason, it leaves him in such a mood that I worry about his brain exploding from the stress. Today, he and Gg went out and about and had a fabulous Daddy/Daughter Day. Isa and I get along pretty well too. And with a little caffeine I get chatty with all the female nurses. Maybe Money just can’t hang with the girls. Hell, let’s be honest, he wouldn’t hang with any chicks if it weren’t for one thing. Yeah, shopping and talking, I suppose that is two, but he loves shopping and talking, just not the small talk. I wonder if this will make any of his sisters laugh. They, I am sure, will remember him talking. ; )
BLOOD COUNTS
She made her counts, ANC 930, Platelets 203—last week they were 21, Hgb 8.1. At some hospitals the numbers she received last week would have resulted in a platelet transfusion. Our hospital has LOWERED the lowest number for transfusions. NOW, she must have platelets at 10 and Hgb at 6 or 7, I can’t remember. Sometimes, if the docs think that she might be recovering based on stage of treatment, the timing for the next dose of chemo and the monocyte levels they won’t transfuse even at a lower number like 21.
CHEMOTHERAPIES RECEIVED
170 mg of IV methotrexate and 90 mg of Vincristine.
During Augmented Interim Maintenance the dosage of Methotrexate increases each time by 50mg/m². The week before last she received 206, and because she didn’t make counts last week the protocol requires them to drop back to the last tolerated dose.
DELAYED INTENSIFICATION REDUX
Yes, it is time. We are only 71 days from long term maintenance. The price we have to pay to get there is of course another Delayed Intensification, replete with Decadron,Doxorubicin-the Red Devil Cytoxan and Ara-C . This time, when Isa’s blood counts get low we will certainly pre-treat with Benadryl and Tylenol. My guess is that this will keep us out of the hospital. BUT until then, we’ll be prepared for anything.
So looks like it will just be me and ChickiePoo for the rest of the flu season.
No chemo given to Isa yesterday because her platelets were too low. This comes as no surprise. The great thing about platelets being low, is that you can tell because the kids will bruise or get petechiae. Isa had both. Her ANC was around 800, but her platelets were down around 20K.
We’ll go next Monday and see what happens. This was supposed to be her last dose, so, we’ll see what the dox say.
Today, the girls little voices were annoying me. It happens. But, then after I read what Jaymun’s dad had to write today, I decided to change my attitude to gratitude.
Please visit Jaymun’s Journey site today, send your prayers to their family.
Originally this said, ONE, but Jessica has also crossed over this morning. What a day!
For the past several days Isa has been coughing. Last night she coughed so hard she threw up. Going to treatments, being in the waiting room and getting procedures are tough, but something about the night. It changes things. Last night, Isa continued to cough so I got up with her. We sat rocking in the recliner and fell asleep, waking up when the clock struck seven this morning. I am grateful that she only has a cough and not anything worse. <a href=”http://isarose.wordpress.com/2009/03/22/go-away-cough/”>A Previous Cough.</a>
Found this little paragraph on Sammie’s website.
Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light.
Really, I havne’t meant for all these posts to be sad. But, I guess I am just hitting the sad parts. The happy parts are simply lived. Like coloring apicture with Isa today, or seeing her in the backyard in her jammies. Just stuff like that. Sorry for not sharing that with you.
UPDATE: Sammie crossed over today, October 9th 2009, 3 am her time. Thank you to Sammie for being here and being a part of our lives, however briefly.
Cancer parents trudge through spinal taps, bone marrows and hospitalizations with relative ease. Of course these things come with their own level of stress. These things bring the reinforcements of non-cancer parents, the relatives and friends, out for support. The problem with the chemo, taps, and long hours at the clinic is that they are normal.
This always sounds odd to those who have not experienced pediatric cancer.
This is part of having a child diagnose with cancer. It makes sense. You do this, you breathe you say, this “insert whatever procedure, drug or moment” will be over soon. The non-cancer people, post comments about strength and wonder how you make it through, and you wonder yourself. But really that cancer-only-stuff can be dealt with moment by moment.
The strength comes from surviving the little things.
The change of season has so many moms, or dads, changing the wardrobe from short-sleeve to long, from short pants to long, and dragging out the sweaters. Tonight I asked my little bald-headed-beauty to help me by trying on a few things. I see her naked all the time during her baths, but something about seeing this naked, little tiny thing trying on clothes broke my heart. She is so tiny. Most parents donate, sell or freecycle their children’s clothes. Last spring, I put Isa’s winter clothes back into her box. You know, the box that most parents keep around for the next season. The place you put all those great deals you found at yard sales over the summer. The clothes that are SUPPOSED TO BE BIGGER.
Children are supposed to grow. Instead, Isa has lost FIVE pounds since January 11, 2009. LOST WEIGHT!!!! She weighs 27 pounds. She’s grown a half-inch. Stop and look at your child. How many pounds have they gained since January 11. How much have they grown. Did you have to buy them new shoes recently? When her grandmother came to visit this summer, she bought her size 2, which was two sizes smaller than what she wore in January. Dragging out the box was prompted by the colder nights. The girls needed warmer jammies. Isa’s wore her polar bear jammies the day we were told that she had leukemia. Last night, she wore them again.
So, once again, instead of giving away her little summer dresses, I put them back into the box. Ideally those dresses will be given away in April or May when I switch around the seasons. But likely that won’t happen. Papa says that the only thing worse is having to throw away the box.
Imagine being a eight year old boy.
Now, think of all the activities that young boys spend their time doing—things like soccer, football, music lessons and playing with friends. Now imagine doing those things while your younger brother spent his afternoons alone with Mommy.
Families with cancer still have fun.
Think about being a an eight year old boy sleeping under blue cotton sheets with printed pictures of Han Solo and the Star Wars gang as your younger brother slept in the same room under the same kind of sheets. But you were more aware of the night.
Imagine that you had to stay at the neighbors house when you had the chicken pox instead of being fawned over by your family.
Instead of two little boys giggling and hiding under their own little bit of pop culture with flashlights, one would lie awake listening to the respirator while the other would cough, or throw up. His immune system so debilitated that he couldn’t be around any germs, especially the chicken pox. His alone time with Mommy was traveling back and forth to the hospital for radiation treatments. Treatments that had yet to be perfected for children. Treatments that left burns on his head. Imagine waking up during his first seizure, well first as far as you knew anyway, screaming. Then having to sit there while everyone attended to him, not you.
Think about being old enough to understand that something was terribly wrong, but having absolutely no control over it. Consider that your older siblings and parents were all preoccupied with a family member’s illness and your youngest sibling was too small to comprehend or even remember what was happening. Little children are inherently selfish. They can be giving and loving and forgiving too. But what is remembered is very self-oriented.
Lastly imagine wearing your best suit, and walking away from a graveyard without your brother just days after your own 9th birthday. What would you think? How would you behave? What would you expect? All the drama of the previous year had gone, but you’re left with a lot of grief, and fear. The fear that this could happen to you. That your mom could die, your dad could die, your sisters and brothers could die. That you could die.
Now consider yourself standing at the same grave 30 years later just after your daughter’s oncology appointment, the name tag still attached to her ankle. Who could die now?
Second generation Cancer.
This is my interpretation of my husband’s experience. Everyone who experiences a death from pediatric cancer has just that, their own experiences. Each family celebrates the death in their own way. Jesse’s mom just went to his grave for his birthday. Anika requested that pink balloons be released. Even within one family the associations and feelings vary from person to person. We must remember the dead, and we must remember to love the living, even as life spans are lengthening, life is too short.
All I know is that 30 years later at the grave of a little boy I never met, as I walked away while my youngest child was screaming that it was time to leave, I turned around, stepped back toward the grave then looked at my husband and said,
If it is this hard to leave him now, what was it like 30 years ago?
Walking away from the graveyard that first day, has to be one of the hardest things a father, child, mother, cousin, aunt, husband, wife, college roommate, sister, brother, you get the idea, ever has to do.
Gg decided to decorate with flowers.
Isa & Gg placing the flowers.
Everyone joined in.
To honor him, she wore his hat today.
He was only five.
The thirtieth anniversary of his death. This grave may have been visited more this year than it has in a long, long time. This post has been a tear filled writing session. Likely it is because, I am too close to being a mother who has to walk away from her child forever. From what I understand, you go on, but you never get over.
Thanks for reading.
Most children who play with other children take it for granted. Some children play in their own neighborhood with kids down the street, with cousins or at school. Cancer kids on the other hand, either feel too puny to participate, or their ANC is too low to spend much time around other people.
Today, Isa, Gg and I were able to attend an event with another family. WOW… It sure was exciting. Isa wore her mask and hat and rode in the stroller while we looked at art and listened to some music.
After all the excitement of the art festival the four girls played in the front yard for over an hour without toys. I love the imagination of a child! It might have been risky, maybe I should have washed her hands more frequently, but I prefer to believe that fun and games with a couple of friends heals as well as any medical procedure that she’s had to endure thus far.
Ideally, she won’t get sick from the over-exertion or exposure to “foreign” germs. Realistically, she runs that risk every time we do something different. Every cancer parent worries about this sort of thing, but grown-up cancer patients do things like dive out of airplanes. Check out Drew Olanoff’s experience jumping out of a plane. It keeps up the spirits to participate in life.
For those that believe in a mind-body connection there could be no other way to live with this treatment. For those of you who disbelieve, stay at home, leave life on the other side of the door. For me, I prefer to take a few calculated risks for my sanity as well as for the sanity of my daughters.
Monday we go to the hospital for Isa to have an injection through her port of Vincristine and Methotrexate. These drugs are count dependent, so her ANC must be 750 and her platelets must be over, 75K (I think.) If she makes this count then she will receive an increased dose of Methotrexate as compared to last week. Vincristine remains the same dosage throughout this phase of the protocol, but the Methotrexate increases each time.
Tuesday we then go BACK for her to kick the nurses. Well, I mean for her to receive two shots of PEG-asparaginase in each of her thighs. She really despises this part.
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
