We have been busy doing school here at home, and about the town. We take 2 trips to CHOP in Chalfont for PT each week, and Calli has been going bi-weekly to CHOP in Philadelphia for her infusions, appointments etc...
I have been a bit more lenient in our writing schedule :) I am pretty sure I will title this years writing class as "Creative Writing." I am finding that my children write much better, and enjoy it much more when I give them a little freedom.
So last week, I gave them a writing assignment- anything they wanted to write- essay, story, poem etc...but due by Friday- the theme was "Belonging." I hope you enjoy the following poems that they wrote. Yes they chose poetry.
I think they were both very well done! We have had a lot of raw emotion here lately, and we are learning as a family how to deal, vent, and be ok with all of this. Last week, Calli and I went to the funeral service of Chris Court. It was the most beautiful service/mass I have ever been to. I am not Catholic, and Calli was confused with what to say, or when to sit, but all in all, we went away with such peace, and it was a very anointed service. They even sang at the end, the song "Let there be peace on earth, and let it begin with me......."
I have written and erased so many posts...I have a lot of things brewing inside of my head....I don't understand why a 7 year old boy scout, Karate kid, full of life child died....I don't understand why a 5 year old blond-haired, apple of her parents eye, Gabby, had to die. I don't understand why My husband's father had to die...I could go on and on. This is normal, we may never understand fully, until we see Jesus. It is that simple.
People have their formulas and explanations, and judgments, of the whys.....and the how to's...I just think it is simple. I think God wants us, wants me, to become like a child, and just trust fully, that He has got it all figured out, so I don't have to. There is a blessed calm, and peace and rest when I give up trying and asking and wondering why.
Tomorrow, Mike and I will be taking Calli down to CHOP for her 4 hour long MRI. This time, they are putting her to sleep with an anesthesiologist.
Please pray for Chris Court's family. This courageous, 7 year old warrior went to heaven tonight, and is with Jesus. His family could use some extra love, prayers and comfort sent their way. Please pray for peace to envelope them.
LIVING HOPE Could you see the life in her... As she danced to the beat of the band? Did you see the fringe of her moccasins Waving wildly as she moved?
Could you see me beam... As she smiled at me? Did you look into her eyes... tranquil as a turquoise sea?
Did you see the light Shining through her? The life inside her is growing... Loving being free.
You should have learned a lesson, If you saw her last night at all... She laughed She danced She smiled Everything to live for Not a complaint at all
Thank you so much for everyone who came out and supported our family last night. Most of you were strangers, and we are so thankful for your love and support. Thanks too for all who helped organize, cook, set-up, serve, and the businesses and people who donated baskets, supplies, gift cards and food!
We especially want to thank Alison & Joe Dittmar, Sue & Ken McDermott, Laura & Alex Kozdra, Sandy Nulf & Brendan mcDermott, Ellen Nulf, Jadwega Healy & Dot Dittmar for helping organize and run the night.
The Other Brothers band- you rocked, seriously, you are great! Caitlyn Landis, you are so talented and the cake was awesome- just perfect! Danielle De'Ellia- you made an awesome flyer & Tickets- THANKS SO MUCH!!!
It was wonderful to see old friends, and family that had never even met Calli...and it was good to see family and friends who have!
PLEASE PRAY for our new friend and fellow warrior Chris Court- 7 years old, we saw him last week at Physical therapy, and then yesterday at clinic, and last night he was admitted to the PICU at CHOP. He needs Jesus to step in and heal him. He has an inoperable brain tumor, Grade III Anaplastic Astrocytoma (what Calli's tumor was before it became a Gliblastoma) but it is on his Brain Stem. Please, Please Pray- don't just think it, don't just say you will do it- but really do it this time.
Check out these lyrics- please read thru them if you can stand it.....
Give me a head with hair, long beautiful hair
Shining, gleaming, streaming, flaxen, waxen
Give me down to there, hair, shoulder length or longer
Hair, flow it, show it
Long as God can grow, my hair
Let it fly in the breeze and get caught in the trees
Give a home to the fleas, in my hair
A home for fleas, a hive for the buzzing bees
A nest for birds, there ain't no words
For the beauty, splendor, the wonder of my hair
I want long, straight, curly, fuzzy, snaggy, shaggy, ratty, matty
Oily, greasy, fleecy, shining, gleaming, streaming, flaxen, waxen
Knotted, polka dotted, twisted, beaded, braided
Powered, flowered and confettied
Bangled, tangled, spangled and spaghettied
They'll be ga-ga at the go-go, when they see me in my toga
My toga made of blond, brilliantined, biblical hair
My hair like Jesus wore it, Hallelujah I adore it
Hallelujah Mary loved her son, why don't my mother love me?
What's with hair anyway?
There you go! So some people put a lot of weight on hair, There are so many more songs out there about hair too. My husband always told me that if and when I cut my hair short, he would divorce me. Of course he was not being serious, but he was trying to tell me that he HATED short hair. I did cut my hair very short- and I will say that was the worst year of our marriage :)
high school 1993 a sophomore at North Penn Senior high, I was so sick of people putting so much emphasis on other's hair...so I cut mine short the summer before school started- I mean pixie cut short. It looked really cute.
First day of school- two seniors called me "Chemo." The thing is, at 15 years old, I did not even know what that word meant. "Chemo," was my nickname for two months. I was made fun of so badly and haggled so much, that I decided to leave school and home schooled myself for the rest of that year.
The following year, I came back, and now my hair was a bit longer...I went to a basketball game, and one of the guys I was sitting next to, told me, "Now let your hair grow out, don't ever do that again." I guess they told me....I did not cut it again...well at least not for a year :)
Rebellion
The thing is, I rebelled...but in a good way. I rebelled against what the norm was, what was expected, what was comfortable. My life was such a mess anyway, and my concerns were not on boyfriends, or the mall, clothes...make-up or grades-like all the other kids at school....I could care less what people thought of me then, so I rebelled against their protocol and I walked my own path, and I cut my hair.
I AM MY HAIR -really?
Last week, I was beginning to get that rebellious feeling again, but in a good way..against society our society today, not in the 70's with the hair song, but now- Lady Gaga, wrote a song- that seriously makes me sad. I mean, I get what she is saying about her wanting to be unique by living vicariously through her hair and not have people make fun...but really??? Here are some of the lyrics- it just proves my point...it a weird but different way that people are too focused on hair, their hair, our hair....
I just wanna be myself
And I want you to love me for who I am.
I just wanna be myself,
And I want you to know, I am my hair.
I've had enough, this is my prayer, That I'll die living just as free as my hair.
I've had enough, I'm not a freak,
I just keep fightin' to stay cool on these streets I'm as free as my hair.
I am my hair.
So she IS her hair. she says it like 50 million times in the song. I disagree- I think she hides behind her hair. (All you Lady Gaga lovers out there- don't be haters of me, just try to see what my point is- or don't)
I am that mom that would go bald
When Calli got cancer and was losing her hair, I knew I would shave my head. Wouldn't you? Maybe not, probably not. Why? Ask yourself why. Seriously ask yourself. I told Calli I was going to and she said no. What? Why not? You can't be bald alone! Calli would not let me, did not want me to- it was her battle, her war, her loss...she owned it, and she wanted to look at me and see normal. Two weeks ago, she looked at me and said, "When I look at you, I am reminded of what my hair looked like."
DAILY REMINDERS
When she posted the poem she wrote yesterday, my heart was ripped inside out.
It was very hard for her, after her hair was gone....she struggled and still struggles to feel beautiful. For years and years the first thing anyone said to her was "You have the most beautiful hair." You are so pretty, your hair is so curly etc....all things were about her hair, not her personality, not her spirit.
I thought, to a degree, that she had become comfortable with being bald, after all she lets me post pics of her on here, and rarely, will venture out without a hat, or a scarf.
Yesterday something changed
She looked at me, and told me that she was beginning to resent my hair. It was providence, it had to be, I was also resenting my hair, Each morning I woke and felt extremely vain washing it and watching as my tendrils curled. I began having dreams about shaving my head, over and over again dreams came at night and I was shaving my head. It was funny, because she keeps having dreams about having long beautiful hair again.
So last night, she asked me... I wholeheartedly said yes.
She asked Mike, he agreed....
and even Aidan joined in....
while she shaved our heads.
It was a wonderful bonding experience.
You may disagree, but frankly we don't care anymore. We had really good reasons....
CALLI- our precious sweets- you are not alone, you are not the only one that is bald in our home. Walk tall, take off your hat and be free, you are not the oddball- we ALL ARE!!!
Calli stepped out today without a hat, or a scarf and was so beautiful and confident- her grandmother even said she sounded more chipper on the phone :) It was however a very cold rainy day, so tomorrow we may wear a warm cozy hat!
SOCIETY- WE ARE NOT OUR HAIR!!!!! We are human beings with spirits and personalities and yes some of us live that through our hair, or clothing, but it should not be the focus! The focus should be the person. There are kids that will not look at Calli. How do you think that makes her feel? People stare at her all of the time, and I know they are curious, but I just want to stick my tongue out at them sometimes, but I smile and pray a blessing over them instead. So now they can stare at me :)
AWARENESS- I had so many people acknowledge today, all strangers - they looked at my head, looked at my gold & gray ribbons, and then at Calli who was confident and bald today- (yeah!)and they knew- they are now aware- a child has cancer.
September was Childhood cancer awareness month...how many gold ribbons did you see in stores? Did you do a 5k, or pick up a yogurt or cereal box with a gold ribbon on it? I want to make people aware of the battle our children are facing and that more funding, and more research must go to childhood cancers along with the others that we are most aware of. Calli said that she never knew kids could get cancer until she was diagnosed.
Speaking of Childhood Cancer awareness month- THANK YOU THANK YOU THANK YOU to the prayer group of women at Franconia Church- you know who you are, The Office workers at I.T. Landes & Son, Susan & Ali Landes, Ellen Nulf, Laura Kozdra, Alison Dittmar & Jadwega Healy for making so many bags for the parents and children at CHOP. Thank you for stepping up! We delivered over 200 bags in the month of September!!!
I made a nice video of our hair shaving party to this song :)
-called I AM NOT MY HAIR- by India Arie and Pink helps her sing it too :) We think it should be played as much if not more than Lady Gaga's song- it sends a good message-
Kind of cool huh? Who knew? So, I just figured out how to look at the pageviews of the blog by countries :)
Calli my sweets, do you realize that you have traveled to every continent in the world, except for Antarctica- but I did not think that you wanted to go there anyway! I knew you would be a world traveler, just like you said :)
It was a very fun night on Monday, when we celebrated Dan Gun day at Mark Cashatt's TaekwonDo. The event included a short play, telling the legend of Dan Gun, a pattern competition, and Korean food & treats!
Aidan got first place in his division for the DAN GUN PATTERN COMPETITION
We were so proud of Aidan, when he won first place for his division!!! Here is a picture of all of the 4 first place winners and some of the judges.
Aidan gets his name forever engraved on the plaque!
Aidan is so dedicated, and is learning so much, including compassion and humility. He had to compete against one of his very best friends the first round, and when he won that round, he sat down and had a sad look. Afterwards, I asked him why he looked so down, and he said that he felt bad his friend, a higher belt, had not won. He was sad for his friend. I will add that he was the lowest belt in his division, and won first place.
ON THE ROAD AGAIN
So, many of you are probably wondering what is going on with Calli. After her MRI, Mike, Calli and I made the decision, a very hard decision, but together we decided that she would continue with more chemotherapy at CHOP, but with a few tweaks of our own.
Her doctor, suggested we follow a phase II trial from DUKE, combining Avastin, Temodar and Irinotecan. Three Chemotherapy's- yuck! They have had some promising results, but promising for them is different than promising for us.
So, we took several weeks, prayed, researched and talked about our options. We asked many questions, and finally ruled out Irinotecan. Irinotecan makes you lose your hair....Calli's is just starting to fuzz back, and it was very important for her to keep what little hair she has. Secondly, Ironotecan has majorly dehydrating side effects, and Calli is not really eating much of anything now anyway, and we were not willing to increase the risk of more hospital stays due to severe dehydration.
After some deep digging, I found several supplements that have been successfully tried with Glioblastoma in studies published by doctors in Italy, Japan, Canada and Brazil. I printed them out,and took them to Calli's doctor. She is totally willing to try anything, and will watch Calli closely for any ill effects. So, we are trying major high doses of Vitamin D, Borage Seed oil, Evening Primrose oil, Flaxseed oil, Curcumin, Fish oil, and melatonin. On top of that we took her to a nutritionist who put her on a very restricted diet and added a good multi-vitamin, some other supplements as well as greens, probiotics and herbal bitters to detox her liver.
Unfortunately none of the supplements are covered by insurance. The FDA is currently doing trials on most of the above mentioned supplements, but until approved for efficacy, will not be covered.
So, we are making bi-weekly trips to CHOP in Philly for infusions, and weekly for blood work. She also has started physical therapy again. She has major yucky days, and can hardly keep things down. We had three of what may possibly be the worst weeks yet- she was just so sick. We all believe it was just a combo of radiation side effects peaking, the chemo combined, and the detox- all make you sick and yucky.
Today she is great, she has not vomited since Friday, and she had an infusion yesterday- so this is a great day!
Please continue to pray for her energy, strength and for her to eat!
FUNDRAISER
My Aunt and cousins are planning a fundraiser for Calli- you can find the info to the right of this post :) Here is the Flier (Thanks Danielle!!!)
SCHOOL
School? oh yes...school. We started school slowly in September and are full swing now in October...sort of. Listen, we have days where is seems like nothing is being done "school wise," but my children are learning invaluable lessons not taught in a classroom. Take yesterday for instance...
We were sitting in clinic at CHOP from 9-2:30- and still had not gotten her several hours long infusion....seriously that is a totally normal day. Mike- a Music therapist came and gathered some of the kids, and they totally jammed for an hour in the corner of the clinic. I cried, it was beautiful to see the kids smile, to see Calli and Aidan seriously playing and then crack a smile- they were so awesome...here is a short clip
and this one too...sorry it is sideways! it may not sound like much to you, but it was beautiful, and they literally played for an hour- it was a nice way to make waiting more palatable. Music is energizing, uplifting, sobering, calming...you can find each emotion in music. Thank you Mike at CHOP!
So, you see, we had music class :) after 5 1/2 hours in the clinic, we finally were brought over to the day hospital for her infusion. I was able to read some history, science & literature to them for two hours...so that was school yesterday. We have to have a new normal. Everything will get done. I guarantee you Aidan can tell you all about Ptolemy and the Geo-centric system, and the Catholic church and the dangers of believing things from people at their word. Perhaps they were right before, perhaps they are the most profound scholars and preachers, of their day....but just because they have been right before does not mean they are always right....that is dangerous ....
It IS JUST A WORD NOT A SENTENCE
Mike's mom had been ill the whole time she was helping us, she put herself last, and Calli first. Each day she drove with us,and spent long hours and days with us, she was sick, in pain, and tired. She never uttered a complaint, never uttered, "I need to rest," never let on that she needed surgery....never let us know.
As I sat next to Linda in her hospital bed, she asked, "Why now, why does this have to happen now." I told her that I don't know why this is happening now. I just don't know everything and am not going to pretend to. I don't know why Mike's Dad died from cancer so young, I don't know why Tiffany had a stroke at 9 years old, and I don't know why Calli got cancer, and now she is sick, and needs surgery, and .........
I know this, I am not going to get angry at God, I kind of feel like a little girl, just trusting, my Father, not understand a bit of the world around me, but just feeling secure and Hopeful that He is gonna take care of it all. She agreed. We agreed that we do not understand what is happening, but to trust God in yet another trial- That night, she got 2 units of blood to prepare her for surgery the next day.
The next morning, I had good thoughts towards her, and as I walked into her room, I just felt peace. She is gonna be ok, and she is gonna be well, she is gonna be good. Her sister Mary and I walked along side of her hospital bed, and as we came to the OR, I leaned down and prayed with her and kissed her teary cheeks. We both were tearful but not in fear, but in love. I love her, I love her humility, her willingness to give all and take nothing back, I love her stubbornness, her quietness, her grace, and poise.
When the doctor came in, and told us she had cancer, It was just another word. I know that it sounds weird, but it is just a word. Hers was caught early & was contained, and they believe that they got it all out. I was joyful and thankful, to God for preserving her life.
Yet, I my mind wanders.....aimlessly at times, thinking deeply about our life. Just in the last few years, so much has happened...Mike lost his father- in the prime of his life to cancer...our niece Tiffany had a stroke at 9 years old, Our daughter, Beautiful Callahan, diagnosed with a horrible horrible cancer, and now his mother....and I am not mad...I don't understand it all...I don't even think I want to..I leave that up to God. He knows.
I know and trust that God's thoughts towards us are good, of peace, and not of evil, to give us a future and a HOPE- A LIVING HOPE!!! FOR LIFE- and abundant life!
When thinking of a "theme" for Calli's fundraiser, we asked Calli what she wanted, she said, "Mom, I have a LIVING HOPE." Yes she does- GOD is alive- he is her LIVING HOPE, and she is herself a LIVING HOPE!
This song, I just can't stop listening to it- I hope it blesses you.
I don't understand Your ways Oh but I will give You my song Give You all of my praise You hold on to all my pain With it You are pulling me closer And pulling me into Your ways Now around every corner And up every mountain I'm not looking for crowns Or the water from fountains I'm desperate in seeking, frantic believing That the sight of Your face Is all that I need I will say to You It's gonna be worth it It's gonna be worth it It's gonna be worth it all I believe this It's gonna be worth it It's gonna be worth it It's gonna be worth it all I believe this You're gonna be worth it You're gonna be worth it You're gonna be worth it all I believe this You're gonna be worth it You're gonna be worth it You're gonna be worth it all I believe this
For those of you who are worried...don't be! MRI results are in & we were not worried of what it would show, or not show. We were prepared to see swelling and tumor breakdown...which there is! Right now the main tumor is breaking down and has some holes in it. There is a lot of swelling below it-due to boosts of radiation & breakdown. The tumors above look as if totally gone, but she moved so on most slides nothing is there, but they cannot say absolutely, because when you move during an MRI, it clouds the view. There is absolutely no spread, growth or anything in her cervical spine or brain.
Today Calli performed with the One Voice Handbell Alumni Choir in a wedding. They really did terrific, considering they just saw the music last week for the first time, and rehearsed the songs only 5 times! I will post a video of ODE TO JOY- my favorite of the day!
She is quite exhausted still :) Each day she is fighting back throwing up. We are really trying to get her to eat as much as possible, but nothing is appetizing when you feel sick! Blech! I have been trying to give her supplements and vitamins, and seed oils to stimulate her adrenal glands and give her some sort of nutrients. We learned the hard way after several tries, that she has to eat something substantial before even trying to keep the pills in her stomach!
She is quite determined though...Friday morning, just as we were leaving to go to Bell Choir, she got sick, and lost all of her vitamins and breakfast. She recovered and was determined to still go to bells. We were only a little bit late :)
We were given a very nutritious and organic protein drink from a friend & she actually likes it! It is called ORGAIN. So far, she likes chocolate and vanilla, and the first ingredient is NOT sugar :)
So far, I have collected 34 bags for CHOP dads & moms! Thank you to those who took time out and effort to help some others. Aidan and I made 30 ourselves too. On Monday, I will take them all down and give them to the Child Life Workers on the Oncology Inpatient unit to give to the parents that are there now. THANK YOU! I am hoping that some people would want to make the NO SEW fleece blankets for the kids :)
Here is part of ODE TO JOY that they played today :) Calli is second one in :)
We arrived at CHOP at 9:30 for our appointment with our doctor- waited two hours to see her (those neuro Oncologists- are very busy ya know), then went to Penn for her appt with her radiation oncologist.
Her neur oncologist secured a 7 pm appointment for Calli's MRI- hoping to finish it. This time- with NO meds! She can do it- we both encouraged her and believed that she could do it. They had scaled it down to a little over an hour, by eliminated some films, and they promised she could watch a movie!
She has never been allowed to watch a movie, and her doctor said, "WHY NOT?" I guess scans of brain include orbits- but they are not concerned about her orbits, so she could watch a movie!
By now it was 3 pm, and neither of us had eaten, she was exhausted and she went to Oncology's day hospital where they gave her a bed to lay down.....All she wanted was top ramen- all day, was asking if I could find her some. They don't have it here in the hospital, I asked, I went to Penn and asked them..nope, finally went to the gift shop in the hospital and they had it! Who knew?
After a snack, she slept for several hours. Then they woke her to....stick her again- we are losing count, but we believe it has been 12 sticks for IV's in the last three weeks! Nurse Amy took her time, and got a good vein. They could take her blood from that stick, so as to save her another one!
After resting we went to the MRi suite and got changed, picked a movie and waited our turn. She was happy, because the movie is thru goggles which totally block out all vision of the long skinny tube she is in...she also has headphone which block most of the jackhammer noise. All settled, relaxed and watching a movie...they start the test and....THE MACHINE BROKE! OYE VEY!
We just laughed, I mean really? What else could we do? So, off the table, back to the gowned waiting area, where all the other kids are waiting. They tell us that she has to wait another half an hour until one of the other machines opens up. half hour- you got it! She popped in a movie and in no time we were putting her on the next MRI...one glitch they mention at the last second...you cannot watch a movie on this machine! UH OH. Calli of course, is not ok with that, and starts to cry and is now scared. We talked her into at least trying it, with me standing holding her foot the entire time, and giving her a mirror so she could see my face and I could see hers. She agreed.
Back on the table, into the tube and she freaked out. Could not do it :(
So, they say that the next table would not be ready for another hour and a half, but she could watch a movie on that machine. We chose to wait, we had already been there all day and by now it was close to 9:30. We watched a movie and just as I started to relax, I remembered that I had parked at PENN! UH OH, I needed to move my car to CHOP, or I would not be able to get it out! So, I went across the hospital, stopped at McD's got her a cheeseburger, me a coffee and walked across the street to get my car. As soon as I pulled into the CHOP parking lot, Calli texted me that she wanted nuggets :)
After parking, I went all the way back across the hospital for nuggets and a shake for Calli. She ate just a bit, and then it was time to go! Laughing and relaxed, all the nursed and the Resident were all saying sorry and how patient we were...I kept saying that God was definitely trying to teach me patience :) We got in the machine, she did swimmingly! YEAH CALLI!!!!!
We were all done, got changed keys in hand and walking out the door when....STOP, they forgot to do one of the scans! Really? We just busted out laughing so hard, what else could we do? Right? So she got changed again, we all got screened again, back in the machine, movie back on and after about 15 minutes, she started saying in an unsure voice, "Mommy?, Mommy?" I was sitting in a rocker about two feet away from her, so I got up and held her foot,and rubbed it back and forth to let her know that I was there. The nurse said over the intercom that she had 47 seconds left,and she did it! Apparently the credits were rolling on her movie and she did not know how much longer it would be :)
So we got home, around 1 am- I think, I do not even remember.
It was a long, busy, but good day :)
Calli likes this song by Jamie Grace called hOLDING on
