It was one year ago today. I was still awake. I walked from joey’s room towards the rose gardens around this time. he was sleeping, and I knew nothing was going to happen right then. I had a friend whom I had just met with me and we silently approached the statue of St John Paul II and placed a candle she had brought for me. Together we prayed and lit this candle. The only words I could mutter were “Lord please let this work”. From there we went to a secluded corner of the garden. An outdoor chapel. We sat down, and she prayed with me. I cried. I was terrified. Would the donor back out at the last minute? Would these new cells engraft? Would he succumb to infection? Would this finally be the answer we have sought for so long, an end to this awful disease that had been ravaging my son?
We slowly started back. I hated being away from Joey but I needed this time to gather my thoughts and the nurses promised to call if he woke. I stopped at the gate. “There is no Profit in Curing the body if in the process you destroy the soul”. Please God don’t let this destroy his soul, his will to fight. I knew the worst was yet to come… but the promise of new life was that day. It was the start of day 0.
It was 1 year ago TODAY that a stranger was preparing to go in, have a needle inserted into her own bone, and marrow extracted out. What was she thinking, what was she feeling? Was she nervous? Scared? Excited? Would we ever get to know who she is?
Since that day we have had our ups and downs. Joey faced a bad run with Graft Versus Host Disease. 2 infections got into his lines. He had surgeries, medicines. He trick or treated in a hospital with a mask over his face, and a wagon as a ride. He spent Thanksgiving confined in a hospital. He had surgery to remove an infected line 2 days before Christmas, just so he could be home Christmas morning.
Since that day he has grown hair, and gotten his first hair cut. He has gone on his Make A Wish trip. He has grown and thrived and learned so much.
He has SURVIVED!
Today I wonder if his donor is thinking about that day, 1 year ago. Is she thinking about Joey? Does she want to meet us one day? Does she know how precious she is to us?
Once again I find myself in tears. This time they are tears of thanksgiving. Thank you GOD for sparing my son, thank you angel donor for saving his life and being selfless, thank you friends, family, and strangers for standing beside us in prayer and thanksgiving from the beginning, to now. And Thank you JOEY for being the wonderful fighter you are, for never giving up, never losing your will to fight, to live. Thank you Joey for being YOU, my SUPER JOEY! I love you baby, with all my heart. I am proud of how hard you fought. You inspire me. Happy Marrow Day, Happy re-birthday.
And to my David, thank you for having a heart of gold, and helping take care of your sister. For having the strength and courage to understand that I didn’t leave you because you were less important but because Joey needed me more.
And sweet Melanie, thank you for being the light in the middle of the storm, always finding ways to make the tough stuff easier. For being willing to be tested as your brothers hero, and for crying when it wasn’t to be your marrow that he could use.
Its been one of those busy few months, where you forget dozens of things! So I apologize for the lack of entries here… I forgot.
So Make a Wish was everything we could have dreamed of and more. I can not even begin to tell you the magic that Make A Wish gave to our son, to our family. It was amazing. From the limo arriving to take us to Disney’s Paradise Pier Hotel, to Joey’s first ever dip in a pool. From watching the shows from the room, to walking through the gates into the Disney Parks. The character meals, the private lunch with Mickey Mouse where he played connect 4 and colored with Joey. The trip to Knotts Berry farm where Snoopy met with Joey and gave him a stuffed Snoopy to keep. Medieval Times where Joey wasn’t sure whether to scream or sleep or laugh (mostly scream and sleep). and then Universal Studios where Joey loved the Curious George Water play area. And finally the Limo ride home. it was amazing, and I will never forget it.
Now, summer is over, school has begun, and I have sent my little girl off to public school. Now I prefer to homeschool her but she needs speech. Badly. And she loves it… so far. but I sure do miss sleeping past 6 AM! LOL
David is settling back into his school routine, Joey is settling into some semblance of normalcy. I feel lost.
So much of the past few years I had one major purpose… to bring Joey through this. And now… hes through it. So now what? This is a question i will need to answer over the next several days and weeks. I know I want to advocate. I want to keep fighting for these amazing children who need a voice. I know I want to find ways to give back. I just need to find something.
Right now, we are preparing for Light the Night this Saturday. Looks like we won’t make our goal but we will still make a dent. Albiet small. It counts. Everything counts.
Joey’s Fighting Warriors are never done… we will keep pushing forward. For histio, for cancer, and for children.
Yesterday we had our Wish Presentation… the big reveal. Up to this point all we knew was the dates and that we would be at Disneyland. The big reveal was where we got the details, the itinerary.
We arrived at Five Guys Burgers and Fries at 5 PM to find a table covered in a Disney table cloth, with Make A Wish Balloons and a Mickey Mouse Balloon. On one of the chairs was a Disney Backpack filled with Goodies for Joey. Markers, crayons, coloring books, a buzz lightyear computet type thing, a game. Stuff Joey would love. As he opened the backpack and took out the toys he wanted each one opened. So while he played with his new goodies, our Make A Wish granters sat down with me and went over the Big Wish.
Monday morning we will be picked up at 3 PM by a limo and taken to the Disneyland Resort where we will check into our hotel to begin our magical trip. This day will be spent settling in, enjoying the pools, the big waterslide, and Downtown Disney. We will choose our dinner this night, and settle into bed after setting our character Wake up Calls. Most of our meals we will be deciding on our own, courtesy of Make A Wish.
Tuesday morning we will rise bright and early and enjoy a breakfast of our choosing then head into the parks for the first of our magical days. At noon we have a private meet and greet with Joey’s very favorite, the one and only Mickey Mouse, in the Wish Lounge (a private room for Wish Families to enjoy during their Disney trip). The day will be spent enjoying all Disney has to offer, and we will spend the next few days making reservations for any dining we wish to have on our trip. That night we will enjoy the fireworks while we celebrate how far our little man has come since the day he was diagnosed. Then off to bed to dream more dreams
Wednesday morning we will be dining in Goofy’s Kitchen for breakfast, meeting so many wonderful Disney Characters at this buffet style, kid friendly Restaurant. The its off to the Parks again for more fun filled time. I anticipate cotton candy, rides, and lots of smiles (and tears from mom). We are thinking of doing World of Color at the end of this night.
Thursday morning after breakfast, its off to Knotts Berry Farm. We will spend the day playing with Snoopy, discovering more magic, and just enjoying the time as a family. I am sure Joey will love Camp Snoopy and I know David will love Silver Bullet again. And that evening we walk across the street to Medieval Times for a Dinner and Tournament with no silverware! Afterwards the driver will return to escort us back to the Disney Resort where we will drift into sleep and dream of dreams come true.
Friday after breakfast we will be whisked away to Universal Studios where we will enjoy another fun filled day, this one full of total surprise as none of us has ever been there. Our chariot will whisk us back to Disney Resort to have our final night of sleep in this magical wonderland of dreams coming true and wishes being a reality.
Saturday Morning will be our final morning in this place of happiness and magic, and at noon a limo will arrive to carry us home, happy, exhausted, and filled with magic.
My Joey… you have earned this week of magic. Melanie and David, you ahve as well. My lovlies, you have stood strong in this battle and I am so grateful to make A Wish for bringing a Light to the end of the tunnel for all of you. I am so grateful to Joey’s medical team and to God for carrying my Joey to the health he is in today. From the brink of death to the doorstep of magic and wonderment that we will see in the coming week. I look forward to sharing pictures with all of you!
So much changing and most of it wonderful. My mom had her 2 back surgeries and is recovering. My sister has her health issues but keeps her spirits up most of the time. And my kids… they continue to be the light of my life, the skip in my step, and the beat of my heart.
So much to share, so much happening. I will share today on each individual child, then on the family as a whole.
David is still facing a lot of anger. He’s angry at his biological father for not even trying to see him (at 9 he has figured it out). He is angry that his brother has been so sick for so long and that mom was gone so much. I also know that with a lot of love, compassion, and patience his anger will subside. but it makes it rough at times to get along with him on the best of days because he wants everyone else angry too.
So in trying to help him, me and him have been doing some one on one projects. Science experiments (his favorite) and a recycling project (that he wanted) and some video games. its a long road with this, he is still worried mom and Joey will go away again. But we are getting there.
Melanie continues to be the diva of the family. But she is getting to the point that she does so lovingly most of the time. Her biggest thing right now is “girl time” where we do her hair, her nails, etc… This is bringing me and her closer together and strengthening the relationship that has been strained by my absence. In fact as soon as I am done with this entry, I will be doing her hair and nails for todays event.
What can be said here other than how well he is doing! His Doctor came back to City of Hope and we saw him Tuesday. He feels he is progressing remarkably well and has cut down on how often we have to go in. Now instead of going every 2 weeks with labs every 4 weeks, we will go every month with labs every 2 months. This is a good thing, its a sign that he is getting healthier, stronger, and life is returning to a more “normal” state for my little monster. he is still very demanding and very picky. I often have to pay him to take his meds. Lucky for me he is cheap! His steroids were increased a few weeks ago, so hes been a bit more moody and a bit more restless. but slowly we are getting there.
All 3 kids:
Recently I told you about the butterflies they were raising. Those butterflies made their coccoons, and emerged. 2 of them died… one while making its cocoon and one after it emerged, but the 3 that survived were gorgeous. The kids loved them and got to hold them. Then we released them to fly into the sky. A butterflies like is only 2-3 weeks. I do not want my kids going through more loss than they already have so we kept them for a short time and let them go be free.
A few big announcements here. First, today is the big reveal on Joey’s Make A Wish trip, which we leave for on Monday. We are excited. Joey fought so hard, so long… this wish is just the perfect ending to a long, strong, courageous battle. I will reveal details in my next entry.
And our family has created a team for Light the Night. We will be joining with the Leukemia Lymphoma Society in Joey’s honor to Light the Night and take steps to cure cancer. yes, I know Joey does not have cancer, but I also know histio is related to Leukemia. And LLS has supported our family from diagnosis. We WANT to give back. If interested in Joining us, or supporting us please go to Team Joey’s Fighting Warriors to sign up or donate. If we raise $10,000 AND find a pig, my sister has agreed to kiss the pig! If we can’t find a pig, we’ll find some other animal for her to kiss! Thank you Sparky for agreeing to kiss a pig if we meet our goal!
And finally, in our big announcements… my birthday is coming up on the 25th. All I want for my birthday I have already gotten… my son is a survivor (and I tear up everytime I say that) so for my birthday this year, I am asking for something else. First, a donation to our Light the Night Walk. And second, please donate a toy to a local childrens hospital in Joey’s name, specifically the Hematology Oncology units. If you don’t have a childrens hospital in your area, ask them to give it to their pediatric patients. I don’t want anything but to make kids like Joey healthy, and happy. or maybe you know a family going through this battle or a similar one. How about pay for a date night for the parents, and offer to sit with their kids while they get an evening out. These small things make a world of difference! When your child is diagnosed with cancer, the whole family is diagnosed with cancer because the entire family is affected in ways I can not begin to describe. These small things help ease some of it.
Where does one begin when thoughts are circling through ones head a mile a minute? I suppose I will start with the kids are such a joy this week.
They hare starting to raise butterflies. The little caterpillars arrived and we watched them eat and grow, eat and grow. We watched as the cocooned themselves and David cried as one was knocked down and died. We Transferred these tiny little cocoons into the mesh home that came for them. We will enjoy these little guys while we are able, and we eagerly await them emerging from their cocoon.
To me, it reminds me of each of my children.
David… he has blossomed into a wise inventive, creative, and compassionate young man. At 9 yrs old he is pushing and pushing to break free of the boundaries we have laid for him and find some independence in the big world. He strives to be bigger, better, to make a difference. He has gone from my shy little guy to a very outgoing young man who tells everyone whose anyone in his world whats on his mind.
Melanie… she has gone from my shy little princess who struggles to find words, to a young lady who will tell you whats on her mind… even if she has to kick and scream to get her point across. Her love for family is immense, and her heart feels like no 5 yr old I have ever seen. She feels everything with a depth beyond her years.
And Joey. He has come from the brink of death to full life. He has evolved in his own way… from the sick little boy he has been to the healthy, rambunctious, demanding toddler he is today. He is emerging from the cocoon we have had to put him in to protect him to face the big world and take it head on and fearless.
My 3 butterflies, each in their own right. Each striving to break free in their own way.
And in our own way, our family is breaking free and flying…
I would like to announce a few important events going on.
First and foremost… Announcing Joey’s Make A Wish. We have few details at this time, but what we do have is this. Joey will have his big presentation on July 14. Then on July 18-23 Joey will get his wish. SHHH no details to be announced at this time… you will wait till we find out the details too!
Second, we are forming Team Joey’s Fighting Warriors for Light the Night 2011. If you live in the Orange County, CA area I would encourage you to join our team at Angel Stadium this September. We will walk this year in HONOR of Joey, in MEMORY or the ones who have lost, and in RECOGNITION of the families who have been and will be affected by histio, past present and future.
I would also like to ask your support. We would like to see that Joey’s fight has not been in vain, that it has impacted someone somewhere. See, I want to know that he did not get Histio for nothing, that God has a greater purpose. I feel drawn to do this walk… and I am asking your support. Please help support us as we Light The Night by making a donation here.
In closing today I would like to ask that we take a moment to remember all the children and adults who have lost their battles to histio and cancer. To remember all those still fighting, and to celebrate those who have emerged from the battle as survivors. The unsung heroes of the world…
I am angry. I admit it. I just don’t see the sense in everything my Joey has gone through. When Joey was diagnosed I believed with every fiber of my being that we would beat histio and have no long term effects. With each relapse, each treatment I continued believing that. Today though, I wish I still had that naive belief that he would come through this 100% unscathed.
Clinic today went as well as can be expected. After he had his bone marrow transplant in October he quickly developed Graft Versus Host Disease (GVHD). Not the best way to explain this is his donors cells do not recognize his body, so they see him as an enemy and are trying to wage a war with his body. This is treated with immunosuppressants such as Tacrolimus, and steroids such as Prednisone. Skin GVHD can be treated with steroidal creams.
His got bad, and we had to resort to a rescue method to get it controlled again while he was still in the hospital back then. Since then it has been MOSTLY controlled. However we have out flares and we up the meds again. The goal is to eventually be able to wean off them completely. But that is not always the case for everyone.
GVHD can be dangerous is not controlled. I know the seriousness of GVHD and it does scare me. I watch his skin consistently. The doctors have to monitor for the rest. And because of this we have caught many GVHD flares early on. But sometimes its hard because he always has rashed up with heat. As long as I can recall he gets red when its hot, which masks the GVHD.
However there is a difference. And we have seen that he flared several weeks ago. We added in some creams and it improved by last visit, so we continued. However this week it was not improved so we are going back up on all his meds.
I want to scream! We traded histio for GVHD. And YES I would do it again… but NO its not fair!
On top of this we will be testing for Diabetes Insipidus (DI). His thirst is super high, but not always. The question is he comfort/boredom drinking or is he doing so because his body essentially is craving it. THIS is why we need to test him, and we are starting with a dedicated Pituitary MRI.
However clinic was not all bad today. The nurses and Dr. W brought in a birthday cake for my little Warrior and gave him birthday gifts. Joey saw them bring toys and thought for sure it meant another poke or procedure. So he screamed and hollered at them. But I guess thats expected.
And while I know Joey is not “cured” he is a survivor. Now we just continue to monitor him… make sure his GVHD stays controlled and he has no relapses. Make sure he stays healthy as possible. And find out if he has DI.
my sister bought me a CD I had been wanting as a thank you for helping care for her and my mom during my moms recovery from major back surgery. The CD was Matthew West Story of Your Life. Little did I know the emotions that track 8 would stir. It was a song that brought back memories, and still gives hope. It is my new song for Joey. This song had become my theme song for my little warrior.
It talks of the feelings of diagnosis, of being told to give up, of faith being worn away, and strength that falters. Then it talks of waking on the other end of the battle as a survivor. The chorus though… the chorus makes me want to sing at the top of my lungs…
Nothing can stop you now
Nothing can back you down
You never give up, never give in
You’re a survivor
THATS my boy! Nothing stopped him, he never gave up and today he is a survivor.
Granted I know we’re not done… there is more to do but his battle with histio… that is in the past. Now we get to look towards the future.
And part of looking towards the future is days like yesterday.
Running with the sand between his toes, sunscreen lathered on every exposed inch of skin, and his sun hat and sun suit at the beach. Life returning to normal. A SURVIVOR.
Hold your kids close, cherish every second. We are one of the lucky ones to come out the other end. So many of our friends have had to have the strength to let go of their little ones. I pray no one ever has to feel the fear, the pain, and the reality that so many we know have faced. I hope one day we will all be survivors in battles such as this, especially the children.
We all hear these words at some point or another from our kids. If there was a parents handbook they gave when you became a parent, it would say in there “your kids will learn to hate you but never really mean it.” Typically you hear it when there is punishment happening or kids are pushing their limits and parents are reining them in. We have to remind ourselves they just are mad they aren’t getting their way.
I have heard these words from David and Melanie on many occasions. And honestly, it does not bother me much. I know they don’t mean it. But today I heard these words from Joey and it broke my heart to a million pieces.
I was pinning him down for the final poke in a series of multiple pokes to try to get his lab draw today. We had 3 nurses helping hold him down, while he laid on the hospital bed in the infusion center, wrapped in a sheet because of how violent he had gotten with us. And he looked at me with utter fear and anger in his eyes and screamed “I HATE YOU! I HATE YOU I HATE YOU I HATE YOU. I NO WANNA BE POKED!”
That was the breaking point for me, I cracked. Here I am doing what needs to be done and my 2 yr old child tells me he hates me. We had been trying for these labs for an hour at this point. Melanie had to witness it all. She, being the little momma of the family, refused to stay outside the room, she wanted to be right next to her little brother, and tried comforting him in her sing song voice.
I know he does not hate me, in fact I know he loves his momma sooo very much but at that exact moment, even I hated me.
Needless to say it was a bad day for Joey, me, and Melanie. And when all was said and done, it was decided that labs are not gonna be done at every visit… once a month now. This is too traumatizing for Joey, and frankly it is becoming traumatizing for me.
My heart hurts… my 2 yr old son now knows the word hate. But he does not know what it means.
Post with 1 note
A few weeks ago me and the kids planted flowers is small pots and we monitored and tracked their progress. Melanie’s were the first to shoot up through the soil, and she was elated. David’s followed a day or 2 later, and Joey’s straggled behind till we almost gave up on them. But Joey, in true Joey fashion kept pushing “mommy just one more time ok? another day!” Finally we saw his pushing up, up, up. Well it came time to transplant them… to bigger pots as our flower garden area is no where near ready. Moms been lazy and not weeded it yet. We transferred them and I worried they would die… the kids were a bit rough on them but it was their project.
And they did survive. So now mom has to get the garden weeded so we can put planting soil in and plant our flowers in the ground. Well, guess that means I got 3 little worker bees who can help out! So we try to spend 30 minutes or more each day weeding our little garden area. What hard workers I have… when they aren’t throwing weeds with roots dirt and all at each other and me!
However weeding our little garden came to a small break this week. Gramma had to have surgery and needs the help of the Queen Bee and her little worker bees. We arrived yesterday in full force, ready to jump in and help. Dinner was served, kids gave free cuddles and made gramma smile, and we camped out for the night to help where we can. Poor gramma is a bit sore still! And what busy little helpers they have been! Joey gives cuddles, and likes to carry things to gramma and auntie, Melanie reads books and tries to be a little nurse, and David helps out but is more interested in flirting with the neighbor girl. Yes, my little David has a HUGE crush on the neighbors little girl.
They have helped me clean grammas house, and have helped bring smiles. My little worker bees are so good at handling it all! They just LOVE to help out and I am SO proud of all their help! I’m thinking when all is said and done we’ll have an ice cream party!
Anonymous asked: First--I'd like to tell you something.--Traci--I am so very proud of you!!! You are quite a woman. I am so fortunate to have met you. You speak of heroes, but as heroes usually do, they deny being one. YOU are a hero, a real one. You have opened your soul to others and have helped make it possible for others to be available to be heroes, but you don't wait like the rest of us, you dive on in to help others. Thank you. You are a true hero.--Dee
Someone sent this to me through this blog many weeks ago (to send me questions or reponses just click “ask a question”) and I remember crying. Today I am responding.
Thank you, dear friend, for your wonderful and kind words. I do speak of heroes, all the time, because I have a tiny hero living in my home, and so many heroes who live in my heart as well. I don’t think I will ever see myself as a hero, but to know others see me that way, it touches me so very much.
I feel so unworthy of being called a hero. My job is to teach my children, to protect them, to fight for them. And now it is also to fight for the children who battle histiocytosis. To me, I am only doing what I feel must be done. For if the parents of these children will not fight, will not raise our voices and be heard, how on earth can we expect those unaffected by this disease to do so?
To me however, I can not view myself as a hero and am humbled that someone does.
To me the true heroes are the ones fighting this disease on the front lines. They are the ones who cry, pray, run fundraisers, and stand by families such as mine. They are the ones who have stood by our sides even though it was hard for them to bear. Those are our heroes.
And of course, the ones who donate life by donating bone marrow, blood, platelets, etc… or the nurses and doctors who stand and fight to save the children and adults.
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