Being "done"

Ultimately we decided to stop chemo after 5 rounds.  We were supposed to have a total of 6 but EVERYONE involved felt that Violet had had enough, and that 6 rounds were not needed.  It was difficult but we made sure we got all the information and that we were doing what was best for her.  So after deciding that we were done with chemo, we were scheduled for her scans.  Scan week is HELL, it truly is.  You get your scans done and then you have to wait days for results, and everything literally stops while you wait for answers.  You worry about the what ifs.  Those few days drag on and every time your phone rings you about jump out of your skin.  So, we were told to come up to the hospital for results, which in itself scared me as I knew they don't just call you up to the hospital to tell you that you are fine.   We got to the hospital and waited to see our nurse practioner.  When we got off the elevator I saw my hospital appointed psychologist waiting for us, and my heart stopped.  I thought to myself, it's bad, they have called my psych because they know we are going to flip out.  So, I went to her and said "tell me, you know don't you, just tell me"  I felt like I couldn't breathe. I had a hard time holding Violet.  All my senses were heightened.  I scanned her face for any sign of emotion.  She looked at me and said "I just know you are getting results today, I don't know anything else.  I just wanted to see how you are"  Pretty sure I just answered her question.  I was CRAZY.  We waited for what felt like forever for the nurse practioner, I literally felt like I was going to black out.  Finally our nurse practioner walked in and announced that Violets scans were "beautiful"  that she was clear.   YAYAYYYY!!!!!!!  I was immediately exhausted from being so stressed.   She showed us the scans and smiled.  I asked "can we schedule Violets next dressing change while we are here."  Violet still had her tubies in her chest, and the dressing on them has to be changed once a week, a process that Violet hated and feared.  But, I wanted to just get it scheduled while we were there.  The nurse practioner looked at me with a smile and said "how about if we take them out before they are due to be changed again."  I was in shock, Violet had her tubes since February 13.  I wasn't sure Violet remembered a time that she didn't have them.  We scheduled to have the tube surgery to have them removed, which just made me feel even better. and then she said "Violet will ring the bell today, signifying that she is done with treatment.  Let's take her out right now."  SHOCK, TOTAL SHOCK.   I was still trying to wrap my head around being done with treatment, and now we were scheduling her surgery and we were going to be ringing the bell..  WOW!!!!  Violet walked out into the hall with us and I told her you need to grab this rope and ring this bell as hard as you can, so ALLL the kids can hear you.  V looked at me like I was crazy, she had no idea what was going on and the significance of all of this.  I had to help her ring it, several nurses were standing around and they clapped. Violet looked at them and immediately got embarrassed and walked away with her hands behind her back.  The nurses assured me that we would be ringing the bell again when all our friends and family could join us. 

Every night for the last almost 8 months Violet had to have a medication injected in the tubes as part of our getting ready for bed routine to keep blood from clotting in the tubes.  The last night, we video taped Mommy doing the last dose of Heparin and we all said goodbye tubies.  I explained to her that the next day we would go to the hospital to have the tubies taken out, and that now for the first time since February that she would be able to take a bubble bath in her tub.  She looked a bit confused.  She did so good thru surgery.  They took her back and by the time Charlie and I walked to the waiting room to check in, the doctor came out and told us she was done and that we could go see her after she woke up.  When we got back to V she was just sitting in her bed with a bandaid where her tubies had been.  She was able to take her first bath that night.  It took her some time to get comfortable, the first few baths consisted of her just standing in the tub.  She was too nervous to sit.  But now she literally swims like a mermaid:) 

So, there we were.  Finished....normal.....whatever that means.  I really struggled.  I still felt very nervous, and sad, grieving for all we had been thru.  Shocked.  What does done mean?   Will we ever feel done?  Can you be done if you are still getting scans every three months?  What happens now?  What does normal look like for us?   Will I ever not be afraid?  What do I do without the doctors and nurses now?  We aren't in treatment and we aren't in remission, so what are we?  The first few weeks I feel like I was okay, I was so excited to invite everyone to come and watch Violet ring the bell, I delighted in watching her hair come back.  I loved watching her play, and swim  in the tub.  But then something happened.  I am still very much involved in keeping in touch with all of our friends at the hospital and several of the little ones that were done before us all the sudden had to start all over again......relapse.  It happens.  More than I want to know.   All of our friends and family were coming and saying, "aren't you soo happy, you are done"  and I felt weird.  I wasn't so happy, I was still sad, still TERRIFIED.  For the last 9 months I've been focused on fighting this terrifying invisible monster off my only baby, I'm exhausted, and afraid that it will pop out again.  No one can tell me it won't.  Now that the fight is over and I have the time to absorb what we've been thru I'm horrified.  We aren't done, I don't feel done.  We have to face all this fear again in 3 months and then 3 months after that for Violets whole life.  No one knows if her cancer will return, there is still so much unknown.   I felt like I was disappointing everyone because I wasn't elated.  I am so beyond grateful that Violet is doing so well.  But I can hardly be happy when I see my child cry several times a day because she can't walk or she trips over her own feet from weakness after the chemo that may never go away.  We are one of the lucky ones, but we aren't unscathed.  Violet has Physical therapy to try to help her sweet little legs, and I'm devastated to see all her scars and issues now.   It has left her weak on the left side of her body, she is covered in scars from surgeries, she still has days I can tell she feels sick from Chemo.  I am grateful,  I'm so grateful she is still here.  I have seen families lose their babies to this monster.  I know how blessed we are.  I am so wrapped in guilt that I am letting everyone down for not just being able to focus on that.  I am working thru all of it. 

We invited everyone to come to watch Violet ring the bell.  We had so much support thru Violets initial 16 hour surgery to remove her tumor and I was so moved to see most of all of those 30 people that sat with us return to watch Violet ring that bell.  I walked into the hospital with Violet, she was dressed in a Rapunzel ballgown of her choosing.   We turned a corner and there they were, it took my breathe away, sooo much love.  And now there was our new family as well, all of Violets nurses that had helped us thru this nightmare.  The beautiful faces that took care of my baby, and me.  I walked over to the bell and tried to start to thank everyone and as I looked out and saw everyone I broke down.   I cried.  It was so overwhelming.  I don't even remember what I said, but then Violet RANG THE BELL!!!!  In fact before they took it away she ended up ringing it SIX times:)  It was a BEAUTIFUL day, full of love for our brave girl.  She was soo happy and definitely felt the love too.

Several days after Violet rang the bell my sweet Daddy called and woke me up, "I'm so sorry to have to tell you this, they found a brain tumor in me."  I was DEVASTATED again.  Not my Daddy too.  He underwent his own brain surgery with all of us by his side.  His tumor, thank goodness turned out to be noncancerous, but still definitely affected us all.  The doctors say that Dad and Violets brain tumors are unrelated and just a fluke.  Lucky us I guess.   He was amazing and strong and is still recovering but doing well.  Shortly after I knew Daddy was okay we went away to Tennessee just so we could unplug and unwind, reflect and celebrate life.  My very dear girlfriend had offered us a free vaca in her STUNNING mountain cabin.  She gave us gas money, and passes to a themepark in the area.  I was and still am in awe of her generosity.  We had the best time, and then several days in, I got the call that my grandfather passed.  We came home early to be with family and to attend his funeral.   This year has been SOOO hard.  I am having a hard time relaxing as it feels like every time I do something else happens.  But we have absolutely had our blessings as well. 

I have made it our mission to do everything we can to be advocates.  This experience has changed me.  I am a different person now.  I want to do everything I can to help these kids, and to give back, we have been given so much and I want to pay all that forward in any way I can.  Violet and I went and spoke to some classes at a local high school about pediatric cancer and after we spoke to them, the classes decided to do fundraising for pediatric cancer research and they have asked us to come back in a few weeks to address the WHOLE school.  They are then hoping to challenge their rival high school to raise funds as well.  This is what I am passionate about.  We also participated in a local walk for pediatric cancer and we were soo moved by the experience.  A lot of money was raised to help these kiddos.  They did a special presentation for all the parents of children who are lost to this disease that made me sob, and then they had all the survivors come up and get a medal.  Violet loved that attention, and it felt so good to call her a survivor. 

We are trying to find our normal.  Violet is over all doing pretty well.   We are addressing the issues she is having, and we are hopeful that she will get better.   She is laughing more, crying less, her energy level is coming back, and I'd say that sometimes she's even a maniac.  She is sleeping thru the night again.  She hardly ever looks for her tubies anymore.  I am seeing a new doctor who helped me to understand that what I went thru with Violet being in that hospital room watching her struggle for weeks at a time was the biggest trauma a human psyche can stand.  And that when it's prolonged like that your brain chemistry changes.  Your brain can become conditioned to be afraid and sad, and you literally have to retrain, to relax, and find joy not fear.  I will be continuing to see her.  One of my very close fellow pediatric brain cancer moms once told me, this is all about finding a line between hope and fear.  You have to find that balance everyday.  Because if you fear too much you fall, and if you hope too much you can also fall.   You have to walk right down the middle and that is what I am trying to do.  We are scheduled for another scan in December.  I am already a nervous wreck.  I am hoping that with every scan I will feel better and better, and learn to breathe thru it. 

But what I keep coming back to is gratitude.  Gratitude that my only baby, my every dream come true is still here, and she's amazing.  She is strong, brave and beautiful.  I kiss her face off daily, we dance often.  We adventure constantly.  I am soooo grateful for the people we have met, the love we have been shown, the generosity, the care and concern, the bonds we have formed.  I can confidently  say that there is NO way we would have made it thru this journey without you.  ALL of you.  Even the people who just smiled at me in the hallway at the hospital, it all helps, the donations when we didn't have groceries, the people who followed our journey, and read the blogs, the hugs, the phone calls, all of it matters.  Never underestimate how much kindness can do for someone.  It is EVERYTHING.  So, thank you.  I will continue to blog of our adventures and our updates.  But, please know how very grateful I am, and that I'm trying to be happy and grateful.  This is a journey, and I hope that that part of our lives is done.  I have created a facebook page for Violet called Violetstrong where I try to post when I can almost everyday with pictures and updates.  Please feel free to follow us there.  It can be found at www.facebook.com/violetstrong2  just click the like button and you will get her updates in your newsfeed.  Thank you so much.  

 Our family at the Curesearch walk, raising funds for pediatric cancer research.  Such a great night

                                              Our family the day Violet rang the bell. 

                                                                  Proud Mommy

                                     At a local school speaking to students and advocating

                                                              My dream come true

 

Our girl

What it's really like...

So much has happened.  I let too much time pass again.  I'm afraid to write again.  I'm afraid this may be a darker blog.  So, I apologize in advance. 

We are still home.  After Violets round five I noticed that she just wasn't doing well.  By that I mean, her color was bad, her energy was very low, she cried a lot, and seemed uncomfortable often.  She wasn't eating or sleeping well.  I mean every round is hard to recover from, and the chemo she was getting is known for a delayed attack.  But, this was different.  My mommy instincts were screaming at me that she had had enough.  And as I mentioned before the longer we are there, the more we witness and realize all the dangers it gets scarier and scarier.  In addition to this, Violets dearest friend William as I mentioned in my last blog, was REALLY suffering.  He came in for his last round and we saw him in ONE day just crash and burn, and it terrified me.  I was beginning to see and learn that these kiddos do have limits and if you push too hard sometimes the "treatment" can become the demise.  

When we determine that Violet is strong enough for the next round, every time she is sent thru a series of tests.  One of the first things they do is test her hearing to make sure that the chemo has not damaged her hearing, which by the way would be permanent. So far we have not seen any hearing loss, however she is at risk for five years and will continue to be tested. After the hearing screening her kidneys are tested.  This consists of taking V down to a room where there is  a table under a large device.  When we arrive they have me lay V down on the table and they proceed to strap her down, in a giant Velcro papoose.  She screams and tries to break free, screaming "please no" and "help mommy."  Which is heart breaking enough, but then they bring in a syringe filled with a radioactive material, they find a vein, or attempt to find a vein, it usually takes several pokes...all the while Violet is still screaming, making direct eye contact with me, terrified and pleading for help.  After the radioactive dye is injected in a vein, my sweet girl is left strapped to the table for 15 minutes.  Sometimes she calms down and surrenders, sometimes she doesn't, but I usually break down and cry with her. After the fifteen minutes are up, I can pick her up, she is usually shaking and sweating, exhausted.  After these two tests are passed we are admitted.  She is put in a large room with several other cancer kids and they hook her up to an iv to start fluids and they ask us the same questions they do everytime.  After several hours we are transferred to a room that will be our home for a least a couple weeks.  Violet is attached to an IV pole for at least 4 days, which doesn't sound that bad, .....unless you know Violet.  She is a VERY active almost two year old.  Imagine that you put a tube in a curious puppies heart, and then attach that tube to a stake in the yard...you get where this is going.  I almost literally have a stroke every time.  She has no concept of how dangerous all of this is.  She just wants to run and explore while she still feels good, because the chemo doesn't make her feel like snot right away.  So for several days my life consists of trying to take walks with her, she will take off at a full sprint while I literally jump to keep her IV pole close behind her so that the tubes into her heart aren't strained to the point of snapping.  She jumps in her bed, tangles the wires, runs away, trips and falls.  It's a nightmare.   And the tubes are on her 24 hours a day for at least 4 days.  During the first day several nurses come in dressed in stepped down hazmat suits for fear of spilling the substance (chemo) they are carrying on themselves as it is dangerous and will burn them, and they proceed to hook this up to tubes that go directly to your childs heart.  You watch knowing this is the only treatment, hoping for the best.  Violets vitals are taking every four hours, around the clock.  She is given baths every six hours around the clock for the first four days.  They come in in the middle of the night in sanitary suits and wake her up by scrubbing her down and replacing the dressing over the tubes in her heart.  She wakes up afraid, unsure of where she is, they finish up and leave but  by the time I get her calmed down she has to have meds to combat the effects of the chemo, the meds are every two hours, so despite being terrified and exhausted, there is no sleeping. Please remember, I LOVE and adore our nurses and I don't mean to sound like I am bashing them.  They are only doing their job, and they do it well, but I just want everyone to know what it is REALLY like.  After the first five days Violet is given another drug to help her recover, while this drug is administered she is hooked up to a heart monitor, an IV, a blood oxygen monitor, a digital thermometer, and blood pressure cuff, for at least 16 hours.  Which means she is confined to a chair in my lap.  Also around this time, the vomiting starts, it is horrible to watch, and you press a button and they come and help clean up and give her even more meds.  Her appetite drops off, her color changes, her breathe smells like she drank drain cleaner.  What little bit of hair she has grown falls out in clumps. It's horrifying.   Most kids develop fevers and infections, which are often fatal.  Doctors bring in consent forms for different meds, and the have to tell you all the potential hazards.  It usually sounds something like this...your child is very ill, in order to survive we need to administer this drug, this drug may cause fatal side effects, sign here.   It is all scary, all the meds have terrifying hazards, and you sign and pray. After the chemo is administered you sit for weeks terrified every minute.  Any germ or fungus can attack while your child is weakened.  You become paranoid.  You pass other terrified parents in the hall.   You hear the child in the room beside you crying and screaming. You leave the room for several minutes to clear your head, and the nurses ask you to return to your room, one of the children on the floor has passed away and they will be moving the child shortly, please stay in your room.   This has been my life since January.  At least two week stays every time, and then you are discharged, you are supposed to transition your child back into a normal life, so they can recover, and then you start all over again.  No where feels like home.  I isolate and shut down.  I wake up several times a night in the midst of a panic, not remembering where I am, knowing something is horribly wrong but being so foggy I don't remember exactly what it is, oh yeah Violet has brain cancer, panic sets in.  I'm awake again.   Right when you feel like you are starting to breathe and function again, it starts over.  We have seen losses with every admission.  We have seen friends go to ICU in critical condition.  It is to say at the very least horrific. 

So, when I saw my little beautiful girl struggling so hard after round five.  I thought, I have to tell them that I am scared, I have to tell them I know she's strong but she may have been hit too hard.  Once a week Violet has to return to the hospital even when we are home to have the dressing on her chest tubes changed, which she hates and cries about.  They also check her body to see how well she is recovered.  So, when we had to go back to check these things, after consulting with Charlie, I just asked.  I said "we have done five rounds of high dose chemotherapy, Violet is really struggling to recover, how did you guys decide we needed to do six rounds, and how important is it that we do six??"  I was expecting to get a very long explanation about all the planning and research and how vitally important it was....and the response was "We just chose six because that's what we do, five isn't proven to be more or less effective than six, we have attacked Violet with very strong chemo every round.  Her type of cancers prognosis is mainly dependent on surgery."  Violets type of cancer is very rare.  It is less than one in three million.  So, there isn't a lot of research.  However, what research they do have shows that if the tumor is COMPLETELY removed with surgery her chances of survival are 86%, which is pretty good.  Well, Violets neurosurgeon operated on her for 16 hours and told us he used a microscope on her brain to make sure that he TOTALLY removed it, and that it was very distinct so he felt certain.  In addition to having the tumor completely removed we also followed up with five, very aggressive, high dose chemotherapy rounds.  So.......round six was up to us.   They didn't have a strong argument.  The response to how vitally important is round six was literally a shoulder shrug. 

So, after consulting with ALL of the doctors involved and talking about it as a family.  I think we have decided to forego round six.  Violet hasn't had chemotherapy since the end of May, and she was in the hospital on Monday to have her dressing changed and to have  her body tested for recovery and they found that after 8 weeks of recovering, 8 weeks after her last dose of chemo, she still wasn't recovered enough that if we did decide to proceed with round six they wouldn't allow it at this time, because she is still struggling.  The chemo has attacked her entire GI tract.  Leaving ulcers and sores all the way thru, she screamed with every poopie and potty.  As  a mommy my head is spinning.  I have been in survival mode for so long I can't imagine being done with chemo.  Violets hair is starting to grow back, her beautiful eye lashes are returning.  I look at her and she's starting to smile and play and laugh again.  I think we are done with chemo.  So, what does that mean....that means that on September 4th we will take Violet to the hospital to be sedated for an MRI of her brain and spine, and as long as that comes back clear like all the others have, the tubes in her heart will be removed shortly thereafter and she will ring the last chemo bell signifying the end of treatment.  We will be scanned every three months moving forward, as long as those continue to come back clear after the first year, she will get scans every six months, then every year for the rest of her life. 

The scan that they do, the MRI, she has had them every two weeks for the last several months.  They weren't sedating her for these last scans as they were doing them quickly and the risks of sedating her were too great.  I went with her literally, on the last one.  I rode on the table into the machine with my head on her chest, and I cried with her.  It's REALLY scary and confined in there.  It's soo loud and terrifying.  She shakes and cries when she is awake and I don't blame her, part of me is devastated that this will become her normal as this test will be a part of her life forever, but another odd part of this disease is all the things you become okay with as long as your child is still here. 

I am so full of mixed emotions.  I am sure all of you understand how elated I am at the thought of being done with chemo.  But it feels unreal.  I have spent everyday with her for her entire life, and everything feels different now, everyday is truly a gift.  We get up together everyday and make everyday an EVENT.  That has been a blessing.  I am sad, at leaving our friends and nurses, at leaving the security of the hovering nurses and doctors.  I am terrified of September 4th.  Scan week as any cancer patient can tell you is hell.  You get the scan, then you wait....you wait to find out that you are fine, go about being "normal".  Or you get a bomb dropped on your heart again, the cancer is back, or that theres nothing to be done.  The time spent waiting for that answer is agony. 

We will continue to cherish every moment.  I will continue to fight and advocate for all the little ones still in the battle.  I know that pediatric cancer is nothing that anyone wants to even think about, it is a nightmare and more than anyone can bear.  But, it's happening EVERYDAY to SOOOO many little ones and families, and saying I can't think about that, or it's just too much isn't fair.  Nothing will change if we don't all make ourselves aware and help.  I never had any real consciousness of pediatric cancer before this happened.  My eyes are wide open now, and I am forever changed.  

So many have asked about our dear sweet William.  I am happy to report that he is home, however he is still very much in the fight.  He came VERY close to losing his battle.  It was a loss that I knew I couldn't bear, and I am so glad that he pulled thru, although he isn't without significant battle scars emotionally, physically and mentally.   Please continue to support him.  He was such a vivacious little man, full of spunk and love, and I saw him just yesterday and saw how affected he is.  The last round of chemotherapy dropped his immune system so low that a fungus attacked his lungs, eye and brain.  Causing significant damage.  He fought so hard, and was able to go home, but he is at the hospital every other day for treatment for the fungus.  I hope that his amazing family doesn't mind me posting information about him, they must know that I love him dearly, and them as well, and that I only share to help promote awareness and support.  Here is a picture of him after he was released when Violet and I went to visit.  Cancer is BRUTAL.  But William is tougher.  His mother and I have become dear friends.  Being in this fight creates bonds that are profound.  She is an amazing mother and inspires me. 

 

Violet will be two a few days after her scan.  I so look forward to getting her tubes removed so that she can take a nice long bubble bath.  A luxury my sweet girl hasn't had in 8 months now.  I will weep watching her splash and play.  I also look forward to seeing what her hair will look like.  I can't wait for the first barrette.  I will again cry with gratitude.  This experience has taught me to appreciate everything.  Every tantrum, every smile, every hair and lash.   We continue to pack as much fun as we can into everyday.  We can't wait to see our friends and family again that we haven't seen in so long.  We can't wait for them to see the child that Violet has become.  I look forward to healing a little emotionally.  Knowing that the chemo maybe over has caused me to slow down enough that the trauma of all of this has set in more.  I had been so busy fighting that I didn't have time to reflect and process, it's scary.  Now that things have slowed down I'm really dealing with all of it.  I'm not ashamed to say that I am in counseling weekly and that I am reaching out for help. 

We will be taking a vacation in October, a very dear friend has offered her beautiful cabin in Tennessee.  I can not wait.   I am so grateful to her for this much needed break.  I am hoping to get back to work, doing what I love.  I am working at bettering myself on every level.  I feel like we have been given so much and I can't wait to pay it forward.  We are so enormously grateful.  I will try to post updates as I can.  Here are a few more photos of our adventures as of late.   Can't wait to continue to explore, play, and cherish every minute. 

 Violet and I with our dear friend Cindy Bish at a fashion show benefiting pediatric cancer families.

                                                    Snuggling in the hospital last round.

                                                    Eyelashes are starting to come back

                                                           Picnic lunch in the park.

 Our sweet Dr. Jackson and Violet.  He is the neurosurgeon who spent 16 hours removing every last bit of brain tumor.  He is a hero in our story.

                                                             Telling a funny story

                           Checking Daddys blood pressure:)  She is going to be a nurse someday

                    Look who picked out a new potty chair.  This will be our next great adventure. 

Gearing up for the final round

Once again I am very embarrassed that I have not done a good job at keeping everyone updated thru Violets blog.  I kept meaning too, and I felt so guilty.  I just think psychologically I am struggling, it is very difficult for me to open up and talk about everything, and relive all of this again thru writing about it.  So, I suppose in all honesty, I think maybe I wasn't writing because I was avoiding the fear and emotion.  I think that I have used that quite a bit, just absolute total denial.   So many people look at us and say, "I don't know how you do it."  I don't know how I do either to be honest, I don't have  a choice, and at certain points it gets too be so heavy that I literally just shut down, put my head down and go into total focus on V mode, and NOTHING else.  Including the blog.  So, I apologize.

I don't even know for sure where to start.  First of all, we are doing alright.  We got a new place, my amazing sister let us stay at her house for several weeks while we were homeless, which was amazing.  So many kind friends brought food, and we made it thru.  I was able to find us a MUCH smaller place, just up the road from our last apartment, with a much smaller rent payment.  The landlady was very kind and was able to give us a good deal, and get us in very quickly.  My family and Charlies best friend, and his son moved us in, and we spent a few days organizing, and finding places for everything, and purging anything we didn't NEED as there just wasn't room.  It felt good to simplify.  We trip over each other a lot in the new place, cause it's pretty tiny, but I like being in close quarters.  There are no stairs that are a danger to V, and she is never out of my earshot or sight.  I grew up in a small house and I think it makes for a nice bond when you can't get away from each other:)   The new place is starting to feel like home. 

We went back to the hospital for Violets fifth round.  We were in for 14 days.  EVERY single round I get such severe anxiety taking her in.  I don't know how to explain it......but it is just another reality.  We have seen so much, and know all to well, all the dangers.  When we set foot in those doors, and return to our second home on the 12 floor I become a warrior mommy.  I literally go into hyperdrive,  I become hyper aware.  I become a very devoted, hovering Mommy.   I don't like to leave Violet even to go potty or shower.  I watch her like a hawk.  I educate myself on every med, every chemo, every side effect, what we need to be watching for, and all the dangers.  But, its also nice to go back and see all our nurse friends and hospital friends.  The nurses up there are truly some of the most amazing people I have ever met.  I find that people who love your child become very dear to you as a parent, and to see the compassion and love from these young girls and men towards V during our darkest times makes me adore them.   They have also become very close friends to me, as they are the only people I see for weeks at a time, and because we are there so much, for so long they know me well, and some of them just come by our room to hang out and chat, which saves my sanity many days.  I find that I am very emotional about this being Violets last round, because the people at the hospital mean so much to us, and it feels weird that we may not seem them again, unless we come back and visit them, which we will.  Just this last round as an example, there is a nurse up there who sees us walking the halls with V several times a day, she had never been our nurse but, every time she sees us in the hall she talks to V in a Daisy Duck voice because she knows V loves Disney.  So, on one of our many daily walks in the halls, V got obsessed with looking behind double metal doors that were opened.  So, there was a small opening between the door and the wall.   The nurse saw V looking back there and she crouched down and said, "What are you looking for back there, sweet girl?"  and Violet just looked at her and smiled, and the nurse said "there's nothing back there but dust bunnies."  So, then every time we walked past those doors Violet would look for the "bunnies"  When the nurse heard this she rushed down to her desk and printed off several pictures of bunnies to put behind the doors for Violet to find, and every time we walked there were more bunnies to find.  Something that small made Violet soooo happy, and excited.  One morning the nurse came in and hid "bunnies" in our room.  We love the nurses, all of them.  That is just one story of many of how they go above and beyond to try to help the kids thru the scary traumatizing experience of being in the hospital.
 

                              Our sweet nurse showing V the bunnies hiding behind the door.

V got thru her fifth round fairly uneventfully.  One of the many blessings thru this experience has been the bonds we have formed with other families.  There is a family that we met during our second round.  I was walking with Violet and a little boy and his mom came up to us and said "I was googling myself on the computer, and a picture of your baby came up, isn't that weird?"  And he said "I printed it for you"  It was a picture that a mutual friend had posted online of Violet in the hospital with her daughter.  And I just said thank you, and was alarmed that anyone could just pull up pics of V, and thought I need to check into it later.  We kept seeing this little man in the halls, so after passing him several times, I said "Hey, what's your name?" To which he said "William"  and I said "William this is Violet"  they said hello and we kept walking.  From that point on every time we took a walk, and he was out and about, he would  pop out and dance and smile and say HI VIOLET, which delighted V.  She started to look for William everywhere, she looked up to him, and thought he was hilarious and cool.  She looked for him everyday and they would play together in the teen room or the playroom.  He was so patient with her being little, teaching her to play basketball or pool, taking walks with her.  He went home first and Violet was sad, always looking for him and asking for him.   He came back the next round and we weren't there, and all the nurses told us when we came back that he looked for her, and asked repeatedly when we would be returning.  When we finally did come back he flew out of the teen room and grabbed her in his arms, so happy to see her again and she just held onto him so tight and they were inseperable once again.  Playing together several times a day. The therapists that see the kids told me they try to match up several children of the same age and diagnosis when they can to form friendships, but they said they never would have thought to put sweet William and V together as he is, I believe 10, and she is not yet 2, but they have formed a bond that is undeniable.   His mother and I became close after talking about our fears for our babies, and our hopes for them moving forward.  The two families became close.  One round we got discharged and didn't get to say goodbye to them before we left, and William went down to another floor to a hospital carnival and he won a BIG play tent/ball pit and instead of keeping it he told his parents he wanted to give it to V.  So, he ran all the way upstairs to give it to her, and we were gone.  So, he took it home, and waited for the next round for us to come back, and brought it up all the way back with him to give it to her.  We were out on a walk and he had one of her therapists help him set it up in her room while we were out so he could surprise her when we got back.  He is such a mature, loving little man who looks out for her constantly, and worries over her.  The nurses see the bond that these two share and decided this last round to put them in rooms beside each other.  William told us "if they let V be beside me I won't cry or scream when they give me shots because I don't want her to be scared."  This last round V had some days were she was in a lot of pain and when he found out he told us "it's my mission to make her smile and feel better"  he had his dad take him down to the gift shop to buy her suckers and balloons that he would bring into her to cheer her up.  This last round was his last round, and his mother and family and I were in the toy room feeling elated watching him come back from receiving his last dose.  We were cheering and beaming so excited and happy for him, and he came back kinda of sad and I said "what's wrong, this is great, LAST CHEMO BUDDY, YAY!!!!"  And he looked at me with tears in his eyes and said "harder than fighting cancer is the idea of me having to leave my baby V up here in the hospital with out me"  I almost fell on the floor.  I adore this child and his family.  He has a large family and amazing parents.  They never leave his side.  All of the children are very loving and kind, mannerly and funny.  On July 3rd just hours after we were all playing and partying in the toyroom Williams right eye started to swell and by the next day it was determined that he was fighting a severe infection, and he went thru several scans, surgeries and was eventually moved to ICU, he is literally fighting for his life right now.  He has been in very serious condition for some time now.  We ask that all of our supporters please send love, positive energy, hugs, prayers, whatever you believe in, to help this AMAZING little man and his adoring, amazing family.  This disease is DISGUSTING and so scary and no family should have to live thru this. 

                        Violet and her sweet William high fiving in the hallway, "we got this"

 

 

I think the relationship with Violet and William is incredible and moving to so many.  We are horrified at the thought of him being in ICU in serious condition.  I've lost many nights sleep worrying about him and his family.  It gives me a whole new understanding of being on the other side of this, where you all must be.  Wanting to help, worrying, wanting to do anything to take it away.  Its bizzare to be on both sides of this at the same time. 

I have ALWAYS adored children, it's been my lifes work and passion to help children.  Going into the hospital I always feel like my heart will literally BREAK when I walk the halls and see all the little ones behind the doors, fighting for their lives, their bald little heads and smiles, so brave, all of them with a story and a family.  Being in the hospital for weeks at a time I literally have a melt down everytime just emotionally it gets to be soo heavy and desperate.  I have fallen in love with so many of these kiddos, and it's consuming me to see them struggle.  We have had three friends relapse this last month.  Two friends go to ICU, one undergoing a bone marrow transplant, which is so scary and intense,  and one of the little ones who is just a few weeks older than V passed away from her disease just last week.  There are days where  literally I can't focus from grief and fear.  One day last week I took a shower and when I got out I realized that I hadn't shampooed my hair, but did condition it and I had only shaved one leg, I am literally that crazy right now.  When you see little ones come in and they look healthy and they just want to be kids, and then within hours they are in their rooms sick and miserable.  It's heartbreaking and horrifying.  It makes everything in our lives look like a threat.  When V is in the hospital and her counts are low and she has no immune system I am so tense the WHOLE time.  This last round she wanted to color and she dropped a crayon on the floor and then picked it up and put it by her mouth and I panicked a bit......there are germs on the floor, those germs could go in her mouth and be the reason she gets an infection, is that going to send us to ICU????  It's awful, I think part of the anxiety also comes from the sleep deprivation that happens in the hospital.  Because I find that after a nap and a good meal I feel better, and realize once again that I can't keep her in a bubble, so I get her up and I chase her down the hall again, laughing and trying to catch her.  One of my dear friends who is also a "cancer mommy" told me not to become a dweller, meaning don't let this consume your life, LIVE, let V LIVE.  Run down the halls, get in trouble in the hospital for having too much fun when you can, and WE DO!!!  I'm so grateful for our support and families.  My mom and sister have always sacrificed there weekends to come down and sit with V so I can get away and sleep and eat, and recharge a bit.  Without them, and you all, I KNOW I couldn't do this.  You all reading this, everyone of you have helped us thru, your support, in ways you can't even imagine just by being interested in our story. 

Violet has at least another week at home before we go back again for her (fingers crossed) last round.  We are packing as much fun as we can into everyday.  Tonight we took a walk and V wanted to stop and look at every bug, and I cherish that.  I see so many parents that can't enjoy their kids, they hurry them along.  It was amazing to watch V be delighted with every bug on the sidewalk tonight.  Just squat down with her, and be amazed too.  She's such an awesome kiddo, and I adore every minute with her, even her coming into her two tantrums. 

To end on a high note, I will share that we received another amazing gift from a dear friend who I will allow to remain nameless, but this person gifted us a new family member.  Violet chose an ADORABLE new friend who she formally named "Pincess Minnie Biolet Murphy"  She is a 12 week old Zuchon pup.  She has been the joy in Violets life everyday since we adopted her.  Violet loves to walk her, and play with her, and I think Violets favorite thing to do is yell at Minnie when she gets rowdy she loves to yell "Minnie get your TOYS!!"  Minnie is a mixed breed, who will be 10 pounds full grown and she is so fun and delicious.  We are so grateful to have her.  My parents are puppy sitting her for us while we are inpatient but while we are in Violet facetimes on the phone with her pup everyday.  She was so excited to tell all her nurses allll about her new baby Minnie.  And now that we are home for a few weeks she is here with us, and Violet gets up in the morning and can't wait to get Minnie up.

Hope everyone is well, and that you know how much we love and appreciate all of you, and that we can't wait to pay all this kindness and love forward.  lots of love

Home after round 4 :)

We were released from the hospital yesterday after round four of Violets chemotherapy.  I have to say I was TERRIFIED of this high dose chemo, but, it went pretty smooth.  We are so grateful.  Violet got thru the baths every six hours for the first few days and that wasn't fun, it was exhausting, but not terrible for her.  She ate well thru out, which was amazing as she usually loses quite a bit of weight with the nausea and vomiting.  These drugs didn't seem to affect her belly as much, thank goodness.  She did drop down to zero counts for about three days and on the third day of zero counts she did get a fever, which scared me quite a bit.  When they have zero counts and they get a fever it can be an indicator of illness or infection and they literally have nothing to fight it off with so it can get scary very fast, but thank goodness Violet only had a fever for about two hours and then it went right back down on it's own.  The next day her counts were trying to come up so the doctors say they think the fever was just related to her body working extra hard to bring those counts up and that it wasn't fever or infection.  She recovered her counts VERY fast.  She was at zero for only three days and then she went to 16 then the next day 120 and the next day which was Monday the nurse came in and told us that Violet had SHOT up to 1,330!   So, they let us come home:)  She was only in for two weeks, which is tied for our shortest stay in the hospital.  We did get another MRI that showed the pocket of fluid we were watching was "stable and unchanged"  We will probably have to have another MRI before the next round just to be sure.  But Violet is getting used to them and seems to tolerate them pretty well.  Charlie and I go in with her and hold her hands and they do it so quick she is literally in and out.

We will be home for two weeks, which will be very nice.  Then we will go back in for round 5, I can only hope this next round goes as smooth.  Only rounds five and six to go, can't believe how far we've come.  My girl is a trooper.  It's been a long road and I can see the light at the end of the tunnel.

We did move out of our old apartment.  We were blown away by how much support we had.   The house was emptied very quickly.  Violets illness and treatment have been my only focus.  I literally live with her in the hospital and never leave her side.  I have educated myself as much as I can on all her meds and learning about her treatments.  I have to say I feel very guilty that I have let our housing/moving stuff slip a bit.  Typically I am very organized and love to plan ahead.  But, being in the hospital and trying to move is a nightmare.  We had so much help packing the place which was a TREMENDOUS help.  And then so many showed up to help us get everything out.  Our dearest friend Josh let us put all of our things in his enclosed trailer so we wouldn't have to rent a uhaul and then all our family and friends came to load everything up into the trailer.  When I left Violet in the hospital with my mom to come home to load everything up I was shocked and amazed and moved to see that by the time I got there it was already almost done.  I was horrified when I realized that everyone was working in the heat and that our air conditioner had pooped out and wasn't working.  Everyone was working so hard, without complaint in the heat to help us.  We are so blessed and grateful for our support system.  But in all our haste to get things loaded, we literally loaded EVERYTHING.  After the trailer was pulled away and parked at a friends house, I looked at Charlie and said, we don't even have clothes.  We only have what we had at the hospital.  Oooops, can you tell I'm distracted by Violet being sick?  My poor girl doesn't have any  of her clothes or toys or her bed until we find a place and get things unpacked.  But, Cindy Bish, who is amazing came to the hospital after she heard about our situation and brought with her some clothes she picked up for V so she would at least have something to come home in.  We will get thru this.

Our plan was to move into a rental home, but unfortunately the renters before us have really DESTROYED the house and it was unsafe and unready on moving day.  We are heartbroken for Charlies parents who have tried so hard to help us and disgusted that their cute little house was so mistreated.  They have been working very hard to clean it and get everything together again but they need time and its looking like there maybe some other issues that are really complicating things for everyone.  Sooooo,  they released Violet from the hospital to go home, and we are currently staying with my sister.  My sweet sister has allowed us to stay here until we have a place, but we are currently...homeless.  It makes me feel like I can't breathe just to write it, and see it written out like that.  But, the truth is we are.  It's no ones fault, it just happened.

Cancer is an awful disease that affects SOOO much.  Not just the patient.  We were a happy little family.  I had a job that I was passionate about and grateful for.    I was so in love with my life and my beautiful perfect baby that I had waited my whole life for. And then January 14th happened.  Violet was diagnosed with cancer and nothing has been the same.  Cancer has affected every relationship I have, it has put an enormous strain on everything.  It has created tension and issues in my marriage, marriage is difficult under normal circumstances.  It has completely depleted our finances.  We were a family that lived paycheck to paycheck.  I know that's probably too much information, but we were.  We were getting by, but with her diagnosis and me losing my job, we often find that we can't afford gas or groceries.  Medical bills continue to come.  Somedays I feel like I'm drowning, I literally feel like I can't breathe when I look at where my life is now.  The stress of all of this feels like an ocean that I can never get across no matter how hard I try.  But, then I look at V and see how far we've come, and I see and feel all of you, cheering us on.  Hoping for us, praying for us.  I see the cards come, and I read the messages.  I read every one, repeatedly.  I hear so often, we want to help, we don't know how.  Just that statement helps.  That you WANT to help, that you see the struggle.  A hug helps, a smile helps.  The donations have gotten us thru when we didn't have food.  A meal delivered or a phone call.  You all don't realize that I literally couldn't do this without all of you.  I think of you all daily, and it's what makes me want to keep going when I feel like I want to just lay down and cry.  So, from the bottom of my heart thank you.  It has been very hard for me to be on the receiving end of all of this help and support.  But, I just want you to know, that it does matter, and it does help.  And that I am trying my best to pay forward every bit of it every chance I get, and that I will continue to pay it forward and help others and that I am beyond grateful, and that I'm teaching Violet to be grateful.  Just this week a perfect stranger to us has offered to make beautiful shirts to do a fundraiser for Violet.  I don't even have words for how touched we are.

I am just grateful that my baby is doing so well, and that even though she cries because she is frustrated that she wants her things and she wants to go home, that she has a place to stay because we are loved.  And I have faith that things will work out.  They will.....I just have to have faith.  All that matters is V, and love, and we have so much love, and still so very much to be grateful for.  Thanks for letting me rant and vent.  Lots of love.

Chemotherapy round 4 day 8

I just put V to bed for the night.  She is doing pretty well.  This round is all new to us.  It is the first "high dose" chemo.  We came in early last Monday, and Violet got her hearing test.  They check her hearing before every round because the chemo can affect and damage hearing.  The tests came back perfect.  Then she had a limited MRI. I know I had mentioned earlier that Violets neurosurgeon noticed an area of her brain that he wanted to monitor.  Basically, the way that he explained it to us is that the area of the brain called the ventrical is a void where spinal fluid flows thru, it has a valve that opens and closes to allow spinal fluid in and out.   He believes that one of Violets valves was damaged by her brain tumor, and that now it traps spinal fluid so it isn't opening to let the fluid back out appropriately.   So hes concerned that it is causing pressure, and that he may need to go in and open that area up at some point. But that he saw no evidence of tumor, which is great news.  He asked us to get the limited MRI pictures to check on that valve before this round.   The pictures showed some improvement, so he felt comfortable for us to move forward with chemo.   We will have another limited MRI on the 3rd of June to check it again.   My standpoint is, clearly I don't want her to face another neurosurgery, but this one to repair the valve would be very minor, and he may not have to do anything at all.  It may heal on it's own, which would be awesome.  I love watching how Violet interacts with our neurosurgeon. After everything she has been thru she has a slight anxiety when it comes to anyone in a white coat, but she seems very calm and loving with him.   Its like she knows that he literally saved her life by standing over her for 16 hours tirelessly operating to get that nasty tumor out.  I think she recognizes his voice as he must have talked to her a lot while she was asleep during surgery.   Anyway, it's amazing to see the bond between them.

So, we got two new chemo drugs Monday and Tuesday.  One of the drugs require baths every six hours around the clock for four days.  So, she got baths day and night at ten and four.  By day four I was so completely exhausted as there was no sleep with this schedule.  But, I was amazed at how well our girl tolerated them.  She cried a bit everytime but always cooperated.  It MAY have helped that she had male nurses all four days that were very sweet to her.   She's a flirt:)   On Thursday she got her rescue stem cells that they collected way back at round one.   I was very excited as they brought them in, it felt like we were doing something awesome.  I like that they call it a rescue and that it is literally Violet rescuing herself with her own cells.   When they hooked her up to get them they told me that the cells are kept in a preservative and that it smells bad.  THEY WERENT KIDDING.   Think rotten creamed corn.  Our room reeked for a good 24 hours after.  You could smell it down the hall.  After the stem cell rescue she had to sit and have heart monitors and blood pressures every 15 minutes for 6 hours.   She did so great, and was so patient and still.

Now her cells have started kicking in and all her counts are super high, but the chemo hasn't attacked yet.  So, we are just waiting for that.  Her chemo will kick in at some point this week, knocking her to zero, leaving her weak and prone to illness and fevers and infection which can be very serious.   Then her rescue cells will fight back bringing her counts back up and we will get to go home.  Theres no knowing how long this will take, or how bad it will get.  But in the meantime she is fairly happy, eating well, and playful.  Its the calm before the storm.

She amazed us one day as we were walking the halls and her doctor saw her and said "Hi Violet, how are you?"  To which our little genius replied "Hi, I'm nauseous"   My jaw and the doctors hit the floor.   Did she just say nauseous????  She listens to everything here, and is learning all the medical lingo.  It's incredible and kinda sad.  She says heparin, (one of her meds) and nauseous and chemo, and helps the nurses thru every step of her care.

Among all the stress of Violets illness and care, we are moving this weekend.  It has been hard but with the help of my family and dearest friends we were able to get our apartment packed before we came to the hospital.  Moving is a huge stress but we are soo beyond grateful for all the help we have received and volunteers to help Saturday.  There is no way we could do this without you.   We were unable to stay where we are now as we cant afford it anymore with me not able to leave V to work and with all the medical bills.  But Charlies Mother and step father very lovingly are letting us rent a home from them, and the payment will be better than where we are now.  Charlie will be able to walk to work if he needs to, which is good as a few weeks ago his car completely quit on us with engine trouble.   We were able to find a very cheap car that is ugly as sin but mostly runs to get us  by for now.  But needless to say we have had a lot going on and lots of added stresses.  I lay in bed every night before I go to bed and think about all the things we have to be grateful for and all the love and support we have.  Beyond grateful to all of you.  This experience has definitively taught me what is important.  We have no money, and have to move and have cars that barely run, but we have a beautiful little girl, and the most amazing support system anyone could ask for.  Thank you to everyone reading this for all the love and support

Every round we meet new families, which is hard as you see more and more children get diagnosed and face this scary journey.  We have had several families that have reached back to help us when we were diagnosed, and they have been incredible support and guides.  The Bish's the Wellings, and Erika Decker were my amazing helpers when I wasn't sure I remembered how to breathe, and I have tried very hard to pay it forward by introducing ourselves and reaching out to new families.  Violet continues to make new friends.  She is thrilled that her sweet William is here with us this round.  Tonight in the playroom Violet took William by the hand and just gazed up at him as they walked around and around together.  William is quite a bit older than her, and is very big brotherly looking out for and protecting her.   She calls him MYLiam.  He got her a pop up play tent at a carnival his last admission and saved it this whole time to give to her.  She looks for him everywhere and worries when she hasn't seen him all day.   She hadn't seen him in several days and kept asking for him and I told her he wasn't feeling good so she took my mom to his door and wanted to put a heart sticker on his window for him. :)  One thing I can say is that this experience has created bonds I know we will keep for life and we all look out for eachother like family.  Despite all the fear and stress and how horrific this has all been we have found so much light from all the incredible people in our lives.  Thank you so much for your continued love and support.  Lots of love

Home and day of MRI scan

 Violet and Daddy meeting some of the OSU mens basketball players who came to visit the oncology patients.  Such sweet guys, Violet refers to them as friends anytime she sees this pic.

 Cuddling with her baby, and visiting with our dear friend Cindy Bish.  We LOVE Cindy

 Violet, Mommy, our sweet friend and fellow oncology patient Sam and the Columbus Blue Jacket players who are Violets new friends.  Love her face in this pic.

 My sweetest, cuddly girl.

 Art therapy, painting with spaghetti.  She always amazes me with her artist talent.

 She has Daddy wrapped around her little finger, she talked him into pushing her around in her baby doll stroller.  So funny

 We adore the nurses on the 12 floor.  Violet is so into her dolls.   The nurses took her dolly down to the nurses station and all put masks on and performed "surgery" on doll, as Violet looked on to give her "tubies" just like Violet has.  Violet was BEYOND thrilled that her doll looks just like her, and she can care for her baby while they are caring for her.  So impressed with the care and love of all of our nurses.

These are the children of a very dear friend who lives in Dubai.  They did a cancer run as a family and carried a sign they made in honor of our Violet.  Violet has GLOBAL support.  I am moved beyond words.

We were released Sunday morning from the hospital after a 17 day admission, for round three.  Violet was so excited to put her regular clothes back on and her sparkly twinkle toe shoes.  She danced down the hallway out of the hospital singing about going home.  The third round went fairly well, although for whatever reason as I mentioned before I think it was very emotionally hard for me.   But, we are half way thru!!!!!  Only three more rounds to go.

We are so loving being at home.  We sleep with the windows in our bedrooms open at night, and Violet sleeps so peacefully in her bed, almost 12 hours a night.  We have had lots of play time outside, lots of walks and exploring.  Loving the warmer weather.

Today we went back to the hospital for a very detailed brain and spine scan.  I was a nervous wreck.  Violet hasn't had a detailed scan since before brain surgery.  I knew this was a big day, as I knew they wanted to make sure the brain tumor wasn't returning, and that they had really gotten it all out in the first place, it was another make or break day.  Because the scan is so detailed it takes two hours to complete.  So Violet needs to be sedated, which meant she wasn't allowed to eat anything last night or today.   We got up to the hospital early this morning to go to clinic to make sure her blood counts were stable enough to do the MRI.  Her counts were good, and she was so cooperative and pleasant for a little girl who woke up way too early and had a completely empty stomach.  After we got the all clear there we went down to the surgical prep area, and checked in.  We put her back into the hospital gown and waited.  She fell asleep in my arms and shortly after, they came to take us down to MRI.  Anyone who has any dealings with Childrens knows that nothing is ever on time.  We ended up waiting for her MRI for an hour and a half.  She started to really lose it, rightfully so, as she was exhausted and starving.  I was beside myself with worrying and exhausted from trying to keep her happy and entertained.  They finally came to take her and I just can't describe that feeling, of handing her over.  It is one of the worst parts of this.  But, they took her back and put her to sleep and Charlie and I went to get some food.  I was sobbing, almost sick.  And my amazing Momma showed up to support us.  We all had lunch together and waited to hear that she was done and in recovery.  It was another day I'm not sure I could have made it thru without my Mom.  She is amazing and I am so grateful.  After about two and a half hours we went and waited with all the other basketcase parents in the surgical waiting area.  As soon as she started to wake up they took us back to her.  There she was my strong, brave little princess in her cage bed, sound asleep, snoring softly.  They told us that she was still pretty tired and just to let her rest for awhile longer.  She was all wrapped up in snuggly blankets and looked so sweet.  We did our best to leave her alone, but after about twenty minutes the nurses gave us permission to talk to her and try to rouse her a bit.  She opened her eyes but they were crossed and she was still pretty out of it, I stepped into her line of vision and said, "Hi girlfriend, it's momma, I'm here"  She immediately tried to sit up and reach for me.  Melted my heart.  I picked her up and we all loved on her and kissed on her and then the nurse came into check on us.  She called up to let our oncology doctor know we were running WAAAAY late to our appointment with her to go over the MRI results.  Then the phone in our room rang, know let me take this oppurtunity to go back a step.  The day Violet was diagnosed was by far the worst day of my life, it was horrifying.  I took Violet up to childrens for a ct scan and NONE of us thought that it was going to result in anything, it was just a precaution.  So, I drove her up there, and they did a super fast ct scan.  I picked her up and told her we could go home and take a bath and get lunch now, and the technician said, if you can just follow me back here you have a phone call.  So, I ignorantly followed her back with Violet in my arms and there was a phone ringing.  I answered it with a smile and said hello, on the other end was our pediatrician.  She said immediately "I'm so sorry, Violet has a massive brain tumor, she is in serious danger I am sending a neurosurgeon to you right now."  I was DEVASTATED, and to say I was shocked was a huge understatement.  So today, waiting in that little room holding my girl, when the phone on the wall rang, I immediately got a HUGE pang of terror, I got an instant headache and started shaking.  Charlie answered it and said the doctor wants to know if it's okay to give results over the phone.  I could barely speak, I was so afraid Charlie was going to have that same moment of having our lives change forever AGAIN over a phone call.  This whole experience has made me hyper aware.  I scan faces and evaluate tones in voices in a millisecond.  I was studying Charlies face and body language immediately, I looked at my mom shaking and scared and said "this is really bad, it's bad, I know it's bad"  Charlie looked up at us and said "doctor says the brain and spine look good"  Anyone who REALLY knows Charlie knows....he is mellow....like scary mellow and pretty hard to read most of the time.  He was on the phone after that for what felt like ages, with no facial expression what so ever.  Just nodding and saying yes, I understand.  He hung up and said that the doctor said the scan came back clean, that there was a pocket of fluid where the tumor had been, that they are going to continue to monitor, her brain is still healing and trying to figure out what to do with the void that the tumor left, but that Violet looked good.  YAYYYYYY!!!!!!!!! I could have danced allll the way home.  We got her dressed and we walked back to the parking garage outside per my request.  I feel like today is the first time I really felt the sun again.  So tremendously relieved and grateful.  Violet is sleeping now.   I think we will all sleep well tonight.

I want to say yet again, how grateful we are.  To all of you.  I could never dream of getting thru this without all the love and support.  Thank you to our dear friends who have brought over food, it helps so much more than you realize.  Thank you for sharing our story, thank you for caring, for the prayers and well wishes, thank you for the donations, without which we wouldn't have gas to get V to the hospital for her appointments, or food.  Thank you so much to our families.  I am so moved by all the love and encouragement we have gotten.  I can't wait till Violet is older so that I can help her understand how loved and cared for she is.  Tonight we are so very grateful, for a clean scan and for all the love we have in our lives, and mostly for all of you.  Thank you soooooo much, lots of love.

Chemotherapy round three day thirteen

First and foremost, I'm sorry.  I'm sorry I haven't posted any updates to the blog in so long.  I feel very guilty that we have so many people who are interested in what's going on with our sweet girl and check the site frequently and who I am sure are disappointed by not having any recent information.  So, I am very sorry.  I have made it a goal to update the blog several times a week moving forward.  I am so grateful that we have so much support and interest, and I apologize for not showing that gratitude by posting more often.

V is doing well, we are drawing near the end of the third round of chemo.  Violet is currently standing in front me dancing, eating French fries.  She is amazing.  This round has been, dare I say the smoothest so far.  This rounds chemo drugs were the same as the previous two rounds.  But the doctors and nurses told us that each round she would probably respond differently.  She seemed to manage very well.  She still had some nausea and vomiting in the first week, but not as severe as before.  She also managed to eat all thru out this round which she hadn't done previously.  As a result she has maintained a good weight.  She has stayed happy, and funny through out.  She is currently waiting for what they call count recovery before she can go home.  As I had explained before she gets the chemo and after the nausea and vomiting they check her blood counts daily and approximately a week to ten days after the chemo is administered she loses all her white blood cells, which means she has no ability to fight infection or illness of any kind.  This is where my being a germaphobe has come in handy.  I wash her hands religiously and I am very careful about all her exposure.  I am afraid I have probably hurt some feelings unintentionally as I ask for no visitors while she has no immune system,.  I just have to protect our little princess.  MOST children in this phase of zero white blood cells develop a severe fever, around 105 and they are put on antibiotics, some of them even end up in the ICU.  We have so far managed to avoid all of that.  I am very grateful.

Oh, also....big news.  We got her genetic testing back and our beautiful girl came back NEGATIVE.  Which was a huge relief, and a game changer.  Her doctors said they feel pretty confident about her having a positive prognosis as a result.  Which made me cry with relief for days.  Unfortunately a lot of little ones with Vs type of cancer test positive for this mutation and end up having to face a second form of cancer in addition.

So, at this point we are days away from being thru this third round, making us officially half way thru her chemotherapy plan.  She has three more rounds remaining.  The first free rounds that we have already done are what they call standard chemo, and they were no picnic.  But the last three upcoming rounds are what the doctors refer to as high dose chemo.  She will be in another wing of this floor where there is less traffic and we wont be able to open our door or leave the room much, because she will be even more fragile and we have to be even more careful and isolated.  She will be receiving two new chemo drugs we haven't had yet.  One of them requires her to get a bath every six hours as it seeps thru the pores and can cause chemical burns on the skin.  The second is another one that will probably cause tummy issues.  These drugs also carry the potential of causing mouth sores which we haven't seen yet.  But, we have heard that they are pretty awful.  I am very anxious about the next rounds.  So she will receive the two new to us drugs over two days with baths every six hours, for the first few days and then on day four she will receive her stem cells back that they harvested way back in round one.  That was the process where they put the giant port in her leg and harvested her blood and collected stem cells,  well those stem cells are currently frozen at OSU waiting for the next three rounds when our sweet girl will desperately need them to as the doctors say rescue her, as her recovery will be very rough and her immune system and blood counts will plummet.  I am very unsure what to expect, but I am scared.  The last three rounds have not been easy, and I am very intimidated to hear that the next three will potentially be worse.  The good news is with our negative test result on the genetic test, once Violet is done with the next three rounds of chemo we will get to ring the last chemo bell symbolizing being cancer free and done with treatment.  We will just be coming back every three months to have brain and spinal scans to watch for a relapse.  Once we get thru the first year, the scans will become less frequent.

I have to be honest part of the reason that I haven't been writing is that I have definitely been really struggling emotionally.  I know it sounds bizarre but I feel like I am just now starting to really process and deal with all this.  The first three months I was literally a zombie and was just making the motions, I told mom the other day, I don't even remember the first few days after her diagnosis.  Now, the reality is starting to set in for me.  Realizing this is our new life.  Violet is growing up in a hospital, she is learning to walk in hospital halls, she is learning to talk.  Some of her first words were
"owie" and "please no" she knows all about heparin and tubies and owies and doctors.  It hurts my heart.  I find I am grieving for the normal childhood she deserves.  I am doing my best with the help of the amazing staff here to find any fun where we can but I am so heartsick over holding her down while she cries and we have to do painful procedures.  I desperately wish I could help her to understand why we are doing all of this.  Despite how hard it has all been, and despite all the many owies my brave girl has taken she always recovers and laughs and plays, and hugs and forgives, and sings.  It has been so hard for me to be so isolated up here.  I worry about Violet as well sometimes, until I see her befriending her nurses and fellow patients.  She truly has helped mommy thru this.  I am so grateful to be her Mommy, to get to spend this time with her, everyday, watching her develop and grow.  She is a marvel.

I came into this round very down, I cried all the way back up to the hospital.  I wasn't sure how to put one foot back in front of the other to do this again.  It was so much easier to be locked up here thru the long winter, now waking up to beautiful days, watching kids in the park below us playing hurts me.  I suppose it will just make us play harder on the days we are out.  It makes the sun feel warmer and the air a little sweeter when you haven't seen it or felt it in so long.  So, if you have the chance go out, put your face up to the sky for me and V and feel the sun and marvel in it for just a minute.  Hug your babies tight and never be the first to let go when they hug.

I am only able to get thru this by concentrating on all that we still have.  And its so much.  I am so grateful for all of the support from everyone.  All the cards, prayers, thoughts, hugs, food, texts, calls.  It helps soooo much.  I will be updating again tomorrow with a better idea of when this round will be done and I can take my girl out in the spring air again.  Until then, thank you for reading, and for caring, and please accept my apologies for not updating more.  Lots of love, and goodnight.