Birthday Present for Case

As the mother of the sweet baby Case, where would I even begin to describe what we have felt and still feel. There are no words, and quite frankly, even if there were, I am not sure I could be brave enough to use them. Sometimes it's easier to not delve into the pain of our grief and the horror in remembering what Case had to endure.

But in honor of my sweet boy, I had to make this post. I have a request of our family and friends, and even strangers. Case would be turning two years old this Sunday, December 16th. There is really nothing to do but cry when I think of it. But I want to remember the good times, and I want to celebrate the enormity of Case's soul and influence. And we need your help.

Please email me a memory you have of Case. It can also be a statement of how Case has affected your life, especially for those of you who I do not know and never met Case. I need to know that Case is still alive in us all.

I am hoping that Case's short life yields at least a 50/50 split between happy memories and not so pleasant ones associated with the monster that cancer is. Either way, please share a story of Case!

You can leave a comment here (though I am sure there is a word limit), or you can email me at casebeckham@gmail.com.  This will be our birthday present to Case. Thank you.

Camp for Case - campGladiator Boot Camp

Aubrianne Bishop is hosting three free/donation campGladiator workouts that will directly benefit the Beckham family. Anyone can attend (you don't have to be a campGladiator "camper"). Invite friends, family, neighbors, or anyone else you know who might be interested.

Facebook event

Location days/times: 

Wednesday, November 14, 5:30am – 6:30am @ Lighthouse Christian Fellowship in Prosper 4331 Prosper Trail (2 miles N of 380 off of Custer).

Thursday, November 15, 6:30pm – 7:30pm @ St. Gabriel Catholic Church in McKinney 110 St. Gabriel Way – off Virginia just west of Stonebridge Dr.

Saturday, November 17, 8:00am – 9:00am @ Valliance Bank in McKinney (food will be served by My Fit Foods after the workout) 5900 South Lake Forest Drive (NW corner of 121 & Lake Forest Dr).

Bring a fitness mat, water and a friend! Free Meal card from My Fit Foods with $10 donation, plus $10 Gift Card to Run On with a $20 or more donation.

Thanks everyone for your support!

Case Winslow Beckham Slideshow

Funeral Service and Donation Information

Funeral services for our sweet little Case will be held on Saturday, November 3rd at 10:00 am at the Church of Jesus Christ of Latter-day Saints chapel at 1324 West Exchange Pkwy Allen, Texas 75013. All are welcome to attend. There will be no viewing. Flowers are being received at Allen Family Funeral at 2120 West Spring Creek Pkwy, Plano, Texas 75023 (972-596-8200). In lieu of flowers, donations may also be made with the following options:

• Make a donation via PayPal. In order to avoid any fees, you can send a donation through PayPal. Log in to PayPal, click Send Money, enter the email address specified in the image below, click the Personal tab, and select Gift:
  
  
• Make a donation at any Wells Fargo bank and ask that the funds be placed into the "Case Beckham Donation Fund". If you need the account number, please contact us and we can get it for you.

Thank you so much to everyone for your love and support.

Case Winslow Beckham passed away peacefully in the arms of his loving parents late last night after more than a year-long battle with cancer. Even though we mourn, we have great comfort knowing that he is no longer suffering, and that he has gone to his eternal reward with our Heavenly Father. We have a firm hope that one day Case will be resurrected because of the victory over death of our Savior Jesus Christ. We also know that through our Heavenly Father's Plan, our families can be together again. Information regarding a memorial service for Case will be posted soon. Thank you to everyone for your prayers, love, and support during this difficult time.

One Year Anniversary

Tomorrow marks one year exactly that we started this horrendous fight for Case's life. I honestly did not think that we would still be where we are, with such a sick little Case on our hands. Considering that we were told that he had a 90% chance of long-term life, my surprise shouldn't be unimaginable.

We have been home for the last few weeks, enjoying (for the first time since April) being together as a family. On a day to day basis Case is happy and continues to make us smile.

Your continued prayers and thoughts are always welcomed and appreciated. We know Case is loved, and we thank you for that!

p.s. the picture is from X's birthday a month ago. I love seeing us altogether blowing out the candles.

My awesome mom threw an early Halloween party for the grandkids last night. Graydon was a daring medieval knight, Case was an adorable firefighter in bunker gear, I was a hula girl, and X was a man. Just wanted to share the pic. Case is happy!

Raffle Info

There are two fundraisers going on for Case right now...

Raffle for a quilt made by Case's aunt Kendra

Case's Quilt Raffle

Raffle for a basketball signed by Tim Duncan of the San Antonio Spurs

Case's Basketball Raffle

All the raffle proceeds go to the Beckham Family.

A Hard Day

We have had some hard days, especially two days ago on Friday.

We decided to have a permanent line put back into his body. Remember how his port had to be removed a week and a half ago due to infection?  His PICC line (think of a semi-permanent IV with two tubes coming out just under his armpit) stopped working and we needed to do something else.  We felt like it had been enough time for the old infection to clear with antibiotics...so onward we moved!

We decided to go with a Broviac over a port.  The details of why aren't really important, but think of a Broviac as a permanent IV surgically implanted into a major artery and comes out of his chest and has two tubes that look like the end of an IV.  Or you can google it.  The port required a needle being stuck into Case's skin and had to be changed weekly; the Broviac doesn't require that and it seemed nicer.

So Friday morning, still admidst our mourning our bad news, he went in for surgery.  These are usually minor and are day surgeries, but Case was admitted after for observation and because we had hopes of starting our new chemo regimen.  Surgery was successful.  Hooray.

Within a few hours Case's belly had grown very swollen, he had a crazy fever, and now his Broviac wasn't working (as in you couldn't get blood out of it).  An x-ray showed that the end of the tubing came out of the artery it was supposed to be in.  It would need to be surgically repaired, and it would have to wait until the next day...which means no chemo.

I pitched a fit, which resulted in Case going in for a SECOND surgery Friday night.  The hopes of repositioning the end of the tubing failed and a whole new Broviac had to be placed in. At 10:00 pm, Case woke up in the ICU due to wheezing and not being able to breath well on his own.  Well, that's not a surprise seeing as how he has been sedated FIVE times in one week, with three of those being all withing 32 hours of each other.  And each sedation required a hard plastic breathing tube down his throat.

So we started chemo at 2:00 am Saturday morning in the ICU.   The ICU is a wonderful place where vitals are checked hourly, day or night.  One of these new chemos is an oral medication.  17 mL of fluid being flushed into Case's mouth, who doesn't eat, at 2:00 am was such a pathetic disaster. So now our baby has another tube (NG) up his nose so that the chemo can be flushed into his stomach daily.

It just never ends for our Case.  He is having severe stomach cramping, of which we don't know if it's caused by the chemo or by the tumors in his belly.  So he is on morphine, and still requires oxygen.  In the words of a dear friend, "We are a HOT mess!" Oh yeah, and he has a bit of fluid on his left lung.  Seriously.

We just really need this new chemo to stop any new growth.  If so, we can possibly entertain going back to MIBG therapy in San Francisco.  We know many people are fasting and praying on our behalf and we thank you all for that!  We surely need it.

A River of Peace

I wanted to share an article in our church's magazine that gave me some comfort called "A River of Pease."   Click here to read the article.  It is written by a mother who lost her son in a car accident. She describes how she can understand that there is a purpose to the pain, even if she doesn't know that purpose right now.  Read the article...it's really short and really sweet.

I can say that underneath the miles of pain that I feel, I truly feel a river of peace because I know that my Heavenly Father has a very specific plan for what is going on and He will help us through it.  I know that in the next life I am still Case's mom and will always be.

I won't lie...watching Case go through this and imagining life without Case is more unbearable than can be imagined.  Remember the last time you had a major case of the butterflies in your stomach, and remember the last time you had that awful pit in your stomach? I have both of those inside me at all times...and that's on a good day. Bad days can't be described.

Yet I have to keep going.  My favorite quote in that article is the following:

The greatest gift we can give those on both sides of the veil is to move forward with our heads held up in faith and hope in Heavenly Father and Jesus Christ, even if each step is taken with tears streaming down our faces. For we are promised that “the grave hath no victory, and the sting of death is swallowed up in Christ” (Mosiah 16:8). One day “the Lord God will wipe away tears from off all faces” (Isaiah 25:8).

How beautiful and true are those words? I will keep trying to do that.

p.s. if you are not a member of the church I belong to, you may not be familiar with one of the books of scriptures referenced above.  I belong to The Church of Jesus Christ of Latter-Day Saints, or aka Mormons.  In addition to the Holy Bible, we have the Book of Mormon, which is where the book of Mosiah (referenced above) is found. Please click here to find out what the Book of Mormon is.  I would love to go into detail, but I feel lucky to find time even to post this tonight!

Update

I can't bare to post a sad picture right now. So here is a yummy ice cream picture from one month ago.

I have greatly neglected this blog, as I have been posting on Facebook more recently. Blame it on the purchase of our iPad, where blogspot runs incredibly slow and where Facebook is fast!

We finished Case's fifth and final round of high-risk protocol chemo two weeks ago. Last week we went back into the hospital for another fever, this one to the tune of 104.1 degrees in the middle of the night.  That crazy Basillus Cerious bacteria was back. It had gone dormant in his port line and then decided to rear its ugly head again.  So his new double lumen port he got placed in NYC was removed last week.  

The doctors wanted to give his body a week to clear the bacteria before they placed a new line. So he had an IV in his little foot for two days and was stuck like a pincushion.  Seriously, it was awful. Then he got a PICC line placed in his upper arm, which he still has. We don't like it as parents, and neither does Case.  And apparently one of the lines isn't working now. Don't know what's wrong. So 

we are working on having a double lumen Broviac placed tomorrow. That means surgery again.

But that's the least of it. I was planning on posting all about our San Francisco trip, which was supposed to commence Saturday.  Notice the past-tense used of "supposed to"?  Case had a CT scan on Monday which, to our horror, showed considerable tumor growth.  It also showed a slight effusion (fluid settling) around both lungs...remember the horrible chest tube escapade?  His platelets are also incredibly low and can't recover, despite donor infusions.

So all of that combined means no MIBG treatment in San Francisco.  We are devastated.  Apparently the treatment just isn't effective against such rapidly growing disease, as it needs to be stable - or not growing.  The doctors also aren't willing to do the therapy if the effusion increases and he needs a chest tube.  He would be draining radioactive fluid...not good.

So we are gathering information and trying to make a new plan. Right now we are planning on doing a chemo combination he hasn't seen before: irinotecan and temodor. This has worked before in kids like Case to put them back into a stable condition. It would never be the cure. That's what we were hoping for with MIBG therapy.

On top of all of that, Case is miserable! We are all thinking he has a stomach bug right now. He has really painful retching and can't eat for the past two days. Poor baby. All in all, we are all a nervous wreck on behalf of Case and his comfort level. We have no idea what is going to happen.  

Prayers on behalf of Case's comfort, our peace of mind, and for inspiration for the doctors would be much appreciated.  Thank you!

It's On!

Just a quick post...  Appointment went well today. We learned more about this scary treatment and will be back here on September 24 to begin treatment on the 26th. We will probably be in SF through October 3rd.

For 5 to 7 days Case will be considered highly radioactive and we cannot be around him. The first day each caregiver is given 15 minutes, which increases to 1 hour by the last day in the hospital. Following release from the hospital, for two weeks our contact with him is limited.  For example, I can hold him for five minutes but then need to put him down for the next two hours.  I am really struggling with that. But if this treatment could save him, I don't have a choice. This could be what saves him.

Tomorrow we fly home to Texas and will start our fifth round of chemo next week. Prayers are always needed!!

San Francisco or Bust

We received a wonderful surprise today in being able to go home after just one night in the hospital. Yippee! That usually doesn't happen for us! So we are home still connected to IVs for nutrition and antibiotics. We continue to switch between our roles as parents and nurses.

Now on to other things...

Eek! And Aak! And Ugh! And Seriously?! As of a few hours ago I will be flying out to San Francisco on Tuesday to take Case to a consultation appointment at UCSF for radiation therapy. We will have appointments on Wednesday and fly home Thursday.

Why does everything have to happen so last minute? There are no frequent flyer tickets available and Corporate Angel was already closed by the time I found out we were going. Thank goodness we have some funds from all of our awesome friends' fundraisers and generosity!

And also thank goodness that my mom and dad will come with me. They lived there for four years while my dad went to dental school, so they are my emotional support, chauffeur, travel agent, babysitter, and best of all, my mommy and daddy! Graydon will stay in Texas with Xavier.

The actual treatment would take place in about five to six weeks. We have one more chemo to do and recover from that will begin September 4th.  The treatment is called MIBG therapy. The technology is also used diagnostically with a scanner. Case has had several MIBG scans that show bright spots where there is live cancer in his body.

With treatment, a much higher dose of radioactive isotopes are injected into his body that targets the NB cells. He actually won't feel sick or get neutropenic like he does with chemo. The big problem = his whole body will be radioactive in and of itself. He has to stay in a lead-lined room with a catheter in bed for 3 to 7 days until he is no long radioactive. Which leads to another big problem = we are not allowed to spend more than ONE HOUR with him every 24 hours. So essentially he has to stay by himself...in a room...with IVs and a catheter...while he is radioactive. He is 20 months old.

So that leaves me as a big old ball of stress, which is a huge understatement. We wouldn't not do a treatment that could save his life just because it is hard. I am just scared and my heart already hurts for him for that isolation time. We apparently will have him mildly sedated during those days.

I feel like life just keeps getting harder and harder.  There is still so much to be thankful for, and I recognize that every day. It would just be easier for me to get through all of this crap if I knew he was going to make it in the end. It feels like the biggest slap in the face to think of going through all of this as a family and to lose him in the end anyway. I guess what I just wrote defines what faith is. A belief in things unknown. I have faith; now I just hope I have the courage to do everything I have to do.

Big Toe Monster

Last Friday we went home and it was so great! "Was" is the key word. Back in the hospital today. All because of a stupid little mildly infected big toe.  That, combined with his ZERO neutrophil count means inpatient antibiotic treatment. I bawled, like a baby! Don't know how long we will be here. ...sigh...

FC Dallas Best Case Scenario Night

We have some amazing friends who are really showing their support for little Casers.  Jon Harris and Lindsey Ellington have organized a fundraiser through FC Dallas, our local professional soccer team.  By purchasing tickets for the September 15th game through the link below, a portion of the proceeds will benefit Case!  As an added bonus, that day is Xavier's birthday, so your support will also be a gift to him!

Click here for the link to purchase tickets for Best Case Scenario Night at FC Dallas

Click here for the link to information about Best Case Scenario Night!

Chik-fil-A Day for Case!

Click  here if you want information for the fundraiser that my friends have set up for Case.  It will be Saturday August 25th at the Chik-fil-A in the Willow Bend Mall in Plano. A portion of everything you purchase will benefit Case.

Thank you to Lisa Bird and Cody Northen for doing this for us! I loved Chik-fil-A even before this!

Round Four of Five

I believe an update is in order. We are currently in the hospital (surprised?), but this is planned. We started chemo last night, round 4 of 5 of the standard high risk protocol. If all goes well without any complications (could life be so good?) then we will go home Friday. That seems so amazingly short and wonderful!

We were supposed to start chemo Monday, but we felt like we needed a CT scan before proceeding because we had some cause for worry.  With neuroblastoma a hormone can be measured in the urine, so in essence the increase or decrease of cancer cells can be measured through the increase or decrease of this hormone in his urine. Without going into more medical detail, we will call them "urine catecholamines." 

We have been testing every week and the last two weeks showed an increase...which led to me freaking out! The hormone levels can sometimes be affected by eating bananas, chocolate, vanilla, and by some medication. Case does eat bananas in smoothies I make, and his IV nutrition and his blood pressure medication (because he is an old man) have both been known to raise these levels. But we wanted to make sure.

So into the scanner he went! And we got "good" results. I put that in quotation marks because we would have preferred better, but we will take it! One spot showed a significant decrease, while the rest remained the same size. I have to remind myself of two things:

1. Thank heavens they are not BIGGER!

2. This is a scan we did three weeks after the previous scan. No one in the oncology world scans that often or expects to really see a marked difference in shrinkage in such a short time.

So I am trying to remain calm and take deep breaths.  Trying, trying.

Last week on Thursday we went home...glorious home!  We had such a fantastic time at home. Graydon has really been feeling the stress and separation lately, so it was a necessary break.  We got a trampoline in the backyard and have loved it! Case has started eating and walking around a lot. Remember his super skinny thigh in the car seat picture two weeks ago? Well, I can't help but feel them all day because they are gaining some more chunk. Hooray!

He has continued to be on antibiotics for the crazy Basillus Cerious bug that he got. I know I shared on Facebook but not here, that if this bug goes untreated it acts like Anthrax or meningitis. Seriously? Will life ever be normal? Nope. 

So at home Case is hooked up to IVs for 18 hours a day: antibiotic, nutrition, and lipids. X and I feel like we should be given nursing licenses because we have to hook everything up. We need to video us doing it, because it takes at least 45 minutes each time and it is intense. It's worth being at home though.

As thing stand right now and if they continue to be good, we will have one more round of standard high risk chemo in three weeks, followed by some crazy chaotic chemo that will permanently destroy his bone marrow and WILL require a stem cell transplant. I am dreading that because of the length of the hospital stay (they say to plan on 6 weeks) and for the risk of infection, as well as the strict seclusion to keep germs out. Mentally that will be tough!

Then we will do some kind of radiation, which is nasty, and some follow-up therapy that is a little undefined right now. Either way, we are looking at AT LEAST ONE MORE YEAR OF TREATMENT, and that's the good scenario. Trying to take deep breaths!

Next week we will be meeting with Dr Granger again from Cook Children's in Ft Worth to talk about some drugs that are not yet approved, but are still in phase testing. Scary, but exciting at the same time, as these drugs target a bit more of what Case is dealing with.

And as I have said before, there you have it!

Right back at the hospital!

I suppose we weren't too shocked when our time at home was short lived. Saturday morning Case woke up with a fever...something you cannot take lightly with a cancer patient.  X took him in to the ER (since it was Saturday and the clinic was closed) for some blood tests and some antiobiotics.

They got home around 4:00 pm.  As we were putting the boys to bed we got an urgent phone call from the hospital saying that one of the blood culture tests came back positive.  So X loaded him back up in the car and there they have been since!

We are still waiting for a specific culture test to show us exactly what kind of bug he has in him.  That information will let the doctors give him a very specific antibiotic that he can possibly take by IV at home.  For now he is taking a general antibiotic.

Our poor boys...Case for personally having to suffer through this experience, and Graydon for constantly having the family split up right before his eyes. 

Other than a fever (and I'm sure he feels terrible inside) Case has remained pretty happy.  There still is no more fluid or air accumulating in his chest or abdomen, and we are so so thankful for that wonderful blessing!!  I'll trade that problem for a fever and infection (not that we are okay with this, by any means).  I'm sure by the time Case is ready to come home it will be chemo time and we'll just move back in to the hospital. 

We are so sick of this!

Somebody pinch me

Are we really going home? Hooray! No more chest tube! Hopefully we can actually remain at home for the next ten days before next chemo

A little ray of sunshine

I am not sure exactly why posting is such a struggle lately, but an update is way overdue. And we finally have some good news to share!

Stem cell collection went really good! We were expecting to collect for about 3 days, maybe 4. But we got everything in ONE day! Not only that, but he collected an incredible amount. One of my very first friends that I made at Jasper High School when I moved to Texas when I was 14, Lauren Coutu, happens to be working at Carter BloodCare. This is the lab that collects, processes, and freezes is stem cells. Awesome! So Lauren was in charge of processing and freezing. She said that her boss has never seen so many stem cells in the periphery (stem cells pushed outside of bone marrow into the blood) before in a child or adult!

For one transplant, you need 5 million stem cells. We wanted enough saved up for 2-3 transplants. Um, Case collected 120 million in one 3-hour session. So we have 5 bags of 6 million stem cells and 12 bags of 12 million stem cells. In essence, Case could have almost 30 transplants... Not that that is humanly possible. But "Go Case!" We loved that little ray of good news.

Saturday night we were transferred from Children's Dallas to our usual location in Plano much closer to home. It is so much nicer to be 10 minutes from home, to have more visitors, and to not have residents milling around mucking things up.

On Monday we had a CT scan, which has been a horribly dreaded event for us, as most of them lately have shown growth. But, we got another ray of sunshine when this scan showed shrinkage in the tumors. HIP HIP HOORAY! Chemo IS working! So we started our 3rd round and are almost done. We will do two more cycles, then move on to radiation and a litany of other treatments. So we are very far from any safe place and we don't feel like we can confidently say "he's going to make it," but we sure do feel ecstatic about some good news! Now we just need to take care of every single microscopic piece.

On the chest tube front, not so much good news. This morning Xavier woke up here at the hospital to find the chest tube lying on the bed next to Case outside his body! He must have pulled it out over night, but never cried or made a fuss. Unfortunately since no one knew about it and couldn't address the issue immediately, part of his lung space filled up with air, and it was increasing as time went on. It was pushing his right lung into his heart...not a good thing!

So right back up to ICU we went for placement of a THIRD chest tube! This time I stood beside the bed holding Case's hand through the whole thing. I guess you can say we have both toughened up through the last few months. I cant believe I was able to watch all of that, scalpel and all. Let me just say he needs A LOT of sedation medicine...like seven doses...to go "under." He is such a tough cookie.

We are so incredibly sick of this effusion in his chest and the resulting chest tube (understatement of the century)! The doctors don't have a solution for the leakage either. He is fasting right now indefinitely in the hopes of drying out the leak. He is allowed to drink water and snack on pretzels, so needless to say he is losing weight right now! So please please pray that the effusion will heal and that the chest tube can be permanently removed, allowing us to go home some of the time.

All of these pictures are starting to look alike. Thumb in mouth, laying in bed, favorite blankie pulled up under his chin, watching TV. It's alright, I am not going to ask anything else of him!

So pray, pray, pray. Prayers of thanksgiving and for effectiveness of chemo, and for no more chest effusion!

Stem cell collection

So even though Case has cancer in his bone marrow, he still has "rock star bone marrow!" His blood counts have recovered at lightning speed, like they usually do. So the doctors had to hurry and slip him in for surgery last minute to put in place the tubing that will pump his blood out so that the stem cells can be collected. Once they are separated, his blood will be pumped back into him.

It's nice to have that happen ahead of schedule. We start tomorrow. Then we will wait for a CT scan next week to see if we have any shrinkage in the tumors. If all we see is growth, then we wont do chemo because there is no point in pumping him full of poisons that aren't working. If there is some positive progress, then he will get some crazy, super dooper high doses of chemo that will destroy his bone marrow, hence the need for his own stem cells to "rescue" himself.

He ate half a slice of pizza after surgery today. That was a nice treat to see, as he usually eats one pretzel stick a day. He was feisty too...and nice change from zombie mode.

Pray for good collection and for the chemo to be working! The red and blue tubes are the catheter. The other tube under the gauze is his blasted chest tube.

Here you have it...

I find it depressing to post here these days. Last week Case went home for two nights and one full day. Then we were transported by ambulance to Children's in Dallas to have another chest tube put in. His leaking lymph system (no better way to put it) just won't heal.

On Thursday or Friday he will have a catheter (a huge central line coming out of the skin) placed on his right chest side in preparation for stem cell collection. He will be hooked up to a machine that takes his blood out, separates the stem cells, then puts the blood back in.

After several days of that, he will be done and he will start another round of chemo. Only this time the chemo is so strong it will destroy his bone marrow... Hence the need for his own stem cell transplant as a way for his body to grow his bone marrow back. It all seems very counterintuitive to give his body back his own cancer-diseased bone marrow, but that's the way it's done. "usually" the cancer doesn't regenerate in the marrow... Um, sure hope not.

It's all very depressing, seeing as how the truth of the situation leaves us inpatient for weeks and weeks to come. I miss Graydon and my house, and my husband! A family of four, what's that? I miss the old Case that babbled and wanted to play or walk. He is so lethargic and literally lays in bed all day long, not needing or wanting interaction.

We have a long, long road ahead of us. There you have it.

Cancer Sucks

I have had some people say that they thought everything was great from my lack of posts. On the contrary, we are still in the hospital! We are day 3 into round 2 of chemo (total of 5 days). We are rounding out our fourth straight week here.

I would like to say that I have survived with grace and poise, but instead I have been filled with severe impatience, anger, bitterness, and resentment. Case, the poor little dude, has endured so much, I can't even begin to describe. I will say, though, that the hospital is made ten times worse all because of adhesives and tapes that are placed all over his body, only to be ripped off once they need to be removed.

He is chest-tube-free, but not because the doctors were okay with taking it out. Yesterday he ripped it out by using his feet! A nurse and doctor were changing the dressings on some bone marrow biopsies and we think his little toes wrapped around the tube and yanked it out! Despite the horrid pain and chaos that ensued, within 30 minutes he was already a new kid...for the better!

He has had several scans, whose results have not been too rosy. These tumors have proved to grow with a vengeance and aren't shrinking as easily as they did the first go around (hence the bitterness, anger, etc).

We are sick of splitting our time up between our two boys. We are sick of Case being so sad and continually being put through so many painful things. We are sick of bad news, and sick of hospital food! We hate cancer, and everything associated with it!

Our floor here at the hospital is shared with general surgery kids (tonsillectomies, broken bones, other non-sick surgeries). So I will also tell you that we are so sick of hearing these "sick" kids wailing because their leg hurts, only to be released the next day, and return to soccer practice the day after that. I can always tell if a patient is an oncology patient or not. Our oncology kids learn that it's not worth crying over every pain, ache, and prick.

The vague idea is that he could possibly go home next week after chemo is done and if we don't have any other things come up, which inevitably will. We keep praying for good results and that Case defies the odds and beats this nasty thing! Sorry for the downer of a post, but it's reality! Keep up with the prayers.

Pictures

The hair that is no more...

Graydon's "fort" in Case's room

TPN - IV Nutrition. White stuff is liquid fat, and the pee-looking stuff is minerals, vitamins, carbohydrates, etc.

Ignore the messy room, but check out our big corner windows and view of the surrounding pastures and pond. Every room here has this view.

Enjoying a popsicle

Looking like an old man laying in bed

This is the end of "This Little Piggie" song when the little piggie went wee-wee-wee all the way home

...and we are still in the hospital

Just a short note... Still in the hospital. We are at two weeks now...ugh. Case is doing so much better! His personality is back and it's so good to see him laugh, smile, and to hear him babble. I can't go into detail, but things were pretty scary at times last week, and I can't tell you how many times we have heard something to the effect of "this is a really dangerous tumor." Okay, we got the idea.


Case still has the chest tube and it is still draining, but it's much less. He is now getting a formula fed into his stomach through an NG tube (nasal gastric - tube in his nose), and he is being weaned off the IV nutrition. He is also eating a bit by mouth...pretzels and the like. We are both mourning the fact that nursing is over. Breastmilk is 50% fat, which is way too high for his leaking lymph system. I was told that it would be about 1-2 months until I could nurse him again,and then it would be time for surgery #2 and then it would start all over again. So we decided it was over...sad.


I spent the day home with Graydon and when I came back several bald, patchy spots on Case's head were staring me in the face. His hair is EVERYWHERE. I itch with his hair all over my arms. When he lost it the first time he didn't have as much. Now he has a full head of hair to shed. The pictures don't show that he has so much hair, but that's because his hair is the same color as his skin. His pillow is covered in hair. He touches his head and comes away with a clump stuck to his little fingertips. I hate this.


I am really hoping that we get to have the chest tube removed Wed or Thurs, which means maybe going home this weekend. It would be lovely to spend a few days at home together before coming back the next Monday to start round 2 of chemo. Here's to hoping and praying!

"Cap for Case" Leather Firefighter Helmet Raffle

CAP FOR CASE Leather Helmet Raffle: Case's uncle, Chris Hall (Allen Professional Firefighter Association), is raffling off a Cairns/MSA Sam Houston Black Leather Firefighter Helmet model N6AKD (bourkes and goggles included, est. retail $760) to help pay for Case's medical expenses and neuroblastoma cancer research. Raffle tickets are $10. The winning ticket will be by Case on September 11, 2012. Special thanks to Cairns/MSA for graciously donating the helmet for the raffle!

Medical Madness

We have had a rough week. We got home to Texas late Tuesday, June 5th. We "enjoyed" 5 days at home, and I put that in para thesis because Case was a mess. I know I said after chemo we had to deal with "angry baby," but it didn't know the definition of it. After surgery he was so bitter, angry, and unhappy. I can't blame him, but it made life miserable for everyone involved.

Anyway, the very morning he started to seem more like himself, we checked into our regular hospital here in Texas for his first dose of high-risk, high-dose chemo. He didn't even have a chance to be happy! This chemo is 4 times the strength of what he received before. Or doctor said it was like throwing a huge bucket of barf in his face! But the nausea proved to be not even the issue.

I noticed on Wednesday night that he felt hot and, lo and behold, he had a fever. He also was breathing shallowly. So long story short, by the next morning, he was transferred to the Intensive Care Unit and had a breathing cannula (the breathing tube that sits in his nostrils). Turns out he had a ton of fluid on his lungs. I think to date he has had about eight X-rays!

He was sedated on Friday, they aspirated some fluid from his chest (drew fluid out through a needle). That wasn't sufficient, so Saturday he had a breathing tube put in, a chest tube put in, and a small tube down his nose that goes to his stomach. A ton of fluid has come out (over 1000 mL), which is great. He got the breathing tube out and is not sedated anymore (he had been sedated for 2 full days).

So we are on the mend, but still have a lot ahead of us. The fluid build up is leaking from his lymph system, which apparently never healed from surgery. He had a lot of lymph nodes removed and apparently you can't stitch up the lymph system, it just has to heal on its own.

Want to know how it heals? He can't eat for 2 weeks. Yep, he can't eat. Doesnt seem right, does it? When you eat the lymph system carries away extra waste, so to get the lymph to not flow, you don't give it anything to cary away. He is on IV nutrition. I am just really sad because I can't nurse him at all, and that really sustained him through past chemos and stressful times.

So as if having cancer and going through chemo wasn't enough to deal with, we have even more trash dumped onto our laps. We will be here at least another week, if not longer. He is already neutropenia, so if he gets a fever, we have to stay longer. By the time he might feel ready to go home, it will probably be time for round 2 of chemo. Boo! I am trying not to think about that. As usual, just pray for our little boy. He needs comfort and he needs a brief respite from all these medical emergencies he is having. He has such a long road of treatment ahead of him, and these "road bumps" (so much more than that) are only prolonging the treatment and misery! Poor boy.

Drink More Pepsi!

The highlight of my 30-day adventure in New York was going home! Through an awesome non-profit organization called Corporate Angel, that coordinates flights for cancer patients in corporate jets, we flew home in style! My mom, Case, and I flew home on a PesciCo jet.The sent a car to come pick us up, no security lines, no showing ID, no taking shoes off! They carried our bags for us, we hung out in a posh lounge watching TV, had plenty of yummy chips to eat (PesciCo owns Frito-Lay) and drinks to drink! The plane itself was gorgeous and we were free to do whatever we wanted. I think the best part was landing... 30 seconds after coming to a stop, the door was opened, we were off, our bags were brought to our waiting car, and we were off. So incredibly fast and smooth. If there are any perks to living through cancer, it would be this!The man pictures below is the Vice President of PepsciCo that we were flying with.Thank you PepsciCo and Corporate Angel for being AMAZING!

Updates and Disclaimers

Check out this cutie!  This picture was taken the night before surgery.  Can’t wait to get him back to this.

There are new posts below to read.  It’s either feast or famine around here.

I have received a lot of emails and texts asking about how things are.  I apologize profusely to you for not responding yet, but please read these posts as your own personal reply!  Thank you for still checking on us, even when I never return the message!

And I have meant to make this DISCLAIMER for months and am finally doing it.  There will be typos, grammatical errors, and misspelled words on my blog.  It takes a huge effort for me to get these out and I don’t have time to read over them.  So please ignore the errors, and please know that I do have a college education!

Surgery Recap and The Plan

I know we should have been posting more frequently, but frankly, it is an overwhelming task sometimes.  To say that we have been on a roller coaster ride is the least.  Our sweet little boy has been through so much, and unfortunately, will have to go through so much more.  So I am going to try to be brief.

Surgery went well.  Dr L was able to remove 95% of the tumor.  What is left is some lymph nodes up high in his chest on the left side and some infected lymph nodes in his mesentery (i.e. a "netting" of blood vessels, tissue, lymph nodes and more that support and holds the intestines in their wiggly, curling space). 

Case literally shocked the doctors with his amazing recovery.  All time estimations of his recovery were slashed in half.  He was sedated for less than 24 hour after surgery.  Left the PICU about 36 hours after surgery.  Spent 5 days/4 nights in the POU and only 1 night on the "regular floor."  Case was discharged Thursday afternoon, not even quite one full week from when surgery finished (8:30 pm the previous Thursday).  He walked on the 3rd day following surgery.

So we are not all together too surprised by our strong little man.  One of our beloved Texas friends described Case as "one tough leather boot!"  So true.  Although he is so strong, it has been hard.  He has been so grumpy, the poor little guy. It is completely understandable as to why he is so grumpy, and I feel horrible watching him suffer and not knowing exactly how to help.  He is still behind in his communication and the lack of words is making for a really unfair guessing game.

 Eating has been really rough.  Thank goodness I am still nursing him, because that is the only thing he really wants to do.  However, since he is 17 months, that is not going to sustain him forever.  So we have seen him drop a lot of weight and get all skinny and "concentration-camp-ish" again. 

We are at our apartment just hanging out and letting him recover.  He came "home" with a drainage tube coming out of his abdomen.  It was removed on Friday, thank goodness.  We go in on Monday for one last check up and hopefully will fly home on Tuesday or Wednesday.  Xavier, Graydon, and my father-in-law flew home to Texas today, leaving my mom, me, and Case behind.

We met with Dr. Kushner, one of the Neuroblastoma oncologist up here at MSKCC, on Friday.  He was so amazing and spend over an hour explaining our upcoming treatment and answering all of our questions.  In a nutshell, we have a "plan" to follow, but a lot of future treatments will have to be determined as we go along, seeing how scans look.

• A week after we get home, on Monday June 11, we start chemo again.  Blah, not looking forward to it.  He will be there 4 days, then we'll have about 4 good days at home. 
• Then Dr. Kushner said that he will get a fever and have to be hospitalized for about a week before his counts will recover.  He will be getting about 4 times the amount of chemo than he got before - yikes. 
•  After that he'll have a CT scan to look at things post-surgery. 
• Then we will probably go in for stem cell therapy (more on that in other posts, I'm sure, but about 4 or 5 days in the hospital in Dallas). 
• Then he'll either start round 2 of chemo or come back up here to MSKCC for a second surgery to remove the lymph nodes that couldn't be removed in this surgery.  So I'm not sure if round 2 of chemo or round 2 of surgery will come first, but either way, he'll be getting both! 
• Then we'll probably follow up with radiation treatment up here (7 straight days) at MSKCC in conjunction with more chemo on those days. 
• After that...I don't know.  There is a lot more treatment that he could do, but we're hoping that's it.

Overall, we feel really hopeful.  Dr. Kushner really feels that Case will be CURED one day.  I feel like there is a lot of really yucky stuff (to put it lightly and to keep it family-friendly) ahead of us.  I'm honestly dreading it, but I'm trying to focus on the future...on Case starting Kindergarten...playing football in high school...going on a mission for our church...making me a happy grandma!!  In the here and now I need Case to start eating so that he can be as healthy as possible before crazy-yucky-chemo starts next week.

We are forever grateful for everyone's prayers, thoughts, concern, and good deeds towards us and our family.  Everything is felt and appreciated.  Now enjoy the pictures!

Angry and fasting before surgery

In the PICU all hooked up

On the bright side, our PICU room was right on the East River and we watched boats of all sizes going by

Awake the next day!

Breathing tube down the throat removed (still has nasal drainage tube coming from the stomach)

In the POU!

Getting "PT" from nurse Bonita.  He had so much fluid stuck in his lungs and he doesn't know to cough it up.  So you pound a little plastic thing on their backs to break up the fluid - he wasn't a fan.  Note that Graydon is doing it to Bonita!

Isn't he still so handsome, even with all the tape and the tube!?

First smile since surgery!  Notice no tubes!!

First "solid" feeding - jello

A brief smile with Daddy - these don't last long

I know this is a really sad picture, but I needed to post a "real" picture, not just the one or two pictures we got of him smiling.  It's easy to only post the nice looking pictures, but reality bites.

My poor, sad, sweet boy has been around way too many doctors and nurses.  Dr L gave him his stethoscope, and what does he do with it?  Puts it around his own neck just like they do after listening to his heart and lungs.  He did this of his own accord.  So cute...so sad!

Our hero, Dr L.  Again, Case isn't too thrilled!

Case at "home" hanging out watching TV (with his "tail" - his drainage bag).  So glad that is gone!