Thursday, December 29, 2011
Now that's something to celebrate! Case was happy too. His awesome Nurse Ginny decked out his room with sweet baby toys!
We are so thrilled to be on the downward slope. We just got home today from a 3-day cycle, and so far, so good. We are really hoping that Case doesn't feel as bad as he did last round.
On Tuesday, January 10th we have a CT Scan and MRI. This will be the first time we will see the progress that the chemo is making since we started. Again, we are having a love/hate relationship: we are excited to see what kind of shrinkage there is, but we are also so scared to maybe discover no change at all.
We are assuming that there is some shrinkage because he is acting so much better. When he's not recuperating from chemo, he's our sweet happy baby again. He liver lab tests are also improving with each test (remember that his liver was failing due to the tumor literally blocking all of its drainage ducts). So we have hopes and we just keep praying and praying!
Some people have asked for specific things to pray for. So if you are one of those, here is what we pray for: 1) that the chemo will shrink the tumor so that it can be removed by surgery, 2) that we will know how to help him cope with what he is experiencing, 3) that he will find comfort, and 4) that the cancer won't come back!!
We would like to continually thank everyone for their wonderful generosity, prayers, and love!
Case was so truly happy that night! He was giddy, like he knew what the night meant. I had to include this picture to show off his awesome Santa-style diapers!!
We even squeezed in a quick trip to see Santa (fortunately, for our new germ phobias, no one else was there. Phew!) We discovered on the outing that Graydon likes to tell everyone about Case. One of the first things out of his mouth to Santa was, "Case has a tumor, so he can't sit on your lap. He's taking medicine and it will take a long time to work." He's apparently listening to what we're telling him.
Wednesday, December 28, 2011
Our sweet boy turned one on December 16th and we had a great day! He was feeling good, as he was past chemo and his blood counts were all back to normal, so we celebrated as normal as possible.
We had a little party with family and our friends, the Harts, who are experiencing their own cancer battle with their daughter.
Case got some pretzels for his birthday, and was quite pleased, as you can see! He also got these cars from the Harts that zoom off when you pull them back. He was on the floor playing with them when I heard this high-pitched shriek. I thought something was wrong, but no, he was just so insanely excited! You can see how intently he's focusing in the picture below. It was so cute!
This is our awesome friend Brooke. Case and Brooke have a special bond with each other and I love seeing them together. Brooke and her sisters can always make him smile! When we were at Children's in Dallas our rooms were 4 doors away from each other.
Monday, December 12, 2011
There is a drug called Etoposide (or VP-16) that makes one's excrements a hazardous toxin, so in their own little toxic waste bin they go! His diaper has to be changed every 2 hours around the clock during treatment and two days following. Again, I am missing a golden opportunity for many dirty diaper jokes, I know.
Case LOVES bathtime! He has stayed in one for an hour once! He and Graydon just splash around and play with toys.
It is such an amazing comfort to have caregivers like her. To have them not only have the knowledge and skill to care for Case, but to love him as well is more than we could ask for.
Ginny, we love you and you can never quit your job!!
Thursday and Friday at home were some of the worst days we have had so far. Case just cried and whined, even while being held and comforted. It was awful as a parent to watch him suffer, not knowing what was wrong or how to help. And it was frustrating as a person after two days, which made us feel guilty. Fortunately Sunday found our sweet old Case again and he's back to being happy.
He has been on two anti-nausea medicines (Zofran and Atavan). Atavan is pretty strong and our doctor wanted to try something new this time. Well, that didn't work and we had some vomiting before we just switched back to Atavan. The side effects (dizzy - he falls over, sleepiness, and feeling out of it) are better than the vomiting.
So, we are now starting to see the darker side of chemo. It obviously makes him feel awful, as others have said, but it's the only thing to do. Friday night, after all day of crying, vomiting, and diarrhea, Graydon decided to add insult to injury by throwing up from something he ate all night long. It was a long weekend, but as I said, Case is back to being cute and smiley. Now we have two weeks to enjoy before it starts again. We go in two days after Christmas.
The pictures below are obviously before the yuckiness really set in. For the most part, Case enjoys being at the hospital and having all the nurses to coo at him!
Tuesday, December 6, 2011
Last week was a great week for Case and he, again, was really happy! His platelets were super low and he was bruising really easily, but other than that, he was happy!
This is a short post, but some people expressed concern because we hadn't posted in a while, so this is just a short post to let everyone know what's going on! We'll do pictures and more later.
Monday, November 28, 2011
Monday, November 21, 2011
If interested, go to Carter BloodCare to find the nearest location or call 1-800-DONATE-4. When you go in please tell them that you are wanting to donate to "Case Beckham, Sponsorship Number 051423."
Case says Thank You!
Sunday, November 20, 2011
My hardest day was the day after we first came home from the hospital. I had been at the hospital with Case for two full weeks and then all of a sudden we were home...no nurses, no doctors, no hustle and bustle. And I think I just had more time to be afraid. We didn't know at that time that he was MYC-N negative and I was just so scared that things wouldn't turn out well.
Again, as one can imagine, it's hard to function and take care of my family when I let that fear take over. It wasn't too long until I was reminded that our Heavenly Father is truly aware of us in a day to day function and wants to help us. Xavier and Graydon were at church, Case was asleep, and I was by myself thumbing through the magazine our church puts out, The Ensign, I turned right to an article called "Be of Good Cheer: Choosing Happiness." Sounds, from the title, like it was meant for me in that moment, and it truly was.
I shouldn't be surprised, since it happens all the time, that the Lord puts things in our pathway that we need. Read a paragraph from the article:
The Lord clearly promises, “In the world ye shall have tribulation” (John 16:33). When we acknowledge that we each face difficulties, that the Savior overcame the world, that He has lifted and strengthened and given vision to each of us in very personal ways, we will realize that we are never alone. We will feel a peace within even though the crisis without still rages. We will be filled with hope and even cheer. ...Amid all our mortal gloom and doom, Jesus Christ has overcome the world. Come, let us rejoice.
When reading that I could totally relate. Hard things are never taken out of our lives, we just have the option of making them easier to handle. So when I think of having Case's situation made easier for me to cope with, I respond with, "Please!!" I have truly experienced a peace that did not originate from myself. That fear that I felt the first weekend home has been eased through prayer and blessings. I do have things to be cheerful about! Case's cancer is treatable! Case is MYC-N negative! Case is home with us and happy! We have good insurance! We have the biggest and most loving support system made up of family, friends, and strangers! We have great doctors and nurses who love Case!
I know that Heavenly Father has a plan for Case and a reason for all of this yuckiness. But I also know that as his mother Heavenly Father is planning on me having a vision to see this thing through, and He'll help me, thank heavens! So each day I try to BE OF GOOD CHEER. It doesn't always happen, but I try!
His hair has stopped falling out, for now. Apparently it will go through the cycles along with the chemotherapy. The hairs that have fallen out already are the really long ones, or the ones that were in an active cycle of growing. You know when you pull a hair out and there is a little white ball on the end? Well, his hair didn't have that anymore...there was nothing holding it in! So what's left is a short fuzzy layer everywhere! It's cute.
So I learned some things from this round. We went in to the clinic at 1:00 pm on Tuesday for them to check his blood counts, since he can't do chemo without his counts coming back up. So by the time we got over to the hospital, it was about 4:00. Then his urine needs to be super clear, which really needs some IV hydration first. Then he can start his chemo. There are three drugs, and it takes about 3 hours. Then he has two hours of super-hydration through the IV. Then he needed a blood infusion, which takes 3 hours and they check him every 20 minutes. So we weren't left alone at night until about 3:00 am!! So next time I'm making our clinic appointment in the morning so that hopefully we can sleep at night!
So thanks to everyone for your well-wishes for Case's treatment. We are very happy that he's doing so well! He even has gained half a pound since his first treatment. Our next treatment starts on Monday, Dec 5th and will be three days. Hopefully we can get out on the third day and not have to stay a fourth night.
Monday, November 14, 2011
Chemotherapy attacks and destroys any rapidly dividing or regenerating cells. Those would include the cancer cells, but also the lining of the mouth, taste buds, hair cells, lining of the stomach, tear ducts, and bone marrow. I'm sure that there are more to add to the list. That is why hair falls out, tastes and cravings change, nausea and throwing up occurs, and why patients get anemic and have no immune system.
Last Thursday Xavier found one of Case's hair on his shirt. Xavier sadly said, "Oh no, not yet!" I thought it was certainly too early for that and that it was a coincidence. Then later, when nursing him, I found the crook of my arm covered in hair. So I ran my fingers through his hair and came away with about 10 hairs in my fingers! So since then he has steadily been losing his hair.
It breaks my heart. I was dreading this and it kind of slapped me in the face. I wasn't ready for it. He's definitely not bald yet, but he has lost most of the long hairs on top. I know people always think that he didn't have that much to lose, but it doesn't matter...he's my baby and he's losing his hair! He actually had quite a bit, but his hair is the same color as his skin and you just can't see it unless you're upclose.
So along with the good comes the bad. But along with the bad comes the good. We're just taking it as it comes, because that's all we can do! I definitely have my really hard days, but there are also really good days. So here's to another round of shrinking that darned tumor! Cheers...
Tuesday, November 8, 2011
The doctors also think that he had a reaction to a shot he gets after chemo, Neulasta. This shot is given 24 hours after chemo, and it helps the bone marrow and blood recover more quickly after treatments since they get attacked by the chemo. It has a delayed effect of one week. Since Case's bone marrow was squeaky clean and healthy already, the Neulasta kind of made it go crazy and over-produced white blood cells (he went from 1,000 WBC on Thursday to 38,800 WBC on Friday twenty-four hours later!) This can make people's bones ache. So that's why he was up all night and grumpy...his bones hurt all over! How sad! It makes my heart hurt for him, especially since he can't tell me anything!
Once we got to the clinic and then on to the hospital he really perked up! It must have been the crowds of smiling faces surrounding him!
So we got to do a 4-hour preview of the hospital in the Plano location. The nurses were in love with Case, and who wouldn't be? He was all smiles and proved to be quite a flirt! Every ten minutes another nurse would pop in, "I heard we just got a cute baby in!"
While I loved the Dallas location, I know we'll love the Plano location too. It's newer, and has huge floor to ceiling, wall to wall windows overlooking pastures with horses. And it's so nice being a 15-minute drive from home. So Case went home stuffed with red blood cells, pinker lips, and a preview into our future stays. We go in a week from today for round two of chemo.
Sunday, November 6, 2011
We have had a crazy year, which started with us selling our home, moving into a rental house, and building a new home. We moved into our new home on September 10th. One week later we left for a two-week adventure to visit Washington, D.C., West Virginia, NYC, and Boston. The trip was a little ill-timed, but had been planned way in advance.
Toward the end of the trip Case started to get fussy. Understandably, we blamed it on the stresses of traveling and not being at home. We got home late October 1st (Saturday). The next day Case literally slept all day. I woke him up at 11:00 to nurse and he went right back to sleep. I woke him a few hours later to feed again, and he threw up (on me). I jumped in the shower with him and he fell asleep in the shower. So I'm thinking, "what is wrong with my baby?" The next day Graydon came down with a fever, the typical 24-hour kid bug. So I blamed Case's sleepiness and fever on the same thing.
On October 4th (Tuesday) Case had his 9-month check-up. I mentioned the full day of sleepiness and fever and our doctor wasn't too concerned. He thought the same thing: little kid virus. That day he got a flu shot. The next few days he continued to be really fussy. This time I blamed it all on the shot. My kids are always grumpy and feverish after shots.
Then on October 7th (Friday) he cut a tooth. The poor kid had a raggedy piece of skin hanging from where the tooth came in...so I again blamed his crankiness on this horrendous teething occurrence.
Then on October 10th (Monday) he caught a cold. He lost his voice, had a runny nose, and a cough. The poor kid couldn't catch a break! The cold lasted a week.
So with all of these things one right after another, it was easy to blame all of his symptoms on his back-to-back sicknesses. For those two weeks he stopped sleeping through the night, and his naps were either really short (45 minutes) or really long (4-5 hours). He had always had a voracious appetite before, and now he only wanted to nurse. My super happy, easy-go-lucky kid was suddenly a super grumpy baby. His diapers started to dry up too, and then when he would have a wet diaper, his urine was really dark. He just wanted to be held all the time with his sweet head resting on my shoulder.
I was worried about him, but I couldn't pin my finger on one thing, especially with everything he had been through. So I tried not to worry too much and waited for things to pass. But then another symptom popped up that I couldn't ignore. On October 12th (Wednesday) I noticed that the corner of his eyes looked a bit yellow; just like a baby with jaundice. The next day Xavier noticed it too. My mom suggested that something might be wrong with his liver, since yellowing of eyes and skin can be a common symptom. Also, the next night at 1:30 am he woke up because he had vomited. He didn't have a flu bug and hadn't just eaten...it was just a random vomit that seemed very out of place.
So I made an appointment to see our doctor again on October 14th (Friday). Since I called that morning I couldn't get in to see our pediatrician, so I saw the nurse practitioner, who was brand-new. I told her all of the symptoms, including the yellow eyes. She checked him all out, palpated his tummy, looked at his eyes (made no comment), and ran a CBC screen on his blood. She called later to say that his white blood cells were not elevated, so there was no infection, and he did not have anemia. So we were to just watch him and ride it out.
I had been praying that if something was really wrong with my baby, I would know that we needed to get help. I tried to get that help on the 14th, and it obviously didn't get us anywhere. The nagging feeling that something was really wrong just didn't go away. That whole weekend I fretted about him. It made it more serious to me when Xavier was clearly worried too. Our baby just wasn't himself.
On October 16th (Sunday), we visited with some friends and neighbors, who clearly could see that Case was not himself. The yellow eyes were apparent and his change in personality could not be denied. I knew that we weren't just over-reactive parents. I decided that I would call the next morning to a doctor who had recently left our pediatrician's practice to get a second opinion. At the worst, I thought Case had some liver dysfunction that would need medication to correct it.
The next morning, October 17th (Monday), I called Dr. Kim Smith on the way to drop Graydon off at pre-school. I got an appointment with her that day at 10:30. So I went home to get a couple of hours of work in...just like any regular day. I woke Case up from his nap and ran out the door. Little did I know that everything in our world would come crashing down!
First, I must say that I know that Dr. Smith was an answer to our prayers. She was observant and listened to everything I had to say. After explaining everything that had been going on, she felt his tummy and checked out his yellowing. She calmly told me that she was very concerned for our baby. She told me that his liver felt twice the normal size. She took Case in her arms and told me to call Xavier and have him meet me immediately at Children's Hospital (the campus in Plano) to have blood tests and a scan.
That is when the panic started to rise in me. I burst into tears and told X to leave work right away and to meet me at the hospital. I am thinking somewhere along the lines of Hepatitis A (from exposure from our long trip) or, again, some sort of liver dysfunction. Something is definitely wrong with my baby and I cried all the way to the hospital.
We get there and my parents and sister meet us there. We go into the ER and get Case hooked up to an IV. His blood tests come back relatively normal, so we moved on to an ultrasound of his belly. Xavier and I were with him during the ultrasound and I had such a sick feeling. I couldn't bear to look at the screen. The ER doctor came in a bit later to tell us that there was a "mass" in Case's abdomen that looked like it was coming from the liver.
"Okay, I'm freaking out internally, but calm on the outside," I think. "Liver dysfunction...just what I thought. 'Mass' definitely means benign to me." Then the sweet ER doctor looked at us and said, "I've called the oncologist at the Dallas Campus and I'm going to have you transferred down there."
I'm just trying to register all of these words and I remain calm. Then I look at my mom and she has silently started to cry. All of a sudden I'm on high alert and I think, "wait, she just said 'oncologist.' That's a cancer doctor. Why did she say that?" I asked her point-blank..."do you think my baby has cancer?" By now we're all crying and the ER doctor starts crying herself and says that she can't be sure, but it looks like it might be.
Confusion, shock, bewilderment, and agony all rip through me! The unknown is now the enemy, and I talk myself into believing that my baby has a tumor, and that the biopsy will show that it is benign. We wait for a transport team to take us down to Dallas in an ambulance. My darling baby has now been going for about 6 hours without a nap and they don't want me to feed him, just in case he goes in for tests that night and needs to be sedated.
Two paramedics strap Case to a gurney, and the ride in the ambulance was a long one. I switch back and forth between silently crying next to the ambulance driver and convincing myself we are just having a quick surgery to remove a benign tumor. When we get to the hospital I follow the transport team through a maze of corridors. When we walk through the doors of a unit and I pass the big sign that reads "Center for Cancer and Blood Disorders" I am partially in denial and partially gripped by horrible agony.
I keep thinking, "this morning I was just dropping off Graydon at preschool like a normal mom and now I'm in the Center for Cancer and Blood Disorders at Children's Medical Center? This isn't happening!" It is every parent's worst nightmare.
So there you have it...this is how it all began. Fortunately, through the next twelve days of being in the hospital we learned that there is hope and that faith is real. We have come to accept this new life, as denial would only be detrimental to our family. We have already learned valuable lessons from these past three weeks, and know that there are many more to come.
Wednesday, November 2, 2011
Stage 4 Neuroblastoma in the Abdomen
There are NO neuroblastoma cells in his bone marrow, bones, liver, or soft tissue... Hooray! These are all areas that neuroblastoma spreads to, and Case has specific tests and scans for each of these areas.
It is Stage 4 because, aside from the large tumor in his abdomen, there is a tiny little tumor deep in his chest in between his spine and lung (though it does not go into either of these areas). The Stage 4 classification over Stage 3 doesn't devastate us because he receives the same treatment either way. Dr. Pass felt like it isn't a true metastasized tumor, but a secondary piece from the original (or something like that).
So we are looking at 8 cycles of chemo, approximately 3 weeks each. There you have it.
The picture below is as close as we got to any Halloween activity. We put on the bear outfit just long enough to snap a picture. On Halloween we had our first clinic visit, which was also our first visit to the Center for Cancer and Blood Disorder (CCBD) at the Children's Legacy campus in Plano. We decided that we love our new doctor, Dr. Appell, and everyone else in the office.
Case's white blood cells (WBC) are extremely low. We knew this would be the case, as that is what happens with chemo, but his are REALLY low. For example, when your number hits 0.5 or lower, you are considered "neutropenic," or very susceptible to infection. Your body basically does not have the ability to fight off even a cold. Last Friday Case's number was 4.56. On Monday he was 0.1!! Zero point one! Some people on chemo don't even reach the neutropenic level of 0.5, let alone 0.1!!
So Dr. Appell just forewarned us that Case will get sick in between cycles. It's just inevitable; even if he lived in a bubble. So we are still sanitizing ourselves and the entire house every other second, but we know it will eventually happen. Unfortunately, due to his age, that means hospitalization. So don't be surprised when that happens! We are being careful though. Since Monday Case has not even stood at an open door, let alone venture outside.
But...the most important things are 1) That he's MYC-N Negative!!!! and 2) That he's HAPPY!
Everyone, we can't thank you all enough for all of your prayers! I know that Heavenly Father has been inundated with prayers concerning Case and we love it! Thank you for your specific prayers concerning the MYC-N gene. We know that this was an answer to thousands of prayers. Now we just need this boy to remain stable in his weight (not lose anymore), remain infection-free, and withstand the chemo and let it do its job!
Thank you for every one's outpouring of love. It is definitely felt!
Monday, October 31, 2011
Saturday, October 29, 2011
The poor guy has been through so much. We can already see many changes in his physical appearance. He has lot a lot of weight. For those living close, you know that Case has always been a chunker, in the true sense of the word. Yesterday, after all the swelling from the IV fluids finally went down, we were shocked to see how much weight he has lost. His skin is soft and saggy in some areas, like someone who has experienced an extreme weight loss. He now feels like Graydon did as a baby, who was always super skinny. He has his appetite back and is eating some solid foods, so hopefully we can help him gain some weight back. At least he started out with rolls to lose!
We've already noticed that his eyes now have a gaunt, dark-circled look about them. It breaks my heart every time I look at him. But no matter what changes he goes through, we are so happy to have him at home with us. Big brother Graydon is very happy, as you can see. He has been very gentle and always asks before he touches him.
We have gone home on two anti-nausea medications, as Case has proved already that vomiting will be a trying side-effect of the chemo. Fortunately we have been vomit-free since coming home. We are sanitizing our hands constantly and being ever vigilant about anything and everything that comes into our home! His white-blood cells will reach their lowest this coming week, which means he will be the most susceptible to infection.
We have two clinic appointments this week where they will check his blood counts and liver functions. Because the tumor is so large and pushing on the liver (blocking some of its ducts), they need to make sure his liver functions aren't worsening, hence the two visits a week versus the regular one visit. In two weeks will be admitted back into the hospital for round 2 of chemotherapy. It's strange to dread something and want it desperately at the same time.
Again, thank you so, so much to everyone who expresses their feelings to us. It is a comfort (especially now that we are confined to the bubble of our house) to know that people are thinking and caring about us. We have already benefited so much from people's dinners, care packages, and goodies. Thank you again so much!
Keep praying that Case will be MYC-N negative and that the chemo will target his tumor with a vengeance!
Thursday, October 27, 2011
Here's our little policeman, buff muscles and all.
Here we are...I'm dressed like a mom and Xavier is dressed like a man needing a shave. Inventive costumes, right?
Look...he's smiling! Hooray! I am really anxious about keeping him healthy and germ-free at home. His white blood cells (or the "infection fighting" cells in his blood) are at the lowest 7-10 days after chemo. So next week I'll be paranoid about our trial run at home. Keep praying that all goes well and that Case can remain infection free!
Prayers are answered, of this we know for sure!
Wednesday, October 26, 2011
We expected chemo to start with a little bit of a hub-bub, but no, it's the little IV bag pictured below. It goes into Case's port (on his chest). It first starts with 30 minutes of Zofran, an anti-nausea medicine, which doesn't really do the trick. Each chemo drug takes an hour, and he gets a different cocktail mix each night. That is so that the tumor doesn't build up a resistance to one drug.
At first we were so excited to start chemotherapy because it marks the beginning of treatment to get rid of this nasty tumor, but now we're over the excitement! We knew that chemo would be hard, but it's really sad and difficult to watch Case suffer so much. He has thrown up several times, which is particularly sad as he hasn't been nursing much. His blood pressure is high, and he is having bloody diapers. All of these are side effects of chemo.
The most tragic side effect of chemo is the sadness experienced by this little boy. He whimpers most of the time and doesn't smile anymore. We miss his smile. You can see in the pictures that he just plain old sad!
We know that this is the road to recovery and we are so thankful for the doctors and hospital that make all of this possible. We just really hope that future cycles are a little easier and that it works!! We have spent a lot of time just holding our baby, as that is the only thing that brings comfort.