MYC-N Negative!

We found out today that Case is MYC-N negative! Woo hoo! This is really good news.

We're Home!

We're home! We came home Friday afternoon and have survived a full 24-hours so far. Case has loved being home. Even though he isn't smiley in these pictures, he has actually smiled more today than in a long while. You can tell he's happy to be home and out of the hospital! He really perked up in the hospital on Thursday night when they took him off the IV and all other tubes.


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!

Hem/Oc Halloween Party

The Hematology/Oncology floor at Children's had a fun Halloween party today, thanks to the Midlothian Classic Car Club. It was awesome! They had amazing prizes for each patient and their siblings. It looked like Toys'R'Us in the playroom. I've never seen a Bingo game have such prizes!



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?

Graydon wore this costume all day, and we let him because he is so cute! We had a bear outfit for Case, but he decided to sleep through the entire party! Party pooper.

One of the "Funnyatrics" clowns.

Graydon's prize was a band set, since he loves playing "Fresh Beat Band" (a show on Nickeldodeon).

I still have not gotten used to the amazing generosity and sacrifice of complete strangers. Our experience up here at Children's has been amazing. All the nurses, doctors, volunteers, and other patients and family have been so supportive and kind. It has forever changed me and has prompted me to become a better person!

Going Home!

This is Case's oncologist, Dr. Amy Pass. She is amazing! She has been with us from when we first got here and has held our hand through this emotional time. Last Friday I found out that she is retiring...as of this week! Eek! I cried many, many tears over this. Although we will miss her dearly, we will forever be grateful that she was in the right place at the right time to diagnose and set the treatment plan for our darling little baby. We know that she was an answer to prayers when she thought about Case all weekend long and made the inspired decision to move forward with treatment!

So the big news for today is that if all goes well and barring any new hurdles, we are going home Friday morning (everyone knock on wood)! Today has been a great day for Case and he has really improved. His fever has gone away, his blood pressure has stabilized, no more vomiting, and he has normal dirty diapers! So apparently these are all things that we'll experience with chemo, but will hopefully go away after his infusions.

.

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!

Chemotherapy, Cycle 1

So we are on the third and final night of chemotherapy, cycle 1. I wish I could say that it has been easy and breezey, but it hasn't been. Everyone says that the first cycle is the hardest (and I hope that they are right because this just plain old sucks!).

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.

This morning he was running a low-grade fever, which was really scary to me because we are trying avidly to avoid any type of infection. Fortunately his temperature is now normal. His liver functions are still off, since the tumor is pushing on his liver. So all of these things (vomiting, blood pressure, fever, liver functions, swelling) need to be resolved before we can go home.

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.

We are so thankful for everyone's thoughtful prayers and fasts. We know that our sweet little boy is loved by so many and we can't express our gratitude for everyone's love. Thank you, thank you, and thank you again!

Chemotherapy begins

Even though the final pathology results from last week's biopsy are not yet available, Case's doctor said today that she would like to begin Case's chemotherapy tonight. The doctor said she "lost sleep" over the weekend thinking about Case and feels strongly that there is no need to delay chemotherapy any longer. He had an audiology test today which he passed in preparation for chemo treatment. An audiology test is commonly performed prior to giving chemotherapy to establish a baseline to detect whether or not the treatment is negatively impacting hearing. After just one round of chemotherapy, the tumor is expected to shrink significantly and offer Case a little bit of relief. He'll receive 3 days of chemo (tonight, tomorrow and Wednesday). If Case's liver and other organs are doing well, they'll probably come home Thursday or Friday.

Case's doctor is classifying the tumor as a stage "three-and-a-half," mostly because she sees indications of metastasis to another possible tumor in the back of his chest near his spine, and it will be clinically classified as a stage "four."

Case's chemotherapy will be administered in 8 cycles, each three weeks long. Every odd treatment will be three days long and every even treatment will only be one day long. With each treatment cycle, they will alternate the types of medicine used so that the tumor won't build up a resistance to one type of medicine.  During the first week, Case will likely feel pretty nauseated. During the second week, he'll be very susceptible to germs (likely no visits during this time). And, in the third week he'll be feeling like himself again. At the end of the third week the next cycle will begin. At the end of 8 treatments, hopefully the tumor will have shrunken enough to remove it surgically.

We feel that this is a direct answer to prayers. Emily and Xavier want to express their gratitude for all your prayers, concerns, and well-wishes. Continue to pray that Case's body will handle the stress of the chemotherapy and that the medicine will do its job!

A blessing for Case

This evening, a handful of friends, family, and church leaders gathered in Case's hospital room where Xavier and several priesthood holders gave Case a blessing. It was a powerful blessing and the Spirit of the Lord was felt by all who were present. Case's grandparents, Colin and Sheryle Beckham from New Zealand were able to be there via Skype.

Little Case was noticeably bothered at times by the discomfort caused by the tumor in his abdomen, but he was pretty calm for the most part, and let family members hold him. He even cracked a smile a few times this evening.

Case had a bone scan on Friday, which the oncologist reviewed and said looked good. The radiologist will soon review it to confirm the results. Within a week-and-a-half, the results from the MYCN gene test will also provide extra information and will help the doctors know if Case will be considered "high risk" or remain at "intermediate risk." Chemotherapy will likely begin Wednesday or Thursday, which, we are told, will immediately begin to shrink the neuroblastoma.

We've added a link to an online photo album that we will update periodically which you can find on the right side of the blog.

Thanks to everyone for your continued prayers, support, and kind comments.

Initial Diagnosis

Yesterday (10/19/11), Case underwent a biopsy to determine the type of the tumor that was discovered in his abdomen near his pancreas, liver, and stomach. The team is 99% sure, based on what they've seen before, that it is a neuroblastoma, a type of cancerous tumor, and that it is at least a "stage III," presenting intermediate risk. Results from the biopsy should be received within a week, which will provide additional details about the tumor, and dictate the type of treatment that will be customized for Case.

The next step is to determine metastasis, or the movement of the cancer to other parts of Case's body. There do not appear to be any cancerous cells in Case's liver or pancreas, and the results of the bone marrow tests will reveal if any cancerous cells have spread to his marrow. A bone scan is also scheduled for tomorrow (Friday, 10/21). A MIBG test will determine if there are any cancerous cells in Case's lymph nodes and is expected to take place next Tuesday and Wednesday (10/25-26).

It is anticipated that chemotherapy will begin in about a week or so, and if he remains "intermediate risk," he will likely receive 6-8 chemo treatments in an attempt to shrink the tumor. Once the chemotherapy is completed and the tumor has been significantly reduced in size, it will most likely be removed surgically.

Currently, Case is recovering from the biopsy, and has an incision (approximately 3") on his lower abdomen and two smaller incisions on his lower back. They are watching his red blood cell count, and will give him a blood transfusion if necessary (to replenish blood platelets). We all felt pretty good about the doctors and the plan they presented today and we are very hopeful.

Welcome

This blog is about Case Beckham (10 months old as of today), who was diagnosed with a neuroblastoma (a cancerous tumor) on October 19, 2011. This blog is meant to help friends and family stay updated with the latest information about Case's treatments, and progress. Through this trial, our hearts have been softened and we trust that our Heavenly Father is aware of little Case, as well as all of His precious children.