Canada Update & Food for thought

Greetings all!  

Well, Val and the kids made it to Canada largely due to the efforts of our dear friends and Val's determination!  We will never be able to thanks our friends and family enough for how often and how generously everyone has come to our aid in times of need and those special, just because moment.  A million times, thank you!

While waiting for the updates digest covering a long stretch of months, here is an interesting read.  Potentially statistically outdated since the study ended in 1986 but frustrating that I can't find a comparative study which perhaps reflects more recent improvements in treatment and longevity (optimistically speaking). If anyone has come across more recent data, please do share the article in the comments! Thanks!  

Childhood Cancer - Long-Term Outcomes by PAC2

Mobilizing to Update!

Greetings all!  The Tale of Bella Blog is coming back!

While it has been some time since our last blog here, we thank the many of you who remain connected with Bella's adventure on our "A Tale of Bella" Facebook page!  If you haven't joined us there yet, please do so!

For those who continue to follow our blog, thank you so much!  Great things are coming, including:

• Recent updates, including the Air Canada debacle and pending press campaign.
• A digest of updates posted exclusively to our Facebook page.
• More links and ways to become active in supporting research and creating awareness of pediatric cancer.
• A few new surprises!!!

Again, you bless us with your thoughts and prayers through following our family's journey - please accept our heartfelt gratitude!

To discover how you can support our journey, help create awareness and fund cancer research or support other kids' journeys, please visit our links and, most importantly...

STAY TUNED TO THIS BLOG!  There is much on the horizon!

with many thanks and blessings,

Samuel Nordrum, aka Big Daddy

 Psychology Assessment Today!

 

Bella had lots of fun at a psy assessment today! She has another one on Thursday. When Bella was diagnosed last September, a CHOC psychologist met with us and Bella to do a baseline assessment of her. A year later she gets to meet with Dr. Dipinto again. Sam and I have noticed changes in her which of course anyone would have going through such a traumatic year. The assessment is more difficult

because much of the testing requires reading and schoolwork. Bella might have to be outsourced to a different office that has an assessment for children with limited vision. From what I gather from Bella, there was a lot of memory testing today. She said it was too hard to repeat examples to me today. With chemo and radiation comes so many side effects. Not only do these kids have to go through chemo and radiation, they also get the side effects of their cancer AND the treatment. Bella lost so much of her eye sight, she lost all of her hair, she was isolated in fear of getting germs, she is losing her hearing, and we have notice her short term memory is going. When she is thinking, her brain seems to get stuck in neutral. Things are always on the tip of her tongue but she just can't get to the information she needs in her brain. She is starting to forget which direction her letters and numbers go. She always asks me, "mom, does a "C" go this way or that way"? It's heartbreaking. You are born with a perfect child in every way. She is smart, beautiful, athletic, full of sassy and full of spunk with the sweetest heart! She'll do anything to get a laugh out of you. Then one day, cancer enters her life and strips her of her eyesight, hearing, memory and more. The treatment may keep striping her of things for years to come. The only thing that calms my nerves is that I am so lucky she is still here with us a year later. We pray the cancer stays away FOREVER!

Well, I digress, as I usually do when I refuse to go to bed for some much needed sleep. We find out the results of they evaluation in two weeks. We will keep you posted! Otherwise, Bella is doing great!! We have been trying to get her out as much as possible to hang out with her friends. She has been going on playdates once a week when her friends get home from school which she loves!!! Her hair is growing back and its so dark!!! She was a blondie before and she is definitely a brunette now! So far it appears she will still have straight hair. We try to get as much schoolwork done as we can amongst the Dr. appointments. She has another eye appointment tomorrow. Dr. Dipinto on Thursday and Occupational Therapy on Friday. She is a busy little lady!

Thank you all for such love and support! We are so thankful for the posts, pictures, mail, and gifts! We have been so blessed by all of our family, friends, and Bella fans!

Greetings all!  Our sincerest apologies for neglecting Bella's stand-a-lone blog - with how busy things have been, our time has been devoted to updating her Facebook Community page.

We will post a couple digest-style narratives to catch everyone up following this forum exclusively over the course of this weekend.  In the interim, however, we must take the opportunity to send out some thanks:

A very sincere thank you to Romney Snyder, Sue Mitchell Snyder, Kathy Raynsford- Nelson, Lauren Nichols, Pinky Harper & Haleigh, Valerie Johnson Nordrum, Linda Nordrum, Irene & Carlos Rivera, Susan & Chip, Allen & Julie Barker, Marilyn & Gary Parker with little Emma & Aubry, Jennifer Marx, the surprise Balloon Artist, Romney's friends and neighbors and the very many others who donated or purchased treasures or treats. We are so blessed and overwhelmed by the love generated by today's event. May He Bless your lives as much as you have blessed our family!

Caya comes to visit Bella

Well all on Sunday night, Bella was poked three times to find a vein. No luck. The transport team wanted to continue trying but I said no more. Blood was drawn to see if she has an infection and everything is negative so far. She had a CT scan of her chest on Monday to see the progress of the fungal/viral infection and it seems to be improving. Tomorrow is her last day of the fungal medication for her lungs. Yesterday we arranged for Bella to go downstairs to visit Caya are cat. Daddy brought Caya to the admitting area and we sat Bella in the car with Caya. We had to keep the door open for her I.V. pole. It was an extremely emotional reunion for Bella. She cried and cried and cried and hugged and hugged and hugged Caya. Pictures to come soon. Bella has been feeling great the past two days. She has been eating extremely well. She was taken off of her TPN(food through her IV). She is gaining weight. She has her first roll! I wish I could say that! lol. We are calling her tummy Pudge. It is a super cute little tummy! She is 52.5 pounds now. A month ago she was 45 pounds! There has been no talk about going home tomorrow. There is nothing in Bella's file about being discharged. If not tomorrow than hopefully Wednesday. Pathology reports are in. There will be discussions of Bellas case on Thursday regarding bella's surgery and Dr. Loudon's findings as well as her MRI results. All doctors come together to discuss what is going on with bella. As soon as we hear the outcome, we will let you know. We are so greatful for all of you! Thank you, thank you, thank you! NEGUing from CHOC! mommy

Weekend Update

Bella has had a mostly restful and food filled weekend!  She was in great spirits today as we ate a whole bunch, did crafts and commenced in general silliness, singing and dancing in bed.  It definitely seemed that we were on the mend and on schedule to head home Wednesday.

And yet, the drama continues: once we thought that we were on the road to coming home, Bella's routine changing of her port-a-cath access revealed the possibility of another infection.  Mommy was skeptical about the security of the tape Bella's previous port access last Monday.  That skepticism today came to pass with Bella's port needle showing some puss and clear fluid dripping from the needle's wound.

We ask that you please pray to our Lord that His healing hands thwart any possibility of a new infection.  Bella deserves to come home!  Please pray harder than ever for this.  We are so humbly grateful for the promising news we received this past week, and so grateful that Bella's condition is not as severe as it could be.  However, our little angel is desperate to come home to her kitties.  To help, Mommy & Daddy are making arrangements for a visit from the mammoth kitty, Bella's Caya, tomorrow - we were told that we could do this (we would drive Caya up to the entry of CHOC and Bella would be granted an outdoor pass at the permission of the Dr.s).  Hopefully, this will put a little band-aid on this heart broken little girl.  But, Lord, please, not another infection, especially at the negligence of those responsible for caring for our angel.  How much more discomfort must she and we tolerate???  Please Lord, this can't be your plan!!!

Thank you all for praying with us.  Trust me when I write that we read through your messages and your prayers...they help and comfort more than you could possibly know.

With so many thanks and blessings,
Sam (Poppa)

Thank You!

Thank you all for the continued support! Bella had a great day. There were a few painful moments but she did great. She is so strong with all the pokes, tugs, pulls of her tubes and needles everywhere. She had a line going to one of her arteries that was taken out today. So painful. The nurse pressed on her poor little hand for 5 full minutes with such pressure. Bella cried and cried. It was so devastating to watch. When I confronted the nurse, she said it was completely necessary because it was on an artery and not a vein. Poor little lamb. She got through it though. Bella got to see N.P: Jody-her favorite! She had visits from Dr. Loudon and N.P: Albert. We also were so lucky to see our Chinese medicine doctor-Ruth! We always look forward to these visits of wonderful acupressure and aroma therapy! Bella got a therapy dog visit too-miss Berkely! She is resting comfortably. If all goes well, Bella gets her train taken out of her head tomorrow. Also, if all goes well, we will be moving back down to 3rd floor oncology but to the Oncology ICU. We both fell asleep around 7:30 or 8 tonight. That of course means that we woke up around 10:30 for some snacks and a few rounds of tic-tac-toe. Bella feels around a bit more now. Are tic tac toe game is not using a pencil, it's an actual pegged game. Bella would feel the holes to find the slot she wanted to put her peg into and then bring it super close to her eye to make sure she got the right spot with her colored pegs. It's sleepy time! God is great, all the time! ;). NEGUing from PICU at CHOC!


P.S. I can't believe I forgot the most important thing that happened today! Bella had a very special visitor today! She got to see R2D2! This is the second time she got to visit with him! So special!