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  Potentially statistically outdated since the study ended in 1986 but frustrating that I can't find a comparative study which perhaps reflects more recent improvements in treatment and longevity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!

Post-op

4/18/12
God is amazing! Bella is up tonight and eating saltine crackers and chicken noodle soup. Our baby girl has been through so much in the past 13 days! We thank God, Dr. Loudon, P.A: Albert and all of the doctors, nurses, assistants and prayer warriors who helped make Bella's surgery a success! Dr. Loudon and Dr. Albert came to visit us in PICU tonight and gave such great news. To everyones surprise, There was no tumor to biopsy! We are sooooo excited and thankful! There was a new finding that was resected for biopsy which was quite a surprise to all in the OR. When she was opened up it looked like snow had sprinkled her brain. Dr. Loudon scraped off about 30 pieces of "snow". (there was so much more). It appears that the snow could be calcium deposits. We aren't sure why its there and what is causing it. This is being sent to the Mayo clinic and we hope to receive the results in a week.

Some additional information about Bella and the surgery is when Bella opened her eyes in recovery, her good eye was obviously affected from the surgery. Her lid only opens maybe halfway and the pupil is extremely dilated. When we hold fingers up. She can see but she doesn't appear to have much muscle control of this eye. Today her eyes were not moving together. Of course we are hoping and praying this is temporary. Time will tell. We ask if you could continue to keep us in your prayers for Bella's recovery of her brain biopsy as well as her eyes! As additional information comes forth, we will continue to update you all. On Wednesday we will probably limit her visitors. If you are interested in visiting, please FB message me or text me. We want to see how she is feeling but most importantly, she needs the rest to recover. Blessings to you all!

Pre-Op info

Today has been a whirlwind! Bella was so much better today! Her spirits were better, she was smiling and wanting to do her arts and crafts. She had a visit from the beautiful Dr. Ruth who gave her one of her wonderful foot messages to tackle any nausea and anxiety! We sat and painted with acrylic paints while watching the movie Soul Surfer! It was our first time to see this movie! Bella was hooked immediately and after only watching (or actually hearing my narration of what was going on since our tv is so far away. Bella immediately said we had to buy the movie. I think she could definitely relate to Bethany the Surfer who lost her arm. we were able to meet with Dr. Loudon to ask any last minute questions prior to Bella's surgery. Bella will get a biopsy in the morning of the new area that is showing up on her MRI. If Dr. Loudon can take any additional tumor, he will, if he can do it safely otherwise, we will deal with the tumor after the biopsy comes back ( possibly with gamma knife radiation). Tonight we had another MRI (the contrast hurt a lot tonight. The contrast was put into her arm I.V. After the I.v., Bella had to have her port changed out, her arm I.V. Taken out and a blood transfusion. We are now waiting for two bags of platelets and there is an extra bag of platelets that will be in the O.R. For an emergency. Bella will be transported down to the O.R at 6:30 a.m. Tonight has been difficult with all that is going on with Bella but also what has been going on next door to us. A poor family lost their daughter tonight. All day long the friends and family have been hanging around the halls. Probably 30-40 people just waiting for their loved one to take her last breath. To see all the tears and he's all the screams and cries has been absolutely gut wrenching. Praying for their family tonight. The young girl passed away about an hour ago. they is still so much activity going on and I suspect it could be like this through the night.

I have received so many calls, texts, emails, messages etc. I will try to get to them soon. Thank you so much for all the support and wonderful prayers. Please pray for us tonight and tomorrow for Bella's surgery! A surgery is so scary especially when it's with your child, especially when it's with your child's brain. We pray for guidance for Dr. Louden and his team, we pray for no seizures, hemorrhaging, or strokes and of course we hope Bella doesn't lose any of her abilities with the surgery. Thank your! We will try to update when we hear anything.  (~Val aka Mommy)

Looking up!

Today things started looking up! Bella hasn't had a fever at all today! The doctor came in today and let us know about Bella's bladder issues. It is just swelling in the lining of her bladder from infection. I honestly am so confused right now from complete lack of sleep but her pain is not near as bad as it was last night. She is on a self administering pain machine. As soon as she feels pain, she presses a button and boom - some medicine goes into her line. Since she is a kid, and buttons are soooooo much fun to press, it is limited to one button press once an hour. The doctor said her lungs don't appear to be as bad as it was initially. She is quite sure she had a viral infection in her lungs. She still coughs which creates lots of pain for her raw little throat. Also her oxygen is a little low at times therefore she is on oxygen at times at night and in the day. Isabella improved quite a bit today! We hope to make more great strides tomorrow! She perked up with our dear friend Irene's visit today. Our first visit in a few days. Bella can't really laugh since it causes her to cough. The pain is severe enough to immediately send her into tears. So the visit was very quiet and low key. Bella had a surprise visit today from her favorite therapy dog, the gorgeous Nellie!!!! :) Sam took pictures with his phone so I have to make sure the picture gets on here! I am at home tonight with my sweet little boy tonight! I better get some sleep! We didn't have time to get through all the messages today. So many doctors, nurses constantly in the room. Hopefully tomorrow we can spend more time viewing everything!

Made it through all the procedures!

Hi all, Bella got through her day of procedures. More to possibly come. Although she wasn't her normal crazy, perky self, her spirits did improve today. Her anxiety wasn't as bad today either. Results have come back from the CT scan of her abdomen area. I think we have explained in previous posts that last night she started feeling severe discomfort when urinating as well as blood in her urine. She was negative for UTI therefore she had the CT scan today. We haven't actually spoken to a doctor yet since we just received the results within the last hour so we (with the help of our wonderful night nurse) are trying to figure out the crazy medical language on the report we received. It appears that she has thickening in her bladder lining as well as one of the following: cystitis, a hematoma, or a abscess in her bladder wall. More details to come when the doctor reviews the results in tomorrow. I am sure this means she will be getting an MRI tomorrow or Friday as well. Tonight she was put on TPA which is a self administering pain medication. She gets to press a button when she feels that she needs medication. Hopefully this helps with the pain she is getting when voiding. Thank you for all of the prayers and FB Love!! Bella's mommy -Val

Bronchoscopy & CT scans today

4/11/12


Update#1
Bella just went under. Should be now 15-20 minutes for the bronchoscopy followed by about 2 hours of recovery in PICU. Thank you for your ongoing prayers. Bella is in much discomfort in her throat and when she pees. From this procedure, we understand her throat will hurt more and will be coughing more. Please pray for her comfort and healing! Thank you all so much. Results from the bronchoscopy come in about 1 day and additional results from more expansive panels in 3 days or so...oops, she's ready! That's fast!


Update #2
Bella had another CT scan tonight. This one was for her bladder and kidneys. She had to Drink contrast (not fun). She is in quite a bit of pain when voiding and her back is hurting her too. We should find out results on the CT scan sometime tonight. Please pray! She has been through so much. Depending on results tonight, she may have to go under once again for an MRI of her kidneys. Tonight her spirits are slowly lifting. We are hoping for doggie therapy tomorrow! She desperately misses her cats at home. Her temperature was down today! Continued thank your to everyone that has involved themselves in our lives. We can't thank you enough

It's a fungus!

Good morning all.  Thank you again for your ongoing prayers and love...it is what sustains us and helps us persevere to NEGU.

As you may have gathered, yesterday was another rough day.  Nearly any change, new med or procedure stresses Bella out.  Last time I spoke with Mommy, Bella finally was getting some sound sleep which I'm hoping lasted through the night.

Tests for the flu came back negative. A CT Scan of the chest area was ordered based upon the x-rays taken a couple days ago.  The CT Scan revealed some nodules of a fungus growing in Bella's lungs.  The good news is that she's been on an anti-fungal medicine since Sunday.

Today, Bella will be moved up to PICU (Pediatric Intensive Care Unit) for a brief, 15 minute procedure.  An anesthesiologist will put her under for the procedure.  The fungus is a modestly serious situation as it can spread...uh, like a fungus (sorry, not trying to be funny but it just works there).  While Bella's under, the surgeon will send tools via a tube down Bella's throat to extract a sample of one of the nodules for analysis.  Based upon that analysis, they'll be able to more directly treat the fungus.

More good news: Bella's numbers are coming back up so she will be able to fight this infection (and others) more effectively with her body's natural immunities.  Nurses have told us that this is the absolute best way and they say, based upon their observations of other kids, it looks like a miracle when it happens!  We can't wait for that moment!

Daddy's taking work off this morning to be there through the procedure and for a family visit with CHOC's psych guy...Dr. DiPinto...we like him - he's funny, compassionate and skilled with his craft.

That's the update for today.  We can't thank you enough for your ongoing support through prayers to our Lord and savior and for the vibes of love you're sending through Bella's blog and Facebook page.

I'm sorry to say that we're still saying no to visitors at this point and likely will through the weekend.

with many thanks and blessings to you,
~Sam (Dad)

Tuesday April 10 morning update

Good morning everyone. Bella & Mommy have had a rough night. Bella's fighting something tough that comes with a very violent cough and a yo-yoing temperature and chills.  We'll be in isolation until they rule out the flu. Since she's just exhausted, we're asking that we take a break from visitors until further notice. We all miss you and are also so grateful for the visits we've had so far. We're so blessed with so many kind and loving and giving friends and family! Please continue to keep us in your prayers, especially our precious princess! With many thanks and blessings, ~ Sam

NEGU'ing from CHOC!

Sorry we havent had much time to post. Bella needs care around the clock. Sleep for all of us is hard to come by with nurses and doctors in all the time. She has a few hours of pep in her but then the fever comes back and she starts the vicious cycle of chills and 102-103 temp. The fever and chills are more like 6 hours apart now versus 4 hours but the each take about an hour to get rid of them. She is on 3-4 antibiotics and an antifungal antibiotic and today they started treating her for the flu. The took a chest x-ray today and she is now on isolation. Her lungs sound clear but her breathing is extremely shallow. Her ANC/White blood cell count still remains at 0.

As far as her MRI results. They certainly were not what we had hoped for. The is something that is much bigger in the pineal area but we do not know if it is dead cancer cells or new ones growing. We spoke with Dr. Louden, Bella's Nerosurgeon briefly on Thursday (prior to her nosebleed). Thankfully he was able to squeeze us in before a surgery. Unfortunately we had Bella with us since it was a spur of the moment meeting, so it is hard to ask all the questions we want because her ears sure can perk up at times. He needs to go in and do a biopsy but at the same time he will try to take out as much of the tumor as he can. He says he cannot get it all but he will do his best to get as much as he can. He is concerned of bleeding, also she could lose more of her eyesight and possibly all of her eyesight (Bella was there so I do want to confirm this with Dr. Louden). The surgery was scheduled for April 17th when her counts would have been high enough to withstand a surgery but now with everything that has happened in the last couple of days, I am sure this surgery could be delayed.

On a happier note, we had a better Easter than expected. The Winklemans showed up for a surprise visit as well as two new friends that we just met -Trisha and Melinda. On Saturday we got to visit with our dear friend, April as well as Bella's grandma and grandpa. Bella enjoyed the company and always perks up with visitors. We feel so blessed with all of the well wishes and the generosity of everyone!! Thank you all!!

Today we cannot have any visitors. For the future, since she is in isolation, I need to find out if we can have visitors. We will keep you posted!

NEGU'ing from CHOC! ♥ ♥ ♥
Val

Staying the weekend.

Written by Val
4/6/12
1:00pm


Thank you! Bella and I are going to have fun today going through the messages! Bella is definitely "blue". Last night and this morning she has been so weepy praying to go home and to get her old life back. As I was just starting to discuss happy pills as an option,with the nurse, a miracle walked in the door. Ruth! Our Chinese alternative medicine doctor. We will see what we can do with alternative medicine first to pep her up before going on zoloff. I guess many cancer patients are on zoloff for depression. She has pepped up enough to eat some Cheerios. She doesn't want to be here for Easter. Her nose and eye are still in a lot of pain from the nose packing. We are waiting for the Ear, Nose, throat doctor to make an appearance. We hope to get the packing out today but her platelets need to be at 50 to take it out. She will get her second platelet transfusion shortly to try to up her numbers. They are concerned to take the packing out just in case she starts bleeding horribly again. Her temperature goes down to 100 when she has Tylenol but after four hours it keeps spiking back up to 103. Thank you for all of the thoughts and prayers. It's so hard especially thinking about being in the hospital for Easter. val

Thank you for your prayers!!!

1/6/12 
1:00am


Bella is sleeping. :). Her eyes are shut but occasionally a little watery drop of blood makes an appearance in her eyes. Tonight she has a temperature of 103 and her last heart rate taken was 173. The nurse drew more labs to see if she is fighting something. She can breath but struggles a little since her one is full of packing. Tomorrow morning labs will be drawn to see her hemoglobin and platelets. Thank you, thank you, thank you for all of your kind words and prayers!! It helps more than you will ever know! NEGUing from CHOC!

Update from a very long day

Very long day. Bella is now stable and resting. Daddy's home tonight because of work tomorrow. Mommy's spending the night. We'll update the blog...Mommy might tonight. From promising news this morning regarding out next step regarding the mei results to an uncontrollable nose bleed, an ambulence to St Joe's ER where Bella experienced the most discomfort yet. By the time I arrived from rushing out of work to Bella screaming and bawling, begging to go home while then ignored her port access, shoved a peripheral iv in her arm and packed material and a balloon in her nose to stop the bleeding. We could do nothing but pray and promise her it would be done soon and continue watching her be tortured. Our poor little angel. Today's saving grace was the amazing Joy Mob on Tale of Bellathanks to Team NEGU and the Rees family. Bless you guys and bless everyone for your prayers and well wishes. It was the glue and courage that fueled us to make it through the day.

Joy Mobbed

Written by Val:
Taken from Facebook 4/5/12


Wow! Thank you everyone! We feel so loved. The joy mob certainly came at the perfect time. Bella has had a tough day, well actually an absolutely horrible day. On our way to Vons, Bella had a.nose bleed that was nothing I have ever seen before. Her nose was like a running faucet. It was so bad that she started throwing up so much blood and it eventually started coming out of her eyes. We were sitting on a bench outside of Vons trying to control it. Thank the Lord, that one of our friends from bellas school showed up. It was perfect timing. She hung out with us while we were trying to get the bleeding under control. After everything progressed so fast, we decided to call 911 to get some much needed help. Poor Bella hasbeen through so much. She has been pricked, suctioned and her noise packed. She has experienced a lot of pain today. Now that the bleeding is under control we are working on getting her blood pressure up and heart rate down plus platelets and blood transfusions. We were now informed that she has a temperature. Thank you joy mob and everyone for your prayers! Poor Bella is just sick of cancer at this point and wants to play and be carefree like she used to be. Daddy (sam) will be posting results from todays conversations with our oncologist and brain surgeon later tonight. valerie (bellas mom)

Late March MRI Results

Howdy all.  Foremost, a moment seldom passes when we don’t thank God for how His love for our family frequently shines through the love and many ways of support that blesses us through you!  We will forever be grateful and will never come close to expressing our gratitude to our satisfaction.

Tonight was a relieving fun night – a family dinner with a surprise bump into one of Bella’s schoolmates.  Bella and Liam were in bright shiny moods tonight.  It’s a treasure to see Bella and Liam laughing together.  Honestly, no words can describe how beautiful Bella’s smile is and how bright her eyes get when we make her laugh…a true treasure.

We know many are waiting for last week’s MRI results.  We received a CD-ROM of the MRI the same day and results on Monday.  Daddy’s curiosity got the better of him and spent a good portion of Friday to examine the MRI and the weekend to ruminate.

The many of you who are close to us know that the last couple of weeks have been very challenging for each of us.  From sweet Liam acting out in school to Bella’s unexpected daily trips to Clinic and Outpatient Infusion Center, cycle four of this “maintenance” phase has really taken a toll on each of us and revealed unpleasing results.  Honestly, without your love and prayers, I don’t know how we could have made it this far nor how we will be able to make it through the remaining nine months.

While Bella’s appetite has remained up since our stay at CHOC, from day 3 on she battled with nausea and vomiting.  The day following our return home after the extended stay at CHOC, a home nurse came out to train Val on administering the TPN.  Not only were we exhausted from the challenges faced during our stay at CHOC, it seems that every day we encountered a new problem with setting up the TPN.  The good news is that Bella’s weight is very slowly climbing and tonight was incident free in setting it up.  And, Bella just loves her little back-pack that carries the IV pump…you should see how cute she is carrying it around in one hand and her Bunny and Duffy in the other – adorable in a medically cryptic way.

Prayer Warriors, if you could please bless us with praying on the following…we’re looking for God’s big help on this one.

The MRI from last Thursday revealed a couple of unpleasant developments: 1) the original tumor, previously having shrunk dramatically, has begun to grow; 2) there is possibly an additional mass that we and the Dr’s hope is only scar tissue.  Bella’s neurosurgeon will perform another surgery to extract tissue for a biopsy of this new tissue.  Then we wait for Mayo clinic to provide results – last time that took about two weeks…another waiting game holding our breath and praying.  From the MRI report, it is difficult to determine if the Dr’s are concerned about scar tissue or gliosis surrounding the hole from her ventricular shunt surgery or if it is from a mass near her ear, referred to on the report as a “persistent left mastoid effusion.”  We will likely find out Thursday when the surgery will take place.  Our oncologist stated that if the tumor is an additional malignancy, there’s nothing additional that she can do to treat the tumor(s).  Obviously, this is unacceptable for Daddy and I have already research second opinion options.  Of course, with California Health Care insurance rules, our medical group allows acquiring second opinion but does not cover any treatment from the 2^nd opinion provider.  Ain’t that a kick in the teeth.

As for the original tumor’s growth, it feels as if we have taken a step backwards.  While we know the potential for a repeat malignancy is high, we were optimistic about our current treatment plan, especially since the success of phase one shrunk the tumor from the size of a golf ball to 6 x 6 x 4 millimeters in December’s MRI.  Even though the growth, now to 9 x 6 x 7 mm, is only 3 mm on two axes, the fact that it is growing seems to indicate that the current “maintenance” treatment is proving not as successful as phase one treatment.  The MRI report reads, "Interval increase in size…raises the possibility of recurrent disease.”

Naturally, this has been very disheartening news for us.  Val and I have not shared this information with Bella yet, so PLEASE be cautious if we get to see you.  It’s likely that we’ll probably be having a very emotional family conversation after Thursday’s appointment in which I imagine we’ll be discussing Bella’s future.

We’re hurting and, honestly, it’s been very difficult to write this post.  We’re begging God in prayer to not let the worst case scenario become so…we’re not ready to send our angel back home yet.  We pray He forgives our selfishness but Bella just has so much life and joy in her.  Please, please, please pray with us that the biopsy returns benign and absent of cancer.  Please pray that the original tumor stops growing and starts shrinking again.  Please pray for Mommy and Daddy’s endurance and patience and pray for understanding, comfort and love for little Liam – he loves his big sis so very much.

We’ll update as often as we can.  Our greatest hope lays in the promise of God’s undying love for us and for the unconditional and sustaining love from you all.  We’re so sorry we don’t have an uplifting post for you.  Thank you so much for your understanding and your ongoing prayers.  ~Val and Sam