Monday, April 28, 2008

MRI today

Jovee's getting an MRI of the liver and primary tumor right now. We're just killing time, waiting for her to get out. She had to be sedated because it's an hour and a half long procedure. She's done fairly well today even though she had to fast. No solid's after 4:00 am, no liquids after 10:30 am. When she got her IV Needle in today, she screamed louder than any other time. On the way to the hospital, in the van, she said, "Mom, I don't want to get poked, I don't want to get poked". Hard time but what do you do? She's a trooper. We're going to go find out if she's out yet...seems a little long.

Friday, April 18, 2008

More positive news

Results from the bone and bone marrow aspiration came back negative - no evidence of disease there. Hip hip hooray.

Wednesday, April 16, 2008

Get to go home!

Everything looks good for now, just have to monitor her, make sure she's good. At home now. At work now so will write more later. Thanks so much for everybody's thoughts and prayers.

Isaiah 49:13-16 "For the Lord hath comforted HIS people, and will have mercy upon his afflicted. But Zion said, The LORD hath forsaken me, and my Lord hath forgotten me. Can a woman forget her sucking child, that she should not have compassion on the son of her womb? yea, they may forget, yet will I not forget thee. Behold, I have graven thee upon the palms of my hands"

Tuesday, April 15, 2008

Oncologist just gave us the news: nothing to worry about right now on the liver. Did not show any evidence of disease. She just got the report so wants to go over it again but overall it looks good; good meaning no neuroblastoma on the liver. From what she said about the liver is it could have bleed because the surgeon took more than one sample. So more than one sample was examined and again, no disease but she's going to look at it again since she just got the report.
Jovee hasn't moved too much, just sleeping and laying on the bed watching TV. We're not supposed to move her much right now, have to be gentle on the area around her stomache. However long it takes for her to recover and be comfortable is fine with us. We just hope that she recovers well and that the bleeding will completely stop. Can't be too careful since it was internal bleeding.
Very thankful for the good news. She is considered in remission. For those who don't know, relapsed neuroblastoma is considered fatal. Not many, if any, relapsed neuroblastoma patients are cured, just prolonging of life.
As far as the primary tumor, it's still there. Could be ganglioneuroma. Dr. F thought we could explore the possibility of going to Seattle to have it looked at, second opinion, and ressected. Problem is that the tumor/ganglioneuroma is completely surrounded by blood vessels and arteries.
We'll stop thinking about tomorrow and just cherish the good day today of the great news.


After they gave her a blood transfusion they measured her hemoglobin again and it shot up to 11.7. Good numbers but that was right after the transfusion so the numbers were a bit skewed. They're going to monitor her closely and take labs again at midnight and 6 am. I called Jeannine at 10:30 pm and she said Jovee was stable and doing good; she even got up and peed in the toilet. I left at 9 pm and she was still sleeping. Dr. Thorne said that her blood pressure was looking good. They considered operating on her, patching up the bleeding in the liver if things didn't become stable. There would have been another scar about 3 inches long if they would have operated. What's another battle scar when you have a billion? Well, not a billion but you know...
I forgot the digital camera and camcorder. I usually bring it. Today would have been a good day to have it, for memories sake. Man, I can't believe how white she looked. Almost a full blooded caucasian instead of a half Asian girl. My prayers tonight is that she's comfortable and will sleep peacefully. I was thankful that all the doctors and nurses worked so expediently and cohesively today. To think that it was just supposed to be an outpatient procedure today. This afternoon's experience definitely ranked as the scariest moment with Jovee.

Monday, April 14, 2008

Scary Incident

They didn't give her that much anesthesia, she had a hard time waking up from the biopsy...she became really pale so they wanted to monitor her more...come to find out that her liver bleed more than the doctors wanted to see...the blood flowed around her belly, not in her stomache...analogy is normal child has a full tank of blood at 14, she bleed a lot because of the liver biopsy, bleed down to half a tank of blood to a 6...they called us and asked us to come to Pediatric ICU...we got there before they transported her into room 308...all of a sudden all these surgeons and doctors came rushing in the room with all these medical terminology and "she's bleeding at the liver"...they hook her up to all these cables, Jeannine and I are just standing there, didn't know what they were doing...all we saw was she was white like the hospital blanket, her blood pressure is down to 64/34 on the monitor, the ultrasound doctor says she's got blood in the belly...

oh my!!! that was really scary. that was around 5:00 pm. now they're giving her blood and her heart rate and blood pressure and skin color is looking better. she's sleeping right now. they want to watch her over night so we're admitted for a day or two.

wow, what an eventful hour and a half!!!!! I was scared but have calmed down now.

Biopsies underway

Jeannine and I prayed really, really hard when Toby, the nurse, poked her right hand. No problem, she got to the vein the first time. That was nice. Jovee still cried. I don't think the numbing cream really works. At the point of contact she squints and you can tell that she feels the penetration of the needle. She's been pretty quiet today. I think yesterday, playing with the cousins, really wore her out. She didn't have a nap and was up until 11:00 pm, still lively. Jeannine, Jovee, and I stayed up for about half an hour watching funny YouTube videos. Jovee likes watching the animal bloopers.

Anyways, we might get results back tomorrow but probably Wednesday. The doctor that is doing the biopsy of the liver said probably 48 hours but could be sooner. We are just hoping that whatever the results are that they will be 100% accurate. If it is spreading then we'll plan out the best plan of attack, which could be New York's Memorial Sloan Kettering. If it isn't spreading into the liver we still have to do something to attack the primary tumor because it shows growth. Go, fight, win!

One of the ladies here that is head of an organization called Candlelighters lost her husband at age 36 of cancer (April - didn't ask her how long ago), 12 year old daughter of cancer (August - same year), and her 10 year old son of cancer - all different types of cancer. We're amazed at her brightness of hope and positive attitude. She's a good person to talk to when we feel bummed out.

Anyways, Jovee should be just about done right now so we got to go. Thanks.
I’m going to miss our backyard view because lots of houses are supposed to be built in the field behind us. Time to start looking more in the country with less houses around us.

Jovee was sick Saturday morning and afternoon. She was just really lethargic, didn’t want to do anything, wasn’t the spicy Jovee that we know. She perked up in the evening though. We thought that if she was going to continue to be sick that the biopsy would have had to be postponed. She felt normal and well yesterday and this morning, although a little hard from having to fast, but overall she’s healthy. On Saturday night when she felt better, we went out to eat with the kids. Was a good dine out; we went over proper dinner table etiquette; no elbows on the table, asking please pass the whatever, excused from the table, napkin in laps. Who came up with all these rules anyways? We’ve never really taught them the etiquette thing but it seem to stick because this morning Tyson, Brooke, and Bennet all remembered them while eating breakfast.

Yesterday was a good family bonding Sunday. Just had the family over and had a nice pot luck and sat around and chit chatted and all the cousins played together. It’s always nice to hang out with family. It’s good that we all get along. Jovee definitely loves to be around family, I know that it brightens her spirit when she’s around her grandma and grandpa, uncles, aunts, and cousins.

I know that as parents we’re not supposed to compare our children but…Tyson had a small sliver on his toe, like really super small, that we had to try to squeeze and get out. He whined over this small sliver. Man, my boys are wimps compared to by girls. Brooke has a pretty high pain tolerance and Jovee is a tank. Said to Tyson, “Jovee’s going to get three long needles for biopsies and one (hopefully just one) for IV today. Just quit complaining.”

So far this rainy morning we’re trying to distract Jovee from thinking about her chocolate Pediasure. She has to fast 8 hours before the biopsy and nothing 2 hours before. She’s asked for her Pediasure many times this morning. That’s her only staple that she consistently takes so it is hard for her. She doesn’t eat or drink too much of anything else.

The plan today is check in at 11:30 am. They’re going to give her anesthesia to put her out, then poke her to get the IV started. Hopefully again they’ll find a good cooperating vein on the first try. At 1:00 pm, the bone and bone marrow biopsy followed by the liver biopsy. Most likely have to wait til tomorrow to get the results.

Jeannine and I are preparing for the spot on the liver to be neuroblastoma because of the wording on the finding of the CT Scan, “suspicious of metastasis”. But again, the little bit of hope that we have hangs on the fact that the spot did not show up / lighted up / enhanced on the MiBg. Our prayer is that it isn't neuroblastoma on the liver and also that if it is that we'll be at peace with it. We'll be anxiously waiting for the results.

Friday, April 11, 2008

OK, decent but still questionable

Finally able to talk to Dr. F. Her assistant says she sees about 35 patients a day. Given 30 minutes, that's 17.5 hours of work a day. Not possible. She's completely swamped. When we have time to spend with her and it's not zoo crazy, it's nice.

So she says that the only way to get 100% clarity is after the biopsy on Monday. It's going to be a biopsy of the liver, bone and bone marrow. She just said that the MiBg says there is lesion in the liver showing up on the CT scan but NOT lighting up on the MiBg other words, we don't know 100%. Even though it's suspicious of metastasis, we can hope for a miracle and have it be nothing. Please, please, please, please (if it's God's will) let it be nothing and just a fluke. I would be pleasantly surprised.

Nothing yet

10:30 am, April 8th, 32 pounds and 36 inches with lots of hair.

Still haven't heard anything as far as the interpretation of the MiBg scan. My interpretation is there is activity on the liver, there's an enhanced nodule 1.5 cm x 1.5 cm that showed up on the CT but not clarified on the MiBg, the primary tumor below left collar bone has minimally grown.

Thursday, April 10, 2008

Still have to wait til Friday

So the impression from the MiBg scan has some confusing words:

1. The new focus of abnormal enhancement in the liver is not metabolically active greater than background liver. It is therefore not perceived on today's study.
2. Persistent increased MIBG metabolism at the upper mediastinum.
3. The focus of MIBG metabolism in the left supraclavicular region which was seen on previous MIBG studies (but not to the most recent study 02/07/2008) is now once again evident.

The wording for #1 is confusing. The doctor was supposed to call me back to clarify but didn't. Contacted them at 9:00 am, heard nothing, so called them at 4:00 pm to find out doctor was supposed to call me but didn't and went home. So flipp'in frustrated with just being left to wait.

I tried calling the doctor that transcribed the findings and he wouldn't talk to me, said I had to talk to the doctor.

CT scans read stable for the most part. Also included "moderate to severe ethmoid and severe maxillary sinus opacifications.". Jeannine knew she had some kind of sinus infection.

Chest findings: A 1.4 x 0.9 cm ill-defined enhancing mass to the left of the esophagus near the thoracic inlet is probably minimally increased since the recent comparison where it measures 1.1 x 0.8 cm. No other mediastinal abnormality.

Abodomen findings:

1. There is a new, 1.5 x 1.5 cm, enhancing nodule in segment five of the right lobe of the liver. The liver parenchyma is otherwise normal. Impression: New 1.5 cm round enhancing nodule in the right lobe of teh liver suspicious for metastasis.

2. Persistent small enhancing nodule to the left of the upper thoracic esophagus at the thoracic inlet which was questionably minimally increased in size and currently measures 1.4 x 0.9 cm.

Her urine VMA came back and it did increase to 32. Was 29.4, before that 27.6. Again, higher the number usually means more neuroblastoma.

Yes, I'm pretty frustrated. Mostly frustrated because the doctors assistant didn't know how to put it in easy terms for me, the doctor was supposed to call me back but went home, the doctor that looked at the scans and interpreted it wouldn't talk to me, the more than likely metastasis in the liver, the primary tumor getting a little bit bigger than it was before, VMA level going up.


A New Day

Well, at least an hour and 15 minutes ago was a new day. I always try to think that what a blessing it is to wake up and start a fresh new day. Every day is a great blessing when I'm able to wake up again and learn from the previous day and have a better, improved day than the latter. Although yesterday was gloomy because of the new spot on her liver, today will be a good day because Dr. F will call first thing in the morning, at 8:01 am sharp, and the MiBg results will have been dictated and Dr. F will rethink what she saw on the CT scan and tell us "oh, I didn't mean to scare you, it was really nothing because the MiBg didn't pick up anything at all, no new uptake on the liver"...that's a new day, positive thinking, start your day with great news kind of day.

You know, Jovee's spirits have been very uppity. Yes, she's got the lingering sinus but she's definitely been very energetic lately. Yes, Tuesday's 7 poke day was tough but she's still very happy. Any time I want her to dance, I just bust out the tunes and she'll usually say, "Dancing with the stars" and do her groove thing. Yesterday, Wednesday, we were walking through WalMart and she was just chatting away and just happy has can be playing hide and seek. We were walking down the aisles looking for Jeannine and she was just yakety yaking...And tonight we had fun taking some movie star pictures. Brooke was sick when she got home today so she didn't join in. Usually Brooke and Jovee like doing the picture thing together.
We had her MiBg scan at 10 am today. We usually schedule it after lunch time because we try to plan it around her nap time. Even though we gave her Benadryl to try to get her to relax, she was wide awake during the whole scan, which takes about an hour. Like usual, she received no sedation. She put on her game face and laid there for the entire hour. She did get squirmy and cried several times but over all, for the little 3 year old champion that she is, she did great. The nurses are always surprised at how well she does. That's our little champion!
Thanks again to all that keep her in your thoughts and prayers. As the main theme of her blog states, "Believe In Miracles". If it's to be that a miracle takes place and all of her cancer goes away, than what a miracle! I oft times think that it's a miracle already, a daily miracle that we've had her for this long. Some parents of kids with neuroblastoma are currently experiencing much harder care than we are right now. I know every kid is different and at different stages of this fight. We're just glad to have her healthy right now and have her been pretty healthy overall. Be thankful for good health, for your good health, for your child's good health. Good health is...good.

Wednesday, April 9, 2008

Sombering day

Well, all in all, so far, it was somber news...the CT Scan from yesterday, April 8th, showed no change in the primary tumor on the left side....I say so far because we're waiting to hear about her VMA level (that's the urine sample that indicates neuroblastoma - high number, no good; lower, normal number should be around 8-10 on normal kids.) Jovee's # is still moderately high at around 27 and 29. What we are waiting on is the VMA, hopefully later today or sometime tomorrow.

The concern and disappointment is that there was an abnormal spot that showed on her liver (an area where neuroblastoma is known to show up at - well, neuroblastoma can show up wherever it wants to, really). So, one of 3 things:

1. She's had a bad sinus infection for the last 2 months and just the bugs/bacteria that's been going around could be what that spot on the liver is.

2. It's disease/neuroblastoma and is spreading.

3. It could just be some weird thing that showed up and wont' be there again when scanned again.

The MiBg done today will give us a better idea. Just waiting for results. Love the waiting part. Hopefully MiBg will show nothing (but sometimes the CT Scan can pick up things that the MiBg cannot and vice versa) and the VMA level will be steady.

But if the VMA level is higher than her steady upper 20's than the new spot on the kidneys will be a concern.

So the plan today is to wait for the results of the MiBg, wait for the VMA levels...we're planning to do a biopsy of the liver, bone / bone marrow sample, and possibly the primary tumor - all next week.

Another roller coaster of emotions today: waiting, anticipating, hoping for the best / planning for bad news, ...

Out of our hands, as it always has been. The natural man/woman in us needs to think unnaturally and always think big, think the big picture. Hard to sometimes, like right now.

Tuesday, April 8, 2008

Today was a rough day for Jovee. Toughs days make people tough. She’s tough. What a blessing it was to have the central line. It took almost 2 hours to get to the vein that could be accessed. The nurses started on her left hand, then left arm, right hand, right arm, left foot, right foot, then finally back to the right hand and they got a good vein. Oh it was painful to watch her get poked 7 times.

Tomorrow is the MiBg at 10:00 am. After the scan we meet with Dr. F and hopefully go over the results of today’s CT scan and see what the plan is for the next couple months or the near future. Much uncertainty. The only certainty is that Jovee is tough.

Wednesday, April 2, 2008

Just waiting

Still waiting to hear back from Sacred Heart oncologist. She was supposed to bring Jovee's case up with the Child Oncology Group yesterday. I think we'll know more of a decision and direction after her scans next Tuesday and Wednesday. Well, the tests are those two days which means results will be Thursday or Friday. Jeannine took Jovee to the doctors yesterday because she hasn't fully recovered from her sickness (pneumonia or whatever it is)...well, Jovee's got really bad ear infection in both ears. So another antibiotic to battle that. She's got lots of mucus and coughs a lot so her appetite has been anything but an appetite. Just mostly drinks her chocolate Pediasure.