Monday, June 30, 2008

Surgery Tomorrow...

I'm trying to keep my mind off of the Operation tomorrow. Unfortunately we won't even know the results of the biopsy for at least a week! They will have the initial analysis within 24 hours, but the final say will take about a week. This is gonna be a long week!!! Today we are fasting for Jada Rose and her health. In addition, we are asking others to include her in your prayers.

On a lighter note Jada is feeling pretty good. She still gets a horrible rash several times throughout the day :( But seems pretty happy. On Sunday we went to the first hour of Church and then came home. Andrea stayed for the remaining two hours while Jada and I read some books, watched cartoons, and took a nap. Below are some photo's of Jada when we first got home from church.

Friday, June 27, 2008

Plans for this weekend...

We are planning on taking Jada Rose to Lagoon tomorrow since cousins and friends will be going. Jada wont be able to go into large groups or engage in stressful activities for about two weeks so we are going to try our best and have an EXTRA FUN weekend! Hopefully we can get some pictures up on here again!

Thursday, June 26, 2008

Operation on Tuesday...

We saw the ENT Doctor today and Jada will have her tonsils and adenoids removed on Tuesday. Because all of her neck lymphs are enlarged they pose a considerable risk to PTLD (Cancer), the right front lymph is the largest, and it will either be biopsied or removed. This requires a small incision to be made under her chin on the neck. There is a slight risk for possible nerve damage due to the incision, so more O.R. time is needed. Jada will be in the PICU at least overnight. We will know the exact time of the surgery on Monday.

Operation to be scheduled today

At 9:00am Jada will be seeing an ear, nose and throat doctor. At that time they will notify us of the exact date and time of her next operation. It is anticipated that it will be within the next week. I will have more information at that time. Thanks for checking in.

We attempted to do family pictures yesterday and Jada was in a less then cooperative mood, she also broke out in a really bad rash, and the mosquito's were swarming! So we took a few pictures, and rescheduled on Monday. On the way home we stopped at Olive Garden

Tuesday, June 24, 2008

Definite Cause for Concern...

The CT scans came back and Jada's lymph nodes in her throat both front and back are enlarged. Its concerning enough to Dr. Book that surgery is being scheduled within days to remove the enlarged lymph nodes and have them biopsied to see if PTLD (Cancer) is present.

CT scans this morning

At 9 am this morning Jada Rose will be having some CT scans done to hopefully detect any possible signs of PTLD (Cancer). She will be sedated for 20 minutes. We will update as soon as she has come out and we are aware of any results.

Last night Jada Rose slept in her "Big Girl Bed" ALL NIGHT! We re-modeled her room using her favorite color (purple). Photos/video coming soon.

Friday, June 20, 2008

We saw the Doc yesterday...

First off Jada's Labs:

Her white blood cell count was up: GOOD

Her Platelet count was up: GOOD

Her Liver numbers were down: GOOD

We don't yet know her prograf level (immune suppressant)

We don't yet know her EBV level

Jada's Spleen was a bit enlarged: Not good

Jada still has a persistent rash throughout the day: Not Good

Her Tonsils are HUGE! Not Good

Basically Dr Book said that although we hope Jada would not contract EBV, it is something that would have eventually happened. It is possible that her new Liver had some EBV in it that was dormant until now. Its possible she caught it from one of us. Dr. Book said that pretty much everyone has or will get EBV throughout their lives. But your body will identify it and keep it at a relatively dormant level.

Dr. Book said many of her symptoms are indicative of EBV in transplant patients. We are to watch for any lumps or lesions. If EBV gets out of control it will cause a very nasty cancer. EBV can live in the tonsils. Therefore Jada is being scheduled to have her tonsils removed in the next two weeks. Also as a precautionary measure Jada will be undergoing several ct scans on her body to make sure her there are no Lymph irregularities.

Although this is not favorable for Jada as a whole, Andrea and I felt MUCH better coming out of the doctors office yesterday. The Liver Team at PCMC is FANTASTIC. We completely trust their opinion and judgment regarding Jada Rose. Dr. Linda Book is a miracle worker and frankly it is a treat just to hear her speak about pediatric gastrointestinal topics. She looked us both in our eyes and said "guys I know that you are nervous, but I'm not nervous yet. We knew this would eventually be an issue. And you know me well enough that if I were nervous, I would tell you." That was very comforting for us to hear.

Shannon was one of the nurses who informed Andrea that we were getting a liver transplant two years ago. She was working yesterday. We love her! She has been such a help to us as her own son who is now a healthy young man has BA and subsequently a liver transplant. Whenever we have something new happen with Jada we always ask Shannon "so did you go through this with your son?" Invariably that answer is always "YES!" then she tells us how it was for her, and how she got through it. VERY helpful! So obviously we turned to her yesterday and said "So Shannon did you deal with this?" She got that "you better believe it" look on her face and said " YES WE DID!"And it turned out fine. Thanks Shannon WE LOVE YOU!

We will update as soon as we find out the dates for the CT scans and Tonsillectomy.

Thursday, June 19, 2008

Such a BIG GIRL!!!

This morning Jada Rose had her labs. She did not cry AT ALL! Wow what a big girl! Seriously I think I cried when I had shots until I was like 8 or 9! Sure is a brave little munch kin! Patrick and Wanda (In PCMC LAB) were so impressed they gave her TWO toys! She got a Play Dow Owl Stamper, and a Choo Choo pencil!

Quick update:

Labs this morning.

Dr Appt this afternoon.

EBV results wont be back for 3-4 days.

Jada Rose is running at 3/4 impulse power.

But still laughs and jokes at any opportunity.

We will update after meeting with Dr. Book this afternoon.

Tuesday, June 17, 2008

Some comforting research...

As I have been reading anything I can find about EBV today I have noticed there are many many transplant patients who are EBV positive. For the most part their success comes from anti-biotic and lowering prograf. Therefore, I am just going to leave it at that for now! Apparently EBV can live in the tonsils so having tonsils taken out might even help? I dunno. It appears that my initial scale below is perhaps a little too steep. After spending time on LiverFamilies.org and reading about others battles with EBV early detection is KEY! We have early detection...I hope. So hopefully it is enough to give us the key to success I have been reading about the last few hours. The reality of that scale is likely wrong in Jada's case. I'll hope and pray that it is.

The Plan (for now)

Basically the most disturbing thing about EBV is that it can turn into (cause) a nasty cancer called PTLD. Look up PTLD online if you want to get depressed 58% of kids who get it don't live. The crappy thing is its difficult to detect. They will watch her labs closely. One sign of the "looming danger" of PTLD is the EBV count. Now from what I have read with other cases of transplant patients, this is the scale that seems to fit. This scale is in no way official but rather the pulse I get from others when their kids are being monitored with EBV.

EBV value = PTLD Danger

50-400 = Kind of scary but constant monitoring is needed

400-1000 = High alert

1000-4000 = Scary High Alert

4000-6000 = Dark Clouds are on the horizon

6000-20,000 PTLD is next to eminent

Jada Rose is at 6000

I put 20,000 out there because the Liver Clinic said they have kids who reach this level and that is when it gets stormy. Now as I stated above PTLD is diagnosed not by the EBV value but by testing separate strains of white blood cells.

So for The Plan:

We are administering anti-viral meds and taking her immunosuppresant way down. Hoping that her body will fight the EBV. Remember that for the sake of her liver, fighting is not a good thing. We don't want it to get attacked in this war we are in effect starting.

In two weeks the plan is to re-test her EBV level. From there if it is down, then we can breath a little bit easier and monitor the EBV for the rest of her life. If it is up...well lets just not talk about that right now ok?

Monday, June 16, 2008

EBV......$h# !

I'm at work and seriously do not want people to see my eyes right now so I am going to update whomever reads this with some shitty news we got today. Jada Rose has EBV. That is Epstein Barr Virus. This is a pretty bad thing...manageable, but bad. LiverFamilies.org had a post regarding it and it explains it better than I do...

EBV (Epstein Barr Virus) is a herpes virus; it's probably the MOST common virus in humans. Many adults will have copies of this virus in them, and not even know it. If you've ever had mono, you've got EBV copies.The reason EBV is so dangerous in post-transplant patients is because most immune-suprressive drugs (like Prograf) suppress the T-cells in the body. Suppression of these T-cells can cause the EBV to replicate uncontrollably in the body. The most typical EBV copies are attached to your B-cells, and suppression of your natural killer cells and cytotoxic cells (both T-cells) can cause these B-cells to replicate over and over, causing a high EBV titer.

This over-production of the B-cells is known as post-transplant lymphoproliferative disorder. Lympho = B-cell; proliferative = over-production (in layman's terms!). There are a couple of types of PTLD, but the distinction is usually not made as far as I understand.

Treatment usually ranges from lowering/dropping immune-suppressive therapy to allow the T-cells room to fight, to adding an anti-viral to try to combat the virus cells, to chemotherapy to suppress the tumors and the B-cell population.


So yah this pretty much sucks! Jada will have this for the rest of her life, and we will likely be fighting it for as long. EBV can lead to tumors, lesions, and cancer all pretty scary stuff. My poor sisters called me and tried to talk to me but I have some sort of defense mechanism that causes me to have a flat affect when I try to explain it. I can type this info, but the emotion of such thoughts and possiblities comming out of my mouth is simply too much right now...sorry Bird and Kat.

Perhaps the most difficult thing is the harsh reality of our situation: Jada Rose is a liver transplant recipient. We were told that a liver transplant was not a cure but rather trading one set of problems for a whole new set of problems. On the positive side, this CAN be managed. Its going to be a lot of work but we are capable of dealing with this.

ps. For the second year in a row Fathers Day was absolutely euphoric for me. I LOVE THIS LITTLE GIRL SO MUCH!

Monday, June 9, 2008

LOOOOoonnng post!

BREAKING NEWS!

First and Foremost JADA ROSE WENT POTTY IN A "BIG GIRL POTTY YESTERDAY!" We were very excited. We haven't been pushing her very hard to go potty in the toilette. So yesterday when she asked to potty? Andrea was somewhat surprised. She set her on the toilette and the rest is history!

HEALTH CONCERN UPDATE

A few weeks ago we were somewhat concerned about Jada's platelet count. Today they are running some more labs to see if the count is still low. Apparently normal is 150,000 or higher. Jada was at 130,000. You don't worry until it is well below 100,000. But they are watching it. Also we have been increasing Jada's dose on her immune suppressants. :( She is now at 90 ml, up from 80 ml. Overall however, Jada is very healthy!

REGARDING OUR LAGOON INFATUATION

I need to make an apology for all the Lagoon stuff. I realized I may have a slight problem when I asked Teya to watch Jada's Lagoon Video last week. Teya's first response was "it was...LOOOOOng" It occurred to me that this might not be as big a deal to others as it is to us. So please allow me to explain our obvious Lagoon infatuation: Throughout the week I am working 15+ hours a day, and when I do see Jada in the late evening her one request is "MONSTER RIDES?" So Saturday evenings we jump in the car and spend 3-4 hours at Lagoon. It is the highlight of the week for both of us! If you are sick of hearing about Lagoon you may want to stop reading now. But I need to give you a fair warning: If you see Jada and want to talk to her? She will almost assuredly want to talk about "Monster Rides".

Up until now Jada has only been on a ride by herself once. That was a car ride and she was in tears by the time it came back around. I have been begging Teya and Loni to get lil Troy, and Kit out with us so Jada would have a co-pilot and could ride the airplanes, the whales, spaceships, helicopters etc. This last Saturday Jada saw a ride that had elephants, dragons, and ladybugs flying in a circle. She turned my head and said "Ride?" I told her she would have to ride it all by her self because daddy was too big to ride on it with her. She replied "By Self?" then ran into the line (without me) :( So, over the next several hours I turned into one of those parents that I used to feel sorry for,leaning against the gate making faces and cheering on my kid as though I was at a Football game. The purpose of my cheering? My kid figured out how to pull a stick towards her, causing her "plane" to soar into the air...

Heres a little tidbit of information for anyone who might read this. Lagoon season pass costs like $79. IHC employees are $39 according to Teya. We have already gone 8 times! If you live even remotely close to Lagoon it is an extremely motivating tool when devising rewards and penalties for behavior. For instance most tantrums can be avoided with Jada Rose by simply saying the words "Good Girls get to go ride on Monster Rides"...Well worth the money in my opinion. Now there are some pressing issues for people who are germ-a-phobes like us. As many may remember the Lagoon crowd is not as hygienically educated as many of us would like. Here is a list of precautions we take. I know that most people don't have to deal with avoiding germs like we do, but hey blogs are for narcissistic expression, so humor me as if I was giving advice that might actually be useful to "normal people".

1.We NEVER NEVER NEVER go near Lagoon a Beach. YUCK! Can you say Crypto-sporidium cesspool?

2.The other obstacle is avoiding face to face germs. I find the best way to avoid this is putting your little one on your shoulders. This keeps them out of the faces of other people coughing and hacking. As well as providing an extremely effective upper back and shoulder workout! Just be sure to duck several inches lower for some of those low hanging trees! Especially if your name is Dan Briggs or Craigy Chilton!

3. Take a package of sani-wipes and wipe down each ride. It only takes a split second, and when you think of the sticky hands that have been touching that handle/bar all day...ewwww.

4. Sunscreen Sunscreen Sunscreen!

5. If you are just taking one child, and don't want to worry about a stroller. Park at the northern end of the main parking lot next to the trees. That way you don't need to haul a diaper bag around all day and when "the moment" comes that you need it? You know exactly where you parked. I found that by the time I grabbed the diaper bag out of the locker, cleaned the bathroom space, and changed the diaper, I could have just walked to the car and taken care of it in half the time.

Tuesday, June 3, 2008