Various Artists...

Them bones, them bones...

See these Dash? These are your bones!

Take a picture of them mom so I can see them!

Here kitty kitty...

I see him, but he scares me, daddy, help me introduce myself to that kitty over there! What the heck is that thing? His eyes are like fire glaring at me! I think I will stay with mom on the couch!

Much better! Protect me mom, that thing over there scares me!

This weeks results are in... drum roll please...

470,000!!! and 12.3!!!

Please Lord promise this is the new norm!

All in the family

Families are steeped in tradition and values. Families create paths of memories, good and bad. Sometimes there are bridges built to cross troubled waters, and sometimes there are forks that lead families in different directions. Sometimes we love the people we call family, and sometimes we would rather leave them. But the one thing that no one can deny in a family... genetics.

Gene's make your hair blonde or brunette, and sometimes black or red. They make your eyes blue, brown, green or something in between. Gene's make you tall, or short, slim or not so much. Genes make your skin pale or dark - black, white, yellow, red - and genes even determine its tone and texture.

Gene's can also determine what kind of life you will lead. A healthy and strong effervescent life, a long and prosperous life. Or one that is filled with wonder, worry, illness and a whole lot of "what if"s". For most of my life, I believed that my family genetics held promise for long life of health and little concern.

My grandmother comes from a very large family of 18 siblings. Although illness plagued some when they aged, most lived fairly long and healthy lives. My grandfather was from a smaller stock of family. It was he and his only sister Mary. Both Mary and my grandfather passed very young. So young that they were denied the opportunity to meet the many generations that followed. But there was little thought that their illnesses were of concern for the rest of the family.

Nine years ago, that perspective began to change. Nine years ago, in just a few weeks, my mother was diagnosed with Stage 4 Carcinoma of the Breast. It didn't start off looking quite that serious. Mom found a lump in her right breast just before Christmas. She waited a few weeks to have any tests done as she didn't want to ruin the holiday for herself nor the family. When she went in for a needle biopsy, the tests showed it was benign, and rather small. But mom chose to have a lumpectomy nonetheless. The rest became a fog. Shortly after mom was taken in, her surgeon came out to speak to all of us. It was cancer. It was very aggressive, and it was not at all what they expected. They closed mom up and prepared us for a more in depth procedure the following week. After months of chemotherapy, and several rounds of radiation, very little hair loss and a whole lot of prayers, mom got better.

She spent all of 2000 healthy. She travelled, worked as hard as always, spent a lot more time with her family, and gave her son away to his new bride. She also spent a lot of extra time playing grandma to her "tinker bell" Samantha. Mantha was the light of her life. Mom was an amazing grandmother. I sometimes think they got so close because mom knew her time with Mantha was limited.

2001 started out promising for mom. She got a clean bill of health on Valentine's Day, and her children were finally settled with their life partners - Ted married to Theresa for almost a year, and me, building a new home with Jim and Samantha. Mom even celebrated the spring holidays - my 30th with a huge surprise party, and Easter - without doing all the work, allowing me to start some traditions on my own. Mothers Day the family came from all over to gather for the Susan G. Komen Race for the Cure. The second one we walked in her honor.

But there was a shadow looming for the family. Mom's sister Mitz was diagnosed with Breast Cancer nearly two years to the date of mom's diagnosis - January of 2001. It was scary for Mitz, and mom was disheartened that her sister was ill with the same horrible disease. But everyone stayed positive, and helped Mitz heal. And during that same Mothers Day walk, we honored her too. And the shadow drew nearer. Mom was struggling that day to walk. She was in pain, although all the photo's I have of the event, you never would have known it. She spent part of the walk riding on the lap pf her nephew R.J. in his wheel chair. But she never really let on how bad it was.

Over the next few weeks it was visible to all of us that something was terribly wrong. Mom was growing weaker, and her spirit was not as alive. By Memorial Day mom had gotten very sick. For almost the whole month she had been told she had a pinched Sciatica - but we didn't believe it. She has lost well over 25#, was completely emaciated, and looked to have aged 25 years. Then she took a tumble down a flight of stairs. Wednesday May 30, 2001, Bruce and I took her to the emergency room. We spent the next 3 days fighting to get answers. Begging for tests and denying results until there was no other option.

Friday June 1st we were heartbroken with the news the Cancer was back. Monday June 4th, we were told to cherish what we had left, as mom was terminal and she had less then a year. Metastatic Carcinomal Menengitis of the Breast and Brain. Four months later, on October 3, 2001, mom left us. But when she left, her legacy remained.

Mom was tested for the BRCA1 and BRCA2 Cancer Gene's earlier in the year. Mom desired knowledge. Mom desired answers. Mom desired prevention for her family members. Mom tested positive. BRCA2 was the gene that was linked to the Cancer that she succombed to. BRCA2 carries high risk for both Breast and Ovarian Cancers in women, and Breast and Prostate Cancers in men.

In January of 2002 I was tested, and too was positive for the gene. Since then, another of mom's sisters Cathy was diagnosed with Breast Cancer. Again in January. Two years from the date of their sister Mitz, four years from the date of mom's first diagnosis.

Just this past month, mom's cousin Mary Margaret was tested, and she too tested positive for BRCA2. Mary Margaret was the only natural child of my grandfather's sister Mary. Mary passed from Ovarian Cancer many years before.

The link has now connected to both sides of the family.

Its all in the Gene's. All in the family.

So what does this mean for all of us? Some of us have had Cancer's. Myself included. Some of us are considering profolactic surgeries to prevent other Cancer's. Myself included. All of us are cherishing life a little more, and all of us are taking nothing for granted.

As we look forward to 2008, our family will continue to question what is right and wrong in our genetic makeup, and we will gather around those who struggle with the disease. We will also celebrate the health of each other, and support the decisions some of us will chose to make to live longer, stronger, healthier lives. And even though 2008 has not yet begun, we will look forward to 2009!

"Do you know how old I will be next year?"

That was the question of the evening. Jadon asked Jim "do you know how old I will be next year?" He then answered his own question with "I am going to be six!". Then followed it with, "I will be six just like Nolan, only then he will be seven".

And then it got real interesting... not! Jadon then turned his attention to me, and started the count down, or up in this case... From 6 and 7 all the way to 30. LITERALLY: "...and when I am seven, Nolan will be eight! And when I am eight, Nolan will be nine!"

I have never been so happy that he is only counting to "30" right now. He actually can count to "100", but as he tells me all the time, "mom, I am only in preschool, I don't have to count to 100 until I am in Kindergarten, and that isn't until September".

The kid's right... OY!

I have noticed that he has gotten really detailed and really technical about everything. There isn't anything really that we can get by him anymore including spelling. We are trying to spell backwards, but if I lose my husband while spelling forward, imagine the confusion when I spell backward.

hehehehehehehehe

Oh the things they come up with.

Switching gears...
Note to self... Don't assume anything. Puppy won't let his true personality show for a FEW days. We are on day 3, and the real "Dash" is emerging! I think the name was perfect. The first two days, he stayed right with us when we were outside, but tonite, that little turkey took off across the front yard - dashing through the snow - 8" of it - and there was no stopping him. He heard birds and wanted to see where they were. Yes Shan, "short legs" can actually run!!!

Blazin Brody's Daschel

Is his official name. He was just registered with AKC so there is no changing it now! We of course call him "Daschel" or "Dash", but we added his sires name for the official papers.

Dash is so friggin cute! He has the most amazing personality - he is polite, and silly, and snuggly, and playful, but not too much of any of them. He is the perfect blend. When we kennel him he will whimper for no more than 3-4 minutes and then settles in to the knowledge that it is his place for the moment.

He sleeps through the night, sometimes waking when Jim does, with a little "woof whisper" to let Jim know he is aware of his presence, and then back to sleep. We debated having me run home a few times a day for the first month or two, but after two days, he has gone from 9am - 3pm with no issues. Mantha is home around that time from school, so I am thinking we have a good schedule already.

Last night we went for a mile walk, and he made sure we all stayed together. He walked nicely on his leash - never on one prior to Wednesday - ever so often running behind us to make sure the "herd" stayed together.

Dash loves the snow - but only that in the front yard. I think the deck in the back is too intimidating for him, so whilst Jim really wanted him to be a "back yard" dog, for now he has the full view of the neighborhood from the front.

The cats, they are another story. I think the trauma of Buddy leaving for Brenda's, and a new pup within a few days, the little darlings are complete wrecks. Ruvy took to the underside of our bed Wednesday only coming out when I was in the room. She wouldn't leave that level at all. From what I can tell her only food was the tissues in the box next to my bed - she apparently found them acceptable for the time being.

Toby stayed in the basement. So they didnt have each other to commiserate with. Last night as I carried Ruvy to the basement, (along with their food and water to be sure they were eating properly), she promptly with her hind claws tore 4 rather large holes in the shirt I was wearing. Suffice it to say I do not think she is happy with me! This morning I carried Toby up to bed with me while Jim had Dash outside. Now I think he will be under the bed the rest of the day!

It will get better. They will come around. They have to. The rafters can only be solice for so long! :)

Christmas Wishes

From our family to yours!!!

273

Jadon's platelets were 273,000 this week! Bravo little man! He got "poked" in his middle finger so he now proudly waves it at everyone who asks how he is feeling!

His hemoglobin is 11.1 which is still low, but no one seems to know why. We have all lost our perspective of time this past month. His doctor here said it made sense since he had such a hard week last week, only she forgot that we have been home over 2 weeks now, and the difficult week was 3 weeks ago.

We still have to have his platelets checked every week until January 16th when we see the Hematologist. He will then determine if we can go every two weeks, or if we have to stick with the weekly regimin. Our goal is to have his numbers stay the same for 3 months. If they start to drop then the concern is that the steroids made them come up, but that they are done doing their job, or wearing off, and a new plan needs to come into play.

We didnt do blood work last week because my son's magic blue eyes did their job on Dr. A, and she let him off the hook! Fingers crossed Santa is giving us the best Christmas present by keeping our little boy healthy!



Thank you Santa! Merry Christmas to all!

Still no name...

Dayna just posted she got a kitten, and needs a name for it. And I realized that we still dont have name for the puppy Jim and the kids gave me! We pick him up on Wednesday, and it would sure be nice to have a name for him...

UGH!

Look what Jim and the kids got me!

I am excited, and nervous, and happy! Its like bringing home a new baby!

We dont have a name for him yet. We spent all weekend trying to come up with something, but we can't all four agree on one name. Jadon agree's with everything (even McDonalds, and M&M which were our test names). His color is called "Blaze", so we are considering "Blazer" if nothing else comes up!

He is a Pembroke Welsh Corgi. He was born on October 5th.

He is the Breeder's favorite. We had talked about another one (a female), but when I saw this little guy I knew he was the one! She said he is very mild mannered and "the nicest one of the litter".

We could have picked him up this week, but I didn't think introducing him to a new house with 3 cats (Buddy moves to Brenda's on Sunday) and two kids on the busiest week of the year would be fair, so we are picking him up on Wednesday of next week!

I finally did it!

Well, its still under construction, but I finally have my jewelry website started. I don't have all the details worked out, but I am getting there! Because everything I make is one of a kind or custom, I am not selling with direct payments. Its too complicated for the "dabbling" I am doing. If I decide to make and sell hard core then I have another site I will sell through that is my favorite place to buy from!!!

Check out my new website: www.itsmystore.com/pomad Friends and family get great discounts!!!

Have a Happy Holiday!!!

... and wait til you see what I got for Christmas!!!

Thank you for understanding doctors!

We went to Jadon's appointment this afternoon, and after many discussions about the need to have blood drawn, I explained to Dr. Amechi that if we could wait a week we would be indebted to her. She agreed! There was no discussion at all about why that wouldn't be wise. She agreed that even a lower then normal count would not facilitate change in Jadon's care, and that he has been through enough already, so one week wouldn't matter.

You should have seen the smile on his face, and heard the under his breath "woohoo" as we walked out the door in the opposite direction of the lab!

Thank you Dr. Amechi!!!

What would you do...

Jadon is absolutely adamant that he WILL NOT be poked again. But I know differently, he has labs today at 2:30. When I tried to prepare him for this afternoon, he not only looked at me with his big blue pouty eyes and said no, but he also reminded me that we promised no more pokes.

S!F!D! How do you tell him you lied? How do you explain to a 5 year old that he needs to have this done, and that it isnt just today, but every week for the next year?????? Because I fear he will pack his Thomas suitcase and split town at any moment now!

I have tried the following:

• Me: "If we don't do this, they will make us go back to the hospital" - J: "I dont care!"
• Me: "We have to make sure you are getting better" - J: "I am better"
• Me: "I will take you to McDonalds" - J: "I dont want McDonalds"
• Me: "You can pick out a new Thomas Train" -J: "Ok" ... and then with a little more thought "I dont want another Thomas Train"
• Me: "What do you want to pick out?" -J: "I don't want anything, I just don't want to go to the Doctor"

NOW WHAT??? I have used the two good old stand by's/never fails...

Did I tell you what he has been telling people? Apparently his "magic naps" were not so magic. He remembers getting poked in the butt (really his hip, but this is how he tells it). He has told several people that when he took his first "magic nap" he felt them poke him in the butt twice (which they did!). Then he told my aunt and a few others that when he took his second "magic nap" he watched them take the string out of his mouth. BOTH times, he was completely asleep - I know this because I was there before and after! They did not tube him because of the risk of bleeding, but he was as under as one can be without being tubed. I have heard of the phenomenon of people not "completely under", but my 5 YEAR OLD??? Holy crap! I know we talked a little about the procedures in front of him, but he was usually distracted, and never once did we talk about the Bone Marrow Biopsy process in front of him, including when, where and how often. So he has to be remembering it.

So now I am back to... what do I do now? I have to make him go. But I know I am going to be hauling a kicking and screaming child into the place that is no longer safe to him. And it is the same place where he had his sore removed, so I am sure that will factor into it.

UGH!!! I will take any advice!

Our Room

Its time for happy "joyful" stuff again, so here is a little to get us started...


This is the "view" in the Childrens Hospital. Even the hallways are meant to be comforting!





This is the room that we won in the "lottery"! There are only two of these rooms, and let me tell you, for as much as I am sure there were others that deserved it more then us, I am so happy we were able to stay here!




Thank you to all the donors that make these rooms possible! The really cool thing about Childrens at the U of M is that they are building a brand new hospital separate from the main hospital to make it more convenient for families and children to stay. All of the rooms at the new hospital will be similar to this. They wont be as high tech, but they will have similar qualities to this room with conveniences such as in room fridges, microwaves, computers, and family bathrooms.

Childrens at the U of M is truly a special place to be when you need to be there!

Pictures of Jadon's ordeal...

Our ordeal is over, but I thought I would retrace our steps for all of you.

This is the "sore" that started the down hill roll of the past 9 days... Jadon woke up with this "sore" in his mouth on Tuesday - I had to clean blood up before I could get a good enough view of what was in there.

I thought this looked bad! This was immediately following the procedure to remove the sore that we now know was a Muciloid Cyst.

As you can see, by now, Jadon was bleeding pretty heavily. This was taken at 2am on Wednesday, nearly 18 hours after the cyst was removed.

Six hours later... This was taken at Childrens at about 8am on Wednesday. He now has a very large hematoma in his cheek. It is bleeding, and so far no one can find the source. At this time it looked as though there was a golf ball in his cheek.

This was taken at 2:30 pm, after an attempt to "pack" the hematoma. Unfortunately Jadon could not bite down, and that was key to leaving gauze in his mouth. If he couldnt bite down, he could choke on the gauze. By now it looked as though a small tennis ball was in his cheek. Jadon was given Platelets immediately after this failed procedure, but he did not latch on to them, so overnight he also had a round of IVIG (Intra Veinous Immuno Globulins).

Thursday after a few attempts at "mouth cares" aka, peroxide and saline washes. They were painful to watch, but as you will see, very beneficial to getting the hematoma out.

Friday...

Saturday...

Sunday...

Monday... Bone Marrow Biopsy Day!

Tuesday... Our first BIG Smiles!!!

Wednesday... We just found out Jadon's platelets were at 184,000!!!! Sutures came out today, with no bleeding, we are FOR SURE going home tomorrow!!!

And today, as we came home, we were so grateful to have had all of your prayers, and kind thoughts and well wishes for Jadon!

Happy trails to us...

...I hope we don't meet again!


Jadons count is get this... 184,000!!! We all had our jaws drop to the floor - HE IS BACK TO NORMAL!!! At this rate we sort of expect him to be near 300,000 by tomorrow since he has doubled and tripled the last two days - it may be wishful thinking, but at this point, any number higher then today is perfect because, well, his counts are back in normal range!

Whether or not they ever see this, we have to thank all of our wonderful Doctors and Nurses, Aides and Child Family Life Specialists for making Jadon's healing as comfortable as possible!

Hemonc Doctors (Hematology/Oncology)
Dr Michael Burke
Dr Susan Kearny
Dr Marcie Elwein

Pediatric Doctors
Dr Charlie DeRubeis
Dr Tate Gisslen
Dr Rhys Strasia

Oral Surgeons
Dr Blaine Milne
Dr Farnsworth

Plastic Surgeon
Dr Marquez

All of our Nurses
Erica
Sara "our little brown haired Sara"
Sarah
Jana
Karen
Sari and Shannon from 5A

All of our Aides
Gary
Mike
Regina

Child Family Life Specialists
Andrea
Emily - you made our procedures so easy
Sarah from 5A

And our Emergency Staff
Dr Betrus
Annette

Thank you all so much for helping us heal as fast and as painless as possible! You are all amazing, and although we really enjoyed meeting you all, we hope to never see you again! :) (Except Dr Burke who will follow us for the next 6-12 months in Mankato that is!)

And once again, thank you for all the wonderful donors that made the Adopt-A-Room possible for us!!! http://www.adoptaroom.org/seeourwork2.html (Dayna found this for me yesterday, but since she is now sick, I will post it!) If you look at photo #1, our room is the one on the left. We did not have the nice pull out sofa, but we had a roll-a-way that worked just as nicely!!!

And most of all, thank all of you for supporting, praying and thinking healing thoughts for Jadon! Dayna was right, you all prayed hard - and it worked!!!

Thank you thank you thank you!!!

Day 7 - this is getting old!

So my friend Dayna and I have been posting updates on Jadon the past few days - today, there is nothing really to report. The only thing that will be of interest is his labs which wont be drawn until two.

So... back to the basics... Life is not ours yet... we are still here, and Mantha is still with friends, and our life is not ours to live. We are on someone elses schedule all the time, our meals for the most part are dictated by the "chefs that be" (which I will say, they are quite talented - food is good here!), and our sleep is never uninterrupted. To sum it up, we are getting sick of this place! It has been a long haul, and we are not by any means ready to be released. We are at least 3 (counting today of course) days out, more if we cant get a good suture removal tomorrow.

We have played the playrooms to death. We know all the docs and nurses by first name, and serial number. We have their schedules memorized, and their habits etched in our brains. And they ours. And we are so tired. Jadon has been really good at "passing out" and staying there unless we have an accident at night (which who can blame the poor kid - he is getting two bags of fluids a day plus juice and milk by mouth). Even our fun room is getting boring. Although we have 5 tv's total (a HUGE plasma, and two small ones, as well as two others that control the room and are tv's), there is only so much you can watch is one week and not get tired of all of it!!!

But, there has been some good stuff too! Did I ever mention that he is eating finally? We got the ok after the BMB yesterday! He woke up from anestesia with McDonalds in his bed - barely awake he started horking fries like he hadnt eaten in months!

Here is our "plan" for the week:
Today, round two of steroids, labs
Wednesday, round 3 of steroids, labs, and hopefully remove sutures
Thursday, if we get sutures out on Wed, we can go home
Friday, if we didnt get sutures out on Wed, Fri is our next suture option
Saturday, worse case scenario "go home day"

So that is that! Dayna found our room online, so I think she is going to post that in a little while. Again, thanks for all the thoughts and prayers!!!

Oh, and Mantha, although sad that we are all apart, is having A B.L.A.S.T. with Melissa, Josh, Bailey (her bff) and Shelby! We miss her to death, but know that she is with a great family while we are gone!

Results & Good News!

You all must have been doing some serious praying out there!!

Jadon's platelet count has jumped from 5,000 to 12,000 at 1:30 when he was in getting the bone marrow biopsy done, and jumped again an hour later to 17,000 when his labs were checked following the biopsy. This is AMAZING news. This means, it is likely not a production issue. Not only that - but it means it appears that this is ITP - and NOT something else way scarier.

For right now - the docs want his platelets at 50,000 before they are willing to take his stiches in his mouth out - and he is scheduled to have them out Wednesday afternoon - he must stay for 24 hours following removal which puts them home Thursday. If his platelets are not at 50,000 the next available time to remove the stiches will be Friday, so they would need to be watched until Saturday and then they can head home.

The doctors told Lori that ITP usually resolves within 6 - 8 months, and usually is not worse after the initial problem.

Let's keep praying that this is a one time issue and for Jim & Lori who have been very worried about their little boy (something I SO get).

Bone Marrow Biopsy is Done.

This is Dayna again.

I talked to Lori's Dad briefly Jadon is through the Bone Marrow Biopsy and is doing well. Results may not be be in until tomorrow according to her Dad.

Will update when I know more.

Bone Marrow Biopsy

This is Dayna, Lori's friend.

As of right now, there has been no change, no labs have been done, but will be done while he is under - speaking of which -
Jadon's BMB has been pushed back 1pm - and results are expected within 3 - 4 hours.

I will be updating as soon as I know anything.

If you come here - please leave Lori, Jim or Jadon a message, or comment below. They are, understandably, very worried.

Bone Marrow Biopsy

So tomorrow (Monday) at noon, Jadon will be having a Bone Marrow Biopsy.

His numbers are not changing, IVIG appears not to have worked, nor has the Platelet transfusion, so the next option is steriods (and possibly another round of IVIG or Platelets or both - it is too soon to tell). Pending any new diagnosis, there will be 3 days of IV Steroids, followed by suture removal and hopefully discharge.

Right now we are looking at Thursday to be the earliest we will leave, but they are not promising us anything right now. They need to focus on the biopsy, the results and the next plan of attack.

It has been a long haul, and we are only half way through it. We need EXTRA prayers for tomorrow. We need to hear that this is for sure ITP - and not something more complex (ITP is complex enough for me!). Please say a few extra's if you have time!!!

As always, I have my cell, but I may not answer depending on where Jadon is, or if we are busy with him. This will always be the best place to check. I am trying to get online or on my email once a day, but if I dont call right back, or respond right away, know that I have received your messages and appreciate your thoughts and prayers!

Thank you for all the love and support you have given us!!!

A wonderful surprise!

Its not the kind of surprise we have been waiting to hear, but it is definitely taking the edge off of our stay here!

There are two "Adopt-a-Room" suites in on the 5th Floor. The rooms are assigned "lottery" style which means that as the current resident is discharged, the names of the other kids in the unit are put in a pot and a name is drawn.

Jim, Jadon and I were here in the resource center last night after dinner. Jim went to "check the weather", as he walked into our room to drop his jacket off there was a note on our white board to ask the night nurse about our big surprise! She happened to see him walk in on her way out of the unit at the end of her shift, so she told him. They came in here and he said, "You have got to see this". I am thinking, they got new labs back and we are in the clear (only I forgot there had been no more labs drawn...). So Sarah took me to the surprise, and I BAWLED!

The room is A.M.A.Z.I.N.G.!!! I took a ton of pictures, and as soon as one of us figures out how to get Day the ability to post them for me they will be here!

Some of the features:

• Privacy!!!
• State of the art equipment (even better then the regular rooms!) - including an awesome bed that has lots of buttons to keep Jadon busy!
• A dining area complete with fridge and freezer
• Computers (of course they arent working, but that has been my luck this week!)
• A computer for Jadon too!
• A HUGE bathroom with a shower that "rains" from the ceiling
• Villeroy and Boch sinks (designers/decorators you will understand this is cool!)
• A 60" plasma tv
• Two 30" plasmas
• AND two 20" plasma control panel/tv's (one is also a computer) for me to control the following: lights (and I am talking LCD color changing, mood altering, cool effects and color lights!), all the tv's, playstation 2 and Xbox, the blinds on the windows, the sound in the room, the heat in the room, the movies, music, etc... the list goes on and on
• A roll out for me (thank God no more stiff blue thing that isnt a chair or a bed - YOUCH!)
• Lounge chairs (not folding or hospital chairs)
• A "privacy screen" so even if the door is open, no one can see the beds!

I know there is more - oh, a TON of storage!!! - but even the pictures cant do it justice!

If you must be stuck in a place like this, it is great to be lucky at the lottery!!!

To the hospital we go...

Twists and turns and bends in the road seem to be the path of our lives these days. We waited over two weeks for the funeral, and just as that moment arrived, another fork in the road hit our family.

This is a copy of an email I sent out that best chronicals this weeks events. My friend Dayna is going to keep this blog up to date for me, but I thought I would get this part on - she will post pictures and updates! :) - thank you Day!

Tuesday/Wednesday:

• Tuesday morning Jadon woke up with a large sore in his mouth that looked to be a blood blister I took him in to STJMC to have it looked at.
• The doctor was not sure what it was, so he decided to err on the safe side and remove it and send it to pathology. He was having trouble with the bleeding, so he added a few extra stitches.
• He sent us home with no after care (other then to return on Monday to have stitches removed), but said the swelling would be down in a few hours
• We left for the cities for the funeral (understanding that he would be ok)
• My aunt rode in the back seat with him, and was wiping saliva filled blood the whole trip
• The swelling got worse, but we atoned it to the novicane wearing off
• By the end of the visitation he was border line lethargic but also very sleepy, his lip was 100 times its normal size (imagine a golf ball in his lip), and he was still bleeding
• We took him to the hotel and cleaned it up thinking it looked better we sent him to bed with Motrin
• At midnight he was covered in blood
• We took him to the ER at Fairview Ridges
• His platelets were "under 10,000" (normal is 150,000 - 400,000)
• Jadon and I were sent via Ambulance to Childrens Hospital
• His platelets when we got here were 2,000
• Since then he has had a platelet transfusion, IVIG, and a TON of morphine, Amicar (a platelet glue - basically makes the few he has more sticky), and antibiotics
• His platelets after the transfusion were up to 6,000 where they still are now.
• Grandpa has been great (as has Grandma Char) - he has taken good care of all of us!
  

Thursday:

• His platelets have stayed at 6,000 which is not good, but also not bad, because his body is not rejecting the new, and not eating up what was given him. He "should have" gained at least 10 times what he did with the transfusion.
• They believe that he has ITP (Idiopathic Thrombocytopenia). But they are not certain.
• The Amicar is helping the wound in his mouth clot, but he has developed a hematoma in his cheek, so he has a lot of swelling, and alot of blood built up inside the mouth.
• They cant do surgery on the hematoma until his platelets go up
• They arent sure they should do it even if they do go up
• We started Mouth Cares today. They are not easy, and Jadon is not very cooperative, but we will keep working on them
• We will be here at least through the weekend, but we are not sure what steps are still to come.
• They are not committing to anything - they are taking everything moment to moment.
• The good thing is, he finally let us get him out of bed this afternoon and have played in some of the play areas.
• He even played Thomas on line!
• UPDATE ON MOUTH CARES: Our awesome nurse Erica got a HUGE clot off the side of Jadon's mouth - he looks so much better now!

Friday:

• Jadon's labs are back from this morning, and his platelets are down a little from yesterday - they are now at 5,000
• The doctors are not too concerned because anything between where he has been and 10,000 is all considered emergent, and would be treated as he is now.
• The only "new information" is that if his platelets dont come up by Saturday, he will be scheduled for a Bone Marrow Biopsy.
• This is done to rule out a few major illnesses, and confirm that it truly is ITP we are dealing with.
• The only thing that will change this would be if his counts went way up tomorrow and stayed up on Sunday and Monday.
• Jadon has been more active today. He played quite a bit, even made sand art with the Child Life Specialist
• He rode a tricycle around the unit a few times and has been running daddy ragged chasing after him with his IV Pole.
• We have finally started liking eating a little more - of course all food is through a syringe - but since our favorite yogurt is TRIX, and they have it here, we are good to go!
• Great Aunt Chris came to visit tonite. She stayed and watched Polar Express with me so Jim and I could go to dinner.
• Aunt Denise and Uncle Steve came too, so they went and ate with us.
• It was nice to leave for a while, but even better to get back!

Saturday: "let it snow, let it snow, let it snow"... we are getting upwards of 10" today... OY!

• Nothing has changed.
• Platelets are still at 5,000
• Hemaglobin is the same
• So at this point we are scheduled for the Bone Marrow Biopsy at noon on Monday.
• We got to go downstairs and watch some performing dogs this morning - Jadon didnt like it much, but it was an awesome distraction for us!
• Jim took the semi home yesterday and brought my jeep back, so unfortunately we are committed to him working Monday.
• My Dad is taking Jim and Mantha home tomorrow so my Jeep can be at his work ready for him when he gets off work.
• Mantha will stay with our dear friends Josh and Melissa - and of course, Mantha's best friend Bailey and her sister Shelby!
• Dad will come back up as soon as Mantha is off to school on Monday so he can be here with me while Jadon is in surgery.
• Jadons cousin Lainey came to visit this afternoon! They played "Trouble", and he pulled her around the unit on a cart attached to his tricycle. Try hauling a pole around following a trike!
• Uncle Teddy and Auntie Theresa were here too (with Lainey)

I do have my cell with me here at the hospital - if I dont answer, or call right back it is because he is awake and we are trying really hard not to talk to much about it in front of him. This will be the best place to get the latest updates - thank you Day!

We appreciate any and all prayers!!! We want to get this little boy home healthy and ready to celebrate a childs favorite time of year!

Thank you for your support!!!

Update on J.

Hello everyone. My name is Dayna and I am a friend of Lori's. I offered to update her blog so everyone wuld know what was going on with J. her 5 year old son. Please feel free to come back here for continued updates, as Lori will be calling me so I can update her, so she will not need to call everyone to let them know his status.



As most of you know by now, Lori & family were to head up to the Cities on Wednesday morning for her Step-father, Bruce's funeral. Tuesday morning, J woke up with some blood in his mouth - I am going to paste an email from Lori about the sequence of events:


"Tuesday morning Jadon woke up with a large sore in his mouth that looked to be a blood blister I took him in to STJMC to have it looked at. The doctor was not sure what it was, so he decided to err on the safe side and remove it and send it to pathology."

"He was having trouble with the bleeding, so he added a few extra stitches. Sent J. home with no after care, but said the swelling would be down in a few hours. We left for the cities (understanding that he would be ok) My aunt rode in the back seat with him, and was wiping saliva filled blood the whole trip.


The swelling got worse, but we thought it to the novicane wearing off .


By the end of the visitation (for Bruce) he was border line lethargic but also very sleepy, his lip was 100 times its normal size (imagine a golf ball in his lip), and he was still bleeding. We took him to the hotel and cleaned it up thinking it looked better we sent him to bed with Motrin


At midnight he was covered in blood. We took him to the ER at Fairview Ridges
His platelets were "under 10,000" (normal is 150,000 - 400,000). (Side note from Dayna: platelets are a component of your blood - their job is to help blood clot, anything 10,000 or under is considered emergent)


Jadon and I were sent via Ambulance to U of M Childrens Unit on the East Bank of the Campus His platelets when we got here were 2,000
Since then he has had a platelet transfusion, IVIG, and a TON of morphine, Amicar (a platelet glue - basically makes the few he has more sticky), and antibiotics
His platelets after the transfusion were up to 6,000.



Thursday:


His platelets have stayed at 6,000 which is not good, but also not bad, because his body is not rejecting the new, and not eating up what was given him. He "should have" gained at least 10 times what he did with the transfusion. They believe that he has ITP (Idiopathic Thrombocytopenia). But they are not certain. They cant do surgery on the hematoma until his platelets go up, they arent sure they should do it even if they do go up They are not committing to anything - they are taking everything moment to moment.


The Amicar is helping the wound in his mouth clot, but he has developed a hematoma in his cheek, so he has a lot of swelling, and alot of blood built up inside the mouth.


We will be here at least through the weekend, but we are not sure what steps are still to come.

The good thing is, he finally let us get him out of bed this afternoon and have played in some of the play areas. He even played Thomas on line!



(this is Dayna again)

Friday: J's platelet count is down to 5000 - which in the medical world is considered no change. However, they were hoping it would go up. At this point they are trying to figure out a next step, this appears to be a Bone Marrow Biopsy to check to see the J is Producing platelets. Both Lori and Jim say J looks better then he has.