Max's Birthday Announcement

Someone has a birthday party coming up...

Now that everything with Hank is stable and life is returning to normal, we are celebrating Max's Birthday on Wednesday September 29th.  Feel free to call him and wish him a happy birthday on that day.  I've been feeling very guilty for postponing his party so I want to make sure he gets the fabulous party he deserves.

His face in this picture reflects his mood these days...pure devil!

After being trapped in the hospital last week I really wanted to take the kids up American Fork Canyon for a picnic.  They really enjoyed feeding the ducks.

My two buddies reunited.

Max was so happy running around like a manic, dancing, and scaring the ducks.

 Hank was a bit more reflective.

Max was acting a fool when...

he slipped and face planted in the mud!

Being the evil mom I am, I quickly ran for the camera to capture the moment.  It was hard not to laugh.

Hank was far more sympathetic.

 Max had no problem eating his lunch in the nude.

The joys of being a boy in the mountains.

 It did us all some good to get outside.  It's going to take me awhile to recover from the stress and emotion

 of last week.  Hank is doing really well but I notice him getting tired quickly. I am so paranoid something is going to go wrong again.  He had a headache tonight and I contemplated calling his doctor.  I know I'm driving him nuts.  I need to relax.  I am exhausted and apparently the boys are too.  They were both in bed by 7:30 tonight.  That's a first!

 

Hank Update #11 We're HOME!!!

After nearly 9 days at Primary Children's we are home!  Hank's platelets shot up to 145 today and his other numbers came down enough for the doctors to discharge him. 

From this...

To This!
His doctor said that he doesn't have any dietary restrictions and can go back to school on Monday.  His hematocrit is still pretty low and that will take a few months to get back to normal.  As a result he will get tired pretty quickly.  Other than a follow up visit with his pediatrician next week and daily blood pressure medication he is good to go until he meets with the primary children's doctors in 3 months.  They want to check on him once a year for the next 5 years.  She doesn't think he will have any lasting effects but the high blood pressure could continue for awhile.

We were greeted by Grandma Jeri and Kate when we got home and Sarah made this gigantic welcome home sign with balloons.

The kids in our neighborhood made this sign for Hank.  He also received a soccer ball from his team, which they all signed.  He was feeling pretty darn special coming home, as he should.  I just can't even believe everything we've been through this week.  I am so grateful, happy, and relieved that everything turned out how it did.  We definitely dodged some bullets and we are so fortunate to have Hank home and healthy.  Nothing will change your perspective like spending a week at a children's hospital.  I am forever changed.  Life is such a precious gift, not to be taken for granted.  There is nothing more important than health and family.  It is something I will cherish everyday for the rest of my life.  Again, I can't thank you all enough for the tremendous outpouring of love and concern.  It means the world to my little family.  I love you all so very much.  It's so good to be home!!!!

Hank Update #10

Last night Sarah and my dad came up to hang out with Hank while Randy and I went out to dinner.  How awesome is that?  Not to mention Scott and Jeri had Max all day and Jenni helped out this evening.  My family is amazing.  I have the most incredible family in the world, hands down, I just can't stress that enough.  Even those who are nowhere near Primary Childrens, offer their support in the form of phone calls, texts, e-mail, or care packages.  My family in Manti sent Hank a super soft Red Sox Blanket and he snuggled up to it all night.  My four moms in Laguna Beach sent me a gorgeous floral arrangement yesterday. I am amazed and overwhelmed everyday by your support.  I love you all so much.

Now for Hank's stats for the day.  His platelets are up to 95!  WooHoo!  His doctor is really happy about that.  His kidney function also improved.  They are talking more and more about him going home soon.  His potassium and phosphorus is still high so they have him on a really strict renal diet.  He isn't too happy about that but he knows that by sticking to it he can go home sooner.  If you are coming to visit, don't' bring any treats for him, or me for that matter.  I told him I would stay on the same diet he is on.  We are getting a new doctor tonight so it is up to her when he gets discharged.  That's all for now...more to come.

Hank Update #9

Hank got the all clear to leave the room yesterday afternoon, so he has been all over this hospital.  His spirits are high, thanks to the amazing visitors and constant entertainment from Randy and I.  He is quickly becoming famous on the third floor.  The nurses are in love!

The Doctor just came in this afternoon and told us his platelets jumped from 59-76 which is awesome progress.  He said he wished his other HUS patients had that much progress.  He looked at Hank and said, "Gee I'm glad I don't have to put you on dialysis.".  He is hopeful that if we continue to see progress he can get out of here later this weekend possibly.  I'm trying not to get my hopes up because I know how medical things go and I need to be emotionally prepared for this thing to take longer than expected.  His kidney function is holding steady but is still only about 50% of normal.  I know he's going to beat this thing.  The doctor said the damage done to his kidneys is minimal so that is great news.

I can't thank everyone enough for their love and concern.  It means more to me than I can ever say.  I feel your support and it is the only thing getting me through this.  Thank you to everyone who has helped me with Max.  Randy and I are taking turns going home and spending time with him.  He is anxious to have our entire family back together and so am I.  Love to you all!



 

Hank Update #8

Another day, more of the same. Hank is a real trooper. We are still waiting for the e. coli tests to come back. I am told that will happen really soon, perhaps even while I'm writing this! The doctor came in this afternoon and here are the things I know thus far.

His platelet count went up slightly from 54 to 59. Dr. Grinsell said that usually goes up before the hematocrit and all the sudden they will shoot up. They need to get to 150.

His hematocrit or red blood cell count went down slightly from 25.5 to 24.9 but has been pretty steady for a few days. That needs to start trending up for at least 3 days before they let him out of here.

They are closely watching his potassium and phosphorus levels as they are both a bit high. He has some dietary restrictions that continue to change on a daily basis. He was told today he could have chocolate and then 15 minutes later told he couldn't. They are just looking for any way to help the kidneys out.

His kidneys are functioning better. He is producing adequate amounts of urine now but his labs are still on the high end. The doctor is pleased with the progress and doesn't anticipate needing dialysis treatment. There are 2 other kids on this floor with HUS and they are both on dialysis so in comparison, he is doing really well.

Sarah and Jack just stopped by this morning and that always cheers us up.

Rusty, don't be mad, the sippy cup has resurfaced!

Kunz, Dyson and Colby are producing some entertaining you tube videos that Hank LOVES! I can't thank everyone enough for all the love and support. I realize how long of a drive it is but that hasn't stopped the visitors from coming. It looks like Christmas in his hospital room. Thank you also for all the help with Max. It looks like we are going to be here a bit longer than I hoped but I keep reminding myself things could be much worse.

Hank Update #7

Randy stayed at the hospital last night and I went home to sleep with Mino and spend the morning with him on his birthday. He isn't aware that today is his birthday. We are planning to celebrate when Hank gets home from the hospital. I will keep everyone posted on when his fake birthday will be so don't wish him a happy birthday just yet. We had a very fun morning of making breakfast, playing games, and cuddling on the couch. He really needed his mama for a bit. Don't we all sometimes?

Happy Birthday Max! I love you so much!

In Hank news, we are still waiting to hear back on his last e. coli test, which I expect will come back negative again, and then he will be able to leave this bloody room! Not leave the hospital, just walk the halls or go down to the cafeteria or walk outside. I doubt the results of that test will come back until tonight or tomorrow :( The doctor came in this morning but Hank was in the tub so he said he would come back later. He told Randy that everything looked the same as yesterday. No better, no worse. I am happy it's no worse but I was really hoping for some improvement today. I will update as soon as there are any changes. Hank is doing well other than going a bit stir crazy. I don't blame the poor kid. He is itching to get out of here.

Hank Update #6

Dr. Grisnell came in this morning and delivered more of the same news. We have to wait at least one more day for more tests on the e. coli situation. I'm pretty annoyed about that. I know they have their reasons but man, it would be great if he could step outside this room for a few minutes. The nurse got in trouble for letting him go outside last night.

Some other new info is that he needs to limit the phosphorus intake and he can do that by taking tums with his meals and avoiding foods really high in phosphorus like chocolate. His updated list of foods he can't eat are, potatoes, dark sodas, melons, bananas, gatorade and chocolate. Everything else is holding pretty steady but no real improvements yet. Good thing he has such great visitors coming up and keeping him entertained. I am grateful things are not getting worse at least. He has been chugging the water today which is most excellent. Such a good boy.

Kick Ball

Photo booth fun on the computer

Art Time

Cheetos in bed

Cousins Galore

Hank Update #5

After a long day in the room yesterday, Hank was itching to get out. We had a really cool nurse last night and she said she might be able to get him outside if we waited until after 9. As long as Hank didn't touch anything or go into the cafeteria he could go outside. He was so cute! He kept saying "I'm Free!". We got some pennies from the car and he wished with all his might that he could go home soon. Before each toss of the penny, he would close his eyes and think really hard, please let me go home. Poor little buddy. Randy went home late last night to sleep at home with Max. I know he wanted to stay here really bad but he was the more mature parent and let me stay.

I don't have a ton of information this morning because I've only spoken to the resident doctor and not the real doctor yet. She told me his e.coli tests have come back negative so far so she thinks he will be able to leave our room and at least walk outside today. I'm not telling him that yet until I'm sure. His platelets and hematocrit have dropped slightly and his kidney function is staying the same. It just takes time for the body to fight this. His red blood cells are still being killed off but at a much slower rate. His blood pressure is being watched pretty closely and they are using medication to get that under control. I'm expecting the renal doctor, Dr. Grinsell, to come in later this morning. He seems to give me better information than the medical students.

Hank is handling all of this like the stud he is. He never complains and his favorite response to all the questions the docs ask him is "good". More updates to come.

Hank Update #4

The doctor just came in and confirmed what the nurses said. His platelets have dropped from 80 to 60 so they want to make sure that doesn't continue to drop but they don't seem too overly concerned about that. I mentioned that Hank's face looks a little puffy and he said that is normal considering his kidneys are only functioning about 40%. He needs to keep drinking lots of fluid and is off all the IV's right now. The other issue is his e.coli test. He can't leave his room until they get the results from that test and it won't be in until tomorrow. He really wants to go down to the cafeteria but can't for now so good thing he has room service. He ordered nuggets for breakfast and is playing Simpsons Road Rage with Randy and loving life.

That's all for now. He loves having visitors, just make sure you aren't sick! I love having visitors too!

Hank Update #3

Last night was 100% more restful than the night before. Hank took a bath last night and watched a movie with Randy and I. He is acting more and more like my old Hank. They took a blood sample this morning and said his red blood cell count was perfect and that he has plenty of blood but that his platelet count was a little low. They expect that after a transfusion but will continue to monitor that throughout the day.

The renal doctor, whose name I can't remember for the life of me, will be in today at some point to discuss his kidney function and give us further information. Since it's Sunday, I don't expect him to be in here any time soon. His blood pressure is stabilizing now and they haven't needed to give him any more medication. My little baby is resting so peacefully right now. I am so grateful this morning.

Hank Update #2

We just met with Hank's new doctor, a renal specialist and he gave us a definite confirmation that Hank does indeed have HUS. He told us that based on his labs from last night, had he gone one more day without treatment he would have been on dialysis. He has come a long way since then and things are improving. He said HUS is a very serious disease but they have a very high recovery rate with few lasting side effects. He never wishes this disease on anyone but when the alternate diagnosis is Leukemia he would take it.

Hank had a second blood transfusion this afternoon with additional red blood cells infused and his coloring has become more normal. They just got his hematocrit levels back and he is back up to 29 which is great news and means he won't need more blood for now. They just took a stool sample and they are going to test it for e.coli but won't know if it has it for a few days. Most often people get HUS from eating food contaminated with e-coli however some get it for other reasons. They are monitoring his blood pressure very closely and it was quite high a few hours ago so they gave him some meds and it is regular now. They will continue to check that and make sure he stays hydrated. All his lab results keep coming back better than the last round they took. He is doing so well, he is so strong. The doctor was very reassuring and very sorry for the confusion yesterday with the diagnosis. I'm not sure why we were told the wrong thing but I don't even care at this point because my baby doesn't have cancer and he is going to beat this.

I'm not sure how many days we will be here. It's up to Hank and how quickly his body beats this. As for now he is enjoying room service and non-stop playstation with Randy. We have had lots of visits from friends and family which we all love, especially Hank. The outpouring of love and support continues to amaze me. Thank you all for your prayers. Love to you all.

Hank Update #1

The oncologist just came in and after reviewing all his tests she determined he DOES NOT have leukemia! Praise the lord, I am so relieved I don't even know how to react. He has what is called HUS or hemolytic uremic syndrome, caused by ecoli. It has destroyed some of his red blood cells but the doctor believes the damage has been done and he is on the road to recovery. She doesn't foresee any long term damage done to his kidneys since he has rebounded so quickly. He still needs more blood since his hematocrit is so low. They will be changing his medical team to the kidney specialists and possibly moving us off the cancer floor....yippee! Get me out of here.

They are continuing to monitor him really close and I realize we aren't out of the woods yet but things are looking up at the moment. He's really sleepy right now but I know he would love to see visitors. They expect him to be at the hospital for a week at the most. I will keep you all posted but please know your positive thoughts and prayers have most definitely worked! I am overwhelmed by the love and support, it is truly a powerful force and Randy and I love you all so very much. I will post more information as I get it.

Hank

I don't even know where to begin. My normal day of running errands and eating lunch at Bajio took a huge detour and we found ourselves at primary childrens hospital with Hank around 4 this afternoon.

I took Hank to our pediatricians office around 1130 yesterday because his coloring was still off from his bout with the flu. His energy hadn't resumed either so they did a simple urine screening and found blood and lots of protein in his urine. We headed to AF Hospital to have a blood test after that and I was told to call my doctor back in a few hours for the results.

I don't know why but I was dreading making that call. Nothing could have prepared me for what the doctor said. I keep replaying that moment in my head and I still can't believe it. "Mrs Griffin, Hank has leukemia." What? I was in complete shock and I don't remember anything he said other than take him up to primary childrens hospital now and they will admit him.
After a few hours in the Emergency Room and several tests, we moved upstairs to a room on the immuno compromised floor. We met with the oncologist who had recently looked at all his lab work and she was very calm and reassuring. Hopefully I get all the information right because it's a lot. This is more for my record than anything.

She isn't' sure that Hank has leukemia based on the blood work she saw. The slide she looked at showed lots of red blood cells being destroyed and in leukemia it is more white blood cell destruction. She mentioned it could be something called hemolysis or HUS. The worry with that one is damage to his kidneys since his body is trying to get rid of so many toxins. She still isn't ruling out the possibility of leukemia but will know more around 10 this morning when more labs come back. He is very anemic and that seems to be one of the biggest concerns right now. They began a blood transfusion around 3 a.m. to try to boost his red blood cell count. They only gave him 100 cc's (about 3 oz) over the course of 3 hours and he had no adverse reactions. They continue to give him lots of fluid and medications to help him get rid of all the toxins in his body.

I have to find comfort in being at the most amazing childrens hospital in the country. They have an oncologist, a nephrologist, a pathologist, and countless nurses taking the best care he could possible get. They are being extremely careful to address every issue as it comes up.

Hank is being so brave. He has had more poking a prodding in the past 12 hours than in his entire life combined. He understands he is sick but doesn't know much else. I'm trying to keep it together in front of him. Randy is being the rock that he always is, giving Hank and I all the support he can muster even though he is struggling as well. I can't thank my family and friends enough for the love, prayers, and positive thoughts they are sending our way. Kate and Dan had Max last night so I know he was well taken care of. I couldn't possibly handle all of this without all of you.

I will try to keep this updated as soon as I get more information. Sorry for they typos, and confusing medical terminology. Randy, Hank, and I send our love and thanks.

In Sickness and In Health

My poor kids have had some serious stomach illness over the past few days. Max is about 90% back to normal but my poor Hank-man is still struggling. He doesn't let his throw up bowl get too far away. I can't get him to eat anything. Luckily he will drink a little here and there.

He sleeps most of the day and says very little.

This face breaks my heart. How I wish I could take the sickness away from him.

He even missed school pictures today. I just hope that he wakes up and the healthy Hank is back. I miss him. It makes me really appreciate having healthy kids most of the time because it sucks when they are sick.

Max is up to his old tricks again.

He really is missing playtime with Hank.

I realizes he has red-eye in these pictures but I didn't fix it because it just fits his personality these days. He's a bit possessed if you will.

It always amazes me when my kids or myself have bouts of sickness, it seems we have never been well, or I can't remember us feeling good. The following pictures are of my sweet Grandma Joanne's 80th birthday celebration only 4 days ago. This is to remind me of a time when things were much healthier in the Griffin family.

Max was rocking a fab outfit, skinny jeans and all.

Hank actually had some color to his face. My grandma was a bit under the weather, believe it or not, and still managed to look stylish and gorgeous as ever. I love you Grandma. Hank was just beginning his illness this day but didn't want to miss her party for anything. My kids adore her. Hopefully they didn't share their disease....nothing says Happy Birthday like the stomach flu!

Labor Day at the Cabin

We recently added a new member to our family, his name is Polaris 500 and my kids can't get enough. After countless trips around the neighborhood we were itching to get out and do some real 4-wheeling in the mountains. Scott and Jeri invited us to the cabin for some Labor Day fun so we loaded up the ATV's (as Hank calls them) and headed up.

I clearly couldn't get enough of Max in his helmet. Just when I thought it couldn't get more adorable, he added sunglasses.

Amazing

The boys chose to ride with their dad, big shocker! In an attempt not to feel bad as a solo rider, I collected sunflower heads to ambush my boys on our ride. Jeri and Scott also had their 4-wheelers and showed us some gorgeous scenery.

Just one of the spectacular views.

There were moose everywhere. This one was only 50 yards from the cabin.

The kids had a blast both on and off the 4-wheelers. They wrestled...

and wrestled some more, ate popcorn, watched movies, fed chipmunks, and pretty much did whatever they wanted.

Aww, cute mother and son photo after a long ride. Thank you so much Jeri and Scott. They fed us, entertained us and gave us a truly relaxing Labor Day weekend. They better be careful or we might end up there every weekend!

Hank passed out on the ATV.

Max passed out in his car seat. I'd say that makes for one successful trip!

I'm exhausted!

Last weekend was non stop entertainment all day, every day! Rusty and Collette came to town and we spent some quality time together. Here are some of the highlights.

Collette and Rusty made a special effort to attend Hank's first soccer game, even though they had a wedding to attend just moments after. He loved it!

Assistant coach Randy helped him with his skills before game time.

Hank scored the first goal about 30 seconds into the game!

His coach was pretty impressed with Hank after he scored his second goal.
(His coach is wearing shin guards in case you were wondering! He's pretty intense.)

Go Strikers!

Hank had his own personal cheering squad with Rusty, Collette, Grandpa Griff, Grandma Jackie and Sarah. Thank you guys for coming. It really meant a lot to Hank. Not to worry if you missed out on the action, he has 6 more games this season.

Mino can't wait for his turn in the spotlight. Until then, he'll just look adorable.

We had a delicious BBQ at Jeri and Scott's house as well as many other nights of good food and great conversation. Let's just say we all know a little bit more about Randy after a long night at the Griffin residence!

Oldest siblings vs. Youngest Siblings

I want to say the youngsters kicked their butts but I could be wrong.

After our plans to hike to Timp Cave were canceled due to the weather, we took the kids to the Children's Museum and the planetarium. Rusty was one proud uncle when Hank declared he wanted to be a scientist when he grows up.
(I realize he looks like he wants to be a cowboy in this picture!)


Max really enjoyed pumping his own gas, definitely a highlight.

Please disregard me in this photo...note to self, 3D glasses aren't a good look but I will sacrifice my vanity to document our trip to the Imax theater to see "Hubble 3D". As the opening credits began to roll, and a giant 3D IMAX came on the screen, Max yelled "Hey that says MAX!"
The movie was excellent, definitely mind blowing for my little brain.

No outing would be complete without a lunch experience with a tired Max-man. After all that, Hank still wanted to hang out with Rusty and Collette so they made the trek to watch his TaeKwonDo class. He was beyond thrilled to have an audience. They really made an effort to spend a lot of time with their nephews. We had such a fun weekend, I really wish they lived closer. Come back soon!

As if we weren't partying hard enough with the Griffin clan, we still managed to have a raging birthday party for Brett. So what if it was pouring rain and 55 degrees, I say bring out the water slide.

We enjoyed the show under the umbrella, awww mom, why are you so freaking adorable?

Max assured me he wasn't cold.

Hank said he would never stop sliding.

And Isabel, well, there are no words!

Jack and Max warmed up in the tub while Sarah...

slid like there was no tomorrow! You go sis!

I couldn't resist posting this picture...I'm in awe.
The good times keep on coming! We are planning one final adventure before summer is officially over...stay tuned!