So this weekend was HUGE in the Lewis family! There was so much going on!
Saturday my younger oldest brother (sounds funny) Jordan graduated from High School . . . . FINALLY!
That sounds funny. It's not like he went any longer than anyone else. Well that's not true, it took me seventeen years to graduate, it took him eighteen, so I guess that means I am smarter . . . or that my birthday is in August and his is in December. . . no I think it means I'm smarter.
But it was a great ceremony, and I am very proud of him for graduating. And now comes the hard part, figuring out what to do from here. Really he's kind of stuck, he can't do a semester at school because he turns 19 in December and will be leaving on his mission, so he just gets to work. Ha ha!
Then Sunday evening we had a HUGE BBQ for him with prime rib YUM YUM! I craved it.
It was nice to get together with some family we haven't seen in awhile and celebrate such a milestone. Only, now I am broke . . .Jordan put the money to good use.
Then Monday, Memorial Day, was my nephew Jack's (Brittany's oldest) 5th birthday. It was pretty hilarious. We walked in the door to his house and he said "Yes it's my birthday, and that is my present" and he took the bag from my hand. I love how uninhibited little kids are. We had a chilli dog cook out and he said the prayer in which he was thankful for presents (twice) and birthdays and cake, and birthdays, and cake, etc etc. It was awesome.
After that we went home and got in bed. Eric and I, well really just me, have been going to bed at increasingly earlier times for a few weeks now. I feel hugely nauseous most of the day and by about 8 o'clock, I just want to sit in bed and watch Ugly Betty. Poor Eric just ends up watching it with me.
I like him.
He is a good husband.
Family Picture
Tuesday, May 31, 2011
The One With Bill Gates' Good Advice
I don't know much about his politics or the way he grew up, but I do know that he is one of the wealthiest men in the world. I think we can all learn something from his advice! And I LOVED this email when I got it, so I had to forward it on!
Bill Gates recently gave a speech at a High School about eleven things they did not and will not learn in school. He talks about how feel-good, politically correct teachings created a generation of kids with no concept of reality and how this concept set them up for failure in the real world.
Rule 1 : Life is not fair - get used to it!
Rule 2 : The world doesn't care about your self-esteem.
Rule 2 : The world doesn't care about your self-esteem.
The world will expect you to accomplish something
BEFORE you feel good about yourself.
Rule 3 : You will NOT make $60,000 a year right out of high school.
Rule 3 : You will NOT make $60,000 a year right out of high school.
You won't be a vice-president with a car phone until you earn both.
Rule 4 : If you think your teacher is tough, wait till you get a boss
Rule 5 : Flipping burgers is not beneath your dignity.
Rule 4 : If you think your teacher is tough, wait till you get a boss
Rule 5 : Flipping burgers is not beneath your dignity.
Your Grandparents had a different word for burger flipping:
They called it opportunity.
Rule 6 : If you mess up, it's not your parents' fault,
Rule 6 : If you mess up, it's not your parents' fault,
so don't whine about your mistakes, learn from them.
Rule 7 : Before you were born, your parents weren't as boring
Rule 7 : Before you were born, your parents weren't as boring
as they are now. They got that way from paying your bills,
cleaning your clothes and listening to you
talk about how cool you thought you were
So before you save the rain forest
from the parasites of your parent's generation,
try delousing the closet in your own room..
Rule 8 : Your school may have done away with winners and losers,
Rule 8 : Your school may have done away with winners and losers,
but life HAS NOT. In some schools, they have abolished failing grades
and they'll give you as MANY TIMES as you want to get the right answer.
*This doesn't bear the slightest resemblance to ANYTHING in real life.
Rule 9 : Life is not divided into semesters.
Rule 9 : Life is not divided into semesters.
You don't get summers off and very few employers
are interested in helping you FIND YOURSELF.
*Do that on your own time.
Rule 10 : Television is NOT real life.
Rule 10 : Television is NOT real life.
In real life people actually have to leave the coffee shop and go to jobs.
Rule 11 : Be nice to nerds.
Rule 11 : Be nice to nerds.
Chances are you'll end up working for one..
LOVE IT! I wish they would teach everyone this, and that everyone would really take it to heart!
Thursday, May 26, 2011
The One With Parker's Hair and the Dishwasher
Parker was "balled as a billiard ball" until he was about ten months old.
It was depressing.
But finally a nice little faux hawk grew and so he has had his hair done EVERY day since then.
I hate it when his hair isn't done. It makes me feel like a bad mom.
Well, Monday our dishwasher crapped out.
Super awesome, it's probably only 4 years old. So we went to Home Depot to get another one.
Plus that we have a savings, minus that we spent some of it on a freaking dishwasher.
It's amazing to me that something that wasn't standard in a house fifteen years ago (you can still get a house without one) is such a HUGE priority now.
I mean, I can hand-wash the dishes. I just don't want to.
And is that worth $500?
YES I THINK SO.
Super lame that dishwashers are either $200 or then immediately jump to $500. I want to be the genius who comes out with a really good MIDDLE dishwasher. Why so expensive? Gosh!
Not to mention the fact that i know NOTHING about dishwashers. Seriously, as long as it cleans my dishes, I don't care about anything else. Steam cleaning? Don't they all do that?
Do you want stainless steel? Well no the rest of our appliances are black. No she wants to know if I want a stainless steel inside of the dishwasher. For what? It makes it quieter.
Hmmm . . . . . .
Anyways, fun adventures getting a dishwasher.
But the funniest thing was that we all went in sweats to the store, and I didn't do Parker's hair after his nap.
Parker looks up from his car seat to the rear view mirror and says,
"OH NO. Mommy! My hair's not dressed!"
Monday, May 23, 2011
The One With The Bubbles
It's no secret, our children love bubbles.
I think most kids do.
I don't so much love when they get blown inside,
But with cute pictures like these, how can I really get upset?
The One Where Daddy Comes to the Zoo
Sadly, Daddy does not usually get to come to the zoo.
What kind of zoo is open from 10-5?
Oh that's right, the Boise Zoo.
So only stay at home mom's, or people with no jobs get to go to the zoo.
Unless you want to go on Saturday with everyone else.
Well last Saturday we went, with everyone else.
We got their early, right after it opened hoping to beat the crowds.
It mostly worked too.
And the kids had fun with Daddy being there.
Oh and did I forget to mention that Miss Preslie is now walking?
It's kind of a frankenstein-inspired prance.
But nontheless, she is walking.
FINALLY!
The One With The Deer And the Pediatrician
So luckily, Parker and Preslie both got their yearly check ups at once. Makes it easier to get it all done at one time then continuously come back to the doctor.
Poor Preslie got FOUR shots.
And it was terrible.
But I felt worse for Parker. They told us he didnt' need any shots.
Then we got there and they decided he needed two.
Well Parker's check up went well. He is 36 lbs (not quite big enough for a normal booster yet) and 39 3/4 inches tall. Good thing we had him in elevator shoes at Disneyland! He hits pretty smack dab in the 50%.
Dr. Lanuza was also impressed that not only was he potty trained, but that he is potty trained and has never had an accident . . . not even at night.
I attribute this to us waiting until he was ready, not that we are amazign potty trainers.
The doctor was very impressed with his skull and cross bone boxer briefs that he had on.
She also had to do the normal WHOLE physical.
After she got done making sure he was all okay down there, she pulled up his boxers, but apparently hasn't dealt with a boy for awhile cause she kidn of let them smack back on.
And so Parker yells,
"OWW You hurt my weeter."
Then Dr. Lanuza was asking him about all the foods he eats. Parker is a pretty good eater.
He eats asparagus, something I didn't touch until I was 22.
He eats broccoli, and cabbage, and bear and moose.
We are lucky that he is not a picky eater
She asked him, "Parker, what's your favorite food?"
He thinks for a second, then says,
"DEER!"
At which point the doctor looked truly horrified and said, "He eats deer?"
That's right doc, yes he does!
The One With The Goggles
When we wer in Portland in March gettign Parker's teeth worked on, Denny had us go and use some of his trade at Shortt Supply. Parker had to get goggles.
He just HAD too.
Even though he has never worn them, probably didn't even know what they were. He wanted them.
So he uses them in the tub, because we rarely go swimming - I know we are lame parents.
But Preslie got a hold of them the other day, and even put them on herself.
We have such a genius for a daughter.
The One With MOMMY!!!
Preslie has started saying "Mommy".
And it is awesome.
Not that she didn't say it before, she did, but now she says it and knows the response she will get. She says it now because she wants me, she's calling for me. The other night Eric and I were in bed watching Ugly Betty, and I hear "MOOOMMMMMYYY" on the monitor. It was so cute I could not ignore it.
I walked into her room and there she was standing up, holding on to her crib, arms outstreched like she had finally figured out that when she yells for me I will come get her.
It is amazing, I LOVE it!
She has also discovered her new favorite movie, The Princess And The Frog.
The new Disney version.
I have to admit, I wasn't completely in love with it when I first saw it (and I'm thinking that was most people's reaction and that is why it is already on instant in Netflix), but the more I see it (which seems to be at least once a day) the more I like it.
I love the idea of Evangeline in it, SO CUTE.
But I told Eric the other day, isn't it funny that in this Disney movie we are supposed to like the girl who wants to marry someone just because he is a Prince, and for no other reason. In every other Disney movie, you aren't supposed to like that girl. Think about it.
A few weekends back was the father/son's campout in our ward. They went to Given's, just on an overnighter, but Eric and Parker took up so much food, it was hilarious. Eric was sitting in bed the other night eating his left over honey roasted peanuts (seriously, FIVE BAGS of left over peanuts) and Preslie came totteling up and yelled at him til he gave her one.
She then freaked out for a half an hour straight yelling and pointing at peanuts and wanting more and more peanuts. It was quite funny, and they are still one of her favorite things (which is fairly amazing seeing as how she gets a new food she wants to eat every other day).
We also went to the doctor for her 1 year shots - we are a little behind given her hospital stay - and she is weighing in at 21 pounds. Still down about three pounds from before her hospital stay.
She is also 29 1/2 inches tall.
She is about 25% for weight, 20% for height. Funny cause I have always thought she was a little rolly polie. But this does explain why all of her friends are bigger than her now, even the ones born a few months after.
Drum roll . . . . . her head measures in at 46 3/4cm that is 75%! Yes, our kids will be geniuses because they ALL have ginormous heads!
Monday, May 16, 2011
The One With The One In A Billion Jackpot
Tuesday went by, and there was no phone call. I called their office at lunchtime and left a message. I was beyond ecstatic when I saw on the caller ID that their office was calling.
But it wasn't Dr. Camilo, or his nurse. It was a different nurse calling to tell me that Dr. Camilo was in-patient this week and that it woudl probably be this evening after he had gotten off work before he called us. But she did say she saw notes that he had looked at the results, but needed to double check them.
I wasn't sure how to take that one. Really he woudl need to double check under either scenario. So we were still playing the waiting game. We had family dinner at my grandparent's house that night, still waiting for the phone call, and by 9pm I pretty much had stopped carrying my phone with me at all times, assuming he wasn't going to call that night.
Wednesday morning I called their office again. This may make me sound like an overbearing person. But the way I see it is they told us they would call first thing Tuesday morning, and they didn't, it has to be okay for me to follow up with them. Besides, I figured they constantly had parents concerned about their kids so it wouldn't be out of the ordinary for me to call.
Well the phone rang, and it was my mom. Then it rang again, and it was my sister. Third time, it was Eric. Fourth time it was the office. I was starting to hyperventilate every time my phone rang thinking it would be the doctor's and then it never was! I'm serious when I say that when the caller ID finally said "Dr. Camilo" I almost cried.
It was his nurse. She talked to me, confirmed the results, I thanked her, and hung up.
I was in disbelief. utter disbelief. I couldn't believe what she had told me. My fingers were shaking as I dialed Eric's number on my phone. It took him FOREVER to pick up.
"I just got off the phone with the doctor's office."
Big deep breath and a sigh on his end, like he was preparing for some potnentially bad news. "What did they say?"
"Well, I don't have the cell."
Really?
"And you don't have the cell."
Seriously? Grr . . . . .(really it was mumbling but I wasn't paying attention to what he was saying)
" . . . . But neither does Preslie. . . . "
mumbling, pause . . . . What?"
When teh nurse told me that, I knew immediately what had happend. Dr. Rand, of all people, the infectious disease doctor, who does not have a specialty in oncology had posed it as a one in a billion chance when he told me about what her blood work showed. He had said, "Her sickness that put her in the hospital was so severe, and had so many stages, stages we don't even know yet. There is a chance that whatever virus she had, reacted perfectly with her cells, and created these nuclei that will go away on their own, and won't ever be a problem."
I reminded Eric of that, and he was speechless, I then told him what the nurse had said.
"I've never heard of these cells just going away on their own, so I asked Dr. Camilo, and he said it is a one in a billion chance that the molecular make-up of her cells responded perfectly to the one specific virus that could cause her white blood cells to take on the appearance of these cancer cells. After 30 days (the lifespan of a WBC) they die, and there is no more pseudo cancer cells in the system. He absolutely told me after we walked out of your exam room on Monday that it could only be the two options he gave you: cancer, or genetic. He didn't even think this was an option since she has had three blood tests that show it. He said the chances are so small, one in a billion, that he didnt' even consider it an option. We don't need to see you ever again, unless you want to come and visit."
I told her thank you, and that that news was worth waiting for. It was incredible to call up Eric and tell him, I have never been so happy that I literally cried! And calling the rest of my family and letting them know the good news was amazing too.
Their explanation: One in a billion chance that the molecular make-up of her cells responded to the perfect virus to create these abnormal cells with no further difficulties.
Our answer: We just witnessed a miracle.
But it wasn't Dr. Camilo, or his nurse. It was a different nurse calling to tell me that Dr. Camilo was in-patient this week and that it woudl probably be this evening after he had gotten off work before he called us. But she did say she saw notes that he had looked at the results, but needed to double check them.
I wasn't sure how to take that one. Really he woudl need to double check under either scenario. So we were still playing the waiting game. We had family dinner at my grandparent's house that night, still waiting for the phone call, and by 9pm I pretty much had stopped carrying my phone with me at all times, assuming he wasn't going to call that night.
Wednesday morning I called their office again. This may make me sound like an overbearing person. But the way I see it is they told us they would call first thing Tuesday morning, and they didn't, it has to be okay for me to follow up with them. Besides, I figured they constantly had parents concerned about their kids so it wouldn't be out of the ordinary for me to call.
Well the phone rang, and it was my mom. Then it rang again, and it was my sister. Third time, it was Eric. Fourth time it was the office. I was starting to hyperventilate every time my phone rang thinking it would be the doctor's and then it never was! I'm serious when I say that when the caller ID finally said "Dr. Camilo" I almost cried.
It was his nurse. She talked to me, confirmed the results, I thanked her, and hung up.
I was in disbelief. utter disbelief. I couldn't believe what she had told me. My fingers were shaking as I dialed Eric's number on my phone. It took him FOREVER to pick up.
"I just got off the phone with the doctor's office."
Big deep breath and a sigh on his end, like he was preparing for some potnentially bad news. "What did they say?"
"Well, I don't have the cell."
Really?
"And you don't have the cell."
Seriously? Grr . . . . .(really it was mumbling but I wasn't paying attention to what he was saying)
" . . . . But neither does Preslie. . . . "
mumbling, pause . . . . What?"
When teh nurse told me that, I knew immediately what had happend. Dr. Rand, of all people, the infectious disease doctor, who does not have a specialty in oncology had posed it as a one in a billion chance when he told me about what her blood work showed. He had said, "Her sickness that put her in the hospital was so severe, and had so many stages, stages we don't even know yet. There is a chance that whatever virus she had, reacted perfectly with her cells, and created these nuclei that will go away on their own, and won't ever be a problem."
I reminded Eric of that, and he was speechless, I then told him what the nurse had said.
"I've never heard of these cells just going away on their own, so I asked Dr. Camilo, and he said it is a one in a billion chance that the molecular make-up of her cells responded perfectly to the one specific virus that could cause her white blood cells to take on the appearance of these cancer cells. After 30 days (the lifespan of a WBC) they die, and there is no more pseudo cancer cells in the system. He absolutely told me after we walked out of your exam room on Monday that it could only be the two options he gave you: cancer, or genetic. He didn't even think this was an option since she has had three blood tests that show it. He said the chances are so small, one in a billion, that he didnt' even consider it an option. We don't need to see you ever again, unless you want to come and visit."
I told her thank you, and that that news was worth waiting for. It was incredible to call up Eric and tell him, I have never been so happy that I literally cried! And calling the rest of my family and letting them know the good news was amazing too.
Their explanation: One in a billion chance that the molecular make-up of her cells responded to the perfect virus to create these abnormal cells with no further difficulties.
Our answer: We just witnessed a miracle.
The One With the Oncologist
May 9th was the big day! The day we went and saw the oncologist for Preslie. Honestly, hearing the word oncologist in general is tough, but knowing that it is in conjuction with your 14 month-old daughter, makes it harder. I know think the two worst words in human language (at least when put together) are "Pediatric Oncologist". Those two words just aren't supposed to go together, I mean Children's Cancer Specialist? Children aren't suposed to have cancer! That is just insane!
I was afraid that Monday was just going to snail crawl by. Our appointment was at 2, and we had to be there at 1:30 to register. Brittany said she would watch Parker, and the fact that we live clear on the other side of town from St. Luke's Boise meant I had to leave at about noon to get Parker dropped off, and get back on the freeway and to the hospital in time.
The Pediatric MSTI (Mountain States Tumor Institute) is in the Children's "specialty" hospital next to St. Luke's downtown. I walked in the downstairs level and there it was off to the right "Pediatric MSTI Clinic" and I'm sitting there thinking about my dad. He was diagnosed with Testicular cancer in 2009, underwent surgery to remove the tumor, and then 4 rounds of chemo. And it was tough chemo. I guess the strength of the chemo depens a lot on the type of cancer you have. Stage 4 breast cancer is not curable under most scenarios, so the doses of chemo are not so extreme, it's more of a make the patient comfortable. Testicular cancer is one of the only kinds of cancer that is considered curable, so they hit it really hard with chemo. During those six months my dad was green and yellow, he lost all of his hair, most of his eyebrows and eyelashes, and was sick most of the time. Noise bothered him. Light bothered him. Chemo causes disasterous effects on your intestinal system. And my dad was 49 when he was diagnosed. More than capable of taking care of himself for the most part and relying occasionally on my mom to help bring him medicine. He could talk, he could communicate with people. I just kept thinking of Preslie, and how she only says a handful of words. Most of the time we find out what she wants by trial and error, or her "uh uh uhing" at something and pointing. She can't tell me if her stomach hurts. Or if she needs some tylenol because the light is hurting her eyes, or the noise is giving her a headache. She's still in diapers, so the poison that they would be injecting into her system would end up in her diaper, against her skin, cause terrible sores, and she would cry and look at me to fix it and make her better, and I would just end up taking her back to another treatment.
My parents have a neighbor who is a MSTI nurse. She told my mom that they woudln't have referred Preslie's case to an oncologist unless they knew it was cancer. That really didn't leave much room for hope. My parents also have a lady that goes to their church who had her 2 year old boy diagnosed with leukemia and they went back East for treatment. We were told to expect to do some treatment, most importantly a bone marrow or stem cell transplant in Seattle or Salt Lake at the Children's hospital.
Everyone kept telling us how hectic and busy things were going to get, and how we would need to let family come in and help out and let Eric and I have a break, and all I kept thinking was, "You're seriously thinking I will ever leave my baby girl again? I can't fix this, but I can be there to help her through it."
And all these thoughts just kept running into my head the fifteen steps that I had to walk from the entrance of the Children's Hospital to the entrance of the MSTI clinic. I walked in and checked in, the staff was so nice. I'm sure they deal with ailing kids and concerned parents on a daily basis, but I appreciated their concern, and how they would sit and smile at Preslie. She told me to take a seat until a nurse came out to register us. I looked around at the other people in the waiting room.
Sometimes I forget that "pediatric" applies to anyone 18 and under. I looked aroudn and the only other two patients in the waiting room were at least 16. I kept thinking, what am I doing here with this little one year old? The boy in front of me had a cast on his leg and crutches, his mom would get up and grab magazines for him - I was pretty sure he had just had a bone marrow transplant into his shin bone. The other was a teenage girl sitting with her older brother, playing on her laptop waiting for them to call her back to a treatment room. They both had hair, they both looked surprisingly well, considering what was no doubt going on in their bodies at the time.
The registration nurse came out and took me back to her office. Our experience immediately became better when we walked into a room covered in Minnie and Micky Mouse, I think Preslie was in heaven. Eric met us in that room, and we were there for 30 minutes registering Preslie into every system they had. And I kept thinking, this must be it, they must be registering us so extensively because they know what she has, and they know we will be here. But I still couldn't believe it.
We went back out into the waiting room for our appointment. And I just kept drifting between thoughts of "this is going to be like a new home for us" and "there's no way, he's going to discharge us because nothing is wrong." It's like all you want to do is be right. You want to leave the doctor's office and say "Ha, I KNEW it! I knew that's what he was going to say!" But reason and logic were not on my side. I'd had enough of logic, logic and everyone logical had been telling me for three weeks that our daughter had leukemia and the next two years were going to be very hard on us. Logic kept telling me to be prepared for the blow. But my heart just didn't want it to be true.
Sarah, Dr. Camilo's nurse came out and got us, she took us back to a room covered in butterflies hanging from the ceiling for Preslie to stare at. She said Dr. Camilo was on in-patient services this week (he was attending to all patients from their clinic that were hospitalized) and was running a little late. She took a full history from us, then said that a resident was in the clinic too and Dr. Camilo was interested to see what the resident would come up with.
Then the resident came in, and we were with him for a half an hour, doing all sorts of physical checks, and more history and questions. They were all very nice, if it hadn't been such a daunting prospect it could have been an enjoyable experience.
Dr. Camilo finally came in and talked with us, got a full history again and then laid the "good news/bad news" on us.
Good News: It is VERY rare that a child be diagnosed with myelodysplasia (pre-leukemia) which is what the Pelger-huet nucleus in her blood work was showing. It does happen, and he had treated it, but it is rare.
Bad News: If she is diagnosed with myelodysplasia, she will have full blown leukemia in less than two years.
Good News: It is possible that the nucleus anamoly they are seeing is genetic, and that one of us (eric or I) may have the cell ourselves. This would mean she was born with funky looking cells, and they would never turn into anything.
Bad News: It is very rare that the Pelger-Huet nucleus is a genetic cell.
He wanted to run some blood work on all three of us to see if he could see any sort of genetic patterns in us. Eric said, "What are the chances that one of us has passed it on to her?" Dr. camilo "Very small" I asked him what the chances were that she had myelodysplasia, he said "Very small" so I said, you're telling me we have two one-in-a-million chances to choose between, and he said yes.
We were supposed to be able to get the results back in 20 minutes, but the hospital took too long taking our blood work and Dr. Camilo said he woudl call us on Tuesday with the results. We were really bummed. It was like we were playing the waiting game all over again. It seemed like we had been playing the waiting game for an entire month, and that's not easy when the potential health of your one year old is on the line.
But we still left with a renewed sense of hope. The weight on our shoulders was a little lighter. We now had something to hope for, a light at the end of the tunnel, rather than there being no other option before, we now had something to hope for.
I was afraid that Monday was just going to snail crawl by. Our appointment was at 2, and we had to be there at 1:30 to register. Brittany said she would watch Parker, and the fact that we live clear on the other side of town from St. Luke's Boise meant I had to leave at about noon to get Parker dropped off, and get back on the freeway and to the hospital in time.
The Pediatric MSTI (Mountain States Tumor Institute) is in the Children's "specialty" hospital next to St. Luke's downtown. I walked in the downstairs level and there it was off to the right "Pediatric MSTI Clinic" and I'm sitting there thinking about my dad. He was diagnosed with Testicular cancer in 2009, underwent surgery to remove the tumor, and then 4 rounds of chemo. And it was tough chemo. I guess the strength of the chemo depens a lot on the type of cancer you have. Stage 4 breast cancer is not curable under most scenarios, so the doses of chemo are not so extreme, it's more of a make the patient comfortable. Testicular cancer is one of the only kinds of cancer that is considered curable, so they hit it really hard with chemo. During those six months my dad was green and yellow, he lost all of his hair, most of his eyebrows and eyelashes, and was sick most of the time. Noise bothered him. Light bothered him. Chemo causes disasterous effects on your intestinal system. And my dad was 49 when he was diagnosed. More than capable of taking care of himself for the most part and relying occasionally on my mom to help bring him medicine. He could talk, he could communicate with people. I just kept thinking of Preslie, and how she only says a handful of words. Most of the time we find out what she wants by trial and error, or her "uh uh uhing" at something and pointing. She can't tell me if her stomach hurts. Or if she needs some tylenol because the light is hurting her eyes, or the noise is giving her a headache. She's still in diapers, so the poison that they would be injecting into her system would end up in her diaper, against her skin, cause terrible sores, and she would cry and look at me to fix it and make her better, and I would just end up taking her back to another treatment.
My parents have a neighbor who is a MSTI nurse. She told my mom that they woudln't have referred Preslie's case to an oncologist unless they knew it was cancer. That really didn't leave much room for hope. My parents also have a lady that goes to their church who had her 2 year old boy diagnosed with leukemia and they went back East for treatment. We were told to expect to do some treatment, most importantly a bone marrow or stem cell transplant in Seattle or Salt Lake at the Children's hospital.
Everyone kept telling us how hectic and busy things were going to get, and how we would need to let family come in and help out and let Eric and I have a break, and all I kept thinking was, "You're seriously thinking I will ever leave my baby girl again? I can't fix this, but I can be there to help her through it."
And all these thoughts just kept running into my head the fifteen steps that I had to walk from the entrance of the Children's Hospital to the entrance of the MSTI clinic. I walked in and checked in, the staff was so nice. I'm sure they deal with ailing kids and concerned parents on a daily basis, but I appreciated their concern, and how they would sit and smile at Preslie. She told me to take a seat until a nurse came out to register us. I looked around at the other people in the waiting room.
Sometimes I forget that "pediatric" applies to anyone 18 and under. I looked aroudn and the only other two patients in the waiting room were at least 16. I kept thinking, what am I doing here with this little one year old? The boy in front of me had a cast on his leg and crutches, his mom would get up and grab magazines for him - I was pretty sure he had just had a bone marrow transplant into his shin bone. The other was a teenage girl sitting with her older brother, playing on her laptop waiting for them to call her back to a treatment room. They both had hair, they both looked surprisingly well, considering what was no doubt going on in their bodies at the time.
The registration nurse came out and took me back to her office. Our experience immediately became better when we walked into a room covered in Minnie and Micky Mouse, I think Preslie was in heaven. Eric met us in that room, and we were there for 30 minutes registering Preslie into every system they had. And I kept thinking, this must be it, they must be registering us so extensively because they know what she has, and they know we will be here. But I still couldn't believe it.
We went back out into the waiting room for our appointment. And I just kept drifting between thoughts of "this is going to be like a new home for us" and "there's no way, he's going to discharge us because nothing is wrong." It's like all you want to do is be right. You want to leave the doctor's office and say "Ha, I KNEW it! I knew that's what he was going to say!" But reason and logic were not on my side. I'd had enough of logic, logic and everyone logical had been telling me for three weeks that our daughter had leukemia and the next two years were going to be very hard on us. Logic kept telling me to be prepared for the blow. But my heart just didn't want it to be true.
Sarah, Dr. Camilo's nurse came out and got us, she took us back to a room covered in butterflies hanging from the ceiling for Preslie to stare at. She said Dr. Camilo was on in-patient services this week (he was attending to all patients from their clinic that were hospitalized) and was running a little late. She took a full history from us, then said that a resident was in the clinic too and Dr. Camilo was interested to see what the resident would come up with.
Then the resident came in, and we were with him for a half an hour, doing all sorts of physical checks, and more history and questions. They were all very nice, if it hadn't been such a daunting prospect it could have been an enjoyable experience.
Dr. Camilo finally came in and talked with us, got a full history again and then laid the "good news/bad news" on us.
Good News: It is VERY rare that a child be diagnosed with myelodysplasia (pre-leukemia) which is what the Pelger-huet nucleus in her blood work was showing. It does happen, and he had treated it, but it is rare.
Bad News: If she is diagnosed with myelodysplasia, she will have full blown leukemia in less than two years.
Good News: It is possible that the nucleus anamoly they are seeing is genetic, and that one of us (eric or I) may have the cell ourselves. This would mean she was born with funky looking cells, and they would never turn into anything.
Bad News: It is very rare that the Pelger-Huet nucleus is a genetic cell.
He wanted to run some blood work on all three of us to see if he could see any sort of genetic patterns in us. Eric said, "What are the chances that one of us has passed it on to her?" Dr. camilo "Very small" I asked him what the chances were that she had myelodysplasia, he said "Very small" so I said, you're telling me we have two one-in-a-million chances to choose between, and he said yes.
We were supposed to be able to get the results back in 20 minutes, but the hospital took too long taking our blood work and Dr. Camilo said he woudl call us on Tuesday with the results. We were really bummed. It was like we were playing the waiting game all over again. It seemed like we had been playing the waiting game for an entire month, and that's not easy when the potential health of your one year old is on the line.
But we still left with a renewed sense of hope. The weight on our shoulders was a little lighter. We now had something to hope for, a light at the end of the tunnel, rather than there being no other option before, we now had something to hope for.
The One With Wicked
For Mother's day my Grandma Lewis took all of her daughters and granddaughters to see Wicked.
If you haven't seen it. . . . . . well you're too late, it left Boise, but you can see it somewhere else. It was AMAZING! Seriously the best one I have been too . . . . it may even be better than Phantom of the Opera on Broadway . . . . okay maybe they are tied for first.
The story line is awesome, it just makes sense, and it makes The Wizard of Oz make sense - like hello why would there be a tin man and a scarecrow? And the music is great, the acting was great, the twists and turns in the story line were great, and the company was great!
I would love to write about the great story and tell all the secrets, but that's kind of like telling someone the plot of a movie and ruining the surprise and amazement, so instead I will just tell everyone that you should go and see it. EVEN GUYS! I even looked into getting tickets for Eric and I to go together, but seriously $375 for floor seats, a PIECE! I don't think so.
Bottom line: GO SEE IT!
If you haven't seen it. . . . . . well you're too late, it left Boise, but you can see it somewhere else. It was AMAZING! Seriously the best one I have been too . . . . it may even be better than Phantom of the Opera on Broadway . . . . okay maybe they are tied for first.
The story line is awesome, it just makes sense, and it makes The Wizard of Oz make sense - like hello why would there be a tin man and a scarecrow? And the music is great, the acting was great, the twists and turns in the story line were great, and the company was great!
I would love to write about the great story and tell all the secrets, but that's kind of like telling someone the plot of a movie and ruining the surprise and amazement, so instead I will just tell everyone that you should go and see it. EVEN GUYS! I even looked into getting tickets for Eric and I to go together, but seriously $375 for floor seats, a PIECE! I don't think so.
Bottom line: GO SEE IT!
Wednesday, May 4, 2011
The One With the Second Diagnosis
So our weeks had been going by okay, and we were just starting to get used to the idea that Preslie didn't have anything wrong with her and that we were just going to have to have her in a sweater in the middle of August due to her core temperature staying at a steady 96.2 degrees.
On April 26th, a Tuesday, when Eric and I got home after work and a family party we opened a letter from Dr. Rand (Infectious Diseases) detailing out our visit with him the Friday before. It also said that all the tests looked good, and he referred her back to our personal Pediatrician with the diagnosis of an overactive autonomic nervous system.
Wednesday, the 27th, I had the day off. Two days out of the month I get together with other ladies from church, and we teach 8-11 year old girls fun things. It's called Activity Days, and I love it. We have 28 girls in our group, although all of them are not always there, but usually there is a pretty good number. This time I had one of the activities, we were making bath salts for our Mom's for Mother's Day. I had gotten all of the supplies in the car, and left to pick up one of the girls in our neighborhood. Right as I pulled into the church parking lot my cell phone started ringing.
I looked at it, didn't recognize the number, and debated briefly between just ignoring it. I finally decided to pick it up.
"Hi Crystal, this is Dr. Rand, how are you?"
I told him I was good. I had gotten his letter yesterday and was glad that everything seemed to be looking okay.
"Well, that's actually the reason why I called. . . ."
Uh-oh.
We then spent the next twenty minutes on the phone while I was trying to set up this activity, putting chairs away in the rooms, setting up tables, getting the supplies out, and trying to talk to this doctor while there was a young girl in the room with me.
He told me that he had a pathologist double, and triple check some blood smears because West Valley (the first hospital) had reported seeing some interesting things, and they had been corroborated by St. Luke's. He said he'd just gotten off the phone with the pathologist who reported seeing something called a "Pelger-Huet nucleus" in her smears. Dr. Rand didn't even know what it was, he said he wikipedia'd it. Then he explained to me that this nucleus is seen in blood when children have an advanced case of myelodysplasia, and that myelodysplasia most commonly in children her age, displays as leukemia.
I was just sitting there, nothing was sinking in. He just kept saying, "Are you understanding what I'm saying? Am I explaining this well?"
I told him yes, I understood, and that I was grateful for his call. He told me he was sending me back to our pediatrician for further blood tests. He said there was a slight possibility that whatever sickness put her in the hospital had caused problems with some of her blood cells, and it might clear up on it's own.
The activity with all the girls was surreal. I was there, trying to teach these young girls that I love, how to make bath salts for their mom's, and yet I couldn't get that phone call out of my head. I kept looking over at Preslie crawling around ont he floor and kept thinking, oh my gosh, we're going to have to do chemo, she's going to lose all of her hair . . .
Finally the activity was over, I ran out to my car, got the kids in and drove out to Meridian to my parent's house where Eric and I sat down and told my parents, and grandparents, and my sister. Eric gave Preslie a blessing, my Dad gave me one, and my Grandpa Carpender gave Eric one. (Blessings are personal prayers on behalf of one person, quite often with promises and guidance given.)
Both Eric and I got the distinct feeling that things were going to be okay, we don't feel like it is Preslie's time to go. She will be okay. But we definitely feel like the next couple of months, maybe even years could be extrememly difficult for us, with the opportunity for huge growing experiences.
Thursday morning, Dr. Lanuza called, she said she had talked with Dr. Rand, and set up an appointment for Preslie to come in for her one year immunizations (that we are behind on because of how sick she keeps getting) and blood tests on May 20th. The date seemed like forever away, but they were hoping that the longer they waited, if on the slim chance it did end up being her sickness tearing up her blood cells, that she would be better by the time they took the blood test. She also said that she had a call in to the Hematology/Oncology clinic here in Boise and she would call me when she heard from them.
That afternoon, Dr. Lanuza called back. She told me she had just gotten off the phone with Dr Camilo, the Oncologist. Her exact words were, "He has reviewed the case and has decided to take over from here, he wants to talk with you guys and take blood work, he doesn't want me involved."
Well that kind of seemed to seal the deal. There's only one reason an oncologist gets involved, right?
So the Oncologist's office called on Monday. She said Dr. Camilo had reviewed all of Preslie's case notes, she said that the oncologists then triage the patients. If things look really bad, they ask that the patient be seen right away (that day), then it's within 1-2 weeks, or the first available appointment (which is usually two months out). She said that if it made us feel any better we were in the middle, so chances are it didn't mean things were too terrible.
That does make me feel better.
It's funny cause when we left Dr. Rand's office after the first diagnosis of an overactive autonomic nervous system, I still felt really uneasy. Things just didn't seem finalized to me, it just seemed like no one could explain what was going on, so they didn't try looking elsewhere. After the phone calls letting us know blood tests were looking like leukemia, even with as terrible of a diagnosis as that is, I was comfortable. It's not that I want her to deal with that, I would rather take that burden, but I know that childhood leukemia survival rates are up around 100% and that just seems to help in explaining what has been going on, why she is always sick, why she has so many problems.
Myelodysplasia can also mean severe anemia requiring frequent blood transfusions (I'm not sure what frequent means, I think that's a relative term), and several different stages of anemia that all seem to progress into leukemia. If this ends up being what the Oncologist diagnoses Preslie with, it appears almost positive that within the next two years, or earlier, she will end up needing a bone marrow or stem cell transplant. Fun and exciting times I tell you.
But through all of this, I am reminded that God is good, and he knows our lives, and he knows the outcomes of our lives before we even do. I'll share one of the quickest examples.
Eric and I were talking about seeing if we could get on Aflac's Cancer policy, just as a supplement to our insurance. I called our business's original rep who I can never get a hold of, then I started sending an email to his boss. I have never talked to this lady before on the phone, I have sent a couple emails back and forth, but I've never met her, don't know anything about her.
I decided to call her instead of sending the email. I called her Tuesday morning and said, "I was hoping to review the possibility of getting signed up under the maternity and cancer policies with you, do you have time to discuss them?"
And she said, "Funny story, I am sitting in the parking lot, right in front of your building. I felt like I needed to come in and talk with you guys."
And with situations like that, I know that everything will be okay. Even if that means leukemia, and chemo, and radiation for two years, and no hair, and bone marrow transplants, and excessive hospital bills, and stress beyond belief . . . . there is an end to that tunnel, and everything will be okay.
On April 26th, a Tuesday, when Eric and I got home after work and a family party we opened a letter from Dr. Rand (Infectious Diseases) detailing out our visit with him the Friday before. It also said that all the tests looked good, and he referred her back to our personal Pediatrician with the diagnosis of an overactive autonomic nervous system.
Wednesday, the 27th, I had the day off. Two days out of the month I get together with other ladies from church, and we teach 8-11 year old girls fun things. It's called Activity Days, and I love it. We have 28 girls in our group, although all of them are not always there, but usually there is a pretty good number. This time I had one of the activities, we were making bath salts for our Mom's for Mother's Day. I had gotten all of the supplies in the car, and left to pick up one of the girls in our neighborhood. Right as I pulled into the church parking lot my cell phone started ringing.
I looked at it, didn't recognize the number, and debated briefly between just ignoring it. I finally decided to pick it up.
"Hi Crystal, this is Dr. Rand, how are you?"
I told him I was good. I had gotten his letter yesterday and was glad that everything seemed to be looking okay.
"Well, that's actually the reason why I called. . . ."
Uh-oh.
We then spent the next twenty minutes on the phone while I was trying to set up this activity, putting chairs away in the rooms, setting up tables, getting the supplies out, and trying to talk to this doctor while there was a young girl in the room with me.
He told me that he had a pathologist double, and triple check some blood smears because West Valley (the first hospital) had reported seeing some interesting things, and they had been corroborated by St. Luke's. He said he'd just gotten off the phone with the pathologist who reported seeing something called a "Pelger-Huet nucleus" in her smears. Dr. Rand didn't even know what it was, he said he wikipedia'd it. Then he explained to me that this nucleus is seen in blood when children have an advanced case of myelodysplasia, and that myelodysplasia most commonly in children her age, displays as leukemia.
I was just sitting there, nothing was sinking in. He just kept saying, "Are you understanding what I'm saying? Am I explaining this well?"
I told him yes, I understood, and that I was grateful for his call. He told me he was sending me back to our pediatrician for further blood tests. He said there was a slight possibility that whatever sickness put her in the hospital had caused problems with some of her blood cells, and it might clear up on it's own.
The activity with all the girls was surreal. I was there, trying to teach these young girls that I love, how to make bath salts for their mom's, and yet I couldn't get that phone call out of my head. I kept looking over at Preslie crawling around ont he floor and kept thinking, oh my gosh, we're going to have to do chemo, she's going to lose all of her hair . . .
Finally the activity was over, I ran out to my car, got the kids in and drove out to Meridian to my parent's house where Eric and I sat down and told my parents, and grandparents, and my sister. Eric gave Preslie a blessing, my Dad gave me one, and my Grandpa Carpender gave Eric one. (Blessings are personal prayers on behalf of one person, quite often with promises and guidance given.)
Both Eric and I got the distinct feeling that things were going to be okay, we don't feel like it is Preslie's time to go. She will be okay. But we definitely feel like the next couple of months, maybe even years could be extrememly difficult for us, with the opportunity for huge growing experiences.
Thursday morning, Dr. Lanuza called, she said she had talked with Dr. Rand, and set up an appointment for Preslie to come in for her one year immunizations (that we are behind on because of how sick she keeps getting) and blood tests on May 20th. The date seemed like forever away, but they were hoping that the longer they waited, if on the slim chance it did end up being her sickness tearing up her blood cells, that she would be better by the time they took the blood test. She also said that she had a call in to the Hematology/Oncology clinic here in Boise and she would call me when she heard from them.
That afternoon, Dr. Lanuza called back. She told me she had just gotten off the phone with Dr Camilo, the Oncologist. Her exact words were, "He has reviewed the case and has decided to take over from here, he wants to talk with you guys and take blood work, he doesn't want me involved."
Well that kind of seemed to seal the deal. There's only one reason an oncologist gets involved, right?
So the Oncologist's office called on Monday. She said Dr. Camilo had reviewed all of Preslie's case notes, she said that the oncologists then triage the patients. If things look really bad, they ask that the patient be seen right away (that day), then it's within 1-2 weeks, or the first available appointment (which is usually two months out). She said that if it made us feel any better we were in the middle, so chances are it didn't mean things were too terrible.
That does make me feel better.
It's funny cause when we left Dr. Rand's office after the first diagnosis of an overactive autonomic nervous system, I still felt really uneasy. Things just didn't seem finalized to me, it just seemed like no one could explain what was going on, so they didn't try looking elsewhere. After the phone calls letting us know blood tests were looking like leukemia, even with as terrible of a diagnosis as that is, I was comfortable. It's not that I want her to deal with that, I would rather take that burden, but I know that childhood leukemia survival rates are up around 100% and that just seems to help in explaining what has been going on, why she is always sick, why she has so many problems.
Myelodysplasia can also mean severe anemia requiring frequent blood transfusions (I'm not sure what frequent means, I think that's a relative term), and several different stages of anemia that all seem to progress into leukemia. If this ends up being what the Oncologist diagnoses Preslie with, it appears almost positive that within the next two years, or earlier, she will end up needing a bone marrow or stem cell transplant. Fun and exciting times I tell you.
But through all of this, I am reminded that God is good, and he knows our lives, and he knows the outcomes of our lives before we even do. I'll share one of the quickest examples.
Eric and I were talking about seeing if we could get on Aflac's Cancer policy, just as a supplement to our insurance. I called our business's original rep who I can never get a hold of, then I started sending an email to his boss. I have never talked to this lady before on the phone, I have sent a couple emails back and forth, but I've never met her, don't know anything about her.
I decided to call her instead of sending the email. I called her Tuesday morning and said, "I was hoping to review the possibility of getting signed up under the maternity and cancer policies with you, do you have time to discuss them?"
And she said, "Funny story, I am sitting in the parking lot, right in front of your building. I felt like I needed to come in and talk with you guys."
And with situations like that, I know that everything will be okay. Even if that means leukemia, and chemo, and radiation for two years, and no hair, and bone marrow transplants, and excessive hospital bills, and stress beyond belief . . . . there is an end to that tunnel, and everything will be okay.
The One With Easter 2011
So Brittany and Jared bought this great house when they finally moved back down here. It has a great yard for family get togethers, and it's close to everyone else int eh family (except for us of course, but that's cause we live in the boonies) and so we had an Easter Egg Hunt for the kids at her house. LOTS of fun places to hide eggs and treats. It was awesome.
This is what Preslie looks like when she wakes up first thing in the morning. I think it's pretty hilarious, and I can't wait to show her future husband all these awesoem baby pictures we take!
Uncle Jordan helped Parker find all of his eggs.
Preslie mostly had fun learning how to drive.
These got out of order - all three little boys ready to head out and hunt for eggs!
Preslie HATES crawling on grass, it's pretty funny.
And here Preslie is al ready to go!
The One With The Zoo Trip While We Wait
So my sister Brittany is pretty rad. She always does fun stuff with her kids. I never do fun things. Ha. Okay maybe occasionally, but not as often. She has awesome year memberships EVERYWHERE - the zoo, discovery center, the YMCA, botanical gardens, etc - and I am a mooch, so usually I get to go along. I guess really you could just say that she is nice enough to invite us. Either way, it is awesome because me and the kids get out of the house and do fun things, and Parker loves it because he gets to spend the day with his two cousins, Jack and Bennett.
So April reached it's ridiculous weather - in everyway - hospital bills, sick kids, crazy medical problems and the WEATHER! What the heck is up with all this dang wind and torrential rain, and the snow? Seriously Mother Nature, where is Spring?
Brittany picked the first, and I'm pretty sure it was the only, nice day in all of April and we went to the zoo. It was fun to get out of the house with Parker and Preslie, and I wanted Preslie to have some fun things to be doing. I know I needed my mind off of life for a little bit.
We went and had a picnic at the park and then went into the zoo. My camera died about 1/4 of the way into the fun, and then of course when you have a bunch of kids in a picture it's almost impossible to get a good one of all of them. So there aren't a ton, but we had fun.
Doesn't Preslie look so excited? I love this pouty face she does. It is always SOOO easy to know how she is feeling about something.
Parker and Jack!
Preslie's face in this one is hilarious, that's the only reason why I put it up there.
So April reached it's ridiculous weather - in everyway - hospital bills, sick kids, crazy medical problems and the WEATHER! What the heck is up with all this dang wind and torrential rain, and the snow? Seriously Mother Nature, where is Spring?
Brittany picked the first, and I'm pretty sure it was the only, nice day in all of April and we went to the zoo. It was fun to get out of the house with Parker and Preslie, and I wanted Preslie to have some fun things to be doing. I know I needed my mind off of life for a little bit.
We went and had a picnic at the park and then went into the zoo. My camera died about 1/4 of the way into the fun, and then of course when you have a bunch of kids in a picture it's almost impossible to get a good one of all of them. So there aren't a ton, but we had fun.
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