Children's Seattle Appointment

Maggie is no doubt an Angel for Tommy!

AMEN! G R E A T news -- Dr. Conrad (Tommy's Dr who will perform his surgery at Children's) said "piece of cake!" when he looked at Tommy's foot. We were so relieved and a little doubting still after being told his foot might need to be amputated from some of those at Madigan. Based on Tommy's chemo treatment and the Dr's schedule, it looks like his surgery will be in the 3rd week of July. We don't care when it is, just glad to hear this Dr is comfortable to perform without seeing any major issues for Tommy.



Tommy will have lots of visitors and helpers in July. Daryl's sister will be here the week of the 4th, my sister will be here for the surgery, and Daryl's parents will be here for Tommy's birthday. Whew, glad that we have all this help!!



Thanks to all our devoted prayer warriors -- keep them coming please! We know we have thousands praying for Tommy and if we could find the words that would show our appreciation and affection to each and everyone of you we would. We know it's our faith, devotion and all your prayers with ours, that has given us such great news. The chemo treatments are so harsh and the side effects are so intense, it will be the same love and support you give him that helps him and us find the strength and courage to make it through them all.



Maggie is Tommy's BIGGEST fan! The love they have now is one that as parents we hope will continue to grow and stay strong as they grow older. As parents, we know it's our role to encourage that bond, and it's an awesome thing to see the two of them together. Maggie loves to mimic Tommy with what he says and does. The two have sword fights almost daily and then there's the time where they sit on the "boat" (our bed) or the "bunk" (Tommy's bed) and snuggle next to each other while watching TV together. He's all boy and she's all girl, when they are together, they pull the opposite out of each other -- that's a good thing! <><

We're Home

Tommy's first five day chemo treatment went fairly well. The chemo meds are different and not so harsh -- they say we should prepared to see him sick again when we go back for the two day treatment. We aren't sure we want to start the 2 day treatment in another week. It's a little hard on all of us coming and going all the time and need to have our family time too. We'll make up our minds by or before Friday regarding that.

Since coming home at 9 PM on Friday night, Tommy has only gotten sick once and has eaten so-so for us. Tonight he was telling me he didn't feel good and his tummy hurt.

It's about the 8th day after the last chemo treatment that ones blood cells are at their lowest. One of the things we do to help Tommy recover them as quickly as possible, is by giving him shots every day. Yesterday wasn't so bad to do, but today Daryl had to help. Our finger are crossed and our breath is held for next weekend. That's when we could end back in the hospital from this treatment like we did the last one. So please keep those prayers going.

Tuesday we go to Childrens in Seattle for our first appointment with the surgeon. We hope and pray to have good news. Meanwhile, we'll enjoy what's left our holiday weekend and may all of you do the same. <><

PS - posted several pictures below -- take a few minutes and enjoy!

Video Junkie Comes Alive

Looks like we better put a birthday order for an "X Box" -- Tommy's nearly a natural at video games even though we don't own them. He LOVED playing Super Mario.
Tommy is more often roaming halls and hanging out in the playroom when feeling up to it, that his IV battery often beeps for running low. Good thing there are outlets in the play room for him to plug in to.

Tommy's First Visitor

Auntie Grace comes to visit Tommy. Here they are in the play room. Tommy took Auntie Grace on a floor tour and we were even able to get Tommy an "off floor pass" so mom, Auntie and Tommy were able to go to the "chow hall" for lunch. Grace is our neighbor across the street from us and over the years, she, Craig and their family have become an extension of ours and we love them just as much.

FUN Pics - click on any to enlarge

At about 11 PM on Mother's Day we discovered Tommy is allergic to shrimp! His poor lips were like Angelina Jolie's -- they sure were kissable.
Tommy just two weeks ago -- his hair was freshly cut, now he hardly has any.
He's so happy here, love to see him like this.
Aunt Steph sent some BIG lip sucker -- good thing the shrimp didn't do this to him.
MY Maggie!

What a day!

What a day is right! Started off bright eyed and bushy tail at 0-dark thirty and for those who know me and my kids -- that's NOT us. We were woken up at 6:30 AM for vitals and that's when our day began. By 8:30 we were dressed and in mom's bed watching tv and having breakfast - pancakes. Tommy's learning that he's Mr. Popular - the women all love him and think he's cute and the guys all think he's funny and a prankster -- we're in trouble when he starts school is all I can say. So he wants to roam the halls, ride on his IV pole, play in the play room and hang out at the nurse's station. He was non-stop full of it today.

It was as if he had ants in his pants and a slap happy drunk mixer in him. I'm quickly learning the medical field and the more I can do for them, the less I have to hit the nurse's call button and have them in our room -- trust me! At a medical student hospital you have MORE than enough people checking on you -- some who know what they are doing and some that don't. So...I've learned if I catch Tommy's urine, measure it and pull a lab sample ("suck my pee" as Tommy says it) I can then walk across the hall to their station deposit his sample and tell them how much he went.

Tommy's a hands on type of guy, so he wants to "suck his pee" with me -- so being the best mom in the world that my son calls me, I of course let him be my assistant. We glove and mask up every time he goes to the bathroom (about every 1 1/2 hours A LOT) and do the routine together. So he's all happy and jumping to help and wham! He jumps on his scobby doo tail (IV line) and pulls it in to two sections. Thank goodnes NOT while in a chemo drip, so I pull the emergency pull on the bathroom wall knowing it was an emergency and EVERYONE in 4 North would be running. LOVELY! Just as I thought we had a room full of people to see Tommy bare butt and laughing cuz his tail is broken. The girls are like "oh he's so cute" and the guys are "he's so cool, I want a kid like him". Thankfully it was an easy fix!

Daryl and Maggie came to bring us dinner and visit -- while dad and Tommy were playing a game, Maggie runs right through his IV line and pulls his entire tail out of his port! OUCH! NOT a good time!!!!!!!!!! I had to stradle him and hold his arm down to actually get it off with the nurse and then had to help get a new one in -- she missed the first time so we had to go for a second -- not a fun or pretty time for my Tommy boy. He kept saying, "Maggie hurt my port". He was bawling cuz he wanted his tail back in and to spend the night again at the dr's house cuz he's had such a good day! What an amazing kid I have! Here he is on chemo, having a ball, in major pain, wants more pain just so we can spend the night again. We are doing everything right as parents and have a very special gift from God. I'm just taken by his courage!

Well, for those who are paying attention to my blog time (yes, mom -- you :) ) I better get to bed. <><

He won't part with the VTech computer he found in the play room -- guess what we'll be looking for this weekend.
His PJ's say "Danger Bad Attitude" but he never has one (uh, whouldn't on this chemo stuff!)
Kirstin, Fella and Jackie are Tommy's nurses today and they are giving him his first treatment of chemo for the day. It takes about one hour for it to run and then they start the second treatment which will also take an hour -- then we are done for the day. They give him about four differnt types of meds to help him from getting sick which will have him take a long nap.

Tommy has his window decorated with a poster size card from Aunt Suzanne's and all his friends at daycare

Quick Update

It's after midnight and I am just exhausted so this will be qucik. Tommy's doing awesome on this round of chemo. We've been able to manage it so he hasn't gotten sick, just a few tummy aches here and there and a few times of thinking he's going to get sick.

We will be back here again in a little over a week to do the two day treatment which is the one he got so terribly sick on. They hope (like we do) that maybe we can control the sickness on the next one, but they are already giving me pep talks to plan on it being a bad storm.

We got to Children's on the 29th to find out about his surgery. The rumors we hear now aren't very good so we'll tell you what we find out after that next appointment.

Daryl's doing a good job at taking care of my little Mama's girl. Tonight was the first time they didn't come up to see us -- I miss her so much.

Remember to click on any of the pictures you want to see larger and then back arrow back to the blog, don't close or you'll close the blog.

Nite nite. <>< kj

Treatment Going Great!

Dad comes for a quick hello - it makes Tommy happy
His hair is starting to really thin out, sure was sad to see all the little hairs in the tub after he got out. They seem to be falling out faster and faster - his pillow is covered and so is what ever shirt he and mom wears every day
Bath time - have to cover his port to keep it dry -- you can see his Scooby Tail (IV) it too took a bath right along with him

Dr.Lieu and Tommy - he's one several Dr's on our team
Tommy likes to use his IV cart as a skat board. Mom and the nurses and take him for fast spin rides in the hallways -- he loves that
Mommy & Tommy

Nurse Fay is one of my favorites and I'm one of hers

Here we are taking a rest in the fort

CLICK ON PICS TO ENLARGE

First day of our five night, six day treatment. Tommy was happy to get his usual room and was quick to run the nurse around for what he thought it always has -- "Nurse, where's my pillow" - the bed was made without one, so off she goes and while putting his pillow case on, "uh, Nurse, where's my tv" we check a tv out with dvd / vhs to watch our movies, so off she goes to get his tv. "Nurse, where's my mom's bed!" the roll out chair to bed was not in the room, so you guessed it -- off she goes. He had her running for over a half hour.
We request the same room and bed for him so it's a comfort thing -- he calls it his room. Here's a peek at what it's like. His bed is the "fort" has a little wall mounted tv with cable next to it, but it's the big tv on the stand that we watch with our movies. The blue chair pulls out to a bed -- it's so-so for comfort --- note mom brings her own pillow, a MUST!
His room has a painted turtle on the window he's big in to them these days. Another chair for mom and dad to lounge in, the nurses working computer.
All on his own right as I click to get his picture, he does this! He's such a jokester - bet he gets voted as class clown later in life. Gee, wonder where he gets it from?!?

Chemo Treatment Week

Well, here we are starting a five night, six day chemo treatment and not really sure what to expect for side effects. After seeing how sick Tommy got the first time, we (Dr's included) are a little curious and hoping for the best. His chemo started about 4 PM and this week he only gets two kinds of chemo back to back, and each of them only takes about an hour to administer. He had a little bit of lunch and did fairly better on his dinner -- we're still trying to catch up on the weight he lost from the first treatment. His hair has thinned to the point of seeing his scalp and the patches can already be seen. We believe after this dose he'll be bald and handsome! When we run our fingers through his hair, tons of little strands just fly off his pretty round head. So far this first run has weathered pretty well. His tummy has hurt, but we have a cocktail of four types of meds worked out that pretty much keeps him from getting sick. Will post a couple of other pictures taken from the last week -- found out my Tommy is allergic to shrimp! Thanks for the notes on the blog, the offer for help and prayers -- we so much appreciate them and you!<><

Back Home / Chemo Delayed One Week

Tommy came home Friday afteernoon and is having fun being with Maggie again. Tommy's chemo treatment will be delayed one week because he is still recovering from the first chemo treatment. Hopefully this week will be some what normal for us all. Thanks for all the comments on the blog and prayers.

Back in the Hospital

Getting some sleep thanks to Morphine.

One of the Doc's took Tommy for a ride.

Picking out a DVD to watch with Dad.

Dad had to take Tommy to the Hospital around 1:30 am Wednesday morning becasue his fever was to high and blood count to low. He hasn't been able to eat for days and is living on IV fluids. He aslo needed a red blood cell transfusion, along with antibiotics, pain meds, and nausea meds. Hopefully he will be able to go home on Friday, bad news is he is scheduled to come back on Monday for a 5 day chemo treatment with foot surgery at Childrens Hospital in Seattle in the near future. This is a creul treatment schedule to follow, I hate making him better only to make him sick again starting on Monday.

Blessed or Cursed

We don't know, are we blessed or cursed?!?!? We thought we had it all -- we are each others soul mates, we have the careers we've always wanted, we lived the newlywed life for nearly a decade before we had our first child, it was a son! Great, we now have our boy with the family jewels to carry on the name sake (this was really important to Daryl), and then we have a beautiful daughter -- the perfect family, one of each. We can offer our children a lifestyle of comfort and meet their wants and needs and offer them the opportunity to be raised in a loving Catholic home -- just like I was and that is important to me. Daryl and I come from two loving families with two different religion up bringings praying to the same God. Now we have our own foundation with our own family in our own home -- where's the picket fence? Funny, me a religious and catholic girl (heck, I went to a Catholic school for nearly half of my life, have taught CCD or RICA classes) am now mad and angry and Him. It hurts me to be mad at Him and tell Him so. As soon as I tell Him what I am feeling towards Him, I then beg and plead for His forgiveness. I feel like we were so blessed and had it all! Then it all changed on April 10. For the first time I think of cancer as the devils disease -- it's silent killer and it's a curse! I am SO mad that this has happened to my son! This was the year Daryl wanted to accept a position with Southwest, start planning for us to relocate "home" to Phoenix, AZ. No! It's like someone is telling him to stay with the military, stay in WA, stay away from family (ok, maybe that could be true, JUST KIDDING - come on, this is pretty heavy and I need to lighten it up a bit) but he really feels the curse and now it's cancer! Come on, what's next?!!!

We had this pretty well behaved child and now he's NOT the same boy we had in our house three weeks ago. Since all the tests and chemo started, Tommy has gotten so sassy and lippy -- and he'll have the biggest throw down tantrums. Tomorrow we go tho Tommy's first follow up since chemo, so check back again soon to read about he updates. Take care <><

First Chemo Reaction

Well, after talking to my best friend Kim in AZ she encouraged me to be honest on the last week and put here in the blog. She said this is a place for me to vent (which it is) and also where all of you learn of the process and what Tommy is really going through. Thanks for that pep talk Kim! I warn you now, this will be a LONG entry because it's all been bottled up for nearly a week now.

The pictures of Tommy here are within minutes and only a few hours of his first injection. From there it went down hill drastically! Tommy did get severely sick from the treatment -- his DR's were rather surprised as nobody thought it would hit him that hard. Truth be told, this is one of the healthiest kids -- only once in his life has he had antibiotics, so he's nearly all natural and then he get pumped with these toxic drugs -- oh it seems SO mean!

It was painful to hear him ask "Nurse, what are you doing?", "Nurse, I don't like that!" and Finlay to only a few words where he said "no more". He spent all night throwing up and when he was able to pass out afterwards, which is what he'd basically do, his little body was so stressed out that his vitals kept tripping the alarm on the unit that was monitoring him and the nurses kept coming in to check.

We got home Tuesday night and since then Tommy has thrown up every day. He's had very low energy -- often tells us he's "too tired and needs a break". He's been so tired at times he's cried to have us carry him upstairs because he's too tired to walk up them. In the last 24 hours he has had leg, arm and head pain. Some kids get really bad bone pain and Tommy is one of them. We called the DR yesterday about all of this and he said that the weekend should be good, but next week he'll slip back again as his white cells will fall again. We give him a shot every day to help build his system back up -- he HATES them to say the least. It takes us both to give them. Every night he has woken up and crawled in to our bed because he hurts and isn't feeling good. We've been as close as .04 on his temp to needing to be at the hospital again. It's been rough!

I was glad Daryl was at home with Maggie. First of all, this would of been overwhelming for Daryl -- although I cannot shield him forever and Tommy and I will need him there for the next treatment which is for FIVE days! YES! We spend the entire time in the hospital. I could not do this for five days without any rest -- you don't sleep when you child is this sick! You want to help and comfort him, and when he passes out you watch him till the next episode and meanwhile you have some reaching out to God, sometimes begging and pleading for help and other times you are mad as hell telling Him you're not happy with Him.

To be honest, we are going to need help from everyone who can offer some time from their schedules when we deal with five day treatments. Auntie Grace and Cocoa Craig (neighbors which have become our extended family over the last seven years) are taking three days off from work when we go for his five day treatment to help us with whatever we need.

For those afar and who have expressed interest in visiting, Daryl and I both agree we need you here to help on our five day treatments but please don't schedule a visit right before or afterwards -- it's just not what's going to support us. In fact, we both feel it will stress out to have guests here in what "down times" we get, and we can only have one guest at a time. The other restriction is that you must be healthy or we cannot have you in the house. Tommy is not allowed to be around anyone, not even if it's just a cold.

My sister wanted to be here for the 4th of July and was planning it before we knew of Tommy's cancer, but his five day treatment is the week after the 4th, so we've asked her to switch her vacation time. Grandparents want to be here for his 4th b-day (July 30), they too have been asked to come the week before to help for the five day treatment.

How is Maggie with all of this many of you ask. And we thank you for asking about Maggie, although Tommy is the one with cancer, Maggie too suffers from this horrible time! She's a smart 18 month old and is aware of EVERYTHING but understands none of it. She's having separation anxioty from her mommy -- I cannot leave more than three feet without her rushing for me. She has never been a challenge to put to bed, now we have to lay with her, rock her and she has to have my shirt. Even at daycare she won't take a nap because she notices Tommy isn't there with her. It's rough on her too!

We had what seemed to be the best offer from family, whom I love so dearly! Both sisters have offered to take Maggie for however long we wanted - the entire time of treatment or whatever! AND my sister's mother-in-law offered to babysit Maggie everyday for FREE while she watches our cousin Ella (she's only 6 months older and they look exactly alike). It seemed to be perfect, family would watch her, she'd be in a routine, free daycare, no wild shift or changes -- good, because Maggie hates changes and hates strangers -- doesn't like men at all talking to her. Although this is family, they are strangers because we never see them. But we were figuring I could take her down, she's got a close bond with my parents and knows them which would help. We thought maybe she'd live with them and Pam would babysit and the rest of the family could relief on weekends. We were almost feeling good with the idea, but as many of you know, I'm big in the mind world and wanted to be sure it was in the best interest of the KIDS to do this.

Part of our team of DR's includes our own physc DR who helps all of us. She specializes in children and after talking to her, what seemed like the best thing to do is the worst thing to do. Both children would possibly suffer life time effects of sending Maggie away -- that's all I needed to hear to realize NOPE it will NEVER happen! We'll just let people know we need them here to help. I will not allow this cancer to cause any more hurt than it has.

August, our daycare closes for the entire month. I've asked my parents to come up for the five day treatment and my friend Kim to come up. Anyone else who has time in August, we'd love to have you. I might see if Savanna is available and hire her for the month to help out. She's a wonderful young girl who has sat for us in the past and the kids adore her.

Many have wondered if I'll continue to work -- we know you wonder how could we possibly live our lifestyle so far from family and deal with all of this and work. Makes sense that you'd wonder, but life must be kept as normal as possible. Yes, I'm working and I am VERY busy with three active listings, two active buyers and a possible 4th listing on the horizon -- and the magazine I publish. I have become the Super High Tech Diva Mom, my office is FULLY remote now with all the gadgets to keep me running but still couldn't do it without my broker, the staff and ALL the agents in my office. They well support me and my clients and it's going very well. Daryl likes to look at homes too, so this has been good for him t00 - he's able to work with me and keep his mind busy too. In fact, Daryl, Tommy and I have been previewing homes the last couple of days and have had a fun time bonding and didn't have to think of cancer all day long.

We'll be at the Dr on Tuesday and Friday this week and we'll update you with any new updates. I'm not sure if I mentioned this or not, but we are going to go to Children's in Seattle for Tommy's surgery. We're very pleased with that and will be keeping our chemo treatment at MAMC which also makes us happy. Enjoy your weekend, family and life! <><