Cousins Came A For A a Visit

Jack had a great day today, my sister came with two of her kids, and fantastic time was had by all. 

Jack's hair started to fall out this weekend, I'm hoping to have a pic for upload tomorrow. 

Tomorrow him and I are heading back to Omaha for a check up. 

I'm hoping we'll be ready for another round of chemo this weekend. 

Today I'm grateful for:

- my sister and her little ones,

- playing Nerf wars and Minecraft with the boys over the last few days,

- Jack not being bothered by losing his hair. He knows it's a good look. 

A Very Good Friday

Two good news today:

1. Jack's lab results came back very good. Good enough where he doesn't need to take his last two Neupogen shots! (These shots help boost his white blood count, which help fight diseases.)

2. Today, at a school assembly, he was awarded a Distinguished Coyote award. He wasn't there to receive it, but will be happy to wear it on Monday while Skyping. He also got a 100% on his spelling quiz. 

I'm hopeful his health will continue to keep up with the treatments, and that we'll be able to keep up with his academic needs. 

(This is his second Distinguished Coyote award, and I have to tell you he's pretty excited about receiving them.)

I may not have much to report over the weekend, he does have two wiggly teeth, but that may not be blog worthy. We plan on enjoying the weekend outside. 

Today, I'm very grateful for:

- good counts, and not needing the last two shots

- specialist's distinguished coyote award

- Jack's excitement over these two nice surprises

Doing Good

Jack was able to join his class today for almost two hours of reading and writing over Skype. 

He is continuing to eat and sleep well, and I'm hoping his white blood count will recover soon. 

I had a bit of a cough and a runny nose this morning, but it looks like it was allergy related. Jack has been rocking a steady 97.9 Fahrenheit and has been pretty bouncy and active in the past few days. His energy levels seem to be returning to normal. 

Today he took an excursion to ToysR'Us and Target. 

Lab tests tomorrow morning then hopefully more Skype, and then the weekend. 

Here he is while Skyping: (note the fancy iPad stand)

I'm grateful for:

- Jack's teacher for going the extra mile to make him a part of her class,

- Jack's excellent idea to have pancakes and eggs for dinner,

- Jesse Pinkman finally doing the right thing.

First Post-Chemo Blood Tests

Ok, first of all, no pics today, sorry. I forgot he wouldn't be able to Skype today, as him and I trucked to Omaha to do blood tests in the morning.

His white blood count is very low, so they scheduled us for another test on Friday morning to see what the white count does.  Hopefully it will bounce back up, or at least won't go much lower. It is not unexpected for it to be low, and for now all we can do is watch it and keep him germ and disease free.

His other blood counts (hemoglobin, I believe) are good, so he can at least heal wounds and finger pokes.
That will come in handy, as he has a loose tooth that should be coming out in the next few days.

He ate well today, and followed doctor's advice to graze all day, rather than plan on three full meals. It's harder to judge how much he eats that way, but we feel satisfied. He drank well too.

Tonight, he was worked up over the neupogen shot, as usual, but we did it quick and it wasn't too bad. Afterwards, we did some yoga poses that he learned at Dimensions preschool (http://www.dimensionsfoundation.org/) and that did wonders. Even lowered his temperature down a degree.

I love doing yoga with him, especially the candle pose. He seems so at peace when he does it, and shows us how to do it. Since I had his attention, we also did a bit of light weight lifting.

Sarah was able to go to work today, for the first time in a few weeks. I'm very happy for that, as she needs to be around adults too and focus on other things.

Today, I'm grateful for:
- Sarah being able to go to work and school
- Jack being so much fun to talk to. (His favorite underwater animal is an Orca, and his favorite bird is a Barn Owl. Octopusses and squids are freaky, and frankly I agree, though I admire their "tentacly" adaptations.)
- Our coworkers, friends and family, (again) who continue to be great support for us

Monday

Another good day today. 

Cocoa puffs for breakfast, McDonalds cheeseburger meal for lunch, and we'll see what's for dinner. But so far, so good. 

He attended a class via Skype today, which worked great, I should have some photos tomorrow. 

Today I'm grateful for:

- friends, coworkers and family,

- both of our cars working. (I do a lot of special "modifications" myself.)

- a good night of sleep. (Like three or four in a row..)

First Weekend At Home

It's our first weekend at home since chemo, and even before then, as we were in the hospital the weekend before that. 

It almost felt normal. We had company, boys did schoolwork, we even did some yard work. We took a motorcycle ride and a couple of walks, discussing various minecraft facts. 

Jack slept good, no fevers (Yay!), and he's drinking and eating OK. I'd like him to drink more, but we don't argue over it. 

He wanted to go to the store with Sarah, but we didn't want him to go and possibly get sick, so that bummed him out a bit. 

The shots are stil kind of a big deal for him, though I'm not sure if he's more scared of the ice used to numb up the spot, or the actual shot itself. Sarah gives them like a champ though. 

Tonight we're making ice cream and fruit smoothies (with some nutritional and tasty baby food thrown in for the taste), so we'll see how that goes. 

Nutella sandwitch cut into a fun shape with a cookie cutter was a success. Yesterday he had Mac and cheese with half and half, and ate that really good. 

Here are the boys, happy to do their homework on a Sunday morning: (even the chai latte is for him, he loves chai)

I'm grateful for:

- a great weekend

- Jack doing well

- beautiful weather

TGIF

It's been a busy week, but we should be able to relax a bit over the weekend. 

Jack didn't make it to school today. He was on his way out the door, when we got a call that there is a bit of a chickenpox issue at school. 

However, his teacher stopped by in the afternoon, gave us his workbooks and we set up Skype so he can participate during morning classes. 

The injections are not going well, he freaks himself out over it, and it turns out into an hourlong drama. 

Tomorrow we may try the old school method... Ice and jab. 

I'm grateful for:

- a nice walk we took around the block 

- he still doesn't have much abdominal pain

- it's Friday

Doing Good

So far, so good.

Not much to report. 

Jack ate OK today, and drank his juices. It's important for him to drink lots of fluids to stay hydrated and to keep working the chemo out of his system. (That's how I understood it anyway.)

We'll start giving him shots tonight to help boost his white blood count. (Neupogen injection.)

He's pretty spooked about it, but I think Sarah will give it pretty quick. 

If you hear any screaming tonight, that'll be him. 

Didn't make it to school, they had a nice relaxing day, but he did start working on homework, and we logged in his math and reading websites successfully. 

Interesting tidbit, he is to go on a high calorie diet... Fruit canned in heavy syrup, whole milk, ice cream, half and half, Nutella... We have some shopping to do. 

I'm grateful for:

- his good night of sleep

- no fevers yet (though he danced around 99 degrees a few times)

- his pain seems to be lessened from last week. That's a huge one, he's not doubled over in pain. (Maybe the chemo is starting to reduce the tumors?)

Waiting To Be Released

Ok, we're waiting to be released. 

It may take another hour or two, but we're coming home tonight. 

Today went well. He got some Benadryl and slept through the nausea. 

His platelet count (blood platelets) is coming back up, which is good. 

The white blood cell count is expected to drop in the next few days, which will make him more succeptible to getting sick. So we'll have to reduce visits and crowds then. 

But, for the next two days, doctors OKed him to go to school for half days. 

I'm grateful for:

- treatment going well so far

- getting to go home tonight

- a certain someone who ensured we won't have to cook dinner tonight

Should Be Coming Home Tomorrow

Should be coming home tomorrow

Day 4 of 5 of first chemo cycle is almost done. 

He's eating well, so that's good. Him and Sarah also went out for a walk in a fenced off area, and they enjoyed some fresh air. 

Jack has been running mild fevers, but at this time they're just monitoring it, his blood tests seem nominal. We'll see how that goes, as once he's home, we'll need to go to hospital for fevers, and his white blood cell counts are supposed to drop more about a week after chemo. 

Here's a little pic of him outside:

Let's see, I'm grateful for:

- getting to see him and Sarah today

- UNIX, because it makes my work so much easier

- two great day and night nurses that I had both yesterday and today

Getting in a routine, maybe

Well, I slept good last night, and I think Jack did. Not so sure about Sarah.
And when I say him and I slept good, I mean between the bathroom visits and linen changes. (They're pumping a lot of IV through him, and we don't make it to the bathroom every time... I think that's probably par for the course when it comes to chemo.)

He had a fever last night, which was worrisome, so they got him on antibiotics and took blood samples to test them. Usually the tests show within a couple of days if there is anything of significance there.

I was in Lincoln today, so Sarah had to take care of him all day.
He ate breakfast and lunch good, and did get nauseous later, but it seemed pretty nominal.

Sarah had visits with nutritionists and doctor aids, and got some good information and ideas for meals.
If he gets fevers at home, the protocol is to take him to St. Elizabeth's, and if needed, they'll drive or fly him to Omaha. Hopefully we don't need to do that very often.

Being away from him makes me feel pretty powerless, but I know that he is strong (stronger than me), so that gives me relief.
Plus I know that I have all of my coworkers behind me, and Jack's teachers and school staff, and Chase and his friends, and both of our families, and our FaceBook friends and that helps.

It seems that the best time to do these blogs is at night, after a whole day's worth of information, and that is when things slow down enough for a quick post. I suspect I won't be posting every day in the coming days/weeks, but as long as I keep learning new things about the process, I'll keep posting.

No photo today, but here is my list of gratefulness:
- My wife who is so strong and organized, and a great partner to handle any crisis,
- Chase who is so smart, he puts me to shame. Plus he swims faster than me... and he has fantastic hair.
- Jack, who is way tougher than his daddy. Seriously.. I faint when they stick a needle in me.

I miss that little guy.

Tons of Toys

The day started off long, lots of interruptions at night, the IV beeping when it needs a refill, lots of quick trips to the bathroom, all before 6 am. But we did all sleep in till about 8.

We put together his Legos and MicroRacers today, which kept us occupied. 

He didn't get a nap today, so is pretty exhausted. He ate dinner really good but then bonked his head on the IV pole, got upset and tossed it up. One step forward, two steps back. 

Nausea is tolerable, it hits him about five hours after chemo, but then goes away.

Hoping he'll get some rest tonight and tomorrow. 

Today I'm grateful for:

- the nutritionist suggesting mixing Carnation shake with milk and ice cream, which he really likes,

- Iron Man movies,

- the dinner that he ate, even though it came back up. 

Happy Birthday Jack

Chemotherapy started this morning, thankfully. 

He is looking a bit puffy, but otherwise no tiredness or nausea. Hopefully that trend continues. 

Another cycle of chemo tomorrow, and so on until Wednesday. 

We celebrated his 7th birthday today. It was a classy Spongebob themed affair, with who's-who of Spongebob connoisseurs. But the party only started when Mr. Froggy showed up. (Second one from the left, below.)

Pinky up, as we say when being fancy. 

Jack and Chase:

Today I'm grateful for:

- Caring teachers of Campbell elementary, and their little coyotes,

- great gifts that made Jack happy,

- that for now, he still feels good. 

The Plan

We're still waiting on chemo. It should be starting around 8 PM tonight. I'll have more details on that tomorrow, which is also his 7th birthday. 

We've spoken with doctors in more detail, here are some interesting tidbits, and a better understanding of the treatment plan. 

Jack's treatment is designed and overseen by Children's Oncology Group, a consortium of over 200 hospitals in US and Canada. They specialize in children's cancers so he really is in good hands. 

Rather than 8 months as I initially understood, the treatment should take 1-1.5 years. We'll take it step by step.  First step is two cycles of chemo, about three weeks apart. We spoke with his school a few days ago, but now that we have more details, we'll need to talk again. We should be able to get someone to visit him at home and continue his studies. 

Jack is participating in a study that will help doctors better diagnose and treat future patients with his type of cancer. There is no extra "experimentation" that he will undergo, but he may be subjected to a few extra scans to monitor his treatment and progress. If anyone is interested, I can write more about the study, just let me know in comments. 

Here he is taking the auditory test today, he passed with flying colors. Chemotherapy can cause permanent hearing loss, so today they got his baseline.

Today I'm grateful for:

- My sister who brought our little cousin to play with Jack, and decorated our hospital room,

- Marie Curie, for doing all she did. http://en.wikipedia.org/wiki/Marie_Curie

- Generosity of coworkers and friends who set up a donation fund to help with medical expenses

Chemo Starts Tomorrow

Today we got the word that doctors are ready to start chemo tomorrow, so we're checking back in tomorrow. Things are starting to move then. 

Jack had a full body scan today, to establish a baseline. This is a new type of a scan method which the doctors hope can help them better judge chemotherapy effectiveness. 

Chemo can have adverse effects on hearing, so a hearing test is scheduled for tomorrow, and then chemo treatment over the next five days. He may be released on Tuesday, or Wednesday for sure. 

Here he is watching Tom and Jerry while being scanned:

He was very still for the scan, so techs took advantage of it, and got a couple of very good scans. 

Today I'm grateful for:

- continued support from friends and coworkers

- that Jack has been eating and you know... pooping well

- access to advanced technology that helps us all live healthier lives

Diagnosis

So... About a week ago we took Jack to get a CT scan, to see what was causing his off and on stomachache. Preliminary findings indicated swollen lymph nodes and a couple of masses/tumors in his abdomen. 

His pediatrician forwarded us to Childrens' Hospital in Omaha right away for more thorough testing, as the scans were indicative of tumors, though he couldn't say for sure. Further analysis and biopsy confirmed cancer, and initial findings indicate that the cancer did not spread to his bone marrow. 

As of right now his treatment will last 8 months and consist of the following:

- five cycles of regular chemotherapy, which could start this weekend, and will be followed by a fairly intrusive surgery to remove any tumors not killed off by chemo.

- a second phase of more intensive chemotherapy, designed to destroy his bone marrow and hopefully any cancer making cells in it. This will then be followed by a bone marrow transplant, using his own blood stem cells. [Edit: ok, I now understand that this part is not designed to destroy the bone marrow, but rather that is a side-effect. They will then inject his blood stem cells back in, which will rebuild his marrow. The process is called "grafting" apparently. He will be hospitalized for at least a few weeks during this step. This will be very hard.]

Right now these are the best details we can provide regarding his treatment, and situation is always subject to change. 

Jack's big brother Chase has been a true champ, dealing with this situation (with his limited understanding of the complex issues) with true stoicism and care for his little satellite. (As soon as Jack was back from the hospital, Chase and a friend showered him with toys and gifts.)

Initial shock has worn off and our family has mobilized to prepare for the long road ahead. Though things are by no means normal in our daily and nightly routine, we are regaining ability to focus and accomplish various tasks at home. 

We have received wonderful support from our families, both of our coworkers, and friends. 

In those first few days of muddling through stress, fear, intense dread and love, your support offered us a meaningful ray of hope to hang on to.  I doubt we will ever be able to express how much your care meant to us while in the hospital. 

In the future months, I plan on taking you all up on your offers to help ;)

As difficult as the situation is, we remind ourselves of the things we can be grateful for:

- the black Porsche which lifted Jack's spirits while recovering from biopsy

- clean bone marrow

- visits and gifts from family and coworkers which showed us we have many people who care about us and Jack

- having someone take care of Chase on such short notice

- excellent medical facilities, technology and knowledge of our doctors

- and more, but I will save those for the next entries. 

More to follow...