Very blessed! and very stuffed...

Today we were totally spoiled by one of Jacob's classmates, Payton (with more then a little help from her Mom, DeAnna).

Jake has missed a week and a half of school now and Payton is one of the kids in his class that has been very concerned. Today they brought us a meal and bags of goodies to help us during this season of waiting. The chicken was so good and the Mac N Cheese was extraordinary. I thought Brian's plate was going to break under the mountainous serving he put on his plate! The boys are playing with the speed racer car even as I am typing this post.

Included amongst all the treats was this dessert cookie which sums up what we are all feeling right now...

Payton and DeAnna
Thank you so much for the meal and all of the wonderful goodies!

Postponed.....again

Today's treatment was postponed due to the lingering virus that Jake has in his system.
In meeting with the Dr., she felt there was still enough congestion in his lungs and sinuses that it was best to wait a little longer.

The next phase of treatment is most successful when it is done in a continuous window. The last thing we want to do is to start the treatment and then have the virus still be in his system and have it ramp back up again once his immune system is compromised. The risks at that point are much higher and the success rate of the treatment will be lessened. Because of this we have an appt. Monday afternoon with the Dr to take another look. We will call in the morning and give her the update on where Jake is compared to today. If she feels there is a good chance we can start, we will go into the clinic and have them run the CBC to make sure his blood counts agree with her assessment as well.

Here's praying for a quiet weekend and for some of Tanya's homemade chicken noodle soup!!!!!

A few of my favorite vacation shots

Anoka Aquatics Center

With Grandpa at the fair

The boys on the car ride up to the lake. The cavalier is so cozy!

Fishing of the dock on Leech Lake



Showing good form during the canoe races.

Winners of the canoe race enjoying their victory

Joshua enjoying his time on the lake. Jake taking full advantage of his swim day Battling on Rock Band First night of fishing. Nice Bass! Checking out the nights catch. Hi! Good Looking Cousins! My sweet Allissa Mae Brian catching some air off of the slide. Head first Dylan enjoying some down time Coolest Grandma Ever!!! Aunt Jenny goes flying Jacob and Cody fighting each other during pirate battles Jacob, Cole, Cody and Joshua End of the day - at the bonfire Logan wearing smores and dirt

New Game Plan

The good news is that both boys are feeling much better and moving on towards good health. The bad news is that I have tissue stuck in both nostrils as I type this update. I hate being sick!!!

Now that Jacob is feeling better we are rescheduled to start Delayed Intensification on Friday the 19th. During this phase we will be introducing a new chemotherapy agent so please pray that Jacob tolerates the medicines well with little side effects. On Monday he will be back at the office to receive a double shot of asparaginase - and while that sounds like a nice coffee break - it is really two large intramuscular injections. I tried to encourage Jacob that they do numb the legs with Emla to help out with the pain and he thought we should talk to Dr Odom about using Valium. What a weird little world we live in.

Check back for more updates.

waiting for whats next

I am starting to think that waiting is far more exhausting then doing. Anyone else ever feel that way?

I am basing this on the fact that I feel far more exhausted then I have for... (OK - not forever - which is what I was going to put) but for a long time.

• Wrung out
  
• drained
  
• stretched thin
  
• empty
• bushed
• depleted
• fatigued
• sleepy
• tuckered
• weary
• pooped

It must take a lot of energy to do nothing. (OK - again trying to stay truthful - not nothing. But, also, not a whole lot of something.)

I think the exhaustion is magnified by uncertainty. Jake's chemo has been delayed due to low numbers at his visit last Wednesday. It is kinda funny to have the blood work and numbers before the symptoms, but the soar throat, cough and massive amount of snot soon backed up the numbers. Joshua decided to join in making it a family adventure.


Sunday evening Jacob spiked a fever sending us to the ER for blood work and cultures and a chest film. Following IV antibiotics we were back home to the waiting game. Jacob is starting to feel better and we will check in with Dr Odom to find out when we can be back on track. We will try and keep you posted

Delaying Delayed Intensification

Jacob was to have started the next phase of chemotherapy today but we had a very minor (please read - minor - nothing to lose sleep over) bump in the road.

First, let me explain what this next phase looks like. Delayed Intensification is the last phase before reaching maintenance and will consist of two cycles of chemotherapy that will each last about a month. This will be a major assault on any remaining Leukemia cells that are in Jacob's body and as such will involve higher doses of a larger variety of chemotherapy agents, very similar to what we went through the first month with induction. Jake will have oral, intrathecal (spinal), IV push, IV fluid and intramuscular chemotherapy over the next two months. WOW! Just typing it is more then a little bit overwhelming.

Along with direct side effects from the chemo (the main ones we had before being moon face and weight gain from the steroids, possible hair loss, aches and pains in the muscles and nerves, and loss of energy) we will also see Jacob's immune system be severely compromised. Once we start the chemo load Jake's numbers will start to drop and somewhere around 2-3 weeks he will need to be home to help protect him from infection. It usually then takes another 2-3 weeks for his blood and body to rebound back to normal numbers which would be the end of the 1st cycle and we will then do that one more time. This means we will be in and out of school for the fall - we are so fortunate to have an amazing teacher for Jake and an entire school and staff that is supporting us.

So back to the bump in the road. When we got to the clinic - Jacob's CBC came back with an ANC of 610 which is too low to start the next phase of treatment. This is not related to the actual Leukemia. All other blood work shows that things are progressing really well. Dr Odom feels that it is due to his body fighting off illness / infection. With the chemo, any time his immune system is called upon it causes numbers to take a drastic dip. To compensate, we are delaying the start of the new treatment, suspending his current chemo meds to allow his body a chance to rebound and hoping to start back next week.

While we were unable to start the full regiment of treatment - Jacob did have doses of IV chemo in addition to a spinal tap. I did not realize that was on the agenda for the day so this was our worst tap to date. Valuim, which is a key ingredient to them going well was absent and the numbing cream was not as effective so Jacob felt the tap. My baby felt the spinal tap. And my wonderfully brave little boy, with the smallest voicing of ouch, simply held still with a tear going down his cheek so that the Dr could finish. Children rebound quickly and he was soon moving on to Doritos and Nintendo. My heart has not moved on so quickly and my tears were not limited to one. Today was one of the hard days.

To end on a happier note - here is my favorite video from vacation. It shows just one of the many areas that my son is becoming brave and courageous in. While we are not sure what illness Jake is fighting right now, after seeing this video - Dr Odom would not rule this out :)

I will try and get more vacation photo's up soon. Enjoy this for now.

Wii would like to say Thank You!!!

WOW! Life got a little crazy and all of a sudden I am two weeks behind on our updates. In a nut shell - we are all doing fabulous and are completely enjoying our Minnesota Vacation. I have some fun stories and pictures to share, hopefully soon, but first I have to tell you about a group of people who have left us awed and speechless.

We have some wonderful friends, Nicole and Raul, who are moving to Puerto Rico and a couple of weeks ago we planned a last hurrah for our families. At their swimming pool we had the opportunity to meet some families from the neighborhood. Even with our friends preparing for their move we were so happy that they had found such a wonderful community of people to live next to for the last two years. After the pool we headed to the house of one of the neighbors to do some backyard barbecuing and, again, Brian and I commented on house nice and friendly the neighbors were that we were meeting. Dinner was amazing - even fighting the gusting wind that tried hard to steal our plates of food and wrestled with our napkins - it was fun to enjoy our friends and get to know some new people.

At the end of dinner, Nicole came outside carrying a big gift bag, and said that they (our friends and their neighbors) had a gift to help Jacob and Joshua during the next weeks and months. Imagine my boys delight and our utter...shock? Awe? Amazement? As the boys opened the present to find a Wii Sport and the Wii Play packed inside.

I am not often speechless. But there are really no words (especially in the moment) to describe what we felt as people we have never met or spent time with took time, energy, caring & money from their own life and gifted it to my boys and our family.

So to our friends

• Raul, Nicole, Matthew and Michael

And their Amazing friends

• Tracy, Tamara & Gregory
• Chris & Emil
• Karen
• Adam & Jennifer
• Mike, Lori & Mikey

From the bottom of our hearts - Thank You for living a life that reaches out and shows caring and for the very generous gift.