Disappointment at the Hospital

Ugh...Lincoln's appointment at the hospital went exactly opposite of what I'd hoped for. 

Bummer Number 1.
To start the next phase of his treatment his ANC blood count has to be above 750.  Last Monday it was at 200.  The Thursday before that it was at 100.  So we thought it was on the rise and he'd be ready to go for today but it was back DOWN to 100!  Had it been above 750 he would have been admitted for the next 4/5 days and received some new drugs on his treatment plan.  Now we have to wait another week and hope he'll be ready to go next Monday.  That was the first bummer of the appointment. 

Bummer Number 2.
I thought once his started this phase he could plow through it regardless of his counts.  I found out today I was wrong.  This phase consists of 4 hospitalizations about 5 days each time, every other week.  Today I found out the hospitalizations are only every other week as long as his ANC is above 750 each time.  So now, judging from the past few months, he'll probably have delays between every treatment, and this phase will drag out into August. 

All of this is hugely annoying and disappointing in and of itself...but on top of that remember how we're supposed to be moving to North Carolina the last week of June?!  Remember how we really want to finish this phase here in Pittsburgh because this hospital is excellent?  Remember how I have a one year old I have to find babysitting for every time Lincoln's hospitalized and now I'm going to never know when that will be until the day of?  Remember how I'm flying to Utah twice in the next month for two weddings and have no way of planning coverage for Lincoln in the hospital while I'm gone until I'm already gone?  Remember how I'm a planner and like know what to expect? 

I am definitively frustrated, but at the same time I feel oddly calm about the whole thing.  I think I accepted a long time ago that there are only a few things I can control throughout this whole experience.  I can control how much I can love and comfort and be there for Lincoln.  I can control to an extent how clean my house is and how exposed Lincoln is to people and germs.  The rest I just have to turn over to God and have faith that everything will work out.  There are a few other things we should remember.  Remember how I've been blessed with a sister and sister in law who are willing to drive 4 hours to Pittsburgh to pick up Sawyer and take him for a week at the drop of a hat? Remember how I have local friends willing to take turns watching Sawyer all day with little notice?  Remember how I have parents and a mother in law who are planning on flying out to help us move and watch Sawyer and help me adjust to a new city and hospital?  Remember how Lincoln is in remission and most likely going to be just fine?  Remember how I have a Savior who loves me and knows all my pains and frustrations and a Heavenly Father who hears my prayers and has an eternal plan for me and my life?  Glad we remembered :)

Oh, And Happy Mother's Day.  Best.Job.On.Earth.

Disapointments at the Hospital

Ugh...Lincoln's appointment at the hospital went exactly opposite of what I'd hoped for. Bummer Number 1. To start the next phase of his treatment his ANC blood count has to be above 750. Last Monday it was at 200. The Thursday before that it was at 100. So we thought it was on the rise and he'd be ready to go for today but it was back DOWN to 100! Had it been above 750 he would have been admitted for the next 4/5 days and received some new drugs on his treatment plan. Now we have to wait another week and hope he'll be ready to go next Monday. That was the first bummer of the appointment. Bummer number 2. I thought once his started this phase he could plow through it regardless of his counts. I found out today I was wrong. This phase consists of 4 hospitalizations about 5 days each time, every other week. Today I found out the hospitalizations are only every other week as long as his ANC is above 750 each time. So now, judging from the past few months, he'll probably have delays between every treatment, and this phase will drag out into August. All of this is hugely annoying and disappointing in and of itself...but on top of that remember how we're supposed to be moving to North Carolina the last week of June?! Remember how we really want to get this phase over with in Pittsburgh because we love this hospital and our doctors? Remember how I have a one year old I have to find babysitting for every time Lincoln's hospitalized and now I'm going to never know when that will be until the day of? Remember how I'm flying to Utah twice in the next month for two weddings and have no way of planning coverage for Lincoln in the hospital while I'm gone until I'm already gone? Remember how I'm a planner and like know what to expect? I am definitively frustrated, but at the same time I feel oddly calm about the whole thing. I think I accepted a long time ago that there are only a few things I can control throughout this whole experience. I can control how much I can love and comfort and be there for Lincoln. I can control to an extent how clean my house is and exposed Lincoln is to people and germs. The rest I just have to turn over to God and have faith that everything will work out. There are a few other things we should remember. Remember how I've been blessed with a sister and sister in law who are willing to drive 4 hours to Pittsburgh to pick up Sawyer and take him for a week at the drop of a hat? Remember how I have local friends willing to take turns watching Sawyer all day with little notice? Remember how I have parents and a mother in law who are planning on flying out to help us move and watch Sawyer and help me adjust to a new city and hospital? Remember how Lincoln is in remission and most likely going to be just fine? Remember how I have a Savior who loves me and knows all my pains and frustrations and a Heavenly Father who hears my prayers and has an eternal plan for me and my life? Glad we remembered :) Oh, And Happy Mother's Day. Best.Job.On.Earth.

Consolidation Phase Over! Cause for celebration.

Lincoln is officially done with his second phase of treatment.  Yay!  We still have two more 50 plus day phases before maintenance and then 3 years of maintenance…but we’ll celebrate any milestones we can along the way.  The next phase includes four, five to six day hospital stays every other week, so we’re gearing up for that.  But this week we are just happy and grateful for the progress he’s made so far. 

Some pictures for your viewing pleasure.  First - at the zoo, second - being spidermans in the bounce house.  Love to all!

Awesomeness Everywhere

Some pretty awesome people are making some pretty awesome things happen in honor of and for Lincoln. Let me just tell you about a few.

Awesomeness #1

Vygor is a gym I teach aerobics and yoga classes at here in Pittsburgh. They are having a week long “I-inspire” event. It consists of multiple free seminars including Weight Management, Healthy Eating, Being your Best You, and Becoming Inspired Everyday …to name a few. The week also includes fitness classes and training sessions. I’m helping teach part of a special two hour long workout Friday night as part of the event. In return club members and community members are invited to make donations that will all be given to UPMC Children’s hospital Oncology department in honor of Lincoln. Pretty awesome huh?! Also Vygor is donating 10% of money earned from any purchased packages or Products sold this week to Children’s Hospital as well. My director emailed me yesterday that to tell me that four of the kids from the “kids Yoga” class at the gym had a bake sale for Lincoln/children's hospital and raised $300.00.

Awesomeness #2

On Saturday my church is putting on a Blood Drive to help replenish the Blood Bank in honor of Lincoln. A lot of work has been put into organizing and preparing for Saturday, and we already have more than 50 people signed up to donate. How great is that!! I’m going to try and take pics and post more on that post blood Drive. Here’s the flyer that’s been circulating our church and community. If you haven’t signed up yet and you’re in the area, it’s you only have a few days left!

Awesomeness #3

I’ve talked about the awesomeness that is Jack Demos and Surgicorps before, and I’ll talk about them again. Jack is a “retired” physician who travels the world on medical missions helping people who otherwise would have no help. When he’s not across the globe saving the world he likes to come to my group fitness classes. The more I learn about him and what he does the more impressed and inspired I become. Currently he’s in Bhutan. Before he left he asked if it’d be okay he I gave him a few pictures of Lincoln to take with him. Today I got the following pictures in an email from Jack. The first three are of Tiger's Nest, an extremely famous monastery located outside of Paro and visited by tons of Buddhists yearly. Absolutely spectacular.

These are Prayer flags hung by the monastery. Jack hung one for Lincoln.

These next three are inside the monastery with "His Holiness", a Buddhist monk that blesses who is revered in Bhutan. In the photos he's writing Linc's name on the back of his picture and promised to say appropriate prayers and blessings for his speedy recovery and return to a wonderful state of health. Jack is in the Black with the white scarf.

These two are Holy Children ages 11 and 14. They are recognized as special teachers from a past life. The older is destined to become the highest ranking Buddhist leader some day. They are praying for Lincoln too.

Although I’m not Buddhist and I don’t believe in the same things they do, I am so touched and grateful that they are thinking of and praying for him. I’m also so appreciative and moved by the kindness of Jack to ask these people to pray on my son’s behalf.

Awesomeness #4

Lets not forget my awesome in laws who raised over $3000.00 for childhood cancer research and shaved their heads. If you sometimes feel like there is a lack of good people in the world doing good things, I beg to differ. There are good people doing amazing, wonderful, Christ-like things everywhere. You just have to open your eyes and see them. Thank you to all you awesome people. Lincoln says thanks too.

Consolidation Phase Day 32 - Back on Track

Lincoln's ANC was over 1000 on Monday and he was able to receive treatment. I am so releaved to be making progress again. He's had chemo every day this week and done really well with it. I've had to wrap several small presents and bride/reward him with candy and gifts to get him to cooperate taking his pills and letting the home care nurse give him chemo, but it hasn't been too much of a battle this week. We shouldn't have any more delays for a month and then we could get set back again because his counts have to be up before he starts the next phase. But for now, I'm glad to be moving forward. :)

Consolidation Phase - Taking forever

The past two Mondays I've taken Lincoln to the hospital for chemo treatments and he hasn't been able to receive any because his ANC is too low. In other words, his immune system is too weak. So, he hasn't had chemo for almost three weeks now. The boy feels great! That's the good news. The bad news is that I'm getting used to him feeling good and it's making it harder to think about him going back to him feeling crappy. The past two Monday's I've gotten all geared up mentally to go in and start his Four day long home care chemo week and then we go home three hours later having done nothing but a blood draw. It's kind of exhausting and frustrating not making any progress. It's just making the whole thing that much more drawn out. Two Mondays ago his ANC was at 100. Last Monday it was at 300. It has to be above 750 to start the next rounds of chemo. (Normal is 2000 in case you were wondering). I'm going to be really disappointed if it's not high enough this week. And I'll start to get a little worried. Big gaps in treatment aren't a good thing.

Also, his hair started growing back! I guess three weeks off the drugs will do that. It's just peach fuzz and it's certain to fall out as soon as he's back on schedule with treatments, but it sure is fun to rub my cheeks on it for the time being :)

Happy Easter! Egg Dyeing Fun