2nd Try for Round 3

Reposting from http://www.caringbridge.org/visit/danieljmiller/journal

2nd Try for Round 3 

Wow - I guess it's been awhile since I wrote here.  Things have been going pretty well.  Daniel is becoming more active, but it's been hard on him.  He has so little energy and stamina that his returning desire to run, jump, and play just wreaks havoc on his very out-of-shape little body.  While we continue to be stymied over his lack of growth in either height or weight for the past 3 years, we hope, trust, and PRAY that the lack of energy and stamina has more to do with 3 years of sedentary life-style ... because that means it's simple to fix.  It may not be EASY mind you - as enough exercise and diet to make a difference in your health are rarely considered "easy" - but the solution is simple.  As his desire and enthusiasm (and warm weather) return, it is my hope and plan to find more and more FUN ways to get some exercise - preferably for ALL of us, but especially Daniel.  We'll know soon enough whether his strength & endurance will return.

We remain worried - increasingly so - about his lack of height and weight gain, and I'm planning to begin pursuing this again as soon as I can find enough time to breathe again after my work schedule settles down.  We're in a crunch right now before a big delivery date and I barely get home in time to tuck Daniel into bed, get a bite to eat, and hit the sack myself these days - but I'm SOOO incredibly blessed to be enjoying my job again.  It's been a really long time since I can remember not hating getting up in the morning.  Thank you Lord for THAT blessing in the midst of this season of trials right now!

Tomorrow morning however, will be a different story.  It's hard to fathom that I am HOPEFUL tonight that we'll be admitted to the hospital tomorrow for more chemotherapy, but after last week's failure due to Daniel's low blood counts, we really want to get this stuff over-with.  Last week was the second time we were delayed due to blood counts being too low and nobody seems to be able to explain why this happens.  "Could be a virus" (though he has no other symptoms & feels fine), "could be allergies" (though he has none), "could be his body is responding to the chemotherapy" (though it's not supposed to).  Or (in my own thoughts) it could be God just setting His own timing for reasons known only to Him.  We try to "roll with the changes", but really, we'd all like this to be over as soon as possible.

So tomorrow, we'll head back to Riley, packed up for a few days' stay, and pray for the best.  We'd appreciate your prayers as well.  If things go as planned, we'll arrive around 10, get a blood test & a spinal tap procedure about 11 (usually more like 12), and then check into the 5th floor and start his 24hr infusion of Methotrexate around 6 or so.  He'll be confined to the Hem/Onc ward for the 24hrs while the infusion is going on, but after that, if he's feeling well, we can wander about the hospital.  Last time, Daniel and I had a laser-tag war in the main lobby and a few desolate hallways of Riley on Sunday afternoon.  Other than a few stares by doctors, nurses, and a cop passing by, we had a lot of fun. :) 

They'll check his blood again every 6hrs or so to see how the MTX level is falling as it is eliminated from his body.  Once it's below a specific level, we're free to check out.  The first time, it was Tuesday afternoon.  The second time, it was Monday morning.  We never know.

For our Prayer Warrior friends, here are our requests:
1. That everything in the hospital (procedures, etc.) would go well and without mistakes or "events".  Events are bad.
2. That the drug would do its job against any cancer cells that might still be lurking about and then be eliminated quickly with a minimum of damage to his body - especially long-term.
3. That we would all have a comfortable and "enjoyable" time ... especially regarding roommates and their parents / visitors.
4. That Daniel would continue quickly on the road to recovering his health, energy, strength, and stamina (and appetite)
5. That his growth would resume to normal as quickly as possible
6. That Andrea and I will find time to rediscover one another and our marriage in the near future,
7. For Andrea's health (this would fill another post or 10 by itself, but she has a long list of prayer needs herself as well!!)
8. That our Awesome, wonderful, gracious, loving God would be glorified and honored through all of this and through our lives.

A huge thanks to all our friends and family who have been following us through this ordeal - especially those who have helped us along the way in so many ways we've lost count - prayers, gifts, help at the house, moral support, or just thinking of us.  Thank you all.  We love you and may our gracious Lord return your blessings many-fold.

- Tim -

Weekends at the Hospital

(Mirroring our CaringBridge entry here: http://www.caringbridge.org/visit/danieljmiller/journal )

Weekends at the Hospital:

As I write this, Andrea and Daniel are off to the hospital again this morning for our next planned admission - the second of four for this phase of chemotherapy.  Though we're very grateful that the staff has agreed to shift these admissions to the weekend so that it's not so hard on us to stay the nights with Daniel, it doesn't make for a very enjoyable weekend for anyone.  Daniel was really dreading this again last night, but the good news is that there is no spinal tap this visit.  Finding that out made him a little happier.

I was rather surprised last night as I got out my copy of the chemotherapy protocol to which he's been assigned to see what was on the agenda for this weekend.  He actually got angry with me stating that he didn't want to see it, didn't want to be around it, and didn't think ANYBODY should have to "see their own chart".  I was dumbfounded.  It's such an opposite reaction to things like this than I had at his age when I underwent kidney surgery and had to go into the doctor twice a week for allergy shots in each arm growing up with fairly severe allergic asthma.  I wanted to learn about everything.  I had a collection of the hypodermic syringes (with needles broken off of course) - hundreds of them.  I even did a science fair project on how the kidney works.

But Daniel wants nothing to do with ANY of it and doesn't even want to have the subject discussed in his presence.  When we're not actually forced to be dealing with the subject, he wants it all as far from him as possible.  Clearly there's a LOT of psychological undertones here and most of this is a defense mechanism.  Some of it at least is unhealthy and I still look for opportunities to help him process through all that's happening.  I want to be sure he at least doesn't have false ideas or expectations about how things are going or his prognosis.  Worries and fears will kill us and we're not meant to carry such burdens even as adults.  Watching a 10 year old go through this - particularly one's own and only child - is soul wrenching.  On the positive side, he's been doing much better recently.  We've been looking for and finding more "fun" things to do and, with his counts improved, we've been able to have more visitors and get out more.  Last weekend, I took him to play LASER Tag - probably his new favorite activity - and that was a huge attitude boost for him.  He's been feeling & acting much more "back to normal" though he still doesn't get out of the house much.  This isn't so much because we won't let him as just the combination of schedules, weather, and limits to his own energy levels (not to mention Andrea's & mine).

I'm back at work today as I've been so much of the time this week, and last, and the one before that...  My team is up against some difficult deadlines and a LOT of people are stressed and putting in lots of hours.  I'm starting the day today with several hours of overtime already on my time card.  So in some ways, I'm actually looking forward to the hospital stays this weekend as I spend the evenings at least with Daniel.  It'll be the most I've seen of him all week.  I'm thankful that at least I'm enjoying the job.  That's an enormous blessing that I'm very thankful for in the midst of all this. 

PRAYER REQUESTS:
1. Please continue to pray for Daniel - he needs God's touch, reassurance, and comfort in his whole being - physical, mental, and spiritual. 
2. More & better family time for all of us, but especially Daniel, to bring more "FUN" into the equation to balance out the rest.
3. Better spiritual (and psychological & physical) leadership on my part so that I can help him process, recover, and build himself up in body, soul, & spirit
4. Along the same lines - that Daniel (and all of us) would be STRENGTHENED through these trials ... that they would accomplish God's purposes in our lives, working together for good both in us & through us to others.
5. Success and minimal (or NO) side-effects from the drugs or complications from all this
6. For Andrea and I as we struggle, seemingly more and more recently, with the stress, communication, and our own marriage through the midst of all this.
7. That God would be glorified in the midst of our family and by what others see / perceive in all this.  If God can use this as a witness or to help others in any way that brings glory to Himself, then all of it is worthwhile.

PS: Please also continue to pray for our friends the Kellers and their boy Joey.  Visit / join his CaringBridge site here; http://www.caringbridge.org/visit/joeykeller