Thursday, December 29, 2011

12/29/11 - A Rare Case (of good)

Clinic story to report - and praises are in order.  Josh and Adam went to clinic on Tuesday.  Adam had two chemo injections.  Not a big deal.  We see different doctors all the time.  There are several in oncology/hematology plus it is a teaching hospital so you will get the occasional doctor in their rotations. But this week they saw Dr. Gomez (who I haven't seen since our hospital stay - though Josh had seen him once since. Remember the poor cornered doctor from day 1?).  Gomez shared that he was surprised he hasn't heard anything about Adam - at all!  This is good news and rare because he hears about problems patients encounter.  For instance, if Adam had a bad reaction to a therapy, anesthesia, or any drug he is given.  Or if Adam had gotten sick especially the flu (which we are extremely susceptible with Adam's fluctuating immune system).  Gomez said it was extremely unusual that none of these things have happened and that Adam hadn't even spent a night at the hospital since his original visit.  Now, we wouldn't have had any way of knowing this (not like we have had anything to compare his progress to), so it was wonderful news!  As mentioned before, no news is truly good news! Praises for not only answer to our prayer of strength and healing for Adam but for the abundant answer of extra protection and grace!

And my God will meet all your needs according to his glorious riches in Christ Jesus ~ Phil 4:19

Saturday, December 24, 2011

12/24/11 Christmas Eve

Merry Christmas Eve!  The weekend we have all been waiting for!  Our plans are to lay low - do the family thing.  I am attempting my first turkey!  I have never had to cook one before - we do Thanksgiving dinner at Curt and Dottie's (grandma's side of the family) and Christmas dinner at my grandpa's house.  I am not sure what the four of us will do with a 7 lb turkey especially considering Adam hasn't been eating much, but we'll do our best.  Rachel is definitely growing and needs to fill her buddha belly so there is some hope.  Plus, this is the reason I have a second freezer in the garage!  Wish me luck!

This is how he normally poses for pictures anyway
Adam shows signs that he is reacting well to the new medicines.  He has wanted to play cars, ride his bike, go to the library, but these are only in small spurts.  We keep Adam cautiously busy. I think it helps him get better faster.  My favorite was the candy-covered pretzels we made yesterday using Christmas molds!  He is good for about four hours and then he crashes.  His favorite pose is face down on the "comfy chair" with his feet curled up on the armrest.  That's the sign he needs a nap!  Then he'll sleep for a couple hours and go again.  Bedtime has been about 11:30 and 7pm.  Usually I am excited when the kids want to go to bed early, but right now is not great timing.  But we could do Christmas movies and Christmas books and (go looking) at Christmas lights! Ok, fine I guess they can go to bed :) Only one more day of the Decadron pills and then we get a week off, so next week I am sure we will  have our hands full with stir-crazy toeheads.

I learned something yesterday.  I got a really great book that I know I am going to love from Roxanne and Troy for Christmas.  It is a Max Lucado trio in one.  I started with Come Thirsty, and as the title implies it talks about water.  This is something that spoke to me as a coach and as a woman in general, but especially in this moment of this week it spoke directly where I have been struggling spiritually.  You know why?  Because I dried up!  Our body needs water to swallow, temperature control, to fuel our organs, lubricate our limbs, help the blood travel, etc, and our soul needs water so our heart doesn't turn into a raisin.  Tis' the season, Jesus is our water - that's the gist of Ch.1.    Temper/moodiness, worry, guilt, fear, irritability, insecurity, I could go on... We need spiritual water to fuel our soul.  The story is told in John 7, but specifically, John 7:37-38 says: “If anyone thirsts, let him come to Me and drink. 38 He who believes in Me, as the Scripture has said, out of his heart will flow rivers of living water.” It's funny how you read these verses (especially a common one like this verse), and you think, yes, this is great, makes sense, check.  But then it comes around later at the perfect time when there is serious application needed.  I even have a cool acronym for you (thanks to Max, of course):  Think of Jesus as your WELL: his Work on the cross, the Energy of his spirit, his Lordship over your life, and his unfailing Love.  Neat, right?  Ok, cheesy math teacher, moving on... Not going to church and only having occasional time to work on the soul has caught up to me - it was an easy time to prey, but now I have this great book and found that my church has all the Sunday services via podcast online.  I'm going back to work (before I really have to go back to work that is)!  Loving God's timing today - He truly will never leave you  and meets you right where you are at!

Friday, December 23, 2011

12/22/11 PEG (in the ) Legs

Our second PEG was today.

What can I say?  It was competely awful.  Just like the first time (see 8/29/11).  If you want to see a easy going, go with the flow (not to mention slightly claustrophobic) 5 year old go berserk, get four people to hold him down so an intramuscular shot can be given in each thigh. I am pretty sure his screams echoed through the clinic.  It wasn't the pain as much as the holding him still part.  How scary would it be if you were 45 pounds and four grown adults were holding you at each limb? 

On to the bright side...  No more of those in our future.  In addition, there was no allergic reaction.  We had to stay at the clinic for two hours after the PEG to monitor Adam for any reaction to the injections.  The medical term is PEG L-asparaginase.  All cells in the blood need a chemical called asparagine to stay alive. Normal cells can make this chemical for themselves, while cancer cells cannot.  The asparaginase injection breaks down asparagine in Adam's body. Since the cancer cells cannot make more asparagine, they die. Basically, this is a crazy reproduction enzyme.  It is amazing the things going on in Adam's body and all we see is a normal kid.  He is slightly pale (more than usual, of course) and his eye lids are a little dark, but otherwise you wouldn't know that there are enzymes and chemicals going to work in his blood!

A common side effect of the PEG is an allergic reaction - swelling or hives.  This is something simple that kids would take Benedryl for.  That didn't happen. Nausea, Diarrhea, unusual bleeding or bruising, abdominal pain (from enlarged pancreas), dehydration, mouth sores, and/or skin and eye yellowing are all side effects that they look for after the PEG (and in the days to follow).  Adam was definitely fatigued yesterday (remedied by breaking out the old Nintendo and Duck Hunt!), but he did not have to deal with any of these side effects.  Praise God!  And so far this morning (since I am technically writing this on Fri), he looks good to go!

So, we have had a low key week.  Not a lot of energy and needing daily naps and early bedtime, but Adam is still plugging along.  We should hear about his blood counts today which will tell us how to plan for the Christmas Day festivities.  But there is no doubt, the kids will definitely have Christmas!  I should mention, they don't know how to read a calendar yet... Christmas could be in one day, three days, or in a week and they wouldn't know the difference :) 

I am starting to feel the stress settle down in myself as well.  The anticipation of this phase and this injection was just about the breaking point for me.  Luckily, I have had prayers to lift me up and I wrote God's promises in a book that I carry.  I think I'll save you from the dark places my brain was taking me the last few days, but I am feeling like celebrating today!  An idle mind is an opening for Satan to move in, he knows our weaknesses and uses it for prey. I have not been putting on my armor (Eph 6: 10-18) nor seeking refuge as I had before.  What I really needed was to count our blessings because it is really easy to only see the trials.  What Adam is going through is like the flu compared to some of the other kids we have met at clinic.  In addition, we are not alone - especially not Adam!  Some people have to travel miles and miles for access to good healthcare and they do not have family/friends nearby to help.  We have peace (that we will have everything we ever need), hope (in God's greater plan), and joy in life and health and that we get to celebrate Jesus this week!

Merry Christmas to you.  And may your holidays be filled with joy!!
(Adam at 7:30 this morning - ready to go. Where? We don't know, but he's ready!)

Monday, December 19, 2011

12/19/11 Clinic Day

Josh and I woke up on edge this morning. Adam's appointment to begin Phase 5, "Delayed Intensification" is this morning.  Adam is basically going back on the same schedule as his first month in treatment.  My way of handling the stress mimicked that of being 9 months pregnant and "nesting."  Christmas cards in the mail, check. Laundry sorted and started, check. Dishwasher unloaded and bills paid, check! All before 7 am. On the bright side, motivation for these things is usually tough, so I should feel some freedom for being done.  In addition, and worse, I was questioning all the things that have gotten me through the last four months... Peace?  Must have been naivety. Strength? Must have been adrenaline.  My crazy head taking over!  Since this time I know what we are going in for, the shock isn't there nor the urgency, and I don't want  Adam to do all this again (reminds of one of my favorite Danelle quotes from my MSSB days: "I don't want to be a pirate!").  And that trust in God's promises -- that just kicked in instantly on the morning after Adam was diagnosed, by the way -- was totally uncertain this morning!  You may have caught on to what I was doing through these mindless chores though - trying to get some control.  I have a hard time with this schedule and uncertainty of results (side effects-wise).  There is no, "ok, Mrs. Hendren, let's take a look at your calendar to schedule our next appointment."  Or, "first you can expect xyz is going to happen in 32.6 hours, and then..."  In fact, we don't even know when our next appointment is until we go this one nor whether Adam will be feeling sick, tired, nauseous, losing hair, irritable, or hungry.  Maintenance was nice while it lasted...  Not a good start to this particular day.

On the other hand, Adam is in great spirits.  He is full of energy!  Our clinic room had two rolling chairs, so he was trying to balance with one knee on each chair.  You might ask what mother would let her child balance on rolling chairs in a doctor's office because, yes, he did fall off and land on his be-hind, but this was better than jumping from the rolling chairs to the bed.  We also played Checkers and  D. Chronicles on the iPad and a new Angry Birds card game Adam got last night from Ezra at the kid's Christmas gift exchange (thanks Laurel - totally brilliant! Isn't everything a card game suddenly?). His new injections were Vincristine, Zofran, and Dexamethasone.  He also got a spinal LP after that.  Pretty intense appointment this time.  You know my complaint of the anesthesia routine.  It is even more unsettling this time since the drug they use is the same Michael Jackson used....  Ok, I'll stop there.  But it does look like milk if you were wondering...

We came home with a 2x per day decadron (steriod, again) pill.  It's not likely he will get puffy this time (but possible), and the eating habits should improve.  He is barely eating pizza right now - that is just unheard of!  Food Network should get its stock out of us once again :)  This time we do pills 7 days on and 7 days off.  After the first 28 days the meds change, but we'll let you know when we get there (I can only keep track of one stage at a time).  The dreaded 2nd, but final, PEG is this Thursday morning too.  Right now, Adam is feeling a little dizzy still and has a bit of nausea this time.  He is happily resting on the couch watching Diego.  Should be a quiet afternoon, but not sure what the next few days will look like.  I'll try to keep you posted.

Thursday, December 15, 2011

12/15/11 Santa Claus is Coming...

Jingle Bells and Santa Claus is Coming to Town have been our theme songs the last couple weeks.  It is so fun to see the kids excited for Christmas!  They are at perfect ages to know what is going on.  Plus, now that both Adam and Rachel can read, they know which presents are for who!  Josh and I have a couple's bible study that meets at our house every other week, and yesterday we did a white elephant gift exchange.  Unfortunately, when I pulled out one of our gifts, it looked like a mouse got to it!  More like a nosey child trying to peek.  Now, I don't know for sure, but I am guessing it was more likely Rachel than Adam, but I think I am going to have to be more careful with leaving young kids unsupervised around presents...

On Saturday I did some mass baking while Josh and Rachel went to pick out a Christmas tree.  Adam decided he would rather stay with me.  He said, "You know mommy, I need to help you make cookies because I'm going to be a chef someday." Lol.  Ok, I thought the Food Network and crazy cooking thing were just going to be a phase of chemo, but apparently not.  I love it!

Josh and I are both looking forward to our last day before Christmas break tomorrow!  And I think we are all finally over our colds and what-nots.  We both have two weeks off.  Praise God!  We take Adam in on Monday for his first appointment in this next phase.  Praying for some kind of miracle that he is not feeling sick and grumpy, but we gotta do what we gotta do, right?  Instead of making a paper Christmas countdown chain, I am thinking of making a Phase 5 countdown chain!  Feeling a little anxious as you might be able to tell.  Will keep you posted!

Sunday, December 4, 2011

11/24/11 - F.I.V.E.

So, it's been awhile.  But so nice to see you.  It is safe to assume that no news is good news, but I have some updates to share.

#1- Adam is five now!  We celebrated his birthday on the 24th, Thanksgiving day.  He is very excited to hold up is whole hand to show "how much" he is now.  I am amazed at the things he can do - his favorites being reading and riding a bike!  He is looking like a little boy now too.  When did that happen? 

#2- We celebrated this big birthday milestone and Thanksgiving at the happiest place on earth:  Disneyland!  There was quite a bit of anticipation leading up to it - can we go, can we not?  We didn't really ask for permission to go to Gilroy Gardens a couple months ago, but this seemed like a little more of a big deal (enter sarcasm). On the Thursday before we left, the doctor thought it was possible we could make the trip.  So, on Saturday, we told the kids... and left for a Family Life conference in Monterey. Lol.  Sunday night and Monday morning, I packed the bags while Josh and Adam went to clinic. Thankfully, the doctors confirmed (while maybe not their favorite idea) it was ok to go.  So we left that afternoon!  It was actually amazing timing.  A couple weeks ago we went in for his chemo, and we were told his counts were not high enough to administer one of the medicines.  This was kind of odd, but not totally unexpected. We just skip it this time so his immune system can recover, and take it next time.  That next appt. happened to be the 19th (Disney departure date).  It gave his body two weeks to recover, plus even though he got the chemo and LP the morning we left, it takes approx 5 days for it to affect him.  So, if he does get tired, it will be our way home on Friday.  Praise God!  While we were there, everything was great.  There was no stress, we walked circles around the park, Adam went on Buzz Lightyear 3x, and Rachel met every princess.  We may have been physically exhausted from the carrying of kids passed out/dead weight over our shoulders on the walk back to the bus every night :) But Disneyland through the eyes of kids is truly magical.  Especially at Christmastime.  And I am so thankful we were able to go.
#3 would be that Interim Maintenance is done.  It was nice while it lasted.  Treatment only ever 10 days, and pretty non-invasive at that.  Adam looks healthy, has high spirits, and has really been back to normal the last month or so.  Even better, we have two total weeks off!  On the 19th we start our next phase, Delayed Induction, which is very similar to the 1st month... all over again.  Not the best Christmas present, but at least Josh and I will be home from work.  And it's never too soon to pray for a smooth and easy recovery!

I can easily identify what I am thankful for this holiday season: #1 to be cancer free.  We are all sick with colds right now.  Coughing, sneezing, stuffy heads, but I am still praying that everyone we know is protected from cancer, and that a cure is found, and I will take the common cold any day over that.  #2 Family and friends. It truly "takes a village..." and #3 That we have hope.  Where else would we have hope if not for God?   There would be no peace, no hope, and life would be a day in, day out hamster wheel if we didn't have a savior to rely on, cast our troubles on, and soak in the promises of.  Life can be a rollercoaster, or it can be simple. I believe you choose your ride.  Happy December!