29 March, 2011

So far so good

We are enjoying a week of normalcy. No hospitals, clinics, or doctors. Hopefully no fevers as well, so it can stay that way till Monday.

28 March, 2011

Quiet Weekend

We were able to enjoy a quiet weekend at home.  It was rainy and soggy all weekend, but we were all home together and enjoyed every minute of it.  If the fevers stay away I will enjoy a normal week of just working, and coming home.  Such a simple thing feels like a luxury right now.  I am not looking forward to the four hospital admissions, which are now slated to begin on the 4th.  However if we can manage to stay home until then, we will have a chance to re-charge.

25 March, 2011

Home again

We've made it home, hopefully for a bit longer this time.

24 March, 2011

Hanging in there

The fevers have subsided. We are back to waiting for counts to rise.

22 March, 2011

Here we go again

101 degrees bought us another ticket to the big house.

In the thick of It

I suppose that this moment of realization is just another milestone.  Another step that those who have gone this way before know so well.  As the ever changing tides of challenges and difficulties ebb and flow from our life, we are constantly having to reevaluate what it is that we are up against.  I understand now that this road will consist of many different segments.  Some will repeat, their familiarity providing a bit of comfort in actually recognizing what to expect.  And many will be unique, providing new trials for which we must constantly adapt.  Currently, we find ourselves in the crux of a rather trying and testing segment.  We're doing fine, just getting a little battle scared and ruck weary.  I guess what I am trying to say is that we now feel like we truly grasp how tough this will be.

I want to take a minute and sincerely thank everyone for help that we have, or are receiving.  And contrary to how this will likely present, I don't intend for it to be the obligatory, flippant, politely expected "thanks".  Know that I am truly thankful to every single person who  has offered anything to my family.   I have tried to help people with anything that I could for most of my life.  I may not be the guy who's sending you a card on your birthday, but when your roof is leaking, your in trouble, or just need a hand, I take pride in being the first one there.  But I promise you if you haven't experienced it, its a whole different lesson being the recipient of help..especially when it truly does help.  In the beginning there is such an overwhelming outpouring of support, that you just don't know how to deal with it.  You aren't even sure whats going on and what you will need and your having to turn people away from helping.  And that's  an extremely important occurrence in my opinion.  As its during those first darkest times that we were just crushed and a little lost, that we needed uplifting at every turn.  Now we are a few months into this, and our needs of help continually evolve.  People have of course had to get back to normalcy in their lives.  In fact I feel terribly guilty every time we ask someone to babysit or do something, we are such a burden to be friends with.  Although people still care, they have their own problems and concerns to deal with. However, Somebody from the Oakwood  firehouse may want to run by the church, as far as I can tell that place must have burnt down.

I guess what I am struggling to effectively say is thanks for those who helped in the beginning, we couldn't have made it through the worst time of our lives without you.  You lifted us up, dusted us off, and got us on the road.  And thanks to those who are still helping, of which we know we can never do this without you.  Now that we are back on the road, you are providing the sustenance for us to continue.  Help now is in the form of "see a need, fill a need".  And I submit that help given in this truly utilitarian manner, when I know its not easy, convenient nor fashionable, truly humbles me the most.  And I sincerely appreciate every single sentiment or act more every day.  When its 3 am, and we need to go to the hospital, its a terrifying experience.  The fact that my wife can pick up the phone, and get a hold of someone to take the kids in the middle of the night is amazing.  I mean how do you ask someone to do that?  How do you wake a mother or family who already has a house full of work and responsibilities in the middle of the night and ask for help?  Well it has happened a few times, and I hope that I can someday fully convey my level of appreciation to those who have opened their hearts and doors to us in this way.

Last night was stressful.  It started out perfect enough.  We picked up the kids from their stay away while we were in the hospital, someone was kind enough to bring us by a welcome home dinner and we were relaxing in the cool evening. The first night with all of us back home from the hospital, we're just wanting a quiet evening at home and Robert's fever spikes.  Instant stress.  Kasie is giving Robert a bath, I'm packing a bag for the hospital, we're tense and snipping at each other for no reason...it was miserable.  It was like a switch was thrown.  Luckily we held of on the hospital trip a bit longer than we were supposed to, his temp cooled back down, and we got to spend a night at home.  We learned a few things from this experience, how to communicate with each other under stress and how to help each other with what we each need in these situations.  Also that in this period of treatment, every single night is subject to change.  Every trip to the hospital could be hours or days.  Hopefully when we get passed the required hospital admissions in a couple months, we will get a break from the uncertainty.  Its draining.

20 March, 2011

Going Home

They are going to let us go "for now". His counts are still very low, but show signs of improvement. We are being told to keep a bag packed as we must return at the first sign of fever.

18 March, 2011

Nothing new

Just hanging out and pushing meds. Some of the antibiotics seem to be giving him hives, so they are monitoring that as well.

17 March, 2011

Waiting it out

They are just pushing antibiotics and watching the fevers.  If the fevers stay down and his ANC would happen to rise as well, we could go home.  This is a very unlikely scenario, and we'll be more likely to spend the weekend at least.  As the results from cultures return tomorrow we may know a bit more, at least as far as to rule out some of the negative possibilities.  This is not an uncommon occurrence when these kid's bodies get pushed this far.  We just have to wait it out, watching for the rebound.

Fever

The fevers are back. We will probably not be going home this weekend. Hopefully culture results will not show evidence of anything viral.

Admitted

Robert is going to be admitted. His fever is subsiding, but his counts are too low to allow him to be released. More to follow.

Hospital Trip

A high fever sent us to Atlanta. I will update as soon as we know anything. We may be headed home in a few hours, or low numbers may just keep us here until Monday's scheduled treatment.

16 March, 2011

Hair Today...Gone Tomorrow

{ or } Samson and Deleriah...

Robert was starting to get upset and a bit embarrassed about losing his hair.   So after retuning from a work trip recently.  I joined ranks, he thinks its great.
Some people just have a head that looks good bald! 

Unfortunately the bumpy arctic white dome that we've uncovered prevents me from being counted among them.

15 March, 2011

A new phase

We were able to get outside and soak up a bit of sunshine this weekend.
We were happy to have a simple clinic visit come and go yesterday.  A welcome experience in contrast to last weeks dramatic episode.  However starting next week, we will begin a new phase of treatment.  This new phase will consist of four hospital admissions of 3 days each.  The reason behind the admission is that he will be given an extremely high dose of Methotrexate (chemo) that will require a couple days of close monitoring after.  These admissions SHOULD occur every other week.  The wrench in the planning works is that his beginning this treatment is blood count dependent.   So we will arrange for help with Ben and Allie, pack a bag and head to Atlanta Monday morning not really knowing if we will begin treatment, or be sent home to wait another week.  This presents a logistical nightmare when it comes to trying to schedule my work.  Right now I have built a schedule to fit in between each scheduled admission, but if we get delayed that will all have to change.

The silver lining is that after this phase maybe...just maybe things will ease up a bit.

08 March, 2011

Rough Day

Yesterday's clinic was a rough one.  It started off easy enough.  Here, Robert is making his mom a St. Patricks door hanger.  I mean, what would St. Pats be without door hangers, right?


We got through the preliminary bloodwork, had his port accessed, visited with the doctor, and moved to the transfusion area to kill about 8 hours while getting chemo and a blood transfusion.


 His platelets were getting low, but not low enough to normally justify a transfusion. However when the needle was removed from the port in his chest, Robert started to bleed quite heavily.  The nurse had only a few 1x1 gauze bandages and a bandaid, anticipating the usual drop or two of blood.  He soaked those in less than a second as I dashed to grab the only thing I could find which was a fistful of the same little bandages.  I held pressure with those while the nurse went to get some larger gauze to make a pressure bandage.  She built a pressure badage out of 4x4 gauze and tegaderm which I thought would do the job.  Within a minute the tegaderm was full of blood and leaking.  After trying a few first aid type quick-clot products, one of the nurses showed up with a bag of platelets from the blood bank.  They re-accessed the port, pumped in the platelets, and held a dressing on top.  It was as if a switch had been flipped, the blood stopped within minutes.  After about 30 minutes the platelet transfusion was done, and we gave them about a half an hour before again removing the catheter.  This time, only one drop of blood.    I got him cleaned up, changed his clothes, and headed for the ranch.  There has been no more trouble, and I expect none.  Fresh blood, and a new batch of platelets makes for a happy boy, and Dad.  I have had other people's blood on me several times, and I normally have no issue with it.  However seeing your childs' blood all over your hands and arms, and his chest and stomach is a different story.  He was absolutely terrified.  It didn't bother me to the point of not being able to help, it just mad me a bit emotional.  Which of course, I hid expertly.