16 December, 2011

One Year

Today marks the first Anniversary of what I hope will have been the worst day of my life.  Its 7:00, exactly this time last year I was just meeting  Kasie and Robert at the hospital.  I got the call from Kasie an hour earlier saying that the Pediatrician thought Robert may have Leukemia, and we should go to Children’s immediately.  The call was crushing, I just couldn’t believe it.   I was already in Decatur, so I went to the hospital to wait for my wife and son.  The near hour I spent waiting, writhing in anxiety, I tried to grasp what was going on.  I had been searching my mind for what I thought I knew about Leukemia.  "I know it’s a blood disorder...but c'mon it’s not REALLY the C word”. 
In a truly vein attempt to prepare myself for the experience, maybe to afford myself a chance to pompously posture as the infallible, unshakable rock on which the foundation of my family rests…I figured I needed to get ahead of this Leukemia business.  Surely I pictured myself in some         Rockwell-esque scene, standing behind my "overly concerned" wife, rubbing her shoulders and assuring her... "there, there, honey...don't you worry, everything is just fine". 

I began to gather information from which to build my platform of victory.   After just a few minutes of searching Google, I felt as if my entire body was instantly engulfed in flames.  My eyes welled and as if I was drop kicked to the chest I unwittingly collapsed in a waiting room chair with the air seemingly too thick to breath.  "It’s Cancer...Its blood cancer you damned idiot." 

I sat there staring at the floor for a while, oblivious to my surroundings.  After about 30 minutes I finally became aware of the bustling room around me.  I realized that there was absolutely nothing I could do to prepare myself, or protect my family from whatever lay ahead of us that night.  I found a quiet spot, folded my hands and prayed.  I found myself unable to give truly humble, thoughtful prayer.  Instead it was a desperate, shallow, mind racing, negotiating sort.  Similar to my prayers from years before as a child, in a desperate attempt to ferry a favorable outcome in an important situation like sports or grades… I was wheeling and dealing.  "Please don't let Robert have Cancer...I'll do this...I won't do this....I'll do that...etc".  I had to calm down and figure out what to do.  And all I could come up with was to relax and try to be there to make the best decisions I could for my boy.

 A few minutes later Kasie and Robert arrived.  She was holding the hand of a pale, tired, sick and bruised looking little boy who smiled when he saw me. I had never been so relieved to see my wife.  I immediately realized that with my best friend at my side we would figure this out the best that we could.  We handed our son over to the doctors and a few hours later, around midnight, a good man had the terrible job of telling us our son definitely had cancer.  Now it was Dec 17th, a new day and a new reality.  It was the most challenging year of our lives.  I immersed myself into all things cancer.  My wife struggled between being with her sick son at the hospital, and being with her other two children.  It’s unimaginable the strain and guilt she had to deal with in that situation.  We became “cancer parents”, as if we were filling a mold that had been predetermined to be ours.  We met others who had gone this way before.  Once we wrangled our emotions, we settled in to the routine and overwhelming logistics of the challenge.  Once we were confident that our son was going to survive, and this is something that we just needed to get through, it got a bit easier.  Home became some exotic resort, and the ever present goal.

What a difference a year makes!  As if acting upon a cue to make me shift gears, Robert and Ben are downstairs yelling and carrying on.  We of course still have spinal taps and IV chemo every month at the hospital, and oral chemo every day at home, but Robert doesn't have time to dwell on that.  There are some episodes of getting sick, sore bones, and the like but he trudges through it all.  We have one week a month of the Steroid monster, but it subsides as quick as it arrives.  Robert has been busy with school, missing very little, and he and Ben are all amped up for Christmas.  We spent last Christmas in a hospital room so I assure you we are reveling in every moment this year.

2 more years or so of chemo, then all we have to do is pray that it never comes back.  We'll have a few fevers and hospitals trips in there for sure, but hopefully things will pretty much stick to plan, we can drive on and keep moving forward.  We have just received a report confirming that Robert is having a few cognitive effects from all of the chemo.  Some days it’s hard to remember the toxic cocktail that is coursing through his veins, but it’s there.  You sometimes hear breast cancer survivors talk about something they call chemo fog.  It can be hard to concentrate or get your mind to go the direction you want it to.    The docs do not think that it’s anything permanent, in fact he is above average with math and science, which shows other good cog. function.  However his writing is worse than it was when he left Kindergarten, and he is slower at reading than his classmates.  That's where the concentration issues come in.  Fortunately between the hospital’s experienced education staff, and the caring folks at Roberts school, a plan is being developed to get him back on pace as these effects hopefully diminish during his 2nd grade year.

The exciting thing is that we are enjoying life again, dare I say  in some ways even more than previously.  Being Christmas time, let’s make an obligatory gift analogy. I know I've already made this point, but it's worth repeating.   Along with all of the terrible, dark things that accompany a child having cancer, comes an amazing gift.  That gift is perspective.  Having the right perspective on life is truly liberating. We have a clear vision of what’s important in life.  What’s worth worrying about, and what’s not.  I am often amazed when I think about the things I was worried about before all of this.

I can’t say enough about how lucky I am to have married my best friend.  We've notice others at the hospital who are not as fortunate.  Neither one of us could have made it through this year without the other.  I feel that it was no coincidence that when one of us was having a weak moment, the other was strong.  And together we made our way through what we pray is the worst of it.  My wife is truly amazing, and the best person I know.

I asked my wife out 6 times before she finally said yes.  This shows that her instincts are good but her decision making may be a bit questionable!  All kidding aside, our family is on the mend because of the amazing relationship I have with my wife.  Thank you Kasie, for being you.

I will spend the rest of my life trying to deserve you, all the while knowing that I never could.

05 November, 2011

5 November

Since last month Roberts counts seem to have leveled out. He has had to miss very little school, and we've enjoyed a fairly normal fall. He seems to have been getting ill a little more this round, but it doesn't seem to bother him much. Kind of an eerie/ nostalgic feeling as we remember doing the same fall activities last year, right before everything changed in our life. However this usually tapers to a sense of relief, of how much better life has been the past few months.

Robert returns to chemo clinic in two weeks. He gets it in pill form every day at home, but the heavy doses continue to be administered at the Hospital.

The motor gave out on Kasie's van. Although a struggle, it's almost humorous. As the first non- medical "crises" we've had in a while, we just find ourselves completely disinterested in being overly bothered by it. We're now blessed with an almost flippant perspective and brush it off as a comparatively simple life obstacle.

Robert's hair has grown back, which thankfully means mine has as well. The general public can now be spared from my bald, lumpy head. As boys do, he has now become friends with the boy who teased him, calling him baldy earlier this year.

Life is challenging but good,
Drive on (except you Kasie)

01 October, 2011

Slow count recovery

Robert's counts have been slow to recover, so the doctor has ordered TPMT Genotype testing.  TPMT stands for Thiopurine Methyltransferase.  The test measures TPMT gene related enzyme activity in the red blood cells.  If a person has too low of TPMT activity, they can develop more severe side effects to Thiopurine drugs, such as sever drops in blood counts.  Thiopurine drugs include many antimetabolites used in Leukemia, crohns, arthritis, and organ transplant patients.  The Mercaptopurine that Robert has been taking over the last year is one of these drugs.  The thought is that Robert may have low TPMT activity, and the recent daily doses of mercaptopurine along with the cumulative amounts from the year previous are keeping his counts low.  It may not have been an issue before now due to the regular amounts of blood transfusions he has received, likely with blood with out the TPMT gene deficiency.  Now that he he is living off of only blood produced in his own body, the condition may finally be coming to fruition.


What does this all mean?  From what I understand, if the tests confirm the above condition, all that has to be done is switching to a non Thiopurine chemotherapy for the remainder of his maintenance.  All this has caused is some extension of the period of somewhat compromised immunity that he is in currently, as well as just making it take longer to get him "dialed in" to the specific therapies he'll use during the next three years.  Once they sort this all out and get him paired to the best therapies for his body, we will resume chemo.

Robert is feeling fairly well, aside from the side effects he is having from the week long round of steroids he is currently taking.  But to be honest, the rest of us suffer those side effects more that he does.  They turn kids into little over emotional eating machines in an instant.  I'm thankful that hes almost done with this dose.  He is enjoying being back in school, and really cares about his friends.  There is one new boy who is giving him a hard time and calling him "baldy" which is really hurting his feelings.  I'm trying to teach him to deal with it properly, but it seams to be escalating.  Its just a part of life, and he will learn a lot from it.  I fear he's too young for the punch a bully square in the nose program, so I'm taking the "take the high road" position.  We'll see how it shakes out, there's no doubt it will help make him even stronger.

26 September, 2011

Back To Clinic

Things have been going fairly well here in the Hart household.  Robert has been feeling more and more like himself, and has been able to stay in school.  His counts were getting a bit low, so it was decided to forgo chemotherapy for a few weeks.  The general idea is to keep his blood counts in a specific range, not too low or high, for the remaining three years.  We returned to clinic today where they drew bloodwork to determine how to modify the therapy.   He was given vincristine today, but aside from that will likely have a break from chemo for at least a few weeks.

He was able to celebrate his 7th birthday on the 14th, and we enjoyed a day of bowling.  It feels good to be able to go out in public, and to allow him to be with other kids.  He is having a few cumulative side effects from the vast amounts of chemo that  he has received.  A bit of motor skill trouble with his hands shaking a bit and the like.  These are not uncommon obstacles, of which a plan is being developed to overcome.

Before clinic today, we participated in a program at the hospital involving the Hyundai Hope on Wheels Program.  Hyundai has raised over 7 million dollars for childhood cancer and today granted CHOA 100,000 for a clinical study of a new drug that will aid in conquering the recurrence of Pediatric Leukemia.  This being my greatest fear, the cause struck home.  I gave a short speech, as well did the physician heading up the program, and a representative from Hyundai.  A few of the kids painted their hands and pushed them onto a canvas emulating the programs logo.  The boys were on the news, but as of the first run they only filmed their hands doing the painting.  A shame, as they were excited to see themselves on tv, maybe the late news will show them more.

All in all, we're hanging in.  Maintenance has so far provide us a bit of a reprieve.  As long as the fevers stay away and we can get his chemo dialed in to raise his counts some, we'll stay in the passing lane.

09 September, 2011

9-9

Robert has been hanging in there. School makes him extremely tired, but he has stuck it out. He comes home and takes a nap almost every day. He has been having some problems with fairly severe leg and knee pain which were hoping is just from the increased activity. On Monday we will take him to the local pediatrician to get his blood counts checked, and we are scheduled to go back to clinic in 2 weeks. The home chemo hasn't been too disruptive so far, but the scattered 5 day bouts with the steroids are miserable as ever. So far long term maint has brought an overall improvement in our quality of life.


-Bob Hart

30 August, 2011

Kasie with Allie, Robert and Ben (and two other kids) with the Governor and First Lady of Ga. 

A Milestone

     Since returning from our 16 day admission, we've managed to stay home.  We were rather surprised when Robert's counts were too low for chemo last Monday.  They finally started to creep up this week, so we were able to proceed with our scheduled clinic visit yesterday.  However, this wasn't just the average clinic trip, this was the official start of long term maintenance. What does this mean?  The primary difference is that most of his chemo over the next 3 years  will be in a much lighter dose, and will be given in pill form from home.  We should only have to go to clinic one a month!  In between clinics, we will stop by our local pediatrician's office for a counts check.  Once a month...that's hard to even imagine.

   In the bigger picture, this means that his immunity will be able to stay higher longer, which means a more normal life.  We will certainly still have our spells.  When he gets a virus, his counts will drop and he'll be down for the count for a while.  If hes sick from his clinic visits, he may need to miss a day or two.  But nonetheless, this is a new beginning for us.  To celebrate we went out to dinner, the first time that we were all able to go out to dinner in 9 months.  Chemo still stinks, but tempered with bouts of normalcy, it just may be a bit more tolerable.

21 August, 2011

So far so good

Since returning from the hospital, things seem to have been going well with Robert.  He has seemed to grow stronger everyday, and we are anxious to see his counts in clinic tomorrow.

14 August, 2011

Finally

We are home.


-Bob Hart

Just got the news

We are scheduled to be released late this afternoon. Robert's counts are still very low, but are definitely trending up with monocytes doubling twice in the last two days.

We should be home for dinner.


-Bob Hart

13 August, 2011

A fortnight of stalemate

Day 15 finds us still at the hospital. Thursday's blood transfusion brought a dip is some of Friday's counts and a false rise in others. Today (Sat) showed a slight increase. There is talk of releasing us tomorrow since we have maxed out this cycle of antibiotics. I've about had my fill of speculation, we'll just wait and see.

11 August, 2011

Thursday

Today is day 13 in the hospital.  Roberts counts have been fluctuating but really haven't made any significant gains.  His Hemoglobin was getting low, so he is getting blood transfusions today.  There are a few monocytes on his labs which are often a precursor to an increase.  Maybe that along with some new blood will get things going.

09 August, 2011

Tuesday

Day 11 is here and Robert's counts have dropped again.

We are making the best of it and having as good a time as possible. I expect to be here a few more days.

07 August, 2011

Still here

Tomorrow will be day 9 at the hospital. Robert's counts Started to climb a bit, but have fallen again. As soon as he is consistently trending upwards we will leave. This last treatment phase (delayed intensification II) has been a rough one. His little body is just feeling the cumulative effects of the past couple months, and has bottomed out. He is happy, having fun most of the time and there are no signs of fevers.

Greener pastures are in sight, they're just hard to see from this hospital window.


-Bob Hart

04 August, 2011

Just waiting

Robert is feeling much better, and is up and around. The photo below was taken in the hospital garden.

As soon as his counts start to recover we will be released. Hopefully this weekend.

02 August, 2011

Waiting

Robert is still in the hospital, waiting for his counts to rise before he can be released. He has two blood transfusions over the weekend and will likely get a platelet transfusion today. He's tired but content and making the best of the situation.

31 July, 2011

Update

We are now in the final phase before the much anticipated long term maintenance, and it's a rough one.  We saw the return of the painful ARA-C (chemo) shots at home, the final one completed 2 days ago.  All of the increased therapies in this phase have take a toll on Robert's system, his ANC was 0 on Monday. We were able to make it a few days at home but are now back in the hospital with fevers.  Once this admission ends, we should be able to get back on track towards moving on to the next step. 

School will be starting in a couple weeks, and with this development I think that Robert will start a little late.  But once he gets going, he should be able to enjoy a fairly "normal" year.

11 July, 2011

Relaxing Weekend

We were able to enjoy a relaxing weekend.  Low counts and a tired boy kept us at home, but we made the best of it.  Low grade fevers persistently threatened, but stayed below the threshold.

09 July, 2011

Ferrum Friends?

I’ve previously mentioned the new perspective on just about everything this situation has given me.  My views on friendship have not been excluded from this.

Clearly in an effort to signify its value, friendship is commonly made akin to gold and valuable items.  “make new friends but keep the old, one is silver the other is gold” for example.  Though the premise is laudable, I just don’t see it that way. 

Surely old friends are a valuable asset to anyone’s life.  But there have been people that I have only newly met, who have gone above and beyond for my family.  The way I now see it, a friendship is better defined by its actions than by its age alone.  Many friendships are formed from convenience, gilded and polished on the surface, but without true structure underneath. You may have a friendship that to all appearances and senses is perfect, but collapses under the weight of reality when truly tried. That being said, I do not need, nor am I capable of being the perfect friend.  I won’t remember your birthday or anniversary, nor will I try.  However, when you need a confidante, partner in crime, or strong back, I’m there.  New or old, I am of the opinion that the strongest friendships come from those who have labored together through difficult times. 

Forget gold. Those friendships forged in the fires of adversity yield steel and iron, something from which a true support structure can be built.

To my friends of iron and steel who have done so much to support us, I appreciate you.   I offer the same to you in return always, just don’t mind the rust.

07 July, 2011

Hanging In

We had a break from chemo this week, but not from side effects.  Robert has been having some pretty severe pain in his legs, which  is caused from the vincristine.  He is also dealing with the results of being back on steroids.  He has swollen back up to about twice his normal size, and he has sever mood swings.  He switches between complete anger and frustration, extreme emotion professions of love and affection, and generally pleasant form laden with about 100 words a minute of non stop talking. 

We've managed to avoid the emergency room for a couple weeks which definitely eases the stress.  Lately Robert's ANC has been extremely low, so if we have to go back we will likely have to stay for a few days.

Another month of this current stage, and then we begin long term maintenance.  Chemo will be a part of his life for at least another 3 years, but from what I understand maintenance will allow a more normal life.  Treatments will initially lessen to once every 2 weeks, then eventually only once a month. Of course there will still be issues in between, but what a difference.    It is expected that Robert will be able to start and attend school more normally this year.  He will have to miss clinic days, and any days with low ANC, but he should be able to regularly attend and enjoy being with his friends. 

26 June, 2011

ER Trip

We spent last night in the ER due to a very high fever.  Luckily his counts were just high enough to allow us to be sent home after a few hours of treatment.  He seems to be better today, and we return to clinic tomorrow.

19 June, 2011

Mobile Site

For those of you who have previously viewed the blog from your PDA, it is now available in a mobile format.  It should now be a lot easier to view on a phone.

19 June

Things went well this week, and we've enjoyed a nice weekend.  Robert has started back on the steroids (Dexamethasone), and we are already starting to see the side effects.  This time he is taking it in rotations, a week on, then a week without.  Though he's already started to swell and has the temperament of a constipated badger, we're hoping the alternating weeks will lessen the severity. 

We return to clinic tomorrow.

13 June, 2011

Back on the horse

Counts were high enough to resume treatment today. The plan for this phase is clinic twice a week for 2 months.

06 June, 2011

Clinic was a bust today. We made the trip to Atlanta, but his ANC was two low to begin this course of treatment. We will hold off and try again next week. The low counts also mean that we will have to again prohibit visitation, and keep Robert home from activities.

-Bob Hart

25 May, 2011

Update

Robert has been fairing well this week. He has been getting sick a few times a day, but it doesn't get him down. He was able to attend his kindergarten "graduation", and really enjoyed it. I'll post a video of that once I get a chance to edit it down.


-Bob Hart

20 May, 2011

We are home

Some tears fell from a painful de-accessing, since everything was a bit sore and swollen from last night. But he recovered quick, and we hit the road.

19 May, 2011

New Day

Thing are better here, and Robert is comfortable. We should be released around 10:30 tonight.

Bit of a scare

It's about 3:30, and we are settling down from a tense ordeal. The needle that inserts into the port in Robert's chest somehow dislodged while he was sleeping. It came out of the port-a-cath, but not out of his chest. This allowed the sodium bicarb to continue to enter between the skin and the muscle, causing a large lump about 3/4 the size of a baseball. The good news is that it was just sodium bicarb. Had it been MTX or a vesicant it would have been dangerous. The risk in our situation was with the port itself. When the port-a-cath is regularly de-accessed, heparin is injected to prevent clotting. With the needled having been pulled loose without the heparin, and the port sitting for who knows how long while we slept, there was potential to get a clot in the port line. Compounding the issue was the fact that with his port area being so distended, it would be extremely difficult get it accessed again. There was a lot of tears and screams, a lot of fishing around withe the needle, but all is well as the port is accessed again. It flushed freely and had good blood return, indicating proper function. The sodium bicarb is again running to flush his system, get his toxicity levels lowered, and get us the hell out if here.

18 May, 2011

**Dispatch From the Field

As the end of the day crept upon us, we resigned ourselves to the notion that we weren't making it back to HQ tonight.  Mama had again left out for provisions, leaving us to fend for ourselves. With frothing horses, tired backs, and Corporal Roberts sour belly, we decided we had better make camp.  As we pitched our tent we came in contact with the indigenous tribe of this locale, who didn't seem to appreciate our camp idear in the least.  It seems that they are near entirely female!  Our inital excitement to this fact was short lived once we got to trading with the savages.  They all dress in funny clothes, talk funny and even wear some sort of internal listening devices around their necks.  And that aint nothin', every time we turn around they're tellin' us what to do!  Robert's got it the worst, they're always a' pullin and a' proddin at him. "Do this, don't do that", "swaller this, pee in that".  One of them even attacked him with a needle!  Hopefully tomorrow we can break camp, and get back where we belong.

They don't care for my antics here, if only I cared.

16 May, 2011

Back to the Hospital

We packed up and headed out this morning.
Here is Ben saying his goodbyes.

15 May, 2011

Never Surrender

We've enjoyed a nice week at home. Robert got sick quite a bit more than usual the first half of the week, but it didn't seem to bother him too much. As much as I'll be glad to see this round of hospital admissions behind us, the high ANC was a nice silver lining. When we move on, it will drop again and eventually he will return to lockdown. He was feeling well enough one afternoon to attend his schools field day. Not content with watching, he tried his hand at a few of the competitions. He little body tired easily but his heart did not, as he finished everything he started.

07 May, 2011

05 May, 2011

Held Over

Robert's labs came back, and he has not eliminated a sufficient amount of the MTX for us to be released.  They will take another level tomorrow evening, and we will likely be released then.

Visit

Kellie Pickler came to visit with the kids at Children's today.

02 May, 2011

Methotrexate

This is methotrexate... sure doesn't look like much.






















It looks like little more than an IV bag full of mountain dew. I find it amazing that when we are handling his urinal that we have to take care to wear rubber gloves, as contact with his urine post MTX could make us sick. Really? If it's dangerous coming out, what is it going in? I'll answer my own question and say it's the only option. That's exactly what it is and so far these poisons are working. Lord willing they will knock the hell out of this beast so as it will never attempt a return. Of course with all of the negative side effects, it surely has a positive one as well. Apparently, when you take it you get to eat your pie first at supper...score.
 

01 May, 2011

Sunday Evening

As the weekend closes we find ourselves at the end of a pleasant week.  Having no surprise hospital trips is something I would love to get used to.  We head to the hospital early in the morning for another week of High Density chemo. 

20 April, 2011

Better day

Robert was sick most of the day yesterday, but is doing much better today. The chemo is finished, and we just have to wait for it to clear his system. They are anticipating letting us go midnight Thursday.

17 April, 2011

Packing up

Since my last post, Robert made another run at a school day on Friday.  He rode the bus in the morning, and was very excited to spend a whole day.  However he didn't last very long before getting sick at school.   I won't go into specifics, but he hid the fact that he got sick, and instead said he was too tired.  He felt decent enough afterwards, but was afraid that it would happen in front of his friends in class and wanted to come home.  We've had a pleasant weekend since, and even were all able to attend church today.  There was a bit of parking lot drama that lead to him deciding no to go to his kids church, but rather to sit with us.  I would not let him wear a hat in church, but he was afraid that without it the kids would make fun of his hair.  So he skipped the kids church and sat with us.  It all worked out well, and he said he liked it in "grown up church". 

Tomorrow we are back to the hospital for the week for more high dose Methotrexate.  I am anxious to see if the second cycle will enhance the side effects. 

I have come to understand that there were a couple of events in Robert's and my family's honor Friday night.  I want to make it clear that I am not asking of anyone these sorts of things.  Anything like this that goes on is unsolicited, of someones own design, out of their own concern and kindness.  It's a difficult position to be the center of attention and the recipient of others labors.  You find yourself trying to define the limits of your pride.  The advice that I was given, and the method that I try to employ is to keep it simple, don't over think it, and just say thank you. That being said I continue to be humbled by the support and friendship of our friends and community.  I'm not going to get into individual thank yous on here.  That just feels like a bad idea to me.  But I will say thanks to all of you.  From the smallest tokens of friendship over the past 5 months, to the kindess of my neighbors, to elaborate functions like Friday and everything in between,  we appreciate you.

14 April, 2011

Fun Day

Robert has not had a fever since our Tuesday night ER trip.  He managed to stay fever free for 24 hours and his counts were still up, so he was able to spend a few hours at school today!  Everything went well, if it stays that way through the night he will take the bus in the morning (his request) for a full day of school.  Of course Kasie will be on standby to pick him up if things go awry.  He had a great time today, and is very excited about tomorrow.  It is a shame that we have to spend next week in the hospital.  I intend to take advantage of every single opportunity to send him, as long as his counts, and comfort permit.  He was not expected to return at all prior to the end of the year.  He gets lonely (his words) when his ANC is so low that he is not allowed to see anyone.  But in that circumstance we just have no choice, we have to protect him.  These higher numbers are a blessing, and a welcome break. If we can get a day in here and there, what a difference that will make for him.  I am anxious to see how the next high dose chemo will effect him, and if this favorable situation will continue or pass.

Notice the celebratory elbow thrusts as he nears his seat next to one of his buddies.

12 April, 2011

We have escaped

Back in the hospital

The fever returned, so back to the hospital we went. Robert is feeling quite a bit better, but when his fever hits 101 they make us come in. Hopes are high for getting back home tonight
Kasie isn't here to supervise so were getting cracked out on mountain dew and skittles. That's just how we do it.

11 April, 2011

The Roller Coaster

Since my morning post, Robert did in fact develop another fever.  We went to the hospital this afternoon where blood cultures were taken, antibiotics and fever reducer were administered, and we were subsequently released.  I was rather surprised to be sent home, another one of the benefits of this surprise window of high ANC that we are experiencing.  For the first time since this all started, we are actually allowed to give fever reducer here at home tonight, and in the early morning.  If he has a fever after 10 am he has to go back to the hospital.  If he manages a cool head, and feels well enough, he can make a trip to school for a half day on Wednesday.  It was difficult to see his face this morning when Kasie told him he could not go to school, and he would have to go to the hospital.  He was very excited to see his friends.  Last night he laid out his clothes and got his backpack and everything ready to go.  I hope he gets a chance to go a few times before this window closes.  We are very happy that he may get a chance to go to school, at least a few times.  It was not expected to happen before the end of the year.  Next week is back to the hospital for another high does of the Methotrexate.  Even if his counts stay high, we will start having to contend with the side effects of the meds as the treatment progresses.  So it is possible that his counts will remain high, but for him to feel too sick to go.  So far so good regarding the mouth/ throat sores, one of my bigger fears.  They just sound so excruciating, I pray that he can be spared from them.  He has two bad ingrown toenails  which are causing him some pain.  Another little present under the chemo side effect tree.  So at home were constantly swishing mouthwash, taking pills, getting sick, and soaking feet.  But at least were at home.

Now what?

We were able to enjoy a beautiful weekend at home since leaving the hospital.  Yesterday was the kind of day that one would ask for. It was 88 degrees, the boys helped me water the flowers, and right as we finish the ice cream truck rolls through....great day.  We have been floating on a cloud over Robert's ANC counts.  It turn out that as rough as this Methotrexate is, it does not greatly reduce counts like the other therapies.  This means that we are enjoying a small window where we can ease up on most of the precautions and isolation that we have become accustomed too.  In fact, his ANC is so high and he was feeling so well, that we were going to let him go to school for a half of a day this week!  He is very excited about getting to seem some friends.

We hit a bit of a bump in the road.  He developed a terrible cough last night.  A persistent cough can be a side effect of an allergic reaction to Methotrexate.  So we didn't let him go to school today, and Kasie called the docs for direction.  In the absence of a fever they are not overly concerned, and directed us to the Pediatrician.    Could just be a cold, which is actually ok at this moment because he is in this window of strong immunity.  Could be allergies,as the pollen count here is off the charts right now.  We are holding our breath on the mouth sore issue.   If they develop, they usually begin  3-7 days after treatment.  Today is day 6 and I believe that he may have one small one.  He uses a mouth wash four times a day to help prevent them, hopefully they will stay at bay.  Maybe school tomorrow, I'd sure hate for him to miss this opportunity.

07 April, 2011

We are headed home.

Thursday Results

After the final dose of Methotrexate (for this trip), we have been waiting for it to clear his system.  We have just received word that the toxicity levels have reduced below the required point to allow us to go home.  We will likely be released this evening, ending our stint after 4 days.   We are excited to be going home, and are cautiously optimistic about another week at home before we repeat this process.

05 April, 2011

Tuesday AM

A little bit rough this morning, but not too bad. Robert had been getting sick quite a bit, but it seems to be trailing off as the stomach meds kick in. Not enough to suspend Lego play, but a smile was not available at this time.

04 April, 2011

All systems go

Robert's numbers were good enough to begin this phase of treatment as scheduled and his spinal tap is done. He is still sleeping from the anesthesia.

03 April, 2011

A little yard work

Robert was feeling pretty good today, so we spent some time working and enjoying the sun before our stint in the big house. He helped me spread straw in the back yard over grass seed. Of course once the hose came out, I lost my helper quick.

Getting Ready

Tomorrow morning we head back to the hospital for a 3-4 day admission.  Of all the trips that we have made, this is the first time that the admission has been scheduled.  It's advantageous for planning purposes.  We can put more thought into what we are taking, have everything ready, arrange for someone to watch Ben and Allie etc.  The only disadvantage is that we know it is coming, and everyday has a discussion about the daily countdown.  The surprise trip has the silver lining of the blissful ignorance that you have a few hours before.  Nonetheless, the emergency trip is a stress inducing logistical nightmare.  Given the choice, I'll take the planned and scheduled trip every time.  Of course we do have the one caveat of counts.  It is possible that we will make all arrangements, load up the van and head to Atlanta only to be turned away due to low counts.  Nothing is 100%.  We have four of these admissions, and if all goes according to plan they will occur every other week.  Each one however, is count dependant.  We could be delayed on none, or each and every one.

The reason that Robert is being admitted, is that he will be receiving a very high dose of a Chemotherapy drug called Methotrexate.  He has had it before in small increments, injected into his spine every time he has a spinal tap.  His initial plan called for this round of IV Methotrexate to be administered in a frequent clinic setting, with ever increasing dosage.  However since being switched to the high risk protocol, we were recommended this other option.  The new standard of care is to administer the MTX in high dosage, 4 times.  The primary risk is potential damage to the kidneys.  So while admitted, they will monitor his kidney function and toxicity levels, releasing us when everything is back to "normal".  The second issue is severe mouth sores.  It was explained to us that Robert will likely develop them and they may cause him quite a bit of discomfort and difficulty.  He may have to be on pain medication, and swish a topical anisthetic in his mouth to help him cope with the pain.  Maybe he will be spared them.  But I have to imagine that if the staff took the time to tell us about them, that they are likely to be a factor.  If his counts are high enough to procede, he will start the day with a spinal tap and a bone marrow aspirate in clinic.  Then he will begin his chemo and move to a room in our home away from home on the Aflac Pediatric Cancer Floor.

01 April, 2011

Another way to follow

If you would like to be notified when there is a new blog post, and aren't into rss feeds or standard following methods, there is now another option.  If you look at the bar on the right side of the page, right under the blog archive you will see a box titled "follow by email".  If you wish you can enter your email address and you will receive new posts by email.  If there is no post for a day, you will not receive an email for that day. If there are multiple posts in a day, you will receive them all in one email in the evening.  The only downfall is that if you only read the posts in your email, you will not see any of the information on the other parts of the page...just the posts.  So, if you go this route be sure to occasionaly check in on the blogsite to read any info that may be in the peripherals.

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.

28 February, 2011

Another Monday Clinic


Nothing bad to report, all appears to be proceeding according to plan. Robert's ANC is the lowest yet, meaning that his immunity more compromised than ever. He was able to get outside in the sunshine yesterday. It was 75 and beautiful, and we believe fresh air helps all. After a few laps on his bike, we switched to just sitting outside. His red blood counts are getting low and he tires easily. We expect another blood transfusion next week.

22 February, 2011

Long Day




Yesterday's clinic was a 9 hour affair. I started out at the clinic with Robert and Kasie but had to leave early for my first out of town work trip post diagnosis. It was hard to leave, even harder to leave him in a hospital bed, but it was time. All went well, Robert's counts were better than expected. As we resume the chemo injections at home, we will wait to see if the fevers return.

15 February, 2011

2/15/11 Be My Valentine

Chemo clinic had a little drama yesterday, but ended well.  What was intended to be one of the quicker visits, turned into most of the day.  Robert has been quite sick all week, which led the doctor's to running enzyme and pancreatic tests to ensure everything is as it should be.  It seems that it is, this is just normal chemo side effect sickness, but if it continues they will check again.   The next installment of terror came when Robert cried with pain as they injected chemotherapy into his port.  The port ties directly into the superior vena cava above the heart, allowing meds to enter the blood stream directly.  Some medicines like Vincristine (chemo) are  vesicants, which mean that they can cause excessive tissue damage if they escape from the vein.  Due to Robert's reaction to the Vincristine push, which he has had no trouble with before, it was decided that the port should be checked.  So down to the Radiology/ Fluoroscopy lab we went.  The injected a die similar to MRI contrast die into his port,as we observed everything on a real time xray (fluoroscope).  Although everything looked wrong to my "expert eye", the doctors assured me that everything looked normal, and no problems were found.  I must have pointed and asked to many questions. I know my son is at one of the best pediatric blood cancer hospitals in the country, but they're still gonna have to deal with me.  They may be good at looking at pictures, but lets see em' dovetail a drawer or cope crown molding.

The painful reaction to the meds will remain a mystery, under the guise of "lets see if it happens again next week."


I hope that everyone had a happy valentines day.  Below is Robert's Valentine box that he and his Mom made.  Of course he wanted a robot. They wrote valentines for all of his classmates, and made this over the weekend.  Kasie carried them to the school in the morning while we were in Atlanta, so that he could still participate in the goings on.

08 February, 2011

2/8/11



We had a very long day at clinic yesterday, but all went well and we were able to come home. Robert's white counts are very low, and will stay that way for a little while. This mandates that we be extremely germ conscious. His red counts were also low, so he received a blood transfusion as well. It's amazing how a bag a blood can bring his color, energy and spirits back so quickly. This new, stronger round of chemo is making him sicker than the previous, but we are all celebrating the fact that there are no shots at home this week.

05 February, 2011

2/5/11 "Yinzers"

The fevers seem to have subsided for now, and Robert is feeling better.  I am grateful that we have clinic on Monday and he will get a good once over.  Now we can relax a bit, and have an enjoyable weekend.  Since no one is allowed over right now, we are stocking up for our own Super Bowl party.  Robert refuses to take off his vest today, excited about tomorrow's game.  As Steelers fans, this is a welcome distraction from everything.  As you can see, his swelling his gone down quite a bit, during this steroid break.


Enjoy this inspirational yet equally educational video.

02 February, 2011

2/2/11 Fever Pitch

The doctors are trying to determine the cause of Robert's high fevers.  The purpose is to ensure that there is not an unattended infection that his body is unable to fight on it's own.  One of the chemo treatments that we give him at home, has a common side effect of a fever.  However, we just cant write that off as the cause.  Every fever event must be evaluated, to determine it's source.  And since he also has a hacking cough and some fluid in his lungs, it makes it even more difficult to casually attribute his temps to the meds.  As they spend a day running tests on his cultures and labs we have the go ahead to stay home, fever or not.  The course of antibiotics that was given him in the ER last night was about all that they could do for now, so we will wait it out. His temp has returned back to normal in the last couple hours, but its almost time for this same questionable injection again.  Will it start all over?  Hopefully through a process of elimination we can determine that these chemo injections are causing the spikes, and breath a little easier.

Escaped

We've made it home, a surprise to all involved.

In the hospital





We've been at the  ER for a few hours now due to a high fever, probably from a viral infection. Robert is getting a course of strong antibiotics, and they are running lab work. The results of which will determine if we go home or are admitted.

31 January, 2011

1/31/11 Home from Clinic

Robert and I fared well on our own today.  I even managed to return 50% of Kasie's calls and texts, no small feat if you understand the numbers involved.  I believe that AT&T surely had to task  us  our own Satellite for the day. National security may have had to suffer, by my wife knew up to the minute what was going on with her boy.

The Chemo itself went without event, as did the lumbar puncture (spinal tap).  We do however have one interesting development.  It appears that Robert has contracted a virus that is giving him a hard time.  Nothing that is terribly serious, but cause enough for concern.  He presents as having a bad cold, with a hacking cough.  With most kids, you'd suffer through it and wait it out, slowly improving.  But with an impaired immune system, that is on a downward trend, it's a bigger deal.  Fortunately Robert's counts have not yet hit Nadir.  Though his numbers are dropping, and will likely bottom out this week, they are hanging on a few days longer than expected.  Hopefully the benefit of these few extra days with some white blood cell function will help get him through this.  We are monitoring his temperature and obvious lung function.  An unfavorable development of either will result in a hospital trip.  To enlighten you on the odds of this, I'll share with you what an Oncology Nurse told me today.  When leaving the clinic for the day I told the Nurse "see you next week", she relied "Oh I'm pretty sure I'll see you boys earlier than that.".

All that aside, Robert is happy, comfortable, and laughing a lot.  He appears to be no more than a tired little boy with a bad cold, most would be none the wiser. My Son has an amazing spirit and a sharp mind.  Two attributes that are not easily bested by anyone or anything.  To hell with Cancer.