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.