18 December, 2012

Rounding Second...



It's hard to believe, but we've just passed another diagnosis anniversary.  This December 16th marked the completion of Robert's second year of treatment, and today's treatment kicked off his third. 

If you were to tally up only regularly scheduled doses, omitting all extras given when sick or in the hospital,  in the last 24 months Robert has had...

24 spinal taps
720+  days with a new chemotherapy dose administered.
1500+ mg of steroids
4728+ pills

These are called beads of courage. It is a program where each bead represents an ordeal or event. There are specific colored beads for surgery, needle pokes, blood transfusions, IV chemo, pulmonary treatments, hospital admissions, holidays spent in the hospital etc...etc...  Each of these events only earns you one beach each time.  This will give you an idea of how much of this stuff he's gone through so far. And we surely have left the hospital on more than one occasion forgetting to pick up his beads for a particular visit (mostly when Dad's there)




The tentative end of his chemotherapy protocol is April 2014, a little further out than I thought it was.  However Lord willing, only one more December 16th to count.

Clinic went well, and Robert is resting after the long day.  His ANC is extremely low, probably due to a virus.  Luckily he is out of school this week, so maybe we can get through the ditch without a hospital stay.  His Monocytes are high, which are a good sign that his bone marrow is working hard at making healthy cells.  We have a bit of concern over some headaches that he has been having.  They are more severe than his normal headache, more migraine like.  Its possible that its just some sort of migraine. The most likely cause and lesser of the evils is steroids. Prolonged use of high dosage steroids can cause pressure on the brain.  If it persists they will conduct another form of spinal test during his next spinal tap.  The least likely and most terrifying cause could be Leukemia in the brain, but that's just not going to happen.

All the kids are excited about Christmas, and Robert adjusts the advent calendar every morning.  We are truly blessed with how things have progressed.  Furthermore, we are eternally grateful for those who have and continue to help in countless ways.

Merry Christmas

25 October, 2012

24 October, 2012

Wednesday, and still here.

He is doing quite a bit better, but his sats have been dropping to 80% when he sleeps.  With a day of respiratory treatment behind us, we have hopes for better results tonight. If so, we'll get to go home tomorrow.

23 October, 2012

Not yet

Robert wasn't released today. They're waiting for his chest to clear and his oxygenation to improve. Possibly tomorrow.


22 October, 2012

Hospital Stay

Robert has been admitted to the hospital with pneumonia. In addition to the normal concerns, the infection has thrown his counts way off. He'll likely be in for a couple days until his lungs clear and they are able to get his chemo protocol back on track.

04 September, 2012

The end of summer

All seems to have been going well over the past couple months.  Robert's ANC keeps rising, which sounds like a good thing, but its cause for more chemo adjustment.  Its a little frustrating that at this point they seem to be constantly having to tweak the protocol. 

People frequently ask me about his progress.  It's difficult that there is so little to say, no tangible benchmark of success.  You can only comment about the current ease or difficulty of the experience.  With blood cancer there is no tumor to measure, no mass to keep an eye on, all you have is the protocol.  You ride the protocol to the end, and THEN you watch.  Praying that the cancer doesn't come back.  Now that we're halfway through this, I'm starting to think about what that's going to be like.



Robert has been granted a trip to Disney by from the Make-A-Wish program.  We are supposed to leave soon, but that is now up in the air as he has broken his foot.  A doctor visit this week will determine if the trip will have to be postponed. 

 
 


10 July, 2012

July Update

The IVIG infusions over the past couple months seem to have Robert back to his old self. They will likely continue for the duration He has a cold/cough that he can't seem to shake, which is causing his white cells to mass a response. This causes his whites to be a little higher than the doctors would like during this phase of treatment, but they don't want too make any adjustments yet, as they know it's the cold causing the rise. However without a change next month, the meds will likely have to be adjusted.

He had a great time at camp, and did just fine on his first week away from us. He returned with lots of stories, some of which we suspect may be true.

07 May, 2012

Chink in the Armor


     Robert has been doing fairly well.  We've experienced a few rough weeks in April, like we haven't seen in a while.  He has seemed a little more sickly with a chronic raspy cough, diminished energy, and an increase in general pain and discomfort.  

    Fortunately, the docs seem to have found the culprit.  Unfortunately, my little trooper has one more thing to deal with.   It seems that Robert has developed an IgG deficiency. IgG is short for Immunoglobulin. Which according to Ben is a mortal enemy of Spiderman, but more accurately is a type of antibody molecule created by plasma B cells. Basically these molecules contribute greatly to secondary immune response.  This means that when we gauge his immunity through cellular counts (CBC/ dif), we are not getting the entire picture.  Because those cells present are not functioning quite properly.  Sounds eerily familiar to the explanation for Leukemia, doesn't it? 

     This condition is certainly not unheard of in kids undergoing extensive chemo.  And can be attributed to the vast array of poisons we've seen fit to pump through his little body throughout the past year.  (*insert guilt here).  It's not as bad as it sounds as there is a standard treatment, and at least we have a cause for April's decline.  From now on, when Robert visits clinic he will receive IVIG transfusions.  I hate to think that after his spinal tap, and after his IV chemo, he now has another protocol.  But in the scheme of things...we'll just throw it on the pile with the rest of the things that we regret he must endure.  I'm grateful for competent physicians that can detect a problem, diagnose it, and provide a solution.  We are truly blessed in that regard. The transfusions should get his immunity back up, and get him back up to speed in no time.    

     Basically, the IVIG is an IV infusion of the Immunoglobulin that he is lacking.  It is gathered from thousands of different plasma samples.  So cheers to the scores of college kids that are selling their plasma for beer money!  Keep up the good work!

Now a quick note on Robert's favorite topic of the moment...SUMMER CAMP!

      He is headed off to camp Sunshine in a few weeks, and is very excited.  We all went down last weekend and visited the facility for a day of fun.  What an amazing place.  Its a full-on, old school summer camp geared for kids undergoing some medical ordeal.  They are stocked with everything needed for an amazing summer camp experience.  Not limited to; cabins, canoeing, fishing, hiking, swimming and zip lines.  And to top it off, a medical facility with all of the equipment and medications these campers may need, staffed voluntarily by the doctors and nurses of Children's Healthcare of Atlanta.  If you want to see people doing God's work or an organization worthy of your donation that does good out of pure kindness, then you need not look any further than Camp Sunshine.

That's all for now, more to follow when I darn well feel like it.  -Bob

    



18 March, 2012

From Kasie

Thoughts from me:

So I thought it was about time I shared my thoughts with everyone. Bob has his blog and although he doesn't update too often he always shares when there is something to report. No news is always good news, and right now things have been ok. We've had a crazy month of ear infections, colds and wheezing but after lots of different antibiotics and a nebulizer we are finally on the mend.
Overall things are going smooth. We've got our clinic appointments planned to a T, his med schedule runs like clockwork. We know what days he will have his steroid outbursts and his endless hunger patterns. School has been going well but to me he's seems so much older than his peers now. I feel like he's lost part of his childhood dealing with such an adult thing. He gets frequent headaches and complains that he "doesn't feel like himself". Really breaks my heart. He tires easily and that frustrates him. We went to a birthday party today and as I looked around I teared up, out of jealousy I thought, why him? It's strange because I can talk about leukemia, I can answer any questions about Robert and not get emotional. It always hits me around other kids. I'll be in his classroom, look around and start to cry. He'll have a friend over and boom I'm a mess. Strange.
I've heard a lot of bad news lately from friends of friends about kids with Roberts exact same diagnoses relapsing. There have been three in the past two weeks. All finished with their years of treatment, all post port removal all several months off treatment. Very scary to think about. We often forget that what Robert has comes with lifelong repercussions. Will it return? What long term side effects will he have? What problems will he have when he's older? Can he ever have children of his own? In 2 1/2 yrs he will hopefully get "cured" status but it will never end for him there. Everyday I look into my precious child's eyes and wonder how he does it. He is so brave and so strong and so mature. We were discussing what he would like to choose for his upcoming make a wish and he said "can I wish for my leukemia to go away?". Wow. I wish buddy, I wish. Since that isn't possible he then asked if his wish could take him to see Santa in the north pole. Ummmm.....talk about thinking on your feet! I quickly explained that Santa doesn't allow civilians at his workshop. Strictly forbidden. So, I think he's decided on Disney world.

I read this on a blog the other day and felt it hit the nail on the head because most days I too feel like an egg.

"Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make.


An egg has a polished smooth outer appearance with no cracks or weak spots ......visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.


That is where parents of children with cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.


Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again."

by Juliet Freitag

So very true. Please keep Robert and all those children with cancer in your prayers tonight. It's a lifelong journey for them and their families.
Kasie

03 March, 2012

Made it home

A viral infection is the culprit.

Emergency Room

4:00
Robert had a high fever and had to go to the emergency room. Hopefully his counts will be high enough that they send him home after treatment.

22 February, 2012

February Clinic

Roberts counts appear to be back on track with the adjusted dosages.  Long clinic this time as he had "the works".  Iv chemo, intrathecal chemo,sedation, spinal tap, breathing tratments, and valentines candy. Makes for an awful long day, however there is no complaining as we are fortunate enough to head home afterwards. 

In the few days since clinic Robert has managed to develob a viral infection, and ear infections.  No fevers yet but pessimism keeps my figurative bag packed. Getting to the tail end of this month steroid rage, and coupled with being sick I'm glad to see it go.

Robert is working hard in school.  A plan has been developed with an occupational therapist to help with his fine motor skills issues.  He works and tries so hard, such a sweet boy.

26 January, 2012

Clinic

Robert returned to clinic this week, and all went well. His cell counts were a little too high (too normal), so they increased the chemo. The goal is to keep his counts in a "sweet spot" of not being dangerously low, but not returning to normal levels. Supposedly this increases the effectiveness of the therapy.