16 December, 2013

A rough couple of weeks

Last week while Robert was home waiting out his low counts, Ben came home with strep.  By the time we caught it, both he and Allie were infectious little germ machines. Kasie segregated them to different ends of the house, washed hands, walls, doorknobs, husband, children and anything else that would hold still somehow managing to keep him healthy through the contagious period.


 Robert spent this week in the hospital in the attempt to resolve his lung issues.  They performed another bronchoscopy and ran a battery of every test they could think of.  They haven't completely confirmed it yet, but the Pulmonologist is strongly leaning towards a diagnosis of a condition called Plastic Bronchitis.  Here is a paste from the interweb;

"Plastic bronchitis is a rare condition characterized by the formation and expectoration of long, branching casts of the bronchial tubes. Primarily a pediatric problem, plastic bronchitis is usually associated with some type of underlying pulmonary disease including bronchiectasis, cystic fibrosis, bronchial asthma, and allergic bronchopulmonary aspergillosis. Symptoms include violent coughing, wheezing, and episodes of severe dyspnea.
Pathologic examination demonstrates that the bronchial casts diagnostic of plastic bronchitis are composed of layers of mucus thickened by evaporation or absorption of fluid and the breakdown products of inflammatory cells.
During bronchoscopic examination, the tracheobronchial tree frequently is found to be filled with white, cheesy material too soft to grasp and remove with forceps but too thick to suction. During episodes of severe distress, patients have been known to cough out a complete cast of the tracheobronchial tree.

  • In plastic bronchitis, inability to clear mucus casts from the lungs results in pulmonary complications including impaired gas exchange, chronic or persistent infection, atelectasis, and permanent tissue damage.
  • Mucus hypersecretion, which occurs as a response to inflammation secondary to infection and epithelial tissue damage, further exacerbates the incidence of mucus plugging and cast formation.
  • Retained secretions provide a culture medium for bacterial pathogens. Consequent infections produce still more mucus, initiating a vicious cycle of mucus obstruction, recurrent bouts of pneumonia, bacterial colonization, and, finally, respiratory failure.
In addition to therapeutic interventions to treat underlying pulmonary disease, patients with plastic bronchitis require aggressive bronchial hygiene, including daily Airway Clearance Therapy."

From what I understand the condition rare, but when it is diagnosed it is more frequently associated with congenital heart conditions.  We were told that there was no known correlation to the cancer treatment, and the doctor could only find one other case with an ALL Leukemia patient.

Basically what it means for Robert is that he has a substance in his lungs that he can't clear, and his body has been making him cough incessantly trying.  New meds, breathing treatments, and a new therapy involving a vest that aggressively agitates his chest are part of the new routine. 

 So hopefully we're on the right track to getting him feeling better.  

Today is the 3rd anniversary of the diagnosis. Chemo is scheduled to end in 2014, things are going to be a bit different next year.

04 December, 2013

Lockdown

Counts bottomed out again this week, about as low as we've seen them in a long time. The speculation is that Chemo was restarted too quickly after his last ordeal. So Robert is at home this week waiting for his immunity to rebound.  Aside from the other 4 of us in the family, his teacher Ms. Gowder is the only one who comes in. (They're doing some schoolwork in the photo.)

20 November, 2013

Home again

We've made it back home, but we have to keep him isolated until we can check labs at the end of the week.

19 November, 2013

Tuesday

Counts are up a bit today, but still so low that he is neutropenic. Nonetheless they may turn us loose tonight which surprises me. 

Don't get me wrong I'm happy to get him home, but it was confirmed today, that it was only rhinovirus (common cold virus) that put him in here. And his immune system is only barely stronger now than it was then.
That being said, the fever is gone and IV antibiotics won't help againt RV.  The counts are low but trending up. If all we can do is wait, I'm happy to not do it here. Hopefully it won't result in a quick return.

18 November, 2013

Back again

Monday_

After just being in the ER, Robert had to head back on Sunday evening with a fever of 103. 

They increased his chemo last week, which dropped his counts pretty severely. He picked up an everyday virus somewhere and he just couldnt fight it properly, so here we are.  The fever is under control now, but they're keeping him on IV meds and isolation since his counts are bottomed out.

16 November, 2013

Hospital Trip

Robert was in the hospital Friday night.  He has been having recurring nose bleeds for a couple months, increasing in frequency and severity.  Now they are often accompanied by large blood clots.  The pulmonologist has referred us to a ENT doctor, but after a couple days of bad bleeding we hit Children's ER last night.  The on-call ENT scoped the nasal passages and saw mass irritation, but nothing particular that could be cauterized or "fixed".  That being said, they also confirmed that there is no cause for immediate concern. So we are going to follow up and keep working on a solution.  It's looking like the cause could likely just be a cumulative result of 3 years+ of daily chemotherapy.

28 September, 2013

Caps for a CURE

Robert made the Gainesville Times for his fundraising efforts, we're very proud of him

The article along with several photos can be seen online HERE  http://www.gainesvilletimes.com/section/6/article/89368/

22 September, 2013

Longest post ever

Robert's breathing is significantly better.  The docs never came up with a diagnosis more specific than a severe infection, but nonetheless he seems to be getting better.  His lung capacity is still reduced, but he is able to sleep and lie down without the fluid accumulation. However, he is still coughing quite a bit so he will be going back for more tests this week.




This latest trial has served as a reminder that even after chemo ends next year, he will continue to be challenged throughout his life.  I'm not trying to be negative, as we have been truly blessed during the treatment program.  With Robert being in the high risk group for future recurrence, and the end of his treatment less than a year away, I've been thinking about it alot.  There are quite a few misconceptions regarding cancer.  I address the term "remission" in a very early post, so I wont beat that horse again.  Another misconception is the survival rate.  Well intending folks love to quote the wonderful survival statistics that we now have, in a valiant attempt to comfort you.  The big one for us is; 80% of kids survive Leukemia. This is a great statistic that is the result of significant medical advances that can be primarily attributed to the adaptation of clinical studies. If I would have had my son's diagnosis at the same age it would have likely been a death sentence. We are very grateful for these advances.  Nonetheless, lets pass this comforting statistic through my filter of harsh reality;

80% of kids survive Leukemia
My first thought on this, going back to diagnosis week;  Parents imagine your child being one of 10 in an airplane.  Now imagine that you get word that there is going to be a plane crash, but take comfort as only two of the kids will die in the crash.  Not very comforting.


My next opinion on this was formed when I learned of the definition of "survival".  All of the statistics are actually based on initial survival, for a period of 5 years.  What you don't hear is that nearly 2/3 of survivors later experience significant and chronic medical problems, or develop secondary cancers as adults that results from the treatment of their original cancer.  We're saving our children by pumping them full of poison and taking them to the brink, there's a price to pay for that, the collection of which  is currently weighing heavy on my mind...

Here's a clip from a Childhood Cancer website-

During and after cancer treatment, the main concerns for most families are the short- and long-term effects of the cancer and its treatment, and concerns about the cancer still being present or coming back.


It is certainly normal for families to want to put the cancer and its treatment behind them and to get back to a life that doesn't revolve around the cancer. But it’s important to realize that close follow-up care is a central part of this process that offers children the best chance for recovery and long-term survival.


Once treatment is finished, the health care team will set up a follow-up schedule. For many years after treatment, it is very important that children have regular follow-up exams with the cancer care team. As time goes by, the risk of the cancer coming back goes down, and doctor visits might be needed less often. But they are still important because some side effects of treatment might not show up until years later.


Because of major advances in treatment, more children treated for cancer are now surviving into adulthood. Doctors have learned that the treatment may affect children’s health later in life, so watching for health effects as they get older has become more of a concern in recent years.


Some of the more common late effects of cancer treatment include:


  • Heart or lung problems (due to certain chemotherapy drugs or radiation therapy)
  • Slowed or delayed growth and development (in the bones or overall) 
  • Changes in sexual development and ability to have children 
  • Learning problems 
  • Increased risk of other cancers later in life 
  • 74% of childhood cancer survivors have chronic illnesses, and some 40% of childhood cancer survivors have severe illnesses or die from such illnesses.
  • Cancer treatments can affect a child’s growth, fertility, and endocrine system. Child survivors may be permanently immunologically suppressed
  • Physical and neurocognitive disabilities resulting from treatment may prevent childhood cancer survivors from fully participating in school, social activities and eventually work, which can cause depression and feelings of isolation.
  • Statistics show that Childhood cancer survivors have more difficulty getting married and obtaining jobs, health and life insurance.
  • Body weight, obesity & diabetes.

I realize the the end of treatment that I so longed for when this all started, is no end at all.


_________________________________________________________________


Since we're in Childhood Cancer Awareness Month, I'll  also mention the following;

GOLD IS THE NEW PINK

Support Childhood cancer fundraising organizations, but as with any charities be careful which ones you choose.


  • In 2006, the National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

  • Pediatric cancer research is not only grossly under-funded by the government, it is also largely ignored by private drug companies. Pharmaceutical companies fund over 60 % of adult cancer research, but virtually nothing for kids.

  • And childhood cancer research only gets 2.96% of the money raised by the American Cancer Society.

  • The Leukemia Lymphoma society- on 2% actually goes to childhood cancer.


If you chose to give to an organization, be sure to do you do some research.  Some of the best organizations that directly affect the disease or the kids are locally/ regionally based.

Two of our local favorites;

CURE Childhood Cancer- Directly supporting Childhood Cancer Research

    Camp Sunshine Atlanta- Supporting Kids and Families through treatment

    Camp Rap-A-Hope

    25 August, 2013

    A holdover

    The breathing treatments that they gave us seem to be working. Although they aren't really fixing the problem, they are finally letting him get some sleep at night. He has also started an extremely high dose of antibiotics while the docs continue to figure things out.

    22 August, 2013

    Follow up

    No real answers yet. Robert is having difficulty sleeping at night and breathing due to the fluid in his lungs. Kasie is getting some short term meds that are supposed to help while this mess gets figured out.

    19 August, 2013

    Another hurdle

    The transition from the end of summer to the beginning of the school year hasn't been all bad. Robert is excited to be back in school and Ben is beyond excited to be riding the bus and going to the same school as Robert.. more so the bus really. Kasie is enjoying some time with Allie doing whatever it is that they do while the boys and I are out doing the same.

    That being said, we certainly haven't been without our concerns lately. We were getting frustrated with Robert's long persistent, maybe even chronic cough, and Kasie challenged the Oncology team about it. Her persistence lead to an appointment with a Pulmonologist who had instant concern. Robert had a CT scan on Friday to see if there was need for a scope, there was and he had his bronchoscopy today. The scope revealed that there is some sort of severe infection in Robert's lungs, that is causing him great difficulty in breathing. In fact while laying down under general anesthesia his lungs filled with fluid, causing a drastic sat drop/ crash and creating the need for a deeper intubation.

    He is doing fine and is resting at home now. The doc says that the procedure likely agitated things in his lungs, giving him a rough couple days. What ever the infection is, it has remained in his system through countless rounds of high dose IV antibiotics, and daily chemo. They took samples of the infection so that they can accurately  diagnose it, and then specifically treat it. The fluid sacs appeared to be similar to those from Cystic Fibrosis, although they do not think that is the cause, it will be ruled out along with everything else. The Pulmonologist is very motivated to find the problem, and fix it. That's all we've been asking for, so we're grateful for the ally.

    I'll share the results when we get them in a couple days.

    -Bob

    Please excuse any typos, created mobile and tired.

    24 June, 2013

    Summer is off to a good start.

    Robert Checking in at Camp Sunshine yesterday.
    (complete with his requisite mohawk)
     
    We are certainly gathering no moss, as things have been going a lot better the past couple months.  Robert has some pretty bad chest congestion that keeps him coughing all of the time, but we haven't been to the emergency Room since April...I think.

    He's been pretty active so far this summer.  We went to Jakes day, sponsored by the NWTF, which had all sort of fun shooting and outdoor activities for the family.

     
     
    Robert was also able to participate in an amazing event called Rides To Remember.  People from all over the Atlanta area brought there rare and supercars to a private speedway.  The owners just stood by their cars and the kids were able to go for 3 laps around the racetrack in any 2 cars of their choosing! Here he is in his first ride, a Lamborghini Superleggera.


    He spent the following week at Camp Rap-A-Hope in Mobile Alabama.  It is a camp for Cancer Kids very similar to our Camp Sunshine.  A friend of our who used to work in Children's of Atlanta is now the Associate Director there, and arranged for Robert to come.  He had a blast...Thanks so much Roz!

     
     
    Now he's off having fun without us, at what is probably his favorite week of the year.  It's tough to let him go, but the Doctors and Nurses from CHOA take good care of them while they graciously donate their time.  He's having so much fun he probably doesn't even miss us, well hopefully maybe just a little.
    

    19 April, 2013

    Again

    We were supposed to be at family camp tonight, to start a weekend of fun. Instead we're at the emergency room with another fever. Hopefully we can get home late tonight.

    28 March, 2013

    Out like a lamb

    We've certainly had a rough go of it lately. Our family has been cycling through one flu or cold after another. And when you have a kid with an immune deficiency, it seems endless. I think my kids must go to school and lick doorknobs or something. Nonetheless Robert has been in and out of the emergency room with high fever a few times, the latest being Tuesday night/ Wednesday morning. As a result, he been missing alot of school and activities, but we just can't seem to keep him healthy for long.

    We've been grateful that he has been released each time, and it sure provides a sense of victory to walk out of that ER at 3 in the morning holding his hand, on our way home.

    His headaches have gotten much more infrequent, making things a lot more comfortable for him. Thanks to all.

    14 January, 2013

    January

    We're having a long stay at clinic today. All is going well, just alot on the agenda. The docs did a pressure test this morning  during the spinal tap to try and pinpoint  the headaches. The pressure was normal, so that scratches one of the possible causes off of the list.