The Rest of His Life

We had our post-treatment conference with Jack’s oncology team last week. Each family unit was given an Off-Treatment binder.

binder

Right inside the binder is an Old Irish blessing:

May the road rise to meet you
May the wind always be at your back
May the sun shine warm upon your face,
The rains fall soft upon your fields.

We were given information on long-term follow-up guidelines, which includes the following:

  • Introduction to Long-term Follow-up
  • Emotional Issues after Childhood Cancer
  • Health Promotion through Diet and Physical Activity
  • Education Issues after Childhood Cancer
  • Male Health Issues After Childhood Cancer
  • Dental Health
  • Kidney/Bladder Health
  • Liver Health
  • Bone Health
  • Avascular Necrosis
  • Skin Health
  • Heart Problems Following Treatment for Childhood Cancer
  • Cataracts/Eye Problems after Childhood Cancer
  • Peripheral Neuropathy
  • Raynaud’s Phenomenon
  • Reducing the Risk of Second Cancers

Jack will continue with post-treatment check-ups for the rest of his life – he’ll be seen every month for the first year, then every 2 months for the second year, every 3 months for the third year, every 6 months for the fourth year, and then yearly after that. He will get blood tests run at every visit. Every 5 years he’ll also get an echocardiogram to monitor his heart for abnormalities that may show up.

Due to both the cancer itself and the treatment for it, Jack is at greater risk for developing all kinds of things, and the oncology team reinforced the fact that any time Jack goes to see a new doctor, that physician needs to be informed about exactly what type of treatment Jack received and how much. We were told that MOST physicians will need to be educated by us or Jack because most will not have ever treated a childhood cancer survivor.

In September (six months post-treatment), Jack will start the process of being re-vaccinated for everything he already received pre-diagnosis.

Kaiser sent a referral for a full neuropsychological evaluation with an outside psychologist. We’ve scheduled appointments for that after the school year ends since the testing takes 6-8 hours. It’s split into four sessions over about a month’s time, and the results will hopefully give us some insight into how Jack’s brain has been affected by cancer treatment and guidance on how to help him in school and life.

Now that treatment is over, a lot of our focus is on dealing with the emotional impacts of the last three years. We have an immediate problem to address, which is to figure out how to get Jack’s lab draws done. We were unable to acquire a blood draw last week because of the extreme anxiety and panic Jack experienced when we went to the lab.

Now, let me be clear: this is beyond fear – it is Post-Traumatic Stress Disorder. Jack went into the lab armed with all kinds of tools to help deal with the pain of the needle (yes, we had the Buzzy!), but once he was in the lab chair and the tech started to prep him, something took over in his brain and he went rigid, started shaking and thrashing, and crying and screaming. He couldn’t hear anything we were trying to say to him, could not process our words, and could not be held still even with two of us trying. I put the Buzzy on his arm, and yet he kept screaming, “I need the Buzzy!” He just couldn’t even feel it – he was somewhere else entirely. The experience was a lot like his night terrors – we were powerless to help him and the lab techs ultimately decided it was not safe to try to stick a needle in his arm.

It’s heartbreaking to see Jack going through this. It’s also necessary to monitor his blood counts because if the cancer was going to come back, it’s prime time for it to do so now that the chemo is leaving his body. (According to the Dana-Farber Institute & Boston Children’s Hospital, between 15 and 20% of children who are treated for ALL and achieve an initial complete remission will have the disease return.) He still has complaints about feeling unwell from time to time and a CBC is the best way to see what is going on with him.

So we’re in search of a therapist who can help us. Unfortunately, this is not covered by our insurance. Kaiser has great mental health classes, but when it comes to long-term or intensive therapy programs, they are sorely lacking (they even have to refer patients outside of the system for the neuropsych eval, something that they do for every childhood cancer patient). Continuity of care only goes so far with them. It’s on us to figure out the best, most expedient way to get help without going broke. (And what if therapy doesn’t work? What then?)

Even aside from the immediate problem of getting Jack to be able to take blood draws, there are clearly emotional scars that need addressing. We’ve tried play therapy with an outside therapist and then short-term CBT within Kaiser and had limited success. Some healing simply takes time, but he will still need professional help to learn how to process his experiences and be less controlled by his anxieties.

So, treatment is over but life after cancer stretches before us. It’s a new journey – a better journey than the previous one, but not without its own challenges. Thankfully, Jack is a fierce and determined survivor.

TigerJack

“He’s watching us all with the eye of the tiger…”

End of Treatment!

Jack’s been off treatment for over a month! I’ve been terribly remiss in posting about it here. We took a few pictures, though. The first is his last day of chemotherapy in the clinic. The second marks the last day of oral chemotherapy altogether!

We’ve already seen a big difference in Jack. He is full of so much energy now! He has a huge (it seems to us, anyway) appetite! He’s waking up on his own a lot in the mornings rather than needing to be dragged out of bed. It’s AWESOME!

His Broviac catheter has been removed from his chest, as well. That is both good and bad. Good because we don’t have to go to the ER for a fever anymore and we don’t have to worry about dressing changes! Bad because it means now Jack needs to get blood draws with a needle from now on…

And he is deathly afraid of needles.

We tried to get labs drawn this week and it was a miserable failure. We are now looking at finding a therapist who specializes in EMDR (a therapy used for PTSD) in kids to deal with the trauma issues he has developed. We need to get this done soon and quickly! We can also try a finger prick approach, but I am not convinced that will work any better than a needle in the arm. Even if it does, he needs more therapy – his fears and nightmares (and NIGHT TERRORS) are still terrible.

So, that’s where we’re at with that. We are celebrating the end of treatment tomorrow by hosting a party in Tilden Park. Jack has come up with some cancer-themed games he wants to play and we’ll eat, drink, and toast to the fact that we survived the last 3+ years!!

Fuck cancer, y’all.

To Simpler Days!

This year is trying to get the best of me.

My grandfather has been hospitalized several times and nearly died due to advanced liver disease. At one point he was in a coma and then he was awake and started planning his memorial…then one day he got up, got dressed, and decided since he hadn’t died yet he wanted to go home. We are all shocked as hell that he is doing relatively well now! I have no idea how long that will last, though.

During one of his hospital stays, things got even crazier when my grandmother had a heart attack, coded, and was life flighted to the same hospital my grandfather was at. A stent was placed and she was released a few days later. She looked amazing, all things considered, when I finally made it up to see her and my grandfather.

While those things were happening, we were getting Jack checked out for a fever in the first of three ER visits. That fever went away after the requisite two doses of antibiotics and nothing materialized from it, thankfully.

Not too long after, though, he had an allergic reaction to a breathing treatment he’s been getting for over a year. We marched straight from the Pulmonary department down to the ER and he couldn’t wear a mask because he couldn’t breathe…he recovered before a doctor saw him, though. (He won’t be on those breathing treatments going forward…)

A couple days after that incident Jack started developing a cold – probably something he caught in the freaking ER! He’s been battling it since and a week ago we ended up back in the ER again due to another fever. It’s been over a week now and the fever doesn’t want to let go, although it’s slowly losing its intensity. Jack has been out of school all week (right when we got his IEP in place, too!).

Meanwhile, the company where I’ve worked for the last 7.5 years is being acquired. My position is definitely one of the ones that will go away, but I don’t know exactly when (maybe May?). In the mean time I’m still working when I’m not home with a sick kid. We will be fine, by the way, but it’s still a big change that I have no real control over.

Tomorrow morning I’m taking Dez to see a pediatric neurosurgeon to assess if there’s anything we need to do about his plagiocephaly (probably nothing, but maybe a helmet, unless the universe has something else in store for us).

Also, David is taking a couple of college classes and we refinanced the house and Jack is Boy of the Year for the Leukemia & Lymphoma Society and the end of treatment is this week (!)…

So. I don’t even know what day it is anymore. I’m just chugging along and trying to keep my head above water. I’m looking forward to the end of Jack’s cancer treatment and life getting just a smidge simpler.

Please, let it get simpler.

IEPs Are A Full Time Job

We got the results from the school’s academic and psychological assessments of Jack on Wednesday. It’s 18 pages of assessment results that seem to require a degree in childhood education to understand. I’ve read and re-read the information and googled  my little heart out, but it’s still not clear what it all means.

On the academic assessment, the only issue that showed up was “math fluency” where he rated low average, and a slightly low score (but still considered average) in oral reading comprehension.

For the psycheducational assessments, he’s all over the board. Scores range from ‘borderline’ or ‘at risk’ on the low end to ‘superior’ or ‘above expected level.’ Jack hits every level in some area, which I think is what prompted this note:

“Jack’s unique set of thinking and reasoning abilities make his [cognitive functioning assessment scores] difficult to interpret.”

That is great! And yet…not-so-great. I love that my kid is unique, but being unique makes it quite difficult to identify how to help him be successful in school.

There are many notes throughout the pages of results that state “attention fluctuated” or “drifted off.” This is uneducated speculation on my part, but I’m guessing this is leading to an ADD diagnosis. (He was assessed for this through Kaiser recently, as well, but we don’t have the results back yet. In talking to his dad about the information and going through the process, I think we both feel Jack is likely to be diagnosed with ADD – just without the hyperactive part.)

One thing in the assessment results that stuck out was: “Jack exhibits a processing disorder in the area of attention that is affecting his classroom performance.”

From what I understand from the document and some googling, “slow processing” is a THING but it may or may not be considered a learning disorder (I think that depends on each district’s interpretation). And then, because of the part that says “in the area of attention,” it’s unclear whether this is just a result of something like ADD or if there is something else going on, too.

In any case, the assessments are helping with focusing on areas where Jack needs some help, either through accommodations (like more time to complete tasks) or some sort of specialized education. Naturally, most of what is described is not news to us at all, but it’s helpful to see where Jack is NOT having problems so that we can identify what the likely issues are that need to be addressed.

I guess I’m learning that IEP assessments are not cut and dry – which is why, I guess, there is nothing in these documents that say “your child has a learning disability” or “he qualifies for special education services.”

So, the following things were identified and may represent the source behind the low math and oral reading comprehension scores:

Processing Speed Score (WISC IV): Borderline (lowest score)
Narrative Memory (NEPSY II): Borderline (second lowest score)

Behavioral Issues (based on the Behavioral Assessment Scale for Children 2):

Internalizing Problems – Clinically Significant
Attention Problems – At Risk
School Problems – At Risk
Behavioral Symptoms – At Risk & Clinically Significant

We have a meeting with the IEP team next week to go over what all of this means specifically for Jack. Until then, I will continue to google my little heart out to try to wrap my head around all of this. In addition, I was able to get in touch with a case manager from Kaiser’s Psych department who will attend the meeting with us and be an advocate for Jack. Thank goodness!

I am hopeful that many of these issues will fade away as the chemo leaves Jack’s body; however, it’s good to be prepared in case they don’t. And, of course, there are late effects that can pop up long after treatment is over, as well. Sigh.

For those of you who have IEPs for your children, what resources do you use to prepare for these meetings and help your child navigate areas of weakness? I would LOVE tips!

Save the Date with Minted

Note: This post is sponsored by Minted.

End of treatment is approaching for Jack and we have our eyes on the prize. We’re working on planning a few things in honor of this long, hard journey coming to an end, including a party to celebrate! We’ve have a few talks with Jack about it and so far he knows he wants to eat chicken on a skewer, mashed potatoes, and apple pie.

We’re a little food focused in this family.

He has a vision for making monsters that travel around on little motorized wheels, as well. I am not very mechanically inclined, so I’m going to leave that up to David to figure out! (Tag – you’re it, David!)

I get to work on the menu and invitations, mainly because I’m the mom and I didn’t ask for other volunteers.

This might come as a surprise to the other tech-savvy bloggers out there, but I’m a little bit old school and I LOVE paper. When I heard about the new Save the Dates at Minted, I got super excited. I already have some of their Mommy Calling Cards and the quality of the cardstock and printing can’t be beat; I get compliments on them all the time. So I hopped on over to their site to find something just right for Jack’s End of Treatment Party.

The problem is there are too many awesome choices!

Should we go with a British theme (for the Dr. Who lover)?

 LondonSaveTheDate

Or maybe something that showcases the sheer elation we feel to be DONE?

YesSaveTheDate

Or how about something with a photo to show off that handsome face?

PhotoSaveTheDateLuckily I get to play around on the site and personalize the different versions to help me make this decision. I may have to order a few different designs, though…

Disclosure: I received compensation from Minted in exchange for this post, but the content and opinions expressed here are my own. Please see my Disclosures page for more information on my sponsored content.