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.

So Many Appointments

Jack has so many appointments. ALL THE TIME. Chemotherapy is only part of cancer treatment – there are a lot of extras that come along with it. Bonuses, if you will. (Ha!)

This is a snapshot of Jack’s January appointments – minus the things I’ve pushed off into next month, like the one that checks that his spinal fluid pressure isn’t damaging his optic nerve or the echocardiogram to measure organ damage from 3 years of chemo. It also doesn’t include the learning and psychological assessments he’s had at school this month.

January 2 – Ultrasound to check for damage to veins from Broviac catheter (looks good! whew!)

January 9 – Therapy

January 12 – Pediatrician due to dizziness, fatigue, headaches, nausea (inconclusive!)

January 15 – Lab draw (to hopefully explain dizziness, fatigue, headaches, nausea)

January 16 – Breathing treatment

January 20 – Lumbar puncture, oncologist exam, chemotherapy infusion

January 21 – Eye exam

January 22 – Dental cleaning (if his platelets and white blood cell counts are high enough)

January 23 – Therapy

January 27 – ADHD Assessment

As you can see, the longest stretch we’ve gone without making a trip to Kaiser was 7 days. BUT! Add on Desmond’s well-child check (January 5) and that stretch disappears.

I think we might spend more time at Kaiser than at home.

Write a Letter to Santa and Help Wish Kids!

Between November 7 – December 24, visit your local Macy’s store or Macy’s Believe online to submit your child’s letter to Santa and help make dreams come true for Make-A-Wish kids around the country. For every letter received through December 24, Macy’s will donate $1 to Make-A-Wish (up to $1,000,000).

Jack LOVES the idea of Santa. In prior years he has written Santa several letters, made him cards, even even built a shrine in his room. At eight years old, it seems that he might be starting to waiver in his devotion and questioning a bit more, but still – he wrote a letter to Santa this year, asking for a haunted house and asking that Santa respond if he got the message. He included his very own “return receipt,” which was a drawing of some toys and dashed lines to indicate where to cut.

LettertoSanta

Santa dutifully responded and Jack was beyond excited. He just knows Santa will come through for him.

David and I set to work looking for a toy haunted house. We didn’t find much, but we didn’t want Jack to feel let down by Santa, especially on the last year he’s likely to believe in him. So we bought a dollhouse and developed a plan to paint it, sand it, and turn it into something haunted. I was also able to find a “monster bucket” on (post-Halloween) sale so that should help us haunt the place up.

This may seem like a lot of effort, but Santa is just one small thing that adds magic to Jack’s life amid all the hardship he endures due to Leukemia. Make-a-Wish helped in this effort this summer, as well, when Jack was granted his wish for a TARDIS bedroom makeover. Jack is still delighted by his room and with the granting of his wish, we saw a happiness in him that we haven’t seen in a long time.

He's in love.

He’s in love.

This holiday season Macy’s is helping to bring magic to more kids with their Believe Campaign by working with the Make-a-Wish Foundation! This year marks the seventh year of Macy’s Believe campaign, which invites believers of all ages to drop off letters to Santa at any Macy’s store by depositing them in special, designated Santa Mail letterboxes. You may also submit your letter online at Macys.com/believe.

For each letter received by December 24th, Macy’s will donate $1 to Make-A-Wish, up to $1 million, to grant the wishes of children (like Jack!) with life-threatening medical conditions. Last year, Make-A-Wish granted the wishes of more than 14,000 children across the United States. A wish is granted every 38 minutes!

Here in the Bay Area, Make-A-Wish is working on granting the wish of 4-year-old Joysse, a girl from San Mateo who was diagnosed with Leukemia. For her one true wish, Joysse asked for a princess party complete with purple and pink decorations, a princess dress with a cape and crown, cake and ice cream and more! She is so excited that she asks her mom, Gabriela, about it every day. Her party is scheduled for January, but as a surprise, Macy’s will be helping her prepare for her wish with a very special celebration at the San Francisco Union Square location.

To help kids like Jack and Joysse this year, make a trip to Macy’s or visit them online to submit your child’s letter to Santa. It’s totally free for you and yet you will get the satisfaction of knowing you’ve helped bring some magic back to the life of a child with a life-threatening illness!

stockings

I was selected for this opportunity as a member of Clever Girls and the content and opinions expressed here are all my own.

Kids Notes

I have had so little time to write. It sucks. I need to write. I am much happier when I have been writing.

That’s not to say that I haven’t been happy – I’ve been surprisingly free of baby blues and depression! But how long can I maintain good mental health without participating in something I know keeps me sane?

Anyhoo…here we go with a mad-dash post typed with one hand.

Notes on baby Dez

Dez is a very good baby thus far. Although he absolutely hates getting his diaper changed and wails every time. I think we owe our neighbors some wine for putting up with it. So far I’m not too sleep deprived, but I bet that will change when he wakes up to the world more. And when I go back to work (sob).

David gave Dez his first bottle last week. He took it just fine and then went back to nursing with no problems. Yay for Comotomo bottles!

I got my first smile out of the little guy yesterday when I stuck my tongue out at him. It was awesome! After 5 weeks of nothing but naps and nursing and diapers…finally some interaction!

I’ve been struggling with oversupply again. My body continues to think I should be feeding triplets. This means Dez is gaining weight like crazy and going through zillions of diapers. The cool part of oversupply is that I can pump 3.5 oz. in 5 minutes – on one side. There are lots of cons, though – green poop, gas, choking during letdown, more frequent nursing, so many diapers!!! I am managing better than last time since I know what I’m doing but it’s still frustrating. At least Dez is dealing with it much better than Jack did – maybe because it’s not quite as bad as last time.

At 9 days old, Desmond rolled from his tummy to his back…several times. And he has repeated that performance pretty much daily. He can also go from his back to his side…it’s only a matter of time before he can roll both ways. I fear the toddler years, which will likely come sooner than I would like!

It took a good 3 weeks for his umbilical stump to come off and the area still hasn’t healed so it will need to be treated with silver nitrite. The same thing happened with Jack. I don’t know what’s up with my kids’ belly buttons!

I’m slowly searching for a daycare provider to send Dez to when I return to work in December. It’s a stressful task, to say the least. I’m taking it slow so that I don’t go into a panic and decide to quit my job so that I don’t have to leave my precious baby with a stranger. I thought it’d be easier the second time around but nope! I hope we find a good one right off the bat so that we don’t have to go through everything we went through with finding good care for Jack.

Notes on Jack

Jack is a great big brother. He fetches all kinds of things for me and the baby and always tries to distract the baby during those torturous diaper changes. He’s been good at keeping himself busy when I can’t put the baby down. I’m so thankful we still have our reading and snuggle time together before he goes to sleep so that we can still connect.

He’s generally been in better health and made it to school most days this year. Just a bit over 5 months of treatment left!

We met with his new teacher and found out that he is behind where he should be for a third grader. The things the teacher has noticed are in line with what we’ve seen at home and are common learning problem areas for kids who’ve undergone chemotherapy. We asked his teacher to document anything she sees and we’re going to (again) seek an IEP evaluation – and this time we won’t back down. We’ll be in a better position to argue for the testing now that Jack has been going to school regularly and his teacher is actually noticing his difficulties.

He’s been struggling with his friendships at school. He is so upset when his best friend doesn’t want to play with him and says other kids don’t understand the imagination games he likes to play. I wish I knew how to help him. I had similar issues as a kid but I don’t remember being quite so upset by it. Jack is just so sensitive.

I’ve been very surprised that lately he’s talking more about cancer, too. He found a game in the app store that is all about destroying cancer cells and he loves it! He’s also been drawing blood cells and he found a plush cancer cell on amazon. It’s a little unnerving that he is suddenly so focused on it, but I also think it’s good that he is talking about it. Maybe therapy has helped?

 

Alright, I’d better post this before it self-destructs. More soon, I hope.