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.

Aural Update

Is that a word – aural? I’m not sure but it is amusing to me so I’m going with it.

In case you haven’t guessed (or you’re new here), this is in reference to my post Lions and Tigers and Auras, Oh My! I thought an update might be in order.

First, Jack spent a weekend with his dad and step-mom and during his time there, his step-mom asked him how long he’s been seeing colors around people. Jack’s answer was, “Since I got my new glasses.” And we all thought, AH HA!

I did some research and found out this is called chromatic aberration, or “color ghosting” around the edges of objects. It is much more common in polycarbonate lenses (which are generally what they give to children because they are more durable) that have stronger prescriptions. Some people don’t notice it, but Jack does. Apparently.

In addition to learning this valuable information, I met with Jack’s therapist and her supervisor – both to get my questions answered and get an update on Jack’s progress in therapy. We all agreed that Jack is an extra-empathetic and intuitive kid. We also agreed that he is in need of tools to help him learn how to distance himself from the emotions of those around him so that he doesn’t absorb them, which has caused him problems at school. He comes by this naturally – I deal with it, as well. This ‘ability’ has led me to refer to myself as a ‘mood sponge’ and it can be very difficult for me to differentiate between my own feelings and those of various highly emotional people I might spend time with and care about. It can be very confusing when I get depressed out of nowhere and have no clue as to why – and then it all becomes clear when a family member or friend that I’ve been around a lot admits they’ve been struggling with depression. Anyway, I haven’t done a great job of learning how to handle this, so it’s not something I can help Jack with. Jack’s therapist, however, can help him with that as part of their regular therapy.

Regarding the whole auras and Intuitive thing – the supervising therapist clarified that she had not been suggesting that Jack meet with an Intuitive – merely, it was a resource for me (and his other parents) if we wanted some additional guidance in understanding a highly empathetic child. None of that is part of the therapy he is getting from them; it’s just extra information that we can do with what we will. I expressed our general discomfort with that route and let both therapists know that we’d like to focus on the typical therapeutic methods of helping Jack to learn to put up boundaries, which they are more than happy to do. Whew.

I didn’t bother arguing that I don’t think Jack can actually see auras or explaining about the chromatic aberration thing. Essentially, the whys of his empathetic nature aren’t so important to me – I don’t think we can really know why he is the way he is. What is really important is that he learns how to utilize his empathy to his own benefit instead of being constantly exhausted by the emotions of others around him.

Hopefully I can learn that, too! It would sure make my life easier.

Last but not least, THANK YOU to everyone who provided input on my post. It was very helpful to hear a variety of perspectives on this subject. I really appreciate it. My friend Jana recommended I get the book The Highly Intuitive Child: A Guide to Understanding and Parenting Unusually Sensitive and Empathic Children (that’s an affiliate link). I’ve started reading through it and so far it’s RIGHT ON. So if you’ve noticed your own child seems extra sensitive to the world around him/her and you’re looking for some parenting tips, go check it out!