on learning your child has cancer ...

I learned this morning that the 10-year-old daughter of friends of ours has been diagnosed with Leukemia, discovered after she had some routine bloodwork done yesterday. No family ever deserves news like this - but these folks have had more than their share of heartache in their years together. That's not my story to tell, but my heart has been heavy for B and her family today as they are walking the same hallways and having conversations with the same team of doctors as we did nearly 7 months ago. I told B's mom and dad today that on the day of our diagnosis, I could not fathom ever being at the place where we are now in Jax's treatment. But here we are. No one knows what each family's cancer journey will look like, but I know that this family is well equipped and abundantly supported as they enter these deep waters.  Please pray for B. She also has Down Syndrome, which adds an extra element of complication to her treatment and support. Pray for her mom and dad as they care for B, her two older sisters, and newly adopted toddler brother, who also has special needs that require a tremendous amount of daily care and support.
B's Mom Christie blogs at So Here's Us.

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I edited this post to share about Miss B. 

Original post below.

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I came across this blog by a fellow oncology mom ... 

As if dealing with a special needs child with cancer, she watches for rockets to fall on her vehicle as she drives him to his appointments.

Have a look at her blog.

I found this incredible description of the day her son was diagnosed with Leukemia:

"And the water rushed all around me

and sucked all the air out of the room."

I am sure that this feeling is shared by other parents of children with life changing, life threatening diagnoses. It is understood by anyone who hears devastating news about a loved one, no matter what age or stage of life.

onward!

As we hoped, Jaxon passed his blood test on Tuesday last week, and we were able to start the next round of his treatment protocol. He needed a minimum of .75 ANC and he gave us .93! Platelets needed to be 75 and they're hovering nicely around 400.

Interim Maintenance 2 (IM2)
• IT (Intrathecal = into spinal fluid via sedated lumbar puncture) Methotrexate - Days 1 & 31.
These will be LP #s 10 and 11. Each time he gets IT chemo, a sample of his spinal fluid is collected and checked for leukemic cells. These have always come back clear.

• IV Vincristine & Methotrexate - Days 1, 11, 21, 31, 41

• Septra (oral tablet via jelly bean) 2x daily every Fri/Sat/Sun

IM2 is the final phase in his "frontline" treatment, before Long Term Maintenance begins in Mid-December. With the conclusion of Delayed Intensification, we hope and pray the most gruelling phases are now behind us. We must still be ever vigilant to watch for any signs that his body is not handling the chemo well, or for illness. Paul had a cold for well over a week, and it passed on to Max and Oma. Marty and Jax had a slight cold, but nothing too terrible. It hit me the past few days and I feel a bit run down but not suffering badly. I was worried about passing it on to Jaxon until I realized that he probably gave it to me! I'll call the clinic tomorrow and see if they want me to take any extra precautions, though I feel it's a non-issue as he would have already been exposed to my germs before I had any symptoms.

Nurse Clinician Anne, Dr. Ewa, Nurse Barb
"Checking chemo".  The chemo gets hand delivered from the pharmacy to the Oncology treatment room in that red tackle box. Then one nurse checks it with another nurse to confirm the patient's name, ID #, what the medicine is, how much medicine it is, when the medicine expires, and how
it is to be administered. If in agreement, the nurse presents the medicine to the Dr. prior to administering. The nurse also verifies all the same information with the parent/caregiver.

Super Jax strikes again!
Many thanks to Jaxon's friend Tatum and my friend Becky for this super cool, one of a kind toque! 

Speaking of super cool and one of a kind ...
Thanks so much to my Mama for making these!

And if matching fish hats isn't enough ...
We love our new cozy blankies! I have one too, each of us with a different colour. 

Funny boy ... he came out of his room about half an hour ago and we quickly realized he was still asleep! He didn't really answer our questions and seemed really dazed. He came to snuggle with me but started wimpering and giving obvious "have to pee" cues. I asked him if he had to and he nodded. I told him to go! He hopped down and went straight into the other bedroom. I redirected him and scooped him up onto the loo. On the way there and while he did the deed, he was giggling uncontrollably. I guess he thought it was pretty funny that he went to the bedroom, looking for the toilet. He declined any drinks of water and went straight back to bed. 

DI - Day FIFTY-SIX!!!

We've known all along that this would be no walk in the park. No cake walking here. A whole lot of really crummy things that we had no choice but to allow/force our boy to go through. We have had to make his life really miserable for a lot of these past six months ... to save his life. We don't dwell on the life-saving part with him (at all). We talk about how we need to do these hard things, there will be sad days, we need to keep on doing what we need to do ... to make sure the cancer goes away and doesn't come back.

Treatment for Leukemia is complicated and extends over several years. 2 years for girls, 3 years for boys. You can guess about the extra bits that boys have that requires them to have an extra year of treatment. Around here they've been called nuggets, tenders, and today ... batteries.

Remember the Roadmaps? Here and here. (See the blurb in my side bar for a quick refresher on the six stages of treatment for A.L.L.) We've been plugging away through the first few stages, with the daunting and aptly named "Delayed Intensification" looming just beyond. It's known to be a difficult phase because of the myriad of chemo drugs that are used, and how they affect the unhealthy and also healthy cells in the body. Each drug used in DI focusses on a the varying stages of cell growth.  It was indeed quite gruelling with lots of appointments either to receive chemo or to check his blood work to see how the chemo was affecting him. He was often nauseous and the thought of one more poke in the arm or in his "button" is starting to send him running to hide. This stage was the one that we officially said "see you later" to his hair. We have been on edge, watching for fever and other signs of illness the most this phase, because he's had low counts for several weeks, and they could stay low for another few weeks.

And now? Apart for waiting for his counts to climb back up, it's over! DI is behind us! His hair is growing in again and his energy is almost boundless. He plays tricks on our clinic nurses and he's chomping his weekend meds like it's candy. (Only because I have embedded it in candy!) He still doesn't like to do it but he's much more compliant than in previous weeks.

Two of drugs he received in weeks 1-5 of DI are known to have a double-whammy punch on his counts, particularly ANC (immunity) and Hemoglobin (oxygen couriers) and Platelets (stop the bleeding!) His counts on Monday the 6th were strong enough that our team agreed we could get his blood work checked in Duncan to make sure he was good going into the long weekend.

He received his last dose of ARAC on September 25. His counts could take up to 28 days following that dose to fully recover. Here's the rundown of his counts the past few weeks:

Sept 29:
ANC 0.23
HGB 80
PLTs 77
*Red blood cell transfusion, please and thanks!*

Oct 3:
ANC 0.15
HGB 112
PLTS 60

Oct 6:
ANC 0.40
HGB 101
PLTs 200

Oct 10:
ANC 0.33
HGB 109
PLTs 407 *!*

He is scheduled to begin Interim Maintenance 2 on Tuesday of this week. It will only begin if his ANC is equal to or greater than 0.75 and platelets are above 75. PLTs look like they'll be alright, but not sure about the ANC. He was fighting a slight cold at the time of that blood work, which would lower his ANC. I think. We will plan for the start of IM2 on Tuesday, but are prepared that he may have a delay of a week or even two while his ANC fully recovers.

I found it a bit humorous to receive a call from our family doctor's office on Friday, but since our Dr. is away, it was a locum who called. He was calling to tell me that he had reviewed the results for Jaxon's bloodwork and that his Absolute Neutrophil Count was critically low, and did I understand the ramifications of this and the precautions I needed to take? I assured him that I had already discussed the results with our Nurse Clinician in Victoria and that we are well prepared in the even that Jaxon should strike a fever.

Thanksgiving

While we reflect and celebrate how far we've come since the devastating news of Jaxon's diagnosis, we are also keenly more aware now than ever, about the tragedies many families are facing. Each childhood cancer experience is different for different kids and their families. Some have more optimistic diagnostic outcomes than others. We got one of the good ones. It's still really terrible for us but it could be oh so very much worse. 

My friend Pam (mom to Audrey) wrote these words this weekend, and I want to share (with permission) as it's such an important reminder.

"Thanksgiving Weekend ... while I won't be diminishing the blessings we are so thankful for, others will be on my heart and mind this weekend. Please think of and pray for families who have learned devastating news in the past couple of weeks. Pray for those facing the loss of a child. Pray for those who have received new diagnoses. Pray for those who are experiencing a first Thanksgiving without a child.

 Love to all who this applies to ...  you are not forgotten. ♡"

Sole Sisters Victoria

There is a group of about 100 ladies who gather together in Victoria on most Tuesday nights. They call themselves the Sole Sisters. Click the link to see a video (from 2011) about the main goal of the group. Another part of what they do is something called Quarters for Cubs. Each week, every lady who attends the running clinic brings a quarter for the Cub Jar. Well guess who was chosen to be the Cub for their most recent 17-week clinic? Mr. Jaxon!

Mena, the director of Sole Sisters, is the mom of four boys. Her third boy, Jack, was diagnosed with ALL at the same age as our Jaxon. Her Jack finished his treatment 2 years ago (he's now about 10 years old.) Because of Mena's connection with the Pediatric Oncology program at Victoria General, she hears about other families facing similar circumstances. That's how she heard about our family.

Mena texted me on Friday of the week before last to say that she hoped we could make it to the beginning part of their Sole Sisters gathering on the following Tuesday (Oct. 7). All I could think of at that point was that I would already be making 4 trips in 2 weeks to Victoria for Jaxon's blood work checks, and adding in another drive down seemed daunting. She insisted that we do our very best to be there. Honestly, I thought they had a lot longer to go with their running clinic and it wasn't time for any special presentation to little Cub, Jaxon. She was really persistent, so I said we'd be there. Paul agreed to come down with us, and Marty eventually decided to come as well, despite the LOOOOONG drive to get there. Small town kids - spoiled by short drives to get to where we need to go. Max stayed behind with Oma.

We found our way to the gym where they meet, and sat off the the side, doing our best to keep an imaginary bubble around Jax to protect him from germs. His ANC was really really low so we had to be extra careful. 

I soon realized that this was the final night of this particular running clinic, and we were there to collect some cash! Mena gave a very sweet introduction, and then another lady who was also collecting Quarters for Cubs gave a presentation as well. She has a small fit club that meets elsewhere, but still wanted to contribute. She shared a very moving story about why she does it, and presented us with about $100. Mena then announced that the 100-ish ladies had collected, raised, donated ... $1100 in 17 weeks! She then added the cash that had been given that evening - over $100. There was not just quarters in that bucket, let me tell you! Loonies, toonies, 5s, 10s, 20s. In total, we were blessed with $1353.99. What a gift! They even gave me a hot pink Sole Sisters tank top. Woop woop! A nice surprise was meeting two ladies who have connections to Imadene! They both knew who we were and came to chat with us. I recognized them both but had not met them officially until then.

I posted this thank-you note on the Sole Sisters facebook page:

Thank you all so very much for your contributions to the Quarters for Cubs, and for focusing your thoughts on Jaxon's battle with Leukemia as you gather each week to walk and run. Our family has been incredibly supported through these past 6 months, and your kindness to us over these weeks has added to that blessing. We are honoured to have had this special role in your "tribe". I love what you are doing together and for families like ours, and I really do wish there was a group like this closer to where I live! What a gift! Again, many many thanks.

#CCAM {Childhood Cancer Awareness Month}

One last post about Childhood Cancer Awareness Month ... it's an easy read. Much of what the author describes is similar to our experience with Jaxon's diagnosis. Our Dr. also had tears in her eyes as she told us the results of his blood and bone marrow biopsy and we joined the "club" that no one wants to be a part of. Despite not wanting to be "one of them", I'm so thankful for the other kids and their families who we have met along the way. Our lives are richer because of them.

Don't just feel sorry for us ... help us fight this thing and its effects on the lives of these precious kids!

Give of your time, finances, a meal, your hair, your blood.

How To Help (article)

Local organizations that help families facing childhood cancer include:

Balding for Dollars - an extension and direct supporter of the Oncology Program and Patients at BCCH. My dear friend Charis and I put together a little fundraiser by selling Jamberry Nails and with the help of several other friends, raised $100 for Balding for Dollars. Thank you Charis, and the rest of the ladies for making that happen!

Ronald McDonald House BC - our home away from home when we need to travel to BCCH.

Jeneece Place! - our frequently visited home away from home. The staff tell me we don't feel like guests anymore, it's that kind of a homey feeling for us. Jax and I are looking forward to Thanksgiving dinner tomorrow (Monday) with Jeneece and her family. We'll be there overnight as he has an early morning appointment on Tuesday that he has to fast for. Early mornings are hard enough, even worse to have to drive all that way on and empty tummy.

six months

In my mind I think about Diagnosis Day as Four-Ten-Fourteen. That was almost the name of this blog. I have a music playlist by that name instead.

April 10, 2014.

6 months ago today. I could never, not ever, have imagined what my little boy, our family (immediate and extended), and our friends (old and new) would experience together over these past six months. Thank you, thank you so much - to all who have supported us through this in innumerable ways. Our lives are richer because of you. xo

Paul wrote some thoughts about another significant April 10th in his life. 
Do read it.

Nailed it!

This high flyer is doing great! 

His immunity is still low but his energy is not low or lacking!

Hard to believe he's just completed 

the second most gruelling 

phase of his treatment.