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Month: August 2016

To chemo or not to chemo….

August 24, 2016 Uncategorized

Aug 24, 2016 (Sara)

No chemo today…Maya did not make counts this morning. After a very pleasant visit to see all our favorites at the clinic, we are driving back home without chemo. Today was our first opportunity to start Interim Maintenance 2 (our favorite phase) which consists of a monthly lumbar puncture and chemo infusions every ten days. This phase is our favorite because Maya’s ANC actually recovered nicely during the first Interim Maintenance and we saw numbers that looked like a normal healthy kid! There is no scheduled oral medication aside from her multivitamin and vitamin D (and some bowel care to keep constipation at bay).

For some reason, this delay doesn’t feel near as bad or stressful as the previous delay…it’s amazing what experience can calm. Aside from scheduling around work and tying to find a good week to rent a house at Tahoe, this delay actually feels fine. We have an appointment to check labs again Friday. If she is at or above 750, we’ll move on ahead.

Our fingers are crossed for Maya’s buddy, Ethan, today. He and his family came to clinic this morning as well – today is his second check to start IM2. While today’s delay is not as tough as previous delays, there is something reassuring when our kids follow suit with the protocol. Maybe it’s safety in numbers…or, I suppose, research. I hope he’s recovered today and moving forward.

Maya’s ANC is 560. It was 470 nine days ago and then 520 seven days ago. The trend is definitely going up but who knows how long it will take to reach 750. Her other numbers are looking good. WBC are quite low but her Hgb and platelets look just fine.

Her energy is great and she is keeping us on our toes. She continues to thrive and with Delayed Intensification behind us…it’s hard to not feel a sense of ease creep back into our lives. This journey is far from over but the mountain that once looked like a burning volcano with no safe path to the other side…looks more like a ski lift up the face of Slide Mountain in a storm. Not that riding a ski lift during a storm isn’t scary…it’s just doable. We will buckle up, close our eyes, hug each other tight and…hold on for the ride. The chances are, we make it to the top and take a exhale…then ski down.

Moving forward sounds good but as we left the clinic today – Angela said “enjoy the next few days above 500”. And we will.

Love is life.

Fuzz

August 21, 2016 Uncategorized

Aug 21 932pm (Scott)

For the first time this summer a thunderstorm dumped giant desert rain drops on our neighborhood. We stood outside under cover of the entry way and watched as Lincoln repeatedly ran into the downpour, screamed with joy, and ducked back under cover. The kids were mesmerized by the thunder rolling across the foothills, and we all soaked in the sudden burst of humidity. Other than the funny bald head of a joyful three year old, this was just another ordinary, or maybe miraculous, summer afternoon.

We haven’t seen rain since the spring (when we saw quite a lot). It’s late August already and the summer’s end is getting close. Time has flown by; it’s been more than half a year since Maya’s diagnosis.

Today I looked across the table at her during lunchtime; the white cabinets behind her created enough contrast that suddenly I noticed new fuzz growing all over her head.
I said, “Maya, your hair is growing back.”
She took her time chewing her food and asked, “What color do you think it will be, daddy?”
“I hope it’s purple,” I said.
Maya looked thoughtful for a moment and said,
“I hope it’s blue.”

This whole thing is far, very far from over. And I suppose with the stress of delayed intensification I may now be slower to recognize such an undeniably hopeful sign as peach fuzz appearing on my little girl’s head. We told her it would happen eventually–we did that so she wouldn’t worry about her appearance. But I’m not sure I ever thought about convincing myself she’d grow hair again one day.

Maya is doing great. She’s strong, stubborn, and sometimes calm. She doesn’t doubt her own strength ever, and she doesn’t doubt the support she has in this fight. We are so thankful for the progress Maya has made, for her medical team, our family and friends, the anonymous champions, and, from everyone, the collective love of life that has sustained and propelled us.

Wednesday we go back to the clinic. If the labs are sufficient we’ll move on to interim maintenance II. This is a repeat of interim maintenance I, so we know what to expect. It’s still chemo, but it’s very nice to think about putting DI behind us.

Thank you all for your care, support, and love.

Playtime with Dr. Maya

August 17, 2016 Uncategorized

Aug 16, 2016   9:30pm (Sara)

While Maya’s labs are looking good and her energy level is better than should be expected at this point in treatment…I think watching Maya play doctor with her pediatrician today was the highlight of my week. Maya, Lincoln and I went to visit Dr. Papez for Lincoln’s 18 month wellness check. We really try to not take Maya out as much as possible to limit exposure to the community bugs but it just worked out that Maya needed to join us this time. It turned out to be a wonderful visit for all of us.

During our visit, Maya was able to hold Linco’s hand during his shot and she got to talk story to some new ears. Dr. Papez was very accommodating to Maya’s wishes of play time; this time Maya was the doctor as Dr. Papez became the patient. I’m actually not exactly sure who was more excited to play. She he even played doctor with the “real life doctering toy” which she talked about all the way home. She checked her patient’s eyes, ears, and heart as many times as possible. It was precious (I’m slightly devastated that I didn’t take any pictures). At some point, the kids were able to distract each other while the doctor and I talked about all sorts of things.

On our way home, Maya and I had pretty funny conversation.
Maya: “is doctor Papez your friend?”
Me: “ummmmm…I would call her my friend, yeah”
Maya: “how come we have never seen her out in the wild?”
Me: “bwahahahaha….did you just ask why we haven’t seen her in the wild?” I had to confirm what I thought she had said.
Maya: “yeah, how come?”
Me: “We haven’t hung out but one day we’ll see her out and about and you’ll know her”.
Maya: “I like her. I think she’s my friend too”.
One of these days we’ll actually get to have lunch (out in the wild) so we can talk with out a time limit. I suppose I’ll be busted if Maya isn’t invited. I’m so lucky to have a wonderful woman and mother as my children’s pediatrician. Thank you again.

As for the results of Lincoln’s appointment. He is hovering in the awesomeness that is the 99th percentile. I know that Linc has genes to be big (Scott is 6’7″) but really? How is he THIS big already? He most certainly has a blend of Scott’s length and my density. And he is awesome. My gentle giant and Maya’s King Kong. He’s doing great.

Maya continues to impress and amaze me. Her labs are stable and there has yet to be a need for transfusion.

Hgb: 8.9, Platelets: 245, WBC: 1.5, ANC 470.
We’ll check again on Thursday to make sure she isn’t dropping again. I am always concerned that we are “going in the right direction”. Good numbers should feel better…I just hope we dropped low enough to wipe out any leukemic cells that can sneak in. Because we don’t check labs every day, Maya may have bottomed out over the weekend – though the lowest we have seen was a white blood cell count of 0.9 (still not zero).

We love breaks in chemo. A day that does not include worrying about which medicine to give her and at what time is a good day. 7 more days like that till we start Interim Maintenance 2 in a week. As Maya heals (well really as we all heal) we have enjoyed visits with family, bubbles, splash pads and back yard baby pools, amazing peaches, and watching the Olympics. Both Maya and Lincoln are aspiring divers as they jump onto the couch from the ottoman. This is after Lincoln says “eddy, eeet, boop”…this is his version of “ready, set, sound effect for beep”. Our lives are still very fun – not something I thought was a possibility 6 months ago. 6 months. Wow. We are hoping for some lake time this weekend…and more healing.

Love is life.

Steadfast Dragon

August 11, 2016 Uncategorized

Aug 11, 2016   9:00am  (Sara)

Last night was Maya’s last 6TG (oral chemo) for this phase and today we made a quick trip to Renown to check Maya’s labs. At this point we needed to make sure Maya did not need any transfusions. And today she did not.

While Maya’s numbers are certainly dropping, she is holding on to her platelets nicely and her hemoglobin is hanging in there too. Her energy is slightly depleted but for the most part, her bald head is truly the only sign of being sick.

We had to say good bye to Grandma Bella today. We will definitely miss her around; mothers/grandmothers are amazing. It’s always nice to have visitors – I think even though the kids love me, we all spend a lot of time together. A change in face is sometimes needed to keep our sanity.

Speaking of visitors, we had a very random yet pleasant visitor today – his name is Tarvi and he is here in America with an exchange program from Estonia. He sells books. Last year the same company had a young lady stop by our home but I was neither interested nor had the time to sit and chat. Maya was in school and I was working a lot more. I felt Maya’s education and excitement about reading was heading in a direction that I was happy with. Last year I researched the company and have thought about what that young woman had to offer several times since.

Today, we met Tarvi. We hung out on the front porch and both Maya and Lincoln were extremely intrigued with our visitor and his thick accent. Tarvi was kind and knowledgable about his product. Buying books (or really anything other than girl scout cookies or boys scout popcorn) from someone who just shows up to my door is usually not on the list of things I do. But…things change and while I usually err on the side of caution (something my husband questions often), I’m very pleased with our new system of books. I think Maya and Lincoln will enjoy them for a long time.

I know it was difficult (practically impossible) for my mom to leave. We were waving good bye to her as Tarvi showed up. She was extremely nervous about leaving me and the kids with a stranger – and returned once to check on us – but she was finally comfortable enough to head over the hill. She’s a good mommy and reminds me that we never stop worrying.

We enjoyed our visitor – it was something unexpected and entertaining. I asked if he had a hard time with people not trusting him but he said our community seems to be filled with wonderful and open families that he is “lucky to meet”. I would like to think we are his new favorite since we gave him a bracelet. Maya offered Tarvi a Strong and Calm bracelet (about 40 times) and he jumped up to the moon. Truly, the delight on his face made my day. My week!

I think the point of this story is…there are still good people. And while it is hard to trust anyone…or any process…if we can’t see past our fear, we may miss out on an opportunity. My chemo kid needed a smile today and a stranger put it on her face. I am thankful for that (I suppose I am also this thankful he wasn’t a psycho).

Hemoglobin: 8.6
Platelets: 125
White blood cells: 0.9
ANC: 360

We are washing hands often and will be checking labs again Monday.
Love is life.
S

Exhale

August 7, 2016 Uncategorized

So far so good. We successfully completed three home infusions of ARA-C on the “Four-ison’s Chemo Kitchen Counter”. They went just fine. I think the hardest part was time management. Since my mom is in town this week (yay!) I have been able to take advantage of more flexibility at work so I worked both Thursday and Friday. It was fine except trying to manage giving Maya the Zofran “30 mins” before the chemo infusion PLUS getting everything set up and not rush the process…well it was a challenge but one that we overcame.

Saturday was a bit more sporty. At least it was for me. Things were going well and we didn’t have to rush anything so I suppose it was the perfect time to have a complication. The complication wasn’t terrible and Scott reinforced that we did just fine but it did end with both Maya and Mommy crying in an embrace….on the counter. Ugh, that damn sticker. The Brava adhesive remover spray works really well except it doesn’t work very well on the sticker stuck on other non-human parts such as the actual port access. We carefully removed the sticker from Maya’s sensitive skin but when we tried to completely take the sticker off (so I have a better pinch and hold of the part actually attached to the needle!) things got a bit crazy. It might have felt a bit more exaggerated in my mind than it actually was but still. I cried. I see the nurses just pull through the sticker but I have done this exactly two times prior and I have very little confidence in myself. Scott was kind and supportive and had every confidence that I could handle this but he could also hear the panic about to take over. I was breathing. I was trying to focus. I was trying to pull the sticker off the disc without some how dislodging the needle. But all I could think of is “there is a needle in my child’s chest slightly exposed to the air!!! This is Exactly what we don’t want for very long at all!! We need to get it out!” We were okay but things needed to happen. Quick.

Scott grabbed the scissors quickly and started to sterilize them. He cut slightly on either side of the part that I grab. I was pretty sure I could just pull it up at that point so I did. It was done.

Maya was crying mostly because of the sticker…and I suppose because of her parents all up in her space trying not to lose their minds. I just hugged her and cried because I was so scared but also that we were done with that. I am grateful that we could continue with therapy with out even a weekend delay and that we didn’t have to drive to Reno for a very quick chemo infusion…but I never want to do that again. 

Since her labs were actually pretty good on Wednesday, we won’t get her numbers again till this coming Wednesday. Her energy is amazing. She has no crazy bruising. I think we are okay. She might be a little bit more low key some days but over all, she is awesome. Sleeping has been our biggest issue…but seriously that is the story of her life. We started her on melatonin and…maybe it works a bit. Nothing like magic but I’m not even sure what that would look like.

The next couple of days we’ll just stay low. We anticipate a big drop but we actually have 2 more doses of oral chemo then a 2 week break. We’ll take it with whatever it brings. Drama or not. A giant exhale is in order. And perhaps some serious binge watching of the Olympics.

It has been sad to miss some pretty awesome events lately. Mostly weddings. Last weekend we had to miss my step-brother, Ryan’s wedding. My heart breaks to think that I could have been in the presence of both Ryan and Shaun at the same time. My world will feel like a better place when that actually happens. Also, congratulations to my awesome cousin Jeffery and his soon to be wife tomorrow! We love you and wish SO badly that we could join the celebration. Please know we’ll cheers some champagne for you tomorrow.

Till then USA USA USA. GO TEAM USA!
Love is Life.
s

Families

August 3, 2016 Uncategorized

Aug 3, 2016 10:14pm (Sara)

Option Care made one more delivery for us today. We hope this is the last we’ll need. In today’s package arrived three syringes full of ARA-C. They have found themselves a home in our garage fridge until we use them all over the next few days. In addition we got more heparin and saline flushes. It looks like they sent us more chemo gloves, masks, and bags for spills. We already have a sharps disposal bin as well as the chemo disposal bin so I’m happy they didn’t send us another one. Those have a nice home on the dryer…well away from any growing arms and curious fingers. We are all set to complete this week’s infusion.

Four more days of ARA-C and 6 more doses of oral chemo (6TG) for this phase. Then we get two weeks off. The “two weeks off” may or may not feel like a break but at least we won’t have to worry about infusing chemo into her port or convincing her that the “tootie fruity” flavored pink stuff is indeed medicine. She’s usually so good at taking meds but since this med has to be on an empty stomach…Maya usually fights it. As a dragon does, right? Ultimately, it isn’t too much of a battle but we all look forward to not having to do it for a while.

Today we got to see our friends at the clinic. We got to see Denise, Mary, Ty, Lucy, Jessie, even Patty. We got to hang out with Dr. Salo along with “pig” and “cow”….these are Dr. Salo’s little animal flashlights that make an “oink” and a “moo” when the doc is checking Maya’s mouth for sores. When Scott and I actually need to have a conversation with the Doc…she often hands Maya these flash lights and we get a solid 10 minutes to discuss. It’s genius really.

After Denise accessed Maya’s port (aka her Boodah button), we had a bit of a wait. Unfortunately the clinic was busier than I have ever seen it. Unfortunate for us in that we had to spend more time there than anticipated – and had not prepared for it really. I always burn myself when I think it will go quick. I didn’t pack substantial snacks or a lunch. I didn’t think to bring my breast pump (ugh). Scott missed meetings. I missed an appointment. Maya was grumpy…and we all left very hungry. But mostly it was unfortunate to see how many people are getting treatment right now. There were at least 3 little shiny bald heads running around playing in the play room. There were 3 or 4 other kids of all ages hooked up to noodle poles just getting chemo for brunch.

Then, of course, there were the families: moms, dads, siblings, friends. All of us trudging through this muddy day together. We do not know each other but we are all there together. We are fighting together. We might look distracted; we all stare at some sort of device. Some diligently working on lap tops trying to keep production alive among this chaos. Some playing video games on the play room Wii. Some glaring at their phone – at whatever distractions we all can find…to suspend our reality for even just a few minutes. Many breaking our gaze upon the phones or computers to see if anyone else would make eye contact. It’s not rare but eye contact is always intense while in the infusion clinic. We need some sort of salute to one another. A salute to each other. To recognize that we fight together. To help clear the fog and remind each other we are not alone. No matter if we are strangers. I see you. I feel your pain. I fear the worst with you and I ache for the best with you and for you. We all wish we could meet in some other realm in life but this is ours. So here we stand. We stand up. And we stand up together.

Speaking of families – it is always a pleasure to see our superstar, Victoria. And of course her mom, Iris, and brother, Marcus. What a wonderful and strong family. I’m SO pleased to say that Victoria has 7 days left of chemo infusion and on next Friday August 12th…she gets to go ring her “no more chemo” bell. As much as we’ll miss seeing her, I am thrilled for the whole family. For the world actually, that this young lady’s life is saved. She will do great things for this world and I’m beyond proud to know her. Congratulations to the Mathews family. Strong and calm never looked so good.

Motherly assessment: WBC: 1.8, Hgb: 9.5, Platelets: 285, ANC: 1000. Liver function: normal. Renal (kidney) function: normal. Electrolytes: normal.  Maya is good. I have told many people and perhaps I have eluded to this notion in past posts but…if Maya wasn’t so bald and I didn’t see a consistent drop in her white blood cells, I would think we were placed in some placebo-group in the study. Overall she is good. Not good, great. She runs, plays, climbs, and is killin’ it on the balance bike. She is learning and memorizing almost everything she hears. She is working on sight words (she can pick out Maya and Dragon in any sort of literature). She is adding: she (without being prompted) added 10 and 11 when talking about how many people we have in our family with Gramma Sandy. Yes she said “twenty one”. I don’t think I’ve seen Gramma Sandy’s eyes so big as when she was telling that story. Maya doesn’t seemed phased or changed at all. It is truly unbelievable. This next week might feel a bit more rough but The Red Devil has been on the losing side so far. While Maya the Dragon isn’t done with the battle yet, she most certainly has won most of the rounds in the ring. She’s about to make the Red Devil go running with his arrowhead tail between his legs. Thank you for helping to save my child’s life but…bugger off Red Devil.
Love is Life.
s