Becoming A “Cancer Mom”

maxdiagnosis



Friday, August 12th — Week 1

Shunt — CT scan revealed that Max is still retaining too much water. The shunt is still in and the pressure is monitored constantly. Once the shunt is removed we’re hoping for a wagon ride.

Pathology — no news

Other — Max vomited again this morning (third morning in a row). The brain stem controls nausea, so it may be related. We’ll ask Dr. Loudon today. May is back on maintenance fluids because he’s not eating and drinking quite enough. His little arms and hands are tired from being poked with needles.

Can’t believe it’s been a week.


By Aug 14, 2011 12:47am

We’re still in the PICU.  Max came down with a fever that’s responding to tylenol.  Blood was taken to see if he has an infection.

Max gets the port installed tomorrow.  7:30am surgery.  He’ll have to go under anesthesia again which will continue to stop up his system.

From the PICU we’ll most likely be transferred to the neurosurgery unit, just because they know how to treat and respond to issues that result from such surgeries.  Any immediate issues for Max will come from the surgery, shunt, and hydrocephalus, not the tumor itself.

Justin spoke with Max’s neurosurgeon, Dr. Loudon, about the issues with the pathology and diagnosis.  The tumor Max has does not look or behave exactly what he was diagnosed with, but the pathologist who worked on this and made the decision is the best in the country.  It may be the case that Max’s tumor is extremely rare and therefore is somewhat similar to what he was diagnosed with, but is different enough.  In any case, Dr. Loudon said that it may cause more confusion to send out for a second opinion but he would nonetheless, just in case something significant to Max’s treatment plan is found.


SuperMax, sitting up for the first time on his own:


By Aug 14, 2011 11:06am

Max just went into the OR to have the port installed. The surgery takes about an hour. He’s tired of the trauma and of the poking. When hospital staff approach him now, Max exclaims “don’t hurt me” over and over again.

Hopefully we’ll be moved out if the ICU this afternoon.


Max’s surgery is complete. The surgeon said that it went very well. Once we return to the room my plan is to bathe Max since he smells like cheese. That’s what no bath for over a week will do to a little boy! He’ll still be recovering from anesthesia, so it’ll be good to get him while he’s sedated.


By Aug 15, 2011 2:06pm

Max attacked the issue of going #2 last night between 12:00 and 4:00am. Mommy was up holding his hand the whole time. What a champ. It was excruciating, even with the various aides he was given. With every push his heart rate would go as high as 250, and eventually back down to 112. Crazy. In the process he challenged that water (intercranial pressure) in his head and he began to leak through the stitches where the shunt used to be. He was stitched up again this morning and the leaking or what may become ballooning, will be monitored. He’ll go in for another CT scan tomorrow morning and, if he’s not processing the water well enough, he may need a permanent shunt after all.

One step forward and another back…

Max is happy through all of this. We’ll try to get sitting up again today.


Max had a big day today. Dr. Loudon’s neurosurgical partner came by and said that his main surgery incision site (he has two) looked great today. This is awesome news because if it didn’t look good — if it was still swollen — we may have to send him in for a small surgery to further assist with CSF drainage. We’ll know on Sunday if he’s draining well.

Because of this swelling Max is on a steroid (decadron) that gives him an enormous appetite as well as bouts of ‘roid rage (extreme irritability).

Max complained that he lost his eyesight today. Within about five minutes he returned to normal but, for that short time, he really could not focus his eyes and it was pretty scary. Neurosurgery told us and everyone else to keep watch, but there are a variety of normal explanations (drugs, the bright lights at the time).

Matt, our night nurse, is just the best. He’s so technically proficient, sweet, empathetic, and generous with his time. Max loves him. Matt’s been telling us a lot about cancer as well as the treatment and we’ve been transforming this information into a positive narrative for Max. The port he has in his chest represents the infusion that boosts Max’s superpowers so he can send little good guys to fight the little bad guys. Small victories every day and small set-backs along the way will all lead to the biggest victory — remission! As Matt told us, the third floor is the most hopeful at CHOC.


By Aug 21, 2011 12:08am

Max had a good day today. Still irritable, but coming off of the steroids. We’re excited to get past the roid rage! He’s still eating like a teenager.

Max’s head is looking good. Our main goal for the next few days is to get him moving. His chest is a little congested, so we really need to get moving to avoid pneumonia. The plan is still to start chemotherapy on Friday. I don’t know if we’ll be home yet but, especially for Maesie’s sake, I hope we are.


By Aug 24, 2011 4:20pm

Max has had some big days at home. He can now take a few steps on his own, though is largely still unable to walk without holding someone’s hand. We encourage Max to make his way around by crawling but his left arm is still somewhat unresponsive. He started exercising and challenging his left arm, which is great. He can see that he plays a vital role in getting back in shape. I can tell that it’s confusing to him to try to use it only for his hand and fingers to not respond as expected.

Max suffers from some soreness and headaches at the main incision site. He’s really trying to sit upright while he plays and watches his favorite movie, Monsters VS Aliens. We have to ask him to rest his head regularly. He’ll start a regular regime of PT, OT, and speech therapy at CHOC next week.

Max is responding really well to the some of the stories we created to help him understand what’s going on. He’s making his own diet choices that correspond to the story. He’s asking for veggies, rejecting chocolate milk (yay!), and munching on seaweed (green chips, as we call them). He likes to compete with his sister and, since she enjoys veggies more than he does, she challenges him in her own little way to eat the good stuff that gives his ‘good guys’ superpowers. Slowly we’re making our way to a very healthy diet, specially designed to fight the bad guys who are trying to build a house or fort in Max’s head.

As a family we’re trying to create our ‘new normal’ which includes getting good 1:1 time with Maesie, taking her to school, going to many appointments, and figuring out how we’re going to eat to enhance superpowers as a family.

We’re continually blown away by the amazing things our friends and Max’s community do to support us. From CaringBridge and text messages, to cards and donations, meals, and food, we’re overwhelmed by your kindness, generosity, and love. Our family, my generous colleagues at Saddleback College, Justin’s at UCLA, our community at Aldersgate, and our friends both new and from back in the day — we are so, so grateful for every prayer, kind word, and generous gesture. All of this supports Max’s battle and, as he likes to say, it is a winning game!


By Aug 26, 2011 4:53pm

We’re at the CHOC Outpatient Infusion Center part way through Max’s first round of chemotherapy. His nurse, Dana, is amazing as is the Child Life Specialist who helped him get through the Port poke. He’s now hanging out eating carrots and watching Garfield. Max always has giggles to share and his sense of humor brings joy to the most difficult of situations.

We met with a nurse case manager today (we have two, one from the oncology team and another who interacts with the insurance company) who introduced us to the tricky world of authorizations, co-pays, and bills. Since Max needs so many auxiliary therapies and prescriptions, she referred us to agencies and organizations that may be able to assist with these weekly co-pays. It’s good to have some realistic assistance with navigating the insurance world. It’s a bit disheartening to have to deal with a system that doesn’t want to finance our son’s care to the extent that he needs, and we have good insurance! I can’t imagine what it would be like to be underinsured.

I also want to mention how grateful I am not to be at work now. A huge thank you goes to my district, colleagues, and friends. I have no idea how folks do this who have to go to work regularly. Justin is teaching three days a week and djing three nights per week, and that’s all we can handle right now. I actually can’t wait to go back to work because that will mean we are in a better, more stable place.


By Sep 1, 2011 12:46am

Appointments and insurance — The hospital bill to the insurance company just came in. It’s over $323,000, and doesn’t include our transition into oncology. Over $30k for one MRI! Wow.We’ve been working for a week now to get the MRI for Max that Dr. Loudon ordered for this week. Very frustrating. First the authorization. A third party company does that. Someone at a desk for some no-name company decides whether a four year old brain cancer patient should really have the MRI that his neurosurgeon ordered. Really?? As my sis-in-law said to me, if a kid has a neurosurgeon in the first place the MRI should be an automatic yes. Three business days and one weekend later the MRI, which will tell us about the tumor Max is destroying, as well as the hydrocephalus issue, is authorized and I need to call the hospital’s outpatient radiology center. Their scheduling system is down for two days (two days!) so, when we finally get through, they lost the order from the doctor. Maybe tomorrow we’ll finally get to schedule this.Meanwhile CHOC’s rehab outpatient facility is so impacted that Max can’t get his speech evaluation for another two weeks and the next PT appointment isn’t available until mid-October! They’ll try to squeeze him in earlier, but we may need to get referred elsewhere.Chinese medicine starts next week and hopefully karate for kids with special needs, headed by on occupational therapist, will start soon too.

Max’s first outpatient ‘labs’ draw will be tomorrow. We’ll try leaving the needle in the port for Friday’s chemotherapy. If Max doesn’t do well with that, we’ll push for the needle to be removed in between labs and infusion days.

Diet —
It’s all about encouraging Max to eat as well as maintaining a higher calorie level. Good fats are good for him. We’ve moved away from some of the more processed things he used to eat, even if they were organic. Max loves (organic) eggs, chicken, tofu, milk, yogurt, cheese, green beans, cukes, broccoli, peppers, carrots, mango, banana, apples, pineapple (dessert), peaches, strawberries, cantaloupe, brown sprouted rice, buckwheat noodles, homemade apple juice, salmon, no sugar ice-cream, and roasted seaweed.

We are not on a raw or vegan diet. We’ve weighed many options and, at this point in his growth and recovery and considering what he’ll actually eat, it’s best that we eradicate inflammatory foods, including stuff “C” cells like, such as sugar and wheat flour. Whole grains, raw or lightly blanched veggies, raw/whole fruits, organic eggs and dairy, as well as other good fats and proteins are what Max needs to thrive and beat this thing. Processed flours, sugars, and non-organic foods all contain stuff that many of us can handle to some degree, but a kid prone to “C” can’t. As you can see by my short list, Max is not the most adventurous fruit and veggie eater, so we need to maximize what he does like and slowly introduce him to new things.

One thing we learned is that Max can’t have any supplements now. Anti-oxidants as well as omega-3’s, in the high concentrations found in supplements, actually work against chemotherapy in a variety of ways. He should eat items with these things, but can’t currently ingest the high doses found in supplements.

Once Max is through this we know that he’s prone to “C” and therefore will continue to progress into healthier and healthier ways of eating as well as working with alternative medicine specialists and healers. This is a lifelong endeavor for Max, as it will be for all of us.

Rehab —
Max had had just a few play dates recently and has done so well. He seems to forget about the things that preoccupy him with walking and using his left arm when playing with friends especially. It’s amazing to see! He’s the same little guy in so many ways.

He’s also taken the opportunity to tell his friends his story and show his head scars. He really seems to like to tell the story of the bad guy vs good guys. It’s awesome to see him change up the narrative and really make it his own.

Max has an awesome sense of humor. He has so much fun each day with the littlest things, the tiniest jokes. He has such a strong spirit, in spite of himself sometimes. It’s inspiring to see this little guy, going through things most of us can’t even imagine, finding every opportunity to laugh and have fun. The urge to play is so deep!! I’m uplifted by him every day. Max keeps me going, positive, and happy to greet each new day we have together. I know it’ll be a lifetime of these days, each one with bright little moments, and someday he’ll be there caring for and taking me to physical therapy or whatever.

Maesie is jumping into her green beans like it’s no one’s business! She craves time with Max every day, and he loves to spend time with her. Then they fight and yell as Maesie swipes a toy and pulls Max’s hair. He cries, but it’s a normal cry over pulled hair, and we just love that.


By Sep 8, 2011 1:15am

Tuesday Max saw his “magic” doctor, Ruth McCarty. Dr. Ruth practices Chinese medicine. Most of the CHOC Neuro-Oncology kids see her. He’ll get to meet and hang out with these kids on a regular basis, which is awesome. Dr. Ruth gave Max “cat whiskers” on his forehead (she actually has tiny needles for kids) to help stimulate his brain recovery. She then gave him a foot massage (I’m jealous!) and burned an herb on his knees to promote immune health. The point of this medicine to to keep Max strong and healing through treatment. We’ll go every week.

This morning we were supposed to go to Max’s first outpatient physical therapy appointment. We were excited because he’s made such great strides since leaving the hospital and we thought his cute PT therapist would be proud. He was excited to see her. Unfortunately our new car (3000 miles) wouldn’t leave the driveway! Chevy has great roadside assistance so we were covered with that. We are in a rental now that the dealer is paying for because the car needs a new transmission. Yikes! The car fortunately broke gown in our driveway.

Because of the car fiasco we lost a very hard to get PT appointment and I missed the Angels game because I had to pick up the car rental and then Maesie. Justin took Max to the game along with his aunt, uncle, and cousin. In the attached picture you’ll see Max and Justin talking with Torii Hunter. So cool! An awesome guy named Drew who handles sponsorships for the Angels worked with Max’s uncle Bourke to make the game happen. We heard a lot about more great people too who work hard to bring light into kids’ lives who are in challenging situations (thanks to Lindsay and Victor too). Max thought it was a great game!!


SuperMax demonstrates how the “Good Guys” overpower the bad:


By Sep 17, 2011 11:26pm

About an hour after Max awoke from his nap today we could tell he was felling much better. He’s been in great spirits all evening. Max and Mae spent the evening running about the house/yard laughing and fighting over toys. We’re relieved! Last night Justin was up with Max from 12:00-2:30am and ended up falling asleep with the little guy who woke up promptly at 6:30am. Not much sleep for either of them.

Max is now snuggling with his momma watching his current favorite movie, How To Train Your Dragon. He just told me to look at the back of his head because he can feel that it’s almost healed!

If you’re interested in Justin’s take on all of this, he just started blogging. Follow along here:http://smallccccc.blogspot.com/

In the course of writing this entry I took about an hour break to get Max into bed. He’s been very fearful of the dark. I think he’s dumping most of his unexpressed fears throughout this experience into the darkness of his room at night. Even though he has two night lights, it just seems that he understands enough of the gravity of his situation to feel the utmost fear at night, when we’re most vulnerable in some respects. Hoping to find a way to alleviate some of the fear and also empower Max to do something about it, I bought one of those cute stuffed turtle contraptions that projects stars onto the ceiling. It comes with three colors; blue, amber, and green. I described to him what each color means (amber = warmth, blue = soothing, green = healing) and Max responded that he’ll always keep it on green, because he’s healing.


By Sep 22, 2011 1:23am

Max has been in great spirits since Monday. He’s been cheerful and generally in a really good mood. He’s an interesting guy because, at his core, Max is positive, goofy, funny, fun-loving, imaginative, and creative but when he thinks too much about almost anything he becomes serious, timid, and at times fearful. When pushed, or coaxed such as in play situations, Max looses those conscious inhibitions and allows himself to be present with the moment and have loads of fun. With Sensei Wayne, the occupational therapist and karate teacher who Max is starting to spend time with each week, Max lets loose and has a blast. Max follows Sensei’s directions without the slightest hint of a whimper or whine and has so much fun with each exercise or routine. I can see that he’s not over-thinking, thus allowing himself to retain that positive energy.

Max and I had a heart-to-heart today about courage, bravery, and the sort of bad guy who causes brain tumors. Max doesn’t enjoy various aspects of his treatment (understandably), such as some things that involve the port (removal of sticky covering is the worst) or sometimes the taste of superjuice. I explained that sometimes things that are good for us hurt, such as the surgery Max had, and sometimes bad things seem to hurt less or to be more enjoyable, like junk food. We then talked about how the bad guy in the brain actually developed out of good brain cells. And yes, we drew good cells and mutated, or bad cells. Max then painted a picture of the bad cells being taken over by good ones. This exchange reminded me of the positive aspects of fear in a situation like ours. Fear is negative when it takes over your life and directs all motivations but it can also help us to be more inclined to make good decisions that have a positive outcome in relation to the problem we’re trying to solve.

Justin and I are future and goal oriented people. We often find ourselves lost in those thought experiments, struggling to stay present. Over the past two weeks we’ve been coping by normalizing everything. We see Max’s remission notice coming in, without a hitch. Meanwhile we know that one of the most life-threatening types of brain cancer comes in a large enough percentage from the resected or diminished portions of a low grade astrocytoma. Now is not the time to order a mission accomplished banner, though I clearly see it in our future. Now is the time to follow through with offers of second opinions, continued research, dietary changes, additional therapies, etc. Now is the time to be proactive, even when the insurance companies demand only reaction (another story for tomorrow).

Wishing you all good things!


By Oct 15, 2011 3:56pm

Treatment news:

Max’s counts were just high enough to start with chemo again today. After a session with Sensei Wayne where Max was noticeably less balanced than last week, he had a quick nap and then headed to the Outpatient Infusion Center. It turns out that Max is suffering from peripheral neuropathy which is caused by one of the drugs, vincristine. The neuropathy, as I understand it, is damage to the nerves in Max’s legs especially. It causes his legs to give out, pain, sensation loss, among other things. It gets worse as treatment progresses and could require us to cease using this drug, which is not desirable for the treatment protocol. Max was prescribed another drug that’s supposed to fight against the neuropathy. It may or may not work. I’m going to talk with Dr. Ruth about adding acupuncture to Max’s feet and legs and whatever else she’d recommend.Max had a great OT session on Thursday. Check him out: http://www.YouTube.com/watch?v=0sN0mA3VG_kThoughts on fighting cancer: My mom is a cancer survivor. She was telling me that the fountains of Kansas City are flowing with pink water, honoring fighters and survivors of breast cancer. When my mom was going through treatment I just couldn’t wrap my head around it. She, of course, minimized everything to ease our fears. It was caught very early and all of that but still, I was worried, almost too worried to access that fear. I needed it to be gone and, soon enough, it was. I love you mom. You made it easy for us, as moms do.It’s my job to make this easy on Max and to, at the same time, raise him as we normally would. His prognosis, even with the cancer dangerously lodged on one of the most challenging parts of the brain, is good. We have another survivor in this house. Max is asking about tumors and cancer. We talk with him about all of it. He takes the science and converts it all into the narrative that we developed with the help of the film Monsters vs Aliens. In this process I’m learning. When my mom went through it I assumed a lot. I’m used to her knowing more about most things than I do, so I just went with her reports. Now I’m responsible for my guy so I can’t put this aside.

What is cancer? It’s us, our own cells mutated and transformed and, with altered missions and reasons for being, these new cells do the only thing they know how, divide. They divide and divide, pushing garbage and toxins into our systems (waste) as they grow into masses, or tumors. The goal is not parasitic — they are of us, not another life form trying to sustain itself. Our own altered cells no longer know themselves as glial cells, build to perform a variety of support functions for the brain. They become broken, corrupted, different, “free radicals” with no job to sustain us and no self-limiting restraints. They grow out of control, and push our vitally functioning cells out of the picture. We mutate and squeeze the life out of ourselves. This is the mystery in many cancers, and most all brain cancers — why? Why the corruption and mutation of the cells and why in that location?

How do you treat something you don’t understand? We aggressively take a stab at it with methods that lack precision. We kill any cell in the body that resembles/operates like a cancer cell, hoping that the good cells regenerate in a healthy manner. We throw the baby out with the bathwater, to some degree. We’re trying food and complementary therapies, but we’re kind of in the dark, just doing whatever we can. I read recently that National Cancer Instute’s research budget is $4.8 billion and only $173 million, or three percent, is spent on pediatric cancer research. A head researcher at MD Anderson speaks to this well in this article:http://www.workingmother.com/state-cancer-research-funding-0

I was thinking of starting a non-profit to address the needs of young patients and also contribute to research and advocacy. I’m now thinking of going down the road of the social entrepreneurship model. I’m working on developing some products to sell and proceeds will fund projects. It’s simple and will start soon. Crowd funding platforms like kickstarter.com will help. Stay tuned.


By Oct 20, 2011 12:09am

ruthmax

Those who know us or who’ve followed our story know that we’re pursuing whatever complementary therapies we can for Max. We’re working on a consistent anticancer diet, as well as karate, chinese medicine, counseling, and now therapeutic riding. Complementary therapies help people fighting cancer get through the often harsh clinically successful protocols with chemo and radiation, for example, helping them suffer less side effects, etc. We have a picture posted to HTP that shows Max at chinese medicine yesterday getting acupuncture. He was so awesome! He asked “Dr.” Ruth for more needles and didn’t flinch or shed a tear when he was ‘poked’. He’s energized when he’s done. Ruth commented that he looks great and we’re convinced it has a lot to do with chinese medicine and his diet. Max actually *grew* 1/2 inch in the past two weeks!

I previously expressed my frustration with the lack of funding devoted to pediatric cancer research across the board, including in pharmaceuticals. On the other side of the spectrum, I’m thoroughly upset with “alternative” treatment resources that claim to have the only answer for cancer treatment. Of course, there’s no clinical evidence, which I suppose would be fine if you’re an adult consenting to your own treatment, but when you’re responsible for making these decisions for another human being? One website I read insisted that chemotherapy is useless, only toxic and damaging, and has never saved a life. How do you think that made me feel? This website claimed, with no citation, that any alternative therapy was 40 times more likely to be curative. We know well the damaging side effects, often years after treatment, that treatments like chemo and radiation induce, but we also know that lives are consistently saved this way. So, on the one side, we have profit over people dictating that cancer research will focus on mostly adults and that pharmaceutical research will concentrate on erectile dysfunction and, on the other, the anti-government conspiracy theorists who claim that therapies accepted my the medical community kill people and their potion/tonic answer is the only way to go, so choose. Yikes! What’s a parent to do? Well, we do our best, go with evidence, and try to empower ourselves to do more. Many of us, 80% in one study I found, find a middle path where we balance the hospitals with additional clinics and therapies. *We are* the middle ground and our strategizes and under-researched, and therefore, not well understood.

I’ve so desperately wanted someone to outline that middle ground for me. What can I do to help augment treatment. What is *known* to help? So, in my frustration, I did some research today and found some awesome complementary and alternative therapy websites for pediatric cancer that I’ll snuggle up with for the next few nights. These websites focus on complimenting cancer protocols accepted by the medical community. There’s increasingly promising research that shows the benefits on complimentary and alternative medicine along with clinically successful treatment protocols. I was excited to see Columbia University, for instance (go Lions!), investing in this research and treatment. For my sister/fellow nerds out there, feel free to follow along with me:

http://www.moffitt.org/CCJRoot/v12n3/PDF/172.pdf
http://en.wikipedia.org/wiki/Hope_%26_Heroes_Children‘s_Cancer_Fund
http://childrensnyp.org/mschony/pediatric-cancer.html
http://integrativetherapies.columbia.edu/MANUSCRIPT.html
http://www.swedishhospital.com/dotAsset/69495.pdf
http://integrativetherapies.columbia.edu/media/Media.html
http://www.hindawi.com/journals/ecam/2011/867151/
http://www.mistel-therapie.de/index.php5?page=65〈=1
http://www.ped-onc.org/treatment/cam/camsites.html
http://www.aphon.org/about/documents/CreativeArtsTherapyArticle100517.pdf
http://www.rockagainstcancer.org/addtional-resources.htm
http://www.cancer.umn.edu/cancerinfo/NCI/CDR574295.html
http://cancer.ucsd.edu/treatments/cam/therapies/Pages/mistletoe.aspx
http://www.mdanderson.org/education-and-research/resources-for-professionals/clinical-tools-and-resources/cimer/index.html
http://nccam.nih.gov/
http://www.mdanderson.org/education-and-research/resources-for-professionals/clinical-tools-and-resources/cimer/simms-mann-lecture-series.html

Someday we too will fund more research into the role of CAM and pediatric cancer treatment. Hopefully we’ll know even more about curative strategies from experience.


By Nov 4, 2011 2:08am

Max’s white blood cell counts are too low again this week. This will be the second week in a row without chemo and it’s makes everyone pretty uncomfortable. We will go in tomorrow to have a sub-cutaneous ‘catheter’ (like an IV with no needle) put in place so we can administer a drug called neupogen (http://www.chemocare.com/bio/neupogen.asp) all weekend. This drug promotes white blood cell division and therefore protects against infection. It costs $14,000 a month to take as prescribed. We have some insurance issues with the authorization but our superstar case manager worked it all out. We’ll go in for labs on Tuesday and hopefully be able to do chemo on Wednesday.

Max made some great strides in therapy this week. He can now ‘pop’ his b’s when he says ‘bye-bye’ and he was able to use his pincer grasp with his left hand today to pick up a block. That was huge for Max! He hasn’t been able to use his left hand in that manner for almost three months. He’s coming along!

At all of his therapy sessions Max’s teachers also challenge him to use his words to minimize frustration and they also set clear boundaries and expectations. We do the same at home. It may seem weird to see us being kind of strict with our child in the situation he’s in, but we’ve seen such great behavioral results. Max regressed a bit after the surgery and in the past few weeks he really works hard each day to lash out less and express himself using words more. It’s been awesome to see.

We’re still waiting on the official radiology results. I think we’ll know more early next week.

Thanks for keeping our little family close to your hearts — it means so much to have you all rooting for us!


By Nov 10, 2011 2:00am

When we talk about Max’s “counts” this is what we’re referring to —
FROM WIKIPEDIA (http://en.wikipedia.org/wiki/Absolute_neutrophil_count): Absolute neutrophil count (ANC) is a measure of the number of neutrophil granulocytes[1] (also known as polymorphonuclear cells, PMN’s, polys, granulocytes, segmented neutrophils or segs) present in the blood. Neutrophils are a type of white blood cell that fights against infection. The ANC is calculated from measurements of the total number of white blood cells (WBC), usually based on the combined percentage of mature neutrophils (sometimes called “segs,” or segmented cells) and bands, which are immature neutrophils.
A normal ANC is above 1,500 cells per microliter. An ANC less than 500 cells/µL is defined as neutropenia and significantly increases the risk of infection. Neutropenia is the condition of a low ANC, and the most common condition where an ANC would be measured is in the setting of chemotherapy for cancer.  Neutrophilia indicates an elevated count.
Max, like so many people going through this had Neutropenia (low ANC, below 550 per his doctor’s directive).  Max was at 440, and then 380 last week.  His ANC tested yesterday at labs was well over 5,000.  That’s right, 5,000.    An ANC less than 500 is considered severe neutropenia (causing a severe risk of infection) and 5,000 is normal.  The Neupogen worked in only three doses.  Here’s a good link with more info for those who are interested:
I apologize that links don’t activate automatically using this website.  Anyway, this was a good dose of great news today.  Max did really well with the “G”, so we always have a backup plan.  His red blood cells and platelets are great.  If they weren’t he’d need transfusions.
The neuropathy has gotten a bit better and is now a level “2” instead of a “6” (out of 10) or so.  The dose of vincrisitine was reduced in half anyway.
Treatment went well today and Max did very well this evening.  He awoke in pain, reminding us of how tough this is.  We had a few weeks off and kind of forgot how the two drugs, especially taken together, are very hard on the little guy. He’s a mighty boy to endure all of this and still maintain incredibly high spirits.
People are so kind to still ask how we’re doing.  We never really have a good response.  We’re ‘hanging in there’ or ‘making it’ day-by-day.  The first few days it really felt like we fell down a deep and possibly endless cavern.  Our friends and family looked down at us from the safety of the secure ground above and, from our vantage point, were likely thinking of how truly horrifying it is to fall into that space.  At the beginning of that first week we caught one of those fortuitous branches that seems to stick out when most needed, especially is kids’ movies.  That branch led us to a ledge within the cavern.  There’s still a terrifying fall to the bottom that we’ve fully surveyed and are, of course, avoiding.  With no clear path out of the cavern, we’ve become ledge-dwellers.  We set up camp, foraged and created a home out of love and twigs and random bits left by people who had been there before us.  Family, friends, colleagues all sacrifice a lot to stay present with us, sending us messages from the top and dropping MRE’s to sustain us all.  Yeah, Maesie is here too.  We all fell that first day.  The kids enjoy the new digs and the adventure every step of the way because they don’t know any better, or worse rather (they do know better than we do — their survival skills are better).  They only know the pursuits of joy and food and the warmth of love.  They get totally aggravated when their “gig is harshed” and someone or something stands in the way of these goals, but the beauty in their lives is the simplicity, learning, sense of wonderment and growth.  Justin and I have been working constantly carving stairs into the side of the cavern wall.  Some are there already, built by our healthcare system and the like, but some important steps seems to be missing.  We’re doing our best, enjoying the kids, being alive, and the MRE’s by the campfire.  Someday we’ll see you all back at the top.  That’s the best I can do to answer that very difficult question.
We still get a lot of questions about how people can support us.  The messages, texts, emails, love, prayers, support, vibes, positive thinking — all of this sustains us.  THANK YOU!  We read every comment and guestbook message, sometimes multiple times.  THANK YOU, again.  Also, we received our first check from Human Tribe Project (for Max’s savings/treatment account) and, again, THANK YOU ALL for your generous contributions.  You all are welcome to join the Tribe and invite others as well.  Everyone is welcome to join, so please send out invitations as you like. www.humantribeproject.org/tribes/team-supermax 
Love to you all.  I’m wishing our Super Max a good night’s sleep — he needs it.

By Jan 2, 2012 1:09am

We’re almost at six months.  Six months post diagnosis, post surgery, and into a new life.  We’re still continually pained to see our son changed and affected by this terrible disease.  We’re scared of the worst that could be, yet so thankful for how things have gone.   New doors have opened and life has taken on new meaning and new intensity.  We care more about things that we should, and less about things that just don’t seem to matter as much.  That clarity has been liberating, even invigorating.
We desperately want 2012 to bring us a cure.  We want the cancer free notification.  We want the PT, OT, and speech therapies to fade as school becomes the norm.  We want this all in 2012 but are very aware that 2012 may have to share with 2013, but we’ll push for whatever progress we can get.
Max is a fighter and is very aware that he plays an integral role in his own recovery.  We see him really try each day to do so many things that are tough for him.  Today he soaked up the sun, exercise, and oxygenated air at the beach.  We never use the word sick with Max mainly because he doesn’t feel sick.  If he doesn’t feel sick, then he’s not sick.  Fighting a brain tumor, to Max, is not an illness.  It’s a battle, but he’s a very strong little warrior.
Max just finished four out of six weeks of the first ‘maintenance’ chemo cycle (out of eight cycles total, with seven yet to come).  He now gets two weeks off.  We have a neuro-oncology appointment on Thursday, geneticist on Friday, one more week off of treatment (not therapy) and then we start the second six weeks.  Max did awesome this go around.  His counts were great and he was able to take all of the meds.  The next MRI is January 26th.  We are really excited about this one. We’ll keep you posted!
Happy 2012!

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