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Hunker Down

Feb 21, 2016 (Sara)

Noodles, egg, sammy, pickles, soy milk. I’m so happy to see an appetite today! Platelets were down to 9 this morning so she had platelets for breakfast. Hemoglobin is down to 7.1 so she’s gonna get some new digs flowing through her veins soon. White blood cells are bottoming out…now down to 0.5 and her ANC (absolute neutrophil count) is at 15. This means she has no ability to fight infection right now. Hopefully it will get higher soon. This number (the ANC) is what will guide our precautions. It tells us how fragile she is and when to take extreme precaution. Extreme precautions will be taken when her ANC is <500. When her ANC is 500-1000 we’ll still have to be very careful. We hope for many days >1000 and maybe she’ll even get to go to dance class. It might not be for a while but we’ll keep hoping. Till then we hunker down, eat and stoke the dragon’s fire.

Laughter Therapy.

Feb 21, 2016 (Sara)

Today was pretty stressful for me. As Scott mentioned, she didn’t really eat and even with her transfusion yesterday, her hemoglobin only bounced up to 7.7. The increase is a normal increase I was just hoping she wasn’t actually as low as she was yesterday. There was a chance that the blood draw could have been diluted a bit. Nope. SHe was very low which means she was still pretty low today. Her platelets are way down too (at 17 today). She’ll need a transfusion before her next lumbar puncture for sure but if it drops below 10, she’ll get one sooner. Her WBC are now closing in on zero. They were 0.8 this morning. I asked the doctor today if we will take her home this neutropenic (with such low WBC)…the answer is yes. Seriously freaks me out.

I spent my day tending to Maya. The majority of my time was spent with Maya and trying to either get her to eat or put a smile on her face. Maya finally perked up a bit after she scarfed her dinner. She had her wipe down bath and played with Grandma on the window sill.

Later a very nice gentleman came in to empty the trash cans. He made us all laugh more than we have laughed in long time and his humor lifted us up. Maya was playing with a pink sparkly bracelet and he said “girl girl girl…I have three grand daughters so I KNOW”. Then he went on with a story about when his daughters grew up and no longer wanted to have Friday night outings with him. Now he has grandchildren and he loves the adventures he gets with them…and he especially likes that he gets to drop em off back at home when the day is over. He said “oh yeah, I take em to the carnival. They get popcorn, pizza, candy….I send em home STICKY!” We laughed pretty hard.

Then he talked about how he gets to have all 5 of his grand kids this summer. He said “you know what Imma need…a hundred pack of hot dogs. And NyQuil…you know in case I got sumthin’ to do!” We giggled. I told him…” you might need the Costco pack”. Then he pretended to be a kid…a kid asking for more NyQuil  “mom…caaaan I…ummm…you gott sum more of that stuff?” He laughed out loud and said “They gunna go home widda HABIT!!!” I almost peed a little. It felt so good to laugh. I hope I get to see him again so I thank him for the laugh.

Moving Day.

Feb 21, 2016 (Sara)

I want to give a GIGANTIC shout out to all our friends and family who are helping us move this weekend. It was really difficult for us to accept the help for such a time consuming and challenging task but we realized that we cannot bring our child back to a place that isn’t ready for her. She will be the most fragile she has ever been, even more delicate than when she was 2 days old. We are in utter amazement at our friends and family and I truly don’t know what we would do without you. I get the chills and my eyes swell up when I think about how much we are loved. It truly is unimaginable to think, not only do I know these kind of people…but these people are my people. My family. My love. And my Life. If everyone on Earth felt this kind of Love even for a moment…we would all be at Peace. I wish we were saying “Cheers” in my new kitchen. Megs and Gen LYLASF.

Comfort Food

Feb 20, 2016 (Scott)

Saturday wasn’t bad, but it was on the grumpy side of things. Maya and I were awakened from deep sleep about 545am–records showed she hadn’t peed since just after 1am. The records were unfortunately incorrect– no biggie, these things happen. Maya wakes up about as gracefully as daddy does… the screaming eventually subsided.

Today was for resting, if there is such a thing, during the induction phase of treatment. No new drugs were introduced, and the only treatment therapy drug given was the everyday dose of decadron which is a steroid — side effects include irritability and increased appetite. Yesterday’s dose of pegasparaginase will stay in her system for weeks — side effects include irritability and decreased appetite. One would hope the two would balance out to ‘normal appetite.’ Not so. I believe I observed a double irritable three year old who was both hungry and NOT HUNGRY!

All of this is hard. We’re humbled through the good times knowing there will be darker times. We move forward knowing it’s the only way to go and having faith that we are on the right path to take us home. One of the hardest things for me is seeing my child’s appetite fade. They come into this world with the simplest needs; food, love, and security are one and the same. Eating is a clear, positive sign. Not eating is uncertain, troubling, very stressful.

Breakfast and lunch were stressful. We tried bargaining, pleading, trickery, but she just didn’t eat much. The kitchen is nice enough to make spaghetti even early in the morning, but that didn’t work either. Alec and Kerri (close friends from SF) visited in the afternoon and brought homemade pretzels– one of the few things Maya showed real interest in eating all day (thanks again, we’ll take two cases as soon as you have them ready).

Thankfully this evening I returned from visiting Lincoln to see Maya eating all sorts of stuff — hotdog, milkshake, pasta salad, bread, carrots, celery, juice… it looked like they’d ordered half the menu. There’s a distinct sense of relief when a sick child’s appetite returns… the spirit is rejuvenated, the little dragon is stoking the fire to fight another day.

Thank you for reading and commenting. We’ve realized this outlet is very cathartic for Sara and me, and your comments remind us we’re not alone. I don’t know what it would be like to do this alone, but I imagine it’d be awful.

Day 4 – Chemicals

Feb 20, 2016 (Sara)

Maya has been up and down over the last 36 hours. This morning when I arrived, she was sunggly in bed with Daddy but still sort of grumpy and VERY pale. Like alarmingly, Casper wasn’t even this white, pale. My stomach dropped knowing that yesterday’s hemoglobin was already extremely low at 7.0 and I was almost afraid to ask what it was now.

It was only 8:15 so I was patient and waited to discuss the results with a resident…I needed coffee anyways. I have no problem with asking a gazillion questions or looking over the shoulder of the clinicians when they are looking at Maya’s labs or MAR (the list of drugs/meds she’s on). I think it surprises some of the doctors and nurses but everyone is very helpful and willing to discuss anything with me. I also keep close tabs on what meds they are giving her.

She is currently on a blood pressure med (Norvasc every morning) and they just increased it today since she continues to run high. Norvasc is “long acting” but they have had to give her some fast acting BP meds a few times since she’ll shoot up to 145/90…not good. They like it closer to 117/67. They anticipate her kidneys will shrink and return to normal after chemo (a reminder our kidneys help regulate blood pressure) but since she is now on steroids, her BP will likely be high anyways. Decadron is the steroid. She will take this twice a day until March 15th (day 29). Decadron is not chemotherapy but it is used in conjunction with the chemo because it has been found to promote destruction of leukemia cells. Allupurinol three times a day is to control her uric acid. Uric acid is a by product that the leukemia cells produce when they breakdown and since her kidneys are enlarged and aren’t functioning perfectly, she needs a little help. The last thing she needs is a kidney stone. Zantac helps with a probable stomach upset from the Decadron. Maya hates this one the most (says its “spicy”) and I wish she didn’t have to take it but I don’t want her to feel bad if she doesn’t have to.

She also takes Vit D supplement and Miralax. The infusion of chemotherapy via IV (once a week for now) called vincristine, plus today’s infusion can cause constipation. No good for a kid who has no platelets and might bleed. I think the RN’s would give her the “take my meds no problem” award if they had such a thing. Every one is so impressed. I hope she continues to be okay with it but I have a feeling she’s going to start associating the meds with not feeling good soon.

After coffee and some breakfast I hunted down a nurse to find out the results of the blood work. Hemoglobin was down to 5.3 today. This was a really big drop and one that initiated the protocol for transfusion. Her platelets dropped to 25 and her WBC are now down to 1.0. The new blood definitely made her feel better and I was oh-so happy to see some color on her cheeks.

After the blood she had an hour long infusion of peg-asparaginase; this will be given to her again in the future as well. This type of chemo is produced by bacteria so it can cause allergic reactions though she showed no signs of it today. Phew. In the future, she’ll also have to be monitored closely because she’ll have built antibodies. For inquiring minds and from what I understand: asparaginase is an enzyme derived from bacteria (usually E.coli) and is used for chemotherapy to inhibit the leukemic cells from continuing to divide and grow. Asparagine is an amino acid (non-essential meaning humans make it and we do not need to eat it) and is highly involved in the metabolic control of cell function. Asparaginase promotes break down of asparagine to aspartic acid in the cancer cells so they can’t keep dividing and growing. As with most chemotherapy, peg asparaginase targets fast growing cells like cancer cells…and hair cells.

Maya tolerated the transfusion and infusion like a champ. We had a visits from a few doctors, the child life specialist, and the dietitian (wooot)! All sorts of people in and out. Scotty went to visit Lincoln and I was able to talk Maya into a scrub down with super special anti bacterial wipes. She doesn’t love the “sponge baths” but I can usually bribe her with a warm blanket.

I almost cried today when I saw her do a little dancing. She didn’t go crazy but I put some music on and we danced to five little monkeys. Then we took a bath, curled up on the window seat, colored and watched for the trains. She may not be feeling well but I know deep down, her core being is still there. Her fire is still lit. The dragon may be sleeping today but that is only because tomorrow she will wake for battle. Love is life.

She’s a dancer. .. it’s in her blood

Feb 19, 2016 (Scott)

Maya and I had a long conversation, 20 minutes straight at least, laying in bed last night. She
talked about her family, her little brother who makes her giggle, her dog who is so happy when she gets food. She told me she’ll be okay… “because I’m strong, right daddy?” She doesn’t know any other way to be, and that sustains my faith.

Maya has been sleeping pretty well but has been struggling with low energy and irritability. These are understandable with low red cell counts and a cocktail of steroids and chemo drugs. Distractions like toys, balloons, games, movies, and dance shoes have helped immensely. Yesterday Lauren, a music therapist, paid a visit.

At first it was a tough crowd, but Lauren opened with ‘Let it go’ (because she wasn’t born yesterday) and things got easier from there. The bongo player was not very good, but I tried hard and jumped at the chance for creative outlet.

Today has been up and down, but the good news is her vitals have been good and stable, and her labs are not showing anything unexpected.

Her white cell count is quickly approaching zero, which is terrifying, but it’s also part of the plan.

Maya is in the middle of a blood transfusion as I write this. The boost in hemoglobin should perk her up which will be important since a new chemo drug will follow this afternoon (pegasparaginase).

Another big thank you to the people, the communities, and the whole universe of love and support that gives us strength every moment and makes possible a place as wonderful as Oakland Children’s Hospital. Care is a passion for everyone here, from maintenance and housekeeping to nursing and oncology research – everyone is ‘all in’ for the kids and families.

We are eternally grateful.


Day 3 – A case of the wishes

Feb 19, 2016 (Sara)

Today we had a meeting with the nurse case manager. Maya was quite upset at the time of the meeting so Scott actually stayed with her while my Mom and I went to get some education for when we go home. My mind was blown. I think I had talked myself into feeling confident and prepared to hear the plan. I thought wrong. The meeting was at least 2.5 hours and when it ended I wished it hadn’t. I wish the nurse was still talking to me. I wish she could come home with us to make sure we can do this. I wish I knew I would feel confident that we can do this. I wish I heard the words “if this happens” not “when this happens”. I wish I could scoop Maya up, take her home, and have everything back to normal. I wish Maya went to ballet class tonight. I wish I didn’t see sadness on Maya’s face when she sees a video of Lincoln. I wish I wasn’t so afraid of the next year and a half. I’m very sleepy tonight. Day 4 tomorrow – yet another big day. Fingers crossed she won’t have any allergic reaction to the chemo they infuse tomorrow. Its called Peg asparaginase and apparently it commonly causes a reaction. She’ll be under close observation with everything available to treat an allergic reaction. Everything from benadryl to an epi pen. Some days I wish I could just curl up in her bed with her and sleep the day away. Her hemaglobin is down to 7 today so it was another very sleepy day. They will likely transfuse blood tomorrow sometime. Her platelets are now at 61. Her WBC dropped to 1.7…as scary as it is…it means the treatment is working. Big day tomorrow…I’m signing off. Love is life.

Good sleep and good food

Feb 18, 2016 (Scott)

Maya slept deeply last night. She woke up only to pee, and she didn’t appear to be in any discomfort. We’re careful since she seems to have a very high tolerance for pain and might be just handling it without complaining.

Maya’s fluid output, temperature, oxygen saturation, heart and respiration rates, and blood ph, are all good and stable. She is struggling with some high blood pressure and is on a daily medication to help regulate it. A lot of energy is put into protecting her kidneys. The chemo destroys leukemia (and other) cells, and they release compounds that lower blood ph and put extra strain on the kidneys. The kidneys filter out these substances to be eliminated through urine; the extra work for her kidneys is part of what raises her blood pressure (parents’ anxiety contributes too I imagine).

Maya has a good appetite, a good sense of humor, and her strong spirit hasn’t been diminished.

Whatever energy Sara and I have to help sustain Maya’s outlook is due in large part to the huge, humbling out-pouring of support and love from family, friends, and even complete strangers.

Working in education, I’m familiar with a community that cares deeply for human progress and opportunity. This past week, my eyes have been opened to a view of humanity that is beyond humbling in its power, focus, and compassion.

Thank you. For your notes, sentiments, warm wishes, support, compassion, prayers, love, and your collective human spirit. Thank you.

Day 2 – A Life So New Feb 17, 2016 11:56pm

Feb 17, 2016 11:56pm (Sara)

Today started off slightly dicey. I think “sporty” is the term fighter pilots use when a landing is rough yet successful. Today was sporty. As Scott mentioned, Maya needed some oxygen support through the night then woke with a fever. The chemotherapy she was given via IV, vincristine, is known to cause a fever but it was mentioned that the fever usually isn’t as high as 103.8. This, of course, got every one concerned so a blood sample has been incubating in the lab and we are waiting to hear back about a possible bug she could be fighting.
The fact that Maya had shallow breathing and low oxygen saturation as well as the delay in hearing from the lab hopefully means there is not fast growing bacteria in her blood. It could pop up in the next 2 days but fingers crossed it was just from coming off of the drugs from surgery yesterday. Her temperature stayed with in normal range for the rest of the day. Her blood panel this morning showed her white blood cells (WBC) down to 2.8 thousand. This is much lower than any healthy person would have. It means the chemo is working to kill off all of the rapidly producing abnormal WBC but this treatment is also killing off the rest of her WBC.
We anticipate we’ll see her blood panel show an alarming ‘zero’ for her WBC any day now. She will essentially have no immunity, her castle will fall. At least until her blood is “normalized” and the marrow can start functioning the right way again. Then her body will rebuild her supply and ultimately protect her as strong as ever.
The good news is that her electrolytes are looking good and her kidney function looks good too. If her hemoglobin (Hgb) drops much lower she will get another blood transfusion. It was at 7.6 this morning. She is holding on to her transfused platelets from two nights ago. She was up to 143 (normal is 150-450ish I think) and has been holding on to those – this morning she had 100. There are obviously many things the doctors and nurses are monitoring and they are all very good at explaining things to me when I ask. I’m sure they would be sensitive to parents if they were not wanting the details but for those of you who know me personally… I’m a giant nerd and have really appreciated the lesson in pathophysiology of leukemia. Perhaps I shall summarize it in another day’s journal entry.
Maya wasn’t too interested in playing much today. She watched Frozen and some video’s of baby Lincoln. My heart broke when she said “I just really want to see the buddy” then looked up at me and smiled. No crying. No questions. Just a statement as if she knows exactly why she can’t hang out with her brother but wanted me to know she misses him. She also saw a picture of him on the fun looking fire truck and let me know she’d like to go there. I can’t wait till she can get back on the play ground. She slept a lot today (Hgb at 7.6 = sleepy) and her new Boodah Button was a little painful. She is such a trooper and really never complains about the pain. I requested some Tylenol for her before I left tonight because she actually said “owie mommy, my boodah button”. I am so grateful for her communication ability. I think it will help me to support her through this journey.
So aside from the low hemoglobin, diminished respiratory rate, low O2 saturation, fever, pain, slight belly upset, hooked to a pole with all sorts of noodles, a nasal cannula, missing her brother…she is doing pretty well. See? Sporty. Oh wait. She also now has Roid Rage and amazing hunger. The steroids have definitely started to make their move in. I tried to tease her and said “Dada is going to drink your milk”…in hopes to encourage her to drink it first (this usually works though I will definitely think twice about this technique now). It didn’t work. Instead, the dragon spit fire at Scotty. She was so mad at him and still didn’t drink her milk. Well until later. Then she pounded 8 oz of vanilla soy milk in 30 seconds, a giant bowl of noodles and still wanted more. The RN told me that she had a kid who would wake his parents up at 3 every morning demanding a cheese burger. Bring it Dragon. I will feed you. Your castle maybe falling for now but let it fall. Let the old be forgotten and a new one built. A new castle that is stronger. Indestructible. Safe. Love is life.