Atticus Fights Leukemia

Get by with a little help from our friends

Dad — Tue, 08 Dec 2009 02:43:11 +0000

Lately we’ve all been letting everything sink in. Meg and I have been trying our best to get things back into a routine. We’re finding out just how necessary routine is for us, and just how much it helps both Atticus and Sophie feel normal again. Things are still far from normal though. We just finished up the second month of treatment, a month full with constant medication, 6mp which he fought tooth-and-nail from taking. The nightly struggle took its toll on Atticus who almost shakes with nerves when he hears anything that sounds like medication being shaken up by the fridge. It took its toll on Meg and myself too as we were at a loss most of the time with how to reason with a terrified and unreasonable 3 year old.

Really, they're interacting!

Now a new month of treatment is on us, and with good news, his ANC is still staying up (which quantifies his immune system) and he’s staying in pretty good spirits. He’s walking and occasionally running again, and his face seems to have found a comfortable balance between the swelling from the steroids and his “normal” skinny. Sophie has had her ups and downs through this all too, but she remains ever his protective and loving big sister. Both kids shared in a moment of major excitement today when I came home laden with a big wrapped box to Atticus from the people I work with. Needless to say, both these kids were excited to unwrap an incredible present and are now partying with each other each on their own Nintendo DS. Up until this point they’ve been sharing one, and the excitement with being able to play against each other is almost unbearable for these munchkins.

Thanks!

The help didn’t end there. There have been so many gestures, prayers and well-wishing for Atticus and our family we feel so overwhelmed (in the best way possible) with the love and caring of our family and friends. Today I received a card in the mail letting us know someone donated to CureSearch in Atticus’s name. So much good has been done for this tiny little boy, and much good has been done in his name. We want all those who have done anything for Atticus and our family to know that we couldn’t have made it this far without you. And Atticus says his biggest thanks to all those who are still supporting him in his battle.

Getting back to normal

Mom — Wed, 18 Nov 2009 11:04:10 +0000

Atticus has been having such a great week that I almost forget that he has leukemia. I almost forget about how much our lives have changed in just a few weeks. Our world is centered around this diagnosis now and it is starting to feel normal now. Staying in doesn’t feel so confining anymore, the meds are just part of our routine and going to the clinic once a week is a welcome break from sitting at home.

Anyhow, back to Atticus’s awesome week. The only time I can tell that he has cancer is when he walks. It’s so very shaky and stiff looking, but oh how he tries! He can climb up the ladder to Sophie’s bed again and he can do something that resembles a run. He hasn’t had to rest a lot like he was before. He is back to having no appetite, so he doesn’t look puffy and bloated. The best part… he’s smiling and laughing often and interacting with us again. I missed my baby when he was on steroids and couldn’t even turn himself over without assistance. He’s back though. I just wonder for how long before he gets sick again, before the chemo catches up with us again.

His port is misbehaving and causing all sorts of issues. The past 3 times that it has been accessed it has been difficult. It has taken multiple tries to get in properly. Not that the nurses aren’t able to properly do it though, it has nothing to do with their abilities, but rather the stupid thing is almost under his armpit and it moves around a lot. So aside from being a pain just to get into, they’ve been having trouble flushing and drawing from it. The first 2 weeks of the problematic port they couldn’t get it to flush easily, but it would draw blood easy peasy. Last week, the nurse had the opposite issue. It would flush easier than I’ve ever seen it flush, but would not draw blood. It did a bit at first when she checked to make sure she was in, but after she had taped it down and tried to draw labs it wouldn’t draw blood anymore. So she consulted with IV therapy and the stand-in Onc and we decided to give him a dose of TPA in case it was a clot blockage. So that was given and still no blood. So we went ahead and took blood for his CBC from his finger so that we could get the labs going for his lumbar puncture. She checked for a blood return once more and nothing. He goes off to his LP and everything goes really well. We come back and order him lunch and he rests for 30 minutes at an incline. She comes back in and tries for a blood return and gets… nothing! So the Onc orders more TPA and finally after another couple of hours she gets a trickle of blood through his line. It’s really barely dribbling out though, but I say that we’ll take it and lets get out of here.

By now we are the last people in the day area. I just want to go home.

The Onc said that if the port gives us a problem tomorrow that they’ll probably order a dye study to check placement and flow. That depending on what they find they may need to reposition or replace it altogether.

Crap.

So tomorrow he has a lumbar puncture with intrathecal chemo. He’s at home next week and the following week! I’m really excited that we don’t have to spend Thanksgiving in the almost home area or clinic. Funny how his treatment protocol lined up so nicely around the holiday.

New phase, consolidation

Mom — Sat, 07 Nov 2009 08:10:12 +0000

Yesterday Atticus began the next phase of treatment, consolidation. He was randomized into the standard consolidation protocol vs. the really crazy intensified consolidation, which would have given him 8 drugs during this phase instead of the 3 he will receive on the standard arm. I forgot to ask about his counts from yesterday’s labs. I was sort of distracted and flustered because his port has been giving the nurses a hard time when they try to access it. Once it is accessed, it’s difficult to flush, but easy to draw out. I have to say that I’m starting to be annoyed with the port and worried that there is something wrong with it. So yesterday it took a few tries to get it in and working properly. The nurses are all so sweet and so good at what they do. It’s the port’s fault.

There are very few things that really upset Atticus about having leukemia. I would say the biggest issue is the amount of ‘stickers’ he has to have put on during treatments. He calls band-aids, heart rate leads, the dressing that covers his port ‘stickers’. The worst sticker is the dressing that covers his accessed port. They have to make sure that it’s well secured so that it doesn’t get pulled on and therefore they use a lot of sticky stuff to keep it on. Getting everything off when it’s time to leave has been the hardest part for him. He has sensitive skin and the stickers are meant to be really sticky and are still very sticky when the nurses and I pull them off. Today Caitie (hi if you’ve found his CB page ) took an extra bit of time and care to take off his stickers with detachol. I never knew that it was an option. No one had ever offered to use it on him even though I’ve told them that the stickers are the worst part for him. So another part of the painful, crappy process was made better.

He started taking 6mp last night. It’s a big dose, 10ml or 2 teaspoons. The pharmacy said they don’t flavor 6mp, so I wonder what it tastes like. He didn’t fight it as bad as I thought he would. Took every bit without spitting any out. It has to be taken on an empty stomach and not with the zantac he also gets at night as that can affect absorption of the 6mp. So hopefully some sort of schedule or pattern will emerge and we can figure this out without having to wait up for his tummy to empty.

The steroids and effects of vincristine are finally wearing off. He’s so happy and cheerful again. I love hearing him giggle and seeing him smile. During induction, while on steroids, he would only smile when on versed during lumbar punctures and bone marrow aspirates. He also stopped walking and playing completely during induction. He has started walking again. This week he went from taking a step between the couch and coffee table to cruising the furniture to walking along the wall and now he can walk in open areas, but he’s still very shaky. He is happy to play again, especially with Sophie. He’s playing with his Thomas trains on the awesome train table and Eric’s playmobil toys that were his as a child.

More later. He needs me for a bit.

::Time to Catch Up::

Mom — Thu, 22 Oct 2009 21:10:25 +0000

Monday 10.19:
Atticus turned 3! He was really tired and grumpy all day long. Sometime mid morning I noticed that there was a sprinkling of small bruises across his tummy and he felt warm to me, so I took his temp. It was 99.8. We cuddled for awhile and watched tv. I took his temp again 2 hours later and it was 100.2, so I called the Onc clinic. They had me take him to get labs drawn. His numbers came back okay so we sat around and had the crappiest birthday ever. Oh and no phone call with his bone marrow results either.

Tuesday 10.20:
My birthday began with a phone call. It was the awesome nurse calling with his results. He is lymphoblast free! I was so happy to start the day with such great news and to not have to wait around for the phone to ring. The day was so beautiful thanks to a warm front that was passing through. We decided to go to the arboretum for a picnic lunch. We had rosemary foccacia, honey crisp apples and mint water. It was so yummy and we were all happy and cheerful on our brightly colored picnic blanket enjoying each other’s company. Atticus fell asleep on the blanket and Eric, Sophie and I took turns reading aloud from A Family of Poems by Caroline Kennedy. We went home and just hung out for the rest of the day.

Wednesd

ay 10.21:
Went to the park with friends. Sophie and her best friend finally saw each other after a very long time apart. It was a beautiful day! So gorgeous and sunny. Just a normal day.

Thursday 10.22:
Atticus woke me up at 6:47am because he wants food. So from 7-9am he ate 2 soft pretzels, 2 pieces of zucchini bread with butter, whole wheat toast with butter, and strawberries & cream oatmeal. I was feeling super exhausted because Sophie and I had a slumber party the night before and stayed up until midnight.
We did our morning stuff because he didn’t have to have a bone marrow aspirate or lumbar puncture. It was just a regular onc clinic day with vincristine. I made the tastiest lunch ever… brown sugar bacon and avocado BLT. It was just so good. I haven’t cooked much at all lately. I’m just too tired to care and after playing short order cook all day, I’m not into making a real meal. Sad but true.
We leave a bit earlier than we need to because his appt is at 1:15, but we need to arrive ½ hour earlier if he needs labs drawn, which he did. We dropped Sophie at Grandma’s house and continued on. We check in and wait in the room to be called back. He was really grumpy and not wanting us to look at him or talk to him. This has to be really hard for him to wrap his mind around. That and the steroids cause some anger to come out. We’re called back and his temp and blood pressure are taken. His height and weight are checked. He’s up to 31lbs3oz. Up a full pound from last week! Up 4½ pounds from diagnosis 3 weeks ago. Goodness! No wonder his cheeks are absolutely huge. I wish they were big and chunky due to a healthy appetite in a healthy boy. He looks so very different and acts so very different now.
Dr. F’s nurse comes in and talks to us, N the clinical trial nurse comes in and talks to us and finally his nutritionist comes in and talks to us. His port is accessed and labs are drawn. We hang out and order food for him. He adds more beads to his beads of courage necklace. It’s quite full and he’ll probably need a new necklace after next visit. The nurse brings in a toy box, which is full of brand new still in the package toys for the kids to keep. He doesn’t even want to look at it.
We get his lab #s back and his platelets were good at 103k and hemoglobin of 8.2. As she’s giving him the vincristine, the nurse says that he’s sort of at the point when the will transfuse. So she goes off to talk to Dr. F about getting Atticus some blood. The tv in his room is broken and now he’s crying because he wants to play Lego: Indiana Jones on the PS2, but can’t. Nurse says she’ll see if she can move us. Comes back and says they’ll give him a transfusion and moves us to an infusion suite, which is twice as big and nice as the treatment room we were in. He plays for awhile and starts fussing. So I have Eric hand him to me and he falls asleep.
The lab is done typing his blood and the nurses come in and start his blood transfusion. He stays asleep through it all. I really love his port. Once it’s accessed the rest of the day is great and painless for Atticus. I was really freaked out that he would have this thing inside of him for a few years, but now I understand why and I love it.
Two hours later and we run out of there. I think we were the last people in the clinic. We run and get our Sophie girl and sit and visit while she eats dinner. We then go out and have dinner for us, which btw Sophie ate another entire dinner.

Best news of the day:: his ANC is 1,170! Up from like 10. I’m just regular paranoid about him catching something now instead of super crazy paranoid.

Next week:: bone marrow aspiration and lumbar puncture. Next Wednesday is the last day of steroids!! I hate steroids. I hate them so very much. The 28th is also the last day of induction. We’re making progress.

Hungry and mean from steroids

Mom — Thu, 15 Oct 2009 17:34:50 +0000

Atticus woke up this morning hungry and grumpy, but couldn’t eat before his bone marrow aspiration (bma). He was grumpy and generally mean all morning long. We got to the hospital a few minutes early and signed in for the day. We were told our room # and went to get settled in for the day.

Today he had a BMA because his lymphoblasts last week were still at 27%. They have to redo it this week to see if they are done around 5%, which is the number his doctor is looking for. His doctor did pop into his room and said his preliminary look at the slides showed some good things. So I can’t wait to hear the official numbers. Hopefully we will hear something tomorrow because waiting until Monday would be nerve wracking.

Speaking on Monday, sweetums will be 3 years old. I can’t believe my sweet baby will be a big 3 year old boy. I’m so glad he still likes to snuggle and cuddle. A group of friends went in together to get him a train table. He’s going to be so super dee duper excited.

He hasn’t had any blood or platelets since last Wednesday! Yesterday we had labs drawn and his platelet count was 30k, 30k is their borderline number for needing a platelet transfusion. They weren’t going to give him any, but I asked if they would because the weekend is coming and his birthday is on Monday. If his platelets get really low he shows signs outwardly such as lethargy, bruising, paleness and aches. So I didn’t want to him to feel like crud on his birthday. They accessed his port and drew new labs and his platelets went from 30k yesterday to 50k today! So they cancelled the order of platelets and he didn’t need any blood or platelets today. He’s finally making his own blood again. His WBC(white blood cell) count is low, but otherwise he’s doing well.

They gave him vincristine aka his chemo. After he had his chemo and woke up all the way he ate a personal sized DiGiorno pizza, gold fish crackers and grapes. I hate the crappy food they have available at the hospital. I really want to feed him well again, but he became addicted to pizza and chicken nuggets so it’s been very hard. Making stuff from scratch is exhausting when he eats every 30 minutes. Half the time he doesn’t even eat all of his food before asking for something else or screaming that he hates it. Two more weeks of steroids and the pigging out so I’m really going to try to turn things around while he’s hungry and willing to eat.

Numbers

Mom — Fri, 09 Oct 2009 14:42:55 +0000

So, today we had his results in around noon. I was happy to not have to wait the entire weekend to know the results. He is currently at 27% lymphoblasts. I was told not to worry, which I won’t because little guy started at 97% lymphoblasts and I think that’s amazing for one week to be rid of 70%. So I’ll take it for what it is and look ahead to next week.

Next week he will have a repeat of yesterday, which means another bone marrow aspiration, IV chemo and possibly a lumbar puncture with intrathecal (in the spinal fluid) chemo. He will do all of this again on the 28th as scheduled. 3 consecutive weeks of this protocol sucks so much. It’s hard for me to handle, though he seems to do much better at the emotional and physical parts of this than I ever thought a child could.

His appetite is very hardy right now thanks to the steroids. He still hates to take his medicine. His legs hurt from the vincristine (IV chemo given yesterday), so I added tylenol to the line up.

His birthday is in 10 days! I’d better get something together for him.

Ways cancer has changed my son

Mom — Thu, 08 Oct 2009 16:16:23 +0000

Just wanted to tell everyone that Atticus is doing well. We’re home and snuggly. He’s watching Doctor Who with daddy while I do some bill paying.

Everything went well today. Eric and I stayed in during his lumbar puncture and bone marrow aspiration. I held Atti’s hand and talked to him while the doctor worked. He is really brave and handles everything so much better than I ever could. His hemoglobin is the highest it has been since this all started and soon enough he’ll be making all of his own blood again and won’t need transfusions nearly as often. His ANC is 10, so we’re to isolate him from crowded places and use a mask if we do go out. We’ve been hanging out at home, so that’s pretty much what we have been doing already.

We’ll find out if he is in remission either tomorrow or Monday! 5% lymphoblasts is the magic number. If he is at 5% he’ll go to the regular oncology clinic next week for chemo, if it’s >5%, he’ll repeat today again next week at the almost home area. So everyone cross everything, chant, pray, meditate, picture 5%! He’ll repeat today’s protocol on the 28th either way to see how he’s progressing and from there they will give us instructions for next month.

He’s feeling okay when his blood numbers are up. Tuesday and most of yesterday he felt pretty bad because his platelets were so low, but he had more yesterday and that really perks him up.

Ways cancer has changed my son:: he was listing off exactly what he was going to eat for lunch during his spinal tap this morning. If you don’t really know yet, Atticus eats enough to live, but has never been a fan of food or eating.