Update on Atticus

First off, isn't my husband amazing. I am so blessed to have him by my side. My kids are so blessed to have him as there dad. I am so incredibly grateful for eternal families.

After our ER trip Monday night we saw Dr. Lenarsky Wednesday at one. So here it is, yes he has drooping on the left side of his mouth and CT scan did show some swelling... Atticus' facial droop could be because of the swelling hitting a particular nerve or could be because of tumor growth. We asked if these symptoms could be because of "Post Radiation Syndrome" to which he responded, "That's pretty far out at this point. PRS usually occurs 3-6 weeks post radiation and he's now going on 8 wks post radiation." Obviously we won't know more until another MRI is done. Dr. Lenarsky doesn't think we will see much change in the MRI and said, "the MRI shows this much but the swelling could be affecting this much, a small amount that the MRI does not pick up. Or it could be that the tumor has not grown but the swelling is hitting a particular nerve the wrong way."

Can I just tell you how frustrating it is. For all of us. We never know. There are hardly any definitive answers. And not because we don't have an intelligent Oncology team, because we do, we absolutely love them and trust them, but because it's so rare and with it's darn location, research just can't be done. Only 150-200 kids per year are diagnosed with DIPG when thousands of children are diagnosed with Leukemia per year. Please don't get me wrong, any type of cancer is awful cancer, but it's really hard to see so much research being done for every type of cancer but Atticus'. The treatment plan for DIPG kids has changed very little in the last 30 years. It's no ones fault but the dang tumor location. It's just incredibly frustrating. We are constantly in the dark walking a path of unknowns with our child's life being at stake.

Shorty in to our office visit, I think my brain shut off. I couldn't mentally handle any more "options" or "possibilities." I want to scream and take a big fat Advil.

This is the conversation we had with Dr. Lenasrsky....

Dr. L: "Do you remember the terrible awful conversation we had?"

E&C: (we look at each other and think, "which one") We must have given him a blank stare

Dr. L: "The one in the beginning. On the very first day."

C: My eyes filled with tears and my heart ended up in my throat. (Unfortunately I don't think I will ever forget that terrible awful conversation) I shook my had yes, full on crying now.

Dr. L: No result or test is going to change that conversation or outcome.  (He is such a tender man and really is so delicate in the awful situation we are in and the horrific news he constantly has to tell us). "I'm going to leave the MRI up to you and will support whatever decision you make."



We want the MRI. Either it will tell us we are in the same situation we are in now, or it will tell us its started growing.

So this was the plan: try chemo that night (Wednesday May 2nd), get his MRI on Friday at 1 pm, make an appointment for Monday to go over results.  Since Atticus responds so well to Decodron (steroid), they gave him a boost of that and Zofran (for nausea) through his port in hopes to help him tolerate the chemotherapy better that night.

I left the office feeling very overwhelmed. Confused. Scared. And tired. Tired of everything. Thinking, "This is not our life. No way can this be our life." I listened to every word Dr. Lenarsky said but could not fully process any of it. The entire drive home I had to have Eric re-explain everything. So basically we are in no better or worse position than before, for now. The tumor could be growing or it could not be growing. I guess we'll now Monday. I feel pretty confident it won't show anything but also feel like whether or not it shows growth, its growing. Facial "droopiness" was one of atticus' first symptoms.

It's getting harder. Each day is getting harder. Harder to, as my husband said, "fight the fight... and win." Our reality is getting closer and it literally makes me sick to my stomach. We keep getting punched in the stomach but have to keep running. I can't think too deeply about my sweet Atticus is going through because it literally eats me up inside and I completely loose it.

I feel so selfish. I'm not the one with cancer. I'm not the one who has this huge tumor taking over my life. I'm not the one dying. But yet I'm the one complaining. I'm just so heart broken. So tired. So discouraged.

It's times like this that I have to get on my knees, say a prayer, and ask for the strength I don't have. Ask for the Lord to renew my "fight." To remind me of the special mission our son has been given. To be reminded of all the blessings and miracles we have and continue to receive. To be reminded of the many lives my 4 yr old is touching.

We "closed the kitchen" at 6pm; Temodar (chemotheraphy) as to be taken on an empty stomach, and at 7:30pm I got him is zofran ( to be taken 15-30 min prior to Chemo). Emotions were high and the water works started. Atticus DIDNOT want to take it. He immediately started crying. And not fake crying. True sincere, sad crying. He really did not want to take it. I tired to work my mommy magic but it didn't help. He was so upset. So sad. I finally convinced him to take it (it dissolves in his mouth), he gets one taste, spits it out, and cries his eye's out, "Please don't make me take it mom! Please." So that was it. We are not going to do this. We are not going to spend the precious time we have left with him forcing to take medicine. Eric and I stepped out of the room, tried to re-group and then tried to be sneaky, and crushed the Zofran in steamed milk (he loves steamers). He drank it!!!

8pm comes and its chemo time... You know how sometimes when your kids cry it annoy's you. And sometimes when they cry it breaks your heart? This was heart breaking. He gets one glimpse of the chemo and bursts in to tears, "Mom! Please. I don't want to take my apple sauce. Look at my tummy mom... there's no room for apple sauce. Please mom! Look at my eyes, they are tired eye's. I can't do it mom!" I can't even type this without crying.

Eric and I looked at each other with tears in our eyes and said, "We're done. No chemotherapy." From the very beginning we said quality not quantity. We are NOT going to spend our last moments with Atticus fighting him to take medication that isn't even guaranteed to work. No oral chemo. It's not the right fit for our Atticus. And thats that.

We wiped his tears and all snuggled in our bed and had a family snuggle. And instantly we were filled with peace. This is what we are supposed to do. Now, having said that if Temodar can be given through his port with no side effects, we may consider that, but we will not give it orally.


My friend text me later that night seeing if I could use a night out. The three of us in jams. We laughed. We cried. Ate waaaay to many Ore's and M&M's but it lifted my spirits. Yes this sucks. But we haven't been told news we haven't heard before, so buck up, put a smile on your face, go home kiss your boys and try to sleep.

So that's what I did. I got four hours of sleep, but woke up feeling like, "OK, today I'm choosing to be happy!" The boys and I made a big breakfast (steroids are picking up his appetite again) of eggs toast and sausage, played yahtzee, memory and candy land, then went to Bahama Bucks to get the worlds best icee treat!

Like Dr. Lenarsky said, nothing is going to change that first "terrible awful" conversation but we still need to try to stay happy. Atticus deserves our best. Somedays we can be our best and some days we can't. But we will always try. ALWAYS.