It's all in your head...

We've had a rough day. It started out with throwing up. Never a good way to start your day. Mario had taken the day to help and arrived shortly AV (after vomiting). 

All morning Ollie was restless and unhappy. Partly because he didn't get to go home again today and partly just because he felt rotten and is tired of feeling that way. He has been having intense pain in his head and that worried us and the doctors. We've been doing a lot of head rubbing and for massaging to try to help him.

Ollie endured a neurological test this morning (protesting loudly that it was stupid and these weren't even real medical tests!). Everything apparently seemed okay.

I met with Social Work this morning for my own peace of mind and later we all met with a psychology resident to talk about Ollie's anxiety. He has always been a sensitive and sometimes anxious kid, but lately it's really tough and understandably so. The really good and surprising news is that we are apparently killing this parent coaching/managing anxiety thing despite often feeling we aren't. The psychologist told us every strategy we are already using to calm him (gentle touch, one voice, white noise, telling him how powerful his brain and positive thinking are, etc.) are things they have to teach most parents to do when they start working with psychology. 

So I guess we are ahead of the game. I just wish it was a game we knew all of the rules to. Most of it is stuff that worked when they were babies and we didn't know what else to do. They are going to help us to teach Ollie to show us when he is feeling anxious before it escalates and help us to apply strategies to avoid the escalation versus the ones we are currently using simply to help him recover after he has already escalated. I did feel good after meeting with our mental health team. It can be scary to put everything out there about your parenting and have it judged.

At one point this afternoon the doctors told us they wanted a CT of his head to rule out a blood clot that can sometimes occur in chemotherapy patients. Ollie started getting worked up about this as it required another IV insertion (third this week) so that they could inject contrast into him. In order to calm him we had to give him Atavan (a sedative) and rock him while rubbing his head.

At this point he started mumbling his words like he couldn't form them and then couldn't suck water into a straw. We were very stressed. At this point the doctors wanted an immediate CT.

We got him calmed and onto a gurney where he promptly threw up all over himself. Changed him, bedding and gurney and we were on our way. Ladies in CT were incredible (as always) despite being short-staffed (Mario and I helped to move him from gurney to backboard). Then we lead aproned up and stayed with him.

A bit later after we were back in his room and settled, the doc confirmed that CT was clear, but said if fever is not gone tomorrow they'll call in infectious diseases to be sure they didn't miss anything. Worst case scenario Thursday he'll go for anorher lumbar puncture to rule out meningitis, but we hope he won't need it.

Tonight after much drama they managed to get a stool sample and will test that, too, so I am hopeful we'll finally get to the bottom of this. We hope to be home for at least a few days before starting round 3 of chemo next Tuesday.

The day wasn't all bad...we did get some news on last week's scans to check on the progress for his lymphoma, but I'll write that shortly in a separate post.

So I am just rubbing his head and trying to get him through this however we can for now.

Please keep praying that this illness passes for him quickly so he can stop being in pain and we can get home. 

Darkness, Anxiety and Morphine

This is Ollie lying in a dark room after begging us to take his nausea and headache away.

I am not trying to take horrible photos of my son's suffering, but in the interest of raising awareness of lymphoma and childhood cancer and their affects, I need to be truthful about what it's like for him and for us going through this. 

This is day 5 of fever, nausea, headache and diarrhea. Many of you are probably battling same at your house with your kid or another loved one. It always feels rotten to watch someone you love be ill. It's worse still when you don't know how strong they really are because they've been undergoing chemo for months. 

We are fortunate in that Ollie's red and white blood cell counts, neutrophils and platelets are looking good. We just don't know when the fever will finally break and allow us to see the proverbial light at the end of the tunnel. Plus our tunnel leads home for a few days and then brings us back here again next Tuesday to start our deferred round 3 of chemo. 

Thankfully Dr. Abbott (the head of Oncology/Hematology whom we hadn't seen since the day we were diagnosed) was on rotation this weekend and gave Ollie the choice to stay after his fever broke and start chemo as soon after as possible, or go home for a few days to rest and prepare mentally to tackle round 3. Ollie chose home and is anxious to get there. That can't happen into he has been fever free for at least 24 hours.

The occasional vomiting, diarrhea, and even nausea aren't so bad. It's the headaches that are brutal. I've always gotten terrible headaches and had migraines since I was 10. It seems my little warrior unfortunately takes after me in this way. He has begged for medication to get rid of his excruciating headaches and since chemo patients can only have Acetaminophen (Tylenol), but never Ibuprofen (Advil), pain relief options are limited. So we've had to resort to morphine a couple of times. Morphine always seems like some end of life palliative drug that is given, not something to ease a headache. 

Add to this the anxiety that Mario and I have...what if it's really lymphoma in there causing this? We know logically that his first scans and lumbar puncture showed that he did not have lymphoma cells in his blood or his cerebral spinal fluid (meaning not in his spine or his brain) and that his very first day of chemo treatment on November 28 (all lymphoma dates are now burned into my brain) they injected the chemo drugs into his spine as an insurance policy so it never gets in there or to his brain. We know these truths, but when you have too much time to think as I do watching him in hospital and Mario does when Abby goes to bed and the house is quiet, your brain struggles to accept the logic, always finding the fear easier to believe. Ollie had updated CT and PET scans last week, but we're still waiting on results to ease our minds.

So we wait and try to be patient, making him as comfortable as we can, trying to keep him from getting angry about being here so he doesn't waste what little energy he has fighting. Today he told me it was all my fault as I lay beside him, running his back and head trying to get him through a tough afternoon. Reluctantly as he felt calmer from my touch and patience he admitted it wasn't ALL my fault. LOL People say motherhood can be a thankless job and in this moment I was feeling it. A dear friend today told me he'll appreciate that we did everything to save his life...when he's 25. So there's that the look forward to! 😜

You also start becoming a hypochondriac yourself, washing hands constantly, hugging but not kissing him, no sharing of food and not breathing on him. Mario and I have worn masks here constantly so as not to expose him to anything else and not to get this virus ourselves and take it home. My stomach feels off today and my first thought was I caught it, but I feel fine otherwise, so am thinking it's likely just my anxiety around all of this. 

Don't get me wrong, we've got this, but it is tiring and we want this battle to be over so we can ready for the real one next week. 

I also miss Abby desperately and she is sad that we're not all home together. We video chat, but it's not the same as snuggling at home. 

Despite all of this, we are okay. Perspective is everything. I have been chatting online with Kelly, mom to #StartwithHillary (startwithhillary.ca) @StartwithHills who is a champion for stem cell donation and getting swabbed because her daughter has Aplastic Anemia and will likely need a stem cell transplant in the future. They have to worry daily about whether or not their daughter will have enough blood to live or need a life saving transfusion. They were exactly where we are now for 27 days when they first diagnosed her, so if she can do 27, we can do however many we have to to kick this bug and be ready to battle lymphoma next week. 

I promised her mama I'd tell dozens more people about Hillary to get more folks out to get swabbed. If you're between 17 and 35, please consider getting swabbed. It takes moments and you could save a life. It could be Hillary's or my son's if he needs a stem cell transplant later on if chemo doesn't cure him. It also becomes part of an international registry so you could save anyone really! Learn more at: https://www.blood.ca/en/stem-cells

Until the fever passes, we're here and making the best of it. Hope you are home with loved ones and virus free!