Bumps, Biopsies and Bands

[Photo description: Ollie gives a thumbs up and eats a slice of pepperoni pizza from Gabriel Pizza in the Candlelighters Ottawa suite at the Canadian Tire Centre while waiting for the Imagine Dragons concert to begin.] 

I've been debating whether or not to share this. I don't want to unnecessarily cause anyone any stress or in any way be "the boy who cried wolf". In the end I decided that (as a dear and smart friend pointed out to me yesterday), it's not my job to protect everyone and some close to us might be hurt or mad that we didn't share what's happening. I also know that we're trying to give an accurate and real picture of what life in pediatric cancer really looks like and this is so common in this world, that I must include it. 

About 2 weeks ago and two weeks after COVID invaded us, Ollie had three little bumps show up in his right armpit area. I knew this because Mario or I generally help to ensure he gets into the shower regularly and I showered him that day. It is an opportunity for us to also keep an eye on what is happening to his body and look for any strange bumps. 

[Photo description: Ollie's three current bumps/lesions around his armpit. There are lymph nodes in the armpits and originally Ollie had lymphoma in both of his that lit up in his original PET scan. The scarring around his spots are stretch marks due to thinning skin from the long term use of Dexamethasone steroids to control the inflammation in his brain after relapses and his Broviac central line that was in his chest.]

I asked Mario about it and he said they'd been there a few days. As always I was more stressed in the moment than Mario was, but he reminded me that this happens and would likely go away as usual. So I took deep breaths and tried not to worry much about this as Ollie has had rash-like lesions or bumps appear off and on since his stem cell transplant in July 2020. Usually they stay for a few days then leave as quietly as they came. Generally his transplant team has suspected it's just a bit of Graft Versus Host Disease (GVHD). The traditional school of thought is that a little GVHD is a good thing. This happens when the donor's cells (Abby's in this case) attack the recipient's healthy cells, but this also means they are attacking any leftover cancer cells in the recipient (Ollie), too. It can appear as rashes or lesions.

[Photo description: On the back of Ollie's a few weeks post transplant bald head a small red bump is circled in red. This bump disappeared within days, but was the first evidence of possible GVHD and was the first episode of our fear of relapse since transplant.]

A lesion is a slightly raised spot that can look somewhat like a rash, like acne before whitehead appears or mosquito bites. Ollie originally had three lesions before diagnosis. The bump on his neck that grew and two tiny ones on his belly that never grew. Initially doctors did not think his belly bumps were related, even though I pointed out that they appeared about the same time as the neck bump. After his biopsy and Anaplastic Large Cell Lymphoma (ALCL) ALK+ diagnosis, I reminded them of the belly bumps and requested a biopsy of those. Dermatology did it under sedation when he was having another procedure in the OR and sure enough, those were ALCL, too.

So finding rashes and legions is not abnormal for us, but I have learned better not to freak out each time it happens. So I kind of put it out of my mind and in the craziness of the past few weeks (one of Ollie' s teaching team had COVID from a family member, so his schedule was a bit less routine with him home a bit more and I am gradually returning to work and trying to wrap up a bunch of volunteer commitments) I actually forgot about it! Fast forward to this week on Tuesday evening when I was helping Ollie get ready for bed (generally Mario takes care of helping him dress as he is getting older and more comfortable with Dad). Taking off his shirt I saw that the three lesions were STILL there! 

[Photo description: A spot on Ollie's belly in the months after transplant morphed into an eczema-like spot. It cleared up with hydrocortisone and doctors suspected GVHD. It was worrisome for days as his original bump on his neck eventually was dry like eczema, too.]

Now Mario (like a regular dad) tends to brush off little stuff and tell the kids to shake it off or ignore it, so honestly he didn't think anything of the bumps. Frankly he has no idea what day it is or of the passage of time, so when I asked why he didn't flag that they were still there, he honestly didn't think it had been more than a few days. He still didn't think it was anything to be concerned about, but I reminded him that we don't have the luxury of just hoping it's nothing because of his history. I put Ollie to bed reassuring him that it likely was minor and he shouldn't worry because that was mine and dad's job to worry about him and we'd always do everything we needed to in order to keep him well.

It had been two weeks. My PTSD started to kick in, but I breathed deep and tried to analyze the situation logically as I always have to make medical decisions for him. When looking at the situation I began to add up the following:

- We'd reduced his dose of Lorlatinib from 100 mg to 75 mg 5 weeks before. The intent was to decrease side effects such as his weight gain and anxiety. He'd seemed to respond well.

- His appetite had significantly reduced and weight had gone done a bit since then, too. But lots of appetite and losing weight can also be signs of cancer.

- He had 3 persistent lesions there and two others on his back under his armpit. They did not go away with hydrocortisone like previous spots did. The original belly spots didn't respond to anything either.

- Mario had stayed in the Clubhouse with him last weekend for a sleepover on the sofa bed and commented on how incredibly sweaty he'd been both nights. This is not uncommon for Ollie, but night sweats can be a sign of cancer.

- Ollie had been more tired lately having a hard time getting up in the morning and in some days falling asleep in the car on the way home from school. Fatigue can be a symptom of cancer.

- When looking at the side effects of having COVID, every one of these symptoms could also happen in an immuno-compromised person in the months after having COVID, especially in the first month.

[Photo description: Bottles of Lorlatinib (called Lorbrena in some countries) in 25 mg and 100 mg doses are shown as well as the three 25 mg pills that he currently takes and the former 100 mg pill that he took previously.]

It was already late so I reached out to my cancer mama sisterhood for advice and understanding. When you have an incredible network of cancer mamas around the world someone is always awake and there for you. Sam in Australia (whose son Noah we joke is Ollie's ALCL diagnosis twin as they were both diagnosed in November 2019 at age 7) was up and immediately responded. We chatted online about the situation and whether I was being paranoid, how I felt and options. As always we made each other feel better about the fear and after effects that we live with daily. It is so strange and yet so beautiful when someone you have never physically met loves you enough as a fellow human being who is hurting to put aside their own worries and wades into yours, knowing full well they may be triggered by it. I cannot express enough how important it is to have people who have lived what you have on your side. I am fortunate to have so many amazing friends and family who support us and I am grateful for every one, but no one understands you and how you feel like someone who has walked miles in your shoes. I am grateful always for Sam and also to mamas Christine, Julia, Lisa and Kelly who live this daily and helped me handle the myriad of emotions over the past few days.

So now I was certain we needed to tell his team whether I was being paranoid or not. I'd rather be paranoid and wrong (please let me be wrong) than too late. And if it is COVID or an exposure to some other childhood illness, his team needed to know.

I messaged his post bone marrow transplant (BMT) clinic nurse Julie and explained the situation, including pics. I told her I knew it was not urgent, but it was important that we check this out and that I was flagging it for Dr. Abbott for her to look at during our regular checkup and blood work next Monday. Julie is amazing and called me at 7:40 am the next day, telling me she'd shared with the doctor and would let me know if any additional tests would be needed. So I went about my day, confident that his team would know what to do. Julie called me back a bit later and said Dr. Abbott was asking for a dermatology consult to look at him and they'd try to line it up for our Monday visit. 

Less than 30 minutes later I got a call from the receptionist at the Medical Day Unit (MDU) cancer clinic at CHEO saying Ollie needed to be there the next morning at 8 am. Shocked I said, "For WHAT?!". The new receptionist apologized and said it was for a dermatology consult, that they'd put an Emla (skin numbing cream) patch on and a half hour later they'd did a biopsy of his bump under local anesthetic. I thanked him and got off the phone with the overwhelming feelings of gratitude that they were acting so fast and fear for the same reason. This is not new. I felt similar in the weeks after his original biopsy as we waited for specific diagnosis and they prepped with additional scans and tests while we waited.

[Photo description: Ollie sits on a hospital gurney beside his primary oncologist Dr. Lesleigh Abbott with her arm around him in a CHEO exam room in the Medical Day Unit. Both are wearing masks and Dr. Abbott has a stethoscope hanging around her neck.]

When Ollie got home I explained that just to be on the safe side the doctor wanted to do a small skin biopsy to be sure this wasn't his cancer coming back. He asked a lot of questions about the biopsy. Would he be sedated again? Would it hurt? What if the Emla doesn't work? Are we sure they're going to do a biopsy or is it just maybe? How would they do it? Could he choose a punch biopsy vs. a scalpel/razor biopsy? Questions that no 9-year old should ever have to know to ask and just break your heart when you think about everything he's been through to even understand what he felt he needed to know this time.

[Photo description: A skin punch biopsy tool like the one used at CHEO. It has a green rubber handle and a hollow metal tip with a sharp edge.]

A skin punch biopsy is done under local anesthetic (think going to the dentist and having freezing put in for a filling) and uses a punch (at CHEO they called it a cookie cutter) to make a small whole and take the skin out as a sample (think Dr. Pimple Popper).

So I let his school team know what was happening and that he wouldn't be in the next morning and maybe not at all depending on how he felt after. I explained to Ollie in detail what they would likely do and that he was brave and strong and while the anesthetic likely would hurt a bit going in, I'd hold his hand, we'd hug Llama Llama Blue Pajamas and use our best Kids Kicking Cancer power breathing to get through it together. My ever pragmatic Ollie went to sleep with the final words, "Mom I really hope it's not cancer again, but if it is we'll just kick lymphoma's ass again! Love you!" 

As he fell asleep I lay there hugging him and crying silent tears so as not to upset him while I thought about how brave and strong he is and how unfair it is that we have to put him through more after all he's already lost. And I prayed that this is not cancer again and only minor whatever it is. I thanked my amazing God for letting him live so far and asked again that we not have to fight again, but if we must that he will win again. Then I slept poorly and got up to go to hospital. Ollie like the champ he is got up in good spirits, ready to show lymphoma who is boss. 

We talked about how things would go on the way to the hospital and then listened to his Bye Bye Lymphoma playlist the rest of the way. Neither of us ate because we were too nervous and decided we'd go to Tim Horton's for a treat and the Toys R Us for a new toy after to celebrate his bravery. He needs nothing, but I have learned that the promise of a prize after doing the hardest things is a small price to pay for his calm and courage. 

We got to CHEO MDU, and dermatology arrived promptly. We answered a few questions and then they got to work. One of the doctors knew us because she'd done a rotation as a student with Dr. Abbott when Ollie was still in treatment. She reminded us what an excellent doctor we have and I agreed telling them how amazing it was that they would come the very next day after she asked them. I have seen how she interacts with others in hospital. She always treats everyone with respect, affection and gratitude. Her superpowers seem to be empathy, and building relationships (beyond getting kids well obviously), so I am not surprised really that when she asks for help she gets it quickly. That has been our experience each and every time she asks for a consult somewhere in the hospital for us. 

They checked out his back and confirmed the smaller raised bumps all across it were dermatitis from his sweating (which we knew). They confirmed that the spots were slightly raised and could be lesions or a raised rash of some sort.  I had to flag for them that Ollie was blind because as usual that doesn't pop up prominently on his chart and I'd already put his mobility cane away so there was no obvious sign of his blindness. This is an example of why they often call sight loss a hidden disability and we continue to raise awareness, even among medical professionals. So they took extra care explaining everything to him, letting him feel the package for the punch biopsy they'd use and explaining how it works. 

[Photo description: A stock image of a local anesthetic needle being used to freeze the area for a skin biopsy (not Ollie's).]

He laid down with Llama under the opposite arm and I held his hands from the end of the bed so he could squeeze them. I'd put on his playlist for calming and distraction. The local anesthetic was painful for him, but he squeezed my hands hard (a wonder he's never broken my pinkies) and breathed deep while counting through it. Counting also helps because the brain has to focus on remembering the number sequence instead of focusing on the pain or discomfort. We learned that one during radiation as we'd count together over the speaker what was left on the timer. 

Once it was frozen, he said it felt weird, but not bad. Because he was so good they were able to take two biopsies to be sure that they had a good tissue sample. They finished with two stitches in each which he stressed a bit about as he's never been awake the few times they'd put a few stitches in him. Bandages covered them and he was all set. They told me two weeks for the results. I asked couldn't they compare it to his earlier ALCL tissue sample (is kept for 20 years for reattach and comparison) to speed up the process. Their standard answer was that it generally takes 2-3 weeks for skin test results. Julie later told me that she knew Dr. Abbott would be pushing for faster results if possible. The first time they had to send his sample to The Ottawa Hospital, so we had a diagnosis of Non Hodgkin's Lymphoma in a week, but had to wait a second week for ALCL. Given it is a very rare form of cancer with only 5 kids in all of Canada getting this each year, we get that. We remain hopeful for faster results, but that doesn't make the wait any less stressful.

[Photo description: A drawing of a skin punch biopsy being performed as well as a drawing of the layers of skin and fat that are punctured. Copyright of the Mayo Foundation for Medical Education and Research.]

I let him play hooky from school after going to Tim's and Toys R Us. He'd been through enough for one day and I needed him to be near me. His teachers said not to worry and know that they were praying for fast results and good news.

I managed to do a couple of hours of work on the laptop sitting with him while he played quietly and rested. He was tired again, but this time I knew it was emotional and mental exhaustion from the anxiety and holding it together because I felt that way, too. 

[Photo description: Ollie's two bumps stitched up after biopsy. He already has many scars from thinning skin from the long term use of Dexamethasone steroids to control the inflammation in his brain and his Broviac central line that was in his chest.]

Mario was supposed to knock off work early enough for me to take Abby to a medical appointment that afternoon, but was still online fixing a network problem when I left so Ollie watched his shows quietly. Two hours later when we got back, Mario was still online fixing it! So he promised Ollie he would take Friday off to make up for it and Ollie could stay home with him to rest and play quietly. He'd woken up really tired and kind of grumpy on Friday so this seemed best anyways and his teacher said he was already ahead in his work so not to worry. Friday morning he and I had his online session with his CHEO child psychologist. This is an appointment that Ollie makes each time at the end with Dr. Emily Johnson. He chooses if and when he thinks he'll need to see her again. Typically it's 2-4 weeks between appointments. He was angry at me for "making Dad" put the tires in the van before they could play today and taking "his time with Dad" away. As we delved into things further it became obvious that he had a lot of big feelings about the biopsy and having to wait around for us to spend time with him the day before. This is a throw back to inpatient cancer days when anytime he was sick we dropped everything to simply be with and play with him. Both for his sake because he needed the distraction and joy and for us because we feared the worst and didn't want to have any regrets. So for him when he's sick and there are procedures it's all about him again and he doesn't understand that we still have to juggle it all around our "normal" life and obligations. 

It all came out in his session that he was predictably mad and sad that he'd had to have the biopsy procedure and how none of us felt the pain that he did. He said, "I know you all feel pain in your hearts for me, but you don't feel it in your body, too!" And I cried and told him he was totally right and daddy and I wished every moment that we could take the pain instead of him and how brave he always is and how proud we are of him every single moment. And then he hugged me and said he was sorry for making my heart hurt. It was all I could do to hold him and hold my fragile heart together as I marveled at his incredible love and empathy at a time when he was the one hurting most. And as always this was my sign to keep going and to hold on to my hope. Because if he can keep going and being humane no matter what, so can I. People think I'm strong, but the strength in him is often what has propelled me forward when I am uncertain if I can. By the end of the session Ollie was feeling better and I felt like I had an emotional hangover. Dr. Emily is incredible and asked me what additional support we need and reminded me to reach out because she and the amazing psycho-social team were there for us all.

Mario is remaining stoic and says he is certain that it's not cancer. Abby is quiet about it all, but knows we're here to talk. Sometimes like daddy she expresses her fear in anger, so we've seen her temper flare a bit more easily and regularly the last few days over things she'd normally not get upset over. Ollie and I are more easily brought to tears in frustration the past few days. Time to make another appointment for family therapy.

Friday Ollie enjoyed his time with daddy while I ran errands and took Hope out to the CNIB Canine Centre in Carleton Place for a routine eye exam. Having the bit of time on my own was therapeutic and as luck would have it fellow ALCL cancer mama Lisa whose daughter Annika has been a constant inspiration to us called me from the UK to talk it all out. Annika relapsed a few months ago, but is doing well back on Lorlatinib and Lisa had some suggestions for next steps in case we need a new plan. I don't believe in coincidences, just signs and help from God, so this was another perfectly timed shot of help and faith for me.

[Photo description: The Candlelighters Childhood Cancer Support Programs sign on their suite at the Canadian Tire Centre.]

Last night we went to the Imagine Dragons Concert at the Canadian Tire Centre in the Candlelighters Ottawa suite as their guests. We ended up having the entire suite to ourselves! What a luxury! Imagine Dragons have been on Ollie's Bye Bye Lymphoma playlist since about this time two years ago when he was having brain and spine radiation.  We'd been pretty excited to go for the last weeks and tried not to let this week's events put a damper on it. 

[Photo description: Mario and Ollie stand in the Candlelighters suite with the stadium beginning to fill behind them.]

We had a very sweet member of the Canadian Tire Centre's staff taking care of us and she told us that by day she was a grade 2 teacher in Barrhaven. She obviously understood what Candlighters does and asked how we were associated, so I told her Ollie's story and she was so sweet and touched by his story and then very kind to all of us, even bringing the kids each an ice cream bar at the end of the night. 

[Photo description: Ollie is wearing his new Imagine Dragons Concert t-shirt and bathed in the red lights from the concert while dancing in the Candlelighters suite.]

We wore masks when sitting down front as it's open there and apparently there were 10,000 people there last night! Even Abby who often asks when we can stop wearing masks everywhere commented that it would be crazy not to mask there. Thankfully we didn't interact with many people on the way in or out as we arrived early and left a little early as Ollie was getting tired son we didn't stay for the very end and encore as he'd already heard all of his favourites by then anyways. 

Ollie really enjoyed it and Abby was impressed with the experience as she'd never been to a concert before.  Not that she let on to us - but she hasn't taken her new outrageously expensive concert t-shirt off since she got home and I heard her talking to her friends about how cool it was. 😎 Mario enjoyed it and I was glad to do something "normal" with the kids without the bigger risk I'd expected, but I was worried about Ollie who was flushed (it was warm in there and so was I) and pretty tired despite the nap he'd taken earlier. He did get up and dance and sing for every one of his favourite songs, so that was a good sign that it was just normal long days and emotional week fatigue. 

[Photo description: Mario, Ollie, Dawn and Abby sitting on the sofa in the Candlelighters Suite at the Imagine Dragons Concert.]

Our plan is to see his CHEO team on Monday for his regular checkup and blood work and talk about a plan just in case we need one if the news isn't what we hope (with gratitude to Lisa again for some possible next steps recommended from her own experience). And after that we'll just keep putting one foot in front of the other, living our days as we have over the past year with faith guiding us and cautious hope continually moving us forward. 

Thankfully we also have his 6 month MRI, CT, x-rays and bone density scans booked on May 11th (delayed by a month thanks to COVID) so that will give us further clarity on his stability. And I talked to the lovely scheduling person Debbie in Dr. Dollin's office last week about Ollie's surgery victrectomy and laser eye surgery on his second eye and they hope to schedule it by late May (again delayed by COVID). His pressure is holding fine, but we see evidence of his cataracts becoming more prominent as his left eye now looks more grey than blue. The show and planning must go on despite anxiety and waiting for biopsy results.

We will get through this and promise to keep you posted. In the meantime we appreciate your positivity and prayers sent our way for speedy and good news. Be well and grateful for all of the blessings that you enjoy every day. We try so hard not to take ours for granted now that we understand how fast it can all change.

Even Warriors Need Rest

Radiation is finished! Thursday was his last session and Ollie was so tired that he slept through most of it. Until the last 11 seconds that is, when the machine went down. Unfortunately it takes 7 minutes for the machine to boot back up and Ollie was stuck in the machine. The team in Radiation South was amazing. Ben and Riane went in immediately to calm Ollie and make him comfortable so he wouldn't move in order to finish the treatment without having to do the whole 10 minutes again. You see it has to be precise, so if he moved they'd need to re-scan him for 3 minutes to get a picture of his position and then calibrate the machine to do the 10 minute treatment in exactly the right places again.

Ollie was stressed and asking them to start the machine NOW. Ben was incredible, going to the back of the machine to reach Ollie's head, rubbing his head gently and talking to him about every step the machine was taking and what would come next. He also took the mask off so he'd feel more comfortable since the last bit was at the bottom of his spine and he knew Ollie was feeling caged. It was evident that Ben has a son close in age to Ollie and that he intuitively understood how scary and frustrating this would be for a 7 year old. Riane gently touched his legs while reminding him not to move. I did same on the other side. Julie was in the booth talking to Ollie over the speaker as each step was happening with the machine. 

They got the machine up, we told Ollie we'd run out and then run back in after 11 seconds and went to the booth. Naturally the machine went down again! So Ben counted down 11 seconds for Ollie on the speaker and we got him out. He did this to keep him calm and not stress him about the treatment not finishing. Ben then explained to me that at the bottom of the treatment there is about 1 cm of air/nothing and we'd be at that point anyways, so there was no effect from not finishing 11 seconds and it was not worth trying again and traumatizing Ollie further.

Then the whole team (including Danika who had not been with us that day) came in, gave Ollie a gift of Hot Wheels cars, chocolate and gummy bears and made a huge deal over how great he was at radiation, that he was all done and how much they'd miss working with him, but that they were glad he was going to get well and not need them anymore. I was teary and thanked them profusely and of course I forgot to get a picture! 

They also let him keep his radiation mask! Mario was super impressed by it. Abby was awed and a bit horrified at the idea that it held Ollie on the table so he was trapped during his treatments. He plans to mount it to the wall in his room. Every boy's dream! LOL

The last few days have been pretty relaxed. Ollie's been more tired thanks to cumulative fatigue from radiation so we've been encouraging him to rest and listen to his body. He's also had his white blood cell count, platelets and neutrophils go down significantly, although he's still slightly above neutropenic. Given this we have to take it easy and stay away from even socially distanced visits for now. Fortunately Ollie seems to get this and is not fighting us even though we know he misses seeing people. We're all pretty tired and feeling the effects of three weeks of constant worry due to daily appointments, so trying to rest.

Friday Ollie had a virtual physio appointment online. He worked really hard and showed his physio Allison how much stronger he's getting and his new Fitbit for kids (thanks Gamma and Bumpa) that counts his daily steps. 

Abby has spent a lot of time entertaining Ollie over the last few days. One day she let him do her makeup. 

He did pretty well for a blind guy and even let her do his. 

One day he may regret letting me take these pics! 

Then they put on hula dresses and leis and danced around laughing hysterically. It reminded me of when they were little and Ollie would let Abby dress him up like a princess. He was always a good sport about it and was just thrilled that she paid attention to him.

Hearing them laugh together makes me happier than I've been in 7 months. And when they act silly and laugh more, so do Mario and I. Laugher really is contagious.

They also did some TikTok videos together. 

He just wants to be wherever we all are right now. Especially near his sister. 

Abby has been having bad dreams lately and having trouble sleeping other nights. On Friday she met with the CHEO Social Worker, Sherley, who was very helpful. We also have the option of seeing the child psychologist if need be, too. Thankfully my children know that mental health is super important and there is no shame in seeing a therapist when you need to talk and work some fears out. 

Her lovely teacher also contacted her to remind her that her wellness is most important and she shouldn't put added pressure on herself nor worry about September as she is a bright girl and a strong student and will be fine even if she needs to take this time off from school work. We are so very blessed with the beautiful souls who teach our children. 

Even Ollie has realized that whenever he goes back to school his big sister will no longer go there and he was very sad about this. I told him when he starts high school Abby will be in her last year, so they'll have another year in school together again in future.

He's losing the hair that just started to grow back. A side effect of radiation...

It doesn't bother him, though as he knows it will grow back again in future.

Abby finally spent some of her birthday money on an Ikea vanity table. It arrived today and she had her first Ikea assembly experience. Real life lessons during the pandemic that will prepare her for life on her own one day. LOL

So we're playing Beyblades and Bakugan and trying to get organized after being away so much over the last 6 months. All is well in our world for now.

I'll likely write a little less over the next month unless there's real news to share. I have a few ideas for blog posts I've wanted to write but not had time to given how rapidly things have changed in our world over the last months, so I'll likely write a few of those to stay in touch. Stay tuned, enjoy the beginning of summer and I hope we'll have good news to share soon!

Nausea, fatigue and food

The last two nights weren't great. Ollie has had constant nausea and barely slept. Which means Daddy didn't two nights ago and Mommy didn't last night. So we are very tired today. More nausea all day today. The regular medicine we use during chemo that helps can't be used this time around because of the heart rate and breathing issues he was having in ICU which they don't want to recur.

We also think the formula they're giving him in his feeding tube while they have been restarting him on food after he had nothing but fluids for 12 days has been making him ill while he sleeps. So today they changed his food to something with ACTUAL food in it. 

It made me think of when Abby was a baby and the pediatrician thought I should supplement my breastfeeding with formula for the first while as she wasn't getting enough. Abby hated every one of them. Mario found a YouTube video where a dad did a taste test of baby formula. Mario thought this a great plan and set out to test each one we tried with Abby. The end result was he swore they all tasted like cardboard and she wouldn't take any, so we found other ways to increase my milk and I went on to breastfeed both kids exclusively. Maybe Ollie's body like Abby's is rejecting them knowing that's not the good stuff.

So we are focusing on eating real stuff. This has been harder today because of a loose tooth. He had two loose teeth, yet it seems he somehow lost one undetected when we were in ICU. So now he's pulled out the other one. Before doing so we checked that his platelets and Neutrophils were high enough to so that he wouldn't bleed excessively or be prone to infection. What a world we now live in that we have to check these things before wiggling out a baby tooth.

Also today his blood tests showed that his sodium was a bit low again and given they don't want him to have the same problem as in ICU they are now having to limit his fluid intake again. 

Syndrome of inappropriate antidiuretic hormone secretion (SIADH) is a condition in which the body makes too much antidiuretic hormone (ADH). This hormone helps the kidneys control the amount of water your body loses through the urine. SIADH causes the body to retain too much water. It can also cause seizures and stroke-like symptoms as we saw first hand last week in ICU. By reducing the fluid, the concentration of sodium is better in the urine because there is less urine to dilute. Today the Endocrinologist who discussed this with me asked if I worked in the medical field when she asked what I knew about it and I explained that this is what I learned from our stint in ICU. Thankfully my brain is able to retain bits of information and connect dots between related things. 

Tomorrow he'll have another lumbar puncture (LP) with inter-thecal chemo in his spine. A few more LPs and we should be done that part at least and maybe even get the miracle we are praying for to get his sight back, too.

As a side note we have met a couple of new families here and tried to help them where we could. One is a week in to their leukemia diagnosis with their 13-year old and noted one day in the kitchenette that they should bring food to the hospital because everyone they know wants to bring some, but they just don't know how to get organized. I shared our meal train web site with them so they could have their family set up a similar one for them, too. Another lovely family is from North Bay and have a baby boy (under 6 months) with leukemia and a four year old daughter. The dad has been driving back and forth 20 hours each weekend with their daughter. The mama and baby have been here continuously since December 26. She told me she's just recently come out of the shock of it all and started to talk about it. They have no family or friends here, either.  So we're sharing the plentiful and delicious food that folks have brought us with this beautiful little family because we often can't eat it all and our freezer is not big enough to hold more. So many of you are nurturing us and we know you won't mind if we share some of your love and support with them and their little M (who has already stolen our hearts). It reminds us again of how blessed we are despite everything to have all of you helping us and also made me think of my grandma who always said if you can help someone you should.