Counts came in well this morning. We are still in the incubation period though for Holling to show symptoms of Playroom 3B licking and Norovirus so…..we go tomorrow. Gives us a chance to observe if her bp improves without the antibiotics and antifungals. Also if anyone starts hurling at the house in Richmond then we can divert to another location for a few days.
Now the pack up, the haul and then the pickup in the morning for maybe even a quick lunch at Ricki’s for Ruby’s hashbrown and sausage hankering. Dad’s pancakes were spot on this morning. She was super impressed. The chicken sandwich was also a winner. Good on ya Brian, can we open a resto in the Junction now?
Well I suppose now we get to experience lockdown in the hospital. No access to kitchen or other wards, no one come in…..I can go out but carefully. No visitors. So food is a challenge. Will have to do takeaways and Brian will have to do drops from the air haha.
Ruby’s counts are the same as yesterday but her hemoglobin is crashing as is her platelets. Up for more transfusions tomorrow.
Counts up a point – we are hoping she rockets up before the ceiling caves in. For the first time in a month (ya we’ve been in this little room almost a month) there’s the sound of running water above the beds. I remember all the old apartments that I’ve lived in with hot water heating. It’s that sound, above us. That familiar rush of water and then that tick tick tick of the heating pipes. It’s nice…as long as it’s not leaking into the ceiling. I say that not as a paranoid basedonnothingbutfinehonedmamapanic but as a veteran mom of a chemo patient in this ward. Three times since being here there’s been water leaks in various rooms. Into the walls, coming out of the ceiling etc. We’ve been lucky and hopefully this is just a little warm reminder of well loved apartments in my past.
Righteo, no blood products required today. Meeting with docs to inform of our next break at 12:30, Ingrid, one of Holling’s favorite ladies is here from the Great White North and it’s Alison’s Birthday today! Everyone wish her a continuation of her timeless beauty and ageless wisdom. We wish you all the best jokes and endless warm fuzzy love.
I truly do. I enjoy being wrong. I might question, I might get passionately involved in the discussion but if there is information I don’t have and I can benefit from it, I’m in. All in.
righteo so here we go again although this time with more information.
Turns out that the stickers for CMV tested blood are quite irrelevant as they are no longer going to test blood for CMV. This I suppose is a good thing and a bad thing while Blood Services relies on their filtration to almost remove it from the blood supply. Ya. Thank god for technology. So here we are waiting for platelets. You know again I have to say that if parents were given information about the drugs and the risks and the reasons behind decisions made then we wouldn’t feel so in the dark. It’s a huge responsibility to place on people who don’t have the adequate resources or time to make them.
Ruby’s counts appear to be coming up thankfully negating the need for an early stem cell infusion. We will be taking a break once we are out of here to recoup her health. Not sure what the next step is or what the next step should be. All I know is that after speaking to the oncologist I feel reassured that we all share the same questions, the same “unknowns” and at least he’s got some connections to other professionals out east and in Germany who he can reach out to for more info. I think making it clear that while we treat this type of cancer like other ones, it’s understood across the board that there is very little research done on pineos so therefore there is no real standard of care plan that fits and works for this particular cancer. There’s what they can do and …well…I suppose that’s what they can do.
We wait. And wait. And make short term plans.
By the way, the nail salon is open and if you want some nail painting done, Ruby’s doing nails for free and throwing in the odd finger for special customers.
Righteo so now sitting at .2 though we need a platelet transfusion today.
Spirits are good, nose is runny (could be chemo, could be something else). I found it interesting how the doc said to me “Well, how would THAT happen? There’s no way she caught that in here.” And I almost laughed out loud. Until I realized that she was completely serious.
With the number of warning signs on doors in an unfiltered unhermetically sealed unit that indicate contagious colds/flu/pneumonia etc…with nurses coming and going and explaining to me while they only use the microsan between patients that the only way to truly clean your hands is with soap and water (Cdif and the respiratory ones need soap and water)…..yaaaaa…with volunteers coming and going and air that flows between rooms…ya. I have NO idea how she could possibly get sick.
Well, still sitting here, trying to keep Ruby healthy. She had an MRI this afternoon. All clear so far. 🙂 That’s fantastic news considering we were told that this recurs at a very high rate in short order after surgery.
That’s the big update of the day. Good news. Need those counts to get up there so we can get her out of the hospital to recover her health from treatment.
Rainy day playing havoc with my sinuses.
Her heart rate is still playing silly buggers as is her blood pressure. Sometimes I sit here for hours just listening to music or mediation stuff or random things online and every 5 seconds I make sure she is still breathing. This is one of those days.
Well here we are at Day 22 with a child who is still not producing wbc or red blood cells or anything really. Apparently there was a family before us who brought up the CMV connection to blastoma type cancer tumors becoming resistant to treatment (by a whopping 75% increase in resistance to treatment)…and CMV positive blood products given to a CMV negative patient…with a blastoma type tumor cell. Ya. So I insisted on tests and fortunately this is going to happen. I appreciate being heard. The next thing to happen is a discussion – I requested a conversation about an early stem cell transplant. As in the next couple of days. So the good thing is Naomi is on it. She’s our superstar negotiator nurse. She makes it happen. She’s going to coordinate a meeting to discuss this as a potential treatment. The thing is the conversation has to happen very soon as it takes time to prep and to make sure she doesn’t get sick. So now…being in pre transplant mind…we will again need to isolate up. Which isn’t much different but might mean I won’t get to hug my little bug for a while. Poor Holling, it’s a good thing Brian and Holling have each other during this.
It’s tough on the little dude too. He had his 4th birthday with some “safe” (not sick) friends of ours and after he said to his dad “Daddy, I had a good time on my birthday but next time can we invite some kids to my party?”
So now I have been told that despite her CMV negative on admission status, she’s been given CMV untested products 4 times. Then I was told that the Dr. yesterday was wrong and it’s not an antibody transfer risk, it’s an actual viral infection risk. Which in Ruby’s case would be life threatening right now.
Then I was told the policy is across Canada that neutropenic patients (those who are immune compromised to the n’th degree) don’t receive CMV negative products unless they are awaiting a transplant from another person. Then I read three province policies from 2014 that are actually completely in opposition to this “new” policy here in BC. Which negates the Canada wide theory, also it questions the validity of that decision. Then I read a bunch of articles on how CMV is a really big mortality risk in patients such as Ruby and also for patients receiving their own stem cells. Then I was told that CMV negative products are held for transplant patients only (greater good evaluation) which I think is great and then I was told she was given CMV negative just because her’s need to be washed and with the luck of the draw they gave her older platelets that just happened to be CMV negative because no one has been needing the CMV negative platelets. (Greater good not required as often as thought?).
I requested a retest of Ruby as of now to gain her current CMV status.
Then I respectfully requested CMV negative products until that is established.
I had to correct the delivery of the information this morning to a more respectful tone towards me. And then I was asked why Ruby was receiving a certain volume of fluids in her line. Which I replied to in a very respectful way. I am not the one who sets the volume of fluids nor am I the one with the ability to assess the volume requirement. That would be a decision made by the doctor, therefore, if you feel she does not require that amount of fluid, perhaps you should reduce that? Yes. Don’t question, don’t ask, don’t educate yourself but you as a parent are 100% responsible for accepting and signing off on any drugs/treatments/blood products given…..without education on risks or current policies, without information and without questioning. What a fantastic situation.
Please forgive my current disillusionment. Please forgive my current disbelief. I just think that blind acceptance is not applicable nor is it proving to be safe.
Sometimes you get the right nurse at the right time. The one who holds you while you sob, the one who makes you look in her eyes while she tells you to never say you are sorry for advocating for your child and the one who says how proud she is of us for being strong enough to say no.
Another thing to learn about blood transfusion. There is a virus in blood products that everything gets tested for. If you read this small article you see that cmv positive products should not be given to a. people with cmv negative status, c. with no functional immune system, or c. facing any sort of transfusion of stem cells – especially if harvested in an cmv negative state.
So today they came to me with a bag of washed platelets that did not have a CMV negative sticker on them. I said, well, why would you bother giving her CMV negative blood but not be concerned with the status of the platelets and no one could answer me. They got the hemotologist on call in here (you have a 10 minute window in which to deliver these products to the patient’s blood) who then could not explain why suddenly this sticker was no longer important and why you would give a neutropenic child this product with this risk of antibody contagion. He said it was because she was not up for an organ transplant or a stem cell transplant from someone else. I reminded him that she is third round chemo, post stem cell harvest and her stem cells were upstairs in a vault on the 3rd floor in a CMV negative state awaiting re-infusion in less than a month. I asked him how it made sense to give her CMV positive antibodies (by exposing her to cmv positive platelets) when her previously harvested stem cells are negative. How is this any different from any other transplant situation? The cmv status must match or the transplant can not occur. This would mean that all the freakin stem cells we harvested in January would not be able to be transplanted back into Ruby come the appropriate time. (Which by the way, if her bone marrow doesn’t start making white and red blood cells soon, we might need those sooner than later). He stopped and said “good point”. So I said, take the bag down, you are not giving Ruby those platelets. Which is hard. Because I’m a bloody musician. And sometimes I paint bad pictures. I’m not a doctor, nurse, blood specialist or otherwise and I feel so insanely outraged that I of all people had to come up with this logic. That I had to diagnose the potentially devastating effects of a choice made out of convenience, regardless of safety and my estimation of the Blood Services folks drops even further. Further than it was before when we fought for 2 months to have washed platelets in the first place, where they don’t accept Ruby’s “type” of escalating allergic reaction as a reaction until it became extremely concerning that the next reaction would mean the ICU. It’s astounding. What is equally astounding to me is trying to find a place inside me that can trust the people who study this for their professions. Oh ya, this too: http://www.cmm.ki.se/en/Research/Cardiovascular-and-Metabolic-Diseases/Cell-and-Molecular-Immunology/Cia/Our-research/CMV-infection-in-cancer/
And you wonder why I question modern medicine. It’s as if we teach these concepts and treatments separate from each other, how the interaction between nutrition, blood, chemo, cancer, mindbodyandsoul are disregarded.
I had to take a very fast angry walk down the hall after this. I just left poor Brian in the room, no clue if he was as mad as me, (to be honest, he has a better handle on “letting things go” than I do) I just needed to make sure that I didn’t strike anyone with my lightening. I kept thinking green green green heart chakra, come on, green green green….love, compassion, acceptance, love love love. But I’m still a little mad. Well…thunderstorm girl here will get over it. I get rather redly mad for a short time and then I can breathe again. This time however, I’m very very tired. Tired of having to go and educate myself in 5 minutes about blood, another infection risk, transfusions, and risks and then speak to it in a logical, clear manner.
I’ve held it together pretty well but today took the cake. Took the cake took the icing, took the filling..just took it all.
Damn that nice nurse. She made me cry and taught me something. Don’t say you’re sorry when you are keeping your child alive. Don’t. It’s not needed.
I hadn’t actually gone to bed yet. I was trying to push a bit more food into her to try and get us past the 650 calories a day mark that we’d been able to achieve. Actually, this is an arbitrary assignment of calories. When Brian can drink what we make Ruby and not eat until dinner with little weight loss (sorry Brian :)) and LOTS of energy, I’m thinking simple calorie calculations aren’t what they are cracked up to be. They don’t take into consideration the actual energy that food gives us. Our comprehension of how the body works seems more and more limited the more I research what we DO know.
Anyhoo, Ruby is sleeping now, very pale. I’m back down to pushing 25 mls per hour. We had her up to 40 but well, time to back off I suppose. Her counts are still at zero, things are still tricky. She’s on a bunch of meds now, the antinausea meds (as well as ginger in every feed), the anti-fungal meds, the antibiotics, the anti dehydrator, get the pattern?
So if you have any spare goojoo’s to send, please send them to the ether to channel to this little tiny girl who is sitting at 19.4 kgs, is almost 8 yrs old and is very very pale. I’m trying not to worry. The wolf still guards the door. Thanks to the very vocal Italian family in the next room (which btw is chockers full of love and good energy), the cleaners have changed their approach to our two rooms. It’s the cleanest it’s ever been. It’s amazing to me that cleanliness is the first step to health and eliminating the spread of disease but our hospitals are shamefully filthy.