Well we are settled back in at the Alberta Children’s Hospital. I have lots to share, so I will break it down into two emails toady... this one has more of our personal stuff, and the other one has all the medical stuff.
We made it back here Tuesday for our appointment to sign all our consent forms... signed our little girl up for drugs that are so powerful we will not even be able to change her diapers without wearing gloves.
Common side effects (happen in 20-100% of kids) could include: loss of reflex, loss of hair, nausea, vomiting, decrease in red and white blood cells, decrease in platelets, decreased ability to fight infections, inability to have children, hearing loss, damage to kidneys, bad metallic taste- loss of appetite, mouth sores, inflammation of the throat, allergic reaction to the drugs, and did I mention vomiting. And that’s just the common ones!?! One of the nurses said that in the beginning it’s the nausea and vomiting that is one of the hardest things to cope with for a lot of patients. It sounds like losing high range hearing is quite common and for these little ones that makes learning language much harder; we were sad to hear that about half of the kids with this treatment end up with hearing aids.
Her surgery to put in her permanent line went well, a Hickman line is new for a lot of the staff here and everyone seems quite excited about it. I guess its more user friendly than the older style they used? Blood can be drawn from it with ease and all drugs can be administered through it. The doctors and nurses kept asking how “we were doing” through this surgery, we said this was nothing; she had brain surgery last week! We will have to learn how to take care of this line so that we are prepared if we get the chance to go home, or at least to our new home at the Ronald McDonald house.
At the same time as the surgery they did the lumber puncture test, this would tell us if there were any other cancers hiding in her spine. If it came back positive it would have changed our whole course of action, possibly to include radiation immediately. But our doctor expected this to be clear... AND IT WAS! No extra complications that way. That definitely swept a deep dark shadow out of the back of our minds.
She had her kidneys tested yesterday morning, a bit of radioactive dye put through her system and then a series of blood samples taken every hour to see how her kidneys were working. The lady at the imaging thought her kidneys looked “lovely.” I have not seen a whole lot of kidney scans done and cannot really comment on that, but I’m sure they are as cute as she is. In fact we are starting to have nurses just stop by because they have heard about how cute our little red head is. Please pray for protection of her kidneys during this whole treatment; I guess it is fairly common for them to dump salts and phosphates back into her system.
Her hearing was tested this morning and she showed great response to all the tests. Please pray with us that this will be the case on all her hearing tests over the next 6 months. About half of the kids that go through this treatment will need hearing aids, especially for the high range hearing that she needs while she is developing her language skills. I guess the upside of the downside is that there are some pretty cool looking hearing aids out there these days, very tiny and in any colour we want. Oh goody. But we are praying it will not come to that.
We actually started administering the chemo drugs yesterday (April 29th) she tolerated them well with no allergic reactions. We were told that we probably will not see the effects (besides vomiting) immediately, they will develop over the course of the week. We will start our second round in an hour or so, once she wakes up from her nap. We did not have a great sleep since about 6 this morning so we are letting her catch up before we get started.
She has been so good and such a little helper. The nurse keeps asking Charlotte where things like the stethoscope, blood pressure cuff, heart monitor and thermometer go (we do these vitals every 4 hours) and each time Charlotte reminds her, and points out how to do it. Our silly nurse keeps forgetting, good thing Charlottes on the ball! All the nurses and doctors are so great here; everyone has little tricks and plays cute games. Our Oncologist has a delightfully squeaky nose that Charlotte loves to press. Although we really don’t want to be here, this really is a great place for kids.