Part three, continuation from a month ago would be this: Andrea didn't call, but then I called her just before 4pm. I am trying to remember what was said, but I can't remember exactly. More or less, she told me that the requisitions were never sent and we'll have to wait again. She will definitely make sure that this time the requisition will be sent. I told her how very disappointed I am, how much I lost all my trust, not because the requisitions have not been sent, but because of the lying. I asked her what is the sense of all this lying, when finding the truth was as easy as a phone call. She told me time and time again that she has never lied to us and I actually tend to believe her. I really like Andrea, I always felt like she was on our side, so I will choose to believe her.
The following Thursday, April 5, we went to the clinic and I asked to talk to Dr. B. I asked her if she knows all about the requisitions and she told me that herself and Andrea had a long talk about that. I asked her to tell me what exactly happened. She admitted that the first requisition was lost, she had no idea as to what happened to it, but the second requisition "was sent, but the Dermatology didn't receive it." After a few more minutes of talking she said that she called on a Monday and there was nobody at the Dermatology, so she couldn't sent the requisition and then because she didn't want us to wait any longer she faxed the requisition to a Dr. in Burlington. I didn't tell her that she just told me she sent the requisition but dermatology didn't receive it, but I did tell her that it's very interesting how they couldn't fine anyone in Dermatology on a Monday, because I called on a Monday and they answered on a first ring! And so did booking! Anyway, I walked out after talking to her feeling disgusted by all the lies. And I told her I don't trust them and she had the nerve to tell me that she feels offended by my lack of trust! I told her, very frankly that I would rather sit where she's sitting and feel offended, then sitting where I am and feel everything I feel.
That afternoon the lady in Bookings called the house to let us know that you have an appointment in two weeks with the dermatologist! Finally!!! After 11 weeks of waiting! She told me the Tuesday before that Andrea had faxed the requisition after she talked to me, at 4pm on Monday.
On April 19 we went to clinic and we could've come home as soon as we got the results. Neuts (immune system) were 0! This means for a week we can't go anywhere where there is a crowd, we can have no visits and we have to be very careful. They also told us that following week, which is week 3 of cycle there will be no treatment, but we still go for counts. We still had to wait until 2pm when we had the appointment with the dermatologist. And because of the 0 neuts, we couldn't go anywhere, we just had to wait in clinic. This gave us a chance to talk to Nancy, the child life specialist about some other concerns. We think that there might be some emotional issues going on, because lately you wake up during the night and ask me to hug you; even in the house you want to hold my hand to walk from the living room to the kitchen, you want to play with me all the time, and basically, are stuck to me 24 hours a day! I told Nancy that my guesses would be that either you start understanding more of what is going on, or are just sick and tired of it all and I can't blame you for feeling that; or it might be some separation anxiety, as we started talking more about you going to school in September and you are excited, but could, in the same time, feel anxious, too. Or you could simply picking on my feelings, as I have felt so stressed, so frustrated, so angry lately and maybe you just want to be by my side all the time just to make sure I am fine. Nancy took a couple of hours of playing with you; she made small pieces of paper and you put them in piles; for ex., it was the paper with clinic and that went in the "Sad" pile instantly; or the Mommy, Daddy, Andrea and home papers went in the "Happy" pile. Nancy said she will make me a list with what was on each pile.
We went to see the dermatologist and as soon as he saw your feet he said immediately it was a fungal infection! Fungal infection that takes about 45 days to heal and would've been all gone by now if everybody would've done their jobs. I don't ask the impossible of them, I only wish they would treat you the same way they would want me to treat their child, if things would be the other way around. You are absolutely the most bravest little girl in the world! The Dr. took a scalpel and scraped your heel and you sat on the chair on your own and never moved! He sent the scrapings to the lab, but in the mean time he gave us prescriptions for hand cream and feet cream. He said that for as long as he has been a Dr., he has never seen a patient as young as you with that sort of infection; apparently, only old people get this fungus... So far you had the bone lesions that only teenagers get and a fungal infection that old people get.
On Sunday Madrina and Padrino came for dinner, as per your request. You said we should invite them, because Padrino likes roast beef, so we did. You had a lot of fun playing with Padrino, you probably missed him a lot, it's been weeks since you last saw him. At the dinner table you asked to sit beside Padrino and only talked to him. When I tried to talk to you, you told me that you only speak with Padrino, I have to talk to Madrina. And then you told Daddy to "talk to those people!", where 'those people' were Madrina and Mommy :) When they went home you screamed for about half an hour or so and I noticed your eye lid swollen. At first I thought it was because of the crying, but then I realized the right eyelid was more swollen than the left one. I was hopping it will go down by morning.
We woke up in the morning and your eye looked the same, so I took you to the optometrist. He checked your eyes the put some pictures on and asked you what they were. You just couldn't figure out what they were, so I asked him to show you letters. You saw the letters just fine, so the conclusion was that your vision was not affected. He did say that there is an infection on your right eyelid, but he can not write a prescription, for that we have to go to our family Doctor. I called Daddy about it and he told me to call Andrea. So, I called Andrea. She said that as long as you don't have a fever and it's not swollen shut and it doesn't seem to bother you, we can just go at the clinic in the morning. But if you start getting a fever, seeing how you have no immune system, we have to go at Emerge. We got ready for our afternoon rest, when you said your eye hurts. So I called Daddy, he came home and we went to Emerge. We spent three hours in Emerge and walked out with an 'oral prescription' for eye drops. Daddy said that those eye drops are on back order, so probably no pharmacy has them! Great! I called Carmen, the Pharmacy tech at Daddy's store and she found a store that had them. Carmen is just great! Every time we had any kind of trouble in finding medicine she always found a way to get it for us! Daddy went and bought them, but actually putting it in your eye was a different story! You kept saying you didn't want them, but eventually you did let Daddy put it in your eye.
On Tuesday morning Andrea called to ask if we were going at the clinic and I told her we went to Emerge the day before. I asked her why we are skipping treatment 2 weeks in a row and she told me it was protocol! What??? I've never heard it! And we have stopped the 6MP on week 2 quite a few times before, but NEVER skipped the Methotrexate 2 weeks in a row. She said she'll look into your medical passport and we'll talk about it on Thursday.
On Thu., April 19 we went to clinic for counts, but we wanted to also talk to Andrea and to see a Dr. for a rash that kept appearing on your legs! I mostly noticed it after the bath. Andrea brought your medical passport and in there it only shows that we stopped the 6MP on week 2, once! And we skipped the Methotrexate on week 3 due to low platelets. It is possible that we stopped the 6MP before the CNS treatment, when it wasn't divided in 3 weeks cycles. It is possible, but I am not convinced. Anyway, Dr. B. came in the room, looked at your legs and of course, has no idea what the rashes were. Just as expected. No surprise there.
I told Nancy that I think the problem was actually that you were tired. But last Thursday, I talked to Dr. Jassass and I told her what the counts were and she told me to just check your glucose level at 5am and if it is over 5 to let you sleep, if it's under, to wake you up and give you corn starch. So far, I only had to wake you up one morning at 5am for corn starch. We actually had a morning when it went up, without the corn starch, from 4.7 to 5.2! Or from 4.6 to 4.9! So, you are sleeping, you are well rested and you are not hanging on me all the time anymore. I also tried to calm down a bit, because it's just not right that I get so aggravated for your sake, to defend you and then I harm you on the emotional side. I love you more than anything in this world and I have to stay strong for you! 12 more weeks and we are done!
Daddy was really hoping that On May 3 when we'll start week 1, Dr. A. will be there to come and tell us that they have to decrease the doze of 6MP again. It's just a matter of Daddy's ego, here :) after the big argument we had with her back in February (or January) about the dose being higher than what you can tolerate.
Anyway, I guess it's time for me to come outside and put you on the swing so Daddy can get rid of the weeds in the back yard. Now you are helping him and having loads of fun!
Mommy and Daddy love you very much and so are Madrina and Padrino. Never forget it!