Okay, so technically, yesterday was the first day of the conditioning phase to prepare Sarah for transplant, but the BMT team in their infinite wisdom decided to add an extra day since Miss Boots' transplant specimen will not be arriving until late on the 28th, so they decided to bump it until the morning of the 29th. This does nothing for my nerves, this adding of the day, but it did make the transition a lot smoother and easier, I must say, because yesterday was relatively uneventful. We came in, they got us registered and up to the room in record time. They put her in Room 308, the spacious room with the great view that she was in for Round 2 in January/February. They took an abdominal ultrasound, hooked her up to the monitors, gave her fluids and antibiotics for her infection, and IVIG, which is IV Immunoglobulin, a blood product that boosts immunity. Apparently, this stuff is super expensive because it's genetically engineered from horse DNA or something. They wanted to put her on it monthly, but it's somewhere around $10,000 a dose, so obviously the insurance didn't want to pay for it, and fortunately she has been able to get by without it thus far.
So, the IVIG was the biggest part of yesterday. They gave her pre-meds, Benadryl AND Tylenol, because one or the other just isn't enough to prevent a reaction anymore, and it knocks her out, so she was out by 7:30 after throwing a raging fit because she insisted on changing her own diaper in a drug-induced stupor. Yeah. That was fun. Anyone who knows my little Bossy Boots knows that it is NOT a good idea to let her fall asleep before 9 PM. Anytime before that, and we can call it a nap, because she sleeps from one to three hours and then she's bouncing off the walls all night long. No, thank you. Well, pre-meds or no, the rule was no different for Miss Boots last night. And while I was smart enough to understand in theory that I should try to take a nap myself while she was sleeping, my body would not cooperate, because I haven't gone to sleep at 7:30 since grade school, probably not even then, since I was the "read with a flashlight under the covers" kind of kid. So, true to form, she was up by 11:00, bounced off the walls until I finally put my foot down at 2 AM and told her she at least had to lay down and watch a movie, and then she finally knocked out. I was then able to go to sleep, and the I was never more grateful for the quiet of the OICU.
Today is day 2, or T-9, the first official day of chemo, complete with premeds (maybe I'll be tired enough from last night to be able to nap when she goes down) and I am trying very hard to keep it together. I am terrified of what is to come. There are just too many variables, too many things that could go wrong, and I am feeling lost and alone. I don't know how to fix this. This little girl thinks that I control absolutely everything. That's a lot of pressure. There is that looming thought that this could be the beginning of the end. What if this is all the time we get? What if these are the last moments I get to spend with my daughter?
It was with this very thought in mind that I made the most out of the week we got to spend at home. The very first day, mere hours after they released her, we went to Toys R Us to spend the $100 she had saved. My grandmother gives her money every time she sees her, which is every day since she is currently staying with us. Sarah has apparently inherited my propensity for saving, and for shopping. I offered her the option several times of giving the money to my mother to take to Target or Toys R Us on her behalf to buy the "needed" items to complete her Lalaloopsy collection, but she insisted each time on spending the money herself. Since we spend more time at the hospital than at home, and since shopping trips with Sarah are not always an option because of her counts, the money just kept adding up. So, when they released her this time and her counts were through the roof, we went immediately to Toys R Us and spent double her budget on nothing but toys, courtesy of Grandma who put in the other half. That was Monday.
Tuesday and Wednesday we just kicked around the house, and she played with her new bounty all day long, even managed to log in a few minutes outside playing in the yard in the fresh air and sunshine. Thursday, I had to take her back to the OPI to get a Bone Marrow Aspirate and a Lumbar Puncture, both diagnostic to ensure that she is indeed ready for transplant. These are procedures, they require anesthesia, and to get two in one day is a heavy load for a four year old, but she came out of the anesthesia crying, saying she wanted to get on Small World (her favorite ride), wanted to go back to Disneyland. It broke my heart, because she has been wanting to go back ever so badly since she got re-diagnosed in December. She has been watching youtube videos non-stop of the rides. And I got to thinking in that moment, with this transplant, it will be at least a year before I can take her anywhere, especially Disneyland. Now was the perfect time. I asked the nurse, who is one of our favorites, and was one of Sarah's first nurses from her ALL treatment two years ago, said that she didn't see why not as long as we took the proper precautions. She even gave as much as she could to prepare us for a trip that I had not planned on: hand sanitizer, masks, even a blanket and a turkey sandwich! She double checked her counts in the computer, and said that she trusted me because I am not negligent or careless in any way with my daughter, and she knew that I would take the proper precautions. She thought it would do Sarah a lot of good. So I took her. We got on all her favorite rides, I got in every single line she told me to. I had to force her to stop to eat! We even met the nicest man on the tram, who gave her an Aurora Christmas pin (Sarah loves the pin collecting thing. She refuses to trade them because they are hers) which she dropped somewhere and we never recovered. I lamented the loss, because the pin was obviously irreplaceable, not only because it's a collector's item, but because the man gave it to her out of the kindness of his heart on such a special day, and I wanted it as a memento for her. I said a quick prayer to St.Anthony for it, and went about the rest of the day, enjoying the time alone with my daughter at our favorite place.
You will never believe what happened. Towards the end of the day, while we were crossing over to California Adventures to get on the Ariel ride (another must for Miss Boots), I ran into that same man, and before I even had a chance to tell him that she had lost the pin, he pulls out his case and gives her an Alice pin, and the young couple he was with gives her a pink Minnie head with a princess crown on it. Where she lost one, there came two from the same source to replace it, that St. Anthony works fast! :)
It was a wonderful day. The last ride of the day was the giant ferris wheel with the swinging buckets, and the best part was hearing Miss Boots laugh hysterically every time the bucket would slide. While it earned me a tongue-lashing from my husband for putting her in "harm's way", it was worth it to see how happy it made her. I couldn't even really tell you what all we did, or even any details about what was going on at Disneyland that day. I spent the whole day watching her face. She was so happy, and I am so grateful that we got the opportunity to go. It will give us both something to hold on to for a very long time until this is all over and we can go again.
Friday, a photographer from JC Photos came to do a photo shoot of Sarah at the house. He had offered to do it before, back when Sarah was first in treatment for this secondary AML, and I put it on the back burner because she was having such a hard time and we were in the hospital with not enough time at home, so I didn't think it was a good time. Then with this stay, I started thinking that this was a turning point, for all of us. Things are about to change from here on out. Our lives are about to get a whole lot more complicated, and yet, this is the fire we have to walk through to come out cleansed and renewed on the other side. One way or another, Sarah will never be the same, I will never be the same, and they say that transplant is a sort of rebirth. So I wanted to commemorate the old life, while ringing in the new. I haven't been able to have professional pictures of Sarah taken since she got sick. I think the last portraits I have of her were when she was 18 months old. It was time. So through a friend, I contacted the photographer, he came out, and he took the most AMAZING photographs. They are gorgeous! They are so much more beautiful than what I expected them to be, especially since Miss Boots got no sleep the night before and she was tired and therefore less than cooperative. Jesse, the photographer, was amazing with her. A father of two himself, he got right down on the floor with her and played, snapping a picture here and there as the mood struck him. The results were breathtaking. See for yourself...
So that brings us back to the now, where I am scared out of my mind, and Sarah is none the wiser playing with her new Lalaloopsy magnetic paper dolls, that she bought with her own money. All she really knows, although she understands plenty, is that we have to be here, and she's bored. I explained to her about the transplant, and that's why we're here, and that we will be here for a long time, but the ramifications, the side effects, the dangers, those I kept to myself. It is my job to weather that storm alone, keep her happy and occupied, make this as easy as I possibly can, push her when she needs it, acquiesce and be patient when the need arises. Above all, I want to keep her as happy as I can, because if these are her last days, I want them to be good ones, for both of us. I want to know that I did everything I could, that I said yes enough, that I said no enough, that I didn't give up but that I knew when to pick my battles. After all, isn't that the secret to life?