Surgery update and the end of 2011

This morning Raven went into surgery to have her infection site lanced. It was a very quick procedure. I think I was actually in the waiting room for only ten minutes before the surgeon came out to tell me everything went great. He said there was a significant amount of fluid in there and that draining it should make her more comfortable and speed up recovery. I was glad to have it done with.

When we came back up to the room, it was almost immediately clear that Raven was feeling much better. She sat up on her own and giggled and signed for the nurses and me. It was awesome to see that. She actually played for a while and the nurses had a hard time leaving the room because she was charming them. I, of course, had a huge smile on my face the whole time.

After they left, Raven’s doctor came in and told us they sent cultures from the fluid they drained just to check to see if anything else is growing. He said she should be covered with the antibiotics she’s on if there were any results but he thinks there won’t be. He also said that for now we are still scheduled for Monday for the LP and bone marrow biopsy. He says its doubtful she will have the biopsy but he does want her to be able to have the LP and that regardless she will continue on with treatment Monday which means chemo that day.

My mom came over today to keep me company and Raven had fun playing with her too. It was nice because Raven got to sit with her and she laughed a lot while my mom tickled her and sang some songs.

Raven has been in a lot less pain today and that makes me feel much better. She has had some discomfort but that’s to be expected with the infection being surgically opened up. She’s done great though and only needed one dose of tylenol. We’ve kind of swung the pendulum though because the last few weeks we’ve been fighting diarrhea but today she seems to be constipated which is why we chose to give her tylenol instead of morphine. Morphine tends to constipate and we don’t want to add to the problem. We’ve given her some medicine to help her go and now we just wait for nature to take its course. Funny how I never thought I’d be this interested in bowel movements but all this medicine makes you go from one end to the other.

Now we are just laying low for the night and quietly ringing in 2012. I could probably say a lot of negative things about 2011 but sitting here reflecting on the year I chose to focus on the good instead of the bad. For example, this year, once again, I was shown just how much love and support is around us. My family has been there for me every step of the way and they all have sacrificed time and holidays to be with us here in the hospital. The hospital is not exactly the most fun place in the world so it means a lot to us that they would sit with us even through some of the most boring moments. And the outpouring of love and support we’ve received from not just friends but complete strangers has astonished us. It is amazing to see just how many people in the world will offer you support and will go above and beyond to make sure you are taken care of. It was really hard for me to hear we’d be spending Christmas here in the hospital but it was honestly a great Christmas. We were surrounded by love. We had a huge turkey dinner delivered to us and Raven was blessed with many gifts, clothes and love.

I’m not gonna lie- this year has sucked out loud but sitting here now I am grateful. I am grateful for all the support. I am grateful for my family and husband who have been amazing. I am grateful to be expecting my baby boy in May, and most of all I am grateful that even though we’ve had setbacks, Raven seems to be responding well to treatment and is in great spirits and great care here.

Goodbye 2011. I hope 2012 is a much better year. I hope Raven doesn’t have any more setbacks and I hope she continues to do well in this fight against Leukemia.

How quickly things change…..

I guess I shouldn’t be surprised with how quickly things change around here but I really thought yesterday we were seeing the end of this infection. Looks like that may not be the case. Who knows though, really…

Yesterday things were looking great and I updated everyone to let them know what the next few days would look like but shortly after that, things definitely changed. Raven was laying on her back napping and when she woke up the nurse and I went to change her diaper. That’s when we noticed that the site had become swollen and looked bruised. I honestly could have punched something. I knew that was not a good sign…. And on top of the swelling and redness, Raven was in pain. A lot of pain.

The doctors had been trying to ween her off of morphine because it is such a hard core drug but in my heart I knew that’s what she needed. Her nurse and I discussed other options which basically left us with tylenol. Ever since the beginning, I’ve been hesitant to give her tylenol because it could mask a fever and that sort of makes me paranoid. Especially now because of the swelling. I finally decided to give it a try and it looked like it helped a little bit. That was shortly before bedtime. I asked the nurse to call the doctor to keep him in the loop and she did. We decided that since Raven looked comfortable, we wouldn’t give her any more pain medicine.

Then she woke me up twice in the middle of the night screaming so I called in the nurse to give her morphine. She had two doses overnight which definitely seemed to help but around 6 o’clock this morning she started flipping out. The only way I could get her to calm down was to lay her in the air mattress with me. The nurse tried tylenol again this morning and it seemed to make her peaceful enough to nap but we had to give her morphine again around 8.

This feels like a yo-yo. Honestly, I am such a mix of emotions right now. I’m scared that things aren’t progressing the way they should. I’m kind of mad because she shouldn’t be going through this. I’m also feeling helpless because I can’t just make it go away. And I’m tired. Tired of her being sick. Not just sick with Leukemia, but sick with all the infections she’s had already. We’ve spent 32 days in the hospital so far and most of that has been for infections.

I told the nurse I was frustrated this morning and she called the doctor again to tell him it had not gotten any better overnight. This morning, the infectious disease doctor came in and took a look at it and told me that it looked like she did indeed have an abscess which needed to be drained. Then Raven’s doctor came in to look at it and said he wasn’t sure. He said it did appear softer than the yesterday but that he wasn’t sure. He told me that he would consult with the surgeon to find out what needed to be done.

Erik is here this morning with us and we are just waiting around to hear from the surgeon. They may order an ultrasound or they may just take her into the operating room to see what they can drain. To tell you the truth, I just want them to do whatever they have to to make her better. I guess the only thing I can do right now is make sure Raven is not in pain and wait to hear from them….

Our new schedule…

Erik came over this morning to watch Raven so I could go to the doctors office. I’m almost 19 weeks now and a few weeks ago I got a call from my insurance company to participate in a free healthy pregnancy program. I spoke with a nurse who told me that it would be beneficial for me to have progesterone shots weekly because I went into preterm labor with Raven and it would prevent me from doing the same with our baby boy. She said she’d fax paperwork over to my doctor to get things started. When I met with my doctor this morning, I asked about the shots and the paperwork and he told me he had received it and gave me a prescription. He told me once I got it filled we would start with the first shot. I’m kind of nervous because I don’t like needles but I’m also relieved because I do not want a repeat of last time.

When I got back, Raven was sitting up and being really cute with Erik. It was awesome to see. They are really adorable together. He gets her to make goofy faces and do cute things. He always has and I love the bond that they have.

A few minutes after I got back, her doctor came in to check out the infection site. Yesterday we met with an infectious disease (ID) doctor who took a look at the site and was consulted about the antibiotics she’s on. Raven’s doctor said that the ID doctor said there might be an abscess but couldn’t be sure but he was sure that after looking at it this morning it was not there and that she did indeed look like she was healing. He also said that she’s been on the IV antibiotics for six days and he would just continue with them because it did look like it was doing the job. Raven is still pretty tender which he said was to be expected but overall he is very positive with the way she is progressing. Her ANC was over 4,000 yesterday and her white count was up too which was good. She did have to have a blood transfusion though because her hemoglobin was very low.

The new plan for us is as follows… Monday, or Tuesday depending on availability of anesthesia, Raven will go in for her LP and bone marrow biopsy and will essentially bypass the waiting period in between induction and consolidation. Typically it is about a week in between but because she is already behind, she will just go straight into consolidation. She will officially start consolidation and to be honest, I’m not sure how many chemo medications she will then be on. From what I remember, the first day of consolidation is supposed to be pretty intense so I guess we’ll see what happens. The doctor said the only thing that may differ is the bone marrow biopsy depending on how the infection site looks on that day but he thinks by then she will be okay to proceed with both.

Technically, he said that they cannot do the MRD (minimal residual disesase) testing the same way they would have had she had a normal day 29, but that once they do the biopsy they will assess how much cancer is still remaining if any. I know when people hear remission they think everything is fine and the patient is healed. That’s pretty much what I thought but it’s not like that at all. Cancer is a tricky thing and it isn’t one of those things where you can’t take just one reading and know that you are good to go. You have to continue treatment to make sure that it cannot go and hide somewhere else in your body or just come back because you stop treatment. It’s kind of like when you go to the doctor and he gives you antibiotics for ten days but you stop taking them after three or four because you feel better. While you may feel better now, you could end up getting sick again and even worse because your body did not fully get rid of the bug making you sick. Only difference is cancer is a much bigger “bug” which is why she will be receiving treatment for so long.

Overall though, Raven, Erik and I are in good spirits about everything. We know that there will be bumps in the road but we are adjusting as best as we can. We are just relying on her doctors and our faith that she will heal completely.

We did have a few cute things happen in the past few days. The day before yesterday, I met with another mom whose son is 7 and has ALL. He also has Down syndrome and it was nice to kind of compare stories and get to talk about how our kids are doing. It’s nice to know that I have someone to talk to who is a little ahead of Raven and it was nice to see her son too. He looked so good and it was good to see that he was playing with his iPad and having a good time.

Yesterday, my friend Jenn came over and brought over some gifts from a friend of hers in Virginia. I still cannot get over the fact that total strangers want to send their love and support to us the ways they have. Her friend bought Raven some really cute outfits and some Dora the Explorer movies. When Raven saw Dora she lit up and smiled and said “Dora”. Too cute.

To Jenn’s friends Corky and Heather- thank you so much for the gifts! We appreciate them so much and I know Raven will look adorable in everything you sent. She already loves the videos. She’s watching the enchanted forest one right now as I type. Thank you again.

Infection update

Today I decided to do some day after Christmas shopping. I know, crazy, but I needed to get out of the hospital for a while. Erik goes back to work tomorrow and its a long shift so he’s leaving tonight to go home and sleep there and will probably not be back for the next two days or so. Since we don’t really live close to the hospital, it doesn’t make sense for him to go back and forth especially when he’ll be at work until later on at night. That being said, I knew if I was going to get a break, today would be the day.

While I was out, I decided to call and check up on Raven’s infection. Erik told me that it started to ooze. I know- totally gross. Thank goodness I wasn’t there to witness it because I’m sure it would have made me freak out and would’ve possibly made me queasy. I asked him what the doctor said about it and he told me that he said it was a good sign. They had been talking about lancing it so for it to happen by itself is good. Erik asked him what was next and he said basically that they would continue to monitor it to make sure it was draining properly and completely and that it would likely be the end of the week before they even considered doing the bone marrow biopsy or lumbar puncture. The doctor said it would be too risky to try and do it before the infection had cleared up. So now we will just sit and wait for it to go away. We have to clean it out with saline solution and just watch it like we have been.

Erik and I are on the same page with remaining here in the hospital. We think it would be too risky to take her home when she has a now open infection. Besides, here in the hospital we have professionals at our fingertips who will be here to help if need be. I honestly have to tell you that even if they said we could go home tomorrow, I wouldn’t want to just because of my emotional state lately. If anything else happened I would just freak out. So here we stay. I don’t know for how long. We just wait it out.

Christmas in the hospital and more updates

The last few days have been very eventful. Friday, Raven had the MRI and we were nervous to see if the infection was spreading to the bone. The doctor came up to the room about an hour or so after the procedure and gave us the good news that it was not spreading and that it was only in the soft tissue. We were definitely relieved. He also told us that we’d just continue to do as we were doing and check on it to make sure it stayed within the black lines we had drawn around the site. She was only on one antibiotic and not even the antibiotic I had originally thought she’d be on. They explained that instead of going straight for one of the heaviest ones, they would treat her with the same antibiotic, cefepime, which she had been on for the first infection. I was fine with that because the idea of constantly jumping to the strongest antibiotic seems a tad scary and crazy to me.

Then that night, I kept an eye on her closely. Erik left again because we still had not been transferred to a bigger room so there was only a chair that folds to a glorified cot to sleep on. I wished he could have stayed but I understood him leaving and felt okay because I didn’t think Raven would have two scary nights in a row. Around 9-10 ish, I noticed Raven was feeling pretty warm. I called in her nurse who took her temperature. It was fine. For some reason though, she kept feeling hot so I kept asking for the nurse to come in and check. Two times, her temperature went up to around the 99.5 to 99.8 neighborhood which made me a little nervous. We agreed to keep a look out just to make sure she didn’t spike a fever which she didn’t, so I was happy.

Yesterday was a little crazy. When I woke up, I called my mom to see if she’d come keep us company. She brought over breakfast and after we ate, we changed Raven’s diaper. The nurse was in the room so we all took a look at the infection site. We were all excited to see it hadn’t spread at all but had actually seemed to go down more. It also didn’t seem as red. Even still, Raven seemed to be feeling as bad as she had been the previous days. We’ve been giving her morphine for the pain but she is so itchy so we’ve also been giving her benadryl. That seemed to not be strong enough to control the itching so we asked to switch to something else. The doctor decided to try atarax which is much like benadryl. That also didn’t seem to be enough, but we were stuck without options so we continue to just switch back and forth and try to comfort or distract her when we can so she won’t be so miserable.

Around mid-afternoon, Erik tried to sit her up to see how she’d do. She actually managed to sit up for a while, which was the first time she had done so in almost two days. It was cute to see her trying so hard to make cute faces and play with us. It definitely lifted my spirits a bit but after a while, I could tell she had had enough. I laid her down to rest and went out to do some very last minute Christmas shopping.

While I was out, I got a call from Amy who is the executive director of the Down Syndrome Association of Central Florida. We have been communicating back and forth for the last few weeks about this family who wanted to adopt us for Christmas. When she first called me to tell me and to ask me what we needed/wanted, I was a little dumbstruck. I have always had a hard time telling other people what I want for Christmas, that is unless those people are my husband or my mom. I told her Raven always needed clothes and told her about some of Raven’s favorite things. She asked about Erik and I and the only thing I could think of was maternity clothes, books and video games. I honestly wasn’t expecting anyone to adopt us for Christmas and was beside myself that people are out there who want to help us out like that. I definitely was not expecting the outpouring of love we received from them. They even wanted to do Christmas dinner for us! How amazing is that? And such a big relief that my whole family would be able to just get together and not have to worry about anything. Of course we hadn’t planned on spending Christmas dinner in the hospital, but some things can’t be planned.

When Amy said she’d be by around 4:30 with gifts and food, I was expecting just a few things. I had no idea what a huge surprise we were in for. It literally took her and three of her kids to deliver everything. She had a whole, huge turkey with green beans, carrots, mashed potatoes, gravy, stuffing and rolls for us and two huge industrial sized black trash bags filled with gifts along with a card from the amazing family who did this for us. I was beside myself. We opened the card and I was speechless. They definitely went well above and beyond. I can’t tell you how grateful I am for them doing that for us. To say thank you does not seem like enough. I definitely look forward to the day when Erik, Raven and I can meet them and hug them and say how much we appreciate them. Absolutely amazing.

Our dinner was outstanding. I honestly think the turkey was the best turkey I’ve ever tasted in my whole life. We had originally planned to have Christmas dinner on Christmas day but since Amy had to pick everything up on Christmas Eve, I wanted to make it simpler for her and just do dinner that same day. We called Erik’s Aunt Connie, his brother, and his Grandma to come over to eat with us. Unfortunately, they couldn’t all be there but we still had fun and we all ate a lot.

I kept wishing we could have been in a bigger room because it was definitely a tight squeeze with all the presents, food and company. I think I must have asked a handful of times about moving but kept being told the possibility was unlikely. I decided to prepare myself to spend more time in our small room and just move on. After all, we had decorated and made do so far so what was one more cramped day?

Around 11pm, I started to notice Raven getting hot again. I called in our nurse who came in to check her temperature. He did it a few times, once under the left arm and once under the right. Both times picked up an elevated temperature but not exactly a fever. Then about half an hour later, he took it again and this time it had spiked to 101.1- definitely a fever. I was pretty bummed because I didn’t want anything else to be wrong but he reassured us it was probably just Raven’s body doing exactly what it should by fighting the infection. He told us that often times, infections create temperatures and that the sites of infections tend to look more inflamed and sore before they end up getting better. He also told us that her white blood cell count was up and so was her ANC which was a good thing. We also gave her another dose of morphine to help her sleep more comfortably and we chatted a little bit before he left. I don’t know how it got brought up, but I mentioned again that I’d like to have a bigger room for Christmas. He told us that the bigger room we had stayed in for the majority of the time we’ve been in and out of the hospital had just opened up and that it needed to be cleaned but that as long as nobody else needed it before it was cleaned, we could have it. I was so excited I think I actually screamed a little. I tried not to get my hopes up but couldn’t help it. I’m telling you, it’s the little things now that mean so much. Like moving five doors down to a bigger space. I actually calculated that we have spent 28 days here already. 28 days. That’s not including our two trips home. That’s just nights and days we’ve actually spent just here. So a bigger room means a lot. Especially when we have a big family who wants to be around to support us. Still, I tried to keep myself from getting too excited because the nurse did mention that there were three kids in the emergency room and should one of them need the room, we’d be out of luck. I finally stopped waiting around for him to come back in and around 12:30 am, I went to sleep.

At 2am, I was woken up to him telling us the room was ready and we could move in. I woke Erik up to help me and I’m telling you it was a Christmas gift all in its own. We moved our stuff and settled down for the night.

This morning my family came with breakfast and gifts for Raven. We had bagels and I decided to try and hold Raven. I changed her diaper and noticed that infection seemed much worse than it had the day before. I picked her up and sort of frantically called in her nurse to take a look. She agreed with me about the infection looking worse and she called the doctor. She came back to tell us that he’d be in to look at it and decide what to do.

When he came in, he looked at the infection and agreed that it did look worse but confirmed what the nurse said about the white blood cells doing their job and fighting the infection. He confirmed that often times fever and inflammation can be a “good” thing because it means the body is doing its job. Although I am no fan of fever or inflammation, I took this information and decided to relax. He told us that he would add another antibiotic to be safe that would work in conjunction with the cefepime to fight the infection. Then he left.

We finished breakfast and opened up gifts. We were literally opening gifts for around an hour when we decided to stop and wait for later to open more. I’m not kidding when I say Raven got everything she could have ever dreamed about for Christmas. And it was really cute to watch her clap and be excited about everything she saw. I think she may actually have a few favorites already.

When my family left, we had some nice down time to just read, relax and enjoy each others company. Then this evening, Erik’s side of the family showed up and we had a great time playing with Raven, opening more gifts and just talking. We are so blessed to have a lot of family here to be with us. We have a lot of family who are out of town who we’d love to see more often and wish we could’ve had Christmas with this year, but to have this support here is very nice.

Erik and I are not sure what comes next for us in the next few days. I’m pretty sure it consists of just watching the infection to see how it reacts to the antibiotics and make sure its going down. After it goes down, she will pick back up where she left off with the end of induction. Then we get a small week long break and it’s back for round 2 of this process.

This morning and what we expect for today

I fell asleep last night next to Raven last night in the hospital bed because this room is very tiny and there’s only a chair to sleep on. Since we’ve been in rooms like this before and we know how uncomfortable it can be, Erik decided to spend the night at his Aunt’s house which is about 10 minutes away. This morning around 1:30, I woke up and sat straight up almost in a panic. What was I doing, pregnant, sleeping next to her with an e-coli infection? I buzzed the nurse in immediately and started asking questions. She told me that because Raven was on antibiotics, the only precaution I needed to take was to make sure I washed my hands really well. Although we were close, we weren’t really snuggling because she is in so much pain.

I fell back asleep and around 4am, the nurse came in again. That’s when things got a little crazy. She and I noticed that Raven sounded stuffy with a very wet nose. She decided it would be best to try to use the bulb syringe to extract as much as we could. I told her it would be worse if she did it so I tried and immediately I could tell there was more up there than the bulb syringe could get. I asked her to use the powered suction tube and the second she put it into Raven’s left nostril, it started bleeding. A lot. I couldn’t help but get anxious and so I sat her up immediately as much as I could. That sucked for her not only because of the nose bleed, but because of the pain from the infection. She is in a lot of pain. Even with morphine. The nurse grabbed some hand towels and looked into her nose and noticed a big blood clot. She managed to get it out and right away you could see Raven start to breathe better and the bleeding stopped. Raven was obviously nervous because her heart rate jumped up to 200 which is very high. I tried my best to comfort her and sit her in my lap but because of the pain, I could only get her into an awkward hug. It took everything I had to stay as calm as possible and just rub her back. I knew if I cried because I hate seeing her like this, it would only make things worse. The nurse moved onto the next nostril and got out another big blockage (no blood this time) and Raven started breathing more clearly.

Then she started signing “eat.” I asked the nurse for spaghetti-o’s which have been our go-to meal here and she brought them right in. Raven managed to eat a lot of them and right after had a huge diaper explosion. I know. Snot, blood and poop is probably exactly what you want to read about, right? I changed her diaper and I could tell she was in so much pain. Pain sucks. Especially when it’s your child your watching go through it… It took a little more time than usual to change her because I didn’t want to hurt her but I finally got it done and went to scrub down with antibacterial soap and sanitizing foam.

After that, I noticed she started rubbing her nose a lot. I had talked to the doctor the other night and he told me itching was a common reaction to morphine. He told us to giver her benadryl so I asked her nurse for it. We gave it to her and within minutes, she was asleep. I on the other hand, had a lot of anxiety so I tossed and turned and tried not to let my thoughts get the best of me. I finally fell asleep and woke up this morning to a much more peaceful baby girl which was nice.

The doctor yesterday had mentioned Raven would need an MRI to see how/if the infection is spreading or how its doing in general. I asked the nurse what time it was scheduled and she told me that it was scheduled for 9-ish but because I fed Raven around 4:30, it had to be pushed back to 12:30 today. She needs to be sedated and they want 8 hours of no eating beforehand. I wish the nurse would have told me that at 4am this morning but things happen so now we wait.

Raven is sleeping peacefully right now, only waking for moments here and there when there is a loud sound or the nurse comes in to do vitals. I know the sleeping is a sign of just how bad she feels. Throughout the last three weeks or so that we’ve been here, she has never slept this much so I know her little body must be exhausted. I just hope she gets more sleep and stays as much out of pain as possible until the procedure this afternoon.

The nurse yesterday drew a circle around the infection so we could tell if it was growing. So far, it has actually looked a little bit smaller which is good but it’s really red and definitely inflamed. The fact that it looks smaller comforts me a tad but the real thing I’m concerned about are the test results today. I will feel more comfort when they tell me everything looks okay. For now, as it has been for many weeks, we sit and wait…

Today sucks… a lot

Today we were supposed to come in for a routine lumbar puncture, a bone marrow biopsy and two rounds of chemo. After the last time, I was primarily concerned with what her blood counts would reveal. I worried that her platelets may crash and that she would need a transfusion. I also worried about the site of the last bone marrow biopsy because it was infected. I never thought it would get this bad. I had hoped that the current antibiotic she was on would be enough to fix the problem. The words of my sister-in-law rang through my head this morning telling me to always be prepared to be admitted even if what we are going in for is just a routine procedure but with us having been here for the last three weeks, we literally had nothing to wear. All of our clothes were sorted on our living room floor waiting for us to get back tonight to get started washing. Something told me I should have been more prepared but there was part of me that was just trying to be as positive as possible. I guess part of me just felt like there was no way we’d be spending Christmas here.

I was wrong.

When Erik put her in the car seat this morning she arched her back and we could tell she was in pain. Then when we got to the outpatient room and I tried to hold her, I could tell she was still in pain. She actually peacefully slept for about two hours which was nice and I felt like she’d be okay and that everything would be normal and we could go home. We’ve been changing the dressing on the infection for a few days and putting antibiotic cream on it to make sure that nothing else got in so I hoped that and the medicine would be enough.

The nurse drew her blood and we waited while she slept. Then around noon, she came back in to tell us Raven’s platelets had gone from 40,000 to 79,000 which I was grateful for. Like I said, that really was my main concern but still in the back of my mind I worried about the infection. Then around 1:45, I carried her into the outpatient procedure room and laid her on the bed. Erik and I were addressing our concerns about the infection with the nurse, mainly because of the pain factor, and the doctor overheard us. This was not the doctor that saw her the other day and since technically he isn’t her “primary” oncologist, but just one of the three who attend, he wasn’t fully aware of all that was going on. He listened to our concerns, took a look at the site, and then immediately got on the phone with her primary doctor. I could sort of overhear him as he spoke to her. I heard the words “e-coli”, “not responsive to keflex” and “cipro” and I immediately started to panic. I seriously felt like I couldn’t breathe and that for a second I would be in danger of just freaking out. Erik and the nurses tried to console me but I just knew it wasn’t good and that the pain meant that the infection had done exactly what we didn’t want. I knew that meant serious antibiotics and a hospital stay and when the doctor came in to confirm I barely heard him. I just started crying and all I could think and say was “it’s too much.” Too much for a little girl to go through and too much for us too. We have been miserable watching her be in so much pain, so cranky and just generally unhappy. It’s for sure not anything like our little girl and I know that Erik and I both feel the same in that we wish we could just make it all go away. It sucks. A lot. I know though that she is in the right place and that she will be taken care of. These doctors are on top of this already and that puts me at ease a little bit. There’s really nothing in this situation I can control so I’m trying to just ride the wave but lately it’s been pretty cruddy.

So now I sit here, watching her sleep, and I pray. I may not pray in the conventional way, but I just send out all I can muster right now. I hope tonight she can get some more rest and be relatively pain free. They have her on morphine but even still you can tell she’s bothered by the slightest touch. I know so many of you pray everyday for her and I know I’ve been asking for a lot of different specific prayers but for all those asking what you can do for us, this is it. Pray for little to no pain. Pray for a speedy recovery for her. Pray that the infection does not spread and pray for some sense of peace and strength for Erik and I and our family as we go through this. And for those not into the prayer thing, just keep her in your thoughts. Positive thoughts and energy can have a powerful effect on the world.

Day 29 moves to Day 30

I was meaning to write yesterday but just couldn’t bring myself to do it. As I’ve mentioned, this is definitely a rollercoaster and lately I’ve been on the down side. I took Raven to the doctors office yesterday to follow up and to talk about a few things. I wanted to first address the bone marrow biopsy site and the possible infection growing there. The doctor told me that yes, Raven does have an infection growing but that the culture had not yet revealed what it was. He told me that once they figure out exactly what it was that she would either remain on the antibiotic they prescribed her already or would change it to a new one that would fight this infection. In the meantime, we are to just continue with the current antibiotic and make sure we clean the site really well and put on antibiotic cream secure with gauze and tape to make sure nothing else can get inside it.

After that, he left for a bit until the cbc (complete blood count) results were in. I had a bit of a scare there too for a few minutes. The nurse pricked her finger and put just a few drops of blood into the test tube, cleaned her off and put a pretty Hello Kitty bandaid on her but then as I held her close and tried to comfort her, I could feel blood dripping on me. I immediately called in the nearest nurse to tell her what was going on and all I could think was that her platelets had dropped so much that she was bleeding dangerously from just a pin prick. I guess everything lately is making me much more nervous than it ever would have before, but to be honest I’m sort of terrified that anything else could go wrong. I just feel like it’s already too much for one tiny little girl to go through so it’s hard for me to think of anything else, even just another platelet transfusion.

It actually took the nurse about 5-10 minutes to get her to stop bleeding and get another bandaid on her finger. She also managed to get all the blood off of me too and by that point I could tell Raven was getting very tired. She gets pretty worked up now whenever a nurse or doctor comes into the room and with all that’s going on lately, it makes her tired easily.

After the nurse got us both taken care of, she left and Raven and I were left alone for what felt like forever. When the doctor finally arrived, I was kind of holding my breath. I was expecting him to say that she needed a platelet transfusion but to my surprise, he told me that her blood counts looked good. He said her platelets were at 40,000 and her ANC had gone up to 400. When we left the hospital, her platelets were at 20,000 and her ANC was very low, I think around the 100 mark. 400 is still very low but it’s moving in the right direction so I’m happy about that. He also gave me a run down of the next phase of Raven’s treatment called consolidation.

Consolidation, he told us, would be intense… and he wasn’t lying. He handed me the road map and I could barely make out what it was because there was so much on it. Basically to break it down a little, Raven’s consolidation will be over a 59 day period and she will be receiving six different chemo medications, some of which will be administered on only a few days, but some she will have to take a lot. One will be taken every day for the first two weeks. The doctor says that day 1 of consolidation will start either one week from tomorrow or when her counts go to 75,000 for her platelets and 750 for her ANC. He also told me that day 1 will be an intense day basically spent entirely in the hospital. There were new medications to go over too and he told me that one of them has the tendency to have fevers as a common side effect and at that point I couldn’t help but joke with him that I should basically just plan to spend all of January in the hospital. He joked back and told me I should plan on February there too. It was a light hearted moment but it did make me wonder what the next two months would look like. I quickly tried to dismiss the thought so as not to worry too much.

We moved on and started talking about days 28, 29 and 30. Technically, yesterday was day 28 which means that today we were supposed to take Raven to get her bone marrow biopsy, lumbar puncture and two more rounds of chemo and that this would be the big day for test results for the end of induction. Because there was nobody from the anesthesia team to sedate Raven for the procedure, we have to wait until tomorrow morning. We need to be there at 8:30am because they want to avoid a repeat of last time. He says they are going to check Raven’s cbc in the morning to make sure her platelets are still up and that they can proceed and if all goes well she will go in around 11am to have all the tests and chemo. The good news is that because yesterday was day 28, she can stop taking the steroids which have been really putting her in a bad place lately. It feels like with each passing day on them, she was getting more and more irritable and seemed to be in more and more pain. I am very grateful that she won’t have to go on them again for a while.

When were were done with our break down of consolidation, the doctor left and sent in one of the nurses to go over the medicines and side effects and to make sure I had a plan of the next week and I was comfortable with all that was going on. I must say that so far I have not met one person in the office who I didn’t like or who I didn’t feel like would do anything to make us comfortable and happy.

During some of the wait time in the office I got to thinking a lot. The office overlooks downtown Orlando and yesterday it was absolutely beautiful outside. I couldn’t help but feel like the weather was mocking me. Yesterday was a hard day for me because I thought with induction done, I could finally sit back and breath and have a lot less to deal with but it seems as though the next two months will be a lot of in and out to the hospital and not at all what I thought it would be. I actually started crying a little but tried to pull myself together because I know that Raven is so strong and will get through this and that we can too. She is already doing well despite the fact that you can see she is miserable most of the day. She seems to be responding well to treatment and I am thrilled about at least that.

This whole process has definitely made me think of things a lot differently lately. I feel as though often times we let our lives consume us and we tend to complain about such trivial things. I’ve been trying to use this blog as a way to update you all and not as a way to complain about our circumstances because I know it could always be worse and that to complain is to not realize just how good we have it. It seems like every day Erik and I are reminded how much love surrounds us. You all have shown us such an outpouring of love and support and I have to tell you on days like yesterday, it makes me feel like even though I may have downer days, I have people to talk to and who will take care of us when we need it. Thank you again and again for everything. I feel like thank you is not enough.

Home for the holidays?

Last night at about 8:30, Erik, Raven and I got home from the hospital. It was odd to finally be back. I honestly didn’t even know what to do first. I wanted to do so many things but since I knew it was late, Erik and I put Raven to bed and decided to rent a Christmas movie. To tell you the truth, it hasn’t felt very much like Christmas to either of us. Everyone has been so wonderful and generous and we are trying to get into the holiday spirit but it’s been hard to when we’ve been in the hospital for so long. It feels like we had Halloween and then the time just went flying by.

About a week ago, maybe a little more, I made a makeshift Christmas tree out of construction paper and some glitter. By the end of it, it looked like a glitter bomb had exploded in our hospital room. I also made Christmas stockings out of the construction paper for us but I have to say I really have missed the real thing. Even still, when we got home I decided not to even bother lighting the tree. I think even though we are home right now, I don’t really want to get my hopes up about staying here for too long. I think I’ll be unsettled until we make it to Wednesday or maybe even Thursday and Raven is still fever free and okay.

Last night was also weird because since it’s been so long since we’ve been here, I almost didn’t know what to do before bed. I checked both doors to make sure they were locked and then went to our room but felt weird and excited at the same time to not have to be bothered in the middle of the night by alarms or IV beeps or woken up to Raven crying as the nurses just try to help her out or take her vitals. I know Raven really appreciated being here though because she slept very soundly. So soundly in fact that I had to actually jostle her a little to make sure she was okay. She was and after I put her pacifier in her mouth, it was back asleep she went.

Like I’m sure I’ve mentioned before, this whole thing has been a rollercoaster of emotions. There have been times where I’ve been happy because I know she is doing so well even though she is cranky or I know she doesn’t feel well but there have also been times where seeing her like that has put me into a sort of depression. I think it’s harder too because I’m way more emotional because I’m pregnant. I keep reminding myself that it could be worse as I often do when times are hard. It was easy to recognize this while I walked past all those doors in the hospital with children far sicker or much younger than Raven.

I think if I sound a little more depressed right now than usual it’s because I’m a little scared. Raven has had five diarrhea diapers today and as I was just changing her I noticed that one of the puncture wounds from her last bone marrow biopsy seems a lot redder and puffier than the other two. I just got off the phone with the doctor who says he will call in a prescription for an antibiotic cream to put on the site but he also said that if it looks like Raven is continuing with the diarrhea diapers and not drinking enough that she will have to be re-admitted to the hospital. The thought of that is enough to make me cry right now.

I was counting her beads of courage today and she has 87! That’s a lot. 87 beads in three weeks. That’s 87 things she’s had to endure. 87 is a lot for anyone let alone a two year old who can’t even vocalize how she feels. It’s heartbreaking when you think about it. But again, today I will just pray for no more trips back to the hospital and repeat to myself “it can always be worse” because it can.

Hopefully it won’t…

The haircut and our progress

Wednesday I woke up to a cranky little girl. I immediately got up to comfort her, and as I stood next to her crib, I noticed that there was quite a lot of hair around her pillow and on her hospital gown. I sat her up and was sort of startled to see just how much hair was laying in a halo around where her head just was. I actually had to brush her bed to get it off and even that didn’t pick it all up. I combed her hair with my hands and it just started coming out. A lot. I immediately called a great friend of mine who cuts hair and was the one who gave Raven her first haircut to see if she could come over and take care of business. I must admit that I was actually in a sort of panic to get it done. I just had this fear of it continuing to fall out in clumps and I didn’t think I could take that. My friend said she couldn’t do it that day so I racked my brain trying to figure out what to do. I even thought about doing the deed myself but hesitated because I didn’t want the doctor or nurses to say anything so I called in Debbie who is the child life specialist here to see if she had any suggestions. She has been amazingly helpful this entire time and has been the one to put us in touch with the Give Hope Foundation and another trust fund that helped us pay for my transmission to get fixed. I knew if anyone had ideas it was Debbie. I talked to my girlfriend just to let her know that I was looking for someone to do it immediately and told her that if we couldn’t find anyone that I would need her help and she agreed to be there just in case. Debbie told me of a spa who sends employees out for free to the hospital to give haircuts and said she’d get on it right away. Then later that afternoon she came back to tell me that the manager was out of town and that the assistant manager was unaware of the free haircut policy and wanted to charge us $50. She said she’d try to remedy the situation and so I continued to just wait. Then yesterday she came by to tell me that she cleared everything up and that the only appointment available was Monday morning. She said she had scheduled it but hoped that we wouldn’t be here then to take advantage of it. I agreed with her about not wanting to be here still and told her to keep the appointment and that I would call my friend to see if she could come by sooner. It turned out to be another big hair loss day and by the end of the day I could see patches of hair gone from my baby girls head. I didn’t even have it in me to call my friend until about 9:30pm to leave her a voicemail about the situation and by that time I figured for sure it was too late and that I would have to wait until Monday. Luckily for me, I have the most amazing friend ever  because she called me and agreed to come over first thing in the morning.

This morning I woke up to her phone call saying she was on her way here and by 9am she was there and ready to go. It turned out to be perfect timing because again, as I sat with Raven waiting for my friend to get here, more clumps of hair started coming out in my hands. I wasn’t sad anymore but determined to get this haircut over with. To “rip the bandaid off” so to speak. I guess what kind of put me in a funk over the whole thing the last two days was not the actual hair loss because I had already cried over that, but the fact that it was a reminder of what is going on. I know it may sound weird but it’s kind of easy to put things out of your mind when nothing is really going on. I mean for the past week the only thing we’ve really had to deal with was Raven’s stomach bug and taking antibiotics and steroids which have become second nature now so the hair loss was a slap back to reality that not only are we taking medicine, but we are in a major fight here.

After Raven had a little breakfast, it was haircut time. She sat on my lap while my friend clipped away. I thought Raven would be more traumatized by the situation and just start screaming but she took it like a champ and that saved me from tears I know. She was being so brave and I was so curious as to how she’d look without all that beautiful hair I’ve grown to love so much. When my friend was all done I just looked at Raven and smiled. She is the most beautiful little girl even without the hair. The only thing that did make me a little sad about the whole thing was that losing the hair meant losing a security blanket for her. I’ve noticed for a long time that Raven loves to twirl her hair. She does it all the time. It actually used to drive me crazy because I’d put her hair in pigtails and she’d twirl it into a mess. She even started to do it more once we got to the hospital and I wondered if that was because it was the only thing that might have felt good to her. Since we’ve been here, she’s even started to let me brush her hair without complaints or tears and let me run my fingers through it too which never used to happen before all of this, so losing the hair was kind of like losing a little comfort for her. I can tell because she’s tried to twirl it today and hasn’t had anything to twirl and so she just pats her head and looks sort of confused and sad. I hope that she won’t miss it too much.

About her progress here- the doctor took her off the ampicillin which was the antibiotic we were supposed to go on at home but couldn’t because it only lasted for an hour and we couldn’t be released with it. He says that Raven will continued to be monitored for at least 24 hours to see if taking her off will not set her back. Today was day 10 so he says that it should be enough time to have done the trick. He has her on another medication for the diarrhea and says that he might discontinue that too in the next day. If all goes well than we should be home by Sunday. He did warn us that if she does go home and spikes a fever that she will have to be re-admitted so I am praying that she will be right as rain for a long time. It will be so nice to go home and finally sleep in my own bed after two and a half weeks here. For those of you praying, say some to keep us home for Christmas and for no fevers!

Tuesday marks day 28 which is the last day of induction and that means Wednesday we will be back her for Raven to undergo another spinal tap, bone marrow biopsy, and more chemo. Again, for my faithful friends, pray for the best results possible for day 29. It would mean so much to hear that she is clear of this first step.