Monday -- September 29th
Sorry for not writing sooner, but it has been a hectic weekend with lots of ups and downs.
Maddie is fully engrafted and her counts are continuing to improve daily. Her white blood cell count is up over 5,000 and her liver, heart and kidneys are all functioning well. The big issue continues to be with her lungs.
Since coming back from ICU Maddie has been on an oxygen mask continuously. Her breathing is still labored and just that simple effort takes a lot of energy out of her. Usually she is only up for 30 minutes to an hour before she becomes tired and falls back to sleep. On Saturday she was especially worn out and didn't have the energy to talk or even watch tv.
Sunday it looked like things were improving a bit. Our nurse Caitlin had been working very closely with Maddie on her breathing exercises and Maddie was feeling good enough to even make a few jokes once in a while. It seem we were making some progress, however slight it might be.
Around noon we were sent down for another chest x-ray to see how things looked from the inside out. The doctors who read it felt there hadn't been any progress and were concerned things were not moving in the right direction. To be safe they informed us they were scheduling Maddie for a lung biopsy today or tomorrow.
To say Kristen and I were devastated would be an understatement. It was a blow neither of us could imagine and our hearts broke knowing this would send Maddie back to the ICU and another intubation.
Fortunately, with a lot of prayers and a big helping hand from our nurse who worked incredibly hard with Maddie on her respiratory therapy throughout the rest of the day, the doctors decided this morning to hold off and see if Maddie can work through this on her own. They have also added two new antibiotics and we are hoping this will help her turn the corner.
Despite these challenges Maddie has started to take an interest in food again. Over the weekend she sampled Cheerios and an ice cream nibble and tonight she even went so far as to try out a McDonald's grilled cheese and fries. She doesn't take more than a bite or two of solid food but she has fallen in love with chocolate milk which she is drinking regularly.
Maddie's art fans will be pleased to know that one of Maddie's pictures
has been selected for the Children's 2009 calendar. I was informed it will be on either the front or back cover. I don't know when it will be available but as soon as we find out we will put up a posting.
Friday -- September 26th
Wednesday night was a much more restful night, after getting the tube out. Maddie slept a little more comfortably and I did too. I was able to sleep on the window couch for the first time, as opposed to where I had been sleeping – on the foot of her bed! I had been sleeping like an old faithful dog, curled around her feet. I was so afraid she would wake up during the night and not be able to call for me while she was intubated. The window couch was positioned behind her bed, so we couldn’t see each other from there. I wanted to see her face the whole time and I wanted her to be able to see me too. So, Maddie faced away from the window, giving her the view of her door the entire time. Who designs these rooms?
Thursday morning Maddie was doing a little better. We were able to take some of the IV lines out as the morning went on. Ernie came in around 11. He was so thrilled to see her extubated and looking so much better! I hung out with them for about an hour and a half and then I had to go. It was so hard to leave her, but I knew she was doing better and that she would be going back to her room that afternoon!
Ernie said Maddie was nauseous throughout the afternoon on Thursday and just extremely exhausted.
They got back to the 6th floor in the late afternoon! Maddie was so happy to be back in her cozy room and slept the rest of the day.
Thank you to all of the ICU team. They were so wonderful to Maddie and took such amazing care of her!
It’s Friday now. Maddie is doing okay. Still tired, nauseous, and on the oxygen mask. Good thing is that her counts are 4000! Yahoo! She is considered engrafted and can go out in the garden whenever she feels up to it! We are so excited for that day!!!
Thank you to all for your constant love, support, and prayers. We hit a bump in the road, got passed it, and now we’re hoping the rest of the trip will go smoothly!
Wednesday -- September 24th
We have been here in ICU for three days now. I ended up staying here with her.
During the night, Maddie was slightly weened off the ventilator support a little more, as they had been doing each day, and tolerated it well. Well enough that she was extubated today around 3:30! It was a long, tough, exhausting, day for her, but she did an awesome job!
She had to have a biopsy done on her leg, so they could take a look at her rash. She was sedated for that and was left with three stitches in her leg that will come out in about a week.
Maddie's blood pressure continues to run very high, so they are working on keeping that at an acceptable pressure.
We still do not know the cause of her lung infection. Her cultures for different things have all come back negative so far. They do think she had a bleed in her lungs that may have kicked this whole thing off but they're still not sure. It's so frustrating not knowing what is causing the infection because until then, we don't know the best way to treat it. We hope to get some answers as the days go on.
Maddie will hopefully be going back to the 6th floor tomorrow! She is so happy they kept her room for her and they are all anxiously awaiting her return. We got visits from our 6N and 6W nurses throughout our stay. They made us feel so loved and watched over. Thanks every one of you who took time out of your busy days to come visit and check in on Maddie! Our nurses here in ICU have all been wonderful too. Maddie is in good hands.
My sister and Mom came to visit today so they could sit with Maddie and I could go take a shower. It was great! Ernie will come in and switch out with me tomorrow. I am so excited to go home, see the boys, and go to bed! I'll sleep now that Maddie's extubated and on her way out of ICU.
When the night charge nurse came on duty tonight, she stuck her head in and said, "I just want you to know that I have been here for 25 year and your daughter is the bravest kid I have ever met." I was so proud when she said that, but of course, I already thought so too. She went on to say how impressed she was that Maddie was so slightly sedated throughout her intubation and most kids have to be heavily sedated just to tolerate the whole situation. Maddie was so calm, cooperative, and strong. In fact, most of the doctors and nurses made the same remarks.
It has been a very long haul and I pray it can only go up from here!
Monday -- September 22nd
Maddie's counts were at 1510 today. Unfortunately Maddie's lungs were not responding to the treatment she was receiving as we had hoped for. She quickly declined and had to be rushed to the OR this morning to have the procedure done. They actually wanted to bring her down to the ICU last night, but we held off for as long as we could.
I had just gone home yesterday and so badly wanted to get back in this morning on time before she went under, but I didn't make it. Maddie's nurse, Caitlin, stood in for me with Ernie. It was so sweet of her to do that. I got here just after she went in.
They went in and looked at her lungs, took a biopsy from several spots, and intibated her. It can take weeks before the biopsy cultures grow out completely, but we're hoping to get a preliminary of what kind of bacteria, virus, or fungus, may have caused Maddie's severe infection. Once they know the cause, they will know how to treat it.
We will be in the ICU until Maddie is strong enough to be extibated and taken off of the ventilator.
Right now she is doing a lot of the work on her own, as far as breathing goes, but she is being supported by the ventilator.
Maddie is sedated, her eyes are closed, but she can hear us talking and squeezes our hands. She was trying to communicate something to us and we finally figured it out. She wanted a mirror to see her face. She wanted to see the tube in her mouth. So, I showed her with a mirror and then she wanted to ask something. I held a piece of paper in front of her and she wrote, barely legibly, "How will I eat?" I think she thought the tube would be in for a long time. Then she wrote, "I can't swallow."
Maddie's still fighting! She had an itch on her head and wanted to scratch it. It was hard for her though, because her arm is strapped to a board for her IV's, so I said, "Maddie let me scratch it for you." Well, she waved my hand away as if to say, "I can still scratch my own damn itch!" And she did! Board and all!
She is sleeping now and nurses and doctors come in constantly to monitor her and suction her lungs.
We had a visit from our 6North nurse, Chris. It was so nice of him to come down. We also got a visit from our doctors, Simone and Dr.Grier. Beth came in to lend us support too. She's awesome...
I'll stay tonight with Maddie and we'll see how the next few days go, as far as Ernie and I switching out.
Please keep the prayers coming in.
Sunday -- September 21st
Maddie's counts continue to climb. Today she was at 740. Two more days over 500 and she will officially be considered engrafted. Her rash is starting to abate as well and she looks so much better. The one issue she continues to face is with the fluid in her lungs. They believe it is caused by an some sort of infection and she is on oxygen to help her breath. Earlier today she went and had a CRT on her lungs. Based on the findings they want to take a biopsy so they can target exactly what it is. We expect that to happen tomorrow sometime before noon. We hope it will be a quick procedure without any complications. Please keep her in your prayers.
Saturday -- September 20th
This morning, when I was standing over Maddie's bed, watching her, I caught myself doing the "Mommy rock." You know, when you rock back and forth when you're holding your child? I think all Moms do it, and we're not even aware of it most of the time. Well, I can't hold Maddie, but I still felt the need to rock. You just feel so helpless and the only thing you can do is rock. I even rock when I'm sitting on the edge of her bed and she's sleeping. I don't know, I guess it's just what we Moms do to make our children feel loved, feel better, be comforted. Maybe I'm comforting myself too? I don't know...
Maddie had a really rough night last night. Her oxygen stats dropped all night long and the team of doctors were in and out of the room. She had to have a chest xray done and it showed that she does have some fluid in her lungs. She got platelets and medication to help her body rid itself of the fluid in her lungs and in her skin. The platelets suck extra fluids into the blood stream, away from where it shouldn't be, and the medication then helps her body flush the fluids out.
Maddie has been on an oxygen mask since last night. She hates it! We went through three different options before we found one that suited her!
This morning, the team of doctors came in to check on Maddie first for their rounds. As Ernie said, the later you are on their round list, the better you're doing. Unfortunately, we were first, and there was talk of Maddie going to the ICU. When you get to a certain point of respiratory distress, and the machines here can only deliver so much oxygen, you have to go where they are better equipped to handle it.
Maddie got very upset. A nurse from the ICU came down with a special oxygen mask for Maddie, to see if it could deliver the amount of oxygen Maddie needed to have, in order to stay on this floor. So far, it seems to be doing the job. She has kept it on, along with other monitors, and for now, we're staying put!
We don't know how long she'll be on it. She has to be able to hold her stats at a certain number without the oxygen and right now, the minute she takes the mask off, her numbers drop. She'll have to do lung exercises until her lungs get stronger. Her body is tired, she's tired, but I'm praying she'll get stronger as her counts come in and this will all fix itself.
Her counts bumped a little bit to 300. Yeah! Slowly, but surely!
On a positive note, her skin is looking SO much better! The rash is leaving her face and going south. That's how these rashes leave, they go south. So, you can see it moving down. Some of the puffiness in her face has even gone away. On Thursday, I slathered her with Aquaphor Cream and wow - it made a huge difference! She was peeling like she had a left over sunburn all over her body, and the cream just really helped calm her skin. Of course, Maddie hated the cream too! She kept telling me she felt like a big grease ball. That's ok - it worked! She even let me slather it on her again tonight.
A doctor just came in again to check on Maddie. She listened to her lungs and says she sounds the same. We'll have to treat this for several days and just hope for the best. She went over several scenarios with me, but we'll just take things one day at a time.
Think I'll climb into bed with Maddie and slowly rock us to sleep.
Friday -- September 19th
It was a fun couple of days spent with the boys before I came back in yesterday, Thursday. Thomas is doing great on his bike. He learned how to turn - Thank Goodness! It got a little nerve wracking watching him head straight for the sandbox or tree before purposely falling to stop!
The boys and I have all had fun playing baseball every day. I pitch and they hit. They've gotten really good!
I will stay in with Maddie until Sunday.
Maddie has had a couple of really tough days. When your counts start to come back in, you actually feel worse before better. Maddie's rash had taken over her whole body, she continues to fever off and on, she has body cramps that keep her up all night long, and on and on...she really is a mess, but is doing such an incredible job of staying strong and fighting, never complaining.
Maddie's counts actually dipped a little today. You want to see them go up every day. The doctor said we'll see this. The counts may go up then come back down again. We are so anxious for her to get to 500 and stay there for three days. When she does, she'll be able to go out into the garden with a mask on! I can't wait for her to feel the sun on her face and smell the fresh air again. It's been weeks.
Yesterday, our friends ,Val and Liz, stopped by to visit after Val's check up at the clinic. She looks so beautiful! It's so good to see our old friends from the hospital looking and feeling so great! Maddie wasn't feeling well during their visit and fell asleep after they left. She even had to turn down a visit from Caroline, who was in clinic for a check up as well.
Today Maddie felt well enough to sit with Jared and make a wallet out of duct tape. It's very cool and she made it for William. He'll love it. He's always looking around the house for an old discarded wallet to call his own. You know, he has so much money to carry around.
We got a visit from our clown friends today. They always cheer Maddie up and make her smile. They're so funny.
Since you all loved the safety pin through the finger gag, I have to share an even better one we pulled off before I left last week. It's a little more crude but so worth sharing! We asked our nurse, Bethany, to help out again. Maddie pulled the "Fart noise blower" from the gag box. The two of us went into the bathroom and shut the door. We had Bethany grab our nurse, Brinn, out in the hall, and tell her Maddie was sick in the bathroom. We heard Brinn come into the room and Maddie started the fart sounds. She groaned "in pain" after each toot and I stood there telling her, "It's ok Maddie. Let it all out." We went back and forth for a few minutes, trying so hard not to laugh, knowing Brinn was out in the room listening. Finally, Brinn nevously asked, "Is everything ok in there?" I said, "Not really. Maddie's really sick right now..." Maddie kept groaning, and then we lost it! We couldn't go on any more and came out. Well, you had to see Brinn's face! Oh man, it was priceless!
Maddie hasn't been up to any practical jokes since then, but she'll be back to her old self soon.
Right now she is on oxygen. Her oxygen level has been dropping down pretty low over the past few hours, as she is sleeping. We're keeping a close eye on her.
I read Maddie's cards and letters to her earlier today. They truly make her feel so loved and thought of. Thank you to everyone for sending them.
Wednesday -- September 17th
More steady improvement. Yesterday Maddie ate 3 small bites of soggy Rice Krispies. She hasn't eaten for almost 3 weeks and this was a great step forward. She had tried over the weekend but her mouth was still too sore to swallow any food. Last night they switched out one of her medications which we believed was tied to some severe pain in her knees. This had been happening each night around 10:30 and the other night it was particularly bad. It also affected her rash and you could literally see it spreading across her arms, legs and hands. With the new medication she didn't have any pain and her rash shows slight signs of improvement. This morning I was particularly thrilled to see her ANC counts had risen from 80 to 160...so Kim, you better start on those Hail Mary's. After Maddie ate last night she became quite nauseous (I've written this word so many times now I may actually be learning to spell it correctly without having to look it up) and we were up until 5 this morning. She's spent most of the day sleeping but she did manage to get out of the room and walk the hallway a bit. They are starting Maddie on a new medication today to help her make more antibodies. This will also help her lose the water her body has retained. She's retained so much fluid in the last couple of weeks Kristen has twice had to buy new clothes for her. Thanks for all your cards and comments. We love reading them.
Tuesday -- September 16th
Despite some on again/off again fevers and a severe rash that makes her look like a purple version of the Michelin tire man, Maddie continues to make progress. Her blood cultures have remained negative (meaning there is no source of infection for her fevers) and her counts are slowly coming in (the new bone marrow is starting to produce cells). When I left for home last Thursday her ANC counts were 30. Over the weekend they were 60 and yesterday they were up to 80. They don't consider you engrafted until your ANC counts have been at 500 or more for three straight days so we still have a ways to go.
It's a tough phase to be in. Her counts are low enough so they can't fight infections and heal some of her mouth sores. At the same time, as her counts are slowly starting to rise her new immune system is attacking her weak spots making things like her rash spread angrily across her body.
Despite all this Maddie's spirit continues to dominate. It's not even close to being broken and she accepts the situation whatever the moment brings. She always has a smile for visitors and musters the strength to welcome them no matter how tired she is feeling. There are times when she is almost back to her old self for a couple of hours. We hope the days will slowly start improving as we move ahead. As we've said before there is nothing going on that isn't unexpected. Difficult as this is, we are grateful for this. As always we thank you for your prayers and messages of support. They are true gifts of inspiration and love.
Friday -- September 12th
Switched out with Ernie yesterday. We did our usual exchange of information and off he went. Maddie slept for most of the afternoon. We had a few guests stop by, but Maddie was sleeping during some of their visits.
We got a visit from Beth, who popped over with coffee. Two of our nurse friends from 6N, Anna and Abby popped over. We love seeing them. Next, Kelley and Karen Bernard stopped in after Kelley's check up at the clinic. She looks great! Then, our friend Nancy Serafini, stopped in on her way out to dinner, with some very special gifts for Maddie. Lastly, Simone stopped in to work on their nightly project. Maddie was so sleepy and Simone got paged, so they will see each other tonight.
In between the crazy afternoon of visits, Maddie perked up after everyone left and opened the gift from Kelley. It was a box of jokes! We had SO much fun with the fake safety pin! We put this fake safety pin on Maddie's thumb, so it looked like it was going throug her thumb. Then we dropped some fake blood on it and put some drips on the blanket. Next, I dropped some fake tear drops on her cheeks with the saline syringe. The scene was set!
Our nurse, Bethany, helped us out and called another nurse, Maura, in to help with the emergency! When she came running in, Maddie was "crying" and I was kneeling next to her bed holding her hand, calming her down. The whole trick went off so perfectly when Maura came running in and tried to handle everything , until Maddie pulled it out and we all started laughing! We then did it to another nurse, Jackie, who was absolutley shocked! Our act got better each time! Eventually the whole nursing staff was in on it and we were all cracking up! They were still talking about it today! It was so much fun!
Maddie was up a lot during the night with pain in her legs. They actualy did and ultrasound of her legs yesterday afternoon to make sure there were no clots. Everything looked fine. There could be a few explanations. Her body is completely covered with a terrible, dark red, raised rash. It's very uncomfortale for Maddie and they're still switching some meds to find the cause. They're going to start her on a steroid tomorrow to try to help calm the rash.
Maddie had a visit from two clowns today. "B," her clown friend from The Hole In TheWall Camp, was one of them! Maddie was so excited to see him and they shared many funny stories from camp. The other clown presented Maddie with an official clown nose. She was very excited.
Kevin came by again today to do another painting with Maddie. She sat up and lit up when he showed up. Wait until you see this one! She made it for Ernie because he likes the water and boats. I'll have him post a picture when he comes back in. I watched her do it - she really does these! It's unbelievable!
Our friend, Kristina Eisnor, came by to drop off a gift and say hello. I wasn't in the room, but ran into her out in the lobby. It was so nice to see her.
Maddie felt ok for a quick visit to the little playroom across the hall later this afternoon. She had everyone in there cracking up. It was so good to see her out of the room, enjoying herself. She got very tired and didn't feel well, so we came back to the room and she has been sleeping ever since.
It's 8:30pm right now. I'll have to wake her soon to try to get her to take her medicine. It's getting harder and harder to get her to take them, so if I start nagging her now, they might be done by midnight!
Maddie is still bottomed out, no counts, no immune system. They said it could take atleast another week before we start to even see any counts coming up. It's such a long wait. Once her counts start to come up, she will start to feel a little bit better each day. We are REALLY looking forward to that!
Our male nurse, Chris, from 6N, just popped in to say good night.
We feel so loved and cared for by all of our past and present nurses, child life specialists, and everyone who we have met here over the past two years. They all genuinely love Maddie and care very deeply for her. That is such a wonderful feeling and we're so grateful.
Tuesday -- September 9th
I can't believe how fast the time is moving. Today is day +10. They count your days here forward from the date of your bone marrow transfer. So the day before the transfer is day -1, the day of the transfer is day 0 and everything beyond is day + whatever. Sort of like BC and AD. This is a really difficult time for any transfer patient. They have no counts to fight infections and their body is in complete chaos from all the chemo. It is a very tough grind but everything that has happened so far is as expected.
One way of determing how you are actually doing is by watching where you fall in the cycle of the daily rounds. Each day a team of doctors examines all of the patients. They start with the sickest first, then move on to the next. You can see them standing outside the patient's rooms conversing and making notes before going in to visit. Typically they have been showing up here late in the afternoon. Given they start at 8am and there are only a dozen rooms I guess we are doing pretty good.
Of course just after I wrote this Maddie got very sick again. Her fever is back and she has been quite sick throughout the night. Her body is covered with a deep red rash. They still haven't found out what is causing the fevers or the rash. They switched out one of her antibiotics to see if that would help.
Tomorrow Maddie has one small last chemo push to keep her marrow from coming back in too fast. It will make her mouth sores flare up even more and she will probably continue to get neausous, but from there on out things should steadily start to improve as her final counts come back in over the next couple of weeks. Thanks for all our support and keeping us in your prayers. It is a great feeling to know so many people are in this fight with us.
Monday -- September 8th
The weekends are so quiet here on the floor. It's pretty quiet every day, but weekends even more so.
We have Caitlin for our day nurse this weekend and Bre for our night nurse. They're both great!
It's such a different atmosphere over here on 6 West, than it was on 6 North. Granted the floor rules are more intense because the precautions are so much greater, but I have just found it to be very isolating from a social stand point. All of the parents would walk in the hallways on 6N, chat in the kitchen, get together in the resource/family room. We met some of our best friends there. Here, the kids are not allowed to mingle, for fear of germs, so the parents are all doing their own thing with their own child, but I still don't understand why when I even pass another parent in the hall or kitchen, nobody wants to talk. I've said hello several times and get only silence in return. It's very strange. I'm fine with it though. I actually try to find the humor in it. When I'm met with silence, I'll even answer myself back for them.
Here's another good social outing here - going to the "laundry room." Can someone please explain to me why there are ony two washers and two dryers for the entire hospital?! You have to run down with your stuff, hope you get lucky enough to get a washer, then time it so you beat the other person to the dryer! Well, I ran up and down to the first 3 times before getting lucky to get a washer and dryer that were free. I threw a load into the washer and was going to put the load into the free dryer than put my next load into the washer. In other words, I had dibs on this set. I was "qued up."
I timed it perfectly and ran back, only to find a woman had just taken my dry clothes out of the dryer, placed them on the dirty table, took my wet clothes out of the washer, put them on the same dirty table and put her stuff into the machines! No way! Where did she even come from?! Now, I'm never confrontational, but she tried to pull a fast one, I was tired, stressed, and Maddie needed me back in the room. So, I simply looked at her and expalined the deal. She said my clothes had been dry for a while, that she had been watching. Really? I don't think so! I timed it perfectly and my clothes were still hot! Told her I was not going for it and actually asked her to take her clothes out of the dryer. She did, and I put my wet clothes in, took my dry clothes, and walked out, letting her know I'd be back in 72 minutes, when my load was dry!
The whole way back to the room, I kept asking myself if I was wrong to have her take her clothes out. I decided I wasn't. In fact, I think I might write up a "wash room etiquette" instruction sheet and hang it in there!
Lots of rambling on about that. Just having fun with it and passing the time, bear with me...
Maddie, fevered throughout the day again yesterday. Fevers as high as 104 degrees. It was hard watching her shiver and shake, and try to get comfortable. She has been fevering since Wed, but today they haven't been as intense. I was getting very concerned. The doctors added another antibiotic to try to cover every angle. So far all of her blood cultures for infection have come back negative - thank God. Her fever is most likely, hopefully, a "normal" part of transplant.
Yesterday, Beth stopped by after work for a quick visit. Maddie had to take some medicine while she was here and said she would do it only if Beth, our nurse, Neusa, and me, all wore one of the "barf buckets" on our heads, clean ones of course, and danced. So, we all put our barf bucket hats on and danced, partly out of desperation to get her to take her medicine, and partly just because we needed a good giggle. It was pretty funny. I got a picture. Right after Maddie took the medicine, she got sick. It's really a hard process of getting her medicine down and keeping it down. She fell asleep right after that.
Maddie is still in a lot of pain and doesn't talk much - unless she needs to get a point across. She did just that last night. Our night nurse, Bre, and I , were trying to cheer Maddie on, get her to swallow her medicine. Bre kept talking and cheering Maddie on, when Maddie shot her a look. Bre said, "OK, I'm gonna shut up now..." Maddie, still looking at her, her eyes half closed from exhaustion, simply said, "You do that." It was just so funny but probably one of those, "you had to be there" moments for anyone reading this. Well, Maddie got her point across. Bre and I laughed about it, after Maddie fell asleep.
We're still tweeking Maddie's pain medication and others as well. It truly is a process. Maddie continues to fight to get better and get home. She is on a mission and she is determined, brave, and amazing! She still sleeps much of the day and today wanted me to stay in bed with her and snuggle. I usually snuggle in bed with her throughout the day, but today, every time I moved to get up, she woke up and asked me not to go. So, I sat there for hours, as she slept with her head on my shoulder, reading my book on Lourdes miracles. It's a beautiful book. I'm still holding onto our gifts from Lourdes and think about the wonders every day.
Friday -- September 5th
The boys had a great first day of school. Both came home smiling, very excited about their new teachers and friends. Thomas doesn't start until Tuesday, the 9th.
I had a nice night wth the boys on Wed., before coming in on Thursday. We enjoyed the last swim next door and then spent the rest of our time teaching Thomas how to ride his bike without training wheels! He was so excited! He called Ernie to tell him all about it.
Got the boys off to school on Thursday, then took Thomas in for the ride to switch out with Ernie. Despite my cold sore, I was allowed back in , on medication, and having to wear a mask for a few days. Thomas was so happy to come with me because he hadn't seen Maddie since the day she left home. I wanted him to be able to see for himself where Maddie is, so he would have a better understanding. I had him wear a mask too, just to be safe.
When we walked into the room, Maddie woke up and saw Thomas standing next to her bed. He said, "Hi Maddie, I missed you." She looked at him and said, "You have your mask on upside down!" She adjusted it on his face and they just smiled at each other. Thomas didn't stay long. Ernie and I gave each other the latest updates on both ends, and then they left. Not before Thomas grabbed the bag of candy off the shelf to take home! Maddie can't eat it anymore.
It was hard coming back after only a few days, and seeing the changes in Maddie as the whole process is taking its toll on her. Her hair had started to really come out in the middle of the night Wed, into Thursday. When I got there, Maddie and I talked about it, and as we had done together almost two years ago to the date (it was 9/23/06), I shaved her little head again. As I have always said, she is the most beautiful bald girl I've ever seen.
Maddie had a pretty bad night last night. She fevered all night long and was very restless. It's getting very hard to get her to swallow her medications. Her mouth and throat are so painful and she is very sleepy. We had worked on learning how to swallow a pill, using tic tacs, when she was first admitted, so some of the meds are easier than others to get down. Thank goodness the majority of them just go through her central lines.
I want to let all of you who have asked for earrings know that we have added your name to a list. Maddie was so excited when her business took off so quickly. Unfortunately, right now, Maddie has been too tired to make anymore, but we will do our best to get them done as she recovers.
I have been asked for Maddie's address by some of you. She loves receiving cards. Here it is:
Children's Hospital Boston
Madeleine Savoie 6 West
300 Longwood Drive
Boston, MA 02115
Wednesday -- September 3rd
Back to school today. Michael and William were pretty excited to go. Thomas and I walked them to the bus stop this morning to meet up with the other neighborhood kids. So hard to believe the summer has come and gone. I was really sad to see them go, but happy they will have their school and friends to focus on again. Both boys waved with huge smiles as the bus pulled away and William even blew us kisses.
Ernie has been too busy with Maddie in the hospital to write, so I thought I’d give a quick update:
Maddie’s oxygen level has been dropping when she lays down or sleeps, so she had a chest xray done today. They think that is due to the break down of her mucous lining and excess of mucous. If it keeps up she may have to sleep with an oxygen mask on her pillow, blowing oxygen towards her.
She got a fever yesterday, which has been continuing off and on, and she is now on antibiotics along with the all of her other medications. Her blood pressure has been on the high side all day so they are watching that to find the cause and control it.
Maddie is having a really rough time, but continues to impress everyone with her spirit, despite her discomfort.
Two great stories to share to showcase Maddie's spirit:
Kevin, the resident art therapist, came to Maddie's room today to paint a picture with her. He had promised he'd come back when he came by the other day, since she was too tired to paint. Ernie said Maddie mustered up all her strength and painted a beautiful painting and the minute Kevin left, she collapsed from exhaustion.
This one's even better! The day I was in and Michael got to stay, this man, Bob, I think his name is, came by to do a character sketch of Maddie. She insisted Michael be in it with her. He was a little put out. Nobody else had ever requested that and his time was limited, but he did it anyway. Well, when he started to draw Maddie, he asked me for a picture of her with hair. I was so surprised and hurt that he would ask that and not paint her how she is today, but didn’t want to say anything without knowing Maddie's feelings and draw attention to it, so I handed him a picture. When he left, she told me to rip up his sketch. She was so mad and hurt by what he did and said the picture wasn't her because she doesn’t have hair! She said he had done the same thing last year when she was in. That's just wrong. Anyway...
Ernie told me that Bob came back again to sketch her today and again asked if he could sketch her. Maddie said, "Only if you draw me as I am!" Well, Ernie said Bob looked surprised, perhaps perplexed, and he said,"OK, I'll draw you bald." Maddie said again, "No. I want you to draw me as I am!" So, Bob drew her as he should've, exactly as she is, not with hair, not bald, but exactly how she is, with a little bit of her beautiful hair! The way he should've drawn her the first and second time! I LOVE THAT!!! That's my girl! I think that story is SO awesome!
I am hoping to get back in tomorrow and switch out with Ernie, but I’m waiting on a call from the doctor to confirm that it’s ok. The morning after I got home, I woke up with a huge cold sore on my lip! Can you believe it?! The last and only other time I had this was when Maddie was first diagnosed with cancer two years ago. Guess it’s the stress. So, now I’m on medicine for this, but might still have to wear a mask when I get back in. If Maddie were to catch this virus it could make her very sick. It’s crazy!
I took the boys next door for the last swim of the year. Our neighbors are closing their pool this week.
So, that’s the scoop for now. Please keep Maddie in your prayers.
Tuesday -- September 2nd
Maddie is still holding her own and she has a very positive attitude despite all of the mouth sores and other issues. They've increased her pain medicine several times and she is extremely tired, but she loves getting text messages and cards from her friends. We've been working on a fairly complex 250 piece jigsaw puzzle Val sent us. It's made from a picture of Maddie, Michael and myself at the 2007 PMC Pedal Partner party at Fenway. We're having lots of fun working on it and last night Maddie suddenly decided she needed to get up at 3am to do more of it. I was so tired I ended up putting Michael's ear on Maddie's head. It fit but it looked pretty silly in the morning.
Thought I would take a moment to talk about the American Express Members Project, an online initiative that allows cardmembers and noncardmembers to vote for projects that would make a positive impact on the world. American express will fund five winning projects; the top project will receive $1.5 million, the second place project will receive $500,000, the third place project will receive $300,000 and two additional projects in the Top Five will receive $100,000 in funding. I'd like to throw out a pitch for Global Cures, which is working on developing therapies for cancer with combinations of generic or unpatented substances.
Most laboratory research that generates ideas for promising therapies is funded by the government. Pharmaceutical companies then conduct clinical trials to get FDA approval. Since clinical trials are expensive, only lab work with patent protection is singled out by commercial enterprises for further investment. This scenario has left behind untapped opportunities: potential therapies based on substances that were never patented or generic drugs that could be used for new indications.
If you are interested you can click on the following link http://www.membersproject.com/project/view/W7DZSG It doesn't cost anything to vote, although you may have to register as a guest to do so. There are only a few days left in the first round of voting. In order to make it to the next round of voting, the project has to be in the top 25 voted projects. We'd love to have your support and get this project in the top slot.
Monday -- September 1st
I have to say I was pleasantly surprised when I took over for Kristen yesterday. Our hospital room has definitely had a major makeover since I was there last. Bright colors, posters, stackable shelving, whiteboards and bedside tables had all been used to convert our simple hospital room into a warm, welcoming place. I don't know what Kristen's dorm room looked like in college, but if it was anything like Maddie's room it was the obviously the social center of floor. One can only imagine what she will do to me (I mean for me) if I ever end up in a nursing home.
Maddie has been holding her own. Last night she took her first few pills rather than some of the icky liquid medicine she has been taking. She did a great job and hopefully it will make things easier for her. She continues to have issues with nausea, pain and some extremely annoying itching. We still haven't figured out the cause of the itching yet but they have replaced her morphine with another product and she is wearing my t-shirts for pajamas. Both seemed to have helped a lot. Have a great Labor Day.
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