Preston's fight against Acute Myeloid Leukemia

It has been a week since my last update but Preston is doing much better, in fact, we got to come home for a few days.  We came home today and the plan is we will be going back on Friday to start round 5. 

Preston finished his last dose of antibiotics this morning.  The doctor's decided to treat his line infection with medication and hopefully we will not have any problems with it and not need to have it removed before we are all done with his treatments.  He is doing so much better than he was a week ago.  He is eating a lot more.  Yesterday we brought him a cheeseburger and he called it his cheeseburger in paradise.  We have been listening to a lot of music lately and that is one of the songs he loves.  Another one is Yellow Submarine and he knows a lot of the words now so my goal next round is to get it on video. 

Stephanie had an ultra sound on her kidney's Friday so hopefully we get some good results back from that this week. 

Abigail had a dance recital on Wednesday which James took video and was awesome.  She is so cute.  She does tap, ballet, and gymnastics and during the tap part, a girl fell and Abby stopped, ran over, helped her up, asked if she was ok, and ran back to her sport and continued dancing.  She is going to do this class again over the summer and then take a break for the fall since she wants to take ice skating lessons and will be going to school 3 days a week.  I wish we could do it all. 

On Wednesday also, the nurses unhooked Preston for a while from his tubes and we went over to the cancer clinic.  The Houston Dynamo hold an event called Bald is Beautiful and Preston and Abby went over to shave a few soccer players hair.  Preston shaved Danny Cruz's hair and Abigail shaved Danny's and Mike Chubala's hair.  It was a lot of fun.  There were 6 players that day that had there hair shaved and the kids loved it.  It is so great that they would do that to show support for all these kids and us as parents.  It was great.  Here is a video and picture of Preston saving Danny's hair that was in the Houston Chronicle:

http://www.chron.com/news/photogallery/Dynamo_shave_for_charity.html#21817474

http://link.brightcove.com/services/player/bcpid51421175001?bclid=0&bctid=88281438001

On Saturday, Abigail, Stephanie, and I went to the Bald is Beautiful event before the Dynamo game.  It was great.  There were a lot of people there with raffles, people  raising money to get other people's head's shaved, food, and in a weird sense, it did feel like a family reunion like Dr. Thompson said.  It is still so weird to go and have Dr. Thompson tell our story to other people or for myself to tell our story.  I still can't believe we have a story.  After the event we went to the soccer game which was a lot of fun.  We sat with some of the nurses of Preston's and we just had a great time.  I really wish that Preston and James could have went but we have plenty of time for that. 

Also this past week, Build A Bear came to the 9th floor and every kid got to get a bear (or animal) with outfit.  We went and both Abigail and Preston was so excited.  Abigail picked out a Hello Kitty and rubbed the heart they got to pick and put inside.  She picked a hula outfit for Hello Kitty.  Preston picked a tiger with a Darth Vader outfit.  I was so surprised that they offered to give one to Stephanie.  I was not expecting that but I let the kids pick her's out.  They picked a monkey, Abby picked the heart and Preston picked a cute outfit with roses on it.  They loved there animals and it was fun.  Thank you Sunshine Kids and Build-a-Bear. 

So it was a busy week and although we will be home this week, it will be another busy week.  Tomorrow we are going to relax, play, watch Abby swim.  Wednesday Preston has to go into the Allergy and Immunology clinic and be skin tested against vancomyacin and other drugs in the cillan family.  We also have to go to the cancer clinic and do labs.  Dr. A wants Preston's anc to be around 1000 and his platelets to be around 100 before we start chemo.  His anc is 670 but his platelets are 33.  Then Thursday, home care will be coming to change his bandage and we have a delivery coming and then spend the rest of the day relaxing.  Friday, we go back to clinic and do labs again and possibly be readmitted.  If his counts are not where they need to be, then we go home and be readmitted Monday.  I have mixed feelings about which day but either way, this is Preston's last round, round 5.  He is an incredible, strong boy and I can't wait for this to all be done.  Another 4 to 6 weeks hopefully, and then we will be home for forever. 

I just want to share one more thing, last night on the car ride home, Abigail said to me "mom, do you want the good news or the bad news", I replied the bad news.  She said "The bad news is, if Preston gets to come home, it will take longer until we are home for forever".  I then asked her what the good news is and she replied with enthusiasm "Preston gets to come home".  She is so right and then I kept thinking all night about how smart she is.  She is 4.  What 4 year old can tell you the good news and bad news side of things, can grasp the concept of her 2 year old brother being sick, and can think about time.  I am amazed at her and how smart she is.  I am so proud of how well she is handling all of this and to have them both home together playing could not have made me happier today.  Preston came home and it was like he never left, he would go to his playroom and bring out a toy and say "I just new it".  I can't wait until the next time we go home it will be for forever!!!

 In round 5, the Doctor's and social worker are going to submit our paperwork to Make A Wish.  Preston's top wish is to fly in a helpicopter over a volcano.  How nice would that be.  I guess we will see. 

Oh, and big news today for Stephanie too, she rolled over for the first time (back to front).  We were getting ready to leave and she was laying on the hospital bed, and she rolled.  Sad to think a little bit that her firsts have been all in the hospital room so far but that is practically where she has been raised so it is also fitting.  I have to say again, we can not wait to be a family of 5 at home for forever!!!!

So the rest of this week has been pretty crazy.  Wednesday Abigail had an appt. at allergist for her skin test.  The poor girl told the doctor's as soon as she walked in that the only thing she didn't want to be allergic to was dogs.  Well she is very allergic to dogs, along with trees, grass, and pollen.  She looked at the doctor with her hand on her hip and said "you're kidding right".  When the doctor told her no, she looked at me, stomped her feet and said "mom, you got your wish, now I want mine-I want a toy".  Now she keeps asking me why I had to take her because if I didn't take her, I would not know she was allergic and she could still get one.  With her asthma and her IGE levels the doctor's  recommended we really not get one so we will not. 

On Thursday, Abby had another appt. with the dermatologist and then yesterday, Stephanie had surgery to have her ear tag removed.  She is doing great and has 3 stitches and both girls are so super cute.  This week at the Gap, we go there every Wednesday to use 40% off regular items and Abby likes to get a new dress, we bought matching outfits for the girls and they are adorable together. 

Bad news is that Preston got sick.  He went 16 days with no anc and started running a fever Thursday.  It stayed around 100 for about 6 hours and we were praying it was really nothing.  Well that night it spiked and he was started back on antibiotics and fluids.  He threw up a few times but then I realized it was because he was not put back on zofran so once he started getting it, he stopped.  They drew cultures and we were shocked to find out Preston has a line infection---again!!!  At first I was happy again to know it was an infection instead of something we didn't know what was going on and then I was happy to think it was something not caused by us since we try so hard to keep him from getting sick.  Then I was angry.  This is an infection that could have been prevented and now my son is laying there with 105 fevers and miserable and he is not going to be able to get a break before we start round 5.  I woke up this morning and was angry again and to stay positive, told myself that the next time my child gets to go home, it will be forever since most likely he will not be able to go home between rounds.  The question is if he will need to have line replaced.  He still has no anc but he has had monocytes the past 2 days so hopefully he will get an anc in the next few. 

Just wanted to share other things that have made us laugh this past week:

Abby in Target the other day was asking me "mom what did  my uncle give to aunt to make that baby"  Everyone turned and looked at me with a smile who was around us and I said what.  She repeated the question and I asked her what she meant.  She replied with "did he give her an x or a y, is the baby going to be xx or xy, I have to know".  I was shocked and so were the people around her.  A guy came up and asked how old she was and he was even more shocked when I told him 4. 

A few days ago we went to McDonalds to grab something to eat and there was this lady in front of us that looked very pregnant.  Abby tapped her and asked her what she was having.  The lady told her she just had a baby the day before. 

Abby looked at me and whispered "I think she still has a baby in there, do you see that belly".  The lady could hear but I explained to Abby that your belly does not deflate once the baby comes out and she patted my belly and ask if that is still what is happening to me.  I told her yes and laughed but then the biggest grin popped up on her face and she said very loudly "you never know mom you could have a baby in there, you didn't get your tubes tied".  I was so embarrased when about 20 people looked at me all smiling. 

Preston has also been teasing his sister a lot and it makes her mad.  He really knows how to puch her buttons.  For some reason she hates the bathroom door being all the way closed and every time she would go in there and the door would be cracked Preston would laugh, run over there real fast, slam in closed and then run back like he had no idea who did it.  Abby would get upset, screaming from the bathroom and it was hard not to laugh. 

Preston has also found it very funny that Stephanie loves to stand or try to sit up.  When she is standing we joke saying she thinks she is so cool and that she is queen.  She stands and she is so happy smiling a lot.  When she is propped up , she trys to pull her self up to sit.  Preston thinks it is really funny because she gets herself up and then topples over.  He asks me to put her back so he can watch her do it again and again.  Poor Stephanie. 

Thank you everyone for your thoughts and prayers.  We are so thankfull!!!  Please continue to pray that Preston breaks these high fevers soon and starts to feel better.

We are still here at TCH waiting for Preston's counts to recover.  He has been at 0 now for 12 days.  It is so hard I think this time with the waiting since he feels so well, which is wonderful, but it just makes us a little more impatient.  Every morning when they draw labs at 4am, we are saying extra prayers he will have monocytes again and hope we get a signal they are coming soon.  Today we spoke to the doctor's and they are confident they will be up soon and have went ahead and scheduled him next bone marrow aspiration for Wednesday, the 26th.  It is hard to think about starting round 5 when we haven't even finished 4 yet and still here.  We may not be able to go home and get a break but whatever.

Preston on Saturday woke up and was very playful and then all of a sudden he threw up.  All the milk he drank when he woke up was now all over the couch.  I started crying, partly because I don't deal well with puke, but mostly because he finished antibiotics the day before and here he was throwing up now.  The doctor's believed that is was most likely because he was taken off zofran the day before when they stoped the antibiotics and fluids and maybe his stomache just was not ready to handle it.  They started zofran again and he has been fine since.  They even switched him to oral zofran since he was off the iv poll and didn't want to run risk of infection from accessing his line.  He looks like such a big boy when he takes it, is is a pill that dissolves on his tongue but he chews it. 

On Saturday too we had a small issue where I had asked a floating nurse to watch Preston while I ran downstairs to get some food real quickly.  James had to work all weekend and I was here by myself with the kids.  I was starving.  When I came back 8 minutes later the nurse had sent Preston to the playroom.  I was livid.  I had spoke with her in the morning after I started crying from him puking, telling her we have not let her out of the room in over 2 weeks waiting for his counts to bottom out and then to recover to try and minimize any chance of infections.  She knew we kept him in and while I ran downstairs, she decided when a volunteer came by to say it was open, it would be nice for him to get out.  I ran to playroom and luckily it did just open and he was the only one in there with the volunteer but he was in there with no mask on and no shoes.  I expressed my feelings about him being there to the volunteer which now I feel badly about but more so when I got back to room to the nurse again.  I know that it is my responsibility to watch my child but for a few minutes I needed to take care of myself.  I told her that she had no right to decide what was fun for my child or not, it was our decision to keep him locked in the room, and if anything she should have put a mask on him and wait for me to return to ask my permission.  The whole rest of the day, I was angry.  I was really angry because I was trying to protect my child in every way I possibly can and someone else exposed him to germs.  Preston was upset.  Mainly because I was yelling and started crying.  I feel terrible that we are still in this room but oh well, his health and safety comes first. 

Speaking of safety, he fell today.  He was walking in the room and I don't know how but he slipped and fell.  It scraped open his arm and his elbow bruised immediatly.  We cleaned his cut which he didn't even know he had, the doctor's came and now he has to have an antibiotic ointment put on it a few times a day to prevent getting infected.  Oh my gosh, it is always something.  The stress we have to even keep him in a bubble. 

I do have to say we do feel like we are doing something right.  The nurses often say when we are locked in our rooms it is because we are being good parents for Preston and keeping him away from people and their germs.  Well the doctor's talked with us a few days ago.  They said Preston has been the topic of conversation lately about how well he has been dealing with everything.  Chemo, sicknesses, moods, everything--so far for his entire treatment.  They think he is doing amazing and besides round 2, he has had minimal challenges.  They wanted to know what we are doing to try and share with other parents.  It really felt good to think that we were role models to them.  I went down the list from when we woke up to bedtime.  As soon as he wakes up, we change all his clothes and alcohol wipe all access points on his lines in case of diaper leaks, sweat, etc.  Clean his hands several times a day, mouthwash, etc.  We wipe down the room with cloroz wipes after the cleaning people come in and clean the room.  They touch the handles and a lot of things in the room with no gloves and it is a great time to just finish cleaning.  We also wipe down handles through out the day, doors, and counters before bed.  Preston's bedding his changed daily but at bedtime we change him shirt again and change the pillow cases and pads he lays on before he goes to sleep again just because we have been sitting in the bed too.  We also wash our hands like crazy and we don't allow him to leave room once his anc starts to go below 400.  We don't allow him to eat out of food containers if get food out and everyone has to eat portions on plate and not out of bag if we are sharing so we all don't have our hands in it.  I know it may be excessive but we do not care. 

We also talked to the doctors about when we go to pacu for his surgery's.  They have us sitting there with everyone else and their families waiting to be taken back when we get readmitted.  Normally who cares for normal patients but Preston and other cancer patients whose immune systems are compromised should not be sitting in rooms with people getting their tonsils out.  The risk of infections is dangerous and we asked them why that is their procedure.  They agreed that there should be a better system and yesterday they talked with pacu and they all decided that it was a great idea to either have an isolation room down there or they will be given a room here and then sent down when they are ready for us. 

Wow--do we feel good.  Our opinions matter and it is nice that they thought they were good ideas.  Too bad they were not in place before we started all this treatment but I am glad they will be for our 5th round next week and for all other kids in future. 

Anyways, that is it.  Just still waiting and hoping over next few days he will start to recover.  On Wednesday Pop Pop is going home until June 5th.  What a great help he is.  We really could not have done all of this without him.  He has given up his life back home to help us and we can't thank him enough.  Wednesday we also have some friends (Bill and Liz) coming to help for a few days so we are super excited. 

The last few days Preston has remained the same--doing well.  Antibiotics were stopped today.  It is a good and bad thing.  Bad because I am so nervous that he is going to get sick and I was using him being on antibiotics as a crutch from getting sick.  We still are at 0 anc, 9 days now.  It is so frustrating just waiting and even more so because we are all just locked in his room.  I feel so terrible for him who never gets to escape, at least we get to leave once and a while for a few hours.  I think it seems more frustraing too because on Mother's Day he has monocytes and we all thought his counts would have recovered by now and we would be getting ready to go home or at least I did.  The monocytes were gone on Monday and have not returned.  It has made us ancy.  He is really doing good though.  He has got 3 transfusions this week, one he didn't necessarily need yet (they wait until he is at 20 and he was at 24) but he was bruising pretty badly so they agreed to just give it to him.  He has been playing non-stop, jumping, and dancing.  A few days ago I had to put him in time out when he dove across the couch for fun.  As soon as he sat in his bed and drank some milk for a few minutes, he passed out.  Today, since he is off antibiotics, he got his tubes unhooked.  He was crazy man for a while.  It is hard to believe that he is a cancer patient who just finished getting blasted with multiple days of chemo.  He has more energy than me and that is sad.  I am really hoping his counts start recovering soon though or he may not be able to go home before we start round 5.  We all need just a few days break. 

Abby also got into a catholic preschool here.  I am so excited for her.  It will be 3 days a week from 8 to 3.  They teach religion, math, language, social studies, library/computer lab, music, art, and gym.  I think it will be fun for her and great for her to be able to go interact with other kids.  She starts in September. 

Today I went to the bank and I opened an account for Preston for the donations he has been getting. We  wanted to be able to keep that money seperate to help pay medical bills. The info is in the How you can help page.  It was sad sitting there and telling the banker our story.  He was telling me he already donated blood 2 times a month but he was going to request the kit to try and become a bone marrow donor and while I was there he shared the info with the rest of the staff.  It felt good in a way to feel like I have helped make a difference and helping get the word out there so maybe these people could help save a life.  I really want to put together a bone marrow drive soon and get people to request a kit and send it back to become a bone marrow donor.  If you have not already, please go to www.marrow.org and request a kit be sent to you.  I also have so many friends right now who are pregnant.  If you are not planning on banking your cord blood, please check into donating it. 

It really has been a pretty boring week.  Boring is good the Doctor's always say.  Let's hope it continues to be boring and his counts recover real soon. 

Thank you also to all of you who have ordered shirts and braclets for being part of Preston's League and supporting him.

If you are interested, we are placing an order on Sunday night, the 16th. 

Still waiting for Preston’s counts to start recovering. He is at 5 days no anc today. Yesterday his labs showed he had monocytes which are a good indicator that anc should start to follow. We were so excited but today he has no monocytes again so hopefully both will come back in next few days. It would be so wonderful to get through this round with no hiccups. The only thing so far is the one fever which they believe was from gemtuzamab but that is it. He has been so happy, I would hate to see him get an infection or sick this late in the round. He is such a strong boy. They did have to come and replace his bandages again that help hold the central line in place. Preston has been playing and dancing so much, it keeps pulling from all the weight of the tubes and we are panicked he is going to rip it out from his chest.

He has had a diaper rash the past few days so they decided to continue his antibiotics for another few days just to prevent any bacteria starting.

Yesterday was such a wonderful day. Abigail got up in the morning and made me cereal since she is not allowed to cook. She mixed 3 different cereals together. Fruit loops, cinnamon toast crunch, and cheerios. It was actually really good. Pop Pop helped her pour the milk but she was so excited. After I ate, I made Preston some cinnamon chip pancakes and we all came to the hospital. The kids got me an open heart necklace with all 3 of their names engraved into in. I love it!!! We did some painting projects, one which had Abby and Preston’s hand prints, and Stephanie’s foot print. My mother had sent cupcakes from a bakery around here that were delicious and over the weekend James’ mom had sent flowers and Abigail and James got me tulips—my favorite flowers. Last night, the nurses took around a cart to all the rooms and handed out flowers to the mom’s, with tea or lemonade, and cookies. They asked Abby to make signs for the cart. One said Sweet Tea, another said Lemonade, and then one said Happy Mother’s Day. She got to go around and give all the rooms the flowers and she loved how people were commenting on how cute she was and what a great job she did writing. She was so cute!!! Yesterday was a great day and I feel like this everyday, but I am so truly blessed to have such a wonderful husband and 3 magnificent kids. Life would be so different with out them. Even though we all spent the day in a room in a hospital with one of my children connected to tubes, it was the best mother’s day so far.

I took Stephanie to have her ear tag removed this morning but the surgeon wants to do it under local anesthesia next Friday and take the root of it as well. Otherwise he said it could come back.

Today is our 100th day here at Texas Children’s as an inpatient. (118 since been diagnosed). I can’t believe he has spent 100 days of his life in the hospital. I can’t believe that Stephanie has spent practically her whole life so far in the hospital and I still can’t believe we are here. Hopefully this round is almost over and round 5 will go by quickly.

Preston is still doing well.  Playing, laughing, and acting like a normal boy.  His anc is still 0 and will be for a while.  He is in such good spirits right now although going a little stir crazy.  We have not been letting him out of the room now that he is at 0.  Some days I think it is great to get out and talk with other families and some days I am glad to stay in with Preston all the time.  A little boy who was diagnosed with ALL when he was 6  months old passed away this week and the whole floor is filled with sadness.  He very rarely had any family come to visit and the nurses were his "second mommies".  He was so cute.  He had been sick for a while down in ICU and last week he got to come back up to the 9th floor.  He was good for a few days and then went back down to ICU due to liver failure and passed a few days later.  It puts life into perspective (or in my case, scares me to death) how fast things can change.   Preston may be bored, want to walk and get out, but we are trying to do everything that we possibly can to minimize any illnesses.  I know we can not control everything, obviously, but all the little things hopefully will help a little. 

The movie of the week is Spiderman and we were watching again yesterday and while I was sitting on his bed feeding the baby and he was on the couch, a scene in the movie where Peter's uncle gets killed came on and Preston said "peter is pissed".  I turned stunned and said Peter is mad and he looked at me and said in such a serious face, "no mom, peter is pissed, he not mad, he is so pissed".  I couldn't help but laugh.  Well we all know when you laugh at something like that, they don't stop saying it.  After a while, I explained to him how pissed was not a nice word and he should use mad instead.  Well when daddy came in (who tought him the word a few days earlier using those exact words to describe that scene) he yelled at him not to use the word pissed and to use mad instead and probably said the word pissed another 20 times.  He told Abby the same thing when she came in. 

Preston lost his last eyelash on his one eye and his finger tips and heels on his feet are peeling.  I have been clipping the skin to try and keep it clean and from him picking at it. 

Today James was able to go home for a while, get a hair cut, and is taking Abby to the museum.  Later we are giong to go out to dinner which makes me nervous.  The doctor's have decided to take him off antibiotics monday morning.  His liver enzymes have been elevated.  He will have 7 good days, nothing is growing in cultures, and staying on antibiotics for prolonged periods of times can cause issues.  I am nervous because it feels like every so called holiday or we go out to dinner, Preston gets sick.  I know it is a coincidence but I sort of feel like it is a jinx too.  We will see I guess. 

Please if you are interested in t-shirts, please let me know.  For those that have, I will e-mail you my address this week. 

And please keep praying for Preston.   

The last few days have been kind of crazy.  Monday we had been going back all day on what to do about Preston's allergy to vancomyacin.  A&I wanted to send him down to ICU to test dose at 10% the normal dose he is given to see if he has any problems breathing.  If not, we would be ok'd to continue using as long as he was still premedicated with benadryl, zantac, and steroids because of the rashed he was getting.  Then Infectious disease approved him for a whole round of using a drug called linezolid.  It is a drug that is under lock and key here and the nurses are all stunned he gets to use it.  To prevent him becoming linezolid resistant, Preston is now on it until he gets an anc back and first we need him to bottom out.  He is at 30 today so he is almost there.  So all day Monday we were not sure what was going to happen, go to ICU, stay here, or what.  At the end of the day when I was so frustrated because if we went to ICU we would have to be discharged from our room which would mean we would have to move everything, they decided to postpone the test dosing until the end of the round when his anc was back up and we were getting ready to hopefully go home and we would not have to move anything. 

Yesterday James used his flex day in case Preston did go to ICU because I can't go with baby and did some work, took Abby to park, and went out to eat with his Dad.  I slept in a little which was a nice break to the week. 

Stephanie also had her 2 month appointment during all of this.  She is doing awesome.  She weighs 10 pounds, 8 ounces now at 11 weeks old and is 22 inches. 

He is doing well.  I look at my son with one eye lash left on his right eye, 6 on the left, who just finished getting blasted with chemo and in amazement that he is still playing all day and can't stop smiling.  We are so lucky!

Preston finished his last day of chemo.  He got his last dose of mitoxantrone in the morning and the clinical drug, gemtuzamab in the afternoon.  I was a little disappointed although very upset when I was told what the side effects of mitoxantrone could do that it did not really happen.  The common side effects is that it could turn urine blue or green (didn't happen although his poop did turn green) and the sclera in his eyes could turn temporarily green or blue.  It only seemed to slightly effect a portion of each eye and they turned like an olive color.  The doctors were not convinced that his eye color was from chemo and did blood panel checking his billirubin.  It was just on the high range and they will continue to watch.  His liver enzymes were all high as well.  James talked to the doctors about this and they were ok with where they were at.  Dr. Margalan told James that although they are elevated for a kid getting as much chemo as he is being blasted with, his liver is still in good condition.  That is scary, I hate the side effects from all of this.  Abby was a little disappointed as well.  How do you prepare your daughter that her brother could have green or blue whites in his eyes.  I told her he could become a super hero for a few days and every day for the 4 days he got that drug, she kept checking, wanted to know what his power was going to be.  She is so cute!!!!

Last night Preston was starting to get chills and then spiked a fever.  It got to 102 and he was started on tylenol, did blood cultures, and given sephtax for an antibiotic instead of the vancomyacin.  The fever went away over night and we are really hoping it was just a reaction for chemo but just in case we are staying on antibiotics.  His cultures are coming back negative which is good but they will keep repeating for a few days just to watch.  Allergy and Immunology has been called today to come up and see what tests they are going to run to try and figure out how we can proceed with the vancomyacin.  He still as an anc, it is 610 right now so while he has an anc, they want to run some tests and come up with a good plan for next fever or in case this turns into an infection. 

Last night I went home and cried.  Everyday I have been preparing myself for the fever, for being sick.  I didn't think it would it happen until Wednesday or later and I know that I have no control over that and it is unrealistic but I have been convinicing myself of lot lately.  When he spiked that fever, all the doctor's in the room, talks of new plans, it all just hit me again.  I am so glad my husband is such a rock or at least appears to be.  I will keep you updated on A & I and Preston.  Please no more fevers though.