Preston's fight against Acute Myeloid Leukemia

March 8th

Posted Mar 8, 2010 11:46pm

Preston is doing ok today. His anc is still 0 and he is a little more tired and looks sick although we did do laps around the hall today, but mostly walked. Last night we had to have his BM be sent out to be cultured. Hopefully it is not an infection and we hope to have it back in 2 days, we are hoping (although could be painful)that it is just mucusitus. Normally you get sores in mouth which he has last round, but the doctor's said he could get them in his intestines which could cause the issue he had yesterday. Other than that, he is good. Still has a runny nose and cough but in great spirits.

Today was James' and I wedding anniversary. We went out to dinner tonight with Abby and Stephanie. I sat at dinner wishing so much that we could all be together as a family and we will soon but days like today makes it really hard. James mentioned that maybe we could drive back to Tampa next year to celebrate when Preston is better. This is the first year in 7 years, we have not gone back to where we got married. I was thinking at dinner about how I am the mom who never wanted to be away from her children. Until this happening, I have maybe been away from Abby a handful of times at night and from Preston one time. I would get anxiety when I was away for more than a few hours. If I went to do something by myself, I always felt lonely without them and now I am forced to be away from one every night. I hate it and it is unfair. Abigail and Katie made a cake for us to celebrate. It was very pretty, purple frosting to remember the purple bridesmaid dresses. Cherry Chip cake mix, it was yummy. At least we al got to eat that together (minus Katie bc she is sick), that put a nice ending to the day before we all had to split up.

Anyways, we are all doing pretty good. Hopefully in next few days Preston's counts will start to go up and we can get a break soon and be home again as a fmily, even if only for few days.

Feb 27th

Posted Feb 28, 2010 12:41am

Tonight Preston started his 4th day of chemo and he is still doing well. Still eating although all his foods not be the best choices but who cares--it is calories.

Today was a good day for all of us. All of us were together for most of the day and whether we are here in the hospital or at home, it is just great to be together. Abby and Preston played so well and were so cute. We were stressed that he was having so much fun jumping, wrestling, and playing that he may pull his tubes out. It was adorable to see them hug goodbye and here them tell eachother they loved one another. I love that he is wanting to play, wrestle, and jump while getting chemo. I admire his strength, not many people I know could do or would want to do that.

Today I took Preston for a walk around the floor and we did a bunch of laps. I pushed Stephanie in her stroller ( I have been holding her while walking with him before) with one hand and pushed the iv cart while holding his tubes so they didn't touch the floor in the other while he walked. After the first lap we got the hang of it and we even stopped in the kitchen every lap so he could get another chocolate chip cookie.

Hopefully the remaining 4 days go just as well and then we can wait again for his counts to go up before rounds 3, 4, and 5!

Feb 26th

Posted Feb 27, 2010 12:21am

Preston is doing well with chemo. Tonight he started day 3. Things have happened quicker than they did with round 1 like his chapped lips, his lips are pealing already and not wanting to drink. He is doing great though. He still loves his view and he likes having his sister there in the room with him more and more. Today he started calling her Stephanie-Monster after his Dad's nickname Stephi-monster. It is really cute hearing him say it but I hate the nickname.

We did get news today regarding his bone marrow test and the typing.

Disappointing news is that Stephanie is not a perfect match so we will not be using her cord blood and we will go ahead with the 5 rounds of chemo. 1 down, 4 to go.

The great news was that preliminary findings after looking at the bone marrow was that no cancer cells were seen so they consider him in remission. They sent the bone marrow to lab though for testing because he is doing the clinical drug trial so we have to wait for final results. So yes, he has to do the other 4 rounds of chemo even though he is considered in remission. The 4 rounds are considered consolidation rounds and the hope is to get all lingering cells so it does not come back. The plan right now, is that we will not be looking for a match from bone marrow public bank. We will need to do that in the future if he does not continue to respond well or if he relapses, which we are praying both never happen.

Please if you were going to become a bone marrow donor, please still do it even though we are hoping we will never need it. You never know and there are tons of other families out there like ours that hope one will be there if needed.

Thanks

Posted Feb 25, 2010 10:37am

I just wanted to say thanks to everyone sending gifts, balloons, and cards to the kids. It is so nice to feel all of your support right now. I still can't believe we have 4 more rounds to go. We feel like it has been a life time and it was 5 weeks that he was here for the first round. It was a little sad at how easy it was to come back yesterday and get him checked back in, it should not feel that normal but we are doing what needs to be done and hoping our family can be back together at home as soon as possible. We are really hoping that last month was our month for bad news, except for Stephanie being born of course, and that this month and every month will be filled with good news.

I also want to thank the Kaczorek's for having dinner delivered the other day, it was wonderful and for the Mom's club here taking turns and doing dinners for us. It is so nice and SO HELPFUL.

Of course, our parents have been a great help as well and wouldn't be able to do this without all their help. 3 kids is tough enough, but 3 kids right now is impossible without everyone helping us out.

Thank you Aunt Chris too for taking on a new job so that Nana could come here for a few weeks, you are a life saver as well!!!

Feb 24th

Posted Feb 25, 2010 10:31am

We are back in the hospital. After a long day of being at the clinic, getting his bone marrow aspiration and spinal lumbar puncture, ekg, and getting admitted back in, we are all settled in his new room (room # 909). Preston is doing well. This kid just really rolls with the punches. As much as he loved being home, he has asked to go home a couple of times but mainly because he was hungry and wanted to go home and eat (couldn't eat all day yesterday until we got into our room around 4ish). This time we have a great view from the window for him. He gets to see construction of a new wing of hospital with all the cranes and trucks. He sees the road with the cars, trucks, busses, and best of all, the trains. And he sees people. There is a lot of action going on outside and he is happy to watch.

Last night he started his first day of the second round of chemo. Doctor told us yesterday that hopefully he responds the same way but he handled chemo in the top 20% of all kids getting treatments. He is so strong. Funny to hear adults complain about little colds now when he is going through so much. This chemo round is 8 days and without the clinical drug this time.

Hoping to hear in next few days about his results from bone marrow test and Stephanie's cord blood possibly being used.

Feb 20th-22nd

Posted Feb 23, 2010 12:42am

The few days that we have had home with the whole family have been great so far except Daddy still has had to go to work. Preston is so happy at home, Abby loves having him here to play with, and Stephanie, well she pretty much just eats, sleeps, and needs to be changed.

Preston is really warming up to Stephanie, she makes noises and he checks on her. At least twice an hour he is coming up to us telling us he is hungry which is awesome because we have been trying to get him to eat for so long and want to fatten him up before he goes back in and does not want to eat again. They have had a great time playing. Tonight the kids were pretending they were bulls and bull fighters and one would hold a cloth and the other would run under it. It was so funny listening to them yell olay.

I love having everyone home and can't wait until the next break. Before bed tonight, Abby said "mom, I better have a lot of fun with Preston tomorrow because it won't be so much fun when he is not here". I have to admit, I have had tears drop down my face for the past few days dreading taking him back. I started packing again for him to go back and it really is going to suck. James is taking Wednesday off so he can be there to get him through the surgery and help get him re-adjusted to being back in the hospital.

The zoo and park were great, he played and ran, smiled, and laughed a lot. It has been so awesome to see him like this.

Stephanie is doing well after her appointment this morning. She now weighs 5 pounds, 9 ounces.

It will be sad to take him back but I am hoping in exchange we will get some great news following his tests.

Feb 18th & 19th

Posted Feb 19, 2010 3:15pm

So yesterday was a good day for the Winslow family. Both kids got discharged and are home. Preston goes back in Wednesday for his bone marrow aspiration, spinal lumbar puncture, and to be readmitted and start day 1 of chemo for the 2nd cycle. I can't tell you how much he loves to be home. He is so happy and just can't stop smiling. He slept so well in his cars bed last night, slept from 9:30 to 9 this morning with no interruptions. He runs everywhere he goes and is just so happy. Over the past month he has lost muscle tone but boy has his vocab expanded. He can speak 5 or 6 word sentences and can say 2 or 3 sentences at a time, and is so expressive.

Stephanie was also discharged late yesterday afternoon but will be watched very closely. Her jaundice was severe when she was readmitted but came down enough for them to let her go home. We went back in this morning and had it retested and luckily it went down a little more but we need to go back Monday morning again to have restested again. We will have to have it retested weekly probably for about 2 months and if any time it goes up (using whatever formula) they use, she may need to be readmitted again for phototherapy. The problem is that she has developed something called ABO incompatibilty and also received an antigen from me during pregnancy. It takes around 6 to 8 weeks for the mother's blood to fully to flush itself out of the baby's body so hopefully everything will and she will get rid of the antigen. Other than that, she is doing perfect.

A nurse came today and showed me how to flush Preston's 2 iv lines from his central port. I will have to do that everyday.

It is so nice to have my family home all together. I am so hopeful that he gets to stay home the whole time until Wednesday and that the next few months will go by fast and he will remain home for good. It is so wonderful to have everyone home and happy.

Feb 17th

Posted Feb 17, 2010 8:32pm

Taking it day by day or hour by hour has been so true for us, especially this week.

Stephanie has been admitted back into nicu because of her severe billirubin levels so we now have 3 kids again in 3 different locations. At least this time Preston and Stephanie are in the same hospital, just seperated by a few floors. Hopefully she will only be in here a day or 2.

Preston is doing better today, the fever seems to be over, at least we hope. He still has a cough but not nearly as bad as it was. They have post poned his bone marrow test and spinal lumbar puncture to Monday because of the cough. The up side is that if he continues with no fever and if the cough goes away, he may be able to go home from Friday to Monday morning. Then he would come back and do the 2 tests and be readmitted to start round 2 of chemo that day. Tomorrow he has to have an echo cardiogram done.

Other than that, things are ok. Everyone is doing well and we are thankful for James' parents who have been great helping with everything.

We are sad to see them go home for a few weeks on Saturday. Their help has been so appreciated, we don't know how we could have done this the past month without them.

I know I still trying to count all my blessings and hoping that all the challenging things happening this week will only lead to good news and things next week.

test

Posted Feb 16, 2010 11:35am

Preston's test has been postponed since he is sick for a few

days. So keep praying for us all week.

His anc is over 300 so if he were healthy he would be able to

come home. No break this time for him but he is in good spirits,

that and his health are what matters most right now.

Feb 15th

Posted Feb 15, 2010 11:55pm

We made it home with the baby yesterday and ended up not being able to visit Preston because he started running a fever. He was put back on triple antibiotics while they are doing cultures. Today the one came back negative which is good and they really think he just has a cold but to be safe, he will stay on antibiotics.

He was still running a high fever again today and they are repeating cultures. He also got another platelet transfusion and will get another one probably tomorrow if platelets are under 60 before he can go into surgery for the bone marrow aspiration.

Tuesday is a big test day and we are praying that we are going to get the test results we are hoping for. We should find out in a few days.

We all did go visit Preston today. As soon as we walked in the room he said "mommy and baby" "baby out of belly". He was so cute. Everytime she cried he said "baby out, feed baby". He was a little nervous to touch her but loved her being around. He did hold her a few times but we tried to keep her distanced as well since he is not feeling well. It was so nice to have my family together for the first time as a family of 5.

Stephanie is also going tomorrow for her bone marrow typing. Poor girl but she is a champ just like her brother (and sister) and will do anything she can to help.

Anyways, please pray for Preston. We need all the prayers we can get.