Preston's fight against Acute Myeloid Leukemia

Well we are back. We got into a room last night around 6ish after a very long day of waiting for a room after Preston's bone marrow aspiration and spinal lumbar puncture. We started chemo again last night and this morning we have completed the first day. 6 more days this round to go and this round we are doing the clinical drug.

We had a great 9 days at home and thank you everyone for your prayers on no fevers, it worked. Preston loved being home every second. We had a few meals out, I cooked almost every night and I can't tell you how wonderful it was to eat home cooked meals. I was able to get things a little organized, Abby went swimming almost every day, and we just played a lot. We even caught up on a few tv shows. I sat down to watch Grey’s Anatomy since I have not watched one show since January. I was watching the first show we had recorded and kept wondering why I had not deleted the show because I had seen it before until about half way through. I stopped it and looked at the info, it was recorded on January 14th at 8pm. It was the show I was watching while James put the kids to bed when we got the dreaded call to go into the ER. I watched all the shows I have missed and deleted all but that first show. I am still not sure why I can’t delete it, it was the worst day of my life, you would think I would want to.

Anyways, it was so nice to see him wake up with a smile on his face everyday and not want to go to bed at night because he just was so happy to be home. Thursday the 22nd, we took him in for labs and his platelets were up to 108 which was great. They are really regenerating themselves very fast, we just need to continue to pray they are healthy platelets. His anc was also 1600 yesterday on the 26th.

Abigail was also so happy to have us all home. What people forget is that she not only has limited time with her parents, she has very limited time with her brother and new sister. She is lonely even with the people visiting and being home, she clung to us. Sunday while we were eating breakfast she said “mom, I wish we never found out Preston had cancer, then I would be able to play with my brother all the time”. I just wish he never had cancer.

9 days at home was great, it was awesome. At the same time, it was to long. It gave us this false sense of feeling like everything was back to normal, to develop a routine, and get used to being home. I am glad we are almost done and I know we only have 2 more rounds left but it is also 2 more rounds of being terrified of what is going to happen with our son, is he and how bad is he going to get sick, and hopefully they can figure it out. Only thing we can continue to do is pray and hope that he remains as strong as he has and that the next 2 rounds go very quick and we can be done with all this soon.

We are all staying very positive and know that if anyone can do this, Preston can. He is a remarkable young boy. Preston is doing great right and happy! We also moving back to the suite tonight. So we will back in room 905.

April 18th

Posted Apr 19, 2010 1:13am

We are home and have been since Saturday the 17th. Preston's anc was 730 when we left, the only thing delaying his break was that we needed to finish the anitbiotics. He is still on the steroids but should be done in the next week, just needs to be weaned off. Hopefully after that, we can stay at least a week with no fever and allergy and immunolgy will try and decensatize him.

I can't tell you how happy Preston was to come home. On Saturday he waited on his bed, still hooked up to iv's waiting for his meds to finish and as soon as the heplocked him, he slid down the bed, put his shoes on, and went to the door to wait for us to get out of there. He has been talking a lot, eating a lot, and just really can't stop smiling. He is such a different person at home. We have enjoyed a few dinners out and on Tuesday, hoping to go to first baseball game here.

Abby also loves us all being home together, sleeping under same roof. She is so cute and is playing so well with her brother and helping with Stephanie every time she cries. I hope the next 2 rounds go as quickly as round 3 went.

We are scheduled to go back on the 26th for spinal lumbar and bone marrow aspiration. After that we will be readmitted and start round 4 of chemo that night. Please pray we get no fevers, if we do, we will be going back earlier. We were supposed to go back on the 23rd but our primary doc said we deserved the extra weekend home together so I hope we get to use it.

We love Preston being home and all of us being together. Nothing better than that right now.

April 14th

Posted Apr 14, 2010 8:59pm

Yesterday was an ok day. All the steroids have made Preston be pretty miserable. He cries about everything and just is so unhappy. Preston's first day of no anc was April 6th and one week later, the 13th, he had an anc of 50. He also got a platelet transfusion.

Today Preston went into surgery and had his central line replaced. He was scheduled to go in around 9 and finally around 1ish we were taken down because we were bumped do to a liver transplant. James sat with Preston for almost 1 1/2 hours in the OR and surgery lasted about an hour once he was taken in. He did well and they removed the old line and inserted a new one in the center of his chest now. He was pretty uncomfortable when we got to go back from the tube being put down his throat but he was sweet. All day he was very upset because he was so hungry and thirsty. When he got moved back to his room and was able to eat, he sure did eat a lot.

The plan is now that he has to be on antibiotics for another 48 hours and if has no fever, he can can go home sometime this weekend and we would come back on Friday to start round 4. That is the plan and it would be wonderful to have a week at home. Praying that fevers stay away.

Central line

Posted Apr 12, 2010 5:46pm

The doctor's have decided that Preston will need to have his

central line replaced this Wed. or Thursday. Because of the type of

infection and that we still have 2 rounds left, they all feel like

it would be better to replace the line and minimize chances for

infection.

April 12th

Posted Apr 12, 2010 1:07pm

Preston is doing well. He still is on vancomycin and being pre-medicated to take it. It makes him sleep a lot and is moody from the steroids they are giving him, but overall he is feeling better. Developing this allergy really stinks. He has to be pre-medicated to take the medicine and then the medicines they are giving him are causing elevated blood pressure and medication induced diabetes. Long term it would be more of a problem but short term, they will only give medicine as needed. We have 4 more days of antibiotics/pre-medication. If his blood pressure gets elevated, they will just give him a small dose of blood pressure medicine to bring it down and for the diabetes issue—today they removed the sugar from his fluids he has been getting and if that does not work, he may need insulin until we stop the antibiotics in 4 more days. It is frustrating to see him have to go through this. He sleeps a lot and is grumpy but who wouldn’t be when you are going through all of this and is medicated so much.

Allergy and Immunology came today and they agree that we need to stay with current treatment plan. They are going to talk about if desensitizing him would be beneficial since we know he will need to this drug again. Bonus of their visit is that Abby has an appointment with them to go on Sept 22nd for her allergies/asthma and they are going to get her in on their schedule when they are back in clinic next month so we moved up her appt. a good 4 months.

Great news is that Preston has monocytes and today they are at 10, hopefully in next few days ANC will start to follow and we may be able to go home next week before we start Round 4. We still have a lot of time left here but it is nice to think we have just rounds 4 and 5 left.

April 9th

Posted Apr 9, 2010 1:20pm

Always something here with everyone.

Preston has not had a fever since last night which is great. They ended up giving him the triloset to break the constant high fevers and it helped. Now they need to just watch his labs to look for any signs of kidney issues, although they reassured me it should not happen with just the one dose. He was supposed to get a blood transfusion yesterday but with other complications it was postponed until later today. Preston not only developed sensitivity to getting platelets, he has developed an allergy to one of the antibiotics he is on. The antibiotic they think he may be allergic to (vancomyacin) is the one that he really needs to take to fight off this infection until they find out if penicillin family meds could work. He has been breaking out in hives and holding his throat when he gets the hives and they are very worried. They don't want to stop the medicine until they know if there is something else they can give so he is being pre-medicated with benadryl, zantac, and hydro-cortisone to help prevent a severe reaction. It could also be 2 other antibiotics, which would be better, but we have stopped those for now just to make sure it is the vancomyacin. Since they need to pre-med him now for blood and platelets, and with this other allergy issue, they postponed giving the blood because he needed the antibiotic more. If it is the vancomyacin then once Preston gets better they will need to have allergy and immunology come down and desensitize him since he will need it for the next 2 rounds because he will most likely get another fever.

Today so far since he has been up, he has been playing and eating a little. Hoping that he is recovering from the line infection and we will only need to deal with this allergy issue for a while.

I also burned my hand last night trying to get a cup of hot chocolate. There was a whole in the bottom of the cup and I was holding Stephanie. I was trying to put in the sink and the weight from water made the bottom break open more and somehow trying to make sure it wouldn’t splash on her, it turned and spilled all over my hand. I was miserable and so appreciative of James for driving back to bring me Motrin and help with the baby for a few hours when it was his first night home in a week.

April 7th and 75th day here

Posted Apr 7, 2010 1:08pm

Today is the 75th day we have been in the hospital here and probably have another 75 to go. It has gone by in the sense that Stephanie will be 8 weeks old tomorrow and she was not here when we started this but it seems like it is going by slow in every other sense.

Preston is doing a little better today. His fever is staying down for a while with tylenol and they found that he has an infection in one of the lines (the blue one) in his central line. He started antibiotics yesterday and that should take care of it but if he still shows lingering signs of infection in a few days, he will need to go back into surgery to have this central line removed and a new one inserted somewhere else in his chest. It is a relief to now that it is an infection this time and that the antibiotics should help. At least we know what it is and it is not a mystery illness like last round.

Preston is getting another platelet transfusion today (he got blood and platelets on Easter morning). His platelets went from 46 yesterday to 9. He has tiny red spots all over his body that are a sign of needing platelets the doctor's said. Basically they are bruises in the vessels that could burst and cause internal bleeding if not given a transfusion. They said it is not dangerous here because they do lab tests every day and ordered the platelets but if he was home and this happened, he would need to come in and get checked and given them as soon as possible.

Otherwise, Preston is doing a little better and should be good in a few days hopefully.

April 6th

Posted Apr 6, 2010 12:02pm

Well Spring "No" Fevers has ended and Preston spiked a fever again during the night (104) and is now back on the iv getting triple antibiotics. The poor kid. It has been 11 days since we came back and the nurses and Doctor's said they almost expect it to happen during days 10 to 14. He really is not feeling well and has been sleeping on and off all morning. The tylenol seems to be working this time unlike last round and brings the fever down to 100 pretty quickly.

Easter was wonderful. I woke up in the morning with Abby and Stephanie at home. I had hid all the kids Easter baskets around the house and Abby found them all and put them in the middle of the room for us to bring to hospital so we could open everything here. I stayed up until 2:30 the night before and made them a bunny cake. They had a great day with their new presents and all of us just being together. The Easter bunny stopped by which Preston and Abigail loved although Abby figured out quickly that it was just someone in a costume and not the real Easter bunny. Luckily she didn't share it with the bunny or with Preston to spare their feelings.

We have had Abby here with us more the past few days which has bene great. The kids really love having each other around and you can see how happy Preston is when she is here to play.

Praying that Preston will kick this fever really soon--wish I could say fight it off but his anc is 0 right now. He is really strong though and will hopefully be back to himself before we know it.

April 3rd

Posted Apr 3, 2010 5:01pm

Preston is doing good. He has been off of the iv's since Wednesday and very happy. He is eating and drinking pretty well and is full of smiles. His anc should be at 0 tomorrow and may need a transfusion as well. His counts feel like they are taking forever to bottom out this time. I just want them to get to 0 so we can hurry up and get the up again. We are praying that there are no sicknesses again this round or for any other round. He is doing good though. Half way done. Can't believe that we have spent over 75 days now in the hospital. It is getting nice out and it really stinks not to be outside but hopefully we will be out there soon enough.

Abby is doing well too. She is already missing her Aunt Claire and Uncle Ken. They had a lot of fun this past week and we will all miss them a lot. We thank them for re-arranging some of the things they wanted to do because of her health and treatments and for really helping us with everything we needed help with. Can't wait for the next visit.

James has had a little bit of a cold all week so today for an hour is the first time I went home since Monday. It has been a long week but I try and remind myself that poor Preston doesn't even get to escape for an hour and I shouldn't complain. Stephanie has been an awesome baby here.

We are going to celebrate Easter here tomorrow. Feels weird but at least we are all together! Hope you all have a great Easter.