Preston's fight against Acute Myeloid Leukemia

March 30th

Posted Mar 30, 2010 5:29pm

Preston starts his last day of chemo for this round tonight and he is doing pretty good. His bandage over his central line is itching him and they tried a new tape yesterday hoping it was that but it is not. They think he may developing an allergy to the stuff they clean around the incision with and will need to try something different.

Abigail is doing better. She is home (came home yesterday) and is hanging out with Uncle Ken and Aunt Claire. She is on a lot of meds and we have been having to do breathing treatments every 4 hours. Baby slept great last night of course when I still had to get up anyway. Today, Abby with the help of her uncle and aunt are getting out every stuffed animal and putting them all over the house. If you know how many stuffed animals Abby has, they have been working on it for hours. Please no more. Abby can't dance this week and will be going back on Thursday to docs to discuss treatment plans.

Preston (and all of us) received great news today with his results. There is still no evidence of any cancer cells from his bone marrow aspiration or in his spine which is AWESOME news. We are thrilled and happy for Preston. He is such a champ thru all of this. After tonight and tomorrow mornings chemo, he only has 2 rounds left.

We swithch resident's and fellows again tomorrow. Sad because we loved this resident, she was wonderful. When Preston go readmitted,the Doctor said the teams were fighting for him which was funny because normally they fight not to get people. Who wouldn't want Preston though.

March 28th and crazy weekend

Posted Mar 28, 2010 11:58pm

Preston doing well and no fevers since this morning. Doctors really think the fevers were caused by the chemo and wouldn't be surprised if he has more. He will stay on one of the three antibiotics until he is done with chemo and for a few days after just to be safe though. Hopefully tomorrow we get great results back from the tests on Friday.

Today, Abigail was admitted into TCH and is in ICU right now. James has been with her all day and will stay with her all night since I can't go down there with baby. She has very bad allergies and has been sneezing like crazy with runny nose for a few weeks now. The last few days she started a cough and today she was having a hard time breathing and complaining she didn't feel well. James took her into ER and she is being treated for severe asthma attack. She is doing a lot better now but will need to start daily nebulizer treatments, asthma pill, switch allergy medication and we will be seeing her ped this week to talk about treatment plan for her.

Abigail will hopefully be able to go home tomorrow sometime but luckily if she needs to stay and can leave icu then they will admit her onto Preston's floor so we can at least all be together on the same floor. I love our nurses for approving that and trying to make our lives a little less crazy.

Posted Mar 27, 2010 10:21pm

Poor Preston, tonight we started 2nd day of chemo and he already

is running a fever. Hoping it is just because of chemo but to be

safe, he will be going back on antibiotics. Hopefully it is a chemo

fever and it will go away soon.

March 27th

Posted Mar 27, 2010 4:30pm

The 5 days home were great. Preston loved being home and he was full of smiles and laughter. It was so nice to have our family home together even if for a few short days. We were able to go out to dinner (we can't go into public places so we ate out on patio), we went to park and on the train ride, took a walk, and played on the roof. I was very sad to bring him back in on Friday. We hated the thought of bringing him back with knowing what could happen and after what we experienced last round who could blame us. Preston is a fighter though and we are half way done and this is what is best for him and soon he will be better and our family will be together again.

Yesterday, the 26th, Preston was readmitted after his bone marrow aspiration and spinal lumbar puncture. We went to the clinic in the morning and on the way out of the Doctor's, Preston started skipping and yelled "whoohoo, I going home now". When I reminded him that he was not, he cried off and on for almost 2 hours that he was hungry and wanted to go home. It broke my heart I couldn't help with either. He started round 3 of chemo last night. He will get 5 days of very aggressive chemo, only 2 drugs, but the one drug is twice as strong then when used in previous rounds. He has to use eye drops now because it can be abrasive to the eyes. He is doing well though and back in great spirits. I am so proud of him. Hopefully Monday we will get the results from the tests and they will be nothing but good news. We will keep you posted.

March 20th

Posted Mar 21, 2010 1:07am

Preston is doing better and better. Tomorrow we are going to repeat ct scan and also the scope up into sinuses and then we get to go home for a few days. We will have to be back in on Friday to get new bone marrow aspiration and spinal lumbar puncture. Then we will start round 3 Friday night.

Preston is excited about going home but honestly I think Abigail is more excited about having us home, both her parents at the same time, with her brother and sister. It is going to be so strange. We have been here 31 days this round. Total of 66 days so far in hospital.

Still have no idea why he got sick but they tell us it is normal for AML patients. Hopefully, never will happen again or as bad.

Anyways, we are very excited to be able to go home tomorrow and will keep praying for good news from this bone marrow and spinal test as well when we come back as well as speedy and uneventful round 2. The Doctor's tell us that boredom is our friend and I agree with them.

We will be having an early Easter this week so we can do easter egg hunt with all the kids. Looking forward to it and a week of feeling like what normal should be. Have a great week everyone!

March 17th and 18th

Posted Mar 18, 2010 2:25pm

Well Preston is finally doing better. He has not ran a fever since 1:30 yesterday afternoon and he is out of bed and smiling. He has started to eat a little (still on nutrition bags) and is wanting to play. Such an improvement from a few days ago. He finally has an ANC, and it is at 350 already. 2 days ago it was at 0. Last round it took 7 days to get to 350 once he got an anc back. 350 is the marker they use if they were going to let us go home. We have to have a few days with no fever and some more antibiotics. Preston has been complaining of some facial pain so yesterday the ENT came and scoped his nose. They do not see anything but congestion like they saw on ct scan but now twice daily, they are injecting 30 cc's of saline in each side of his nose to try and break it up. He HATES it. We have to burrito him and still hold him down. It is horrible but they will come back to scope him tomorrow and Monday and if still see nothing and he stops complaining about pain, they we may get to go home Monday or Tuesday for a few days before we start round 3. If he does have pain, then he will be going into surgery to have a biopsy taken of his tissue's in nose and sinuses and we will not be going home. I am trying not to get my hopes up because we have learned very quickly that things change fast here but very optimistic since he looks and seems so much better.

We are very happy with how he is doing and hope he continues. Thanks for everyone's prayers and support.

March 15 & 16th

Posted Mar 16, 2010 2:09pm

The past two days Preston has had some impovement. Tylenol has been working to bring down fevers faster and the fevers have been staying away longer in between. He actually went 16 hours between tylenol doses and fevers. So we are making progress.

Yesterday he went for his ct scan. He had to drink about 8 ounces of contrast and we were thinking there was no way he would do it. Our son, proved us wrong. We had the nurse put the contrast in syringes and she kept filling them with about 30 cc's of fluid at a time. He was supposed to drink 9 and did 8. He did wonderful during scan (although was secured down) and I could hear him yell "get me out of here" a few times but overall he was awesome. The CT scan showed that everything was clear except his sinuses however there was nothing signifigant in sinuses and they think it is congestion. So it is good news but we still have no idea what is causing his infection. He has been complaining about his eye and cheek hurting the past few days and they will repeat scan again once his counts go up on his sinuses. Last night he did have diarrhea again and threw up, but most likely it was all from the contrast he drank and the 3 french fries.

He also started TPN nutrition bags last night since he has lost some weight and has not ate really anything since last Monday. Hopefully it will give him some more energy to fight this off but we really don't want him on TPN very long and for him to become dependent on it. Today Preston's labs also showed monocytes which is great because that is normally a sign that his anc will start to rise soon. We were very excited.

So although he is running a fever now and not feeling great, he is doing a lot better than the past few days and it is hopeful that this is almost over and then we can start round 3 soon.

March 14th

Posted Mar 14, 2010 9:26pm

The last few days have had no real change. Preston is still spiking fevers over 103. Tylenol only gets the fevers down for an hour or two at most. Since Friday he has been off and on oxygen and rapid response team for ICU has had to come and evaluate if he would need to go down to 7th floor a few times. Luckily we have been able to stay in his room for now but ICU is on standby. He got another blood transfusion this morning and has been getting a few other additional fluids. He got a chest xray every day since Friday and luckily they have all been clear except for seeing an air pocket in one of his lungs but they think that is because he has not been able to get out of bed since Monday. Hopefully he will start feeling better soon so he can get some excercise because now pnemonia is a concern. He also got a xray of his belly yesterday and no blockages or obstructions were found. He was scheduled twice today to go for a full body ct scan but had to be canceled because of his labored breathing. Tomorrow we will try again. The tricky part will be to get him to drink the barium.

I really hope we figure out what is wrong soon or the antibiotics start working, it is so stressful on all of us and I don't know how much longer I can keep myself together. It is so sad to see your child this sick and nothing you can do to help but hug him.

March 11th

Posted Mar 11, 2010 11:20am

Preston is still is running a high fever. Not dropping below 103 yet. It is freezing in his room right now hoping that it may help him a little to try and break it. He has diarrhea so bad so today they are going to increase all his electrolytes since normal saline fluids are not enough since he is going so often and now they are doing more cultures on that.

He has not got out of bed in 3 days and is still very weak but at least today a lot more alert and more talkative.

He is getting a blood and platelet transfuion today also. We are hoping that it will give him some more energy. Anything that could help him fight this off is great. His fever is eating up his platelets trying to get energy. 2 days ago his platelets were 72 and today they are 16.

We still can only give him tylenol which is frustrating. Motrin destroys platelets and since his platelets are so precious, they can not give it to him and the other option is only a last resort.

Today Stephanie turned 1 month old. So glad she is here but boy does this past month seem like such a blur. Can't believe she is 1 month old and we have not even really had a chance to enjoy her. Can't wait until we can enjoy everyone!!!

Thanks again for everyone's support and phone calls. We appreciate it and is nice to hear friendly voices oncein a while.

March 10th

Posted Mar 10, 2010 10:50am

On Monday night, Preston went to sleep at 11pm. Besides waking up for maybe 45 minutes, he slept yesterday until about 5:00 pm. He only woke up for the 45 minutes because they put a tube up his nose to get a culture and he was pretty upset about it. He did finally wake up last night and stayed up for about 5 hours before he went back to sleep and is still sleeping this morning. His fever all day yesterday never dropped below 103 even with tylenol. By time he was able to get the next dose, his fever was sometimes over 105 but mainly hovered around 104. After his 4 am dose of tylenol this morning it seems like something is helping because now we are down to 101 and 102 fevers whether it is antibiotics or the tylenol.

They took a lot more blood today to be cultured. The culture they sent out the other day because of his BM issues came back negative which is good, and the culture they took from his nose yesterday came back negative which is good and bad. Good because it came back negative but bad because this test was for viruses and they were hoping it was a virus causing all these issues. So now we wait and still hope maybe just a bad cold or late reaction to chemo but really hoping not an infection but luckily he is on meds already to treat it if it is.

Either way, we are just hoping that his fever continues to fall and he starts feeling better.