Day 25 June 29, 2009

Today we stayed in the observation unit all day with hopes of moving back to a room. By lunchtime, we heard we were staying here again. Dr. Kernan came around 3 and told me some bad news. She said Cody has 2 inflamed areas in his brain. This is a result of the HHV 6 virus. This may be causing him the confusion and sedative state. Unfortunately, we cannot do a spinal to confirm it due to his low platelet count. So we have to treat him with an antiviral med. Unfortunately again, this drug causes toxicity to his kidneys. We are staying in the unit for more observation. He is hooked up to the EEG tonight so we can rule out any seizures he might be having and treat them if we need to. On a good note, his counts are holding up and his white blood count came up to .4. It is not unusual for it to drop again but it is good. His platelets and hemoglobin is up too. We'll take it for sure. He seems ok but I can tell his is scared. I am too, but he is fighting hard. Continue to pray for us.

Day 24 June 28, 2009

Sunday- we are still in the observation unit. There was not a room for us so we stayed here another night. Cody had an EEG to measure brain waves. He was not himself all day. He was in this sedated state. I think I could have done anything to him. I talked a lot to him and told him how good he is being and all the things we need to do once he gets better. His white blood count is .2. We are switching around some of the nausea medicine. It seems to be mucus that is causing the problem. He got another dose of IV immunoglobin. This will help his body fight off that virus. Wish us luck.

Day 23 June 27, 2009

Well, what a night and day we had. Cody is very confused as to what happened when. It is scary to witness. We looked at pictures I have on the internet to jog his memory and that seemed to help. He is afraid and not himself.

We had the MRI and it was perfect. So that concern is behind us. He does have high blood pressure and we are working on lowering it but so far, not having luck.

The doctors are pretty sure now that he is sensitive to all the medications and this was a reaction. So we are hoping that by stopping some of the meds that he will be back to the Cody that we know. We are VERY tired after last night and today so hopefully we will get some rest. We are staying tonight in the Pediatric Observation Unit to be closely monitored again.

day 22 June 26, 2009

Friday: The day started out ok but ended in a nightmare. Cody has been itching his arm and it has gotten out of control so we have been trying to treat it all day and to make him comfortable. We ended up with a bigger dose of benadryl and a numbing topical called lidocaine. I had noticed throughout the day that Cody seemed to be asking me odd questions or would ask me the same questions. He would not realize this either.

He slept most of the day but did get up and sit in the chair. Around 9 pm he started asking me some questions that he should know the answers to-like how many days have we been here? What do I have? We started talking and he told me he was terrified and that he thought he was here because of an accident. It got scarier and scarier. Then when I told him he had a transplant, he cried and wanted me to get in bed with him, if I was allowed-so sweet. Now we were both crying. Finally the team came in which included neurologists and he tested perfectly. Because of his low platelets, a CAT scan was ordered to rule out any bleeding in his brain. THANK GOD, that was clear. They have a unit here called Pediatric Observation Unit which is 3 beds with 2 nurses and a nurse practitioner and they put us in here for the night. It was about 3 am when we got here. Once we got settled, it was time to get up. We are scheduled for an MRI in the morning.

Day 21 June 25, 2009

Today is 3 weeks since we got the new cells. Cody has been a little uncomfortable with the rash. The good news is the biopsy went well. Our doctor did her own viewing and saw some new cells!!! This is definitely a good sign. Of course, we have to look at the analysis on Monday or Tuesday but we do have new cells growing. I will take it! Cody is sore from the biopsy and she also did a biopsy of his rash so he has a sore spot there too. I am doing my best to keep his spirits up and I have to tell you, it is hard work!

As I lie here each night, I forget how comfortable we have become here. It feels like a temporary home here. It is easier for me in a lot of ways because of the constant medical care and there is less that I have to worry about here. He is taken care of that way and I can focus on his emotional needs and to make sure he is comfortable. I know when we left Schneider's after 20 days there, I was scared to be home. Now I can only guess how scared I will be leaving here. We have been here 26 days. It is a second home but temporary for sure. We know we are in a good place and getting the best care so that is all that matters right now. Keep up the awesome job, Cody!

Day 20 June 24, 2009

Cody had a good night of sleep. He did get platelets early this morning and then a blood transfusion. His potassium is high so we did an EKG this morning just to make sure his heart is ok. It can sometimes be affected from this. Thank goodness it was ok.

The fevers have stopped but the rash has us concerned. It could be the graft vs host disease which means some issues going on with his cells. There is meds to treat this and we will know after the biopsy results come back Monday or Tuesday. It is sort of premature for this and he tested positive for a virus too. Everything can be treated so we are not alarmed about anything as of yet. We have to wait a few more days.

Cody felt kinda down today. He is still emotional and little things seem like a big deal to him. He stayed up a good part of the day and is going to bed now.

I cannot wait to have this behind us.

Graft vs. Host Disease (GVHD) - a frequent complication of allogeneic bone marrow transplant in which the engrafted donor cells attacks the patient's organs and tissue. GVHD tends to be more severe in patients receiving mismatched transplants from family member or unrelated donors.

GVHD is two diseases: acute GVHD and chronic GVHD. "Patients may develop one, both or neither. Acute and chronic GVHD differ in their symptoms, clinical signs and time of onset." ~

Acute GVHD usually occurs during the first three months following an allogeneic BMT. "T-cells present in the donor's bone marrow at the time of transplant identify the BMT patient as "non-self' and attack the patient's skin, liver, stomach, and/or intestines. The earliest sign of acute GVHD is often a skin rash that usually first appears on the patient's hands and feet." medicalistes.org

Chronic GVHD usually develops after the third month post-transplant. "Scientists believe that new T-cells produced after the donor's bone marrow has engrafted in the patient may cause chronic GVHD. Most patients with chronic GVHD experience skin problems that may include a dry itching rash, a change in skin color, and tautness or tightening of the skin. Partial hair loss or premature graying may also occur."

Day 19 June 23, 2009

We had an uneventful night other than the fever. Cody made it almost through a whole movie before he fell asleep. He ate a bag of his favorite salt and vinegar chips. Hey, it is something.

He still has his rash and looks like it might do a biopsy of it on Thursday when they look at the bone marrow. I am worried about the bone marrow results but looks like we are on the right track. Say a little extra prayer for us for Thursday. I am hoping for a better day and not so much sleep. We have adjusted a few meds so maybe he will stay up a little. But then again, Cody always slept till 12 whenever he could so not so unusual.

Cody stayed up all day which was a first for him. He even made a video on youtube solving his new puzzle. He did not have a fever and had a pretty good afternoon. He did go to sleep pretty early though and had a good night.

Day 18 June 22, 2009

Well, we had an uneventful night.  We usually get to sleep around 12 and are up all through the night. I woke up at 3:00 and he was still sleeping and without a fever.  Casey called from CA and we talked for a few.  He is there for a few weeks then here July 11.  Can't wait for that.

Cody did spike a fever around 6 am but they are giving him celebrex for it. ( I Know, I never heard of that either.) Seems to be working.  Our doctor was in this morning and she will be doing a biopsy on Thursday to see if there are cells in his bone marrow.  This will be a nervous waiting period, to say the least.  I am already nervous.  If he still has this rash, she will do a biopsy of that too.  She thinks it could be from the fevers, from a reaction to a medicine or graft vs host disease which we hope is not.  All are treatable but we would like to stay away from steroids if we can.  The graft vs host disease is a rejection from his body.  Please say some extra prayers for a positive biopsy report and for a negative GVH disease report.  It is literally one day at  a time.

On a good note, the blood sugars are back to normal.  Now it is trying to find something he wants to eat. The room is full of snacks because he tries one of everything.  Today the choice is wheat thins.  I am about to go for my daily walk to get those.  

Thank you all for reading.  oxoxoxoxo

Day 17 June 21, 2009

Happy Father's Day to all my favorite dads in the world.  You know who you are!

Last night was stressful and frustrating.  The fever is up again and still present today.  Cody also has a rash on his body.  There are a lot of things that could be going on.  They are checking his blood for any other bacteria or now viruses.  We are trying a new med to lower the fever.  He got platelets today and will be getting a blood transfusion here shortly.  He will be getting another chest xray today because although the oxygen level is good, he is breathing faster.

It is a waiting time for us.  His white blood count went back to .1 but that is ok and expected, so they tell me.

I will keep you posted on the rest of the day.

Cody is being a real trooper through all of this.  He is sleeping most of the time but he is being so cooperative each time he is woken up for blood pressure, temperature, oxygen readings, glucose sticks, weight, and to take pills orally.  Many of you know that I used to say he was the world's worst patient.  He was so uncooperative and in so much pain for his tonsillectomy a few years back.  He would fight me at the dentist for an impression.  He was just not a good patient.  And he has that normal stubborn Taurus streak in him anyway. Well, he is not only the bravest 16 year old I know but he is the world's best patient now. Keep up the good work, son.

Day 16 June 20, 2009

Today was a quiet Saturday after a rough night.  Cody's vision started blurring and his blood pressure was rising. So we were bothered all night with neurologists.  Thank goodness as the day wore on, the blurriness subsided and the blood pressure came down. Cody's white blood count is .2 now. It is a slow process.  Cody slept most of the day and I thought we were doing well....until he spiked another fever at around 4:00.  It takes 3 days for something to grow to see what it might be. I am hoping it is nothing and just a reaction from the steroids finishing.  If it is not one thing, it is another.  Cody's emotions seem better today but he feels crappy again.  

Keep us in your prayers and hopefully we will be moving ahead.

Day 15 June 19, 2009

Not only did Cody get a good night of sleep but he also slept in a little.  He was quiet most of the day and enjoyed his sugar free icepops.  He even ate a little dinner tonight.  Still trying to get control of his emotions.  Again, he got his last dose of steroids this morning so that should be out of his system by this weekend.  This is a long process but we will get through it...

Day 14 June 18, 2009

Today marks 2 weeks since the cells went in. We have had a tough 10 days and I have been really scared.  Cody has done an amazing job!

The steroids are nasty.  Not only did they make Cody feel so emotional but they made his blood pressure go up and his blood sugar go up.  He now had to get some insulin and is on a sugar free diet.  This will go away once the steroids are out of his system. He is a little puffy so he got some lasix to help with that. He did not have a good day emotionally.  Everything was upsetting.  We got it under control by the evening.  We had a great night of sleeping and looks like things should start looking up.

Day 13 June 17, 2009

Well, the solumedrol steriod started last night along with another med to control the hallucinations.  I am so happy there was no reaction last night.  We can't rule it out but we are hopeful.   He is a little groggy today but he is working doing a little physical therapy now.  He still has a slight fever but we are hoping they end soon.  He is eating ices and drinking so that makes me feel like he is feeling a bit better.  He is still on oxygen but not the monitor except for checking vital signs.  I am hoping the afternoon continues to get better.

Cody was up most of the afternoon and got to the shower.  He was weak and he cried in pain a lot but he did it.

He seemed quieter tonight but it was a pretty good night of sleep.

Day12 June 16, 2009

Today started out after a good night of some rest. I know I rested because I had a pain in my arm.  He did not have a fever but then had them all day.  

Today's plan was a chest xray and an echocardiogram for his heart.  They wanted to make sure there was not any bacteria in his heart.  Just found out the preliminary reports looks good.  

The other issue is the high fevers.  They think he might have pre engraftment syndrome.  They won't really know until the counts come in.  So the plan is to treat him with 3 days of steroids.  The steroids are what caused his hallucinations.  So looks like it might be another crazy few nights.  The good news is that maybe there is starting to be some growth.  I did go and look online and I typically do not do that and it was not so promising with the outcome of the syndrome.  I emailed the doctor and she told me to get off the computer.  

Cody is ok. He is a bit cranky and complains about Sloan sometimes but I just ignore him.  I am happy with all the care and treatment we are getting.  They seem to have something for everything.   The nurses are exceptional.  

I will update tomorrow.  Wish us luck with the steriod issue.  

Day 11 June 15, 2009

Today started out ok but soon enough, he got a fever.  This is his pattern but I do hope it breaks soon.  He was ok all morning and we were scheduled for a CAT scan at 3:00.  The drs just wanted to get a clearer picture of his lungs and sinuses.  Thank goodness all turned out ok and nothing more was seen.  There is fluid and one area they are watching but looks good.   A new antifungal would start.  Well, 15 minutes into the new antifungal, Cody had a reaction.  He just told me he wanted to sleep and then the next thing I know, he is coughing and can't breathe.  He then went into anaphylaxis shock.  Of course, I did not know this.  All I heard was that he could not breathe.  I push the call button and the nurses came running along with a few drs.  Our nurse today, Julie, gave him a steriod and some benadryl and started the oxygen then the nebulizer.  Cody was petrified to say the least.  He calmed down and has been sleeping ever since. I was pretty scared too.  I hope we get some sleep tonight.  I know I will monitoring his breathing for sure.  But just maybe, we can get a little sleep. 

Day 10 June 14, 2009

We did not get much sleep last night.  His breathing was way off.  He had another xray at 1:00 am and it was the same.  Still had fever all night. He had to wake up every hour to use this breathing apparatus.  He started a new antibiotic that runs over 24 hours.  They are still monitoring his output because they can hear fluid in his lungs and his feet and face get puffy. We changed the one med, switched to another and then added the original one and that seemed to work so far.  He is tired today and still has a fever but the dr this morning said his numbers are good. 

Last week feels like a blur to me.  I keep hearing from the nurses how bad he really was and then I get upset.  You are almost too scared when you are going through this alone and you have to be sane to keep up the things that are happening right before your eyes and happening to your son.  He is really amazing.  Today he wanted me to rub his hands and pull his fingers.  Guess they were cramping.  I said "you good?"  He answers "I am hanging in."  It breaks my heart.  But he is doing a great job.  He said in the chair today, he breathes in the tube and coughs but he does it.  He takes his medicine and is cooperative for the most part.  

It was week from hell and I am glad it is behind us.

Day 9 June 13, 2009

We had another interrupted night due to low blood pressure.  His kidneys are sluggish because of one of the antibiotics so he was given a different med to help him release some of the fluid.  The good news is that there are no new bacteria growing from his blood.  The bad news is he still has fever.  It can happen but we would like to see him responding better to the antibiotics.  The weekend dr said he is on 5-6 antibiotics now and we still have a few options to try.  

Today he was up for a while and actually flew his new helicopter that I got for him. He even sat in a chair.  He took a good nap but fever is back up.  His head is all patchy.  The radiation makes it come out so much faster and in handfulls.  The nurse said to just run over his head with tape since the follicles are dead, he won't feel it.  It got out some of the hair. It is so messy too.  Let's see how he does the rest of the afternoon.

Day 8 June 12, 2009

Another rough night preparing for the surgery. He needed 2 more units of platelets and one unit of blood.  Surgery went well and the old port from Schneider's was removed too.  

Not so good that we found out he had a strep bacteria from the line.  It is serious but they are treating it with the most aggressive antibiotics.  Say an extra prayer for that. Scary.  We are waiting for a CAT scan to look more closely at the pneumonia.  Hopefully there will not be any surprises there.  Cody felt better today.  He got up, ate an ice, drank some ginger ale and talked and watched a little TV.  That makes me feel better.  Such a sweet boy!

The day was much better.  We did not need the CAT scan after the xray looked better today.  

I got a little more information about the strep virilens bacteria he has. ( I explained it in my email update.) Hopefully it is out of his body, all of it.  He feels better so our dr is convinced it was the old port.  It is out too.  He is still on the oxygen but used his phone and computer for a minute so he must feel a little better.  He is tired but talks to me and seems to be more like himself.

His hair is coming out in clumps.  Faster than before.  That radiation is potent.  I have been wiping it and it just wipes off like you were cleaning it off the floor.  He is ok with it.  He likes the buzz look. 

 I hope this is the end of his bouts with these two infections but there could be more.  It is so scary. 

day 7 June 11, 2009

Well, the night was kinda quiet.  He was put on oxygen so those levels were constantly being monitored.  I feel like we got some sleep but not enough.  We had another xray first thing and he still has some fluid there. He was giving a med to help him urinate and another xray was taken.  I am waiting to hear that.

Cody is being a little feisty and cranky today so maybe he feels a little better.  He said to me after one time when I helped him pee and am not to familiar with that aspect of a penis so we made a little mess- Mom, please tell me if I am asking too much.  Well, I talked through my tears to assure him that there is no place in this world that I would rather be right now.  It is amazing that he seems this.  Or maybe he just sees how horrible I am starting to look. But what a great spirit he has.  

I am in the room and all of a sudden, his heart monitor starts beeping and I am watching his heart rate go up.  I freaked and called and then stepped out to get someone. It was something like 230.  The team of doctors flew in and it was racing but not as high as the machine indicated. Within in minutes, an EKG cart was here and we checked his heart, which was fine, thank goodness!  I must have looked even worse than I already do because they kept asking if I was ok.  I said I think it was my heart doing that.  A VERY scary 10 minutes.  Check back later to see what the afternoon brings.  Thanks for reading.

The afternoon was better.  Cody was up and talked for a few minutes here and there.  

I am a little nervous about the surgery tomorrow.  It is at 7:15 am and he is having platelets issues again so they are loading him up.  He will get type specific ones on Saturday. 

Hopefully I can get some rest tonight. I am going to snooze early.

Day 6, June 10, 2009

The awful day yesterday continued through the night.  Cody has vomiting, diarrhea and fever all night.  Let's just say that we had to go beyond the 'privates' issue and I felt like I had a 2 year old again.  I felt so awful for him.  This morning we decided to continue with the pain pump so he gets the meds around the clock and that the vomiting may have actually been a withdrawl from the pain med.  So that seems to be in control as of 7:30 this morning.  I am keeping my fingers crossed.  

We found out this morning that there is an infection in one of his lines of his CVC-which is his central port.  That is what is causing the fever.  It is good that we found this.  He had to have 3 temporary IVs put in his arms and the CVC will be taken out today and a new one in tomorrow or Friday.  It is a minor surgical procedure.  It is good that it is not something else.  

We are both exhausted today and once things settle, I will get a nap in.  He is napping now.  Nurse Liz tells me that he will feel better once the line is out but it could take up to 48 hours for the fever.  He will be sleeping most of the time for the next few days.  His body is stressed.

Sleeping is a good thing right now.

The day did not end too well.  Cody had a chest xray which unfortunately there was a spot there.  It is a little pneumonia or the beginning of pneumonia.  I was very upset to hear this.  He is being treated with antibiotics and being monitored as to the levels that are inside his blood.  Once they determine the exact kind of bacteria they can target it with more specific antibiotics. He had a 2nd xray around 11:30 pm and it still showed the same.  

Day 5 June 9, 2009

Today I got up and did my normal chores and routine.  I sneak out of the room for a shower and then I pop some laundry in.  I eat breakfast and wait for the doctor's to make their rounds.  Our nurse today is Rae Ann.  She is great.  She told me that Cody will be getting platelets and a unit of blood today.  His body is reacting in the way that it is supposed to.

I checked into the inhaler issue. I was  never told of any wheezing and now it has disappeared on the computer.  Not sure who prescribed that but it is no longer needed.  That is one reason that I need to be here. I check EVERYTHING.

Well, the rest of today was a blur. I stepped out  after the blood transfusion was under way only to return to Cody vomiting.  He broke down and kept asking "why me?"  It is so difficult to answer.  He continued vomiting most of the afternoon and then he got a fever.  Several blood tests and cultures were ordered as well as antibiotics. We are trying to see where the fever is coming from.  The vomiting may have been caused from a withdrawl from morphine since he got a few doses of that.  So he was given a little more and the vomiting did stop.  

He is now on a pump for pain, but as needed. He will be getting the platelets soon and his fever is almost back to normal.  He is back to sleeping and I will let him rest.  Long, exhausting day for both of us.  

Day 4 June 8, 2009

Today was a good day.  Cody woke up kinda groggy and I have to admit, I was a little worried.  He did not seem himself.  But after a 2 hour nap, he was fine.

His IV nutrition started and that goes for 24 hrs.  It is made especially for him and includes whatever his body needs, magnesium. potassium, fats, proteins, and even insulin should his blood sugar increase because of it.  It can be altered to meet his body's needs.

Our transplant doctor, Dr. Kernan came by this evening.  She is really sweet.  She said Cody looked like a 'man of steel'.  He looked and was acting great!  She did see that his throat was red so we know the mouth sores and pain are coming.  Earlier in the day, Cody emailed her about some intimate questions.  Remember he is 16 and now the whole world has to know his business.  He had some questions about when he gets out of here.  Let's just say he is being a typical 16 year old. 

He is on an inhaler.  They noticed some wheezing in his lungs which is from a med he is on.  

He did not sleep too well and had some foot pain again.  There were crazy thunderstorms here last night which kept me awake.  

Day 3 June 7, 2009

Today Cody was considered neutropenic. . Neutrophils are a type of white blood cell that fights against infection. The ANC (Absolute neutrophil count) is calculated from measurements of the total number of white blood cells (WBC), usually based on the combined percentage of mature neutrophils (sometimes called "segs," or segmented cells) and bands, which are immature neutrophils. Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection. After chemotherapy, radiation, or a blood or marrow transplant, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature.

Cody received platelets today.

We had our first visitors today and Cody enjoyed that for sure!  Thanks Lauren and Sue!!  XOXO

Today the food of choice was ham and crackers.  I was able to find the one Cody could have.  His diet has changed due to the risk of infection from anything prepared outside of the hospital.  I had to get packaged ham as opposed to deli fresh cut from a slicer.  We are trying to make sure he does not get an infection from anything.

The foot pain was back during the night and caused interrupted sleep.  

Day 2 June 6, 2009

Today was a quiet day which was nice.  Cody had some trouble sleeping because of foot pain.  We have tried some morphine and that does the trick for sure.  

I was on the hunt today for "Take 5" candy bars and chocolate pretzels.   I did find them and Cody enjoyed both!  So he is eating a little.  OK, so not the healthiest but it is something.  

Day 1 Friday June 5, 2009

Cody had  a pretty good day other than being tired.    He continues to build his own remote control car.  He is nearly finished.  

An OT person came today and he actually worked out.  He is trying to stay active and not lie around in bed all day.  He used a little foot bike in the room too.  Not much of an appetite but this is ok and expected for now.

Before bed, he was a bit mushy to me.  He was thanking for me for everything and got a little emotional.  I know how I am feeling so I know he has to feel something.  He is handling this so well so far.  I know for me that when I look at the big picture,  it is more than I can handle.

Day 0 Transplant Day June 4, 2009

As you know, Cody got a double cord stem cell transplant today at around 2:20.  His body handled both units well but the mental and emotional part were hard to digest.  

He was pre medicated and re-medicated so he fell asleep for the remainder of the afternoon.  I was thankful when he woke up around 9 and felt pretty good.  Soon he was fast asleep for the night.