I was asked to move my blog to caringbridge.org because it is more accessible.  I'm not crazy about the format because there are image limits, but that's where it is now. http://www.caringbridge.org/visit/coleandjamisonporter

Clinic day 1

Now that I can actually sit down and think, today was actually kind of sad.  Cole had his first clinic day.  You might think, oh what's the big deal.  Well, for 6 months Cole would go to the clinic and play the entire time we were there.  He would have a blast.  Today, however, Jamison got to play and Cole had to get him BP, Temp and blood drawn.  It wasn't a horrible time for him, however as with anything lately he fought that blood draw harder than anything.  He is so strong.  We had both of the lab techs in there, one holding his legs between hers and holding his arm down.  They first attempted a finger stick, but he was fighting that so much that they had to use his arm.  So there I am, holding him in my lap, holding his one arm down, he is screaming at the top of his lungs, crying so hard and we're all just manhandling him to get a tiny amount of blood.  Heartbreaking! His labs were good, though, so we go back in a week.  I spoke with the doctor about his bactrim, and he said with the amount of chemo he's getting, it could be argued that he doesn't even need it, so as long as we're attempting, he's fine with that.  He also sent us to the store to get something to try and help Cole with his BM's.  It's been almost 2 weeks, miralax has not helped at all, we can't do enemas, so we're going to try this...assuming he will drink it.  I also spoke with the social worker and got a ton of new forms to fill out.  Oh joy.

I think Jamison had a fun time.  The nurses all kept going to him instead of Cole, thinking we were there for him.  No one could believe we were back with another child.  But we were..and we'll keep going back, at least for 6 months.  Then I can hope we never step foot back in those doors again, right?

Philly, we'll be back soon.

I still cannot believe we're headed back to Philly on a monthly basis. I purchased our tickets tonight for next month.  Let's hope we can get NCCS to help us soon, I should know more about what we need to do with reapplying for another child when we go to the hospital on Thursday for Cole's first CBC.  I'll meet with our phenomenal social worker again and see what we need to do. Although I do know we're her first case in which more than one child in a family has cancer, so this will all be new to her as well.

We'll fly out on Oct. 10 because tickets were considerably cheaper to fly out on a Monday vs. a Tuesday...to the tune of $900 cheaper. So we'll just get a hotel room, hopefully just for the one night.  Right now we're thinking we'll take the boys to the Please Touch Museum again.  They really seemed to enjoy themselves there and really did not want to leave.  It was quiet since school was in session and it was a weekday.  RMH can likely get us in for free, so that's a bonus.  Free fun in Philly, you can't find that too often.

Cole is still doing well.  He's still a bit hyped up, but he is also really constipated and won't take his medicine.  He's is difficult.  With a one year old we would just give him his medicine and rarely did he spit it out.  With a three year old we have to hold him down and still get the medicine spit back at us.  Another question for Thursday, is there an another way we can give Cole his bactrim, tylenol with codeine and zofran because liquid is not working. Who knows what tomorrow will bring.

Cancer sucks!

As most of you have read, Cole was officially diagnosed with Unilateral Retinoblastoma on Monday, Sept. 12, 2011.  10 months and one day after Jamison's diagnosis of Bilateral Retinoblastoma on November 11, 2010.   They found one small tumor in Cole's left eye.  To say we are shocked is an understatement.

A little background.  When we did genetic testing we did find out Cole was  a carrier.  However he had two clear dilated eye exams, locally at that time.  He also had a clear MRI on his brain.  All of their doctors were reassuring that he would likely not have any problems with RB even though he carried the mutation.  He was 3, Jamison had it first, he showed no signs, his appointments had been clear.  Monday we were at Dr. Sheilds' office for the new patient day.  Jeff was playing with Jamison while I was with Cole when they did the brutal appointment.  The entire time he was fighting and screaming, "Mommy, please make them stop, she's poking my eye, please, please, please." She did his right eye first, all clear, no signs of RB, so I start thinking how awful I am for putting him through this for nothing.  Then she starts with the left eye.  After a few minutes I hear, "there's a lesion." He has one small tumor in his left eye.  That day she assures us she can get it with cryotherapy, freezing, and not have to do chemo.

On Wednesday we brought both boys in for their EUA's.  As she's looking at Cole's chart and for whatever reason the genetics clicked in her head and she tells us she wants to consult with Dr. Leahey about possibly doing chemo.

Needless to say, Wednesday was day 1 all over again.  The big differences, we were totally blindsided.  We knew somewhat what we were going into with Jamison.  We fully expected chemo, we knew he had cancer.  We didn't know 100% what to expect, but we knew it wasn't going to be good.  With Cole we had been reassured he would be fine, then we were told no chemo, and well, we were finally hit with, he has cancer and we're doing chemo.

The chemo is to ensure that he won't lose his eye, at least not due to this tumor.   But it also to greatly reduce his risk of pinealblastoma or trilateral retinoblastoma, where the cancer shows up in the pineal gland in the brain.  There would have been a 9.3% chance of this happening, so 1:10 kids would get this if not treated with chemo.  That was too much of a risk.  If that were to happen it would most likely be fatal.  It's also hopeful that it can help fight off any new tumors that may want to show up in his eyes.

Cole did his first round of chemo on Wednesday, 9/14 and Thursday, 9/15.  There are also some differences with his chemo.  He will be getting the less aggressive course of treatment.  The more aggressive is done in children with a D or E tumor, the less with those who have A, B or C.  Cole's is a B.  He will still get vinchristine, carboplatin and etoposide, but he only gets etoposide both days, where as Jamison got Carbo and Etoposide both days.  We are also going to try this without a port.  He fights the IV placement but calms down almost immediately depending on where they place the IV.  The second day they placed it in his had so he had no ability to use that hand due to his "no no".  That is something that put over it in hopes that the children won't pull their IV's out.  He was not a fan of that, but eventually got used to it.  He also will not be getting the neulasta shot because of the lesser chemo being used.  His numbers should not drop as much.  He is looking at 5 more rounds of chemo, once a month in Philly.  So, yes, we're back to traveling monthly to Philly.  We're pretty much back where we were 10 months ago.

Jeff and I are still in complete  shock.

Jamison did receive a stable report, meaning no new growths, he is still in remission.  His birthday is Saturday and we have decided to continue with having his birthday party.

I have to touch base with our social worker, make his first clinic appointment for labs, call and set up hearing tests for both boys, Jamison, just a recheck because the chemo can affect his hearing.  Cole to make sure his hearing is good, with Jeff's family history, we want to make sure that all of their other senses are working great since their eyes are compromised.

Cole will be fine, but the next 6 months are going to be difficult.  He will know what is going on.  A 3 year old's cries are so much different than a 1 year old's cries.  I am trying to help him understand that his eye is sick and we are giving him medicine to make that feel better.  However this medicine might make his tummy sick and will likely make his hair fall out.  Within the next couple weeks we're going to buzz his head, in hopes that the hair loss won't be a complete shock to him.   I know Cole and Jamison like to share everything, but I would have appreciated them not sharing this.

Thank you again for all of your support, prayers, good thoughts.

Amazing Retinoblastoma Kids

In June we had the privilege of meeting up with some other children who are battling Retinoblastoma at the Greenville Zoo.  All five of the children have Bilateral Retinoblastoma.  Three are treated in Philly, one in NY and one at St. Judes.  All are equally amazing and great little fighters.  

It's September 1st.

September has a whole new meaning to me now.  Perhaps Jamison was due to be born in September because of his cancer, more likely it was just chance.  September is National Childhood Cancer Awareness month.  It's not glamorized like other awareness months, you don't hear about it on tv, radio, I have yet to even see mention on a magazine.  However, it's an important month to me.  I'll be honest I hadn't heard about it until November 11, 2010.  We need to raise awareness about childhood cancers because they are so underfunded.  Wear gold for all of the wonderful babies out there who are battling cancer.  Each day they wake up with a smile on their face and ready to face the world, only to be shot down with chemo, radiation, surgery, or many other necessities to keep their faces smiling. 

Some of the photos through Jamison's battle.

 He went through this so we could keep this.  We love our boys so much.  They are such a joy even when they're being stubborn, frustrating and pushing limits. We still pray that Cole won't have to endure any of this.

Postponed

Thank you Hurricane Irene, you have postponed our Philly trip by two weeks.  That means I get to get physically ill with anxiety again.  Oh joy.  We were supposed to fly out on Sunday, Cole was up first with a 6:45 am appointment on Monday morning.  Today we got the confirmation that our flights were cancelled.  I expected it and I'm glad they did it today vs. us having to wait until Sunday morning, I just hate that it's hitting that area.  More so I hate that the boys appointments are going to be delayed two weeks.  I was on the phone for about two hours trying to change appointments, flights, car rental, request at the Ronald McDonald House.  I got everything accomplished except for rescheduling Jamison's MRI.  He has to be sedated and he can't eat or drink anything, the only appointment on that Tuesday that CHOP had was at 1:00 pm.  That doesn't work for a child like him.  I think he would literally tear my shirt off trying to nurse if I made him wait that long. :) I'm not working with their pediatrician's office trying to get an MRI scheduled locally, hopefully before we fly up.  We now fly on Sept. 11, bad day to fly.  It's also the first football Sunday, so that stinks!

The boys are doing well, fighting all of the time.  We're trying to get ready for Jamison's party which will be a little more of headache than planned due to us getting home right before it.  But we'll deal with it and have a great time.  We hope to see everyone there! :)

I cannot stop bragging about Cole

It's Friday and I am still amazed at how wonderfully Cole handled everything that he had to endure for his MRI on Tuesday.  The first thing was not eating.  His appointment wasn't until 10:15, we had to be at the hospital at 8:45 and he couldn't eat anything past 4:15, which meant he didn't eat anything after about 8 Monday night.  He couldn't drink past 8:15, so that was when he started trying to sneak snacks.  Fortunately I was able to get everything away from him before it entered his mouth.  His first meltdown occurred when we arrived at the hospital.  He thought he was going to get to go play at the Hem/Onc clinic.  They have a great playroom in there and he has enjoyed it very much every time we had to take Jamison to clinic.  Once he realized he wasn't going to get to play he was sad and started crying.  He didn't get happy again until the Child Life worker came in with some toys.  She brought him animals and he had a blast with them. Then she brought in her babydoll to show him how they were going to give him an IV, or a magic straw as they call it to children.  He enjoyed squirting the water through the straw and didn't want to give her the baby back.  So then she brought in another baby for him to play with and a movie to watch.  He was happy playing and watching tv that he didn't even ask for anything to eat or drink.

Next obstacle was his iv.  I was terrified of this as it has always taken at least two adults, preferably three, to hold Jamison down while he screams bloody murder and the third or fourth person accessed his port or placed his iv.  Cole only cried for a few seconds when they actually had the needle in his hand, other than that he was still playing.  I had my hands loosely on his legs but didn't need to hold him down at all.  He did not like the board they place on him nor the fact that he had a bandage on his hand.  He asked me to take it off about 100 times, but I told him if we took it off he would have to get a new one placed and that wouldn't be any fun.

Next they came in to wheel him away and sedate him.  He cried as the medicine went in and the doctor said that it does burn going in, but he counted to three and Cole was out.  I only have Jamison to compare this too and let me say I was shocked.  Jamison's MRI was a bit of a nightmare.  He had a cold, but we get his done in Philly so they gave him the special medicine that dries him up and proceeded very slowly with him.  It took about 10 minutes for Jamison to actually go under and stop fighting.  After about an hour and a half they finally brought him back to me and he slept for a bit longer. Then he was awake as fast as he fell asleep. All of the sudden his eyes popped open and he wanted to play.  He was really upset with the pulseox and didn't care about the iv.  Of course the pulseox was what had to stay on, but he had some cookies, drank some juice and was ready to get out of there.

Best news though is that his MRI is clear!  This is definitely what we hoped for and expected, but with cancer you learn to expect the unexpected.  I hate that we'll have to do this every 5 months until he's 5, but it needs to be done.

While Cole and I were at the hospital, Jamison hung out with his Great Uncle Johnny for a bit.  He was sad when I left, but then I learned that he was given pixie sticks, so I'm sure he cheered up in an instant. :)

Appointments are set

Cole's and Jamison's appointments are set for the most part.  We're still waiting to hear from Palmetto Health, our local hospital, about Cole's MRI.  I probably spent about 90 minutes on the phone this morning trying to arrange everything and of course change everything.  Jamison's birthday is Sept. 17, so we can't go after that or he won't have a free flight.  I really didn't  want to go on the 13th, and while it was an option, I just didn't want to do it that close to his birthday.  August 29, Cole will have his new patient appointment at 6:45am (yay!!).  The early appointment is a good thing.  Jamison's first appointment was at 10:00am and he wasn't seen until 3:00pm. Then Aug 30, Jamison will have his MRI and his appointment with the oncologists Nurse Practitioner because the oncologist won't be there that week.  Boo for that, but it is what works best for us.  Then Aug 31 Jamison will have his EUA, we won't know for certain if Cole will have one or not until that Monday. My assumption is he likely will have at least one, but it's all up to Dr. Shields.  I hate to put them through this and wish I didn't, but I know I'm doing what is best for them and trying to protect them.

This will make for an interesting trip as we have never taken Cole to Philly, we're not sure how he will be on the plane, nor how he will do playing the waiting games we play up there.  Hopefully we'll be able to get into the Ronald McDonald House and at least he will be able to play.  If not we'll just have to find some fun stuff to do.  Any suggestions for a 3 year old on an airplane?  Jamison usually sleeps, but who knows what Cole will want to do.

We're going to be waiting another 2 weeks for Jamison's glasses, apparently they were made wrong and now we're basically told, too bad, you just have to wait longer.

News about Cole we didn't want to hear.

Bilateral Retinoblastoma is largely genetic.  We were under the impression that Jamison's was sporadic but did genetic testing on Jeff and myself to find out if there was a family history.  In doing this we found out that Jeff has the mutation that Jamison has and he is a silent carrier of RB.  Once we learned this we needed to get Cole tested because Jeff had a 50% chance of passing it on.  We learned the results today and unfortunately Cole also has the mutation.

What does this mean for Cole...well, for now nothing.  Hopefully it will never develop into anything.  Likely he will be seeing Dr. Shields in Sept.  He has had two ophthalmologist appointments with Dr. Cheeseman, the doctor who diagnosed Jamison, and he has been cleared in both of those.  Eye cells don't finish developing until about the age of 5, so there is a chance he could be diagnosed with retinoblastoma until then.  In the long term he will run the same risks that Jamison runs for getting another form of cancer. So, it pretty much sucks.  It also means he and Jamison have a 50% chance of passing it on to their future children if they decide to have them.

Please pray for Cole that he never develops retinoblastoma and please pray for Jamison that his cancer won't return.

Today Jeff and I are just bummed, speechless, don't know what to say.  There's nothing really to say. We don't know if Jeff's mutation is sporadic, we can't find that out unfortunately since his mom passed away.  We do know that his dad tested negative and doesn't have the mutation.  So if it was inherited, then it would have been from his mother's side.

I guess we will really need to buy stock in sunscreen as we have already gone through 6 cans of it this summer and it's barely July.  It's one of the ways we know to do our best to protect them from sun cancer, we also ask that anyone who does smoke, please don't do so around our family.  They don't need to be near it.  I have turned into the crazy lady who yells at people for smoking in the non-smoking areas.

Some post surgery pictures

Hello, port, it's so nice to see you outside of Jamison's body!

Celebrating the 4th by wearing mommy's and daddy's shoes.

 The high was only 96, I guess they were a little chilly. 

Watermelon time!

 

 

See how yucky Jamison's bandage is? Too much blood.

Port has been removed!

Jamison's surgery went well on Friday.  It somehow managed to go on-time as well.  He and I got to the hospital at 6:30 am, Cole and Jeff stayed home, I would like to say and slept in, but Cole was awake before we left.  Jamison was taken back to the operating room at 8:30, surgery started at 8:35 and I was speaking with the doctor before 9.  The doctor took me back to recovery, so he was only away from me for about 35-40 minutes.  He had a bad iv, so I'm hoping he wasn't actually in any pain since they gave him iv pain mends, but when we were in recovery he was leaking a mixture of blood and fluid they were pushing in him.  My shirt ended up soaked before I could get the post-op person to take the iv out of him.

There have been a few extremely minor hiccups in the recovery, only that he is too active and won't rest.  He and his brother are pushing and shoving, they are at the lovely age where they play nicely for about 5 minutes and then one starts crawling on top of the other resulting in hitting and crying.  Jamison has bled a little more than normal, almost filling up his bandage.  His tegaderm is falling off, it's not supposed to come off until the 8th.  I called the on-call doctor and he said we could change it or come to the hospital to have it changed.  We're just hoping it will stay on through the night so I can call the pediatrician and see if he can change it tomorrow.  I'm nervous about keeping it sterile and there's no way we can do that here.  Jamison requires two to three people to hold him down while someone does what they need to do, only when messing with his eyes or his port site.

We had a lazy 4th of July weekend, just hung out and played at home.  We couldn't really take Jamison to any of the festivals around because we know they have huge bouncy houses and he would want to go play.  So we just stuck to the house, watch a massive firework show that someone a few streets over was doing and chatted with our next door neighbors.

Hopefully all will be quiet on our end until Sept.  I'll try to remember to post, we will see.

Surgery is scheduled

Friday, July 1st, Jamison will get his port removed!!!!  It's a great thing for him to have, but I think we're ready for it to be gone.  Mainly due to the risk of infections and my lack of trust of the doctors at the CBD clinic.  He would need it flushed every month if he kept it, and it can take the nurses 3 tries to access him which means more risk of infection, no thanks.  He also has to be taken to the hospital and admitted for fevers while having the port, which we have had to do only once, so I'm thankful that he doesn't get fevers often.  His surgery is scheduled for 8:30, so we'll be at Palmetto Health bright and early at 6:30.  Well, Jamison and I will be there, Jeff and Cole will still be at home.  It should be a fairly simple procedure, so please pray that all goes well and we will be home Friday afternoon/evening! Thanks!

See ya later, port!!  We have appreciated you allowing Jamison to receive his chemo in the best manner possible, but we are ready for you to go away.  We hope to never see you again!

It has been a while

And you may wonder what we have been doing...well, we've been enjoying the summer.  Since April, Jamison needed one more platelet transfusion, his platelets dropped to 5K, but he rebounded like a champ.  We've just been staying home and playing outside in the mornings...it's too hot out to play in the afternoon.  Cole turned THREE!  I can't believe he's already three.  He's 40 inches and 40 lbs.  

Jamison just has his first post-chemo check up.  He is still clear.  We are so fortunate.  I realize this can change in an instant, but for right now he is still cancer free.  He didn't have any seeds or tumors show up and there was no need to treat him with laser or cryo therapy.  His next appointment is in September, so until then we will enjoy the rest of the summer.  It is a critical appointment because the chemo will be completely out of his system and if something is going to grow it will likely start by then.  His eye doctor feels like his right eye should be fine since he never had fluid or seeds.  She will still be watching it very carefully, but it's his left eye she is more worried about due to having both seeds and fluid.  He also has his second MRI scheduled for Sept. 

We're actually planning to go up a couple days early and take the boys to Sesame Place and enjoy ourselves a little since Jeff had to use his vacation days for Jamison's appointments.  We would have to fly up Monday anyway, so I said let's fly up Sunday on the early morning flight and go to Sesame Place for a couple days, then head to *hopefully* the Ronald McDonald House and then to his appointments on Tuesday and Wednesday.  We're bringing Cole with us this time.  

Please keep praying because it is helping. :)

The tumors are dead!!!!!!

Yesterday we heard the best news we could possibly hear. Jamison's tumors have regressed meaning they are now dead! There is a slim chance they could become active again and a greater chance that new seeds could form but that is why he will continued to be followed by Dr. Shields will follow follow him closely until he's at least 5. Jamison doesn't have to go back until June 8th. We also learned that his MRI is clear. Overall we had a great day yesterday. Today is his last day of chemo! Tomorrow he gets hist neulasta shot and the hopefully he will only come back for check-ups. :)

long overdue

I know that those following us have been waiting on an update and I am sorry.  I guess I'll begin with Philly.  His tumors are still responding to his chemo, laser and cryo treatments.  I think the chemo is really starting to bring him down though.  Last month he was pretty unbearable for a few days after we got home, this last week has been a nightmare.  There really isn't much more news on that front, his doctor isn't really forthcoming with what to expect because every child is so different in how they respond so there really isn't anything to expect.

Cole had a double ear infection diagnosed on Monday after we got home. He got a really runny nose and congestion, I'm sure due to allergies while we were gone.  Monday around noon he just started screaming.  I called Jeff and asked him to come home because Jamison had been crying all morning, Cole was whining because he wasn't feeling well and wanted attention since we had been gone for the week and frankly I just couldn't handle it.  I called the pediatrician's office at 1, they got him in at 3.  As soon as he started screaming I knew it was an ear infection, I asked if his ear hurt and he said it did.  He refused to take any medicine, though.  When we got home he was a different child, he took his medicine and was happy pretty much immediately.

Shortly after, on Friday, Jamison started having an allergic reaction to his septra.  It's an antibiotic that he takes to help protect him from a certain type of pneumonia.  It started as a few bumps on his belly, spread all over, turned to hives, then to target dots.  He had EN again.  We ended up having to take him to the hospital on Sunday morning because it was spreading around his eyes and mouth and he was starting to itch like crazy.    He was admitted and released on Monday after having a new inhaled antibiotic, pentamidine.  That night in the hospital was misery.  He was up every 10-15 minutes screaming in agony until about 4 in the morning and then up for good at 7.  This mommy was exhausted.  He had a similar reaction to amoxicillin but it was before he was diagnosed with cancer and while we were at the doctor pretty much every day he had it, it wasn't nearly as concerning as this time.  Jamison also didn't start eating any food until 2 weeks post chemo this month.  He just wanted to nurse all day, every day.  He ended up losing 3 1/2 lbs, so hopefully we'll find out Friday if he gained any of that weight back.  While he is eating now, he's mostly picking and throwing most of it on the floor.

It has been an extremely LONG two weeks.  He had a platelet transfusion on Thursday and his mood really seemed to pick up.  His platelets dropped to 10K, in Feb, they dropped to 9K, and Jan. 11K, so this is his third month of platelets.  But now he is running around being so giggly and laughing all day long.  It's great to see him and Cole so happy.  I just wish we could keep them like that.

April's appointments are going to be difficult.  He will have an MRI on Tuesday, EUA on Wednesday, chemo on Wednesday and Thursday, neulasta on Friday and then we'll fly home.  Please continue to pray for great news and wonderful results.  Also please pray that Cole has a smooth transition this month.

If all goes well at this appointment we should have May off, which is great because Cole's birthday is May 26, and we will go back in June.  But we have to wait and find out for sure.

Thank you again for thinking of us and praying for us.

Donate $5 and get a bracelet

We had some bracelets made for Jamison's cause.  These are the silicone bracelets, white because that is the Retinoblastoma color.  The front says Jamison's Journey and the back says Retinoblastoma Awareness.  We're asking for a donation of $5.00 and we'll send you a bracelet.  We have both adult and youth sizes.  You can email me at uscjayme@yahoo.com for more info if you're interested.

I took Jamison for a CBC today, he had one on Monday, his hemoglobin was low and they were talking transfusion.  The doctor was busy and the nurses and I decided to wait and see what the doctor would say.  They usually transfuse when the patient is under 8, his was 7.5.  He wasn't really symptomatic, though, so that was why we postponed.  He had a few incidents of being a little more tired than normal, but nothing terrible and with the warm weather it's hard to tell if that played a part in his sleepiness.  His CBC today came back with good news, his hemoglobin jumped up to 8.2 and his platelets jumped from 54K to 143K.  Now he has an extra week, since his ophthalmologist is out of town next week, to try to let his body recover a little more.  He did have a platelet transfusion last Thursday, his dropped down to 9K.  He was bruised from head to toe and he fell and skinned his knees and they wouldn't scab.  It's amazing how wonderful he is.  I'm so proud of him and Cole for being so strong.

I do realize they'll kill me one day for this picture, but it's nice to know they have some brotherly love at one point.  lol  

Rash

Jamison had a horrible night last night.  He just wouldn't sleep, woke up crying every 30 minutes or so.  He was constantly smacking, kicking, head butting us.  Cole was the only one who slept nicely.  Needless to say we were all a little grouchy today.  I guess Cole was feeding off of our bad moods because he wasn't a happy boy either.  After we got home from a horrible grocery shopping trip I saw Jamison's tummy had a rash all over it.  I called the clinic, emailed pictures and the return call was to say just keep an eye on him and bring him to clinic tomorrow.  We had plans to go tomorrow for a CBC anyway, so it's not a big deal.  I didn't really think that they would want me to bring him in and I didn't really want to take him to the ER.  The doctor was insisting it looked like bug bites, but it's not, there are no puncture marks, it's an allergic reaction to something.  This is how his rashes all start.  I stepped away for a few minutes this evening and came home to bathed and pj-ed little boys.  Jeff said his rash was looking better.  The good camera had a dead battery (of course!) so these were the pictures I was able to get.  Not the best, but when you have a screaming baby because he wants to go outside you go with what you can get. :)  

CHOP getting round 4 chemo, Feb 9-10, 2011

This is what Jeff and Jamison spent a good portion of Thursday doing.

His eyes are swollen from his EUA and he has his little horns, that blue marker does not like to come off.

All hooked up for chemo.

I assume throwing some sort of tantrum because we weren't allowed to leave the room. 

Time to leave this place!