Transplant Preparation

If everything goes according to plan we will be starting Shad's high dose chemo and stem cell transplant at the end of this week.  We have been super busy the last few weeks checking everything off of the list for him to be cleared by the insurance to get started.
First of all we were in the hospital for about a week, getting his stem cells harvested and then for his 2nd round of the regular chemo.  Before we left they were able to do several of the tests he needed. One day he had an echocardiogram, an EKG, an audiogram, and x-rays.  The next day he had a bone scan, and then we were able to go home that night.

echocardiogram

listening for the beep

adding the peg when he heard the beep

EKG

He had an MRI and a Petscan at Balboa a few days later which was a welcome event.  We have really missed our doctors and nurses there.  When we were leaving after the scans we even ran into some old friends who we hadn't seen since Christmas.

After scans, coming out of sedation

Janae, Shad, Trevor and I at Balboa

Shad had his first dentist appointment last week and did amazing.  Unfortunately they found two cavities which we then had to pay to get filled.  I thought it was kind of random that they wanted to put him to sleep to do it, but we decided we put him through enough awake that we would go ahead and do it that way.  The dentist was pretty sure they were going to need to do root canals with caps, so that would have been a lot for him awake.

Getting ready to have his teeth cleaned, watching Frozen

teeth cleaning

he was a little nervous as shown by him rubbing giraffes ear

That same day we also had our transplant meeting with the doctor and the case manager/nurse who we have been working with.  They went through their list of things they needed to tell us about, and we asked a few questions.  They had said it could take several hours, but we were done in about 1.  They went through the schedule of how things will go which was helpful because we hadn't really been told anything about that before then.  He will get admitted on day -5 and that will be a day of pre hydration to prepare for the chemo.  Day -4 to -2 he will be given the high dose chemo of Carboplatin and Etoposide.  Day -1 will be a rest day where they let the chemo do its job and monitor him closely. Day 0 will be the stem cell infusion also paired with lots of monitoring to watch how he reacts.  Luckily since they are giving him his own cells there should be no problems.  He won't (shouldn't) reject them because his body will recognize them and have no reason to fight against them.  He won't have to take any drugs or anything to help with that.   He will be on a neutropenic diet which I think will be hard for him (no fast food, and few fresh fruits or vegetables among other things).  On day +5 they will start giving him his GCSF shots again which he will have to have every day until his counts have recovered. He hates getting the shots every day (who wouldn't), but I am grateful that we will be in the hospital for most or all of them so I don't have to be the one to give them to him.  We will stay in the hospital until his neutrophils have recovered which takes 10 to 21 days after the stem cell infusion.  He has always recovered well from chemo, so they are pretty confident he will be on the shorter end of that length of time.  Right now the tentative schedule is about 3 weeks in the hospital, one week home, and then back to the hospital to repeat the process a total of three times.  My mom has decided that she will come and spend the summer with us to help out with Shad, and rotations at the hospital.  I am so happy that she made this choice, and words will never express how grateful we are to her, and the rest of the family, for taking time off from her life at home to come and help us.  Hopefully we don't all kill each other before the summer is over.

Daddy and Shad playing while we waited

having a snack while we waited

we even saw the helicopter landing on the roof

Monday the 12th we had another appointment for Shad at the hospital.  It was a physical to clear him for transplant, the last thing on the list, but was pretty much a waste of time.  We waited several hours to be seen, and when the doctor finally came she talked to him for about 5 minutes, poked his belly, listened to his heart and lungs and declared him good to go.  

We were scheduled to do his dental surgery on the 15, but a schedule conflict came up so they moved us to the 14 at 9:30.  We got there at 8:00 and filled out the paperwork, talked to all the different people and then waited, and waited.  He finally got taken back about 10:30 where they apologized for running a bit behind...haha.  They put him to sleep and then Trevor and I hung out and waited until he was done.  When they doctor got in he found that the cavities weren't as deep as they had first thought so they were able to just fill them instead of doing the root canals.  We were happy about that.

extra snuggly before surgery

waiting for the dentist to get started

still waiting

Aside from a doctor appointment for me, our week looks to be pretty free of medical appointments. Hopefully that lasts and we are able to do some fun things and get ready for the hospital.  

The Easter Bunny

  Today had a bit of a rough start.  We had an appointment to get Shad's counts checked, and were hoping to do a few other things while we were there.  I had an appointment scheduled at 8:30, but it was just down the street so we were hopeful it would all work out.  There was some confusion, a lot of waiting, and very little time actually getting blood drawn, but we made it out of the hospital by 8:25.  We booked it to my appointment, and arrived about 5 minutes late.  I was immediately taken back.  My blood pressure was a little high and the doctor asked if it had been a stressful morning, and Trevor and I just laughed.  She said she understood, and would wait a few minutes and take it again.  She had a hard time finding baby's heartbeat with the doppler so she brought their tiny ultrasound machine with a very fuzzy picture in to check it that way.  I wasn't too worried because I had felt the baby moving not long before, but it was nice to get to see him or her again.  The doctor is really patient with Shad and let him help her push buttons and identify parts of the baby.  He was excited when they said we were going to see a picture because he wanted to find out of it was a girl or boy.  The doctor said their machine wasn't good enough to tell that, so he was a little sad, but got over it pretty quickly once he saw the baby on screen.  She even gave him his own picture of the baby which he thought was pretty cool.
       We went back to the hospital to get the results of Shad's counts and also to give him his shot and get some help with a cap change question we had.  We ended up not needing to do the cap change until Monday, got the shot taken care of, and his counts were low but good enough that he didn't need any transfusions.
       As we were on the way out we were told that the Easter Bunny was going to come visit outside in the "garden" area.  We went out and waited in line.  Somehow, we must have looked nice or something, we were asked to talk to some of the news people that were there.  Shad wasn't very verbal, but cooperated.  Below are 2 videos that were shown on the local news.  Shad thought it was pretty cool when he saw himself on TV.

San Diego, California News Station - KFMB Channel 8 - cbs8.com San Diego, California News Station - KFMB Channel 8 - cbs8.com

Surgery and more...

Thursday was Shad's surgery for his apheresis catheter. He was scheduled for 1:20 and we were told he couldn't have any food after midnight, but he could drink clear liquids until 10:15. He had more than his fill of apple juice that morning.  We were asked to be at the hospital by 11:50 for check-in/registration.

We got here about 11:50 and checked in. We were then sent to the registration area to fill out and sign a bunch of paperwork.  We were then told to wait for the nurse to call us back to the pre-op area. We didn't wait long before he came and got us. We were taken back where they did his height and weight, gave him clothes to change into, and took his vitals. We were taken to a curtained area to wait our turn to speak with a nurse, the surgeon and the anesthesiologist prior to the surgery. Not too long after we got there someone came and told us the doctor had an emergency surgery so we were going to be pushed back about an hour.  We used the extra time to head over and register for our room at the Ronald McDonald house.  Shad thought it was a pretty cool place...too bad he will never get to stay there.  

When we got back we waited for about 15 minutes and then we were called back to pre-op again. They told us to go ahead and change Shad's clothes so he would be ready. He looked pretty cute.

Shortly after he changed the surgeon came to check in with us.  He was slightly friendlier than he was last time and actually spoke to Shad this time around which was nice.  The anesthesiologist came and checked in next.  Then the nurse that would be with him for the operation part came and talked to us for a while.  Once it was time to take him back she told us to give him a kiss, and she would take him from there.  He was a bit nervous, and while hugging me held on extra tights for some extra time, but once he let go he was ready to go.  She took him back through the double doors, and he stopped for a minute, but then continued on.  Trevor and I went to get something to eat, and were gone about half an hour.  As we walked back into the building the pager we had buzzed, and a nurse was waiting for us at the desk.  She said that the surgery was done, and we could follow her.  She took us to a little room and told us the surgeon would be in to talk to us shortly.  Apparently they come in and talk to the parents after the surgery to let them know how it went, and answer any questions.  We waited about 45 minutes, and the surgeon never came.  Finally Trevor went out and asked if we were still supposed to be waiting or what.  The lady at the desk said she would check and a minute or two later the nurse came back and said the surgeon was finishing some things in the computer, and would be right in.  We waited about 25 minutes longer before a PACU nurse came in and told us that the surgeon had forgotten to talk to us and was in his next surgery already, but that Shad was awake (and had been for awhile), and so she guessed ONE of us could go and be with him while the other waited for the surgeon.  I walked into the PACU and Shad immediately asked where daddy was.  I said only one person was allowed at a time, and this is the face that he made.  He wasn't too happy that only one of us could be back there at a time.  They said it was policy because there was only enough room for one, but there was plenty of room.

Trevor texted me shortly after that and said the surgeon had come in to see him, and it was a bit pointless (especially after all that waiting).  We spent the next almost 5 hours switching off back and forth while waiting for a room on the hem/onc floor.  Finally, about 9:00 Trevor came and got me and told me to just come back with him and Shad because all the other people back there had two people with them.  

About half an hour later we were finally taken to our room where we were able to get situated and go to bed.  It was a long somewhat frustrating day, but it ended with smiles, and I guess that is all that really matters.

And so it begins...

We met with the new oncologist at Rady Children's Hospital on Tuesday of last week.  It was interesting, and overwhelming, and good, and stressful, and hopeful and so many other things all rolled into one.  We were told to arrive 30 minutes early, and allowed even more time because we weren't sure what parking would be like, and exactly where the office was.  We ended up waiting about 45 minutes because we were so early.  There was a play area outside that Shad could see, but the doors were locked because it had been rainy earlier in the day, so he couldn't go out.  He pulled up chairs for him and giraffe, and sat at the window looking out.  It was pretty cute.

We did some enrollment paper work, and got him all registered in the system.  We read some books, and talked about what we were going to be doing with the new doctor.  Grandma Kitty was in town, and came to the appointment to help with Shad while we met with the doctors.  It was nice to have her there and she helped keep him calm and distracted in the waiting area.

When we were called back they took his height and weight and asked a few questions about his eating habits.  We were then taken to an exam room to wait for the doctor.  The nurse asked a few more questions and filled in some more information on the computer.  While she was doing that Shad started complaining about being starving, and soooo thirsty etc.  We told him that we would get something after we were done at the doctor.  The nurse finished up and said that she would bring him back a drink.  She came back with a whole bag of snacks that had been donated.  There was an applesauce, a bottle of water, trail mix, crackers and few other things.  He was in heaven.

After waiting a little bit longer the doctor came in and met with us.  She clarified a lot of background information about his previous treatment.  She examined Shad and then we were able to let him go out with grandma so we could talk to the doctor without keeping him entertained as well.  She gave us a lot of information about the plan for the stem cell harvesting and briefly discussed the later process of the high dose chemo and stem cell recovery.

The plan right now is to first place an apheresis catheter during a short surgery.  The same day that the catheter is placed he will be admitted to the hospital to start a round of regular chemo (Taxol and Ifosfamide).  As he recovers from that he will have his blood counts checked daily or every other day. When they declare it the right time he will have his stem cells harvested which will be about a day and a half in the hospital.  This will probably be hard for him because he will be hooked up to the machine that pulls his blood out, separates the stem cells, and puts them back in for anywhere from 4 to 8 hours. He will not be allowed to move around or do much during this time, which should be interesting.  This process will be repeated as necessary to harvest enough stem cells for the next part.

Once they have enough stem cells they will prepare for the high dose chemo.  He will have 2 or possibly 3 rounds of that.  Once he has that he will be given the stem cells to help him recover more quickly.  These will be at least 3 week hospital stays, with a lot of restrictions even at home.  We will find out a lot more about this as we go along I am sure.

I am a little bit stressed about not fully understanding all the restrictions and other things that will go into the recovery, but I feel like the doctor is trying to take things step by step with us.  The next time we meet with her I will definitely have a lot more questions to ask her.

The Plan

So, we had the meeting with Dr. Pene today.  It went better than I had expected in my head, so that was good.  Basically he told us that they are not going to do surgery at this point.  The surgeons and Dr. Pene talked and the surgeons basically said that they could do surgery, but if there is any other options they would prefer to go with those first.  Where the tumor is located is in his pelvic area is where they had done the surgery before and Dr. Christman said he was pretty much up to bone on the one side, and at his rectum/muscles in that area on the other.  He feels that if they go in to do surgery, they will for sure damage that and he will be on a colostomy bag for the rest of his life.  There is also a high risk that they could damage his urethra, and other muscles/things in that area.

The next option, and the one that he would recommend as the next step, is the high dose chemo with stem cell transplant.  This is where they first go in and harvest his stem cells, and then do the high dose chemo which pretty much obliterates his blood/immune system.  They then transplant his own cells back into his body to help him recover more quickly.  They usually do 2 rounds of this with his type of cancer.  The biggest problem with this is that the Naval hospital isn't equipped to do this procedure, so we will have to go to a different hospital that is able to do it.  Right now we are hoping that Rady's, the children's hospital in San Diego, will accept him and we can do it there.

So the plan of action is for Dr. Pene to do a referral for us to speak to the doctor we would be working with at Rady's, this is where we will receive all the specific information about the procedure and be able to ask our questions of someone who has done this type of thing before.  If that doctor agrees to do the procedure and accept Shad as a patient, then he will put the request into Tricare to be approved.  At the point Tricare will approve or deny the procedure, and we will begin the process of transferring Shad to that doctor's care for the procedure.  It looks like it could be a long process having to work through the insurance, and the other hospital, but we are pretty hopeful that every thing will work out and we will be able to give Shad this chance at being cancer free.

The high dose chemo is pretty much our last option from a chemo standpoint.  Once he has that if the cancer doesn't go away, or if it were to come back, they wouldn't be able to give him any more chemo.  They could do surgery at that point if there was something that could be surgically removed.  The last option would be radiation, but if the cancer is in the same area it is now that would be a huge deal.  The type of cancer Shad has only responds to high dose radiation, and so it would be pretty intense.  Although it could kill the cancer, it would also damage anything around it.  Since Shad's cancer is right up against his pelvic bone it would damage that.  As he grows, the area of his pelvis that was exposed to the radiation would not grow.  This would obviously cause a lot of problems, especially as he gets into his teenage years where he is doing a lot of major growing.

Dr. Pene ended the conversation with a simple I know this isn't what any of us wanted, but there are still promising options we can pursue.  I like that he is still optimistic, it is reassuring, but he is also realistic.  He doesn't tell us, oh this is going to be easy and wonderful, he is definitely straight forward and to the point, but he still offers hope where there is some to be found, if that makes sense.

More Scans and Results

PART 1: SCAN DAY
So, as many of you know Shad had scans last Tueday, the 11 of March.  We went into these scans hoping that they would be clear, and we could finally say for certain that the surgery had taken care of everything as we had previously thought.  We were concerned however, because we knew that Shad's AFP was still high, and so we knew that there had to be a cause for that.  I was secretly kind of hoping that they would find the cancer in a new spot, not because I want it to keep growing, but because then the previous surgery would have been  successful, and maybe they would be able to do surgery again, and everything would work out all right.

Shad was excited to get his pictures taken, and to see Dr. Pene and Nurse Jo.  He wasn't as excited about waking up at 5:30 (especially because he had snuck out of bed the night before and spent awhile making "concoctions" in the bathroom which resulted in falling asleep pretty late), getting poked, and not being allowed to eat or drink, until after the scans.

I had been worried because I got a call from neurology reminding us about Shad's scans and they said his MRI was at 10, but then I got THE call from the 4th floor (Pre-Op) saying we needed to be there no later than 6:30.  I was wondering what in the world they were going to have us doing for so long, but it all ended up working out quite well.  We stepped out of the elevator to find Dr. Wallace (one of the pediatric anesthesiologists) walking past.  He walked with us to the window, grabbed our chart, and told us just to go down to the PICU to get Shad accessed.  He had talked to one of the nurses there already and she was expecting us.  We didn't even have to wait in one of the surgery waiting rooms, or talk to one of the corpsmen upstairs, it was wonderful.  We headed down to the PICU where we waited a few minutes while the nurse finished up what she was doing and got everything ready.  Shad got accessed and it was relatively quick and easy.

We headed over to neurology/x-ray to wait for the anesthesiologist to come down and let us know they were ready.  About 7:45 he came in and told us it would be just a couple minutes.  Shad was in the room and asleep by 8:00.  Trevor and I headed downstairs to the Tricare office to try and get some things figured out regarding my pregnancy, referrals, and insurance (but that is a long story for another post).  Once we got all our questions answered and things figured out there, we headed back up to wait for Shad.  We signed some more paperwork for the pet scan portion of the imaging, and waited to be called back.  They were way ahead of schedule, and we went back to pet/ct scan room by about 10:00 (we weren't scheduled to be there until 11).  They did those scans which took about 30-45 minutes, and then we were taken back to the PICU for recovery/him to wake up.

Watching Shad come back from the anesthesia is pretty entertaining.  He just slightly wakes up and is ready to sit up and go.  He usually says some pretty funny things as well.  He started waking up and wanted some juice.  The corpsman would put the straw in his mouth but he wasn't quite awake enough to suck, or would fall back to sleep in the middle of drinking.  After he had finished one box of juice he pulled my head in close, right next to his mouth and started whispering something.  He was not awake so he was totally mumbling, and on top of that he was trying to whisper.  I had absolutely no clue what he was saying.  I kept telling him he was going to have to talk louder because I couldn't understand him, which was making him really mad.  Finally, we figured out that he wanted a popsicle.  The nurse was more than happy to get him one, and they even had blue which is his favorite.  Once he recovered enough, we took him to the bathroom, and helped him get dressed so we could go out to the clinic and get some blood drawn.

He was still pretty groggy and really dizzy when walking, so Trevor had to carry him.  We sat down and waited for Nurse Jo to finish up what she was doing.  She called us back and we got Shad's blood drawn (this was to check his AFP for the first time since his last round of chemo).  Once she finished she deaccessed him and we were on our way.  We ended up going to Panera for lunch (Shad gets to pick on scan days because he is usually starving).  It was nice to sit outside and eat our lunch together.

PART 2: THE RESULTS
Fast forward a few days to Friday morning.  The phone rings and I notice that it is the hospital phone number, so I am pretty sure it is Dr. Pene.  I answer, and sure enough, it is him.  He asks how I am doing, and I say fine.  He takes a deep breath and slowly exhales, which I know means it is not good news.  He then tells me that the scans are back and they were not what we were hoping for.  The area in his chest were they did the surgery is good.  There is still a little bit of "surgical changes" he can see, but no cancer (which makes sense, since when they took that section out it was biopsied and declared non cancerous anyway).  He then goes on to let me know that there is still cancer showing up in his pelvic area, on the right side.  Then, as if that isn't hard to hear, he goes on to tell me that his AFP dropped but not as much as it "should have".  It was at 485,000 the day they started chemo, and dropped down to 400,000.  This may seem like a good drop, but in the past with this chemo it has usually dropped to about half of what it started at by this point (that would have been down to about 240,000 or possibly more).  This response tells us that his body/cancer is not responding to the chemo like it once was, and means that the chemo is ineffective for getting rid of whatever cancer is left.  He went on to tell me that he was going to be spending his weekend researching, and was also going to try to call the doctor he had consulted before in Boston, and see if he had any recommendations.  He asked me to schedule an appointment for this coming Thursday, and said he hoped to have some options to present to us at that point.  He also let me know that he had showed the scans to the surgeons (the pediatric surgeon, Dr. Ignacio, and the Urologist, Dr. Christman).  He said "there is a surgery they are considering, but it is very morbid."  He went on to explain that it was not a a decision they would be making after looking at his scans for 5 or 10 minutes, but would take awhile to decide if they would even consider doing it at this point, with all the information about Shad in front of them.  He told me that if they decided it was something they would do, then we would obviously have a say in what happened.  He said he would see us next week, and ended our conversation with "have a good weekend" which I found hilarious at the time.  He had just told us all this not so good news, but still wanted us to have a good weekend.  Now, I think he really just meant there was nothing we could do at that point, so to just try and let it go enough to enjoy our weekend, which we did.

Surgery

My mom wrote an email to her friends and family which I thought I would copy and paste here, for any who were wondering how things went.

I'm not really sure at this point who I have told what to, so if this is all something you've already heard please understand.  First of all, I just want to say thanks to all of you for your faith and prayers and support in our family's behalf.  We do feel them and appreciate them and each one of you.  
Shad had surgery last Thursday.  It lasted  about 10 hours.  First they did pelvic surgery to try to remove the cancer in his pelvic area.  They made about a 2 inch cut on the underside of his scrotum and removed about 2 baby carrots worth of tissue from his pelvic area.  This surgery took quite a while because they would remove a small amount of tissue and then take it down to the lab where they would test it for cancer, when it came back positive they cut a little bit more and went through the process again.  When they got a sample that was cancer-free they cut a small amount more all around and called it good.  The surgeon feels that they got it all.  They inserted a catheter/drain tube just below his scrotum which was removed on Sunday morning.  He is experiencing more pain from this little hole, than from the surgery cut (which could be likened to an episiotomy).  It is in a place that gets a lot of natural irritation from walking and going to the bathroom.  He walks a little bit like a man who just got off a horse, but it doesn't slow him down much.
The 2nd surgery was on his lung.  It started about 7 hours into the surgery.  They made 3 small incisions to try to go in laproscopically, but his ribs were too close together, so they made a larger (still pretty small incision) and pulled part of his lung out to work on it.  There was a small spot that had lit up on the pet scan, but they could not find any sign of tumor on the lung.  There was a 3 to 5 millimeter (the right size for what was seen on the scan) discoloration on the lung which they cut out and sent to pathology. When the lung is cut into, it collapses, so they inserted a chest tube, which was removed on Saturday.  That was done under local anesthetic, and was traumatic for everyone, but it was painful to have in and he immediately felt better once in was out.
On Sunday morning urology cleared him to come home, but the lung doctor was at a different hospital doing emergency surgery for most of the day, so they just hung out waiting for him to come by and say yeah or nay to leaving.  Gardell and I arrived in San Diego, at the hospital, about 6:00 Sunday night, about the same time Dr. Ignacio finally made an appearance.  He checked Shad out and said he was doing wonderfully.  His comment was, "If you didn't lift his shirt, you wouldn't know this kid had just had surgery - 2 pretty major surgeries.  He is a trooper."  He then asked Shad if he wanted to go home.  Shad said, "tomorrow?" and the doctor said, "How about tonight?"  Hooray!!  The doctor said he would talk to the pediatric ward doctor and tell them to let us go home.
About 7 the peds doctor came in and said the info she received when she came on shift said that urology wanted to see him in the morning.  That wasn't what Jessica and Trevor had been told (they were told that he was good to go and to come back for an appointment a week from Tuesday.)  It took a while to check that out and then to get meds for home and to get ALL THE PAPERWORK done ...  We volunteered to vacate our room about 9:00 because they had new patients coming in and no where to put them and then we just hung out in the main play area until about10:30 when we were finally cleared to go.  Shad was bouncing off the walls by then and I'm sure all the other "sick kids" parents were thrilled when we finally left the premises.
We had a pretty uneventful day yesterday.  Shad has some pain, that is handled with tylenol every 4 hours, and is reluctant to poop (a common problem for him) but other than that he is almost back to his usual self.  He did take a 3 hour nap yesterday, which he usually won't give in to  and his emotions are a little closer to the surface, but over-all he is doing great!  All the reports should be back in about a week and he meets with both surgeons a week from today.  Jessica is calling today to set up an appointment with oncology to find out where they go from here.  The thought is that he will probably do at least one more round of chemo, but we will wait and see what Dr. Pene says.
Once again, thanks for your texts, calls, cards, prayers, love and support.  We definitely couldn't do this without you and without the comfort of the spirit.  Let us know when we can return the favor.  

There you have the basics of how it went.  Maybe I will add some more details about our stay at a later time, but for now this is it.