First Chemo

Hi there,

Here's the news on Ian's chemo yesterday. The short is all is well.

The long is we left at 7:10 am and got home at 10:15 pm.

We arrived in time for Ian's blood draw to check his numbers. No needle since there's a PICC line - one good thing.

We met first with Dr. Newman and Dr. Link (he's the service chief (head?) of pediatric oncology) who went over all the chemo meds and other things. It's confusing, but essentially they're going back and forth between some of the meds to maximize effectiveness and minimize damaging heart, lungs, etc. I think Natalie will be sending you a complete list of all the meds, Dad. Dr. Link seems like a good egg and though Ian was tired, he joked with him some!

After lunch we went to Pulmonary testing Lab. Ian had a complete, 1 hour long, pulmonary function test to create a baseline. He had fun doing that and the technician enjoyed him, saying she'd never seen anyone come up with so many ways to use a nose clip!

After that we went back to oncology for the chemo and waited. And waited. We found out that not all the circling and signing had been on the treatment plan forms earlier, so we had to do that, twice. Plus, even though they knew we were there, Ian's name didn't get put up on the board, so after 90 minutes we finally went back and then waited a bit more. Sigh.

First anti-nausua med, then they come in all gowned up, covered head to toe. Why? We wouldn't want to get these chemo medicines on our skin, very dangerous. (And they inject them into Ian!!!) I know this is how it works, it's just a bit shocking at first. Ian just read his book throughout. Then they changed the dressing on his PICC line, using adhesive remover and some skin protection cream and put a stretchy cotton thing over the whole thing.

Since it was now 5:30 we went to Max's Opera Cafe for dinner. Ian really wanted to take Natalie there, but he complained of his arm hurting where the dressing had been changed. It got worse and worse. We ate quickly and went back over, but the Oncology Clinic was closed, so went to the Stanford ER. They pushed us through quickly for an ER, but we didn't leave til after 8. The nurse put cold compress on his arm til the Dr. came and that really helped. The Dr. figures it was a skin contact reaction to something in the adhesive remover and said the cold compress appeared to be the best approach for now, but not to let them use that same kind of adhesive remover in the future. Definitely!

So we blitzed home (2 hours). Ian got a bit nauseous at the end, a combo of the chemo and the windy road perhaps (normally he never gets car sick). I think we'll come home a different way from now on that's not windy. He slept well and looks good this morning.

One chemo treatment down, 7 more to go!

Love, David and Natalie

Getting a PICC line

Hello all,

We were up at 5 am to be at Stanford by 7:45 (made it!) and Ian started with a CT scan to the rest of his body that was missed last week, sigh.

While waiting for the CT, Dr. Neuman came to talk to us because we were not willing to have the PICC line inserted when we still hadn't heard final results and staging. She shared with us that as of now it's clear that Ian has no masses below his neck, but there is a small one opposite the side where the biopsy took place and also in lymph glands behind his face (sinus?). She was very reassuring and we agreed to move forward.

Then we met Dr. Donaldson and team (oncology radiation) who did another short exam and talked to us at length about the possibility of needing radiation after the chemotherapy. Ian was really tired at first, but pulled it together like a trooper. She, Dr. Donaldson, was clear that Ian's cancer is highly treatable and very likely will not need any radiation.

Back over to APU, Ambultory Procedure Unit, for insertion of the PICC line. There were an hour behind schedule so Natalie and Ian went to get a bite to eat while I went to check the car, which we saw hadn't been moved by the valet parking.

APU was really backed up and the procedure didn't start til 2 pm (2 hours late). After giving Ian a local they inserted the PICC line (purple!) which goes up his arm and ends just above his heart. Natalie was trained on how to clean and flush the line every day. Though I didn't think Ian would be able to handle this procedure with only a local (I'm not sure I could!) Ian handled it like a champ, though he complains that there's a tube sticking out of his arm!

Then off to Pulminary lab for a complete test to create a baseline. We were over two hours late and they were booked up, so we'll do it Monday morning at 9 a.m. when we come back to meet with team to have a final conference and then do his first round of chemo.

Natalie posted this last night on FaceBook: It's been a long day! But, we know Ian's cancer is low grade and only in the neck. He now has a PICC line for 8 weeks of chemo, starting Monday. Then, we re-evaluate and see if more needs to be done. Ian was a champ again and we are so thankful for a positive prognosis!

PS, the tire was flat and ruined, AAA put the donut on and I went to get a new tire. Tire shop pointed out that the front tires were unsafe and now we have 4 new tires! He did give us a good deal!

Test Day

David went with Ian to his day of tests on Friday since Helen and I were having our last rehearsal for this weekend's concerts we're singing in. I talked to Ian via cell phone several times through the day, which was great, and he really did handle it all well. Here's David's update:

Hello,

Just a brief update. I took Ian to Stanford Friday for EKG, Echocardiogram, CT scan and PET scan. Ian couldn't eat all day and stopped drinking from 11:30 till 7. It was a long day and he handled it like a champ. We went to Max's Opera Cafe for dinner, very good! We go back on Tues to get results and have another test and placement of a PICC Line. After that, Ian won't be able to swim until the PICC Line is removed...this is how they'll take blood samples and administer the chemo.

Ian's appears happy and well adjusted considering what he's going through. We're very thankful and blessed.

Our church and local community came over and supported us today by helping us deal with a yard run amok...truly a wonderful blessing. Perhaps we'll get some photos posted on Facebook.

Peace, David

Tests

Here's the latest in our journey with Ian,

We have a big test day tomorrow, the 18th. Ian can't have anything to eat after 8:30 since the scans require fasting. He'll have an EKG and echocardiogram (for a baseline heart evaluation), then CT scan (the higher resolution of the scans), then, at 5 p.m., the PET CT scan (with reactive dyes to ID areas of possible spreading). THEN he can eat!

We may also meet with the radiation oncologist. Next week we will have a Pulminary Function Test (a baseline for the lungs), meet with Drs. to discuss treatment and he will have a PICC line placed in his arm (NOT something he's looking forward to!) for the chemotherapy injections, which we expect to begin the following week.

The Dr. we spoke to today said she expects Ian is in a limited stage (though scans will confirm) and will undergo 8 weeks of chemo, then do a re-evaluation. If it's gone, there will be no follow-up radiation. Obviously, this is not a sure thing at all, but I was concerned we would have to go all summer with treatments and that may not be the case. Thank goodness!

We are very fortunate to have access to the leading facility for Hodgkins this close to us and to have such a curable cancer to deal with.

Our community has truly gathered around us. I am overwhelmed with all the weeds growing and work needing to be done in our yard. We put out the word and will have a crowd of people here on Saturday to help us get the yard in shape! One couple says they will help with some upkeep, too! The pottery class Ian and I have attended took up a collection to pay for 4 weeks of housecleaning for us! Wow. And so many people are there for us in so many ways. We are truly blessed.

Thank you all for being there for us, too, including all of you who will receive this note 2nd and 3rd hand! We are so grateful.

Love and blessings, Natalie

First Stanford Visit

I think everyone's prayers were clearly heard and felt today. We had a very positive day at Stanford, starting with beautiful clouds all the way down. We arrived an hour early and they got us started right away. Ian had a blood draw (he later joked with the Fellow interviewing him, "Yes, I've had this strange bleeding into needles and tubes lately."), exams by two Drs., a visit from a social worker, a chest x-ray and peed in a cup. The exams and chest x-ray show no other lumps or spots, but we will need to go back next week for CT and PET scans after Stanford's pathology lab confirms the Hodgkin's diagnosis.

There are still unanswered questions: i.e. strain, stage, treatment. Once we've had the scans know the strain and stage there will be a meeting to discuss treatment. Most likely it will involve weekly visits to Stanford for chemo.

I was impressed with the people and facilities at Stanford. Ian charmed the 2 Drs. with his positive outlook, knowledge of the disease and sense of humor. That's our boy! ;-)

Thank you again for your thoughts, prayers and love! love, Natalie

Diagnosis

Dear family and friends,

We just got back from seeing Ian's Dr. and the news is not good. Ian has Hodgkin's Lymphoma. They don't have the final pathology of what strain or what grade, but it is definitely Hodgkin's. We are assured it is treatable and the survival rate is very good. Apparently Stanford is the place to go for pediatric Hodgkin's and we've been given a Dr.'s name and # there.

Ian is in a bit of a shock, I think, though he is handling things pretty well on the surface. It's a bit of a challenge to be 14 and be told you have cancer when you feel basically healthy. We have a good relationship with him, but I know it's still a little hard to talk to Mom and Dad about how you're feeling. He probably doesn't really know how he's feeling himself.

I know in my head we will get through this, though my gut feels turned inside out - and our lives will certainly be turned upside down for a while. Thank you for thoughts and prayers. We appreciate them so much.

Love, Natalie

Waiting

Hello to everyone,

We have been impatiently waiting for news from Ian's biopsy and still don't know anything. But, the regular MD Ian sees called to set up an appt. to discuss the biopsy and it is set for tomorrow at 5 p.m. Between all the anxiety about having to wait, the fact that we are going back to the Dr. when I thought it would be the ENT and that the Dr. is staying after his scheduled hours to meet with us, I am pretty freaked. I'm trying hard not to pass my anxiety on to Ian - I even made him clean his shower and toilet today! But, I am so scared I don't know how I'm going to manage tomorrow. I am subbing for the afternoon, which is probably good. David's folks are coming this weekend, so I've been doing some desperately needed de-cluttering. And I've been trying to keep things as normal as I can for Ian.

Please pray for us tomorrow. Thank you, Natalie

Biopsy

Hello all,

Ian came through the surgical procedure well. The ENT told us he took

two pieces from the lumps to send to pathology. We should have a

preliminary report by Friday and a more final report sometime next

week. The Dr. said they were enlarged lymph glands. Although he was,

of course, not willing to speculate on what these lumps might be, he

was very reassuring that whatever this is, it will be treatable.

Thank you so much for your continued thoughts and prayers for Ian.

Love, Natalie