Appt for surgical consultation is set

We have an appt for Jan 4 to meet with the surgeon and discuss the biopsy. Will provide an update at that time!

PET results are in

The PET showed no change from before BEACOPP and after ABVD. That means the chest tumor seems to still be alive. There is a chance the PET is wrong so a biopsy is being planned. This takes special surgical skill given the location. Timing tbd. If it still is alive a new chemo regimen specific for Hodgkins will start. This is outpatient every 3 weeks for 4 times with a PET in the middle. We need to stay focused on the cure! The timeline changed but nothing more.

Bummer

Andy and Laurie went to UCSF as instructed. After a long while it was confirmed there was no need for the visit. They spent a day on the road, money and more energy than Andy has and he is very upset. He feels horrible and exhausted and his blood is hovering just above the threshold that would require another transfusion imparting they get home safely and that Andy starts feeling better. Also, the PET scan will be sometime in November. A day of disappointment

Back to UCSF

Turns out Andy needs to spend Friday at UCSF as part of the study protocol. We really were unaware until they called yesterday. We will need to figure out transportation and other details. Got to look at this as progress--one step closer to the point of being declared cure!

Wed Oct 10

Another day of blood work and another neupogen shot. No g I issues for about 12 hours and staying on bland diet. Andy seemed a lot more upbeat, even given the onset of the bone pain, and is anxious for "what's next". He's trying to be better about taking all the medicines to help with both pain and potentially even some sleep! The visits from last weekend by fantastic,caring and dedicated friends continues to buoy him up.

Tuesday

Andy back at local hospital with blood pressure issues. His throat is raw as well. We will see what they say

Monday

Andy felling very sick. Local hospital did blood work and put him on special diet for lower g I symptoms. Turns out potassium low so new pills added.

Sunday Sept 30

Andy is enjoying his weekend guest! Lisa has provided loving service with back rubs, massages, Thai food and other snacks. Andy is wheezing and has back end issues but continues with Chemo. You may be wondering what's next after this round of chemo. Dr A stopped by and said after this chemo the PET scan will be scheduled out about 30 days to give his body time to flush out more poisons. Depending on the PET, we will then plan next steps. I'm sure Andy could use amonth to recover and rebalance some.

Andy on the way to UCSF

Michael is driving Andy to UCSF at this moment. Yesterday they called and said come now but of course with a 6 hr drive and no ride that's impossible. Hope Andy enjoys his weekend surprise. Here's to a smooth (please) final BEACOPP!

Waiting for a bed

We are at the point of calling for a bed to become available. We really hope that happens today. Andy is really feeling poorly, some from the meds, including trouble breathing.

On a happier note, the folks in Tennessee are participating in a fundraiser for Lymphoma research. We will walk on Oct 12, including babies and children!

If you wish to support this cause, this link will take you to the right place. Any amount is appreciated and helpful

http://pages.lightthenight.org/tn/MidTN12/JWestbrook

Neupogen continues

Andy's having significant pain in his shoulders, back and knees. He's taking the prescribed drugs and hopes they will help. He forgets to eat so a gentle reminder may get some food in his stomach and help relieve light headedness. He's got a positive attitude and doesn't have energy to deal with rude people--go figure how ignoramus people have the gall to annoy him and name call. Cease!! Andy's working on finishing this round to get ready for BEACOPP #6. This will be a great milestone. Thanks to all the fab supporters!!

Neupogen pain sets in

Pretty much like previous chemos, the dang neupogen shots do great at stimulating the marrow but the pain that goes along with that is pretty bad. It's started now, but Andy claims he is tougher than the pain and I agree. Let's all hope it is more manageable this time around. He likely has 4 more days of shots and the pain intensifies during these days and only declines after neupogen has stopped for a day or do. Keep positive thoughts. Andy refuses to waste energy on down people and keeps a pretty positive look given all this. Let's keep his spirits buoyed over this next week.

Discharged!

Andy was discharged today and was soooo looking forward to seeing the special friend who was picking him up. This inpatient rotation went as smoothly as possible (once he got admitted). Now let's hope the outpatient neupogen shots and the associated side effects are tolerable. Thank you to all for the continued support

BEACOPP 5

Andy is sure feeling the effects of the chemotherapy, especially the prednisone.  It causes increased hunger as a side effect, as well as water retention and weight gain and he has it all, fortunately the primary effect of the medication is to decrease inflammation from the tumors and it has definitely done that for Andy!  I decided to go visit with him this weekend to try to lift his spirits a bit.  Although he has this tough exterior "I'm fine" I can tell this time spent in the hospital alone is wearing on him.  There is no doubt that the texts, emails, but especially the visits in the hospital really lift him up.  He hates that he continues to lose his arm and leg hair, more every week, he keeps rubbing his head as if it surprises him that there is just peach fuzz there.  His fortitude continues to amaze me!  Lets all keep showing him how proud we are of him and show our positive support to him during these difficult days ahead!

Admitted finally

After waiting for a bed to become available for 2+ days, Andy is now being admitted. He's 4 days Kate starting this round and feels pretty lousy. Likely a transfusion in the next few hours will help with that.

Labor day

Andy's tired today but the pain is manageable. We're very happy about that and know a lot of people pleaded for his relief. He goes back in tomorrow and has decided to keep positive thoughts that this next round will go smoothly.

Tuesday

Keys just say "terrible Tuesday" at least on the pain scale! The neupogen shots stimulate the bone marrow but that is extremely painful. Yesterday they pumped Andy fill of the best narcotics, and that did knock him out for 2 hours but the pain is not going away--yet. He's trying all the things to help. We've asked for prayers to help Andy's pain subside.

Discharging today

Andy is being discharged today. Michael is picking him up after his transfusion. He will then get his neupogen shots at St Joes this week. Andy is exhausted beyond words but doesn't complain.

Monday Aug 20

Andy is preparing to be discharged tomorrow. He is feeling especially unwell but looking forward to being released. There is currently a concern that required his daily blood draw to be repeated a second time. We think it may be related to the port flushing last night. Additionally they don't seem to be able to get blood via the port. Reason unknown. The pharmacist was prepping the needed meds for discharge. One day, one step at a time. Thank you for the support and love

Sat aug 18

Andy is doing his best to endure this round of chemo. It's been difficult and even more so with the serious illness and hospitalization of Laurie's mother. Andy can't wait to get released again do he can be an in person support for Laurie but will need to be vigilant in avoiding getting sicker himself

Little update

When Andy was admitted he got a shared room (bummer) and almost immediately got a roomie. The roomie then told the doctor about his bout with hand, foot and mouth disease that he caught from his brother (no they are not toddlers). Michael very politely inquired at the nurses station if there was any risk to him immuno-suppressed brother and within a few minutes the patient was reassigned. Really!! Andy immediately got a transfusion upon admission and has been getting blood again today for the last four hours. I hate to ask, but could everyone say some extra prayers and send Andy good thoughts? Looks like there's a little rough patch to get through and all help is appreciated!

Previous post was 2 hrs ago

Somehow upload was delayed. Good news. Prayers were answered and a bed is available. Michael will take Andy to San Francisco now. We hope to start day 1 tonight. Remember it's a minimum of 8 day inpatient so the sooner we have day 1 started the better. Let's also hope for a smooth process. Each round has been harder than the previous. Kill the cancer and it's all worth it!

Readmit for BEACOPP #4 of 6

The hospital is pretty full so it looks like the admittance may get pushed to Tuesday. Pray a bed becomes available today

Readmit for BEACOPP #4 of 6

The hospital is pretty full so it looks like the admittance may get pushed to Tuesday. Pray a bed becomes available today

Finally updating the blog

Sorry for delay. Please don't worry. Andy came home and went to St Joes for his blood monitoring and neupogen. They struggle to read directions so Andy continues to have to set them straight. He again tanked and needed the transfusion and then his numbers jumped. He's more tired and sleeping poorly. The pain this time was incredibly challenging but has gotten better. Andy expects to be admitted again Monday to do it all again. He's tough but so is battling cancer! He really appreciates those cheering him on, each in their way. I'll do better with updates! Promise.

Being released today for local outpatient

Andy believes he will be released today and is to go to St Joes for daily neupogen shots. The docs told Andy his risk is high do no going out in public and be on time for neupogen. They told him that an infection like a cold could kill him on 4 hours. Scary. This inpatient was marked by two patient deaths and this is very upsetting as you can imagine.

Transfusion today

On day 3 of this round, Andy's numbers are so low that he's getting a transfusion. It's his sister Lisa's blood which is kind of cool. Too bad he has to endure all this.

Tues July 24

I guess it's barf day again. He thinks it's the chemo but I've asked that the no hand sanitizer sign go back on his door. The smell makes him nauseas on a good day.

Andy is admitted for round 3 of BEACOPP

Yesterday Michael took Andy back to San Francisco for the 3rd of 6 rounds of the second chemo regimen. I just spoke with Dee and he's upbeat and positive about moving one more step forward in his treatment. He is in a double room now but thankfully has no bed buddy (yet). The little things to be grateful for. When I mentioned to Andy all the people checking on him and checking the blog and he was amazed and pleased. Thank you all!

Update

The hospital has a shortage of beds. As of last night Andy was 4th in the list and expected to be admitted on Sunday. This is about 4 days behind schedule. Waiting is hard. Let's keep moving forward!

Home!

Michael once again made the trek to San Francisco and brought the star patient back home. Yeah! St Joes will administer the neupogen for a week. Andy reports back to do this all again on July 19 (or maybe the 18th he wasn't sure). Let's home round 3 of 6 BEACOPP goes better than round 2! Today Andy gets to enjoy a day at home with wife, daughter and sister. The picture he sent me included a smile that said "glad to be home". It was cool that Andy's transfusion included blood donated specifically for him by family and friends. Pretty special way to show support and much appreciated.

Homeward bound Andy hopes sooner than later

Unfortunately Medi-Cal has weird rules about what meds can be given on an outpatient basis and that is what is holding up Andy's discharge. He hopes that he'll be able to leave today if authorization can be approved for outpatient Neupogen to be given to him from St Jo's in Eureka. He was happy to see Lisa and Michael on Friday, Lisa was able to donate blood for Andy, (it apparently takes a few days to process for directed donation) Michael and Lisa headed up to Arcada after visiting with Andy for a bit. Andy got moved to a better room on the 8th floor but unfortunately they don't have the room service menu that he has had in the past, so it is scheduled meals and no extra's. He has been hungry since, bummer! Blood transfusion again on Saturday, Andy wasn't sure which of the blood number's tripped the need for another transfusion, he tolerated it well. Keep your fingers and toes crossed that he gets to go home for about 10 days instead of only 7 between cycles.

Blood Donation info

Serena and I had hoped to donate blood last weekend in case Andy needs another transfusion in the next few weeks, but alas there are some restrictions...If a potential donor has had - piercings or tattoo's in the past year (with the exception of ear lobe piercings-go figure) he/she cannot donate Donor's must stop any aspirin, Ibuprofen, aleve (anticoagulant) 48 hours prior to donation. Here is their site link (http://www.ucsfhealth.org/education/donating_blood/index.html) The doctors anticipate that Andy may need another unit or two during this admission. Any donor who designates their donation to Andy will need a order form filled out by the staff and signed by his doctor prior to the donation and the unit is only good for a short period of time, I think that it is 3 weeks.  Thank you in advance if you are able to donate to Andy or to any other recipient.

BEACOPP ROUND 2 DAY 3

YES, Andy was pleasantly surprised to have visitors today and the collage was a hit. Thank you for the contributions to the collage! He is in a private room as of late last night, albiet not very large and it has the tinyest TV monitor that I have seen in a hospital room. He continues to have nausea off and on, but fortunately, didn't toss his cookies today :) Having new healthcare providers this admission makes everything redundant, as he continually has to explain what helps with what, why he doesn't tolerate the alcohol based hand sanitizer that they seem to prefer to use instead of soap and water. It has been a difficult hospital stay so far, but hopefully now improving since rooming alone. He is hopeful that he will be able to go home a little earlier this course of therapy, lab numbers will be the determining factor. Tomorrow includes 1 oral chemo drug and prednisone for the next 4 days, then another 2 chemo IV treatment on day 8 plus the oral Chemo and prednisone, then the prednisone and injectable Neupogen (caused severe bone pain) YUCK!!! Its really boring in the hospital, so keep those calls and text coming!

Saturday June 30 - a bit better

Andy's nice surprise today was in the form of two visitors. Look at the great photo collage they made! Thanks Chelle and Serena!

Friday June 29. Day 2 of cycle

First, Andy and his roomie figured out how to share the space. Neither feels good and neither want to be there. That said, today's a hard one! First the chest pressure ( which happened before and seems worse when he's getting all the extra iv fluids) burnout he barfing. More than 15 times already. We are all hoping and praying things turn around quickly. Chemo sucks but at least we know it's working!

Readmitted last night as planned

Well, sort of. The date was planned for round 2 of BEACOPP but they put Andy in a shared room which is not the correct protocol in his situation. Then they made Michael leave. Then the roomie arrived and was rude. Add all that up and the fact his white count was low so now he's being transfused! I trust he didn't sleep sine he's on the phone at 5am local time. So,we will see what happens today interns of moving him and for treatment. Today should be day one of the 8 day chemo regime with a ton of IVs and push fluids being started. This part was unpleasant last cycle with so much going through him. I'll update later today when the rest of the world wakes up!

Monday June 25

Andy's home but no longer pulling his hair out. Bad joke. The hair is gone and it's pretty hard to take. Andy was nice enough to allow this picture to be shared. Thanks for your prayers and support. It matters more than you know.

Saturday

Andy is happy to be home for a few more days and is not wasting a minute. He cannot go out in public even to the grocery store but that's ok. Unfortunately today he confirmed that he losing his hair. How he wished to avoid that side effect. Hope is grows back white-blonde and lush like when he was little.

Whoop !!!

Great news. Muscle man Andy has whipped his blood counts up overnight!!!! Everyone is elated. Michael will pick him up Thurs when he is discharged. No outpatient work needs to be done for the week he is out. Andy will be reAdmitted next Wed to do this all again. The bone pain should subside in about 24 hours. Happy day!! Andy appreciates the prayers and attributes this to the strong blood results today. Thank you!!!

Positive news today

Blood work today shows positive trend leading all to believe that Andy has hit the bottom for this round of chemo. (5 more to go). He has extreme bone pain likely from the neupogen that impacts his spine and pelvis today. If anyone has tips on how to deal with this symptom, please share. Thank you!

BEOCOPP Day 12

They were able to hold off another day for the transfusion, his numbers only went down a little more, not at the threshold for transfusion. We'll see tomorrow.

Day 11 of BEACOPP Trial

Andy's blood work started to tank yesterday, again today, probably will need a transfusion tomorrow. Dr. Andreadis reassured him that the blood bank supply they use is very safe. It is not unusual to need a transfusion with this chemotherapy, and may need blood again in the future. The medication he is given from day 8-14 causes bone pain as a expected side effect and that has held true for Andy. Unfortunately the pain medication only dulls the pain slightly. They have given him Claritin, (yes, the allergy medication) as it somehow has been shown to help this pain. It is unknown how it works but he's giving it a try. Obviously, he is majorly stir crazy, anxious to get out of the hospital, hopefully he will have a week reprieve from the hospital before his 2nd course of BEACOPP. Dr. Andreadis reminded him that he is actually half way through his chemotherapy as he is finishing the 5th course of the total regimen.

Friday June 15

Still hanging at the hospital. Blood work continues to look good. Only iv today is fluid to keep flushing the chemo and cancers out. Spirits are ok so far but really missing home. Likely another 7-14 days inpatient. Eats well and sleeps intermittent during the night partially due to hospital noise.

Thursday day 8 chemo cycle

The day started out rough with an aggressive staff member demanding Andy get out of bed! Turns out wrong room. Tough on sleepy guy. He just got the first of today's new chemo drug (B) and the second will be later today. Also started new drugs that are preventative as an anti fungal and anti biotic. Counts remain good and should tank quickly and deeply. One step in the process. Time goes slowly and that seems really hard for him. A few favorite people phone calls late yesterday really perked him up. Thanks to all for support!

Wednesday June 13

Day 7 of the 8 day chemo routine. Today is just the two P's with tomorrow being the B&O. Andy has had B before and the side effects from O are usually just bathroom related. Andy's blood work today is really good. Doc says he will start neupogen tomorrow night in advance of the counts tanking and will continue in patient for a week to monitor. Overall Andy has tolerated the rigor well. Last nights 11pm cocktail of Ambien and Ativan helped with the best sleep possible(given 4 hr vitals and iv beeping and medicine at 6am) He likes me to get hot chocolate about 9pm from the downstairs kiosk but today will be the last time for that. No outside food once he's on neupogen.

Tuesday June 12

Long night with little sleep, but else do you expect in the hospital? Today's blood work is better than expected and that's good. He's a bit more tired and bored. Looking to do this routine for a total of 6 times has him a little bummed out. He's still enjoying room service food. Today's chemo is another day of the two P's.

Monday Monday

If you asked Andy his biggest complaint is having his sleep interrupted during the night. He's pretty antsy as you can imagine and thinking about doing this regimen 5 more times is kind of big. He feels tired and unwell but all the drugs are managing symptoms well. Thanks to all who are checking in and texting him. He likes it!

BEACOPP DAY 4

Andy's labs are as expected. He's very fatigued today, feels icky and nauseated off and on. :(

Saturday morning

Andy has just ordered breakfast and visited with the doctor. His lungs are clear even though he sounds wheezy and feels constrained. It could be a result of all the fluids and so much laying down time. Today we will take more walks and visit the solarium and get more sunshine. One type of chemo later today. He's doing well overall and management of the systems is working ok. I like to visualize the tumors being broken up and every trip to the bathroom as removing more of the cancer waste.

BEACOPP Day 2

A few shorter delay's and a midday power outage in the entire UCSF hospital, which was barely noticed due to the back up generators.  We only noticed because the WiFi was down (obviously)  He's doing very well, albiet feeling weird and waves of nausea, no vomiting since starting the BEACOPP meds. He looks better than he feels. Fortunately his appetite is great!  With the encouragement of his nurses, doctors and family he has started walking 'laps' to help with his recovery, today-accompanied by Mommy dearest.  (Thank you Jeanne)  Here's his schedule:

DRUG/ROUTE	Day
*Bleomycin IV	8
Etoposide IV	1-3
*Adriamycin IV	1
Cyclophosphamide IV	1
Oncovin (vincristine) IV	8
Procarbazine HCl PO (oral)	1-7
Prednisone PO (oral)	1-14
Filgrastim SQ (as needed)	8-14

Friday - partway through the first round of BEACOPP

Andy was getting chemo up until about midnight and it continues today. He took a mild sleeping aid and had a decent night. While he feels odd and a bit shaky, he's doing ok. He continues to eat well. He's now challenging the tv game shows to see how much he can "win".

Plan for BEACOPP administration

The doctor came in and confirmed that the ABVD did have a good impact on the tumors but not good enough to avoid cranking up to the 7 element chemo. Andy starts tonight with most of the drugs then gets 2 of the drugs over the next week and then on day 8 we repeat today's 5 drugs. He's on the accelerated version of each meaning heavy duty. Side effects are expected to be severe. The next 7 days will be to monitor and treat the white and red blood counts and try to avoid any infections. We will see how it goes. Looking forward Andy will have 5 more sessions about 3 weeks apart each time spending at least 8 days in the hospital. How well he tolerates this weeks treatment should be a good indicator of how he will do overall.

BEACOPP ROUND ONE STARTS TODAY!

We got great news from Andy's Oncologist! He showed Andy and I the images of the PET scan before and after the ABVD chemotherapy and it is amazing! All the areas that lit up below the diaphragm are gone, and the only one remaining in the chest is the chest mass which appears to have dimished significantly, in the xray and the PET images show it about 1/3 or 1/4 of the former size. We almost cried, that is the best news we've heard in a long time! Andy has had nausea and vomiting this morning even before starting any of the meds, the Oncologist thinks it's mostly pre-treatment anxiety causing the nausea, acid reflux and vomiting. So, here we go!!!

To be admitted tonight

Andy will be admitted tonight. Chelle will try to meet up with him ASAP. Mom will arrive Thursday

Waiting for a bed to be available

Yesterday we got word that insurance is approved and now we wait for the hospital bed to be available. Chele is going to try to meet Andy at the hospital and get the medical details first hand to allow Andy to relax and take it one step at a time. She can then update this blog so everyone gets the info. Waiting Israel no fun. Let's get moving to get closer to being done with chemo and being well. Andy's Mom will stay in SFO with him for awhile and to help during this initial BEACOPP. So many people, some who don't know Andy directly, continue to send prayers and good wishes and this is so appreciated!

Friday June 1

We are waiting for insurance approval and then a bed at the hospital and this could happen today or even early next week. Once the call comes that they are ready for Andy to start BIACOFF he will leave immediately. He will be in the hospital for 2-3 weeks for the initial treatment. The info on the study that Andy is part of, and info on BOOCOFF are easily understood at a couple of web sites one is cancerhelp.com and or http://www.cancer.gov/clinicaltrials/search/view?cdrid=630501&version=HealthProfessional&protocolsearchid=10484996. Will keep you posted as we know more.

Results of PET

Based on the PET of last week they are going to switch Andy to the BIOCOPP treatment plan. The first cycle will be within a week. He will be hospitalized for a few weeks. Subsequent treatments are every 3 weeks. For info see cancer help.cancerresearchuk.org/type/hodgkins. We will update tomorrow night with the details of the plan

Thursday PET

Andy finished blood work and the PET all before 9am today. That's a lot on an empty stomach and so his stomach revolted! Now it's a drive back home and hope for positive results. We're not sure when the results will be shared so we are guessing early next week. I am seeing that Andy is feeling fat with all the medications making him puff up a bit. Im glad he is hungry and consider the pudge temporary.

Tuesday

Well, Dee says this round of chemo has been the hardest to bounce back from. Today he had a couple of ok hours but otherwise feels lousy. He is doing better on his water and eats well. The swollen feet are pretty much back to normal. Tomorrow we leave for SFO in the afternoon since his PET is scheduled for 7am Thursday. It will be a few days before we get the results.

Monday morning

Sunday didn't get better and pretty bad swelling by early evening inhospitable feet and ankles. Of course being a Mom I think he needs to drink enough water that he's whizzing every hour and of course told him. He may have had more sodium than normal on Saturday when he went out so that may explain it. So now we will focus on watching both sodium and water intake and also elevate the legs. The mouth and jaw seem ok. He just feels icky like nausea and fatigue will do. He eats ok and watches terribly manly tv. I'll post later today after he is up and around. Thanks for all the compassion and prayers.

Sunday. Not feeling so good

Andy's up but feeling pretty cruddy. He took all the medicines and is going to eat a little something. Hope this helps. I think he may go back to bed for a while.

Saturday

It's after 1pm and Andy is still sleeping. Guess that's pretty normal for two days after chemo. Yesterday he ate well and rested quite a bit. He was so anxious for his brother to get here! Cool to see. Andy grilled tri tip last night and was happy to finish off the night with home made cookies Yum.

Andy's chemo today

Andy completed another round of chemo today at UCSF. He had a private room which was nice. The blood overall looked good, which is a relative term. But he's hanging in! Next Thursday he is scheduled for his PET scan which will tell if the chemo Is effective enough. If not he switch to the nastier 7 part drug that would be weekly and inpatient We are on our way back up north.

Recovery from last weeks chemo

Andy is doing ok with this third chemo. Very tired and a sore throat but upbeat. It was nice to have two special friends visit for the weekend. Andy still won't wear the sexy face mask but probably should! He's eating well and hopes that will help with the low white count. He follows Aunt Lauras tips for enduring chemo. He has a new water system at home to help him get his 100 ounces a day in. Michael is in town to give brotherly love. Next week will be chemo number four! We amazed at the quality of care and appreciate all the support.

Chemo today

After some scheduling discussions, they actually scheduled Chemo for today. I'm anxious to hear how the port works. Hope he remembers to suck on ice chips since that seems to help the mouth sores. More to come.

Forgot to mention

Andy really appreciates the advice and tips offered. Laura you may be pleased to know that the mouth sores were much less this time and Andy attributes this to your suggestion of sucking on ice chips during chemo. Great way to make a big difference!

Sunday night

Talked with Andy tonight. Overall doing well! He has great things to say about his treatment group. He has his under skin port in and, although feels weird, is good. Suffered a little bit of nausea following last chemo, but the drugs got that in check quickly. He eats well and has gained weight but steroids play a part in that. Next step is chemo on Friday May 4. He appreciates all the kind people giving care and those that are caring! Chances of hair loss is 80% but usually happens by now. We will see!

Friday April 27

More stuff for Dee!

Andy and Laurie had appts in San Francisco this week kind of off the chemo schedule. Yesterday he got a shot to help boost his white cell counts. Today he gets his port.
I'm posting a picture from today and have to say he's a good looking guy! Started out as my smallest at Birth, progressed to being my most challenging per schooler to this fine man today. Love that smile!!

S/P 2nd Chemo...

I spoke with Andy last night, he sounded good although his mouth is just starting to get sore again. He was hoping he would be able to get another meal down w/o too much pain and he did. He said he is tired but not nearly as much as immediately after the first chemo treatment. (it's amazing how much our bodies can take) Anyway, he said that he appreciates all of our continued support and appreciates hearing from us. I think I speak for all of us, we hope that his energy remains, and his side effects are less and less as time goes on! KEEP FIGHTING THIS CANCER! XOXOXO!!!

Second chemo

I am sure Laurie will post when she gets access to the Internet. What she told me is that Andy did get chemo today along with all the wonder drugs to help with nausea and other side effects. However his white count is so low they debated if he was well enough but in the end he got it. He is also now on an antibiotic and asked to wear a mask to avoid catching anything. He will need to come back next week to check his white count again and to have a port inserted. Today took an hour to get the IV in and he was poked several times trying. We gave him advice on how to build up white count but he isn't too receptive. Similar on the masking up! We will see if he absorbs the info and decides to try some remedies.

Visit with Andy, Laurie and Scarlett

I came up to visit Andy and family and to pick up Serena at the conclusion of her spring break. I was pleased to see that Andy really looks better than prior to the start of Chemo. He still has intermittent nausea, and chest pain but he seems to have recovered from the chemo pretty well, albiet terrible mouth and jaw pain in the past week. He starts the drill over again this Thursday. :~(

Love of family

I've seen so much love and support for Andy and his family from friends, family, former family (lol) and just want to say thank you and it makes a difference. Andy is surrounded by wonderful people

One week

Today Andrew got up hopped in the shower and dressed. He spent the entire day out of bed with Serena and scarlet while I was at work. So today has been good, not a lot of jaw pain and his appetite is still good.

Almost one week

It will be one week tomorrow and Andrew still feels bad but has been able to spend the evenings with his family and sister. He is still eating well, not enjoying his food as much, but still eating nonetheless. I'm hoping to see if I can get him out for a touch of fresh air on Friday.

Better day

Today was a better day, the doctor was able to call in prescription for "magic mouthwash", it Is a concoction of lidocaine, Maalox, and Benadryl, it seems to relieve the pain enough so Andrew can eat a balanced meal. He has gotten out of bed today twice to eat and read some of his book.

Not so good day

Today Andrew has been in a lot of pain. His jaw and tongue hurt very badly, I called the on call doctor this evening and she said this is normal for this chemo routine and to start adding Tylenol into his pain pill regimen. This probably won't be something that will torment him everyday until the treatments are done but will probably happen everytime he receives a treatment for some days. Andrew couldn't enjoy the ham my mom cooked because of the salt, but one of Andrews favorite, my moms homemade drop biscuits, saved the night. Hopefully tomorrow will be better :)

Cancer Topics link

I don't know where the link went... See the blog below and cut and paste the link. :~( Chelle

I found a useful site you may want to check out...http://www.cancer.gov/cancertopics/coping/chemotherapy-and-you/page5 As you probably know, fatigue is a major side effect of chemotherapy. Fortunately the health care providers have the side effects pretty well managed preventatively with a variety of medications and it sounds like they are working pretty well. The only medication that Andy is taking that causes the double vision is the Ativan, and the dose may need to be adjusted to remedy that. I hope that all the rest he is getting will help the drugs fight these cancer cells successfully. Happy Birthday to Scarlett! Happy Easter to all!

Day two after treatment

So here we are coming to the close of day two after treatment and Andrew has spent the entire day in bed. The ill effects so far are constipation, a sore mouth, and double vision. Despite the latter he has eaten and seems to keep it down well. Tomorrow for Easter we are going to celebrate Scarlet's birthday with an Easter egg hunt, presents, and dinner afterwards at my moms. Andrew has said he probably won't make it to the party, but will most definitely come for dinner.

First day After treatment

The first full day is coming to a close now and Andrew made through with just a bit of fatigue, so far no nausea, yay!! *claps hands*. Serena, scarlet, and I went grocery shopping today and Andrew and Michael went out and about. Andrew says that he needs to keep himself busy to keep his mind busy as well as not letting his body slow down. I reassured him that he can't get ambition confused with actual fatigue. I will try to post again tomorrow night sometime after 7pm pst to let you guys know how day 2 went. The doctors and NP told us its very possible he won't feel the full effects until about 48 hours after treatment.

Post first treatment so far

We are home now, Andrew is sleeping as I write this this morning. He was very fatigued and pale looking by the time it was all over with yesterday. He ate two helpings of lasagna and bread last night for dinner, I think this is a good sign? Maybe loss of appetite won't be a symptom for him? I think it's to early to tell for sure though.

Pictures

I added some pictures to the post just previous to this.   You can see Andy last week (the kung foo move) and today getting hooked up for his first chemo.   I also include one from when he was in the hospital for the week and his friend all "masked" up in case Andy was contagious.  We thought it was funny.  Finally, two pictures of people Andy loves a lot (maybe the most... but I hope I fit in near the top of the list!), Laurie and Scarlet doing normal things a few weeks ago and checking out the Easter bunnies.   This is very real today, so I wanted to include some normal stuff too!   Thank you all who are helping --- it's a coast to coast effort with great people helping in the way they are able to.  It's been awesome to see this and I thank you.

First treatment

Serena, andrew and myself are at the hematology/oncology department at UCSF Andrews IV is now in and he is hooked up to a saline solution. Andrew is at his wits end as far as being stuck with needles but the nurses have said its going to be a big part of the process. Serena is coming up to humboldt for a couple of weeks to help out around the house and help Andrew get settled. I will update again as soon as treatment is done.

The time is set

Andrew finally has a date and time set for his first two chemo sessions, they are going to be at 9 am this Thursday and 9 am on Thursday the 19th. The nurse we met with today said that Andrew should be pumped full of enough steroids and anti nausea meds via IV that he shouldn't feel to sick until about Saturday, so we should get home just fine. Andrew hasn't been sleeping well or eating a whole lot lately but is hanging in there. His moods have been up and down but I think when we see the doctor he usually walks out feeling better than when he walked in. Michael was having a hard time in the beginning but he seems to me to be in better spirits than before and is trying to keep his chin up for Andrews sake. I have a couple of pictures that Andrew wanted me to post but I can't until I get home to my computer so keep an eye out.

Big week ahead

It looks like things are going to be moving in April! PET scan tomorrow. Also tomorrow is the formal admission to the study and the accompanying paperwork. Chemo is set for Thursday. We all pray the chemo kicks lymphoma &@) from day one. Second prayer is for Andy to tolerate the chemo reasonably well. We appreciate everyone's support for Andy, Scarlet and Laurie as well as Michael.

Progress

Andy and Laurie have been in San Francisco since Sunday as required for a series of activities required to be completed prior to the start of chemo. We also have been waiting for insurance approval on the treatment plan which has delayed chemo. Good news yesterday is some progress on the insurance approval. The PET scan is now scheduled but chemo may not start until next week. We are looking for places near by San Francisco to stay when needed for appointments and are trying to keep costs down. If anyone has ideas on inexpensive rooms to rent, that could be helpful.

Delays?

The clinic called today and said they are waiting for Medical to approve the treatment. Since they have not authorized, the clinic doesn't want to schedule for Monday. Laurie has a call into the doctor , via his nurse, to try to get things moving. Andy really needs to get the treatments started ASAP as we have been told by all doctors for the last three weeks! Let's all pray we get this approval in ASAP!

First treatment

Andrews first treatment will be either This coming Monday or Tuesday. We will be heading back down to SF this Sunday so he can be there for another PET scan on Monday morning. Andrew decided to sign up for a study that involves doing two months of the regular chemotherapy regimen and if the cancer isn't responding bumping the chemicals up and proceeding with the German method Jeanne wrote about, this is why he needs to have another scan done. Andrew is really scared about starting the chemo and fears he is going to be miserable throughout the entire time. The doctor did mention that he has patients that find the chemo gives them relief from the uncomfortable symptoms they had been experiencing from the cancer, so we are keeping our fingers crossed that these reliefs will override the negative effects of the treatments. Scarlet will be staying with my mom again next week while I go back to SF with Andrew she is doing well and enjoying the time with Grammy I think. The hospital is going to hook us up with a social worker to help us with lodging at a discounted rate. I think this concludes pretty much everything I have for tonight. I feel like I'm forgetting something so I might be adding to this tomorrow sometime. We want to thank everyone for there love and support.

First clinic appt today

They just left the first outpatient appointment and things are moving quickly. The bone marrow results are back and it's good news--- no sign of cancer there so we are a Stage 3. The doctors hope for the first chemo this week and believe he may get some relief from his symptoms following the first treatment. They will do the four part chemo we were told about twice and then redo the PET to see how the cancer is responding. If not responding as hoped, they would move to the German chemo that could have more side effects but also kill the bugger cancer cells. The docs don't think travel to and from San Francisco is going to work as chemo progresses, so we may need a back up place to stay near SFO. Time will tell. We are all anxious and nervous for chemo to start, but need to push through to get to the final treatment and be cured.

Saturday March 17

Andy is happy to be home and is hoping to catch up on his rest. He feels really tired as you could expect. He expressed his thanks for all the good wishes and prayers. He is eating well and his body is tolerating the current medications just fine. He has the appt Tuesday at the clinic, so we may know more after that about the treatment frequency and the like.

Andrew wanted to share this

Hodgkins Lymphoma Video

I thought everyone might like to see this informational video that I came across. I found it to be interesting.

Hodgkins Lymphoma

Home at last!

We made it home around 5:30pm this evening and all three of us have been taking in are much needed R&R. Andrew is very sore and says it hurts to swallow. But he is still in better spirits than he was when this adventure started. He is anxious to get the chemo started and hopefully start feeling better soon.

Discharged from hospital

Andy was discharged about 6pm Pst. He is really really tired and a bit sore and has checked into a hotel to rest before returning home tomorrow. He is on many medications including pain meds, antibiotic,etc. his first outpatient visit is Tiesday of next week. Until then he is to eat well, rest and take walks. We are all anxious for the tumors to shrink and give him relief from the chest pressure.

Out of surgery

Dpctors said the excised biopsy went well and they got what they wanted. He will be back in his room in a couple of hours he has a small drain that will come out before he is discharged tomorrow. All is going well.

Off for surgery

They just came to take Andy for the surgery to remove one of the nodes from his neck for biopsy. This will help with defining the sub-type of disease Seems he left om his wedding ring so Laurie is on her way to pre op to get the ring and, probably, an extra kiss. After this, we promised Andy we would get him food and he is thinking Thai sounds good

Bone marrow biopsy done

Andy was awesome. As we're the drugs, and had a successful bone marrow biopsy this morning. He is hungry but won't eat until after the surgery on his neck that will happen later today. These both are needed for staging and sub-classifying the lymphoma. The staff here continues to amaze and exceeds our expectations. We are blessed for sure ill post again after the surgery.

Today's Update, BIOPSY DAY :~(

So, as you have seen, Andy is having a bone marrow biopsy today, they will also be taking out the large lymph node in his neck.  This was the one that was biopsied with a fine needle on Friday.  His type of cancer is either stage 3 or 4 Nodular Sclerosing Hodgekins Lymphoma. They hope to get more detail to guide their treatment regime from these biopsies.  It is expected to take 7-10 days for the biopsy results to be completed.

Just FYI, here is the criteria for the staging of lymphoma:

The stages of Hodgkin lymphoma are as follows:

• Stage I: The lymphoma cells are in one lymph node group (such as in the neck or underarm). Or, if the lymphoma cells are not in the lymph nodes, they are in only one part of a tissue or an organ (such as the lung).
• Stage II: The lymphoma cells are in at least two lymph node groups on the same side of (either above or below) the diaphragm. Or, the lymphoma cells are in one part of a tissue or an organ and the lymph nodes near that organ (on the same side of the diaphragm). There may be lymphoma cells in other lymph node groups on the same side of the diaphragm.
• Stage III: The lymphoma cells are in lymph nodes above and below the diaphragm. Lymphoma also may be found in one part of a tissue or an organ (such as the liver, lung, or bone) near these lymph node groups. It may also be found in the spleen.
• Stage IV: Lymphoma cells are found in several parts of one or more organs or tissues. Or, the lymphoma is in an organ (such as the liver, lung, or bone) and in distant lymph nodes. 

Here's a good link to additional information:
Hodgkins lymphoma

We all hope that the bone marrow biopsy is less painful than Andy is anticipating!

Lots of stuff

The fine needle aspiration indicates hodgkins. This has a very high cure rate but takes time. The born narrow test , scheduled at 8:15 Tuesday, will tell us the stage. Right now a 3 and if the narrow is clear will stay a three. There are 5 kinds of Hodgkins and 4 are treated the same. Likely this is classical modular sclorosing. Chemo is the therapy. Likely the 4 drug type called ABVD given once every 28 days for 6-8 cycles. Tomorrow will also be the excision of the node in the neck. Wed will be echocardiogram. Andy's in good spirits and positive in the outlook.

Sunday eve

Good news! It's been confirmed that Andy will have general anesthesia and have the two procedures done at the same time. The neck excision is a bit tricky. He's happy that he won't feel it. I know I feel that we are in capable hands and are so very blessed.

Sunday afternoon

They requested visitors wear masks in the event that Andy has a flu on top of everything else. It feels like this is precautionary but they really don't know. They swabbed his nose to find out more. Andy has eaten well and won't eat in the morning as a prep for PET scan. All is well. Andy is learning to get in front of his pain to best manage.

Sunday

The team here is fantastic. Kind, compassionate and highly skilled! Today will be a quiet day with much of the staff is off. Already 3 doctors gave been in and seeing to Andy's comfort. His breathing and pain are well managed. Tomorrow will be a big day with the bone marrow biopsy, the PET scan and likely excision biopsy of the neck. Andy hopes they will help him deal with the pain and they've agreed! By Wednesday the team should have a treatment plan outlined. His current room is complete with a distant ocean view and is very nice. He will move to the 11th or 14th floor tomorrow

Saturday Morning - Andy's Birthday!

It's a good thing Andy is inpatient.  He is wheezy and congested and they are concerned about pneumonia.  White count up to 22,000.  Treatment now is albuteral and they are working on a PET scan, but that won't be til Monday.  Steriods may have altered the accuracy of the needle biopsy and if so, he will need to have an lymph node excised.  Glad he's in the right place with good people who know how to diagnose and then treat.  Not the happiest Birthday, but one to celebrate until we can throw the wild party next year!

Message from Andy

Andy wanted me to post a message to convey his appreciation to everyone for their well-wishes and prayers. It means a lot!

Progress!

Andy has been admitted and they just did a needle biopsy into his neck (ouch). Word has it that he was pretty brave! The Doc said the team will gather together and review the situation and put together a plan. How grateful we are for good medical care, kind people and a focus now on getting Andy well.

Thank you, Lisa and ICS Legal team, for creating the legal document we needed today.

Not a lot to share--- but Andy and Laurie did arrive in San Francisco last night, about 8pm.    Today should be a pivotal day!

Lab Update

I hoped to put the spreadsheet here for Andy's labs, but I can't figure out how to post a document, so here's the overview, last year Andy's "sedimentation rate" AKA-"ESR"was elevated-49 (normal values less than 17) they did repeat the test a couple of times and it remained the same till 3/6/12 when it had increased to 112.  (this is a large inflammatory change) In addition his WBC's now are High-17.9 (normal-4.5-10.5)  Initially thought to possibly be due to a lung infection which they initially treated with antibiotics Zpack , then Doxycycline plus Prednisone to hit the inflammatory changes (which did seem to make Andy's symptoms improve)  He has developed mild anemia over the past 2 years which could be attributed to not eating well but in light of the other labs and CT is probably due to the lymphoma.  He also has developed elevated platelets 630 (normal 181-353) which puts him at risk of having clots in his blood vessels and organs. 

If any of you want a copy of the scanned CT scan, Andy or I can email it to you.  I also mapped the tumors on a word doc but it doesn't view correctly in my iPhone or my iPad, but does on the computer, if anyone is interested in it.

Wednesday eve

No update on today's CT scan taken today. Things move slow, but then they will likely go fast! It's hard for Andy to breathe with the mass in his chest and he may get to San Francisco even before they make him an official appointment. We hope to get the biopsies done quickly after he gets into UCSF. Laurie and Michael will be there and then things can start moving ahead. Everyone has a positive attitude and is committed to getting this thing treated and resolved. Keep praying for comfort and guidance if you would please.

Insurance update

Good news!  Medi-cal was just approved.   Whew!  Thank you, God!

Tuesday March 6

Family conference call helped us all understand the medical aspects of the situation as well as to plan for the next few days.   Wednesday will be the next CT scan (abdominal), following up on Medi-Cal and taking care of other details such as school and documentation.   UCSF has accepted Andy as a patient and is sending the forms to get things started.  They will also say how much money they want for the consultation of course. 

The size and location of the growths are impacting respiration and there is a risk of blood clots, both issues making extensive travel dangerous.

As of now, we plan to get biopsies done at UCSF ASAP and then make the next plan.   The family that prays together stays together and we need it now more than ever!

Chelle is helping monitor and decipher medical results.  Julianne is helping with keeping the medical billing straight (with Laurie's help on appointments and services rendered record keeping).  Lisa will request help from her attorneys with legal documentation.  Michael's role today is to keep the family in Nor Cal positive and provide whatever physical support they need.   Mom, and Dad, are ready to jump on a plane as soon as Andy says "come".    Scarlet is going to provide her Daddy with great love an comfort as does Laurie.  IGBOK!

Andy's Journey

This blogspot has been set up to allow the family to keep up to date with information related to Andy's medical challenge.  We are early in the journey and will have family members post updates as appropriate.