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.