HAPPY NEW YEAR

Happy New Year to all. After a few very long days at Stanford, Andrew did finally get his line pulled and is so happy to be rid of it. With a few pints (rbc's) for Xmas, the removal of the line, restrictions lifted (no longer has to have 24/7 care, doesn't have to wear the mask all the time, can reintroduce fresh food produce, can open doors and windows in the house, Stanford visits down to weekly ...etc) it was a very good Xmas and we are all looking for forward to a great new year. We hope it is a great new year to all of you too .... that you can leave behind/move on from the not so great things that happened in 2010 and/or you have plenty more of the really good things of 2010 continue and overflow into 2011.
Pre-xmas Stanford visit included a BMB (bone marrow biopsy). Results of cytogenetic test (look at the chromosomes) and degree of chimera ism (% of genetically distinct cells -Andrew's and Grant's DNA) will take a couple of weeks. Dr Negrin thinks that the recent decline in cell count (in blood) and ongoing anemia is due to Andrew's remaining  cells fighting or rejecting the new ones produced by the Grant's stem cells and that this will most likely resolved itself over time.

all I want for Xmas ...

Out at Stanford and Andrew is waiting for a bone marrow biopsy. What he is hoping for is that they will agree to pull his line today too. Both are early because his 100 days post transplant comes up in January and his main doctors are on holidays. He has done so well he's hoping they will opt for early rather than late. Will depend on his counts today he thinks. He would rather go with pulling the line and putting up with a poke when he has the blood draws and needs transfusions. That will hopefully reduce to once or twice a week. Lots of restrictions are lifted after day 100. Andrew can drive, start reintroducing some fresh produce into his diet, open the windows (fresh air), etc. I hope Andrew gets his line pulled for Xmas. He would love that. Think it might be a long day here today .... how many days til Xmas???? .... this elf has just not been very industrious!

Changing Meds

We come into Stanford three times a week. They take labs, do x-rays, check skin etc. For the last few visits Andrew's labs have shown a decline in blood cell counts (red, white and platelets) which is not what you want to see. He received a couple of pints of red cells last Friday which made him feel a bit better. This week the medical team met to review and decided that Andrew had engrafted so well that it was not likely to be due to a failure of his graft so decided it was due to drug toxicity. His meds have been changed but because the immune system has taken such a hit it will be a few weeks before they expect to see the upward swing again. Andrew has also had some GI issues and thinks that is related to same meds so hopefully that will resolve itself with the change too. Even with this hiccup Andrew continues to do very well considering. A new doctor on rounds this week and he was astonished to hear that this is Andrew's second transplant. He thought he just looked too good for that to be the case. This guy is about our age and was a pretty keen tennis player before deciding he wasn't going to make it beyond the satellite circuit and went into medicine. He and Andrew had plenty to chat about. Girls have had exams all week so the candle has been burning in our house day and night. We are all looking forward to Friday (2 weeks vacation time). Very frosty here this morning when I decided to go for an early morning bike ride .... brrrrrr my toes are still cold. Early moring (5am) swimming just finished for the year and doesn't resume until January 3rd.  Thought I would mention the cold to our Aussie family and friends because I think they might be sweltering at the moment. Looks like free "morning tea" here at the Stanford Cancer Center for Xmas. Will have to go and check it out! 

Early Xmas pressie

So at day 90 the transplant team would like to over 90% engraftment. That means they would like to see in a sample of Andrew's blood that over 90% of the cells being from Grant Johnson stock. Day 90 is around Xmas for Andrew. Well the good news is that the last test results have Andrew at just over 90% already and that is great. As a result they are starting to slowing wean Andrew off some of the immunosuppressant drugs. So far a some minor GI issues and we are out here today checking that out. His red blood cells are still being difficult. All his counts are hovering at the moment (that is the amount of each in a sample). White blood cells and platelets a bit low but red blood cells very low. This means Andrew is very tired and can't do much but we have managed two days to peek outside and go for a walk up to the park and back. Also means Andrew will probably need another transfusion either today or Monday. They do that when his hemaglobin dips below 8 and it has been just over 8 the last couple of visits. Can't believe it is almost the end of the year. Better get moving on the Xmas letters.  At the rate I manage to update this blog ..... don't hold your breath waiting for our card in the post. At least here in the US it is "politically correct" to wish folks "happy holidays" ... so therefore I guess I have more time :)  We have to attend a class today for what to do etc. after day 100. Bit early but with Xmas and New Year coming up, they have put us in an early class so we are covered. Wishing everyone "happy holidays"!!!

Thanksgiving

It is Thanksgiving here in the US. One of my favorite holidays. It is very still and cold, blue sky and sunshine, fabulous fall foliage. Families traditionally gather to feast and reflect on all they have to be thankful for. Turkey, cranberry sauce, green beans, yams, pumpkin pie seem to be the staples. We spent all day yesterday out at Stanford so two quiet days coming up. Andrew had been feeling pretty darn tired and no wonder ... very low red blood cell count ... and a few pints should perk him up for Thanksgiving. He is half way to day 100 (when he goes from being outpatient to clinic patient). Another blood test was drawn specifically to check engraftment count again yesterday (should have results in a week to 10 days) and he is about to start to slowly reduce the immune suppressing drugs. As the new immune system "wakes up" (the t-cells/killer cells) it will decide how to respond to its new/foreign environment. This is when graft versus host disease can rear it's ugly head. It's a bit of a catch 22. You want some "action" (recognition of the cancer cells and fighting them) but you don't want them to fight the good cells. Having a related donor should help. Kate flew home this week. It was so wonderful to have her for the 10+ weeks. She looked after Andrew (and the rest of us), the kids loved having their grandma around and I got to do some great runs etc. while she looked after the home front. Our place has never been cleaner and we have never eaten so well. Thanks Mum ... we are all very thankful for your help.

84% ...a High Distinction!

Ever since the slow start out of the blocks Andrew has soared over the hurdles smoothly. He tolerated the treatment well (first hurdle) and now has engrafted nicely. Results are in - 84% of blood cells are his donor, Grant's. That is a very promising result 35 days post transplant. Andrew says he gives himself an HD for that result. Next hurdle will be in about a month. If the trend of engraftment continues upwards, they will slowly start to "ween" Andrew off the immunosuppression drugs. This will "wake up" the T-cells. They will be Grant's T-cells and they will decide if they are OK living with Andrew's organs etc. or if they recognise them as foreign and decide to attack them. This is what they call graft (Grant) vs host (Andrew) disease GVHD and can come in all sorts of unwanted forms. Close monitoring and quick responses (drugs) etc. will continue to deal with any problems. We continue to come out here to Stanford regularly and have blood tests and chest x-rays etc. and adjust the meds. With a brand new immune system (like a baby) and immune suppression drug therapy, Andrew still has to live in his bubble .... special diet/foods, special mask to go outside, no doors or windows open, keep away from maddening crowds, no driving .... He is happy spending his days on the computer and is talking about bringing his bike in on the trainer to start training again....soon.
Angus turned 10 y.o. on the 5th. He wanted an icecream cake which Andrew isn't allowed so mum made Andrew his favorite cake too.   Andrew was first diagnosed a couple of months before Angus was born so he is over 10 years into this journey now.
Other news ... I joined Team in Training for another season to raise funds for Leukemia/Lymphoma Society (the training will also help keep in check the upward trend on the scales that is directly related to the good food my mum has been spoiling us with for the last couple of months) ... and my mum's time here is running out . Sadly, we will have to say farewell before the month is out. She has been such a rock and we are all going to miss her dreadfully. We wish we could hang on to her forever ... but we can't.

21 Years.

Out at Stanford for the usual checks and treatments. Last Friday they took blood to check for the percentage of cells that have engrafted. Takes a week so might not have that result today. Eagerly awaiting it though. The hope is for 50% or higher but if not, there is a full arsenal of drugs etc. to manipulate things apparently. Today we celebrate regardless .... 21st wedding anniversary .... looking back on so many wonderful, wonderful times and looking forward to many more.

Continuing on the upward swing

Andrew's platelet count is higher than it has been for many years and approaching near normal levels. White count is very slowly creeping up ... so all good news on the cell front. Red cells are always the slowest to engraft. I think at they will soon try to do a blood test to work out what percentage of his blood cells are his own and what percentage are Grants. It can take up to a year for full chimerism. So everything is going along as expected.

On the move!

Those blood cells are on the move! Monday and again today Andrew's labs showed increased platelet numbers, indicating that the cells are starting to proliferate. White cells were up slightly too today but still too low to get too excited. The red cells are last to engraft and so Andrew had another transfusion. Fatigue is Andrew's biggest issue, no other nasty graft vs host issues or anything ... so things are going well. He is also chronically low on magnesium (I think this is due to the drugs he has to take) so gets an infusion of those each visit. Day off from Stanford tomorrow and back early Friday morning.
I did the Nike Women's Marathon with friends in San Francisco on Sunday. This event raises money for the leukemia/lymphoma society. Met lots of "team in training" friends running (in the rain) -  all doing this "for Andrew" and others fighting blood cancer - so encouraging and inspiring.

How my days are spent

Well what have I been doing to keep myself entertained while confined to base with a lot of spare time on my side.  The good news is this transplant has kept my head in much better shape than my first transplant.  While I feel tired a lot of the time (no stationary biking yet), I mostly have  no problems reading (Spin by Robert Charles Wilson was one of the best science fiction books I have read), working out some algorithms that I just find fun, doing a bit of programming on our new PC (loaded with UBUNTU) and watching old streaming nexflix movies.

My friend John showed me a great website called the Euler Project (www.projecteuler.net).  Problems are presented and the idea is to write a bit of C code to solve the problem.  The problems start off pretty easy but get more and more complex.  In total you have 305 problems, the last ones look like you probably need a math Phd to solve.  I have just started but I am having a good time going through my old number theory books and papers.

So far I have been spending  Monday, Wednesday and Friday mornings at Stanford Hospital.  The time is spent taking blood draws, filling me up with magnesium and having platelet and blood transfusions.   My counts are still on the floor but am hoping they  will start climbing up in a week or so.   I usually don't do that much after a hospital visit.

Day +10

Well things have been progressing pretty much according to the plan. We head off to Stanford every other day. The nurse takes labs and vitals etc. While waiting for lab results there is either a chest x-ray or visit from dietitian or something or other scheduled. Labs take about an hour and a half and then they decide what's on the menu ... whatever it is for the day is hung from the IV (magnesium, potassuim, platelets ... more hydration) and drips in for a few hours. During that time the doc visits to review meds, check out skin rashes etc. We have the early shift (arrive 7am) and therefore usually done by noon. Apart from the fatigue, Andrew is doing/feeling OK. His blood counts are very low as Grant's stem cells make their way to Andrew's marrow to mature. It is important therefore to take all sorts of precautions to keep the germs away. We wash our hands obsessively, follow all the protocols for home (cleaning and special diet etc) and Andrew keeps away from the maddening crowds and wears a big old mask if he ventures out. With mum here to look after everything on the home front I was able to have a nice run on Saturday and watch both Angus and Alice play soccer on Sunday. Feels like we are having an extended summer here - nice!

New month, new moon, new man!

October 1st .. transplant day. All went well. The process was longer than anticipated because not enough cells were collected on the first attempt so Grant had to repeat his apheresis procedure again .  Andrew had one bag of goodies delivered in the morning and the second in the afternoon.  A few pints (no, not beer) on Saturday put the pink back in his cheeks and the skip back in his step. Nothing unexpected as of this morning. Grant heading back over the pond (to Australia) with his suitcase overflowing (he did a little bit of shopping while he was here). Enjoyed a delicious chicken and mushroom dish cooked by an anonymous iron angel and Pat's crumb cake (thank you to both). Thinking of our friend Alison and her family. Her daughter Adrienne lost a long and courageous battle with Hodgkin's disease a year ago.

Transplant Day 0

Not enough stem cells collected yesterday so Grant is out there doing it all again. About to take Andrew out now for the first round. He will then have a second round of the cells they are currently collecting from Grant.

Stem Cell Collection

Grant has been going in for neupogen injections all week to stimulate stem cell production. Early this morning he went in for one more shot and then his stem cells were collected by apheresis later in the day. Here is a photo of him hooked up for the morning with his blood coming out of one arm, spun around in a centrafuge to collect to white blood cells and then the rest returned through the other arm. This took about 5 hours and I think they said 16 liters (about 3+ times his blood volume) was circulated through. Will hear later today if enough stem cells were collected. If not, they will hook him up again tomorrow. Andrew went in for one round of radiation and a transfusion and we are about to go back for the second round. Tomorrow Grant's stem cells will be transplanted into Andrew via IV. Both snoozing now, need to wake Andrew to go back.

Well, we enjoyed the weekend off :)

Waiting for Grant and Andrew at Stanford. We came in yesterday for treatment and was told we should have been here on Saturday and Sunday. No-one told us! We blissfully thought (and enjoyed) a hospital free weekend. It did cause some confusion and delay etc. because it meant Andrew had not had labs done (to determine if he needs transfusion etc.) and hadn't had anti nausea drugs etc. administered in preparation for radiation ... but we got by and all done by 7pm. Hope it is earlier tonight so we can have a birthday dinner with/for Eliza tonight. Grant not noticing any ill effects from his shots yet he says. Andrew coping very well ... lack of energy issues (expected), skin infection which looks yuk but being treated, appetite good, spirits good not missing the big outdoors in this heat wave. So for those who have been complaining about not having much of a summer --- now you can quit your whining!!

Sunday

Wow, what a busy weekend. So good to have Andrew home and he too is happy to be home. Friday night we picked Andrew up about 7pm. and after instructions from pharmacists etc. it was home for a weekend of rest. Hospitals are not really restful places, even in isolation units. Friday night was also the wrap up party for my Ironteam. I tell you, Team in Training is the greatest organisation. We have made so many wonderful friends through TNT over the years. I was sorry to miss the party and seeing all our buddies we spent many fun (and challenging) hours with over the last 9 months. Like pennies from heaven the team delivered a ton of yummy food, gift cards and lots supportive and encouraging notes. What a team! We have a huge family of friends from walk/run/cycle and now TNT ironteam.
Our friends Una and Ken also popped dinner in the oven tonight and Maritza shared some delicious homemade Mexican food. It's a couple of months before training revs up again for the new season. I'll be ordering a larger wetsuit at this rate. We are so lucky to have such a great circle of friends. Again, a huge thank you to you all for notes and messages etc. They are the best medicine ...
Lots of soccer and xc running etc. for the kids and a huge gathering/picnic for our friend Tom who passed away from cancer earlier this month. Andrew could not join in but visited Tom a few days before he died. Tom gave Andrew some of his treasured airplane books - a passion they shared. I think Tom and Andrew shared a lot in common including their bright, positive outlook, their warmth and charm which attracts people to them, their good humor and determination to make the best of their situation and enjoy and appreciate each day.
Tomorrow Grant starts his regime and Andrew returns for more radiation. That continues for the week and transplant is scheduled for Friday.

Discharge from E1 - Stanford Hospital BMT Unit

Good day to report. When the ATG infusion (which they sped up a bit today they said) is done we can go and pick Andrew up from hospital. He was feeling pretty tired and a bit agitated (result of medications and hospital schedules) so will be very happy to be home. Weekend of rest at home before he and Grant go in each day next week as outpatients - Grant to get neupogen shots and Andrew for radiation. Just got to get them to schedule them together so we are not going out and back and out and back each day. At the moment they have Grant scheduled in the early morning and Andrew in the mid afternoon. My mum has scrubbed and sterilized every square inch of the house. We are all ready for the low microbial diet etc. Andrew's counts are very low so need all these infection control precautions. He has a special mask etc. He has been eating a LOT ... and puffing up with the steroids but not worried about it unduly as there is bound to be a time when he won't be feeling like eating much. Such a gorgeous day we have been able to sun dry all the bed linens etc. Apparently we are in for a hot weekend here in the Bay Area - for the first week of fall. Andrew wants the stationary bike set up in front of the TV. He is really keen to keep up as much physical activity as he can. He trotted around and around the nurses station with his IV pole daily in hospital earning him the nick name Phar Lap. Will update (or see if Andrew wants to) when he is settled in at home. Thanks to all for emails and messages etc. Andrew loves to get them.

Yay Andrew

Day 1 of radiation and ATG . Andrew seems to have had no side effects what so ever. They expect headaches, fever, shakes etc. etc. but he felt fine and no fevers. He hasn't slept much so a bit tired but doing well. It is only his second day and already the nurses are fighting to get him as one of their patients for the shift! He is a wonderful patient - very positive and cooperative etc. He told me on the phone that he has been having a bit of a walk around the room today - although he is tethered to his IV so has to take all his equipment with him so doesn't go far. Last night he had trouble sleeping due to running legs syndrome (which he is a bit prone to).  Grant (who has been so patient waiting to do his bit) and I are just going out to visit him now. Grant has been here for a month and has to be here for 2 more weeks. I'm sure he is missing his family (and visa versa). It is a long time to be hanging around. He said work has been pretty understanding, lets hope they too can hang on patiently for another couple of weeks. Will report again soon, hope Andrew continues to tolerate the treatment as well as he has so far.

Treatment starts today

Andrew checked into Stanford yesterday (after he phoned to ask if he could watch Angus play soccer first). Nice room for a hospital. He is very comfortable and surrounded with enough books to share with all the patients and staff . plus a few more. Now the hard part begins whereby they make him sicker in order to kick the cancer (radiation and ATG today). Will be a long day for him. 

Back on Schedule

New catheter has been place on the other side and so ready to proceed. Andrew will be admitted to Stanford tomorrow (Sunday) and stay for the week for radiation and ATG therapy. This will weaken Andrew's immune system sufficiently so Grant's hematopoietic cells will grow and function after the infusion. Lovely dinner at friends last night. Thanks to everyone for messages of support.

At last ... a bit of time to update

Hectic few days with visits to hospitals ... both planned and unplanned. Friday included a couple of trips to airports to pick up reinforcements (my mum from australia and Andrew's brother Grant who had been interstate). Andrew's hospital visit was a short one. Only a few (4) hours for the last couple of bags of antibiotics and then labs. Counts were low, especially platelets (25). Result - one of those nasty nose bleeds (gusher) that don't stop without platelets for clotting. Back Sat am for a transfusion of platelets. Sat afternoon a phone call from Alice's soccer game in San Fran to say she is with the paramedics because she got a hit to the head with an elbow and was knocked out and then confused etc. so another trip to ER (Peninsula up near San Fran this time). Another long session. Both patients were feeling a bit knocked out on Sunday but both fine and the first day (Sunday) in 10 without a visit to hospital. Phew ... a day of rest (so I slipped out for a nice long trail run and we all got to watch Angus's first soccer game for the season). No more fevers so on track to start treatment with catheter placement on Thursday and then admittance to Stanford on Sunday for the week (radiation etc.).

Line Pulled

Yesterday they pulled Andrew's line to be on the safe side. First they thought the cuff had come out but then found that that wasn't the case . They thought it best to remove it anyway . It's thought that there might be tunnel infection at the site. Andrew felt much better instantly (he really doesn't like the catheter). Still it will have to go back in again. New schedule now is to go in to finish the antibiotic infusions until the end of the week. Have a week off with going in every second day for labs etc and then check in on Sept 19th (catheter put back in on 16th).  This is a 2 week delay.

Non Admittance

Bummer, have to delay for a week. Fevers still coming and going. Looks like a problem with the catheter so will have to go back into surgery tomorrow to fix that. Maybe that is what is causing fevers. They are filling him up with antibiotics of all sorts each day to cover all bases.  Pretty much all day at the clinic today ... needing platelet transfusions etc. Ah well, feeling better now home and a good dinner. Perhaps and movie and then bed before heading back in the morning. Kids are getting good at washing/cooking/vacuuming ...YES!!!

Red Man

Yesterday morning was the radiation dry run. Andrew has hieroglyphics all over his abdomen. I thought they were making a shield to protect organs etc but actually it is done by imaging (directing the radiation where they want). That took all morning and he was home for lunch but developed a fever soon after. It was back to the ITA (Infusion Treatment Center) because Andrew is neutropenic (low white blood cell count and neutropils). Home again after 4 hours of treatment. They don't know the source of the fever and may not know in time to start treatment this coming week. Back in this morning for more antibiotics (intravenously) and still a low grade fever. Last night I think they all wanted to go home so had the drip going in a little too quickly and the result was "red man syndrome" - poor Andrew went quite beetroot and was very itchy. Not pleasant and when it started to happen again this morning they slowed the drip right down. Home again now and resting. Back again tomorrow for more ... and to see the doctors to assess next step.

Thanks

Thanks to everyone for all your warm wishes and offers of help. The catheter is in place and apart from bleeding issues (which is Andrew's main symptom - a very low platelet count which means no clotting) all is well. A transfusion before the procedure to boost the platelet counts helped. With Lizzie talking about the possibility of a nursing career, I figure it is a good opportunity to help out with the home care, nursing type duties (like cleaning up blood spills and flushing out the catheter lines). Just need to convince her. ;)
Waiting for a "dry run" at the radiation clinic. As they only want to radiate the lymphatic system, they have made Andrew a custom fit shield so organs etc are shielded during the radiation. Includes free tattoos for placement. He is having a fitting - of his new costume.
With the catheter in his chest, Andrew has to sleep on his back. Takes a bit of getting used to so he is tired and would rather be back in bed. He is hoping for a "quick fit". We have been told that they are very efficient and punctual in the radiation center so should be out of here soon.

Welcome to Andrew's Updates

We have decided to start this blog to keep you (family and friends) updated on Andrew's progress over the next few months. This way we can post an update once and you can access the blog if/when you want to. Other friends have used this format for similar purposes and it seemed to work well.
Andrew has signed off at work, will go in to Stanford to have his Central Venous Catheter placed tomorrow (6am), have a dry run for the TLI (total lymphoid irradiation) on Friday and then admitted to E1 (Bone Marrow Transplant Unit) at Stanford on Sunday. So it seems like a good time to start.
Andrew is undergoing a Non-Myeloablative Allogeneic Transplant.- a bone marrow transplant using his older brother Grant as his donor. The preparative regimen involves radiation to weaken Andrew's immune system. Then Andrew's immune system will be replaced with Grant's which will hopefully recognise and destroy cancer cells.
It is expected that Andrew will be in hospital for a week receiving TLI and ATG (Antithymocyte Globulin). He will continue TLI as an outpatient the second week and receive the transplant on the 17th. He will then continue as an outpatient for 90-100 days.
He hopes to be back to work within 6 months.
We will try to update this blog regularly.