History

Sunday, July 19, 2009 9:51 AM CDT

I am extrememly happy to say that I am writing this overdue update from the sunny countryside of Cumbria. Yes, we made it to England after all. Kind of a last minute decision especially in light of the swine flu risk.

I flew over with the kids at the end of June on an uneventful flight and I drove down to London last week to pick up Graham, who was just in time for Ben's 10th birthday on Friday.

Graham's brother and Jane were up in Cumbria for two weeks at the start of our holiday so we were able to spend precious time getting to know their gorgeous kids, Emily and Joseph. They were very young on our previous visit two years ago and this time Ben and Jessie revelled in being the older cousins and were thoroughly charmed and entertained by them.

Last weekend, we saw my sister Netta's family and were hoping to see them this weekend again but she is unwell now (with probable swine flu but doing OK). We are obviously keeping out of shops and crowded places for Jessica's health and although there are so many friends we'd love to catch up with, it is tricky in the circumstances. However, please let us know if you find yourself in the vicinity of Lancashire/Cumbria and we will try to work something out. I am hoping to phone everyone at some point to at least catch up now that I have free time with all grandparents around!

Tomorrow is Jessie's 4th transplant anniversary. After her questionable scan in April she has been having very regular trips to clinic for physical examinations to monitor possible enlarging lymphnodes. In May we made the decision to come to England and not have further scans until after we return to California on 7 August. Jessica's EBV did get back under control when we put her back on her antivirals and apart from a weird stomach bug that had her missing school for 2 weeks and a couple of odd worrying bloodtest results she has been doing fine.

We are really enjoying carefree time with the grandparents and the countryside. We are staying at my parents' house, they are doing so much better since I last saw them after the accident last year. My mother is walking well up to a few miles, but can't bend her legs to get down to the floor, climbing over stiles or up swimming pool ladders is also difficult. My dad is very busy in the garden and the kids help with picking raspberries and currants, pulling up potatoes and onions, and other jobs. They've also been busy building dens in the woods, catching fish and frogs, feeding ducklings, damming rivers and other such important activities.

I will post some new photos later this week and also try to get some video onto my newish Facebook page which I'm trying to get to grips with. We can't wait to catch up with your news and look forward to talking soon.

Hope your holidays will be at least as wonderful as ours.

Wednesday, April 1, 2009 6:45 PM CDT

So Jessica had her repeat scan a couple of Saturdays ago. I pulled it forward with permission from the drs as it is so hard to wait and wonder. We got the results the following week but find ourselves in the usual state of limbo.

Jessica's appendix still lights up as a hypermetabolic area. Looking back at previous scans the drs say this area comes and goes and so is probably not an issue. However they will continue to monitor it as the appendix does contain some lymphatic tissue.

More worryingly, there is a new lymphnode in Jessica's neck which is slightly enlarged that is lighting up. It is just under her left jaw and I can just about feel it although it is generally a pretty lumpy area! It is next to impossible to biopsy these lymphnodes so we have to check it ourselves and go to Oncology and Liver Transplant clinic monthly for examination.

Alongside this new development, Jessie was suddenly EBV positive again. This is the scary Ebstein Barr Virus that causes mono/glandular fever but in immunosuppressed kids is thought to trigger Post Transplant Lymphoproliferative Disease (eg. Lymphoma). Jessie had just been taken off her anti-viral medication so of course we put her straight back on and we can double the dose if the virus is still not back under control at her next labs in a month.

The newly enlarged lymphnode could be reacting to something as simple as a cold virus, or fighting the EBV, or could be a recurrence of the Hodgkins. Only time will tell. There is hardly any other indicator that can help us - nightsweats and fatigue are symptoms, although Jessie didn't have them last time, and there is one lab value the sedimentation rate that we can watch but is not always an indicator (right now it's OK).

Obviously the priority is to get the EBV exposure under control and hope the lymphnode doesn't grow. It is scary and makes me feel nauseous to think of it - there is also the element of deja-vu as we start looking into flights as we were hoping to spend sometime in England again this summer.

The kids haven't seen either grandparents for a year and their cousins not for 2 or 3 years respectively. Life goes on thankfully and we try very hard to forget our worries. Last weekend the kids had the school Walkathon which was ton of fun with Ben seeing success in getting his teacher dunked in the dunk tank! Jessie is starting a new season of soccer with the brightest neon pink/orange kit we've ever seen. This was very welcome after she'd been teal or green for three seasons in a row. The team is appropriately called Pink Lightning!

Hope you and yours are well. If we get to England it will likely be early July to mid August.

Monday, January 19, 2009 1:12 PM CST

Bizarre scan results:

So Jessie underwent a long 9hrs of scans, echoes and respiratory tests for her one year post-treatment follow-up. It was not a good day as the first IV was dodgy and, to cut a long story short, blew on her first CT which was kind of scary. Since she had by then, got down the horrid contrast drink we decided to keep going and put in another IV and get the CT done again. The PET scan results were also somewhat problematic as the radioactive contrast had not worked terribly well due to problematic first IV but after much waiting a dr pronounced the results clear enough. Poor Jess managed without eating and drinking (apart from yucky contrast drink which quite definitely does not count) from the previous evening until 5:15pm when we finally got to Krisy Kreme donuts! We were at the hospital from 7:45am-4:45pm, one of our toughest ever days.

When we got home there was a bizarre message from Jessie's wonderful Onc dr asking if she had any symptoms of appendicitis as the PET had shown it "glowing" and to come straight to the ER if she did. Jessica has been absolutely fine so we went as usual to clinic two days later to get the full results and talk properly to her drs. The scans in general looked good which is great and far from my "worst case scenario", however, and there always has to be a "but". The appenidix was clearly problematic, which would be explained if Jess develops appendicitis, or if it's inflamed for some other reason, but since it does contain some lymphatic tissue they cannot rule out a recurrence of lymphoma although it would be extremely bizarre, unusual and all those other words that we've heard before and don't offer much comfort. The upshot is that we're going to watch Jessica closely and repeat the scan in April.

This kind of news does not leave me having sleepless nights anymore (although I can't speak for Graham) but it is always in the back of your mind. It also seems so unfair for Jessica that she never quite gets an "all clear". We will live with it for now since there is nothing else we can do and I'll rally all your positive thoughts for the next scan in April.

The only other thing that I'm frustrated about is that it really puts a spanner in the works for booking tickets to fly to England again this summer. We will have to wait and see. I'm slightly sick at the thought of going back anyway as I discovered Jessie's main lymphoma lump in her neck on the first night of our trip to England two summers ago. Let's just hope it all works out somehow.

We had a wonderful Christmas holiday with Graham home. Lots of parties, daytrips, hiking and a day in San Francisco.

Jessica's liver is more or less behaving itself although her labs have still not quite settled down. She's only getting blood draws once a month which is fabulous and clinic every other month (I can't remember when we were last in that position).

I'm still only now sending out cards to people who happen to be on my second list of address labels. Once the holidays got started I just didn't get around to finishing them so they'll be New Year cards and I hope you don't mind too much if it's you!

Sunday, December 21, 2008 10:29 PM CST

Happy Holidays Everyone!

If you made it to this page, either:

1) you haven’t given up on us despite my disappointing lack of updates
2) you miraculously received our late Christmas card because you have not moved in the last few years

I am highly embarrassed and feeling much guilt about both these points and need to say that I am heartily SORRY! The first is due to having run out of energy in the early part of the year leading to an inability to get anything “extra” done, apart from immediate familial needs that is. The second is due to the computer crash referred to in my last post. Please let me know by email if you did not get a card and send me your new address and I will remedy forthwith.

On to our news . . .

The earlier part of this year was the most difficult we have probably ever gone through and that is enough said.

Things kind of settled down after my parents returned to England in as much as they ever do for us. Although not really until we finally got Jessica off steroids about a month ago. I think this took about 5 attempts of tapering her dose, some lasting just a few days which resulted in a rejection bout and hospital stay, and the final one taking several months. In order to help matters, Jessica was placed on second anti-rejection drug, you’ll remember these wonderful medications that stop her body rejecting her liver but increase your risk of lymphomas and other cancers. There has been a marked lack of hissy fits since the steroids stopped so that has made a huge difference in the quality of life for all of us! And massively reduced the amount of medications Jessica had to be on to counteract the side effects of the steroids.

On the Oncology front, Jessica has been receiving regular chest x-rays that have been clear but I do not set much store by these as they wouldn’t have detected her lymphoma in the first place (as her lumps were in her neck and upper abdomen). She has a huge day of scans in early January which I am dreading but we’ll have a good picture of what is going on when we get the results. She will need the dreaded IV at around 7am for a PET scan, pulmonary functions tests, echos, and disgusting vomit-inducing contrast drink for the CT scan later in the afternoon – quite an ordeal even by our standards. I WILL be better at posting updates for this as that is one of my New Year resolutions.

In the more important areas of her life, Jessica has returned to school with gusto. Apparently, her academics had not suffered at all by missing so much of the last school year. Her hair started growing back directly she stopped the chemo. It is darker but with lustrous post-chemo curls which Jessica intends to never have cut. Jessica played soccer through the Fall. Unsurprisingly she struggles with her fitness, but makes up in enthusiasm and Graham enjoyed coaching her team. She had her first sleepover parties this year with a High School Musical sleepover for her birthday in October which involved much karaoke-ing.

Ben is also doing well in school and has taken up the trumpet in the school band. He continues to swim 3 times a week and has an impressive technique in all his strokes. He will compete in his first swim meet this January. Ben and Jessica are obsessed with legos and will play for hours, much to my delight, which made it imperative for us to take them back to Legoland (and Seaworld) for Thanksgiving.

Graham’s parents had a long-overdue visit in the early summer. They timed it well to admire their grandchildren in the end of school performances and a weekend camping trip (where it bizarrely rained). We enjoyed the pool, lots of beach trips and a couple of local outdoor, art and science camps for the kids. In August we rented a spectacular house on a cliff on the outskirts of a village called Trinidad way up the northern coast of California. It had its own little beach, river, hot tub, mountain bikes, fussball table and pinball machines and we had a wonderful holiday.

Graham and I are picking up the pieces of our lives again. Graham took on a new role in the Legal department this summer which he is enjoying. He moans more about his soccer bruises every week and spends a lot of time in the kitchen pretending to be Gordon Ramsay. I auditioned yet again to return to my choir (I must be the most auditioned member), and continue to teach music at school and work out doing yogilates or hiking in the hills whenever I have time.

My parents are settling back to their new circumstances in England. Both are thankfully doing well although my mum’s recovery has plateaued to an extent and she is learning to cope with her limitations. Walking will never be a thoughtless activity in that my mum has to plan how far she can go and where she will be able to stop and rest. Although she has regained some more mobility in her knees and is still having therapy, little things like stiles and swimming pool ladders are massive challenges.

My parents did offer to visit for Christmas, knowing that their visits are the only time we get a real break, but I felt that they were still way off being able to cope with the plane flight let alone facing the anniversary of their accident where it happened. We miss them hugely especially at this time of year and this will be the longest we have ever gone without them seeing me and the kids.

We are hoping to visit England again next summer. The discovery of Jessica’s lump on our first night there does make the idea of this even more daunting than it already was last time, what with Jessica’s immuno-suppressed status and Ben’s food allergies. I have become quite philosophical though and try to stay calm and relaxed as much as I can. I also try to prioritize the things that are important to us as a family and put my energy and time towards those. The little things in life, like a walk in the dark with glowsticks, scootering in the gutters when it’s raining, art projects involving pom poms and googly eyes, baking fluffy bread, etc. etc.

I wish you lots of these special moments with the people you love.
Joanna (and Graham)

Sunday, May 18, 2008 10:46 PM CDT

Apologies for lack of update - still do not have my computer. Hopefully will get it back this week with reimaged hard disk. Unhappily have lost a year of photos but that will teach me to learn more about backing up properly!

Normal life has been going on finally! Jessica got her cast off at 10 weeks post ankle break. None too soon, her poor little leg was rubbed raw and still stiff and swollen for a week. Now it seems great though and she has been enjoying time playing in sand and water again. Just in time for record temperatures this past week upto 100 degrees.

We also managed a fun weekend in San Francisco with too meals out! This is no mean feat with Ben's allergies and not a little stressful. We couldn't do a weekend away without some medical crisis though - the hosp rang us as we were entering San Francisco to say that Jessica's liver numbers were up, on the day that we had finally stopped the dreaded steroids of course and she needed to go back on a higher dose directly. You'd think I'd have learned by now to never travel without any medication Jessica has ever been on but three Walgreens pharmacies and many phonecalls later we were restocked (thank goodness Walgreens keep have prescription access at all their stores even though Jessica's more unusual medications took some hunting down).

We had a great time though with multiple cable car rides, a trip to the Exploratorium, Disney store, driving up and down the twistiest and steepest San Francisco streets etc. etc.

My mum and dad are doing OK. My mum is making slow but steady progress moving from a walker to crutches and gaining some useful bend in her right knee (the left knee is a different matter!). She is having home visits from physiotherapists and the district nurse and has had rails installed down the front steps and in the bathroom. Unfortunately, it has turned out that my dad did have a broken left arm which has now not knitted properly and may need to be rebroken. He did have it x-rayed before leaving Stanford but somehow it was missed although we have requested his records. It only came to light when being back in England and doing more around the house, taking care of my mum but particularly driving and changing gears with that arm. This accident seems to have had endless repercussions.

I am trying to give Jessica a hospital free last few weeks of school as much as possible. The kids finish school in the second week of June and Graham's parents will come out for a long overdue visit. We are trying to taper Jessica's steroids again, and really hope we'll have a period of calm tempers and let her face go down to it's non-steroid-ballooned shape.

Thanks for your concerned emails. Looking forward to catching up with YOUR news when I get my computer back.
Take care.

Sunday, April 6, 2008 6:27 PM CDT

Anne & David have safely arrived back in the UK! As far as I have heard, the flight was as good as it could be and the journey up to Cumbria uncomfortable but at least quickish.

Anne is settled at Lancaster Infirmary for a few days. Tough for her when she so badly wants to be at home but the best way to get her assessed by social services and activate the support she will need. Netta was able to meet Anne and David there on Saturday night and get David settled at home on Sunday. She will pop up to Cumbria during the week as often as she is able and hopefully help get Anna settled at home soon.

Life here seems a little odd to me but it has been nice to concentrate on the kids more. Jessica had an overnight at San Francisco zoo with Graham which sounded fantastic (Ben did this a few weekends ago) and Ben had some precious spoiled-by-mummy time.

Jessica has been having a tough time on her steroids although we're starting to taper them. Major mood swings and hissy fits most mornings and after school. Friday a week ago was so bad that I had to take her to school 30 minutes late, as she had been screaming so long that she hadn't had breakfast, medicines, brushed teeth or anything when it was time to leave for school! I loved the school secretary, when I said that we hadn't had an apt it was just a tough morning, for giving Jess her late slip and telling her how pleased she was that Jessie had made it to school (it was just the support we needed that day!).

This week Graham is away Mon through Wed. We have:

Tue pm - review of Jessica's scans with Oncology drs
Wed am - x-rays of Jessica's ankle and poss cast off!
Thur pm - transplant clinic and labs

Following week is Spring Break. I will not update until after then when hopefully I will finally have my computer back up and running. So sorry I can't email anyone personally in the meantime but have super appreciated messages of support from my very good friends in England - they have kept me going (thanks esp Judith, Kirsten, Sally, Erica, Bella & Richard and others who I get messages through Graham or here).

Thursday, April 3, 2008 0:40 AM CDT

Anne and David v happy to be flying home Friday evening. Medical team (2 nurses) to accompany Anne are arriving tomorrow and we're all busy sorting out arrangements.

Plastic Surgery apt went well on Monday although graft site does not look totally as it should. Anne still has legs elevated all the time and is only lowering approximately 4 times a day for under 3 minutes at a time.

Flight and transfers will be quite an ordeal but we feel Anne is at least now able to cope which was not the case a few weeks ago. Anne will stay in a hospital for a few days (location yet to be determined, I will update as soon as I know) before going home. Netta will help out on arrival (with shopping and settling Anne and David) and then a very close friend of Anne's will fly from Switzerland to stay with Anne and David until they are able to manage alone.

Offers to drive David to visit Anne would be sincerely appreciated if anyone is able, especially in the first week while he is still jet lagged (pls do not call before 10am for same reason). If Anne is longer in hosp she would also appreciate visits when David is not there, pls coordinate with David first.

Once Anne is home, short visits from friends would be fantastic (poor Anne has been stuck in rehab or hosp rooms for a full 3 mos now!). Pls also call if you are able to help with shopping after the first week (Anne will not be able to leave the house for many weeks and David will need to be with her).

Thanks for all offers of support and practical help which I think my parents will need for an extended period. I wish I could fly back with them and continue caring for them - it will be very strange to go from such an intense situation to having them so far away. However, I know they are desperate to get home and start putting this horrible experience behind them.

Tuesday, March 25, 2008 11:49 PM CDT

LATEST UPDATE (Thur, March 27)
Preliminary review of scans shows "no evidence of disease". I am one happy mum! Liver transplant clinic today, good labs and perfect prograf level so can start to taper steroids. Trying to get meds down asap to prevent reactivation of EBV (Epstein Barr Virus) which likely triggered lymphoma. Scans will continue 3 monthly for now.

Round up of latest events:

Took Jessie's second cast off last Tues, ankle still painful and swollen, so new cast on for another 3 weeks!! This includes Easter, school Walkathon and overnight at San Francisco Zoo. Jess walking on it well now, so hoping it will resolve nicely. I am just going in to school at lunch now (not recess as well).

Anne was discharged to rehab center on Wed (could have been Tues, days merge!) and was doing well with medical team ready to fly out tomorrow with a view to getting my parents back to UK on Friday. Follow-up plastic surgery apt today hit us with a bombshell that the graft site is not looking good. We are all devastated, this is a nightmare on many fronts now. Plastic surgery team will review next Monday.

Anne is hanging in there mentally, although her limited movement is so tough on her. She can only lower her left leg for 3 minutes, three times a day with tiny increases week by week. This especially hit home as she returned to rehab centre where she had been learning to walk but is now back to being largely bedridden with short times in wheelchair with legs elevated. Thanks so much to those of you who are writing regularly, Anne appreciates your cards/letters so much.

Today was also Jessica's PET/CT scan day. Graham came to the hosp to help out with the dreaded IV and contrast drink. This is actually two completely separate scans, one with radioactive contrast at Stanford, the other with oral contrast at the children's hosp. It was an early start and a 5 hr hosp session but Jessica did great and was richly rewarded with gifts from various sources (thanks so much Alison P, Tony & Alison, Traci and family, Judith - hope Bertie's arm is all better). Results on Apr 8, long time to wait and G out of town those days, but keep all fingers and toes crossed for us pls.

It is unbelievable how my mum's apts and Jessica's apts always clash like today. This will also happen on Mon as Jess has a radiation therapy apt right after my mum's plastic surgery review. Jessie's liver numbers are still looking good but we're struggling to get her prograf at a high enough stable level but not too high. Therefore she's being kept on a high dose of prednisone steroids and we're certainly aware of it with major mood swings, shaking and ravenous appetite!

We arranged for special wheelchair transportation to bring my mum home (for the first time since the accident at the beginning of the year) for a couple of hours on Easter. The weather was stunning, the kids were gorgeous and it was a very special day. I hope you had one just as great.

Sunday, March 16, 2008 11:47 PM CDT

N.B. My computer is still broken (and prob lost a ton of photos, am not happy about that either, timing terrible!). My dad and I have v limited access to Graham's computer hence no replies to emails - although we'll try this weekend if we stay hosp free.

Well we persuaded the drs to let us home yesterday, the plan had been to stay in over the weekend and review on Monday. It was definitely an issue of quality of life. Jessica's liver numbers are still going down in the right direction, I haven't really dared ask if there's any longterm liver damage yet. We promised to go for labs again tonight which will be reviewed tomorrow and we'll go into clinic in the afternoon if necessary.

Jessica has been feeling perfectly fine through all this so it's kind of weird for her. It's the usual scenario of her looking great, full of energy but all this horrible stuff going on inside her. I'm glad of course that we don't have to watch her going downhill but she still suffers with the multiple pokes for blood draws and IV and stuff. Coming back home is like when you're watching the Wizard of Oz and it changes to technicolour - it's overwhelming (I try to remember to be grateful for every ordinary day at home and not to take it for granted).

Jessica is back on 14 medications which I'm still trying to get my head around. She's tapering the steroids for the next few weeks and taking all the stuff that deals with the side effects of those. She's back on actigall to help her liver recover. She's also back on a high dose of Prograf, the anti-rejection medication that helped contribute to her lymphoma.

Of course this makes me feel quite sick with worry but the drs rationalized it as dealing with one problem at a time. Now is the time to do everything to save her donor liver and once it is happy again we can rethink everything else.

It is difficult to also worry about my mum in this situation but I know she's doing OK. She is entering her third week in hospital which is horribly tough but I hope she will be discharged back to the rehab center sometime this week and possibly fly home the following week. She has not been able to weightbear on her left leg again since the second surgery so as not to disturb the skin graft but that seems to be taking well which is fantastic. Tomorrow will be the 11th week since the accident.

It will be strange to walk into school tomorrow as if everything is normal when it isn't. I look at myself in the mirror and am shocked that I still look the same (aside from varying shadows under my eyes depending on amount of sleep/driving done that day and many more grey hairs). Even Ben said tonight that everything seems different since we came back from the hospital. I answered his questions and tried to reassure him and explained that we're just once again getting used to a new normal. Previously, coming home has felt like a new beginning, a new regime to get to grips with, but now I just feel sick with dread over where this will lead to.

I'm still feeling strong though, almost invincible really, isn't that odd. One day at a time is the only way to go.

Thanks for reading and let me know if you have read. Then I'll know you know what's behind my smile and my "fine thanks!".

Friday, March 14, 2008 3:49 PM CDT

Biopsy results showed Jess has acute portal rejection. Contrary to how this sounds, this is better than chronic rejection, the only cure to which is a new liver.

Jess has had two rounds of IV steroids and her liver numbers are starting to come down. I expect she will get another round tonight and if her numbers are still improving tomorrow, she'll be allowed home and to taper on oral steroids.

Jessie was perfect following the biopsy when she had to lie still in recovery for 4hrs and another 2 in the room and it all went smoothly (there is a risk of internal bleeding with these). Oklahoma, Pippi Longstocking and Dora got us through this time.

We've been playing musical rooms, with a room change at 1am last night which Jessica thankfully slept through but we're both exhausted and Jessica is steroided out! She has been attending hospital school though (you may check me in one hr!). So the stay has been quite bearable.

The Liver Transplant drs are meeting right now to discuss what anti-rejection drugs to put Jessica on. I got quite upset after talking to the team about that this morning because there's no risk-free solution. It's just such a step back to a bad place and I'm terrified to think what her future holds. Jessie's also going back on actigall and a reem of other medications so our little holiday is over and Jessica will be once again hugely immunosuppressed (waiting to see if we have to go back to the whole fasting deal or not).

Anne doing fine. Took Jess to visit her yesterday. David has been in both days. Graham on business trip so grandpa taking care of Ben alone at home. Crazy days but friends are being wonderful with driving visitors to and fro (thanks from the bottom of my heart to those of you who have jumped to do this for us). Graham back tomorrow, thank goodness.

Monday, March 10, 2008 11:04 PM CDT

Anne's plastic surgery went well today. She had a portion of her medial calf muscle pulled around to the front to plug the wound in her shin (and cover the tibia and plate). This was then covered with a skin graft from her thigh.

Anne has a splint to hold her foot upright and still, and the leg is covered in bandages and the wound vac, again, to promote healing. She will stay in hospital for the next few days until they know for sure that the skin graft has taken hold. Anne will not be able to continue her work on learning how to walk for a week or so and must be careful not to let the leg swell or stretch the skin which could put the graft in jeopardy.

Jessie's liver numbers which have been somewhat high all year have jumped into the too high realm today. Her transplant coordinator is trying to arrange a biopsy for this week which will confirm whether it is rejection or not. This involves the dreaded IV, full anesthesia and lying still on her side for several hours after to help prevent internal bleeding.

If it is rejection, Jessie will have to go back on the anti-rejection medication, Prograf, that probably caused her Hodgkins lymphoma. They will try to use a low dose in combination with another drug to get the rejection under control. Graham and I are extremely upset about this and I know you will all share our feelings.

We'll keep you posted.

Thursday, March 6, 2008 0:31 AM CST

Not enough minutes in day to post and also my computer has died so need to beg for time on Graham's - v quick update.

Jessica doing OK with broken ankle and stated to walk on cast some of the time. Has perfected the art of wheelchair tag and hide and seek. Friends clamoring to have chance to push her. Enjoyed 3 birthday parties, Fri, Sun, Tue but novelty of cast quickly wearing off.

Anne is another story with a huge upset at her last apt with orthopedics before preparing for repatriation last Fri. The wound on her left leg, which has had problems healing and an infection, needed urgent surgery to remove dead tissue. This was scheduled for this past Mon and we had an extremely stressful weekend and Mon waiting for surgery to get approval from the insurance. It was supposed to be outpatient with an overnight stay but Anne has now been admitted (pls no more mail to Cedar Crest, send to home address instead, email if you need).

It turned out that the removal of tissue exposed the tibia and plates that have been put in. Anne now has a wound vac on the site which will need to stay on for some time. What happens next should be decided by the end of the week! Orthopedics would like to put on a portable wound vac and possibly get Anne and David back to the UK sooner rather than later for follow-up. Plastic surgery feel that it is urgent to do further surgery to fix the problem and close up the wound on Monday afternoon. Big risk is infection of course and losing all the hardware that has already been put in. Watch this space.

Anne is now weightbearing and learning to walk with a walker but only in the care of a physiotherapist (twice a day). She still needs help to get to standing and is mostly bedbound with the wound vac. She is still being incredibly patient and is resigned to just coping day by day for a few weeks.

The uncertainty and stress is getting quite exhausting for everyone. We all feel the set back of being back at Stanford hospital but know that it is important for Anne's care. I am driving up 3+ times a day in order to make sure that Anne has plenty of visits in between supervising Jessica at recess and lunch. We are also handling coordinating with the doctors and insurance which is a huge undertaking and unbelievably stressful.

Hopefully everything will work itself out in time. Thanks for cheery messages.

Saturday, February 16, 2008 0:52 AM CST

Not the best of weeks:

A friend kindly drove to Watsonville to collect my parents belongings from the rental car only to find that it had been towed by the rental company on Jan 24! The California Highway Patrol did not think to let us know that they had decided to break the 60 day impoundment. Even worse, the towing company who were holding the car previously were so unaware of not having the car there anymore that they let me make arrangements to go visit it!

When I did track down the car, late last Fri, and picked up the belongings, in 2 black bin bags. They had seen fit to pack the clothes and jackets with a bag of moldy 6 week old apples and a broken bottle of red wine complete with glass chippings. Suffice to say that many phonecalls later, I have had words.

On Sat I sent Graham to Urgent Care with a split big toe and ripped off nail due to a kick directly into another player's boot stud. The school nurse works there at the weekends said she was hoping not to see any more of the Allan family in these situations.

My mum is OK but struggling with the pain of getting her knee joints bending the required number of degrees. Also, dealing with urinary tract infections and other little things that seem huge in her situation.

There are now 8 cases of chickenpox at school including a kid in Ben's class. Ben has now definitely been exposed, although he has had the vaccination and booster, so have several of the other children so I'm being extremely vigilant. Jessica has remained out of school.

Finally, we have just got back from 4 hours at Urgent Care with Jessica. She has broken her ankle slightly. Yes, you read correctly and yes I feel sick about it. I am entirely to blame as it was a trampoline accident and the kids had two balls with them. Having been super-supervisory since the trampoline arrived, today I let go for no good reason, apart from the fact that other people seem to get away with it. I was trying to get Jessica's lab results on the phone whilst watching them through the kitchen window, when she screamed and I knew it was a break.

As it is a Friday night and Monday is President's Day, we won't see an orthopedic dr until later in the week so have no idea where we go from here. It is winter break this week so we were looking forward to lots of fun playing in the parks with friends. I'll have to come up with some wheelchair-friendly activities instead, once I've organised where to rent one.

Not a good week all in all but thanks for reading. Please try to refrain from saying it can only get better as it's only tempting fate!

Wednesday, February 6, 2008 10:59 PM CST

Apologies for delay in posting. There are just not enough minutes in the day.

Well, we got through our crazy Friday. Not quite as planned, in that the plastic surgery doctor did not make it over to see my mum, even though I had been assured it was all set up (and had spent possibly HOURS on the phone partly on hold and partly begging various medical assistants to persuade the doctor to step across the road to orthopedics rather than us getting my mum into the ambulance and driving around to the building behind and having the palaver of getting her into a waiting room and find a space for her to wait in the gurney/stretcher)!

However, it was a good visit in that the infection in my Anne’s leg has resolved and the orthopedic doctor thinks it may be alright without any reconstructive surgery. Anne had an hours worth of x-rays first which required some interesting problem solving in order to get, with her very limited movement. Including her being spun on a mat on the table so that her head swapped ends with her legs which was a bit hair-raising. We were all hoping for some miraculous, “oh your bones have healed so well you get weight bear immediately”, but of course it was, “you’re doing fine and will be able to weight bear at 8 weeks”. We knew this really but you can’t help hoping, so we should just be happy that everything’s on track. Hard for Anne though to go another 4 weeks in rehab, so limited in what she can do, she can’t wait for Feb 25.

Jessica has her final Radiation Therapy tomorrow – HURRAY! She’s done fine, although did have a tough time with her first poke for a bloodtest in months last Thurs. It’s going to be happening at least once a week though so the sooner she gets used to it again the better. We did make up by going to Krispy Kremes who thankfully had their valentine’s doughnuts in production, heart-shaped with pink and red sprinkles, can you imagine anything more perfect. Jessica doesn’t actually really like them much and gives up after a few bites but she does love watching the production line, especially the icing/frosting curtain, so it’s worth it.

Last week Jessica was back in school all of 2 days before starting up a cold and I kept her home. This turned out to be a blessing because at the end of the week and the start of this, there were 5 cases of chickenpox at school. This is unusual because most children have been vaccinated but not all have had a booster so they’re still getting mild cases. I felt so bad telling her we had to keep her home for a couple more weeks when I had been promising her things were getting back to normal. Sometimes I really feel like things are stacked against us, why did the chickenpox outbreak have to happen now instead of some other time in the last 3-4 months that she has missed school? But really, I’m just happy if neither kid gets it. It was reassuring to have doctors at oncology, radiation therapy and liver transplant all back us up by advising us to keep Jessica out of school as often they say to just get on with life.

Jessica’s labs were somewhat improved with the ALT lower but the AST higher, so I’m happy enough for now. Ben also developed a cold so I had them both home at the start of this week which was nice as they weren’t really sick and we had a fun time kite-flying and stuff.

Anne is managing longer times in the wheelchair and even starting to hop a few feet with a frame. The difficulty is that she still easily faints and still needs either one super strong physical therapist or two PTs minimum to support her. Her right leg can weight-bear but is in an immobilizer so can’t bend, her left leg can bend but must not take weight – so getting up and down from a bed or chair is impossible without a lot of help. She is able to wheel herself a short way in the wheelchair and uses a commode once during the middle part of the day when the physical therapists are there to help move her but largely she is still stuck in bed or the wheelchair. We are very proud of all the hard work and determination Anne has to improve though. She is incredibly tough.

I’m hoping to get over to Watsonville on Monday to where the rental car that my parents were driving is impounded and pick up the rest of their belongings. It’s an hours drive each way, over a windy mountainous road that is notorious for accidents. The car still has all their jackets, some clothes, shoes and my dad’s wallet with driving license etc. so it’s important to get there. Huge stress with my parent’s insurance just now is an understatement. Thankfully Graham taking brunt but still affecting all of us – why does that have to be so hard on top of everything else?!? – can’t say much more.

Thanks for all the birthday cards and wishes they were really appreciated by both of us. I intend to have a very big night out sometime in the future which my friends are very ready to help with. My mum did well through the day with us making a little but not enormous fuss. She is finding all your encouraging words in your letters and cards so helpful - thank you so much for taking the time to write to her.

Jessie had a ball at her sweetheart dance on Sat, which we will continue to hear about until the next one, but Graham got a right ticking off for all his “silly dancing”!

Monday, January 28, 2008 0:08 AM CST

This past week has been difficult and full of bitty problems but as I sit here on Sunday night we are once again in a good place. Another long post . . .

Last weekend was very tough for my mum. She had a bad set back in that there is only one physical therapist at the centre on Sat (she needs two to get into the wheelchair) and so she didn’t get up at all on Sat or Sun. Come Monday, Anne was back to fainting the minute she was upright and not able to get up to standing at all. Then on Tuesday night it became apparent that she had an infection starting in her left leg. This would normally be a “straight to ER” thing, but her doctor offered to see her in clinic if we could wait, and wait we did, but it was the only thing to do.

Following Jessica’s radiation set up on Wed morning, I dropped her home with Grandpa, and went straight to the rehab centre to travel with Anne by stretcher/gurney in an ambulance back to Stanford. After 2 or so hours wait and some discussion about whether to admit Anne for IV antibiotics, they decided to let her go back to the rehab centre on oral antibiotics which turned out to be a good call. There is some concern that under the dead skin on her left leg, where the infection is, there may not be much tissue/skin so she has now been referred to plastic surgery to have this looked into!

Jessica had another radiation set up on Thurs which she coped really well with. My anxiety left when I realized that she was OK with the mask and being pinned down to the table, and would cope with me being out of the room as long as I talk to her over the radio and talk her through the session, such as when the machine is going to move. Both set ups were lengthy in order to make sure she is positioned perfectly. A team of three technicians simultaneously line up various crosses all over her abdomen and on her molds with beams of green/red light from the walls to make sure she is in the exact same position each day. I particularly hate the massive metal door which seals automatically like a vault each time we leave the room but I have managed to avoid the tears so far each time we are sealed out and away from her.

On Thursday Jessica had blood work which cleared her for the first real radiation therapy on Friday. One of her liver numbers (ALT) is slowly creeping upwards, not at a concerning level yet, but it will be this week or next if the trend continues – I am trying not to worry about this until I have to. We also got Jessica’s PICC line pulled!! We thought we’d arranged it for this week with Vascular Access as we didn’t realize the Oncology nurses are trained to do it, but it was great to have it done then so Jess didn’t have to worry about it for a whole week. It was OK apart from getting the stitches out which hurt Jessie a lot but she is so happy to be free of it, and I am happy not to flush it or be called to check it in the night when “it doesn’t feel right”! This week bloodwork will be a poke again though, not sure how Jessie will be about this after all these months.

Come Friday, her first radiation was a non-event really but we are one RT down, hurray! We were in and out within 15 minutes. I talked Jessica through the fact that this would be the same as the set up apts in that she still wouldn’t feel anything and that even x-rays are radiation. She did so well although she was extremely tired that night. Her apts are 8:45am which means getting both kids up a little early, being very organized, and dropping Ben at school at exactly 8:15am. Mornings aren’t my thing at the best of times but I will make it work for two weeks. The only care thing we have to do is put lotion on the two sites as the radiation has the same effect as sunburning Jessie’s skin. This is only made difficult by the fact that we have to avoid all the artwork on her tummy (she’s also having very tiny baths still for this reason). Jessica is very happy to show everyone her tummy and says she should be in a “museum of art”! She was not remotely impressed by Grandma’s few pen lines still on her leg.

I did the same whizzing back home to travel back up to Stanford in the ambulance with my mum later Friday morning. The doctors wanted to check that the infection was under control. It was a 2.5hr wait again, but still better than ER, so we’re not complaining. I just feel badly for Anne who is on a horribly uncomfortable stretcher all that time and makes sure she won’t need the bedpan all that time, and the hour on each side traveling to and from! We also got a referral to Dermatology as Anne has had terribly sore and blistered lips for several weeks now. She was given and antibiotic cream when she was inpatient at the hospital which hasn’t helped at all. Anne doesn’t complain at all and quite frankly I’ve been so run off my feet this just wasn’t a priority but I’m happy we’re finally getting around to getting this taken care of too.

With all these appointments there was little time for physiotherapy. However, Anne did get over her fainting and into the wheelchair most days. Also at the end of the week she managed to stand for a few seconds three times in a row, with help of course. The rehab centre are being fantastic by making sure that the Saturday physio has more help to get Anne into the wheelchair on the weekend too. We visit very regularly still, I go every night and usually once in the day, I drive David in usually to have lunch with Anne and Graham also sees her at least every weekend. She still doesn’t want stuff to do as she’s too busy with her exercises! Anne has my ipod and a discman, tries to fit in some reading but has only just finished one book, she has not watched TV once!

Tomorrow will be 4 weeks since the accident – how far Anne and David have come. There is still a lot to sort out with insurances, bills and some of their belongings which are still in the car that is impounded. We will get to these things as we have time. Jessica will be going to school at break/recess each day through radiation, if she is up to it. She has been out of school so long now, it’s a huge deal and I will miss her so much (although not the homeschooling) but it will help give me some extra time.

This week:
Radiation every day at 8:45am – with Jessica
Fri (crazy day) – ambulance with Anne at 6:45am, x-rays at 7:45am, orthopedics at 8:45am, plastic surgery at 10am (poss transfer to another building for this AARGH with stretcher/gurney and everything) and maybe also dermatology! I will do a swap with Graham at some point so that he looks after my mum while I do Jessica’s radiation (no need to traumatize Graham with that for a one-off, when I have been gently inducted and had a chance to get used to the weirdness of it).

Thanks again so much for all the thoughtful and caring cards for my parents – they are truly appreciated. Hope you enjoy the new photos.

Sunday, January 20, 2008 10:13 PM CST

Finally an update on the past week. Sorry it's a loong one (now writing about 3 people). It’s hard to find free time to get on the computer especially as I always visit my mum again in the evening and help get her ready for “bed” (sounds odd as she’s in it anyway!). Thanks for all kind messages as more people hear about what’s happened, pls do not deliver meals, although we appreciate the thought, Ben our 8yr old has food allergies and we’re very careful to keep him safe at home.

Jessica’s radiation therapy set up on Monday was not great. The technician who took molds of her body and did her face mask and CT scans was very rushed so that even I didn’t know what was coming next. Looking back I think she was anxious that Jessica was going to lose it and freak out but in fact if things had been taken slower it would have all gone a lot better. I could say a lot more at this point about how some people would be traumatized for life after they rammed the mask on Jessica’s face, pinned her to the table, and left it there for 10 mins to dry whilst taking the CT scans (which of course I could not stay in the room with Jessica for) and she could not talk or move a muscle. But, Jessica said it was OK after the event although it did pinch her nose quite badly - she is really remarkable.

I am still stressing whether we got her in the right position and about how much more gently and appropriately the whole thing could have been handled. Especially as she is supposed to have her chin high up so the radiation “beam” can hit the neck without going through her jaw first. I have been mildly reassured that we are going in for positioning checks on Wed and Thur this week and we may have to repeat the process. Having not explained much of the mold or mask process to Jessica, the technician did show her the needle she intended to make the tattoos with at which point Jessica completely freaked out and refused point blank. We could have probably got away with her not even noticing as she was drawing all over Jessica’s tummy and I had popped lidocaine cream on the spots. Now instead, we have stickers marking the spots! We have already lost one and I am faithfully drawing the crosses back in every other day so we don’t completely lose them.

I am DREADING radiation therapy and it is obsessing my life right now even with everything else going on. I keep trying to tell myself that it will give us the best chance of killing off the lymphoma and that it is a tiny dose. BUT just as the anti-rejection drugs can lead to cancers and other scary health issues in the future, so can radiation therapy. What more will Jessica have to put up with and how will this therapy, that I have to take her to for 10 days, affect her future life? – I feel sick at the thought – so pls understand that we are not celebrating any upcoming birthdays, of which we have two in the family, until everyone is home and over the worst of their treatments.

Now to move on to better things, David is still doing great at home. Walking further each day. Eating normally, corresponding with friends on the computer and starting to help out with little things at home. Anne had a good and busy week with her physiotherapy. She has now stood up 3 times, almost for a minute, and has built up to sitting in the wheelchair for about 2 hours. She uses special machine (CPM) that lifts her left leg and bends it to around 50 degrees for 4-5 hours a day and does all her other exercises religiously.

Anne had a great appointment with the orthopedic attending dr (consultant) on Fri. We were there almost 3 hrs. Anne had all her staples out, had the immobilizer removed from her left leg and a new (fresh and clean!) immobilizer put on her right leg which I have learnt how to remove and adjust. The dr showed me how to help her with a very slight bending motion on her right knee to keep some movement there. He also said that she could begin to try using her right arm a little, which will help hugely with transfers into the wheelchair and standing, which she still has at least two people for and is lifted the last bit. There is some concern over a largish area of basically dead skin on her left leg which we need to watch and they hope to remove at her next apt in two weeks. The appointment gave Anna a much needed confidence boost and lots of new things to work on.

Yesterday, we had a day at the beach which had been planned for New Year’s Day. Thanks a million to Alison for driving my dad to the rehab on a weekend so we could go. Many friends have helped out with shopping and driving my dad for visits this week. Thanks to you all so much, Anna, Amy, Audrey, Carol, Julie, Elizabeth, Nic, Kim (and sorry if I’ve forgotten anyone). I don’t know what I’d do without you all right there for us.

Jessica was given a lovely blanket by her class last week which we will take to radiation therapy. It is pink and red with purple hearts which each child decorated with their name. More news, Jessica’s hair is already growing back, we think it is approximately as long as an eyelash (she still has some hair, very thin but longish, which we’ll have to chop off as the new grows in). She lost her second tooth today, swallowed it by accident with some crusty ciabatta at lunch! I am highly relieved as I wouldn’t want it floating around her mouth when she is immobilized with that mask for her to choke on. We are also considering having her PICC line pulled soon because it has performed it’s job faithfully for multiple blood draws and chemo but is a big infection risk. Jessica will have to get used to pokes again but will also be able to have regular baths which will be great (also no more flushing lines, changing caps, dressing changes, ordering supplies etc.).

For those of you worrying about me and Ben. I did get to Yogilates twice this week, and the gym today. We also had fun park afternoons with loads of friends on Tues and Fri! Thank you for your supportive messages, the cheerful cards for Anne and David and all the offers of help. We are very lucky to have such good and caring friends.

Week ahead (all Jess):
Mon - holiday (catch up with mounds of laundry!)
Tue - free!!
Wed - 9:30am radiation therapy (x-rays and other stuff)
Thu - bloodwork, dressing change and radiation therapy again
Fri - poss start radiation therapy depending on blood results, otherwise Mon

Saturday, January 12, 2008 11:59 PM CST

This weekend it has been wonderful to finally be able to catch up at home and take a deep breath.

Anne is settled in the rehabilitation centre. It is not easy for her but we see improvements every day. She has sat in a wheelchair again for almost 30mins one time but she is exhausted a lot of the time. We are visiting mostly 3 times a day and it is wonderful to be able to get there within 10 minutes.

The trauma team thoughtfully scheduled a CT scan for David on Thursday night, around all our other committments and when Graham could be home with the kids. On Friday we went back and they confirmed that David's op was successful and his catheter could be removed. David is happy to be so nearly back to normal. His appetite is improving and he is able to go on short walks.

Jessica had bloodwork and her dressing change at the same time as David's apt. She is now neutropenic again as expected but her liver numbers continue to be stable so I am thankful.

I think this Jan 2008, I will be at Stanford practically every day excepting the weekends and two days this week! This week we have the following apts:

Mon - Jessica's radiation therapy set up day. She will have a mold made of her torso, real tattos on the two sites where the radiation will be directed, PET/CT scans and meet the new team of doctors (we will be there at least 4 hrs)

Thur - Jessica blood work and oncology clinic

Fri - Anne orthopedics clinic. Anne will still need to travel by gurney/stretcher in an ambulance but this time I will be able to travel with her. We have lots of questions for the team!

The following week I have to schedule a trauma clinic apt for both Anne and David. Then Wed Jan 23, Jessica has x-rays prior to starting two weeks of radiation therapy on Thu 24. We will go in every day except for the weekend. I hope to find out more on what to expect at our apt this Mon.

Thanks for all the lovely cards for Anne and David, they are much appreciated.

Tuesday, January 8, 2008 10:30 PM CST

I have updated with the address of Anne's rehabilitation centre at the bottom of this page as many of you have asked for it. If you are able please send a card or short letter to her over the next couple of weeks as it is really helpful for her to know how many people are thinking of her. She is finding phonecalls very tiring just now. Thanks so much.

Where to start . . .

Huge thanks for all the lovely messages and offers of help, I feel like there is an army of support behind us. I'm still on survival mode and haven't got organised yet to coordinate shopping and stuff but I will soon. My dad and I have been printing out your messages on here and email to take in to my mum which she appreciates.

Firstly, my dad came home on Sat following an extra x-ray on his arm to check for a possible fracture. Turned out just to be severe bruising (also on the soles of his feet) which is just coming out now. My mum also has masssive bruising especially where her seatbelt was imprinted, obviously saving her life.

David still has his catheter for another week until a CT to check the success of his op. Tomorrow he is getting his staples taken out of the incision. He is walking about well and starting to stand and sit without help. It was great to get him home at the weekend and help him back to some normalcy.

My mum finally has her blood stable and her heart arhythmia controlled with medication. Yesterday there was some concern about her liver, which was slightly nicked during the accident, and she had an ultrasound to check for a laceration but it was fine and her elevated lab values are probably due to one of the previous medications, thank goodness. She is being discharged tomorrow to a local rehabilitation centre.

I would love for nothing more than my mum to come home right now but she and I have realized that she needs specialist help right now and it would be almost impossible for me to care for her properly even with a nurse's help. We are lucky that a local rehabilitation centre is managed by the mum of one of Ben's friends at school. The family thoughtfully mentioned this to me yesterday and we are so grateful for their timely intervention. A wonderful break which we needed.

Anne is completely non-weightbearing on her lefthand side right now, including her arm (but will be able to toe touch in a month or two). She may bend her broken left knee but not her broken right knee. All of which makes movement painful, difficult and complicated. She started physiotherapy on Thursday barely being able to slide her foot from left to right with the help of a hand strap and has already progressed to sitting for a short minute in a wheelchair today (with the aid of two physios).

As she continues with physio over the next few weeks the aim will be to have her be able to move with minimum help from bed to wheelchair or commode before she comes home. I think at this stage we're looking at 8 weeks before she can try walking with a frame but Anne organises her time religiously around her exercises, only resting when she is tired out, as those of you who know her can imagine.

She is determined to complete each new goal and build up her strength. She has a trapeze over her bed to pull up her upper body with her right arm, she can now roll over onto her side for a few seconds for a quick wash or bed change, and she is able is swivel her hips slightly. Both legs are in immobilisers, with straps so that they can be removed for dressing changes, but she uses a special machine that lifts and bends her left leg somewhat further each day to increase mobility in that knee. Anne is on little medication now, blood thinning injections to prevent clots and pain killers which she only takes when she is getting ready for physio. She continues to handle her pain and limited movement in an incredible manner.

I have been visiting twice a day, staying around 6-8 hours until today. It is nice now not to have to run the corridors between parents (the drive is luckily just 30 mins each way). Mama and Papa were never allowed to share a room as there is a risk of confusing medications when people have the same last name. However, David visited Anne by wheelchair for the first time on Thurs night and again on Sat when he left hospital, and then on Monday evening from home with me.

Both parents have been dealing with the trauma and memories of the crash. Anne had a tough night on Sunday when a helicopter went overhead and David has been incredible about getting back in a car and adjusting to being back at home. Ben and Jessica have also been very tolerant of Mummy being away every bedtime for a week and only around for a few hours in the afternoon. Jessica's Friday chemo fever broke around 11pm having made it over 102, but since she was not neutropenic we made the call not to go into ER which was luckily OK this time. It has been difficult to explain to the kids that, yet again, it is unusual for so much bad luck to fall on one family. They can't wait to see Grandma again and we're all looking forward to working in small steps to get back to normal. We're also all very thankful that that's a real possibility for us.

Please do not phone from overseas at the moment, Anne especially finds it very tiring and we are too busy at home also making hospital apts for everyone! My parents will really appreciate letters and cards over the next few months as they miss their friends and home. Please email me for our home address or rehab centre address, my email address is at the bottom of this page.

Here is a link to another news article from the accident that a friend sent me:
http://www.santacruzsentinel.com/story.php?sid=64343&storySection=Local&fromSearch=true&searchTerms=car accidents

Friday, January 4, 2008 11:06 PM CST

Just a quick note to let you all know that my parents were in a terrible car crash, New Year's Eve afternoon. They were on highway 1 north driving back to our house following a short break of 3 nights away in Pacific Grove. A car heading south was swerving and crossed the centre of the road and hit them head on in their lane. The car spun off the road and the lady driver was killed, we don't have a copy of the CHP report yet.

http://www.examiner.com/Subject-Abigayle_Oneill_Fenn.html

My parents were separately helicoptered to Stanford ER and in CT scans when I arrived at 4:30pm. My mother was particularly critical but both were able to talk and had minor internal bleeding and head injuries. Both went into surgery later that night. My dad for a perforated bladder (3 hrs), my mum for multiple fractures (6 hrs). Both were in ICU but have moved down to monitored floors since.

My dad is starting to walk and should have a smooth recovery (he is possibly coming home tomorrow). My mother, who was driving, has fractures all down her left hand side, collar bone, ribs, thigh, kneee and her shin was completely crushed, her right knee was also fractured. She has multiple pins and plates and is being incredible about the pain she must be in. She will be in a wheelchair for at least a month and probably take many more months to walk properly (the doctors' guesstimates range from 6months to 2 years!). She had at least 9 units of blood during the op and and a couple more since including today, she is still having heart and blood issues that need to be resolved.

I am extremely thankful that their problems are fixable and they are both alive. I am hoping that I will be able to manage their care at home with help when Jessica or they have apts. Not sure quite how all this will work as still taking one day at time.

Jessie had last chemo today, is currently battling with a fever which I hope is related to that. If not will have to call hosp and poss visit to ER, not what we need right now.

Please send thoughts and prayers for a full and speedy recovery for my parents who just did not deserve to have something like this happen to them; and for nothing else to happen to us just now.

Tuesday, December 18, 2007 0:26 AM CST

This post is a kind of quick but long overview of the year for everyone checking in on us over the holidays. If you want the full version, feel free to trog through my journal history (link at end). There is also a quick update of the past couple of weeks at the end for all you regular readers.

You’ll have to forgive the bias of our news given that events in the later part of the year eclipsed everything that happened beforehand to the extent that I can’t even remember what we did. We did have a great holiday in February in Yosemite which features on our Christmas card. There were a huge snowfalls while we were there and we had lots of fun building a snow house. Ben continued to do well with his skiing. Jessica struggled with altitude sickness for the first time and also still the problem of learning how to stop!

We decided to take the brave step of finally going back to England for the summer. I have not been on an airplane since the one that brought me here 7 years ago. Ben was only 1 when we left and can’t remember a thing, and Jessie was of course born here, so it was well and truly overdue. Having planned how to deal with Ben’s food allergies on the plane and organized Jessica’s medications everything went smoothly until we arrived in the UK. On the first night in England I noticed a medium lump in Jessica’s neck that did not go away.

We had various visits to local doctors and hospitals, and calls to Jessica’s team in the States to try to get to the bottom of this but the general feeling was that it was just a reactive lymph node and could wait until our return home. Even with this cloud over our heads, we had a fairly idyllic 6 week holiday in Cumbria with both sets of grandparents. This included a surprise lunch for Graham’s mum with many relatives who had never even met Ben and Jessica.

Graham was of course with us by that time and we also had a fun week in London to “see the sights” especially, Big Ben! We were not able to travel to see friends as I had hoped, partly because of Jessica, and partly just because of Ben’s food issues which were more safely managed at my parents. We did get to see a few families that were local, passing, or made a special trip to Cumbria and it was just great to catch up with some old and good friends.

When we got back to California, Jessica’s transplant team saw the lump and immediately proclaimed “when in doubt, take it out”. When the lump was biopsied, Jessica was diagnosed much to everyone’s shock, with Hodgkins lymphoma. Apparently the most unlikely type of post-transplant lymphoma, so unlikely that they have never seen another case with this combination at Stanford but think it too much bad luck for one child to have to be anything else.

Although, it seemed initially to be localized to Jessica’s neck, scans showed a potential second affected lymph in her upper abdomen. She has now had two and a half cycles (each cycle is four weeks long, longer if delays due to counts) of chemo which has been as alright as these things can be. Jessica has been incredibly tough as usual and surprised everyone by her resilience. Thankfully, my parents are here to help through Christmas and the end of chemo sometime in January. We have also recently been told that Jessica will need two weeks of radiation therapy towards the end of January in both affected areas before her treatment is complete.

Jessica has stopped taking any anti-rejection drugs for her liver while her body is busy fighting the lymphoma, thankfully her liver has stayed stable, but there is a huge question of what her body will do about this next. Making the balance between taking care that her body doesn’t turn on her liver and putting her back on the anti-rejection drugs that probably caused the susceptibility to lymphoma is our next challenge. Watch this space.

Ben is now in third grade, swimming year round, loving his cycling and still majorly into construction and machines. He is busy being the best big brother and developing a wicked sense of humour. Jessica is technically in first grade but I have been mainly home-schooling her as the chemo hits her white blood cells and she is neutropenic for weeks at a time. She doesn’t understand why other girls like Barbie dolls and enjoys wrestling with her dad. Most days she still has enough energy to run everyone else into the ground.

Graham continues to work hard and play soccer badly. He coached Jessie’s soccer this autumn. I still teach music at the kids’ school when I can fit it between hospital apts and get to the gym or go running / walking whenever possible. We have both become experts at stress-management - unfortunately not, but you'd think so!

Wishing you and yours a wonderful holiday season and thanks for all your supportive messages – they help so much.

Quick update – 17 December
Jessie got her week 1 chemo (with a neutrophil count of just 510, below 500 is neutropenic and delays weeks 1 and 3). Week two went OK as well with the benadryl thankfully staving off fever and chills yet again. Week 1 is hitting just now (it takes around 10 days), Jessica is well and truly neutropenic and her hemoglobin is taking a dive as we expected from last time, her breathing and heartrate are already working overtime and it’s going to be a tough week. It is likely that Jessica will need blood soon which we would prefer to avoid but may not have the choice. A wonderful friend from my choir has donated blood for Jessica but we will not know until tomorrow whether she is CMV negative, a requirement for oncology kids, but a virus that the majority of us are positive to. Keep your fingers crossed for us that this works out.

Jessica’s chemo this week is likely to be postponed a week or more as she won’t make the counts. This may give her a break for Christmas if the blood problem gets sorted out one way or another. After that there are only two chemos to go – hurray (even though week 3 is two days worth)! Just now Jessica has no mouth sores which is great, but she will probably get leg and back pain for a few days towards the end of the week. Her hair, which I haven’t updated about in a while, is really thin but she chooses not to wear a hat unless we’re outside and I insist it’s too cold. I will try to post some photos of our holiday activities when I get the chance.

Take care and thanks for checking in on us.

Wednesday, December 5, 2007 9:02 PM CST

Just quick update. Saw head of Radiation Therapy at Stanford early this am. She does want to give Jessie two weeks of radiation therapy. This will happen after chemo and when her blood has had a chance to get back to normal, so prob end Jan.

We will need to go in every day for those two weeks, getting the lowest dose in her neck where the lump was removed and also in her upper abdomen where the questionable node is. There will be extra appointments to set everything up as this is completely separate to oncology. Jessica will also need another CT scan but without contrast or extra IV, thank goodness.

With all the toing and froing of whether or not Jessica would need radiation therapy, I've kind of just resigned myself to it. It's not great that it's now another whole month before she's done but I hoping this will make it less easy for the lymphoma to come back.

Sunday, December 2, 2007 11:03 PM CST

This week, you'll be glad to hear, we're in a good place.

At the meeting on Friday we heard that the PET and CT scans showed that the area in Jessica's abdomen that had lit up as hypermetabolic has resolved. We will never know if this was just an enlarged lymph node from the virus that landed her in hospital just ahead of the diagnosis of this or whether it was malignant. Either way, she is being treated as Stage 3 and this was the safe route to take. So everything is on track.

On Thursday I got a call from radiation scheduling which sent me into a right stress that they were setting up radiation treatment for Jessica. However, it turned out that this is just a follow up meeting with the head of radiation to review Jessica's case and make a final decision on this. We are meeting on Wed morning.

Thursday bloodwork also showed that Jessica is no longer neutropenic, only just, but - Halleluja. AND, she got her chemo on Friday and, double Halleluja, the Benadryl worked and Jessica did not get a fever and chills like the last two times. Therefore no trip to the ER and green pass to participate in all sesonal weekend Christmas activities.

So now on to the best part. We all (plus my parents who arrived Monday, triple Halleluja) - went to the very lengthy (2 plus hours) but very fun Los Gatos Holiday Parade on Sat. Jess got to ride on a massive flatbed truck with all her Adventure Guide friends and Ben (she looked a bit green but did not let it spoil her fun). Then we went up to the Saratoga hills and cut down a, I'm not kidding here, 11 ft Christmas tree! Graham and I wrestled with it all day and it is finally in the toy room just scraping the centre ceiling beam.

Now I just need to decorate, write cards and buy presents. This is a full week again with only one hospital free day. I'm hoping to make the best use of what is likely to be Jessica's last time in school before the chemo stops:

Mon - bloodwork then school
Tue - I teach Jessie's class music when I can
Wed - radiation meeting
Thu - bloodwork and dressing change (expecting neutropenia again today from last week's chemo)
Fri - long and yucky chemo that will hit big time approx 7-10 days later and knock Jessie's hemaglobin again

I'm working on the blood donation for this, starting with me, if we can persuade the blood bank. Also, starting to think with liver transplant how to take care of Jessica's liver after chemo stops. The concern is that her anti-rejection med, Prograf, made her susceptible to this unusual form of PTLD. Hodgkins is not usually associated with PTLD but Jessie's wonderful doctor has researched it and found around 100 similar case studies in the world. Interestingly, some of these cases also behave differently to typical Hodgkins by skipping a stage as it progresses down through the body. This would correlate with the isolated lymphnode in Jessica's abdomen and the lump in her neck, but no affected nodes in her chest.

Another, good thing to look forward to as we head into the roller coaster of the final cycle is, we will soon be starting to taper Jessica's steroids (prednisone). Any of you who have been there know how good that is.
Take care

Saturday, November 24, 2007 11:19 PM CST

Well it's been over a week since my last post - apologies if you've been waiting, this is another long one.

Things did get worse after that, as expected, with Jessica's hemaglobin plummeting from 7.8 to 7.4 (people are usually transfused under 8). We had 3 quite scary days of her feeling pretty ill, with high breathing and heartrate and me checking her vitals every hour or so day and night. On the Thurs of that week our doctor set up a bloodtransfusion which we declined as we really want to avoid this if possible.

This sent me into a right panic about whether we were doing the right thing even though we had her doctor's OK. Although, please bear in mind, that we could have had her get blood at the ER whenever we felt it was necessary. The thing is that if it was a life or death situation we would of course have Jessica get blood and be extremely grateful for it but we wanted to ride it out without if we could. The reasons for this are that Jessica has got through at least 5 major GI bleeds and major surgeries including her liver transplant without needing blood (although the calls were close sometimes).

We know the Stanford blood bank has good, safe blood, especially for oncology kids, tested rigorously and screened for viruses that might be dangerous when you're immunsuppressed etc etc. It's just that statistics mean nothing to us as Jessica is always the 1 in however many 10's or 100's of thousands to get something bad and let's face it, we don't need to add to her problems right now. You might be thinking, why doesn't she get our blood, but this is a beaurocratic nightmare because we are from the UK and may have mad cow disease and our blood even though designated for Jessica might somehow find it's way into the general pool. The argument about Jessica getting BSE from us is now obsolete as I carried her for nine months inside me and she has part of Graham's liver inside her.

It is certain though that she will need blood in the last cycle as the chemo accumulates and her body is hit harder and harder. I have worked this out to be the week before Christmas so my big project is now to organise a designated donor, we are lucky enough to have a couple of volunteers, and get over my angst (Jenny has helped heaps with this, thank you Jenny).

By last Saturday Jessica was back to her normal self thankfully. Her neutrophils were too low to get her cycle 2, week 3 chemo though, as expected, so we had a little lull without any chemo ickiness. It was not an easy week though. Monday we had a day off the hospital knowing what the rest of the week would bring, I negotiated bloodwork on Wed only, rebel that I am, not. Tuesday was the big PET and CT scan, the first easy, apart from a 2 hour wait as the woman ahead of Jessica couldn't stay still and needed to be scanned 3 times. Jessica then got done in 20 minutes or so.

The CT scan was the nightmare I knew it would be. The contrast drink is horrible and Jessica retched and cried through it and was let off only halfway through by an extremely lenient nurse, thank goodness. Her IV placement took 3 attempts with a lot of poking around once in which is so painful and yuck. There was no reasoning with Jessica and I don't blame her, she knows it hurts, she know her veins are hard to get (her PICC line is in the only good one), and she was begging them to stop. Truly a horrid day only improved by stopping by Krispy Kremes and getting half a dozen doughnuts including a very cute but discusting-tasting snowman one on the way home. Jessie likes to pick the decorated doughnuts smothered in sprinkles and frosted with food dyes that taste revolting, and then she only actually eats my plain delicious ones, as is only right and proper.

Wednesday was clinic, dressing change and bloodwork, still neutropenic but slightly improved. Thursday we had a day off for Thanksgiving which was lovely, we had a big feast and generally had a lazy family day. Friday we had bloodwork early to see if Jessica's neutrophils would be up enough for her to get her chemo (otherwise we'd be looking at a complete change of schedule and our chemo day would move to Mondays which would not be so great at all as the weekend gives her a chance to get over the sickies etc.). Two hours later we were told that Jessica's count was 500 the absolute minimum it has to be to get chemo (below which she is neutropenic).

This is the long chemo that Jessie reacted with labored breathing after last time and the one where she has to have a second treatment the following day. So we pre-medicated with Benadryl to hopefully stave off any worse reaction, got the chemo which took almost 5 hours, and kept up the Benadryl and checking overnight. Graham and Ben took Jessica in today for the second dose which was about 3 hours to give me a break. The Bendryl is doing it's job and Jessica seems to be doing well this time although I will keep giving it through the night.

This week is another busy one. I think Jessica may be in school as her neutrophils were kind of OK and this new chemo won't kick in for 7-10 days. I can't remember when she was last in school, I think it may be over 3 weeks ago.

Sun 25 - watch Holiday lights parade with friends. Thank goodness for so many outdoor events at this time of year.

Mon 26 - liver transplant clinic, bloodwork, and my parents arrive - HURRAY!

Tue 27 - escort Jessica on farm field trip, followed by both kids having eye check up with horrid eyes drops to screen for my eye cancer (retinoblastoma) - kids don't know this yet as they HATE going but we're dong at Stanford for first time as just can't get up to San Francisco at the moment. I feel bad for taking Jessica out of two precious school afternoons, as she is likely to be neutropenic next week and out of school probably until sometime in January, but they are both overdue apts and I don't want to be in hosp waiting areas when Jessica is neutropenic.

Wed 28 - escort Ben on field trip

Thu 29 - bloodwork, dressing change

Fri 30 - chemo, last week of 2nd cycle. Meeting with oncology doctors to discuss results of CT and PET scan (is chemo working? will they add radiation therapy to last cycle?) - I am terrified about this appointment.

I am doing loads better right now. Didn't mean to alarm anyone in my last post, please remember that I always feel better after writing and getting rid of all this stuff that's going around in my head.

But thanks for all the lovely messages and calls, they did help. Take care.

Monday, November 12, 2007 9:32 PM CST

Warning looong post and venting:

Following Halloween, the second week Graham was away, Jessica was neutropenic again (in this second cycle it happened almost two weeks earlier than in the first cycle which shows how things are accumulating and hitting her system). I feel a bit like I'm home-schooling Jess, luckily she just gets on with it most of the time and at least we weren't in hospital. It was a huge comfort to have a plan in place for Ben but I'm just as glad we didn't have to use it. Thanks so much though to my loyal local friends who took everything on board just in case, Alison, Anneli, Carol and our neighbors, Jenny and Rex.

Against all expectations we did make it to Seascape for the weekend to join Graham following his conference. This is a bigger deal than it may seem. Last week's chemo was not one that they delay for neutropenia so she had it in just over 1 hour which has to be a record (I usually factor about 3 hrs). BUT, and yes it's a big but, this is the one that she got the fever and chills after last time that landed us in the ER. So I was like a woman possessed, getting back home, packing, getting Ben out of school early and whizzing over Highway 17 to the coast within the 3 hour time window that I thought I had (all the while wondering if we would be able to stay or be forfeiting a horrible amount of money). Sure enough, no sooner than we were pulling up at the lobby, I could see that Jessica was not OK, she tried to pass it off as car sickness, so badly did she want her weekend away. The chills hit as I was carrying her into the lobby where they would not give us a room key because I have a different last name to Graham! Graham was grocery shopping in Monterey having no idea of my speedy getaway and his cellphone was out of signal as they always are in these situations. Luckily I carry a copy of our marriage license with me in case any officious official should think I'm trying to abduct my own children when we're travelling. Within an hour or so of lying down with Jess in the beautiful villa, being lulled by the sound of the sea, she was asleep. Her fever did not go over 99, honestly (at 101 it would have been straight to the nearest ER and an ambulance transfer to Stanford as she's neutropenic) but, as I had taken out the insurance of printing out all the mapquest directions to Monterey Community Hospital, I am thankful to say it didn't happen. It was a pretty stressful day to say the least but topped off by the most glorious sunset with a golden path through the sea that shone right into our bedroom.

The next day Jessica looked very pale with shadowed eyes which is getting to be the norm (we are no longer seeing the Jess of the very cute photo on this page which I think was week 2 or 3 of the first cycle). We toured the resort, to see the fountains and little aquarium but Jessica was struggling and needed to be carried on every slight uphill incline which is not like her at all as most of you have witnessed. We took a long lunchbreak with a lie down and watched Ratatouille which was a treat for the kids and the only way to get Jess to lie down. Then we spent the afternoon at the beach and again on Sunday morning before heading home. It was sooo good to get away from our four walls and what better a reason to celebrate than being halfway through chemo.

Today Jessica's white count is still very neutropenic (only 100) and her hemoglobin is below the level they usually do a blood transfusion for (this is one of the things that she has always avoided and I dread - irrationally). So we'll have another week at home, possible blood transfusion, and her double chemo that's due this Friday will probably be postponed to next week, maybe for Thanksgiving. And I will try to be thankful that it is killing her cancer even though it is making her feel so yuck.

Today was also a very cry-ie day for me. I haven't really had one of those since Jess was first diagnosed with this and started her chemo. Ben was at home as it was Veteran's day so they played and didn't really notice but since last week when her counts went so low things have been getting to me again. The constant stress of knowing your child can't even fight the bacteria in their own mouth and gut. The fact that Jessica has started getting chemo mouth sores and can't bear to have her teeth brushed. That the only thing Jessica would eat for breakfast, homemade banana loaf with chocolate chips, she now can't face anymore. That her hair is still falling out everywhere all the time, this is hard to describe as you probably wonder what did I expect. I expected I'd find it hard to have my child look like a child who has cancer but actually now I just want the hair out. It is all over all our clothes, dinners, floor, beds, every day, handfuls and handfuls, how does Jessica have so much hair (I have finally put packing tape in most rooms to deal with it multiple times a day which is the only solution in case you should ever find yourself in the same position but I hope you never do). I find it hard to be at school and see people getting on with their lives, I find it hard to have a conversation about anything else as this is all I live right now. I find it hard that I cannot leave the kids to walk along the beach without an impending sense of doom - in this case, the fact that we hadn't brought Ben's epi pens and allergy meds down to the beach and there were washed up crabs all over the place even though we're not sure if he's allergic to crabs or not. Also, when Graham gallantly drove the kids home in my car in order to let me have some rare peace and quiet in his, I just panicked about the fact that my family were all driving in a car without me and there might be a crash.

So yes, I am losing it a little but having been in a similar place during Jessica's transplant, I know this is just a phase that will pass. I will smile and tell people at school that everything's fine even though I'm screaming "it's not" inside. I will do fun things at home with Jessica and be ultra patient when she is needy and grizzly. I will treasure every moment I lie with her in her bed until she falls asleep. And I will try to still be giving to Ben even though I don't have much left to give - and Graham too, if I absolutely have to (only joking - ha ha).

Upcoming events, labs Thurs then Friday/Saturday double chemo, week 3 of second cycle, that will probably get postponed to Thanksgiving week. Next Mon labs, Tue CT scan(Jess will need extra IV for this which she will hate because PICC line given was not a Power PICC, I am querying this decision in my spare time with Patient Relations) and PET scan to see if the chemo is working. Results probably only on 11/30 because of Thanksgiving. My parents arrive in just under 14 days, not that I'm counting or anything.

Take care and Happy Thanksgiving for next week.

Sunday, November 4, 2007 10:32 PM CST

Halloween was loads of fun which I can't pay justice to in words so I'll do some new photos in a moment (if my poor computer memory can stand it). Jessica's cheer was, "My name's Jessie, I'm fine and dandy. Give me all your Halloween candy!"

I was a very happy mum this week - that Jessica got to trick or treat with Ben and friends (and Graham got an earlier flight home so was able to join us after all). An added bonus was that she got to scoff candy along the way, which in previous years was not possible as we would always be out during her fasting time for her anti-rejection medication (shhh, her liver is still doing OK).

Even better was having a wonderful chef party on Saturday with all Jessie's very best friends. She was the life and soul even though it was the day after starting her second cycle of chemo and everyone else was well too so we got to go ahead as planned. The girls made pizza, fruit kebabs, icecream sundaes, frosted sugar cookies, decorated a pretend cake with silly string, had a treasure hunt for baking accessories and chef hats and aprons of course. It was great and our kitchen is surprisingly unscathed.

Jess had a bad night following though with a tummy which could have been over-indulgence but I think is more likely due to chemo (diarrhea, or loosey-gooseys as my friend rather more nicely calls it, in case you were wondering - in all this chemo she has only actually vomited once. Partly because we stay ahead of it with the wonderful Zofran but also because Jess has such a strong consitution). It was like the previous week's fever, came on out of nowhere and left just as quick. With the extra hour we got to catch up on our sleep though.

Graham away this week but not far, thank goodness (he avoided another trip on the heels of Chicago last week because a generous colleague volunteered instead, you know who you are, thanks so much, especially from me to R&B).

Wednesday, October 31, 2007 0:14 AM CDT

Quick update to say we are all fine after small earthquake in San Jose (just down the road). Jessica loved every minute of it but poor Ben was deeply upset and is still shaking.

Jessica had quick trip to ER last Friday night with very sudden onset of fever (over 101 means we have to go straight to hosp, do not pass go etc.). She had a horrible stick for blood cultures but then enjoyed watching Charlotte's Web. All tests for infections came negative and she was not neutropenic so we were allowed home at about midnight. I think was poss side effect of vincristine.

So of course Jessica missed her Adventure Guides rough out the next day even though she was almost back to normal. However, we more than made it up to her celebrating her birthday on Sunday (one day early as G left for Chicago that afternoon). She also had a great day at school on Monday being spoiled rotten.

Looking forward to Halloween tomorrow, costume parade, party, trick or treating etc. I'll post hotos of kids in costumes soon. We had hosp-free day on birthday. Dressing change today (Tue), labs Thurs, chemo Friday. Hopefully no more earthquakes!

Happy Halloween.

Friday, October 26, 2007 0:16 AM CDT

My computer packed up today - my fault for clogging it up with photos and running out of memory. Will not have any access to update for at least a week with Graham being out of town and trying to get mine fixed.

This Friday, Jessica has the last of her first cycle of chemo (two more 4 week cycles to go). Last week was no 3 and we were a quarter of the way through her treatment. After tomorrow we will be a third of the way through her treatment. I like the way these numbers go although the reality seems much slower.

G and I both struggling with the stress of everything (although garden, which was just the icing on the cake, almost completed). Jessie had a bit of a stomach bug last night and barely slept so she was not in school today. Labs were good though and she is asleep now so I'm hoping it will blow over easily and we can catch up on sleep.

This is a tough chemo week matching week 2, with bad constipation, bone pain, nausea and neutropenia. Really don't want to take her into hosp on her birthday Monday but would not want her in school possibly neutropenic and me not knowing so prob best to check. Thinking about trick or treating at hosp on Wed pm, they have a big event and I think we should maybe go one time for a fun reason rather than always medical but Jess not keen (Ben very keen to miss afternoon at school). We'll see. . .

Happy Hallowe'en!

Saturday, October 20, 2007 11:11 PM CDT

Chemo Wk 3 finally happened this Friday and Saturday. Jessica's neutrophils jumped from 400 on Mon to 2200 on Thurs. The meds were the same as Wk 1 but with an addition called VP-16 which needs to be given on two consecutive days.

The first part of the week was spent quietly at home catching up with schoolwork. I kept Jessie out of school as she was neutopenic and it was definitely the right decision as any fever would buy us a minimum of 2 days in hosp (so 3 days at home is definitely preferable). We still managed the park with friends in the afternoon which was lovely (esp on the somewhat frenzied steroid days). I got so much laundry done that I even started washing cushion covers and rugs (I haven't had to move on to the drapes/curtains just yet)!

On Thursday Jessie had bloodwork and then went to school. At which point I did a super-fast whiz round the shops as we hadn't had a chance to go at the weekend (G and Ben away) or the week with Jess home. I spent a horrible amount of money in Wholefoods but am now stocked up for at least 10 days including food to leave with friends who will care for Ben in case we have to be in hospital while G is away soon (my plan is in place, thanks for all your offers, I just have to write it all down for my super-wonderful friends, my next job after this).

Chemo on Friday took about 3.5 hrs and Jessica did really well after until bedtime. She mentioned that she had a funny feeling in the back of her throat and her breathing felt strange. This, of course, set me on high allergy alert especially as she'd had the new chemo med. So I stayed with her until she fell asleep but her breathing was still not normal, unusually heavy and fast but no fever. We watched and waited rather than call the hospital with a false alarm, at least we have all the epi-pens at home for Ben, but Jessie's breathing settled after about 3 hrs. We still set the alarm to check her through the night and gave her an anti-nausea extra early.

Jessie woke up bright and well so we made the most of it and went to Ardenwood farm for their pumpkin patch and corn maize. It was a perfect day and so much fun, really our first trip out of the area for weeks (poss even since we got back from England). We all had a wonderful time and Jess proclaimed it "the best day ever". We went straight to the hospital for the extra 1 hr chemo at 1pm and to cut a long story short, they took lots of precautions over her possible allergic reaction and we didn't get home until 5:30pm (G did the majority of the stint with her). We are however very grateful for the med team's attitude of "let's not take any chances". Allergic reactions to this med are unusual, but that terminology doesn't usually exclude us(!), so we will continue to medicate Jessica through the night and for 24 hrs. We're all pretty tired.

So glad that Wk 3 is finally done - only 9 more to go. Quick request, is anyone in UK a member of Next direct as there are 3 hats that I'd love to order from the website? Various people are coming out over the next few weeks and could bring to avoid postage strikes and costs. Please email if you can help on that. Jessica's hair has been falling out in handfulls all week and is just EVERYWHERE. The thing is that she has so much of it that she doesn't look that different yet - I think it'll all be gone sometime this week however, so I am hat buying (or rather cute cotton beanies hunting).

Have a good week - thanks for your lovely messages. To those of you that I've never even met, so nice of you to write and let me know you're checking in and thinking of Jess.

Next Sunday, Jessie turns 6. I want her to have a wonderful birthday which we will get as much mileage out of as possible. More on our plans next week . . .

Monday, October 15, 2007 11:11 PM CDT

Chemo cancelled again . . .

Jessica still neutropenic, although neutrophils at least moving in right direction, so no need for shots, from 300 last week to 400 (but need to be over 500 for chemo). WBC and RBC good.

Went in for labs first thing this morning and then had to drive back in later for PICC line dressing change, but at least bumped into our friends from school. Have to keep Jessica home from school, of course, as can't fight infection but did meet several close friends at park in afternoon. Happily for us, they are a mass of healthy and understanding families (6 mums and 15 kids!) and Jess had a ball - thank goodness for the fresh air of outdoors and good California weather (although the heavens did open but it was time to leave anyway).

So we might do school Wed if Jess' classmates seem well. Then labs again Thurs and chemo either Thu&Fri or Fri&Sat. Now a full 2 weeks since last chemo. Bang goes my wishful-thinking goal of being done by Christmas but it can't be helped.

I'm working on a Ben emergency care plan, in case Jess gets admitted into hospital, as Graham has two short business trips planned. With any luck, if a plan is in place it won't happen (the reverse is the sod's law that runs our life).

Jess' hair is definitely starting to drop. I am going to be ridiculously upset about this, I think because it is harder to pretend it's not happening when there is a constant visual reminder. Also, my brain is just not functioning on a level of being able to have a normal conversation and today I was horrified to realize that I forgot to ask the doctor about Jessica's liver numbers today!

I am very grateful to all the people who are reading about what's happening to Jess. It's lovely to get your emails and knowing you're out there sharing our load.

Friday, October 12, 2007 11:39 PM CDT

The best laid plans . . .

So we were just getting used to the routine of labs Mon/Thu and chemo Fri (also Sat this week as Week 3 of cycle). This allowed Jessica to be mostly at school giving her the weekend to recover and us to work on the latest side-effects (more about that later). When a spanner got stuck in the works.

Namely Jessica's chemo today was cancelled as her neutrophils are too low. In fact dangerously low (300), she is neutropenic once again, and we have been told to avoid indoor places although she is mainly at risk from the bacteria in her own mouth and gut! If she runs a fever at the moment we have to go straight to ER and be admitted for a few days for blanket antibiotics as her body cannot fight anything until her neutrophils pick up.

We are going to check her blood again on Mon and, if neutrophils have picked up to over 500, have her chemo later that day and Tues (otherwise daily injections to force them up). This turns all our carefully laid plans on their heads. Graham and Ben are camping with Adventure Guides this weekend so we're on our own. I am not sure if I should be taking Jessica to the school Fall Festival with catered BBQ - will she get some horrible food bug that only she can't fight? - although she desperately wants to go to see her friends and especially the scarecrow she and Ben decorated last weekend, "Mr Conehead the Construction Worker"! (I know, you could have guessed)

This is just the first of loads of stuff she is missing right now and it upsets me so much because she is just a kid and should get to go. She has never been at school for reading buddy time, and she just loves her 5th grade buddy who is our neighbour, she missed an outing to the theater today, she's going to miss her adventure guides meeting on Mon (one of the highlights of her social calendar), she's going to miss soccer practice. We're both going to miss this week's music that I teach to her class, as well as the last two days of early pick up at school (for conferences) which means precious extra time at the park with all our friends and precious long afternoons with Ben.

We were doing such a good job at forgetting what's happening and getting on with a normal life and sod's law (or murphy's law as it is more politely known here in the US) intervenes and I am not happy.

Since my last post when I said how Jessica's side effects were happily minimal, of course they hit with a vengeance the next day. Sunday was a sicky day with major irrational crying moodswings that went on all week, pretty exhausting for all (and even affecting Ben who, we mustn't forget, tries to jolly his favourite playmate through all this). On Wednesday night the back and leg pains started. When Jessica said to me in the car on the way back from the hospital that her leg was aching again and then qualified it by saying "actually Mum, it rather hurts a lot", I knew it must be bad, as Jessica never complains about pain (and she has had more than her share of painful procedures).

However we did have a lovely restful day today at home enjoying the respite from chemo - reading, cooking, baking and working on art projects. And we'll have a lovely girls' weekend doing more of the same if we can stay out of the hosp and we'll get that chemo no.3 done next week! Actually, just thought of a silver lining to the cloud, with this change of chemo day we might just coincide with one of our three new friends from school who are also undergoing chemo right now and might have a treatment earlier in the week like us - a party in the day hospital would make it all more OK (don't you think that's a weird coincidence 4 families in one school, all girls affected, only 2 with same cancers though?).

Here's to enjoying your own "normal".

Saturday, October 6, 2007 11:33 PM CDT

Just to let you know about Jessica's 2nd chemo. So far so good, this one has almost been easier than last week although the next few days may tell a different story so I have my fingers crossed. To look at Jessica you would have no idea at all what is going on - she had a great 2.5 days in school.

On Monday morning I sent Jessica in to school with one of her horrid new lozenges and she was promptly sick directly I left (her only vomit so far). I felt so bad as I had pushed her to go as she often doesn't want to after a break. Luckily her teacher and I had worked out a plan of what Jess should do if this happened but I still felt terrible. When we got home, to the contractors starting to rip out our garden, good timing, the phone rang and it was Ben saying he had a tight throat (mainly due to wanting to see the garden work!). At this point I completely lost it, for the first time since all this started, in hysterical laughter and tears - and Graham diplomatically decided he had better work from home.

At home Jessica is still somewhat wired, emotional and dealing with on/off nausea but it is still within the realms of her normal self and manageable. This morning Graham gave her an anti-nausea tablet at 5:45am on his way to watch the rugby (good result!) so she woke up much more comfortable than last week and has had no vomiting as yet.

Breakfasts are harder than usual. Jessica has one bite of loads of different things including cookies and pretzels, as well as pear and cereal, and I hope it adds up to enough to keep her going until recess.

Jessica's liver numbers are fluctuating a little but still stable which we are SO thankful for. Her white bloodcells (WBC) are plunging which we'll have to watch as that's how she can fight infection. In some ways that was good to know, as she's been so apparently well that I had to ask her drs if the chemo was working! Apparently it does have a cumulative effect though so we'll see as time goes on.

There was good news for a friend of ours with a medical scare which lifted the week. Just started working on Independent Education Plan for Jessica in case she can't go to school with WBC too low. Also, 2 cases of the dreaded chickenpox at school, if it goes into her grade she'll have to stay out (don't know what we'd do if it's Ben's grade).

I can't believe how little time we have for life in between being so much at the hosp (5 min chemo treatment on Fri took 3 hrs of waiting first). All our friends are making sure that non hosp time is of top notch quality though - thanks everyone.

Sunday, September 30, 2007 11:53 PM CDT

Sorry for lack of update, just exhausted. Jessica's first chemo went as smoothly as it could, preceded by the PICC line dressing change which really is the most traumatic thing right now, just extremely painful for her.

We were in the day hosp from 3-7pm Friday and Jessica had no adverse reactions and took anti-nausea meds ahead of time and all through Sat (and avoided vomiting). It was more than a little disconcerting when the nurse gowned, gloved and goggled in order to give the last two chemo drugs, but Jessica took it in her stride with my gloss-over-the-truth explanation. I checked her every hour or so through Friday night which I think will just become routine for the night after.

On Sat, Jessica looked just terrible, v pale and eyes ringed although I don't think other people noticed. She happily went to her soccer picture day and then decided she would also play the game and went ahead and scored her first goal of the season! Graham was especially thrilled. Today she has been her normal self in every way and will have a good week at school I hope.

Jessica is now on steroids every other day so she was a little wired on Sat to say the least, so far it has not affected her sleep though. I am hoping she'll save her mood swings for home and not school. Prednisone makes you very hungry so that usually counteracts the no appetite effect of the chemo.

I feel a little like post transplant because she has about 7 new tablet medications that I have to get my head around. All need to be taken at different times, varying from every 2hrs to two or three times a week (some days there are more than 16 tablets in a day - thank goodness she can swallow pills and we're not dealing with liquid suspensions and all those syringes to wash out any more).

Tonight as Jessica was getting ready for bed she told me that she couldn't wait for her hair to fall out so that we wouldn't have to wash it!
Take care.

Tuesday, September 25, 2007 10:33 PM CDT

So today we finally had our big meeting to discuss Jessica's Hodgkins treatment. It was a good 2hrs where her drs explained that although the lymphoma seems localizeed there is potentially another lymph node in her tummy area that could be affected. This would stage the disease as 3 rather than 1, although the treatment remains similar so we lose nothing by thinking of it that way and erring on the side of caution.

The treatment decided is Stanford V for 12 weeks, or so as there may delays due to any problems that come up, starting this Friday. The potential side effects are absolutely horrible (any search will list them for you), but should not affect her fertility; we will take one day at a time and bear in mind that this is a relatively short timeframe.

Jessica will continue to have labs on Mon & Thur to have her liver monitored closely. After two cycles (8 weeks), she will have another CT and PET scan and the drs will decide whether to add radiation therapy to the last month of treatment.

It is hard to think of Jessica having to undergo all this. I think she has a good understanding of what will happen and she will be able to be in school unless her white blood cell count is too low for her to fight infection. I'll keep you posted on how things go.

Just a little update after various people in the know have requested details of the exact chemo regime:

Prednisone throughout (every other day). This causes uncontrollable hunger,mood swings and sleeplessness. Jessica does not have a good track record with these steroids (both as a baby with her ulcerating hemangioma and post-transplant where she got quite psychotic and was weaned off super-early).

WEEK 1
vinblastine (velban)
doxorubicin (adriamycin)
nitrogen mustard (mechlorethamine hydrochloride)

WEEK 2
vincristine (oncovin)
bleomycin (blenoxane)

WEEK 3
VP-16 (etoposide)- 2 consecutive days
vinblastine (velban)
doxorubicin (adriamycin)

WEEK 4
as week 2 (these are supposed to be the worst weeks)

Thanks for checking in and take care.

Thursday, September 20, 2007 11:48 PM CDT

Quick update to say that Jessica's PET scan results show the Hodgkins is localized. We're happy as it's best case scenario but know there's still a long and not nice treatment to undergo with no guarantees at the end.

There is a lymphoma tumour board meeting on Mon am where they will discuss Jess and hopefully get some consensus on how to treat her (we know there is quite a difference of opinion as this is such an unusual combination). Will update sometime next week as we know more.

Take care.

Sunday, September 16, 2007 2:20 PM CDT

Sorry about the delay in news and not really much news to share either. Since Jessica's new diagnosis we've either been struck by lethargic exhaustion or an energetic drive to get things done, there's not much in between.

It was another shitty week of hosp mainly as I was dreading the PICC. Jessica was still tired on Mon recovering from her virus and I couldn't wake her for school. She was distraught when she realized she'd missed the start and I just took her in late and picked her up at lunch for liver transplant clinic. Her teachers are being wonderfully supportive and understanding. On Tuesday she did a whole day of school and is actually completely back on normal form, fighting with us and looking well; it's so hard to believe there's anything going on.

With that normal day came loads of new apts which lead me to a near breakdown, feeling overwhelmed, largely because I haven't had an opportunity to cry this one out yet. My wonderful friends rallied that night with cheese, chocolate and Kleenex; what more could I ask for and I felt mostly restored.

On Wed I thought she had Oncology clinic but it turned out it was this week but I kept her off school as someone had strep in her class. On Thursday she had her PICC line put in to her arm, just above her elbow. It was a tough day nothing to eat or drink since day before, scheduled for 3pm but only went in at 5:30pm. I wasn't allowed back to the OR with her so she had to walk back there herself with the anesthetist, she's so young but so brave, but they ended up calling me back as she had to wait in that terrifying machine-filled OR. So I robed up and ended up giving her the anesthetic mask myself. It was weird because the procedure was done over at the adult hosp and I was waiting where Al and I had waited for Graham to come out of his donor liver surgery which brought back a lot of memories.

Fri was again nil by mouth for Jessica's PET scan first thing in the morning. It was located in a trailer at the back of Stanford and she was injected with one of those radioactive contrasts taken out of concrete surrounded containers - so weird and disconcerting (she's had so many of these nuclear med tests!). Glad the PICC line was in though and Jessica kept totally immobile for the 30 mins that it took like she always does, such a star. We then went over to cardiology for an echo, it took us a while to explain to the guy that used to look after her enlarged ventricle that we were now here to prepare for chemo. They were great though and fitted us in to a gap so we got to Krispy Kremes early for a much-deserved treat and had the rest of the day at home.

I was hoping for preliminary results from the PET but we never got a call. However, her liver numbers came back good, still trending down from the virus and WBC back to normal - hurray. We are still concerned that she is on no immunosuppressing therapy and looks like chemo will not start for yet another week.

On Sat Jess was not wanting to go to soccer we think because of concerns about her PICC line although I've covered it in coban so it's not hanging out (and she's ordered some neon pink coban which hopefully will arrive soon). Once there she did great so I'm glad we finally made it to a game.

This week we have an apt with Radiation Oncology (it is terrifying to think that she is going to get ratdiation therapy) and Liver tx on Mon afternoon. Then Onc on Fri. I hope we will hear soon what stage her lymphoma is and what the treatment plan will be.

Thanks everyone for keeping up with our news, your sympathy and support are really helpful. Many of you have thoughtfully offered meals, thanks so much, but it doesn't work because of Ben's food allergies so pls don't worry - also it's good to keep busy . . .
Take care.

Sunday, September 9, 2007 1:48 PM CDT

Swiftly on the heels of Jessica’s newly diagnosed lymphoma (following a biopsy after the lump in her neck was removed two weeks ago), Jessica started up a horrible fever last weekend. After watching her at home we took her into Urgent Care to be assessed and then straight to Lucile Packard ER (Alison you were a star that night THANK YOU SO MUCH).

It turned out her temperature was over 104 (normal testing was not even registering a fever, they took it rectally). After 3 failed attempts to get an IV in, they at least got her blood cultures and admitted her – luckily we got a private bed on the floor and were greeted by many nurses who still remembered her 2 plus years after her bleeds and transplant. Of course it was a holiday weekend so to cut a really long story to just long:

Sun night – IV finally in. Find out liver numbers are in the 500-600 range (instead of 30-40), worse than pre-transplant. Prograf level really low. Docs questioning us on our administration of prograf and assuming fevers due to rejection!

Mon – Fevers continue, Jessica vomits, many sticks for bloodwork (unfortunately IV is in her arm with the good vein, so every stick means much poking and she is having a really tough time) . That night Jessica reacts to vancomycin IV antibiotic with Redmans (she turns bright red, goes crazy scratching her scalp). I am so worried she’s having a major allergic reaction as she was on vancomycin for a long time pre-tx but it turns out it’s a known possible reaction and they can give her Benadryl first and slow down the rate of the infusion).

Tue – new Oncology doctor informs us that Jessica has Hodgkins lymphoma (the type that is NOT linked to post-tx lymphoma, PTLD). Silver lining to her being admitted is that it is easier to arrange further tests to find out what stage the lymphoma is at. She has a IV contrast and a bone scan that afternoon. Then we have to get her to drink a contrast for a CT scan that evening, she has a tough time as it is disgusting and vomits it just after she has finished. Star that she is, we take a prograf break and start again whilst watching the movie Annie and Baby Einstein, she keeps down ¾ of it and we go for the CT at 10pm at night. More pokes that night and she’s running out of veins that are not bruised or blown.

Wed – Jessica has more vomiting but is scheduled for a liver and bone biopsy. Her liver numbers drawn that morning have dropped and it is decided to cancel the liver biopsy as too risky. I am allowed to stay with her while she goes to sleep with the anesthesia – this means a lot to us. Jessica is v pale, even lips. We are told she is severely neutropenic (dangerously low white blood cells and neutrophils) so they blanket her with more antibiotics as her body is practically unable to fight anything. She starts up a rash over her hairline and back.

Thurs – Jessica’s bone scan comes back negative, her liver numbers improve, her neutropenia is slightly improved. She wakes up with very bad diarrhea and her rash is all over her body. We meet her new Oncology fellow Dr Davis, who is a lovely lady and learns all about Jessica’s complicated history. We try to organize the final part of her lymphoma staging which is a PET scan, we are hoping for Fri as she still has her IV and will need a contrast again. After many conversations between the Liver Tx team and Oncology it is decided that we should take her off her prograf, the level has gone from too low to too high and they think that as it leaves her system it will be like tapering it off. That evening I notice her arm all swollen and realize the IV has gone, so we take it out and mercifully the docs decide to leave her without for the night.

Fri – Jessica’s colour is back, she has some energy and her blood numbers are better. I pack hoping we can go home after new IV and hopefully PET scan. Finally, we hear that PET scan will not be until next Fri which is SOOO long to wait (I intend to ring every day for cancellation but we have to do the no eating from the night before and get another IV ahead of time). Towards the evening we meet her new Attending Doc who tells us how her liver tx followed by Hodgkins lymphoma makes her “unique”, they have never had another child with that combination. He thinks it is too much to just be “bad luck” and feels that it is right to take her off her prograf as although her EBV pcrs were negative, there was some EBV found in the film of her biopsy (it can hide out in parts of the body). He also tells us that her bone marrow biopsy was negatve but there are some questionable lymph nodes in her abdomen, although none massive growths. He thinks she will start her chemotherapy/radiotherapy on the Monday following the PET scan. He then let us GO HOME – hurray (we need to catch up on sleep and let Jessica’s veins repair themselves).

PS. We think the fevers etc. were due to some weird virus.
PPS. It is terrifying having Jessica off prograf (if it wasn’t for the one antibiotic she is still on, she would be on NO medication).

Plan for next week:

Sun – labs to see how liver is

Mon – poss school then Liver tx clinic

Wed am – labs and Oncology clinic, schedule PICC line (like a longer term arm IV, sedation required) or central line (sort of a chest IV, more permanent and requiring anesthesia) insertion. Those of you with experience pls let me know views pro and con each and I’m going to ask Jessica which she would prefer during the week (we’re trying to have a medical free weekend).

Fri 6:45am – IV and PET scan, meet that evening with Onc team to hear what stage lymphoma she has and treatment plan starting Mon.

What was the first thing Jessica and Ben started playing this morning – HOSPITALS!

Thanks for all your thoughts, prayers and support. Experiences on Hodgkins Lymphoma and PTLD gratefully received, also views on PICC versus central line?

Sunday, June 24, 2007 0:44 AM CDT

Well the kids are highly excited to be visiting England for 6 weeks this summer. It's momentous for all of us, Ben moved away when he was a baby and can't remember, Jessica has never been and I have not set foot on an airplane since the one that brought us out to California.

I'm also very anxious for both the kids' health while we're away but I have organised medications, doctors letters, made food plans with my super-wonderful mum with whom we are staying. We will not travel around too much to lessen the risk of anything happening.

Jessica has had a great first year of school (see new photos). The EBV still rears it's ugly head now and then but her drs are staying on top of it. She's had a weird peely lip thing and poss cold sores which can be very problematic when you're immunosuppressed. But it could even be food allergies brought on by her anti-rejection meds so we're waiting for test results on that.

Graham is heading up Mt Shasta tonight so I'm staying up imagining him setting off in the cold around midnight. Huge thanks to all of you who generously sponsored him - the team as a whole have raised over $100,000. I'm so proud. Update soon with more info on how it went.

Friday, December 22, 2006 11:11 PM CST

Sorry, everyone, that our Christmas cards will be received late by just about everybody. And that we have been hopeless about emailing, calling and updating this website. We have no good excuse, although we think you may excuse us as it is good really – normal life got in the way.

It really has been a great year and we would be shouting this from the rooftop apart from the fact that the year isn’t over yet so we’re whispering it – Jessica has not had one overnight hospital stay. Not to say there haven’t been worries, if you have time to read our journal you’ll know that she’s been positive for the EBV virus for the best part of this year (this is the virus that causes mono/glandular fever but can cause really bad complications in immunosuppressed people). We’ve been trying to keep on top of this with medicine changes and at last months labs it was back to an OK level, let’s hope it stays that way.

Jessica, as usual, has been showing no symptoms. People keep saying how great she looks, etc. but you have to remember that even the day before her transplant she was taking running jumps into the pool. Jessica started kindergarten (half day) and as her first report card (which she managed to lose) said, “Jessica just loves school”, she is the class “social butterfly”. She has had a few colds and stomach viruses but we are incredibly lucky to have wonderfully understanding families in her year and classmates who truly do their best to help keep her healthy.

Ben started second grade and has finally just settled down to accepting that school is at least partly about work. He has a brilliant teacher whose background is in science which suits him down to the ground. Ben has been doing the usual basketball, baseball, soccer year and is a great swimmer and cyclist.

Graham is fully recovered from the op and continues to pretend he can play soccer. As most of you know, he climbed Mt Shasta in July to raise money for the American Liver Foundation – thanks again to those of you who were able to support him – and will be organizing the event next June, should any of you feel like joining him. Graham has also become a director of the California branch of ALF and we are both training to work at Lucille Packard Children’s Hospital in parental support / advice roles.

I continue to work out, enjoying yogilates (which Graham is convinced is something you order at Starbucks), singing in my choir and teaching music at the kids’ school. I’ve also organized our wonderful holidays to Yosemite in Feb for the kids to ski (Ben was soon up on the runs but Jessie was hampered somewhat by never learning how to stop), Santa Barbara in Aug for Graham’s 40th (shhhh) and Disneyland for Thanksgiving. The latter was just fantastic and in true Disney-schmultz reduced me to tears when the rest of the family was on Dumbo and I realized how lucky we were to be there (before you judge too harshly, please factor in previous trip to Disney being cancelled due to transplant and Jessica’s unerring ability to fall sick prior to a trip).

So there we are (please see new photos), happy and healthy and hoping you are too.

Tuesday, July 18, 2006 11:46 PM CDT

I am so happy to be writing that we are celebrating Jessica’s 1 year transplant anniversary. This time last year we were facing a truly nightmarish situation, Jessica scheduled for a liver transplant and Graham undergoing massive surgery in order to give her part of his liver (it still makes me feel sick to think about it). It’s been a thankfully smooth year, aside from one small rejection bout, cushioned by wonderful friends who have stayed away from us when they or their kids were sick and indulged our neurosis about germs. Jessica returned to preschool in April and will start Kindergarten this Autumn.

Jessica has had a few colds, the Mother’s Day stomach flu and an ongoing battle with EBV (Epstein Barr virus, which causes mono/glandular fever and can become very serious for people who are immunosuppressed). We are trying to keep on top of it by lowering her anti-rejection drugs and upping her anti-viral drugs in order to help her body keep the virus level low. She currently takes 1mg of prograf morning and night (keeping her level around 5, for those of you who like to know these numbers as much as we do). We have just lowered her second anti-rejection drug, cellcept to 100mg twice a day. She also takes valcyte 300mg (anti-viral), bactrim (antibiotic) daily, and has just stopped taking a magnesium supplement. So few meds compared to directly post transplant.

This July has had a couple of other momentous occasions. As most of you know, Graham climbed Mount Shasta (at 14,161 feet) raising over $10,000 for the American Liver Foundation’s climb for research. I am so proud of him, it was no mean feat, especially after his surgery. Huge thanks to all of you who were able to sponsor him.

Also, Ben has just had his 7th birthday, as you can see in the photos. We had a wonderful party for him with an inflatable waterslide on which both kids were unstoppable.

Wishing you and yours summer days filled with good health and happiness.

Tuesday, July 18, 2006 11:46 PM CDT

Wednesday, April 5, 2006 10:42 PM CDT

Hurray, hurray, Jessica's labs are finally back to normal (don't know what that was all about, as always). V hard to say everything is OK as so often have been proved wrong a matter of days later but . . . We have decreased her prograf again and are trying to wean her off magnesium.

Jessica is thrilled to be going back to preschool after Spring Break. It'll be strange to be able to go running without pushing a 50lb child and her array of entertainment but I'm sure I'll get used to it really fast.

Graham's been doing tonnes of travelling and will have to knuckle down to some serious training for his Mt Shasta climb in June when he gets back. He will be raising money for the American Liver Foundation. If you are interested in sponsoring him, email me for a link to his website (which will be up and running soon).

Wednesday, April 5, 2006 10:42 PM CDT

Thursday, March 2, 2006 1:25 AM CST

So I'm really really really sorry I haven't updated earlier. Just the Christmas rush and New Year blues to blame.

All is fine. Jessica on 1.5mg prograf twice a day. Keeping well although strange rise in her ALT, not overly alarming but not really OK either. Tried changing her antibiotic from bactrim (tablet) to pentamidine (nebulizer). The latter was a 5 minute treatment that took over an hour to administer because Jessica literally threw the biggest fit. Don't really blame her as the mask is identical to that of an anesthetic and she's had too many of those in her short life. Mind you she's making an equal fuss about having her hair washed currently, bath or shower, so don't feel too bad. ALT improved slightly but not back to normal so not sure if medicine change made any difference. Waiting to hear from docs whether we return to bactrim or have nebulizer treatment again (or choose IV instead) next week. Luckily it's only monthly.

My online liver friends have developed a fantastic new forum called liverfamilies (link at bottom of page). It's hugely helpful and supportive to know that others completely understand it all. Sharon's description of living with liver disease as living with a lion is spot on:

"The lion is always there... Others find it easy to forget he is there; ... you suddenly stop and think ‘That’s a LION’ and it absolutely terrifies you. Even though he is asleep, he’s still a lion. He might wake up at any moment... and then what can we do? We cannot run, for he is our lion and we have to face him... Sometimes, the lion may stir from his sleep. He twitches a muscle, or snores, or his eye opens just a crack. Your mouth is dry, your heart pounds – until long after he is peacefully sleeping again... We can only hope that he stays asleep, for there is no way to make him go. He is part of our lives, and we have no choice but to face him with all the courage we can muster."

Everyone means well by congratulating us on Jessica's transplant and always comment on how well she looks. I find this really weird as this was not something we chose to have happen to us and it is not all over now. Also, she almost always looks well, but she could be in major rejection inside and we would not know from looking at her.
So, I think the lion has maybe just opened his eye a crack and not closed it yet. Can you tell?

However, we had an amazing week in Yosemite for the winter break (see new photos). We were slightly concerned with the labs that Jess might have to have a biopsy and inpatient rejection treatment. But third time lucky - our previous 2 visits to Yosemite were prefaced by her broken leg, and a major bleed last year. Fortune smiled on us, we arrived at the tail end of a major snowfall and then had blue skies and high temperatures for the rest of the week. Ben was on the chairlifts in 2 lessons and Jessica bombed down the slopes at breakneck pace with delight but never learnt how to stop. Graham tried to remember how to ski and I took it all in. Thanks for stopping by.

Monday, December 5, 2005 10:53 PM CST

Happy December everyone! Oh my goodness this time of year flies. We are all doing fine, even though my parents have returned to England (we have so much to thank them for). Graham is really and truly back to normal. He spent most of Thanksgiving weekend up a tree or on the roof putting up our holiday lights. I tried to explain that I would prefer no lights than him with a broken leg or worse but got nowhere.

All my friends are being super-fantastic about staying away from us if they or their kids are at all under the weather. It's weird because a lot of get togethers get cancelled and we're spending a lot of time at home but that's better than spending a lot of time at hospital so I'm not complaining. It's bizarre to try to be careful about germs when people are at their most contagious before the onset of symptoms but we're just doing the best we can to keep Jessica safe.

Her prograf level ran a little low the other week, 6.something so we upped it by .5mg in the evening and it rocketed to 14. I could tell immediately by her behaviour which is a good thing to know for the future. So we're back to 2mg in the morning and 1.5mg in the evening. Clinic this week and labs so hope for stable results.
Take care.

Tuesday, November 1, 2005 11:11 PM CST

We celebrated Jessie's 4th birthday on Saturday. It was pretty amazing to have a trip to a local theme park and just enjoy her enjoying all her prezzies. We postponed her party til next weekend as 3 out of 5 friends had colds, so we're hoping to stay bug-free till then. Yesterday was of course Hallowe'en, the kids were extremely excited to say the least. Ben's school had strategically arranged a teacher training day so he was home and much candy was consumed (prior to the "trick or treating" however, as Jess was in the middle of her prograf fast and Ben is allergic to most of it anyway and trades it when we get home). Last week Graham went to his first footie/soccer practice and then announced he would play in the game this weekend. I suggested he might want to build up gradually but my words went unheeded of course and actually, I'm just happy he's getting back to normal things. New photos are posted (if I can remember how the technology works!). Treasure your little monsters.

Monday, October 17, 2005 4:28 PM CDT

Well, there's happy news still from our end. Last week when I was changing the dressing on Jessie's bili-tube, I suddenly realized the last stitch was out and the whole tube was sliding in and out (it's supposed to be kept as clean as possible so this was a bit stressful). After some debate with the docs, it was decided that it should come out a week early as this Thurs is her 3 month tx anniversary - hurray! We went for extra labs today to make sure everything stayed stable without the tube and it seems to be good. Jessica is just thrilled to be able to have baths again. We also drop a medicine at the 3 month stage and have lowered her prograf, only by 0.5mg but every little bit helps as we're going to start seeing friends again soon. We also went away this weekend, to a kind of upscale camping resort on the coast, just an hrs drive away. We stayed in a cabin but could only get a tent for my parents, poor things (they did have heated mattress pads though and did have the option of staying with the kids in the warm!). It was so wonderful to get away. We had long hikes and played at the beach - the weather was just perfect (photos soon - hope you've all seen the new photos on the link at the bottom of this page!). Take care all.

Friday, September 30, 2005 10:05 PM CDT

All still well and happy here. Jessica avoided strep throat, got over a mild cold pretty easily and continues to have good labs. We've had a few trips to the park, shops and even the pumpkin patch. Trying to pick times when there are preferably no other people and hand-sanitizers are our friend (luckily Jessica loves purelle!). Graham did himself a bit of an injury last week helping move his broken down car out of the garage. It's sounds ridiculous that he should have been doing that but it was just one of those moments when you forget. It's such a shame because he has actually been so sensible and careful (most out of character I hear you say) and apparently he has moved some of the muscle that was healing out of line. It's tough for him to have more pain again and a bit of a setback - I'm trying to be sympathetic but really am a crap nurse (good thing my parents are still here because my mum spoils him rotten, he's never had tea in bed from me!). Jessica had a developmental check at the hospital and their warped recording has her operating at an 8 yr old level. Precocious though she may be, that seems a little extreme. Her word definitions were: for "hero", "that's like a superhero, someone who saves people" (has her big brother to thank for that), and "castle", "a home (after some thought) for a king and queen". Thanks for still checking in on us.

Sunday, September 18, 2005 2:55 PM CDT

Everything continues to go well. Jessica is having labs taken every week but clinic only every two weeks if she stays stable (one liver function is raised this week which we'll keep an eye on). Graham is back in the office full time and doing OK, still not sleeping well though so pretty exhausted. Ben has had strep throat this week, he's hardly ever sick, but second time this year! We've been trying to keep the kids apart, washing our hands madly, and Cloroxing the entire house regularly so that Jess doesn't get it. Jess and I are fed up of the bili tube drain still in her tummy, she hates having the dressing changed (sticky tape is worse than any needle) but we're over halfway now to it being removed. Starting to make plans for her 4th birthday party at the end of October. Jessie wants a unicorn party (better than the original request for a baby jaguar party - from Dora the Explorer). We're going to keep it a very small affair in the garden and it will prob be the first time she'll see her best friends since July, poor child! Everyone is to wear their Hallowe'en costumes - she's finally decided on supergirl (other option was pink power ranger), quite appropriate really.

Tuesday, September 6, 2005 10:38 PM CDT

No news is good news, right? (but I know, it sometimes means we're in hospital, not this time though, glad to say). Jessica's doing great, good liver numbers all last week. Prograf level a bit down yesterday (labs but then followed by an idyllic sunny day at the beach as was a holiday here), so we've upped it and hope she stays stable. Graham just about survived his first couple of coaching sessions and practice game for Ben's soccer. He's doing so much better though, at work pretty well full time, and physically loads better (it's just a long process which he is finding surprising even though we were warned!). Graham not really in pain at all unless someone (ie. kids)accidentally elbows his stomach - but has really bad indigestion and can't get comfortable at night and therefore sleep, kind of reminds me of pregnancy (sounding familiar, Judith?). New photos as soon as I get my act together.

Saturday, August 27, 2005 11:42 PM CDT

Sorry for no updates, everything fine, just busy with Ben starting first grade this week (finally a full day of school, we miss him at lunchtimes!). Couldn't take him to school the first morning as getting labs with Jessica, but have been going in at lunchtimes to make sure he is safe with his allergies (his new teacher is great, though he is in a split 1 & 2 grade class with only 7 first graders, might be good for him!). Jessica is doing great, her liver numbers are finally almost all within a normal person's range for the first time in her life probably! It's great. She's being a right madam at home though, particularly through the evening and worst with me of course. Everyone told me to take some time off this afternoon and go to the gym as she's always angelic when I'm not around! We now only have to go to clinic on Thurs, but still blood draws on Mon & Thurs, which will help. We've dropped another medicine dose (blood pressure) and are starting to taper the second anti-rejection med (cellcept) that we started after she had her little rejection bout. This one stays in your blood for around 10 days so it's going to be a slow process to see whether she stays stable. But it would be great to come off that one and work on lowering her prograf so that she can go out more and see people. Graham also had clinic and has been given the all clear, thank goodness. He is working from home pretty full time now and going in for some meetings. He is starting to drive short distances to see how that goes, but is not to cycle, swim or play soccer (he's coaching Ben's team starting next week, I better get my boots out!). Supposedly, it's OK to run but not surprisingly he's not very convinced about that one. Thanks for checking in on us.

Wednesday, August 17, 2005 6:20 PM CDT

Sorry for no news. Jessica started with sporadic abdominal pains on Sat which worsened on Sun night, becoming so acute that we have actually never seen her in so much pain. She kept begging me to help her which was just awful. I started worrying about my usual irrational worry, appendicitis, amongst other post-transplant possibilities and my mum and I took her to the ER in the early hours(the place is always a nightmare compounded by currently being a building site). She had the usual tough stuff on top of literally no sleep, IV w bloodraw (and they didn't tell us it was going to be an IV, I was so mad, not being able to prepare her), x-rays, ultrasounds but it was hard to see what was going on because she was full of gas/wind. We were admitted for 2 nights and just got home this morning. Turns out amongst all the horrible things that it could have been it was just a bowel blockage which I missed because she had been pooing around it (sorry for the gory details). Anyway, it's not an unusual occurrance after her surgery so I don't feel too stupid and the team said we were right to be cautious as it wouldn't have resolved itself. It had been lovely having over a week at home apart from needing my first root canal! I am halfway through what needs doing - why do these things always happen when you least need them to? Especially as I was in no position to complain to anyone at home (except my mum and dad, thank goodness)! The toothache started on the night of her biopsy a week and a half ago, stress prob, and possibly minorly better than having all my hair turn grey overnight, which might have been the other alternative. We also managed a lovely quick trip to the beach, in our first proper outing, trying to avoid germ-ridden places with lots of people. The kids had a ball but it was tough on Graham as he’s usually chief-digger but even walking on the sand was pretty hard for him. Hoping to catch up on some sleep again now.

Thursday, August 11, 2005 10:55 PM CDT

Another day of good labs (apart from one which may indicate some kidney trouble, her main immunosuppression prograf is v tough on kidneys - we'll watch and wait, it might just be a blip). So we're reducing steroids further, hurray, we may get more sleep now. Forgot to tell you all that another side effect of prograf can be losing patches of hair. Soon after we got out of the ICU her hair on one side was falling out in handfuls and she has a biggish bald patch on one side. That's the only one so far though and hidden over one side, her hair is so thick though; I'm happy it's not consipicuous (she doesn't even know it's there). She was v grizzly about the blood test this 8am, poor thing don't blame her, neither of us are early morning girls, but they got the draw first poke (first time since her line was taken out) and I'm hoping her poor veins get a chance to recover now we're only doing twice a week. Graham and Jess are roaming the local streets, it really frees up Graham's stiffened body and releases some pain and helps keep both their circulation going (G has finished his anti-coagulation shots but Jess is on aspirin and an anti-coagulation med for about 3 mos to keep her little arteries open). Have a good weekend!

Monday, August 8, 2005 11:09 PM CDT

Labs today trending significantly towards better, docs at clinic said she was perfect (let's hope it stays that way). We're all v happy and really feel a cloud of stress has lifted. Even Jess was sparkling when we got home. We'll continue labs and clinic every Mon & Thur and know ups and downs like this are normal for at least the first 3 mos. Meds are staying as are, apart from decreased steroids so she's still v immuno-suppressed, I'm avoiding going out and Ben is having limited activities (esp as stomach bug going round at the mo, can you imagine that and trying to keep 26 doses of meds down!). Just wanted to say how incredible Jess has been about her meds, some of which are truly disgusting. We taught her how to take tablets in the months preceding the transplant hoping it would help. She of course took it as a challenge and loves to show her "magic trick", often without water, to anyone who'll watch. Even the hosp pharmacy kept sending up her meds as liquids because there aren't many 3 yr olds who prefer tablets. However, when I saw the new anti-rejection drug, cellcept, was even for an adult a giant capsule I was worried she'd struggle but it went straight down first time. Then last night when she was taking her 4 prograf capsules which are smaller, she put three in her mouth at once and swallowed them straight down. She's such a star. Graham said last night that he can't believe that the transplant has actually happened, it's still very surreal. Things are still difficult but we are only 2.5 weeks post, amazing how far we've come and how much has happened. You know the miracle of all this that I never dared believe, especially on 20 July, is that I would still have my darling Graham and Jessica with me. It just seemed too much to expect or hope for in the circumstances. Every day is a wonderful day and another gradual step. I will be posting once or twice a week, unless something else, happens. Check in with us when you can and thank you all for being here for me.

Saturday, August 6, 2005 3:40 PM CDT

Home again - is rejection! Only one night in hosp but v tough stay. Jess was a trouper through multiple blood draws and IVs when nearly all her veins are shot and they needed to try again and again. She also woke up from her anesthetic for her biopsy and remembered that I told her that she would have to stay still for 4hrs on her side to prevent bleeding (when her usual tendency is to throw a hissy fit). She just always rises to the occassion and puts up with stuff I would have a problem with. It turns out that she is at the start of a rejection episode. The docs have chosen to treat with a mini steroid boost (because of her psychotic tendencies with steroids) and see what happens. She had that by IV yesterday and we're tapering at home, she is also on a couple more meds and another biggie immunosuppressant (makes her more susceptible to horrible viruses, we're being as careful as we can), called cellcept (thanks Phil, who works for Roche). Nice to be home, Jessie normal apart from mood swings, insomnia and the fidgets due to steroids. We'll be getting labs and going to clinic on Mon and having a quiet week, I hope, together. Have been neglecting Graham on here, sorry sweetie. There is a tiny improvement every day, pain still bad on and off and walking upright is difficult, but managing to be his normal self in between.

Wednesday, August 3, 2005 10:56 PM CDT

Graham's birthday and back into hosp! Today clouded by very worse labs (and missing first poke) and rush ultrasound early this morning (which thankfully showed the liver working fine). But we need to be admitted again. They were going to have Jess back into hospital today but couldn't schedule a biopsy til tomorrow so we had a temporary reprieve and at least had the day and another night at home to sleep. Jess looking fine if pale and behaving normally, no fever, but this is prob a rejection so if the biopsy confirms that we will be in for a bit of a stay (our room is booked, just hoping it's a private one again)! Don't really know what to expect, prob mass horrid meds, more steroids (we hate them) and more IVs and/or lines (we're running out of sites). Not happy but appreciated being home so much even if for only two days. Have not had long enough with Ben, I miss him so much, but we baked G's cake together today and he tries to understand. Netta, my sister, still here until weekend which has been so helpful as she has taken Ben on trips with his cousins (and done all sorts of shopping for us, thanks Netta).

Tuesday, August 2, 2005 1:44 PM CDT

We're all home! Hurray!! Left the hospital yesterday (Mon) late afternoon. So many thoughtful baskets and beautiful flowers and stuff for the kids here which they and we are really enjoying, thanks so much to you all you're so kind (everyone's asking what else to do, we're really fine just now, but would be so happy to hear you donated blood, made a donation to your favourite charity etc). Overwhelming to be home in charge of two patients, a 6 yr old who's missed his mum and 12 complicated medications for Jess (21 doses a day, yes I have made one of my infamous spreadsheets) but we're so happy and we all had a great night's sleep. Back to the hosp for labs this morning, not nice to be back there already, but they have to be taken before Jessie takes her morning prograf (anti-rejection) and we'll do labs again on Thurs and clinic in the pm (for both G & J). There is a question over her liver enzymes which are not coming down how they should, at clinic they will decide whether to do a biopsy this week to try to work out what's going on. I hope it's just a matter of rest and eating and drinking and that a spell at home will sort everything out, fingers crossed once again. Jessica looks so amazing and Graham watches with envy as she kicks her legs up in the air, he is still in so much pain but we're finally seeing glimpses of his normal self in between. We knew recovery would be a long road . . . your messages are so wonderfully supportive.

Friday, July 29, 2005 3:55 PM CDT

We’re really struggling to get Jessica’s Prograf level stable. From too high to too low, these last few days, and rejection is a big concern especially in these first few weeks (although rejection can happen anytime). Also, her liver numbers have plateaued out and aren’t really coming down to where they should. I’m too tired to worry too much right now and hope it’ll just sort itself out (Jessica has always done things her own way!). We knew there would continue to be ups and downs. My sister, Netta, arrives with her kids (Juliette and Harry) tonight, it’ll be nice for Ben to spend some time with them over the next week, and I hope I get to see them at some point. My mum says there’s bags of gifts for Jess at home, she’s bringing them in a few at a time and it’s really helping to get us through the days. It’ll also be great to have treats for her in the next few weeks at home, as she continues to recover, and I will save some as there are bound to be other hospitalizations in the next few months for infections and viruses etc, that we haven’t planned for. Thank you all so very much.

Thursday, July 28, 2005 10:26 PM CDT

My Dad saved all your caring bridge messages for me to read in the hospital today. I am overwhelmed! Thank you all so much, now I know how I got through the last week. You’ll all be so happy to hear that I am sitting writing here opposite Jessie on her bed and she’s looking just amazing; completely back to her normal self, most of her lines out, off the IV, no painkillers and has her lovely colour back in her cheeks. She’s lounging back, wriggling, playing with a ball, whilst watching a DVD, she just doesn’t do sitting still! This morning she took her first shuffling steps across half the room to Ben and this afternoon she has walked around the entire 3rd floor of the hospital. It’s quite incredible and I’m so thankful. Amazing how in the ICU things changed to the worse on such a rapid basis, up here we’re moving the right way equally fast, she’s just such an amazing girl with what she has put up with and got herself through. They are planning on letting us home on Monday, when the full team are here to assess her and also to wait for her prograf level to stabilise. The infection doesn’t seem to have materialized, the cultures are negative so the white blood cell count changes are probably just due to the steroids. I am having my training tomorrow, she will have her last drain and picc line removed before we go home and we’ll just keep the bile tube for a few weeks. Graham had his staples out today and also looked amazing when he visited us with Ben before clinic. Jessie’s wound is somehow superglued, a plastic surgery thing, so luckily we don’t have to deal with that as well. The order of the next three days is walk, eat and drink and enjoy getting back to normal life.

Wednesday, July 27, 2005 10:25 PM CDT

More good news, we’re out of intensive care. We are in a private room in the step down unit, not the regular floor, where there is still additional nursing care. Jessie got rid of 4 IVs yesterday and had a picc line put in, which was a tough procedure, took three attempts over an hour but blood can be drawn through it which is great. Her white blood count continues to fluctuate but we hope it may be due to the steroids rather than an infection. Today she is going to have one or more of three drains taken out of her stomach, Graham said that was very painful for him but she’s so tough about stuff like that. She’ll keep the bile drain for a few months and probably the picc line too. She’s also hoping to have the oxygen tubes off her face, and maybe start walking and using the toilet. It’s going to be a busy day. Big steps forward all the time now, just wish we could get her prograf (main anti-rejection med) level stable, it was sky high which they think may have caused the psychosis and she hasn’t had any for over two days now while we wait for the level to come down again. Most of her meds are oral now and she’s being so perfect at just opening her mouth and getting on with it – good job Jess! Graham happy at home with Ben keeping him busy. Al flew back to UK this morning in need of a well-earned rest, don’t know what we would have done without him. He cared for Graham, and supported me often late into the night, and made sure I got a meal a day. Thanks a million, Al, don’t know of anyone else I could have waited with while G & Jess were in the OR. And special thanks also to Jane & Emily for lending him to us.

Tuesday, July 26, 2005 1:31 PM CDT

Lots of good news, Monday. Graham went home today, what a star he has been, just 5 days after the op! Still on painkillers of course and an anti-clotting shot he has to give himself at home. And, we finally had confirmation that the hepatic artery in Jessica’s new liver seems to be working well (this had been hard to see in earlier ultrasounds and she was nearly taken back into the OR last week, v scary). Also, her psychotic episodes have virtually disappeared and it is just so wonderful to have my little girl back today. However, she has a new infection, we’re hoping it’s just one of her lines but she’s on a load more antibiotics. We removed her central line and two IVs but put in another one, which was tough as we’re running out of sites. If the infection does not clear tomorrow, they may clean her out in the OR on Wed. I really don’t want to have to move back in that way, she keeps saying she wants to go home now, and today said “I hope my wish comes true”. Her lung is slightly worse so we need to work hard at deep breathing, blowing and coughing, not easy when it’s not the most comfortable thing for her to do just yet. We’re moving on one step at a time.

Sunday, July 24, 2005 11:43 PM CDT

Graham possibly home on Monday! He's done so well but is still in a lot of pain and pretty weak (pls no visitors until I post here). He saw Jess for the first time today, first time disastrous as she was having a really bad time and needed me to give her respiratory therapy, but the second time she was out for the count. Jessica has been on a rollercoaster of problems, nothing majorly serious but still very worrying and things just change so quickly. One of her many drugs (prob the steriods but we're trying to work out which) is making her have psychotic periods with hallucinations esp at night. Most of the nurses, who are just fantastic, have never seen anything like it and she's keeping a large team on their toes. She still responds best to me though so they watch through the windows until I just can't cope anymore or her oxygen goes down too much. On Sat night they finally put her in an adult bed so I could sleep with her which is against their rules (there are sleep rooms down the corridor but I'm barely managing to leave her to go to the loo so was getting exhausted). We are also trying to manage her oxygen levels which drop dramatically whenever she's distressed, high blood pressure and high heart rate and dressings etc. Part of her left lung has also collapsed which we need to work on with breathing exercises (not easy with a psychotic 3 yr old covered in tubes and dressings and IVs!). All these problems mean extra medications which in their turn can cause more problems so today I feel a little overwhelmed by how much there is to overcome just to get out of intensive care. Thanks for your thoughts, pls keep them coming it gives me strength which I need right now. Monday will give us news on how her new/Graham's old liver is doing, think positive thoughts to it pls.

Sunday, July 24, 2005 9:55 AM CDT

Graham out of intensive care on Thurs night but had slight fever. Doing well on Fri, sitting up and starting to walk a little. Jess doing OK in pediatric ICU, having a tough time on cocktail of meds and steriods - more news soon. Keep sending positive thoughts to keep her new liver working and all those arteries and stuff flowing well.

Thursday, July 21, 2005 1:21 PM CDT

Sorry for delay due to computer problems, everyone's as comfortable as can be expected. Joanna's message: Well it's 8:15pm on Wed and it's been the longest day. Graham and Jessie are both doing well. Graham was in surgery for 6hrs. Apparently his liver looked great, they took part of his left lobe and it was out for only 1hr befor being transplanted into Jess. Jess was in surgery about 8hrs, her old liver was very hard and cirrhosed. Both lost a minimal amount of blood and did not need transfusions. Graham's brother, Al, has been waiting with me all day and has been a great support. Graham has been awake a little but in extereme pain. He may come out of intensive care tomorrow. Jessie will be sedated tonight. Thanks for all your thoughts over the miles, pls keep them coming over the next few weeks.

Tuesday 12 July, 2005

Welcome to our webpage. One week to go! My parents arrive this Thurs and Graham's brother next Mon. We're so lucky to have their support and your offers of help. We're set for now but my friend Cammie, who generously gave blood for Jessie's tx yesterday says there is a major shortage of blood in the Bay area, only one day's supply. Give blood if you can and talk about organ donation with your family if you haven't already done so.

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