New Line

Friday was a rough day. On Thursday night Kay eventually fell asleep on me, but when she woke on Friday morning she was yet again extremely upset. She did everything she could to delay the moment of departure to Nijmegen. This was pretty hard on both Marion and I as we have to be the Force Majeure whilst our hearts ache with our own fears and echoes of Kay's.

Kay was operated on in the late morning. She spent around 90 minutes in the operating theatre whilst a new and larger line was placed in her body. The surgeon decided to remove her original portal as well. A bone marrow sample was taken for another MRD measurement - a surprise to us - and she was given a spinal chemo. She recovered fairly fast and eventually was allowed home on Friday evening instead of Saturday morning. When she got home I have to say that she was in pretty good (mental) shape and has remained so all weekend. The child is so strong and adapts to new circumstances so quickly, I continue to be amazed.

She spent Saturday morning lounging in our bed watching TV, which is a) usually not allowed in our house and b) completely abnormal for Kay. But by lunchtime she was up and around, albeit holding her left arm in a defensive position. By Sunday she was largely back to normal, awake early and active, using her left arm carefully. On Sunday afternoon the results of the spring junior tennis competition were announced and Kay was confirmed as the winner of her pool.

This is such a rollercoaster ride.

Kay wins her tennis competition

The Bubble Bursts

Kay is inconsolable.

Operation Tomorrow

We have more or less reached the end of the quiet period. Tomorrow Kay has to be in Nijmegen for an operation to install a second line into her body. Unlike her portal this is an external line, meaning that hygene and maintenance become an issue and she will no longer be able to sport or enjoy a bath. The operation involves a general anaesthetic, so she will be allowed home on Saturday, hopefully.

We haven't yet told her about the operation and, in particular, its consequences. She is certain to fly into a rage when she learns that she can't sport or bath. And so far she has done a great job of avoiding the oncoming nightmare, but in the light of this development she won't be able to do that quite so effectively.

Marion & I are sure that there's been a diagnostic error somewhere: how can a child that is so tough, fit and active possibly be in need of a bone marrow transplant?

Definitive Date Set

The definitive date for the start of Kay's bone marrow transplant is 9th of April. The transpant itself will take place 10 days later. On the 9th Kay will be admitted and prepared. She can then come home on 'leave' for the weekend, the treatment starting on the Monday morning.

This is two weeks later than we had expected but does allow us a little bit more time to prepare ourselves. On the other hand the tension is already high and rising, which is not helped by this delay. Kay is pretty short tempered and does not want to have the subject of the BMT raised or discussed. She's focussing on staying busy and keeping her head down, I guess.

Fantastic!

It has been an amazing weekend for Kay. Yesterday she played hockey, away and in the rain. She scored 7 goals, with her team winning 12-5. Today she completed her last two matches in her club's spring tennis tournament, again in miserable, soaking rain conditions. She won both of them, meaning that she has won 5/5 and, I expect, will finish at the top of her pool. What an incredible performance for a child who had a vincristine push last Tuesday, a drug which is know to weaken legs and cause instability in the lower leg. She's also been on dexa since Monday, for five days.

We are so proud of her!

Someone, Somewhere (in summer time)

Someone, somewhere is getting ready to donate their bone marrow to Kay. This person will undergo a procedure which will involve bone marrow being taken from out of their pelvis and, I believe, a stay of a day or two in hospital, not without some discomfort and risk. This person doesn’t know to whom their bone marrow will be given, just that a life depends on their philanthropic deed.

Just think about this: this person is donating to Kay their stem cells, the very essence of their physical being. To save her life. Can there be a more wonderful, selfless act?

I am in awe of this person. I have no idea who they are, where they may be, but nevertheless I’d like them to know that there are a lot of people here, led by Marion and I, who want to thank them from the bottom of our hearts, from the depths of our souls.

May they live a long, healthy and peaceful life.


Your comments are most welcome...

Provisional Date Set

Yesterday (Friday) a meeting with The Professor to hear the full technicolor details of the bone marrow transplant. He explained to us why the BMT is necessary, what treatments will be applied and how they are intended to work and what their possible side effects could be. The good news is that the donor is an extremely good match, 9 out of 10 measurement points match and the 10th is a pretty good fit as well. To get technical this means that they can risk leaving the donor's T-cell lymphocytes in the transplant. If the match was less good this would cause graft-vs-host problems, but because the match is so good a graft-vs-host reaction can be managed. The advantage is that the donor's T-cells will attack any cancer cells remaining in Kay's system, thereby increasing the chance of a cure.

We heard that a provisional date of 8th April has been set for the transplant itself. This means that conditioning will begin 8-9 days before this date, thus we can expect to be living in hospital from the end of March for 6-10 weeks, depending on how well Kay recovers.

Just to rub salt into the wound, yesterday Kay played her first match in the club's tennis tournament for children and WON! I can’t get my head around this idea.

To add to the bizarre nature of this life, I’m sat on the Philips Innovation Campus in Bangalore writing this while I wait for my next meeting. I have no idea how normal life can co-exist with everything else that’s going on. But it seems that it does.