Posted 10:36 AM by shirley johnson
5/4/2002
The diary has not been updated for a couple of days. This is because Adam,s condition deteriorated and he was transferred to the intensive care unit of the hospital. RevJim and Christine have obviously been with him at every possible moment. Unfortunately I am not so conversant with the medical terms, and will try to explain the current situation in laymans' language.

Due to a possible infection, Adam's temperature rose, and he got diahhorrea, which in turn led to dehydration. His condition worsened, and he developed breathing difficulties. Efforts to provide further medication intravenously proved very difficult, as his veins were collapsing (an affect of dehydration I am told). He was then sedated, and given assistance with his breathing.

The latest update I received (7.30 a.m. today) indicates that his condition has stabilised slightly, and that he will remain sedated until the hospital can perform a further scan. As soon as any further information is available I will post it here (throughout the day, rather than daily during this crisis).

Several friends of the family are either already in Halifax, or heading there now, to assist with the decoration of the new house. This is a source of further worry for Christine & Rev, as Adam cannot move in until the renovations are complete, so any further help would be greatly appreciated.

Posted 5:51 PM by shirley johnson
Latest news !!
Ive just spoken to Rev & Christine. Adam is currently having a further scan and is still under sedation. There is no significant change in his condition since this morning. However it does seem that this is a similar episode to that which Adam encountered in January. He is still receiving assistance with his breathing, and this will continue until the sedation is gradually withdrawn, when his own responses can be better gauged.

Posted 10:10 PM by rev jim
This morning we took Adam to hosp for his 2nd round of CLASP chemo. As the nurse brought in the IV we stopped her and asked to see the doc before any chemo was started.
His consultant wasn't there, she's away at a conference (she is chairperson of the paediatric oncology group of the British Standard Haematalogical Society) So we ended up talking with Dr.Mike Richards, he was ok, and gave the standard spiel about finishing the course regardless of the LP result. Not totally satisfactory but at least we asked, and so it will be noted.

After work, I went to price up tiles for the bathroom, it's a small room, 6x7ft and a low ceiling... works out at 120 quid for the walls and 30 quid for the floor. OUCH!

So I'll pick those up tomorrow (as soon as I rob a bank).
I went down to the new house and painted, I finished Adams ceiling, and did the master bedroom too, then I did a bit of filling cracks in the plaster. I'm knackered and covered in paint, so a shower and bed for me.

Today has been "eeek! How much?" day

Posted 11:16 PM by rev jim
Update, 11:15pm
Christine just called from the hosp, Adams temp has gone through the roof, 39.
The doc is coming to look at him, and will probably start him on the antibiotics shortly. This means at least 5 days in hosp. bummer.

Posted 6:34 PM by rev jim
We got a good news, bad news kinda day today.

The bad...
Adam is neutropenic, very neutropenic, this means he has to stay away from any source of infection, the counts are really low indeed:-

WBC - 0.1 (less then 1.0 is neutropenic)
NEU - 0.02
LYM - 0.03
MON - 0.00
EOS - 0.00
BAS - 0.01
ALY - 0.00
LIC - 0.01
====
RBC - 2.83
HGB - 9.7 (less than 8 means a blood transfusion)
HCT - 27.5
MCV - 97
MCH - 34.2
MCHC - 35.3
RWD - 19.8
PLT - 23 (platelets)
MPV - 10.2
PCT - 0.023
PDW - 29.3

He had a transfusion of platelets before the lumbar puncture to avoid a big bruise. They ordered plates, and Christine asked if it was a mixed bag, they said yes, so she demanded a single donor bag, they complained but got the single donor bag. Adam had a reaction to platelets last time, and according to other parents this is because its a mixed donor bag.
His white cells are on the floor, lowest I've ever seen them, I hope he dosen't go febrile cos that means a stay in hosp and high dose antibiotics (he had his "event" while on high dose antibiotics and chemo). Christine was talking to other parents whose childern are on the same chemo regimen, and they say the next 8-10 weeks will be bad, he will get a temp and need to stay in hosp, he might get bleeds (no platlets) and its a dangerous time. Thats the bad news.

The good news...
We got the results from last weeks lumbar puncture, CLEAR totally! which is brilliant news as far as it goes. No sign of the disease, if this weeks LP is clear he's back in remission.

This throws up some questions. The clear result was taken BEFORE the new chemo regimen was implemented, Adam was on minimum chemo at the time. This begs the question "Why did they start the new intensive block, which will make Adam really ill, AFTER a clear result?" It seems to me that there was no need to give Adam this new hight dose cytarabine/cytosine & aspariginase chemo. putting Adam (and us) through a couple of months of rollercoaster ride...
I am going to hosp with Christine in the morning and WILL speak to his oncologist about this turn of events.
Another Question is "How come his LP results showed an incredible amount (too high to count, greater than 200,000) of blast cells one week, then very slightly less the next, then totally clear?" Something very odd is going on, very odd indeed.

I am going down to the new house in a few minutes to paint ceilings, Christine is staying with Adam. I'll work my anger out on the painting (should get loads done)

Today has been "Good news, Bad news" day

Posted 10:41 PM by rev jim
Adam had a good day today, the local supermarket had a blood drive, and have a display with leaflets etc. Christine and Adam played ambassadors handing out leaflets and talking to people, they got a good response. Christine targeted the asian shoppers, as the need for ethnic minority bone marrow donors is a priority, there are a few asian kids on ward 10.
My work asked/told me that i will probably have to work next weekend, oh dear, looks like I'm going to annoy my boss.
We went down to B&Q to price up flooring, found some nice stuff, we have a tame pensioner over the road we can borrow (pensioners get a discount at B&Q). We also picked up some paint and stuff. Then went down to the new house to do more stripping and sanding. Adams room is ready for paper and paint, the other bedroom is clear of paper, the biggest problem is time, the whole house needs redecorating, and we cannot move in until that is done, Adam cannot be exposed to the dust created while decorating. So we are going to have a word with the neighbor because he's a pinter and decorator by trade, and get a quote, we will buy the paint, paper etc. It might save a lot of time.

Today has been "time" day

Posted 10:36 PM by rev jim
This morning Adam had a rash, and itching... so a call to Ward 10 and they said to bring him in to clinic.
A mild allergic reaction to "something" and sent him home with some piriton and calomine lotion. His temp is fine, but his counts are dropping fast, very fast. He is still quite energetic so the red count can't be that low.
He's due back in clinic on Wednesday, and then in on Thursday for more chemo.

The house is coming along, the housing officer called in and Christine showed her the bits still to do, plastering and some electrical work, also the tiling isn't finished. The biggest problem is time, there isn't any.

We hope to move this weekend, but it all depends.

Today has been "allergy" day

Posted 8:47 PM by rev jim
Went to hosp at about 9am, Adam had finished his chemo, and had his aspariginase injection, and was almost ready to go. The doc had a look at him and let us come home, we got out of the hosp about 11am.

Adam is ok, a bit tired and has the runs (possible side effect). His temp was up a bit too, but some calpol brought it down. It's too early for a neutropenic infection, but I expect he will get a temp in the coming week.

Adams sister Helena came over to help with the new house, it took 3 of us (and 3 kids) over 3 hours to strip half of one room... I don't think the previous occupants ever stripped wallpaper, just papered over.

Hopefully this week, the electrician will finish doing the sockets in the kitchen, and the immersion heater and central heating wiring. As some of you know, I'm an electrical design engineer, and a trained electrician (just rusty) I estimate 1 day to finish, but knowing how local authority workmen work, it could take 3 or 4 days.

This week Christine wants to paint the woodwork in Adams bedroom, and finish stripping the paper in our bedroom and the bathroom. I will do what I can after work. If the workmen are done by the weekend, we will try to move then. Which reminds me, I must call Blueyonder/Telewest (my ISP) and cancel eveything, and call BT to get a phone put on.

Today has been "home" day