Baby Greenhouse Journal Nick (Jacob 6yrs & Louise 4yrs, Henry 16/03/08) |
I owe BGH a huge debt of gratitude for that time. Surely on of it's finest moments, at a time of one of my worst?
Jacob is currently playing Fifa 10 on the Wii. He will probably flit back outside in a minute for a kick about. He is going to watch his beloved Bristol Rovers tonight with his dad. Jacob adores football. Jacob will never know how amazing he is.
Fast approaching the 5 year anniversary of diagnosis, can hardly believe it. 21 months off treatment too.
All good.
He is now on no regular medication. He is totally normal
We're coping ok, always at the back of our minds, but not half as paranoid as I thought I would be.
In less than 6 months Jacob will be off all treatment. The excitement is huge and we have some big celebrations planned, but the fear is huge too. What if it comes back? My biggest worry is his age. He has coped so well from ages 3 - 6, but I know he would find it so much harder, the older her gets. It terrifies me, I have to think positive, but that niggle will always be there won't it?
My children are really rather special, both of them have coped with so much, and they're pretty normal really - amazing!
Watched the news with interest last night as they think they have made a breakthrough in how they will be able to treat leukaemia, I had heard it before as Jacob's cons was of that school of thinking anyway. Makes me wonder though, what triggered Jacob's cancer. He had no illness beforehand of note. And how long had he had it before diagnosis? Not long I think, maybe a week or so, he would have been a lot more ill otherwise. That's what I think anyway. We'll never know. It's been nearly 3 yrs, it's hard to think of a time without cancer in our lives.
Jacob is still going great guns. No hospital stays and all treatment going to plan. We have an end date of 14th June to look forward to
He seems to suffer from the effects of the chemo more as he gets older. He often needs a day off of school a few days after the vinc as he gets tired and achy, although saying that, this month he managed just fine. He is so good at having it done, still the youngest patient at the hospital without a wiggly He had a flu jab this weekend and there were loads of comments in the waiting room about how small he was, and how brave. Ha, if they could see what else he has had done to him!!
Everything is being put in place for the stem cell collection when this baby is born.
Life is good
He's enjoying school and is looking great, he has to spike his hair every morning, it seems a million miles away from when he had none!
Matt is running the Bristol hlaf marathon for CLIC this year, if you feel the urge you can sponsor him here http://www.justgiving.com/mattyhicks
I knew about leukaemia, I knew the basics. I admit I thought it meant certain bone marrow transplant. I know it doesn't mean that now, but I also know a whole lot more. Too much, I wish I ddn't need to know it, I wish I didn't have to see the inside of a peadeatric oncology ward. But I'm also quite glad I have seen it all. I'm glad to know some very special children and some very special caring professionals. It hasn't ruined our lives, it's hindered it and added stresses, worries and sadness. It's also enriched it. It's a funny old game.
Jacob is 5 and to anyone looking in looks quite normal. He is extremely special. He is my little boy and he's done so mcuh fighting and he probably doesn't even realise. He's amazing.
He has vincristine tomorrow, so that will be followed by steroids. Hoping they make him sleep a bit more, talk about an early riser (4am)!!
Had some very sad news this week, a lovely little girl who I met the first week in the hospital died from neuroblastoma. Amelia was 4 and one of the most gorgeous children I have ever met. She is firmly in my heart and I am so sad for her family.
Wiggly going really was the best thing that ever happened.
We go to Eurodisney next w/e, courtesy of the Starlight foundation. To say we are excited is an under-statement!
He did spend last Saturday night in hospital with a high temp, but we got him out in less than 24hrs - a record. Another good thing about not having a wiggly, you can be damned sure it's not a line infection!
He has his 4wkly vincristine shot on Thurday, along with the 5 days of steroids as usual. His B'day is on Saturday, I don't think anyone else will get a look in on his cake ![:]](/smilies/laugh.gif){kind=small}
He had vincristine on Thursday just gone, so is on steroids at present, he also has his 12 weekly lumbar puncture on this coming Wednesday.
He's started school and loves it so far, every morning he rushes in He looks so well, and with no wiggly, he really is just like all the other children
He's doing fine now, but it already a tiring slog for us all and we still have over a week to go...
So, we got to see a whole new department at the hospital, it made a bit of a change!
But, his bloods miraculously came up, he has re-started on the chemo and he has been back at playgrp this week.
Bit of a rollercoaster this, you know?
We got Jacob out of Bristol childrens hopsital on Saturday. Set off on holiday on Monday at about 11am and by 2pm he was settled into a ward in Barnstaple hospital, he spiked a temp and was unwell on the way down.
So, he ended up in there until late Weds evening. We had to take him in Thrs & Fri for IV antibiotics too, each one taking about 2hrs.
We were meant to come home Friday, but booked into a Travel Inn that night to extend it a bit. We managed to get to the beach on the days he was out, and we were lucky with the weather, but, well.
Pretty confident it is nothing nasty and he should be home tomorrow morning
We go on holiday in just over a week. Only for 5 days to North Devon, but we cannot wait, we really need a nice break all together with no blood counts or appointments. Try and live like a normal family for a few days
Next one in another 12wks
His bloods were low last week, so there was no playgrp for him, but they had gone back up again yesterday, so he's gone back today.
He has to have his monthly vincristine next Thursday and his steroids that go along side it.
He looks really well and continues to cope really well
I'm doing the race for life on Sunday - eeeeek!
Think it was just a cold/virus as no tests came back with anything nasty. Got him home yesterday.
His counts were all good, and we were out within an hour or so. He has been on steroids since Thursday which is always a testing time, but he has the last dose tonight. Hopefully we will manage to stay out of hospital for the full 4 weeks until his next shot!
Oh, and our buyers pulled out and we lost the house we wanted, so back to square one. Still, worse things happen at sea............
Oh, and because we decided we didn't have quite enough stress at the moment, we've decided to move. Accepted an offer on ours yesterday and had offer accepted on the house we want.
Jacob is very well in himself, his hair is growing back and is so soft - adorable He is back at playgroup and is loving it. He has his bloods done once a week and touch wood, we shouldn't have to go back to hospital until 23/03, we will have had 4wks off
He started back at playgroup this week and has settled straight back in, I think he's finding it tiring though.
I am attending a meeting next week being held by a new user group for services to children & young people with cancer in the SW. It sounds really interesting and I'm looking forward to being involved and maybe give something back.
Hb : 11.5
WBC : 2.97
Pl : 382
Neu : 1.81
He is in still in remission and everything is going to plan
We still have a looooong way to go, we are currently on week 37 and treatment ends at the end of week 164. There are many more medicines to take, and lots more drugs to be administered, plus an LP every 3 months, but we should be at the hospital a whole lot less.
It feels great, it really does. We are so proud of him and how he has coped, he's a true hero
He was so poorly and was hardly awake and spent 3 days on fluids. Finally got him out on Friday 23rd, only to get a call to take him back that evening as his potassium was so low. He had a 4hr IV to top him up, and was prescribed the foulest medicine ever to boot. Had to take him in Christmas eve for bloods, but got Christmas off Had a lovely time and both kids were spoilt rotten. Back in Boxing Day for bloods and took him in Weds 28th too.
If his bloods are good enough (doubtful), he will resume chemo next Wednesday. His hair is getting rather patchy again, but he is fine otherwise
It's been a bit of a slog, as there were some very sad things happening around us at the hosptial, which is hard for everyone 
We're all exhausted, as the last 3wks has been hard to say the least. So, I'll say ta ta to 2005 and await what 2006 brings.........................
Really hoping to get out this w/e. To add to all the drama, Matt has severe D&V last night (had to call my M&D at 2am to get Louise), so I'm on pretty much full time duty until Sat morning at least.
They decided that he needed to stay on the IV antibiotics as they did not think the oral ones would be sufficient. We were allowed to bring him home for most of the day, and the last 2 days we were allowed out from breakfast time to bedtime, with the CLIC nurse coming out to give him meds Still a bloody hard slog though, and I'm glad it's over. We actually ended up in there the same amount of time as when he was diagnosed
Only person not pleased however, is Jacob. He's totally institutionalsied and I had to drag him out of there every day and then he spent all day asking to go back. When we were discharged, he said "I know, I can move my bed in here"
He is so well, you wouldn't know there was anything wrong. Bloods have fallen though, so all oral chemo is suspended as we are going away tomorrow for 3 nights and they didn't want to risk him getting ill when we are away.
So, holidays tomorrow, we all need it
Upshot is that they wanted the line removed as they think this bug is hanging around. They were going to remove wiggly early next week, but the cultures grew a very nasty bug, so he went on the emergeny theatre list today and wiggly has now gone. He'll have 2 more days of antibiotics on a slow driver, and then he should be able to go on oral antibiotics and come home Monday. He was looking at being there until next Friday, so that is a welcome relief.
It's been unbelievably hard as Matt had an operation on his knee just a week ago which had left him unable to walk. So, I have been doing all the nights at the hospital and the bulk of the day shifts. I had to arrange people to look after Matt as well as Louise He has insisted on staying with Jacob tonight though, so I am at home. I hope they are OK (nurses will be looking after Matt more than Jacob!)
I asked about bird flu, and was totally reassured that there is no immediate risk to Jacob. He will be given a flu jab as a matter of course, and they recommend Matt 7 I have one, but that happens every year. Wasn't worried before, and still not worried now
Hb : 11.3
WBC : 3.57
Platelets : 94
Neutrophils : 2.34
Hb : 11.4
WBC : 8.3 (wow!)
Platelets : 446
Neutrophils : 6.16 (wahey )
He's doing really well, completed his 5 day steroid course on Sunday, his cheeks are just starting to deflate! He got tired half way through Playgrp yesterday, but had a cuddle with one of the teachers and then was fine again. Next bloods next Tues
He's very well in himself and has a head of stubble, but very soft stubble
Hb : 11.3
WBC : 1.91
Platelets : 243
Neutrophils : 0.76
Sally came yesterday to take bloods and his platelets are on the low side, so we have to be aware of increased bruising or nosebleeds. He'll have bloods done again Monday, so hopefully they will have risen by then.
This w/e is the Bristol Half Marathon. Matt (DH) was running, but has damaged his crutiate ligemant and was booked in for surgery this week. His op is 21/10 (just what we need eh ). I know some people from BGH had very kindly sponsored him as he was running for Leukaemia Research and his company are doubling it. Our (ultra fit!) next door neighbour is taking Matt's place and running on behalf of us & the charity, but if anyone wants to retract their sponsorship, I totally understand, just let me know. Matt's sister is also running it and has got a small piece in the local paper http://www.thisissomerset.co.uk/displayNode.jsp?nodeId=150802&command=displayContent&sourceNode=150790&contentPK=13244404
Hb : 10.9
WBC : 1.26
Platelets : 43
Neutrophils : .58
It was taken again yesterday and they had dropped again, so he had a transfusion this morning. All totally normal, but very frustrating as he is so well in himself.
Next being done on Thursday, so hoping they have risen then.
?
The CLIC nurse is coming today & tomorrow to give more chemo and then this intensive block is finished Thank God, it's been very tough. Next week nothing happens, and then he starts on Maintenance for 8 weeks which only includes 2 hospital visits
His bloods have all dropped, which was to be expected, but I'm going to ask them to test again tomorrow as he has been invited to 2 parties this w/e which I would love him to go to. I am also hopeful that he can re-start playgroup next week. He is so 'well' and it would do him the world of good to get back to normal for a while
Hb : 9.2
WBC : 1.03
Platelets : 162
Neutrophils : 0.7
Got in at 11.30pm last night.
Took him back again this morning for more chemo and antibiotics.
Very very tired. Jacob is fine Liek it never happened!?!
The infection should clear up with the antibiotics, and he is certainly very well and back to him normal self. We were discharged at 1pm, but Matt has just taken him back as he needs hom next antibiotic at 6pm, they do it on a slow driver. I then have to take him in every day until Thursday for the rest of the course.
His counts are good enough to begin the next bit of chemo too. So, on Tuesday he will have a Lumbar puncture and the spinal chemo, and another chemo which will be infused over 4 hrs. Then we go back Weds for a different one again, but this is just a push through wiggly. He then has this one for a further 3 days. Then, next week, it follows that pattern again, but without the 4hr one. With me ? Basically it means a lot of hospital trips!
Counts are:
Hb : 9.6
WBC : 2.5
Platelets : 425
Neutrophils : 1.01
Hb : 11.3
WBC : 1.63
Platelets : 288
Neutrophils : 1.16
So it looks like we are on track to carry on with treamtment next Wednesday as planned Also means we can go out & about which is great as we are all a little stir crazy!
Jacob has been shaking a lot, especially his hands. He is also feeling the cold a lot more, gets very achey legs and tired very easily. Ali assured me these were all normal side effects. His hair is really quite thin now and is still coming out, I'm gald I had shaved it quite short.
He finished a weeks course of steroids yesterday There are no more for about a month I think. These have increased his appetite loads and we've had severe mood swings. One think I am grateful for though, is he never gets aggressive, which seems quite common, we just get *very* bad moods.
Think that's it for this week, will update next Weds after treatment.
Hb : 11.4
WBC : 0.21
Platelets : 239
Neutrophils : 0.02
WBC & neutrophils are the lowest they've ever been, so he's very prone to infection at the moment.
His treatment went well today though, and he started another weeks course of steroids. We're not due in now until Weds 7th Sept, as long as his counts are good enough. So, need lots of vibes that platelets are 75> and his neutrophils are 0.75> by then, otherwise treatment is delayed until they have risen.
He's still looking really well though. Last night I went to pick a bug out of his hair and a large clump came away with it. So, I quickly gave him an all over grade 3 (we'd let it grow back since last time). It's coming out, but it did a bit last time, but he never lost it all. We'll see
We were back in again today for vincristine and doxorubicin which was fine except for the waiting. The chemo comes over from the oncology centre, and although linked by a corridor, it still takes forever. Still, Jacob was kept entertained by Clare the playworker. He designed his own T-shirt, made a jointed snake and made a feathered bird! We also finally got back his teddy (thanks Dons, it's the one you gave him ) and ted has a wiggly too. It's great, there's saline solution in it with red food colouring and we have the syringes, so we can actually draw off and inject blood - very good fun
Jacob acted the real seasoned professional when a 5yr old girl refused to have her sats done. She was in the invstigative stage and was waiting for her first LP to get a diagnosis and she looked terrified, as did her parents. Jacob let the nurse do his BP & temp etc to show her it was fine and then she let them do it He also told her all about wiggly, which may have freaked her out !
Saw consultant who told me Jacob is doing really well, is still very much in remission and has every chance of staying that way
Just got his bloods and they are brilliant:
HB : 11.6
WBC : 5.06
Platelets : 244
Neutrophils : 4.55
Was expecting them to have dropped like a stone, so very chuffed, we are free to go out & about Have booked a playdate already for Monday And not got to go back until next Thursday, so more
He had asparaginase in his leg (the painful one), but was brave as ever and got over it soon enough. We had to wait for an hour after, but were home within 2hrs of leaving, a record I think!
Saw Amelia up there who we were on the ward with. She has neuroblastoma which is a nasty sticky cancer, but is doing so well. SH ehad chemo to shrink it, an op to remove it and has just had a bone marrow transplant and looks so well Also saw Hamish who was also on the ward and has the same as Amelia, but is behind her in terms of treatment. He's just had the op, and will soon have the BMT. please think of them both as they have a very hard battle to fight. Saw Kumi aswell. Another one on the ward with us. She is about 6 or 7 and is fighting her 3rd cancer. This one is probably caused by the radiotherapy that helped cure the last one She's had a large section of her jaw removed, and they won't be able to do anything to it until her late teens, she looked so poorly
I've been saying it all along, but it's reminded me yet again. There is *always* someone worse off than you and I feel very humbled by these brave kids and their brave parents. It makes me realise what is really important. A lot of things we post about on here just seem so trivial right now.
Today he had the vincristine & doxorubicin. The latter took about an hour through Mr Wiggly and was fine. It was a pinky/orangy colour and Jacob thought it was hilarious when his wee matched!! He had a bit of a dodgy tummy earlier, but not sure if that will continue or not.
Also saw a consultant which was useful. The results from his last MRD (minimal residual disease) were indeterminable, a bit like a dodgy smear, just inconclusive. This is quite common to happen, so we have to wait for the results from the one he had yesterday now. Because of this though, he won't be put forward to a clinical trial that is being held to determine if levels of chemo can actually be reduced. I'm actually quite relieved about this though, although on a selfish level it would have been a lot easier. If the latest MRD does come back positive, his treatment will be reviewed and the level of chemo upped - fingers crossed for a negative.
She went through side effects of the latest drugs. One of the drug he had today is heart problems, so he has to have an ECHO next week and another in a month or so. Liver problems is another possible side effect from a different drug, so enzymes will be monitored. Both problems are rare.
So, that's it 'til Saturday.
HB: 11.4
wbc: 2.51
Platelets: 251
Neutrophils: 1.47
Brief rundown on the next 7 weeks:
3 x Lumbar punctures and spinal chemo (done under general). Had plenty of these before and no adverse reactions as yet.
1 x asparaginase injection in his leg. Horrid and hurts like hell
3 x doxorubicin. IV chemo given over a 1 hr period. Never had this before.
3 x Vincristine. Had loads of this, makes his legs ache.
2 x 7 day courses of steroids. Hunger and weight gain kicks in around days 4/5, mood wings from day 1
1 x Cyclophosphamide. IV chemo given over 4hrs. Never had this, likely to make his hair fall out.
8 x Cytrabine. IV push given in 2 four day bouts. Never had this.
2 week course of Thioguanine. Given orally. Never had this.
It all kicks of with a general tomorrow for a lumbar puncture and a shot into his spine. Am hoping that he stays quite well, but don't know how he will react to it all really. His counts will drop like a stone as all these drugs are immune suppressents, so we'll be pretty housebound again, much like we were for the first couple of months.
Feel like crap. He is so well, and to make him ill again is just another cruel effect of cancer 
Onwards & upwards................................
HB 11.1
WBC 2.63
Platelets 214
Neutrophils 1.59
He took the last of his oral chemo yesterday as they bring them off it a week prior to starting intensive chemo to ensure bloods are good enough to start. But his bloods are already good, so they should be nice & high at the beginning
He's been so full of energy and totally fine, he didn't stop at my brother's wedding on Sunday and finally burned out around 11pm!
Have been in contact with a family in the next village to me, through www. postpals.co.uk . Daniel has just started on 2yrs of maintanance and goes to the school Jacob will start at next year. His dad has told me how good the school are, so that's a nice relief, to know the school are used to this kind of thing
Plan to enjoy this last week of 'normality' before it all goes mad again
HB 11.4
WBC 2.86
Platelets 315
Neutrophils 1.44
He's had a bit of a cold, but has seemed OK with it, just normal really. The boy's doin' good
As she put it 'we can do as we please for a week'. It's such a fab feeling
HB 11.5
WBC 5.82
Platelets 394
Neutrophils 3.7
Jacob finished playgroup last Friday and I think he'll be about a month late going back, judging by his treatment plan. I'm so pleased he managed to get in a couple of weeks of the summer term. The teachers were so pleased with him and said his confidence had grown so much and he had endless energy and hadn't lost any of his spark
Please check out www.postpals.co.uk and send a card or note to a poorly child if you can
We also got the new flowsheet for the intensive stage of treatment, which starts 10/08. It's not very nice, but a lot better than I though, so that's a relief. Not got to go back in 'til 10/08
I resigned yesterday from my Saturday job in a farm shop! Want to spend more time as a family
And Louise has her MMR today at 10am, I didn't take her the other week as there was some uncertainty if it was safe or not. Seems it is, so off we will go.