Blog | frasergo.orghttps://www.frasergo.org/blog/2009-05-14T21:50:47+00:00BlogMore details from Prof2009-05-14T21:50:47+00:00david/blog/author/david/https://www.frasergo.org/blog/2009/05/more-details-from-prof/<p>After <a href="http://frasergo.org/node/131">yesterday's good news</a> that James's bone marrow has been given the all clear, we had an appointment with the Prof who is in charge of James's treatment where we were able to hear more fully about the bone marrow test and analysis. We appreciated that both Prof and James's pediatrician seem to understand how difficult this is for parents emotionally!</p>
<p>He explained to us that although chemotherapy for children with <a href="http://en.wikipedia.org/wiki/Acute_lymphoblastic_leukemia" title="Acute lymphoblastic leukemia">ALL (the kind of leukemia James has)</a>, the main remaining problem is that even after years of treatment, some still relapse... this is because even after the treatment, some residual diseased cells can still remain, which can then multiply... a lot of research is currently going into trying to distinguish these cells before a relapse occurs, but this has not yet been successful.</p>
<p>So when they saw these strange cells in James's bone marrow they wanted to check as much as possible to see if there was any evidence that they could be diseased. They consulted with colleagues at Red Cross Hospital as well (they see a lot more paediatric cases), and concluded that the evidence all points towards them being normal cells. Importantly, they look different to the original leukemic cells that James had, and they show no signs of abnormality.</p>
<p>So the conclusion is that James is doing as well as he possibly could be under the circumstances. The risk of relapse remains, and the next expected high risk period is when he finishes his maintenance chemo in just over 18 months time... it was a bit disconcerting discussing this possibility again, but that's the reality!</p>
<p>We also discussed James's liver - his liver enzymes keep on fluctuating; while they aren't at a dangerous level, they're not going to increase his methotrexate dose unless they normalise more. This explains why James seems to not want food at some times but not others.</p>
<p>We are so grateful to God for sustaining us through the past few weeks, and we're trying to take a deep breath to gather our strength for the reality of the road ahead. Next week we're going away for a long weekend which we're really looking forward to!</p>
<br class="clear" />Relief - James is still clear2009-05-13T19:39:59+00:00david/blog/author/david/https://www.frasergo.org/blog/2009/05/relief-james-is-still-clear/<div class="image-attach-body" style="width: 100px;"><a href="http://frasergo.jackdaw.local/node/131"><img alt="James the superhero" class="image thumbnail" height="75" src="http://frasergo.jackdaw.local/files/images/P1210829.thumbnail.JPG" title="James the superhero" width="100" /></a></div>
<p>Today we heard from James's paediatrician that she got the final report on his bone marrow test - and he's totally clear! The <a href="http://frasergo.org/node/129">cells that they saw</a> on the previous test turn out under closer scrutiny to be <a href="http://www.merriam-webster.com/medical/hematogone">Haematagones</a>, apparently also known as <a href="http://en.wikipedia.org/wiki/Hemocytoblast">Haemocytoblasts</a> - basically they're immature cells, but they're not cancerous, so he's officially still 100% in remission! They're also not caused by a virus. What a relief it was to hear that news! We'll have our appointment with the Prof tomorrow where we'll be able to discover for more details, but it was nice not to have to wait till then!</p>
<p>We went out to the Spur afterwards to celebrate... thank you everyone who's been praying and writing and sending messages, it's been quite a crazy 3 weeks of waiting! We are feeling exhausted, but very very grateful!</p>
<p>PS - just to clarify, he does still need to carry on with his chemo as planned, but this now means everything is going according to plan, and he hasn't relapsed, which was the big worry.</p>
<br class="clear" />Bone Marrow test yesterday2009-05-06T07:52:14+00:00david/blog/author/david/https://www.frasergo.org/blog/2009/05/bone-marrow-test-yesterday/<div class="image-attach-body" style="width: 100px;"><a href="http://frasergo.jackdaw.local/node/129"><img alt="Getting ready for bone marrow test..." class="image thumbnail" height="75" src="http://frasergo.jackdaw.local/files/images/P1210865.thumbnail.JPG" title="Getting ready for bone marrow test..." width="100" /></a></div>
<p>James had his bone marrow test yesterday. He was incredible bouncy just before hand, but got knocked out pretty quickly by the anaesthetic!</p>
<p>It was really nice that there was another family sharing the room with us. Their daughter was having her last check-up bone marrow test five years after finishing her chemo for leukemia! Her parents told us that they also found "funny cells" in her bone marrow a few times during her treatment, but that they gave extra treatment and they went away (although it prolonged the treatment)... That was encouraging.</p>
<p>James's pediatrician explained a bit more: in the last test they found some <a href="http://en.wikipedia.org/wiki/Lymphoblast">blasts</a> - abnormal cells - in his bone marrow. As I understand, they can't necessarily tell from that whether they're cancerous or not - but they regard them as a relapse if they reach a certain proportion (above 3%) of the bone marrow. They're wanting to investigate more to work out what they are, and this bone marrow biopsy will enable them to to a lot more detailed tests.</p>
<p>James's white blood cell counts and platelets were normal, which seems to indicate that this is probably not a full-blown relapse (they would expect them to be affected if it was).</p>
<p>We're going to see the Prof next week Thursday to hear what they find, but we'll probably hear before that if there's a serious problem ...</p>
<br class="clear" />Extra Bone Marrow Test for James tomorrow2009-05-04T22:35:57+00:00david/blog/author/david/https://www.frasergo.org/blog/2009/05/extra-bone-marrow-test-for-james-tomorrow/<div class="image-attach-body" style="width: 75px;"><a href="http://frasergo.jackdaw.local/node/126"><img alt="Picture of James and Charis with Granny and Granddad and the boats he made" class="image thumbnail" height="100" src="http://frasergo.jackdaw.local/files/images/james_and_Charis_with_granny_granddad_and_boats.thumbnail.jpg" title="Picture of James and Charis with Granny and Granddad and the boats he made" width="75" /></a></div>
<p>Last week, James had a bone marrow biopsy, which he has every three months. The hospital called us last Friday to say that they had seen something funny in his bone marrow, from the biopsy and they would like to do more tests. So, on Tuesday he had tests on him for TB of the Bone Marrow, CMV virus and Glandular Fever. The tests have all come back negative and so the doctors have said that they want to do a bigger bone marrow biopsy than usual on James to see what is going on with him. It is tomorrow morning at 8am. We would love some prayer - for peace and grace and healing. We have been trying not to react too much until we know for sure what is going on.</p>
<p>Some other news...</p>
<p>James loved school last term but coming back after the Easter break he has been incredibly anxious about it. It hasn't helped to have lots of public holidays and some time off for medical things which have made it very stop-start and not given him a chance to get used to it again. We've found this very emotional - his teacher has been fantastically helpful.</p>
<p>We have had my parents here this week and we have had a lovely time together. It has been such a blessing to us (Grandad did his famous making of the boats for the kids! Charis is very proud of her pink boat!!) We all felt so sad dropping them off at the airport this evening!</p>
<br class="clear" />Joys and blows2008-12-26T07:23:10+00:00david/blog/author/david/https://www.frasergo.org/blog/2008/12/joys-and-blows/<p>This last few weeks it's felt as though emotions ranging from joys to griefs have been running hand in hand...</p>
<p>We had a <b>week away with David's family</b> in Vic Bay. The first time we've all gone away together since we all got married... it was really special to all be together.</p>
<p>Unfortunately we all seemed to contract a <b>stomach bug</b> while we were away, one by one (with the except of Andy and Louise and Mia) - on the Friday night James was throwing up half the night, and again once on Saturday evening; Danielle had it on Sunday afternoon (very relieved that we all made the trip down OK); Charis threw up on Sunday night, and David and James's stomachs have both been out of order most of this week... (they finally seem back to normal now)</p>
<p>On the way back last Sunday we heard the <b>shocking news</b> that <b>Tori</b> (one of James's few fellow child patients at the hospital) had a massive cardiac arrest and <b>died</b>. It left us all reeling... she had an infection and was put in ICU but then seemed to be stabilising - this was totally unexpected and hard to understand.</p>
<p>James still seemed very lethargic after he was over the worst of the bug so Danielle took him back to the paediatrician - his blood tests showed that his <b>liver function is abnormal</b> again, and his white blood cell counts were low. So they've taken him off all his oral chemo for this week (to help his blood recover before his intravenous Vincristine due next week) and his anti-convulsant as well, which should help us see if the liver is being affected by either of those drugs.</p>
<p>James also had an <b>ultrasound</b> of his liver on Tuesday morning and it showed no structural problems which is good news. And Charis and Danielle both went for blood tests at the same time so it was a family outing!</p>
<p>In between all of this we were <b>celebrating Christmas</b>. We had a great time on Christmas morning with the kids reading through the story of how Jesus was born - right from the angel appearing to Elizabeth until John the Baptised baptised Jesus. Charis is convinced that <i>Jesus died on the cross for our fins</i> - you know, the things on a fish like a tail - although she is gradually admitting that that's a joke.</p>
<p>Danielle and I are both feeling quite <b>exhausted and stretched</b>. It's felt like there are months that are easier and harder and this last month or two has definitely been harder! We had some good talks while we were away about how to recharge in times of stress - both of us get our energy from keeping our eyes fixed on a big vision of God - but didn't expect to need that battle to intensify straight away! I've been reading <a href="http://www.desiringgod.org/ResourceLibrary/OnlineBooks/ByTitle/1593_Dont_Waste_Your_Life/">Don't Waste Your Life</a> by <a href="http://www.desiringgod.org/AboutUs/JohnPiper/">John Piper</a> which has been a refreshing and challenging stimulus.</p>
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<br class="clear" />Blood test results for James and Charis2008-12-11T22:16:56+00:00david/blog/author/david/https://www.frasergo.org/blog/2008/12/blood-test-results-for-james-and-charis/<p>It's been quite a week in the Fraser household, featuring <a href="http://frasergo.org/node/117">James's liver issues</a>, David going to Joburg for the day on Wednesday and Charis being taken for a precautionary blood test to make sure she doesn't have leukemia!</p>
<p>After <a href="http://frasergo.org/node/118">visiting the gastro-enterologist</a> to check out what's been happening with <b>James's liver</b>, he recommended discontinuing his anti-convulsant (Epilim) to see if that would help the liver recover. But when they got the blood test results the next day, they found that his liver condition has already improved remarkably! Basically all but one of the enzyme levels were back to normal, and the one that wasn't had improved a fair bit as well. James's paediatrician expects that it should come back to normal without changing his drugs, so there's a bit of a debate now as to whether to stop the Epilim or not - his doctor thinks it was probably a transient viral hepatitis (but not the standard Hep A or Hep B)</p>
<p>Since Sunday <b>Charis</b> has been complaining of <b>pains in her legs</b> and on Sunday particularly she was falling over a lot. With those being some of the symptoms that James had in his legs that led to the leukemia we were obviously nervous! So on Wednesday when James had his appointment with his doctor, Danielle asked her what we should do about Charis. She said for our peace of mind it's best to test, so they went straight off and had a blood test! Charis handled it brilliantly and didn't even cry and James was a great support with all his experience of having needles!</p>
<p>We got her blood results later that afternoon and Charis is <b>clear</b> which is great... the only abnormality was that her white blood cell count was even lower than James's which has been low - this apparently means that she's probably had a viral infection recently.</p>
<p>Charis has been struggling a lot and it's hard to tell how much is emotional and how much is her not being well so it helps a bit to know she has been sick. James has also been quite discontent and struggling - he seems to have perked up a bit as his liver seems to have improved... We do wonder if we've all had a virus and that's why we haven't been well. Whichever way we've felt very stretched both physically and emotionally! Discipline with sick and struggling kids feels like a hard balance to get right...</p>
<p>On the positive side both James and Charis have grown up so much recently - Charis is talking away and her vocab is incredible. James is getting all responsible and helpful and ready for going to preschool next year!</p>
<!--break--><br class="clear" />Bone Marrow results2008-11-16T23:16:21+00:00david/blog/author/david/https://www.frasergo.org/blog/2008/11/bone-marrow-results/<p>James had his <a href="http://en.wikipedia.org/wiki/Bone_marrow_biopsy">Bone Marrow Biopsy</a> (which happens routinely every 3 months) and <a href="http://en.wikipedia.org/wiki/Lumbar_puncture">Lumbar Puncture</a> (and monthly intravenous chemo!) last week. The operation went smoothly, although he felt a lot more queasy than usual and ended up throwing up all over the car. David had to go straight off to conduct an interview after dropping us at home ... so it made it interesting for him with the state of the car!!!!) We got the results on Tuesday, telling us that he is still clear from leukemia! The Prof (his doctor in charge of his treatment) explained to us that we are <i>exactly where you should be ... but you've got a long road left to walk!</i> These were honest, but sobering words for us and reminded us of the continued need for prayer in many dimensions! We thank God that He is our strong foundation, never shifting or 'wobbled' by events or difficult happenings!</p>
<p>This test marks 9 months of James's maintenance Chemotherapy which is a scheme that lasts for three years. The point is to try and avoid a relapse of the leukemia by giving a long period of chemo that will hopefully eliminate any lingering cancerous cells (the white blood cells permeate every organ in the body and if a few are left around they can start multiplying again). At the end of the three years they stop the chemotherapy to see if this has been successful. It takes a while to assess the results with children as they have young developing white blood cells that are more difficult to distinguish from the cancerous cells. It's great knowing that they use experts from different institutions to confirm what they are seeing.</p>
<p>Life is less intense than in the intense phase of chemotherapy! James hasn't had to go into hospital for infections if he gets a temperature as he used to, but we still have to watch them closely and he gets put straight onto antibiotics if he has one (he just spiked a temperature tonight so we gave him Panado and are in touch with the doctor...) ... we're still aware of the seriousness of the situation but not in as in-your-face manner as before.</p><br class="clear" />James onto maintenance therapy - Celebration2008-02-29T21:14:32+00:00david/blog/author/david/https://www.frasergo.org/blog/2008/02/james-onto-maintenance-therapy-celebration/<p>Haven't updated this blog over the last few months - we had to return from Japan because of James being diagnosed with Leukemia in August... and have since then been going through fairly intense treatment with him.</p>
<p>Well ... the great news is that we found out today that James' bone marrow is free from leukemic cells!!!!! Wooohoooo!!!! We are officially on Maintenance treatment now. This means 3 years of:</p>
<p>- monthly intravenous chemo<br />
- five days of steroids every month<br />
- daily oral chemo tablets<br />
- lumbar punctures and bone marrow biopsies every three months to check how things are going</p>
<p>They are also hoping to take his line out on Friday!!!! This will mean injections for James again but will reduce the risk of infection in his line.</p>
<p>The professor, James' doctor that we met with this morning, said that these next three months are particularly crucial in terms of relapsing because of coming off the more intensive treatment. For all of you pray-ers ... please pray that these months are free from relapse along with the next years and the rest of his life!!!! Thanks so much for everyone who have been praying away and also for all the amazing messages and kindnesses! We have been blown away!!!!</p>
<p>We went to the Spur today, a restaurant that James absolutely loves, that we have been unable to take him to because of his low white blood count. He loved it and we all celebrated our socks off!!!!</p>
<p>We have to watch how his body responds to this next treatment phase, before making decisions about him going out in big groups of people etc. It looks like he will be able to go to church though and to school even. (although we haven't decided whether to send him to playschool a few mornings a week yet. We're just going to wait and see how things are emotionally and physically!) He will probably be able to eat a bit more normally too, although we also have to wait to see if we can take him off the diet, depending on his white blood count.</p>
<p>What a change this is and what a milestone for us. We are blown away and haven't quite processed this wonderful wonderful news yet but wanted to share it with all our friends!</p>
<p>Thank you Lord!!!!</p>
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