History

Journal History

Sunday, April 6, 2003 6:05 PM - Aussie Time!

FINALLY HOME!!!

Well, our last email was perhaps a little too presumptuous in assuming that all would be Ok to come home last Monday, because on Monday morning, Riley decided to spike temperatures and ended up keeping us in there for another week. They did more blood cultures, urine and stool
samples and the works... in these type of cases you have assume the worst and treat it just in case so she was treated as though she had somehow contracted a bug with arange of antibiotics and regular monitoring. The temps continued for a couple of days and she was off colour for about 2-3 days and very sleepy and cuddly but we waited to
see what happened after the antibiotics. All of the tests that they did kept coming back negative so yesterday they took her off the antibiotics and waited to see if she spiked again. Luckily for us she didn't - so we have finally made it home - on a very short reign though... but that is OK as long as we can settle back into our home environment.

When Riley came into the house she didn't know what she wanted to play with first so she got all of her babies (at once) - you should have seen her arms full of them and then she went to get her prams and bring them out into the lounge room. Then she went back and got her 2 dogs and
brought them out and then every toy possible arrived. The tent (her little play house) went up inside the house again and she used this for a house for all of her babies.

She was shuffling up and down the hall in such a rush and was so excited. It was so great to see at last.... Of course because of all of the excitement and the energy that she had burnt, she was buggered by about 2 pm and slept for 3 hours.

You don't know how great it is to have made it this far and have her home again. She has fought the battle of her life to get here and we are so pleased to see her so happy and smiling again and finally home. We were in hosiptal for 7 weeks in the end.

Anyway, I will get to all of your emails and I will respond over the next few days. Please be patient with me as I still have regular hopsital visits, a mountain of drugs to prepare each day and I also will be taking bloods and dropping them off 3 times a week.... so life will still be hectic but at least not as restricted as being in hospital.

Talk to you soon

Denise, Craig and Riley Kate Belcher

Saturday, March 29, 2003 08:23 AM - Aussie Time

Sorry it's been so long since we have sent you an update but Riley has been doing it really tough and we haven't been game to leave the hospital just in case.... so we couldn't send emails and this one will have to be a very quick one as we have to get back to the hospital but
thought I'd just let you know how things are going.

We have had a rotten couple of weeks and Riley has fought hard to get on top but she has made it and things are looking much better now. It started with some pretty sever temperatures and fevers up to 41.5 degrees for about 7 days. These seemed impossible to control and panadol
did nothing to knock them - she had shudders and shakes with them when they were rising and then vomited when they were at their peak. Then she had problems with some major fluid overload which knocked her off her feet - she was about 3 kg over her normal weight in fluid which is a lot
for such a little girl and this just seemed to make other problems arise. Because of the fluid it caused everything to swell, she couldn't open her eyes for a few days because they were so puffy, she had some pretty severe fluid in her stomache and in her liver. Her liver was so large that they started to test further for Venal Occlussive Disease
which can be fatal. She got fluid on her right lung and needed oxygen to get her stats up and she also needed a catheta to drain the fluid in the bladder as her bladder had blocked from the swelling as well. She was in
some terrible pain for 3-4 days as she wanted to go to the toilet but couldn't. This swelling just added further to her fluid problems. In the end they were saying that we would probably have to be transferred to the Intensive Care Unit and put her on a machine like dialysis which
actually drained the fluid from the blood, etc...

Because of the fluid on her lungs they almost operated on her to see what was going on down there and to take a sample so that they could treat in just in case it was a bad infection. The respiratory doctor at the hospital was fantastic though and decided to give her a further day
to see what happened and because nothing got worse they left the operation. She eventually cleared the fluid on her own and her lungs were clear again.

Because they started her on some drugs to clear the fluid, her potassium got zapped as well and she needed to go onto a potassium infusion as well as the several other infusions that she was on. Usually when patients go onto a potassium infusion they get transferred to ICU because it is very risky and can affect the heart but somehow we managed
again to stay in the ward but had to wear an ECG heart monitor to keep an eye on things and not go to ICU. Some very scary days and we seemed to scrape out of ICU by the skin of our teeth.

After all this, Riley's heart rate also started to drop really low and this was a concern as well so after ECG's and heart echo's she was cleared of any major problems there as well. We have just jumped over one hurdle after another and somehow she has fought her way through. We
now are battling high blood pressure as well which has been a problem for a while because of the drugs that they have her on and the fluid overload but we are getting there.

The good news is that she is doing much better now and is back to talking again, moving around, standing up and she is laughing again and getting cheeky so she must be feeling better. We had blood taken at the start of the week which was sent away for engraftment studies and we got the news on Friday that Riley has 100% donor cells showing in her blood which is just fantastic - the best that you could get. We only hope that her bone marrow shows a similar pattern now. They tried to take some marrow last week but she didn't have enough cells to test then. Her immune system is picking back up again and she has a good dose of Graft Versus Host (GVH) which is good because it means that her new marrow is fighting the old marrow. We now want it to settle because a little is good but too much is not good. They actually think that her fluid overload was part of GVH in her body now and they have started her on
steroids to help keep that and the rash that she has all over her body under control. In the last few days she has come up in a tiny little blister like rash all over her body which when it breaks turns to dry skin - very weird but not itchy or anything so that is good.

Anyway, I must go and get back to the hospital. So please take care and thanks heaps for the positive thoughts, prayers and the white light that people are sending her. It seems to be working so please keep going.

Will talk to you all soon we hope.

Denise, Craig and Riley

Saturday, March 08, 2003 11:31 AM (Aussie Time)

Hi Everyone

Find below an email we have sent to all of our friends and family,
possibly a bit too detailed for all you experts out there, but hope it
gives you an update of where we're at.

Thanks

Craig, Denise & Riley

Just ducked home for the first time since going in for transplant and
decided to send a quick update to you all. The 4 days of Total Body
Irradiation went really well which surprised us. We thought that 8
General Anaesthetics in 4 days for 1-2 hours each time would take its
toll on Riley but to our surprise she bounced back so well from each one
and played happily in between as though nothing had even happened. The
fasting for 4 days was difficult as she kept on asking for her bottle
and for food but we managed to keep her distracted and get through OK.
Instead of our fears that the radiation would have an immediate adverse
affect on her mental development she did the opposite and started to be
stimulated during this week and began to talk heaps more and say words
that she had never attempted before such as grasshopper, dinosaur,
dragonfly, kookaburra, cockatoo, captain feathersword and the like which
we were very impressed with. She also began to talk in long sentences
and basically never shut up. Whatever word we would say she would make
an attempt at saying it and did really really well. She talked and
talked and talked all day long and at night we were still talking and it
took me until about 10:30 pm each night to convince her that it was time
for bed. She also became very assertive and started t boss us all around
and tellus what we could and couldn't do. It was during these days of
isolation that we were informed that our donor was not the donor that we
had originally been told about from America but rather a donor from
within Australia. This was a shock and we were a little taken back and
didn't quite know if this was good or bad news. But we were assured that
this donor was just as good as the American donor and was actually
better because the donor was within Australia and we had easy access to
them. It was till a 6/6 match for her. This meant that the marrow could
be harvested the same day as transplant which was a good thing. So we
decided to accept this as a positive and move on to the next stage.

We then moved into isolation and started the chemo and anti-rejection
drugs. One of the anti-rejection drugs that has obviously caused some
severe reactions in the past required the nurse to sit with us for the
entire time it was being administered and do general observations on her
every 15 minutes. This drug was administered twice a day for 4 hours at
a time so we had the company of the nurses for quite a long period of
the day. 8-12 in the morning and 8-12 at night. Fortunately Riley was a
little trooper again and had no reaction to the drug or the chemo and
continued to play and talk and talk and talk. You would never have known
that she was even on any drugs at the time. So it came to transplant day
and Riley was still eating and playing and talking and we were quite
shocked as we thought that for sure that by then she would be feeling a
little worse for wear and need to rest and sleep. But no, not Riley
Kate!!!!!

She ate a jam sandwich and a yoghurt the morning before transplant and a
packet of twisties just before the bone marrow arrived. She was playing
happily and having a great day. The bone marrow finally arrived about
2.30 pm. It had been harvested that morning so it was nice and fresh and
ready to run. For those of you who don't know how a bone marrow
transplant actually happens - it is like a blood transfusion where the
marrow runs through the patient's central line and into the patient. It
is not an operation or an anaesthetic and happens while they are awake
or asleep. It doesn't have a filter like blood transfusions do and just
runs into the patient as fast as they can get it in. It takes about
20-30 minutes depending on the quantity of marrow that is being
transfused. Riley had about 165 ml which was a reasonable harvest. It
was interesting that after Riley played and talked all morning that when
she had to sit still for 10 minutes while they hooked up the marrow to
her central line she actually fell asleep. Quite ironic that she would
sleep at the most critical moment but nice too so that we could all just
take it all in and have a bit of quiet time to say a little prayer and
send her positive thoughts and lots of healing white light. She awoke
about 10 minutes into the transfusion and started to vomit which worried
us but I think it was the twisties that did it as it was bright yellow.
This was short lived and she resettled and slept for quite a while then.

It was a exciting and scary all at once for us. At last we were there
and had that life-saving marrow inside her but scary now as to what her
body would do with it.

She continued to stay on a high for about 2-3 days after transplant and
then she took a dive. Her bottom broke down and the nappy rash that was
slightly there during the radiation had turned nasty and began to
blister and get very angry and she was rolling around on the bed in
pain. This was due to the radiation and it was similar to a burn. I have
never seen anything so nasty looking and she was in agony with it. We
got her onto some morphine and regular panadol and she seemed to cope a
lot better even though she was still in immense pain every time we
changed a nappy or with bladder or bowel movements. She also began to
spike some temperatures and have some blood pressure medication for the
effects of one of the drugs that she in on that causes high blood
pressure. We are still battling the bottom issue and we are now 8 days
post transplant but the doctors don't think that this will heal until
she her counts start to recover. As for the blood pressure and
temperatures - we are also still monitoring them and treating her for
both when she needs it. She pretty much slept for 3-4 days on and off
and had little bursts of about 15-30 minutes where she decided that she
wanted to play but really didn't have the energy to. She is also
retaining a lot of fluid so she is in need of regular medication to get
rid of the excess fluid. She is about 1.5 kg heavier now than when she
went in and it is all fluid. So the doctors are keeping a close eye on
this.

Yesterday Riley had a bad reaction to a platelet transfusion and started
to spike a really high temp and her feet turned blue. It got everyone
rushing around and the doctor sat with her for about 15 minutes after
they had given her some medication for the reaction to make sure that
she was OK. She was fine but slept for about 3 hours after that. She
awoke last night like a new child. She was full of energy and wanted to
stand up on her own and play with her babies and the play-doh and the
animal farm that we bought her. She was having a great time and then
proceeded to sing and dance to her singing and dancing Barney doll. She
was having a ball and really didn't get tired until about 10 pm. We read
books and played with her sticker books until she finally crashed.

This morning she awoke and was full of smiles and cheekiness so she was
getting back to the Riley that we know and love. She has pretty much
played all morning and laughed and had fun. It is quite ironic because
her counts are at the lowest that they have been today and yet she is
feeling much better. She has no neutrofills and her white cell count is
less than 0.01. Now that we have hit rock bottom we can only go up so we
live in hope that this will happen quickly so that she can feel like
herself again. When her counts start to recover we will have to tackle
the next hurdle which is the Graft Versus Host Disease where her body
will decide whether it accepts of rejects the marrow and to what degree.
So please keep the prayers coming. She is doing really really well and
I'm sure that is because she has so many positive influences in her life
and so many people from all over the world praying for her.

Talk to you all soon

Denise, Craig and Riley.

,Wednesday, December 18, 2002 8:29 PM (Aussie Time)

Since the last update, Riley has completed 2 rounds of chemo. One round of chemo in November which included 5 days of intense chemo and then about 3 weeks for her counts to fall and recover to a stage suitable for the next round of chemo which was in December and again included the same treatment protocol.

During round 1 of chemo Riley did great � she needed a number of blood and platelet transfusions (mainly platelets) but other than that came through with flying colours. She was full of beans and as cheeky as ever throughout the chemo and the week after. Towards the end of the second week following chemo when her counts had dropped off she became neutropenic (no immune system) and spiked a few temperatures so was admitted to hospital � she ended up with swollen gums to the stage that her teeth were barely visible so getting her to eat and drink was a real challenge. This only lasted about 3-4 days and then she picked up considerably and was sent home full of beans again.

When she was back up with her counts and feeling great we went through round 2 of chemo and again she did really well. She was a little sicker this time � a few more vomits and a bit miserable (mainly about being couped up in bed I think). We are now at the stage that her counts have dropped again and we are on the verge of another hospital visit � many prayers are being said that she stays well enough to keep her out of hospital for Christmas. After round 2 of chemo Riley had a significant reduction in the size of her spleen and liver which is great news - it means that the chemo is doing the right things. Now is the time that we need to decide whether her spleen gets removed or not in preparation for transplant which is scheduled for February.

Riley has slowly been losing her beautiful auburn hair and it is quite thin now - we expect that the majority will go in the next few weeks and she will be a shiny top for Xmas. We are surprised that she has kept it for so long to date, so she has done really well.

Today 18 Dec, we had fantastic news � it looks as though they have found a donor for Riley for transplant. It was getting quite stressful when every person that was a low resolution match kept coming back not compatible when they did the high resolution testing. I didn�t realise how much pressure we were under to try to fall pregnant again and hopefully have a match for Riley until they told me they had a match and then I felt a huge weight was lifted off my shoulders and burst into tears. It�s amazing how stressed you can be and not even realise it. The person that they have found is a 6/6 match and is a young male donor which is great. We are just so happy it is hard to describe. We will have all confirmed after they send blood here and analyse it to make sure that the information they have been provided is correct - this will probably not happen until after the new year but from the information provided to date it looks like it is a match. What a great Xmas present. We have a very positive feeling now that Riley can beat this disease - she has just been given that lifeline.

If anyone is reading this and is not a donor please, please consider it because you could help another family, and maybe even your own one day by a simple donation of bone marrow which gets replenished automatically by the body in a very short space of time. To save someone�s life would be an amazing achievement to have done in your lifetime and especially that of a child who has so much living yet to do.

As for the pregnancy side of things - all went pretty well in Sydney with the Pre-Implantation Genetic Diagnosis IVF process - from the 14 follicles that I produced through the stimulated cycle they extracted 13 eggs, and of those, 8 were suitable for the special fertilization procedure that we�re undertaking. Of the 8 that were injected with sperm, 4 fertilised. We prayed hard that all of these embryos would continue to progress to a viable blastocyst stage, and that one of those embryos would be a match, but we were sadly disappointed when, from the 4 that fertilized, 1 didn't divide on day 1 and a second stopped dividing on day 2. The last 2 kept kicking on until the last crucial day when 1 gave up and stopped dividing so that left 1 embryo suitable for testing. As you could understand we knew the odds of this one being a match were extremely slim but kept up the positive thoughts anyway only to be told that it did not match - it was only a partial match for Riley.

After thinking long and hard and an emotional morning of decision making we decided to implant the last sole embryo anyway and see what happened. It had come this far and if it was meant to be here then who were we to deny it life. If it was successful then it was meant to be here and if it didn't then we do round 2 of the IVF PGD program. It was a type 1 quality blastocyst so it had a good chance but with the stresses of having Riley back in hospital not even 18 hours after implant it was inevitable that the odds of it surviving were slim.

As it turns out, I had a bleed 9 days after implant and it is was determined that the implant had been unsuccessful, so we continued on with plan B and decided to go ahead with another cycle of IVF and see if we could produce that match for Riley this time. The only hiccup was that the day that I went for blood tests before starting the next cycle I had a miscarriage. Apparently I had been pregnant all along and the miscarriage was that of a 6 week pregnancy. You can only imagine how shocked we were to learn that I had been pregnant all along and that the pregnancy had now been lost.

The day after the miscarriage we found out that they had found a match for Riley, so the disappointment of losing a baby was overshadowed by the great news that we now have a very good chance of saving our daughters life��.

Life goes on in the Belcher household and we look forward to a happy and healthy xmas and new year.

Guess what our new year resolutions will be!!!???

Saturday, March 7, 2003 11:27 AM (Aussie Time)

Saturday, March 08, 2003 at 11:15 AM (Aussie Time)

Saturday, September 07, 2002 at 08:00 PM (EST)

Well, two months have passed since we began Riley�s treatment and Riley has completed 2 courses of the FTI drug. After the first month we had some fantastic results and Riley�s counts were within the normal range so Craig and I opened a bottle of champagne (maybe a bit prematurely). During the second month we have not been quite as confident. Her counts had started to change with her white cell count rising slightly and the platelets plummeting rapidly. This was a concern for us and we couldn�t understand why. It seems that has come down with a cold though so we are unsure if this is the instigator of the changes in her counts. We are yet to see our doctor and get his opinion on that issue.

At the moment, we have one week off before we commence 2 months of chemo. We are still trying to determine if this treatment protocol that we are following is the best treatment available for this type of leukaemia or if there is a better treatment. How do we ever know when so many different treatments have been administered to different kids with this disease. I guess it�s a case of what works best for each child.

I have officially finished work as at 25 October � by taking a Voluntary Early Retirement so now all of my efforts can be concentrated on Riley�s treatment and on fundraising for the Leukaemia Quest which I have joined as an entrant.

Our tests with Sydney IVF have come back and they believe that they can offer us a test that can test the embryo prior to implantation with a very high degree of accuracy, so we are hopeful of a pregnancy with a sibling match for Riley. Unfortunately, if Riley�s treatment goes as scheduled the new baby will arrive too late for her transplant but we are still going ahead because we know that there is a high rate of relapse in JMML cases and that she may need second stage treatment down the track. While we are praying that Riley will not need second stage treatment, unfortunately it is a cold hard reality that we have to consider.

Riley is scheduled for transplant in February 2003, but at this stage there has been no bone marrow donor found on the Australian registry and a search is underway on the International register. We have started an email campaign asking people to be tested and consider going onto the bone marrow register and we believe that this email campaign has had a very big impact. Our theory is that if it doesn�t help Riley directly then it may help someone else who needs a donor.

That�s about it for the updates at this stage. We visit the doctor again on Wednesday next week so may have more information at that stage.

Take Care

Denise, Craig and Riley Belcher

Saturday, September 07, 2002 at 08:00 PM (EST)

When doctors suggested that our daughter Riley could have a rare form of leukemia, we refused to believe it. She has always been really well� never been really sick, never had infections, had a couple of minor colds but no chest infections, was full of beans and was anything but listless and lethargic. So we decided that the alternative option that they gave us in that it could be viral must be the answer. But after 5-6 weeks of tests and waiting for results our worst fears were confirmed. Riley has JMML.

The only indictor of any symptoms that surfaced was a rash on her legs, which appeared about 8 weeks ago and looked suspiciously like meningochocal (?). We rushed her to emergency and the doctors on duty also thought they were treating that deadly disease and administered antibiotics immediately. When other symptoms of this disease never surfaced and test results tended to clear her of this disease they then kept us in hospital for a week under suspicion of a number of other contagious diseases. We were isolated for a week whilst tests were being performed and went through an emotional roller coaster whilst one disease after another got ticked off the list.

The unfathomable thing was that she was not sick and had no other symptoms other than this rash that disappeared after a day or two in hospital. After a week doctors decided that they perform a bone marrow test as a precaution even though they thought that she did not have leukemia. We waited anxiously for the results and had a personal visit from the hematologist a few hours after the test to tell us that she was in the clear and that no blast cells had been found and that she could go home provided we came back on the Monday for follow-up blood tests. We arrived home and were in the process of having a hug and reflecting on the emotional turmoil of the week when the phone rung. It was the hematologist telling us that we had better come back to the hospital and have a chat.

That was when our nightmare begun�.. 5-6 weeks of further tests where no-one could confirm one way or the other what she had�� but we were finally given a confirmed diagnosis of JMML. Denise�s father had leukemia 10 years ago (CML) and survived a successful bone marrow transplant. Our dog had died from a rare form of leukemia and we have known 3-4 other family and friends that had either fought or died from leukemia. So it didn�t seem fair that we have to go through the emotions and the prospect of such dramatic treatment all over again and especially not with our precious little girl. But there is��

We have now just commenced on the American Trial Protocol Treatment for JMML and Riley has had 2 days of the drug Farnesyl Transferase Inhibitor with no side affects as yet (fingers crossed).

The treatment protocol for Riley includes the administration of this oral trial drug for 2 months, chemotherapy for 2 months, removal of her spleen, radiation, and bone marrow transplant. Riley has no siblings and a search of the bone marrow register is being undertaken at the moment.

As parents, the hardest part of all of this is that we feel that we have absolutely no control over this situation and while we just want to hold her tight and make it all better for her... we can't.
So, because we had been thinking of having another child anyway, and because we also need to believe that we are taking some active and positive steps to do our best to save our child's life and increase the odds of her transplant success, we have commenced Pre-implantation Genetic Diagnosis through the IVF Program in Sydney to try to have another baby that would be compatible as a donor for a bone marrow transplant for Riley. We have been to Sydney, Australia for the first stage of this process and met with the geneticist, scientist, fertility specialist, counselor, etc from Sydney IVF and the DNA testing that is required to undertake this process is being undertaken as we speak and we are expecting results from Sydney within the next week. Fingers crosses that the DNA testing is a success and that we can proceed with this process. We realise that it is unlikely that this sibling will be able to be assist with Riley�s transplant no-one can definitely confirm dates and if things get held up then we might just make it in time. If not, then we will have another beautiful child at the end of the day and it Riley needs second stage treatment then we can consider that at that point as well.

Anyway, as you can understand, life is extremely hectic and difficult for us at the moment and it is probably only about to get worse over the next year or so but we remain positive and confident that our little girl will use that willpower and stubbornness that she has displayed over the last 18 months and fight this disease. We believe that if she fights this disease like she fights sleep then she will breeze through treatment. We hope and pray for a positive result, not just for Riley but others that also have children who are fighting or who have fought this disease.

Take Care

Craig, Denise & Riley Belcher

Click to subscribe to jmml_support

Saturday, September 07, 2002 at 02:38 AM (CDT)

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----