A Month has been and GONE!

Today (1st October 2007) Reid commences Cycle 5 of his chemotherapy. So much has happened over the past month and I am sorry that I have not kept this page up to date. No doubt though most of you reading will have heard all the ups and downs we have experienced recently but just to refresh your memory (and mine) I will go through it all.
We returned to RBH on the 30th August for a chest x-ray and blood tests, then at 9am on the 31st August we commenced cycle 4 of chemo. As you know it was thought Reid had Chickenpox...but after three Doctors inspected what was left of his spots it was confirmed that he did NOT have Chicken Pox. Dr tim Hassall said it was more likely Coxsaci Virus...Hand Foot and Mouth! I was filled with a mixture of releif and anger...and deciced to deal with these feelings later.
Reid was really well during cycle 4 and Mum and I were very surprised at how well he handled the chemo. River fire was on and our room had a perfect view over the Brisbane skyline for all the fireworks and the BIG F1-11 Dump and burn! It was planned to do a Stem cell Harvest after this cycle so Reid had a small insuflon (like a small canula) inserted into his leg so I could give him GCSF injections daily for the next week. This was a harrowing experience and I seemed to get just as upset as he did. However we did get better and handled the whole thing in our stride....eventually. On the 9th August we were admitted into Hospital in preparation for the Vascath insertion. This is a small tube that was to be inserteted into Reid's neck and is used to filter his blood for Stem cells. However Reid spiked a temp of 40 degrees and over the next few days developed extreme Mucositis in his stomache, and osephargus. So once again we missed the opportunity to have a Stem Cell Harvest. To add a bit more drama to all the proceedings, Reids blood cultures grew a small Bacteria so if they had gone ahead with the Stem Cell Harvest then they would have had to through all the cells away as they would have been contaminated. We got out of Hospital Saturday 15th August.
16th August - Reid had an Echo cardiogram on his Heart
We now had to go to Plan D.. as Dr Tim said meant "Don't Worry!. The insuflon was inserted again and Reid and I commenced another four days of GCSF injections. (These injections are used to stimulate the Bone Marrow to producing Stem Cells). We started these on Friday 21st.
Monday 24th Reid had a GFR test, this is a kidney test - All wen Well.
Tuesday 25th Reid had a Bone Marrow Harvest under General anesthetic (Plan D). We were in Day surgery and they withdrew 15% of Reids Blood supply from his Bone Marrow in his Pelvis, then spun the blood to seperate his stem cells from the red blood cells then they gave him back his Red blood cells. This took a whole day, but Reid handled it really well and the Stem Cell count was very high. Lissa, Sam ans Sophie arrived mid afternoon, thank goodness as this was Reid's main concern when he came out of the anaesthtic. We went into hospital at 7am and we got out at 6.30pm.
Wednesday 26th Reid had a CT Scan on his Lungs and a MRI on his Leg.
Thursday 27th-We didnt go to the hospital for a whole DAY!!
Friday 28th - Lissa and the kids and Dave and I went up to see Dr Tim for the results of all the tests.
1.GFR went well Reid has no probs with his Kidneys
2.Echo Cardigram went well - no probs with his heart
3.MRI showed continued shrinkage of the tumour in Reid's leg leaving calcification of the infected area. We will meet with Dr Peter Steadman (the Orthopedic Surgeon) on the 25th October to discuss what we will need to do with this area. But the very good news is the cancer is reducing and is now almost gone!
4. CT scan on Reid's lungs showed another small spot on his Right side. This is not good news. It could be bacteria from all the infections Reid has had over the past month or it could be a metastitis (Secondary Cancer). We may not know. The next cycle of chemo will get rid of it but what it means is that Reid may now have to have Radiation on his lungs down the track. This is a proceedure I am petrified of, but we need to be sure that we get all the cancer, and if Radiation is going to be our solution then we will do it. I was devastated with this news.
Mum and Dad arrived at the unit as soon as we got home and I went for a walk to clear my head. Reid was just so excited to see Barba and Ninnie that he didnt notice my anxiety. I think I cried the hardest I have ever have...if that is possible.
The next day I promised myself not to cry at all and woke with a new positive attitude. I got the family motivated and organised and we all went out on the boat for the day to celebrate Mum and Dads 40th wedding anniversary. We motored over to Peel Island soaking up the sun, and the perfect weather. It was a wonderful day.
Lissa, Luke, Sam, Sophie and Alex all left for Taroom Syunday Morning and Dad headed back to Armidale this morning. Now Mum and I are about to start the next whirlwind. Reid will have another CT scan on his lungs in 5 weeks and a decision will be made then as to how we treat them. Thank you to everyone who is following us and riding these bumps with us. I get so sad sometimes but knowing that I have so much support and love only a phonecall away means an enourmous amount. One day at a time....

CHICKEN POX! -

Chicken Pox must be the most potent of viruses. Reid was in contact with a little boy for one and half hours on the 23rd July. It was found later that night that this little boy had chicken pox. Reid being on Chemotherapy, had to have two enormous Gammagobulin injections in his bottom within 72 hours of reported contact. This was done 12pm on the 24th July. Reid then went to Brisbane and contacted Influenza A. He was barraged with three types of anti biotics intraveneously for five days. When he got out of hospital he continued to take 500mg of (Valtrex) another anti viral anti biotic three times a day for 10 days. He then returned to hospital commenced Chemotherapy. Three days of being filled with highly toxic chemo drugs which made all his eyelashes fall out and lose another kilo in weight. Not only this but Reid then had to suffer another five days in hospital trying to rid his body of Mucositis (Ulcers in his mouth and throat) caused by the chemotherapy. He had another dose of several anti biotics over this time. Finally on the 20th August Reid had got through the 28 days of isolation due to his Chicken Pox (and Influenza A). On the 21st August we were allowed to go home! On the 23rd August we were admitted into St Vincents Hospital in Toowoomba with High Temps and at 12am on the 24th August ( Day 32 since contact) Reid started to break out in Chicken Pox!
People who are not on chemotherapy only have a gestation period of 21 days, when you are on chemo you have to stay isolated for 28 days. Until recently, Chicken Pox is highly potent to Chemo kids. With the introduction of new anti biotics (namely Acyclovia) fatalities are very few with chemo kids contracting chicken pox. Sadly this was not the case not so long ago. So you can say that Reid was lucky!!??! Reid’s chicken pox was only mild, and it looks like we will be able to line up for more chemo as scheduled this Friday.

YAY..........shit

David took the opportunity to have the Nose tube inserted during this hospital visit. This was a procedure that I seemed to continue to put off. Reid dreaded it, Mum dreaded it and I most of all,.. dreaded it. But thankfully David stepped in and took control out of my hands and was with him when he had it done. Dad wanted it done as he could see that our little boy was wasting away. Within three days of continuous feeds, Reid looks like a different kid. He is hungry again. You would think that by putting food into an empty tummy you would never want to eat again; but it has the opposite effect. Reid was probably at the stage when the mind actually forgets what it feels like to be hungry, so by having the gastric juices moving again this feeling of new energy and vitality was good so it triggers the mind to want to eat again. I can honestly say that I have seen Reid eat more in the last four days that he has in the entire 3 months! He looks so good (even without the hair and eyelashes!). He is so much happier with so much more energy. And after the past month he has had….thank you God. Something good had to come out of this…..tbc.PS we got out of hospital today (28th August 2007).

8 Days Home...I Hope!

Reid and I arrived back home yesterday (21.08.07) at around 2pm. Reid was last home July 25th. In the past month he has been in and out of hospital three times for three seperate things. The first being Influenza A, the second being Chemo and the third for Mucositis. Over the past month Reid has had three blood transfusions, one platelets transfusion, countless Anti-biotics, litres of fluids, toxic chemotherapy, and mostly all in isolation as we had been in contact with Chicken Pox so we were a threat for 28 days!
Reid lost weight again after this lot of chemo and a dietitian spoke to me at length about getting the "Tube". This is a feeding tube inserted into the kids noses and down into their stomaches so that they can be fed high protein/fat meals regularly. On the good side all Reids Oral Meds can be given via the tube so he doesnt have to worry about yucky medicines anymore. Looking at Reid we can see that he needs this, but he is absolutely petrified of the procedure. I actually think he would prefer 100 needles in preference to getting this done. I enquired about going under anaethetic for it but this is rarely done unless he has some surgery scheduled. Anyway, no doubt it will happen when we get back to Brisbane.
I am writing this whilst monitoring Reid's temp as it seems to be up a little. We are told that if the temp goes to 38 or above on 2 seperate occasions we are to go straight to emergency. Perhaps his little body is just adjusting itself to Toowoomba!
Today is a little cool and windy but not as bad as last time we were home, I am so paranoid of germs so I am keeping Reid pretty close to home for this stay so we have a clear run for cycle 4 scheduled for the 31st August.
Mum will come back on Wednesday the 29th and then we will head down to Brisbane on the 30th. Reid needs a chest x-ray, and blood tests done so we can proceed on the Friday.
After this lot of chemo we will have the Stem Cell Harvest, Another set of scans for Disease Evaluation, and a meeting with the Orthopedic Surgeon to discuss the type of surgery Reid will need in November. So we have a big month in September. I will keep you posted...love all your messages! thanx xxx

17th August 2007

I am updating this page from The Wonder Factory at the Royal Childrens Hospital in Brisbane. Reid now has Mucositis. Which is the inflamation of the lining in the oesophargus and mouth caused by chemotherapy. He was also in need of PAC Cells (Red Blood Cells) and Platelets. And on top of that, due to the ulcers (Mucositis) he was dehydrated. So we were readmitted yesterday and will be in for the next couple of days.
Reids 4th lot of chemo is now scheduled for around the 29th August. We are hoping to get home for a brief stay before this commences. Dave and Alex and Dad are coming down tonite and the Mum and Dad will head off tomorrow...I think!
Reid is pretty low at the moment, and is missing his friends, his cousins, his home and believe it or not....his sister!
We got the official report from the MRI done 16th July and it was very positive. Reid's tumour is not in the growth plates and there seems to be only one spot. The bone marrow in his knee is also clear. We will have another MRI after the fourth lot of chemo. We will also have the stem cell harvest (put off from our contact with Chicken Pox) and we will also meet with the Orthopedic Surgeon to decide on what type of surgery Reid will need.
Now that I know that I can acess the computer here at the hospital, I will keep the page up to date. One day at a time......(I just wish I could live by that phrase!)

1st August - Back Again!

Reid got out of hospital on Monday, and as you know, I have been at home in Toowoomba, so I haven't seen Reid since last Wednesday. Today Mum and Aunty Gwen took Reid up to Banksia Outpatients and he had some blood tests,his central line dressing changed and a nose suck thingo. This is a test where they put this thing up Reids' nose and turn on a pump, then they test the stuff that comes out of his nose and it tells them whether or not he still has the flu or not. Yucko! It must have been ok, because now the only concern is the fact that 10 days ago Reid was in contact with Chicken Pox, and even though he had the inmunoglobulin injections he could still get the virus, so after 10 days of being in contact he may now be infectious. So he now has to take a course of tablets to make sure that if he does have it,he won't get it. (Does that make sense?) All going well, we start chemo on Monday, but due to the Chicken pox we will have to have our treatment in Patterson ward (the infectious diseases ward) as we cant infect any other children...just in case....we do have it....holy smokes. Nothing is left to chance.
RCH had a teddy bears picnic today, and Reid had his photo taken with Wags the Dog and Dorothy the Dinosaur. It was filmed by channel seven so he maybe on the news tonight! I will head down to Brisbane tomorrow and Mum will head out to my sister's for a much needed break. She and Aunty Gwen have been fabulous. I don't know what I would have done if I didn't have them. Reid is really well, so we may even get a visit to the boat this weekend all going well. But we wont be coming back to Toowoomba until it warms up...I'm not going to risk the flu again!

Sunday 29th July-2 steps forward 4steps back

I am at home. Reid is in hospital recovering from some flu he and I got wednesday night. After we left here Wednesday afternoon we arrived in Brisbane and Reid was very quiet. I took his temp and it was 38.6. After ringing Banksia, we took reid straight to emergency. We were admitted to Banksia and Mum stayed the night with him as I was starting to feel really sick too. Cutting a long story short, turned out Reid had influenza, chemo was put off, and due to our contact with chicken pox we will not be doing the stem cell harvest after this lot of chemo either. when chemo starts is a mystery. Alex isnt well either so David brought me home to get better and take Ally pal to the doctor tomorrow. I am now on anti biotics and can feel them working already. Hopefully Mum and Reid will get out tomorrow and have a few days at the unit before chemo starts. Bloody flu. I hope Mum doesn't get it. My aunt and cousin are sharing the load with Mum and David had the night in hospital with Reid last night to give Mum a break. I just need to get better so I can go back. I haven't seen Reid since Wednesday Night....

Heading Back

Reid and I and Mum will be heading back to Brisbane late this afternoon. We have had the best time whilst we have been at home. Almost two weeks!! Reid went to school, caught up with all his little friends, I saw so many of my wonderful friends, we had lots of quality time with Alex and David; and almost started to feel normal again.
Reid unfortunatley came into contact with Chicken Pox, so had to have the imunoglobulin injection in his bottom. But we got word of it early so everthing should be ok. I feel so sad for the family and the little boy who is now fighting the infection.
I went to a fund raiser whilst I was home. It was a rather grand gala event held at the Empire Theatre Church Hall. A beautiful night, black tie, masks, ball gowns, fabulous music, great food and a wonderful cause. All funds raised went to the Childhood Cancer Support Foundation. A group who supports kids and their families from the bush and rural communities after they have been diagnosed. I did find the night very confronting, and in times past would have loved being part of this event, this time I sort of felt so so sad. However I do believe that the night was a huge sucess and lots of much needed funds were raised for a fantastic cause.
Tomorrow Reid will begin his third lot of chemo. We will be in hospital for about a week. At the end of that week he will then begin a course of GCSF injections. These injections encourage cell growth so at the end of this course (7 days) Reid will then undergo a Stem Cell Harvest. I'm not too sure how this is done but Reid will be attached to a machine which will seperate his blood to collect stem cells. This harvest will then be stored for Reid in case he needs a boost after his surgery. At this stage Surgery should be late October.
Reid has been really well the entire time home. He has gained weight (thanks to his staple diet of Steak and Chips), fought with his sister, messed up his room, and loved seeing and playing with his little friends. How lucky we are to have these days this time. Lets hope and pray that all our times at home will be fun ones.
Thank you to everyone who has travelled this journey so far with us. Your constant phone calls, letters, love and smiles are always appreciated.
The year ones at Mater Dei with help from the Mums and teachers made this most beautiful quilt (see pic) for Reid to take back to hospital with him. Each student and teacher drew Reid a picture, and the Mum's then sewd them all together. This will certainly be a much welcomed change to the Blue Queensland Health Quilts on his bed this time. thank you xxx