Dealing with my Non-chronically ill Children in the face of Zoe's SJIA

I have recently been asked how I have dealt with Paul and Mia (Non-chronically ill children) in the face of Zoe's illness and when I responded to the question I was asked to add it to my blog. So this is how we have dealt with Paul and Mia throughout this time of trial. By no means do I think this is the best and only way to deal with siblings of a chronically ill child but it has and does work for us.

Since the beginning we have not tried to shield Paul and Mia by hiding information or excluding them from conversations. They are a part of all of this whether we like it or not and they love Zoe just as much as Willy and I.

A lot of our reasoning of keeping communication open and simple to Paul and Mia stems from my own childhood. Admittedly I was a lot older than Paul and Mia but when my Mum was diagnosed with Breast Cancer and given only 15% chance of living through that year, no one would tell me anything and I actually found out most of what was happening when I eavesdropped on a telephone conversation my Mum was having with her brother.

I was hurt and angry that no one told me and that no one was honest enough with me. Now I know this method of “deception” was thought of as “Protection” by the Adults in my family, however -Deception- was exactly how I thought of it and I didn’t want my kids to ever think they were not important enough to tell. To a child’s mind that is what it comes down to… I felt that I wasn’t important, wasn’t in on the big secret, wasn’t accepted and therefore not told.

When Zoe first got sick Paul was 8 and Mia was 6 and they were old enough to understand. There was so much stress in our house, a few tears and many whispered discussions and they both knew something was terribly wrong with Zoe because she cried all night long and couldn't walk or crawl any more.

So we explained that Zoe was sick and that she was in a lot of pain ALL of the time. We said that the Doctors are trying to find a medicine that will help her but at the moment there is nothing that will make her completely better. As things progressed we explained things as we went.

We started Zoe on Kineret which was a needle every day at home. Paul would get the needle out of the fridge an hour before we had to administer it and Mia would get the alcohol swabs and the needle box. We gave them the choice to be in the room with us or not because I figured if we shut the door and they heard Zoe crying they may imagine worse things than what was actually happening. They were really brave and wanted to stay. They would give her kisses and cuddles after and it was just a part of our morning routine.

 
Mia is the type of child who needs to have a lot of communication before anything new is going on in the house. That does not stop them worrying about Zoe. Mia has nightmares about Zoe dying or going to hospital via ambulance. So subconsciously I know it still affects them no matter how open we are about Zoe’s illness.

Since Zoe has started Actemra the kids know that Zoe has a weakened immune system and that we have to be careful about illness and so on. They come in the house and wash their hands with alcohol hand wash and if they are sick they don't approach Zoe.

 
They are still rough with her and believe me Zoe is right in the middle of everything. From sliding down the stairs on her bum to jumping on beds and climbing on tables etc. She knows her physical limits and yet still pushes them continuously, which we encourage to a certain extent. 

The most important thing for us was to let them be normal as much as possible. They are siblings and need to create a healthy balanced relationship that all siblings have. They will hurt one another but they also learn from that.

Paul is a protector by nature and Zoe has him wrapped around her little finger. He will give in to her as soon as the first tear drops. lol. We also bought Zoe a medical ID bracelet and it is not common here in France and we taught Paul and Mia how to read it and what needs to be done if we are not available or able to talk to anyone if Zoe needs help. So when there is a question asked about it, Paul or Mia usually jump in and explain it. Their words are "My sister is sick and these are her medicines and these are her doctor's numbers and they can't fix her but they are helping her". I leave it at that.

 
You will find what works for your family and you know how much your child can take in and accept without it being an overload of information, the key is to find a balance. Don’t stuff information down their throat if they are not interested or asking questions. Maybe wait for them to approach you with questions first. Body language is always a good give away. If they start jittering then they have probably had enough information to digest for one day, so go with your gut and you'll be fine. 

Here is a small Video of Zoe trying to walk again for the first time after 8 days of Kineret.

Future Blurred...

Well I have had a few days to sit and reflect on Zoe's 2 hospital appointments in Paris on the 17th of January 2012. Although we didn't get bad news and well quite honestly compared to what we were thinking the outcome would be, it was actually pretty good news. I am still feeling like I hit a wall at 100k/h. I feel bruised and sore all over my soul and for this I feel really stupid. Why should I feel so low when the information we got was better than the alternative?

The minute we walked out of the hospital I felt like I had a big black blanket of fatigue drape over me and it is still trying to tie knots around my ankles so as I would lie down and never get back up. It is good to know that I can kick Butt when I need to, even if it is my own.

So now I am up and ready to tell this next part of Zoe's up hill climb.

In my last post I was saying how we found out her eye sight was very bad and that we couldn't understand how that could be. Being tested every 3 months or so for the past year and never being told of a problem we were shocked to find how big of a problem it actually was.

So we made an appointment for a second opinion in Paris. At this stage we were not sure if it was her illness, the treatment or both that was causing her vision loss or if it was luck of the draw and she was born with very bad eyesight. Since she had been tested so often and nothing had been said to us we figured it was impossible for it to be the fact that she was born like that.

Willy and I started discussing our options as to if it was her treatment causing it. We have had it pointed out to us before from her Specialist that Actemra will be her best chance as she had already failed the other treatments available to her. So if this was taking our baby's sight but giving her back the possibility to walk, run, and play with Paul and Mia and taking away around 65% of her daily pain what would we choose to do? Take away her treatment which would evidently confine her to a wheelchair and leave her in extreme pain or continue the treatment and try and show her as many beautiful things and colours  as we can with the probability of her going completely blind in the future.

Imagine looking at your child and making a choice like that! We made ours and it was so hard but luckily the results we were given a few days ago means that we do not have to put that choice into motion!!! It has been said that it isn't her treatment causing the vision loss but it was in fact missed in all of her other eye exams over the passed year. I still have no idea how such a mistake could be made with the extent of her problem.

The Ophthalmologist in Paris said that she thinks we need to have someone with a lot of experience looking at Zoe every 3 months because not only did they miss this and cause us extra stress and unnecessary worry but they have also been giving us the wrong information, in which, if we had listed to them we may have potentially put Zoe's sight in danger!

I know now that going with our 'gut' when it didn't feel right and seeking out a second opinion was the best thing we could have done. Zoe still has a disability with her vision but it is not being caused by side effects or Actemra and for that we are so very grateful.

As for her illness, Actemra is doing it's job. Her upper stomach pain that she is getting could possibly be a Pericardia which is inflammation around the heart. She had extra blood work done and she will also get a cardiogram done. Her specialist is happy with her range of motion in most of her limbs but is not happy about upping her pain medication because that will cause additional problems, he said that she will get use to her pain and that there is nothing anyone can do to exclude it completely. We can help her by giving her warm baths more often, heat her clothes in the morning and put wheat-packs in her bed to help her sleep.

As of next week we will be upping her medication (Actemra) to see if that will reduce some swelling behind her knee's and her hips. The good thing is she has put on 3 kilo's in 17 months!!! I know that doesn't sound like much but it is huge for Zoe! This disease can cause a form of Anorexia as well as many other things. She has also grown 6cm in 17 months. So with that I will leave on a positive note and a smile :) I am proud of my baby girl and of course of Paul and Mia for their strength and love.

I thought I'd add a poem also.

I Still would have chosen you - By Terri Banish


If Before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you.

If God had told me, "this soul would one day need extra care and needs", I still would have chosen you.

If he had told me, "this soul may make your heart bleed", I still would have chosen you.

If he had told me, "This soul would make you question the depth of your faith", I still would have chosen you.

If he had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you.

If he had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you.

If he had told me, "All that you know to be normal would be drastically changed", I still would have chosen you.

Of course, even though I would have chosen you, I know it was God who chose me for you.

7th of January 2012

The first 5 days of January were fantastic. I had a whole new energy around me, I felt like I could take on the world. I still feel like that most of the time but the last 2 days have been getting harder for Zoe.

Thursday Zoe started getting irritable again. She has started going off her food and she has wet her pants twice and wet the bed once.

I had noticed a pattern a few blogs back. She has her treatment on the Tuesday, Wednesday she has an upset tummy (loose stools), Thursday she seems stronger, happier. She is fine by Friday, Saturday, Sunday, Monday, Tuesday and by Wednesday there is a decrease in appetite, then Thursday she is irritable, tired and clingy. 

So if I go by this pattern it means that Zoe has One whole week of feeling "good". She still has the daily pain but she deals with it. I noticed also the last time she was like this she also wet the bed and her pants. I guess I had never noticed before because she had nappies. I know it is normal for kids her age to have accidents but she doesn't do it without the other symptoms. Coincidence or effect?   I guess this is another thing to talk with her specialist about. 

We had a meeting with a lady from the Government agency who help Physically handicap people. We are discussing a Paediatric Pram instead of a wheelchair, that will be suitable and adjusted to Zoe and her needs. A normal pram keeps the spine in a cocoon shape, the feet rest is too far down for it to be useful for Zoe and there are no arm rests. Therefore she is sitting with her legs dangling down and when she has swollen knees or ankles they will throb and cause more pain. So her body is not able to rest as much as she needs. Her legs need to be elevated a little and her arms need to rest on something also. Seat and Back need to be firm but comfortable.   So we are in the throws of getting this sorted out.

Apart from that we have also been given the appointment at the Ophthalmologist in Paris (for a second opinion)   which will be just before her appointment with her specialist. Needless to say Willy and I are very relieved.  

It is treatment day in 3 days and I know she will feel better next week. She also started back at pre-school after 6 weeks off. I had one morning all to myself. It was amazing to do Nothing at all :°)

I will write again after the 17th, when we have seen her specialist.  

Saying goodbye

This will be my last post for 2011. Thank God this year is over and thank god our love for each other as a family is strong! It was a difficult year for all of us. Willy and I have experienced hurdles in our 10 year Marriage but this year we've experienced MOUNTAINS and I am happy to say we have survived. Paul and Mia faced difficulties adjusting to their baby sister having a chronic illness and the absence of my time with them of which I had to give to Zoe but they have also survived. Zoe's challenges will continue but she lives her life to the fullest and although she complained of leg and feet pain today, not once did she stop and give into that pain. She is our hero and the core of our strength. Goodbye 2011, I hope we never live another year like we have this one and if we do I hope that we have learned to cope a lot better, with more strength, communication, support and love for one another. I pray for a cure, I pray that the medicine Zoe and other children take fighting this disease will not cause other illnesses. I hope next year will fulfil all our dreams and bring health and happiness to all.
Now 2011, bugger the hell off and let the year of the dragon begin!

Happy New Year 2012!

Sleepless nights.

It has been a while since I have written in the blog. I guess I have needed a little time for everything in me to settle down. I don't know which way is up or which way is down at the moment.

For the passed 12 months, Zoe has had 6 eye exams. She was only meant to have 4 (1 every 3 months) but we took her 2 times on an emergency visit because she had pain in her eyes. For the first 2 Eye exams there was no sign of inflammation in her eyes, however for the 3rd they notices small amounts of "old inflammation" (She had had a flare up 15 days prior to that appointment).

3 Weeks ago Zoe started complaining of sore eyes again, so we took her to the hospital and they did a quick check for inflammation and we were happy to find out that there wasn't any. So we wanted to know why she had pain and they asked us to come back the following week for a thorough check up. Off we went with drops to put in her eyes for 7 days to open up her irises. Last week we took her back and low and behold her Vision is not good at all. They have a scale here in France from 0 - 5.
0 being 20/20 vision and 5 being highly vision impaired to legally blind. We were told Zoe is at 3.

Now we are wondering how this could have been missed during the last 5 exams? Was she born this way? Is it the disease (We know her eyesight can be greatly affected)? Did the resident do her job properly the first 4 times? (The 5th and 6th was a different resident) Or worst of all could it be a side effect of her treatment?

There is not enough information out there on this drug to know what kind of side effect may arise. Zoe was only 19 months old when she started this drug, when normally she should have been over 2 years of age. We should have asked more questions, done more research but we were desperate for her to be out of pain. Admittedly we were not given other options besides, operations and going from 1 needle of Kineret a day to 2, when she was already having horrible side effects from that.

I hope that Zoe's loss of vision is not due to the medicine because then we will have a very difficult decision to make.

We have asked for a second opinion  and we are now just waiting to hear from the Ophthalmologist in Paris in the hopes that we can get an appointment relatively quickly. I will write more when I have more info. 

Thankful for treatment

Today I am thankful for Zoe's treatment. Although there are negative aspects to an immuno-suppressant drug it has been proven to me this week that Zoe NEEDS her dose every 2 weeks without delay! She spends a day in hospital every second Tuesday.
The hospital forgot to order the Meds last fortnight and didn't realize until the day before Zoe was to to go in for her infusion. Therefore her appointment was cancelled and it became a waiting game for the Lab to contact the hospital saying when the medication would be ready.
Luckily for us it only took 4 days. Zoe had been in pain from the Friday before she was due for her treatment. It was a long week and a half, with Zoe crying every day.
Her knee started to swell on Wednesday, which is obviously why she was crying and walking a little funny.
On a positive note the Dr was able to see that her knee was swollen, which is not always the case! A lot of the time it is us telling the Dr what we see but them not actually seeing it for themselves, so this time I know it was taken into consideration.
Today Zoe seems happier. Her knee is still inflamed and she has started to cough again but she has stopped crying and I can rest a little. ;°)

5 days and no pain :)

Ok This will be short and sweet. I am very happy to say that Zoe has had 5 days in a row where she has not complained of pain! She went to Hydrotherapy yesterday and worked very well and had a lot of fun.
She hasn't eaten very much today and she slept 4 hours for her nap this afternoon.... but I think she is just very tired from Hydro yesterday.
I have put a Humidifier in her bedroom to help her lungs a little and she is still taking cortisone for her lungs also. She will finish the course of cortisone in 2 days and I hope that her lungs can have a break before getting another infection.
I hope I don't Jinx her by writing this but I can tell you that it has been a much needed stress relief for me, to not have her in constant pain. :D
Fingers crossed next week continues this way.
xx