Hayden's Journey

Yesterday was a VERY long day, but despite its length, the end results were so worth it – Hayden’s MRI results show no further tumor growth at present – all stable!

We started the day at Children’s Hospital in Bellevue at 7am for Hayden’s MRI – the first one in 6 months, so Brendon and I were very apprehensive, especially because in the last months Hayden has had a few episodes of nausea that was starting to mimic – “the old days”.  He even woke at 2am the morning of the MRI screaming for us because he felt so sick and needed Zofran the anti sickness drug (we think this may have been anxiety related due to the upcoming MRI).  

After another rather frustrating experience with the anesthesia staff – why oh why don’t hospital staff get it!  We have been doing MRI’s every 3 months with Hayden since the age of 4 years old.  We know how he reacts and what works – REALLY we have been here over and over!  It starts with the same old, maybe you don’t need an anesthetic (even though we explain he will freak out in a machine that you have to stay still in for an hour and that is like a tunnel where he will be claustrophobic but they insist!).  They show him the MRI machine (terrifying for him) and explain he will have to stay totally still for an hour – with a scary head brace on and it will be really loud – I can see the fear in his eyes and the ashen color of his face.  then the technician looks at the nurse and anesthetist and say quite bluntly that the MRI is of the brain and spine takes an hour and there is no way he will be able to stay still that long (let alone tolerate the noise and the claustrophobia!).  Which is exactly what we had already pointed out!!!  But hey who are we – just his parents who know him better than anyone else (so by this point we have wasted time, made Hayden feel very anxious and scared and drained his parents who feel like it’s a constant battle explaining over and over the same old!).

Then we get to the anesthetic room – where I explain from our prior experiences – Hayden is very frightened of having a mask put over his face.  So we use a small pre med (anti- anxiety drug) and then he sits on a parents lap, and we place the tubing under his nose, while cupping our hand around the tubing and his nose so he breathes in the sleeping gas.  Then we lift him on the table and hey presto life is easy!  But no – we have to have the whole conversation that he needs a pre medication (based on prior experiences and what the anesthetists have told us in the past as he is trying to fight them, when he is struggling to keep the gas away from him).  Also prior to the whole procedure, weeks before, I have had this conversation with scheduling who promise they will let the medical personnel know.  It’s in his medical notes.  And I had a conversation with the practice nurse in the MRI suite just the day before his MRI, who assured me she has had a word with the anesthetic team, who said that’s fine they will just give a pre-med through his feeding tube to ensure he is calm and relaxed. 

Honestly, I know we should expect it, but it’s so frustrating – every time it happens, no matter what I do beforehand to explain!!!  As a parent it’s exhausting – its hard enough seeing your child have to go through all these procedures and being anxious about the results, let alone starting the day having to fight for your child’s comfort.  Honestly, the caring profession needs to get a bit more caring in my eyes (ok got that off my chest!!).

So after that it’s all plain sailing apart from whatever they gave him as a pre med made him very drowsy indeed and it takes him over 4 hours to wake up!!!!!  The nurse in the recovery room asks us why it’s taking so long for him to wake up!  Err, excuse me?  I have no idea, it’s usually not this long – what did you guys give him!!!  It’s very obvious that after a couple of hours we were not welcome!  But as time wore on Hayden eventually became his old self again – demanding a visit to the Lego store for bravery (a negotiation that had taken place prior to his MRI) so we knew he was fine. 

So a trip to the Lego store and Red Robin to eat and then off to Seattle to see his oncology team.  The oncologist, the dietitian, the neurologist and the endocrinologist.

Hayden’s oncology team are delighted with Hayden’s progress, the MRI showed all his tumors were stable – no tumor growth.  The imaging also showed a small space in the medulla region (that’s a part of the brain stem), that may even suggest some decrease in swelling of the brain stem tumor – which would explain Hayden’s continued good health.  This is the best MRI result we have ever had.  It appears that the decision to push for surgery was a success!!!

The endocrinologist suggested that given our recent medical problems at home, that it was best not to upset the status quo (for those of you who do not know, I was diagnosed with breast cancer in December and have ended up having a double mastectomy, and will start reconstructive surgery in April).  So we will keep Hayden on his  low dose of steroids and thyroid drug until after I have recovered from the reconstructive surgery, with the aim  of titrating him down and eventually getting him off the steroids and taking bloods to evaluate his thyroid hormone level (so we can get him off the levoxine). 

Neurologically Hayden is stable, he continues to have some generalized weaknesses and neurological impairments, but no marked differences, so the neurologist has said unless we have any concerns in the future, he will not need to revaluate him for a year!!!

Nutritionally Hayden is doing well.  He is growing upwards like a weed and is maintaining his weight around 80 pounds with a BMI (body mass index) around the 75th percentile!  This is wonderful!  To put it into perspective, when the feeding tube first went in his BMI was below the 2nd per centile and his weight below 5th percentile (his weight is now around the 80th percentile!). 

We have not given Hayden a feed via the feeding tube for about a year now – we are literally using the feeding tube for drugs only (because his gag reflex is so bad he cannot tolerate taking his drugs orally).  However, if we can get him off the steroids and thyroid drug we can get rid of the feeding tube – yeah!  Hoping to get it out in the next 3 to 6  months! 

His eating habits still remain poor.  his food groups are cheese, cheese and cheese!  That is cheese sandwiches, cheese pizza and cheese!  So our aim here is to try and work with an occupational therapist and psychologist to help him with his food aversions and fear of textures.  But just like Rome was not built in a day (and if you ask me it’s still in ruins ), it will take time, effort and plain hard perseverance.  So it’s on the agenda, but we have a few health issue to get over and then we will have the energy to tackle this one head on!

Bottom line is that Hayden is doing really well!  He is a very happy go lucky boy at the moment and we are all enjoying his continued health.  We feel blessed that he is so well at the moment so that we can concentrate on getting me over my little health mishap and then it’s full throttle – life here we come!

We are going to be going to Arizona (our first travel in years) in the spring break.  Hayden kept on telling us how all his friends get to go on vacations and we don’t ever go on any! (poor dear – he only has a lake house – really doesn’t your heart bleed for him!!)

Hope you are all well.  Take care. 

Sorry it’s been so long!  At last after one and a half years of Hayden waking up feeling sick or vomiting or just not being able to do anything because he felt so nauseous – we have had a break!  Yes, the reason I haven’t been writing the blog is because we have been busy catching up on life.

Things have changed dramatically for Hayden and for us as a family since Hayden’s surgery.  Initially following surgery things seemed to get better for a while and then the nausea came back with a vengeance and we started to feel very anxious – had we had this surgery for nothing?  Then out of the blue one morning in August Hayden woke up feeling great, no nausea or vomiting – it was a breath of fresh air!   He was smiling and laughing and had some energy and stamina again and we haven’t looked back since. 

Hayden is still on a low dose of steroids, because every time we tried to take him off he would start to feel very fatigued, nauseous and run down again, so our endocrinologist suggested we just say on a very low maintenance dose and just enjoy life for a little while.  So that is just what we have done.  We are due to see her in March to see if we can eventually wean him off the steroids completely, but until then we are going to enjoy him being very stable.

So far since September Hayden has only had 3 days off school for sickness, which is a miracle, given that last year he spent more time off sick and in hospital than he actually spent at school.  He is loving being back with his friends and although he is very behind in comparison to his peers – he just loves school and is the first one outside every morning waiting for the school bus.  Believe me it’s a pleasure to see him so full of life and vitality – it makes everyday a good day!

Hayden has lost a lot of the weight he gained and the bloating from the high doses of steroids.  Its so nice to see him looking a lot more like his old self again (but nowhere near as skinny, he is maintaining his weight around 78 pounds which is perfect!).  The moon face has gone and a lot of the fluid retention has dissipated, but the good news is that he has maintained enough weight that we are no longer tube feeding him.  He still has the feeding tube in and we use it to give him his drugs and to give him some juice because he still eats junk only.  But the good news is that since the nausea has gone he will eat grilled cheese sandwiches again!!!!  Yep, unfortunately his diet is still incredibly limited and he still has major texture issues.   Cheese, bread and chips are his dietary staples but at least he is taking something orally.  Our next huge challenge is to go to an occupational therapist who runs a food clinic.  But I just haven’t had the energy, time or enthusiasm to do this yet.  We just needed a total break from the clinical/medical world for a while.  But I know it will have to be on the the New Years resolution list – to take Hayden to OT food clinic (boring!)

The great news is that Hayden has started swimming lessons with his sister again, is enjoying play dates with his friends and is able to travel by car again, so we have managed to spend a lot of weekends at the Lake house, which has been phenomenal.

The crazy thing is that believe it or not, Brendon and I are more exhausted than ever before.  It’s like we are trying to catch up with the last 4 years of chemo, sickness and hospital stays.  I guess we have been in crisis intervention mode for so long, that once the adrenaline goes you realize how exhausted you really are and how much you have to catch up on.  For example, I hired a dumpster and spent 4 weeks just throwing out half a house full of “stuff” that had accumulated over the last 4 years.  Trying to spend as much quality time with our sweet little girl Charlotte, who has soldiered through so much with us.    Plus catch up with friends and family who have been neglected over the years…………the list continues.

The only thing to say though is “life is good”  We are happy, blessed and believe me when I say that everyday Hayden is well is a treat! 

Promise to post again, with more positive news I hope.  Next MRI in March.

Hope you are all happy, content and well.    

it feels like a miracle!  Hayden has not had nausea or vomiting for 4 mornings in a row!!!!  It is so invigorating waking up to hear Hayden come into our room and say no sickness today Mum and Dad!  Instead of crawling in, groaning and being unable to move because of the nausea.  I really hope I am not jinxing it by writing it on the blog! 

Each day Hayden wakes feeling good, is like a small miracle to us – it just starts the day off with such a great feeling.  I literally feel like a small weight is being taken off my shoulders each day we have no groaning and sickness.  It’s so wonderful, I just can’t explain it – just think “Zipitty Doo da, zippitty eh, my oh my what a wonderful day!  (remember that song from some Disney movie?)

Unfortunately, it’s not all great news though – he really has stopped eating again – he is gagging on most foods and textures of even the foods he used to eat (nachos, toast, banquette and cheese and pizza) are now setting off his gag reflex.  Poor kiddo we have a break through on one front and get a repercussion on another.  Right now his weight is still good (an after effect of the steroids, because a side effect of them was appetite increase, which made him pile on the weight), but he does still require food as fuel, so I think when we get back into school and “normal life” again, we will have to revisit getting help for Hayden’s feeding eversions.  But for the rest of the Summer we will continue to give multivitamins and when we get home, I may have to start juicing and putting nutrients in via his g-tube, the only problem being that I can’t give him much volume through it.

Hayden is still on a low dose of steroids, because we found we were unable to wean him off then successfully.  His adrenal glands are basically taking their time to kick back in, so we are just giving enough to maintain his hormone functions.  In the next couple of weeks we will need to reevaluate this with his endocrinologist again.

Hayden and his sister have been enjoying being at the Lake.  They have been swimming, playing on the beach and going out on the canoe with Brendon and I – it’s so nice to see him laughing with his sister – it really is food for the soul.  he had one of his best friends visit at the weekend and has some more friends visiting during the week.  It’s great for him, but I do have to remember that unlike the other kids, he really must have his sleep, he doesn’t just get grumpy like normal kids, he can also become unwell very quickly.  His nausea gets worse and he is highly susceptible to fatigue and becoming run down easily, then he gets a cold or an infection etc.  I really have to be vidulent about this, because it’s hard to send him to bed when he is having so much fun, because we love seeing that so much.

He really is struggling a lot with his mobility at the moment.  He finds it very difficult to walk and run these days, but really given what is going on in his body it’s a miracle he can do as much as he can, but we forget and just want him to be the same as the other kids, until we kick ourselves and come back to his and our reality.  But we are going to get the neurologist to check him out, because he is complaining of backache a lot these days and he does have 2 small tumors on his spine – so we need to make sure it is not these impeding him – because there is a possibility they may be able to remove them – but that’s a whole other discussion and at this time probably not warranted, given the risks associated with procedure.

He is also starting to look more like our old Hayden again.  We are starting to see the “moon face” from the steroids going – his face and checks are beoming less puffy and swollen, so we can see his eyes again!  This is very nice, we are starting to recognize our son again.

We are all doing well at the moment – long may it last!  School starts next week and Hayden is so excited!

Sorry I haven’t blogged before, Thursday was a very LONG day.  Poor Hayden just hates having his MRI’s, you would think after 4 years of having an MRI under sedation every three months it would get easier, but alas no it remains a very traumatic experience for Hayden and his parents alike!  Poor kid just hates having an anesthetic, he refuses the mask and gas, so we have to have him sit on one of our laps and then we hold the tube under his nose and cup our hand over it, so we don’t get too much of the gas ourselves – although a wee sleep to us sounds extremely enticing, but not to Hayden.  He struggles and fights us all the way, but we are lucky the staff at Children’s let us take control and do this and then put him on the trolley etc.  It’s years of practice, but I think they totally appreciate it, because he is extremely combative and kicks and lashes out, screaming at the top of his voice that he doesn’t want the gas.  So one of us has him on our lap with the gas and the other one holds his arms and legs, to prevent injury!  It’s hard for us to see him so traumatized but it has to be done. 

The preliminary results show that his tumors remain stable – so no obvious growth since his last one in May, but it did show steady progression of the tumors from January 2008 to January 2011.  So although the results of the MRI’s over the years are somewhat stable, small differences over the years are occurring.  However, there was a “decreased size and conspicuity of cervicomedullary junction high T2/FLAIR signal lesions”.  Make sense to anyone out there?  This is what we have to decipher – it’s like the enigma code!  Bottom line is there was probably some swelling in that region (part of the brain stem) prior to his surgery.  By removing the first vertebrae in his neck and some of the base of his skull, the pressure of these bones pushing on the tumor, was probably causing the swelling.  So when the bones where removed, the swelling came down.  This is a preliminary hypothesis put forward by our oncologist, however, it will be discussed further at tumor board next week.   

However, regardless of what the verdict is, the bottom line is we will only embark on further treatment if Hayden’s quality of life is so poor it warrants poisoning him with chemotherapy in the hope that it would shrink the tumors, or radiating his brain and risking cognitive impairment and/ or risking a secondary malignant tumor growing (NF patients have a greater potential to grow malignant tumors as a side effect of radiation treatment because of their faulty tumor suppressing gene).  As you can imagine, we will never take the decision to start treatment lightly!

Hayden is doing pretty well.  However, most mornings now he feels extremely nauseous and we have had another episode of projectile vomiting one evening.  So he is definitely starting to get some of his symptoms back and they are becoming more pronounced in the mornings again.  He literally wakes in the morning groaning and moaning because he feels so sick, but the good news is that the zofran (anti-sickness medicine) is still working (unlike before the surgery) so after about an hour he is feeling a lot better. 

The other thing we are noticing is that his mobility is getting worse, he finds it very difficult to walk for short periods, finds it impossible to run and has frequent trips and falls (probably balance related because of the cerebellum) and he has started to drag his right foot again.  So we are going to go for a check up with the neurologist in a few weeks time.

It all sounds so gloom and doom, but I have to remind myself, Hayden is exceptional given he has three brain tumors and where they are.  Many children and adults who have tumors in these areas are no where near as mobile as him, do not do half as many things as Hayden is able to do, many are in severe pain and Hayden is not and he does have a fulfilling life full of many happy times.  It really is unbelievable that he doesn’t have a lot more symptoms and is not more disabled.  But it’s just impossible not to want him to be normal like his peers – even if it is totally unrealistic! 

We are still on a maintenance dose of steroids, so he still has a few of the unpleasant side affects (like “roid rage” – what they call the mood swings associated with steroid use and water retention etc.).  But the good news is he has lost some weight – he has come down from 100 lbs to 89lbs so he is beginning to look more like the Hayden we used to know – although he still has a long way to go.  However, we have to be careful he doesn’t loose weight to quickly, because his body still needs nutrition and now he has stopped high doses of steroids he is not eating much and what he does eat is junk! 

The good news is Hayden is well enough for us to be spending a week as a family together at our house at Lake Wenatchee and everyday so far he has been down to the waterfront and played in the sand and managed to climb down the steps to the water front and back up (which believe me is no easy feat, there are about 30 steps and it’s steep).  It’s delightful seeing him outdoors playing with his sister (I could do without the constant arguing though – but I have to remember it’s great they are arguing, he used to be so sick before, he was unable to even argue with his sister!)

Lastly, I would just like to give you all an update on our STP fundraising.  “Hayden’s team” raised over $26,000 (that is without company matching – which will add at least $5000 more).  This means with your generosity we have raised enough money to fund the initial stage of a clinical drug trail – THANK YOU SO MUCH!

Take care everyone and thanks for following our roller coaster of a journey with NF! 

Hayden returned home from camp on Saturday – worn out and in what initially appeared in good spirits.  However, we did notice he was not raving about camp like he did last year.  The first thing he told us when he saw us last year when we went to pick home up was “can I come back next year”.  This year he was less enthusiastic and when we asked him if he wanted to do camp next year, he said he might give it a miss for a year, but do it the following year.  This disturbed us a bit at the time, but we thought he was just fatigued and looking forward to seeing his friends who were staying with us that weekend, so we let it go.

Since then, he has told us that there was a boy in his cabin who was bullying him and picking on him.  Hayden is a sensitive soul, so we hope it was more a case of his feelings being hurt, rather than physically hurt – although he did mention that the boy did knock him on the head with his fishing rod and tripped him up.  Whether, it was as bad as Hayden is making out or maybe not as bad as it sounds we are not sure.  All we do know is that he had two counselors in his cabin and in close proximity all week and plenty of other staff around too, so hopefully it was dealt with.  But the sad truth is that it effected his experience.

It’s not all bad though, he has told us a couple of fun things he did, and I think that he was also feeling a bit off color, because on Saturday night he started to vomit at the dining room table at supper time and on Sunday night he felt very sick and nauseous, and again vomited large amounts.  He was up most of Sunday night groaning and feeling sick and most of Monday. I must say it was soul destroying seeing him go downhill so rapidly.

We also noticed that he has a green runny nose and a low grade fever and was having pain in his right ear.  By Monday evening he was complaining he felt unwell and groaning that he was really nauseous and complaining of a lot of pain in his ear, so we called the on-call endocrinologist at Children’s Hospital for some advice.  She suggested we go back onto the steroids because he had a fever and probably had picked up a viral infection at camp.  Because he had just come off the steroids on the Saturday morning his adrenal glands are still very sluggish at mounting an immune response. So we are back on 15mg of hydrocortisone three times a day, while he is fighting this virus/infection.

We also had an appointment with the endocrinologist today to follow up.  She felt Hayden has a virus of some sort and his body is also finding it difficult to come off the steroids.  His adrenal glands have got used to an artificial steroid being given and thus have stopped producing their own hormones and are instead relying on the drug.  She feels this is why Hayden is feeling so rough and constantly fatigued, irritable, having mood swings, feeling very nauseous etc. He should go back on a low maintenance dose of hydrocortisone for a brief period until he is feeling a bit better and then we can try and come off the steroids again.  She explained this is a fairly typical response to trying to come off steroids and that many children require a prolonged period of a maintenance dose and several attempts to come off before they are successful and their own adrenal glands kick in again.

We do have a problem though, many of the symptoms associated with a steroid withdrawal are also symptoms Hayden was experiencing due to his brain stem tumor.  The nausea, fatigue, tiredness, lack of energy, lack of eating and difficulty sleeping, are also signs of brain stem tumor  growth/pressure.  He is such a complex picture.

Hayden was diagnosed with a curvature of his spine (scoliosis) over a year ago now.  Scoliosis is one of the relatively common complications associated with Neurofibromatosis 1 and can lead to nasty deformities, decreased mobility and severe pain.  However, his x-ray today showed that his curvature is not as pronounced as it used to be.  The orthopedic doctor suggested that because Hayden has been so ill when he has been x-rayed in the past (from lack of nutrition, vomiting and being so underweight), that his posture during x-ray may have been what was giving a false positive, and now he has some weight he can hold himself better and hence he feels Hayden’s spine looks great at the moment (almost straight).  This is great news and he is so happy he suggested coming back in 2 years for his next check up!!!!  Yeah, one less hospital appointment!

We are due to have an MRI next Thursday to keep an eye on what is happening with the tumors – so we will update the blog after that.  But to end on a positive note, the steroids are beginning to kick in and Hayden is definitely beginning to perk up again.  Hopefully, we will have no more vomiting episodes and less nausea.

Lastly, a huge thank you to all of you who sent Hayden mail while he was at camp.  You made a little boy very happy!  He was so chuffed to receive your postcards, pictures and cards, it made him feel very special and loved.  Thank you so much, he has kept everyone of them  and reads them each night at bedtime.

Take care everyone!       

The infection at Hayden’s “g” tube site is at last under control, with the aid of a heavy duty antibiotic and an antibiotic ointment we have been applying three times a day.  I think the infection was making him feel pretty grotty to begin with, but he is much more chipper these days – which is lovely to see.

Unfortunately for the last month or so Hayden’s morning nausea has come back with a vengeance. Which is obviously concerning for both Brendon and I because we fear the surgery was not successful, and that removing the bone and part of the base of his skull was in vain.  We had our doubts straight after the surgery, when the surgeon told us, that the brain stem tumor was pushing on the dura (hence the reason he couldn’t do the dural patch because if he had opened the dura the brain stem tumor would have mushroomed out and he would not have been able to seal it with the patch).  The dura is the fibrous membrane around the brain, which in Hayden’s case is preventing the brain stem tumor having room to expand, so even though we took the bone away to give the tumor more room, the tumor is still unable to expand.  Thus the vomit center is still being compressed and causing symptoms.  However, that all said, he is not anywhere near as bad as he was prior to the surgery – when he felt sick all day and groaned all day because he just felt so nauseous and was also vomiting.  Plus in the past anti-nausea medication did not work and right now we can give the zofran (anti-nausea drug) through his g tube and within an half an hour he feels a lot better and usually then proceeds to have a good day.

It breaks my heart though to hear him tell me ‘mummy I don’t think the surgery worked because I still can’t run”.  Bless him, he really is having difficulty with his walking and gross and fine motor skills.  He complains of pain in his feet quite frequently after only walking for 10 minutes.  Plus we have recently noticed that he is dragging his right foot a little again.  Poor kid, he so wants to be like his peers and join in with sports etc. but he just gets so frustrated, tired and fed up.  But what he doesn’t realize is he is actually amazing to even be walking and joining in, given he has three brain tumors, a tumor on his spine and one on his shoulder, a feeding tube, gross motor challenges from the NF and a curvature of his spine etc.  This is what I have to remember when I get sad to see him struggling, it is amazing that we even get to the park or manage play dates etc.  it wasn’t that long ago that we were housebound and he was unable to get up off the couch.

I can’t lie though, I live in fear of going back to the all day nausea and vomiting.  I know now how bad it was, because we have had months without it and I honestly feel as though we just can’t go back there.  His quality of life (and all of ours) was so poor.  When I hear him occasionally groaning in his sleep because he is feeling rough and first thing in the morning when he comes into our room groaning that he feels really sick I literally get palpitations, it just brings back awful memories.  I probably shouldn’t be sharing this with you all because you will be sending around the local quack to cart me off to the funny farm! 

Hayden is still coming off the steroids, we are down to 2.5 mg of hydrocortisone twice a day this week.  then next week he will be on 2.5mg once a day, then nothing!!!  This will be the big test, once we are off the steroids totally, how will he be.  The steroids are possibly still causing some shrinkage of his tumor (they act as an anti-inflammatory) thus when we are no longer on them the tumor may cause more problems because it swells again, which in turn leads to symptoms depending on what structures in the brain it pushes on.  This is kind of hanging over our heads also a bit.

Another complication of NF is puritis (posh word for itching!) and for Hayden this seems to be getting worse.  He is constantly itching and scratching and pulling at his clothes because he is so itchy.  It’s almost like he has a tic, he flaps his t-shirts up and down and pulls at his collar constantly.  We are trying soda bicarbonate baths and creams and lotions and he has a heavy dose of Benadryl at night, because without it he literally scratches himself until he bleeds.  So if anyone knows any good remedies for itching please let me know.  It’s driving him crazy.

Sorry, all seems a little doom and gloom, but in reality, right now Hayden is enjoying life and is even going on camp on Sunday for a week!  He is going on the same camp he did last year, called Camp Goodtimes.  It is run by the American Cancer Society and there are doctors and nurses and camp counselors who are trained to deal with sick children.  We are obviously delighted for him, but also a little anxious because the camp is on Vashon Island and is an overnight camp, so he will be away for a whole week!  On the flip side, he will have a fabulous time and we will have some quality time with  Charlotte.

Hayden was also diagnosed recently with mild hypothyroidism, so he has been prescribed thyroxin, which I think is helping with his energy levels.  We are now seeing an endocrinologist (hormone Dr.) because the optic nerve tumor Hayden has is located on the chiasm, which is where the optic nerves cross in the brain, and the chiasm sits above the hypothalamus and pituitary gland in the brain (which are the hormone control centers).  If Hayden’s optic chiasm tumor grows, it could exert pressure on the Hypothalamus and pituitary gland, so we have to be vigilant to any hormone imbalances. For instance early onset of puberty is a common complication associated with optic chiasm tumors. 

BTW If anyone wants to write to Hayden at camp, he would love It!  I know last year it was one of the highlights of the experience receiving mail from his friends and family.  If we start sending them now he should start getting them by next week hopefully!.  The address to mail it to is:  Hayden Lynch, Camp Goodtimes, c/o Camp Burton, 9326SW Bayview Drive, Vashon Island, WA 98070. Thanks everyone it would make his day!

That’s the update folks! Hope you are all well and enjoying the Summer (or if you are from the Seattle area, hope you are enjoying your green gardens and not having to put the sprinkler’s on!)  It’s like where’s Aldo?  Here in Seattle we play where’s the sun/ But unlike Aldo we can’t find the sun!!!!

Today we had to go to Seattle Children’s Hospital ER again.  Unfortunately where Hayden’s g-tube goes into his stomach. has become very inflamed, red, painful and infected and because he is on steroids his immune response is compromised.  Hayden’s adrenal glands are relying on the artificial hormones (the steroids) he is taking instead of producing their own hormones.  So under normal circumstances in a healthy child, the adrenal glands would produce the precursor hormones required to mobilize a fully fledged immune response to the stress that is occurring in his body (i.e. the infection).  However, Hayden’s adrenal glands are sluggish and not working to full capacity at all, so he has been whacked back onto a huge dose of steroids for three days to help his body fight the infection and he has been put on some very heavy duty antibiotics for 10 days.

There is some concern that he may have an abscess (an accumulation of pus underneath the skin) and the fear is that if this breaks down he will be left with a gaping hole in his tummy and a nasty ulcer.  So we are hoping the antibiotics work and that he will not need to have the abscess drained and resected (minor surgery).

The infection is making him feel pretty groggy today.  He is definitely not himself and is definitely feeling sick today.  he has been complaining of nausea all day today and had terrible trouble in the car on the way to and from the hospital due to severe nausea (very like the old days).  Plus Brendon noticed this morning that he has a slight limp returning on his right side and is dragging his foot again.  I hope this is not a sign of things to come, poor kid could do with a break.

He did say to me today that the operation hasn’t worked because he still found it impossible to run!

Will keep you updated about his progress.

Thank you again everyone for your donations, when I sat in the ER for the hundredth time today, I thought how lucky we are that at least there are clinical trials going on to try and cure this crappy disease – thank you for allowing me that!

We want to thank our amazing team, our fantastic support crew and all of you for your very generous donations and for helping us fight Neurofibromatosis.  Because of you we are able to have hope and faith that a cure for Hayden is possible.  Throughout the years of battling NF we have met many parents of children affected negatively by NF also.  We know they would want to thank you also for your continued support for this cause.  Thank you everyone, you continue to blow us away with your generosity and kindness, we are very lucky people knowing such amazing friends! 

P.S. For those of you who have asked if it is too late to donate, it’s not, the website will continue to be active for some time.

“the start, Seattle, 4:30 AM, bleary eyed and bushy tailed”

“The NF Endurance Team cycling the STP for Hayden and Noah”

“the puncture”

“fun on the road”

“204 miles later, we did it! the finish, Portland, with Noah”

Today is the day – 3am and we are ready to go.  Hayden is in good form mostly.  Still very obese with the steroids and having severe withdrawal from the drugs – large moods swings and very emotional.

It’s not to late to donate if you want to, many people have expressed that they still want to give, so forgive me being cheeky, here is the website for those who want http://www.active.com/donate/nfstp2011/BLynch34 

Will update from the road.  Tally ho!

Hayden has been recovering well after surgery, his wound is healing nicely and the neurosurgical team are happy with his progress so far post operatively.  Our main issue has been trying to wean Hayden off the dexamethasone (the highly potent steroid).  He has had just about every side effect you can get while on the steroids (insatiable appetite and weight gain, buffalo hump on his upper back, water retention, moon face, hair growth on his face and back, mood swings, insomnia, high blood sugar, irritability, stretch marks etc.) poor kid.   Which as the endocrinologist explained to us shows that Hayden is highly sensitive to the dexamethasone, but it also means that his body is finding it very hard to withdraw from it.

When a high dose steroid is introduced to the body (e.g. dexamethasone) the adrenal glands stop producing their own hormones (fight or flight hormones which our bodies use to regulate stressful situations) because of the synthetic hormones (the steroid) being taken.  This is why we have been slowly decreasing the dose of the dexamethasone over a 3 week period.  However as we went down from 4mg to 2mg and eventually to 0.5mg, Hayden started to “crash”.  He became extremely fatigued, had a very low mood and was extremely irritable.  We had been warned that he may feel like he had flu symptoms, because the adrenal glands slowly to start to produce the “flight” or “fright” hormones (adrenaline, cortisol etc.) again.  So it’s like the feeling you get after a really stressful situation is over (you feel exhausted because you have depleted your adrenaline stores).   

We saw an endocrinologist who was concerned by Hayden’s adrenal insufficiency and she told us not to stop the 0.5mg, but to continue it and then swap him onto a less potent steroid (hydrocortisone) three times a day, which we will slowly taper down over the course of 4 weeks.  Thus allowing his adrenal glands to be kick started back into working.  She also prescribed a hydrocortisone shot (injection) to give to him should he be in a situation that causes stress on his body (e.g. has an injury or gets sick etc.), because his adrenal glands are not producing the necessary hormones that are required to mobilize the immune response that would be needed in an emergency.  Turns out it’s just as well I am a nurse, I don’t mind giving injections!

Unfortunately, some of Hayden’s symptoms seem to be coming back now we are coming off the steroids.  He has started getting some incontinence again and has resorted to wearing pull ups again   Plus he has woken up several times in the past couple of weeks complaining of nausea and gets a slight limp on the right side when he walks.  We are desperately keeping our fingers crossed that these are either just symptoms of coming off the steriods (some people can feel sick) or that they are much milder than the symptoms than we were experiencing prior to the surgery.  It would be so soul destroying if he has been through this surgery for nothing!

On a happy note, Hayden has been enjoying the company of his “granny” and “granddad” from England and his “nana” and “poppa” from New Zealand who have come to visit.  Plus we managed to go to our cabin last weekend because he was well enough.  It was the first time we have managed to go away in ages and it was great to see him sitting in the sun on the deck and playing with his friends who visited on Saturday.

One last thing.  As many of you are aware, Brendon and I and some other wonderful souls (Hayden’s team) are going to ride the 204 miles from Seattle to Portland (on our bikes) to raise money and awareness for Neurofibromatosis (NF) and the Children’s Tumor Foundation (CTF).  The money raised goes directly to fund clinical trails to help try and find a cure for this crappy disease Hayden has.  Without these trails Hayden’s future looks pretty bleak because NF1 is a progressive disease which tends to get worse in teenage years (there appears to be a hormonal link that accelerates the disease’s progress). 

As you may well imagine after the last 10 months of Hayden being so sick and in and out of hospital, we have had very little chance to get out on our bikes and therefore have done very little training. So if nothing else wish our under carriages luck!  If you would like help, please visit our website on   http://www.active.com/donate/nfstp2011/BLynch34 

We truly appreciate all your support and help, without your generosity Hayden’s future would look pretty bleak.