Last Intragam for a while at Gosford Hospital

Well last Friday was our final intragam at Gosford Hospital.

That place is like home for us. Harrison never gets upset to go for his infusions as he likes to play in the therapy play room, and the staff are wonderful. I got upset leaving as I wish we could have his BMT done there rather than at Westmead, and although I know that we are "at the end of September" not having an admission date makes it hard on the family. Its frustrating knowing we have a time frame but even as close as a month out no actual admission date.

I also know that each and every nurse that looks after Harrison feel a bit as I do - worried about how it will all go and hopeful that it is a success at the same time.

This Friday we head off to Westmead for some blood work and a visit with our favourite immunologist ( our only immunology doctor up until now really but a fave none the less ) Dr Sam Mehr. We will check liver function again which hasn't been so fantastic lately.

In the interim I am packing up all of our belongings to put them into storage so that while in hospital I can try to reduce costs as much as possible  and rent is the biggest expense I have to pay. Once we look like Harrison is well enough to come home, I will look for a house for us to live in then. It is hard leaving such a lovely little piece of country gold. I know though that the water quality here is not good enough for Harrison post transplant and no amount of "solutions" have come to give us enough peace of mind that the water is ok long term for his use. Best to minimise any risks to him coming home from hospital and get a new house on town water supply.

I have included a video of Harrison to show how amazing he is - blind in left eye, limited tunnel vision in the right eye and can still walk on stilts - waiting for his infusion to be hooked up and run. My angel and shining light.
We are about to run a series of auctions and sale online via the my cause page - https://www.mycause.com.au/page/108384/harrison-family-hospital-help
and the Harrison's Place page on facebook - https://www.facebook.com/Harrisonsfundraising?fref=nf

This will raise much needed funds for Harrison's time in hospital to make his and his 3 siblings lives just that bit more bearable while Harrison is unwell and incapacitated .... Buy something from the sale if you can - all proceeds will be placed via the MyCause page .

The start of something great....

For a long time I have wanted to be in contact with families in Australia who have kids or are living with immune deficiency themselves.

The IDFA Immune Deficiency Foundation of Australia provides just this source  ( http://www.idfa.org.au/ )
do exactly this. Our immunologists are a big part of this foundation already and they have been amazing at putting us onto a Facebook site to chat about living with a child who has immune deficiency.

On top of that I really started to get out and look for permanent housing options for both Harrison and Sterling ( who has an austism spectrum disorder)

We have moved 5 times in 8 years so far, and the house we are in needs a lot of work to make it possible to come home post transplant - so I was given the details of Habitat for Humanity NSW ( http://habitat.org.au/nsw ) and have asked them if there is a way that they could  possibly help us to own our own home. This looks like it might be an option if  it is possible to find a suitable block of land, and get the support they need to run this as a project. Maybe just maybe I can achieve a dream of home ownership and a permanent roof over my 4 kids heads. And the prospect of  rolling up my sleeves to help build  house for us is, well, exciting.  What a nice feeling that would be . Security!

Having a kid like Harrison is time consuming and costly and often the other kids - as they do in our family, go without some things for families to manage to make ends meet, and the parents make lots of sacrifices to makes ends meet.

In looking forward a house for us first is my priority - then I would love to build on that for turning Harrison's Place into a foundation. We as a family can then  have a place for kids like Harrison and families like our own to come and stay and enjoy a mini holiday - preferably as a farm stay - free. To give them a chance to have fun quality family time away from the pressures of normal life, and to do it at no cost to them, to maybe even partner with local restaurants or organisations and give the parents a much needed break too even if that was simply a dinner and special time together.  I love what other organisations do to support families, - healing them connect together to be in touch with others in a similar position. There is so little thought that gives financial assistance, or places for families to go for a much needed down time. I know it can make a difference. Not just for kids who are very sick but for adults who have kids, where the adult is living with PID. Those kids then need the fun and support and a break away.

We have been so lucky and blessed in our lives, it is time to work on getting Harrison well and then giving back once he is on a road of recovery. I think it is the start of something great and is something that as a family we can build together.

Bone Marrow Transplant No 3.

Well Since last post we have had a crazy couple of months.
The port insertion went in and has been a true blessing for delivery of intragam each month. Harrison has been fairly well through all of this .

We moved! to a cute house on an acre. and then had amazing storms and lived with no power for 5 days.
During this stormy period I received a call advising that Harrison's enzyme count was dropping.

Sadly I knew before the words were said that Harrison would need another bone marrow transplant, as technically this is his first graft failing. So rather than wait for it to fail completely and him become very unwell, and those dastardly toxic metabolites to creep up in number and do damage again, we agreed to transplant Harrison in the beginning of our Australian summer.

What seemed like the slowest couple of weeks passed with no more news, yet everyone around us as anxious as we were to meet the new team of doctors who would do this process. Then the call came and within a week we met our new Doctor, Melisssa Gabriel. Along with the original clinical nurse consultant we had Kay and a new ( well we had met her before but only briefly ) Immunologist, Melanie Wong.

We talked about the dangerousness of giving Harrison chemo, and the two types he will be given. Thankfully I don't recall the names or I would be playing Dr Google probably to our detriment. But we also talked about Ella being Harrison's donor again. Ella was asked as soon as I had the call to consider her options for being a donor, and said yes. She knows that despite her great cells it is Harrison's body that is not working well, and that should anything go badly it would. never be her fault.

Ella then went down a week later for independant review, and passed this with flying colours. We filled out a rheem of paper work, and I had to laugh and nearly cried at the same time, when the BMT doctor told Ella it was very very rare of her to tick "have you been a bone marrow donor before?" questions box with a  yes.

We then got a call to give us a date ( after another couple of week wait ) . Last week of September. It is coming along much faster than we would all like.
The reality of this means we have to pack up and store the house contents and give up our rental home. I cannot afford the costs of renting, kids and school, extra hospital costs of food, etc and the extra treats that the kids will need to keep them sane . Its going to be very hard. But a house can always be found again. It puts me under a lot less financial pressure to manage.

Chemo will put Harrison under immense strain. He is having reduced cycle chemo but for him it would be like a fully intensive round. Ada Scid kids are particularly sensitive to chemo it seems. He will end up with mucositis ( infections and sores in the mucous lining of mouth throat etc.) will probably have feeds done via nasal gastric tube, will have red blood cell and platelet transfusions to keep him going until the new bone marrow cells take hold.

As with last time Ella will have her harvest same day as Harrison has his transplant. As with last time my mum steps into my role to care for Marlie, Sterling and Ella while I go into hospital with Harrison - an expected 3 month stay. I will now try to update more and add photos as we go about this process. Second transplants for this are very uncommon. We hope to help at least show that its a process that works ok.

Updates on eyesight and immune function

Well since August, we had a few bloods taken and Harrison's immune function continues to dwindle. Doctors had him on IVIG temporarily to work out if his immune function would improve. It did but only while receiving IVIG. As soon as it left his system his numbers drop, so IVIG for the long term it is. We went through discussion of having it via a PORT, by monthly canula insertion or by subcutaneous I fusion( into belly fat)

As Harrison is extremely hard to canulate we tossed about a PORT vs sub cut
The port insertion won due to his extreme hatred of needles. Doing subcut is two - three times a week and I would learn the method to do this. So for now until he learns to cope better with needles he underwent surgery to place a portacath in his chest wall that doctors access monthly to run his IVIG.

So far this is working very nicely. As each month passes he gets better at this - it was inserted in October.

We are now counting down days to 13/3/15. We go for a day visit down to kids hospital to see his bone marrow team, immunology team and have a repeat eye ultrasound. Sadly we discovered right on Christmas time that the tumour he has in the left eye has started to grow in his right eye also. It was a for way back at the middle of feb and then July last rate, but it is now visible to the opthamologist when he checked his eye in December.

I am dreading this day. It will be a long day, bloods have to be taken & this ultrasound. Both tests mean I get to hold him down kicking and screaming for them. I also want to play ostrich and not think about this right eye.  I continue to scour the internet for any options to reverse the tumour in the left eye , and stop it growing more in the right. So far anything trial like I have found is not possible for Harrison, due to the continued immune deficiency and that the overall degeneration of his eyesight is too advanced to be considered for trials. That and he is only 7.
Oh well .. I keep looking , hoping , and praying that we come across a miracle.

This year Harrison's class have transitioned to his siblings primary school as a satellite class so educationally he is doing nicely and he has made some great little friends. There are always blessings in life.

Next post will be after the bloods and ultrasound to update on his progress

And while we are at it keep going strongly on your journey Katlyn... She has  had her bone marrow transplant and is waiting in T cells to engraft. We keep you in our thoughts  and pray you get grata news very soon!

Update - Eyes,Immune Function, Holiday & 2015 look ahead

Life as always seems to fly by so fast. Already it is a month since we did our life changing USA Disneyland holiday.

Two weeks ago Harrison has his portacath inserted (by surgery at Westmead Childrens hospital) into the right side of his chest so it can be easily accessed to delivery his intragam (immunolglobulins) every month. Harrison's immune function continues to be low, so this infusion gives him an immune system for a couple of weeks per month. It is not a perfect solution and not a fix , but the best of a number of choices, and will be a life long product Harrison will need. & as Harrison has very fine difficult to access veins we have opted for this port instead of canulas every month.

Prior to that we had a wonderful Disneyland adventure. Pictures will follow this post.
We visited California, Disneyland, Colorado and the Grand Canyon and Yellowstone National Park and Legoland. We saw extreme heat and drove through snow. Rode on many rides and celebrated Halloween Disney style
It was a holiday that delivered what it was intended to do, created a visual memory for Harrison and his siblings, so that when Harrison can no longer see, we all can talk to and with Harrison about this amazing holiday we had.

Of course, with such a holiday comes the realisation that this indeed is his lot in life, and while amazing, there were moments that were tinged with real sadness. Sadness that he wont be able to return to see this again in his lifetime, that even if we did go back to Disneyland, he wont be able to see it like he did this time, and that this really is a final farewell in the path to losing his vision.

The cataract has now completely overtaken the the left eye completely , and suspect the tumour has continued to grow. December 12 marks the next Eye doctor appointment and the day we find out about the surgical appointment we have in April 2015 for Harrison's eyes.

Harrison now only has 5 degrees vision in his right eye. He has a strange fixed focus on the left eye, and a glazed appearance always. Until recently noone really noticed his eyes and now everyone notices.

Next year there are plans for Harrison to go to the "big kids school" as part of his schools Satellite class program, which is exciting that he and his class mates will be able to have this fabulous opportunity.

Many changes are afoot for our whole family next year, and while Harrison has his big school adventure his siblings will all take on new paths also, high school for the oldest Marlie, a new support class for Sterling and Ella will go up into year 4.

I cross all fingers that 2015 is a better year for our family medically speaking and that we can plan a new adventure with lots of sensory input for Harrison to enjoy.. Maybe we go south to Tassie this time.!!
For now we are busy putting up Christmas lights and trying to make Christmas as memorable as possible -just in case this is Harrison's last Christmas to see things :) I feel an expensive light bill coming up but it will be worth it as he adores Christmas lights and decorations!

In case we forget to write Have a MERRY CHRISTMAS to ALL!!