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.