#rhabdoidtumor

[swimmiey]

Today is the last day of February, which means it's rare disease day. A disease is called rare when less than 5 in 10.000 people are diagnosed with it, and it has to be life treating or chronic. In my case it means I have multiple rare diseases. The first one was a rhabdoïd tumor in my right kidney, about 1 in 12.000.000. After that I've got a sinus thrombosis and a vestibular schwannoma, both about 1 in 100.000. Becasue of this is developed idiopathic intracranial hypertension, also 1 in 100.000. A DVT in my arm, not very common (don't know the exact number). Also I have renal tubular acidosis and fanconi syndrome, causing severe electrolyte imbalance. Although isolated proximal (type 2) or distal (type 1) tubular pathologies are well characterized, a combined pathology leading to type 3 RTA is extremely rare. There needs to be more awareness for rare diseases and the complications they can cause. ------------------------------- #imawarethatimrare #raredisease #rarediseaseday2018 #icareaboutrare #intracranialhypertension #sinusthrombosis #vestibularschwannoma #rhabdoid #rhabdoidtumor #armthrombosis #pseudotumorcerebri #fanconisyndrome #butyoudontlooksick #rarediseaseawareness #rta #renaltubularacidosis #renaltubulardysfunction #electrolyteimbalance #hypokalemia #hypophosphatasia #lowpotassium #lowpotassiumlevels #lowphosphorus #lowphosphate #chronicillness #invisibleillness #spoonieproblems #weneedacure #totiredtofunction #chronichope

[braceletsforamelia]

🎗Just added to the auction album with a starting bid of $20 is this gorgeous crochet mermaid tail from @sarahscraft . A huge thank you to Sarah for your continued support 💛 Link in bio ☝🏻️ go place a bid! 😘 #inspiredbyameliab #braceletsforamelia #littlelukeslegacy #crochet #mermaid #crochetmermaidtail #handmadeau #auction #foragoodcause #morethan4 #rhabdoidtumor #childhoodcancer

[pilotsforchrist]

This is 1 year old Tenleys Norman. So much joy from this little lady. You continue to brighten our days, even when they feel so dark. You are the reason for our determination and perseverance! We love you so much! #sappysaturday #tenleyryannorman #prayfortenleyryan #rhabdoidtumor. Love Jordan❤️

[braceletsforamelia]

🎗Today's post is especially difficult to write - not just because I'm a mother of three young children, the youngest being 6 months, but because once again childhood cancer has hit very close to home and our little fighter was the same age as my youngest baby. In December last year our friends Jane and Josh welcomed their second baby into the world, Luke. At 10 weeks old Luke was diagnosed with a rare and aggressive form of childhood cancer called Rhabdoid Tumour. This type of cancer commonly occurs in infants and toddles, the average age of diagnosis being 15 months. The symptoms of Rhabdoid Tumour are usually a lump or a mass in the abdomen. In Luke's case he stopped kicking his legs which. At just 3 months old Luke started his first round of chemotherapy and received his second blood transfusion at @westmeadkids . During May Luke underwent his third round of chemotherapy and was able to spend a few days at home with his mum, dad and older brother. While at home his temperature spiked which is not a good sign in cancer patients as the drugs used in chemotherapy weaken the immune system making it harder for the body to fight infection. Luke was taken to hospital and received antibiotics via IV and it was discovered that he also needed a platelet and another blood transfusion. Later in May Luke had a MRI scan to check on the progress of this tumour which showed it had grown in size and was pressing against his spinal cord. June marked Luke's 6 month birthday and he had beaten the odds to reach this milestone. However it was discovered that his cancer was rapidly growing and spreading. It had spread to his brain which was causing pressure and he started having seizures. Sadly on the 28 June, peacefully in his sleep, Luke passed away. A fund has been set up to honour Luke and to raise funds for two charities close to Jane and Josh's hearts - The @childrenscancerinstitute and The @leilarosefoundation . You can donate to Little Luke's Legacy by clicking the link in my bio. #inspiredbyameliab #rhabdoidtumor #childhoodcancer #childhoodcancerawareness #itsnotokay #findacure

[swimmiey]

#true #raredisease #awareness #kidneydisease #kidneyfailure #iih #intracranialhypertension #pseudotumorcerebri #vestibularschwannoma #acousticneuroma #childhoodcancer #childhoodcancersurvivor #rhabdoidtumor #kidneycancer #sinusthrombosissucks #cvst #cerebralvenoussinusthrombosis #chronicillness #invisibleillness #spoonie #spooniestrong #imawesome (bij Isala Ziekenhuis Zwolle)