Sorry for the delay in update. Dylan is still in the hospital and the internet was down at RMDH over the weekend, then the laptop crashed AGAIN!!! Well, Dylan was taken to the 14th floor when he was admitted in isolation, off the pediatric floor. The nurses there were lovely, I don’t think they get children up there too often so they really enjoyed having Dylan in their care. On Thursday afternoon, the infectious diseases team came to see Dylan and they disagreed with Dylan actually having shingles as he has never had chicken pox before. On Friday morning the doctor came in and explained, that because no swab was taken in Urgent care and that now the 5 spots had crusted over, that there was no way of telling if in fact it was shingles. The most likely scenario is that it was some other form of herpes like shingles as there are different strains of skin herpes that can arise when the immune system is compromised such as in Dylan’s case. So Friday afternoon, Dylan was taken out of isolation and transferred to the pediatric floor after a blood and platelet transfusion. Dylan is still neutropenic with an ANC of 0.3 and has tested for 3 days for a blood infection. This morning they put Dylan under anesthetic and removed his entire medi-port, Dylan was distraught over the decision. A temporary line has been placed on the other side of his chest that will remain there until his blood tests show that the infection has cleared up, then he can be scheduled for a surgery date to have another permanent medi-port placed. An x-ray was taken to check that the line was placed correctly and by the time he returned, he spent the entire afternoon playing with Cain on his hospital bed until late evening. Dylan will continue on 4 types of antibiotics until his blood tests show the bug has been destroyed and until he is no longer neutropenic. I spoke with Dr Modak today who told me that he has scheduled Dylan to have radiation starting on Wednesday which will be on the main abdominal tumor site and the lymph node site, both of which were removed during surgeries. The radiation team will do a simulation run tomorrow to prepare for Wednesday’s first session. The radiation will continue twice a day for 7 days, but not on weekends or on Christmas day. Dr Modak also explained that despite my greatest efforts, that Dylan will not recover without a stem cell rescue and that he wants to do the high dose chemo after the radiation followed by a stem cell rescue. The chemo combination will be Carboplatin, VP16 and Ifosfamide. So now it appears Dylan is likely to be in the hospital for 4-6 weeks, by the time he has the radiation, chemo, new medi-port, stem cell rescue and for his counts to recover. Tim and I are of course disappointed that we cannot be out for Christmas and New Year as a family but I have decided that we will not let this get us down. I went and bought a tree for Dylan’s hospital room today and he just beamed with excitement. Dylan just surprises me everyday, he gives me so much strength. This morning he was crying before he went into surgery, then by lunch time he is playing happily with his brother through to the afternoon, and by night he is bursting with excitement over a small Christmas tree, even knowing that it meant Christmas was going to be spent in the hospital. I will take some photos tomorrow so you can see the smiles for yourself.
Thank you to Cheryl from Angel wings who emailed me the photos of Dylan’s ribbon that was placed on the candle lighters tree in WashingtonDC . She did not know who put it there, so thank you to who ever did that it Dylan’s honor. Click HERE for details on Candlelighters.
Here is Jody’s blog link, who is fund raising for Dylan by losing weight, please visit her by clicking HERE.
Imke is a Dylan supporter in who has been following Dylan’s website. I cannot read German but Imke emailed me and told me that the website is about a kind of "Christmas custom" done in GermanyGermany which might be translated as gnomeing. The custom is about giving little presents to friends. Imke thought instead of giving small presents to friends, people could pay small amounts of money to help with Dylan’s fund raising. The site is www.wichteldylan.kulando.de - "wichtel" means "gnome" in English. Click HERE to visit the site.
Speaking of fund raising, I wanted to say a big thank you to Megan, who raised almost $1000 for Dylan’s fund by having her family and friends donate instead of bringing gifts for her 40th birthday and her daughter’s 1st birthday. Thank you so much.
Remember Jess who was riding her bike in New Zealand to raise funds for Dylan by sponsorship, well she made it 160kms, around a great big lake called 'Lake Taupo' in 7 hours and 40 minutes! Well done Jess and thank you!
