Next appts

Haven went to Oncology on Friday. They were very excited to see her. I bought her a new outfit to wear and she was decked out in black and hot pink - even socks and shoes matched! She was very excited to go in and see everyone. I put her port lotion on before she left so that by the time they got there her chest would be numb. Not like it matters for pain but she can feel the pressure and I think it just gives her some comfort when seeing that needle come towards her chest. To relieve my stress and anxiety - I do not know Haven's numbers anymore. I am usually informed if something is out of the ordinary or I get a report from Haven's pediatrician.

Haven's immune system is holding pretty well - although I'm not exactly sure what that means. She will receive another dose of IVIG in a few weeks to help give her a boost. When talking with the doctors they are always amazed at Haven and how well she has handled all the toxic medications they have thrown at her. Her body just fights right back. She has a force field around her that is impenetrable. It's amazing because I've never even taken Haven in for a cold or flu and she hasn't had an immune system for 2 years.

We had originally thought that the chemo treatments were bringing back the sensation of pain but over time I have watched Haven and now know this is not the case. When she should be hurt, screaming, and crying she just gets mad and yells at me for being concerned. This weekend she bumped her head on the coffee table while trying to get the dog - left a little mark - but if I wouldn't have heard her hit the table I would've never known by her reaction. Then while playing the Wii she bashed her hand in to the corner of the table so hard that it made me jump off the couch. She kept on playing like nothing happened and when I asked to see her hand she just got mad at me. So I left it alone.

We have our 6 month sleep study this weekend at Mt. Washington. Haven has to be down there by 8pm and is usually finished being wired up by 10pm. Then I should arrive back home by midnight - Kris always stays with her because I can handle the 6 hours of driving better - Then I will get back up at 4am to be there by 5:30 to pick them up. Our Sunday is always a waste after sleep studies because everyone tries to catch up on sleep but I am happy they have always accommodated me with a Saturday test.

Sunday will be a recovery day and then Monday Haven has to be at MRI by 7am. This will be her MRI for the Brain, Abdomen, and Pelvis. The Brain was added at my request due to her high prolactin levels. Abdomen and pelvis will be her normal 4 month scans of the cancer and tumor areas. This ensures us that her tumor is still stable and nothing has moved around.

After this Haven will go on an every 6 month MRI scan and every 4 week Oncology visit. The goal is to still monitor everything she does and everything that changes but to get her out of the patient mentality. In hopes that her will and mind are more powerful than the disease and she can begin to grow and her body can accept the changes that the chemo has done to her ROHHAD symptoms.

Pulmonary and Endocrine are still seen every 6 months - so we'll set up an appt with Pulmonary after the sleep study. We have an Endocrine appointment but I just can't remember when. I'm sure it's this month some time! :) I'll have to call over to their office for a reminder!

That is about it for our updates. Love to all!