Friday afternoon Maila update

Hello Everyone!! Here is the latest update from Tamara, Miss Malias mom ~ thanks for your continued prayers, support and cards you are sending to Miss Malia ~ I soo appreciate you!!

We are home – yet it wasn’t entirely a smooth transition.

Firstly, Malia had a couple of really rough days at the hospital. Health wise she was doing great – it’s just the emotional and mental toll that was the issue. Wednesday was going to be a very big day of tests. She had her renal test which simply evaluates the way her kidneys are functioning. They inject a small amount of radioactive material in her (no biggie right?) and then draw blood and specific time intervals to see how her body is getting rid of it. The most traumatic thing about it is that they cannot inject and draw from the same access so she needed to have an I.V. in her hand. YIKES – just the sheer thought of doing that do her now still makes me shutter; she is absolutely terrified of needles now and her resistance and tantrums are horrifying.

Anyway, to head that off, Kyle had made a request early in the morning that they give her Ativan (an anti-anxiety medication which they added to her list of available drugs after the first maniacal tantrum back in July). So after her Ativan, which by the way she gets totally high from – I’m mean you cannot even let her walk because she’s so unbalanced and loopy. Once she had her meds, they inserted her I.V. and gave the Neupogen shot. It still took three of us to hold her even with the Ativan! Once it was done she was fine and we proceeded with our day. Now by the time 3:00 rolled around she still had not taken a nap and with very little sleep the night before in conjunction with coming down from the Ativan we were entering very unpredictable mood territory. It was now time for the final blood draw for the GFR test and also for her CT scan. The CT did not happen – another tantrum did. L So we rescheduled for Thursday. Once we were back in her room she crashed out until she was rudely awaken. We had to re-access the port and take the old needle out as it wasn’t working – hence tantrum number 3. During this one though, she managed to tear out the I.V. in her hand and blood was all over me, her, the bed, and the floor. Luckily the PCT noticed it right as it happened and immediately started applying pressure to her hand. Needless to say, my BizEMoms t-shirt is now a night shirt.

After a much needed nap, Malia woke at night in a fairly chipper mood. She ate, watched TV and went to bed. A few hours later, our roommate woke crying which also woke Malia up and then she couldn’t get back to sleep until 5:00 AM. She slept in on Thursday and it started out to be a glorious day. We received news that her ANC was super high and there was no need to give the Neupogen shot anymore…EVER!! YIPEE! I cannot tell you how relieved Kyle and I are that we do not have to do that to her every day anymore.

Because she slept in, her window of being able to eat quickly diminished because of her rescheduled CT scan. So, yep, you guessed it, she had another tantrum because she wanted to eat and couldn’t. Then to make matters worse, we were giving her more Ativan to help insure that she would be cooperative with the scan so she wouldn’t have to be sedated and right as we started the infusion, the IV pump showed there was a line occlusion…AGAIN!! Yes, they had to re-access the port yet another time which of course, brought another horrible tantrum which is frightening to see and hear. Once that was done, she received her medication, she had her CT Scan and we were discharged last night at about 5:45. Thank God!

Well it was good for a while – we got home about 7:15ish and she was out like a light. She woke about 9:00 and all seemed well…until she said she was cold. HOLY CRAP – are you kidding me?!! Yes, she spiked another fever and yes Kyle had to take her back to the ER to do blood cultures and check her vitals. At least this time her ANC was super and her temp went back to normal so they were able to come home. She’s been sleeping a lot today and I keep checking her temperature – which remains normal. Let’s pray it stays that way because it’s Friday and if she spikes again we have to go to the ER again. Her next appointment is at the clinic on Tuesday for a follow up and she also had a post therapy hearing test that day as well. The humungous silver lining to all of this is that MALIA IS DONE WITH ACTIVE CHEMOTHERAPY!! She received her final push of Vincristin in the hospital and so now she is done and is in the monitoring phase. HIP HIP HOORAY!!

She’s got two different blood cultures growing in the lab now – they don’t officially rule out bacterial infections until there’s negative growth for 5 days. If anything comes up, we’ll let you know. But for now, let’s hope we have a very quiet weekend and do not have to go to PCH until Tuesday. Tomorrow we will be having family pictures taken through HopeKids – an organization that helps support kids with cancer and other life threatening illnesses. Other than that, we do need to keep her close to home even though her ANC is high.

We’ll keep you posted.

Many hugs and much love to you all!