What a week....

So we are excited to say Max is doing really well with all his treatments and it seems medically things have settled down and got into more of a routine, now if we could only say that for the rest of life, but I guess chaos is a given when you are parenting twin 1 year olds and a three year old.  =)

Last week Max and Molly came down with the stomach flu which was loads of fun, then Josh and I were excited to celebrate our 7 year wedding anniversary this last weekend when we instead got to fight the stomach flu side by side. How romantic right?


Before


We had a few other exciting scares this week leading up to last night when Max had a nasty spill and split his lip in just the right place.  It was gaping open and the side of his lip was hanging off his face, after I got the blood cleaned up I noticed that his teeth pierced his lip and it went through and through. Josh had an evening work event and I wasn't able to reach him so I called in the calvary to help with the girls and rushed Max down to the ER at Children's.  Luckily with him being an oncology patient we get "special" treatment and they had a room waiting for us when we got there and a staff of ER doctors and nurses ready to get started.   It is really a good thing I have a diagnosis for Max's clumsiness because I still cringe as new doctors do their examinations and bruise counts and of course last night was no exception - poor boy was riddled with bruises all over his body and I was sure they were going to call the police on me.   We opted to try to treat him with some medication to relax him rather than the full anesthesia since they would have had to check us in to the hospital overnight.   He like always was the model patient, you wouldn't have even known he was in pain.  He flirted with all the nurses and tried to flash his charming smile at everyone who walked by his room, of course his smile was slightly deformed because of the hole in his lip, but that didn't stop him from trying.  They were able to get him fixed up with 4 intricate clear dissolvable stitches on the outside of his lip (the inside should heal on its own), he was wide awake and watched the whole thing, he held still and did what he was asked except he kept trying to give the dr kisses while she was sewing so we had to take a few kiss breaks.



After

 He came away with stickers, bubbles, new stuffed animal friends and a whole ER full of staff ready to take Max home with them.  A blessing was the timing of this, his platelet counts are at the highest they will be in his treatment cycle so no need for transfusions or special treatment for that and he has been taking a prophlayctic or preventive antibiotic so we didn't have to have him admitted for IV antibiotics. No new prescriptions needed just his normal oxycodone and lots of ice cream (to help with the swelling of course). We didn't have to spend the night and were able to get home at a somewhat decent hour. We are hoping that this spill doesn't change his charming smile, but so far you can hardly even notice the stitches when you look at him.

Tears of Joy…

 

Our family has been so touched lately by the support and gifts that we have received.  From the beginning we had so much to worry about when Max was given his diagnosis and we knew that we didn’t have time or energy to worry about things that we couldn’t control ourselves and had to cling tightly to God’s promise that he would provide for us.

We are here to say that we have had so many opportunities to share tears of joy lately.  We have been so well taken care of by friends and family who have cleaned our house, provided amazing child care, showered us with encouragement, calls, cards, emails, shared their love and attention with our kids when we weren’t able to, surprised us with groceries, date nights, tanks full of gas, care packages, toys for our kids, and of course all the prayers.

We have been blown away by the support of all those who have come in contact with us and we are soo grateful for each and everyone of you!

 

Health Care Providers Council of Pierce County .

Josh here for once, Kari usually updates the blog for us, but I personally wanted to give a BIG thank you to the Health Care Providers Council of Pierce County. We were completely shocked, overwhelmed and amazingly blessed by the gracious gift that this group was able give us yesterday at the monthly meeting.  Thank you so much for your contribution and willingness to help our family. This was a wonderful thing you all did for us and we appreciate it so much! - Josh

Eating...


 

Max with a feeding tube in the NICU after birth

Max is such a trooper but it is a bummer to see Max not enjoying his food like he used to. He always had such a great appetite and would always clear his plate (and both sisters' plates if we would let him).   

He lost 5 pounds between the surgery and chemo which is quite a bit for a little guy.  Molly has now passed him up in size. We were told that if he loses another pound he gets a feeding tube placed, luckily he was able to maintain his weight another week, we were fully expecting  the loss this week given his lack of appetite.   This might look disappointing from the outside and will be a constant reminder of his sickness, but it may make life a little easier for everyone for the next little bit.  We will be able to give him all his food, meds, and fluids through the tube and hopefully resolve some of the battles we have been facing.

So for now we will try to figure out how to cater to Max's new chemo palate to get more calories in him.  The foods he used to like no longer taste good to him. This week he has really enjoyed eating salsa and hot sauce!  Since he isn't able to communicate with us meal times are pretty difficult.  The doctors also think he is battling reflux along with the nausea and so we have been trying to play with different meds and dosages to try to treat that symptom.  We got some helpful tips from doctors last week on how to increase his caloric intake by adding fat (whip cream, sour cream, butter, etc.) to all his foods.  Sounds like an awesome diet huh?!



Max with a tube in after surgery






Chemo - Round 2



Max playing some Xbox 360 while
waiting to get hooked up



We made it through round 2! Max did a great job today, we were able to try to shave off a day of treatment by combining some of the infusions instead of running them back to back.  It made for one long day, but at least its over and he doesn't have to endure a second day.  They continued to monitor all his vital signs every 15 minutes all day.  He had several episodes where he developed high blood pressure and a fever but we were able to make it through without having to be hospitalized but we will continue to keep a close eye on him at home. We were able to get a crib this time so Max could take a brief nap in between  interruptions.     

We also had another evaluation with Dr. Park, the neuroblastoma specialist and head oncologist today.  She was so pleased with his progress.  When we were first seen last month he was scored at a 7 on a scale of 1-10 for the severity of his OMA symptoms, in his reevaluation today he was scored at a 4. This is great news!  We are going to try to back off on some of his steroids to see if the progress continues and some of his side effects subside. We are also going to try to limit the amount of dr appts, and lab visits the next couple weeks so we can try to get him back on a more normal sleeping schedule. Although they still want him seen by OT/PT and Speech Therapy as much as possible to continue the progress while we play with the dosages on his steroids. We are still battling the insurance company on several different issues including his chemo treatment and the coverage of his OT/PT and Speech Therapy, hopefully now that the holidays are behind us we can make more progress.

Daddy rewarded Max with some cheddar  "chemo" corn