Where does the time go......????

It is hard to believe that it has been so long since I have updated Makhi's site. It just crazy how the weeks and months have slipped away!!!

Since my last update allot has happened. Makhi's medi port line snapped. Back in October when we went for a IVIG treatment the nurses were unable to get any blood return when accessing the medi port so Makhi was sent down to get a X Ray which showed the line had snapped in half. So the 2nd week in Oct Makhi has surgery to remove it. Makhi's oncologists and I both agreed it would be best not to replace the port that he had. Although we may in the future have to replace the port for now his little body needed a break from it. He had the port in for almost 3 years and it lasted much longer then it should have.

Makhi also has celebrated his 5th Birthday Nov 20 !!!!!! All he wanted for his Birthday was a talkin Thomas and all I wanted was him to be off of ACTH (steroids).
Well needless to say Makhi got his Talkin Thomas and Mommy was unable to get Makhi off the ACTH without some tremors in his hands and some bad bad mood swings. So for now we have had to go back up on ACTH .08 and we are going to hold steady there for awhile. His little body is just not ready.... Which brings us back to WILL MAKHI NEED MORE CHEMO????? ARE HIS T-CELLS JUST NOT RIGHT YET? Who knows at this point?? It is the wait and see game that I HATE.... Since the increase back up on the ACTH he seems to be doing better the shakes in his hands are getting better and so has his behavior.



Makhi has made HUGH strides at school this year... Hooray for Makhi!!! He is learning so much at school this year he has even made himself a best friend at school. The 2 of them are so cute together. Makhi even wanted to go Christmas shopping for his friend this year so i let him go and get him some gifts. You should have seen his wrapping of the presents....OH MY LOL I let him do it all by himself and he was so proud of himself.It was very cute needless to say LOL....


THERE ARE SOME FAMILIES THAT ARE IN NEED OF OUR PRAYERS AND THOUGHTS

I received a phone call last week from my grandmother telling me that my step mothers best friends granddaughter was just DX with stage 4 Neuroblastoma.

ISABELLA RINIER is her name and she is just 3 years old . Isabella was DX with stage 4 Neuroblastoma 2 days after her third birthday. Bella has a tumor on the adrenal gland of her left kidney. Of course there are cancer cells elsewhere, also. She has started intense chemo and will have a stem cell collection done this coming week. After chemo, she needs to have the tumor removed and then a stem cell transplant.
Somewhere in all of this , she will also receive radiation. It has been heartbreaking to say the least. The family of Isabella is staying positive and relying on the power of prayer. She is on many prayer chains and I would love if we could add her to more

Also my best friends sitter Kayla is due to have a baby boy around Christmas and he has been diagnosed with Lethal Multiple Pteryngelum, it's a rare genetic disorder and the doctors give him almost no hope to live, but he's... growing and his heart is beating so I would also ask everyone who reads this blog to pray for Kayla her son and family.There is power in prayer!!!



My family and I wish everyone a Merry Christmas and a Happy and Healthy New Year!!!!