The Weekend We Almost Lost Max.....

 After Max had his #2 Vinblastine chemo treatment he really struggled with constipation and on day 9 (10/9/19) he started experiencing really bad GI tract upset. He was vomiting off and on. He wasn't eating normal and was really picky about what he wanted to eat and he was generally off when it came to his stomach and pooping regime. He became very constipated and we were going days without pooping and praying to do the poop dance for many days. There were dozens of people following along on his journey and anxiously awaiting news of a good poop (it's totally true :).

During this time he was still in pain from what we thought was muscle and joint pain, but would later find out was a disk issue in his back. We went in for his #3 Vinblastine Chemo treatment and wanted to have tests and scans ran first to see if his cancer had spread so we could try and pin point what was happening with his tummy and pain bc we weren't sure we wanted to do this next round of chemo.

After running tests (see blog post about this) we decided to do the #3 Vinblastine chemo treatment (10/15) since it seems to be holding his main tumor stable. We were loaded up with a whole new med regime to help with his pain and a new med to help his GI tract.

Once Max started this new medication regime, his pain has been remedied and he appears to have no Ondansetrone (GI tract med), bc that can also give diarrhea.

discomfort however, he started having horrible diarrhea almost immediately. We aren't sure if it's the chemo (which can give them diarrhea) or if it is the

We had to buy depends diapers on 10/16 bc he was sharting. (Max is around 50lbs and he is wearing women's size s/m. We also put a women's size xl on top of that for extra coverage). He began sharting (farting and poop spurting out). It was uncontrollable for him. We started him on the depends diapers and he would poop in his pants (not full blown poops but the sharting). He has now started to leak a little pee in these as well (he was never incontinent before besides 1 or two very rare occasions). This went on for days.

He has decline rapidly with wanting to eat and is now on strict kibble since that is the only thing he will somewhat eat. He is sleeping most of the day and still being picky with food. Again, he is experiencing straight diarrhea really bad (probably 10 times a day). His butt has become extremely raw so I started using neosporin on his backside to help but switched quickly over to diaper rash ointment (which was a miracle for us and cleared it up within 4 days).

Thursday, 10/17, his legs started to swell and his abdomen starting filling with more fluid (almost twice what it was on 10/15). We took him to the emergency room at MSU to see what the swelling was about and we were told it was because he is on bed rest due to his disk issue to his body is having a hard time circulating the fluids. We now start leg massages (from the toes up to his thighs) along with warm compresses 4-5 times a day.

Friday, 10/18 was much of the same. Not wanting to get up or move. Only wanted some chicken to eat but hardly ate at all and just overall lethargic and tired. He is drinking well but still has diarrhea. He started peeing fully in his diapy today. Could be all the water he's drinking and not wanting to get up or the extra fluid in his body trying to leave.

On Saturday, 10/19 he's still fully peeing in his diapy but we think it's bc of the fluid moving through his body and the amount of water we are giving him to avoid dehydration. He is not wanting to eat anything at this point. We took him off the GI tract med (Ondansetrone) bc we think that could be exacerbating his diarrhea. He wouldn't eat anything today but our friend Amy Pluth suggested lean burger and that was a winner! He gobbled that up with rice on Saturday night (thanks Amy!). We were thinking we were going to have to put him down because at this point, he isn't moving. When we need to take him outside, he won't even get up. We have to lift him to go pee (although he is going in his diapy). His legs and abdomen are still swollen and he struggled to eat most of the day today except for the late night lean burger. We made an appt with MSU for Monday (that is when the oncology team returns from their conference) and if he stays this way all weekend, we will most likely put him down on Monday. It is really hard to see him this way and this is not the quality of life we want for our boy. We talked about how we'd bring his bed with us and his bankie and what our plans were for Max (we decided to have him cremated).

Lots of praying and talking with God and asking for clarity. We aren't sure if these are symptoms from chemo or a downhill spiral from the cancer so trying to differentiate those two are near impossible. When we meet with the team on Monday at MSU, we are hoping to get clarity. Also, praying that God gives us clarity so we know what to do. We have asked God for clear signs as to what we should do. We just want to make sure our boy has a good quality of life and that he does not suffer so we are praying and keeping that in the forefront of our minds.

On Sunday, 10/20, Max woke up bright and alert!!! A big turn around from the past few days! He wanted to be outside a lot and was lying in the grass and on the deck and enjoying the sunshine. He is eating burger and rice and was awake with no naps from 6am- 4pm! This is so good! Could this be the sign we were asking God for!?!?! His legs are still swollen but the fluid in his tummy has gone down by half! He is peeing all the time and pooping straight water, so we think this is the fluid leaving his body. We will take it!

He is eating well and even flew off the bed when he smelled me making his burger for dinner. He even stomped his feet to beg us for our lunch! Max was much better today and in good spirits, was active, walked around a lot, and was a complete turn around from the past 5 days.

We head to MSU tomorrow to speak with his doctors but at this point, by Sunday night, we are pretty sure Max has a few more days ahead of him. We are taking this turn as a sign from God that it is just not his time quite yet.

We are going to have a blood panel ran and protein test done to see how everything looks and talk about his cancer, stopping chemotherapy and Max's over all care and prognosis.

xoxoxo,
Brenda

xoxoxo,
Brenda