Hospital visit, new plan, cherish them

Max is being released from the hospital this afternoon after a semi-emergency check-in last night due to the blood and clots in his urine.

Yesterday at school the clots escalated to unimaginable size - small earthworm size. Apparently he passed three of them at school throughout the day, which he told us about after passing one at home that Andy had to help him with. There were tears and cries. It was simply awful and I don't know how he got through it at school. Earlier in the day school had called me and his teacher emailed that he had a lot of blood in his urine, but they missed the clots and Max failed to mention them until bedtime. (BTW - his urine looks like a blood donation - there's no urine.)

At 7:30pm Max and I were packing for an overnighter. We checked in around 8:30 - one hour past his bedtime already (he had fallen asleep during the car ride to the hospital) and he somehow stayed awake until 10:45. During this time he had all his vitals checked, port accessed, gave a urine (blood) sample, etc. He finally gave in and fell asleep. 30 minutes later we had to wake him up to insert a urine catheter to help pass the clots through his urethra. Not a walk in the park for a little kid nor his mother who needed to hold his hands and block his view.

His CBCs were low on HGB (8.1) and PLT (35) and he received a transfusion for each overnight while he slept.

During the night we found that the stupid catheter was not doing its job AT ALL. The clots wouldn't go through it and instead passed alongside it causing way more pain than he had without it. I had them give Max morphine after he went through that a second time and it was good thing. While waiting for the nurses to get it through the doctor's head that I insisted they removed the damn thing he had a third clot push passed - the morphine barely helped. There was blood all over the bathroom, towels, blankets - I left it all there to get the point through a little faster. I told them that I would not go through that again if it were me and I am not letting anyone make my child go through it again either. And, no, you can't take this one out and replace it with a larger one. It was removed.

At 9:15am this morning Max went into the OR for a cytoscopy. The urologist told us that he saw no visible evidence of cancer lesions, however, the blood that was flushed out was sent to pathology along with some small tissue samples of the bladder wall. He said the bladder looked consistent with what he would see in someone who has damage caused by something like chemo (cyclophosphamide). There is no medicine to help Max heal from this - only time will do the job. We will continue to see blood is urine until such a day comes when he is healed.

In the meantime, we are seriously concerned about his blood counts dropping after being off the oral low-dose topo for nine days. It is possible that the topo is still having effects on his marrow.

On Monday Max will start the new chemo treatment plan and he will also be set-up to receive more radiation. We are very frightened that his counts will bottom out and treatment will have to stop. This is where I don't know what to write. The cancer is spread thin in various places throughout his body. We don't know how quickly it is growing. We don't know if this treatment plan is going to work. We don't know if Max's marrow can keep up with the toxicity.

I look off to the left of my computer (Andy's old one) and see the paper weight that Lisa Sturt gave to us for Christmas: never, never, never give up. I will not. I have hope. I have strength that sometimes fails me. And I'm scared. Tears have come often today. I've asked myself repeatedly, "is this the beginning of the end?" I suppose everyday is...

Cherish your children even more than you do already. They are a gift from God for you to love and care for. They are magical, imaginative and beautiful in everything they do. Close your eyes and see it in everything they do, good and bad.


Anonymous said...

Oh, my poor Max! I feel terrible. What a 24 hours (and 3 years) you all have had. I'm so sorry you all have to go through this. I'm proud of you, Melissa, standing up to the nurses and doctors to get the morphine in and the catheter out. You are right...each minute, each hour, and each day is precious no matter your circumstances. I am praying that with each minute Max will only improve, and that God will work a miracle. Not giving in or giving up my prayers and a belief that Max can be CURED...xolisa

Anonymous said...

NEVER NEVER NVER GIVE UP!! We are all behind you, and Max! There IS a Miracle for him....
Hugs...Debbie W.

Anonymous said...

What a long sad day and night for you. Don't give up! There is hope and where there is hope there is life. Our prayer chains are working over time praying for healing for our little Max. My heart aches for you and Andy having to go through these uncertain times. It's so unfair that Max has to go through all this pain. I pray for strength for all of you. God is there and he is listening.
I love you... Nana

Anonymous said...

i've been reading about max for a long time now and found myself thinking of him today, remembering your video post from a few days ago, of max singing ring of fire. i absolutely LOVE his voice and his smile when he realizes you are taping him. he seems incomparably sweet. wow, you are going through hell right now. i am so sorry. no child should have to experience this, but you seem like a mother who won't take crap from anyone. i have to believe that your toughness helps max. please know that there are many, many people who are thinking of max and your family. we are sending you strength.
toby pannone's mom

Anonymous said...

My heart breaks for you. May God meet Max in his pain, his desire for healing..his heart. "Never, never, never give up"...hold onto God, you are covered in prayer without ceasing.

My kids are singing Ring of Fire with him...

Hugs...Debbie L.

San Diego Mom said...

What a day. You must be exhausted. DO, DO take cake of yourself too, ok? Mo mother should go through what you had to. I just want to hug Max right now so bad. But I will wait until next time I see him when I am not drenched in tears. No sad faces in front of him.

Anonymous said...

So sorry it was a "sucks more" day. Please know that there are so many people who take inspiration through your journey. We think of you and your family when we are in our cars at the drop off line, standing at the back of the school at pick up time, in our bedrooms during quiet time, at the computer when getting updates and mostly when we look at our children.
We are all holding on, white knuckled tight, with hope for MAX!

Randee said...

I cannot imagine how difficult it must be to watch your child in pain. Thank you for hanging tough for Max and advocating for him. I know in my heart of hearts God is in this with you, watching over you and loving you. Remember miracles and each day is a new beginning. Hope is everything--Never, Never, Never Give Up!!
Love and Prayers, Randee

Anonymous said...

Dear max and family I am so sorry about the hospital visit. You are always in my thoughts. Max I will see you at school next week, can't wait to catch up on star wars. Love Julie Paris
p.s. My son loves star wars too. He found some new figures in Fresno we are on our way to yosemite.

Anonymous said...

Max is in our prayers. I just can't help but cry with you and the family. I don't know what I would do... just pray. I've put him on the prayer chain at church and at work. You're such a strong mom and Max is the strongest little boy!!!
Erin (De Jong) Baker and family

Anonymous said...

I cannot find the right words to express how very sorry I am for what Max is going thru..I am so proud of you Melissa that you stood your ground for Max..BRAVO!! It is such a heart breaker to know what is happening to Max and even more of a heartbreaker for you as parents. I will not give up hope that there is a miracle for Max..and will continue to pray for his complete recovery. Sending huge hugs to Max..xo Linny

Anonymous said...

Hi Melis-
Im so sorry for Max to have to go through that- and for you too. What a tough little guy. Its so inspiring when you think about how ravaging the chemo is, the drive and will is just awe-inspiring. I know you guys are parents who are not going to leave any stone unturned. Max is so lucky to have two smart, strong, loving parents in his corner every second of every hour of every day. Thinking of you-
Carrie Palmer

Anonymous said...

I feel sick to my stomach about the latest developments...keeping your family in my prayers....may you be carried through this awful time...and may a miracle occur.

Anonymous said...

Hey Mikulak Family,

Thinking of you all every day. Max is a superstar as are you and Andy, Melis.


Vickie said...

Keep swinging for the fences!


Anonymous said...

Good morning Miss,
Our hearts are breaking for you and your family.
But.....we are still praying for a miracle. And not giving up hope for Max! Praying for God's will to be done, not mine. Our God is an amazing God. Trust in Him. ok?
Just can't imagine your fears and your pain. We are holding you and Andy up in prayer as much as little Max.
Hoping today is a better day than yesterday.
All our love and hugs,
Sue and Tim :)

Anonymous said...

I have been thinking of you guys today as you started the treatment plan. Hoping and praying for high counts and a good response to treatment.

Randee said...

My thoughts exactly as I check in tonight. We are praying for you through out the day.

Love you, Randee

Anonymous said...

I know my words can't heal pain or create miracles... but you and your family are such an inspiration. Through all your hardships, you remind us all that everyday things are just that... everyday things. Children are our hearts, our loves, and are the most amazing and wonderful creatures.

My heart goes out to Max, the bravest boy I know.

Lisa F.

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