Time Passes

I know that it has been quite some time since I posted. There is so much I don't know how to say! We are trudging along and keeping busy. Our Parish started Theater Group and we volunteered our barn for practices. ALL SUMMER LONG! Wonder Knitter played the part of Sabina ( Maid Marian's Handmaid) in Robyn Hood, that play they put on. I was really proud of the group...a bunch of amateurs learning a Shakespearean type language and all of the little things that have to be done to put on a play.

We raised more chickens this summer, about 10 new layers and 20 meat chickens, which we butchered a month ago.

We went camping for a few days with friends up near Duluth, MN... at Gooseberry Falls. It was lovely!

We had a family vacation at Wisconsin Dells, it was nice to get away, but we missed having our Boy with us...my heart aches every day, I tie it into Our Lady's suffering at the foot of the cross.

 Nothing is quite as bright as it once was, without Lego Boy to be a part of it. He would be turning 11 on Sunday, October 9th. I teared up, yesterday, at Shopko...spying some little gifts that I know he would have enjoyed. Do you know, I find myself  often grieving the MOST while shopping??? I never would have guessed that...

Lego Boy...Forever in our Hearts

I am not sure when I will feel up to posting again. Our hearts are all grieving the loss of our Lego Boy. I am sharing a poem from Sanjay's Memorial card that described our feelings exactly those hours before he passed away from this life.

               Letting Go
The angels gathering near your bed,
so very close to you
For they knew all of the things
that you were going through,
I thought about so many things,
I tightly held your hand,
how I wished that you were strong
And healthy once again;

But your eyes were looking homeward
to a place beyond the sky,
Where God will hold you always,
it was time to say goodbye;
I struggled with my selfish thoughts-
for I wanted you to stay
so we could walk and talk again
like we did-just yesterday;

But God still knows what's best
and I know He loved you so
So I gave to you life's greatest gift:
The gift of letting go.



We love you, Lego Boy...and we miss you very much...

God's Mercy and Grace...in my Husband's Words

Sunday, February 13, 2011 11:00 PM, CST

As you all know, Sanjay, my youngest is going through a bone marrow transplant at the U of M Childrens hospital. I drove out Friday the 11th after work to spend the weekend with him and give Karla a break as she spends all week with him(a parent is required to be with him at all times). He had been sick from the chemo with typical reactions, nothing out of the ordinary for a BMT patient. He was miserable most of the week and had started nose bleeds Thursday and Friday. I was up with him all night Fri/Sat with nose bleeds and diarhea, then Saturday took an unexpected turn.During his morning weigh-in he became dizzy,not uncommon. The nurse and I sat him in his bed and he started complaining about a headache, then he soiled himself without even knowing it. I cleaned him off in the shower and by now,which was only a matter of minutes, he became too weak to stand. I laid him on his bed and he started having seizures the doctor was there within a minute and ordered a CAT scan. We took him down immediately, they scanned him and before they could even unstrap him the doc came out of the booth and told me "no beating around the bush, this is serious, Sanjay has a amssive bleed in his brain". You can just imagine my reaction. It was happening all too fast.They rushed him up to ICU andthe neurosurgeons were already there. They confirmed the bleed and then hit me with the news that there was nothing they could do because his platelets were too low. He was at about 1,000 and if they tried anything he would die  because his blood would not be able to clot. They immediately started searching all the blood banks for the platelets he needed which would not be easy because he needed AB neg which is very rare. Meantime they were throwing in any platelets they could find because they needed his level to rise to 75,000 before they could attempt anything. It was a race to raise the level because his brain was still bleeding. The proverbial "rock and a hard place". They told us he probably wouldn't make it through the afternoon. They had no idea what damage had already been done and told us another scan wouldn't even be necessary unless his platelets rose high enough. They didn't give up and continued to shove in platelets as soon as they could find them. The platelets started to rise slowly, about 5,000/hr. The neurosurgeon did some checks around 1:00pm and Sanjay was totally unresponsive. They knew we were Catholic and suggested this was the time to call a priest. We were totally devastated by this point but you know what, he was still alive too. The priest came, confirmed with the doc that Sanjays time was very short. Sanjay got his Confirmation and last rites, we were preparing for the worst, this was around 2:00 pm. We had sent for our kids by this point and we were all saying our last goodbyes but yet he was still alive and his platelets were still rising. We were just waiting. Around 7:00 pm the doc came to us and said Sanjays platelets had reached 60,000 and they wanted to do another scan. About 1/2 hr later they came back with the results and said his bleed had worsened and that his brain stem appeared to be severely damaged. They wanted to know what we wanted to do. Risk putting in a tube to relieve the pressure while the procedure would probably kill him, or they could just make him comfortable until he passes. They told us even if he survives, with his brain stem damaged, he would probably not be able to anything on his own for the rest of his life. I pray none of you reading this ever has to make the kind of decision Karla and I had to make. We decided to take the shot, we just had to. We know that Sanjay would like to take the shot. We signed the paperwork we had to sign and by the time he was prepped and all the specialists showed up his platelets had risen to about 80,000. They put in the tube and it failed. They told us that repositioning the tube was very risky and would probably kill him. They repositioned and it took and he started to drain. A lot of blood came out, about 1-1/2 cups. Now all they could do was wait. They didn't believe he would make it through the night. By this time Karla and I were mentally and physically exhausted. We decided to try and get a little sleep and just wait for the call. The call came in at 7:00 am. Sanjay made it through the night and actually had a couple of positive neurological exams. But after repositioning the tube several times throughout the night the tube finally clogged for good. His platelets were at  about 129,000 at this point and they wanted permission to do another scan followed immediately by a craneotomy. They wanted to remove about a hand size square piece if skull to relieve the pressure.  They told us that this was another "last shot" and that it was highly unlikely he would not make it through the surgery.We gave them permission. After surgery, the neurosurgeon told us that they successfully removed his skull, relieved the pressure, remove a lot of clotted blood and saw that there appeared to be no more bleeding! They showed us the "before and after" scans and showed us that the brain stem appeared to be relieved of the extreme pressure it was under. They told us not to get our hopes however we believe we saw him almost smile. During the day they shifted the tube and while the neurologist was performing an exam Sanjay actually tried to push her hand away and reach for the tube down his throat after she made him cough. It really surprised
everybody in the room. All 4 limbs responded with very minor movements but movement nonetheless. Absolutely incredible as they were preparing us for Sanjay in a vegetative state. So we just watched and waited. Sunday evening Karla was with Sanjay and the nurse had to shift him to prevent bedsores and afterward he became really agitated. He tried to use both hands to reach for the tubes, his head or something. Karla held his hand and said "Sanjay, are you in pain? if you are, squeeze my hand" He immediately stopped what  he was doing and squeezed her hand! The nurse was absolutely thrilled and said that she had to tell the doctor ASAP. Since then Sanjay has responded several times by moving fingers and squeezing slightly. Sanjay is by no means out of the woods yet, he shouldn't be alive right now let alone moving and responding.But we can't help but feel we are witnessing an awesome miracle in progress.It's was around 11:00pm and Karla and I are comfortable enough to go get some sleep.
We'll keep you all informed. Keep up the prayers please.
Ted

BMT Update

Hello there again!
I am posting from the hospital computer just down the hallway from Lego Boy's room, so no pictures to post. But I thought my faithful blog-readers ( all 2 of them , haha) would appreciate an update even without pix, so here goes!

So far  Lego boy is feeling fine, we are on day 4 of Chemo ( Fludarabine) and he will have 2 days of a different type of Chemo over the weekend. Hubby and the kiddos are coming to visit for the weekend to see Lego Boy and celebrate my birthday on Sunday...can hardly believe the big 4-0 is here!!!

I have been doing a lot of reading and praying, and Lego boy has been busy with schoolwork and Wii! ( They have either Wii or Play stations in the patients rooms) He will be getting speech therapy for his articulation difficulties while he is here and captive, MuaHaHaHa! He really has been an easy patient so far and ALL of the nurses rave over him being so easy and polite. My mama's heart likes to hear that...and I try to KEEP him polite and humble!

I just heard today that my mom ( who  moved in with us this fall) is having some painful and severe problems with her eyes ( especially the left one) due to her diabetes, and her eyesight is extremely threatened. Could you please pray for her when you are able? One of her only consolations is reading, and if she goes blind it will be a very heavy cross. I wish I could be 2 places at once...

Pax Christi!

Lego Boy... and the BMT Begins!

Well hello there folks! As anticipated, the blog-world is still somewhat of a mystery to me. But, hey, I learned how to insert a picture! This is a picture of my somewhat kooky family at my sisters house. We had a marvelous day with the extended family before Lego Boy and I had to head to the Ronald MacDonald House to start his chemo the next day.

The first round went pretty well, but he did have a few bad reactions, the first day being the worst! On top of that I ended up getting a stomach virus and had to leave him in the hospital under the care of the nurses and volunteers until I recovered . It took 2 days, and everyone back at home, except Drama Queen, got it too! Lego Boy did great , though, and the nurses told me they should have taken him around to give other patients lessons in how to behave at the hospital...always good for a mama to hear!

We get to be home for a week before the more intense Chemo and the actual BMT is scheduled on February 1st...praying for a complete cure from his Thalassemia Major. May God bless you!