Thursday & Friday

I'm sorry I didn't get the blog updated yesterday.  It was a very busy day.  Little Buddy often has an almost constant stream of nurses, doctors, therapists, social workers, etc, in and out of his room. Silly me, I thought I would get bored being in a hospital room all day!

Little Buddy continues to improve a little bit each day.  The improvements at this point are true baby steps.  A smile here, a finger movement there.  He still loves music therapy and is even starting to "sing" by making little noises.  He wants so badly to talk!  We can see his tongue moving and his brain trying so hard to remember how to get the words to come out.  One thing he does remember how to do is laugh, and everyone works very hard to get him to do it!

Little Buddy is going into surgery today to have a more permanent IV (PICC line) put in for his chemotherapy.  It is a fairly easy and routine procedure, so we don't anticipate any problems.  He will also have a spinal tap at the same time to see if there are any cancer cells in his spinal fluid, so they know how agressively to treat him.  Then he will probably start his radiation therapy with the Huntsman Cancer Institute in a week and a half or so.  The side effects, both short and long term, aren't much fun, but we are grateful that the therapy is there because his chances of survival without it aren't very high.  So, given the alternative, it's a very easy decision to make.  We hope that better and more effective cures for cancer are developed soon, so that other children won't have to go through what the kids now have to.  But again, we are very grateful that the cures are there, and with both raditation and chemotherapy, Little Buddy has very good chances for a long and happy life.

Wednesday Morning

This morning there are smiles all around!  Little Buddy was added to the music therapy schedule today and he LOVED it!!!  They came and did some sensory integration therapy with different musical instruments.  They sang songs, had him track the sounds with bells (meaning they would shake some bells by his ear until he turned his head in the direction of the bells) , helped him shake some maracas, and ran another instument up and down his left arm teach his brain where his arm was and to try to get him to start using it again.  Little Buddy smiled several times during the music session.  That was wonderful to see!  As the music therapist was leaving she told Little Buddy, "I can see that you are going to become one of my favorite patients!"  He has really won over a lot of hearts around here already.  But is that really any surprise? :)

Sweet Boy!

Me, my tubes, and Bear

First time on Mommy's lap :)

A visit from the cousins

Out of the ICU

Lots of tubes and monitors in the ICU

In the ICU

Tuesday Afternoon

Today has been a day of ups and downs.  Little Buddy had a very good therapy session, as I'm sure you read.  He is starting to be able to let his emotions out a bit more.  With a little giggle earlier, and now with some tears that are squeezing out of his eyes.  It must be so hard to be away from home and stuck in a hospital, with a body that isn't doing what you know it is supposed to, when you are only three years old.  With every tear that slips out I feel like shedding ten more.  It is so hard to see your little one suffering and sad, but we know that the Lord is watching out for his physical conditions, so we are confident that he is watching over him emotionally as well.  Please continue to keep him your prayers.  Love, Jana

Tuesday Morning

Little Buddy is doing well today!  His eyes are almost all the way open, though he is still a little cross eyed and can't really focus on anything.  But we still see the "real" boy in his eyes and know he is in there.

He is also moving his right arm more and more.  He doesn't really move his left arm much, but we are hopeful that will return as well.  Physical and Occupational Therapy have been already been in working with him, so they aren't loosing any time.  Little Buddy loved his therapy session this morning.  He got to play with a ball (with help, of course), and he had lots of smiles in his eyes.  He is basically having to learn how to do everything all over again.  He can't hold his head up, hold the ball by himself, etc.  It's just like a little baby having to learn how his body works.  But we really feel like he will make progress and do better all the time. 

The highlight of the morning came during Little Buddy's therapy session.  Like most little boys, he thinks that bodily functions are just hilarious.  His therapist was holding him when he passed some gas, and she was teasing him about it, and he let out a little laugh!  Then I saw that he had drooled on his bed when they had him on his stomach, so I teased him about that, and he laughed again!  We felt like throwing a party we were so excited! :)

Also, the shunt in Little Buddy's head is draining a lot more clear this morning than it was just last night.  That means that a lot of the blood has drained out, and we are getting closer to having the shunt removed.

So, this has really been a morning of progress, and we are very excited!

Monday

Little Buddy is still stable and seems to be waking up more and more.  Today he had his eyes about 2/3 open, which is more than they have been open the whole time.  He also has started to move his right arm enough that they put a very loose restraint on him to keep him from pulling out his shunt.

As the doctors have been in to evaluate him, they have been very happy with his progress.  He has come such a long way in the past week.  I know that I say this every day, but we are so grateful for how much we have been blessed, and we know that it is in answer to the many prayers that have been said in his behalf.

We are also very grateful for all of the support that we have received.  We are truly blessed to have such wonderful friends and family.  Thank you all so much!

Sunday Morning/Afternoon

Things with Little Buddy have been very encouraging this morning. We brought his bear from home, and I came in and told him that Bear was here to be with him. His eyes got very bright and happy, and he turned his head and "hugged" Bear with his head. Few things can make Little Buddy happy like Bear.

He also has been moving his right arm quite a bit. He has been checking out his PICC (IV) line by bringing his arm up to his eyes (at least 10 times), and he kept trying to rub his eyes and his forehead. He wasn't really able to do it very well, but I could tell that he was trying. We think he has a very painful headache today, as I'm sure you can imagine, so we are trying to keep his pain medications up.

The doctor came in and did some pain response tests on him to see how he responds to painful stimuli. He still doesn't pull his hands away, but he tenses his legs now and you can tell he feels uncomfortable, which is progress because before you couldn't even tell he felt anything at all.

So, in all, it has been an encouraging day, and we are happy with how things are progressing and the many, many ways that the Lord is blessing us! We know none of this would be possible without Him. We are grateful for your continued prayers, and His constant awareness of our little buddy and how much we have been blessed this last week!

Saturday

So, I'm sure there are quite a few of you who are wondering why we didn't update the blog yesterday.  That's because Little Buddy's aunt who has been keeping the blog ended up in the ER with a rupured appendix.  She is in a lot of pain and will be in the hospital for a few days on an intravense anitbiotic, but other than that she is okay.  When it rains, it pours.

As for Little Buddy, he is doing better all the time.  He lost three more tubes yesterday: both of his remaining chest tubes and his tube that was emptying out his stomach acids, etc.  Very good news!  He is mostly unresponsive, but we can tell by his eyes that he knows we are there and that he is listening to what we say.  He got a visit from his cousins last night and he loved every minute of it!  He is also starting to move his arms and head a little bit this morning.  Very encouraging signs!  So, things are still headed in the right direction, and we are optomistic about how everything is going.

Friday Night

We got the final report from the Oncologist. Little Buddies tumor is a grade 4 medullablastoma, it is a very fast growing and highly aggressive cancer. We will need to repeat the MRI to ensure that indeed all the tumor was taken out in surgery and that the surrounding tissues do not have any sign of cancer growth either. If they got all the tumor and there is no evidence of cancer in the surrounding tissues then he has a 75% cure rate. He definantly will need radiation and chemo treatments. The oncologist will map out a shedule for when Little Buddy will come to the hospital to get his treatments. Normally they like to wait until the patient is more alert before starting treatment. But because the tumor is a grade 4 they will probably start treatment as soon as his brain shunt comes out which may be next week sometime. Little Buddy is still quite unresponsive but we know that he can hear us because occasionally he will open his eyes and look around when someone is talking to him. The surgeon believes that his body is diverting all it energery to healing the brain right now and that is why he is so unresponsive. He is still watched very closely by the nursing staff in NTU and we are still praying for him.

Fasting

Our family is fasting for Little Buddy tonight and into tomorrow. He is being watched very carefully by the nursing staff and doctors but we are all worried about him and feel he is at a cross-road right now. If anyone would like to join in the fast they are welcome, don't feel obligated but we know Little Buddy can use all the help he can get right now. Thanks everyone.

Moroni 7: 27-30

27 Wherefore, my beloved brethren, have miracles ceased because Christ hath ascended into heaven, and hath sat down on the right hand of God, to claim of the Father his rights of mercy which he hath upon the children of men?

28 For he hath answered the ends of the law, and he claimeth all those who have faith in him; and they who have faith in him will cleave unto every good thing; wherefore he advocateth the cause of the children of men; and he dwelleth eternally in the heavens.

29 And because he hath done this, my beloved brethren, have miracles ceased? Behold I say unto you, Nay; neither have angels ceased to minister unto the children of men.

30 For behold, they are subject unto him, to minister according to the word of his command, showing themselves unto them of strong faith and a firm mind in every form of godliness.

Friday

The last day we've had some good steps forward, and a step or two back. That's to be expected, I'm sure. The steps forward are that Little Buddy is out of the ICU and has been moved to the Neuroscience Trauma Unit (NTU). He is completely off of oxygen and is doing all breathing on his own, with good saturation levels. His blood pressure remains constant without any medications. We have the official word on his MRI, and it has been confirmed that they got all of the tumor in surgery and that none of it spread down his spine. All very wonderful things! We are still waiting to hear from Oncology about where we go from here, but he still has a lot of recovering to do before we can even think about Chemotherapy. The steps back are that Little Buddy is running an almost constant temperature, and that he is also less responsive than he was. He has very minimal movements, purposeful or otherwise, and isn't responding to commands. This is worrisome because the longer he goes without showing signs of responsiveness the more the likely it is that he perhaps never will. But our Little Buddy has already beaten every odd, so we are very hopeful that he will do it this time, too. He is much better than he was, but he is still a very sick little boy and has a long, long way to go. Please continue to keep him in your prayers!

New News From Mom

We have even more great news this morning. Little Buddy had his MRI last night, and we are still waiting for the Neuro-radiologist to give the final word, but the preliminary results show that they probably got all of the tumor and that the cancer didn't spread down his spine. They also said that there didn't appear to be any major damage to his brain or stem from either the tumor or the swelling. We will find out for sure if that is true later today. But it looks really good at this point.They took Little Buddy's breathing tube out this morning, and he is doing great breathing on his own. He is also off of the Epinephrine completely and his heart is doing a great job keeping his pressure up, and his heart rate is excellent. He will probably be loosing one more chest tube today, and that will leave only one tube remaining. He will have another EKG and Echocariogram today to make sure his heart is recovering well from all of the strain that has been placed on it.

Little Buddy is doing so well that he may be able to leave the ICU in the next or two. A miracle to be sure! The doctors and nurses are absolutely amazed at how well he is doing and how quickly he is recovering. In the words of one of the residents I was talking to this morning, "He has really impressed a lot of people around here." In fact, she stopped in to see him before going home so that she could leave on a happy note. Littel Buddy is truly a source of inspiration to many.We should be talking to Oncology in the next day or two, and they will give us a road map for Little Buddy's chemotherapy treatments. It will tell us which medications he will be receiving, when, and what side effects to expect. That will give us a better picture of what is ahead of us this coming year.We are SO GRATEFUL to all of you for your faith, prayers, love, and support. We can literally feel the faith and prayers that are being exercised in our behalf. We are overwhelmed and so grateful for all of the love and support that we have received. We can't thank you all enough, but please know that you have our deepest and most heart felt gratitude.

Love to you all, Jana

Wedensday/Thursday

We got the report from the MRI back and it looks as if the surgeons got all of the tumor and the cancer did not spread down into the spine. It also appears that there is no serious damage done to the brain stem. We still need him to wake up more for us to see if there is any balance, speech, motor skills, swallowing, and other problems that would need therapy but would most likely return over time. He is completely off his epinephrine which is the drug that was maintaining his blood pressure. And he is pretty much breathing on his own at this point. They are keeping him intubated just to ensure that his brain is getting enough oxygen. We still have a long road ahead of us but Little Buddy has made incredible strides these last 36 hours and we are all much more hopeful that he will pull through. Thank You everyone for your prayers we know it has helped.

Tuesday Evening

Do you want the good news or the bad news first? How about the bad ... We got the pathology report back today and Little Buddy indeed has cancer. Meduloblastoma, a very big word. He will need chemotherapy and radiation. We don't know yet if the cancer spread to his spinal cord or if they were able to get all of the tumor out, they need an MRI to see that and he is still just too unstable to be moved out of his room. One good thing is that the doctor said 75% of kids who get this kind of cancer do well and if they stay cancer free for 5 years they usually will have a long and healthy life. He did get a CT done today which showed a good amount of swelling has gone down in the brain.

Now the good news ... at 6:00pm Little Buddy opened his eyes and started making purposeful movements. He is squeezing our hands on verbal command now and responding to irritations, such as his tubes, he keeps trying to pull out his NG tube. They also have been able to pull out 1 Of 4 chest tubes and he is at 35% oxygen. He still needs the epinephrine to maintain his blood pressure and they had to give him some more clotting factors today but all in all he has made a huge step toward healing. And we are happy that he is being a little fighter.

A Note From Mom -- Tuesday afternoon

An update. Little Buddy was doing well this morning until about half and hour ago when he had an abnormal heart rhythm. They were very worried about it (even brought in a crash cart), but they gave him some meds and have stabilized his heart rhythm. They took an ekg and are going to do some tests to try to discover what caused the abnormal rhythm. He is now stable again, on only 35% oxygen, and his heart rate and pressures look good.We spoke to the doctor a few minutes ago. He said that Little Buddy is looking better today. He said that he now feels that Little Buddy has a good chance of making it through this, whereas yesterday he wasn't very optimistic. So that was good news to hear the doctor give a more positive report (especially considering what had just had just happened with his heart.

A Note From Dad -- Tuesday afternoon

(Castellano abajo -- Spanish below) Pathology (the guys who are analyzing the tumor) told our nurse it could take until Thursday to report on the tumor.The most immediate hurdle is his lungs/heart/blood pressure problems. Once he's stable, and when (if) he wakes up, we'll be able to start evaluating his neurological damage. The treatment for cancer (if that's what this was) will come after that. Thank you for your prayers and love. Gerardo (Jerry).------------------------------------------------Patologia (donde analizan los tumores para ver si son cancer o que) informo a nuestra enfermera que el analisis del tumor puede extendersehasta el jueves. Los problemas mas importantes por ahora estan relacionados con los pulmones, el corazon y la presion arterial. Una vez que estos problemas se estabilizen, y si se despierta (cuandose despierte!) el proceso de evaluar el posible da\o neurologicoempieza. El tratamiento del cancer (si es cancer) viene despues de todo esto. Gracias por el apoyo y las oraciones.Gerardo.

Monday Night

Little buddy started having a hard time breathing again and his right lung started fill up with fluid. They have put in another chest tube on the right side so now he has one in each lung. They had to increase his oxygen to 100% again but by early morning he was below 50% again. He is still on the epinephrine and it has been difficult to take him off. He is stable right now and we are hoping he will have a better day today. We are expecting to get the reports of the tumor today.

It happened so quickly

I am making this blog so that everyone can stay apprised on little buddy's condition. I will not be using his name since this is an open blog. I will try to keep this as updated as possible so that those of you who want to know how he is doing will be informed.

Sunday afternoon: Little buddy and his family came home from church and he was complaining of his "body feeling icky". He laid down on the couch and became very lethargic. His eyes began to roll back and he was not responding to vocal commands. Afraid that he was having a seizure his parents took him to the ER. He stopped breathing within minutes of arriving and the doctors intubated him. The did several tests and discovered a tennis ball size tumor at the base of his brain very close to the brain stem. It was actively bleeding and creating a lot of pressure in his brain so they life flighted him to Primary Children's Hospital where he under went emergency surgery.

Sunday night: He was very unstable throughout the surgery so the surgeons had to move quickly. They placed a shunt in his brain to drain out excess fluid and left part of the skull off so the brain could swell without being compressed. The doctors said it was too early to tell what kind of damage may have been done to the brain. Because the brain is still swelling we have to wait at least 72 hours to see how he will respond and if he will wake from his coma. We will not know if the tumor is cancerous until Tuesday.

Monday morning: Little buddy was very unstable throughout the night and into the morning. He was having a hard time maintaining his blood pressure. They had to put him on a paralytic drug to paralyze his diaphragm so that the breathing machine could breath for him. When he tries to breath on his own he can not fill his lungs with enough air. They have put 2 chest tubes in to try and equalize the pressures of his lungs.

Monday afternoon: His vital signs are doing better but now he is unable to keep his clotting factors in his blood from going crazy. Basically his blood is thinning out. That is dangerous because it could potentially cause more bleeding in the brain. They have given him plasma and clotting agents to try and reverse or stop the process. He is still in a very critical condition at this point and there is always someone there with him.