Archive for April, 2007

D-0……”TRANSPLNT DAY”

Monday, April 30th, 2007

D-0 (30-Apr-07), Today is the MOST important day in our life. We started our day with prayers. Since morning we started getting lot of good wishes from people through phone calls and messages. Mornng CBC was done and as expected, counts were pretty low. (WBC-20 and Platelets-29,000). By 11:30am (Singapore time) Cord Blood Unit reached our room. Very small bag containing only 25 ml. It appeared like “Sanjeevini“. At 11:42am, Cord blood transplantation procedure started and got over by 11:54am! Procedure is just like blood transfusion in IV through Hickman line. No surgery or physical cuts are involved. During the transplant time, his BP was monitored and oxygen mask was put in case of resperatory problems during the transplant. Piyush was calm and composed and watching everything carefully. By 12:15pm, everything was back to normal. Sometime of the day he complained about mild stomach ache but brought under control subsequently. This is due to earlier chemo and radiation.

Entire day Doctors kept on visiting to monitor his progress. Evening after few test like kidney, blood etc, Doctor confirmed that Flow of the Cord Blood inside the body is good. What a relief this was! Another major milestone crossed. Finally transplant procedure is over.  But we are still in the middle of the journey. The next challenges ahead are, growth of stem cells and Graft Vrs Host (GVH) related diseases. Normally stem cells starts growing from the 4th day of transplant and it takes 17 to 23 days to grow completely. And  the GVH related challenges later.

We offer our sincere gratitude to GOD for everything happening here. He is really holding our hands and guiding us through in each and every moment. Also once again our heartfelt thanks to all of you for your kind help and great support, because of which we could achieve this milestone. Thanks for giving Piyush a new life. Please continue praying for him.

Afternoon, Piyush’s favorite Neela Aunty brought him tasty cake which is prepared with lots of love as this is really his re birth day. Also she brought b’day gifts. Piyush is delighted! That has kept him active and happy whole day.

Updates from Singapore

Sunday, April 29th, 2007

D-1 (29-04-07) Today is rest day. Only Thymoglobulin drug was given. Initially Piyush was thinking that rest day means no medicines, no IV and he can go out and play. But whole day his IV was on for hydration and he had to remain either on bed or sofa. Evening he jokingly said….”Papa, I thought rest day was meant for me. But actually rest day is for sisters”. As expected, today his counts are bit low. WBC are 700 and Platelets are 70000. May go down further by tomorrow.

When Doc mentioned that tomorrow is re-birth for Piyush, he was so excited! He is very much happy because he can celebrate his B’day twice a year and can get b’day gifts twice a year! His definition of ransplant is, inducing super power in to his body, to become Kriish! He has kept his spirit high. He is quite active and cheerful.

Everything is set for “D-Day”. Transplant is scheduled tomorrow at 11:30am Singapore time, (Indian time 9:00am). We are counting every minute. GOD is really great, so far everything is moving on the right direction. This is MAINLY because of your prayers. Please continue praying for him.

Chess, my favorite game!

Saturday, April 28th, 2007

picture-015.jpgpicture-032.jpgpicture-025.jpgpicture-020.jpg

D-5….D-4….D-3… Updates from Singapore…

Saturday, April 28th, 2007

D-5, (26-Apr-07).. As of now, Total Body Irradiation is completed. So far Piyush has undergone 6 rounds of radio therapy (10 minutes each time). He has taken it well. He is been active, cheerful and playing around. Doc is quite satisfied with his response. After completion of last round of therapy, Piyush, on his own, met all the staff in radiology and thanked them. We were surprised to see that! In last three days he used to fight with them or deliberately trouble them during the set-up time with some or other reasons.

D-4 (27-Apr-07)…  From now, intensified chemo has been started. Along with the chemo, two other drugs are also being given in D-4 and D-3. Name of the chemo drug is Cyclosperin. This cyclosperin is given for clearing off his entire marrows in order to make room for the new stem cells. Other two drugs are Mesna and Thymoglobulin. Mesna is basically detoxifying agent. It reduces the harmful effects of certain metabolites of radiao therapy and chemo therapy. It is also used to prevent bleeding in the bladder during the chemo period. Thymoglobulin is an immunosuppressant. It is used to reduce the body’s natural immunity in patient who is undergoing any transplants. When a patient receives transplant, the body’s white cells (host) will try to get rid of (Reject) the new incomers (guest).  So this drug works by preventing the white blood cells from doing this. It is GVH. (Graft Versus Host). Evening Piyush is shifted to positive pressure room in anticipation of lower counts due to effect of chemo and other drugs.

D-3 (28-Apr-07)  Today also the same drugs have been continued. But counts are better than the anticipated one. His WBC counts are 1400 and Platelets are 104,000. He is quite active. After long gap, today he played chess with computer. He could manage to win 4 times! and draw 1 game. I just captured the pic when he was fully engrossed in playing chess. Today is the last chemo and Mesna. Thymoglobulin will be continued for one more day. So tomorrow would be vertually rest day.

D-7 and D-6, Updates from Singapore

Wednesday, April 25th, 2007

From Tuesday (24-Apr-07) onward the countdown has started. Here in hospital, they do reverse counting like D-7, D-6, D-5…………and D-0. (D-0 is transplant day)

D-7, (24-Apr-07) at 8:45am, first sitting of Total Body Radio therapy started. Acutal dose given was for 10 minutes. But initial setting took almost 1Hr. We had doubt whether Piyush would be able to sit alone inside the radiation room or not. If not, then option would be to put him under sedation. But he just agreed to sit alone. While he was inside, he found his way to pass the time. We kept on comminicating with him over speaker phone and CC TV. He was enjoying there by singing song, roaring like lion and fighting with me over ownership issue of computer (He thinks he is owner of computer but most of time papa occupies it!) etc etc. We were anxiously waiting outside. Immediately after the procedure, we just ran inside and hugged him. He was calm and cheerful. Same thing was repeated in the evening at 4:30pm. After that we were back to our room.

D-6, (25-Apr-07) also Total Body Irradiation started at 8:45am. But this time Piyush is quite conversent with the procedure. So setting did not take much time. Same procedure repeated in the evening at 4:30pm. Tomorrow is the last day of Total Body Irradiation.

Piyush is looking bit low becasue of the treatment. But still has kept his spirit high. All the time trying to be cheerful and happy. GOD is kind enough to give him strength to tolerate the procedure. Please continue praying for him. He really needs your millions of millions prayers.

Here I must mention that people in Singapore are taking care of us extremely well. During these hospitalisation days, they are even taking care of our lunch and dinner! Many thanks to Neelaji, Gayatriji, Anu ji and Deepa ji for your great initiation and also many thanks to everyone who are helping us in many forms. There is not even single day we felt lonelyness in Singapore. Very kind people!

Updates from Singapore

Monday, April 23rd, 2007

As planned, today morning Piyush had to undergo one more round of radio therapy on the CNS. Today he looked so matured and brave, everyone here Doc and staff appriciated him very much. On his own, has put the mask, lied down on the machine and aksed us to go out and requested to start the procedure!

After that we decided to visit temple before taking admission in the hospital. Anu Aunty asked Piyush as which temple he wants to visit. He suddenly said, Sai Baba’s temple. Normally this temple is open for visitors only on Thursday and Saturday evenings. Still we went there to try our luck. For our surprise and good luck, temple was open! Piyush got Baba’s Darshan.

Later in the afternoon, we got the admission done in hospital. Tomorrow onwards he has to undergo three days of radio therapy followed by two days of chemo. 6th day is day rest and 30th April is the date for transplant. Now actual BATTLE starts. Journey is really really tough. But we have no other choice but to follow this path. There are so many medicines to offset the side effects, but the most effective medicine above everything is Prayers. Please continue praying for him.

Updates from Singapore

Friday, April 20th, 2007

As of today, four LP have been completed. First day more number of blasts were seen. Second day moderate blasts were observed. On the third day, ”occational blasts” seen. That means, Piyush is responding well. We will receive today’s LP report only on Monday. We are hoping to see a normal report. Meanwhile, considering the long term success, Doc has recomended to give two sittings of mild radiation to the brain. One sitting is done today and second one is planned for Monday. As per Doc, usually there won’t be any significant long term side effects since it is very mild grade. Actual duration of the procedure was one minute. After that we returned back home. Piyush is quite active cheerful. Immeidately started playing at home.

We got the revised schedule. Monday onwards Piyush will be admitted in the hospital. On 24th, 25th and 26th there will be TBI along with the few medications. On 27th and 28th again pre-conditioning. 29th is rest day. 30th April is date of transplant. This time we are hoping that everything will go as planned. We are desperately praying GOD to give all the strength to to Piyush to tolerate the treatment. Please continue praying for him.

Updates from Singapore

Monday, April 16th, 2007

Today LP (Lumber Puncture) was done to check the status of Central Nervous System (CNS). There is presence of blasts in CSF (Cerebrospinal fluid). Now we have to encounter with one more challenge. Almost platform was set for the tansplant and we were counting every minute to start the procedure. But with the presence of blasts in CSF, transplant can not be started. So Piyush needs to undergo LP and intrathecal for 4~5 times to clear the blasts from CSF. This will delay the process by one week or 10 days.

Now Doc is thinking for changing the transplant protocol. They are considering the Total Body Irradiation. Infact, on Friday, while discussing with Doc, we were bit relieved to know that there is no Total Body Irradiation in this protocol. But today we are really disturbed. We are just praying GOD to give all the strength and energy to Piyush and we request you also to pray for him.

Updates from Singapore

Saturday, April 14th, 2007

Yesterday we met Doc. The main objective was to discuss complete process of transplant and understand various milestones and the risk associated with each milestones. As a part of the hospital’s standard protocol, usually Doc discuss this with parents in depth just before admitting the patient for transplant. Journey is very very tough and very complex too. But we are confident and prepared to take up the task with all your support and the prayers.

Monday we need to go to Hospital on out patient basis. Tuesday onwards he will be admitted in hospital and he has to be in the hospital till the complition of transplant and recovery phase etc. 

In short, the procedure will start with the heavy dose of Chemo for 6 days. (During this period, his own marrows will be completely removed). 7th day is rest day. On 8th day, TRANSPLANT will be done. After the transplant, in next 4 days his counts will be almost zero. From then, next 3 weeks are crucial. During this period, new marrows suppose to grow and also start producing the blood cells. There is MOST important and crucial factor needs to be considred is Graft-versus-Host (GVH).  What is GVH? In simple term, the donors stem cells (which are transplanted) should recognise the HLA Antigens of host (Body) and start functioning as desired. This is one of the MOST IMPORTANT and KEY factor in entire journey.

As usual Piyush is quite happy and enjoying every moment of his stay in Singapore. Doc is also quite happy with his general health condition. Piyush is quite active and becoming naughty too. But he has gained lot of love from every staff in the hospital. Please continue your prayers for his good health. He needs lot of strength to tolerate the chemo. From now onwards, we really need to pray more and more as big challenge is ahead of all of us.

Update from Singapore

Thursday, April 12th, 2007

As planned, Piyush’s bone marrow was collected on 10th Morning. Also they have inserted Hickman Line. He has taken it well and yesterday he is back home too. 

Hickman line is an intravenous catheter most often used for the administration of chemotherapy or other medications, as well as for the withdrawal of blood for analysis. Hickman lines may remain in place for extended periods and are used when long-term intravenous access is needed. These are the links, which will give more explaination about the same, “http://www.cancerhelp.org.uk/help/default.asp?page=2586“ OR “http://en.wikipedia.org/wiki/Hickman_line 

Immediately after reaching home, he got engaged with his routine activities like playing with his toys, computer games etc. Also there was surprise awaited for him. His favorite Neela Aunty had brought him so many CD’s and books for him. He was delighted to see them all. All are his favorite one! Thank you so much Mrs. Neela and Mr. Prashant Chhaya for giving him so much love and happiness! We keep getting lot of support from local Indian families. Thanks to everyone for giving us courage and great support!